Promoting Excellence : ALS Report to the Field : Access to Care


аи Executive Summary
аиаReport to the Field

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:

  • Physical therapy (range of motion and massage) to decrease spasticity and pain;
  • Respiratory therapy/respiratory technician services for advice on use of suction machines, ventilators and adjustment of non-invasive positive pressure ventilation/ventilator settings;
  • Home social work services for education about availability of resources and counseling regarding loss/grief issues;
  • Home health aides for custodial care that may involve bathing and transferring;
  • Bereavement programs for caregivers; and
  • Long-term care insurance coverage.

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.

Ventilator Patients

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

Practice Recommendations

  • Develop individualized resource lists with 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; and
    • 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, NIPPV and physical therapy, among others.
  • Establish a comprehensive reimbursement program for patients to cover:
    • Hospitalization (i.e., 48-hour hospitalization PEG placement),
    • 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 for more resources.

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