Jeff Spiess is the author of the new book Dying with Ease: A Compassionate Guide for Making Wiser End-of-Life Decisions. A physician who has focused on oncology and on hospice care, he lives in Ohio.
Q: Why did you decide to write Dying with Ease?
A: During decades of working with patients and families, it became clear to me that one reason people suffer needlessly near the end of life is because of the hesitancy, even avoidance, to honestly encounter their own mortality. We all know that everyone will die, but fewer of us apply that knowledge to ourselves, especially in the realms of our emotions and our innermost beings.
Dying patients taught me that honestly encountering our own death not only enables a more peaceful ending, but also a more authentic living. Many patients told me that learning how to die taught them how to live, and that they regretted not coming to this realization earlier.
Dying with Ease is my attempt to bring this wisdom to thoughtful readers brave enough to risk their vulnerability to discover deeper meaning and eventually reach their dying with less struggle and suffering.
Q: You write, "What I hope to do for the reader of this volume is to personalize these abstractions [about death], to map this foreign territory, to render it both more familiar and less frightening." What are some of the ways in which you approach the idea of death with your patients and their families?
A: Talking with patients and families about dying requires both empathy and honesty. The empathic approach of listening and discerning allows me to understand better who these people are and how I can help them articulate their fears as well as their hopes, and allows them to feel that their pain is being shared, that they are being supported in their distress.
One of the most useful questions I ask families is, “So, tell me about your mom…” This often causes confusion: didn’t I look at the chart? Do I need more medical details? But when they realize that I am asking about a human being, not about a case, then the tears can flow and the vital issues arise and can be addressed.
A huge part of that distress occurs because so many of them simply do not realize the facts of the situation. Well-meaning doctors and other health care professionals unwittingly contribute to that distress because they use euphemisms that can be misconstrued rather than plain language that communicates reality.
People can handle bad news. I told many a medical student, “If you say they will get better and they die, you get lawsuits; if you tell them they will die and they recover, you get cookies.”
Q: During this time of pandemic, what advice would you give people dealing with Covid and its more serious effects?
A: In many ways, the issues raised by COVID-19 are the same as for any other serious or life-threatening illness: honestly facing and understanding the facts, recognizing that none of us is totally protected from risk and that death is a real possibility, and making choices and plans consistent with our personal values.
But the pandemic creates two gigantic wrinkles in considering our choices for care; the first is that if we require hospitalization for COVID, we will be alone. Visitors to all health care institutions are severely limited; most allow slight loosening of the restrictions when the patient is very near death, but the tradition of the family gathering near a loved one suffering or dying in a hospital bed just cannot happen now.
On the other hand, staying at home or returning there for recovery or to live out the end of life will require others to provide care for us. Traditionally this is largely done by family members, but each person entering the home places themselves at risk of illness, even death.
Thankfully, only a minority of those infected with the novel coronavirus gets sick enough that these issues become relevant, but experience has shown that it can happen to anyone. I strongly recommend that we all think about these issues for ourselves and for those we might be called on to assist in decision-making or even in care, especially for elderly or infirm relatives.
Q: In the book, you describe the concept of a "good death." How would you define that?
A: When we talk about a “good death” we really are referring to a positive experience during the last segment of living. The catchphrase “dying with dignity” gets at this if we unpack it a bit. A “good dying” can be temporally as short as a few minutes or as long as several months; the characteristics are the same.
A dignified ending is one in which the dying one is able to live that time with integrity, consistent with their deepest selves. This must include relief of pain and other symptoms, of course; it is difficult to hold a meaningful conversation while you are retching into an emesis basin. It must include excellent care of the dying body; none of us wants our final hours to be spent sitting in a dirty diaper.
The primary characteristic of dignity for many is the ability to leave some kind of legacy, to communicate something of who one is, to make a difference in the lives of those who survive or even those not yet born.
Sometimes this is holding of a hand of a person we have wronged or one we need to forgive. Sometimes this is one last, “I love you.” Sometimes it is planning a memorial service. Sometimes it is a set of letters or videos for grandchildren.
The essence of a dignified dying is somehow coming to the understanding that we have lived well, we have made a difference, that the little piece of the world we touched is a better place because we were in it.
Q: What are you working on now?
A: So much of the distress encountered by people nearing the end of their lives occurs in the realm of the spirit, the essential, the deeper being, the transcendent level. I am working on exploring, from my medical observer standpoint, the pain and the healing that occur at the intersection of spirituality and the end of life. Hopefully this develops into a second book, as it is a fascinating study.
Q: Anything else we should know?
A: Many of my most profound inspirations come from walking our adopted mixed terrier, Rico. I’m not sure if it is time spent on a simple task that allows my brain to process or if it is seeing the joy he finds in the simple world of smelling pee, hunting chipmunks, and being in the present moment.
--Interview with Deborah Kalb