Dr. Jeff Spiess has spent his medical career with people facing serious illness and death, first as an oncologist, then as a hospice physician. He has lectured extensively and has been recognized as a leader in the field of end-of-life care. He has observed, through extensive clinical experience and innumerable conversations with the dying and those caring for and about them, the burden of unnecessary or avoidable suffering and distress engendered by the American tendency to avoid facing death as an inevitable personal reality. His medical practice and writing are informed by his interest in philosophy and theology, and he finds additional insights in depictions of dying in literature, including sacred texts, music, and popular culture. His writing provides information and inspiration, challenging readers to honestly encounter their own mortality to both die better and live more fully.
The one certainty in life is that it will end, yet it seems that here in America, more than any other country, death is a taboo subject. Doctors are loath to discuss. We spend, collectively, millions, likely billions, extending the last months of our lives because death is such an uncomfortable reality to face. Why? Why are Americans so scared to talk about this and why can’t we accept the inevitable?
Dr. Spiess: People have been frightened of dying ever since awareness of personal mortality developed in evolution; even before that, survival instinct was essential for the continuation of the species. For most of us through most of our lives, we exhibit our fear of death by avoiding the subject. As people learn that they are nearing death, these fears often coalesce in more specific concerns, like fear of pain, loss of function, incontinence, loneliness, what will happen to those left behind.
While Americans are not unique in our avoidance of facing death, we are certainly exceptional in that regard. I think part of this is the pioneer, “can do” spirit that imbues our national psyche. Part of the American myth is the idea of invincibility, that we can conquer anything, and anything beyond our control, like death, is a foreign concept.
That same spirit of autonomy also underpins the growing desire for end of life options like medical aid in dying. Fear of loss of control and of self-perceived dignity is a primary reason given by people who exercise this right in the locales in which is legal, and also a prime cause of frustration for those whose states do not allow the practice.
Why is there such reluctance of those in the medical field to discuss death realistically and truthfully with their patients?
Dr. Spiess: First, predicting the future is an inexact science at best, prognostication is tough. But the greatest hindrance to a realistic and truthful discussion about death throughout our culture is the fact that we are not comfortable with our own dying; in this, medical professionals are no different from anyone else. It has often been said that doctors are not realistic about the death of their patients because they see it as a professional or even personal failure. Fortunately, that attitude is fading.
A challenge in holding an honest meeting with a patient and family is the unpredictable emotional response. Some people weep, some get angry, some go silent, and it takes time for that to dissipate so that rational plans can be made, and time is just what the pressured physician does not have to give. In addition, many who are otherwise superb clinicians are just not wired to be able to deal with that emotional intensity. This is why it is far preferable for these discussions to happen in a non-threatening environment, like an office visit dedicated to advance care planning, rather than be put off until a crisis moment.
How does our avoidance of the topic of death make life harder?
Dr. Spiess: I think that if we each recognized, not just intellectually knew but deeply believed, that we are mortal, as is the other person we are interacting with, we would be less demanding and abusive and more collaborative and even kind. Would that this was so, not just in everyday living, but in business, religion, and politics.
We seem to have very mixed up and contradictory points of view on death. We have what seems to be a death cult in America and a revolt against science. People wholeheartedly buy into the anti-vaccine movement, even at the expense of their own lives or their children’s wellbeing. The rejection of safety precautions during a pandemic, which has led to many deaths. The refusal to do anything about the current climate emergency, which is killing people. We also have a heavily armed police force and civilians, both groups are very willing to use deadly force. Gun violence is scarily prevalent. Then there is medical professional doing everything they can to keep a dying patient alive in the last few months of their lives, and the family refusing to let go and say goodbye. Why do you think it’s like this?
Dr. Spiess: Wow, that is quite a list. Your “mixed up and contradictory” description is quite apt. Nearly every day, while reading the paper (yes, we still do that), my wife and I will note a description of incoherent logic with a “what in the world are they thinking?” or “what did you expect, after you just…?” If I have learned anything in working with people at the end of life, it is that the most important act in all human interaction is listening. So many of your illustrations result from people being certain that they know the truth and that there is no reason to listen to either expertise or other viewpoints.
Most organized religions and spiritual practices honor death as a natural part of a soul’s journey. Is there a way, even for people who don’t want to join any group or religion, to find meaning in death?
Dr. Spiess: The term “spirit” is etymologically related to words for “breath;” we inspire, expire, aspirate, etc. Finding meaning and peace in the spiritual realm, the essential inner life, is crucial for the dignified ending that we desire. Many people find this in religious practice, but for many more, religion, and especially dogma, gets in the way of healing. If there is meaning to be found in death, it must be in some way related to the meaning of the life that is drawing to a close. And, for most of us, any meaning in our lives is tied up in our relationships: with ourselves, with others, and with the ultimate. Over and over I have seen that meaning becomes apparent, that healing to occur, in the reconciliation of a fractured relationship, in creating an emotional and spiritual legacy, and even “aha” moments when people realize just what their life was all about.
Over twenty years ago, in his groundbreaking book, Dying Well, Dr. Ira Byock identified five tasks a dying person should complete before death; these were a list of things that needed to be said. They were: “Forgive me,” “I forgive you,” “Thank you,” “I love you,” and “Good-bye.” Communicating these simple but essential messages with those for whom they are needed, will go far in the search for both dignity and meaning in death.
Have you noticed people are more or less scared of dying these days?
Dr. Spiess: I doubt that there is an essential change in the collective dread of dying. If there has been any alteration in the United States, it is probably because of the availability of resources on death and dying and encouragement of open discussion. Unfortunately, only a minority of Americans take advantage of these opportunities.
Working in palliative care what, if any, more mystical, spiritual things have you learned?
Dr. Spiess: I attended a lecture once in which the speaker said, “Dying is not a problem to be solved, it is a mystery to be experienced.” Being present with the dying is a sacred privilege; death is the ultimate human event. Some people seem to experience something that nobody else in the room can perceive, this may appear to be welcome and reassuring, but occasionally it results in agitation. More often, though, nothing like that seems to happen. Even though there are common patterns in the way people die, the variation is nearly endless. I possess neither the insight nor the hubris to claim knowledge of what is happening in these situations, but they are clearly important and real to the one experiencing them and meaningful to loved ones in the room. More and more I have learned that my peace of mind is enhanced by allowing questions, paradox, and mystery to just be.
What has surprised you the most in this work?
Dr. Spiess: Its unpredictability. When faced with their dying, people become more genuine. They openly share the stories of their lives, and often do not have to hide the embarrassing episodes. People tend to die the way they lived, but even so, the surprises are frequent and often delightful.
Death cafés seem to pop up with greater frequency. It seems there’s a real interest in integrating death into our lives. What do you think about them and this movement?
Dr. Spiess: I have never attended a Death café, but I think the concept is tremendous. Because we all carry so much emotional baggage, especially in our family relationships, many of us are reluctant to speak honestly about our own dying with those same loved ones. The informal and celebratory (cake is strongly encouraged!) atmosphere of a Death café can allow a crack in that wall. So much of the difficulty of conversations around death and dying is just getting the talking started. Any structured prodding, whether Death café, The Conversation Project or a session sponsored by a local hospice or religious group, that ignites communication is of immense value.
Finally, any advice on how to lose one’s fear of death?
Dr. Spiess: As with any fear, the only way to lessen it (I doubt that many of us are able to totally “lose” our fear of death) is to honestly face it, confront why we are afraid. Overcoming an inhibiting fear of death involves much more than making estate plans and executing advance directives, though those are essential. Fear, sadness, and grief are normal reactions to dying, and I believe that encountering and experiencing some of those before the crisis of terminal illness occurs will allay some of the dread and provide a measure of confidence. This is the reason that in my book, Dying with Ease: A Compassionate Guide to Making Wiser End of Life Decisions, I included a guided exercise placing the reader in the role of a dying person. Any opportunity we have to, as the medieval monastics termed it, “live with” our mortality eliminates a bit of our fear and incrementally increases our freedom to live our lives with authenticity and joy.