Identification of Existing Resources
Basic access to health care should be universal, but it is not. For an overview of programs currently in place that address resource availability and access to care, refer to Appendix E.
Identification of Existing Gaps
There are many areas where the current system of availability of and access to health care for ALS patients and families is inadequate, both with advanced disease and at the end of life. Guidelines for hospice care and Medicare do not accurately reflect current knowledge and practice regarding the disease. Gaps in effective care may be due mainly to lack of insurance coverage and lack of knowledgeable care providers/facilities.
Lack of continuity of care across the ALS disease spectrum (from primary care to ALS centers/specialty neurology practitioners to hospice) is largely the result of an absence of case management services. When there is no single person ensuring that all health care issues are being addressed and providers are communicating with one another, patient care is often fragmented, needs are often overlooked or efforts are duplicated. Use of an interdisciplinary team approach is clearly needed.
The following are areas for which there is inadequate coverage or a need exists for guidelines or equipment.
Health Care Provider Services
There is a need for continuing:
Home Nursing Care
There is no coverage of unskilled nursing for PEG feeding. There are no available ALS-specific guidelines regarding use of pulse oximetry or non-invasive positive pressure ventilation (NIPPV) settings, and nutritional care/feeding.
There is a dire need for coverage of in-home care of patients with ALS using
NIPPV, tracheostomy or mechanical ventilation. Uncovered areas include: skilled
nursing, home health aide, respiratory therapist (which is most often covered
in the price of rental equipment), physical therapist, technical support and
back-up ventilator and power source. Even when insurance approves in-home skilled
nursing services, many families are unable to find trained staff due to the
severe nursing shortage nationwide. Further, only a small number of facilities
exist nationwide that provide residential in-patient, end-of-life palliative
care specifically targeted for patients with ALS.
Admission to Hospice
Medicare and other insurers lack correct information regarding markers for the end of life in ALS. As such, the hospice referral guidelines are inappropriate and hospice intake forms do not ask the questions that accurately reflect the ALS patient's condition. Thus, Medicare criteria for admission to hospice are too restrictive. Consequently, patients with ALS are being referred to hospice too late in their disease course and are thus denied the supportive services that hospice offers.
Recommendations to the Field
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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.