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.