Promoting Excellence : ALS Executive Summary : Bereavement

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Bereavement in ALS has unique features because both the patient and the family grieve. The patient grieves over the lost function. The caregiver grieves over their loss of independence as the disease progresses. The family grieves in the traditional manner at the time of death. Although there are many resources on bereavement for other diseases, there is limited information about the specific bereavement process in patients with ALS and their caregivers.


Practice Recommendations

  • Offer bereavement support, informally or formally, for the patient and caregiver during the clinic visit.
  • Offer bereavement support for the caregiver after the death of the patient, including letters of condolence at the time of death.

Research Recommendations

  • Determine the scope of bereavement in ALS and whether there are differences between ALS and other diseases, such as cancer.
  • Assess whether specialized ALS support groups are needed, and if they confer specific benefits.

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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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