An excerpt from: Hard Choices for Loving People:
CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness, Fifth Edition

By Hank Dunn
www.hankdunn.com

Copyright  © 2009 by Hank Dunn (Used by permission)

Changing the Treatment Plan

One of my goals in writing this booklet was to introduce those who are making medical care decisions for a patient to the wide range of what is acceptable from legal, ethical, moral, and medical points of view. What makes the difference in choosing one treatment plan over another?

In my years of experience as a healthcare chaplain, I have thought much about medical interventions on behalf of patients at the end of their lives. I have considered CPR, artificial feeding, IV therapy on the dying patient, hospitalization, and even the use of antibiotics and diagnostic work on failing patients. Often, in the eyes of my colleagues on the medical team and in my own opinion, these treatments are not medically indicated, marginal in their benefit (if there is any benefit at all), increase the burden of living, possibly prolong the dying process, and are not required by ethics, medicine, law, morality, or faith. Why are they done?

Perhaps the reason these treatments are pursued is that the family has not been able to let go (and the physician has also not been able to let go or has not informed the decisionmakers of the marginal benefit of such treatment plans). Those who choose such life-prolonging treatments for failing patients do so primarily out of an inability to let go and not out of moral necessity or medical appropriateness.123,124 How else can you explain such a wide range of treatment choices for similarly afflicted patients?

I see these emotional and spiritual struggles often overwhelming all other considerations. Caregivers who share cultural and religious backgrounds will still choose different treatment plans because one caregiver is having a harder time letting go.70,125-128 This is especially obvious when brothers and sisters choose different treatments. I have many times heard, “The rest of us had made the decision to let Mom go, but our brother wasn’t ready yet.” Another reason I know that decisions are mostly based on the emotional and spiritual struggle of letting go is because I have seen so many family members change from an aggressive treatment plan to withdrawal of curative treatment.  Decisionmakers do not usually have a change of mind about ethics, law, morality, or religion. They have a change of heart. They finally come to the point of being able to let go and just let things be.

The  Emotional Nature of the Struggle–Treating the Wrong Patient

A friend came to me on a Monday and was fighting back tears when she said, “I have to make a life-and-death decision about my mother by Thursday.” My friend was about a 3-hour drive from the town where her mother was hospitalized. Her 82-year-old mother’s health had been failing for 2 years. In that time she had had two strokes, was in kidney failure, and at the time was in the hospital on dialysis. My friend and her family were facing the decision of whether or not to withdraw the dialysis.

Thinking of the questions to help make a decision, I asked, “How effectively is the dialysis working?”

“Oh. The doctors say it isn’t doing any good.”

I asked, “Did your mother ever give any indication of what she would have wanted?”

“Yes. She said she never wanted to be on dialysis.”

I couldn’t believe what I was hearing. I said, “I am going to be straight with you because you are a friend. This is not a hard decision. There is no question that you stop treatment. What is going on here that makes this so difficult?”

She began to choke up again, fighting back tears, “I guess I am feeling guilty for not having visited my mother enough these last couple of years.” At least she was honest enough with herself to know the real issue. A patient was being treated miles away in order to take care of a daughter’s guilt. This happens more often than we would like to admit.

Once a physician wrote an order to start an IV to hydrate a dying patient, and he said to the nurse, “We’re doing this for the family.” He knew that this treatment probably would not add to the patient’s comfort and might even contribute to her discomfort. But he was doing something for an emotionally distraught family. I wish he had said to the family, “I know you are struggling with the fact that your mother is dying. None of us wants to lose our mother. But starting an IV will not help her nor stop her eventual death. But I am concerned about you and want the nurse to call the chaplain or social worker so you can talk about what you are struggling with. We will keep your mother comfortable and as free from pain as possible.”

Sometimes it seems easier to aggressively treat patients, perhaps even for years, than to help families confront the emotional and spiritual issues that are driving the treatment choices. Indeed, physicians are trained to order medical treatments and not necessarily to help patients and families with the more difficult struggles in their souls. It is understandable that they would address a family’s emotional struggle by ordering aggressive treatment of a patient. The problem is, they are treating the wrong patient.

Can I Let Go and Let Be?

Once a daughter told me, as her father was very close to death, “I know a ‘no CPR’ order is the best thing, but I just can’t let go.” She wasn’t talking about medical or even ethical decisions. She was in the midst of an emotional struggle to let go. Her holding on was just an illusion. Perhaps she felt CPR attempts would allow her to hold on to her father for just a little longer, but in actuality that treatment could not accomplish that goal. She finally requested the “no CPR” order only days before his death.

We had another patient in his 80s fed by an artificial feeding tube. In 4 years at the nursing home, he rarely made any response to those around him. His wife could answer the questions I asked to help her make a decision whether or not to withdraw the artificial feeding and let her husband die. She said, “I know he would never have wanted to be kept alive like this. I know it would be best if he just died. I know he will never get better. But I just can’t let go.”

She struggled with the withdrawal of treatment decision for more than 2 years. It finally came down to a meeting with an administrator, a daughter, the wife, her pastor and me. We reviewed the patient’s condition and what his wishes would have been. The minister asked if the administrator and I would leave the room for a minute. When he called us back in, the wife said she had decided to withdraw the treatment and let her husband die. She signed a document authorizing the withdrawal of the artificial feeding. I will never forget her next words, “I feel like a great burden has been lifted from my shoulders.” She had let go and let be.

Can you let go and let be? Of course you can, though some people never do. And it can take a long or a short time. As a pastoral caregiver, I wonder how I can help families and patients come to the place of letting go and letting be. Years after the event, I even called three family members of two patients who died after the withdrawal of artificial feeding. I asked each, “Did you have any regrets in your decision to withdraw treatment?” Without knowing what the others had said, they each immediately responded, “Yes. I regret that we did not withdraw treatment sooner.” Then I asked, “Was there anything either I or the nursing center could have done to help you come to this decision sooner?” Again, they all responded, “No. It just takes time.”

It is because of this element of time that I have seen the families of dementia patients tend to more readily accept letting go of the patient in the end.55,129 Because of the slow progression of the disease, the family has been having to let go of parts of this person for years. They have already been grieving and letting go, and therefore they find saying “no CPR” or no artificial feeding tube is the next step in releasing this person. I do not mean to imply that this decision is “easy” for anyone. Yet, because of the emotional nature of these decisions, families of patients with dementia have already been going through much of this letting go and letting be.

A Lifetime of Letting Go

After describing the difficult and sometimes painful struggles people go through in letting go of someone at the end of life, a massage therapist friend of mine said, “This is the same issue my clients are dealing with. They come with a stiff neck or back pain. They have to learn how to let go.”

A natural response to the possibility of losing someone is to hold on tighter or to try to gain more control. Ironically, this does not lead to a life of freedom and joy, the very things we were pursuing. Most of us do learn to let go. We let go of our childhood and accept adult responsibilities. We let go of our teenage children and our attempts to control them. We let go of finding happiness in possessions or careers. We even learn that we have to let go of other people and not be dependent on them for our happiness. To learn these lessons, we have to accept the fact that these things or people were gifts in the first place.

There are two ways to hold on. We can grasp tightly as we would a coin in our fist. We fear we will lose it, so we hold it tight. Indeed, if we open our hand palm down the coin falls from our possession, and we feel cheated. The other way to hold on is by opening our hand palm up. The coin may sit there, or it could be blown away or shaken out of our “possession.” But while it is there, we are privileged to have it. We hold on with an open hand. Our hand is relaxed and we experience freedom.130

I do not want to trivialize or oversimplify the deep struggles within our hearts as we make end-of-life decisions. Yet I am convinced that letting go and letting be is a way of life that can be experienced throughout our lifetime. Grasping, controlling individuals tend to be so to the very end of life. Those who live life with a sense of gift and grace also tend to do so to the very end of life.131 Daniel Callahan writes,

How we die will be an expression of how we have wanted to live, and the meaning we find in our dying is likely to be at one with the meaning we have found in our living.  . .  . [A] person who has learned how to let life go may have not only a richer and more flexible life, but also one that better prepares him for his decline.132

Throughout most of our lives, aggressive curative medical treatment is appropriate. Those who live life with a sense of grace and letting go can seek a cure from diseases from which they would have a reasonable opportunity to recover.  But those who have a sense of giftedness of life have an easier time letting go when treatment has a limited possibility of cure and a greater possibility of increasing burden.

Two studies uncovered the fact that CPR is used less in religious nursing homes.6,7 It was not the purpose of these studies to find out why there is less CPR in these religious homes, but one reason may be because they have a positive view of life after death. I do not feel that adequately explains the difference in the use of CPR. My guess is that the administration and staff have a sense that life is a gift and to hold on too tightly is to betray the sense of giftedness.  They live daily with an open hand, appreciating each moment and not having to control events—including not having to stop death. By their presence, they then communicate this lifestyle to patients and families. I hope my faith is a faith for living fully each day with a sense of grace and gift. Then when I can no longer have this gift of life, I do not have to grasp it either for myself or for those I love.

Some Religious Questions

Sometimes a family member, choosing aggressive life-prolonging treatment like CPR or a mechanical ventilator, says something like,  “When God calls a person home, then they will go, no matter what we do.” The patient then continues to be kept alive on the machine. But I believe some things we do can stop people from being “called home.”

What greater message could a body be giving us that it is “time to go” than the heart stopping? When a body can no longer take in food in the natural way, we might be “playing God” by inserting a feeding tube. Then again, we might be playing God by not using all the technology “He has given us.” There are no easy answers.

I would rather not make assumptions about what God is trying to tell us through someone’s medical condition. Not that we should approach these decisions without prayer and the counsel of our spiritual guides. But we cannot presume that God is trying to tell us something one way or the other. Just because we have been “blessed” with certain technology does not mean we are obliged to use it.

On my first visit into the home of a woman with advanced metastatic cancer the husband said, “Hank, God has told me that my wife is not going to die so I don’t want any negative talk about death and dying, only positive thoughts of healing.” I said I would honor that but that I usually let the patient and family set the agenda and if the topic of dying came up I would discuss it.

A month or so later they had gotten the news that the cancer had spread to yet another organ. When I arrived for a visit the husband was preparing to go out the door to work. “You know how I told you, God has told me my wife is going to live?” he started. “Well, I still believe that but Satan is trying to get me to doubt it. Would you pray for me?” I said of course I would. He left and I turned to his wife and asked her if she had as much confidence that she would not die as her husband did. She said no and began to cry. Through her tears she said, “I am afraid if I die I will be disappointing my husband.”

On my next visit I told him what she had said. He sat close to her, took her hand, and assured her that she could never disappoint him. I said I had two concerns about only talking of healing in the midst of such a grave condition. “My first is that you may not adequately control the pain under the logic that since she is not dying let’s just give her Tylenol.” I continued, “My other concern is that you will miss having some very important conversations if you do not allow for the possibility of death. We all need to live as if each day were our last but in your situation, having that attitude is most important.”

After her death he said that he knew that God told him “she will not die” because God felt he wouldn’t be able to handle the truth. I don’t like to speak for God but I just do not believe that the Lord intentionally tells us a lie. In my opinion, this man so much wanted to hear the words “your wife will not die” that he imagined it came from God. It is perfectly understandable for him to not want to lose his wife. And it is surely appropriate to pray for healing. But I believe we are on dangerous ground thinking we get a clear divine message that someone with advanced end-stage cancer will not die when the death expectancy rate for all of us is 100 percent.

The Spiritual Nature of the Struggle

Although a few may have these questions about God or religion, we all ask the deeper spiritual questions as we contemplate the end of life. When I say “spiritual,” try not to think of religion, a place of worship, or an organized way of thinking about God. I am using the word in the broader sense of “that which gives life ultimate meaning.” Spiritual, in this sense, denotes that essence of ourselves that is greater than the flesh and bones that we inhabit. We are confronted most profoundly with our spiritual nature when someone we love is dying or does die. After the breath of life has gone out and the blood no longer gives vitality to the flesh, what is the meaning of this person’s life?

Sadly, most people spend much of their life avoiding this ultimate question.133-135 We surround ourselves with things and activities to mask the reality of the truth of our impermanence. We grasp on to life and our loved ones who are on the edge of dying. But the grasping can bring as much spiritual pain as the dying itself. Many times I sat in our hospice team meeting as we discussed a family who was struggling so hard to hold on. They were grasping and controlling. I have said, “Dying is hard enough as it is. These people are making it so much harder than it needs to be.” Sogyal Rinpoche writes,

We are terrified of letting go, terrified, in fact, of living at all, since learning to live is learning to let go. And this is the tragedy and the irony of our struggle to hold on: not only is it impossible, but it brings us the very pain we are seeking to avoid.136

This teaching of the impermanence of life can be found in all cultures, religions, and ages. The Psalmist wrote, “For he knows how we were made; he remembers that we are dust. As for mortals, their days are like grass; they flourish like a flower of the field; for the wind passes over it, and it is gone, and its place knows it no more.”137 Yet it seems in our current culture, we make every effort to deny its existence and fight “to the very end,” to say “it ain’t so.” It is at this point––whether or not we accept the certainty of our own death and the deaths of those we love––where making end-of-life decisions becomes, at bottom, a spiritual issue. To let go, we must have the sense that this person will be okay even in death.

Giving Up, Letting Go, and Letting Be

A psychotherapist told me a man who was struggling with AIDS once said, “I have finally learned the difference between giving up and letting go.”  I have reflected often on his thoughts and see them as a struggle we all go through. This is especially true as we wrestle with end-of-life decisions.

The truth is that we will die whether we give up, let go, or let be. We are making a choice about the nature of our dying or the dying of one we love. We die in trust and grace or in fear and struggle. Perhaps I titled my booklet improperly. We are not faced with many hard choices. We are faced with one hard choice. Can we let go and live life out of grace or must we hold on out of fear? Or can we just let things be?

That is really what we are talking about, “letting things be.” To withhold or withdraw artificial and mechanical devices is just returning the patient to a natural state. We are accepting what is. We have come to accept that the patient is dying and we will just let be.138

 

Giving Up, Letting Go, and Letting Be

Giving up implies a struggle
   Letting go implies a partnership
     Letting be implies, in reality, there is nothing that separates

Giving up says there is something to lose
   Letting go says there is something to gain
     Letting be says it doesn’t matter

Giving up dreads the future
   Letting go looks forward to the future
     Letting be accepts the present as the only moment I ever have

Giving up lives out of fear
   Letting go lives out of grace and trust
       Letting be just lives

Giving up is defeat at the hands of suffering
   Letting go is victory over suffering
       Letting be knows suffering is often in my own mind in the first place

Giving up is unwillingly yielding control to forces beyond myself
   Letting go is choosing to yield to forces beyond myself
     Letting be acknowledges that control and choices can be illusions

Giving up believes that God is to be feared
   Letting go trusts in God to care for me
     Letting be never asks the question

  • Hank Dunn

Viktor Frankl was a psychiatrist and a Jew who was imprisoned for several years in Nazi concentration camps. As he observed the behavior of the inmates, of the guards, and of himself, he asked the question, “Can life have meaning in such horrible conditions?” His answer was “yes.” I refer to those who suffered under the Nazis, not to make light of their suffering. Indeed, their suffering had an element of evil that none of us hope to ever have to face. That is my point. If they, in such awful circumstances, can find hope and meaning, surely I can in whatever hardships life brings my way.

Of the many stories Frankl relates, I have been most moved by the reflections of a young woman as she lay dying. In this story is the essence of letting go and letting be and the assurance that, at bottom, the universe is a caring place:

This young woman knew that she would die in the next few days. But when I talked to her she was cheerful in spite of this knowledge. “I am grateful that fate has hit me so hard,” she told me. “In my former life I was spoiled and did not take spiritual accomplishments seriously.” Pointing through the window of the hut, she said, “This tree here is the only friend I have in my loneliness.” Through that window she could see just one branch of a chestnut tree, and on the branch were two blossoms. “I often talk to this tree,” she said to me. I was startled and didn’t quite know how to take her words. Was she delirious? Did she have occasional hallucinations? Anxiously I asked her if the tree replied. “Yes.” What did it say to her? She answered, “It said to me, ‘I am here–I am here–I am life, eternal life.”’139

If a woman dying in a concentration camp can see that there is goodness, that there is life, then what is wrong with my vision?

Fatal Isn’t the Worst Outcome

Often we gain the greatest insights on how to live from those closest to death. Many who have a near-death experience in which they were considered dead and are brought back to life report that the “other side” is a wonderful place and their fear of death is gone.140-142 Their lives are changed for the better after that experience.

Sandol Stoddard reports conversations with hospice patients:

“Let me tell you, Doctor,” said an eighty-three-year-old Hospice of Marin patient, “dying is the experience of a lifetime.” What she meant by these splendid words remains, like the fabric of life itself, a mystery. “I think I was meant to come here,” says Lillian Preston’s final letter from St. Christopher’s Hospice, “so that at last, I could experience joy.” “I never knew how to live until I came here to die,” said an elderly, blind gentleman of St. Joseph’s Hospice in London.143

Certainly families, friends and the larger community are saddened and grieve the loss of someone we love. Yet we still have to incorporate this loss into our larger understanding of the meaning of life. Etty Hillesum, who would eventually die in the Auschwitz concentration camp, wrote about her contemplation of her own death. She said,

“The reality of death has become a definite part of my life; my life has, so to speak, been extended by death, by my looking death in the eye and accepting it, by accepting destruction as part of life and no longer wasting my energies on fear of death or the refusal to acknowledge its inevitability. It sounds paradoxical: by excluding death from our life we cannot live a full life, and by admitting death into our life we enlarge and enrich it.”144

My wish is that patients with serious and life-threatening illnesses, their families, and physicians would have the grace to accept that a time comes when certain medical treatments only prolong the dying process. May they also have the wisdom to know when that time comes. And in those moments of letting go and letting be may they have a sense of being upheld by a loving God in the midst of a caring universe.

The Serenity Prayer

God, grant me the serenity to accept the things I cannot change;
 the courage to change the things I can;
and the wisdom to know the difference.

                • Reinhold Niebuhr145

Philosophers, sages, and saints through the ages often show a profound appreciation that the essence of life is to live each day fully and that a life is not negated by death. My hope is that patients and families will concentrate on living each day fully while accepting modern medicine’s inability to extend the length of life indefinitely.

As conservationist Edward Abbey thought about the ending of his short 62 years, he commented, “It is not death or dying which is tragic, but rather to have existed without fully participating in life is the deepest personal tragedy.”146 Dr. Bernie Siegel works with people who are living with cancer. He has formed groups for patients called ECaP groups, for Exceptional Cancer Patients. A group member said one day, “Fatal isn’t the worst outcome.” And Siegel adds, “Not living is the worst outcome.”147

My message to those who are taking this journey to letting go and letting be is one of hope. We can live each day fully even as we accept the certainty of our own death and that of those we love. To accept medicine’s inability to put off death indefinitely is not a defeat. On the one hand, it is accepting the world as it was created, while at the same time having a profound sense that the Creator has granted life as a gift. For me to hold on and grasp out of fear is to deny the gift and the Giver. Having walked this journey to letting be with hundreds of patients and families, I only have a greater sense of the wonderfulness of life.

Hank Dunn, Chaplain

Endnotes

Abbreviations: BMJ = British Medical Journal; JAGS=Journal of the American Geriatrics Society; AJHPM= American Journal of Hospice and Palliative Medicine; JAMA = Journal of the American Medical Association; NEJM = New England Journal of Medicine
123. Sonnenblick M, Friedlander Y, Steinberg A. Dissociation between the wishes of terminally ill parents and decisions of their offspring. JAGS 1993;41:599-604.
124. Thomasma DC. Reflections on the offspring’s ethical role in decisions for incompetent patients: A response to Sonnenblick, et al. (editorial), JAGS 1993;41:684-6.
125. Ahronheim JC. State practice variations in the use of tube feeding for nursing home residents with severe cognitive impairment. JAGS 2001;49:148–52.
126. Mitchell SL. Nursing home characteristics associated with tube feeding in advanced cognitive impairment, JAGS 2003;51:75-9.
127. Kunin J. Withholding artificial feeding from the severely demented: merciful or immoral? Contrasts between secular and Jewish perspectives. J Med Ethics 2003;29:208-12.
128. Clarfield AM et al. Enteral feeding in end-stage dementia: A comparison of religious, ethnic, and national differences in Canada and Israel. J of Gerontology 2006;61A(6):621-7.
129. Wolfson C et al. A reevaluation of the duration of survival after onset of dementia. NEJM 2001;344(15):1111-6.
130. Rinpoche, S.The Tibetan Book of Living and Dying. New York: Harper,1992:34-35.
131. Koch KA, Rodeffer HD, Wears RL. Changing patterns of terminal care management in an intensive care unit. Crit Care Med 1994;22:233-43.
132. Callahan, D. The Troubled Dream of Life, 1993:149, 151
133. Becker, E. The Denial of Death. New York:The Free Press, 1973.
134. Singh, KD. The Grace in Dying: how we are transformed spiritually as we die. New York: HarperCollins, 1998.
135. Callahan D. Death: “The distinguished thing.” Hastings Center Report 2005;35(6):S5-S8.
136. Rinpoche, S.The Tibetan Book of Living and Dying,  33.
137. Psalms 103:14-16.
138. Dunn, H. Light in the Shadows: Meditations While Living with a Life-Threatening Illness, 2nd Ed., 2005, p. 67.
139. Frankl, VE. Man’s Search for Meaning, New York: Washington Square Press,1984: 90.
140. Nuland, SB. How We Die: Reflections on Life’s Final Chapter, New York: Alfred A. Knopf,1993: 138-139.
141. Stoddard, S. The Hospice Movement, 204-205.
142. Rinpoche, S.The Tibetan Book of Living and Dying, 95.
143. Stoddard, S. The Hospice Movement, 211, 225.
144. Hillesum, E. An Interrupted Life and Letters from Westerbork. New York: Henry Holt & Co., 1981: 155.
145. Niebuhr, R. “The Serenity Prayer” (1934), quoted in Familiar Quotations, 16th Edition, edited by John Bartlett, Justin Kaplan, Boston: Little, Brown and Company, 1992: 684.
146. Quoted in: Petersen, D. Where the Phantoms Brood and Mourn. Backpacker, 1993;21:40-48.
147. Siegel B (interview). Laughing Matters. 1990;6(4):127-39.