Neurologic disease at the end of life: caregiver descriptions of Parkinson disease and amyotrophic lateral sclerosis

J Palliat Med. 2008 May;11(4):548-54. doi: 10.1089/jpm.2007.0258.


Objective: Amyotrophic lateral sclerosis (ALS) is well recognized as a terminal illness with an established need for palliative care. Parkinson's disease is a substantially more common cause of death, yet little has been written about the palliative needs of these patients at the end of life. To highlight the palliative care needs and experiences of patients with Parkinson's disease and related disorders (PDRD), we compared them to patients with ALS.

Methods: Family caregivers of decedent PDRD and ALS patients in Oregon and Washington were surveyed about their loved one's symptoms, treatment preferences, health care usage, and psychosocial experiences during the last month of life.

Results: Fifty-two PDRD and 50 ALS caregivers completed the survey. Overall suffering (1 = none to 6 = severe) was rated a median of 4 for both groups. Pain was moderately severe or worse in 42% of PDRD patients and 52% of ALS patients; of these, 27% of PDRD and 19% of ALS patients received no pain medication in the last month. PDRD featured more severe effects of confusion than ALS, although less dyspnea and difficulty eating. PDRD patients had significantly shorter hospice enrollments than ALS patients (p < 0.01).

Conclusions: In the views of caregivers, suffering associated with ALS is no more severe than suffering associated with PDRD, and both groups appear to have unmet palliative care needs in the last months of life. Studies to define hospice readiness and special needs in hospice might improve end-of-life care for PDRD patients.

Publication types

  • Research Support, Non-U.S. Gov't
  • Research Support, U.S. Gov't, Non-P.H.S.

MeSH terms

  • Adaptation, Psychological
  • Aged
  • Amyotrophic Lateral Sclerosis* / mortality
  • Amyotrophic Lateral Sclerosis* / psychology
  • Caregivers / psychology*
  • Female
  • Humans
  • Male
  • Middle Aged
  • Oregon
  • Pain Measurement
  • Palliative Care / psychology*
  • Parkinson Disease* / mortality
  • Parkinson Disease* / psychology
  • Psychometrics
  • Surveys and Questionnaires
  • Washington