Promoting Excellence : ALS Executive Summary : Access to Care

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Basic access to health care should be universal, but it is not. Health care for patients with ALS is inadequate in many areas, especially at the end of life. End-of-life guidelines for hospice care and Medicare do not accurately reflect current standards of care. Limitations in care may be due, in part, to a lack of insurance coverage, lack of availability of knowledgeable physicians or inaccessibility to specialized centers.

Care provision in patients with ALS successively changes from a primary care physician, to a neurologist or an ALS specialist, and finally to a hospice setting. Ideally, patient care is best when maintained by all these providers throughout the course of the disease. However, in current practice several factors preclude access to specialized pre-terminal and end-of-life care.


Practice Recommendations

  • Develop individualized resource lists with the names and contacts of the management team, regional home care agencies, respiratory care companies and hospice services.
  • Improve management algorithms for patients with ALS at the end of life:
    • Implement existing algorithms for symptom management;
    • Create management algorithms for supportive care (e.g., skilled home nursing); and
    • Define standard of in-hospital care for patients with ALS.
  • Promote cooperation among community physicians, specialty centers and hospices to ensure continuity of care.
  • Refer patients to medical centers that provide optimal quality of care for the patient.
  • Make a timely referral to hospice.

Research Recommendations

  • Create management algorithms specifically for ALS:
    • Evaluate the impact of interdisciplinary versus community care approaches on patient outcomes.
    • Assess barriers to adherence to algorithms and established standards of care processes.
  • Study optimal timing of referral to hospice:
    • Develop criteria for appropriate referral to hospice; and
    • Examine the effect of the patient's attitudes and decisions for selecting or not selecting hospice.

Policy Recommendations

  • Provide funding for and develop regional Centers of Excellence specific for patients with ALS. Develop the model at these centers for promoting access of effective and optimal care for patients with ALS during the end of life.
  • Modify Medicare guidelines for admission to hospice based on specific needs of patients with ALS-include approving use of assistive devices, non-invasive positive pressure ventilation (NIPPV) and physical therapy, among others.
  • Establish a comprehensive reimbursement program for patients to cover:
    • Hospitalization (i.e., 48-hour hospitalization for percutaneous endoscopic gastrostomy [PEG]),
    • Medications during the end of life,
    • Assistive devices,
    • NIPPV,
    • Physical therapy, and
    • Home care, hospice care and respite services.
  • Develop end-of-life management algorithms for ALS. Specific areas of debate include establishing a policy regarding hospitalization and medications usage and encouraging existing policies to be comprehensive and adequate (e.g., 48-hour hospital stay for PEG placement).
  • Institute coverage of case management services to coordinate care across specialties.

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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.

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