3
THE FIRST TURNING POINT: FROM ACTIVE TREATMENT TO COMFORT CARE
WITHDRAWING UNWANTED TREATMENT, THE FIRST STEP
The first turning point, as we saw in Chapter 1, is that time in a dying patient’s illness when there is no reasonable expectation of a cure or of restoring health. Efforts now turn solely to providing the care that will keep the patient as comfortable and peaceful as possible through the dying process.
Stopping aggressive treatment aimed at curing the illness is the essential first step of comfort care. This decision can be difficult even when the patient and family realize the turning point has come and agree that comfort care only is the correct approach.
This was illustrated to me by Marie, a woman in her fifties who had cancer of the esophagus. She was a housewife who had raised a family of several children in a suburban town outside Boston and also held a part-time job in one of the retail stores near her home in order to help meet family expenses. Marie was a very hard worker who loved her family and life. Unfortunately, she had been a heavy smoker, and cancer developed in her esophagus—one of many areas where cancers can arise as a result of smoking. Marie had an initial surgery to remove what portions of the cancer could be removed, and then she received radiation. (This was many years ago, and there was no chemotherapy at that time that was thought to be helpful or advisable for that particular growth.)
Marie’s cancer recurred and began to block her ability to swallow. She regurgitated food and fluids, which she could not get past the obstruction in her upper esophagus. A small feeding tube was surgically placed through the abdominal wall into Marie’s stomach. Through this tube, she received liquid nourishment for a number of weeks during which time she swallowed nothing by mouth—thereby avoiding the obstruction. However, Marie continued to waste away due to the advancing cancer, and she became profoundly weak. Her body chemistry was abnormal. She began to speak very little and to sleep fitfully much of the time. Medications were necessary to control general distress and anxiety, and morphine seemed to work best.
In one of the last real conversations she had, Marie told me and the family, “I want to die, and I want the tube feedings to stop.” She said this at just about the time I would have said the same myself, were I in her position. Until then, she could interact with her family and friends to some extent, but now she could do so only with great effort. She had no enjoyment of any part of the day and was bedridden. Marie wanted to be freed from her ordeal and did not want further treatment other than comfort measures. This seemed to me and to Marie totally rational and appropriate, but it was difficult for the family to accept. However, after considerable discussion with the family, and with their approval, I removed the feeding tube, and from then on Marie had no more fluid administered by any route other than the tiny amount needed for intravenous administration of morphine. She quickly became dehydrated, which was not a distress to her in her somnolent condition. The continuous use of fairly large doses of morphine prevented her being aware of any distress. She died several days later, quietly and peacefully.
Marie’s tube feeding had become an unwanted treatment and an obstacle to a peaceful and natural death, and at her request it had been withdrawn. That alone sufficed to hasten the end of her suffering. Withdrawing treatment in this situation was accepted by the patient, family, and her caregivers—not happily or easily, but realistically and eventually without reservations.
The stopping of unwanted treatment stands out clearly as the first thing to do when the goal of treatment switches to comfort care only. There is absolutely no legal or ethical problem with this, although it is amazing how many people feel that it is somehow improper to stop a treatment that has already been started. That belief is wrong. There is no difference legally or ethically between stopping any sort of treatment and never having started it in the first place. This includes chemotherapy, surgery, radiation, hormone treatments, or other aggressive measures, plus such simple measures as intravenous fluids or liquid nutrition given through a feeding tube into the stomach.
The decision to withdraw treatment may be difficult psychologically, as well as emotionally. Because it is human nature to worry about stopping a treatment that one has previously had enough faith in to begin. However, if the first turning point has been taken in a formal way through discussions among patient, family, and doctors who agree that it is highly improbable health can be restored, and if the goals have been redefined, this option of stopping a previously initiated treatment should not present a problem psychologically.
WHAT IS IDEAL COMFORT CARE?
In the last decade, palliative (comfort) care has become a specialized form of care in that there is now a defined body of knowledge about what works best. It is something physicians and other caregivers have had to learn. When this knowledge and these skills are put to use, terminal patients in the great majority of instances can be kept comfortable.
Optimal comfort care means that the physician will exert meticulous care, attention to the smallest details, close and frequent follow-up, extreme compassion, and the best pain management (the latter is addressed in the next chapter in more detail). Comfort care means paying attention to a myriad of problems that can lead to distress or unease, whether physical or psychological in origin.1 Because this is now the caregivers’ principal obligation, all the emotional energy invested in seeking a cure can be directed to the patient’s immediate well-being in an all-inclusive approach—ideally with frequent visits from the physician and other support personnel. Although much of comfort care is common sense, specialized skills may be necessary, and the doctor or patient should not hesitate to ask for whatever consultations are necessary, especially in the area of pain control.
Comfort care does not imply less attention from the doctor. There is an unfortunate tendency on the part of some physicians for this to happen, since, after the first turning point, the more dramatic and appealing attempt to cure the disease is put aside. When this is done, a few physicians are let down when the patient and family decide to abandon attempts to cure, and may tend to “let the nurse or hospice take care of it.” Comfort care cannot be regarded as simply something to be done in the absence of more worthy goals.
In my own practice, I was able to give this care personally, whether in the office, hospital, or home—and the location and frequency of visits with the dying patient were my choice. These days you may find it difficult to get the personalized attention from your physician that you desire. There are a number of factors causing this to be true: the highly specialized nature of much of our medical care now, insurance considerations, and the great pressures on physicians to see more patients per day. All work against having your doctor attend you as frequently as you would like, especially at home. Most doctors do not make house calls and the physician consequently delegates more of the care at the end of life to either the nurse or hospice worker. That is a reality I accept but not one with which I agree. Strong advocacy for your needs may solve this to some extent but, most likely, not completely.
To ensure meticulous comfort care, you should consider engaging the services of the hospice movement, which can be extremely important in translating the change in goals into reality. Almost all dying patients can benefit by the involvement of hospice experts. To get the full benefit of the hospice approach, they should be consulted early, as soon as the turning point has been reached and goals have changed. Hospice is discussed in more detail later in this chapter.
UNDERSTANDING WHAT SYMPTOMS ARE PART OF THE DYING PROCESS
Patients and families need to understand that some happenings are part of the dying process so that the patient who is receiving comfort care is not pushed to fight fruitlessly against symptoms that need to be accepted. Avoiding food, not taking in much fluid, subsequent dehydration, extreme lethargy, sleeping a lot, and the inability to get out of bed are all prime examples of symptoms that naturally occur in the dying process and should not be fought by family, caregivers, or the patient.
I have frequently seen families of dying patients struggle vainly to get the patient to eat more so “you can keep your strength up” or to urge the patient that he must get out of bed because “you will lose your strength.” These are useless exhortations for the dying patient and serve only to make the situation more stressful. Acceptance of these symptoms as a normal happening will allow a more peaceful death.
This does not mean that all symptoms that go along with the dying process should simply be accepted—far from it. Many things can happen that can successfully be treated and relieved, while not prolonging dying. For example, breathlessness can be due to a variety of causes, and the symptom is usually treatable. If the underlying cause is not remediable, the symptom itself can be dealt with by morphine, an excellent agent for suppressing the feelings of shortness of breath. Anxiety and panic feelings are often present, and these are clearly responsive to anti-anxiety medications that are quite specific for these particular symptoms. And, as we see in the next chapter, pain is definitely in this category of treatable symptoms.
Drs. R. Sean Morrison and Diane Meier at Mount Sinai School of Medicine in New York City recently wrote an excellent summary of symptom control at the end of life, referring to nausea, constipation, depression, anxiety, shortness of breath, and pain—all being symptoms that mandate the attention of the physician and other caregivers.2 The bottom line is to accept the first category of symptoms in the dying patient (lethargy, weakness, no appetite, weight loss, and others), as noted previously, but to aggressively address the remediable forms of distress, as described by Morrison and Meier. Discuss with your doctor which is which.
THE LITTLE THINGS ARE ALSO IMPORTANT WHEN ONE IS DYING
Sometimes even the smallest details can be an upsetting problem for the patient, as I experienced recently.
My oldest brother, Bob, died with prostate cancer at age eighty-five in North Carolina only a few weeks before I wrote this chapter. He had this disease for about ten years and was originally treated with radiation. Several years ago, the cancer recurred, and his physicians started him on hormone therapy. Surgery for increasing bladder outlet obstruction by the cancer growth was not a feasible option because of the previous radiation in the area, and some months before his death, he required the insertion of a permanent catheter into the bladder to allow proper urine flow. He began to lose weight rather markedly and felt weak and unsteady, such that he was transferred to the nursing facility of the retirement community in which he and his wife lived. Several weeks before he died, he had a blood transfusion to help correct the severe anemia the cancer had caused, a move that helped his energy level temporarily, but did not alter the basic problem. He made the transfusion decision because there were still a few things he had to do. However, life became distressing not long after that, and Bob appropriately came to the conclusion that he wanted to end his steadily deteriorating state and was ready to die.
I visited him from Massachusetts to say goodbye and to help him formulate an agreed-upon plan for his dying. He had signed a document designating his wife as medical proxy to make decisions for him at a time when he no longer could do so. However, he had not worked out in his own mind a set of clear-cut goals and guidelines except that he and his family knew that they did not want the process to be prolonged.
The day I arrived I was able to talk with Bob while he was still lucid and capable of making decisions. The next day I drew up—with the help of his wife and daughter—a written statement of instructions for his doctors and other caregivers, a statement that set forth the specific wishes that would in his individual case prevent any unnecessary prolongation of his life. This would be an addendum to his previously signed medical proxy document.
The next morning I went over this written version of what we discussed the day before. I read each statement to him and asked, “Is this correct, is this what you want?” For every instruction he said, “Yes.” The previous day he had been able to sign a business document, but that day he was no longer able to produce a signature. His wife, who had power as his medical agent, signed for him—and we gave the letter of instructions to his doctors and the staff of the nursing facility.
Bob’s document stated that the goal of treatment was to assist him through the dying process with as much comfort as possible. Here is Bob’s actual list:
- Nothing is to be done that will prolong the dying process.
- No further transfusions are to be given.
- In the event of cardiorespiratory collapse, no CPR, respirator, or other resuscitative measures are to be used.
- No antibiotics are to be administered for urinary tract infection, pneumonia, or any other infection.
- No intravenous fluids are to be given other than the tiny amounts that might be necessary to deliver sedating or pain relieving medications.
- If dehydration occurs, it is not to be treated by administration of fluids via any route unless I request water to drink, but I am not to be urged to drink fluids.
- No nasogastric tube is to be used.
(When patients are dying, they do not want to eat and the desire for fluids becomes minimal or nonexistent. The patient usually will become dehydrated, and this shortens the dying process, usually a good thing. The matter of terminal dehydration is discussed in detail in the chapter on hastening death.) - Pain or any other form of distress or agitation is to be treated with medication in sufficient doses to relieve the symptoms, even if the dose required might shorten life. If pain or sedating medicines in intermediate categories do not relieve symptoms of distress or agitation, stronger drugs, such as morphine, are to be used.
(Addiction is not a consideration in this situation.) - There is to be no chemotherapy.
(This was highly unlikely, in his situation, to have any significant beneficial effect, but, more importantly, Bob said, “I am tired, and I want this ordeal over.”) - No transfer to hospital is to be made. Dying in the nursing home is expected and transfer to a hospital is not an option unless essential for control of symptoms.
(We tried to be certain the nurses and aides realized that Bob’s dying was not a failure of their care, but rather the desired happening.) - There is no need for me to get out of bed or sit up if I do not wish to do so.
- No laboratory tests, x-rays, or vital signs are to be done.
It seemed we had covered everything. There was certainly nothing in the written statement that was controversial, either ethically or legally, and his personalized requests were things commonly found or implied in standard living wills. My brother, his wife and family, the doctor involved in his care, and the nursing supervisor were all perfectly agreeable to the stipulations.
However, one thing interfered with the execution of the plan—a holdover attitude of the nursing staff, stemming from years of habit that seemed to presume we were still attempting to restore a healthier state and to preserve life. Although they wanted to cooperate and in theory agreed with our approach of shepherding Bob through the dying process as easily as possible, in carrying out the details they sometimes reverted, subconsciously I am sure, to the restoration mode. They were giving devoted, conscientious care, trying their best to do what was right, but it was hard to get away from the goal of trying to make Bob better and to change instead to the goal of assisting him in his dying. For example, the staff continued to take Bob’s blood pressure regularly, even though the pressure of the pumped-up cuff was very bothersome to him. The staff took rectal temperatures when oral ones became inaccurate, and that was upsetting. Bob’s children had to remind each shift of nurses to have all vital sign measurements discontinued. Hospice personnel put into place a nasal catheter for oxygen, in spite of the absence of shortness of breath, and Bob’s son had to ask incredulously what they were doing (the instruction for oxygen had been on the routine hospice order sheet). It was discontinued. With regard to water, the nurses continued from time to time to urge Bob to drink, until reminded by his children that they were to give Bob water only at his request.
These upsetting details may seem small, but they were significant. It seemed clear to me that as a generality a lot of education was still needed in order to get caregivers (not just Bob’s, but caregivers in all similar situations) to support fully and effectively in all ways the patient’s wish not to prolong the dying process. I had seen this situation play out many times in my practice, and here it was again in a death in my own family—unintentional, but nevertheless very real. Although it is not easy to do, the underlying approach of all caregivers must change when the turning point has been reached. Until that happens, the family has to remain continuously vigilant to ensure that the patient’s wishes are carried out, and the family must advocate for the patient to the very end.
The statement of detailed instructions we developed for Bob (or something similar to it) could be used by any person facing the end of life, either as an optional attachment to the medical proxy document when it is originally signed by the patient—or as a last minute addendum to the proxy statement during the dying process. To ensure that dying will be in accordance with the patient’s wishes, I think every dying patient and his or her family should consider drawing up detailed instructions for the final days or week—including the routine matters of care that so bothered my brother as he was dying. The standard living will often does not spell out the details of desired care at the very end.
SETTINGS FOR COMFORT CARE
Delivering proper comfort care and adhering to the wishes of the patient are most easily accomplished when care is delivered in the simplest setting possible—the home.3 Here, the patient is usually surrounded only by persons who are aware of the goal of care and have signed on to the new guidelines. There are not large numbers of people who must be educated about the situation and instructed repeatedly as to what should or should not be done. Everyone knows and is supportive. The same can be said of a patient who is under hospice care at home where the methods and goals of care are agreed upon and unambiguous.
Many times, however, care for one reason or another cannot be delivered at home, and some other institution is required, such as a hospice facility or a nursing home. If the patient has been transferred to a hospice residential facility, there is no problem outlining and sticking to a plan of comfort care only; hospice workers are clearly and expertly trained in these matters. A nursing home may be a problem, however. Here there are many more people involved in giving care, and at each shift change, the staff needs to be instructed. The nursing director, the nurse in charge of each shift, other staff nurses or aides who will be interacting with the patient must all be informed and educated about the goals.
This difficulty is further compounded when it is necessary to have the patient hospitalized for symptom relief. Here the number of caregivers is far higher, and new doctors enter the picture, which can lead to undesired results. This was underscored for me a few years ago when the first turning point to comfort care was taken too late.
Upstairs in the bedroom of her vacation cottage, Nancy heard a loud explosion from below. Racing down to the first floor, she saw her husband Stephen staggering up the stairs from the basement with his clothes ablaze. Stephen had gone to the basement to relight the pilot of the hot water heater. Racing back to the bedroom, Nancy grabbed a bedspread, threw it around Stephen, and rolled him onto the floor to put out the flames. Stephen’s nylon jacket had melted across his back, and his hands, face, and neck were badly burned.
“Shut off the gas!” Stephen managed to blurt out despite his excruciating pain. As Nancy did this, she saw that one of the joists in the basement had caught fire. She was able to put the fire out with an extinguisher that was fortunately nearby.
Stephen needed help and right away. Nancy ran to the phone only to find that it was dead. Later, they discovered the telephone wire had been burned through. This was 1978, before the era of cell phones, and Nancy’s only option was to leave Stephen and drive to the neighbor’s house for help. Luckily they were home.
As the emergency unfolded, I was notified of the accident since both Stephen and Nancy were my patients. I left the office immediately and met them at the local hospital. At about the same time, word reached Stephen and Nancy’s grown daughter, Susan. In her late twenties, Susan was married and raising children of her own. In addition to her parents, I knew Susan very well, too. On hearing the news of her father’s accident, Susan also headed for the hospital.
We all arrived simultaneously at the emergency room of the local hospital. The emergency room doctors quickly determined that Stephen had third-degree burns over large areas of his body. Everyone recognized that his injuries were too severe for the capabilities of the local hospital so Stephen was immediately transferred to one of the teaching hospitals in Boston twenty miles away, where he would receive the best, latest, and most sophisticated care possible in their intensive care burn unit. Stephen, in his seventies, was a retired tree surgeon and still remarkably fit physically, and it seemed clear to all that everything possible should be done to try to help him recover from this terrible injury.
Some twenty-four years later while writing this book, I interviewed Susan in the backyard of her home. Together, we reflected on what happened to her father during six months of intensive care treatment. Stephen was obviously very sick when he arrived in the burn unit, but Susan remembered that initially he was talking coherently. Describing her father’s arrival, Susan said: “Initially he seemed in fairly good shape. He was able to joke with the nurses, ‘If I had known you weren’t going to give me lunch, I would have brought a sandwich.’”
“That burn unit was incredible. All they do for those patients!” Susan recalled that the doctor in charge was at the top of his field, providing the most advanced approaches to burn care. The resources available to her father were great in depth and sophistication, representing truly the very best care that could be found anywhere. The burn unit team brought all their expertise to bear with multiple surgical procedures over many weeks to try to repair Stephen’s massive physical injuries. The procedures included surgical removal of burned tissue, and skin grafts to cover the third-degree burns of his hands, face, neck, and back. He received meticulous care to control the ever present susceptibility to infection, intravenous feedings with special nutrients, and a panoply of supportive measures. The doctors were hopeful that Stephen could be restored to a reasonably normal state so their efforts were maximal in every way. The family was awed by and grateful for all the doctors were doing. As Stephen’s primary care doctor, I recall feeling the same way.
Unfortunately, Stephen’s initial responsiveness did not last long. Within two days after admission, Susan remembered, “He did not talk much anymore, and all he would do was look around. The last thing he said to us was on the second day there. ‘That Jell-O didn’t taste very good.’”
Stephen’s initial skin grafts had some success, but they never were successful on his back; he began to have a series of complications. He developed pneumonia, not an unusual thing in critically ill patients. During the second anesthesia in the operating room, as the doctors pursued the grafting attempts, Stephen had a cardiac arrest from which he was resuscitated. “After the cardiac arrest, he became less and less responsive. The doctors said he had had oxygen loss to the brain.” The explosion in which Stephen was burned had occurred in May, but by now the days had led into weeks, and the weeks into months. The summer came and went.
Eventually, Stephen’s kidneys began to fail. He was appearing less and less likely to survive the ordeal, and, even if he did, he probably wouldn’t regain any sort of productive life. “In June and July we were still hopeful, but by August we no longer had hope. Still, the doctors wanted to operate more.” Susan and Nancy began to feel the first stirrings of misgiving.
“My father was a very active man, very energetic. We wondered if he would ever be able to talk again, but the doctors said they did not know. What loomed ahead didn’t seem to be the kind of life he would want. He had been adamant about the living will, which both he and my mother had signed. It said clearly he didn’t want what seemed to be happening to him. He and my mother were proud of having living wills. In those days, not many people had them. Over the course of several weeks, my mother began reminding the doctors of my father’s living will, saying that he didn’t want his life prolonged senselessly. But each time the doctors said ‘All hope is not gone, not yet.’”
“It was a fight, to let him have some peace. My mother said it was the hardest thing she ever did in life, to get the doctors to follow his living will.”
During another trip to the operating room for further surgery under anesthesia, Stephen had a second cardiac arrest. After that he was on a pulmonary resuscitator that breathed for him with a tube into his trachea. Stephen had a tube through the abdominal wall into his stomach, through which he received liquid food and nutrients. He had a tube into the bladder to drain his urine so his bladder would not become distended. And there were intravenous lines in place for fluids and various medications. Stephen’s liver function by now had also deteriorated. His bone marrow production of blood cells was failing, and he became anemic. Mentally, Stephen was essentially nonresponsive.
Nancy’s upset and anger gradually grew as the hopelessness of the situation became more evident. Acutely aware of the situation, I asked Nancy and Susan to come into my medical office in Concord, Massachusetts, to discuss what could be done. They readily agreed.
I told them I thought the burn team had become so emotionally invested in Stephen’s treatment that they were unable to see how poor his prospects were. Bent on rescuing Stephen, the team was unable to allow him to die in peace. Nancy and Susan completely agreed. This was 1978 when few doctors recognized that there are situations in which the patient is better served by pulling back heroic restorative efforts and turning one’s energies, instead, to shepherding the patient through the dying process with comfort care only.
I telephoned the hospital physician leading Stephen’s team and told him our conclusions. “The best way out of the situation,” I suggested as tactfully as I could, “might be to transfer Stephen back to my care at our community hospital, where I could allow him to die with comfort care measures only.” There was an uncomfortably long silence on the phone. It probably only lasted ten or fifteen seconds, but it seemed an eternity.
Finally the physician on the other end said in a subdued voice, “I think you’re right. I’ll arrange to transfer him.”
The next day, Stephen was brought by ambulance to our community hospital in Concord. Years later, as Susan and I reminisced, she told me of his leaving the burn unit. “The nurses were preparing him for transfer. One of them leaned over and gave him a kiss. She said, ‘Stephen, you are going home to Concord.’ He then amazed us by clearly saying, ‘Thank you very much.’ We could not believe it, but three people heard him.” Stephen had said nothing for months, but clearly must have had some degree of awareness.
I briefed the nurses at the hospital in Concord ahead of time so there was a clear-cut understanding of our plan and responsibility—to allow Stephen to die without any further distress. All tubes were removed other than his bladder catheter (for comfort), and all medications were stopped other than morphine, which we used in liberal doses to control restlessness and pain. Stephen was unresponsive and remained so until he died two days later, on May 28—six months after he had been admitted to intensive care. His family remained at his bedside, and they were grateful that the ordeal was over. It was an abrupt ending to months of aggressive care, but the family and I were certain we had done the right thing. Relief was an important feeling in us all.
My phone call to the doctor treating Stephen at the burn unit marked the first turning point in his dying, the point at which the goal of the treatment changed from heroic efforts to restore his health to shepherding him through the dying process. In this instance, the change in treatment goals came too far down the intensive care road. Looking at things retrospectively years later, the turning point should have come much earlier. But this was more than two decades ago, and relentless intensive treatment was the norm then. Now, we would have addressed whether or not Stephen had reached the first turning point in a formal way at a much earlier point in his final illness. We would have found the probabilities of his recovering a reasonable life too small and would have made the decision to withdraw aggressive treatment weeks earlier, and a new, more appropriate setting for care would have been chosen.
Looking back on her father’s turning point, Susan says, “If you know what you believe in, you have to stand up for it.” Asked if she had the experience to live over again, what she would have done differently, Susan reflected, “I would have insisted on better communication with the doctors caring for him.” Stephen’s case was for all of us a learning experience in the days in which end-of-life care was beginning to change in many ways, and for me personally it clearly marked a change in how I looked at the problems of hopelessly ill patients.
The setting in which end-of-life care is rendered influences not only the degree to which the patient and family can maintain control, it also influences the quality of comfort care the patient receives. A study from Brown Medical School in 2004 indicated that care at home or in a hospice setting was more likely to be of higher quality with respect to “symptom amelioration, physician communication, emotional support, and being treated with respect.”4 All of these aspects of comfort care were of lower quality in patients who died in institutions.
Elizabeth’s story illustrates a death that occurred in the appropriate and best setting after the turning point to comfort care was properly recognized and implemented.
Elizabeth, a patient of mine, was a gracious, elegant woman who had raised two daughters with her husband, Robert, a schoolteacher. In her early fifties, Elizabeth was diagnosed with ovarian cancer. She first had surgery to remove as much of the tumor as possible, but, because the cancer had spread to her pelvis and abdomen, it could not be removed completely without damaging vital organs. During the following year, she had chemotherapy given in pulses of treatment every few weeks. After each bout of chemotherapy, Elizabeth had nausea, vomiting, and an increase in her overall distress. With time, even between chemotherapy sessions, she had increased abdominal pain and general weakness.
Elizabeth put up a valiant fight. As her condition worsened because of the advancing cancer and the side effects of chemotherapy, she eventually became housebound. Still, she pushed herself to make the burdensome trips to see the oncologist. Robert and their daughters also encouraged Elizabeth to keep up the fight: to get out of bed every day, drink and eat to maintain her strength, and walk regularly so that she did not become moribund.
Eventually, it became apparent that Elizabeth’s cancer was aggressive and overtaking her despite everything she and we did. In my regular house calls, I could see that Elizabeth was exhausted. She no longer had the energy to get out of bed, eat, or walk. Tension was developing within the family as her husband and daughters tried to do what they thought was best—pushing her to do activities that she no longer had the energy for. Her devoted family feared they were “failing” as they watched Elizabeth lose weight and require larger doses of morphine for abdominal pain.
One day I decided to intervene and said to Elizabeth in a gentle but direct way, “It seems to me that you, your family, and the oncologist are doing everything humanly possible, but the cancer is unstoppable.”
“I’m exhausted,” said Elizabeth. “I can’t push myself any further. I can’t go on.”
In these situations, I think it is usually possible to deliver comforting news along with the bad: “We can make you very comfortable. We can arrange hospice care here in your home. You could have intravenous morphine that can be dialed up at will for pain relief.”
“I’d like that,” said Elizabeth with obvious relief. “I’d like that very much. I just want to die in peace.”
Over the course of the next few days, I had several conversations with Elizabeth, Robert, and their two grown daughters at Elizabeth’s bedside. (It is important not to have these conversations “behind the patient’s back,” but instead with all family members together, including the patient if he or she is able to participate in medical decision making.) Elizabeth made it clear that she felt further efforts to stop the cancer did not have a high enough chance of success to be worth the price she was paying in side effects. After the initial shock, everyone in the family embraced the idea of taking the turning point, of switching the focus of Elizabeth’s treatment from attempts to fight the cancer to comfort care to ease her dying process in the simplest setting possible—her home.
Robert and Elizabeth’s daughters were supportive of her wishes and wholly committed to caring for her at home. They set to work turning the dining room into a downstairs bedroom for Elizabeth. All of the dining room furniture was moved out and a hospital bed was moved in, along with many of Elizabeth’s personal effects and favorite pieces of furniture.
Hospice was engaged. Hospice workers have immeasurable experience ministering to the physical and psychological needs of dying patients and their families, and they were a big help to us. Hospice is committed neither to hastening death nor prolonging dying. Their workers enter the scene when the prognosis has become hopeless, and the patient is clearly dying. They have tremendous expertise in pain management, and they were immediately helpful in supervising the intravenous line that had been put in place for administering morphine.
As Elizabeth’s primary care doctor, I took over her care from her oncologist. I visited her regularly and worked closely with the nurses who saw her daily and with the hospice personnel. Elizabeth and her family learned how to control the steady infusion of morphine to keep her pain free. Robert and her daughters stopped urging Elizabeth to pursue activities like eating, drinking, and moving about, which she no longer wanted to do. Everyone accepted the inevitability of Elizabeth’s approaching death. We were at ease because, at the turning point, all had agreed upon a redefinition of the goal of Elizabeth’s care. No one was striving any longer for the unlikely or the impossible.
I explained to the family that Elizabeth’s lack of interest in food or drink was a normal part of the dying process. So, too, was her somnolence and diminished responsiveness with the increasing doses of morphine. When Elizabeth was alert enough to converse, there would often be comforting reminiscences of times past and reassurances about what the family would do when she died. Although Robert and their daughters were immensely sad to watch Elizabeth slipping away, they valued the peacefulness that came over her with the change in treatment focus.
Toward the end, I visited more frequently to remind the family that they were doing the right thing and to assure Elizabeth that I would be there for her regularly to help with whatever came up. What families need at these times are support and reassurance and, especially, recognition of the pain they are suffering and the selflessness of their efforts on behalf of their dying loved one.
Elizabeth died peacefully in her home, surrounded by her family, three weeks after taking the turning point. Her death was in many ways the ideal in these circumstances. Her family was satisfied that they had done the right thing and were happy that they had participated in her dying at home. Most importantly, Elizabeth, her family, the nurses, the hospice personnel, and I—all of us—regarded her dying not as a failure to stop her cancer but as a success in shepherding her through the dying process with the least distress and most peacefulness possible. Most of us would prefer to be Elizabeth dying peacefully at home surrounded by family rather than my mother, Richard, or Stephen who were trapped in medical futility.
Morphine was a godsend to Elizabeth and is an age-old remedy used by doctors to ease death. In her case, the morphine probably did hasten her death by hours or days, but this consequence was acceptable to everyone concerned because it gave Elizabeth the pain relief she needed. (The issue of an earlier death in patients receiving large doses of morphine is discussed in detail in succeeding chapters.)
The bottom line is that end-of-life care is generally better when the patient is in a simple setting. We need to educate all caregivers—at home or in a nursing home—that death is expected to take place in such a setting and that transferring a patient to the hospital is not an option except under very special circumstances, such as to control unrelieved, intolerable symptoms. These exceptions should occur only when palliative services cannot be delivered in a simpler setting; in such cases, the warmth and intimacy of the patient’s home environment is sacrificed for technical expertise—a trade-off that sometimes is unavoidable. There are hospitals and nursing homes that have settings for dying that approach the peacefulness of a patient’s home, but they are rare. When these high-tech but peaceful settings exist, they are likely to be hospice-run.
Talk with your physician to find the setting that most closely meets your needs. Most people prefer to be at home, but that may involve family who are unable or not skilled enough to help. In that case, supplementary, skilled home care can be arranged through local social services or a nursing agency, as well as hospice. Staying at home successfully almost always involves getting sufficient help from these community services.
Some hospice programs involve a physical place to which the patient may be transferred, but many programs operate almost entirely within the patient’s home. Initially, they will evaluate the patient’s needs and then set up a plan that draws from their store of services: nurses, aides, pain control technicians, doctors, and social workers. If they do not have the in-house expertise, they will help to arrange for it and to supervise and integrate services.
When asked to join in the care of a patient, hospice can provide a tremendous amount, but none of this conflicts with other consultants or programs that might already be operating. If a practical nurse or other aide is necessary around the clock in the home, hospice will integrate their services into the overall picture. In all of my experience with hospice, I never stopped being the provider in charge, but hospice joined the effort as colleagues with a common goal. As you can tell, I am an advocate of the hospice movement.
Patients and families sometimes comment that if hospice is called, then all hope must be gone and the end must be close; they don’t want to make that admission. In practice, however, when hospice enters the situation, almost always there is a decrease in anxiety and an increase in comfort for the patient and the family. If health providers do not suggest a hospice referral when dying seems less than six months away, you should bring it up. There is further information about hospice in Appendix A.
Where to give comfort care is often a complex decision. The family and patient advocates need to ask, carefully, questions about what services are necessary, who can successfully deliver them in what setting, where the most control over the desired manner of dying can be exerted, and which setting will provide the most comfort and emotional support for the patient. This should be a formal discussion with the physician and is best done well ahead of time, when possible.
PROBABILITY, CERTAINTY, AND MEDICAL FUTILITY: IMPORTANT CONSIDERATIONS IN COMFORT CARE
The stories told in this chapter about Marie, my brother Bob, and Stephen address how the decision to render comfort care only was arrived at, and in each instance, questions of probability and medical futility were in the background as these decisions were made. Sometimes, it is clear that restoration of health is not possible, and this helps the patient and family to take the turning point. At other times, however, there is still some possibility of improvement, and the question then becomes how likely that possibility is.
The decision to make one more effort to restore a degree of health depends on the likelihood that the course being contemplated will have at least some success—that the effort and side effects will be worth it. How strong must the probability be to justify undertaking the action? There are many who would say that any chance of improvement is worth shooting for, while others would maintain they need a high probability of success before they are willing to undertake further treatment with side effects. And there are many variations in between. The basic personality of the individual and his or her approach to life certainly influences this decision.
How much suffering is likely to be incurred as a result of any new treatment is also a major factor. If the proposed treatment has little in the way of side effects and is relatively easy to initiate, then the patient may want to elect it even though the probability of its helping is low. On the other hand, if a treatment has considerable side effects, the patient may be reluctant to undertake it even though the probability of helping is moderate. It all depends on the individual and the circumstances.
In all cases, the most important thing is to address the options in a formal, deliberate meeting and discuss them in light of all available evidence and with all persons able to help the patient in the decision. Once a formal decision-making process has been undertaken, the appropriate choice usually emerges. This choice then be acknowledged by all, and the treatment goals modified accordingly.
The physician should give his or her best estimate as to the likelihood of treatment success and the downside of undesired effects. If he or she is not forthcoming with this information, you should press for an opinion, including substantiating evidence. The physician should always go through the exercise of explaining what he or she would do, while emphasizing that the final decision belongs to you. Then, you can take the physician’s opinion as another bit of evidence in making your own decision.
Certainty is always desired in medical decision making but seldom achieved in practice. The higher your need for certainty, the more difficult the outcome may be to achieve. To be very certain, you need a greater number of tests, interventions, and procedures, and this has its own very real price. At some point, you will have to forgo the need for high certainty and accept reasonable probability.
If you and your family carefully and formally consider probabilities and the degree of probability with which you are comfortable, then it is unlikely that your actions will degenerate into medical futility. This is the worst situation of all—when a patient pushes on with (or the family encourages) measures that are unlikely to help and at the same time cause further suffering. Doctors are increasingly and properly resisting the occasional demands from patients and families for continuation of medical care that seems to the caregivers to be futile. The Code of Medical Ethics of the American Medical Association, 1996–97, states: “Physicians are not ethically obligated to deliver care that, in their best professional judgment, will not have a reasonable chance of benefiting their patients. Patients should not be given treatments simply because they demand them.” (This does not mean that a young person determined to live who pushes for an experimental treatment is necessarily engaging in pursuit of futility. The point is that when there is no reasonable expectation of a good result, treatments aimed at cure or reversal of the process become futile.)
Careful and detailed communication among patients, families, and physicians—and the reliance on the degree of probability with which the patient is comfortable—will in most instances prevent the patient from going down a destructive and burdensome path of futility and will help ensure that decisions at the first turning point are thoughtfully made.