From “Hard Choices for Loving People”
by Hank Dunn

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. I have seen CPR used on some very frail, dying patients, though the overwhelming majority refuse such treatment. I have seen some patients kept alive on feeding tubes for years and other patients or families withhold or withdraw them. I have seen failing patients rushed to the hospital for more aggressive treatments. After a few of these trips, most people choose to treat only in the nursing home. A “comfort measures only” order or entering a hospice program is chosen by some and adds great support to the patient and families. What makes the difference in choosing one treatment plan over another?

In more than a decade as a full-time chaplain at a nursing home, I have thought much about medical interventions on behalf of the frail elderly. 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? I am convinced that ethics, medical appropriateness, legal requirements, morality or religious faith is only a small part of the decision-making process for using these therapies. Perhaps 90% of the reasons these treatments are pursued is that the family has not been able to let go (and the physician has also not let go nor informed the decision makers of the marginal benefit of such treatment plans). Those who choose such life-prolonging treatments for the frail elderly do so primarily out of an inability to let go and not out of ethical necessity or medical appropriateness. How else can you explain such a wide range of treatment choices for similarly afflicted patients?

Care givers who share cultural and religious backgrounds will still choose different treatment plans because one care giver is having a harder time letting go. This is especially obvious when brothers and sisters choose different treatments. I have heard often, “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 treatment. Decision makers 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.

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 three hour drive from the town where her mother was hospitalized. Her 82 year old mother’s health had been failing for two 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. Is it any wonder 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?
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 eighties fed by an artificial feeding tube. In four years at our nursing home, he rarely made any response to those around him. His wife could answer the questions I asked her 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 two years. It finally came down to a meeting with myself, an administrator, a daughter, the wife and her pastor. 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. I will never forget her next words, “I feel like a great burden has been lifted from my shoulders.” She had let go.

Can you let go? Of course you can, though some people never do. As a pastoral care giver, I wonder how I can help families and patients come to the place of letting go. 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. 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.

Some Religious Questions
Often a family member says to me, “When God calls a person home, then they will go, no matter what we do.” That comment usually comes from a family choosing aggressive treatment like CPR or a mechanical respirator. 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.

The Spiritual Nature of the Struggle
Though 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 where we happen to reside. We are confronted most profoundly with our spiritual nature when someone we love is dying or does die. Now that 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 most ultimate of questions. Sogyal Rinpoche says we are trying to avoid what he calls “impermanence” - the fact that we are not going to live forever. Daniel Callahan says the struggle is accepting our mortality. Scott Peck writes, “And when I asked what is most important about our human existence, the first answer that came to my mind was that it is limited. We are all going to die.” 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.” Sogyal Rinpoche writes:

One of the chief reasons we have so much anguish and difficulty facing death is that we ignore the truth of impermanence. We so desperately want everything to continue as it is that we have to believe that things will always stay the same. . . . Reflect on this: The realization of impermanence is paradoxically the only thing we can hold onto, perhaps our only lasting possession. . . . It is only when we believe things to be permanent that we shut off the possibility of learning from change. If we shut off this possibility, we become closed, and we become grasping. Grasping is the source of all our problems. Since impermanence to us spells anguish, we grasp on to things desperately, even though all things change. 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.

This teaching of the impermanence of life can be found in all cultures, religions and ages. Yet it seems in our current American 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 for frail elderly patients becomes, at bottom, a spiritual issue. To let go, we must have the sense that this person will be upheld.

Giving Up and Letting Go
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. Giving up implies a struggle-Letting go implies a partnership. Giving up lives out of fear-Letting go lives out of grace and trust. Giving up believes that God is to be feared-Letting go trusts in God to care for me. The truth is that we will die whether we give up or let go. 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?

Viktor Frankl is 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?” Of the many stories he 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 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.’”

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. 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.

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.

The timeless Serenity Prayer can be a comfort in all of life but especially at the end of life: “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.”

My wish would be that elderly patients, their families and physicians would have the grace to accept that there comes a time 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 may they have a sense of being upheld by a loving God in the midst of a caring universe.

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 would be 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 sixty-two 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.”

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.”

My message to those who are taking this journey to letting go 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 go with hundreds of patients and families, I only have a greater sense of the wonderfulness of life.

Chaplain Hank Dunn
Hospice of Northern Virginia
Leesburg, Virginia