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RCD 04-326 – HSR Study

RCD 04-326
Parkinson's Disease at End of Life: Symptoms, Needs & Mortality
Elizabeth R. Goy, PhD
VA Portland Health Care System, Portland, OR
Portland, OR
Funding Period: October 2006 - September 2011
End-of-life care is a VA priority, and referral to hospice is associated with improved quality of dying. Little is known about dying with Parkinson's disease (PD), and timely referral to hospice remains complicated by difficulty recognizing the threshold of a six month prognosis.

1) Analyze pilot data from caregivers of decedent PD patients; 2) Ascertain which events are more likely to uniquely precede 6-12 months prior to death from PD when compared to the 18-24 month period; 3) Complete an HSR&D evidence synthesis project (ESP); and 4) Develop a proposal for a prospective study examining hypotheses from pilot data about patient needs in end-stage PD.

A manuscript is being submitted based on data from Objective 2, a retrospective study of decedent Veteran PD patients. The measures reflect either frequency (bivariate and categorical variables) or amount (continuous variables) for three 6-month time periods: 6-12 months, 18-24 months, and 30-36 months before death. We identified 534 VISN 20 decedent patients diagnosed with PD and treated with VA dopaminergic prescriptions for at least 3 years, using the VISN 20 Data Warehouse (VDW). Medical record review by a physician excluded those who died from causes other than PD. We compared amount and severity of suspected markers during the 6-12 month and 18-24 month periods using generalized linear models, controlling for repeated measures. We defined variables as relevant to hospice referral when they changed significantly in the 6-12/18-24 month comparison, but not between 18-24/30-36 months.

Not yet available.

End-of-life information about PD was disseminated to health care providers through publications and national meetings. Physicians' confidence in referring PD patients for hospice may improve, and Veterans with PD and their families may benefit from earlier appropriate hospice care. My overall program of research on late stage neurological disorders serves the VA missions of providing the highest quality of medical care, and increasing quality of life at the end of life through appropriate palliative and hospice interventions.

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Journal Articles

  1. Ganzini L, Goy ER, Dobscha SK, Prigerson H. Mental health outcomes of family members of Oregonians who request physician aid in dying. Journal of pain and symptom management. 2009 Dec 1; 38(6):807-15. [view]
  2. Goy ER, Carter JH, Ganzini L. Needs and experiences of caregivers for family members dying with Parkinson disease. Journal of palliative care. 2008 Jan 1; 24(2):69-75. [view]
  3. Goy ER, Carter J, Ganzini L. Neurologic disease at the end of life: caregiver descriptions of Parkinson disease and amyotrophic lateral sclerosis. Journal of palliative medicine. 2008 May 1; 11(4):548-54. [view]
  4. Ganzini L, Goy ER, Dobscha SK. Oregonians' reasons for requesting physician aid in dying. Archives of internal medicine. 2009 Mar 9; 169(5):489-92. [view]
  5. Goy ER, Carter JH, Ganzini L. Parkinson disease at the end of life: caregiver perspectives. Neurology. 2007 Aug 7; 69(6):611-2. [view]
  6. Goy ER, Ganzini L. Prevalence and natural history of neuropsychiatric syndromes in veteran hospice patients. Journal of pain and symptom management. 2011 Feb 1; 41(2):394-401. [view]
  7. Ganzini L, Goy ER, Dobscha SK. Prevalence of depression and anxiety in patients requesting physicians' aid in dying: cross sectional survey. BMJ (Clinical research ed.). 2008 Oct 7; 337:a1682. [view]
  8. Goy ER. Review: supportive interventions may improve short-term psychological distress in informal caregivers of patients at the end of life. Evidence-Based Mental Health. 2012 Feb 1; 15(1):21. [view]
HSR&D or QUERI Publications

  1. Goy ER, Freeman M, Kansagara D. A Systematic Evidence Review of Interventions for Non-professional Caregivers of Individuals with Dementia. 2010 Oct 28; 1(1). [view]
Center Products

  1. Goy ER. Depression, Suicidal Ideation and Wish for Hastened Death. 2011 Jun 7. [view]
  2. Goy ER. Nutrition and Hydration at End of Life and the Associated Psychosocial Related Issues. 2010 Jul 20. [view]
Conference Presentations

  1. 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. [view]
  2. Goy ER, Carter JH, Ganzini L. Parkinson's Disease at the End of Life: Caregiver Views. Poster session presented at: American Academy of Neurology Annual Meeting; 2007 May 1; Boston, MA. [view]
  3. Goy ER, Ganzini LK. Prevalence and Natural History of Neuropsychiatric Syndromes in Veteran Hospice Patients. Poster session presented at: VA HSR&D National Meeting; 2009 Feb 13; Baltimore, MD. [view]
  4. Kasl-Godley J, Goy ER, Carpenter B. Psychologists in End-of-Life Care: A Case for Palliative Care Competencies. Paper presented at: American Psychological Association Annual Convention; 2010 Aug 14; San Diego, CA. [view]
  5. Goy ER, Ganzini L. Recognizing Hospice Eligibility in Parkinson’s Disease. Poster session presented at: VA HSR&D National Meeting; 2011 Feb 1; Baltimore, MD. [view]

DRA: Aging, Older Veterans' Health and Care, Neurodegenerative Diseases
DRE: Pathology
Keywords: none
MeSH Terms: none

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