A few weeks ago, on my way to see a patient in the hospital, I ran into a cardiologist who I like a lot. We have cared for a few patients together—people whose hearts had failed so severely that he didn’t have anything useful to offer them anymore, and they were transitioned to the palliative care unit, where I work, to die.
We commiserated, as doctors often do, about being on call. Then he told me that what I do is important. It is important that people have a good death.
I thought of two patients who had recently died on the unit and wondered if they would say they experienced a good death.
I doubt that the person who had died the night before, who had no friends or family with him, and who continued to have pain even though he was on large doses of narcotics, would have said his death was good. He would have said that we made his pain much, much better. He would have said that he felt the social worker and nurses and nursing assistants and cleaners and dietitian and spiritual care worker and physiotherapist and doctors genuinely cared about him, both spiritually and physically. He would have said he was comforted by that, and grateful. But I don’t think he would have said he had a good death.
I also don’t think the person who had died the week before, who we had heavily sedated because she became so agitated in her last hours, would have said her death was good. I think her partner would say that she died peacefully and he appreciated our care, but he missed being able to speak to her at the end. I don’t think that the first adjective he would use to describe her death would be “good.”
I know that a few people do die a good death. My 92-year-old mother who is still living on her own, has told me that she has lived a good and full life, and if she died during her sleep tonight, she would say she had a good death. Some people die with families and friends around them, and with no pain, shortness of breath or confusion; they are lucid almost to the very end, and appear to have accomplished everything they wanted to in life. Some very religious Christians say that because Christ suffered at the end, it is good that they suffer too. Some who opt for medical assistance in death would say they died a good death, on their own terms.
But for most people who die, and for their loved ones, death isn’t good. Death usually comes with some degree of sadness, fear, pain, confusion, incontinence and many other physical and psychological problems; often lots of them. Even with high-quality palliative care.
When I talk with patients and families I tell them that the palliative care team will focus like a laser on managing pain, shortness of breath and other symptoms around the time of death, and will support them psychologically as best we can. I tell them that we are usually quite successful at that, although I warn them that we aren’t perfect.
I don’t tell them they’ll have a good death.
People are talking about good death a lot these days—when I Google the term I get 1.5 million hits.
I may be an outlier, but the term “good death” bugs me.
I worry that the term makes people who die with pain or psychological distress think that it is partially their fault they aren’t dying a good death. They haven’t tried hard enough or aren’t tough enough. I worry that health care practitioners who have provided their best possible care will feel inadequate.
So why are we talking so much about a good death?
I wonder if some who feel MAID is immoral find it convenient to pretend that high-quality palliative care usually leads to a symptom-free and good death.
Maybe those who argue for MAID like to imply that it always happens with no personal or family strife, and minimize the fact that those who have MAID must have judged themselves to have had irremediable physical or psychological suffering before the procedure.
But I think that mostly we feel uncomfortable acknowledging that despite everyone’s best efforts, death is usually tough. For those who die and those who are left behind.
Even if most deaths aren’t good, they can still be profoundly moving, in a positive way. There can be lots of laughs with family and friends (and health care providers), despite pain and incontinence at the end.
David Giuliano, a United Church minister who has had a journey with cancer, says, “What happens when we are ill is sometimes so unbelievably beautiful. The tenderness that happens within families at that moment of suffering. That awareness of our humanity and our mortality that we keep at a distance most of the time. The kind of intimate, beautiful, sacred conversations that happen in those moments that we would never ever be open to at other times.”
Those of us who care for dying people gain a great deal from that experience as well. It makes us consider what is important in our own lives. And even though I would argue that most deaths aren’t good, we improve the quality of death of the vast majority of people we care for, often substantially. And there isn’t much that’s more satisfying than that.
It just doesn’t make the death good.
Some details about the two patients were changed to ensure confidentiality.
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I haven’t had a lot of contact with people who have died but I have had 3 people who had amazing and wonderful deaths. Since 3:00 in the morning today I’ve been reflecting on their virtues and how much I too want to be like them. Two of them were physically disabled and one of them was 104 at her death. All of them were courageous, determined, inspiring, generous, unconditionally and without any limitations, loving, gave far more than they took, humble, with a sense of humour, passionate, etc. and they took charge of their death just as they had done in their life. Their deaths brought everyone closer together and they gave only happiness and no sorrow. I am so fortunate to have known these souls. May I also die as they died. That is my good wish for myself. I feel that the moment of death is like shooting an arrow into a bull’s eye. It is your final and greatest moment and it should be a wonderful and meaningful moment that is all yours. The worst thing I could ever imagine is to have friends and family whispering in my ears different instructions do this, don’t do that, did you remember this one, I love you, I’m so sad for you. I would say please leave me alone. I forgive you all but go away and let me have this final moment, this one crowning moment in complete peace. Once they had all left I could focus my aim on the bull’s eye, then with no other influences I would pull the bow and let the arrow fly to God’s heart. This would be my final achievement of my whole life and this would be a very good death.
For my own death, I would much prefer to die alone than with family around. I want my full focus to be on God and my conversations with God, my Beloved. Other people would distract me and that would make me feel like I wasn’t having a good death. I am truly looking forward to having a good death. I don’t want anything pulling me away from God at the moment that my soul is about to leave this mortal coil. And I’ve told him that and he knows it too so I’m sure that I will have a very good death when that time comes. He’s my best buddy.
Hi.
I just was at a wonderful Memorial tribute for my dear friend Judith who died a very good death. I just can hardly find the words to explain how happy I am and what a wonderful death she had. I hope my death will be as perfect as hers was. She died last Wednesday evening from a heart attack in her apartment on her own. She had lost her legs in 2012 due to a disease. Judith’s personality just got better and better after she lost her legs. At her tribute there were 40 people on zoom. Everybody commented on Judith’s virtues and how she never even told anybody about the things she did. She was humble, courageous, enthusiastic, contented, generous, loving. Her brother said Judith never saw that she had any disability. He said some people talk about either seeing the glass half empty or half full. Judith said, what glass are you talking about. My friend Michelle went to visit her last week and she had just bought a new expensive wheelchair that could lift her up to the top kitchen cupboards to clean them. So she wasn’t having any thoughts of dying. Michelle said to her just in conversation. Judith have you forgiven everyone in your life. Judith said yes, I have. I’ve forgiven everyone and I’m really light. Her face looked like an angel and I’m not just saying that. She was very very happy. He sister shared at the funeral that she had asked her numerous times since the pandemic, don’t you want to come over and stay at our place. You must be lonely all by yourself. Judith said, Debra, I appreciate your offer but I’m really fine here. I don’t need to come and stay at your place. She was independent and self contained. And truly happy. On Saturday there was the funeral and Brian, her meditation teacher, had a wonderful experience in his meditation of her sitting in God’s lap with her legs gazing into God’s eyes. We were standing in front and God looked at us for a moment to signal to Judith that her friends had come. She looked very lovingly at all of us for a few seconds and smiled and then looked back at God, as if to say, I’m right where I want to be now. I’m safe. No need to worry about me. Brian asked where she would take rebirth and God said close by but no need for you to have any more thoughts about it. Then the vinyette closed into a circle just like in the bugs bunny movies where he says, that’s all folks. And then it closed right up. At the tribute there were her biological family as well as her meditation family. Everybody was so happy and so positive. Her sister said thank you so much to her meditation family because I can see that you guys really helped her to come close to God in the last 20 years and she was so happy and I thank you all for that.
So that is my story of a really really good death. I don’t think she experienced any pain. Her sister came over when she couldn’t get hold of her and found her dead. But you know the soul never dies and we all felt her presence at the funeral and the tribute to her life. Her love brought everyone together.
A good death is an ancient Greek idea, and it referred primarily to a death that comes in the midst of what one was in life. It would be a quick or sudden death, often in the midst of one’s work, dying in the traces. The tremendous powers of our medical technologies and their bureaucratic management and administration have generally extended the process of dying. Before the present century, people did not linger as they do now. Death was often sudden. Not always, of course, people with tuberculosis in the nineteeth-centruy often died by degrees, and their death-in-life was miserable, but in less materially advanced cultures, the sick seldom endured. People did not live as long as they do now, and they did not take so long to die. We have extended both life and dying, and it is a reasonable question whether we have improved either. A shorter life of greater physical challenge that ends abruptly when vitality declines may be prefereable to a life with few (or any) physical demands that can be prolonged by medical management and intervention. Our powers have consequences. The appearance of progress may be a mirage. The plowman who died at his work in his 50s, after a lifetime of labor, may have lived a life no more to be regretted than that of a cruise ship idler eating four meals a day who ends up in intensive care on life-support. We all die, and death can be a beneficient deliverance as well as loss. Better, perhaps, to die earlier and faster when our life begins to fail than live on only with the massive intervention and support of machines and technicians in hospital rooms and nursing homes.
Really like this article. I love the fact that you ‘think’. :) It is odd that we now have one more item on our ‘advancing into the future’ list. One more thing to think about, or worry about. It speaks of possibly having a choice, but is it really a choice. Even the ‘best’ death, whatever that looks like, has pain. It gets easier the older people are, since we have it in our heads that between 85 and 100, it is time. I think I’d like to simply vanish, with no one remembering I was here, so that I leave no pain behind, yet this is not a possibility. I think most people really don’t want to leave someone behind that is hurting or grieving too much. And that is where good care comes in, long before the death, care, affirmations and kind treatment by the medical community in case of illness and disease. There can be no good death if all patients have felt is coldness, disconnect or the emotional distancing from their body and mind of the patient. I truly believe we could say we had a good death if good care did not just come right at the end. And for a lot of people, they never experience it at all, not even at the end, save for one sensitive nurse. The bad death then leaves family or loved ones feeling that there was no closure. Palliative teams should not be the only ones concerned with the patient’s time on earth, it should be a medical effort. The narrative of the individual is at stake, if heeded and heard, the family is left to remember the death in a much better way.
I use the phrase “a good death” from time to time as well. This article certainly puts the phrase in perspective and I am persuaded it may be appropriate to consider other terms. Thanks for a thought-provoking piece.
Lovely article. I too don’t think the term “good” death is appropriate. For me, having attended several home deaths of natural causes, I prefer the term respectful death. However that may be for that person’s values and beleifs.
I so value your thoughtful and sensitive approach to this topic and concept. To quote psychologist Tony Walter in his book What Death Means Now: Thinking Critically About Dying and Grieving: “There was no golden age when every member of society faced death and loss with equanimity; nor will there be.” Having said that, when someone says to me their mother/father/whomever ‘had a good death’ I always want to learn more, toward sharing via my blog. It means something different for each of us. In most cases, it seems it’s what’s happened right up to death that’s made it a better ending- and felt as such by those left behind. New York Times columnist Paula Span wrote of her father’s most def not a good death: “90 good years. 4 bad days” While the current trend/encouragement to have conversations, and construct an Advance Directive, I wonder if there’s anything that can take away from, or soften the fact of a great gaping loss. Thank you again for sharing your thoughts
I would like to converse with you, what is the name of your blog, or email
Thank you for bringing more light to this sensitive matter.
I am moved and stimulated by many of the comments made to date. Thank you.
I briefly thought of responding to each of them directly, but decided that would make the comments section cluttered. So I am penning this overall response.
If I don’t like “good death” it is a fair question to ask what adjective I’d prefer.
On twitter, @celinafcarter pointed out that the definition of “good” doesn’t always mean pleasant or enjoyable – “suitable”, “honourable”, “conforming to a standard”, and “adequate” are all listed. However, I am not sure any of those work for me when describing what I want from my death.
Right now I think I like “meaningful”. I am moved when I see a dying person surrounded by family and friends, sometimes sharing things with each other that they’ve never shared before. As David Giuliano says, “having sacred conversations”. Conversations that benefit both the person who is dying and those who aren’t. Even if there is some pain and shortness of breath in the end, that would seem like a meaningful death to me.
I think the main reason I wrote the article is that I worry that when we talk about a “good death” in our society these days, we often make death seem unrealistically good, like Frank mentions in his second comment (Frank, you are allowed three).
Pat – I think lots of health care practitioners have the kinds of moral attitudes and values one wants. Unfortunately, the time pressures of much of medicine make these hard to express. I think I express them better now that I am working as a palliative care physician than when I worked as a general internist and felt like I was on a treadmill admitting and discharging patients as fast as I could.
Thanks again for all the comments. I’ll end by quoting Katie, talking about her brother’s death.
“Philosophy aside, I found nothing but the most lovely of human beings providing for his every healthcare need however this did not improve the end point. It did not make a good death. Being there for the demise, knowing that there were no other choices, did however make for the best of the worst journey.”
Thank you Andreas. It’s late at night and I am sitting with my beautiful Dad right now at Rockyview Hospital in Calgary. Your words were very comforting to me and my brothers. So true what you reflect on. The connections between Dad and Mom and all of us during this time have been tender and precious and yet it is also comforting to validate the surreal sad weirdness of the exquisite, profound emotions, both sadness and some hilarity. And the underlying fear that Dad might be scared. Anyway we are all here loving him and each other and muddling through. Thanks for your lovely words.
Susan
Wonderful & moving article Dr Laupacis.
Thank you for these hauntingly honest insights. At best death is the lesser of suffering evils. It’s rare today to see the reasons for acknowledging “death is not good” set out so clearly. It’s valueable. Thanks
I’m sorry if I’m breaking a rule by leaving two comments.
Since reading this I’ve been thinking of the very long history of the idea of “a good death.” It has certainly been often depicted in paintings and described in print for many centuries. It would be good to see how the idea–the ideal?–has changed over time and what the changes reflect, especially about our contemporary views about pain–how much we expect to experience, how close we see the relation between physical pain and mental anguish, how much our particular cultural environments and traditions affect or even determine how we experience and understand pain and how much of it we are willing to tolerate, etc.
When I taught in a community college one of the essays we used was one by Elisabeth Kubler-Ross in which she contrasted a very good death experienced by a man in Switzerland who had fallen off a tree and was able to say all he wanted to say to family and friends from his bed at home before permanently nodding off with a death of a supposedly typical hospital patient who is the hapless victim of an entirely impersonal and mechanized process. I always thought the contrast was far too neat, even dishonest, and likely to implant or reinforce an expectation that if only we have the right values and a bit of luck pretty much all of us could experience and indeed enjoy the Swiss farmer’s kind of death. Many movies and TV shows have conveyed a similar message, which can lead to terrible disappointment (at best) when death does not come as so depicted to a loved one–or to ourselves This piece, like Atul Gawande’s “Being Mortal,” injects some reality and, perhaps, some realistic hope into the mix.
Hello doctor Andreas. This is Chris Yen. I used to be on your Citizens’ Council. I want to say thank you for your work. I am visiting a neighbor of mine these days who is currently at St. Michael’s palliative care. I did not see this neighbor for some months and did not find out that he is at the hospital dying until I saw another neighbor last week. Now I try everyday to visit him on my way to work and to let him know that someone does care. I know from past conversations that he did not get along with his grown kids and they had pretty much disowned each other. Sad thing to die without patching things up! I agree that there is probably no good death but at least a peaceful death? My own father who was never sick died in his sleep. That was a peaceful death for my dad, the family was shocked, painfully sadden and we were lost. You have a good heart. I want to tell you that I appreciate what you do very much. Take care and may God bless and look after you. Thanks again doctor Andreas
I very much appreciated this perspective and agree that a “good death” is not an achievable event. Having the benefit of a year between reading this and my brother’s most untimely death (age 56) it was like a dose of sense ascribed to what was and continues to be a non-sensical event. After committing to 4 trips overseas to be next to him as his closest blood relative and to represent our elderly parents I can attest to watching nothing but suffering through his decline. His wish for an opportunity to expedite his passage following his acknowledgement of the one direction his life was taking was not possible as he lived in Italy. The opportunity with much advocacy was to secure a place in a Palliative care facility in Turin where the mission was to neither expedite nor delay inevitable death. Philosophy aside, I found nothing but the most lovely of human beings providing for his every healthcare need however this did not improve the end point. It did not make a good death. Being there for the demise, knowing that there were no other choices, did however make for the best of the worst journey. Our goal as humans and healthcare providers should be to allow for a safe, kind passage and encourage our loved ones to be part of the process as directed by the individual. I have no regrets about being with my brother through an ugly time and take solace in that he knew I too was there for the journey which was never and will never be viewed as a good death. Buen Camino.
Beautifully felt and said–no judgement,no suggestions.Awareness and appreciation is there to the best of our ability,always,I hope.
Nice piece Andreas; I have often thought about this particular subject off & on over the years. Don’t have much to offer other than thanks for putting pen-to-paper on this question.
This is a very interesting article. I am a health professional (registered nurse and registered psychologist). Perhaps “meaningful death” is another way to look at it or do we really even need to classify it? I remember taking part in a research study as a participant, about 5 years ago after my father died and completing a survey. There were questions about a “good death” and I kept saying to myself “these questions do not really capture the depth and significance of the experience” and somehow by answering questions with a predetermined response seemed to trivialize the deep and profound experience I and my family lived through.
Excellent thoughts and ideas, well thought out and personalized. Completely agree with you that the term “good death” is odd in many respects. I know for myself I do wish to die feeling connected to the universe in a personal and meaningful way. And I believe that will happen since I do feel as such now, while living. I don’t know how I’ll die, if I’ll be in pain or if will feel angry, sad etc. But I know I do want to feel connected as I say. Death just “is”, just like being just “is”. I do like this from Paul Tillich – “the courage to die is the test of the courage to be.” To me this means if you have had the courage to keep on living with whatever struggles and hardships come your way, then you will pas the test of having the courage to die with flying colours.
Dr Laupacis,
Thanks for this interesting opinion/debate starter. It has given me much to think about. I am a seasoned health care provider and a cancer patient. In the last year I have had many thoughts about my own potential death, which is not imminent. I have ideas about how I want my dying to be, which would lead to a “good” death by my definition. How else would you describe death? Do you have other descriptors that don’t bug you? I have not read anything specifically on this topic but I guess the dying person is the only real judge.
I’ve been wondering if people make dying plans like we made birth plans at another stage of our lives. I was always bugged because the maternity health care team always said, “Don’t count on things going like your birth plan”. Does that mean if I have a death plan I can’t count on it either?
Thoughtful and candid writing about a fearsome issue.
Being with people at the end of life, we can never know if indeed, it was “a good death”.
You can ensure in the end of life setting that caregivers have theoretical knowledge, practical skills and hopefully, the personal attitude of compassion and empathy to suffering.
Your article demonstates the critical importance of developing the moral attitude or values, including respect, thruthfulness and dignity in medical eduction.
Care for the dying helps physcians learn to tolerate a degree of intimacy and personal engagement that other aspects of medical training discourage.
Especially in the field of palliative care, the core attitude of authenticity, manifest in relationships, requires a high degree of perceptiveness to contriute to the expereince of a good death.
Thank you, Andreas. This is such an important topic.
After reading this I thought of the distinction Daniel Kahneman makes (in Thinking Fast and Slow) between the experiencing self and the remembering self. For those who are close to the person who has died–and maybe this also applies to the care-providing doctors, nurses, etc.–what is remembered and/or focused upon in relation to the death and the whole experience of dying will change over time, inevitably. This isn’t a matter of falsifying the experience but of seeing it from a different perspective. That’s why the goodness of a particular kindness will grow in significance–and why a particular cruelty or display of indifference will wound more deeply.