Right to Die II dreamstime_798117He pleaded with me to shoot him and the request wasn’t figurative. He was my first patient as a hospice volunteer in San Francisco and I was forced to think about the right to die.. That moment, eight years ago, still haunts me. Not because I was confronted with a real life decision of immense consequences, but rather because I knew that I couldn’t honor his request, nor relieve the enormous psychological pain he was enduring—one that lasted for the next few months until he died.

The Right to Die

It was the first and only time I was so directly confronted by the issue of a person’s right to die—from the person who wanted to control the timing of his or her own death. At presentations that I do, both in the United States and other countries, the question almost always comes up, “Do you believe in euthanasia? Do you believe in the right to die?”

It’s a question almost always asked by someone who has strong ethical or moral convictions about the right to die. Instead of answering the question immediately, I try to learn about the person who’s asking it. Always, I find that their question is theoretical—there are no immediate real-world consequences for either themselves or anyone they know.

They ask it because of a campaign for or against euthanasia, something heard on television, read in a newspaper or religious journal, or it’s related to deeply held religious, ethical, or moral convictions. When I ask, “But are you dying?” The startled answer has always been “No.”

Who Should Determine a Person’s Right to Die?

And I believe that’s the problem in most discussions about the right to die. There’s an old Arab saying, “If you want to know how well the medicine works, don’t ask the doctor, ask the patient.”

The way people who are healthy perceive their world is very different than someone who knows he or she has months or only weeks to live. The healthy person believes there will be enough time to make amends for their unskillful words or acts. For many terminally ill people, they know there won’t be. And with that realization, comes a shift in how they perceive their world and the relevance of values that have been untested in the crucible of living.

Suffering and the Right to Die

For some, like the late Reverend Rosi Jiyu-Kennett, the Abbess of the Shasta Buddhist Abby, adversity was viewed as a gift. One of the monks had the evening assignment of making sure she was comfortable before going to bed. As her cancer progressed, she was in constant pain. According to the monk, as he left her room he heard her say something like, “Thank you dear Buddha for giving me one more day to perfect myself.”

Roshi Jiju-Kennet looked at every day—even those filled with intense pain—as an opportunity to become a better person. Others also felt that their life was sacred.

A devote Catholic patient of mine was in enormous pain despite the heavy dosages of medication. For her, although she wished for an early death, her beliefs dictated that “God will take me when he’s ready.”

But for many other patients I’ve served, how they approached their deaths wasn’t quite as unambiguous as it was for Roshi or my devout patient.  Knowing they would die soon changed how they viewed most things, including the values they thought were unassailable. I’ve listened to the words of terminally ill patients as they contemplated their journey towards death. For each, their view was partially determined by their past.

For some, there were no regrets, and their approaching death held no psychological demons. But for others. there were many. One athletic patient with ALS (Lou Gehrig’s Disease), was painfully obsessed with the thought of eventually being unable to move any part of his body. My first hospice patient believed he was responsible for the death of his son, and expressed remorse whose depths were unimaginable to me, as a father.

In discussions of the right to die, the focus tends to be on the physical pain a person is enduring. The argument is often made that with advances in palliative care (pain reduction) virtually all pain can be reduced to tolerable levels or eliminated. That’s not always true, especially if someone wishes to remain alert until he or she dies. And it completely ignores the psychological pain many of my patients have shared with me.

The religious and spiritual values that people use to guide their own lives and deaths should be respected, regardless if that involves the sanctity of life in Catholic doctrines, the Buddhist belief that adversity is important for preparing oneself for the next life, or the decision of a dying person to determine when his or her intractable physical or psychological pain should end.

What I believe is disingenuous is when someone who views their own death as beyond a distant horizon suggests how someone who is about to cross it should die. So the next time someone adamantly opposes a person’s right the die, ask the question, “But are you dying?”

45 Responses

  1. Viv

    Thought provoking as always. As a medical student, my next block is cancer care and as a former diagnosee myself, I am not sure that makes me more or less qualified to speak to patients….?

    Reply
    • Stan Goldberg

      Hi Viv,
      I think you having cancer makes you more qualified in understanding the emotions of patients than physicians who have only treated it. I’ve found that physicians fall on a continuum of two extremes. On the one end are those who emulate the television persona of “Dr. House”, who views every patient as a puzzle. At the other end are the Mother Teresa’s of medicine who clothe patients with compassion. I think the task of every new med student is to find that balance. Having experienced what it feels like to have a life-threatening illness definitely gives you the perspective to choose wisely.

      Take Care,
      Stan

      Reply
      • Tracie Ritchey

        Your articles are wonderful and comforting. I suffer from chronic illnesses that are slowly taking away everything that made me .. well, me. I am still at the fighting stage and am currently trying to start a nfpo aimed at others like myself, those with much to give, but cannot be tradionally employable teaching thru projects how to do ‘green’. I often find myself apologizing for just being me. Sorry is at the center of many conversations, sorry I can’t come over or go out as we planned, etc.. It is so hard when you have to explain over and over and apoligize for your life, especially since I did not chose to have my life end up like this. I’m tired of apologizing for not being who I was, when I am still mourning that person as well, while trying to learn to live with who I am now, while planning for who I will become. Again, thank you for understanding and trying to explain it to others:)

      • Stan Goldberg

        Thank you Tracie for your kind words. What you express is similar to what many people with chronic illnesses feel. One of the most difficult things is to accept a new identity, especially one that isn’t familiar or acceptable to old friends.

      • Tracie Ritchey

        You would think that part of mental health advocacy would include education such as you offer in your papers and on your site. .Thank you again and if I can ever help don’t hesitate to contact me. .

  2. David Michie

    Brilliant! Once again, Stan, I so wish everyone in the world could read this article. It is common sense, but so uncommonly heard – and authentic and beautifully expressed as always.

    Reply
  3. Heide Randall

    Thank you for this article. Very well written, and perfectly stated.

    ~Heide

    Reply
  4. Damiano de Sano Iocovozzi MSN FNP CNS

    Dear Stan, Thanks for another heartfelt article. I was a new grad student working on a respiratory unit at the VA on the night shift, the only RN with LVNs that night. Mr. C. had been struggling with a distended abdomen due to ascites (fluid) & a merciless abdominal tumor. The enormity of the ascites underneath was begining to strain the skin & it was beginning to rip & drip clear yellow. His wife & children were all there. Mr. C. was awake & alert with bright eyes. I asked him if he’d like a little pain medicine through his saline lock. He said he was really uncomfortable. Shortly, I had a syringe with about 4 mg of morphine & some saline to push the drug in. I decided I’d just give him 2 mg to start & slowly pushed the drug in. He watched me the whole time, squeezed my hand, winked at me & then passed away. You can imagine my shock, but that smile made it all worth it. That morning I confessed to my head nurse that I killed him. She took my hand & said, “No, Dom, you didn’t kill Mr. C. You just walked him to the door.” That’s when it dawned on me that intention is everything in pain relief. He was waiting for someone to walk him to the door. Damiano

    Reply
    • Stan Goldberg

      Hi Damiano,

      What an incredible story. I’ve found that when people enter unique situations, with their eyes fully opened as you did, they come away different. Their perspective, understanding, and/or values change.

      Take Care,
      Stan

      Reply
    • Georgia Moen Place

      ….he was waiting for someone to walk him to the door.
      Very weill said Damiano!

      Reply
  5. Caryn Isaacs

    My role as the Patient’s Advocate is to respect the wishes of the patient, above the family or the doctors. In many cases, I am the health care agent who will make the decision to withhold any medical care that only serves to prolong dying. You are right on about patients wanting to talk only about that unfinished piece of business. My own mother wanted to tell me the story of her high school sweetheart who was killed in the war. She wanted to explain that this event shaped many of her feelings and actions throughout her life. She had never told us the story because that’s just not how people relate to their children. She was a wonderful mother and grandmother who always put other’s needs first. Going through this story, instead of tending to her physical pain and talking about doctors plans, is what I can now remember of her last days. I think it helped her a lot. It certainly helped me.

    Reply
    • Stan Goldberg

      Hi Caryn,
      I think your poignant story highlights the importance of experience in the formation of values. There was nothing theoretical about what you felt as your mother revealed a vulnerable part of herself. If I ever need a patient advocate for myself, I would feel very comfortable with you at my side.

      Take Care,
      Stan

      Reply
  6. Carol Newman

    Brilliantly said, Stan. I don’t know how I’ll feel when death comes knocking but I’m thinkin’ severe discomfort would reduce the fear and motivate me into passing over. I don’t want to be taken by surprise.

    Reply
    • Stan Goldberg

      Thanks for your kind words Carol.

      I’ve been doing this for 8 years now, have witnessed numerous discussions by patients and families about whether or not to hasten death or allow it to occur naturally, and like you, I don’t know what I would do when it’s my turn. And I guess that’s the take-away from the article. No one really knows what they will do. And therefore it’s presumptuous to tell others what they should be doing.

      Take Care,
      Stan

      Reply
  7. Tammy McLean

    Hi Stan:

    Thank you for your beautiful writing and perspective. What I have heard often and most recently is “We wouldn’t treat our dogs like this”. On a busy medical or surgical floor there often isn’t time to explore with the family members where this comment is coming from. What kinds of things would you say in response?

    Tammy

    Reply
    • Stan Goldberg

      Hi Tammy,

      First, thanks for your kind words. As to how to answer the question-that’s difficult. My experience (personal, professional,volunteer) is that comments such as the one you quoted often reflect the feelings that patients and family members are just part of a complex puzzle. They view many in the medical community more as Dr. House on television rather than Mother Teresa. Obviously either end of the continuum isn’t good for the physical and mental health of patients and families. But, comments such as you quoted says to me that nobody is listening. And unfortunately, many people in the medical community haven’t be trained to listen. When a staff member breaks the pattern, and takes the time to listen, the effects are enormous.

      Take Care,
      Stan

      Reply
  8. advicesister

    This was thought-provoking. The real issue is the lack of legal options to have control over one’s body. If yoi are too disabled or demented to do it yourseld you are helpless. My dad was a prominent physician who strongly supported righta for dying but became too disabled to help himself. I knEw his wishes buit I was helpless to do anything to help him. Hje finally died from a swallowing issue but had to die of starvation. What a sad wauy to go

    Reply
    • Stan Goldberg

      Your comments are so true. I’m in contact with people who are in the early stages of dementia and other illnesses. One of their greatest fears is that they will not be able to convey their wishes when it’s most crucial. I always recommend DNR’s, POSLT, 5 Last Wishes, Living Will, and any other form that gives loved ones the right to make decisions when they can’t. I know, it still doesn’t address the bigger issues of the right to die. But it is a step towards it.

      Take Care,
      Stan

      Reply
  9. Barry Willdorf

    Good insights, as usual Stan. Dying is the most personal thing we can do. Dying represents different things to different people.

    And I’m not comfortable that anyone else should intervene in that decision, especially legally, to prevent it. But also, I don’t like the idea of being put in the position of assisting or accommodating the wishes of person who wants help dying. I think the survivors bear a terrible burden either way and probably, wherever possible, the terminally ill should take responsibility (and be allowed to take responsibility) for their exit strategy. Sometimes, this doesn’t work out. We are not, after all, masters of our own fates, though we like to pretend we are. There’s no single answer. Everything is anecdotal.

    Reply
    • Stan Goldberg

      I agree with you completely Barry. What I’ve found is often searching for the “best” answer doesn’t work. However, I’ve watched people become more comfortable with choosing the less painful one.

      Reply
  10. Greg Gifford MD

    Points well taken, Sir. It seems almost all dying people eventually want the same things – peace of body and mind. I work with very loving people (we never declare that – we call ourselves “professionals” – but patients figure it out.) Benzodiazepines, Schedule II narcotics, home infusion pumps surely help peace of body, but caring (really, feeling loved) is better for peaceful minds.

    You made another point in one of your responses: In a previous ER life it seemed that often there were no good alternatives. All were so bad it feel wrong to use the word “best.” I chose, and encouraged others to choose, the least bad one.

    Reply
  11. Tani Bahti

    Thank you for a great article, Stan. You are right that there are no good and clean answers – whether to teach healthcare students, or respond to pts and their loved ones. Until faced with it, it’s hard to guess. I find the dying process can be very transformative, both the for the pt and all who bear witness. That’s why I did a film called “Liging Through Dying – The Struggle for Grace”. Beginning to understand our own fears and issues is beginning to become aware and hopefully more compassionate. Working in end of life care and education for over 25 years, I also know that demystifying the actual process of dying has made a huge difference in how many face dying. Even those who told me they were stock-piling pills ultimately did not take them if they still had the dignity of loving care, choices, reflection, etc. Having experienced the impact of 10 suicides of family and friends myself, I am acutely aware that I cannot tell anyone how to view their choices, but can only offer compassionate presence, education and support. So thanks again for a great article to get people thinking and feeling.

    Reply
    • Stan Goldberg

      Hi Tami,

      Thanks for your kind words. I’m sure people would appreciate knowing how they can view your film. Feel free to post it here. And I agree with you: being involved with someone’s death, either on the journey or at the moment of death has always been transforming to me. During my first year of doing hospice volunteering eight years ago, my wife kept wondering who I would be when I came home from my shift at the Guest House of Zen Hospice. The lessons were that profound then–and they still are.

      Take Care,
      Stan

      Reply
  12. Kathy Frederick

    Wonderful article! As Memorial Day approaches, I anticipate visiting my father’s grave with my 88 year old mother. I remember watching his physical approach to death without any personality change. Then one day when I visited, he looked outward instead of inward in his conversation and I knew that he was really ready to make his last journey. I wish he could have died at home instead of a hospital. He made his journey without assistance. I also watched my father-in-law approach his end while he dealt with increasing dementia. Some days were more lucid than others. On those days, he would say he just wanted to go but he couldn’t take his own life. He said, “I can’t do that to my son and you”. When he asked how long it would be, I spoke of “waiting for the train, but not knowing the schedule”. Neither of us were/are religious. When he was in an Alzheimer’s unit, the train finally came. Now I watch my mother and believe that her religious principles will guide her and help us carry out her wishes. Living in Oregon, the rest of my family and I have the right to make our own choices, but only to a degree. You are right, mental pain can be every bit as agonizing as physical.
    Thank you again and keep on publishing!

    Reply
    • Stan Goldberg

      Hi Kathy,

      Thanks for your kind words. Your comments point up the complexities involved in any end of life discussion. I’ve found that those who have real world knowledge, such as you, look at important decisions with a very different eye than those who approach it theoretically.

      Take Care,
      Stan

      Reply
  13. Joanna Biggar

    This is most perceptive and thought-provoking essay. As a journalist a number of years ago, I was sent on assignment to Oregon and Washington to investigate and write about the “Right to Die” movement. The stories I covered were not only heart-breaking but persuasive. I came away from my own pieces convinced that assisted suicide should be allowed.
    A few months later, I was given another assignment, one about disabled activists under the rubric of “Not Dead Yet,” who were as passionately convinced that assisted suicide is a slippery slope to state-sanctioned “Dr. Deaths” and should never be allowed. Their stories, and their reasoning, were equally compelling and persuasive.
    I finally concluded that there is no right or wrong solution to this that will work for everybody. You are completely correct to say that the person in the circumstance must make the best decision for him/herself in the moment. Thank you for putting this so eloquently.
    Joanna Biggar

    Reply
    • Stan Goldberg

      Hi Joanna,

      Isn’t it amazing how when you understand two different perspectives, you’re able to develop one that incorporates both and is still reasonable? Before being involved in the hospice community, I worked with disabled children and adults for 30 years. While I don’t think the right to die proponents for end of life patients would want to extend their beliefs to the disability community, I know that community’s perception of being the “other” by able-body folks is justified.Thanks for your kind words.

      Take Care,
      Stan

      Reply
  14. Lizzymiles

    Interesting article, although I am not sure I wholeheartedly agree. My views on euthanasia have changed drastically over the years. When i was in high school, and competing in speech contests, everything was theoretical. I was a big proponent of active euthansia, right to die etc. Now that I have been bedside for more than a few deaths, I have reeled in my advocacy. I still believe in the patient’s right to remove equipment and refuse food, no doubt. However, I have seen so many patients with anxiety about dying who wanted to hurry it along only to find that there was some reason they lived as long as they did. I agree that we don’t know how the patient is feeling, however, it seems that the patient doesnt always see the big picture of how their life affects others and a loved one may need those extra days to process. I believe there is a spiritual component to the timing of things that is bigger than the individual.

    Reply
    • Stan Goldberg

      Hi Lizzy,
      I think your questionning of whether you agree with the acceptance of euthanasia is healthy. I’ve found when caregivers who don’t believe in euthanasia are at least willing to listen to a person who requests the right to die, their motivations for the request are understand. It often leads to addressing the psychological issues that led to the request, such as feeling unforgiven. Closure on these important issues wouldn’t have been possible if a caregiver refused to even discuss the possibility.

      Reply
  15. Maree Doden

    Hi Stan,
    What a great response (But are you dying?)to ask anyone who believes the right to die is wrong. I have a Buddhist quote over my desk that says “Put yourself in the place of others”. That is not easy to do but the concept should always be remembered: no one can judge, make decisions for or speak on behalf of someone who is in a place of intense pain or suffering UNLESS they are there themselves.
    Thank you for the great article!

    Reply
    • Stan Goldberg

      Hi Maree,

      Thanks for your kind words. Fortunately, I’m not dying, at least not in the immediate future. I think the question of “Are you dying?” becomes appropriate when someone opposes the right to die. In my experience, the question isn’t necessary for anyone who has been with someone near the end of their life who was in excruciating physical or psychological pain. Supporting and witnessing that event trumps any theoretical view of what’s ethically and morally right.

      Take Care,
      Stan

      Reply
  16. Linda McLean

    Beautiful article, and leaves me space to disagree.
    Having witnessed many deaths – some good, some bad – I was astounded when one ordinary evening in front of the TV,my father in law asked me if I would help make his wishes come true.
    “Well, tell me your wishes, and I’ll see what I can do.” I offered.
    So he told me, that with his cancer in its advanced stage, he did not fear death. He asked that he be allowed to die in my home, where he was comfortable. He asked to be allowed to die with dignity. He asked that I refuse any further treatment; and he asked that I would call time when I felt it was right.
    I asked him if he was very sure that this was what he wanted – that he was placing a huge degree if trust in me.
    “You won’t get it wrong. lass. I’ve watched you with other family members. I know that you can do this.”
    I like to think that I managed to perform to his standards when the time came. It was a responsibility – but he had been so clear, that there was really no argument.I think a good Nurse bears in mind Virginia Henderson’s philosophy.

    “The unique function of the nurse is to assist the individual, sick or well, in the performance of those activities contributing to health or its recovery (or to peaceful death) that he would perform unaided if he had the necessary strength, will or knowledge. And to do this in such a way as to help him gain independence as rapidly as possible.”
    I think it is a great pity that her philosophy is not used more widely, as it used to be many years ago when I was training.

    Reply
  17. Joanne Lovett

    Hi Stan,

    I found your article above very thought provoking. I watched my grand father terminally ill with cancer for 13 years and as a 13 year old I remember at school doing a talk on euthanasia. Back then many years ago I did not know much about ethics or values. And I thought everything was black and white. My grand dad spent 13 years telling us all he would be gone soon. We watched him in terrible pain and yet my nana took care of him and so did the medical staff. Later my nana 17 years later had cancer but never told any of us until near the last few weeks of her life. She did not want any pain killers and used prayer to help her through. A week before she passed over the doctors told her that they’d need to remove her leg and she replied no you won’t as I won’t be needing it. When she passed she asked that only my mum (her daughter) be present. My mum said it was the most difficult time and my nana asked that she did not call a doctor. Yet, my mum told her that mum had to legally and so mum did so yet nana had an emerage and passed over. Mum loved her mum dearly and so did the rest of us, there was times when nana didn’t want others help apart from mum’s and didn’t want a telephone installed, however, I told her this is not for you but for mum because if you are hurt mum does not want you left for a long time without any care or love. Nana listened and had the telephone. Nana recently contacted me and was with me through some very trying times in my life, where the death of a career I had worked so hard in ended. This has shown me that we experience death many times in our earth life but we don’t see it. Most recently my daughter’s dad has let go of a home she visited very frequently and has many memories of and she has found it very upsetting and said its like a part of my life is dying. I think much as with life its all very personal the experience and transformative. And so painful at times just like life. Maybe if we recognised that pain is something that we experience at birth also, with childbirth and I am sure the baby feels pain to. As a 37 year old I see that life is much a personal experience and much more greyer than any 13 year old could comprehend and for that I am grateful.

    Reply
    • Stan Goldberg

      Hi Joanne,

      Thanks for your kind words. I think your observations about how we encounter death constantly in living and don’t take it to heart are profound. It seems that we get to only “know” something when we experience it. And your experiences with family members have placed you at the enviable spot of having “knowledge” rather than just “information.”

      Take Care,
      Stan

      Reply
  18. Mary Hamilton

    Thank you once again, Stan, for your hard work and dedication. Your insight definitely gives us great ‘food for thought’ and great comfort knowing we don’t have to stand alone with our feelings. Isn’t the desired end result closure? And closure is so vastly different for each individual, depending upon how we have lived our lives and our core beliefs, and of course, the intensity of our pain and pain tolerance. Bedside manner is not high on the cirriculum of most med schools, and you are right; many have not been trained to listen. The two go hand in hand, in my opinion. Either you have it or you don’t. But I question that there can ever be enough people who clothe patients with compassion in this world. Thank God we have those who do and will. You’re very special!

    Reply
    • Stan Goldberg

      Thanks Mary for your kind words. I realize that educating the public about caregiving and aging issues is an ongoing process, with (unfortunately, no endpoint in sight).

      Reply
  19. Jen Bajackson

    Stan, my husband and I just recently had this conversation – okay, maybe it was me expressing my views as we waited for the vet to come help us with our aging GSD. I stated, trying to fill the loud silence as we sat in the front yard with our dog, that I find something wrong that humans that believe they are so advanced, can contemplate euthanasia for animals but cannot for humans. We don’t want our pets to suffer, but it’s okay for Uncle So and So, etc. There seems to be a rather large conflict in the concept.

    I thank you for a very well expressed discussion on the subject. There is value in all things, and that includes death.

    Reply
    • Stan Goldberg

      Thanks Jen for your kind words. As long as we look at death as something apart from living, the fear we have will prevent even the mildest discussions of the right to die.

      Take Care,
      Stan

      Reply
  20. Jared Hughes

    Dear Dr. Goldberg,

    Thank you for this thoughtful and choice-affirming essay on end-of-life choice and personal bodily autonomy. I am glad to read that you seem to be an advocate for patient-centered end-of-life care where the patient gets to choose the time and manner of their own death that is actively happening to them either contemporaneously or extemporaneously. However, the debate in the country is not over euthanasia – though our anti-choice opponents who number about 20% of the public – would have us all think so. It is actually over Aid in Dying.

    I encourage us all to consider ones vocabulary used to describe what your first hospice patient was asking you to do more carefully. While he was asking the impossible (to resort to violent means to end his suffering with a gun) of you, why was he not then offered palliative sedation or VSED as an alternative and legal option since he was begging to end his untenable suffering and invoking the California Right to Know Law.

    As a Californian and EOLC expert, I am sure you know that the Palliative Care Information Act which we passed some years ago now requires that patients who make such requests of their health providers and ask what their options are, are told about the full range of palliative care and treatment options they have at the end of life – including VSED and Palliative Sedation along with a host of treatments / interventions they can opt to discontinue (IE: pacemakers, antibiotics, heart medications, dialysis, etc) that are prolonging what would otherwise be a natural dying process. In fact, we are suing Vitas Hospice for breaking that law resulting in gross – I would personally say criminal – negligence and elder abuse.

    You can read more about that case here:
    http://www.compassionandchoices.org/what-we-do/in-the-courts/hargett-v-vitas/

    None of these end of life / standard of care options are anything remotely defined as euthanasia – nor are they considered “assisted suicide.” We’ve issued a FAQ that is helpful in making these distinctions clear and is gaining traction in the media who are correcting pejorative and gross factual errors contained in headlines and articles.

    http://www.compassionandchoices.org/userfiles/FINAL-fact-sheet-Why-AID-DWD-are-NOT-Assisted-Suicide-10.11.13.pdf

    As the public and policymakers discuss end-of-life options, it is critical to describe accurately the medical option of terminally ill people self-administering prescribed medicine to shorten a dying process they find unbearable. “Aid in dying” is the most neutral term to describe what advocates call “death with dignity” and opponents call “assisted suicide and / or euthanasia.

    Thank you for your help in making sure our language is at least value neutral and in line with many nationally recognized medical associations’ – most notably the Nation’s oldest and largest public health association has affirmed since 2006. It states that “the term ‘suicide’ or ‘assisted suicide’ is inappropriate when discussing the choice of a mentally competent terminally ill patient to seek medications that he or she could consume to bring about a peaceful and dignified death.”

    The APHA policy emphasizes “the importance to public health of using accurate language.” In 2008, the APHA adopted a policy supporting aid in dying. The policy acknowledges “allowing a mentally competent, terminally ill adult to obtain a prescription for medication that the person could self-administer to control the time, place, and manner of his or her impending death, where safeguards equivalent to those in the Oregon DDA are in place.”

    Reply
    • Stan Goldberg

      Hi Jarad,

      Thank you for your kind words about the article and the valuable information. And you are right, I am an advocate for people determining when and how they will die; whether it’s in a hospice/medical facility, at home, or standing on the edge of a building feeling there is no hope.

      I also agree that hospice facilities should provide patients with the full-range of options, including terminal sedation. However, before being too harsh on organizations that feel uncomfortable with terminal sedation, I think it’s important to look at context. When my first hospice patient asked me to shoot him 10 years ago, the notion of “hospice,” was still very frightening to the majority of US citizens. I believe it’s now only frightening. I knew my patient wasn’t literally asking me to shoot him, but wanted me to assist him in ending his life.The gut wrenching reaction people had to reading the article or the section in Learning Into Sharp Points had nothing to do with the words I used. It was about choosing to die, no matter how it was described or what it was called.

      As someone who was new to the hospice movement in 2003, I had no idea that terminal sedation was a possibility. And even five years ago it wasn’t something that I heard about in three of the four hospice organizations where I was a beside volunteer. Earlier, I mentioned “context.” I think it needs to be considered in two ways.

      The first is the larger context of society’s fear of hospice. People are still afraid of making a decision for themselves and family members to do nothing other than palliative care (a concept most people don’t understand), despite knowing that the end of theirs or their loved one’s life is imminent. Japan, South Korea, and Taiwan (countries where I’ve lectured) are still years behind us. Written descriptions of the hospice movement in Canada and the UK indicate that their population’s acceptance of hospice is greater than in the US. But the statistics on the number of people in hospice and their average stay are no better than the US. I know the worldwide interest in hospice is growing, if for no other reason than the sale of foreign language rights to my book in mainland China, Taiwan, Brazil and Indonesia.

      I believe many hospice organizations are painfully aware that they are caught up a continual PR campaign about end of life issues. One small misstep can not only damage their own precarious financial position, but the hospice movement in general. For example Senator Grassly’s and Sarah Palin’s deceptive reference to death panels set the hospice movement back years.

      The second context is a more personal one–that which surrounds the patient. I know hospice organizations weigh the importance of when to talk about terminal sedation. Would it be of benefit to the patient to discuss it at the beginning of service, or when it becomes-in their minds-an appropriate option? I’ve been involved with two patients who were given the option of terminal sedation and took it. It was an incredibly difficult decision for one patient who was in excruciating pain from breast cancer despite the best palliative care, and a quick and easy decision for a 45-year-old man just beginning to lose functioning with ALS.

      I apologize if you found my words inaccurate or misleading. I’ve never been good at choosing politically correct words. Not now, nor during my thirty-five years of serving children and adults with disabilities, caregivers, or people facing their own deaths. My experience suggests that while using the correct words to describe something is laudable, it has less influence on behaviors than changes in people’s hearts. I’ve always thought the choice of words has minimal effect on how people think about something they are afraid of or don’t want to understand. Changing “handicapped,” to “disabled,” to “challenged,” hasn’t resulted in better living conditions for those identified by these labels. Relentless pressure from social activists made the difference. While “living with dementia,” is more accurate then “an Alzheimer’s victim,” it hasn’t changed the social isolation anyone with a cognitive disability faces. Whether you call the right to have health care “Obamacare,” or “The Affordable Care Act,” almost 4 million people in Texas are still without insurance. In the 1960’s, it didn’t make a difference to people in Alabama if I was referred to as “a freedom rider,” or “northern agitator.” It was their fear of change that made labels irrelevant.

      But I will try to be more cognizant of using “aid in dying,” rather than “euthanasia,” or “assisted suicide.” I don’t think using the correct words will make as much difference as the important and valiant efforts of organizations like Compassion and Choices. If there’s anything my 10 years of beside hospice service to more than 500 patients has taught me, is that context is critical for understanding differences in lifestyles and decisions. And actions are more important for changing societal norms than words.

      Take care and keep up the fight,
      Stan

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