Promoting Excellence : ALS Executive Summary : Ethics

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The ethical basis and legal status of most end-of-life decisions pertinent to ALS have been established. Accepting, forgoing or withdrawing life-sustaining interventions are actions common in ALS, but the decision making involves consideration of values and beliefs that may not have been previously explored by those affected by the disease, including the physicians. Moreover, debates concerning euthanasia and physician-assisted suicide have prominently featured patients with ALS. Thus, ethical issues in caring for patients with ALS are sensitive; many physicians are not comfortable addressing end-of-life issues because of the perceived ethical complexity. One of the most difficult issues surrounding the end of life is physician-assisted suicide. Some physicians, however, have difficulty differentiating accepted clinical practices from physician-assisted suicide and euthanasia. In avoiding topics of euthanasia and physician-assisted suicide, physicians may be avoiding appropriate discussions of good end-of-life care and consequently not providing appropriate palliative care. A gap exists between available guidelines and clinical practice since guidelines are not uniformly implemented across all areas of palliative care in ALS.


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 PromotingExcellence.org for more resources.

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