Building the evidence base for palliative care and dementia
- 1Indiana University Center for Aging Research, Regenstrief Institute, Inc., Indianapolis, IN, USA
- 2School of Medicine, Indiana University, Indianapolis, IN, USA
- 3Fairbanks Center for Medical Ethics, Indiana University Health, Indianapolis, IN, USA
- Alexia M Torke, Indiana University Center for Aging Research, Regenstrief Institute, Inc., 410 W. 10th St., Suite 2000 IN 46208 Indianapolis, IN, 46208, USA. Email: atorke@iupui.edu
There is growing recognition among
clinicians, researchers, and policy makers of the need for high-quality
palliative care
for patients with dementia. This recognition is
increasing as evidence mounts that dementia is a terminal disease1 and that patients have many unmet needs for palliative care.2
Dementia care requires a specialized knowledge base since the disease
course and symptoms differ in important ways from other
conditions. For example, the disease trajectory of
dementia is marked by a slow, gradual decline in function and differs
from
the trajectory in cancer or cardiopulmonary disease.3
There is also a high prevalence of neurobehavioral symptoms that
provide management challenges. Also, caregivers play a unique
role since they must take over disease management and
decision making as dementia progresses. While patients suffer from high
levels of pain and other symptoms commonly associated
with diseases such as cancer, treatment may be complicated by patients’
cognitive impairment.4
Three articles from this edition of Palliative Medicine
add to our knowledge base and provide guidance for clinicians seeking
to improve palliative care quality for patients with
dementia. As we consider these important contributions
to the literature, we must also address how they point the way forward
to interventions that improve the delivery of care for
persons with dementia and their caregivers.
The article by Van der Steen et al.5
used a rigorous Delphi method to establish domains of quality
palliative care for those with dementia. There was widespread
agreement among experts included in the Delphi process
that dementia is a terminal illness that should be guided by
person-centered
care and a focal on goals of care along the illness
trajectory. Although there is an emphasis on patient and caregiver
choice
in determining goals of care, the guidelines advocate a
focus on comfort when dementia is advanced. Additionally, the goals
balance what is known about patient preferences with
best interests and family needs. The guidelines emphasize other key
elements
of quality care in dementia, including advance care
planning, continuity of care, and psychological and spiritual aspects
of care.
This article found only moderate consensus on
avoidance of artificial nutrition and hydration at the end of life,
suggesting
ongoing disagreement about the role of these medical
interventions in dementia care. There is growing observational evidence
that artificial nutrition in advanced dementia does
not improve survival and may be associated with additional patient
harms.6,7 Some organizations such as the American Geriatrics Society recommend against its routine use,8 while other experts recommend an informed discussion with caregivers.9
Two other articles in the journal point out
some of the challenges in caring well for persons with dementia at the
end of
life. One key challenge is the reduction in burdensome
transfers of care at the end of life. The article by Perrels et al.10
finds that in the United Kingdom, the majority of adults aged 85 years
and older live in the community, and 40% of adults
aged 85 years and older with severe cognitive
impairment remain community dwelling. Compared to those who live in a
residential
facility, community-dwelling adults with dementia were
more likely to die in a location other than their current residence,
suggesting a higher proportion of transitions in care
in the period close to death for those living in the community. This
was especially true for the community-dwelling group
with severe cognitive impairment, who had the highest chance of a
transition
before death.
Living in the community may reflect a
trade-off between an earlier transition to a residential setting and a
high chance of
a hospital transfer at the end of life. Such data can
help clinicians counsel patients and families about likely outcomes
of remaining in the community for patients with
dementia. Further work is needed to establish whether any of the late
transitions
in community-dwelling older adults with advanced
cognitive impairment could be prevented.
Among those dying in residential facilities in the Netherlands, De Roo et al.11
found that only 56% died peacefully in the opinion of their family
members. There is clearly a high burden of distress among
a large minority of residents at the end of life. This
proportion varied widely among facilities, suggesting that there may
be facility characteristics that are associated with a
peaceful death; however, the authors found few associations with either
the patient-level or facility-level variables that
they measured. Interestingly, symptom burden as measured by a
well-validated
tool was not associated with a peaceful death.
These studies reflect important steps on the
research pathway to high-quality palliative care. They point to a
growing consensus
on many key measures of dementia palliative care
quality but major challenges in provision of quality care. There have
been
prior intervention studies on care management
approaches for individuals across the dementia spectrum that have been
shown
to reduce neurobehavioral symptoms12 and improve adherence to care guidelines and patient quality of life.13 Two other studies have involved decision support for caregivers considering feeding tubes14 and patients considering a hypothetical future with dementia.15
However, there are few interventions that specifically address the
other palliative needs of patients with dementia identified
by the Van der Steen guidelines, such as determining
goals of care or managing pain. We are several steps away from being
able to effectively implement core guidelines on a
population basis. The next step in research is to develop and test
interventions
that put key recommendations into practice and to
determine their impact on outcomes. This research is critical in order
to
effectively care for the rapidly growing population of
older adults with dementia.
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