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					ETHICS FEATURE

A Daughter’s Duty
Larry Lawhorne, MD, Gregg VandeKieft, MD, MA, and Leonard M. Fleck, PhD


Rosa Torres (not her real name) was a 72-year-old             lems, she had few friends, and she was not part of a
woman with advanced congestive heart failure,                 faith community. Ms. Torres had another daughter
chronic obstructive pulmonary disease, and severe             on the East Coast, who was estranged from Ms.
chronic pain caused by degenerative joint disease.            Torres and Ms. Hernandez.
Over the previous 12 months, she had become bed-                 During a recent hospitalization for weakness and
and chair-bound because of shortness of breath.               confusion, Ms. Hernandez and Dr. Stevens had
Before this, she had been able to get around her              agreed that she was no longer able to meet her
apartment with a walker but could not go out with-            mother’s care needs at home, so Ms. Torres had
out assistance. She had been prescribed numerous              been discharged to a local nursing home under the
medications, including long-term treatment with               care of Dr. Stevens. There, she conflicted with staff
narcotics for pain. Her native language was Span-             and frequently refused medications and treatments.
ish, but she had lived in the United States for 40            Ms. Torres strongly wished to return to Ms. Her-
years and spoke English fluently. Despite early de-            nandez’s home, saying it was “a daughter’s duty” to
mentia, she remained oriented and capable of mak-             care for her aging parent. She called Ms. Hernan-
ing her own decisions.                                        dez many times each day begging to be taken home.
   Until recently, Ms. Torres had lived with her              Ms. Hernandez felt extremely guilty over the situ-
daughter, Angela Hernandez, who also had exten-               ation and eventually moved Ms. Torres to a private
sive medical and mental health issues. They were              home with a paid live-in caregiver. Visiting nurses
both patients of Dr. Stevens, a family physician              felt the care-giving arrangements were inadequate
with a large panel of geriatric and nursing home              and expressed concern about her safety. Ms. Her-
patients. Since becoming their physician 4 years              nandez “fired” the visiting nurse service after an
before, Dr. Stevens had regularly seen Ms. Torres,            agency social worker visited. Dr. Stevens consid-
who was usually accompanied by Ms. Hernandez.                 ered consulting Adult Protective Services but opted
They discussed advance care planning on multiple              to make a home visit first.
occasions, and Ms. Torres continued to desire ag-                Before the home visit, however, Ms. Torres was
gressive treatment, including cardiopulmonary re-             admitted to the hospital in respiratory failure. She
suscitation and intubation. She had been widowed              was placed on a ventilator, treated for pneumonia,
15 years before and had no living siblings. Her late          and stabilized after 2 days. She refused to return to
husband had sexually and physically abused Ms.                a nursing home, and at her insistence (and that of
Hernandez, who was being treated for depression               Ms. Hernandez), she was discharged to a different
and post-traumatic stress syndrome by a local psy-            private home with a different paid live-in caregiver.
chiatrist. Ms. Hernandez was quite isolated— her              She agreed to a hospice consultation. The hospice
teenage son had substance abuse and legal prob-               nurse and social worker felt her living arrange-
                                                              ments were unsafe and declined admission to hos-
                                                              pice until a better in-home care plan was in place.
   Submitted, revised, 3 November 2004.                       Ms. Torres and Ms. Hernandez declined visiting
   From the Department of Family Practice (LL) and Cen-       nursing services. She was readmitted to the hospital
ter for Ethics and Humanities in the Life Sciences (LMF),
Michigan State University, East Lansing; and Providence St.   within 24 hours because of mental status changes.
Peter Family Medicine Residency Program, Olympia, WA,            Her mental status quickly returned to baseline,
and Department of Family Medicine, University of Wash-
ington School of Medicine, Seattle (GV). Address corre-       and she initially agreed to placement in another
spondence to Dr. Gregg VandeKieft, Providence St. Peter       local nursing home under the care of Dr. Stevens.
Family Medicine Residency Program, 525 Lilly Road
NE, Olympia, WA 98506 (e-mail: gregg.vandekieft@              At the time of transfer she protested, saying that
providence.org).                                              she was “not ready to leave the hospital yet” and


http://www.jabfp.org                                                         Ethics Feature: A Daughter’s Duty   57
that she “never agreed to this nursing home.” Nurs-     she is fully oriented and capable of making her own
ing and transport staff cajoled her into going as       decisions but are provided very little information to
planned. On arrival at the nursing home, however,       support this conclusion. A psychiatric consultant
she became extremely agitated; she said that she        has suggested a diagnosis of mild dementia but
had been “tricked” and “forced to go there against      preserved ability to make decisions for herself. The
[her] will” and that she refused to stay under any      primary care physician’s agreement with the con-
circumstances. The charge nurse called Dr. Stevens      sultant’s assessment, therefore, becomes pivotal
and put him on the phone with Mr. Torres. He told       here. If her physician agrees that she is capable,
her that he was frustrated that she was not going       every effort should be made to prevent the recur-
along with their agreement and that she was leaving     rent episodes leading to hospitalization. Avoiding
him with few options, but she remained firm in her       recurrent and possibly preventable hospitalizations
refusal to stay at the nursing home. The nursing        not only saves Medicare dollars but also decreases
home staff sent her back to the hospital, where a       her risks for iatrogenic events, delirium, and decon-
mental health crisis counselor triaged her and con-     ditioning. Such an effort will require that the di-
cluded that she was not delusional or sufficiently       verse elements of the patchwork health care deliv-
impaired to qualify for involuntary placement.          ery system work in concert to tailor an
   At this time, Dr. Stevens requested that her         individualized plan for Ms. Torres. If the physician
admission be deemed medically unnecessary, rais-        does not agree with the consultant psychiatrist’s
ing the possibility that Medicare benefits for her       assessment, the probate court should be petitioned
readmission would be denied, making the patient
                                                        for limited guardianship.
responsible for the bill. A meeting was convened
                                                           Primary care physicians, by virtue of relatively
with Ms. Torres, Ms. Hernandez, Dr. Stevens, so-
                                                        frequent encounters with patients under a variety of
cial services, and the hospital’s utilization/compli-
                                                        circumstances, potentially are best positioned to
ance officer. During the meeting Ms. Torres told
                                                        assess their patients’ decision-making capacity.
Dr. Stevens, “Something’s different. You don’t love
                                                        However, the physician should use a systematic
me any more.” Ms. Torres eventually agreed to
                                                        approach1 if such an assessment can be counted on
nursing home placement. Because no local nursing
                                                        to be helpful in situations such as the one described
homes would accept her at this point, she was
                                                        for Ms. Torres. First, is there effective communi-
admitted to a facility in a different community
                                                        cation between physician and patient? In this case,
under a different physician’s care. A few days after
                                                        language barriers do not seem to be an issue, but
transfer, Ms. Hernandez visited the nursing home
and, without notifying the staff, Dr. Stevens, or her   subtle differences in phrasing and emphasis and
mother’s new physician, took her from the facility      cultural differences related to health beliefs and the
and moved her into another private home. A day          sick role may lead to misunderstandings or an in-
later, Ms. Torres was once again brought to the         ability to reach consensus about the probable effect
emergency department by ambulance because of            of treatment and placement decisions on outcomes.
acute mental status changes. Dr. Stevens was called        Once effective communication is taking place,
to admit her. He now requests an ethics consult.        the next question is: does she understand her med-
   How should Dr. Stevens respond?                      ical circumstances? Does she have the best descrip-
                                                        tion that can be provided of her diagnoses, the
Question                                                functional consequences of the diagnoses, and
The seemingly irrational behavior of Ms. Torres         prognosis? Next, does she understand her choices
may call into question the psychiatrist’s judgment      for addressing her diagnoses and their functional
that she still has decision-making capacity. How        consequences? Treatment options and placement
should the physician negotiate lingering questions      options go hand in hand in this case, with the
about her ability to make decisions about her care?     placement option the sticking point. Her reference
                                                        to her “daughter’s duty” may be a critical point
Response                                                here. Based on the available history, Ms. Torres
Larry Lawhorne                                          came to the Unites States at the age of 32 and may
A fundamental issue in this case is the determina-      have brought with her a strong belief that families
tion of decision-making capacity. We are told that      take care of their own.


58 JABFP January–February 2005       Vol. 18 No. 1                                       http://www.jabfp.org
   The final components of the physician’s assess-        capacity is impaired, he/she should work with the
ment of the decision-making capacity of Ms.              hospital’s social services department to identify a
Torres concern her ability to understand the con-        petitioner who will seek limited guardianship for
sequences of her choices and whether her choices         placement decisions only. The petitioner should
are consistent from day to day and consistent with       request that someone other than the daughter be
past decisions, beliefs and values. Many people with     appointed guardian.
mild dementia have preserved decision-making ca-            From a practical perspective, resolution of the
pacity in a number of domains, including what            situation described here will most likely require the
medical treatment they want and where they want          court appointment of a limited guardian who will
to live. If the primary care physician agrees with the   make decisions about placement and require the
psychiatric consultant that Ms. Torres can make          services of a person skilled in case management.
decisions for herself, the physician should work         The case manager can help the guardian choose the
with the hospital’s social services and discharge        site of care that is most likely to support the treat-
planning coordinators to prevent Ms. Torres from         ment and monitoring services that Ms. Torres
“falling through the cracks.” Each component of          needs to achieve her best level of physical, cogni-
the health care delivery system has clearly delin-       tive, and psychosocial functioning. The need for a
eated roles and responsibilities; however, some-         guardian should be reassessed periodically and ev-
times the transition of care provided by one com-        ery effort should be made to understand and incor-
ponent then another is neither smooth nor                porate her values and health beliefs into decisions
coordinated. The hospital’s role and responsibility      about placement and into decisions about the man-
are to provide the personnel and materials neces-        ner in which health care services are delivered.
sary to diagnose and treat her acute medical prob-
lems and to assist her in securing appropriate health
                                                         Question
care services after the hospitalization. Securing
                                                         Even if she still has decision making capacity, her
these services often includes advice about and help
                                                         decisions repeatedly conflict with agreed-on plans
with placement in a nursing facility, advice about
                                                         of care, in ways that endanger her welfare. How
and referral to visiting nurses, or advice about and
                                                         should the physician try to resolve those conflicts?
referral to a hospice provider.
   Each of these three providers can deliver ser-
vices only if the patient or the patient’s decision      Response
maker wants the service. Sometimes, we fail to           Gregg VandeKieft
explain adequately the purposes and scope of the         The behavior of Ms. Torres tests the limits of her
service choices that are offered, to define explicitly    caregivers’ patience, skill, compassion, and profes-
what the treatment goals are, and to estimate as         sionalism. Medical professionals want to provide
best we can what the prognosis may be. In addition,      care that serves their patients’ best interest. Most
we often fail to elicit from the patient what her        physicians accept that “best interests” sometimes
expectations are and how her expectations and our        take a back seat to an autonomous patient’s con-
predictions may differ. Adult Protective Services        trary wishes. However, her actions conflict so dras-
(APS) has a responsibility to help keep Ms. Torres       tically with what seems to be in her best interest
safe but is also very protective of her right to make    that questions about her ability to make rational
decisions about how and where she lives. It is un-       decisions are inevitable.
likely that APS will intervene if she has been as-          Assuming, however, no significant impairment
sessed to be capable of making decisions for herself.    in decision-making capacity, one’s response to this
   On the other hand, people with mild dementia          situation can emphasize either conflict or engage-
that is complicated by a mood disorder or a pre-         ment. This case certainly has multiple conflicts:
existing personality disorder or who are over-           between patient and physician, daughter and phy-
whelmed by social or financial problems may not be        sician, patient and hospital/nursing home, daughter
capable of making their own informed decisions. In       and hospital/nursing home, and potentially be-
such cases, and this may be one of them, the pro-        tween physician and hospital/nursing home. The
bate court should be petitioned to help resolve the      most important conflict, however, is between the
issue. If the physician believes that decision-making    patient and her daughter. Ms. Torres seems to be


http://www.jabfp.org                                                    Ethics Feature: A Daughter’s Duty   59
manipulating the health care system by manipulat-        and other health professionals. Varying levels of
ing her daughter, Ms. Hernandez—primarily via            counter-transference play a part, and physicians
guilt. One can easily imagine that this is a lifelong    may act out their own issues unawares. A patient’s
pattern and that Ms. Hernandez must be dealing           refusal to follow recommended care may be per-
with enormous internal conflict. Ms. Hernandez’s          ceived, even subliminally, as a personal rejection
motives in aiding her mother’s seemingly self-de-        and may intensify the emotions involved. “Self-
structive behavior are also unclear: is she being a      awareness is critical because of the pervasive role
dutiful daughter, is her behavior a passive-aggres-      emotions play in the decision-making process and
sive means of punishing her mother. . . or both?         the process of communication. Unfortunately,
   Given Ms. Torres’s debilitated and vulnerable         medical education does not emphasize the art of
condition, one might expect her to turn her care         cultivating self-awareness.”4 Dialogue with col-
planning over to her daughter, or that Ms. Her-          leagues and other caregivers involved in Ms.
nandez could easily convince her mother to “play         Torres’s care may be valuable. The process of re-
along.” However, sick people possess a paradoxical       flection and dialogue will lessen the likelihood that
moral authority. “To experience serious illness is to    the physician will act in a “knee-jerk” manner and
be struck by a sense of disability and powerless-        sever the relationship, or take other actions or say
ness. . . . However, if the sick affect the healthy in   things that adversely affect the relationship or
deep and powerful ways and if to be sick is to           hinder the opportunity to achieve a mutually satis-
occupy a well-defined social role that creates recip-     factory outcome.5–7
rocal role responsibilities in others, then the sick        Given the recent experiences with placement in
person is ironically also in a position of great pow-    private homes, Ms. Hernandez’s decision to re-
er.”2 Familial and cultural factors also play a sub-     move her mother from the nursing home placed
stantial role in defining the power structure within      Ms. Torres at great risk. Doing so without the
relationships. Thus, to better understand the family     knowledge of Dr. Stevens or the nursing home staff
conflict, and to be able to mediate some of the           seems deceptive or, at best, an impulsive response
conflicts between Ms. Torres and the medical              to a domineering parent. During the hospitaliza-
team, one needs to engage the patient and her            tion that concludes the case presentation, Dr.
daughter and learn something of their story.3            Stevens and hospital staff should engage Ms.
   Someone with whom Ms. Torres and Ms. Her-             Torres and Ms. Hernandez to ascertain their goals
nandez have a trusting relationship should explore       for care—individually and as a family—and estab-
the conflicts between them, as well as Ms. Hernan-        lish a care plan with clear expectations and bound-
dez’s feelings about her mother’s charge that she        aries. If Ms. Torres communicates better in Spanish,
“failed to perform her duty.” Dr. Stevens could be       the hospital should offer professional interpretive
an appropriate candidate, given his long-standing        services to assure accurate translation of medical
relationship with both women. However, he may            terms and concepts, to assure that Ms. Hernandez’s
no longer be able to muster sufficient objectivity        biases do not magnify or distort the language bar-
and empathy to work with them. Either way, the           rier, and to spare Ms. Hernandez the pressure of
interviewer should have expertise in family dynam-       serving as medical translator. During the patient’s
ics, because there seems to be a long family history     hospitalization or nursing home stay, APS can be
of manipulative behavior. An inexperienced inter-        notified of the previous actions that placed her at
viewer or armchair psychotherapist could exacer-         risk, but as an inpatient or a nursing home resident,
bate the family conflicts and miss opportunities to       she will be deemed to be in a safe environment and
negotiate a shared treatment plan. People who            no actions will be taken as long as she remains in
might facilitate this process include a hospital chap-   that setting. At discharge, however, APS can be
lain or clergy from Ms. Torres’s own religious           asked to monitor the situation and intervene if Ms.
community, a social worker, or a mental health           Hernandez attempts to move her out of the nursing
professional. The interdisciplinary expertise pro-       home again. Legal and ethical considerations then
vided by an ethics committee consultation might          come to bear on the extent to which a vulnerable
also help sort out the complex issues.                   elderly person may be placed at risk, and whether
   “Difficult” and highly vulnerable patients stim-       placement in a safer environment should be man-
ulate a strong emotional response from physicians        dated.


60 JABFP January–February 2005        Vol. 18 No. 1                                       http://www.jabfp.org
    The time and energy required by patients and        medical care that simply represents bad medicine,
families such as Ms. Torres and Ms. Hernandez are       such as antibiotics to treat a common cold. Second,
incredibly draining and can lead to “compassion         respect for patient autonomy does not give patients
fatigue.” However, finally achieving a mutually sat-     a right to demand medical care for which they have
isfactory care plan and seeing the patient and family   no just claim, when honoring their claim requires
benefit from those efforts can be very rewarding.        us to violate the more compelling claims of others
Just as the journey, rather than the destination, may   to that health resource.
define any passage, so the process of communica-            Ms. Torres is not occupying an intensive care
tion, reflection, and cultivating self-awareness in      unit bed, where such competing claims are more
the service of one’s challenging patients may be a      readily apparent. She is occupying an ordinary
defining event in the physician’s professional devel-    acute care bed, which we will assume for the sake of
opment. Although such difficulties are seldom wel-       argument is not in short supply. This means that no
come they are, as Ms. Torres might say, “a doctor’s     one else’s just claim to that bed is being denied
duty.”                                                  because she is occupying it. Still, that does not give
                                                        her a moral right or a just claim to that bed. Medi-
                                                        care may justifiably refuse to pay the hospital for
Question
                                                        Ms. Torres’ continued hospital stay once she no
Given that Ms. Torres’ repeated hospitalizations
                                                        longer needs that level of care. That means that the
are largely preventable and caused by decisions
                                                        hospital itself will have to absorb the cost of Ms.
made by her and her daughter, what are the limits
                                                        Torres’ care from its charity care budget, and the
of the hospital’s moral obligation to bear the costs
                                                        eventual result may be that resources are unavail-
of her unnecessary hospitalizations?
                                                        able for meeting other patients’ more compelling
                                                        needs. Hospital charity care budgets are under in-
Response                                                tense pressure. In the past, hospitals have been able
Leonard Fleck                                           to sustain large charity care efforts by, in effect,
This is a very complex case. I would construe one of    over-billing patients who were very well insured.
the central moral questions this way: does the hos-     These days, however, managed care organizations
pital have a moral obligation to provide Ms. Torres     and other insurance payers are demanding dis-
with a hospital bed when her medical condition as       counts from hospitals in exchange for guarantees
such does not dictate that she be in a hospital bed?    that more patients will be sent their way. That has
I do not believe such an obligation exists in this      severely eroded charity care budgets. Conse-
case. That, however, suggests a follow up question.     quently, hospitals need to prioritize access to those
Does the hospital nevertheless have an obligation       charity care dollars. This is itself a serious moral
to “do something” by way of meeting Ms. Torres’         issue. Patients with serious and urgent health needs
needs and protecting her best interests? That is,       who can benefit substantially from access to timely
would the hospital be open to justified moral crit-      hospital care are patients who will have the stron-
icism if the hospital simply discharged Ms. Torres,     gest moral claim to those charity care dollars. It is
saying in effect, this is not our problem? To this      very far from obvious that Ms. Torres’ belongs in
question I would give an affirmative answer, dis-        that category.
cussed below.                                              Does our analysis up to this point warrant the
    Although the case raises important questions of     broad conclusion that the hospital has no moral
competency, discussed by another commentator, I         obligations with respect to Ms. Torres? No. Even if
shall assume for the sake of my discussion that Ms.     she has no rightful claim to the charity budget, the
Torres has expressed an autonomous, competent           hospital has continuing moral obligations with re-
choice to remain in the hospital. Does that auton-      spect to the protection of her best interests. At a
omous choice generate a moral obligation on the         bare minimum, the hospital must protect Ms.
part of the hospital to respect that choice? I argue    Torres from harm. Thus, the hospital would be
that it does not.                                       open to justified moral criticism if Ms. Torres were
    There are limits to what respect for patient au-    simply discharged again to the care of her daughter
tonomy requires. First, patients may not demand         with the attitude “we will just hope for the best,”
(as a moral right) that physicians provide them with    when there is no reasonable basis for hope in this


http://www.jabfp.org                                                   Ethics Feature: A Daughter’s Duty   61
regard. Thus, the hospital continues to have a            morally perfect solution, but it would be “good
moral obligation to keep working with Ms. Torres,         enough” given the complexity of the circumstances
her daughter, and relevant agencies to establish safe     in this case.
and stable arrangements for her postdischarge care.
Strategies for accomplishing this are discussed by        References
other commentators.                                        1. Tunzi M. Can the patient decide? Evaluating patient
   What if such plans still don’t work, and Ms.               capacity in practice. Am Fam Physician 2001;64:
                                                              299 –306.
Torres ends up back in the hospital yet again? Even
                                                           2. Brody H. Sickness and social relations. In: Stories of
if she has no just claim to a hospital bed, the
                                                              sickness, 2nd ed. New York: Oxford University
hospital would still have an obligation to protect            Press; 2003. p. 129 – 49.
her best interests. The moral problem is how to do         3. Charon R. The patient-physician relationship. Nar-
that in a way that also protects the hospital’s obli-         rative medicine: a model for empathy, reflection,
gations to the more rightful claims of other patients         profession, and trust. JAMA 2001;286:1897–902.
drawing on its charity care budget. Solving this           4. Connelly JE. Refusal of treatment. In: 20 common
                                                              problems: ethics in primary care (Sugarman J, edi-
problem may require some creative financing. Per-
                                                              tor). New York: McGraw Hill; 2000, p. 187–98.
haps, for example, hospital administrators could
                                                           5. Epstein RM. Mindful practice. JAMA 1999;282:
propose a deal to Medicare. If Medicare pays the              833–9.
hospital what would otherwise be paid to a skilled         6. Meier DE, Back AL, Morrison RS. The inner life of
nursing facility, then the hospital will accept that as       physicians and care of the seriously ill. JAMA 2001;
payment in full. That figure may be close to the               286:3007–14.
actual marginal costs of the hospital for Ms. Torres,      7. Novack DH, Suchman AL, Clark W, Epstein RM,
                                                              Najberg E, Kaplan C. Calibrating the physician.
minimizing demands on charity care resources.
                                                              Personal awareness and effective patient care. Work-
And, as long as the hospital is not looking at 100%           ing Group on Promoting Physician Personal Aware-
occupancy by needy acute care patients, the justice           ness, American Academy on Physician and Patient.
issue there is negated as well. This would not be a           JAMA 1997;278:502–9.




62 JABFP January–February 2005         Vol. 18 No. 1                                          http://www.jabfp.org

				
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