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A case of missed opportunities at life’s end


The story of Florence McCarty’s death fills me with sadness. In the last days of her mother’s life, Patty found herself in meetings with physicians, lawyers and administrators, trying unsuccessfully to stop a futile war against death, a war being waged allegedly on her mother’s behalf. Everyone involved seems to have missed so much.

Caught in a quagmire of medical-legal events, Patty was unable to focus on final acts of love for her mother. That was her mother’s loss, too. The physician and most of the nursing home staff missed the opportunity to do the things in those last days that would have been most supportive and meaningful for Mrs. McCarty and her loved ones. It seems there are only losers in this story.

The story of this death stands in stark contrast to that of my own grandmother a few years ago. Poke, as she was affectionately called by family and friends, died in a nursing home a few months before her 94th birthday. Over the seven years she lived there, her mental abilities diminished until finally she didn’t seem to recognize her daughters, let alone the rest of the family. In the months before her death, she was nowhere near the stout woman who had come to the nursing home, but she always did eat. Until one day when she stopped. Continued attempts were made by many to get her to eat -- all without success.

The physician talked with my mother and aunt. They agreed that Poke, in her own way, was letting it be known that it was her time to die. There were other occasions in the last few years when we had wondered if this was going to be it. But Poke always let us know then that the answer was no. Those closest to Poke knew that this time was different. In the end, that wisdom made all the difference.

My mother and aunt were reassured by the physician and nursing home staff that everything would be done to keep Poke comfortable. The physician explained that we could expect Poke to live another one to two weeks in the absence of food and fluids.

I drove 200 miles to make one last visit. Most of the time, either my mother or my aunt was at Poke’s bedside. The nursing home staff gave her excellent care. It was all simple, gentle kinds of care: bathing, changing, turning and mouth care. They also did their best to provide emotional and spiritual care to her loved ones.

Even at a distance I felt peacefully connected to what was happening. One morning as I was walking down a hall of the hospital where I worked, I felt a sudden urge to call the nursing home. My mother came to the phone, and while she was talking to me, my aunt came to tell her that Poke had taken her last breath. I went to the hospital chapel for a few moments of silence and prayer for my grandmother.

When she died, we knew Poke was at peace and, therefore, we could be, too. We were grateful for the care and support of the physician and staff at the nursing home. In short, it was a difficult but humanizing experience for everyone.

I should point out that this was not a religiously sponsored nursing home. My grandmother did have a legally valid durable power of attorney for health care that named my mother as her agent for health care decisions. According to my mother, that document was never mentioned or produced during any of the discussions that involved decisions about Poke’s care during her last days.

What can account for the differences in the story of Patty’s mother’s death and the story of Poke’s death? Most important, how can individuals and institutions assure a humanizing experience for patients and their families as they face the reality of death.

The goal is clear

In Catholic health care, the goal is clear: the “Ethical and Religious Directives for Health Care Services” tell us that “Above all, as a witness to its faith, a Catholic health care institution will be a community of respect, love and support to patients or residents and their families as they face the reality of death.” What is necessary to make this goal manifest? There are several points that health care professionals and institutions must have on their internal moral compasses if this goal is to become a reality. They include, but are not limited to the following:

First and foremost, death must not be viewed as the ultimate enemy. If it is, what we are left with is, to use Fr. Richard McCormick’s words, “a kind of medical idolatry, the absolutization of physical existence.” Furthermore, that view grants a one-dimensional aspect to the physician’s role -- either cure or quit. For the patient who is approaching death, this view will lead to abandonment or to an escalating Vietnam-like war against death. It is essential that medical practice balance the commitment to cure disease and preserve life with a realistic acknowledgment that human beings are mortal. The view that death is not the ultimate enemy but rather a natural part of life must be fostered by individuals, institutions and larger society.

From cure to care

When cure is not possible, the task of medicine is to care. This is a task that requires particular skills and knowledge. I recently talked with a retired surgeon about end-of-life care. He explained that when he finished medical school many years ago, he was told that the two most important things he would learn from his mentors would be to recognize when a patient was dying and how to care for that dying patient. He expressed his own sense of professional embarrassment that those two important aspects of physician training have largely disappeared since the advent of technological advances. Although the majority of physicians lack education (and mentoring) in end-of-life care, the good news is that in the last five years the number of medical schools providing professional training and education in that area has increased significantly. Similar training programs are currently being developed for practicing physicians. Health care institutions, especially those that are Catholic, have a responsibility to develop policies and provide education that will provide the structures and tools for excellence in end-of-life care.

It should be assumed that patients, families and health care professionals are working together for the patient’s good. My 20 years in health care has taught me that in the vast majority of situations, this assumption will prove valid. Although it went unstated, that was clearly the assumption of everyone involved with my grandmother’s care. The physician and staff of the nursing home recognized that my mother and aunt loved their mother, and therefore had “moral standing” to be the primary decision-makers about her care.

Of course my mother and aunt relied heavily on the information and clinical judgments of the physician and nursing home staff. Together, in a partnership of trust and respect, acting out of love and not fear, they were able to reason together and arrive at what all believed was the right thing to do.

Health care professionals, patients and families benefit from a framework for making decisions about end-of-life care. A few essential elements include good medical information and in-depth exploration of the patient’s wishes, values and beliefs, and a knowledge of moral principles. A long-standing teaching of the Catholic church tells us it is morally acceptable -- and often an act of love -- to reject life-prolonging procedures (including medically assisted nutrition and hydration) that in the light of the relevant facts of a particular situation are insufficiently beneficial or excessively burdensome. This was the choice that Cardinal Joseph Bernardin made when he terminated the chemotherapy that no longer offered him any reasonable benefit against inoperable cancer.

Why the difference?

Because I was not involved in Patty’s experience of her mother’s death, I cannot say why there was such a difference. However, based on my direct involvement in similar situations, I suspect that the physician and the staff of the nursing home were missing some essential points on their internal moral compasses.

In addition to the points I have already mentioned, the moral consideration that seems to be most lacking in Mrs. McCarty’s situation is that of keeping the interests of the patient central to the decision-making process. On several occasions in this story, it appears that the interests of the physician and the nursing home were allowed to override a focus on the patient’s interests. The unfolding scenario suggests that the unsubstantiated fear of a lawsuit seemed to get in the way of recognizing Patty as the morally valid surrogate for decision-making about her mother’s care. Moreover, it may have led to the unnecessary recommendation that Patty seek legal guardianship.

Edmund Pellegrino, a respected physician ethicist, once noted that “nothing more exposes a physician’s true ethics than the way he or she balances his or her own interests against those of the patient.” The same can be said for institutions.

Because Mrs. McCarty could no longer speak for herself, the physician and staff of the nursing home were required to determine her appropriate surrogate decision-maker(s). Like the majority of Americans, Patty’s mother had not legally named anyone as her agent for health care decisions. Even if she had, the health care professionals caring for her would still be obligated to determine the moral validity of the legally valid surrogate.

(I once encountered a patient whose legally valid surrogate had intentionally shot her in the neck. This was the reason the patient was comatose and could no longer speak for herself. Of course, we focused on identifying the morally valid surrogate(s) for this patient in order to proceed with decision-making about her care.)

Florence McCarty had two children: Patty nearby, who was and had been involved in her mother’s care, and a son who lived at a distance. Evidence suggests that the son was aware of what was happening with his mother and indicated he did not wish to be involved. Knowing and documenting this information and, absent any concerns about Patty’s moral validity, the physician and nursing home could have recognized her as her mother’s valid surrogate decision-maker and discussed care with her accordingly.

The dialogue could have explored a more in-depth understanding of what Mrs. McCarty meant when she said, “I would want you to do what you could for me.” Patty could interpret the statement from the perspective of an intimate loved one who had known her mother for most of her 97 years. The physician could interpret that statement in light of the patient’s current clinical condition and prognosis.

Together, based on Patty’s personal knowledge of her mother and the physician’s clinical judgment, reasonable goals for treatment could have been mutually agreed upon, with everyone’s focus centered on Mama.

To say that Patty had no standing regarding decisions about her mother’s care was to take a purely legalistic approach to an essentially moral issue. It also cut off patient-centered dialogue, setting family and professional caregivers in opposition to each other. Or in Patty’s words, “It seemed as if they had taken over, had erected a Plexiglas shield between Mama and those who loved her.”

Common practice throughout the large Catholic health system where I currently work is to require that legal guardianship be established only in those situations where conflict between morally valid surrogates cannot be resolved.

Additionally, if a patient has no surrogate decision-maker at all and there is uncertainty about what is in the best interest of the patient, guardianship may be sought. Generally speaking, guardianship proceedings are viewed as a last resort and occur only in rare circumstances. This practice has not resulted in adverse legal outcomes. However, it does require a commitment on the staff’s part to take the time necessary to carefully assess both the moral and legal validity of surrogate decision-makers.

If physicians and institutions can remain patient-centered, it is more likely that they will be able to dialogue effectively with appropriate surrogate decision-makers and respond with compassion to everyone involved.

When conflicts arise

How might Patty have influenced the outcome of this story? The “Ethical and Religious Directives for Catholic Health Care Services” require that an ethics committee or some form of ethical consultation be available to assist by advising on particular ethical situations in Catholic facilities. In order to be effective, patients, families, physicians and staff must be aware of these resources. Moreover, those functioning as such resources must have their own internal moral compasses in good working order. This requires considerable self-education and a commitment to support such work from the institution and its leadership. Having said that, it should be apparent that the quality of such assistance may vary greatly.

If attempts at resolution are unsuccessful, the option of transferring care remains. Sometimes a change in physician is all that is necessary to resolve an issue; at other times, care may need to be transferred to another facility once it has been established that a different approach is possible. These options are often not readily apparent to people in the midst of such conflict. What is needed is the type of institutional leadership that will commit to the development of expectations, policies and education necessary to minimize the likelihood of such difficulties arising in the first place.

Sadly, the contrast between these two stories illustrate that good intentions alone will not create a community of respect, love and support for patients or residents and their families as they face the reality of death. It is a much more complicated cultural matter. In some cases, creating that community will require a conversion of heart and a commitment to develop specialized knowledge, skills and resources. At a minimum, it requires the recognition that the practice of medicine is primarily a moral endeavor, based on trust and rooted in virtue. It is important to realize that communities of respect, love and support do exist for those facing the reality of death, and those who need them should search until they find them. Let’s hope the need to search will one day disappear.

Becky Pruitt works in Springfield, Mo., as an ethicist for St. John’s Health System, which is a member of the Sisters of Mercy Health System-St. Louis. She is also a licensed attorney.

National Catholic Reporter, April 2, 1999