(This article, used with permission, was written by Andreas Laupacis, who founded Healthy Debate in 2011. He is currently the editor-in-chief of the Canadian Medical Association Journal.)
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.
Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
I agree with you about the term “good death” being problematic in that it puts undue pressure on those who are having a difficult death. It prolongs the pattern of being tossed back and forth between hope and fear – a dance that actually permeates our living as well. There are methods such as mindfulness meditation that address our seemingly perpetual rejection of what we don’t want and our clinging to what we do want. Somewhere between those two extremes there are methods that give people the practice of how to be with what is actually arising. But those methods are not taught in general in our lives. I’m curious about what you think we could call it instead. Some term that allows people to relax a bit in the midst of difficult transitions.
I thank Dr. Laupacis for suggesting that those of us in the Right-to-Die movement should be more careful with our use of the term “good death.” I needed this “heads up” alert.
In the article Dr. Laupacis asks the question, “So why are we talking so much about a good death?”
My short answer is because it is so useful. Let me explain.
I teach the importance and value of planning for the end of life. To do this, I first explain what a “bad death” is. I quote Dr. Jessica Zitter: “By the time the patient dies, he is encased in life support, arms tied down to prevent accidental dislodgement of tubes, unable to eat, talk, or escape—other than through death.” (Extreme Measures, p. 48.) She calls this the conveyor belt.
At the other extreme is a very good death. These are acknowledged by Dr. Lampacis when he says, “I know that a few people do die a good death.” He gives excellent examples.
In between these two extremes is a continuum. Where on this continuum is the line between a good death and a bad one? I suggest there isn’t one.
The reality is that the term “good death” is a relative one; it can be, and is, dependent upon various factors, such as when, where, and why it is used. I understand and appreciate Dr. Laupacis’ careful use of the term in his medical practice. I hope he understands my more liberal use in my attempt to goad people to pull their heads out of the sand and do some thinking about the end of their lives. In my view, neither one of us is wrong. Indeed we are both right – we use the term to fit out very different needs.
I don’t care for the term “good death.” How can the knowledge that you will never exist again be good in any way?
To be a peaceful or pain free death would be a better phrase. And if peaceful means drugged, so be it for those who want that. Others would opt for some pain to be able to say goodbye to loved ones.
Perhaps a good death is more about if you felt you lived a good life with some family or friends or a partner to relish. Or a feeling of a worthwhile career or community effort. Or just having truly enjoyed your life and all the things you did or saw or experienced, big and little.
I don’t believe one size fits all.
Speaking as a widow with no children and only a few older friends, I know I’m likely to die alone. My only wish would be that I had the ultimate choice as to when, not the doctors, the lawyers, and the religious establishments. It should be MY choice.
Thanks for a thoughtful essay. There are no data to draw on to answer the question of how many people have a good death for at least two reasons: 1. the dead can’t tell us about the quality of their deaths and 2. we can’t find a satisfactory definition that most people would accept. For the past thirty years, I have thought of a good death as one without suffering (both physical and psychological); one with one’s affairs in order; and one that we have come to terms with. All of the people whom I have encountered with both Hemlock and FEN during those thirty years seem to have accepted death as a part of one’s life. In addition, they don’t seem to be burdened by religious questions.
I am a retired nurse practitioner and have seen the whole spectrum. I think a good death is an “accepted death.” Simple, non denominational, non qualitative and it cues the perhaps non accepting family that the individual has accepted the process.
The challenge of reaching a common definition a “Good Death” is illustrated by the survey of 32 studies reported by the American Journal of Geriatric Psychiatry:
“For most people, the culmination of a good life is a “good death,” though what that means exactly is a matter of considerable consternation. Researchers at the University of California, San Diego School of Medicine surveyed published, English-language, peer-reviewed reports of qualitative and quantitative studies defining a “good death,” ultimately identifying 11 core themes associated with dying well.” The bottom line, according to the senior researcher is “Ask the patient.” See: https://today.ucsd.edu/story/successful_dying_researchers_define_the_elements_of_a_good_death