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Five Ways to Help Families
Physicians can help family members caring for dying
loved ones
Jan. 28, 2004 - Physicians have five areas of
opportunity to be of service to family members caring for patients at
the end of life, according to a UCSF Medical Center palliative care
expert.
The recommendations appear in the January 28, 2004
issue of the Journal of the American Medical Association (JAMA), in a
section titled Perspectives on Care at the Close of Life, co-edited by
UCSF clinician/researchers.
These interventions include promoting good
communication with family members, encouraging appropriate advance care
planning and decision-making, supporting home care, demonstrating
empathy for family emotions and relationships, and attending to family
grief and bereavement.
"In caring well for family caregivers at the end of
life, physicians may not only improve the experiences of patients and
family, but also find greater sustenance and meaning in their own work,"
said Michael Rabow, MD, an internal medicine and palliative care
specialist at UCSF Medical Center. Rabow is the lead author of the new
evidence-based discussion of a challenging palliative care case, titled
Supporting Family Caregivers at the End of Life: They Don't Know What
They Don't Know.
He explained that death in the United States is
increasingly preceded by informal support and lay medical care provided
by family members, partners and friends.
"About one quarter of adults in the United States
report providing informal caregiving, including helping with
transportation, shopping, house work, emotional support, nutritional
care, personal care and financial management," he said.
"Because this trend is likely to continue because
of the aging United States population and the increasing number of
diseases managed over many years in outpatient settings, physicians need
specific training in how to assist families with end-of-life care."
Given the documented financial, emotional and
physical costs of family care giving, including increased mortality for
caregivers, the authors have the following recommendations for
physicians:
1) Listen carefully to family members and provide
proactive guidance, particularly when the patient is no longer able to
make decisions about his or her own health care. This includes sharing
data on the efficacy of feeding tubes and cardiopulmonary resuscitation
in relevant situations and explaining the role of hospice. Ultimately,
physicians have a role in helping families come to understand what their
loveD one's medical care signifies "including the particular family's
definitions of doing everything," "giving up," or "letting go," said
Rabow.
2) Facilitate advance care planning. This may
include discussion with the family members about preferences, values and
goals for end-of-life care. Physicians can also encourage family members
to explore legal advance directives, the naming of a health care proxy,
the execution of a living will, and plans for autopsy, organ donation,
funerals and disposition of possessions. Advance care planning is not a
static document or set of instructions, but rather an ongoing process
and an opportunity to engage with families and patients, he said.
3) Be part of the interdisciplinary home care team
that provides caregivers with orientation, information, training and
support. He explained that family caregivers are medical team
representatives in the home, providing medical services and assessments,
including complex decisions about when to call the physician or bring
the patient to the Emergency Room - all with little preparation,
training or compensation. Specifically, physicians should give
caregivers careful instructions about medication and how to convey their
loved one's wishes about advance care directives if it is necessary to
call for emergency help, Rabow said. He added that physician home visits
have been shown to improve patient quality of life and delay nursing
home admissions.
4) Have empathy for family emotions and
relationships. In particular physicians must recognize that adult
children frequently assume responsibilities for ill parents and may have
to adjust the expectations within their own nuclear families, according
to Rabow. He added that family members may find themselves re-acquainted
with long-estranged relatives, which may also escalate emotions and
strain relationships. Physicians can be helpful in recognizing and
validating common feelings and helping family members identify necessary
support services, said Rabow.
5) Pay special attention to grief and bereavement
following death of a loved one. According to Rabow, grief worsens both
physical and mental health and it has been associated with increased
depression, insomnia, substance abuse, suicide and mortalilty in family
members. He added that bereaved family members highly value a physician
condolence telephone call, letter, or visit, as well as attendance at
the patient's funeral and that this support may improve bereavement
outcomes.
"Dame Cicely Saunders, a pioneer in the modern
palliative care movement once said, 'How people die remains in the
memories of those who live on,'" said Rabow.
"Given that observation, physicians have a special
responsibility and a fundamental opportunity to support the profound
experiences of family care giving."
Additional authors of these recommendations include
Joshua Hauser, MD, from the Feinberg School of Medicine at Northwestern
University and Jocelia Adams, RN, director of the Center for Caregiver
Training in San Francisco.
The JAMA series on end-of-life care is produced
with the support of the Robert Wood Johnson Foundation. In addition to
Rabow, the series is co-edited by Stephen McPhee, MD, UCSF professor of
medicine and Steven Pantilat, MD, UCSF associate professor of medicine.
JAMA section editor is Margaret Winker, MD.
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