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
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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.