Downtown Presbyterian Church Forum, 5/1/2016
(Rev. Dr. Pat Youngdahl & David Lee, MD)
May 1, 2016
A physician and a pastor open a conversation about spiritual questions facing patients and families at life’s end. In the presence of uncertainty, suffering, loss and leaving, one will need the amazing supports of sharing, connecting, loving, and living one’s faith. Now is not too soon to start.
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This topic today is a pretty big topic, and I will not provide any final answers, only observations from my life in medicine. I will briefly review what I believe I have learned. Then we will have plenty of time for questions and discussion.
My background is hybrid: my parents came to the US after WWII from China, not intending to stay. I grew up in a household with both Confucian and Christian ethics. I was encouraged to excel in academics, and went to Ivy League schools. I finished Pulmonary and Critical Care training at Strong Memorial in 1986, and have been at Rochester General since 1990. I have worked long hours in medicine, and have the respect of my peers I believe. I also chaired the ethics committee there for many years, and in 2012 I received certification in palliative care. I watched medicine evolve in ways that made me unhappy. Because of “burn out” and questioning, I arranged for myself to take a sabbatical at the Union Theological Seminary in NYC in 2013.
I was puzzled by the observation that for some patients having religious beliefs was not necessary to avoid suffering at the end of life, and for others having religion was not sufficient, not enough to allow for a peaceful death. There was something else besides religious practices that could provide comfort. And I was also interested in learning more about what it meant to “suffer”: how is suffering recognized, discussed, responded to?
It is not my purpose to describe what my courses taught me, though it was an incredible experience. I was introduced to Zen Buddhism, meditation practices, attachment theory in child development, the Jewish philosopher/rabbi/activist/mystic Abraham Joshua Heschel, and a study of St. Paul, among other experiences. When I returned to Rochester, I wanted to limit my medical time in order not to lose the enriching effects of my sabbatical. Very gradually, I have found ways to describe my combination of experiences and interests. This forum is one of those ways. As one of my mentors recently said, this is not a matter of proving a point, but of sharing my beliefs.
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I want to take my observations from my life in medicine to remind us of three things:
- First, the end of life, as all of life, presents uncertainties: we cannot know ahead of time how it will be. Which means we cannot manage and control things as much as we’d like. How do we deal with uncertainty?
- Second, aging and illness will include suffering and multiple losses: not just the losses of physical function and comfort, but also the pain of loneliness, and especially the pain of leaving and separating. There is also the risk of losing a sense of meaning, yet another sort of suffering. How do we approach suffering?
- Finally, there is the miracle of connection: connecting to ourselves, and to each other through the sharing of loves and pains. Through sharing, love grows, and pain shrinks. What have we attached to that will console us when it comes time to leave?
Pat and I were asked to comment on how to help patients and families face the end of life. I think as we explore that, we will also see that it builds backwards – from acknowledging that there will be an end to life, we learn to deal with the losses that accompany aging and illness. But more importantly, those insights and experiences remind us how to live in health.
Maya Angelou quotes an early Roman playwright Terance: “I am human; so nothing human is foreign to me.” One of my touchstones is that we are connected through our ability to experience suffering. Our wish to try to relieve it (compassion) provides us with a great tool, the gift of empathy and companionship. We can help even when we are empty-handed. It is one of the ways that we remain human – to want to help. I do not have any conclusions on how to deal with one’s own end of life. I will instead leave you with many questions. It is the questions, I believe, that are important to keep in mind as we continue to build awareness of these issues.
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First let’s consider the presence of uncertainty.
A first requirement for having a useful and comforting spirituality is that one needs to be aware of the inevitability of one’s own death, of our transience. We tend to imagine our lives as predictable, and manageable because of that predictability. Accidents, illness and death, though, force on us the awareness that what we accumulate, we cannot keep. Illness, aging and death are not options, they cannot be put off indefinitely. They are not things medicine can fix. Someone will wrap our bodies someday.
For a group like this, that awareness is nothing new. For better and for worse, even with the ultimate certainty, there will also be daily uncertainty. We don’t know what tomorrow will bring, or how many tomorrows there will be. With chronic and terminal illnesses, things can look terrible, then something good can happen. And the opposite is true: just when things get better, they can look worse again. The future no longer can be seen as clear or given. How to deal with that uncertainty is one of many questions facing patients diagnosed with life-threatening illness.
The culture at large bombards us with assumptions about Getting: things need to be bigger, better, and more, now and in the future. It is one of my frustrations in health care that we continue with that attitude, and do not acknowledge that most obvious characteristic of illnesses: we are dealing with loss and decline. So as a result, we do not practice well how to deal with uncertainty.
There will be days when it seems possible to beat the disease or at least to prolong it. And there will days when one feels like one is only dying in bits and pieces. So, in the face of uncertainty, these are questions you can pose: How do you deal with uncertainty – try harder, and do your best? But, what future are you trying to avoid? What do you wish to accomplish by finding more time? Will you see each day of illness as something that you could be robbed of, or something gifted to you already? Do we see a lifetime as an accumulation of accidents, or something that you create? Do you approach the unmanageability of life in general as a battle or as a romance?
I think we can see that these questions don’t only apply for the ends of our lives, but also what attitudes we use in our day-to-day “healthy” lives.
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Next let’s consider the issues of suffering and loss.
Life contains suffering – it is an empirical observation. It is delusional to imagine that suffering will be someone else’s lot, and never one’s own.
Suffering in illness occurs when we feel damaged, “un-whole.” How much suffering accompanies loss depends on whether other aspects of selfhood are adequate to sustain us. So I might be able to tolerate an amputation or a colostomy, if I had adequate connection to my friends, my work, my books, whatever. We always need Something Else to support us when we mourn a loss. For many, family and friends provide the supports to lean on. Remember though, that not everyone has those supports, and still manage – so these “anomalies” hint at additional sources of strength and support.
For better and for worse, I am resigned that illness and death will not be banished from the most perfect of worlds. Suffering is one of the experiences that unite us, perhaps the most important experience that unites us. It is harsh to say to someone facing a terminal illness – “What did you expect, not to suffer?” But we can challenge ourselves while still in health to begin to consider that difficult question.
The relief of physical suffering is the job of effective medical care, a task that is necessary always and sometimes very difficult. Unfortunately, physical discomfort is not the only source of suffering. All of the challenges created by psychological and social traumas contribute to suffering also, and there are no easy answers or external powers to alleviate all of that.
“I am human; nothing human is foreign to me.” Suffering is universal, and perhaps that realization can help to ease feelings of being especially unfortunate when it is our turn.
Two other important kinds of suffering can await patients and families: the pain of leaving, and the pain of losing one’s sense of meaning. The leaving behind of loved ones hurts, terribly. It is remarkable how powerful the wish can be for more time together. I believe it is the pain and fear of being left alone – sometimes for the patient, sometimes for the family. There are no easy solutions to this phenomenon. I hope it is true that leaving loved ones behind can be made bearable by realizing that our going on is never quite alone: if we have done well enough, we take pieces, big pieces, of others with us.
The loss of a sense of meaning can also be tragic. When faced with illness, the question of “Why me?” is universal. Issues of meaning and connectedness may not arise while we are in health. But one’s faith and beliefs will be tested once challenged by illness, aging or impending loss. I bring up these issues because it seems we spend too much energy, time and resources avoiding this most basic of questions: why was I put here? As we have said already, the endings of life can remind us how to live life. My answer, in general, is that we need to be aware of our transience and of our connectedness.
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Lastly, we turn to discuss what it might mean to develop our spiritual resources.
Courage, grace under pressure, generosity of spirit are spiritual qualities that we admire when we see them in patients. We wonder how it can be possible under the physical and psychic stresses that patients endure and even prevail. I suspect that they are traits that were practiced during health and life. If we wish to approach our endings not as a victim (“Why me?”), then now is the time to work on our abilities.
I want to share with this group what Heschel said in his great address No Religion is an Island: the great spiritual question facing modernity, he said, is “whether we are alive or dead to the challenge and the expectations of a living God,” because nihilism “is another ecumenical movement, worldwide in extent and influence.” With nihilism (a belief that nothing matters) life is an accident, a series of chances, beyond which there is no meaning. Thus we would be “free” to live our lives unconnected: you only live once, and thus you had better enjoy it while you can. Not only that, but given the multitude of religions, with their contradictory claims, it is too easy to say all religions are nonsense. It is a belief that scientific rationalism has encouraged – all things are knowable, and man can become some day be god-like in his knowledge.
I believe it is more complicated that that.
The Judeo-Christian tradition reminds us that God cares for the creation, and for humanity’s role in it: Israel was gifted to know, and by extension through Christ all of humanity is gifted to know, that God cares about our acts toward each other. The foundation of God’s caring is loving-kindness toward the uniqueness of each and every one of us. God says to each of us, “You matter to Me.” We are not random acts of nature.
But the God of Jews and Christians is too small a God if it does not also include the ideas of Islam, Hinduism, Buddhism, etc. Heschel said, any god that is your god but not mine has become an idol, a man-made thing. The Buddhists say that the conceptions are all like fingers pointing to the moon, and never the moon itself. The wonder of God has to be larger than any human conception.
In this context, I believe that the idea of salvation becomes much less important. More important is, salvation for what? How would or should the citizens of a Kingdom of God behave toward one another? How would the world look when the same, Holy Spirit imbued all of us?
I ask these questions, because they lead to better awareness of our connectedness, and connectedness provides both meaning and support. There can be an afterlife (or not); there can be reincarnation (or not); there can be oblivion and a return to Mother Earth (or not) – the task before us is not to know what happens after, but how to live connected now, as well as we can.
Buddhist philosophy provides a simple and effective image: that of a lotus and the mud out of which it originates. Both are one. The beauty of the lotus is fleeting, and the anonymity of the mud awaits it. But out of the mud again comes beauty, time after miraculous time. Transience and connectedness. We are part of that type of process.
Awareness of transience and connectedness is such an important key to approaching illness, decline and death. On the one hand, our identity, our Selfhood is the most valuable and sacred possession we have. We carry our particular world within us, unique as our fingerprint, not fully knowable to anyone else. Its extinction at some level is a kind of “unjustifiable violation.” On the other hand, our uniqueness is no different than anyone else’s. Our spark of God is no more (and no less) important than anyone else’s.
Let me conclude with more words from Heschel. In his last public talk he said, “remember that there is meaning beyond absurdity … be sure that every little deed counts, that every word has power, and that we do, everyone, our share to redeem the world, in spite of all absurdities, and all the frustrations, and all the disappointment. And above all, remember that the meaning of life is to live life as if it were a work of art.” There is more to life than self-interest and meeting needs. “What is saving your life today?” is a question we can remember, and try to answer daily with our actions, our thoughts, our words, and our prayers.
Thank you.
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BRIEF REFERENCES
1. Abraham Joshua Heschel. “No religion is an island” in Union Seminary Quarterly Review, 1966; 21:117-134.
https://utsnyc.edu/wp-content/uploads/Heschels-No-Religion-is-an-Island.pdf
2. Abraham Joshua Heschel interviewed by Carl Stern shortly before his death in 1972.
3. Eric J. Cassell. The nature of suffering and the goals of medicine. New England J Medicine, 1982; 306:639-645.