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
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
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
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Torres ends up back in the hospital yet again? Even
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62 JABFP January–February 2005 Vol. 18 No. 1 http://www.jabfp.org