Analysis A
case of missed opportunities at lifes end
By BECKY PRUITT
The story of Florence McCartys
death fills me with sadness. In the last days of her mothers 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 mothers 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 mothers 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 didnt 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 Pokes 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 Pokes care during
her last days.
What can account for the differences in the story of Pattys
mothers death and the story of Pokes 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 McCormicks
words, a kind of medical idolatry, the absolutization of physical
existence. Furthermore, that view grants a one-dimensional aspect to the
physicians 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 patients 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 grandmothers 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 patients
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 Pattys experience of her
mothers 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. McCartys 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
patients 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 mothers
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 physicians 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,
Pattys 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 mothers 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 Pattys moral validity, the
physician and nursing home could have recognized her as her mothers 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 patients current
clinical condition and prognosis.
Together, based on Pattys personal knowledge of her mother
and the physicians clinical judgment, reasonable goals for treatment
could have been mutually agreed upon, with everyones focus centered on
Mama.
To say that Patty had no standing regarding decisions about her
mothers 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 Pattys 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 staffs 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. Lets hope the
need to search will one day disappear.
Becky Pruitt works in Springfield, Mo., as an ethicist for St.
Johns 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
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