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.
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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.