Identification of Existing Resources
The literature published to date suggests that spiritual care is an integral component of palliative care (Appendix B). Addressing spiritual issues with patients is one that is personal, varied and has only recently been considered beneficial for terminally ill patients and their caregivers. Studies suggest that health care providers may encourage this aspect of care, and that they can be aware of the importance of spirituality and its impact on patients and caregivers.
It is likely that spiritual/religious attitudes influence decisions surrounding ongoing medical management and choices about end-of-life issues (e.g., implementing Advance Directives, use of technological interventions, withdrawing life support, physician-assisted suicide, autopsy and disposal of the body). The spiritual beliefs of the health care providers also can significantly impact their own comfort levels in managing certain end-of-life decisions (i.e., withdrawal of ventilation and use of opioids). Despite its influence, spirituality is almost never discussed with regards to supervision of health care providers.
Identification of Existing Gaps
Addressing spiritual issues of patients with ALS should be standard practice for health care professionals in ALS. Additionally, spiritual needs of caregivers and patients' families should be addressed, as these individuals will play a role in the patient's end-of-life decisions. Unfortunately, these concerns are rarely addressed-recognition is lacking that the role of spiritual/religious attitudes is relevant to end-of-life issues and palliative care in ALS. Many physicians and health care providers are not aware that spirituality has a significant impact on patients with terminal illnesses, such as ALS. Several tools address spiritual needs, and these are generally underutilized in caring for patients. Specific language and tools are needed to help initiate discussions on spirituality, because little work has been done on how to make spiritual care meaningful for patients with ALS. An interdisciplinary team that includes addressing spiritual care of patients may be of significant value to patients and their families.
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.