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WHAT YOU SHOULD EXPECT FROM YOUR DOCTORS AND NURSES

Most patients and families want the physician to play a central role in end-of-life care. This chapter is intended to familiarize patients and families with what to expect of their physician in this respect and suggests some specific questions to ask.

HISTORICAL CONSTRAINTS ON DOCTORS

Be aware that doctors may be driven by traditional styles of practicing medicine, which can stand in the way of modern approaches to end-of-life care. When considering your expectations of what your doctor should be able to do for you, keep the following in mind.

First, watch out for a paternalistic approach that often characterized medical decision making in the past. Back then, the doctor’s word was law, and he simply told the patient and family what to do. His pronouncement was usually accepted without dissent, and patients ceded their rights to the physician and the system. In recent decades, this approach has been replaced by shared decision making in which patients’ and families’ wishes are regarded as highly important to patient care. This is a tremendous improvement, but unfortunately there are still instances in which the patient and family are not properly involved in charting the course of treatment—a holdover from the past.

Second, the Hippocratic oath has for generations caused physicians to mishandle one of the most important aspects of patient care—the treatment of pain. The oath was interpreted to admonish physicians never to cause harm by giving too much pain medication. This meant that many patients had far too little. Modern interpretation of the Hippocratic oath, however, has been slowly changing through a difficult process of education. Physicians have realized that sometimes very large doses of pain medication need to be utilized in order to control intolerable pain—doses that can depress respirations, such that life is shortened by hours or a few days.

Flora was a patient of mine years ago who had metastatic breast cancer that had spread to the bone. This was in the early days of chemotherapy, when we did not have very good ways of dealing with recurrent disease. Surgery, radiation, and attempts at chemotherapy had failed. No other treatment had any prospect of significantly changing the course of the disease, and comfort care was left as the only reasonable choice.

Unfortunately, the amounts of morphine necessary to control pain (by then severe) kept escalating. I felt we needed to give more, but my medical and surgical colleagues, who were participating in her care, felt that it would be too dangerous. “We might cause the patient to have depressed respirations that would shorten life, or she might become addicted.” I gave in and stayed with “safe” amounts of morphine. I was not experienced enough then to defy advice from older colleagues, although I do remember feeling terribly upset that we were not controlling Flora’s pain. We clearly undertreated her.

I am sure there were others who also had insufficiently treated pain, but Flora stands out in my mind to this day as having suffered through a bad death. The Hippocratic oath, strictly interpreted, had won out, and the patient had lost. To this day I have persistent regret about how she was handled. It was a defining time in my career, and I wish somehow Flora could know that—but at the time we just didn’t know any better. Fortunately, this is something that now happens much less frequently. We have learned a lot about pain management. The amount of medication necessary for the welfare of the patient has become the guiding principle.

The third constraining historical point that has stood in the way of proper comfort care is that, until the past couple of decades, students in medical school and young doctors in training programs were taught for the most part to strive always to try to cure patients. Comfort care only was not seen as a valid medical decision. Fortunately, this also has changed, and students and residents are now being taught comfort care as a defined strategy in end-of-life management.

With these thoughts in mind, what can you reasonably expect from your doctors?

QUESTIONS TO ASK

If you have been diagnosed with a serious, life-threatening illness, here are some questions you would do well to ask your doctor at the outset. They may help to organize your thinking about what is ahead, how you will cope with the future, and how helpful your doctor will or will not be once the goal of treatment changes to comfort care only.

What is the nature of my illness, my prognosis, and my life expectancy?

Your physician should be proactive in initiating discussions about the dying process and what it entails for the individual patient so that you are fully informed and supported. You may not feel comfortable bringing up subjects related to dying and end-of- life care, so the physician should take the lead in discussing the problems. If not, you should bring it up. The patient and family need to do their part to open the doors to frank exchanges of information and thoughts with their doctor, even if it is not forthcoming. Good communication is the responsibility of both sides, and once the subjects are initially broached, they are then much more easily discussed.

You should expect your doctor to give you the facts. There are a few people who prefer not to know the details of their illness, but most of us do. It is much easier to cope with things when you know the facts. From the physician’s point of view, I have found that it is much easier for the doctor to advise and deal with a patient who is totally informed. It may be difficult at the outset, but getting the facts straight will help in the long run.

All options for treatment and symptom alleviation need to be explained to you along with side effects, risks, financial costs, and probabilities of success, and the prognosis must be made clear. This needs to be a very straightforward discussion that is direct and understood. You need truly to understand your options, and the doctor also needs to be satisfied that you understand. Two examples of wives not being psychologically prepared for the death of their husbands indicate how upsetting the lack of factual understanding can be.

The first instance occurred in the emergency room of a community hospital. I was the internist on call for the weekend when an elderly man vomiting blood came in with his distraught wife. I had never seen him before, and his own doctors were in another nearby community. Nevertheless, it was clear he had terminal cancer of the esophagus, and, to me, the acute and profuse bleeding seemed to be a relatively easy way for him to die. We were not going to be able to stop the bleeding. He was already in shock and poorly responsive but not suffering. However, his wife was astounded and emotionally crushed when I told her he was close to dying. She was totally unprepared for this. It was clear that he, too, had not come to grips with the situation and had not said his goodbyes to his wife. In order to give them time to understand what was happening, I transfused him with three pints of blood, giving them a few more hours. It was incredibly upsetting for the wife and the patient alike.

The second instance was a couple who were patients of one of my medical colleagues. I knew the wife as a casual friend, and her husband had terminal cancer. On Friday afternoon her husband’s physician and I discussed the likelihood that he would die over the weekend from his disease so I made an elective house call that night to get thoroughly acquainted with the current situation and to be better able to care for him in his dying moments. After I had examined him, I asked his wife to tell me what she had learned from my colleague about her husband’s condition. She was oblivious to his pending death and was appalled at the fact he might die that weekend. I had to spend two hours that evening bringing her up to speed with events. I am convinced her own doctor had told her, but like so many people in that situation, she had not heard him. It was a failure of communication.

Will you interpret for me what other specialists advise?

This is part of being informed about the facts. You need to understand what the various doctors on your team are thinking and proposing. Ask your family doctor to translate their advice into language you understand. Your doctor needs to be the interface between you and the various specialists who may be participating in your care. All decisions about your care should come through your family doctor so that there is one leader to whom you and your family may turn. This is as true for comfort care as it was for earlier phases of aggressive attempts to improve or cure.

Patients are often bewildered by the complexities of the health care system, and they need a clear-cut leader and interpreter. A physician who is a decisive leader is not reverting to paternalism. (Atul Gawande, a younger doctor who recently went through his medical training at one of the teaching centers in Boston, wondered whether doctors should be more forceful in advising patients about what is the best path for them to take in problem situations. He said, “[As] the field grows ever more complex and technological, the real task isn’t to banish paternalism; the real task is to preserve kindness.”)¹

Will you be there for me? Will you continue to play a leading role in my care no matter what the setting (home, hospice facility, nursing home, hospital)?

This is an important thing to expect from your doctor—the assurance that he or she will be there for you. It is important to bring this up as early as possible. Fear of abandonment is a common feeling in dying persons. What a patient needs to hear is, “You won’t be alone. I’ll be here often and whenever needed.” As a person approaches dying, physician presence is psychologically essential. Even when there is no real change in the needs of the patient, a regular visit by the doctor is calming.

This fear of abandonment can be very real as patients are referred by the attending physician to other doctors who may take over a large segment of the patient’s care because of their specialty status (such as the oncologist), or as patients are referred to nursing homes, hospice units, the visiting nurse association, and various other community agencies. “Strangers” may begin to take over their care. “Where is my doctor? I don’t see him anymore!” No matter how good hospice workers or other specialists are, they begin as strangers, and this can feel like abandonment. The patient and the doctor need to talk about this very early in the illness and be clear about the doctor’s role.

The physician should not tend to withdraw as death approaches. Unfortunately, this does occur at times, not as an overt rejection of the patient and the situation, but rather a handing off of responsibility to nurses, hospice, or other caregivers as the challenges of trying to restore health wane. The subconscious feeling by the physician may be that now others can handle the situation for most problems that arise in comfort care, but this is not the case. Not only does the physician have the best expertise to cope with the various symptoms of dying, but psychologically his or her continued and frequent presence is invaluable in making the patient feel as peaceful as possible. The laying on of hands and understanding support by the physician continues to be an essential ingredient of successful end-of-life care.

I had a wonderful friend, John, who lived not far from me and who never consulted doctors. In his early seventies, he developed bladder outlet obstruction due to prostate cancer. He had increasing trouble passing his urine and realized he had to have the help of a physician, so he asked me to be his doctor. I was honored to be asked and agreed readily. Unfortunately, his cancer was far advanced, and there were few options for treatment.

John was a man who was fascinated by how things worked, so when I gave him hormone treatment for his prostate cancer (the only feasible option), temporarily relieving his bladder outlet obstruction, he was profoundly grateful. For a few months, the hormones shrank the prostate cancer, and he was able to urinate almost normally. One day as I was passing his house in my automobile, he saw me and hailed me down. He told me to get out of the car, at which point he thanked me profusely and kissed me on both cheeks in the middle of the road.

Unfortunately, when the temporary effect of the hormone treatment wore off, we had no further treatment to offer other than comfort care. Just as these things were happening, I quit my private practice after almost thirty years to move to another job within the profession. I hated to leave John in his terminal illness, but I arranged for a colleague to assume his care, someone I thought would do a good job, and I assured John that I would continue to follow his situation as a friend. As it turned out, however, the new doctor did not make house calls and also tended to delegate his responsibilities to the home care nurse. As a result, as John needed more medical attention, he continued to call me for help. I would go to his home, assess what was going on, and then telephone the new doctor to suggest some move. The other physician was always glad to get a suggestion and would almost always implement it—but he never himself came to the bedside to give the patient the feeling that he, the doctor, was there for John, the patient. This distressed me a great deal, so I continued to follow the patient closely until the time of his death at home. I did not do anything curative, but I let him know a doctor cared and was trying to make him more comfortable. That alone was sufficient to make his death somewhat more peaceful.

A physician has a tremendous responsibility to make patients feel that they are cared for in the best way possible, which at the end of life means making them as comfortable as possible psychologically, looking after the details of physical comfort and pain relief, and in general following them closely and personally with compassion for their plight. Above all, a physician must not allow patients to feel a lack of full attention and support. Without that support, suffering is always magnified.

You need to have a doctor who will honor these responsibilities. If you do not, try to do something about it. Either get your doctor to understand your needs by direct discussion, or, if this does not work, ask for a referral to another doctor. You can also ask other doctor friends you may have, talk with other specialists you may have met during your illness, talk with the local hospice or hospital officials, consult the local district medical society, or ask a medical social worker.

Will you respect my wishes as expressed in my living will, and ask others to do the same?

Not making sure of this point was the big mistake I made in the case of my mother’s doctor and the pacemaker decision. Don’t neglect to ask this in a point-blank manner.

The physician must make every reasonable effort to comply with the wishes of a patient’s advance directive (or with the instructions of a properly designated health care agent if the patient is not competent to participate in medical decision making). If the doctor is unable to do so because of personal beliefs, the doctor has the responsibility to assist the patient in finding a physician who will do so.

Will you communicate freely about my problems with my family and me?

Sometimes, patients do not want anyone to know details of their difficulties, even family, but most of us would like our families informed in appropriate detail. It is wise to ask your doctor about doing this and, at the same time, to give permission for it to be done and with which persons you designate. Be specific. If there is only one person whom you want to be your spokesperson, let the doctor know. This will preserve your privacy and also will keep your doctor from being besieged with numerous contacts from family members.

If the patient is able to communicate and understand, conversations between the doctor and the family should generally be held in the presence of the patient, which will reduce any sense of isolation felt by the patient. This is not always advisable, but most of the time it is.

What is your opinion of the best course?

I believe physicians should commit themselves as to what they think is the wisest course. Too often the doctor will present all the options (which is necessary and proper), but will not follow this up with a clear indication of which course of action in his or her opinion is best under the circumstances. It is not fair to patients to outline all the various options and then say “it is up to you.” Patients do make the final decision, but as part of deciding, they need to know what the doctor thinks is best. At times, the choices are 50/50 in terms of desirability, and the doctor can make this clear.

Will you help if there is a disagreement among family or consultants regarding the best course of action?

In interpreting the medical situation and the options open to you, your physician has a particularly important (and difficult) role to play when there is a disagreement among family or consultants as to the best thing to do. The choice of options may be influenced by religious, financial, social, medical, psychological, and probability factors—any of which can lead to difficult impasses. Sometimes the physician cannot successfully mediate in these discussions, and the courts may come into play. However, it has been my experience that almost always the physician can get an agreement between the parties if enough time is spent in careful and detailed discussion, and it is the doctor’s responsibility to attempt this. If the conflict is between the patient and the family, the doctor can explain and support the patient’s position. The patient should ask for this help when necessary.

What are my rights?

The physician has an obligation to discuss with you all the patient rights that were outlined in Chapter 2. Too often patients are not aware of their rights because they are insufficiently educated on the subject or they hesitate to raise such questions. The patient should ask the physician for open discussion about options and rights.

If I am suffering intolerably, will you talk with me about how death may be hastened?

Ask your doctor very specifically about what he or she is willing to do in the event you wish to hasten your death because of intolerable suffering. (This complicated topic is discussed in Chapter 7 through 9.) You should expect your doctor to be able to discuss these questions with you. If you are not satisfied with the answers you get, you always have the option to get another physician who is more empathetic to your wishes. Many patients hesitate to bring up such questions for fear of rejection or disapproval, but often patients are gratified by understanding responses from their doctor. You will never know if you do not ask.

WHAT YOU CAN EXPECT FROM THE NURSE IN END-OF-LIFE CARE

The nurse delivers an authoritative and comforting message to patients and families at the end of life. In recent decades, the nurse increasingly is the expert in assessing and managing medical treatment and partnering with the physician in these tasks. He or she often has frequent and prolonged contact with the patient, more so than the physician. This fosters the tendency of the patient to confide fears and ask questions of the nurse, who is in a position to set the tone for the end-of-life services offered to the patient.

Your physician and nurse should work together as a seamless team that allows the best use of each of their capabilities. I had the good fortune to work for a number of years in association with Ruth Porter, a nurse practitioner who had a large impact on the care of patients in our practice. She and I conferred multiple times daily about the needs of our patients and what should be done to meet those needs, and patients came to regard the two of us as a single entity to whom they could turn. Contacts with patients were often alternated between us, especially in chronically or terminally ill patients, and she seemed particularly expert and effective in dealing with the many kinds of discomfort that would plague patients. She was more easily able to spend the time necessary to investigate and follow up on the myriad details that make up effective comfort care and was an essential partner in caring for patients at the end of life. Between the two of us, we were able to provide this care regularly at home.

The nurse has this critical role to play, not only in private practices as Ruth Porter did with me, but also in visiting nurse associations, nursing homes, hospice organizations, the general hospital, and the intensive care unit. In all these settings, the nurse has a special ability to provide the patient with the sense of caring and compassion that is so needed at the end of life.

You can discuss with the nurse the type of nursing care available in these various settings for care that we discussed in Chapter 3 and 4 on comfort care, and at the same time inquire about the nurse’s willingness to support a hastened death if this were ever deemed desirable.

The need is clear for well-integrated teams of physicians and nurses that serve as the preferred model for delivery of medical care across the whole spectrum of health care, certainly including end-of-life care. Whether the nurse has the extra qualifications and training of a nurse practitioner and perhaps is acting as your primary health care provider, is a specialist in some arena of nursing or hospice care, or is a generalist, he or she can be a source of great comfort to you and your family in dealing with end-of-life issues. All the questions we discussed earlier in the chapter that might be asked of the physician can with equal benefit be asked of the nurse. The modern nurse plays a vastly more important role in the delivery of health care than in previous decades, and you can take advantage of this greatly changed role.

A FINAL THOUGHT ABOUT THE SYSTEM

As you discuss all the various questions and expectations with your caregivers, you may find that the medical system stands in the way. The delivery system for medical care in this country has been changing drastically in ways that are not necessarily conducive to the sort of personal interaction with doctors that we all want. We are often met with the pronouncement “that’s just the way the system works” and told that we have to accommodate to reality. This is true to some extent, but I believe this response should always be resisted. Patients and families can and should stand up for their rights and expect a medical care system that is personalized and tailored to the needs of the individual. Insisting on this can go a long way toward making it a reality and will increase the likelihood of a relatively peaceful dying.