Futility at the Bedside: Futile Care versus Worth a Try

Dr. Leigh Turner,^1,2 in his articles in Annals of Long-Term Care: Clinical Care and Aging, states that consensus on how to mold end-of-life care has been elusive. On this question the legal, religious, cultural, and ethics community has no overarching, generally accepted guidelines or procedural directives “despite sustained efforts at crafting policies and legislation.” Dr. Turner discusses the persistent, divisive question of end-of-life care, especially futile care, care that does not benefit the patient but is at times requested for the patient. “Understandings of what constitutes ethical clinical practice in end-of-life care remain disputed terrain.” Fortunately, the lack of a universally agreed-upon protocol does not mean that at the bedside differences of philosophies and opinions always lead to unsatisfactory, confrontational situations. The trusted primary care physician, who is familiar with the dying patient as well as with the family, can often circumvent the conflict involving futility of care, care that does not influence the outcome of an illness. The acrimonious discussion among ethicists, which takes place on a theoretical and abstract level, may defy definitive rules for futile care, but at the bedside immediate differences of opinion can frequently be resolved. Dr. Turner mentions patients’ families as proponents of futile care. I assume he would agree that it is not always the family who request inappropriate treatment; physicians may also be the promoters of futile care, as the following case illustrates.

CASE 1

Martha* had been one of my favorite patients: gracious, intelligent, uncomplaining. I had known her for years. Recently she had developed increasing problems with heart failure. She was brought to the emergency room after she suffered a major stroke; a neighbor who checked on her regularly had found her unconscious and called 911. Close to her 86th birthday, she was intubated by the emergency room physician and was admitted to the intensive care unit (ICU). I was made aware of her admission by her son, a retired English professor, who had been notified of his mother’s illness by her neighbor. We met in the ICU where Martha, now on intravenous (IV) fluids on a cardiac monitor and respirator, was nonresponsive. A young neurologist was examining her at the bedside. He had been summoned by the emergency room physician, who did not know that I was the patient’s primary care doctor.

Martha’s son and I spoke with the neurologist about her heart failure and about the repeated conversations she had held with her son concerning end-of-life care. Martha had been firm about not want- ing intubation or measures, as she had said, that would “prolong my dying,” including cardiopulmonary resuscitation. The neurologist refused to consider discontinuing life support. It was, in his words, “too soon. Let’s see what will happen.” The son, at my suggestion, asked for an additional physician to examine his mother and express an opinion about her prognosis. An internist wrote in the chart that discontinuing life support in this 86-year-old woman seemed reasonable, particularly when considering the express wishes of the patient and her deteriorating condition since admission. The neurologist stood firm, and as long as this was true, hospital regulations would not permit us to follow Martha’s verbal directives.

At this point, I had a private conversation with the neurologist who refused to discontinue life support. It became clear during our talk that he was motivated by a sincere and firm belief that discontinuing life support was never justified and that only God should extinguish the flame of life. I respected his views, although I did not share them, especially in this case where we were aware of the patient’s directives. (Note: Our dilemma could not be resolved by consulting the ethics committee since this occurred in the 1970s. The hospital ethics committee was just forming and I was involved in that process. The members of the committee were studying medical ethics, educating and informing each other on a different topic each month, but were not ready for case consultation. At a later date, undoubtedly my patient’s son and I would have presented our problem to an ethics committee and found empathy as well as neutral, informed evaluation and discussion of our situation.)

Once again, I spoke with Martha’s son who was sitting at his mother’s bedside, holding her paralyzed hand. We discussed the option of discharging the neurologist. This could have resulted in further conflict; he was the admitting physician and I was the consultant, although Martha’s long-term physician. The son and I decided that we did not want to stir up animosity and legal questions as to whether a consultant could take over a case under these circumstances. We agreed that this was not a matter of malpractice; Martha had not received poor care, only excessive medical care. It was a question of different philosophies influenced by religious beliefs, a different approach to what was appropriate care and what was inappropriate care. We chose another alternative: we went to court. It was a macabre scene; the professor and I were the only two people in the courtroom, and the judge, in his formal black robes, reminded me of paintings of death. The professor, with tears streaming down his face, pleaded with the judge to let his mother die. It seemed unfair that he had to endure such a painful predicament. I testified to Martha’s hopeless plight and submitted the internist’s note, which reflected the same facts, to the court. The judge ruled that we should follow Martha’s wishes and discontinue life support, and stay at her bedside while she died. We did just that.

I have often thought about Martha and speculated about what I would have done if the professor had agreed with the neurologist. Given those circumstances, I would have repeatedly discussed with the retired professor the directives Martha had given, and pointed out that what we were doing would not restore her to consciousness, and that what we had instituted was not beneficial to her. I suspect that the mechanical devices would probably have resulted in prolonging Martha’s life by less than a week. I would have continued to talk with the son, but not put undue pressure on him to discontinue the respirator. A physician must respect the opinions of both the living and the dying. This is always necessary but difficult, especially when the physician, family, and patient do not see eye-to-eye. In Martha’s case we had clear directives, whereas in the following case we did not.

CASE 2

I remember my ambivalent feelings when I had to turn off the respirator and extubate a young student nurse who had been involved in a bicycle accident. She and I were the same age. She had never discussed terminal care with her parents. With a flat electroencephalogram and on life support, her condition was deteriorating every hour of every day. Physicians and family reached an agreement that we needed to discontinue life support. It was up to me to disconnect the respirator, IV, and monitors, which I did reluctantly. Rationally I agreed that the student nurse was receiving futile treatment, but emotionally I found it difficult to turn off the switch on the respirator. Whenever I was confronted with the task of removing mechanical ventilation and other paraphernalia during my career as a physician, the question, “Is there any doubt that this is futile treatment?” always haunted me.

A third problem that arises at the end of life, which may result in futile treatment, is what I call the “split family,” a family that cannot come to a consensus about discontinuing life support. The following case describes one such family I knew well, because all but one son had been patients of mine.

CASE 3

Ronald,* the elderly father, was a heavy smoker and suffered from pulmonary emphysema. He came to the hospital after a car accident, in which he sustained serious chest injuries. Despite his being on a respirator, we were unable to maintain a satisfactory oxygen saturation. A pulmonologist was consulted. His opinion was that because of pre-existing lung damage, Ronald could not survive the trauma to his chest. We talked with the family, wife, two sons, and daughter, and all agreed not to prolong futile treatment. One son, however, who lived in a distant town and had flown to his father’s bedside, could not consent to terminating procedures from which little or no measure of success could be anticipated.

The pulmonologist and I spoke at length with this son. We offered to call the hospital chaplain and ethics consultant to help resolve the difference of opinion among the family members. He declined to take advantage of either one of these resources. It became clear to me that this gentleman had had difficult relations with his father for many years. This history and its consequences could not be ignored. If we had been insistent on terminating futile treatment we might actually have harmed or caused future difficulties for this son, thereby complicating his relationship with his family. Once again we talked with the rest of the family and agreed it would be best to continue futile treatment, considering the strong feelings expressed by the one son. Ronald died 2 days after our conversation, still on the respirator.

There is no doubt that uncertainties in medicine exist, both ethical and therapeutic. Because of that, futile treatment is not well-defined. What some would call “futile” others would call “worth a try.” The physician needs to negotiate and mediate, to thread his or her way through situations involving futile treatment to avoid causing harm to those faced with these difficult decisions. Procedural instructions, or hospital policies, might actually inhibit some of the give-and-take, the compromise necessary to resolve the end-of-life excessive care dilemma illustrated in the above three cases.

CASE 4

A fourth case illustrates that physicians at times unfortunately are promoters of futile procedures. Recently, I was involved in the care of an elderly lady, Sarah,* who had widely metastasized breast cancer; lungs, pleura, skin, nodes, liver, and bone were all involved. She had received radiation and chemotherapy, but the cancer showed little response to either modality. Sarah consulted an oncologist who suggested a permanent port and further chemotherapy. At my urging, she asked on her second visit what she could expect as a result of this treatment and she was told, “You have less than 3 months to live. With the medication you may add 3 plus-or-minus weeks of life to that.” Sarah had not received the information essential for giving informed consent. Once she had these facts she decided to call hospice. Futile treatment? In my view, yes, although the oncologist might reason that every day of additional life is precious. He might, on the other hand, be thinking of his own economic benefit that would result from further treatment.

Dr. Turner identifies “several sources of conflict,” such as loss of trust between physician and patient, which can precipitate a disagreement about end-of-life care. The cases cited here, physicians’ religious beliefs, family history, and possibly the caregiver’s economic considerations, illustrate other potential causes of discord. It is clear from the examples that no one set of rules will cover all the conflicts presented by inappropriate care. It is important in each case to diagnose what the underlying motives promoting futile treatment are, and then address them expediently. Procedural guidelines may be helpful, but a healthy doctor–patient relationship, which includes the family, although not a panacea, is of greater importance.

What is troubling about the use of futile care is that it represents prescribing without clear indications. It is not harmful to the patient but does consume scarce resources; at times it may even be helpful, not to the patient but, as in the third case, to the estranged son. The principle that is being violated by futile care is the purpose of the practice of medicine, which is to improve patients’ well-being, not to extend days of hopeless comatose existence. Yet, at the bedside, I find myself doing both, extending and avoiding futile care. The doctor’s ability to cut short or prolong futile care might be inhibited by strict guidelines. The alternative to a rigid protocol is to trust that physicians and patients together will find a path from life to death, which will utilize futile care appropriately.

* Real names have been changed for this article.

Please submit manuscripts on ethical issues in long-term care to Fred Feinsod, MD, MPH, CMD, Department Editor, at Feinsod@fmfmd.com.