One of the issues
I dealt with almost daily is the one of when to begin
palliative care. For those who don’t know the term,
palliative care means that the focus of the care of your
loved one shifts from trying to maintain life as long as
is humanly possible (families often believe they will be
seen by family or God as “giving up”) to the focus of
promoting function, comfort, and quality of life. At the
end stages of the disease, this usually involves a
Palliative care requires
the family/care provider acknowledge a few things:
acknowledgment that Alzheimer's disease is chronic
(long-lasting) and eventually fatal.
patient's level of disability and discomfort will at
some point exceed their quality of life.
that the patient's physical, emotional, and
spiritual comfort are the most important things—even
when a doctor says "We must...."
That only the
people empowered to decide for the patient can
really evaluate what is best for the patient in
light of what the patient would have wanted.
That life is
finite (has an end).
Palliative care is not necessarily something that
happens at the end of life. Many families take a
palliative care approach as soon as the diagnosis is
made by doing the following:
the patient is free of pain.
the patient participates in social, family, and
avoid behavioral outbursts by managing fatigue,
changes in routine and the environment,
inappropriate stimuli, etc.
preventive health measures such as flu shots,
medication administration, hand washing,
encouraging/participating in exercise, etc
patient to eat what they like.
communication strategies that do not correct, but
attention to safety in the least restrictive manner.
prevent acute hospitalization, non-essential
surgeries, etc. The American Association of Medical
Directors (of long term care programs) is now
proposing citing facilities who have too many
hospitalizations and transfers to other facilities
or within a facility. The idea is that once you are
living in a facility, you should be there for life.
educational seminars and caregiver support groups.
caregiver take care of themselves and encouraging
treatment for depression.
In other words,
palliative care focuses on quality of life, but
acknowledges that life ends....and with this awful
disease, promotion of survival to the point where
everyone must live long into the final stage when the
body shuts down—fighting it even then—is not necessarily
begin to look seriously at palliative care when the
patient is no longer walking or speaking much, and is
dependent for most activities. This begins with
questioning how aggressive the medical care should be,
with usually first questioning antibiotic use, use of
medications for things like cholesterol management, or
determining if surgery should be done for a fractured
hip. While our medical colleagues may press for "curing
reversible problems" or "preventing a stroke in the
future" (it is their job as an MD to do this), it is the
family's responsibility to determine how that fits into
Mom or Dad's value system, and recognize that Mom's
value system may be different than Dad's so they may be
treated differently. The challenge for the caregiver and
family is to remove themselves from consideration of
what they want. These decisions are not about family;
they are about the comfort of the loved one
Geri has been working with
families and dementia since 1978. A retired professor
from University of Iowa, Geri has been a consulting
professional to the Washington University, St. Louis
Alzheimer list for 13 years.
to our weekly e-newsletter