Identification of Existing Gaps
Education of patients, families and health care providers needs 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. Frequently, inexperienced health care providers are caring
for patients with ALS in whom the highly complex medical and technical needs
require considerable experience. 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
Recommendations to the Field
- 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.
- 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 among
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
- Influence health policy agencies, the AAN and other national organizations
and foundations to support educational programs on end-of-life care in
- Increase funding for educational interventions and research surrounding
end-of-life issues for the patient and their caregivers.