Original Articles
Managing Pain, Managing
Catherine of Siena Fellow in
Ethics, Visiting Assistant Professor
of Philosophy, Department of
Philosophy, Villanova University,
Villanova, Pennsylvania
Address correspondence to Timothy
W. Kirk, PhD, Department of
Philosophy, Villanova University, 800
Lancaster Ave., Villanova, PA 19087.
E-mail: timothy.kirk@villanova.edu
1524-9042/$32.00
© 2007 by the American Society
for Pain Management Nursing
doi:10.1016/j.pmn.2006.12.004
Ethics
yyy Timothy W. Kirk, PhD
y ABSTRACT
Noncompliance of family caregivers can present home hospice nurses
with difficult ethical choices and powerful feelings about those
choices. This is particularly so when family members do not ade-
quately palliate their loved ones, resulting in treatable symptom dis-
tress during the dying process. This article presents a case study,
moral analysis, and an evidence-based, practical plan of action for
engaging family members of palliative care patients on a home hos-
pice service.
© 2007 by the American Society for Pain Management Nursing
CASE STUDY
Edward Cox is a seventy-four year old white male with primary end-stage colon
cancer and metastases to the brain and lungs. He lives at home with his wife,
Martha, and is a patient of Good Care Home Hospice. Over the past two weeks,
he has become increasingly unable to communicate verbally with his wife and
the hospice nurse. However, he consistently shows signs of increasing discom-
fort and occasional bouts of breakthrough pain. His wife does a fairly reliable job
of administering short-acting analgesics to address the breakthrough pain. She
does not, however, consistently administer the prescribed long-acting analgesia
to address her husband’s constant and increasing baseline pain and agitation. On
several occasions, the hospice nurse has explained to Mrs. Cox that treating Mr.
Cox’s breakthrough pain, while important, does not sufficiently treat his con-
stant and increasing state of distress, which the nurse believes is a result of
insufficient analgesia and resulting fatigue from his inability to rest comfortably.
The hospice social worker and chaplain have both visited Mr. and Mrs. Cox
several times, and have individually reinforced the necessity of round-the-clock,
long-acting analgesia to keep Mr. Cox comfortable. However, Mrs. Cox contin-
ues to insist on administering her husband’s pain medications “at her discre-
tion”. The Cox’s hospice nurse is growing increasingly angry at Mrs. Cox,
believing that she is essentially torturing her husband as he dies by withholding
the prescribed pain medications. There are no children or other family members
to bring in to the circle of care, and with each visit she sees Mr. Cox in growing
distress, the nurse’s frustration and anger grows. To whom does the hospice
nurse have moral obligations in this case? What are those moral obligations?
What are the options for this hospice nurse? What is the ethically appropriate
course of action in this case?
INTRODUCTION
This case illustrates a familiar source of moral distress for nurses: conflict over
what is best for the patient (Sundin-Huard & Fahy, 1999). The nurse both thinks
Pain Management Nursing, Vol 8, No 1 (March), 2007: pp 25-34
26
and feels that Mrs. Cox is interfering with one of a
hospice nurse’s most basic moral obligations to the
patient: to provide him with a death as free as possible
from symptom distress. Because most hospice patients
are dying at home, hospice nurses frequently assume
the role of patient advocate by taking on the respon-
sibility of primary communicator between the hospice
patient, the family, and the medical team (McSteen &
Peden-McAlpine, 2006). When patients experience
symptom distress, one of the hospice nurse’s primary
roles is to seek out medication changes, alterations to
care plans, and other treatment interventions to alle-
viate that symptom distress. When nurses encounter
resistance or difficulty, the conflict between what they
believe they are morally obligated to do and what the
resistance is preventing them from doing creates
moral distress (Corley, 2002).
When the source of resistance is one of the pa-
tient’s family members, hospice nurses are placed in
an especially difficult moral situation. In home hospice
care, the family is not only the primary source of care
and support for the patient; the family is the patient.
That is, hospice care is delivered to the entire primary
circle of care for the patient, which often includes the
patient’s family. Indeed, Fisher (2003) notes that re-
search on families involved in palliative care has
largely assumed that such families function healthily,
and have the best interests of their dying loved ones at
heart. Practicing hospice nurses know, however, that
this is not always the case. There is little guidance,
moral or otherwise, in the palliative care nursing liter-
ature on providing home-based palliative care to pa-
tients with primary caregivers that are (a) unable to
adequately provide support, or (b) neglect to provide
reliable support, or, even, (c) actively choose to with-
hold support for loved ones experiencing symptom
distress.
The paragraphs that follow offer one method and
justification for intervention that begin with the as-
sumption that the hospice nurse and team have moral
obligations that are more complex than the traditional
provider-patient dyad model allows. In the case of Mr.
and Mrs. Cox, the author argues that the nurse can
honor moral obligations to both the patient and the
patient’s family, even if the outcome results in Mr. Cox
dying while experiencing symptom distress.
The intent of this article is to offer a practical,
specific, and—where possible— evidence-based plan
of action in cases similar to the one above with Mr. and
Mrs. Cox. It is unlikely, in such extreme cases, that
resolution via consensus will occur. As such, what
counts as a “good” outcome—morally and clinically—
may not align neatly with the stated goals of hospice
care.
Kirk
The author hopes that this article will open a
dialogue in which palliative care nurses and other
hospice team members participate, perhaps with the
result of generating alternative plans of action, apply-
ing different moral frameworks, or formulating re-
search questions to generate much-needed data on this
topic.
MORAL ANALYSIS
The hospice nurse has significant moral obligations to
both Mr. Cox and Mrs. Cox in this case. The tradi-
tional approach of American healthcare ethics that has
evolved out of principalism would begin moral analy-
sis by looking at the nurse’s obligations to the patient,
Mr. Cox. As such, it is tempting to begin discussion of
this case by enumerating the various moral obligations
the hospice nurse has to her patient. In so doing, Mrs.
Cox could quickly be identified as a barrier to the
nurse caring for Mr. Cox. A primary goal, then, would
be to minimize the degree to which Mrs. Cox inter-
feres with the ability of the nurse to administer the
care needed to relieve the patient’s pain and associ-
ated distress. In other words, Mrs. Cox is a barrier to
be “overcome” or, if needed, “removed.” Such an
analysis, however, and the dyadic paradigm out of
which it arises, does not take into account the unique
philosophy behind hospice as an approach to end of
life care.
In hospice care, members of the team have moral
obligations to both the patient and the patient’s care-
givers. Indeed, in hospice the professional team mem-
bers are not the patient’s primary caregivers. It is the
family, loved ones, and other patient-identified inti-
mates who are the primary caregivers. In this case, the
hospice nurse’s “client” is made up of Mr. Cox and
Mrs. Cox, his primary caregiver. Hence, minimizing
Mrs. Cox’s role is not only morally inappropriate, it is
antithetical to the overall philosophy of hospice.
Yet, from the perspective of the hospice nurse,
Mrs. Cox seems to be failing in her role as primary
caregiver. The challenge for the hospice nurse, then, is
to advocate for Mr. Cox in a way that both (a) enables
his pain and associated distress to be adequately
treated and (b) empowers Mrs. Cox to be a successful
primary caregiver.
As a hospice patient, Mr. Cox has the right to the
best death possible. A basic tenet of the hospice phi-
losophy is for the entire hospice team to strive to
achieve minimum symptom distress for their dying
patients. In accepting Mr. Cox as a patient, the hospice
team assumed the obligation to make every reasonable
effort to control his symptoms as he dies. As noted
above, however, direct patient care is only one facet of
 Managing Pain, Managing Ethics
hospice care. In accepting Mr. Cox as a patient, the
hospice also accepted Mrs. Cox as his primary care-
giver. The hospice philosophy emphasizes supporting
caregivers to give the best care possible to their dying
loved ones. Hence, upon each patient admission, hos-
pice professionals incur moral obligations to both the
dying patient and that patient’s identified caregivers.
The home hospice philosophy of caring for the
patient via the patient’s primary caregivers stretches
the capacity of the dominant American approach to
healthcare ethics, principalism. As such, while stan-
dards of surrogate decision-making based on duties to
respect Mr. Cox’s autonomy and act beneficently to-
ward him are discussed below, they are not where the
proposed plan of action begins. Rather, the plan of
action begins with the assumption that moral obliga-
tions are owed to the Coxes together as a family.
The moral obligations hospice professionals incur
to patients are primary obligations. That is, they arise
from the very nature of the provider-patient relation-
ship. So, while one can certainly argue that there are
contractual obligations between patient and provider,
there also exist deeper, more primary obligations be-
tween provider and patient that arise out of the pa-
tient’s vulnerability, the limits on the patient’s auton-
omy as a result of symptom distress, and the assaults
on the patient’s integrity as a person by the suffering
associated with the dying process. Because nurses and
other hospice professionals have specialized training,
and because they themselves are not experiencing the
symptom distress and suffering that would limit their
autonomy and integrity, these care professionals have
a fiduciary responsibility to Mr. Cox as a patient and as
a person.
The moral obligations of hospice professionals to
Mrs. Cox are derivative in the sense that they are
derived from her role as primary caregiver to Mrs. Cox.
In other words, care providers have an obligation to
Mrs. Cox relative to her status as Mr. Cox’s caregiver.
And, while these obligations are derivative, that does
not lessen their importance. Surely, a significant part
of who Mr. Cox is—and has been during much of his
lifetime—is husband and companion to his wife. Sim-
ilarly, a significant part of who Mrs. Cox is—and has
been during much of her lifetime—is wife and com-
panion to her husband. Kuczewski (1996) offers a
compelling argument that, because the identity of per-
sons is powerfully shaped by the significant relation-
ships in their lives, the meaning of moral obligations to
specific patients must always be understood in the
context of the intimate relationships that shape those
patients’ identities. So, in a very real and important
sense, honoring Mrs. Cox is honoring a part of Mr.
Cox. Indeed, the most complete way to honor moral
27
obligations to Mr. Cox is to simultaneously honor
moral obligations to Mrs. Cox as his primary caregiver.
As derivative moral obligations, however, the hospice
team’s obligations to Mrs. Cox are linked to her hon-
oring her own obligations as caregiver to Mr. Cox.
Hence, the morally preferable way to deal with the
situation at hand is to support Mrs. Cox in a way that
enables her to be the best caregiver possible, thereby
minimizing Mr. Cox’s symptom distress and suffering
and giving him the best death possible.
To do that, Mrs. Cox’s behavior needs to be un-
derstood and modified. The best way to begin to do
that is to investigate, identify, and understand the
beliefs, values, and other influences that give rise to
that behavior.
Plan of Action
1) Establish common goals; investigate disparities
2) Establish shared perceptions; investigate disparities
3) Establish shared beliefs; investigate disparities
4) Establish shared action/behaviors; investigate disparities
The first step is to confirm that Mrs. Cox shares the
hospice team’s goals of enabling Mr. Cox to die a death
as free from symptom distress as possible. While one
would assume that Mrs. Cox shares the team’s goal of
symptom distress relief, this might be a hasty assump-
tion. Patients and their caregivers do not always en-
gage hospice care out of a desire to embrace the
hospice philosophy and focus on palliation. In the
United States, a patient might engage hospice care for
financial reasons—to get the prescription medications
paid for, for example, or to seek assistance from social
work in getting nurses aides and personal attendants
hired and paid for. As such, while a thorough admis-
sions process should identify the primary reasons a
patient and his family are seeking hospice care ser-
vices, simply because a patient and his caregiver chose
hospice care it does not mean that one or both of them
share the hospice philosophy on palliation. Similarly,
patients and their caregivers could agree with the
philosophy at the time of admission, but have a change
of heart as the disease process wears on. Kaiser et al.
(1990) note the possibility of resentment and hostility
developing in caregivers, raising the question of care-
givers seeking to punish patients for historical— or
contemporary—perceived wrongs. As such, an impor-
tant first step for the hospice nurse in this case is to
reconfirm that Mrs. Cox does, indeed, believe that
symptom distress relief and sufficient palliation are
primary goals in her husband’s care.
The second step is to confirm that Mrs. Cox does,
in fact, perceive and understand that the patient is in
pain. Kristjanson et al. (1998) suggest that hospice
28
providers use a symptom assessment tool with both
the patient and his caregiver for the duration of the
caregiving relationship. If the patient is communica-
tive at the beginning of the relationship, this will
provide important baseline information on the congru-
ence of the patient and caregiver’s perceptions of
symptom distress, and the hospice nurse can also
observe the degree to which these assessments align
with the nurse’s own assessment of the patient’s dis-
tress. Should the patient grow noncommunicative as
death approaches, the family caregiver and nurse will
have a good body of knowledge with which to assess
cues of symptom distress together despite the pa-
tient’s inability to communicate the experience of his
symptoms precisely via language. The nurse and the
family caregiver will also have an established comfort
level and communication pattern regarding symptoms
that can, in most cases, mitigate disagreement about
the patient’s symptoms and level of distress.
In the case of Mr. and Mrs. Cox, it is too late to
gather that baseline information. However, implemen-
tation of a symptom assessment tool can help Mrs. Cox
and the nurse to focus on evidence-based cues and
indicators of symptom distress, perhaps alleviating the
stress which can arise from conflicting subjective as-
sessments of the patient’s pain. Validated assessment
tools can provide a common frame of reference in
which Mrs. Cox and the nurse can explain to each
other reasons for believing that the patient is (or is
not) in pain. Should the nurse and Mrs. Cox be able to
use the assessment tool to reach a reasonable agree-
ment on the level of Mr. Cox’s symptom distress, this
may provide a common starting point for once again
explaining the logic behind, and importance of, the
prescribed analgesic regimen.
In looking to the literature for assistance in un-
derstanding how or why Mrs. Cox may not perceive
that her husband is in pain, several studies explore the
perceptions and estimates of patients’ pain by their
caregivers. None appear to be too helpful to this par-
ticular situation, however. Kristjanson et al. (1998)
report high congruence (68% to 96%) between patient
and family caregiver assessment of patient distress in
terminally ill patients. And, while the authors do note
some demographic factors that can influence congru-
ence in the perception of distress “including marital
status of the patient, gender of the patient, age of the
family caregiver, family caregiver’s relationship to the
patient, and family income”, none of the variables
appear to have high predictive power. Yeager et al.
(1995) and Dar et al. (1992) report a trend of family
caregivers’ estimates of patients’ pain being higher
than estimates of the patients themselves.
Kirk
Ward et al. (1993) note that fear and denial, while
perhaps not affecting the perception of symptom dis-
tress, can nonetheless affect the acknowledgement of
increased symptom distress. The logic at play suggests
that caregivers associate increased pain with disease
progression. And, disease progression means their
loved one is closer to death. So, acknowledging that
Mr. Cox’s pain is getting worse could force Mrs. Cox
to acknowledge that her husband’s death is imminent.
Denial of increasing symptom distress, however, al-
lows Mrs. Cox to avoid acknowledging that her hus-
band’s disease is progressing and, thus, enables her to
avoid dealing with the feelings associated with his
impending death. Hence, use of objective reference
points for symptom distress, as with a symptom assess-
ment tool mentioned above, might be more effective
combined with the assistance of a bereavement coun-
selor. Although frequently implemented after the pa-
tient’s death, bereavement counseling is a common
component of hospice care and could be introduced
in the palliative phase of care.
If agreement can be reached on the level of Mr.
Cox’s symptom distress, the third step is to explore
the disconnect between this shared perception and
Mrs. Cox’s failure, thus far, to regularly administer the
long-acting analgesics. One way to think about possi-
ble reasons for Mrs. Cox’s reluctance to appropriately
administer her husband’s medication regimen would
be to consider and investigate beliefs that the research
literature suggests commonly interfere with adequate
pain management at home. Several studies offer useful
guidance in illuminating such beliefs, which may be
hindering Mrs. Cox’s ability to care for Mr. Cox.
Ward et al. (1993) developed the Barrier Ques-
tionnaire (BQ) based on the eight most commonly-
cited patient-related barriers to cancer pain manage-
ment, which constitute the major categories of the
Questionnaire. They include: “(a) fear of addiction to
analgesics, (b) fatalism about the possibility of achiev-
ing pain control, (c) concern about drug tolerance, (d)
belief that “good” patients do not complain, (e) belief
that side-effects of analgesics are even more bother-
some than pain, (f) fear of injections, (g) fear that
reporting pain distracts a physician from treating one’s
disease, and (h) belief that increased pain signifies
disease progression” (Ward et al., 1998, p. 406).
Berry and Ward (1995) administered the 1993 BQ
to 37 primary caregivers to assess the degree to which
the beliefs on which the original eight patient-related
barriers were based were also beliefs held by caregiv-
ers, the implication being that perhaps corrections of
these beliefs could improve caregiver administration
of analgesia in cases where the barriers were actually
caregiver-based rather than patient-based. They found
 Managing Pain, Managing Ethics
all eight barriers to be present among caregivers, with
(a) concerns about the side effects of analgesics, (b)
confusion about addiction versus tolerance, and (c)
belief that acknowledging an increase in pain indicates
advance of the disease process to be the most preva-
lent (Berry and Ward, 1995).
Letizia et al. (2004) developed and administered
the Caregiver Pain Medicine Questionnaire (CPMQ)
to 151 hospice caregivers. Their findings are similar to
those of Berry and Ward (1995) . . . “more than a
quarter were concerned about addiction, tolerance,
and side effects from medications. A fourth of the
caregivers had difficulty administering medications be-
cause of fear of doing something wrong and difficulty
deciding which or what amount of medications to
give” (Letizia et al., 2004, p. 114).
The combined findings of these studies (Berry &
Ward, 1995; Ward et al., 1993, 1998; Letizia et al.,
2004) suggest that a good place to begin with Mrs.
Cox would be to explore her understanding of and
beliefs about the side effects of analgesia, her under-
standing of tolerance and possible fears about addic-
tion, and her level of confidence about administering
the medications. Given her apparent willingness to
administer short-term analgesics for breakthrough
pain, it also seems wise to ensure her understanding of
the difference between long-term and short-term anal-
gesics, and the philosophy of long-term analgesia treat-
ing pain before it occurs, rather than responding to
pain after it occurs (as with short-term analgesia).
Kaiser et al (1990) highlight the role that patient
and caregiver history may play in the development of
beliefs about pain management. Specifically, the au-
thors note the importance of investigating (a) previous
experiences (positive and negative) with pain medica-
tion (perhaps with the treatment of previous illness or
other relatives); (b) the possibility that the patient,
caregiver, or someone else with access to the house-
hold may have a current or past addiction or abuse
issue; and (as mentioned in step one) (c) the belief that
the patient’s pain now is the result of punishment for
a previous wrong or sinful act (and as such should not
be eased by medication).
If it has not been done already (or, perhaps, even
if it has), sitting down with Mrs. Cox and building a
detailed family history with emphasis on experiences
with opioid drug use and, perhaps, drug use in gen-
eral, may uncover an experience or event that is per-
petuating a belief or perception that prevents Mrs.
Cox from administering the long-acting analgesia.
Haidet and Paterniti (2003) note the power of allowing
the patient to control the initial direction and scope of
the history taking process, transforming it into what
they call a shared history building process. They high-
29
light the way in which such a process not only re-
spects patient autonomy by asking questions and
learning about patients, but also allows a patient to
exercise autonomy by sharing control of the discus-
sion and actively building a personal narrative with
and for the provider. While this is especially effective
and powerful early in a care relationship, it may still be
a helpful approach to take with Mrs. Cox, given both
the sensitivity of the issue (possible opioid use/abuse
in the past) and the context of the discussion (in
which Mrs. Cox may perceive the disagreement over
pain management as the hospice provider’s attempt to
wrestle control of her husband’s care away from her).
History can also be important insofar as the pa-
tient and his caregivers may have an existing relation-
ship with a family physician or specialist that has
developed over several years. Including that physician
in one or more of the discussions that make up the
four steps above, and getting his or her explicit en-
dorsement of the hospice team’s recommended treat-
ment regimen may be helpful in changing Mrs. Cox’s
behavior. Similarly, involving clergy or other trusted
sources of guidance and advice to the family over time
may be helpful. Attempts to secure Mrs. Cox’s permis-
sion to consult such persons should be made to re-
spect confidentiality.
If the hospice nurse and her team have been
successful in moving through steps one, two, and
three, bringing Mrs. Cox’s goals, perception, and be-
liefs into alignment with those of the care team, the
fourth and final step is to develop a plan of action,
which facilitates Mrs. Cox administering the analgesia
regimen, long acting and short acting, as prescribed. If
steps one, two, and three above have established a
shared philosophy of care between Mrs. Cox and the
hospice team, and Mrs. Cox demonstrates willingness
and intent to administer the analgesia regimen as pre-
scribed, then progress should be monitored closely.
Potential practical barriers to administration— caregiver
forgetfulness or confusion, difficulties in delivering med-
ications via the prescribed route, patient resistance to
accepting medication—all need to be watched for and
plans made, if necessary, to overcome such barriers.
Increasing the frequency of home visits, timing visits
to coincide with medication administration, and,
when possible, expanding the circle of care to include
other patient intimates are all options to consider to
ensure successful symptom relief in the face of prac-
tical challenges not related to Mrs. Cox’s willingness to
participate in her husband’s care.
Similarly, the team can explore alternate routes of
analgesia administration in a way that mitigates the
effect of Mrs. Cox’s noncompliance. If the patient has
enough fatty tissue, the team could consider a long-
30
acting transdermal fentanyl patch, which could be
applied during nursing visits and may sufficiently re-
lieve symptom distress between visits. Similarly, a
switch to subcutaneous or IV pain management and
the inclusion of a home infusion team in the care
process may make Mr. Cox less reliant on his wife for
appropriate pain relief. Both of these options, of
course, would require the consent and cooperation of
Mrs. Cox, but may take some of the burden of care off
of her shoulders and more effectively treat her hus-
band’s symptoms.
Impasse
What if the four steps above do not result in adequate
relief from symptom distress for Mr. Cox?
Option 1: Focus on the wishes of Mr. Cox. In a
small number of cases there will be failure to reach
agreement on one or more of the points above. The
nurse and Mrs. Cox may be unable to come to an
agreement on Mr. Cox’s level of symptom distress. Or,
they may not reach accord on belief that the pre-
scribed analgesia regimen is either necessary or effec-
tive in addressing Mr. Cox’s symptom distress. This
would then likely preclude agreement on adhering to
the prescribed analgesia regimen. It is also possible
(and, perhaps, more disturbing) that the nurse and
Mrs. Cox may be able to agree that Mr. Cox is expe-
riencing significant symptom distress, and that follow-
ing the prescribed analgesia regimen would ade-
quately resolve Mr. Cox’s symptom distress, but fail to
reach agreement on the appropriateness of adminis-
tering the long-acting analgesia. In such cases, moving
beyond the perceptions and beliefs of Mrs. Cox to
those of Mr. Cox himself may, in a small number of
cases, persuade caregivers like Mrs. Cox to put their
own beliefs aside and abide by the wishes of the
patient.
Substituted judgment is one ethical standard for
surrogate decision-making. Based on honoring and
preserving patient autonomy, this standard for deci-
sion-making requires the surrogate to use as the sole
criterion the expressed, implied, or predicted wishes
of the patient. And, while research continues to dem-
onstrate that surrogates accurately predict the wishes
of patients only 50% to 70% of the time, the odds of
honoring patient wishes accurately are increased
somewhat when the patient’s wishes pertaining to
specific interventions have been explicitly discussed
during the course of illness, have been discussed with
the surrogate and healthcare provider together, and
documented (Shalowitz et al., 2006). While the nurse
may assume that Mrs. Cox shares the understanding
that substituted judgment is an appropriate standard
for ethical surrogate decision-making, an explicit dis-
Kirk
cussion of this standard and its role in protecting
patient autonomy may be helpful.
Hence, the nurse should explore the expressed
wishes of Mr. Cox himself. Does Mr. Cox have an
advance directive that addresses palliation? Does his
advance directive declare a surrogate decision-maker?
Is it Mrs. Cox? If so, the team can explain her moral
obligation to honor Mr. Cox’s wishes as his surrogate
decision-maker. If Mr. Cox’s advance directive de-
clares a surrogate decision-maker other than Mrs. Cox,
that person can be brought into the care equation as
an advocate for the patient’s wishes.
As with the recommended proactive serial assess-
ment of pain over the course of the care relationship
noted in step two above, a member of the hospice
team should frequently explore Mr. Cox’s values and
preferences regarding end of life treatment from the
very beginning of the care relationship. This can pro-
vide important information about his wishes and val-
ues, which can in turn be used in the surrogate deci-
sion-making process when Mr. Cox loses the ability to
communicate clearly. While many hospices delegate
responsibility for discussing and completing advance
directives to social workers, having the hospice nurse
participate in detailed, ongoing discussions about the
patient’s wishes pertaining specifically to pain man-
agement ensures that such discussions are informed
by someone with the appropriate clinical expertise in
palliation. It also means that the nurse who will likely
be providing the pain management interventions if
and when the patient loses the ability to communicate
will have had direct, ongoing, and prospective discus-
sions with the patient about his wishes specific to pain
management. This reduces the difficulty inherent in
the nurse trying to interpret the patient’s wishes re-
garding palliation based solely on a written document.
Option 2: Pursue a guardian ad litem or seek the
assistance of protective social services. As noted
above, the standard of substituted judgment incurs on
surrogates a moral obligation to make decisions in
accord with the wishes of the patient, when possible.
When the wishes of the patient are uncertain or un-
known, and cannot be obtained, surrogate decision
making shifts to the standard of best interests. Bailey
(2006) notes that the concept of best interests implies
that there are certain minimum standards of quality of
life. Like many scholars and practitioners of healthcare
ethics, Bailey believes that pain and suffering are sig-
nificant components of any model of quality of life. As
such, it is hard to argue—absent evidence of patient
wishes to the contrary—that inadequate palliation
would satisfy the best interests standard in surrogate
decision-making.
 Managing Pain, Managing Ethics
All too often, hospice teams mistakenly believe
that their hands are tied when faced with a surrogate
decision-maker like Mrs. Cox. This is especially the
case when the surrogate is not only appointed via the
advance directive, but is also the durable power of
attorney for health care. In fact, if the hospice team
agrees that Mrs. Cox is either (a) not acting according
to the known wishes of Mr. Cox, or (b) not acting in
the best interests of Mr. Cox, they can seek a court-
appointed guardian ad litem to make care decisions
for Mr. Cox. This would be the standard recom-
mended action in a healthcare ethics class or text-
book. Alas, the team is not practicing in a healthcare
ethics classroom and there are, of course, practical
obstacles that usually prevent this from occurring.
When the intensity of disagreement escalates between
the hospice team and Mrs. Cox, it is likely that Mrs.
Cox will terminate the care agreement and seek out
another source of care for her husband. Almost cer-
tainly she will do so upon learning the hospice team is
pursuing a guardian ad litem. Additionally, most hos-
pices, with the possible exception of those associ-
ated with large health systems, do not have ready
access to experienced, in-house legal counsel to
pursue the guardian. Given that Mr. Cox may have
to be placed in a care facility outside his home, and
given the cost of such care compared with the
standard hospice reimbursement rate from Medicare
and other third party payers, most hospices have a
financial disincentive to pursuing legal action. So,
while pursuing a guardian ad litem is, in a limited
number of extraordinary cases, an effective way to
advocate for reducing Mr. Cox’s symptom distress,
it is highly unlikely that a nurse will be able to
convince the hospice administration to do so.
It is also possible to see Mrs. Cox’s unwillingness
to adhere to the prescribed analgesia regimen as elder
abuse. If seen in this light, contacting and cooperating
with the appropriate government agencies could re-
sult in (a) additional support services for Mrs. Cox to
encourage and assist her participation in the plan of
care or, if that does not prove effective, (b) a shift of
Mr. Cox’s custody and removal of Mrs. Cox as his
primary caregiver. Although scant, there is mention in
the literature of the problem of abuse in families en-
gaged in the primary palliative care of a loved one.
Payne (2005) reports on the policies and experi-
ence of St. Christopher’s Hospice, in south London,
pertaining to adult abuse by family caregivers. In over-
viewing changes to the Hospice’s policies and exam-
ining sample cases from 2004, Payne notes that effec-
tive case management of in-home hospice patients at
risk for abuse by their caregivers remains a challenge.
An ongoing debate is the degree to which certain
31
forms of neglect constitute “abuse”, and Payne ex-
plains several fears and misbeliefs that prevent hospice
staff from referring patients to adult protection ser-
vices.
Fisher (2003), an Australian scholar, offers a thor-
ough review of the issue of abuse in palliative care
families, noting especially the almost complete lack of
research on the subject. Like Payne, Fisher raises the
question as to what degree neglect can constitute
abuse. She writes, “In the family violence literature,
abuse is seen to exist along a continuum from neglect,
psychological and financial abuse through to physical
and sexual abuse. Research has found that physical
abuse accounts for only one in four substantiated cases
of abuse of the elderly, although a victim may be
subjected to more than one type.”
“Despite disagreement among researchers and
practitioners as to what constitutes abusive behavior,
the salient point for palliative care professionals, and
vital in aiding in its identification, is that abuse exists
along a continuum from nonphysical to physical acts
with nonphysical abuse the most common among the
elderly” (2003, p 259).
In the United States, the National Elder Abuse
Incidence Study offers categorical definitions of elder
abuse which include physical, emotional or psycho-
logical abuse, neglect, abandonment, financial or ma-
terial exploitation, and self neglect. Neglect is defined
as follows:
“Neglect is the refusal or failure to fulfill any part
of a person’s obligations or duties to an elder. Neglect
may also include a refusal or failure by a person who
has fiduciary responsibilities to provide care for an
elder (e.g., failure to pay for necessary home care
service, or the failure on the part of an in-home service
provider to provide necessary care). Neglect typically
means the refusal or failure to provide an elderly per-
son with such life necessities as food, water, clothing,
shelter, personal hygiene, medicine, comfort, personal
safety, and other essentials included as a responsibility
or an agreement” (National Center on Elder Abuse,
1998, p. 3-3). Taken at face value, withholding pain
medication would constitute abuse if these definitions
were used.
Healthcare professionals cannot take the possibil-
ity of abuse lightly. Jayawardena and Liao (2006) note
that underreporting of elder abuse is a significant prob-
lem. And, while there is no specific data on the prev-
alence of abuse and reporting in the palliative care
population, the authors share the suspicions of Fisher
(2003) and Payne (2005) above that elder abuse is
under reported in the population of elders receiving
palliative care. Indeed, the authors note that one bar-
rier to reporting abuse can be shame on the part of the
32
hospice team: “Reporting elder abuse is not an admis-
sion of failure by the palliative care (or hospice) team.
The team members should be reassured that they have
provided good care and are now taking the appropri-
ate action by reporting the abuse” (Jayawardena &
Liao, 2006, p. 131).
Similarly, misconceptions and lack of knowledge
about the processes of adult protective services can
deter hospice team members from seeking assistance.
Belief that such a call will definitely result in Mr. Cox’s
placement in a care facility, for example, or will lead to
criminal prosecution of Mrs. Cox, reveal a misunder-
standing of the goals and methods of most adult pro-
tective care services. Surely these are possible out-
comes, but the primary goal of such services is to stop
the abuse. If there are ways to do so that involve
supporting Mr. Cox and Mrs. Cox in their home, or
collaborating with hospice to ensure Mrs. Cox can
visit regularly and participate in the care of Mr. Cox if
he is placed in a care facility, such options can and
should be pursued.
The team also needs to consider their legal obli-
gations to Mr. Cox in this situation. Jayawardena and
Liao (2006) note that healthcare providers are manda-
tory reporters of abuse in 37 states in the United
States, and that in many cases the criteria for reporting
constitute a “suspicion of abuse,” not necessarily de-
finitive proof of abuse. McIntire (2004) notes that
malpractice litigation involving neglect-based abuse is
on the rise, and foresees a shift in the standard of care
used in civil tort proceedings that will imply a duty to
provide palliative care.
While soliciting adult protective services does not
incur the monetary costs that pursuing the appoint-
ment of a guardian ad litem would, and while it may,
in fact, be a legal obligation, there may a significant
price to pay in the involvement of protective services:
Mr. Cox may not be able to die at home and may be
separated from his wife. And, while from the perspec-
tive of the hospice nurse this price may be worth it to
resolve Mr. Cox’s symptom distress, adequate pain
relief may not have been the only goal Mr. Cox sought
when he enrolled in hospice. It is likely that he wanted
to die at home in the company of his family. Judging
whether or not the burden of dislocation from home
and separation from his wife is outweighed by the
benefit of adequate symptom relief is not as straight-
forward a task as it may seem, and should not be
undertaken lightly. Indeed, it is hard to imagine
whom, save the patient, could make such an unquali-
fied decision.
Nonetheless, if the team believes that Mrs. Cox’s
behavior constitutes abuse, and its ongoing efforts to
change that behavior fail, the question of when there
Kirk
is an obligation to seek protection for Mr. Cox, and
when the team’s failure to do so constitutes participa-
tion in the abusive situation, arises. The legal answer
to that question is beyond the scope of this article. The
moral answer, however, is one that hospices as orga-
nizations need to consider carefully so they can offer
their providers guidance and support. This is not a
decision that the nurse should shoulder alone. Indeed,
“hospice programs should develop a protocol for the
detection and assessment of elder mistreatment. In
these situations, interdisciplinary communication and
good documentation are essential. Such a practice
should enable all providers in that practice to rapidly
assess the elder and document the situation” (Jayawar-
dena and Liao, 2006, p. 133).
Option 3: Continue to involve the entire hospice
team in trying to treat Mr. Cox’s symptom distress,
maintaining the involvement of Mrs. Cox as his care-
giver. If the hospice team believes that Mrs. Cox’s
behavior does not rise to the legal level of abuse, or if
adult protective services is consulted and they reach
the same conclusion, there will likely come a point in
the nurse’s relationship with the Coxes where, out of
a sense of moral indignation, she will want to termi-
nate her relationship with the Coxes. It is not uncom-
mon for nurses who are participating in care that they
believe to be not sufficiently meeting patient needs to
begin to feel morally complicit, to begin to believe that
they are part of the problem (Sundin-Huard & Fahy,
1999). Following reasonable efforts to convince Mrs.
Cox of the need to change the way Mr. Cox is receiv-
ing his analgesic regimen, such feelings are bound to
arise; and, one might ask, at what point does the nurse
become morally complicit in undermedicating Mr.
Cox? Two weeks? Two months? At some point, the
hospice nurse may wish to transfer the Cox’s case to a
different provider, believing this will absolve moral
complicity in failing to achieve adequate symptom
relief.
Termination of the care relationship by the nurse
in this situation is not a way to reduce or eliminate
moral culpability for Mr. Cox’s pain and distress.
Surely, the nurse’s legitimate feelings of anger and
frustration may become a barrier to working effec-
tively with the Coxes. However, at that point the
hospice nurse adds a barrier to Mr. Cox receiving
effective care: her feelings of anger and frustration.
Whether or not the nurse is “right” to feel this way, the
original barrier to Mr. Cox’s pain management was the
behavior of Mrs. Cox and the beliefs and perceptions
behind that behavior. Unmanageable feelings on the
part of the hospice nurse towards Mrs. Cox, though
they may be an understandable response to Mrs. Cox’s
behavior, introduce a second barrier to Mr. Cox’s pain
 Managing Pain, Managing Ethics
management. Should the nurse allow those feelings to
compromise her efforts to care for Mr. Cox, including
her efforts to change Mrs. Cox’s behavior, by reducing
the amount of time she spends at the house each visit,
reducing the number of visits to the house, or refusing
to stay on as the nurse in this case, she may be able to
allay her feelings via avoidance (although this is not
likely), but she makes it less—not more—likely that
Mr. Cox will get the symptom relief he deserves as he
dies.
One of the possible outcomes, then, given the
practical difficulties of appointing a guardian ad litem
and the possibility that Mrs. Cox’s behavior does not
constitute abuse as noted above, is that the best job
the nurse and her hospice colleagues can do could still
fail to satisfy the perceived basic moral obligations
owed to Mr. Cox. That is, the hospice nurse could
work breathlessly to change Mrs. Cox’s behavior or
place Mr. Cox in a care facility that would adequately
treat his symptom distress, but Mrs. Cox may termi-
nate the care contract or Mr. Cox may die before his
wife’s behavior changes in a way that allows effective
analgesia. It is possible that the nurse will do every-
thing “right”, including engaging the various members
of her interdisciplinary hospice team appropriately,
yet the outcome will still involve Mr. Cox dying in pain
and symptom distress. Or, Mr. Cox may be placed in a
care facility that enables appropriate administration of
analgesia and relief of his symptom distress, but may
be dislocated from his home or separated to some
degree from his wife.
If such an outcome occurs, the hospice nurse will
likely experience moral distress that extends beyond
the death of Mr. Cox. Residual feelings of guilt, frus-
tration, and bitterness would be expected in such a
situation. Each hospice, and each team member, has
its own mechanisms for addressing such feelings. It is
important, however, for the nurse and her fellow team
members to realize that Mr. Cox dying in pain, while
REFERENCES
Bailey, S (2006). Decision making in acute care: Practi-
cal framework supporting the “best interest” principle.
Nursing Ethics, 13(3), 284-291.
Berry, P. E., & Ward, S. E. (1995). Barriers to pain man-
agement in hospice: A study of family caregivers. The Hos-
pice Journal, 10(4), 19-33.
Corley, M. C. (2002). Nurse moral distress: A proposed
theory and research agenda. Nursing Ethics, 9(6)636-650.
Dar, R., Beach, C. M., Barden, P. L., & Cleeland, C. S.
(1992). Cancer pain and the marital system: A study of
patients and their spouses. Journal of Pain and Symptom
Management, 7(2), 87-93.
33
certainly constituting a failure to achieve the desired
outcome, does not constitute a complete moral failure
on the part of the hospice nurse and her team mem-
bers. Outcomes— consequences—are significant
when reflecting morally on a case. However, so too are
intentions and actions. If the nurse and her team fully
intended to achieve relief for Mr. Cox’s symptom dis-
tress, and if they competently and diligently acted to
bring about that relief, those intentions and actions are
morally praiseworthy even in the absence of complete
symptom relief.
CONCLUSIONS
The case of Mr. Cox illuminates several of the quan-
daries that can be encountered by the home hospice
nurse. This article has demonstrated that fully meeting
the ethical obligations owed to patients by home hos-
pice nurses is not always possible. Fully employing
evidence-based strategies to incorporate family mem-
bers selected by the patient into delivering the best
palliative care possible is, at times, the best nurses can
do. This article offers one model for doing so. Employ-
ing such strategies, however, does not always guaran-
tee the desired outcomes of a death free of symptoms
distress and family members fully participating in care
of their loved ones. Failure to achieve these outcomes
will likely result in feelings of moral distress and failure
in nurses. Nonetheless, in such extreme cases, nurses
who continue to engage in processes like the one
modeled above are doing work that is morally praise-
worthy.
Acknowledgements
The author thanks John Fielder, Ph.D., Lenore Kahn, MSW,
LSW, and Jennifer Johnston-Kirk, RN, BSN, for their feedback
on earlier drafts of this article.
Fisher, C. (2003). The invisible dimension: Abuse in pal-
liative care families. Journal of Palliative Medicine, 6(2),
257-264.
Haidet, P., & Paterniti, D. A. (2003). “Building” a patient
history rather than “taking” one: A perspective on informa-
tion sharing during the medical interview. Archives of In-
ternal Medicine, 163(10), 1134-1140.
Jayawardena, K. M. & Liao, S. (2006). Elder abuse at
the end of life. Journal of Palliative Medicine, 9(1),
127-136.
Kaiser, K. S. (1990). Removing barriers in hospice pain
management: A family matter. Caring, 9(11), 42-49.
34
Kristjanson, L. J., Nikoletti, S., Porock, D., Smith, M.,
Lobchuck, M., & Pedler, P. (1998). Congruence between
patients’ and family caregivers’ perceptions of symptom
distress with terminal cancer. Journal of Palliative Care,
14(3), 24-32.
Kuczewski, M. (1996). Reconceiving the family: The
process of consent in medical decision making. Hastings
Center Report, 26(2), 30-37.
Letizia, M., Creech, S., Norton, E., Schanahan, M., &
Hedges, L. (2004). Barriers to caregiver administration of
pain medication in hospice care. Journal of Pain and
Symptom Management, 27(2), 114-124.
McIntire, T. (2004). Elder abuse litigation and the duty
to provide palliative care. The Physician Executive, 30(6),
44-49.
McSteen, K. & Peden-McAlpine, C. (2006). The role of
the nurse as advocate in ethically difficult care situations
with dying patients. Journal of Hospice and Palliative
Nursing, 8(5), 259-269.
National Center on Elder Abuse. (1998). National elder
abuse incidence study. Washington, DC: American Public
Human Services Association.
Kirk
Payne, M. (2005). Adult protection cases in a hospice:
An audit. Journal of Adult Protection, 7(2), 4-12.
Shalowitz, D. I., Garrett-Mayer, E. & Wendler, D. (2006)
The accuracy of surrogate decision makers. Archives of
Internal Medicine 166(5), 493-497.
Sundin-Huard, D., & Fahy, K. (1999). Moral distress, ad-
vocacy and burnout: Theorizing the relationships. Interna-
tional Journal of Nursing Practice, 5(1), 13.
Ward, S. E., Carlson-Dakes, K., Hughes, S. H., Kwekke-
boom, K. L., & Donovan, HS. (1998). The impact on qual-
ity of life of patient-related barriers to pain management.
Research in Nursing & Health, 21(5), 405-413.
Ward, S. E., Goldberg, N., Miller-McCauley, V., Mueller,
C., Nolan, A., Pawlik-Plank, D., et al. (1993). Patient-related
barriers to management of cancer pain. Pain, 52(3), 319-
324.
Yeager, K. A., Miaskowski, C., Dibble, S., & Wallhagen,
M. (1995). Differences in pain knowledge and perception
of the pain experience between outpatients with cancer
and their family caregivers. Oncology Nursing Forum,
22(8), 1235-1241.