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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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