Lillian Rubin is 88 and her health is declining. After watching her husband slip into Alzheimer’s, she says she wants to choose when and how she dies. Should we make that final choice for ourselves? Or should we prolong life no matter the costs? We examine these questions, and how social policies shape our views on aging.

Lillian B. Rubin, sociologist, psychologist, author of the recent Salon article "Let's Talk About Dying" and author of "60 on Up: The Truth About Aging in America"
Ken Dychtwald, Ph.D., psychologist, gerontologist, author and president and CEO at Age Wave, an organization that focuses on studying population aging and its business, social, health care and cultural implications

  • Very personal subject for me. End of life issues do not always revolve around the elderly. I removed my infant son from life support and there are few resources for people like me. Parents dealing with end of life issues surrounding the young.

    • 1PeterDuMont2STARALLIANCE8

      Joseph, Thanks for sharing this touching “window” into your experience. May it bring more support for this category of the bereaved.

  • Walker Prospect

    Yes, the “health care system” is partly responsible for the difficulty in achieving “the good death”, but we must remember that, when there were discussions about having Medicare reimburse physicians for having end of life discussions (something which is roundly supported by the vast majority of primary care physicians), our body politic allowed the right to squelch this benefit by labeling it a “death panel”. The fact is, our society does not give physicians the authority to make decisions about the futility of care and discourages them from discussing the end of life.

  • IxchelDelGato

    When my dog was at the end of his life, the vet was very adamant about how long we could let him go without water or food before we absolutely had to bring him in to be put down, so that he wouldn’t suffer.

    When my father-in-law was at the end of his life, having been completely unconscious for several months at that point, all the doctors could do was unhook the feeding tube and wait for him to slowly starve.

    I just can’t see how that’s right.

    • James Ivey

      I was just going to write nearly the same comment. Some people shame me for letting pets live beyond a “quality” life. Some people consider it immoral to let a pet live beyond its ability to run around outside. Oddly, the very same people tend to consider euthenasia of people extremely immoral. The truth has to be somewhere between those extremes.

  • Rabbi Me’irah Iliinsky

    Greetings. I am so glad you are bringing this topic to the public. I am a rabbi, have done chaplaincy, and my congregation (of which I am a member) is doing a 4 part series on the end of life. The second session, “preparing the body & soul for the journey” is Tuesday evening, January 15, 7:00 PM at Or Shalom Jewish Community at 1250 Quintara 22nd Ave. I have been at the bedside of many a dying person. The question is do we want to be “above ground” alive, or quality of life alive?

  • Rabbi Me’irah Iliinsky

    There is a difference between allowing someone to die, and doing assisted suicide. I agree that many times in the hospital, with the tremendous resources and gadgets we have, we can keep a dying person alive and suffering a great deal longer than “God” would take them naturally.

    • mark

      That difference is incredibly easy to blur though. What about a person who is so near to the end of life that they have no energy to eat? What about if they decide they no longer want to eat?

      What if you (as a caregiver) don’t know which it is? I think that assisted suicide in a person with a terminal illness is essentially allowing them to die, but on their own terms.

  • Ken Stofft

    During the last three months my health has declined and I personally believe, from identifying the symptoms, that I have lung cancer. I will have this checked out by a physician. However, I want the choice to end my life before going through the same passage of pain that I have seen others with lung cancer go through as well as put any of my family and friends through the horrendous cost and emotional pain. I have not found a reasonable way to conclude my life and that is what i am also going to research. Do you know of an organization or person who I can talk with? Thanks.

    • Ruth

      Please ask your doctor about palliative care. While they will not help you end your life, they will help you make the time you have as high quality as is possible.

    • Joan

      Please look at the Compassion & Choices website. A volunteer will come to your home and discuss options. Very best wishes

    • mark

      My father had Lewy Body Disease (a dementia similar to Alzheimer’s). He held on for as long was good for him, but he told us from the beginning that he didn’t want to end up disoriented in a hospital with tubes everywhere. It ended up that in february nearly two years ago he decided to not eat breakfast and never ate again. It was a selfless, courageous, and tremendously admirable decision and removed an incredible burden from his family’s shoulders (not only with increasingly demanding burden of care, but to know that he never wanted to let the disease take him away meant that we would have to make the decision at some point if he never did).

      He died in his living room surrounded by his family after a saying his goodbyes on his terms to all his dearest. It was a beautiful thing.

      He consulted this book before and during his decision:

      All the best wishes to you and your family.

  • TimDoyle

    Susan Sontag’s son wrote a book about her powerful struggle with life death issues.

  • Sara

    Caregivers are heroes but not ever by choice. we are thrown into a situation which not one person who is a caregiver entered into by choice If we chose to take on a person who needed this intensive care, that would be heroic, bu for the caregiver who enter into by chance, it is just a matter of survival day by day.

    • TimDoyle

      “Caregivers are heroes but not ever by choice”, I agree and it reminds me of Stephen Crane’s novel Red Badge of Courage.

  • Excellent, emotionally resonant and provocative discussion. Thank you, Michael.

  • 1PeterDuMont2STARALLIANCE8

    Morality of social finances re end of life

    Thanks for the important discussion.

    Just a short note to raise the issue of moral public policies re end of life care.

    It seems obvious that too much public spending on health care at the very end cannot be right when young people are suffering unduly without adequate medical and social support.

    So the questions become where to draw the line, and how to draw it.

    This is one area where dispassionate statistics should provide a major assist. Let them inform the “where,” aspect, and then we can focus the main debate on the “how” part.

  • Livegreen

    I want to thank Forum, Michael, Lillian & Ken discussing these very difficult decisions. When are we going to be able to transform these personal evolutions into public policy?

    The last politician to take on this issue, Gov. Richard Lamn of CO, was pilloried in the media for his calls for reasonable reform in end of death decisions. Nobody has taken this on since. Who will, and who will support them?

  • Susan Alexander

    I recently lost my mother to Alzheimer’s. She was in a facility for the last five years and showed symptoms about seven years before that. I mourned the amazing person my mother was died long ago, but I still had to go visit and care for the bag of bones that was left. I learned last summer that it was legally within my power as her health proxy to ask that she no longer be given food and water, but the facility refused to honor my wishes which surely reflected what would have been my mom’s. Had she known what effect Alzheimer’s was having on her and on me, she would have killed herself long ago.

    Our society, as reflected by our care facilities, must honor the wishes of the dying, even as reflected by their loved ones who knew them best. To fulfill my mother’s wishes, I had to bring her home to die.

    As Lillian said moments ago, her dying in my home allowed me to rehumanize the bag of bones that was my mother back into my beloved mom who was dying. It was a very healing experience.

  • robert liner

    I’m a physician. I work with “Compassion and Choices.” We encourage discussion and helped with passage of the “Terminal Patient’s Right to Know Act” here in California about 3 years ago. We also agree with many professional organizations that say use of the term “suicide” is misleading in the context of a patient suffering from a terminal illness.
    The disease is killing the patient, who would like to live were they not
    facing imminent death. So we shouldn’t refer to physician assisted suicide. Assisting a suicide remains a crime, but physician aid in dying is ethical, compassionate care for which existing statutes about suicide should not apply. Robert Liner, M.D.

  • Reanna

    When my father-in-law was dying and in the ICU at Stanford hospital last year, the staff there asked us if we wanted to put to on life support. They told us that there was little hope of him ever recovering to any type of life outside of being on life support and if we did put him on life support, at some point, someone would have to decide to pull the plug. They said this can be very difficult since most people see this a murder and leave the person on life support indefinitely. So our family decided that since dad never wanted any tubes, we would let him die naturally. It took him 3 days, which was enough time to get family over to say their last good byes, and was very peaceful. I’m so glad the Dr’s at Stanford were so kind in not just thinking about their patient but the family as well. Dad was very comfortable in his own private room and plenty of pain medication. We were all there, holding his hand when he took his last breath.

  • Sarah

    As a nurse who works with older adults I am in interested in better ways of communicating end of life options and hypothetical end of life scenarios to patients. One tool that seems promising is the use of video to show “life prolonging care”, “basic medical care”, and “comfort care”. Angelo Volandes, a Harvard doctor has developed several “shared decision making video tools” for this purpose.

  • nancynoonan99

    As an ER nurse in the Bay Area i see many elderly in fairly vegetive states being kept alive in SNF’s (skilled nursing homes) by family members who will have no where to go once Mom is ‘gone’. The home is a crack house now. Sometimes they are even being paid to keep mom in that house as her ‘caregiver’. The state is overwhelmed and cannot reasonably check out all these ‘caregivers’. The state also doesn’t check the nursing homes that have staff and residents on drugs like crack. Where do you find people to work in SNF’s that house the shot up, crippled gang members and drug dealers. You won’t get the cream of the crop employees. Yes. Crack parties even happen outside the SNF’s and hospitals. Any store near a hospital can tell you o seeing patients panhandling down the street.

    We are also snatching people from the jaws of death who have been on the MediCal system their adult lives and have lived a life of crack, meth etc etc. We work hard to keep them alive, send them to ICU so they can go home and do it all again.

    Sorry for my rant. I am a taxpayer. I am a nurse. I care but I am fed up.

    BUT- we will continue to do our job properly and not think twice about it until later and we can only shake our head. It isn’t our decision to let anyone die.

    • 1PeterDuMont2STARALLIANCE8

      Thank you very much for your honesty and sharing. You can likely make a big difference by making notes and reporting each case where you see actual evidence that you could witness officially. Then send a copy to Governor Brown’s office and a newspaper or two, or some online resource. Keep it up and the whole phenomenon is likely to start getting the attention it deserves. The dollar stakes are so huge. Society needs its responsible eyes and ears on the ground everywhere.

  • What this discussion displays most clearly is the prevailing confusion and ignorance in our society concerning the reality of the dying process and our legal rights and responsiblities concerning it. For example, choosing to not artificially prolong another’s life is not euthanasia anymore than refusing a feeding tube for oneself is suicide.
    Dr. Dychtwald and Dr. Rubin both carry the message to which American adults are most resistant: 1) you are responsible to know your legal rights concerning health care and end-of-life care, 2) you should choose effective advocates in case you are incapacitated, and 3) you have an obligation to communicate your wishes for care to your loved ones and give them permission to honor those instructions. I applaud their expertise and efforts.
    Of course, before one can discuss one’s own death, one must accept its inevitability. Good luck with that.

    Jo Kline Cebuhar, J.D.
    author of
    Last things first, just in case…
    The practical guide to Living Wills and
    Durable Powers of Attorney for Health Care

    • 1PeterDuMont2STARALLIANCE8

      Great. Thanks!

  • Pontifikate

    Why is there more discussion about “death with dignity” than about how to live with dignity? I’m not sure what the term “death with dignity” is, but why don’t we pay as much attention to living (when sick) with caring people in a comfortable, homey place, getting the care we need until it no longer is feasible. Not everyone wants to die at home — some people’s homes are tiny, crowded, uncomfortable places where family and friends can’t gather. Not everyone lives in commodious homes.

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