Promoting Excellence : ALS Report to the Field : Ethics


аи Executive Summary
аиаReport to the Field

Identification of Existing Resources

The ethical basis and legal status of end-of-life decisions pertinent to ALS were recently reviewed (Bernat, 2001) and specifically addressed in the Practice Parameter (Appendix F). Yet ethical issues in caring for patients with ALS are sensitive, and many health care providers are not comfortable with ethically charged decision making.

One of the most difficult discussions surrounding the end of life relates to physician-assisted suicide. Both anecdotal reports and systematic studies indicate a high level of interest in physician-assisted suicide and euthanasia in patients with ALS (American Academy of Neurology Statement 1998). Physician-assisted suicide is illegal in most U.S. jurisdictions, and euthanasia is illegal in all U.S. jurisdictions and in most parts of the world. Some health care providers, however, have difficulty differentiating accepted clinical practices (medication use for symptom relief, including sedation and palliative medicine) from physician-assisted suicide and euthanasia (Carver et al., 1999). In avoiding topics of euthanasia and physician-assisted suicide, physicians may be avoiding appropriate discussion of good end-of-life care and consequently not providing appropriate palliative care, including medications. Continued discussions are needed among health care providers, the patients and caregivers regarding end-of-life issues specific to palliative care.

Identification of Existing Gaps

There is a gap between knowledge and practice regarding ethical and legal practices at the end of life. Guidelines published in medical journals do not penetrate all areas of clinical practice. The reasons for the lack of implementation of treatment guidelines and the difficulty of putting theory into practice are not known.

Recommendations to the Field

Practice Recommendations

  • Implement evidence-based guidelines for terminal care in patients with ALS (Miller et al., 1999).
  • Identify and monitor conflicting issues associated with end-of-life care including conflicts among family members and with health care providers. Intervene early to resolve conflicts and use counseling services, among other support systems, so end-of-life care is agreed upon and a plan is established in advance. Clarify ethical and legal issues with an ethics committee or legal counsel, as necessary.
  • Use questions regarding physician-assisted suicide and euthanasia as a trigger to discuss end-of-life care. Health practitioners need to provide explicit assurances of continuity of care and commitment to relieve suffering. This may be one of the most direct and first triggers to discussing end-of-life care. Physician-assisted suicide is not legal in 49 states; clinicians should not feel coerced to provide a lethal prescription.

Research Recommendations

  • Investigate the prevalence of the desire to end life, and evaluate interventions that obviate this desire.
  • Examine the impact (outcomes) of the patient's end-of-life decisions on the overall quality of life during the terminal phase of the patient's illness, as well as the impact on the family and caregivers.
  • Develop a neurology Educating Physicians in End-of-Life Care (EPEC) module and assess the impact of its use on clinicians' knowledge and practice in end-of-life care of ALS.

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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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