A large majority of Californians say they would prefer a natural death, at home, and at little expense to their families. But a new survey by the California HealthCare Foundation indicates that more often than not, they don’t get their wish.

End-of-Life Decisions 15 February,2012forum

Lisa Krieger, reporter for the San Jose Mercury News and author of a personal story about her experience as her father died
Alexander Smith, assistant professor of medicine at UCSF's Division of Gerontology
Kate O'Malley, senior program officer with the California HealthCare Foundation
Dr. Charles Garfield, founder of Shanti and clinical professor of psychology at UCSF and a visiting scholar at the Graduate Theological Union in Berkeley.

  • Jacquelinedl

    i am a medical social worker in sonoma county and feel great frustration with the medical system and the unfortunate financial burden that falls upon families. I am very interested in hearing how other countries deal with frail elders and end of life care.

    • Jane

      I am from England and both my parents lived there. Both ended up in a nursing home (both 92) seven weeks apart and they both died there with no diagnosed cause, though my father i think had had a mini stroke and was having difficulty swallowing.  No intervention was made in either case.  Many elderly go to facilities looking more like country homes than the monster places one sees around here. Quality varies enormously but so does the cost. All is not free with national health. Most i think prefer to stay in their own homes to the end or until they are bed ridden.

  • Lauraaice

    Until 2005, when the Terri Schiavo case came to national attention I had not given a thought to making my wishes known to anyone but my children. Once I was aware what could happen (the government & courts getting involved) I got busy. Filled out an Advance Health Care Directive at Kaiser (my health care provider), had the same information put into my trust, filled out the California form to donate any of my organs which can be used. I also discussed, again, with my children what my wishes are.
    Very important, I think!

  • RN in Petaluma, CA

    I work in a hospital in healthcare and deal with end of life decisions every day. Problems are:
    1) People wait too long to make these decisions and put it in writing…even if you are young. Make a POLST. Don’t make family members make these decisions in crisis.  Many of my patients are demented and have no family/contacts to help make this decision.
    2) If you make the decision to go on hospice care and your insurance is Medicare, you may not have funds to have enough care at home…and if are required to go to a skilled nursing facility, Medicare covers the hospice, but NOT the “room and board” daily charge, which is considerable to most patients.
    We have a palliative care RN and social worker in the hospital who assist families.

  • Daughter

    My Dad recently passed away after 3 years of decline in his health.  about 6 months before his death his dr told him that he was not going to get better, his body was just breaking down.  He had a wonderful visiting nurse, whom my mother is still close to, and she became his Hospice nurse.  They were open an honest about what hospice would and would not do.  Despite all of this medical issues,my 82 year old mother was able to care for him until he died peacefully in his home with my mother holding his hand. He died with dignity and where he wanted to be.  This was because not only was it discussed among our family (he would die at home)  but also because of the honest and caring drs and nurses who treated him with respect 

    • Jane

      PERFECT! What a nice memory.

  • Kristen

    Good Morning..

    I’m a hospice nurse in Healdsburg.  I know first hand how difficult this can be for patients and their families.   Hospice supports comfort and choice at end of life.  We cannot effect the quantity as much as we can the quality of life.  Dying at home is safer and often more comfortable, as Lisa Krieger learned first hand.  It is far more cost effective as well. Physicians rely on us as the experts in symptom management. 

    Talking to your family is of the utmost importance.  What are your end of life goals? Who can carry them out for you? What is important as you are dying?  Communicate these to your physician and get it in writing.

    Hospice can support these goals in  a home setting.  We can have the difficult conversations with patients and their families.  Patients are not always at the end of their lives when we meet them.  They have a terminal diagnosis and need symptom management and emotional support.   They can be under our care for days, weeks, months….It is very individual care.

    Physicians are often afraid to have these difficult conversations and being honest with patients about their prognosis.  It does take different training and being fully present.   Really listening. 

    Excellent show, thank you!! 

    Kristen Brodrick, RN, BSN, CHPN

  • Please withhold

    Like many older people, I live alone, and don’t have close friends or relatives.  Should I become incapacitated or terminal, what should I have in the way of directives?  Is it worth it to hire a geriatric case manager in advance to take care of medical decisions according to my written wishes?

    • Hospice RN

      Look if their is a Council on Aging where you live. They may be a great resource… You can certainly draw up a POLST with your physician or an advanced directive with an attorney so your wishes are clear.  Be honest with your physician about your goals.  Carry it with you…
      Best wishes…

      • POLST for the lay people is Physician Orders for Life-Sustaining Treatment. Greetings “Hospice RN”. Where are you located? The Funeral Consumers Alliance would love to know you.
        Another great resource is CODA Alliance. They have a website http://www.codaalliance.org and they have a wonderful resource list of books, and the GoWish cards. For more ideas contact me jane@finalfootprint.com

    • Clara

      Do you know about DNR (Do Not Resuscitate)  and POLST (Physician’s Orders for Life-Sustaining Treatment)  Please ask your physician about these important forms.

    • Jane

      As I mentioned to a prevoius writer, i would strongly urge you to join a group which could be supportive to you as you age, and in return you are being supportive to people already needing help by being part of one of these groups. you can email me at jane@finalfootprint.com Good luck.

  • Eddie Flayer

    i wonder about the huge profit motive in heathcare and how that affects end of life care? if the hospital makes a ton of money from delivering services then what is the motivation to end a life sooner? hook em up, plug them in in the icu and charge whomever thousands of dollars to do so.

    and i wonder to what degree the personality type of the average physician is complementary to the sort of sophisticated communication needed in this end of life scenario. ie the mechanic  personality vs. the psychotheraputic?

  • J. W. Harrison

    I was very surprised during a “class” on treating/dealing with COPD, the dr. brought up this subject and went on at some length, providing forms and urging the patients to complete them.  Some patients, myself included, were offended that such a very personal topic was sprung on them in a group context.  The dr. seemed blithely unaware that some were alarmed at the death-is-imminent aspect of his remarks, and at the prospect of giving professionals leave to not do their jobs.

    It might make matters clearer if the profession were to be referred to as medicine instead of “care.” 

  • Wishlist613

    Following a fall and big surgery, my mother flipped from mid-stage to end-stage dementia and after 14 days of not eating, now spends her days on hospice care in 24/7 skilled nursing care on a floor with a glass enclosed “nursery” for old-age demented patients who spend all of their days either in bed or in gerry chairs.   However, she decided to eat and drink on her own and who knows how long this can go on?
    As the sole member of my family who has been involved in her care now for 11 years (where no one in our family even asks if I’m dead or alive or need any support myself), I myself have deep feelings of wanting this to be over and long for someone to speak with . . . Suggestions?

    • Jane

      That must be an excrutiating situation. Where are you living. Are you in the bay area. I do have a couple of suggestions. They are both to do with groups dealing with end of life issues,  which might be quite supportive for you. As a member of the Funeral Consumer Alliance we are involved in a lot of different end of life situations. I happen to know a woman living in SF whose mother chose to die and she wrote a book about the experience. However your mother, being in the dementia state wouldn’t be able to make this decision. If you would like to discuss the two groups i have in mind, please email me at jane@finalfootprint.com

      • I believe I am that author. My book, Imperfect Endings, which was about my mother’s decision to end her life, came out in 2010. I want to offer my support and sympathy to Wishlist613. What you are going through sounds very, very difficult. It also sounds to me like you have done everything you can for your mother and that she has taken matters into her own hands by stopping eating and drinking. The end is often prolonged as the body follows it’s own timetable. Be patient and take care of yourself while you are part of this vigil. I wish you well!
        –Zoe FitzGerald Carter

    • J Shoolery

      My mother died at 90 with a stroke following seven years of steadily increasing dementia.  The last year was particularly difficult for me because I felt so pressed by the amount of time she required aftershe lost her ability to walk.  I got to the point where I felt she was stealing my life, and I was resentful.  After her death I felt very guilty.  However, five years later my own beloved husband developed dementia, which is now severe enough that he is in a wheelchair, and I am visiting daily.  I also have the support of a group of people whose loved ones are also suffering from dementia. They make a profound difference in my ability to cope.
      My advice is to call the Alzheimer’s Association phone number listed in your phone book and talk with their phone counselor. Also go to the next meeting.  Or call a Day Care Center near you and ask about the support services they offer (usually free).  Again, if they have a support group meeting–go.  Hearing about other people’s common experiences and getting support from those who know the problem intimately is the best thing I have ever done for myself.  Best wishes.  Judy in HMB

      • Bettykeel

        All of your advice is excellent.  Support groups helped me immensely, and i used the Alzheimer’s 24 hr telephone support wonderful

    • Musicmama2003

      What you are experiencing is called “anticipatory grief”. Your feelings are normal. Many hospices have family and friends caregiver support groups, often at no charge. The sharing is confidential. It might help to have that support for yourself.
      I wish you well.

    • Bettykeel

      Read J Shoolery’s post.  Excellent

  • Pwilburn

    As we appropriate death we also appropriate birth. I remember lying flat on my back with my feet in stirrups as nurses hurridly placed my newborn daughter’s feet in ink, stamping her footprints on a certificate as she screamed. I found myaelf screaming, ‘Give her to me!’until they finally placed her on my stomach. There have to be gentler ways to allow us to enter and exit this life, both painful experiences.

  • Maggie

    Exactly a year ago my 88 year old mom died at home, 11 days after suffering a massive stroke which left her essentially in a coma.  She had just returned home from a two day stay in the hospital where an MRI indicated she had malignant tumors in her digestive system.  Both my sisters are doctors.  We children decided my mom would get her wish to die at home.  We had hospice assistance and drugs, etc. to keep her comfortable, but did not see the sense in doing anything extraordinary to get her well enough to die a painful death from cancer. It was hard, especially for my two sisters not to admit my mom to the hospital, but  we got the wonderful gift of time to be with my mom , read poetry to her, sing Girl Scout songs to her (she was a Girl  Scout leader) and say good by.  It truly was a gift. 

  • Fredda

    Thank you for this outstanding forum. As the author of SAYING GOODBYE TO SOMEONE YOU LOVE: YOUR EMOTIONAL JOURNEY THROUGH END OF LIFE AND GRIEF…and the Clinical Director at OUR HOUSE Grief Support Center, I applaud your program. I educate all the med students @ USC & UCLA med schools on communicating at end of life. Thank you also to Charles Garfield…we learned so much from our Shanti days. Fredda Wasserman

    • Jane

      Where are you Fredda? I have heard of your book but its not in my library! Perhaps you could be a presenter at one of our meetings put on by the Funeral Consumer Alliance in Palo Alto. I have served on the board for several years, and now provide biodegradable caskets to families and funeral homes. I also help with home funerals if people need help and support.

  • Veronica

    Are any of your guests aware of the Amanda Trujillo RN case in Arizona.  She educated her patient about the the surgery was about to undergone for a terminal illness, versus going home to spend time with family and she ordered a consult with a social worker to discuss hospice care.  When the doctor found out he was not happy.  All this happened about a year ago, RN Trujillo lost her job and is still fighting to keep her licence.  Can they talk about other motives that providers have for pushing treatment, and what nurses can do to protect their jobs while advocating for patients. 

    Veronica BSN RN /Oakland CA

  • I’m a Berkeley MBA working on a website to help people make, capture, and communicate important end-of-life decisions – we’re still early in the process, and would love to talk to anyone who has feedback on this, and wants to influence how we implement it. We have a blog at http://legacynetwork.wordpress.com or you can email me at christophertar@gmail.com

    Our thesis is that there are many more people than thought that would be happy to talk about these issues ahead of time, and remove uncertainty by capturing wishes and preferences ahead of time. 

    • Jane

      We at the Funeral Consumer Alliance would love to talk with you. We had a huge turnout last month when we gave a presentation about end of life issues. We showed everyone how to use the CODA GoWish cards, which area wonderful tool for starting a discussion and the results get put in the form and you have it notorized and put in your end of life wishes. Lets email. I’ll write you. Jane Hillhouse

  • Nancy Lea

    Having a “directive” of living will is no guarantee.  My mother was living in Arkansas during her terminal illness and EVERY TIME we took her to the hospital, we were told that we had to have a NEW one done.  NO. they did not keep it from one hospitalization to the next.  As you can imagine, this was very, very stressful for all concerned.  Make sure you know what your hospitals’ policies are on this and consult with a lawyer so that you have one you can put into use whatever your loved-one’s condition.  She ended up having a LOT of needless and painful “diagnostic” procedures done, (since she had excellent insurance, I would guess, and they could collect money from them…never mind whether then made NO difference in her treatment or quality of remaining life) and that just should not have happened.

  • Dough802

    I wonder what percentage of Ms. Krieger’s fathers hospital bill was profit? I know we had this debate but I think that situations like Ms. Kriegers highlight the moral banckruptcy of a “for profit” healthcare system.

    • Jane

      the organizer of our elect Obama group in Half Moon Bay is meeting with him tomorrow and top of the agenda is health care. Single payer, and get the insurance companies out of the middle. We’ll see what comes of that and the rest…

  • Bert Olson

    Experience – mother and father died in their late 90’s. Wife died at age 62. All had end of care directives and had open discussions with family. 

    My opinion is that the US health care system does not want to openly discuss end of life issues. Best example my wife had a brain tumor (GBM-4). The initial surgery was a simple decision. The surgeon was dismissive. HIs goal appeared to be to make sure the next treatment was with a radiology service he co owned. My wife asked the head of radiology “Is this going to do any good or are you doing this so my husband’s insurance will pay for your expensive machine. This was pre google and we were having great difficulty a straight answer. After three months we found a doctor who best comment was “If you were thinking of taking a family vacation I would take it soon”. My wife died at home in hospice care. Family members from Ohio, Wisconsin and Australia were able to come and see her. Hospice is great!

    Bert Olson

    • Jane

      You are so right. Dreadful story, but oh so common.
      Join our Funeral Consumer Alliance we need new members. Many are dying and having health issues. We need new blood!!

  • Gerre McKenna

    I am a resident at St. Paul’s Towers in Oakland.  For 2 yrs we have had a resident led End of Life Planning Steering committee providing programs on these issues, using Bill Moyers :On Our Own Terms” as the guide for our planning.  We started with his segment on palliative care, but progressed to having speakers from Hospice, Compassion and Choices and someone to talk in depth about Advance Decisions.  We are continuing this year, covering some of these issues again and adding the options for handling remains with a panel from Green Burial, SF Body Donation, Cremation, Mortuary. Of course, we have also had a panel with the doctors and nurses from our own skilled nursing facility presenting how they look and address these issue. What has happened even in a setting with most of us in our 80s and 90s there was great resistance to talking about these issues, and our attendance of 80 plus residents and family members indicates the has changed dramatically.  
    Gerre, a resident

  • Herc96

    i have been a physician for 25 years. Families in general have no concept of the cost and invasiveness of the procedures and technologies that keep the living dead housed in our ICU’s and hospitals. Furthermore, society in general has no acceptance of death. Dialysis for people in their 80’s and 90’s is just one example. It goes to the heart of our beugetary problems, where people want less government but they want to receive social security, health care, and a strong defence that takes up 75% of the budget.

    • Jane

      Yes this is part of the American way very sadly. They don’t talk about death, don’t think they will ever die. A young student at UCD visited my booth of biodegradable caskets, at their annual earthday event, and he was offended and told me he thought this wasn’t an “appropriate place for my products”. Tell that to the parents with still born babies who were thrilled to receive my compassion and my caskets. Being English in origin the difference in handling this issue is day and night. Also we have over 250 natural burial sites in England we don’t even have 2 dozen in the States.
      I know a 96 year old who just received a pace maker. If she were on CoQ10 and related enzymes she probably wouldn’t ave needed that!!

  • Jrich63041

    this is so good. my family has always been up front about death and dying….the night before my dad died he asked me if i made good money,,,i said yes,,,he said don’t piss your money away…that caused many laughs for many years and when his youngest brother died i said to him…when you see my dad tell him i am still pissing my money away….he said that’s what it’s for isn’t it….we are all still laughing about that…..

  • I went through a very difficult death experience with my mother.

    mother, thank God, had resources to afford in home care. She didn’t
    want extraordinary measures taken. She knew no doctor could fix her. Her care was strictly palliative. Her
    doctor checked in, but knew her job was over, there is no cure for end
    stage kidney disease. It was very hard for my mother to accept the
    “strangers” in the home but ultimately grateful for these compassionate
    care givers, simple women in small town Indiana who didn’t have nursing
    credentials, but had patience and compassion. My brother and sister and I
    are so grateful for them and their dedication.

    These wonderful caring women were not
    making a lot of money, but 24 hours a day adds up! Near the end, we had
    to have 2 on duty, as my mother required help in getting out of bed
    to use the facilities. I spent the last two weeks of her life with her
    and these women, and they were available to me to speak to and offer
    compassion and insight into the dying process, as all of them had had
    experience with it numerous times, including their own parents.

    kind of help is NOT covered by any form of Medicare, Medicaid, or
    government help. If you can’t afford it, you can’t have it! We were very
    lucky. My mother spent her last weeks in her bed, in the home my father
    built for her, and in April as the flowers were blooming she passed
    away. I would hope this kind of death were available for more
    people…unfortunately, it is not.

  • The Funeral Education Foundation is a non-profit who’s charter is to educate the public about end-of-life topics including planning.  Membership in the Foundation ensures that loved ones know the your plans and wishes.  Many local funeral homes/mortuaries provide discounts to members.  Go to our website http://www.fcapeninsula.org or contact us at 650.321.2109

  • This was a great discussion and I really appreciated the guest who spoke about how death is sometimes “stolen” or appropriated by others. My mother was very concerned that this was going to happen and had “Do Not Call 911” signs taped up all over her house. And, in fact, she ended her own life at the age of 76 in a very conscious and deliberate way. 
    I do wish that there had been some discussion of a patient’s right to end their own life — on their own terms and at a time of their choosing. I feel it is important to acknowledge this option, even as the current legal and medical systems do not. 

    -Zoe FitzGerald Carter, author of Imperfect Endings (Simon & Schuster)

    • Jane

      Hey ZOE there you are!! Just mentioned your mother, but sadly the lady posting was not in your position. Her mother already has dementia so can’t make the decision to stop eating and drinking. How are you. The program was way too short and didn’t have enough of the alternative types of help people can have. Also clergy don’t help people at the death. I even discussed this with a clergyman and he admitted it and that they need better training!

  • There is a very informative grooup nationally, with an office in Palo Alto, called the Funeral Consumer Alliance. (www.funerals.org). We hold meetings, organization discussions regarding end of life issues, last wishes, and I personally help any families wishing to have their own home funeral. You do not need to be embalmed, or go to a funeral home. I also provide biodegradable caskets for those wishing to leave a greener footprint. http://www.finalfootprint.com. Jane Hillhouse Please call if you are confused about these issues. 650 726-5255

  • Antjon Johnson

    Last year my mother opted out of Hospice after enduring their treatment for a few weeks.  The agency seemed more interested in making sure that they achieved their “billable hours” than providing her with comfort and care. They would show up without an appointment, though she had requested them not to.  They made promises they could not fulfill regarding provision of medications, requiring family members to drive long distances to the health care facility that could have mailed the prescription, had we been correctly informed in time to order the medication as we had prior to registration with Hospice.  My understanding is that this is a for profit agency.    

  • Margie

    Funeral Education Foundation out of Palo Alto, CA, can bring a program about Advance Directives, Estate Planning, Organizing Your Affairs, etc. to churches, organizations, senior residence, senior centers, etc.  Just call 650-321-2109 to arrange a time.

  • Marie

     I have many elderly friends (and my deceased parents) who are uniformly not afraid of death; they fear dying in America.  They all have POLSTs, Advance Directives, and/or Medical Powers of Attorney.  But their personal research has shown that they will still not be allowed to die as they wish, by their doctors and the institutions where they now live. 

     I don’t know anyone who wants any level of care beyond palliative, and I don’t believe the desire to return to a pre-moribund state at any price is all that wide-spread. Of course, in the general population, more outreach/education is needed, but that’s only  part of the story.  I suggest that we look more deeply into the real causes of expensive end-of-life care — among those whe have already made their cholces and taken all the recommended steps to communicate their wishes, but are not allowed to carry them out.  I’m betting you’ll lay the problem at the feet of physician education and the legal system.  

  • Both of my parents were hospitalized before they passed and in both cases we saw what I can only describe as a “conga line” of doctors we never saw before come through, check some vitals, ask a few questions and leave.  A month or two after each passed here came the bills!  $200 for this one, $200 for that one, $450 for the therapist who spent 10 minutes in the room, etc.  None of us can see into the future, but we never got an honest opinion from anyone that my mom only had a few days left – we just sat there with our strong sense of denial and hoped that somehow she’d get better.  Had we gotten an honest opinion of her actual condition we could have taken her home where she no doubt wanted to be. Luckily for my dad they recommended hospice care and we were able to do just that.  A few days later he died peacefully in his sleep in his own home.  Not to be too cynical, but I wondered after we took him home if there was a specialist or two who regretted not stopping by while he was still there in the hospital.

  • Nrizk

    As the medical director of a major ICU, I’d like to say that physicians and family alike need to adhere to two simple principles.  First patients or their surrogates must have the opportunity to pick among medical options for their care; and second, options presented to patients need to be realistic ones or  at least given with some estimation of the likelihood of the therapy being successful.  Far too often options are presented or selected without reference to the burden of the therapy, in addition to its benefits, and even more often, presented without the patients understanding well what is most likely to happen under each scenario.  Caring is about more than medical intervention, and inpatient interventions frequently rob patients  of their last moments with family.  All of us need to show more courage in facing the end of life, in helping our loved ones through that time, and in supporting comfort care rather than invasive care when appropriate.  Medical interventions can be nearly miraculous and a blessing or disruptive and painful. It’s  incumbent on physicians  and families alike to sort out which we’re delivering, because it must be about the person in the bed.

  • wda

    I see dead people.

  • As always, thank you for your quality programming Michael!

    This is a special invitation to attend a free community lecture hosted by Hospice of the Valley of Northern California, Santa Clara University and the Commonwealth Club of California as we present Compassion in Action “The Best Care Possible”: What It Is and How to Get It – featuring one of the nation’s foremost palliative care physicians in the country, Ira Byock, MD, author of The Best Care Possible, A Physician’s Quest to Transform Care Through The End of Life on Thursday, March 29, 2012 from 7:00pm to 8:30pm – Mayer Theatre, Santa Clara University.
    Who should attend: general community, health care professionals, eldercare and spiritual care providers.
    To RSVP, visit compassioninaction2012.eventbrite.com or for more information visit hospicevalley.org/professionalevents.
    Please join us as we continue the conversation.
    Sally Adelus
    President and CEO of Hospice of the Valley of Northern California

  • StephH

     As a palliative medicine physician, I resonate with
    what has been said here.  I wanted to add that in this era of “informed
    decision-making” and “patient-centered care,” what could be more
    patient-centered than having meaningful discussions between clinicians
    and patients
    about what patients want during these tough times.  That being said,
    these conversations are not easy, and in medicine, we need to train
    physicians with the skills to have these conversations.  It was great to
    hear the medical student comment that this training is starting to

    And KQED, thank you for this forum.

  • Bettykeel

    Thanks to my granddaughter, who works for Shanti, and sent me this email, I was able to listen to the worthwhile program on the  SF station,.  I live in LA.  It was very informative.  I will be 88 next month, and so far in very good health, and have taken care of the necessary papers, but was glad to listen to the program.

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