Dying Well (Ira Byock)
OVERVIEW
What is a “good death?” Ira Byock, a physician, and longtime hospice director, finds most people answer this question with “one where the patient doesn’t suffer,” “where the patient isn’t in pain,” or “ where the patient doesn’t die alone.” While these are important considerations, the tone is one of absence – it doesn’t tell us what a good death is only what it isn’t. Byock prefers “dying well,” which he feels better captures the human experience of dying and carries a sense of living and process. In “Dying Well: Peace and Possibilities at the End of Life,” Byock explores what he considers the developmental “landmarks” and “taskwork” of dying well. His goal is not to address the medical aspects, but rather the personal and psychological considerations.
Some of these landmarks and taskwork of dying well include:
· Setting one’s financial and other affairs in order
· Telling one’s stories/sharing one’s memories
· Acknowledgment of self-worth and self-love
· Completion of relationships – forgiving, asking forgiveness, saying goodbye, saying I love you, and saying thank you. In short, reconciling relationships and leaving nothing unsaid or undone
· Feelings of personal growth – “the sense of renewed mastery in a changed life situation”
· Transcending the self – feeling that your death dissolves into some greater whole; a way to find comfort in chaos (far from being the sole province of religion, Byock notes that any contemplative practice or experience of expansiveness/interconnectedness is what we’re after).
While these guidelines help many patients, “dying well” is ultimately about whatever experience brings meaning and value to you. In addition to this valuable guidance, “Dying Well” includes insightful discussions about euthanasia, dignity, and community.
There is a perception among some that the decision to stop nourishment or fluids is tantamount to euthanasia. It is not. Removing tube feedings and fluids when illness is very advanced does not increase suffering, and it can actually contribute to a more comfortable dying process. “In deciding that a loved one will not be allowed to die of malnourishment, a family is making a tacit decision to let the person die of something else,” like infection, gastrointestinal hemorrhage, blood clot, stroke, or seizure. “Each complication that is treated merely shifts the physiology of the person’s dying, it does not halt it. A patient who is artificially fed and hydrated may live longer but is more likely to die with episodes of acute pain or breathlessness.” It’s been Byock’s experience that patients who stop tube feedings and fluids can even experience a mild euphoria before death, likely due to the change in their blood chemistry.
On dignity, Byock is unassailable in his position that dying is not inherently undignified. The majority of us will live out a decline that will be characterized by dependence and infirmity. But if dying is the most natural, the most human thing we can do, then nothing about needing assistance in dressing, or bathing, or relieving oneself, could be undignified.
Unfortunately, society reinforces the belief that the loss of normal capability and independence renders a person undignified. Our society reserves its highest accolades for youth, vigor, and self-control and accords them dignity, while their absence is thought to be undignified. The physical signs of disease or advanced age are considered personally degrading, and the body’s deterioration, rather than being regarded as an unavoidable human process, becomes a source of embarrassment… Dignity needs to be accorded the remarkable achievements in personal growth that can occur while someone is dying. The waning phase of a person’s life deserves to be a time of satisfaction and to stir feelings of self-esteem and self-worth.
I think it’s worth calling out how Byock’s views on dignity inform his position on euthanasia, which I take to be that it’s (sometimes, always?) the wrong answer to the right question. The right question being “how can we alleviate suffering in dying patients?” but the wrong answer because in most cases it’s the concern of being a burden or in being undignified that sways patients to this option. Byock, who believes fervently that there is nothing inherently undignified about infirmity or dependence, and who believes strongly in our hospice and palliative care sectors working harder to address the psychological and personal pain of dying, thinks we’re copping out of the real work necessary to support dying patients – that symptoms can always be managed (physical, emotional, and psychological), that we can positively redefine what it means to have dignity, and that dying can be a valuable part of your living. You can read an expansion of his position here.
Lastly, Byock encourages us to consider that caring for dying people is an important part of creating community. If you think of community as a verb more than a noun, something that’s created through interactions of caring and being cared for, then dying is the receiving end of caring for each other. We create community by supporting our dying and our vulnerable. We must take back this responsibility and imagine a more enlightened and loving way to be there for each other. We must understand the integral role this plays in building communities and enriching our living. Inherent in this is the need to redefine dignity and the value of living our dying.
WHAT NOW? (actions for mortal atheists)
Ask: “What would be left undone if I died today?” and “How can I live most fully in whatever time is left?”
Byock offers that these questions best illuminate the necessary tasks we must accomplish if we are to live and die well. There are many permutations of the “deathbed test,” but these are the two specific thoughts Byock finds most helpful in clarifying what matters to us and how best to avoid deathbed regrets.
Pursue a contemplative practice
A note on the last landmark bullet presented above, which is “transcending the self:” like Sam Harris, Byock favours meditation or other contemplative practices to find comfort among chaos, to encourage peace and well-being. If authenticity and self-reflection are inputs to our dying well, then cultivating introspection seems prudent.
IN SUM:
Is this book entirely secular? No.
If I had to describe the book in one sentence? The landmarks and taskwork of dying well, illustrated through the stories of real patients and families.
Who should read this book? Those interested in dying well.