Patients with debilitating chronic diseases are increasingly cared for at
home. According to the North American ALS CARE Database, 63 percent of patients
die at home, and thus, the family becomes the principal caregiver. Recent data
indicate that caregivers endure mental distress from caring for patients. Patients
and caregivers have high concordance in distress and depression. There are
no studies that assess the risk of distress, the burden of caregiving or the
support caregivers may require.
- Interview experienced caregivers to identify psychosocial issues
that must be addressed.
- Establish support services for caregivers
including psychiatric guidance and counseling,
support groups that emphasize educational initiatives, hands-on training
programs and wellness-promoting behaviors.
- Develop a crisis management
system for caregivers in ALS clinics, including an ALS
caregiver telephone hotline available 24 hours per day.
spiritual education training and intensive psychosocial support readily
(including home visits), and offer these services to all caregivers
during the end-of-life
- Study whether proactive intensive psychosocial care reduces caregiver
burden and distress,
enhances caregiver wellness and improves the quality of life of patients.
an instrument that can quantify caregiver burden and distress.
the medical economics of family caregiving, and expand the evidence base
for supporting insurance reimbursement for family caregiver costs.
- Reimburse the cost incurred by physicians who provide supportive
care for caregivers.
- Using organized lobbying approaches, improve
financial support and reimbursement for the costs assumed in caring for
patients with ALS during
the end of life (e.g., Medicare reimbursement).
- Improve financial/insurance
coverage for psychosocial intervention in the home.
- Encourage hospices
to provide universal social work coverage for all families (current policies
allow nursing support to families, but many
hospices assign social work coverage only to those families deemed at particular
risk and do not provide counseling to the majority of caregivers).
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Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.