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Goy ER, Carter JH, Ganzini L. Parkinson's Disease at the End of Life: Caregiver Descriptions. Poster session presented at: VA HSR&D National Meeting; 2007 Feb 22; Arlington, VA.
Objectives: To analyze the palliative care needs and experiences of patients with Parkinson’s disease (PD) during the last month of life, and to compare caregiver descriptions of PD and ALS patients at the end of life. Methods: Family caregivers of decedent PD patients were surveyed about their loved one’s symptoms, challenges, treatment preferences, health care usage, and psychosocial and family experiences during the last month of life; their responses were compared to those of 50 bereaved ALS family caregivers who had completed identical questions on an earlier survey. Results: Fifty-four PD caregivers completed the survey. In the last month of life, difficulty eating (78% reported frequent-to-constant) and communication impairments (63% frequent-to-constant) were the most common physical symptoms in PD patients and confusion (54% frequent-to-constant) and depressed mood (54% frequent-to-constant) were the most common psychological symptoms. Pain was of at least moderate severity in 44% of PD patients; of these one in four did not receive pain medication in the last month of life. Overall levels of suffering (range 1 = none to 6 = severe) were not significantly different between PD patients (median = 4) and ALS patients (median = 4). The PD patients were more severely affected by confusion than the ALS patients, though less affected by dyspnea and difficulty eating. Implications: Patients who die from complications of PD have substantial suffering that is similar in severity to suffering in ALS. PD patients are at risk for undertreatment of pain during the final month of life. Impacts: Patients severely affected by PD appear to have unmet palliative care needs. VA centers and other hospice providers can improve palliative care delivery by considering the unique trajectory of PD at the end of life
