• Resisting callousness in healthcare

End of Life Matters – The Nature of Suffering

Downtown Presbyterian Church Forum, 1/21/2018

The ends of lives raise questions of transience and connectedness, and the character of our time together. How do we respond to the suffering within ourselves and within the Other?

Ill-health will challenge our explanations and connections to Something Else – will one’s spirituality provide comfort and support to face the sorrows that accompany illness, accident and aging? If suffering is universal (it is), then it must form part of our common humanity. The ends of lives raise spiritual questions – questions of transience and connectedness, and the character of our time together. How do we acknowledge and respond to the suffering within ourselves and within the Other?

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Last week we discussed how spirituality is a part, and an important part, of our personhood. There is a part of us that joins with others and struggles with questions and truths that are age-old, yet also are personal, current and urgent. I did not offer any one vision that could unite us, because there is not one same solution that works for all of us. Faulkner’s piece spotlighted the significance of qualities that enhance our relationships (“courage and honor and hope and pride and compassion and pity and sacrifice”), but each of us has to struggle with the meaning and application of these humane qualities, these spiritual strengths.

Last week I offered that we see and use different types of spirituality. One type of spirituality would be the attitude of Optimistic Resistance – of always working and hoping for a better day – fight on, never give up. We see that worldview after natural disasters or at football games, and we saw that spirituality after 9/11: the sense of shared community then provides awesome support and inspiration for its members.

On the other hand, I mentioned a spirituality of nihilism also: this type of explanation feels that events are random, free will is an illusion, and values are subjective or relative, and therefore without intrinsic meaning. This nihilistic approach is encouraged in part by advances in science and technology, and suggests that biological forces will someday explain and define our natures and choices. In such a world, terms such as Meaning and Connection would deny the “scientific” evidence that humans are merely sophisticated organisms culturally programmed to behave in certain ways. We might as well be living as monsters in our own Jurassic Park, with incredible powers but no social norms; or unconsciously in our own Matrix with parameters of behavior defined by someone else.

I have tried not to describe or suggest why or how one spirituality could work “better” than another. After all, if there are so many spiritualities possible, couldn’t one be just as good as another? Instead of answering that question directly, I propose leaping ahead to the time of illness and decline, and use that universal experience as a perspective to eventually look back at issues of meaning and connection – that is, spirituality.

This week I will wind our way from a concept (“suffering”) to stories and examples of experiences that have included suffering. We will do another Ignatian exercise – after which I will try to bite my tongue and let you speak to experiences that have challenged you, and the supports that have sustained you.

Next week, as you have heard, we will tackle the issue of medically-assisted suicide. But I believe that that discussion is enriched by discussing suffering and spirituality first.

Suffering …

I should attempt a definition. Last week I tried to define spirituality as “that part of our personhood that provides meaning, identity and connection in our lives”. For this week’s discussion, I will define suffering as Dr. Eric Cassell did. Suffering is “the state of distress associated with events that threaten the intactness of the person.” (repeat) Suffering is experienced by a person, when her or his integrity is threatened. Bill Smith touched on this formulation two weeks ago, when he endorsed the BPSM and PC approaches that value the humanity of the whole person. Suffering has everything to do with personhood and integrity, or its loss or dis-integration.

I was working this week in my office seeing patients I have followed for months or years. I had this talk in mind, too, and perhaps that is why this week I seemed to encounter more suffering than before.

My first clinical vignette is a patient I have known since 2010. She has severe COPD from her smoking, wears oxygen constantly and has complications of using chronic steroids. Her cardiac status is also compromised. She has not taken her water pills in the last several days, and in the last few weeks had started smoking again because it helped her anxiety.

In the last two weeks she also lost a best friend who was elderly, then her daughter had a miscarriage, her first child stillborn at 24 weeks. The death of a best friend was tough, she said, but it was after a good long life. The death of her granddaughter has been so much harder to take, with so many lost dreams and shared pain.

My second vignette involves my medical colleague, a professional brother, dealing with his pancreatic cancer. His chemotherapy has caused the tumor to shrink, but in the past two months there has been boring abdominal pain and cycles of infection related to stents near the pancreas. Infections have prevented further chemotherapy – the hair loss inducing medications that are needed to keep the cancer at bay. The pains have him questioning whether this is worth it. He’s my age.

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This week we must peek together at the more difficult times we can have – we will all have them, unless we die suddenly. Today and together we need to afflict ourselves out of our generally comfortable lives. We should even remind ourselves that emotional and physical well-being correlate with less compassion and less generosity: in psychological experiments, subjects are less likely to be generous or feel another’s distress when they are self-confident and comfortable.

The spiritualities that we have learned in childhood; the methods we have used to overcome tribulations so far; the pains we have come to terms with – all these tools to find meaning and comfort will need to be re-examined when the ordinary patterns of our lives are disrupted by illness and dying.

And this effort is not meant to discourage and dissuade: the effort to look at loss, sorrow and suffering I hope will be a way to grieve the losses in order not to repress them or cause the suffering to sour into repressed anger or callous us into intentional numbness. Suffering in fact could be a “red thread of meaning” that winds its way through our lives, connecting us, reminding us of how alike we are, not set apart – because others have had similar or even greater experiences with Suffering.

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This is the model of suffering that I hope to convey. The nature of suffering is related to the sense of loss the person has, the absence of coping. Dr. Cassell suggests that personhood has many dimensions, and when there are strengths in some dimensions, damages in other dimensions can be coped with. It is when there are insufficient coping mechanisms that suffering begins.

Cassell describes and illustrates dimensions of personhood that contribute to our identity and integrity. Besides bodily functions, he notes that there are other dimensions that affect health: personality, past history and life experiences, family ties, cultural background, economic, political and social roles, emotions, secret life and future dreams, spirituality – these are dimensions Cassell describes as making up personhood.

We suffer when we lose things. There is sadness at minor losses (possessions, competitions) and more sadness at bigger things (health, dreams, persons, security, etc.). How do we deal with loss and sorrow? The habits of childhood, extending to the experiences of adolescence and adulthood – these are how we learn to cope with losses. Is our response to loss focused on ourselves, or our family or tribe? Are the losses mourned with insights into the transience of what we have – what we cannot expect to have forever? Was the loss the result of injustice that calls for resistance and change outside oneself? Do we lower our expectations, or fight harder? Our answers to these questions relate to our spiritualities.

This audience knows how health is not a given. We must question and confront and discard the faulty truism that “if you don’t have your health, you don’t have anything.” Because someday we will not have our health. I sure hope at that point we don’t feel we have nothing.

And when we confront an accident, or an illness, or aging, the same questions are revisited: How well do the habits of childhood and the experiences or adolescence and adulthood serve us then? Is our response to loss focused on our tribe and ourselves? Are the losses mourned with insights into the transience of what we have – what we cannot expect to have forever? Was the loss the result of injustice that calls for resistance and change outside oneself? Do we lower our expectations, or do we fight harder? Did we expect not to suffer?

Physical symptoms of course require skilled attention. Pain can be addressed – but does it also have to be eliminated? Shortness of breath, nausea, constipation, anxiety, depression, insomnia, fatigue – the list grows long quickly. What expectations do we have of the physician to relieve, vs. the patient to bear?

Furthermore, the suffering can exist in aspects of personhood not open to measurement or observation. Patients can suffer losses in control, dignity, companionship, freedom, security, hope and meaning.

I belabor this point of losses on losses because sometimes the losses that accompany illness and aging might leave patients without external supports, only internal ones. I believe (though I do not know, as I have not been there), that spiritual supports might provide a lasting sense of not being alone in a harsh natural world, a calming sense that enough of our personhood and identity can survive intact despite the losses.

Most commonly we find support in the companionship of others. If we are fortunate enough to find a soul-mate or a spiritual guide, that companionship can be sustaining through incredible trials. The support of family is something we often count on. But I have also seen how the loss of relatives can devastate those left behind. Why does the world seem more unfair when we suffer the loss of good people? What meaning do we remain with?

The lives of some heroes (Bonhoeffer, Gandhi, King, Mandela) remind us how internal strengths can overcome loss of physical comfort. What allows some to survive and inspire others, while others perish in despair and isolation? There are many other, unsung heroes who have faced their own physical losses or the grief of losing loved ones, and found comfort in attachment or connection to Something Else – something larger than self and something lasting. That is the hope that we might want to emulate, and the examples that we can hope to set.

What is suffering? How do some patients without religion find comfort in their dying days? Why do some patients with religion seem to suffer terribly in their dying days? These were questions I sought to understand better by taking time to study at a seminary. I haven’t fully found answers, but I have found additional questions – How can we help those who suffer? How can the sufferer help herself or himself? Can we avoid suffering? Should we avoid suffering?

Heschel said history is a nightmare. Why is the suffering we encounter in America not bearable in comparison?

I have so many questions.

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We will read a poem about loss, kindness and compassion. I hope in our discussion that we can describe to others our times of despair and loss, and how we came through. “I am human; nothing human is foreign to me.”

Before we read this poem as a spiritual exercise, prepare with the Preparatory Prayer of St. Ignatius: “Ask God for the grace that all our intentions, actions and operations may be ordered purely for the service and praise of the Divine Majesty.”

We then bring our focus to this poem “Kindness” by Naomi Shihab-Nye, and the story around the poem. Imagine the scene in which it occurs. Ask God for what you hope to gain from the exercise.

Contemplate the poem and its effect on you. Ignatius suggests sometimes to focus even on individual words. Bring imagination to the experience of the piece. Use all of one’s senses with the piece; become a participant in the story – either as the protagonist or as one of the other characters. Feel the experience fully.

When we have completed the exercise (about 7 minutes/until ***), conclude with a “colloquy” with God. Have a conversation or dialogue with God about the subject and what you wish to do with it.

Then I hope we can share with others what we recalled, thought or decided during this time of quiet.

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Points to ponder:

  • The witness to suffering encounters his own suffering.
  • Craving/Attachment, Anger, and Ignorance produce suffering
    • Buddhist master:
    • Anger and loss
  • Temptations of Riches, Status, and Pride isolate us from God and each other. Become “indifferent” to that.
  • Trauma disrupts the healing and supportive effects of spiritual gifts
    •  Victimization
  • Not leaving alone, but taking parts of others with you.

Quotes for consideration:

  • Osler: “The natural man has only two primal passions, to get and to beget.”
  • Heschel: “an egocentric view of man and his needs as the measure of all values, with nothing to determine his way of living except his own needs, continues to be cherished” (Not Alone, 186).
  • Heschel: “dazzled by the brilliant achievements of the intellect in science and technique, we have been deluded into believing that we are the masters of the earth and our will the ultimate criterion of what is right and wrong” (Not Alone, 40).
  • Heschel: For evil is divergence, confusion, that which alienates man from man, man from God, while good is convergence, togetherness, union. Good and evil are not qualities of the mind but relations within reality. (- Abraham Joshua Heschel, Man is Not Alone, p. 120.)
  • Heschel: “What is an idol? Any god who is mine but not yours, any god concerned with me but not with you, is an idol.” (AJH, Religion and Race speech (1/14/1963)
  • Heschel: “The true aspiration is not that the self and all that is contained in it may last, but that all the self stands for may last” (Not Alone, 205).
  • Heschel: “Imagine how smug, complacent, vapid, and foolish we would be if we had to subsist on prosperity alone”
  • Heschel: the impulse to religion exists on a plane of inner experience, not objective reality (Not Alone, 236).
  • Heschel: “We all have being, even suffering and a struggle for existence in common; but do we have strivings, commitments in common? (Not Alone, 105).
  • Heschel: “Modern man may be characterized as a being who is callous to catastrophe” (God in Search, 369).
  • Heschel: “in the small things [the pious person] senses the significant, in the common and the simple he senses the ultimate; in the rush of passing he feels the stillness of the eternal.” (Not Alone, 278).
  • Knowledge from reason, but also from wonder and faith.
  • Edward St.Aubyn (quoted in Atlantic, May 2014): “a special kind of tender American obesity: not the hard-won fat of a gourmet, or the juggernaut body of a truck driver, but the apprehensive fat of people who had decided to become their own airbag systems in a dangerous world.”
  • Erikson: JW Fowler/E Erikson (Stages of Faith, p. 86): “Healthy children will not fear life if their elders have integrity enough not to fear death.” (from Erikson, Childhood and Society (1950), p. 269)
  • Buddhist master: “Suffering in America is a sin against the hopes of the rest of the world.”
  • DL: We have experienced our own pains and joys (we have one in common now), and we’re all trying to make sense of them. Our experiences shape us; our reflections help us grow. But it’s the sharing that is the miracle: somehow with sharing, love can grow and pain can shrink.

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What is suffering? How do some patients without religion find comfort in their dying days? Why do some patients with religion seem to suffer terribly in their dying days? These were questions I sought to understand better by taking time to study at a seminary. I haven’t fully found answers, but I have found additional questions – How can we help those who suffer? How can the sufferer help herself or himself? Can we avoid suffering? Should we avoid suffering?

The caveat of course is that I am only a physician. I am more familiar with the idea of death than the experiences of death and illness. “Professional distance” protects me from the full impact of being sick or losing someone dear. Within my personal life, I have to work hard to discard my rationalizations and intellectualizations when I have to “be real” with the losses of parents and friends. And as the Skin Horse in Velveteen Rabbit said, being real hurts, though he also said, “When you are Real you don’t mind being hurt.”

When physical illness strikes, it affects us in our bodies and our minds. We hope that the illness can be confined to a part of the body that can be fixed with devices or drugs. Even when it can be fixed, we count on the healthier parts of body and mind to sustain the patient until things work together again: integrity and coping can be restored. If it cannot be fully fixed – what then? The physical challenges might require economic and social supports to overcome. For so many patients in acute care and chronic care, it is obvious that it takes a village to maintain even a semblance of health and reduction of suffering.

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Kindness” by Naomi Shihab-Nye

Before you know what kindness really is

you must lose things,

feel the future dissolve in a moment

like salt in a weakened broth.

What you held in your hand,

what you counted and carefully saved,

all this must go so you know

how desolate the landscape can be

between the regions of kindness.

How you ride and ride

thinking the bus will never stop,

the passengers eating maize and chicken

will stare out the window forever.

Before you learn the tender gravity of kindness,

you must travel where the Indian in a white poncho

lies dead by the side of the road.

You must see how this could be you,

how he too was someone

who journeyed through the night with plans

and the simple breath that kept him alive.

Before you know kindness as the deepest thing

inside,

you must know sorrow as the other deepest thing.

You must wake up with sorrow.

You must speak to it till your voice

catches the thread of all sorrows

and you see the size of the cloth.

Then it is only kindness that makes sense anymore,

only kindness that ties your shoes

and sends you out into the day to mail letters and

purchase bread,

only kindness that raises its head

from the crowd of the world to say

It is I you have been looking for,

and then goes with you everywhere

like a shadow or a friend.

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About the poet and the poem

KIM: There are some pretty fierce lessons in your poem “Kindness.” How did you come to write that poem?

NAOMI: My husband, Michael, and I were on our honeymoon in Colombia in 1978. We knew we were in a difficult country filled with drug smugglers, but we were both optimists and felt we would be able to make it through. We ended up being robbed on a bus in the middle of the night. They took everything we had—passports, tickets, cameras, all our money—everything. It was a very stark experience. An Indian on our bus was killed, and there was the feeling that we could be next.

We got back on the bus, and the Indian was just left by the side of the road. We decided that Michael would have to hitchhike, even though it was very dangerous, to a larger city where he hoped he could get our travelers checks reinstated. I was left alone in this unknown town. I had no idea how would I eat or where I would sleep for the days until he returned.

I sat down in the plaza at the center of the town. All I had left was a little paper notebook and a pencil that had been in my back pocket (talk about traveling light!). I was trembling. It was twilight. I took out my pencil. I need a little guidance here, I thought. I need to know what to do next. And the poem “Kindness” seemed to float through the air of that little town and land on my page. It was like automatic writing; I wasn’t writing down concepts that I already knew and took for granted or had seen in practice. The ‘you’ in the poem is really me. I felt like some element in the air was speaking to me: “Before you know what kindness really is, you must lose things.”

Once I had written it down, things came clearer. I knew what I could do to find something to eat, where I might go to find a place to sleep. This gift of openness and possibility overtook the sense of being stricken. The poem was a lever I held onto as I found my way.

There was this gang of street ragamuffins who collected Coke bottles and turned them in for a few pesos so they could buy a bun to eat. I realized they knew something I needed to know: when you have nothing, where do you get a bit of food? I showed them that I had nothing, no bag, no purse, no wallet, nothing, and I needed their help. They were so gracious! They allowed me to join their group and eat a bun now and then.

Once the poem was printed, it started having its own life. Now it belongs to so many people in different ways. I’ve always believed poems are in the air around us. If we listen in a certain way, they will find us. If we allow them into our minds and consciousness, they can help us and then if we send them out, any way we can, then there’s the possibility of them having a bigger life than any life we could ever have dreamed for them.

https://www.dailygood.org/story/373/the-incomparable-naomi-shihab-nye-on-kindness-kim-rosen/

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