End of Life Care for a Person With Parkinson Disease

1. End of Life Care for a Person WithParkinson Disease Recent Research and Clinical Implications

2. Parkinson Disease • ~1.5 million in USA currently diagnosed • 60,000 new cases diagnosed/year • Progressive loss of neuronal cells in the substantia nigra • progressive motor decline and nonmotor complications • Cause unknown, probably multifactorial. • No current cure • Average length of living with PD 14.6 (9.8) years

3. Motor Complications of Late Stage PD (Hoehn-Yahr Stage 5) • Freezing • Rigidity • Dyskinesia • Dysarthria • Dysphagia • Respiratory problems • Less responsive to dopaminergic medicines

4. Nonmotor Complications of Late Stage PD (Hoehn-Yahr Stage 5) • Cognitive slowing • Dementia – 40% develop in late stages • Psychosis/hallucinations • Depression, anxiety • Dysregulation of blood pressure • Dysregulation of bowel/bladder - constipation • Sleep disturbance

5. Four StagesMacMahon et al. 1999 • Diagnosis 1.6 (1.5) • Maintenance 5.9 (4.8) • Complex 4.9 (4.4) • Palliative 2.2 (2.2) • intolerance of dopaminergic therapy • unsuitable for surgery • advanced co-morbidity

6. Palliative Care • Care shifts from life-prolonging to comfort measures • Relief/control of symptoms: analgesia, sedation, maintenance of dignity • Avoiding iatrogenic effects of treatment • Prevention of falls, pressure sores

7. Is PD a Cause of Death? • Severity of Parkinsonism • Dementia • Fractures • Thromboses • Infections (lung, urinary tract)

8. Last Month of Life CAREGIVERS (N = 52): • Caucasian (92%) • Female (77%) • Spouses (64%) • Mean age 68 years • Mean length of bereavement 20 months • Had known the decedent, on average, for 49 years.

9. Last Month of Life LOVED ONES WITH PD: • Caucasian (98%) • Males (79%) • Mean age of 78 years at time of death. • Died primarily of PD with complications including pneumonia, falls with injuries, urinary tract infections, or dementia. Six had substantial cardiopulmonary disease, but the caregiver reported PD caused the most disability.

12. Difficulty Eating • Difficulty eating/dysphagia • Increased choking hazard • Benefits vs. Discomforts of artificial feeding • Appetite not well described in PD

14. Goals of Care • 15% (8) were unable to state loved one’s goals of care. • 48% of the patients were described as unable to make any decisions in the last month of life. • Caregivers rated less satisfaction with answers received from health care professionals as patient confusion increased in frequency, patients had greater impairment of decision-making ability during the last month of life, and as a trend, when communication problems were increasingly severe.

15. Recommendations for Clinical Care Providers • Discuss Goals of care regarding artificial food/hydration early and more than once (goals may change). • Collaborative, patient-centered process. • Steer patient/family to consider who will be proxy for decisionmaking and to have proactive conversations. • Patients and family caregivers need more information about what to expect in order to plan ahead. • Other Topics: advance directives, pain management, treatment for infections, hospitalization/long term care, resuscitation, implications of swallowing problems, behavioral disturbance, dementia.

16. Goals of Care • 87% had a health care proxy and 92% had a living will. • 79% wanted comfort care, 6% life-prolonging • CPR was not performed on any patient, • 26% were fed by tube and • 30% received some type of breathing support. • Most (74%) felt wishes regarding medical treatments were followed.

17. Median Severity = 4 • 42% (n = 20) rated pain as severe (4-6) • Of those, 30% (n = 6) received NO pain medication in the last month.

18. Pain in PD • Musculoskeletal causes – ache around joints, limbs. Muscle rigidity and spasms. • Trapped spinal cord nerves – sharp shooting pain, numbness/tingling, burning. • Motor complications • Limb rigidity • dystonia • Nonmotor complications. • Altered nociception from the basal ganglia.

20. Recommendations for Clinical Care Providers • Educate patients and families about pain and types of treatments available early and repeatedly. • Assess for pain as standard of care. • Consider possible nonverbal indices of pain • Groaning • Agitation • Tearfulness. • Weigh benefits of pain control against cognitive compromise at end of life.

21. Caregivers also felt less prepared for the stress of caregiving as severity of patient confusion increased.

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24. Caregiver Assistance to Loved One • Assisted with a mean of 13 possible activities of living in the last months of life, a mean of 6 hours per day. • Tasks requiring physical effort were rated the most difficult. • One third or more of respondents did not feel prepared to cope with the stress of caregiving, cope with the patient’s physical needs, or handle emergencies. • Caregiving scenarios that included responsibility for light and heavy housework, and assisting the patient with moving, dressing, and transportation were associated with increasing frequency of patient anxiety (p< .001-.007).

25. Supportive Services to Caregiver • 36% got supportive care from home health agency. • 43% hired private aide. • Only 11 caregivers (21%) reported that other family members helped provide primary care to the patient during the last month.

26. Recommendations for Clinical Care Providers • Patients with depression, falls, hallucinations, disability increase caregiver burden, which leads to increased caregiver disability and depression. • Finding meaning in life (not necessarily in caregiving) predicts coping better with role. • Greater efforts to enlist additional family members into caring network. • Shore up aid to caregivers for highly physical challenges • Private aides • Adaptive tools • Respite care.

27. Services, Treatments during Final Month • Fifty-six percent of PDRD caregivers reported that their loved one received hospice care, for a median of three weeks • More likely to receive pain medication in hospice.

28. Hospice • Satisfaction with hospice care was at the top of the ranking for satisfaction with health care (24 of the 29 who received hospice were satisfied or very satisfied). • Among the patients enrolled in hospice, increasing severity of complicated grief was correlated with satisfaction with hospice (p = .002). • Increasing satisfaction with information provided about symptom management was associated with greater satisfaction with hospice services (p < .01).

29. Long Term Care • Forty percent of PDRD patients died while in a skilled nursing or other long term care facility; only one in four died at home. • Nine PDRD residents of long term care facilities died without any significant family or friends in attendance, while all who remained at home had at least one significant person with them (p = .006).

30. Lonnie Ali • Fight for more: My husband and I focus on what he can do, not what he can’t do. • Stay connected: If you don’t have family support, stay connected with friends…community. • Educate yourself: Empower yourself with knowledge • See a PD specialist regularly. • Take care of you: Clear your head and come back with renewed energy. • Trust your instincts: Don’t be afraid to ask questions. (FightForMore.com)

31. Acknowledgments • Linda Ganzini MD, MPH • Julie Carter RN, MS • John Nutt MD • Molly Delorit BA • Bryant Carlson MDiv, MS • OHSU Foundation MRF support • HSR&D Career Development Award • HSR&D Columbia Center for the Study of Chronic and Comorbid Physical and Mental Disorders