Netflix Documentary Features Heartbreaking End-of-Life Care Decisions at an Oakland Hospital
It's Covered Now: Talking to Your Doctor About End-of-Life Care
'Threshold Choir' Brings Songs of Comfort to the Dying
Berkeley Physician Opens Practice Focusing on Aid-in-Dying
Inside A Doctor's Mind At The End Of His Life
A Sick Newborn, A Loving Family and A Litany of Wrenching Choices
Wishes for End-of-Life Care Are Common Across Ethnicities
Legislature Approves Physician-Assisted Suicide; Bill Headed to Governor's Desk
A Racial Gap in Attitudes Toward Hospice Care
Sponsored
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Since 2011, she's been writing and editing stories for the site. Before taking up blogging, she toiled for many years (more than we can count) producing health stories for television, including\u003cem> Dateline NBC\u003c/em> and San Francisco's CBS affiliate, KPIX-TV. She also wrote up a \u003ca title=\"http://www.kqed.org/news/health/obamacare/obamacare-guide.jsp\" href=\"http://www.kqed.org/news/health/obamacare/obamacare-guide.jsp\">handy guide to the Affordable Care Act\u003c/a>, especially for Californians. Her work has been honored for many awards. Most recently she was a finalist for \"Best Topical Reporting\" from the Online News Association. You can follow her on Twitter: \u003ca title=\"https://twitter.com/laliferis\" href=\"https://twitter.com/laliferis\">@laliferis\u003c/a>","avatar":"https://secure.gravatar.com/avatar/86c339d5cdcb0dcd2b6cf5d7c3f5886b?s=600&d=blank&r=g","twitter":"laliferis","facebook":null,"instagram":null,"linkedin":null,"sites":[{"site":"news","roles":["subscriber"]},{"site":"futureofyou","roles":["subscriber"]},{"site":"stateofhealth","roles":["subscriber"]},{"site":"science","roles":["subscriber"]},{"site":"food","roles":["contributor"]}],"headData":{"title":"Lisa Aliferis | KQED","description":null,"ogImgSrc":"https://secure.gravatar.com/avatar/86c339d5cdcb0dcd2b6cf5d7c3f5886b?s=600&d=blank&r=g","twImgSrc":"https://secure.gravatar.com/avatar/86c339d5cdcb0dcd2b6cf5d7c3f5886b?s=600&d=blank&r=g"},"isLoading":false,"link":"/author/lisaaliferis"},"adembosky":{"type":"authors","id":"3205","meta":{"index":"authors_1591205172","id":"3205","found":true},"name":"April Dembosky","firstName":"April","lastName":"Dembosky","slug":"adembosky","email":"adembosky@kqed.org","display_author_email":false,"staff_mastheads":["news","science"],"title":"KQED Health Correspondent","bio":"April Dembosky is the health correspondent for KQED News and a regular contributor to NPR. She specializes in covering altered states of mind, from postpartum depression to methamphetamine-induced psychosis to the insanity defense. Her investigative series on insurance companies sidestepping mental health laws won multiple awards, including first place in beat reporting from the national Association of Health Care Journalists. She is the recipient of numerous other prizes and fellowships, including a national Edward R. Murrow award for investigative reporting, a Society of Professional Journalists award for long-form storytelling, and a Carter Center Fellowship for Mental Health Journalism.\r\n\r\nDembosky reported and produced \u003cem>Soundtrack of Silence\u003c/em>, an audio documentary about music and memory that is currently being made into a feature film by Paramount Pictures.\r\n\r\nBefore joining KQED in 2013, Dembosky covered technology and Silicon Valley for \u003cem>The Financial Times of London,\u003c/em> and contributed business and arts stories to \u003cem>Marketplace \u003c/em>and \u003cem>The New York Times.\u003c/em> She got her undergraduate degree in philosophy from Smith College and her master's in journalism from the University of California, Berkeley. She is a classically trained violinist and proud alum of the first symphony orchestra at Burning Man.","avatar":"https://secure.gravatar.com/avatar/ef92999be4ceb9ea60701e7dc276f813?s=600&d=blank&r=g","twitter":"adembosky","facebook":null,"instagram":null,"linkedin":null,"sites":[{"site":"arts","roles":["author"]},{"site":"news","roles":["editor"]},{"site":"futureofyou","roles":["author"]},{"site":"stateofhealth","roles":["editor"]},{"site":"science","roles":["editor"]},{"site":"forum","roles":["editor"]}],"headData":{"title":"April Dembosky | KQED","description":"KQED Health Correspondent","ogImgSrc":"https://secure.gravatar.com/avatar/ef92999be4ceb9ea60701e7dc276f813?s=600&d=blank&r=g","twImgSrc":"https://secure.gravatar.com/avatar/ef92999be4ceb9ea60701e7dc276f813?s=600&d=blank&r=g"},"isLoading":false,"link":"/author/adembosky"},"lisafine":{"type":"authors","id":"11105","meta":{"index":"authors_1591205172","id":"11105","found":true},"name":"Lisa Fine","firstName":"Lisa","lastName":"Fine","slug":"lisafine","email":"lisacfine@gmail.com","display_author_email":false,"staff_mastheads":[],"title":null,"bio":"Lisa Fine is a veteran journalist who's written for papers including the Washington Post, Philadelphia Inquirer, Richmond (Va.) Times-Dispatch and Education Week.\r\n\r\n ","avatar":"https://secure.gravatar.com/avatar/a9390ffc82e66cee761ae45f61cef865?s=600&d=blank&r=g","twitter":"@Lisa_Fine","facebook":null,"instagram":null,"linkedin":null,"sites":[{"site":"futureofyou","roles":["author"]},{"site":"stateofhealth","roles":["editor"]}],"headData":{"title":"Lisa Fine | KQED","description":null,"ogImgSrc":"https://secure.gravatar.com/avatar/a9390ffc82e66cee761ae45f61cef865?s=600&d=blank&r=g","twImgSrc":"https://secure.gravatar.com/avatar/a9390ffc82e66cee761ae45f61cef865?s=600&d=blank&r=g"},"isLoading":false,"link":"/author/lisafine"}},"breakingNewsReducer":{},"campaignFinanceReducer":{},"firebase":{"requesting":{},"requested":{},"timestamps":{},"data":{},"ordered":{},"auth":{"isLoaded":false,"isEmpty":true},"authError":null,"profile":{"isLoaded":false,"isEmpty":true},"listeners":{"byId":{},"allIds":[]},"isInitializing":false,"errors":[]},"navBarReducer":{"navBarId":"home","fullView":true,"showPlayer":false},"navMenuReducer":{"menus":[{"key":"menu1","items":[{"name":"News","link":"/","type":"title"},{"name":"Politics","link":"/politics"},{"name":"Science","link":"/science"},{"name":"Education","link":"/educationnews"},{"name":"Housing","link":"/housing"},{"name":"Immigration","link":"/immigration"},{"name":"Criminal Justice","link":"/criminaljustice"},{"name":"Silicon Valley","link":"/siliconvalley"},{"name":"Forum","link":"/forum"},{"name":"The California Report","link":"/californiareport"}]},{"key":"menu2","items":[{"name":"Arts & Culture","link":"/arts","type":"title"},{"name":"Critics’ Picks","link":"/thedolist"},{"name":"Cultural Commentary","link":"/artscommentary"},{"name":"Food & Drink","link":"/food"},{"name":"Bay Area Hip-Hop","link":"/bayareahiphop"},{"name":"Rebel Girls","link":"/rebelgirls"},{"name":"Arts Video","link":"/artsvideos"}]},{"key":"menu3","items":[{"name":"Podcasts","link":"/podcasts","type":"title"},{"name":"Bay Curious","link":"/podcasts/baycurious"},{"name":"Rightnowish","link":"/podcasts/rightnowish"},{"name":"The Bay","link":"/podcasts/thebay"},{"name":"On Our Watch","link":"/podcasts/onourwatch"},{"name":"Mindshift","link":"/podcasts/mindshift"},{"name":"Consider This","link":"/podcasts/considerthis"},{"name":"Political Breakdown","link":"/podcasts/politicalbreakdown"}]},{"key":"menu4","items":[{"name":"Live Radio","link":"/radio","type":"title"},{"name":"TV","link":"/tv","type":"title"},{"name":"Events","link":"/events","type":"title"},{"name":"For Educators","link":"/education","type":"title"},{"name":"Support KQED","link":"/support","type":"title"},{"name":"About","link":"/about","type":"title"},{"name":"Help Center","link":"https://kqed-helpcenter.kqed.org/s","type":"title"}]}]},"pagesReducer":{},"postsReducer":{"stream_live":{"type":"live","id":"stream_live","audioUrl":"https://streams.kqed.org/kqedradio","title":"Live Stream","excerpt":"Live Stream information currently unavailable.","link":"/radio","featImg":"","label":{"name":"KQED Live","link":"/"}},"stream_kqedNewscast":{"type":"posts","id":"stream_kqedNewscast","audioUrl":"https://www.kqed.org/.stream/anon/radio/RDnews/newscast.mp3?_=1","title":"KQED Newscast","featImg":"","label":{"name":"88.5 FM","link":"/"}},"stateofhealth_236832":{"type":"posts","id":"stateofhealth_236832","meta":{"index":"posts_1591205157","site":"stateofhealth","id":"236832","score":null,"sort":[1473805866000]},"guestAuthors":[],"slug":"netflix-documentary-features-heartbreaking-end-of-life-care-decisions-at-an-oakland-hospital","title":"Netflix Documentary Features Heartbreaking End-of-Life Care Decisions at an Oakland Hospital","publishDate":1473805866,"format":"standard","headTitle":"State of Health | KQED News","labelTerm":{"site":"stateofhealth"},"content":"\u003cp>When is more medical care helpful in end-of-life situations and when does it just lead to more suffering? How do you know when it's time to let someone you love pass away naturally?\u003c/p>\n\u003cp>These choices are heart-wrenching for patients, families, and their doctors.\u003c/p>\n\u003cp>A new Netflix documentary short called \u003ca href=\"https://www.netflix.com/title/80106307\" target=\"_blank\">\u003cem>Extremis\u003c/em>\u003c/a>, which is Latin for \"at the point of death,\" follows doctors, patients and their loved ones in various end-of-life scenarios that play out at the intensive care unit at Oakland's Highland Hospital.\u003c/p>\n\u003cp>https://www.youtube.com/watch?v=TJiY8duVgz0\u003c/p>\n\u003cp>As difficult as these choices are, it's important to figure out if an intervention will change the course for a patient, said Dr. Jessica Nutik Zitter, the Oakland palliative care physician, who is featured in the documentary.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\"Here's the reality, we are all gonna die,\" she says to a group of medical staff in the film's trailer. \"Everyone standing in this room is gonna die one day and it's good to have a little bit of a say in how.\"\u003c/p>\n\u003cp>Every day, patients are permanently hooked up to machines, she says in the film.\u003c/p>\n\u003cp>\"My concern is we are going to cause more suffering without likely benefit,\" she tells a patient's loved one in the film. \"The other approach is let her pass naturally.\"\u003c/p>\n\u003cp>It is often difficult for doctors to fight their instinct to treat medical symptoms and know when it's time to stop, she wrote about in the \u003ca href=\"http://well.blogs.nytimes.com/2016/04/14/in-the-hospital-letting-nature-takes-its-course/\" target=\"_blank\">\u003cem>New York Times\u003c/em>\u003c/a> in April.\u003c/p>\n\u003cp>There is a growing movement within the medical field to recognize how important it is for doctors to help patients navigate care and face the end of their lives.\u003c/p>\n\u003cp>Boston surgeon Atul Gawande's recent book and movie called \u003cem>Being Mortal\u003c/em>, revealed how well-meaning doctors are often untrained and unprepared to discuss death with their patients.\u003c/p>\n\u003cp>End-of-life issues have also been at the forefront of public discussion as states like California enact legislation to allow terminally ill patients to take medicines to end their lives.\u003c/p>\n\u003cp>The Netflix documentary shows how difficult the choices are for families who have to make decisions about a dying loved one.\u003c/p>\n\u003cp>Giving consent for doctors to stop medical treatment can feel wrong and provoke tremendous feelings of guilt for a patient's family.\u003c/p>\n\u003cp>\"It would feel like murder to pull her life support,\" says one young woman when faced with this choice.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>The 24-minute documentary, directed by Dan Krauss, won the Best Documentary Short award this year when it premiered at the 2016 Tribeca Film Festival.\u003c/p>\n\n","blocks":[],"excerpt":"The film follows doctors, patients and their loved ones in the intensive care unit at Oakland's Highland Hospital.","status":"publish","parent":0,"modified":1473866303,"stats":{"hasAudio":false,"hasVideo":true,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":17,"wordCount":434},"headData":{"title":"Netflix Documentary Features Heartbreaking End-of-Life Care Decisions at an Oakland Hospital | KQED","description":"The film follows doctors, patients and their loved ones in the intensive care unit at Oakland's Highland Hospital.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"236832 http://ww2.kqed.org/stateofhealth/?p=236832","disqusUrl":"https://ww2.kqed.org/stateofhealth/2016/09/13/netflix-documentary-features-heartbreaking-end-of-life-care-decisions-at-an-oakland-hospital/","disqusTitle":"Netflix Documentary Features Heartbreaking End-of-Life Care Decisions at an Oakland Hospital","path":"/stateofhealth/236832/netflix-documentary-features-heartbreaking-end-of-life-care-decisions-at-an-oakland-hospital","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>When is more medical care helpful in end-of-life situations and when does it just lead to more suffering? How do you know when it's time to let someone you love pass away naturally?\u003c/p>\n\u003cp>These choices are heart-wrenching for patients, families, and their doctors.\u003c/p>\n\u003cp>A new Netflix documentary short called \u003ca href=\"https://www.netflix.com/title/80106307\" target=\"_blank\">\u003cem>Extremis\u003c/em>\u003c/a>, which is Latin for \"at the point of death,\" follows doctors, patients and their loved ones in various end-of-life scenarios that play out at the intensive care unit at Oakland's Highland Hospital.\u003c/p>\u003c/p>\u003cp>\u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutube'>\n \u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutubeInside'>\n \u003ciframe\n loading='lazy'\n class='utils-parseShortcode-shortcodes-__youtubeShortcode__youtubePlayer'\n type='text/html'\n src='//www.youtube.com/embed/TJiY8duVgz0'\n title='//www.youtube.com/embed/TJiY8duVgz0'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>\u003cp>As difficult as these choices are, it's important to figure out if an intervention will change the course for a patient, said Dr. Jessica Nutik Zitter, the Oakland palliative care physician, who is featured in the documentary.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\"Here's the reality, we are all gonna die,\" she says to a group of medical staff in the film's trailer. \"Everyone standing in this room is gonna die one day and it's good to have a little bit of a say in how.\"\u003c/p>\n\u003cp>Every day, patients are permanently hooked up to machines, she says in the film.\u003c/p>\n\u003cp>\"My concern is we are going to cause more suffering without likely benefit,\" she tells a patient's loved one in the film. \"The other approach is let her pass naturally.\"\u003c/p>\n\u003cp>It is often difficult for doctors to fight their instinct to treat medical symptoms and know when it's time to stop, she wrote about in the \u003ca href=\"http://well.blogs.nytimes.com/2016/04/14/in-the-hospital-letting-nature-takes-its-course/\" target=\"_blank\">\u003cem>New York Times\u003c/em>\u003c/a> in April.\u003c/p>\n\u003cp>There is a growing movement within the medical field to recognize how important it is for doctors to help patients navigate care and face the end of their lives.\u003c/p>\n\u003cp>Boston surgeon Atul Gawande's recent book and movie called \u003cem>Being Mortal\u003c/em>, revealed how well-meaning doctors are often untrained and unprepared to discuss death with their patients.\u003c/p>\n\u003cp>End-of-life issues have also been at the forefront of public discussion as states like California enact legislation to allow terminally ill patients to take medicines to end their lives.\u003c/p>\n\u003cp>The Netflix documentary shows how difficult the choices are for families who have to make decisions about a dying loved one.\u003c/p>\n\u003cp>Giving consent for doctors to stop medical treatment can feel wrong and provoke tremendous feelings of guilt for a patient's family.\u003c/p>\n\u003cp>\"It would feel like murder to pull her life support,\" says one young woman when faced with this choice.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>The 24-minute documentary, directed by Dan Krauss, won the Best Documentary Short award this year when it premiered at the 2016 Tribeca Film Festival.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/stateofhealth/236832/netflix-documentary-features-heartbreaking-end-of-life-care-decisions-at-an-oakland-hospital","authors":["11105"],"categories":["stateofhealth_11","stateofhealth_166"],"tags":["stateofhealth_40","stateofhealth_2808","stateofhealth_2907","stateofhealth_2906","stateofhealth_2908","stateofhealth_2519","stateofhealth_145"],"featImg":"stateofhealth_236882","label":"stateofhealth"},"stateofhealth_206810":{"type":"posts","id":"stateofhealth_206810","meta":{"index":"posts_1591205157","site":"stateofhealth","id":"206810","score":null,"sort":[1467822616000]},"guestAuthors":[],"slug":"its-covered-now-talking-to-your-doctor-about-end-of-life-care","title":"It's Covered Now: Talking to Your Doctor About End-of-Life Care","publishDate":1467822616,"format":"standard","headTitle":"State of Health | KQED News","labelTerm":{"site":"stateofhealth"},"content":"\u003cp>Millions of Californians are newly eligible for a health care benefit that could determine the treatment they receive in their final days — and most don’t know it.\u003c/p>\n\u003cp>Medi-Cal, which covers more than 13 million Californians, and Medicare, \u003ca href=\"http://kff.org/medicare/state-indicator/total-medicare-beneficiaries/\" target=\"_blank\">with more than 5 million\u003c/a> California enrollees now pay for “advance care planning” discussions with doctors.\u003c/p>\n\u003cp>Advance care planning isn’t about long-term care options, such as nursing homes or assisted living.\u003c/p>\n\u003cp>It’s about “your wishes for your care if you are not able to speak for yourself,” said Helen McNeal, executive director of the \u003ca href=\"https://csupalliativecare.org/\" target=\"_blank\">California State University Institute for Palliative Care\u003c/a>.\u003c/p>\n\u003cp>“If you’re incapacitated, if you need someone to speak for you, who do you want to speak for you? And what would be your medical wishes?” she said.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>If, for instance, you have a stroke that leaves you unconscious and unable to communicate, with little hope for improvement, would you want to be kept alive with a feeding tube and or ventilator?\u003c/p>\n\u003cp>“These decisions may have consequences for the quality of life you have for the rest of your life. They may also have consequences for whether you live or die,” McNeal said.\u003c/p>\n\u003cp>In other words, they’re important. But many doctors and patients don’t yet realize that talking about these decisions — and possibly putting them into writing — is a covered benefit.\u003c/p>\n\u003cp>Starting in October, Medi-Cal — the state’s version of the federal Medicaid program for low-income residents — began covering advance care planning discussions between doctors (or other qualified providers) and patients (or a family member), said Tony Cava, spokesman for the state Department of Health Care Services, which administers Medi-Cal.\u003c/p>\n\u003cp>Any Medi-Cal recipient can use the coverage regardless of age, he said. Doctors can bill for the conversation twice a year per patient — plus an additional 30 minutes for one of the conversations — before they have to seek authorization for more coverage.\u003c/p>\n\u003cp>Medicare, the federal health insurance program for people 65 and older, and for people younger than 65 who have certain disabilities, started covering the discussions on Jan. 1. \u003ca href=\"https://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/PhysicianFeeSched/Downloads/FAQ-Advance-Care-Planning.pdf\" target=\"_blank\">Medicare does not limit\u003c/a> the number of discussions per patient each year.\u003c/p>\n\u003cp>Some private insurance plans cover these discussions and some don’t, McNeal said. Check with your plan.\u003c/p>\n\u003cp>Both Medicare and Medi-Cal will cover the conversations even if patients don’t end up completing an “\u003ca href=\"https://www.nlm.nih.gov/medlineplus/ency/patientinstructions/000472.htm\" target=\"_blank\">advance care directive\u003c/a>” as a result. That’s a document that formalizes your wishes, which should be shared with your family and doctor.\u003c/p>\n\u003cp>McNeal believes that anyone over 18 should have this discussion and complete an advance directive.\u003c/p>\n\u003cp>But don’t expect your doctor to initiate the conversation.\u003c/p>\n\u003cp>“Many physicians may not be very comfortable having this conversation,” said Dr. Richard Thorp, president of the Paradise Medical Group near Chico, and past president of the \u003ca href=\"http://www.cmanet.org/\" target=\"_blank\">California Medical Association\u003c/a>, which represents the state’s doctors.\u003c/p>\n\u003cp>\u003ca href=\"http://www.jhartfound.org/news-events/news/advance-care-planning-poll\" target=\"_blank\">A poll of more than 700 doctors\u003c/a>, released in April, found that nearly half of them feel unsure some or much of the time about what to say when discussing end-of-life care with patients. (The poll was commissioned in part by the California Health Care Foundation. California Healthline is an editorially independent publication of the California Health Care Foundation.)\u003c/p>\n\u003cp>Thorp’s patients are mostly older, so he incorporates advance care planning into their annual \u003ca href=\"https://www.medicare.gov/coverage/preventive-visit-and-yearly-wellness-exams.html\" target=\"_blank\">Medicare Wellness exams\u003c/a>. Medicare reimburses him about $86 for the initial 30-minute discussion, and about $75 for each additional 30 minutes, he said.\u003c/p>\n\u003cp>“There’s an art to having the discussion,” he said. “There’s an art to recognizing when people are uncomfortable.”\u003c/p>\n\u003cp>McNeal’s institute, in partnership with the \u003ca href=\"http://coalitionccc.org/\" target=\"_blank\">Coalition for Compassionate Care of California\u003c/a>, offers online training for doctors about advance care planning. One course specifically focuses on \u003ca href=\"https://csupalliativecare.org/programs/advance-care-planning/fundamentals/\" target=\"_blank\">how to have an effective conversation with patients\u003c/a>.\u003c/p>\n\u003cp>Because many doctors don’t know about this benefit — or may feel uncomfortable broaching the topic — most people should start by \u003ca href=\"http://www.aarp.org/relationships/caregiving-resource-center/info-11-2010/lfm_living_will_and_health_care_power_of_attorney.html\" target=\"_blank\">having a conversation\u003c/a> with family and loved ones, suggested Mark Beach, an AARP spokesman based in Sacramento.\u003c/p>\n\u003cp>After your discussion, write down your wishes, he said.\u003c/p>\n\u003cp>“It’s difficult to discuss, but when you’ve done it, it’s a comfort,” Beach said. “Not only will your wishes be followed, but your loved ones will know what to do.”\u003c/p>\n\u003cp>A variety of forms and templates are available to consumers. Thorp sometimes uses what’s called a “\u003ca href=\"http://www.polst.org/advance-care-planning/polst-and-advance-directives/\" target=\"_blank\">POLST\u003c/a>” form, which is \u003ca href=\"http://www.polst.org/advance-care-planning/faq/\" target=\"_blank\">a medical order\u003c/a> that must be completed and signed by a health care professional.\u003c/p>\n\u003cp>It is typically for seriously ill or frail patients, McNeal said, whereas an advance care directive is a legal document for people of any age or condition.\u003c/p>\n\u003cp>McNeal recommends the “\u003ca href=\"https://agingwithdignity.org/five-wishes\" target=\"_blank\">Five Wishes\u003c/a>” form, which can be personalized and is available online for $5 at \u003ca href=\"http://www.agingwithdignity.org/\" target=\"_blank\">www.AgingWithDignity.org\u003c/a>. Other options for advance directives can be found at \u003ca href=\"http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289\" target=\"_blank\">www.CaringInfo.org\u003c/a> or \u003ca href=\"http://bit.ly/28TtVVy\" target=\"_blank\">through AARP\u003c/a>. (A lawyer can help you prepare an advance directive, but you usually don’t need an attorney to get it done.)\u003c/p>\n\u003cp>After you have filled out your advance care directive, take it to your doctor and tell her you want to talk with her about it, McNeal said. Don’t forget to give your doctor a copy.\u003c/p>\n\u003cp>“The role of the physician is really to provide information, not to persuade one way or the other,” Beach said.\u003c/p>\n\u003cp>Thorp explains to his patients what it means to be intubated, fed artificially and kept on life-support.\u003c/p>\n\u003cp>Most are open to the discussion, he said, and their responses are mixed. Some older or sicker patients tell him they don’t want any extraordinary measures if they’re incapacitated. Others, who are younger and healthier, say they would probably want medical intervention if they might have a chance to thrive afterward.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>“Most people don’t want to be kept on life-support indefinitely. They really don’t want that,” Thorp said. “They want to live a productive life.”\u003c/p>\n\n","blocks":[],"excerpt":"A new health benefit available to millions of Californians encourages people to discuss end-of-life care options with their doctors.","status":"publish","parent":0,"modified":1467759897,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":33,"wordCount":1082},"headData":{"title":"It's Covered Now: Talking to Your Doctor About End-of-Life Care | KQED","description":"A new health benefit available to millions of Californians encourages people to discuss end-of-life care options with their doctors.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"206810 http://ww2.kqed.org/stateofhealth/?p=206810","disqusUrl":"https://ww2.kqed.org/stateofhealth/2016/07/06/its-covered-now-talking-to-your-doctor-about-end-of-life-care/","disqusTitle":"It's Covered Now: Talking to Your Doctor About End-of-Life Care","nprByline":"Emily Bazar\u003cbr />\u003ca href=\"http://californiahealthline.org/\">California Healthline\u003c/a>","path":"/stateofhealth/206810/its-covered-now-talking-to-your-doctor-about-end-of-life-care","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Millions of Californians are newly eligible for a health care benefit that could determine the treatment they receive in their final days — and most don’t know it.\u003c/p>\n\u003cp>Medi-Cal, which covers more than 13 million Californians, and Medicare, \u003ca href=\"http://kff.org/medicare/state-indicator/total-medicare-beneficiaries/\" target=\"_blank\">with more than 5 million\u003c/a> California enrollees now pay for “advance care planning” discussions with doctors.\u003c/p>\n\u003cp>Advance care planning isn’t about long-term care options, such as nursing homes or assisted living.\u003c/p>\n\u003cp>It’s about “your wishes for your care if you are not able to speak for yourself,” said Helen McNeal, executive director of the \u003ca href=\"https://csupalliativecare.org/\" target=\"_blank\">California State University Institute for Palliative Care\u003c/a>.\u003c/p>\n\u003cp>“If you’re incapacitated, if you need someone to speak for you, who do you want to speak for you? And what would be your medical wishes?” she said.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>If, for instance, you have a stroke that leaves you unconscious and unable to communicate, with little hope for improvement, would you want to be kept alive with a feeding tube and or ventilator?\u003c/p>\n\u003cp>“These decisions may have consequences for the quality of life you have for the rest of your life. They may also have consequences for whether you live or die,” McNeal said.\u003c/p>\n\u003cp>In other words, they’re important. But many doctors and patients don’t yet realize that talking about these decisions — and possibly putting them into writing — is a covered benefit.\u003c/p>\n\u003cp>Starting in October, Medi-Cal — the state’s version of the federal Medicaid program for low-income residents — began covering advance care planning discussions between doctors (or other qualified providers) and patients (or a family member), said Tony Cava, spokesman for the state Department of Health Care Services, which administers Medi-Cal.\u003c/p>\n\u003cp>Any Medi-Cal recipient can use the coverage regardless of age, he said. Doctors can bill for the conversation twice a year per patient — plus an additional 30 minutes for one of the conversations — before they have to seek authorization for more coverage.\u003c/p>\n\u003cp>Medicare, the federal health insurance program for people 65 and older, and for people younger than 65 who have certain disabilities, started covering the discussions on Jan. 1. \u003ca href=\"https://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/PhysicianFeeSched/Downloads/FAQ-Advance-Care-Planning.pdf\" target=\"_blank\">Medicare does not limit\u003c/a> the number of discussions per patient each year.\u003c/p>\n\u003cp>Some private insurance plans cover these discussions and some don’t, McNeal said. Check with your plan.\u003c/p>\n\u003cp>Both Medicare and Medi-Cal will cover the conversations even if patients don’t end up completing an “\u003ca href=\"https://www.nlm.nih.gov/medlineplus/ency/patientinstructions/000472.htm\" target=\"_blank\">advance care directive\u003c/a>” as a result. That’s a document that formalizes your wishes, which should be shared with your family and doctor.\u003c/p>\n\u003cp>McNeal believes that anyone over 18 should have this discussion and complete an advance directive.\u003c/p>\n\u003cp>But don’t expect your doctor to initiate the conversation.\u003c/p>\n\u003cp>“Many physicians may not be very comfortable having this conversation,” said Dr. Richard Thorp, president of the Paradise Medical Group near Chico, and past president of the \u003ca href=\"http://www.cmanet.org/\" target=\"_blank\">California Medical Association\u003c/a>, which represents the state’s doctors.\u003c/p>\n\u003cp>\u003ca href=\"http://www.jhartfound.org/news-events/news/advance-care-planning-poll\" target=\"_blank\">A poll of more than 700 doctors\u003c/a>, released in April, found that nearly half of them feel unsure some or much of the time about what to say when discussing end-of-life care with patients. (The poll was commissioned in part by the California Health Care Foundation. California Healthline is an editorially independent publication of the California Health Care Foundation.)\u003c/p>\n\u003cp>Thorp’s patients are mostly older, so he incorporates advance care planning into their annual \u003ca href=\"https://www.medicare.gov/coverage/preventive-visit-and-yearly-wellness-exams.html\" target=\"_blank\">Medicare Wellness exams\u003c/a>. Medicare reimburses him about $86 for the initial 30-minute discussion, and about $75 for each additional 30 minutes, he said.\u003c/p>\n\u003cp>“There’s an art to having the discussion,” he said. “There’s an art to recognizing when people are uncomfortable.”\u003c/p>\n\u003cp>McNeal’s institute, in partnership with the \u003ca href=\"http://coalitionccc.org/\" target=\"_blank\">Coalition for Compassionate Care of California\u003c/a>, offers online training for doctors about advance care planning. One course specifically focuses on \u003ca href=\"https://csupalliativecare.org/programs/advance-care-planning/fundamentals/\" target=\"_blank\">how to have an effective conversation with patients\u003c/a>.\u003c/p>\n\u003cp>Because many doctors don’t know about this benefit — or may feel uncomfortable broaching the topic — most people should start by \u003ca href=\"http://www.aarp.org/relationships/caregiving-resource-center/info-11-2010/lfm_living_will_and_health_care_power_of_attorney.html\" target=\"_blank\">having a conversation\u003c/a> with family and loved ones, suggested Mark Beach, an AARP spokesman based in Sacramento.\u003c/p>\n\u003cp>After your discussion, write down your wishes, he said.\u003c/p>\n\u003cp>“It’s difficult to discuss, but when you’ve done it, it’s a comfort,” Beach said. “Not only will your wishes be followed, but your loved ones will know what to do.”\u003c/p>\n\u003cp>A variety of forms and templates are available to consumers. Thorp sometimes uses what’s called a “\u003ca href=\"http://www.polst.org/advance-care-planning/polst-and-advance-directives/\" target=\"_blank\">POLST\u003c/a>” form, which is \u003ca href=\"http://www.polst.org/advance-care-planning/faq/\" target=\"_blank\">a medical order\u003c/a> that must be completed and signed by a health care professional.\u003c/p>\n\u003cp>It is typically for seriously ill or frail patients, McNeal said, whereas an advance care directive is a legal document for people of any age or condition.\u003c/p>\n\u003cp>McNeal recommends the “\u003ca href=\"https://agingwithdignity.org/five-wishes\" target=\"_blank\">Five Wishes\u003c/a>” form, which can be personalized and is available online for $5 at \u003ca href=\"http://www.agingwithdignity.org/\" target=\"_blank\">www.AgingWithDignity.org\u003c/a>. Other options for advance directives can be found at \u003ca href=\"http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289\" target=\"_blank\">www.CaringInfo.org\u003c/a> or \u003ca href=\"http://bit.ly/28TtVVy\" target=\"_blank\">through AARP\u003c/a>. (A lawyer can help you prepare an advance directive, but you usually don’t need an attorney to get it done.)\u003c/p>\n\u003cp>After you have filled out your advance care directive, take it to your doctor and tell her you want to talk with her about it, McNeal said. Don’t forget to give your doctor a copy.\u003c/p>\n\u003cp>“The role of the physician is really to provide information, not to persuade one way or the other,” Beach said.\u003c/p>\n\u003cp>Thorp explains to his patients what it means to be intubated, fed artificially and kept on life-support.\u003c/p>\n\u003cp>Most are open to the discussion, he said, and their responses are mixed. Some older or sicker patients tell him they don’t want any extraordinary measures if they’re incapacitated. Others, who are younger and healthier, say they would probably want medical intervention if they might have a chance to thrive afterward.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>“Most people don’t want to be kept on life-support indefinitely. They really don’t want that,” Thorp said. “They want to live a productive life.”\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/stateofhealth/206810/its-covered-now-talking-to-your-doctor-about-end-of-life-care","authors":["byline_stateofhealth_206810"],"categories":["stateofhealth_11","stateofhealth_13"],"tags":["stateofhealth_186","stateofhealth_40","stateofhealth_2519"],"featImg":"stateofhealth_206835","label":"stateofhealth"},"stateofhealth_195742":{"type":"posts","id":"stateofhealth_195742","meta":{"index":"posts_1591205157","site":"stateofhealth","id":"195742","score":null,"sort":[1465660680000]},"guestAuthors":[],"slug":"threshold-choir-brings-songs-of-comfort-to-the-dying","title":"'Threshold Choir' Brings Songs of Comfort to the Dying","publishDate":1465660680,"format":"video","headTitle":"State of Health | KQED News","labelTerm":{"site":"stateofhealth"},"content":"\u003cp>Three women climb the stairs of a beautiful Victorian in San Francisco. They hold nothing in their hands, but they bring a precious gift. These women are members of the Threshold Choir, and the home they are visiting is the Zen Hospice Project. They sing to people at the last threshold of life, and today, when they reach the second floor, they find Luca Sager, a 38-year-old chef with terminal brain cancer.\u003c/p>\n\u003cp>Sager’s hands, tattooed with a salt and pepper shakers, rest on the top of his covers as he listens as the women sing, a cappella:\u003c/p>\n\u003cp>\u003cem>You are not alone\u003cbr>\nI am here now\u003cbr>\nWe are not alone\u003cbr>\nWe are here together\u003c/em>\u003c/p>\n\u003cp>Sager speaks slowly through medication and pain. He says peace fills him when the women sing. “It feels like a good time for me to gather my feelings about gratitude and being calm and appreciation. I just smile a lot.”\u003c/p>\n\u003cp>Kate Munger founded the Threshold Choir in Marin County and the East Bay 16 years ago. She says it grew out of her own experience of sitting with a friend of who was dying of AIDS back in the '90s.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>“It was very distressing to see him comatose and agitated,” Munger recalls. “I did what I did at the time when I was nervous or afraid, and I started singing -- instinctively.”\u003c/p>\n\u003cp>She says her friend “calmed, settled and got positively serene,” and her own feelings mirrored those of her dying friend. “I felt like I had discovered, or rediscovered, something -- an ancient practice that tribal humans do for one another when someone’s struggling.”\u003c/p>\n\u003cfigure id=\"attachment_196124\" class=\"wp-caption aligncenter\" style=\"max-width: 1920px\">\u003cimg class=\"wp-image-196124 size-full\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/06/Threshold-Choir_Web-2.jpg\" alt=\"Threshold Choir_Web 2\" width=\"1920\" height=\"1080\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-2.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-2-400x225.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-2-800x450.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-2-768x432.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-2-1440x810.jpg 1440w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-2-1180x664.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-2-960x540.jpg 960w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003cfigcaption class=\"wp-caption-text\">Luca Sager, 38, who is terminally ill with brain cancer, listens to the Threshold Choir. They are \"an act of care,\" he says. \u003ccite>(Scott Stoneback for KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The \u003ca href=\"https://thresholdchoir.org\" target=\"_blank\">Threshold Choir\u003c/a> has spread since then -- across North America and to other countries. It is devoted to lifting others up, to creating a place for reflection, especially for people who may be outside the traditional reaches of religion. The singers speak of the healing quality of music and the power of the human voice to soothe and to make beautiful the process of dying, which is so often accompanied by great fear.\u003c/p>\n\u003cp>Choir singer Katharine Rose Kirner says she knows what it is like to lie powerless in bed facing the fear of death. In 2001, as the country was reeling from the 9/11 attacks, Kirner faced a different kind of threat, a brain tumor the size of a grapefruit. She says she was gripped by fear of death and feelings she had not done what she needed to do in her life. She vowed to do something “important” if she recuperated.\u003c/p>\n\u003cp>When she did eventually heal, she learned of the Threshold Choir and became a devoted member singing at least once a week. She says being part of the choir has given her a chance to see how gentle dying can be.\u003c/p>\n\u003cp>“Most of us think of death as an event, but it’s a process,\" she says. \"That gave me great comfort.” Watching the process has moved her to think of what she wants at her own death, something she says she would not have contemplated without being in the choir. \"I would have sat in the fear.”\u003c/p>\n\u003cfigure id=\"attachment_196122\" class=\"wp-caption aligncenter\" style=\"max-width: 1920px\">\u003cimg class=\"wp-image-196122 size-full\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/06/Threshold-Choir__Web-3.jpg\" alt=\"Threshold Choir__Web 3\" width=\"1920\" height=\"1080\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir__Web-3.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir__Web-3-400x225.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir__Web-3-800x450.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir__Web-3-768x432.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir__Web-3-1440x810.jpg 1440w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir__Web-3-1180x664.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir__Web-3-960x540.jpg 960w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003cfigcaption class=\"wp-caption-text\">Kate Munger, founder of the Threshold Choir. \u003ccite>(Scott Stoneback for KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Singer Peggy Cadbury, a retired nurse, saw a fair amount of death while working in hospital settings. But as a member of the choir, she has the chance to tend to the dying with a different intention. \u003c/p>\n\u003cp>“When you're nursing at the bedside of somebody who is dying, you're constantly concerned about their physical wellbeing, their pain level, ” Cadbury says. But as a member of the choir, “I can just be there to hold space for that person in the room and create an environment of comfort and caring.”\u003c/p>\n\u003cp>Munger says the harmonies are particularly powerful in creating a sense of calm and wellbeing. “It’s a visceral experience. It’s not just the ears; it's full body absorption of vibration.”\u003c/p>\n\u003cp>Cadbury says singing quietly and softly the simple songs written by choir members is much like singing a lullaby to a child. \u003c/p>\n\u003cp>“It is like a gentle caress, and it feels right,” she says.\u003c/p>\n\u003cp>Sager, the patient, says the singing not only helps bring him emotional calm, but it also reduces the physical pain he has in his head around the tumor.\u003c/p>\n\u003cp>Research suggests that listening to live music can help reduce pain in palliative care patients. A \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed/23017609\" target=\"_blank\">2012 study\u003c/a> found that patients found that patients who had the harp played to them for 20 minutes -- along with breathing exercises and visualization -- reported a significant decrease in pain compared to a control group.\u003c/p>\n\u003cp>Registered nurse and certified music therapist Kathy Jo Gutgsell at University Hospitals in Cleveland was lead author of the study. She believes music “may awaken the body’s own endorphins\" -- those much-chased-after chemicals that make us feel better about the world.\u003c/p>\n\u003cp>The human brain \"doesn’t multitask very well,\" she explains. \"When we are paying attention to the music, we can't pay attention to the pain.” \u003c/p>\n\u003cp>Gutgsell says music is tied to memories and can connect us to times of great joy and sadness. “I think humans are hardwired for music. Some people think we were singing before we were speaking back at the beginning of humanity.”\u003c/p>\n\u003cp>The Threshold Choir singers say they, too, are helped by the act of singing together and for a person in need. “You see them calm, and then you calm, and it’s a reciprocal thing,” Cadbury says.\u003c/p>\n\u003cp>Kirner says singing in the choir is one of the best things in her life. “I get a sense of purpose.” Choir singers may benefit in other ways. A growing body of research finds that people who take part in choral singing have a better sense of wellbeing than those who don’t sing.\u003c/p>\n\u003cfigure id=\"attachment_196125\" class=\"wp-caption aligncenter\" style=\"max-width: 1920px\">\u003cimg class=\"wp-image-196125 size-full\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/06/Threshold-Choir_Web-1-1.jpg\" alt=\"Threshold Choir_Web 1-1\" width=\"1920\" height=\"1080\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-1-1.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-1-1-400x225.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-1-1-800x450.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-1-1-768x432.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-1-1-1440x810.jpg 1440w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-1-1-1180x664.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-1-1-960x540.jpg 960w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003cfigcaption class=\"wp-caption-text\">From left, Peggy Cadbury, Katharine Rose Kirner and Karen Mooney, members of the Threshold Choir. \u003ccite>(Scott Stoneback for KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The research suggests that singing itself can raise levels of oxytocin, the hormone associated with trust and bonding. So people who sing in chorus may feel a strong bond with those they sing with together. Right now in San Francisco, a\u003ca href=\"http://ww2.kqed.org/stateofhealth/2013/08/20/in-san-francisco-seniors-are-singing-for-science/\" target=\"_blank\"> five-year study is underway\u003c/a> looking at both the possible physical and emotional benefits of choral singing for seniors.\u003c/p>\n\u003cp>Munger says songs are “ethereal, evanescent, and mysterious” and she believes they can serve as a bridge “from the purely physical, temporal, body experience ... to what lies beyond.”\u003c/p>\n\u003cp>As for Cadbury, she says watching others die has helped her frame her daily life and what she hopes for her death. “Singing at the bedside of people who are dying has helped me appreciate being alive, has made more feel more alive and more into being the moment and enjoy life. I hope that when I am on the threshold someone will come and sing to me these beautiful, peaceful songs of comfort.”\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>Sager, the patient, says he believes as human beings our purpose in life is to be givers however we can. He says he did that as a chef, serving homemade nourishing food. He says he is proud of the Threshold Choir for offering their songs as a gift, “to receive that gift is an act of love and support, an act of care, which is what I need most in my life right now.\"\u003c/p>\n\n","blocks":[],"excerpt":"Founder says music serves as a bridge “from the purely physical temporal body experience ... to what lies beyond.”","status":"publish","parent":0,"modified":1466810683,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":29,"wordCount":1311},"headData":{"title":"'Threshold Choir' Brings Songs of Comfort to the Dying | KQED","description":"Founder says music serves as a bridge “from the purely physical temporal body experience ... to what lies beyond.”","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"195742 http://ww2.kqed.org/stateofhealth/?p=195742","disqusUrl":"https://ww2.kqed.org/stateofhealth/2016/06/11/threshold-choir-brings-songs-of-comfort-to-the-dying/","disqusTitle":"'Threshold Choir' Brings Songs of Comfort to the Dying","videoEmbed":"https://youtu.be/NR25A8C6hGU","nprByline":"\u003cstrong>Rachel Berger and Dina Maria Munsch\u003c/strong>","path":"/stateofhealth/195742/threshold-choir-brings-songs-of-comfort-to-the-dying","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Three women climb the stairs of a beautiful Victorian in San Francisco. They hold nothing in their hands, but they bring a precious gift. These women are members of the Threshold Choir, and the home they are visiting is the Zen Hospice Project. They sing to people at the last threshold of life, and today, when they reach the second floor, they find Luca Sager, a 38-year-old chef with terminal brain cancer.\u003c/p>\n\u003cp>Sager’s hands, tattooed with a salt and pepper shakers, rest on the top of his covers as he listens as the women sing, a cappella:\u003c/p>\n\u003cp>\u003cem>You are not alone\u003cbr>\nI am here now\u003cbr>\nWe are not alone\u003cbr>\nWe are here together\u003c/em>\u003c/p>\n\u003cp>Sager speaks slowly through medication and pain. He says peace fills him when the women sing. “It feels like a good time for me to gather my feelings about gratitude and being calm and appreciation. I just smile a lot.”\u003c/p>\n\u003cp>Kate Munger founded the Threshold Choir in Marin County and the East Bay 16 years ago. She says it grew out of her own experience of sitting with a friend of who was dying of AIDS back in the '90s.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“It was very distressing to see him comatose and agitated,” Munger recalls. “I did what I did at the time when I was nervous or afraid, and I started singing -- instinctively.”\u003c/p>\n\u003cp>She says her friend “calmed, settled and got positively serene,” and her own feelings mirrored those of her dying friend. “I felt like I had discovered, or rediscovered, something -- an ancient practice that tribal humans do for one another when someone’s struggling.”\u003c/p>\n\u003cfigure id=\"attachment_196124\" class=\"wp-caption aligncenter\" style=\"max-width: 1920px\">\u003cimg class=\"wp-image-196124 size-full\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/06/Threshold-Choir_Web-2.jpg\" alt=\"Threshold Choir_Web 2\" width=\"1920\" height=\"1080\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-2.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-2-400x225.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-2-800x450.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-2-768x432.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-2-1440x810.jpg 1440w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-2-1180x664.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-2-960x540.jpg 960w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003cfigcaption class=\"wp-caption-text\">Luca Sager, 38, who is terminally ill with brain cancer, listens to the Threshold Choir. They are \"an act of care,\" he says. \u003ccite>(Scott Stoneback for KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The \u003ca href=\"https://thresholdchoir.org\" target=\"_blank\">Threshold Choir\u003c/a> has spread since then -- across North America and to other countries. It is devoted to lifting others up, to creating a place for reflection, especially for people who may be outside the traditional reaches of religion. The singers speak of the healing quality of music and the power of the human voice to soothe and to make beautiful the process of dying, which is so often accompanied by great fear.\u003c/p>\n\u003cp>Choir singer Katharine Rose Kirner says she knows what it is like to lie powerless in bed facing the fear of death. In 2001, as the country was reeling from the 9/11 attacks, Kirner faced a different kind of threat, a brain tumor the size of a grapefruit. She says she was gripped by fear of death and feelings she had not done what she needed to do in her life. She vowed to do something “important” if she recuperated.\u003c/p>\n\u003cp>When she did eventually heal, she learned of the Threshold Choir and became a devoted member singing at least once a week. She says being part of the choir has given her a chance to see how gentle dying can be.\u003c/p>\n\u003cp>“Most of us think of death as an event, but it’s a process,\" she says. \"That gave me great comfort.” Watching the process has moved her to think of what she wants at her own death, something she says she would not have contemplated without being in the choir. \"I would have sat in the fear.”\u003c/p>\n\u003cfigure id=\"attachment_196122\" class=\"wp-caption aligncenter\" style=\"max-width: 1920px\">\u003cimg class=\"wp-image-196122 size-full\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/06/Threshold-Choir__Web-3.jpg\" alt=\"Threshold Choir__Web 3\" width=\"1920\" height=\"1080\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir__Web-3.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir__Web-3-400x225.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir__Web-3-800x450.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir__Web-3-768x432.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir__Web-3-1440x810.jpg 1440w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir__Web-3-1180x664.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir__Web-3-960x540.jpg 960w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003cfigcaption class=\"wp-caption-text\">Kate Munger, founder of the Threshold Choir. \u003ccite>(Scott Stoneback for KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Singer Peggy Cadbury, a retired nurse, saw a fair amount of death while working in hospital settings. But as a member of the choir, she has the chance to tend to the dying with a different intention. \u003c/p>\n\u003cp>“When you're nursing at the bedside of somebody who is dying, you're constantly concerned about their physical wellbeing, their pain level, ” Cadbury says. But as a member of the choir, “I can just be there to hold space for that person in the room and create an environment of comfort and caring.”\u003c/p>\n\u003cp>Munger says the harmonies are particularly powerful in creating a sense of calm and wellbeing. “It’s a visceral experience. It’s not just the ears; it's full body absorption of vibration.”\u003c/p>\n\u003cp>Cadbury says singing quietly and softly the simple songs written by choir members is much like singing a lullaby to a child. \u003c/p>\n\u003cp>“It is like a gentle caress, and it feels right,” she says.\u003c/p>\n\u003cp>Sager, the patient, says the singing not only helps bring him emotional calm, but it also reduces the physical pain he has in his head around the tumor.\u003c/p>\n\u003cp>Research suggests that listening to live music can help reduce pain in palliative care patients. A \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed/23017609\" target=\"_blank\">2012 study\u003c/a> found that patients found that patients who had the harp played to them for 20 minutes -- along with breathing exercises and visualization -- reported a significant decrease in pain compared to a control group.\u003c/p>\n\u003cp>Registered nurse and certified music therapist Kathy Jo Gutgsell at University Hospitals in Cleveland was lead author of the study. She believes music “may awaken the body’s own endorphins\" -- those much-chased-after chemicals that make us feel better about the world.\u003c/p>\n\u003cp>The human brain \"doesn’t multitask very well,\" she explains. \"When we are paying attention to the music, we can't pay attention to the pain.” \u003c/p>\n\u003cp>Gutgsell says music is tied to memories and can connect us to times of great joy and sadness. “I think humans are hardwired for music. Some people think we were singing before we were speaking back at the beginning of humanity.”\u003c/p>\n\u003cp>The Threshold Choir singers say they, too, are helped by the act of singing together and for a person in need. “You see them calm, and then you calm, and it’s a reciprocal thing,” Cadbury says.\u003c/p>\n\u003cp>Kirner says singing in the choir is one of the best things in her life. “I get a sense of purpose.” Choir singers may benefit in other ways. A growing body of research finds that people who take part in choral singing have a better sense of wellbeing than those who don’t sing.\u003c/p>\n\u003cfigure id=\"attachment_196125\" class=\"wp-caption aligncenter\" style=\"max-width: 1920px\">\u003cimg class=\"wp-image-196125 size-full\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/06/Threshold-Choir_Web-1-1.jpg\" alt=\"Threshold Choir_Web 1-1\" width=\"1920\" height=\"1080\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-1-1.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-1-1-400x225.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-1-1-800x450.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-1-1-768x432.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-1-1-1440x810.jpg 1440w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-1-1-1180x664.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2016/06/Threshold-Choir_Web-1-1-960x540.jpg 960w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003cfigcaption class=\"wp-caption-text\">From left, Peggy Cadbury, Katharine Rose Kirner and Karen Mooney, members of the Threshold Choir. \u003ccite>(Scott Stoneback for KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The research suggests that singing itself can raise levels of oxytocin, the hormone associated with trust and bonding. So people who sing in chorus may feel a strong bond with those they sing with together. Right now in San Francisco, a\u003ca href=\"http://ww2.kqed.org/stateofhealth/2013/08/20/in-san-francisco-seniors-are-singing-for-science/\" target=\"_blank\"> five-year study is underway\u003c/a> looking at both the possible physical and emotional benefits of choral singing for seniors.\u003c/p>\n\u003cp>Munger says songs are “ethereal, evanescent, and mysterious” and she believes they can serve as a bridge “from the purely physical, temporal, body experience ... to what lies beyond.”\u003c/p>\n\u003cp>As for Cadbury, she says watching others die has helped her frame her daily life and what she hopes for her death. “Singing at the bedside of people who are dying has helped me appreciate being alive, has made more feel more alive and more into being the moment and enjoy life. I hope that when I am on the threshold someone will come and sing to me these beautiful, peaceful songs of comfort.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Sager, the patient, says he believes as human beings our purpose in life is to be givers however we can. He says he did that as a chef, serving homemade nourishing food. He says he is proud of the Threshold Choir for offering their songs as a gift, “to receive that gift is an act of love and support, an act of care, which is what I need most in my life right now.\"\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/stateofhealth/195742/threshold-choir-brings-songs-of-comfort-to-the-dying","authors":["byline_stateofhealth_195742"],"categories":["stateofhealth_12"],"tags":["stateofhealth_2598","stateofhealth_40","stateofhealth_2519"],"featImg":"stateofhealth_196123","label":"stateofhealth"},"stateofhealth_192287":{"type":"posts","id":"stateofhealth_192287","meta":{"index":"posts_1591205157","site":"stateofhealth","id":"192287","score":null,"sort":[1464885108000]},"guestAuthors":[],"slug":"berkeley-physician-opens-practice-focusing-on-aid-in-dying","title":"Berkeley Physician Opens Practice Focusing on Aid-in-Dying","publishDate":1464885108,"format":"standard","headTitle":"State of Health | KQED News","labelTerm":{"site":"stateofhealth"},"content":"\u003cp>Few people have the unusual set of professional experiences that Lonny Shavelson does. He worked as an emergency room physician in Berkeley for years -- while also working as a journalist. He has written several books and takes hauntingly beautiful photographs.\u003c/p>\n\u003caside class=\"pullquote alignright\">'This can only work when you're sure that the patients have been given the best end-of-life care, which to me is most guaranteed by being a part of hospice or at least having a good palliative care physician.' \u003ccite>Dr. Lonny Shavelson \u003c/cite>\u003c/aside>\n\u003cp>Now he'll add another specialty. Just as California's \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billHistoryClient.xhtml?bill_id=201520162AB15\" target=\"_blank\">End of Life Option Act\u003c/a>, a law legalizing physician aid-in-dying for people who are terminally ill, is set to take effect next week, Shavelson has become a consultant aimed at answering questions from physicians and patients about the practice -- even becoming a physician to terminally ill patients seeking to end their lives.\u003c/p>\n\u003cp>I first met Shavelson in 1996 as I was covering the reaction to Oregon voters' approval of \u003ca href=\"https://ballotpedia.org/Oregon_%22Death_with_Dignity%22,_Measure_16_(1994)\" target=\"_blank\">Measure 16, the state's Death with Dignity Act\u003c/a>.\u003c/p>\n\u003cp>Oregon was the first state to approve the practice, and in 1996 the law was held up in court. I turned to Shavelson as he had published \"\u003ca href=\"http://www.photowords.com/index.php?page=books\" target=\"_blank\">A Chosen Death\u003c/a>,\" a moving book following five terminally ill people over two years as they determined whether to amass drugs on their own and end their lives at a time of their choosing. He was present at the death of all of them.\u003c/p>\n\u003cp>He followed the issue of assisted suicide closely for several years more, but ultimately moved on to other major projects -- among them \u003ca href=\"http://www.photowords.com/index.php?page=books\" target=\"_blank\">a book about addiction\u003c/a> and a \u003ca href=\"http://www.threetoinfinity.com\" target=\"_blank\">documentary\u003c/a> about people who identify as neither male nor female.\u003c/p>\n\u003cfigure id=\"attachment_192314\" class=\"wp-caption aligncenter\" style=\"max-width: 1920px\">\u003cimg class=\"size-full wp-image-192314\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/06/lonnybooks-e1464884484238.jpg\" alt=\"The wall of Lonny Shavelson's office, lined with covers of the books he has written. \" width=\"1920\" height=\"1440\">\u003cfigcaption class=\"wp-caption-text\">The wall of Lonny Shavelson's office, lined with covers of the books he has written. \u003ccite>(Lisa Aliferis/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Then last fall came the \u003ca href=\"http://ww2.kqed.org/stateofhealth/2015/10/05/governor-brown-signs-physician-assisted-suicide-bill-into-law-california-right-to-die/\" target=\"_blank\">surprising passage of California's End of Life Option Act,\u003c/a> giving terminally ill adults with six months to live the right to request lethal medication to end their lives. The law takes effect June 9.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Shavelson decided he had to act, although he feels \"quite guilty\" about having been away from the issue while others pushed it forward.\u003c/p>\n\u003cp>\"Can I just sit back and watch?\" Shavelson told me from his cottage office in his backyard in Berkeley. \"This is really an amazing opportunity to be part of establishing policy and initiating something in medicine. This is a major change ... [that] very, very few people know anything about and how to do it.\"\u003c/p>\n\u003cp>His website, \u003ca href=\"https://bayareaendoflifeoptions.com\" target=\"_blank\">Bay Area End of Life Options,\u003c/a> went up in April, and he's outlined the law at \"grand rounds\" at several Bay Area hospitals this spring. His practice will be focused on consulting not only with physicians whose patients request aid-in-dying, but also with patients themselves, including offering care to patients who choose him as their \"attending End-of-Life physician,\" as he indicates on his site.\u003c/p>\n\u003cp>Shavelson is adamant that this is \"something that has to be done right.\" To him, that means starting every patient encounter with a one-word question: \"Why?\"\u003c/p>\n\u003cp>\"In fact, it's the only initial approach that I think is acceptable. If somebody calls me and says, 'I want to take the medication,' my first question is, why? Let me talk to you about all the various alternatives and all the ways that we can think about this,\" he predicts he will say.\u003c/p>\n\u003cp>Shavelson worries that patients may seek aid-in-dying because they are in pain, so first, he would like all his patients to be enrolled in hospice care.\u003c/p>\n\u003cp>\"This can only work when you're sure that the patients have been given the best end-of-life care, which to me is most guaranteed by being a part of hospice or at least having a good palliative care physician. Then this is a rational decision. If you're doing it otherwise, it's because of lack of good care.\"\u003c/p>\n\u003cp>California is the fifth state to legalize aid-in-dying, joining Oregon, Washington, Vermont and Montana. The option is very rarely used. For example, in \u003ca href=\"http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year17.pdf\" target=\"_blank\">2014 in Oregon\u003c/a>, 155 lethal prescriptions were written under the state's law, and 105 people ultimately took the medicine and died, a death rate under this method of less than 0.5 percent.\u003c/p>\n\u003cp>Under the law, two doctors must agree that a mentally competent patient has six months or less to live. One of the patient-doctor meetings must be private, between only the patient and the physician, to ensure the patient is acting independently. Patients must be able to swallow the medication themselves and must state, in writing, within 48 hours before taking the medication, that they will do so.\u003c/p>\n\u003cp>Shavelson says he has been surprised by the lack of understanding he hears from some health care providers about the law. One person insisted the law was not taking effect this year; another asked how the law would benefit his patients with Alzheimer's disease. To be clear, the law takes effect next week, and patients with dementia cannot access the law because they are not mentally competent.\u003c/p>\n\u003cfigure id=\"attachment_192674\" class=\"wp-caption alignright\" style=\"max-width: 400px\">\u003cimg class=\"wp-image-192674 size-thumbnail\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/06/Renee-1-copy-400x598.jpg\" alt='Renee Sahm, one of five terminally ill people followed by Lonny Shavelson in his 1994 book \"A Chosen Death.\"' width=\"400\" height=\"598\">\u003cfigcaption class=\"wp-caption-text\">Renee Sahm, one of five terminally ill people followed by Lonny Shavelson in his 1995 book \"A Chosen Death.\" \u003ccite>(Courtesy: Lonny Shavelson)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The law does not mandate participation by any health care providers. Many physicians are \"queasy\" with the new law, Shavelson says he's hearing, and are unwilling to prescribe to patients who request the lethal medication -- even though they tell him they think the law is the right thing to do.\u003c/p>\n\u003cp>\"My response to that is as health care providers, you might have been uncomfortable the first time you drew blood. You might have been uncomfortable the first time you took out somebody's gall bladder,\" he says. \"If it's a medical procedure you believe in and you believe it's the patient's right, then it's your obligation to learn how to do it -- and do it correctly.\"\u003c/p>\n\u003cp>Shavelson said he predicts that many physicians who are initially reluctant to provide this option to their patients may become more comfortable after the law goes into effect and they see how it works.\u003c/p>\n\u003cp>Burt Presberg, an East Bay psychiatrist who works specifically with cancer patients and their families, said a talk he attended by Shavelson sparked a conversation at his practice. Yet, in my own talk with him, he peppered his statements with \"on the other hand,\" as he clearly wrestled with his own comfort level of handling patient requests.\u003c/p>\n\u003cp>Presberg spoke of his concern that patients suffer from clinical depression at the end of life, sometimes feeling they are a burden to family members who could \"really push for the end of life to happen a little sooner than the patient themselves.\" He spoke from his experience of successfully treating terminally ill patients with clinical depression.\u003c/p>\n\u003cp>\"Depression is something that's really undertreated,\" Presberg said. \"I often talk to people about the difference between normal sadness and normal grieving at the end of life.\"\u003c/p>\n\u003cp>He said he believes Shavelson will be aware of treating depression, \"but I do have concerns about other physicians,\" he said. \"On the other hand, I think it's really good that this is an option.\"\u003c/p>\n\u003cp>Shavelson says he's already received a handful of calls from patients, but he's mostly spent this time before the law takes effect talking to other physicians. He needs a consulting physician and a pharmacist that will accept prescriptions for the lethal dose of medicine.\u003c/p>\n\u003cp>Then he returns to the patient. \"It's important ... that we're moving forward,\" he says. \"It's crucial that we do that because this is part of the rights of patient care to have a certain level of autonomy in how they die.\"\u003c/p>\n\u003cp>To many of the doctors who feel \"queasy\" about moving to end a patient's life, this type of care \"isn't so tangibly different to me,\" Shavelson says, than other kinds of questions doctors address.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\"I'm just one of those docs who sees dying as a process, and method of death is less important than making sure it's a good death.\"\u003c/p>\n\n","blocks":[],"excerpt":"California's law permitting doctors to prescribe lethal medications to terminally ill patients who request it takes effect next week.","status":"publish","parent":0,"modified":1465000662,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":29,"wordCount":1372},"headData":{"title":"Berkeley Physician Opens Practice Focusing on Aid-in-Dying | KQED","description":"California's law permitting doctors to prescribe lethal medications to terminally ill patients who request it takes effect next week.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"192287 http://ww2.kqed.org/stateofhealth/?p=192287","disqusUrl":"https://ww2.kqed.org/stateofhealth/2016/06/02/berkeley-physician-opens-practice-focusing-on-aid-in-dying/","disqusTitle":"Berkeley Physician Opens Practice Focusing on Aid-in-Dying","path":"/stateofhealth/192287/berkeley-physician-opens-practice-focusing-on-aid-in-dying","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Few people have the unusual set of professional experiences that Lonny Shavelson does. He worked as an emergency room physician in Berkeley for years -- while also working as a journalist. He has written several books and takes hauntingly beautiful photographs.\u003c/p>\n\u003caside class=\"pullquote alignright\">'This can only work when you're sure that the patients have been given the best end-of-life care, which to me is most guaranteed by being a part of hospice or at least having a good palliative care physician.' \u003ccite>Dr. Lonny Shavelson \u003c/cite>\u003c/aside>\n\u003cp>Now he'll add another specialty. Just as California's \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billHistoryClient.xhtml?bill_id=201520162AB15\" target=\"_blank\">End of Life Option Act\u003c/a>, a law legalizing physician aid-in-dying for people who are terminally ill, is set to take effect next week, Shavelson has become a consultant aimed at answering questions from physicians and patients about the practice -- even becoming a physician to terminally ill patients seeking to end their lives.\u003c/p>\n\u003cp>I first met Shavelson in 1996 as I was covering the reaction to Oregon voters' approval of \u003ca href=\"https://ballotpedia.org/Oregon_%22Death_with_Dignity%22,_Measure_16_(1994)\" target=\"_blank\">Measure 16, the state's Death with Dignity Act\u003c/a>.\u003c/p>\n\u003cp>Oregon was the first state to approve the practice, and in 1996 the law was held up in court. I turned to Shavelson as he had published \"\u003ca href=\"http://www.photowords.com/index.php?page=books\" target=\"_blank\">A Chosen Death\u003c/a>,\" a moving book following five terminally ill people over two years as they determined whether to amass drugs on their own and end their lives at a time of their choosing. He was present at the death of all of them.\u003c/p>\n\u003cp>He followed the issue of assisted suicide closely for several years more, but ultimately moved on to other major projects -- among them \u003ca href=\"http://www.photowords.com/index.php?page=books\" target=\"_blank\">a book about addiction\u003c/a> and a \u003ca href=\"http://www.threetoinfinity.com\" target=\"_blank\">documentary\u003c/a> about people who identify as neither male nor female.\u003c/p>\n\u003cfigure id=\"attachment_192314\" class=\"wp-caption aligncenter\" style=\"max-width: 1920px\">\u003cimg class=\"size-full wp-image-192314\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/06/lonnybooks-e1464884484238.jpg\" alt=\"The wall of Lonny Shavelson's office, lined with covers of the books he has written. \" width=\"1920\" height=\"1440\">\u003cfigcaption class=\"wp-caption-text\">The wall of Lonny Shavelson's office, lined with covers of the books he has written. \u003ccite>(Lisa Aliferis/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Then last fall came the \u003ca href=\"http://ww2.kqed.org/stateofhealth/2015/10/05/governor-brown-signs-physician-assisted-suicide-bill-into-law-california-right-to-die/\" target=\"_blank\">surprising passage of California's End of Life Option Act,\u003c/a> giving terminally ill adults with six months to live the right to request lethal medication to end their lives. The law takes effect June 9.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Shavelson decided he had to act, although he feels \"quite guilty\" about having been away from the issue while others pushed it forward.\u003c/p>\n\u003cp>\"Can I just sit back and watch?\" Shavelson told me from his cottage office in his backyard in Berkeley. \"This is really an amazing opportunity to be part of establishing policy and initiating something in medicine. This is a major change ... [that] very, very few people know anything about and how to do it.\"\u003c/p>\n\u003cp>His website, \u003ca href=\"https://bayareaendoflifeoptions.com\" target=\"_blank\">Bay Area End of Life Options,\u003c/a> went up in April, and he's outlined the law at \"grand rounds\" at several Bay Area hospitals this spring. His practice will be focused on consulting not only with physicians whose patients request aid-in-dying, but also with patients themselves, including offering care to patients who choose him as their \"attending End-of-Life physician,\" as he indicates on his site.\u003c/p>\n\u003cp>Shavelson is adamant that this is \"something that has to be done right.\" To him, that means starting every patient encounter with a one-word question: \"Why?\"\u003c/p>\n\u003cp>\"In fact, it's the only initial approach that I think is acceptable. If somebody calls me and says, 'I want to take the medication,' my first question is, why? Let me talk to you about all the various alternatives and all the ways that we can think about this,\" he predicts he will say.\u003c/p>\n\u003cp>Shavelson worries that patients may seek aid-in-dying because they are in pain, so first, he would like all his patients to be enrolled in hospice care.\u003c/p>\n\u003cp>\"This can only work when you're sure that the patients have been given the best end-of-life care, which to me is most guaranteed by being a part of hospice or at least having a good palliative care physician. Then this is a rational decision. If you're doing it otherwise, it's because of lack of good care.\"\u003c/p>\n\u003cp>California is the fifth state to legalize aid-in-dying, joining Oregon, Washington, Vermont and Montana. The option is very rarely used. For example, in \u003ca href=\"http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year17.pdf\" target=\"_blank\">2014 in Oregon\u003c/a>, 155 lethal prescriptions were written under the state's law, and 105 people ultimately took the medicine and died, a death rate under this method of less than 0.5 percent.\u003c/p>\n\u003cp>Under the law, two doctors must agree that a mentally competent patient has six months or less to live. One of the patient-doctor meetings must be private, between only the patient and the physician, to ensure the patient is acting independently. Patients must be able to swallow the medication themselves and must state, in writing, within 48 hours before taking the medication, that they will do so.\u003c/p>\n\u003cp>Shavelson says he has been surprised by the lack of understanding he hears from some health care providers about the law. One person insisted the law was not taking effect this year; another asked how the law would benefit his patients with Alzheimer's disease. To be clear, the law takes effect next week, and patients with dementia cannot access the law because they are not mentally competent.\u003c/p>\n\u003cfigure id=\"attachment_192674\" class=\"wp-caption alignright\" style=\"max-width: 400px\">\u003cimg class=\"wp-image-192674 size-thumbnail\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/06/Renee-1-copy-400x598.jpg\" alt='Renee Sahm, one of five terminally ill people followed by Lonny Shavelson in his 1994 book \"A Chosen Death.\"' width=\"400\" height=\"598\">\u003cfigcaption class=\"wp-caption-text\">Renee Sahm, one of five terminally ill people followed by Lonny Shavelson in his 1995 book \"A Chosen Death.\" \u003ccite>(Courtesy: Lonny Shavelson)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The law does not mandate participation by any health care providers. Many physicians are \"queasy\" with the new law, Shavelson says he's hearing, and are unwilling to prescribe to patients who request the lethal medication -- even though they tell him they think the law is the right thing to do.\u003c/p>\n\u003cp>\"My response to that is as health care providers, you might have been uncomfortable the first time you drew blood. You might have been uncomfortable the first time you took out somebody's gall bladder,\" he says. \"If it's a medical procedure you believe in and you believe it's the patient's right, then it's your obligation to learn how to do it -- and do it correctly.\"\u003c/p>\n\u003cp>Shavelson said he predicts that many physicians who are initially reluctant to provide this option to their patients may become more comfortable after the law goes into effect and they see how it works.\u003c/p>\n\u003cp>Burt Presberg, an East Bay psychiatrist who works specifically with cancer patients and their families, said a talk he attended by Shavelson sparked a conversation at his practice. Yet, in my own talk with him, he peppered his statements with \"on the other hand,\" as he clearly wrestled with his own comfort level of handling patient requests.\u003c/p>\n\u003cp>Presberg spoke of his concern that patients suffer from clinical depression at the end of life, sometimes feeling they are a burden to family members who could \"really push for the end of life to happen a little sooner than the patient themselves.\" He spoke from his experience of successfully treating terminally ill patients with clinical depression.\u003c/p>\n\u003cp>\"Depression is something that's really undertreated,\" Presberg said. \"I often talk to people about the difference between normal sadness and normal grieving at the end of life.\"\u003c/p>\n\u003cp>He said he believes Shavelson will be aware of treating depression, \"but I do have concerns about other physicians,\" he said. \"On the other hand, I think it's really good that this is an option.\"\u003c/p>\n\u003cp>Shavelson says he's already received a handful of calls from patients, but he's mostly spent this time before the law takes effect talking to other physicians. He needs a consulting physician and a pharmacist that will accept prescriptions for the lethal dose of medicine.\u003c/p>\n\u003cp>Then he returns to the patient. \"It's important ... that we're moving forward,\" he says. \"It's crucial that we do that because this is part of the rights of patient care to have a certain level of autonomy in how they die.\"\u003c/p>\n\u003cp>To many of the doctors who feel \"queasy\" about moving to end a patient's life, this type of care \"isn't so tangibly different to me,\" Shavelson says, than other kinds of questions doctors address.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\"I'm just one of those docs who sees dying as a process, and method of death is less important than making sure it's a good death.\"\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/stateofhealth/192287/berkeley-physician-opens-practice-focusing-on-aid-in-dying","authors":["240"],"categories":["stateofhealth_2407","stateofhealth_13"],"tags":["stateofhealth_914","stateofhealth_40","stateofhealth_2519","stateofhealth_754"],"featImg":"stateofhealth_192726","label":"stateofhealth"},"stateofhealth_146916":{"type":"posts","id":"stateofhealth_146916","meta":{"index":"posts_1591205157","site":"stateofhealth","id":"146916","score":null,"sort":[1455300701000]},"guestAuthors":[],"slug":"stanford-neurosurgeon-paul-kalanithi-memoir-widow","title":"Inside A Doctor's Mind At The End Of His Life","publishDate":1455300701,"format":"standard","headTitle":"State of Health | KQED News","labelTerm":{"site":"stateofhealth"},"content":"\u003cp>Dr. Paul Kalanithi was preparing to wrap up his medical residency in neurosurgery when, in 2013, a CT scan revealed tumors throughout his body. He had stage 4 lung cancer.\u003c/p>\n\u003cp>In his last two years of life, he continued caring for patients. He and his wife became parents. And Kalanithi, a gifted writer, wrote a book, \u003cem>When Breath Becomes Air, \u003c/em>a reflection on being a doctor with a terminal illness.\u003c/p>\n\u003cp>He \u003ca href=\"http://ww2.kqed.org/news/2015/03/12/dr-paul-kalanithi-stanford-writer-and-neurosurgeon-dies-at-37\" target=\"_blank\">died\u003c/a> March 9, 2015. He was 37 years old.\u003c/p>\n\u003cfigure id=\"attachment_146919\" class=\"wp-caption alignright\" style=\"max-width: 294px\">\u003cimg class=\"wp-image-146919 size-full\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/02/Screen-Shot-2016-02-12-at-9.49.26-AM.png\" alt=\"When Breath Becomes Air by Paul Kalanithi Hardcover, 228 pages\" width=\"294\" height=\"445\">\u003cfigcaption class=\"wp-caption-text\">When Breath Becomes Air\u003cbr> by Paul Kalanithi\u003cbr> Hardcover, 228 pages\u003c/figcaption>\u003c/figure>\n\u003cp>His widow, Dr. Lucy Kalanithi, is on a book tour for \u003cem>\u003ca href=\"http://www.npr.org/books/titles/463803406/when-breath-becomes-air\" target=\"_blank\">When Breath Becomes Air\u003c/a>,\u003c/em> which has resonated with a wide audience.\u003c/p>\n\u003cp>\"It's really kind of a bittersweet process, as you can imagine, quite bitter and quite sweet,\" she tells NPR's David Greene. \"Paul died nearly 11 months ago, but being able to talk about how I feel and remember Paul is actually very healing for me. So it's actually kind of wonderful at the same time.\"\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>In her interview on \u003cem>Morning Edition,\u003c/em> she reads excerpts from \u003cem>When Breath Becomes Air \u003c/em>and talks about her late husband's life.\u003c/p>\n\u003chr>\n\u003ch3>\u003cstrong>Interview Highlights\u003c/strong>\u003c/h3>\n\u003cp>\u003cstrong>On the cancer spreading to his brain and having a neurological impact\u003c/strong>\u003c/p>\n\u003cp>Would you trade your ability to speak for another five months of life, or what type of neurologic devastation would make it more reasonable to stop living than to be alive? And these are not theoretical questions in the neurosurgical context. ...\u003c/p>\n\u003cp>Yeah, that was very hard. This whole second half of the book is Paul thinking about how to grapple, in a very real way, with his own mortality. And then when he was diagnosed with a form of metastatic brain cancer called \u003ca href=\"https://www.mskcc.org/cancer-care/patient-education/leptomeningeal-metastases\">leptomeningeal disease\u003c/a> — it's essentially like tumors are coating your brain and your spinal cord, and it also holds the prospect of seizures or trouble speaking, trouble thinking. So, it was so intense to get this diagnosis on top of everything else that meant that his ability to participate in all of the things that were bringing him meaning — particularly writing this book and being together with our daughter and our family — was really devastating.\u003c/p>\n\u003cp>\u003cstrong>On their daughter, Elizabeth Acadia Kalanithi\u003c/strong>\u003c/p>\n\u003cp>He was just thrilled to be a dad, and just the fact of having this infant just breathed this unbelievable life into our house. He was the one who initially had the strong instinct to have a child despite his illness. ... I said to Paul, \"Don't you think that saying goodbye to a child would make your death more painful?\" And he said, \"Wouldn't it be great if it did?\" And what he meant by that was the joy and meaning of having a new family member is so great that wouldn't it be great if that made it even more painful?\u003c/p>\n\u003cp>\u003cstrong>On whether Paul's illness and death gave him the opportunity to help others through similar journeys\u003c/strong>\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Yeah, it's sort of bringing tears to my eyes ... because he makes this joke in the book where he says something like, \"Wouldn't a terminal illness be the perfect gift to this young man who hoped to grasp mortality in a kind of intellectual sense?\" Those questions became not at all theoretical. Paul really had to draw on all these things that he had been developing his whole life — he really returned to literature to cope, he fell back on his training as a physician. ... What a funny confluence of factors that would prepare a young person to face this in a particular way despite looking at the fiery light of illness in real time.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Inside+A+Doctor%27s+Mind+At+The+End+Of+His+Life&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\" alt=\"\">\u003c/div>\n\n","blocks":[],"excerpt":"Stanford's Dr. Paul Kalanithi was finishing his residency when he was diagnosed with terminal lung cancer. His memoir deals with the struggle and the joy of life as death drew near.","status":"publish","parent":0,"modified":1455325446,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":15,"wordCount":626},"headData":{"title":"Inside A Doctor's Mind At The End Of His Life | KQED","description":"Stanford's Dr. Paul Kalanithi was finishing his residency when he was diagnosed with terminal lung cancer. His memoir deals with the struggle and the joy of life as death drew near.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"146916 http://ww2.kqed.org/stateofhealth/?p=146916","disqusUrl":"https://ww2.kqed.org/stateofhealth/2016/02/12/stanford-neurosurgeon-paul-kalanithi-memoir-widow/","disqusTitle":"Inside A Doctor's Mind At The End Of His Life","nprByline":"NPR Staff","nprImageAgency":"Courtesy of Lucy Kalanithi ","nprStoryId":"466189316","nprApiLink":"http://api.npr.org/query?id=466189316&apiKey=MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004","nprHtmlLink":"http://www.npr.org/sections/health-shots/2016/02/12/466189316/inside-a-doctors-mind-at-the-end-of-his-life?ft=nprml&f=466189316","nprRetrievedStory":"1","nprPubDate":"Fri, 12 Feb 2016 10:09:00 -0500","nprStoryDate":"Fri, 12 Feb 2016 05:00:00 -0500","nprLastModifiedDate":"Fri, 12 Feb 2016 10:09:06 -0500","nprAudio":"http://pd.npr.org/anon.npr-mp3/npr/me/2016/02/20160212_me_inside_a_doctors_mind_at_the_end_of_his_life.mp3?orgId=1&topicId=1033&d=439&p=3&story=466189316&t=progseg&e=466511666&seg=9&ft=nprml&f=466189316","nprAudioM3u":"http://api.npr.org/m3u/1466512375-666b02.m3u?orgId=1&topicId=1033&d=439&p=3&story=466189316&t=progseg&e=466511666&seg=9&ft=nprml&f=466189316","path":"/stateofhealth/146916/stanford-neurosurgeon-paul-kalanithi-memoir-widow","audioUrl":"http://pd.npr.org/anon.npr-mp3/npr/me/2016/02/20160212_me_inside_a_doctors_mind_at_the_end_of_his_life.mp3?orgId=1&topicId=1033&d=439&p=3&story=466189316&t=progseg&e=466511666&seg=9&ft=nprml&f=466189316","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Dr. Paul Kalanithi was preparing to wrap up his medical residency in neurosurgery when, in 2013, a CT scan revealed tumors throughout his body. He had stage 4 lung cancer.\u003c/p>\n\u003cp>In his last two years of life, he continued caring for patients. He and his wife became parents. And Kalanithi, a gifted writer, wrote a book, \u003cem>When Breath Becomes Air, \u003c/em>a reflection on being a doctor with a terminal illness.\u003c/p>\n\u003cp>He \u003ca href=\"http://ww2.kqed.org/news/2015/03/12/dr-paul-kalanithi-stanford-writer-and-neurosurgeon-dies-at-37\" target=\"_blank\">died\u003c/a> March 9, 2015. He was 37 years old.\u003c/p>\n\u003cfigure id=\"attachment_146919\" class=\"wp-caption alignright\" style=\"max-width: 294px\">\u003cimg class=\"wp-image-146919 size-full\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/02/Screen-Shot-2016-02-12-at-9.49.26-AM.png\" alt=\"When Breath Becomes Air by Paul Kalanithi Hardcover, 228 pages\" width=\"294\" height=\"445\">\u003cfigcaption class=\"wp-caption-text\">When Breath Becomes Air\u003cbr> by Paul Kalanithi\u003cbr> Hardcover, 228 pages\u003c/figcaption>\u003c/figure>\n\u003cp>His widow, Dr. Lucy Kalanithi, is on a book tour for \u003cem>\u003ca href=\"http://www.npr.org/books/titles/463803406/when-breath-becomes-air\" target=\"_blank\">When Breath Becomes Air\u003c/a>,\u003c/em> which has resonated with a wide audience.\u003c/p>\n\u003cp>\"It's really kind of a bittersweet process, as you can imagine, quite bitter and quite sweet,\" she tells NPR's David Greene. \"Paul died nearly 11 months ago, but being able to talk about how I feel and remember Paul is actually very healing for me. So it's actually kind of wonderful at the same time.\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>In her interview on \u003cem>Morning Edition,\u003c/em> she reads excerpts from \u003cem>When Breath Becomes Air \u003c/em>and talks about her late husband's life.\u003c/p>\n\u003chr>\n\u003ch3>\u003cstrong>Interview Highlights\u003c/strong>\u003c/h3>\n\u003cp>\u003cstrong>On the cancer spreading to his brain and having a neurological impact\u003c/strong>\u003c/p>\n\u003cp>Would you trade your ability to speak for another five months of life, or what type of neurologic devastation would make it more reasonable to stop living than to be alive? And these are not theoretical questions in the neurosurgical context. ...\u003c/p>\n\u003cp>Yeah, that was very hard. This whole second half of the book is Paul thinking about how to grapple, in a very real way, with his own mortality. And then when he was diagnosed with a form of metastatic brain cancer called \u003ca href=\"https://www.mskcc.org/cancer-care/patient-education/leptomeningeal-metastases\">leptomeningeal disease\u003c/a> — it's essentially like tumors are coating your brain and your spinal cord, and it also holds the prospect of seizures or trouble speaking, trouble thinking. So, it was so intense to get this diagnosis on top of everything else that meant that his ability to participate in all of the things that were bringing him meaning — particularly writing this book and being together with our daughter and our family — was really devastating.\u003c/p>\n\u003cp>\u003cstrong>On their daughter, Elizabeth Acadia Kalanithi\u003c/strong>\u003c/p>\n\u003cp>He was just thrilled to be a dad, and just the fact of having this infant just breathed this unbelievable life into our house. He was the one who initially had the strong instinct to have a child despite his illness. ... I said to Paul, \"Don't you think that saying goodbye to a child would make your death more painful?\" And he said, \"Wouldn't it be great if it did?\" And what he meant by that was the joy and meaning of having a new family member is so great that wouldn't it be great if that made it even more painful?\u003c/p>\n\u003cp>\u003cstrong>On whether Paul's illness and death gave him the opportunity to help others through similar journeys\u003c/strong>\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Yeah, it's sort of bringing tears to my eyes ... because he makes this joke in the book where he says something like, \"Wouldn't a terminal illness be the perfect gift to this young man who hoped to grasp mortality in a kind of intellectual sense?\" Those questions became not at all theoretical. Paul really had to draw on all these things that he had been developing his whole life — he really returned to literature to cope, he fell back on his training as a physician. ... What a funny confluence of factors that would prepare a young person to face this in a particular way despite looking at the fiery light of illness in real time.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Inside+A+Doctor%27s+Mind+At+The+End+Of+His+Life&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\" alt=\"\">\u003c/div>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/stateofhealth/146916/stanford-neurosurgeon-paul-kalanithi-memoir-widow","authors":["byline_stateofhealth_146916"],"categories":["stateofhealth_12"],"tags":["stateofhealth_40"],"featImg":"stateofhealth_146917","label":"stateofhealth"},"stateofhealth_136331":{"type":"posts","id":"stateofhealth_136331","meta":{"index":"posts_1591205157","site":"stateofhealth","id":"136331","score":null,"sort":[1452291586000]},"guestAuthors":[],"slug":"a-sick-newborn-a-loving-family-and-a-litany-of-wrenching-choices","title":"A Sick Newborn, A Loving Family and A Litany of Wrenching Choices","publishDate":1452291586,"format":"standard","headTitle":"State of Health | KQED News","labelTerm":{},"content":"\u003cp>Anne and Omar Shamiyeh first learned something was wrong with one of their twins during an ultrasound, when Anne was 18 weeks pregnant.\u003c/p>\n\u003cp>\"The technician was, like, 'Well, there's no visualization of his stomach,'\" says Anne. \"And I was like, 'How does our baby have no stomach?' \"\u003c/p>\n\u003cp>It turned out that the baby's esophagus was not connected to his stomach. He also had a heart defect. At the very least, he was likely to face surgeries and a long stay in intensive care. He might have lifelong disabilities.\u003c/p>\n\u003cp>This was only the start of an eight-month ordeal for the Shamiyeh family.\u003c/p>\n\u003cp>[soundcloud url=\"https://api.soundcloud.com/tracks/241060950\" params=\"color=ff5500&auto_play=false&hide_related=false&show_comments=true&show_user=true&show_reposts=false\" width=\"100%\" height=\"166\" iframe=\"true\" /]\u003c/p>\n\u003cp>Decisions about how much care to offer very sick family members are always challenging. But they can be particularly wrenching for parents like the Shamiyehs, who face harrowing choices during what is supposed to be a wonderful time — the start of a life.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>As doctors and families consider how far to push medical care, a chasm can open between the parents' hopes and what providers consider realistic.\u003c/p>\n\u003cp>For the Shamiyehs, the first major decision was whether to \"selectively reduce,\" the clinical term for aborting one fetus in a multiple pregnancy. \"Omar and I were very uncomfortable with that,\" Anne says. \"We really wanted to see what he was going to be like, and what life had to offer.\"\u003c/p>\n\u003cp>That decision meant the twins, a boy and a girl, would likely be born prematurely. As it turned out, they were delivered by cesarean section at 30 weeks — about two months early — at UCSF Benioff Children's Hospital, in San Francisco.\u003c/p>\n\u003cp>The boy was named Kai, the girl Malia. Each weighed about 3 pounds. They were rushed immediately to the neonatal intensive care unit. That night Kai had his first surgery.\u003c/p>\n\u003cp>Malia went home after about five weeks. But Kai was far from ready. He was on a ventilator, had to be fed through a tube directly into his stomach and was still struggling to survive. Eventually, he was diagnosed with \u003ca href=\"http://www.chargesyndrome.org/about-charge.asp\" target=\"_blank\">CHARGE syndrome\u003c/a> — a rare genetic condition that can result in severe cognitive and physical disabilities.\u003c/p>\n\u003cfigure id=\"attachment_136337\" class=\"wp-caption aligncenter\" style=\"max-width: 1780px\">\u003cimg class=\"wp-image-136337 size-full\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2015/11/shamiyeh-12small-2f176b34a82e823212962a085679b964c0079eb8.jpg\" alt=\"Omar looks through Kai's photo book. The charges for the infant's six months of care in the neonatal intensive care unit totaled about $11 million, according to the family, though their insurer very likely negotiated a lower rate.\" width=\"1780\" height=\"1335\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-12small-2f176b34a82e823212962a085679b964c0079eb8.jpg 1780w, https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-12small-2f176b34a82e823212962a085679b964c0079eb8-400x300.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-12small-2f176b34a82e823212962a085679b964c0079eb8-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-12small-2f176b34a82e823212962a085679b964c0079eb8-768x576.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-12small-2f176b34a82e823212962a085679b964c0079eb8-1440x1080.jpg 1440w, https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-12small-2f176b34a82e823212962a085679b964c0079eb8-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-12small-2f176b34a82e823212962a085679b964c0079eb8-960x720.jpg 960w\" sizes=\"(max-width: 1780px) 100vw, 1780px\">\u003cfigcaption class=\"wp-caption-text\">Omar looks through Kai's photo book. The charges for the infant's six months of care in the neonatal intensive care unit totaled about $11 million, according to the family, though their insurer very likely negotiated a lower rate. \u003ccite>(Heidi de Marco/KHN)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>About the time Malia went home, the doctors and nurses sat down with the Shamiyehs to discuss Kai's treatment. They needed to know whether the family wanted a tracheostomy — surgeons would insert a breathing tube directly into Kai's neck to ease passage of air into his lungs.\u003c/p>\n\u003cp>\"It seemed awful,\" Anne recalls. \"We were both really unhappy with that, but we understood it wasn't a choice. It was something we had to do.\"\u003c/p>\n\u003cp>But \u003ca href=\"https://www.ucsfbenioffchildrens.org/elizabeth.rogers\" target=\"_blank\">Dr. Liz Rogers\u003c/a>, a UCSF neonatologist who cared for Kai, saw it as a significant decision.\u003c/p>\n\u003cp>\"To be very honest,\" Rogers says, \"for many, many of our families, the point of decision around a tracheostomy is a major, major time when families say, 'This has gone on for too long, and it's not what I want for him.' \"\u003c/p>\n\u003cp>Anne had real hope for Kai's future, despite the pessimism of some doctors.\u003c/p>\n\u003cp>\"I kept thinking, maybe that doctor's view of quality of life is different from mine. And maybe, for me, loving my child and having him feel love is enough,\" Anne says. \"And it's OK if he can't talk. Maybe he'll wear a diaper until he's 5, and maybe he'll be in a wheelchair, but that's OK. Because he'll be alive, and he'll be my child.\"\u003c/p>\n\u003cp>Studies \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed/10359387\">suggest\u003c/a> that health care providers do tend to have a \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed/24112219\">different view\u003c/a> of quality of life than parents do. In Kai's case, many of his day-to-day caregivers — the nurses — felt Kai was suffering unnecessarily.\u003c/p>\n\u003cfigure id=\"attachment_136368\" class=\"wp-caption alignright\" style=\"max-width: 400px\">\u003cimg class=\"wp-image-136368 size-thumbnail\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/01/kai-13-400x267.jpg\" alt=\"Kai Shamiyeh’s memorial card is posted on the refrigerator. “Kai is part of our everyday life,” said Annie Shamiyeh.\" width=\"400\" height=\"267\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/01/kai-13-400x267.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/01/kai-13-768x513.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/01/kai-13.jpg 770w\" sizes=\"(max-width: 400px) 100vw, 400px\">\u003cfigcaption class=\"wp-caption-text\">Kai Shamiyeh’s memorial card is posted on the refrigerator. “Kai is part of our everyday life,” said Annie Shamiyeh. \u003ccite>(Heidi de Marco/KHN)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Deidre Miller, a registered nurse in the NICU, says she was one of just a handful of nurses willing to be part of his primary care team. It was clear to all of them, she says, that Kai wasn't going to make it. Miller says she felt comfortable caring for Kai, but faced pressure from other nurses.\u003c/p>\n\u003cp>\"A lot of people thought, 'OK, well, let's just offer the Shamiyehs the opportunity to withdraw care today.' And, as a primary nurse, you knew that the Shamiyehs were never going to agree to that, and you knew that he had joy in his life,\" she recalls. \"But you go into the break room, and everybody wants to talk about it, and everyone wants \u003cem>you\u003c/em> to be the person to tell the Shamiyehs.\"\u003c/p>\n\u003cp>There's often a lag between when health care providers and parents sense a child isn't going to make it. In \u003ca href=\"http://jama.jamanetwork.com/article.aspx?articleid=193278\" target=\"_blank\">one study\u003c/a>, for instance, oncologists realized that their young patients would not recover months before the parents recognized it.\u003c/p>\n\u003cp>\"As easy as it is to \u003cem>say\u003c/em> we knew Kai was going to die, and we knew he was going to have a difficult life — gosh, what if we had been wrong?\" Miller says.\u003c/p>\n\u003cp>From Anne's and Omar's perspective, Kai had many happy moments. They visited every day, always with Malia in tow. He smiled, cooed and connected with them. But he wasn't getting better.\u003c/p>\n\u003cp>In May 2013, five months into Kai's stay in the NICU, the Shamiyehs and their doctors sat down to talk about whether they wanted to go forward with the heart surgery that had been on the calendar since his birth. It would have to be done if Kai was ever to leave the hospital.\u003c/p>\n\u003cp>The surgery wouldn't help, doctors explained, and Kai might die during the procedure. This time, Anne and Omar decided not to go forward.\u003c/p>\n\u003cp>\"So that was the day we found out we wouldn't ever be bringing Kai home,\" Anne says.\u003c/p>\n\u003cp>Two weeks later, Kai developed an infection the doctors couldn't treat. On June 5, 2013, he died in his mother's arms.\u003c/p>\n\u003cp>There were real costs to Kai's long stay in the NICU. Based on billing statements, the Shamiyehs calculate that the charges for Kai's care added up to more than $11 million, though their insurer very likely negotiated a lower rate.\u003c/p>\n\u003cp>There were also consequences for Kai's twin sister, Malia, whose parents were mostly focused on her brother during her first six months of life. Born two months prematurely herself, she had physical and speech delays; although at age 3, she's already caught up.\u003c/p>\n\u003cfigure id=\"attachment_136339\" class=\"wp-caption aligncenter\" style=\"max-width: 1780px\">\u003cimg class=\"wp-image-136339 size-full\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2015/11/shamiyeh-9small-b979741189722172d683aa11277945b4996fec56.jpg\" alt=\"Anne Shamiyeh at home with 3-year-old Malia. Twins Kai and Malia arrived roughly two months early. Each weighed around 3 pounds at birth, but Malia was able to go home after about five weeks in the NICU.\" width=\"1780\" height=\"1335\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-9small-b979741189722172d683aa11277945b4996fec56.jpg 1780w, https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-9small-b979741189722172d683aa11277945b4996fec56-400x300.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-9small-b979741189722172d683aa11277945b4996fec56-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-9small-b979741189722172d683aa11277945b4996fec56-768x576.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-9small-b979741189722172d683aa11277945b4996fec56-1440x1080.jpg 1440w, https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-9small-b979741189722172d683aa11277945b4996fec56-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-9small-b979741189722172d683aa11277945b4996fec56-960x720.jpg 960w\" sizes=\"(max-width: 1780px) 100vw, 1780px\">\u003cfigcaption class=\"wp-caption-text\">Anne Shamiyeh at home with 3-year-old Malia. Twins Kai and Malia arrived roughly two months early. Each weighed around 3 pounds at birth, but Malia was able to go home after about five weeks in the NICU. \u003ccite>(Heidi de Marco/KHN)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Looking back, Omar says he wonders if they went too far. \"It's really hard to think — for five months he was going through all this pain and all this stress,\" Omar says. \"You wonder if you made the right decision in keeping it going, you know?\"\u003c/p>\n\u003cp>But Anne, who is now studying to become a nurse in the NICU, says she does not regret giving their son the best possible chance at life.\u003c/p>\n\u003cp>She's at peace with both their decisions — to try to save Kai, and to let him go.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>Jenny Gold is a reporter with \u003c/em>\u003ca href=\"http://khn.org/\" target=\"_blank\">Kaiser Health News\u003c/a>\u003cem> and completed this story while participating in the \u003c/em>\u003ca href=\"http://www.reportingonhealth.org/fellowships/seminars\" target=\"_blank\">California Health Journalism Fellowship\u003c/a>,\u003cem> a program of USC's Annenberg School of Journalism.\u003c/em>\u003c/p>\n\n","blocks":[],"excerpt":"As families consider how far to push an infant's medical care, a chasm can open between the parents' hopes and what doctors and nurses consider realistic. How do you measure a baby's quality of life?","status":"publish","parent":0,"modified":1452303265,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":35,"wordCount":1357},"headData":{"title":"A Sick Newborn, A Loving Family and A Litany of Wrenching Choices | KQED","description":"As families consider how far to push an infant's medical care, a chasm can open between the parents' hopes and what doctors and nurses consider realistic. How do you measure a baby's quality of life?","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"136331 http://ww2.kqed.org/stateofhealth/?p=136331","disqusUrl":"https://ww2.kqed.org/stateofhealth/2016/01/08/a-sick-newborn-a-loving-family-and-a-litany-of-wrenching-choices/","disqusTitle":"A Sick Newborn, A Loving Family and A Litany of Wrenching Choices","source":"Kaiser Health News","nprByline":"Jenny Gold","path":"/stateofhealth/136331/a-sick-newborn-a-loving-family-and-a-litany-of-wrenching-choices","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Anne and Omar Shamiyeh first learned something was wrong with one of their twins during an ultrasound, when Anne was 18 weeks pregnant.\u003c/p>\n\u003cp>\"The technician was, like, 'Well, there's no visualization of his stomach,'\" says Anne. \"And I was like, 'How does our baby have no stomach?' \"\u003c/p>\n\u003cp>It turned out that the baby's esophagus was not connected to his stomach. He also had a heart defect. At the very least, he was likely to face surgeries and a long stay in intensive care. He might have lifelong disabilities.\u003c/p>\n\u003cp>This was only the start of an eight-month ordeal for the Shamiyeh family.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003cdiv class='utils-parseShortcode-shortcodes-__shortcodes__shortcodeWrapper'>\n \u003ciframe width='100%' height='166'\n scrolling='no' frameborder='no'\n src='https://w.soundcloud.com/player/?url=https://api.soundcloud.com/tracks/241060950&visual=true&color=ff5500&auto_play=false&hide_related=false&show_comments=true&show_user=true&show_reposts=false'\n title='https://api.soundcloud.com/tracks/241060950'>\n \u003c/iframe>\n \u003c/div>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Decisions about how much care to offer very sick family members are always challenging. But they can be particularly wrenching for parents like the Shamiyehs, who face harrowing choices during what is supposed to be a wonderful time — the start of a life.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>As doctors and families consider how far to push medical care, a chasm can open between the parents' hopes and what providers consider realistic.\u003c/p>\n\u003cp>For the Shamiyehs, the first major decision was whether to \"selectively reduce,\" the clinical term for aborting one fetus in a multiple pregnancy. \"Omar and I were very uncomfortable with that,\" Anne says. \"We really wanted to see what he was going to be like, and what life had to offer.\"\u003c/p>\n\u003cp>That decision meant the twins, a boy and a girl, would likely be born prematurely. As it turned out, they were delivered by cesarean section at 30 weeks — about two months early — at UCSF Benioff Children's Hospital, in San Francisco.\u003c/p>\n\u003cp>The boy was named Kai, the girl Malia. Each weighed about 3 pounds. They were rushed immediately to the neonatal intensive care unit. That night Kai had his first surgery.\u003c/p>\n\u003cp>Malia went home after about five weeks. But Kai was far from ready. He was on a ventilator, had to be fed through a tube directly into his stomach and was still struggling to survive. Eventually, he was diagnosed with \u003ca href=\"http://www.chargesyndrome.org/about-charge.asp\" target=\"_blank\">CHARGE syndrome\u003c/a> — a rare genetic condition that can result in severe cognitive and physical disabilities.\u003c/p>\n\u003cfigure id=\"attachment_136337\" class=\"wp-caption aligncenter\" style=\"max-width: 1780px\">\u003cimg class=\"wp-image-136337 size-full\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2015/11/shamiyeh-12small-2f176b34a82e823212962a085679b964c0079eb8.jpg\" alt=\"Omar looks through Kai's photo book. The charges for the infant's six months of care in the neonatal intensive care unit totaled about $11 million, according to the family, though their insurer very likely negotiated a lower rate.\" width=\"1780\" height=\"1335\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-12small-2f176b34a82e823212962a085679b964c0079eb8.jpg 1780w, https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-12small-2f176b34a82e823212962a085679b964c0079eb8-400x300.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-12small-2f176b34a82e823212962a085679b964c0079eb8-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-12small-2f176b34a82e823212962a085679b964c0079eb8-768x576.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-12small-2f176b34a82e823212962a085679b964c0079eb8-1440x1080.jpg 1440w, https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-12small-2f176b34a82e823212962a085679b964c0079eb8-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-12small-2f176b34a82e823212962a085679b964c0079eb8-960x720.jpg 960w\" sizes=\"(max-width: 1780px) 100vw, 1780px\">\u003cfigcaption class=\"wp-caption-text\">Omar looks through Kai's photo book. The charges for the infant's six months of care in the neonatal intensive care unit totaled about $11 million, according to the family, though their insurer very likely negotiated a lower rate. \u003ccite>(Heidi de Marco/KHN)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>About the time Malia went home, the doctors and nurses sat down with the Shamiyehs to discuss Kai's treatment. They needed to know whether the family wanted a tracheostomy — surgeons would insert a breathing tube directly into Kai's neck to ease passage of air into his lungs.\u003c/p>\n\u003cp>\"It seemed awful,\" Anne recalls. \"We were both really unhappy with that, but we understood it wasn't a choice. It was something we had to do.\"\u003c/p>\n\u003cp>But \u003ca href=\"https://www.ucsfbenioffchildrens.org/elizabeth.rogers\" target=\"_blank\">Dr. Liz Rogers\u003c/a>, a UCSF neonatologist who cared for Kai, saw it as a significant decision.\u003c/p>\n\u003cp>\"To be very honest,\" Rogers says, \"for many, many of our families, the point of decision around a tracheostomy is a major, major time when families say, 'This has gone on for too long, and it's not what I want for him.' \"\u003c/p>\n\u003cp>Anne had real hope for Kai's future, despite the pessimism of some doctors.\u003c/p>\n\u003cp>\"I kept thinking, maybe that doctor's view of quality of life is different from mine. And maybe, for me, loving my child and having him feel love is enough,\" Anne says. \"And it's OK if he can't talk. Maybe he'll wear a diaper until he's 5, and maybe he'll be in a wheelchair, but that's OK. Because he'll be alive, and he'll be my child.\"\u003c/p>\n\u003cp>Studies \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed/10359387\">suggest\u003c/a> that health care providers do tend to have a \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed/24112219\">different view\u003c/a> of quality of life than parents do. In Kai's case, many of his day-to-day caregivers — the nurses — felt Kai was suffering unnecessarily.\u003c/p>\n\u003cfigure id=\"attachment_136368\" class=\"wp-caption alignright\" style=\"max-width: 400px\">\u003cimg class=\"wp-image-136368 size-thumbnail\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/01/kai-13-400x267.jpg\" alt=\"Kai Shamiyeh’s memorial card is posted on the refrigerator. “Kai is part of our everyday life,” said Annie Shamiyeh.\" width=\"400\" height=\"267\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/01/kai-13-400x267.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2016/01/kai-13-768x513.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/01/kai-13.jpg 770w\" sizes=\"(max-width: 400px) 100vw, 400px\">\u003cfigcaption class=\"wp-caption-text\">Kai Shamiyeh’s memorial card is posted on the refrigerator. “Kai is part of our everyday life,” said Annie Shamiyeh. \u003ccite>(Heidi de Marco/KHN)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Deidre Miller, a registered nurse in the NICU, says she was one of just a handful of nurses willing to be part of his primary care team. It was clear to all of them, she says, that Kai wasn't going to make it. Miller says she felt comfortable caring for Kai, but faced pressure from other nurses.\u003c/p>\n\u003cp>\"A lot of people thought, 'OK, well, let's just offer the Shamiyehs the opportunity to withdraw care today.' And, as a primary nurse, you knew that the Shamiyehs were never going to agree to that, and you knew that he had joy in his life,\" she recalls. \"But you go into the break room, and everybody wants to talk about it, and everyone wants \u003cem>you\u003c/em> to be the person to tell the Shamiyehs.\"\u003c/p>\n\u003cp>There's often a lag between when health care providers and parents sense a child isn't going to make it. In \u003ca href=\"http://jama.jamanetwork.com/article.aspx?articleid=193278\" target=\"_blank\">one study\u003c/a>, for instance, oncologists realized that their young patients would not recover months before the parents recognized it.\u003c/p>\n\u003cp>\"As easy as it is to \u003cem>say\u003c/em> we knew Kai was going to die, and we knew he was going to have a difficult life — gosh, what if we had been wrong?\" Miller says.\u003c/p>\n\u003cp>From Anne's and Omar's perspective, Kai had many happy moments. They visited every day, always with Malia in tow. He smiled, cooed and connected with them. But he wasn't getting better.\u003c/p>\n\u003cp>In May 2013, five months into Kai's stay in the NICU, the Shamiyehs and their doctors sat down to talk about whether they wanted to go forward with the heart surgery that had been on the calendar since his birth. It would have to be done if Kai was ever to leave the hospital.\u003c/p>\n\u003cp>The surgery wouldn't help, doctors explained, and Kai might die during the procedure. This time, Anne and Omar decided not to go forward.\u003c/p>\n\u003cp>\"So that was the day we found out we wouldn't ever be bringing Kai home,\" Anne says.\u003c/p>\n\u003cp>Two weeks later, Kai developed an infection the doctors couldn't treat. On June 5, 2013, he died in his mother's arms.\u003c/p>\n\u003cp>There were real costs to Kai's long stay in the NICU. Based on billing statements, the Shamiyehs calculate that the charges for Kai's care added up to more than $11 million, though their insurer very likely negotiated a lower rate.\u003c/p>\n\u003cp>There were also consequences for Kai's twin sister, Malia, whose parents were mostly focused on her brother during her first six months of life. Born two months prematurely herself, she had physical and speech delays; although at age 3, she's already caught up.\u003c/p>\n\u003cfigure id=\"attachment_136339\" class=\"wp-caption aligncenter\" style=\"max-width: 1780px\">\u003cimg class=\"wp-image-136339 size-full\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2015/11/shamiyeh-9small-b979741189722172d683aa11277945b4996fec56.jpg\" alt=\"Anne Shamiyeh at home with 3-year-old Malia. Twins Kai and Malia arrived roughly two months early. Each weighed around 3 pounds at birth, but Malia was able to go home after about five weeks in the NICU.\" width=\"1780\" height=\"1335\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-9small-b979741189722172d683aa11277945b4996fec56.jpg 1780w, https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-9small-b979741189722172d683aa11277945b4996fec56-400x300.jpg 400w, https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-9small-b979741189722172d683aa11277945b4996fec56-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-9small-b979741189722172d683aa11277945b4996fec56-768x576.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-9small-b979741189722172d683aa11277945b4996fec56-1440x1080.jpg 1440w, https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-9small-b979741189722172d683aa11277945b4996fec56-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/27/2015/11/shamiyeh-9small-b979741189722172d683aa11277945b4996fec56-960x720.jpg 960w\" sizes=\"(max-width: 1780px) 100vw, 1780px\">\u003cfigcaption class=\"wp-caption-text\">Anne Shamiyeh at home with 3-year-old Malia. Twins Kai and Malia arrived roughly two months early. Each weighed around 3 pounds at birth, but Malia was able to go home after about five weeks in the NICU. \u003ccite>(Heidi de Marco/KHN)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Looking back, Omar says he wonders if they went too far. \"It's really hard to think — for five months he was going through all this pain and all this stress,\" Omar says. \"You wonder if you made the right decision in keeping it going, you know?\"\u003c/p>\n\u003cp>But Anne, who is now studying to become a nurse in the NICU, says she does not regret giving their son the best possible chance at life.\u003c/p>\n\u003cp>She's at peace with both their decisions — to try to save Kai, and to let him go.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>Jenny Gold is a reporter with \u003c/em>\u003ca href=\"http://khn.org/\" target=\"_blank\">Kaiser Health News\u003c/a>\u003cem> and completed this story while participating in the \u003c/em>\u003ca href=\"http://www.reportingonhealth.org/fellowships/seminars\" target=\"_blank\">California Health Journalism Fellowship\u003c/a>,\u003cem> a program of USC's Annenberg School of Journalism.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/stateofhealth/136331/a-sick-newborn-a-loving-family-and-a-litany-of-wrenching-choices","authors":["byline_stateofhealth_136331"],"categories":["stateofhealth_13"],"tags":["stateofhealth_40","stateofhealth_2519"],"featImg":"stateofhealth_136338","label":"source_stateofhealth_136331"},"stateofhealth_112954":{"type":"posts","id":"stateofhealth_112954","meta":{"index":"posts_1591205157","site":"stateofhealth","id":"112954","score":null,"sort":[1448318220000]},"guestAuthors":[],"slug":"wishes-for-end-of-life-care-common-across-ethnicities","title":"Wishes for End-of-Life Care Are Common Across Ethnicities","publishDate":1448318220,"format":"standard","headTitle":"State of Health | KQED News","labelTerm":{},"content":"\u003cp>What kind of care do you want at the end of your life?\u003c/p>\n\u003cp>Stanford University researchers put that question to members of three major ethnic groups in the Bay Area and, \u003ca href=\"http://online.liebertpub.com/doi/full/10.1089/jpm.2015.0403\" target=\"_blank\">in an analysis,\u003c/a> found little variation in their responses.\u003c/p>\n\u003caside class=\"pullquote alignright\">'What this study tells us is that all of our patients want us to have these conversations.'\u003cbr>\n\u003ccite>Steven Pantilat, UCSF palliative care program\u003c/cite>\u003c/aside>\n\u003cp>“There is a common humanity –- people want to live as long as they have good quality of life. When it is their time, they want to be consulted so they die in a way that they are respected, and they don’t want their families burdened,” said the study’s lead author, Dr. V.J. Periyakoil, director of the Stanford Palliative Care Education and Training Program and associate director of palliative care services at the VA Palo Alto Health Care Center.\u003c/p>\n\u003cp>Regardless of ethnicity, however, the researchers found that access to high-quality end-of-life care is often hampered by lack of financial means, poor communication with health providers, cultural mores and family conflicts. The study, involving more than 300 white, Asian and African-American seniors, was published last week in the Journal of Palliative Medicine.\u003c/p>\n\u003cp>Periyakoil, whose earlier research focused on \u003ca href=\"http://ww2.kqed.org/stateofhealth/2015/04/22/ethnic-differences-thwart-end-of-life-conversations/\" target=\"_blank\">how doctors discuss end-of-life care\u003c/a> with patients from different cultures, said physicians often believe that talking about end-of-life care with patients of certain ethnic groups is taboo and that patients and their families are reluctant to have these sensitive conversations. The new study, though small and limited in geographic scope, suggests otherwise. The participants may have been more affluent and better educated than their counterparts nationwide, given the region’s demographics, Periyakoil noted.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The researchers interviewed 315 people over 50 at senior centers in Fremont, Palo Alto, San Francisco, San Jose and Walnut Creek. The group included 38 African-Americans, 160 Asian-Americans and 117 Caucasians.\u003c/p>\n\u003cp>Interviews were conducted in multiple languages: English, Burmese, Hindi, Mandarin, Tagalog and Vietnamese. Researchers examined participants’ attitudes toward end-of-life care and whether they had experienced barriers to getting quality end-of-life care for relatives or others in their community.\u003c/p>\n\u003cp>\u003cstrong>Finances an Issue for Many\u003c/strong>\u003c/p>\n\u003cp>Researchers are still collecting data on Latino participants and plan to publish a separate study on their views, Periyakoil said.\u003c/p>\n\u003cp>While all of the participants in the study said they valued high-quality end-of-life care, about 60 percent said they had experienced barriers to getting it, most notably financial difficulties and a lack of adequate health insurance. Medicare typically covers only short-term nursing home care and offers hospice benefits to patients whose doctors certify they have six months or less to live and who are willing to forgo treatment intended to cure their terminal illness.\u003c/p>\n\u003cp>There were no statistically significant differences among ethnic groups in reporting barriers to care. But participants with less education were more likely to report that their biggest barrier to care was financial.\u003c/p>\n\u003cp>Patients with more education were more likely to cite doctor behaviors that hampered end-of-life communication. And women were more likely than men to cite barriers to care overall, perhaps because they were more likely to be direct caregivers and have more experience with end-of-life needs.\u003c/p>\n\u003cp>\u003cstrong>'Vague Responses' from Doctors\u003c/strong>\u003c/p>\n\u003cp>Regardless of ethnicity, patients felt that “doctors were just too busy to initiate [end-of-life] conversations, reluctant to listen to their concerns and questions about EOL decision making, and often gave vague responses, making it difficult for the patient to comprehend their choices and make informed decisions,” the researchers wrote.\u003c/p>\n\u003cp>An estimated 2.6 million Americans die every year, but how the American health care system handles their last days is problematic across ethnic groups, according to \u003ca href=\"http://iom.nationalacademies.org/Reports/2014/Dying-In-America-Improving-Quality-and-Honoring-Individual-Preferences-Near-the-End-of-Life.aspx\" target=\"_blank\">“Dying in America,”\u003c/a> a landmark report released in 2014 by the Institute of Medicine. Too many people end up having aggressive treatment that is ineffective and expensive and doesn’t contribute to the patient’s quality of life, the report found. Other research examining\u003ca href=\"http://ww2.kqed.org/stateofhealth/2015/08/25/a-racial-gap-in-attitudes-toward-hospice-care/\" target=\"_blank\"> racial gaps in attitudes toward hospice care\u003c/a> and other studies has found differences among ethnic and religious groups in how they approach end-of-life decisions.\u003c/p>\n\u003cp>[contextly_sidebar id=\"fDtiIK5xkI4TXA1JF0Lq6Kt8zKIAFZ4t\"]But people want to talk about it regardless of background, says Dr. Steven Pantilat, director of UC San Francisco's palliative care program. He was not involved in the study.\u003c/p>\n\u003cp>“What this study tells us is that \u003cem>all\u003c/em> of our patients want us to have these conversations,” Pantilat said. “They’re waiting for their doctors to bring it up, to not be rushed, to communicate sensitively.”\u003c/p>\n\u003cp>A new federal policy may make those conversations easier –- and more routine. Starting in January, \u003ca href=\"http://bigstory.ap.org/article/3c1463f23baa4b79b2f2462ee9fc29ff/medicare-cover-end-life-counseling\" target=\"_blank\">Medicare will reimburse physicians for discussing end-of-life care\u003c/a>. That policy infamously -- and incorrectly -- was derided as promoting “death panels” during the debate over the Affordable Care Act, and a version of it was dropped from the legislation. The counseling will cover what kind of medical care patients want to receive as they approach their last days.\u003c/p>\n\u003cp>Periyakoil urges patients of all backgrounds to prepare for these conversations, and new planning tools are available in different languages to help. Among them is the \u003ca href=\"http://med.stanford.edu/letter.html\" target=\"_blank\">Stanford Letter Project\u003c/a>, which helps patients write a letter to their doctors about the end-of-life care they do and don’t want in languages including English, Spanish, Mandarin, Vietnamese, Hindi, Urdu, Tagalog and Russian.\u003c/p>\n\u003cp>In one redacted letter provided by Periyakoil, a woman named Patricia writes: “I do not want my longevity to be more important than my comfort.”\u003c/p>\n\u003cp>Pantilat advises the doctors he trains that they don’t need deep knowledge of the beliefs of every religion and culture they might encounter, because every patient, of whatever ethnicity, has different goals.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>“If we come in with true curiosity, respect and openness, we can learn a lot about how to take care of someone in a sensitive way,” he said. We need to ask: “What do I need to know about your culture and your family to take good care of \u003cem>you\u003c/em>?”\u003c/p>\n\n","blocks":[],"excerpt":"Stanford researchers queried three major ethnic groups in the Bay Area and found 'a common humanity' in responses. ","status":"publish","parent":0,"modified":1448400565,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":24,"wordCount":1051},"headData":{"title":"Wishes for End-of-Life Care Are Common Across Ethnicities | KQED","description":"Stanford researchers queried three major ethnic groups in the Bay Area and found 'a common humanity' in responses. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"112954 http://ww2.kqed.org/stateofhealth/?p=112954","disqusUrl":"https://ww2.kqed.org/stateofhealth/2015/11/23/wishes-for-end-of-life-care-common-across-ethnicities/","disqusTitle":"Wishes for End-of-Life Care Are Common Across Ethnicities","source":"Kaiser Health News","sourceUrl":"http://khn.org/news/deficiencies-in-end-of-life-care-extend-across-ethnicities/","nprByline":"Barbara Feder Ostrov","path":"/stateofhealth/112954/wishes-for-end-of-life-care-common-across-ethnicities","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>What kind of care do you want at the end of your life?\u003c/p>\n\u003cp>Stanford University researchers put that question to members of three major ethnic groups in the Bay Area and, \u003ca href=\"http://online.liebertpub.com/doi/full/10.1089/jpm.2015.0403\" target=\"_blank\">in an analysis,\u003c/a> found little variation in their responses.\u003c/p>\n\u003caside class=\"pullquote alignright\">'What this study tells us is that all of our patients want us to have these conversations.'\u003cbr>\n\u003ccite>Steven Pantilat, UCSF palliative care program\u003c/cite>\u003c/aside>\n\u003cp>“There is a common humanity –- people want to live as long as they have good quality of life. When it is their time, they want to be consulted so they die in a way that they are respected, and they don’t want their families burdened,” said the study’s lead author, Dr. V.J. Periyakoil, director of the Stanford Palliative Care Education and Training Program and associate director of palliative care services at the VA Palo Alto Health Care Center.\u003c/p>\n\u003cp>Regardless of ethnicity, however, the researchers found that access to high-quality end-of-life care is often hampered by lack of financial means, poor communication with health providers, cultural mores and family conflicts. The study, involving more than 300 white, Asian and African-American seniors, was published last week in the Journal of Palliative Medicine.\u003c/p>\n\u003cp>Periyakoil, whose earlier research focused on \u003ca href=\"http://ww2.kqed.org/stateofhealth/2015/04/22/ethnic-differences-thwart-end-of-life-conversations/\" target=\"_blank\">how doctors discuss end-of-life care\u003c/a> with patients from different cultures, said physicians often believe that talking about end-of-life care with patients of certain ethnic groups is taboo and that patients and their families are reluctant to have these sensitive conversations. The new study, though small and limited in geographic scope, suggests otherwise. The participants may have been more affluent and better educated than their counterparts nationwide, given the region’s demographics, Periyakoil noted.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The researchers interviewed 315 people over 50 at senior centers in Fremont, Palo Alto, San Francisco, San Jose and Walnut Creek. The group included 38 African-Americans, 160 Asian-Americans and 117 Caucasians.\u003c/p>\n\u003cp>Interviews were conducted in multiple languages: English, Burmese, Hindi, Mandarin, Tagalog and Vietnamese. Researchers examined participants’ attitudes toward end-of-life care and whether they had experienced barriers to getting quality end-of-life care for relatives or others in their community.\u003c/p>\n\u003cp>\u003cstrong>Finances an Issue for Many\u003c/strong>\u003c/p>\n\u003cp>Researchers are still collecting data on Latino participants and plan to publish a separate study on their views, Periyakoil said.\u003c/p>\n\u003cp>While all of the participants in the study said they valued high-quality end-of-life care, about 60 percent said they had experienced barriers to getting it, most notably financial difficulties and a lack of adequate health insurance. Medicare typically covers only short-term nursing home care and offers hospice benefits to patients whose doctors certify they have six months or less to live and who are willing to forgo treatment intended to cure their terminal illness.\u003c/p>\n\u003cp>There were no statistically significant differences among ethnic groups in reporting barriers to care. But participants with less education were more likely to report that their biggest barrier to care was financial.\u003c/p>\n\u003cp>Patients with more education were more likely to cite doctor behaviors that hampered end-of-life communication. And women were more likely than men to cite barriers to care overall, perhaps because they were more likely to be direct caregivers and have more experience with end-of-life needs.\u003c/p>\n\u003cp>\u003cstrong>'Vague Responses' from Doctors\u003c/strong>\u003c/p>\n\u003cp>Regardless of ethnicity, patients felt that “doctors were just too busy to initiate [end-of-life] conversations, reluctant to listen to their concerns and questions about EOL decision making, and often gave vague responses, making it difficult for the patient to comprehend their choices and make informed decisions,” the researchers wrote.\u003c/p>\n\u003cp>An estimated 2.6 million Americans die every year, but how the American health care system handles their last days is problematic across ethnic groups, according to \u003ca href=\"http://iom.nationalacademies.org/Reports/2014/Dying-In-America-Improving-Quality-and-Honoring-Individual-Preferences-Near-the-End-of-Life.aspx\" target=\"_blank\">“Dying in America,”\u003c/a> a landmark report released in 2014 by the Institute of Medicine. Too many people end up having aggressive treatment that is ineffective and expensive and doesn’t contribute to the patient’s quality of life, the report found. Other research examining\u003ca href=\"http://ww2.kqed.org/stateofhealth/2015/08/25/a-racial-gap-in-attitudes-toward-hospice-care/\" target=\"_blank\"> racial gaps in attitudes toward hospice care\u003c/a> and other studies has found differences among ethnic and religious groups in how they approach end-of-life decisions.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>But people want to talk about it regardless of background, says Dr. Steven Pantilat, director of UC San Francisco's palliative care program. He was not involved in the study.\u003c/p>\n\u003cp>“What this study tells us is that \u003cem>all\u003c/em> of our patients want us to have these conversations,” Pantilat said. “They’re waiting for their doctors to bring it up, to not be rushed, to communicate sensitively.”\u003c/p>\n\u003cp>A new federal policy may make those conversations easier –- and more routine. Starting in January, \u003ca href=\"http://bigstory.ap.org/article/3c1463f23baa4b79b2f2462ee9fc29ff/medicare-cover-end-life-counseling\" target=\"_blank\">Medicare will reimburse physicians for discussing end-of-life care\u003c/a>. That policy infamously -- and incorrectly -- was derided as promoting “death panels” during the debate over the Affordable Care Act, and a version of it was dropped from the legislation. The counseling will cover what kind of medical care patients want to receive as they approach their last days.\u003c/p>\n\u003cp>Periyakoil urges patients of all backgrounds to prepare for these conversations, and new planning tools are available in different languages to help. Among them is the \u003ca href=\"http://med.stanford.edu/letter.html\" target=\"_blank\">Stanford Letter Project\u003c/a>, which helps patients write a letter to their doctors about the end-of-life care they do and don’t want in languages including English, Spanish, Mandarin, Vietnamese, Hindi, Urdu, Tagalog and Russian.\u003c/p>\n\u003cp>In one redacted letter provided by Periyakoil, a woman named Patricia writes: “I do not want my longevity to be more important than my comfort.”\u003c/p>\n\u003cp>Pantilat advises the doctors he trains that they don’t need deep knowledge of the beliefs of every religion and culture they might encounter, because every patient, of whatever ethnicity, has different goals.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>“If we come in with true curiosity, respect and openness, we can learn a lot about how to take care of someone in a sensitive way,” he said. We need to ask: “What do I need to know about your culture and your family to take good care of \u003cem>you\u003c/em>?”\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/stateofhealth/112954/wishes-for-end-of-life-care-common-across-ethnicities","authors":["byline_stateofhealth_112954"],"categories":["stateofhealth_14","stateofhealth_13"],"tags":["stateofhealth_40","stateofhealth_2519"],"featImg":"stateofhealth_112981","label":"source_stateofhealth_112954"},"stateofhealth_76336":{"type":"posts","id":"stateofhealth_76336","meta":{"index":"posts_1591205157","site":"stateofhealth","id":"76336","score":null,"sort":[1442013495000]},"guestAuthors":[],"slug":"legislature-approves-physician-assisted-suicide-bill-headed-to-governors-desk","title":"Legislature Approves Physician-Assisted Suicide; Bill Headed to Governor's Desk","publishDate":1442013495,"format":"standard","headTitle":"State of Health | KQED News","labelTerm":{"site":"stateofhealth"},"content":"\u003cp>A controversial bill to legalize physician-assisted suicide in California is headed to the governor for consideration, after almost nine months of intense, often personal debate in the Legislature.\u003c/p>\n\u003cp>If Gov. Jerry Brown signs the bill, California would become the fifth state to allow doctors to prescribe lethal medication to terminally ill patients who request it, after Oregon, Washington, Vermont and Montana.\u003c/p>\n\u003cp>“Our hope, our fervent hope, is that Gov. Jerry Brown will sign this bill and bring relief to hundreds of dying Californians,” said Toni Broaddus, California campaign director for advocacy group Compassion & Choices.\u003c/p>\n\u003cp>The California bill was modeled after the Oregon law. It requires two different doctors to determine that a patient has six months or less to live before prescribing the drugs. Patients must be physically able to swallow the medication themselves, and must have the mental capacity to make medical decisions.\u003c/p>\n\u003cp>[contextly_sidebar id=\"WwaMXY3KhsB3D0AneaZItuHsUvPEDxTV\"]Numerous additional safeguards were added to the bill in recent months to sway opponents, including \u003ca href=\"http://ww2.kqed.org/stateofhealth/2015/09/09/physician-assisted-suicide-bill-one-step-from-governors-desk/\" target=\"_blank\">a sunset clause\u003c/a> that ends the law in 10 years. Patients must request the drugs three times to receive them, once in writing before two witnesses, and they must sign a form two days before ingesting the medication.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>“I can assure you that the joint and co-authors on this bill ... have endeavored to build in protections in this law that are stronger than the protections in any of the states where this has been practiced,” said Sen. Bill Monning, D-Carmel.\u003c/p>\n\u003cp>The bill continued to face fierce opposition, however, from religious groups and disability rights advocates. They are concerned that elderly and disabled people, especially those who are low income, could be pressured into taking the drugs in order to end or avoid expensive, life-sustaining care. They fear the protections are not enough, and that family members or other heirs could slip the drugs to the patient without their knowledge or consent.\u003c/p>\n\u003cp>“The legislation effectively paints a target on the back of each and every elderly and disabled person in our state,” said Sen. Joel Anderson, R-San Diego, paraphrasing an elder abuse advocate. “The promises and assurances of the safeguards and protections from the representatives of those in favor are based in innocent ignorance.”\u003c/p>\n\u003cp>Opponents also criticized the procedure for getting the bill through the Legislature. During the normal legislative session, \u003ca href=\"http://ww2.kqed.org/stateofhealth/2015/07/07/californias-physician-assisted-suicide-bill-shelved-for-the-year/\" target=\"_blank\">the bill stalled \u003c/a>in the Assembly Health Committee when authors couldn’t get enough votes. Several Democrats from Southern California would not support it.\u003c/p>\n\u003cp>But proponents managed to navigate through that roadblock by re-introducing the bill during a special session on health care financing, where committee memberships were different. The bill passed the Assembly on Wednesday 44-35, and it passed the Senate on Friday 23-14.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003ca href=\"http://ww2.kqed.org/stateofhealth/2015/08/19/gov-brown-says-not-so-fast-on-new-physician-assisted-suicide-push/\" target=\"_blank\">Gov. Jerry Brown’s office also criticized \u003c/a>the political pathway, saying the special session was not the appropriate venue for the physician-assisted suicide bill. But Brown has not indicated where he stands on the issue itself, nor whether he will sign or veto the bill. If he does nothing, after 30 days the bill will become law.\u003c/p>\n\n","blocks":[],"excerpt":"There is no indication if the governor will sign or veto. California would be the fifth state to approve aid in dying. ","status":"publish","parent":0,"modified":1442018970,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":13,"wordCount":526},"headData":{"title":"Legislature Approves Physician-Assisted Suicide; Bill Headed to Governor's Desk | KQED","description":"There is no indication if the governor will sign or veto. California would be the fifth state to approve aid in dying. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"76336 http://ww2.kqed.org/stateofhealth/?p=76336","disqusUrl":"https://ww2.kqed.org/stateofhealth/2015/09/11/legislature-approves-physician-assisted-suicide-bill-headed-to-governors-desk/","disqusTitle":"Legislature Approves Physician-Assisted Suicide; Bill Headed to Governor's Desk","path":"/stateofhealth/76336/legislature-approves-physician-assisted-suicide-bill-headed-to-governors-desk","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>A controversial bill to legalize physician-assisted suicide in California is headed to the governor for consideration, after almost nine months of intense, often personal debate in the Legislature.\u003c/p>\n\u003cp>If Gov. Jerry Brown signs the bill, California would become the fifth state to allow doctors to prescribe lethal medication to terminally ill patients who request it, after Oregon, Washington, Vermont and Montana.\u003c/p>\n\u003cp>“Our hope, our fervent hope, is that Gov. Jerry Brown will sign this bill and bring relief to hundreds of dying Californians,” said Toni Broaddus, California campaign director for advocacy group Compassion & Choices.\u003c/p>\n\u003cp>The California bill was modeled after the Oregon law. It requires two different doctors to determine that a patient has six months or less to live before prescribing the drugs. Patients must be physically able to swallow the medication themselves, and must have the mental capacity to make medical decisions.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>Numerous additional safeguards were added to the bill in recent months to sway opponents, including \u003ca href=\"http://ww2.kqed.org/stateofhealth/2015/09/09/physician-assisted-suicide-bill-one-step-from-governors-desk/\" target=\"_blank\">a sunset clause\u003c/a> that ends the law in 10 years. Patients must request the drugs three times to receive them, once in writing before two witnesses, and they must sign a form two days before ingesting the medication.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“I can assure you that the joint and co-authors on this bill ... have endeavored to build in protections in this law that are stronger than the protections in any of the states where this has been practiced,” said Sen. Bill Monning, D-Carmel.\u003c/p>\n\u003cp>The bill continued to face fierce opposition, however, from religious groups and disability rights advocates. They are concerned that elderly and disabled people, especially those who are low income, could be pressured into taking the drugs in order to end or avoid expensive, life-sustaining care. They fear the protections are not enough, and that family members or other heirs could slip the drugs to the patient without their knowledge or consent.\u003c/p>\n\u003cp>“The legislation effectively paints a target on the back of each and every elderly and disabled person in our state,” said Sen. Joel Anderson, R-San Diego, paraphrasing an elder abuse advocate. “The promises and assurances of the safeguards and protections from the representatives of those in favor are based in innocent ignorance.”\u003c/p>\n\u003cp>Opponents also criticized the procedure for getting the bill through the Legislature. During the normal legislative session, \u003ca href=\"http://ww2.kqed.org/stateofhealth/2015/07/07/californias-physician-assisted-suicide-bill-shelved-for-the-year/\" target=\"_blank\">the bill stalled \u003c/a>in the Assembly Health Committee when authors couldn’t get enough votes. Several Democrats from Southern California would not support it.\u003c/p>\n\u003cp>But proponents managed to navigate through that roadblock by re-introducing the bill during a special session on health care financing, where committee memberships were different. The bill passed the Assembly on Wednesday 44-35, and it passed the Senate on Friday 23-14.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003ca href=\"http://ww2.kqed.org/stateofhealth/2015/08/19/gov-brown-says-not-so-fast-on-new-physician-assisted-suicide-push/\" target=\"_blank\">Gov. Jerry Brown’s office also criticized \u003c/a>the political pathway, saying the special session was not the appropriate venue for the physician-assisted suicide bill. But Brown has not indicated where he stands on the issue itself, nor whether he will sign or veto the bill. If he does nothing, after 30 days the bill will become law.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/stateofhealth/76336/legislature-approves-physician-assisted-suicide-bill-headed-to-governors-desk","authors":["3205"],"categories":["stateofhealth_14"],"tags":["stateofhealth_914","stateofhealth_40","stateofhealth_754"],"featImg":"stateofhealth_76358","label":"stateofhealth"},"stateofhealth_67388":{"type":"posts","id":"stateofhealth_67388","meta":{"index":"posts_1591205157","site":"stateofhealth","id":"67388","score":null,"sort":[1440523116000]},"guestAuthors":[],"slug":"a-racial-gap-in-attitudes-toward-hospice-care","title":"A Racial Gap in Attitudes Toward Hospice Care","publishDate":1440523116,"format":"standard","headTitle":"State of Health | KQED News","labelTerm":{"site":"stateofhealth"},"content":"\u003cp>Twice already Narseary and Vernal Harris have watched a son die. The first time — Paul at age 26 — was agonizing and frenzied, his body tethered to a machine meant to keep him alive as his incurable sickle cell disease progressed. When the same illness ravaged Solomon, at age 33, the Harrises reluctantly turned to hospice in the hope that his last days might somehow be less harrowing than his brother’s.\u003c/p>\n\u003caside class=\"pullquote alignright\">At the root of the issue is a toxic distrust of a health care system that once displayed 'No Negroes' signs at hospitals.\u003c/aside>\n\u003cp>Their expectations were low. “They take your money,” Vernal Harris said, describing what she had heard of hospice. “Your loved ones don’t see you anymore. You just go there and die.\"\u003c/p>\n\u003cp>Hospice use has been growing fast in the United States as more people choose to avoid futile, often painful medical treatments in favor of palliative care and dying at home surrounded by loved ones. But the Harrises, who are African-American, belong to a demographic group that has long resisted the concept and whose suspicions remain deep-seated.\u003c/p>\n\u003cp>It is an attitude borne out by recent federal statistics showing that nearly half of white Medicare beneficiaries enrolled in hospice before death, compared with only a third of black patients. The racial divide is even more pronounced when it comes to advance care directives — legal documents meant to help families make life-or-death decisions that reflect a patient’s choices. Some 40 percent of whites 70 and over have such plans, compared with only 16 percent of blacks.\u003c/p>\n\u003cp>Instead, black Americans — far more so than whites — choose aggressive life-sustaining interventions, including resuscitation and mechanical ventilation, even when there is little chance of survival.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The racial gaps could widen when Medicare is expected to begin paying physicians in January 2016 for end-of-life counseling, and at a time when blacks and other minorities are projected to make up 42 percent of people 65 and over in 2050, up from 20 percent in 2000.\u003c/p>\n\u003cp>At the root of the resistance, say researchers and black physicians, is a toxic distrust of a health care system that once displayed “No Negroes” signs at hospitals, performed involuntary sterilizations on black women and, in an infamous Tuskegee study, purposely left hundreds of black men untreated for syphilis.\u003c/p>\n\u003cp>“You have people who’ve had a difficult time getting access to care throughout their lifetimes” because of poverty, lack of health insurance or difficulty finding a medical provider, said Dr. Maisha Robinson, a neurologist and palliative medicine physician at the Mayo Clinic in Jacksonville, Fla. “And then you have a physician who’s saying, ‘I think that we need to transition your mother, father, grandmother to comfort care or palliative care.’ People are skeptical of that.”\u003c/p>\n\u003cp>Federal policies surrounding hospice also arouse suspicion in black communities since Medicare currently requires patients to give up life-sustaining therapies in order to receive hospice benefits.\u003c/p>\n\u003cp>That trade-off strikes some black families, who believe they have long had to fight for quality medical care, as unfair, said Dr. Kimberly Johnson, a Duke University associate professor of medicine who has studied African-American attitudes about hospice.\u003c/p>\n\u003cp>Johnson said her black patients were more likely to believe there are actual religious prohibitions against limiting life-sustaining therapy, and that suffering can be redemptive, or “a test from God.” And those beliefs, she added, were “contrary to the hospice philosophy of care.”\u003c/p>\n\u003cp>But now some doctors and clergy members are trying to use church settings to reshape the black community’s views, incorporating the topic in sermons, Bible study groups, and grief and bereavement ministries.\u003c/p>\n\u003cp>Robinson, who is black and a daughter of Tennessee pastors, has been helping pastors develop faith-based hospice guidelines. She tells them, “God can work miracles, yes he can, but even in hospice.”\u003c/p>\n\u003cfigure id=\"attachment_67415\" class=\"wp-caption alignright\" style=\"max-width: 400px\">\u003ca href=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2015/08/church-5-e1440523046652.jpg\">\u003cimg class=\"size-thumbnail wp-image-67415\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2015/08/church-5-400x267.jpg\" alt=\"Bishop Gwendolyn Stone at the God Answers Prayer Ministries of Los Angeles.\" width=\"400\" height=\"267\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Bishop Gwendolyn Stone at the God Answers Prayer Ministries of Los Angeles. \u003ccite>(Heidi de Marco/Kaiser Health News)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>That message recently rang out from the pulpit at God Answers Prayer Ministries, an African-American church in South Los Angeles, as Bishop Gwendolyn Coates-Stone tried a sermon theme on advance care.\u003c/p>\n\u003cp>“It’s such a great cost to hold on to some of those sicknesses and diseases that eventually are going to take us out,” she exclaimed into a microphone, bobbing and weaving in a swirl of royal purple robes. “Just like Jesus talked about his death and prepared his disciples for his death, we ought to be preparing our disciples for our death!”\u003c/p>\n\u003cp>In a moment of benediction, Coates-Stone made a direct plea: “Help us Lord to have the courage to have conversations with our families,” she said, “that will also not leave them wandering and wondering, ‘What should I do in case of the death of a loved one?’ ”\u003c/p>\n\u003cp>A gathering of older blacks convened recently by Robinson in Leimert Park, a middle-class Los Angeles neighborhood, underscored the challenges such efforts still face.\u003c/p>\n\u003cp>“Hospice has not been a good place for African-Americans, unless you’re in a white facility and usually you’re one of few black people there,” said one woman, who along with others attending the gathering asked not to be identified in order to speak frankly.\u003c/p>\n\u003cp>That sentiment was greeted by nods from others in the group. “It gets into money,” another woman said. “The treatment is a little bit better, but then there is still the discrimination.”\u003c/p>\n\u003cp>[contextly_sidebar id=\"09BBcuw7D7WYql3Pf1G1Ezco877NRuqw\"]Advance directives, in particular, are often seen as sinister, a way for insurance companies to maximize profits. “If you say you want at all costs to live, and they say, ‘Well, your insurance company doesn’t allow that,’ then they’re going to pull the plug anyway,” said the host of the gathering, Loretta Jones, 73, founder of \u003ca href=\"http://www.haafii.org/\" target=\"_blank\">Healthy African-American Families\u003c/a> in Los Angeles.\u003c/p>\n\u003cp>To help allay those concerns, physicians need to be more explicit during end-of-life discussions, Robinson said. “We have to be much clearer about why we’re trying to have those conversations, or we’ll continue to see a pattern of people who really want life-sustaining interventions even when there’s limited potential benefit.”\u003c/p>\n\u003cp>Camille Wicher, vice president of clinical operations at Roswell Park Cancer Institute in Buffalo, who has studied African-Americans’ end-of-life choices, said hospitals needed to enlist black families who have had good hospice experiences to share their stories with friends and church members.\u003c/p>\n\u003cp>“That’s how we learn,” she added. “We learn from each other.”\u003c/p>\n\u003cp>The Harrises are trying to use their experience to carry out that work.\u003c/p>\n\u003cp>The agony of their son Paul’s death in a hospital room informed their treatment decisions when their next son, Solomon, became gravely ill. When his doctor conceded that blood transfusions were of little help, Solomon assented to hospice care in his parents’ home. If he was going to be robbed of his future, Solomon would not, his parents decided, be robbed of a good death.\u003c/p>\n\u003cp>As his health failed, nurses from the hospice in Buffalo managed his pain and bathed him tenderly. A social worker helped the family grieve and counseled his young children.\u003c/p>\n\u003cp>All the while, parishioners from his parents’ church visited Solomon, amazed to find that hospice was not the grim banishment they had always envisioned.\u003c/p>\n\u003cp>“One of the members said, ‘I thought you were going to put Solomon in hospice,’ ” Vernal Harris recalled. “I said, ‘We did.’ ‘Well, when is he going?’ I said, ‘They come here.’ ‘They come to your house?’ ‘Yeah, they’re taking care of him right here.’ ”\u003c/p>\n\u003cp>There was even time for reflection, as Solomon wrote in a poem called “After Life.”\u003c/p>\n\u003cp>“Fear death?” he wrote. “No, I await death.”\u003c/p>\n\u003cp>Solomon died a short while later, but the Harrises say his death has had a lasting impact.\u003c/p>\n\u003cp>“The people in our immediate circle now view hospice positively,” Vernal Harris said. “I think our experience was powerful enough that it changed people’s attitudes.”\u003c/p>\n\u003cp>Narseary Harris, the pastor of Prince of Peace Temple Church of God in Christ, often evangelizes about hospice during his Sunday morning sermons, while his spouse has enlisted the wives of black pastors in western New York, known as the “First Ladies,” to counter negative views about palliative care. At a recent meeting, the women discussed older church members who might benefit from hospice, and Vernal Harris wanted to hear how parishioners in the women’s churches responded to some recent outreach.\u003c/p>\n\u003cp>“It really opened up people’s eyes to the negative stigma of it, feeling like, ‘I’m just putting my loved one away, and not caring for them,’ ” said Joyce Badger of Bethesda World Harvest International Church in Buffalo. “The power of knowledge that we’ve gained is really going to help our community.”\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>Sarah Varney is a reporter with \u003c/em>\u003ca href=\"http://khn.org\" target=\"_blank\">\u003cem>Kaiser Health News\u003c/em>\u003c/a>\u003cem>, a nonprofit news organization covering health care policy and politics. It is an editorially independent program of the \u003c/em>\u003ca href=\"http://www.kff.org/\" target=\"_blank\">\u003cstrong>\u003cem>Kaiser Family Foundation\u003c/em>\u003c/strong>\u003c/a>\u003cem>.\u003c/em>\u003c/p>\n\n","blocks":[],"excerpt":"Many African-Americans are skeptical about end-of-life care options. Some doctors and clergy leaders are trying to reach out at church.","status":"publish","parent":0,"modified":1441324790,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":37,"wordCount":1617},"headData":{"title":"A Racial Gap in Attitudes Toward Hospice Care | KQED","description":"Many African-Americans are skeptical about end-of-life care options. Some doctors and clergy leaders are trying to reach out at church.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"67388 http://ww2.kqed.org/stateofhealth/?p=67388","disqusUrl":"https://ww2.kqed.org/stateofhealth/2015/08/25/a-racial-gap-in-attitudes-toward-hospice-care/","disqusTitle":"A Racial Gap in Attitudes Toward Hospice Care","nprByline":"Sarah Varney, Kaiser Health News","path":"/stateofhealth/67388/a-racial-gap-in-attitudes-toward-hospice-care","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Twice already Narseary and Vernal Harris have watched a son die. The first time — Paul at age 26 — was agonizing and frenzied, his body tethered to a machine meant to keep him alive as his incurable sickle cell disease progressed. When the same illness ravaged Solomon, at age 33, the Harrises reluctantly turned to hospice in the hope that his last days might somehow be less harrowing than his brother’s.\u003c/p>\n\u003caside class=\"pullquote alignright\">At the root of the issue is a toxic distrust of a health care system that once displayed 'No Negroes' signs at hospitals.\u003c/aside>\n\u003cp>Their expectations were low. “They take your money,” Vernal Harris said, describing what she had heard of hospice. “Your loved ones don’t see you anymore. You just go there and die.\"\u003c/p>\n\u003cp>Hospice use has been growing fast in the United States as more people choose to avoid futile, often painful medical treatments in favor of palliative care and dying at home surrounded by loved ones. But the Harrises, who are African-American, belong to a demographic group that has long resisted the concept and whose suspicions remain deep-seated.\u003c/p>\n\u003cp>It is an attitude borne out by recent federal statistics showing that nearly half of white Medicare beneficiaries enrolled in hospice before death, compared with only a third of black patients. The racial divide is even more pronounced when it comes to advance care directives — legal documents meant to help families make life-or-death decisions that reflect a patient’s choices. Some 40 percent of whites 70 and over have such plans, compared with only 16 percent of blacks.\u003c/p>\n\u003cp>Instead, black Americans — far more so than whites — choose aggressive life-sustaining interventions, including resuscitation and mechanical ventilation, even when there is little chance of survival.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The racial gaps could widen when Medicare is expected to begin paying physicians in January 2016 for end-of-life counseling, and at a time when blacks and other minorities are projected to make up 42 percent of people 65 and over in 2050, up from 20 percent in 2000.\u003c/p>\n\u003cp>At the root of the resistance, say researchers and black physicians, is a toxic distrust of a health care system that once displayed “No Negroes” signs at hospitals, performed involuntary sterilizations on black women and, in an infamous Tuskegee study, purposely left hundreds of black men untreated for syphilis.\u003c/p>\n\u003cp>“You have people who’ve had a difficult time getting access to care throughout their lifetimes” because of poverty, lack of health insurance or difficulty finding a medical provider, said Dr. Maisha Robinson, a neurologist and palliative medicine physician at the Mayo Clinic in Jacksonville, Fla. “And then you have a physician who’s saying, ‘I think that we need to transition your mother, father, grandmother to comfort care or palliative care.’ People are skeptical of that.”\u003c/p>\n\u003cp>Federal policies surrounding hospice also arouse suspicion in black communities since Medicare currently requires patients to give up life-sustaining therapies in order to receive hospice benefits.\u003c/p>\n\u003cp>That trade-off strikes some black families, who believe they have long had to fight for quality medical care, as unfair, said Dr. Kimberly Johnson, a Duke University associate professor of medicine who has studied African-American attitudes about hospice.\u003c/p>\n\u003cp>Johnson said her black patients were more likely to believe there are actual religious prohibitions against limiting life-sustaining therapy, and that suffering can be redemptive, or “a test from God.” And those beliefs, she added, were “contrary to the hospice philosophy of care.”\u003c/p>\n\u003cp>But now some doctors and clergy members are trying to use church settings to reshape the black community’s views, incorporating the topic in sermons, Bible study groups, and grief and bereavement ministries.\u003c/p>\n\u003cp>Robinson, who is black and a daughter of Tennessee pastors, has been helping pastors develop faith-based hospice guidelines. She tells them, “God can work miracles, yes he can, but even in hospice.”\u003c/p>\n\u003cfigure id=\"attachment_67415\" class=\"wp-caption alignright\" style=\"max-width: 400px\">\u003ca href=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2015/08/church-5-e1440523046652.jpg\">\u003cimg class=\"size-thumbnail wp-image-67415\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2015/08/church-5-400x267.jpg\" alt=\"Bishop Gwendolyn Stone at the God Answers Prayer Ministries of Los Angeles.\" width=\"400\" height=\"267\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Bishop Gwendolyn Stone at the God Answers Prayer Ministries of Los Angeles. \u003ccite>(Heidi de Marco/Kaiser Health News)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>That message recently rang out from the pulpit at God Answers Prayer Ministries, an African-American church in South Los Angeles, as Bishop Gwendolyn Coates-Stone tried a sermon theme on advance care.\u003c/p>\n\u003cp>“It’s such a great cost to hold on to some of those sicknesses and diseases that eventually are going to take us out,” she exclaimed into a microphone, bobbing and weaving in a swirl of royal purple robes. “Just like Jesus talked about his death and prepared his disciples for his death, we ought to be preparing our disciples for our death!”\u003c/p>\n\u003cp>In a moment of benediction, Coates-Stone made a direct plea: “Help us Lord to have the courage to have conversations with our families,” she said, “that will also not leave them wandering and wondering, ‘What should I do in case of the death of a loved one?’ ”\u003c/p>\n\u003cp>A gathering of older blacks convened recently by Robinson in Leimert Park, a middle-class Los Angeles neighborhood, underscored the challenges such efforts still face.\u003c/p>\n\u003cp>“Hospice has not been a good place for African-Americans, unless you’re in a white facility and usually you’re one of few black people there,” said one woman, who along with others attending the gathering asked not to be identified in order to speak frankly.\u003c/p>\n\u003cp>That sentiment was greeted by nods from others in the group. “It gets into money,” another woman said. “The treatment is a little bit better, but then there is still the discrimination.”\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>Advance directives, in particular, are often seen as sinister, a way for insurance companies to maximize profits. “If you say you want at all costs to live, and they say, ‘Well, your insurance company doesn’t allow that,’ then they’re going to pull the plug anyway,” said the host of the gathering, Loretta Jones, 73, founder of \u003ca href=\"http://www.haafii.org/\" target=\"_blank\">Healthy African-American Families\u003c/a> in Los Angeles.\u003c/p>\n\u003cp>To help allay those concerns, physicians need to be more explicit during end-of-life discussions, Robinson said. “We have to be much clearer about why we’re trying to have those conversations, or we’ll continue to see a pattern of people who really want life-sustaining interventions even when there’s limited potential benefit.”\u003c/p>\n\u003cp>Camille Wicher, vice president of clinical operations at Roswell Park Cancer Institute in Buffalo, who has studied African-Americans’ end-of-life choices, said hospitals needed to enlist black families who have had good hospice experiences to share their stories with friends and church members.\u003c/p>\n\u003cp>“That’s how we learn,” she added. “We learn from each other.”\u003c/p>\n\u003cp>The Harrises are trying to use their experience to carry out that work.\u003c/p>\n\u003cp>The agony of their son Paul’s death in a hospital room informed their treatment decisions when their next son, Solomon, became gravely ill. When his doctor conceded that blood transfusions were of little help, Solomon assented to hospice care in his parents’ home. If he was going to be robbed of his future, Solomon would not, his parents decided, be robbed of a good death.\u003c/p>\n\u003cp>As his health failed, nurses from the hospice in Buffalo managed his pain and bathed him tenderly. A social worker helped the family grieve and counseled his young children.\u003c/p>\n\u003cp>All the while, parishioners from his parents’ church visited Solomon, amazed to find that hospice was not the grim banishment they had always envisioned.\u003c/p>\n\u003cp>“One of the members said, ‘I thought you were going to put Solomon in hospice,’ ” Vernal Harris recalled. “I said, ‘We did.’ ‘Well, when is he going?’ I said, ‘They come here.’ ‘They come to your house?’ ‘Yeah, they’re taking care of him right here.’ ”\u003c/p>\n\u003cp>There was even time for reflection, as Solomon wrote in a poem called “After Life.”\u003c/p>\n\u003cp>“Fear death?” he wrote. “No, I await death.”\u003c/p>\n\u003cp>Solomon died a short while later, but the Harrises say his death has had a lasting impact.\u003c/p>\n\u003cp>“The people in our immediate circle now view hospice positively,” Vernal Harris said. “I think our experience was powerful enough that it changed people’s attitudes.”\u003c/p>\n\u003cp>Narseary Harris, the pastor of Prince of Peace Temple Church of God in Christ, often evangelizes about hospice during his Sunday morning sermons, while his spouse has enlisted the wives of black pastors in western New York, known as the “First Ladies,” to counter negative views about palliative care. At a recent meeting, the women discussed older church members who might benefit from hospice, and Vernal Harris wanted to hear how parishioners in the women’s churches responded to some recent outreach.\u003c/p>\n\u003cp>“It really opened up people’s eyes to the negative stigma of it, feeling like, ‘I’m just putting my loved one away, and not caring for them,’ ” said Joyce Badger of Bethesda World Harvest International Church in Buffalo. “The power of knowledge that we’ve gained is really going to help our community.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>Sarah Varney is a reporter with \u003c/em>\u003ca href=\"http://khn.org\" target=\"_blank\">\u003cem>Kaiser Health News\u003c/em>\u003c/a>\u003cem>, a nonprofit news organization covering health care policy and politics. It is an editorially independent program of the \u003c/em>\u003ca href=\"http://www.kff.org/\" target=\"_blank\">\u003cstrong>\u003cem>Kaiser Family Foundation\u003c/em>\u003c/strong>\u003c/a>\u003cem>.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/stateofhealth/67388/a-racial-gap-in-attitudes-toward-hospice-care","authors":["byline_stateofhealth_67388"],"categories":["stateofhealth_11"],"tags":["stateofhealth_40"],"featImg":"stateofhealth_67389","label":"stateofhealth"}},"programsReducer":{"possible":{"id":"possible","title":"Possible","info":"Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. Together in Possible, Hoffman and Finger lead enlightening discussions about building a brighter collective future. The show features interviews with visionary guests like Trevor Noah, Sam Altman and Janette Sadik-Khan. Possible paints an optimistic portrait of the world we can create through science, policy, business, art and our shared humanity. It asks: What if everything goes right for once? How can we get there? Each episode also includes a short fiction story generated by advanced AI GPT-4, serving as a thought-provoking springboard to speculate how humanity could leverage technology for good.","airtime":"SUN 2pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Possible-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.possible.fm/","meta":{"site":"news","source":"Possible"},"link":"/radio/program/possible","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/possible/id1677184070","spotify":"https://open.spotify.com/show/730YpdUSNlMyPQwNnyjp4k"}},"1a":{"id":"1a","title":"1A","info":"1A is home to the national conversation. 1A brings on great guests and frames the best debate in ways that make you think, share and engage.","airtime":"MON-THU 11pm-12am","imageSrc":"https://ww2.kqed.org/radio/wp-content/uploads/sites/50/2018/04/1a.jpg","officialWebsiteLink":"https://the1a.org/","meta":{"site":"news","source":"npr"},"link":"/radio/program/1a","subscribe":{"npr":"https://rpb3r.app.goo.gl/RBrW","apple":"https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?s=143441&mt=2&id=1188724250&at=11l79Y&ct=nprdirectory","tuneIn":"https://tunein.com/radio/1A-p947376/","rss":"https://feeds.npr.org/510316/podcast.xml"}},"all-things-considered":{"id":"all-things-considered","title":"All Things Considered","info":"Every weekday, \u003cem>All Things Considered\u003c/em> hosts Robert Siegel, Audie Cornish, Ari Shapiro, and Kelly McEvers present the program's trademark mix of news, interviews, commentaries, reviews, and offbeat features. Michel Martin hosts on the weekends.","airtime":"MON-FRI 1pm-2pm, 4:30pm-6:30pm\u003cbr />SAT-SUN 5pm-6pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/All-Things-Considered-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.npr.org/programs/all-things-considered/","meta":{"site":"news","source":"npr"},"link":"/radio/program/all-things-considered"},"american-suburb-podcast":{"id":"american-suburb-podcast","title":"American Suburb: The Podcast","tagline":"The flip side of gentrification, told through one town","info":"Gentrification is changing cities across America, forcing people from neighborhoods they have long called home. Call them the displaced. Now those priced out of the Bay Area are looking for a better life in an unlikely place. American Suburb follows this migration to one California town along the Delta, 45 miles from San Francisco. 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You can also visit the MindShift website for episodes and supplemental blog posts or tweet us \u003ca href=\"https://twitter.com/MindShiftKQED\">@MindShiftKQED\u003c/a> or visit us at \u003ca href=\"/mindshift\">MindShift.KQED.org\u003c/a>","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Mindshift-Podcast-Tile-703x703-1.jpg","imageAlt":"KQED MindShift: How We Will Learn","officialWebsiteLink":"/mindshift/","meta":{"site":"news","source":"kqed","order":"2"},"link":"/podcasts/mindshift","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/mindshift-podcast/id1078765985","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkM1NzY0NjAwNDI5","npr":"https://www.npr.org/podcasts/464615685/mind-shift-podcast","stitcher":"https://www.stitcher.com/podcast/kqed/stories-teachers-share","spotify":"https://open.spotify.com/show/0MxSpNYZKNprFLCl7eEtyx"}},"morning-edition":{"id":"morning-edition","title":"Morning Edition","info":"\u003cem>Morning Edition\u003c/em> takes listeners around the country and the world with multi-faceted stories and commentaries every weekday. 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On Our Watch brings listeners into the rooms where officers are questioned and witnesses are interrogated to find out who this system is really protecting. Is it the officers, or the public they've sworn to serve?","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/On-Our-Watch-Podcast-Tile-703x703-1.jpg","imageAlt":"On Our Watch from NPR and KQED","officialWebsiteLink":"/podcasts/onourwatch","meta":{"site":"news","source":"kqed","order":"1"},"link":"/podcasts/onourwatch","subscribe":{"apple":"https://podcasts.apple.com/podcast/id1567098962","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5ucHIub3JnLzUxMDM2MC9wb2RjYXN0LnhtbD9zYz1nb29nbGVwb2RjYXN0cw","npr":"https://rpb3r.app.goo.gl/onourwatch","spotify":"https://open.spotify.com/show/0OLWoyizopu6tY1XiuX70x","tuneIn":"https://tunein.com/radio/On-Our-Watch-p1436229/","stitcher":"https://www.stitcher.com/show/on-our-watch","rss":"https://feeds.npr.org/510360/podcast.xml"}},"on-the-media":{"id":"on-the-media","title":"On The Media","info":"Our weekly podcast explores how the media 'sausage' is made, casts an incisive eye on fluctuations in the marketplace of ideas, and examines threats to the freedom of information and expression in America and abroad. 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