End of Life Care for a Person With Parkinson Disease

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End of Life Care for a Person WithParkinson
Disease

• Recent Research and Clinical Implications

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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

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Motor Complications of Late Stage PD (Hoehn-Yahr
Stage 5)

• Freezing
• Rigidity
• Dyskinesia
• Dysarthria
• Dysphagia
• Respiratory problems
• Less responsive to dopaminergic medicines

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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

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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

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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

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Is PD a Cause of Death?

• Severity of Parkinsonism
• Dementia
• Fractures
• Thromboses
• Infections (lung, urinary tract)

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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.
  

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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.

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Difficulty Eating

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

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Goals of Care

• 15 (8) were unable to state loved ones 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.

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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.

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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.

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• 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.

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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.

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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.

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

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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 patients 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 (plt .001-.007).

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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.

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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.

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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.

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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 lt .01).

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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).

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Lonnie Ali

• Fight for more My husband and I focus on what he
  can do, not what he cant do.
• Stay connected If you dont have family support,
  stay connected with friendscommunity.
• 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 Dont be afraid to ask
  questions.
• (FightForMore.com)

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Acknowledgments

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

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