Promoting Excellence : ALS Executive Summary : Education

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In recent years, public awareness of ALS has greatly improved. The American Academy of Neurology (AAN) and voluntary health organizations, such as ALSA and The Muscular Dystrophy Association (MDA), have contributed significantly to improving the overall education of physicians and policy-makers. However, continued educational programs for patients, families and health care providers need to be improved in the area of end-of-life care in general, but specifically about PEG, NIPPV, treatment of pain/suffering, use of riluzole, other symptom management strategies, home care and long-term care options such as hospice admission criteria and hospice services.

Physician education is still needed regarding enhancement of communication skills and decision making at the end of life, education about the use and subsequent discontinuation of PEG and placement and removal of NIPPV, management of pain, suffering and symptoms at the end of life, and effective use of home care services, long-term care options and hospice services. Frequently, inexperienced health care providers are caring for patients who have highly complex medical and technical needs. Health care providers need to be educated about the importance of hospice care and the Practice Parameter. Treating physicians need to be aware of the importance of the family milieu in caring for patients with ALS. In addition, knowledge of ALS support services available in the community needs to be enhanced. In particular, health care providers need to improve their knowledge and increase the frequency of referral of families to local ALS support services that have the potential to improve quality of life. For example, facilitating access to a local organization that can provide patients with ALS with a communication device can be immensely helpful to patient and family.


Practice Recommendations

  • Utilize evidence-based guidelines (Practice Parameter) for care needed during the end of life.
  • Educate clinicians, families, caregivers and all stakeholders in ALS about the complexity of care needed during the end of life.
  • Educate physicians, using knowledgeable interdisciplinary ALS center team members, regarding Medicare denial, the appeals process, letters of medical necessity for durable medical equipment, Social Security guidelines regarding disability benefits and benefits for war veterans.
  • Ensure each ALS health care provider has a list of durable medical equipment and templates for letters of medical necessity in order to reduce denials and facilitate timely insurance coverage of medically necessary services and equipment for patients with ALS.
  • Develop tools/models for the education of all health care providers/patients/families by experienced personnel from interdisciplinary ALS centers.
  • Ensure timing of referrals to hospice:
    • Educate patients and health care providers regarding criteria and value of hospice; and
    • Educate patients and caregivers regarding hospice guidelines.

Research Recommendations

  • Identify areas where knowledge among physicians is lacking in caring for patients at the end of life.
  • Design new education and training programs to improve the knowledge base of physicians caring for patients with ALS at the end of life.
  • Assess community practices relevant to ALS, especially pertaining to the end of life. This includes conducting regular audits of community and tertiary care practices and identifying specific educational needs between both health care providers and consumers.
  • Develop and implement educational intervention initiatives relative to end-of-life practices. The outcome benefits of these educational interventions should be studied to ensure their value in improving the end of life for patients and their caregivers.

Policy Recommendations

  • Influence health policy agencies, the AAN and other national organizations and foundations to support educational programs on end-of-life care in ALS.
  • Increase funding for educational interventions and research surrounding end-of-life issues for patients and their 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.

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