Learning from End-of-Life Stories
Preferring a discussion of parts failing to persons dying.
Moments exist in medicine where the need for the human side dwarfs the need for technology and a statement that “things have gotten a lot worse in the last week” has more meaning than “the kidney function is worse today.” When patients, families, and physicians recognize that life is coming to an end, they fashion their decisions differently, often cease measures to sup- port life, and concentrate on comfort. Together they often decide in ad- vance not only what they should not do, but what will help. Reflecting on the meaning of these moments enhances our understanding of what is the essence of medical care for all patients and their families.
The comedian lay dying, the story goes, and his pals gathered at his bed- side, where one of them said, “It must be tough to die.” His response: “Dy- ing is easy. Comedy is difficult.” Dying may not be so easy, but we need to ask these questions: Do physicians make dying more difficult than it has to be? Do they prolong treatment inappropriately? Do they squander opportuni- ties to intervene effectively? What can we learn, as we answer these ques- tions, that has universal application to caring for all who are ill? From my practice, here are four stories that help to define and clarify the issues.
TALKING ABOUT SERIOUS MATTERS WITH PATIENTS
Case 1: A Middle-Aged Man with Widespread Cancer
In his mid-50s, a successful executive had incurable cancer of the kidney with lung metastases, for which chemotherapy was not very effective. He was hospitalized because of vomiting, which was improving with intravenous fluids and medicines to control his nausea. His urologist asked me to see him for “general medical evalu- ation” and help with his long-term care.
At our first meeting, the patient told me he was aware of his poor prognosis, had spoken in depth with his wife and children about it, and had already made his own funeral arrangements. He seemed very much at ease. I saw him daily, and our con- versations were substantial as we talked not only about his illness but also about his life, his career, his relationship with his wife and children, his philosophy of life, and his values.
Here is what I learned:
One can talk about serious matters with patients. In this and all of the other stories in this chapter, my role was not difficult. While I needed to choose my words carefully, the honesty of the conversation and the depth of the discussion of facts and feelings became the foundation for our further deci- sions. Our trust in each other contributed to the effectiveness of the ther- apy. Physicians need not shrink from being straightforward, “preferring a discussion of parts failing to persons dying.”1
The patient may see silence on these matters as the equivalent of a lie, and caught in a lie, a physician may have to work very hard to reestablish trust. Hardly ever is this the first crisis the patient has faced. When we fail to speak honestly, we assume the patient cannot handle the information. Experience shows otherwise. My discussions with this patient provided me the opportunity to discover his strengths, validate them as a resource for him, and shore up his weaknesses.
Caring for a dying patient can be an especially rich time for the physician. I looked forward to seeing this patient each day in the hospital. I went from learning about him to learning from him. He started as my patient and be- came my teacher.
ALLOWING THE PATIENT TO EXPRESS HER VIEWS, AND EXPLORING HER VALUES
Case 2: A 60-Year-Old Woman with a Pancreatic Tumor
The gastroenterologist asked me to see this 60-year-old woman with pancreatic cancer for help in managing her diabetes. She had developed jaundice, which indi- cated bile duct obstruction. After abdominal surgery showed incurable cancer, tubes fed her intravenously and drained her stomach, abdominal incision, and bladder. Each day she needed four insulin injections. The gastroenterologist and the surgeon were managing her case, each taking care of only part of her. She had no primary physician and no close family.
I reviewed her hospital chart, interviewed and examined her, and made recom- mendations regarding the management of the diabetes—not a difficult task. In ad- dition, I wondered if anyone had asked her, “What’s this like for you? How do you feel about going on with the treatment?” So I asked. The experience was over- whelming, she said, a nightmare. Given the seriousness of the diagnosis and the hopelessness of the outcome, she would prefer that treatment cease; all she wanted was comfort. She was relieved that I asked. It had not occurred to her to voice her views to the other physicians, nor had they given her the opportunity.
Here is what I learned:
Patients need to be authorized to voice their views. Often they do not be- cause they have never been in the habit of doing so in any situation, medi- cal or otherwise; because they are intimidated by professionals; because they are afraid they will be viewed as “giving up”; or simply because they do not know that it is allowed. While people are more vulnerable when they are ill, they are also more accessible to inquiries from physicians, nurses, so- cial workers, and clergy about their feelings, values, and philosophy of life. We should take advantage of that accessibility.
The physician needs to explore the patient’s values. Failing that, one may in- advertently provide unwanted care or find unexplained conflict with the patient’s wishes.
There is more to comfort than pain control. Even when it seems we can do no more, we can do a great deal. Many formal religious prayers for the ill call for “healing of the spirit” along with “healing of the body.” Even if someone’s body cannot be healed, there is still the opportunity to find comfort in resolving conflicts and healing relationships. Part of our responsibility as members of the healing professions is to facilitate that process. Treatment includes many ac- tions other than those that cure, and there is much that a physician can do to provide comfort and guidance for the patient and the family. Without this crit- ical activity, the illness becomes unnecessarily chaotic, the patient and the family may feel isolated or abandoned, and they may squander precious time.
THE EVER-CHANGING ROLE OF THE PHYSICIAN Case 3: A 70-Year-Old Man with Widespread Cancer
On his return from a well-known medical center where this patient had been re- ceiving chemotherapy for widespread cancer, the retired executive’s wife called to ask that I become his physician. The initial treatment had failed, an experimental drug was being offered with “less than 25 percent chance of success,” and he was having ongoing pain that medicine poorly controlled. Stopping chemotherapy had not been considered. The adult children lived at least three hours away by plane. Prior to this call, he had no primary physician in his hometown.
On my first visit to his home, we concentrated on pain control, and I prescribed ibuprofen, a mild but often effective drug when given regularly several times a day. Subsequent visits concentrated on achieving better pain control using morphine, on helping him understand his illness (he knew that the prognosis was poor), and on addressing alternative ways of treating the progressive malignancy, including more chemotherapy. He declined the latter.
With his wife, we also talked about their experience and their fears. “What’s this been like for you?” I asked. It was clear that they had a strong, mutually sup- portive relationship and that they were sharing the story of the drama of his illness with their out-of-town children, who began to appear at their home for prolonged stays. As time went on, a hospice nurse became involved, and she and I collabo- rated with the family on his care. Even though his condition continued to decline, the family was becoming more and more self-sufficient in meeting his needs and their own. With their concurrence, my visits became more widely spaced; they did not need me as much. He died within a few months of my first visit.
Here is what I learned:
Once more, medicine is a collaborative effort, and the most important partici- pants in the collaboration are the patient and family. Consulting physicians, so- cial workers, nurses, and clergy help. Their different points of view may reflect their professional paradigms of care, who they are as individuals, and their values and prejudices, which they may not even recognize. But there must always be a primary caregiver, the general contractor who is ultimately responsible and who can integrate diverse points of view into a single set of recommendations and a plan. Someone has to be in charge. Though I pro- vided no specific anticancer treatment, I did much more. I assessed his needs and the needs of his family in the broadest sense, and I addressed his prognosis with all of them. I involved others—family and hospice nurse—in his care.
Illness is not a single moment but a dynamic process in which people can come to terms, make peace, and learn how to cope. The physician’s role needs to be dy- namic to accommodate these changes. Though I was more important to the patient and his family in the beginning, as the family rallied, became more active in his care and in looking after each other, and as other professionals became involved, the need for a physician lessened. To have continued fre- quent visits might have been seen as an intrusion.
DISCOVERING WHERE THE PATIENT IS
Case 4: End-Stage Heart Disease in a 70-Year-Old Woman
Twenty years after her first myocardial infarct (heart attack) this 70-year-old col- lege professor was having more and more difficulty with her heart: repeated epi- sodes of congestive heart failure and moments of sudden prolonged rapid heartbeat requiring an implanted defibrillator. Usually their recurrence was unpredictable, and so they were all the more distressing for her and her family. After one of these events, while she was still unconscious, I called her husband and daughters to- gether to talk about the poor prognosis. They declined the opportunity to declare, “Do not resuscitate,” and they became angry that I had even opened the subject. The patient again recovered, and two years passed, during which several more epi- sodes occurred and her health continued to decline. During this time, I often asked her alone or together with her husband, “How are things overall for you? What’s all this like for you?” She was displeased whenever I included her husband in the con- versations, and at her last visit declared, “I’m changing doctors! Coming to see you is like sitting shiva [i.e., coming to a Jewish house of mourning].” She died a few months later.
Here is what I learned:
Sometimes, even with the best and most sensitive of intentions, things run amok in the physician-patient relationship. If there is no recognition of the pa- tient’s and the family’s expectations, there can be no real alliance between them and the physician. Physicians need to discover how the patient sees her illness, what her concept of the cause is, what issues she sees, what her view of the prognosis is, what she sees as the impact on her family and her re- sources, and what she fears. Those may be fear of unrelenting pain, emo- tional isolation from family, or abandonment by the physician. Unless we start where the patient and the family are, we risk undermining the rela- tionship and magnifying the panic that can come with having a serious ill- ness.
Be realistic, but do not remove all hope. Tailor the message to the needs of the individual. In this case, removing hope when the patient and her fam- ily were not ready for that step was premature.
SEEING BEYOND THE OBVIOUS DETAILS
Regardless of what we know about a certain illness or a certain patient, there is always more to learn. As physicians, we enlarge our knowledge and our effectiveness by learning from patients. That is truly learning from ex- perience.
However complex the data, however many consultants are involved, the patients’ experience of illness, their feelings, and their values help to fashion a plan of care and enhance its effectiveness and appropriateness. Especially when time is precious, we can squander time if the care is not what the patient wants. When there is conflict between the patient and family members, we need to find out where each is and how each sees the illness and the situation. Sometimes clergy or social workers can help reach consensus by clarifying the issues.
To gain access to these issues, I ask the patient such open-ended ques-tions as “What’s this like for you?” “What bothers you the most?” or even simply, “What do you want?”
To address end-of-life decisions before the moment of urgency strikes, I
say, “I hope you know by now that we can talk about anything. By that I mean, if you don’t understand what I have said to you or if you disagree with what I have recommended, you can feel comfortable saying that to me, and we can discuss it.” This statement provides the context for me to say next, “I could conceive of a situation where we might not be able to discuss it. Ei- ther you would be so ill that you might be unable to comprehend or you might be unconscious, and I would not want to do anything that you wouldn’t want me to do. For instance, if your heart would stop beating or if you would require machinery to keep you going, what would you want me to do?” If the patient is unable to be part of such a decision, I ask the same of the responsible person, substituting: “If your mother [or daughter, etc.] were able to speak for herself, what do you think she would want us to do?” That is far better than “What do you think we should do?” a question that places too great a burden on the surrogate.
For patients with illnesses in which the prospect of pain may be a sub-stantial concern, I address that issue specifically, if they have not, and as- sure them that “whatever pain you have can be managed and minimized.” I indicate that “I will not abandon you” by words and staying involved. I al- ways give them a new appointment to see or call me.
I ask, “Who are your resources? Who is your community? To what extent
is your religion or faith or philosophy of life a resource to you?”
If I am asked, “How much time do I have?” I answer the best way I know how. Not “three weeks” or “three to six months,” but rather, “I don’t know of any way to answer that question precisely. But you must know with this sort of illness that there are many uncertainties and that time is precious.” I believe that the question is often not one of numerical inquiry but rather a request for a discussion of prognosis. It is another opportunity to begin—or continue—a conversation about their understanding of the illness, fears, resources, relationships, expectations, and values.
I write letters of sympathy to survivors, and always, when appropriate, I include the statement, “You did all you possibly could.” I know that such losses are often followed by feelings of guilt: “If only I had recognized the significance of his chest pain. If only I had told him once more how much I cared.”
Though these case histories are about people with terminal illnesses, each provides insights into ways in which physicians can attend to the hu- man side of medicine for every patient. The lessons are universal. None in- volves complex technology. Good physicians see beyond the most obvious details. Each sentence in the story is but a “headline,” a clue to what is re- ally going on and what it is like for the patient and the family. Skilled physi- cians use their experience to inquire more completely and to provide more definitive care. For all of this, we need time, and the next chapter addresses that dimension of medicine.