703861
research-article2017
PMJ0010.1177/0269216317703861Palliative MedicineEditorial
Editorial
When it comes to death, there is
no place like home… Or is there?
The primary focus of palliative care is to maximize
patients’ quality of life, reduce symptoms, and help
patients make decisions that honor their values and pref-
erences (related to treatments, end-of-life preferences for
location of death, etc.). Since the landmark SUPPORT
study,1 overwhelming evidence suggests that use of
emergency and acute care services near death often does
not meet these goals as patients and families experience
distress and suffering as a result of patients receiving
overly aggressive, burdensome treatments and oftentimes
being tethered to machines. From this perspective, there
would seem to be no place like home. This is an underly-
ing theme in this issue’s studies by Reyniers et al.2 and
Sutradhar et al.3 that examine how palliative care involve-
ment is contributing to reduced use of acute care services
by seriously ill and dying patients and their surviving
family members.
Reyniers and colleagues examined family physicians’
perspectives on the appropriateness and avoidability of
their patients’ hospitalized death. The overall number of
deaths in these categories was relatively low; only 14%
were considered inappropriate, an equal number were
considered avoidable, and 8% were considered both
inappropriate and avoidable. Three characteristics were
associated with inappropriate/avoidable deaths: poor-
prognosis cancers, admission initiated by their family
member, and a family physician with additional pallia-
tive care training.
Reyniers et al.’s findings shine a light on why avoida-
ble, inappropriate deaths in hospital occur. One reason is
lack of or late communication about prognosis and inade-
quate advance care planning—an issue routinely addressed
by early palliative care. Persons with poor-prognosis can-
cers and potentially curable hematological malignancies,4
who have been exposed to early palliative care, experience
earlier conversations, better quality of life, mood, reduced
symptoms, and fewer in hospital deaths than those who
had usual cancer care.5,6 However, even though studies
have documented the benefits of early palliative care, this
care model has yet to be widely adopted.7
Palliative Medicine
2017, Vol. 31(5) 391­–393
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DOI: 10.1177/0269216317703861
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Reyniers et al.’s findings also raise a number of impor-
tant questions. First, we do not know whether family phy-
sicians were aware of patients’ wishes about where they
wished to die and whether they considered the patients’
wishes when making a judgement about the appropriate-
ness decision. Second, the investigators did not ask family
physicians to rate the admissions’ avoidability and appro-
priateness of patients who died in the palliative care unit.
This may be a missed opportunity since there has been
limited attention to the desirability and acceptability of the
palliative care unit as the location of hospital death when
home death is not possible. Should we assume palliative
care unit deaths are always appropriate and never avoida-
ble? Documenting whether and how hospital death in a
palliative care unit is consistent with patients’ wishes may
help support the value of such services.
While there is strong evidence about the impact of pal-
liative care on hospitalization,5 Sutradhar and colleagues
extend this knowledge by examining the impact of special-
ized palliative home care (compared to general home care)
on high- and low-acuity emergency department (ED) vis-
its, hypothesizing that palliative home care might not be
able to reduce the risk of ED visits due to high-acuity prob-
lems such as sepsis or respiratory distress. Strikingly, the
investigators found that both low- and high-acuity visits
were statistically lower in patients receiving specialized
palliative home care.
How could this be? How does specialized palliative
home care reduce ED visits due to more complex issues?
Sarmento et al.’s8 recent meta-ethnography of 19 qualita-
tive studies of palliative home care summarized patient
and family perspectives on “what works.” Families
described how home palliative care provided a sense of
security through presence (24 h per day/7 day per week
availability) and competence (expertise in symptom con-
trol and communication) suggesting that symptom man-
agement and less panic by families seemed to be specialized
home care’s operative elements.
The studies discussed here have added to the corpus of
evidence demonstrating the value of palliative care; how-
ever, they also reveal on-going challenges and priority
areas for discovery and dissemination. Two questions
readily come to mind: How can we support family caregiv-
ers who can have a major influence on patients’ acute care
392 Palliative Medicine 31(5)
resource use? And what are the most effective and scalable
models to provide the same level of palliative care exper-
tise and availability to all, and especially to patients and
their clinicians in the most rural areas?
Relative to family caregivers, despite international
consensus and guidelines about the critical need for sup-
port, few palliative care models have been identified that
accomplish this routinely and effectively.7 In Reyniers
et al.’s study, potentially inappropriate hospital admis-
sions were initiated 45.7% of the time by patients’ partner
and non-partner family members. Similarly, they initi-
ated 48.6% of potentially avoidable admissions, and
these results highlight the influential role that families
play in decisions to seek care in hospitals. In some cases,
it may be that inadequate family support was the reason
for terminal admissions and ED visits. Thus, it is prudent
to consider the role that earlier palliative care might have
had in these cases to better address the prospective needs
of family caregivers. In Sutradhar et al.’s study, family
caregivers were not included in their analyses; however,
the authors speculate that the reduction in low- and high-
acuity ED visits may be attributable to palliative home
care easing the distress of family who might otherwise
panic and take the patient to the hospital. Reynier et al.’s
results would certainly support this explanation.
Consequently, future work is needed to screen and iden-
tify high-risk family caregivers that might benefit from
early palliative care and reduce the chances of inappro-
priate or avoidable care transitions. However, we would
also caution against treating home death as the “right”
choice for all families and all cultures. Family members
witnessing a loved one’s death in the home, even in cir-
cumstances of excellent supportive care and a symptom-
free, peaceful death, may still be traumatic. And because
the death occurred in the home, the imprint of that experi-
ence may be re-experienced daily and pathologically
intrusive for some family members, especially partners/
spouses who still live in the home. Gomes et al.’s5
Cochrane review of home palliative care services did not
find that palliative care home services had any impact on
caregiver grief; hence, home deaths may not always be
beneficial for a family’s ability to cope with loss.
Second, despite the rapid growth of specialty pallia-
tive care, there is still a scarcity of palliative care exper-
tise in rural areas. Recent reviews have summarized the
difficulties of providing palliative care in areas that may
lack even basic health care resources or being provided
by practitioners who have had little experience, educa-
tion, and opportunity to provide this care. Of interest is
that in Sutradhar et al.’s study, patients receiving stand-
ard home care had a greater than threefold increase in
low-acuity ED visits. The authors point out that in rural
areas, the ED may be their source of primary care due to
the scarcity of family physicians. While palliative care
for all is a desirable goal, the realities of limited palliative
care specialty training for generalist practitioners and a
scarce specialty palliative care workforce is an important
consideration. Recent trials of palliative care via tele-
health and the use of trained, community-based workers
show promise of bringing palliative care resources to
patients and their family caregivers even when they are
located in the most remote areas.9 Hence, we would urge
that creative, community-engaged solutions, such as lay
health workers, be considered when developing models
of early palliative care in order to help extend the reach
of specialty palliative care across the urban–rural divide.
Even if should we achieve this, we would continue to
stress the importance of keeping patient and family pref-
erences central to our practice. Because when it comes to
death, there is no place like home… but perhaps not for
everyone.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with
respect to the research, authorship, and/or publication of this
article.
Funding
The author(s) received no financial support for the research,
authorship, and/or publication of this article.
References
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Editorial 393
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Marie Bakitas1,2 and J Nicholas Dionne-Odom1
1School of Nursing, University of Alabama at Birmingham,
Birmingham, AL, USA
2Division of Gerontology, Geriatrics, and Palliative Care, Department of
Medicine, University of Alabama at Birmingham, Birmingham, AL, USA
Corresponding author:
Marie Bakitas, School of Nursing, University of Alabama at Birmingham,
MT 412C, 1720 2nd Avenue South, Birmingham, AL 35294-1210, USA.
Email: mbakitas@uab.edu