End of Life Care for a Person
With
Parkinson Disease
Recent Research and Clinical
Implications
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
Motor Complications of Late Stage
PD (Hoehn-Yahr Stage 5)
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Freezing
Rigidity
Dyskinesia
Dysarthria
Dysphagia
Respiratory problems
Less responsive to dopaminergic
medicines
Nonmotor Complications of Late
Stage PD (Hoehn-Yahr Stage 5)
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Cognitive slowing
Dementia – 40% develop in late stages
Psychosis/hallucinations
Depression, anxiety
Dysregulation of blood pressure
Dysregulation of bowel/bladder constipation
• Sleep disturbance
Four Stages
MacMahon et al. 1999
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Diagnosis
Maintenance
Complex
Palliative
1.6 (1.5)
5.9 (4.8)
4.9 (4.4)
2.2 (2.2)
– intolerance of dopaminergic therapy
– unsuitable for surgery
– advanced co-morbidity
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
Is PD a Cause of Death?
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Severity of Parkinsonism
Dementia
Fractures
Thromboses
Infections (lung, urinary tract)
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.
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.
Table 1. Caregiver Ratings of PD (N = 47) Patient Symptoms in the Final Month of Life
Frequency*
N (%) Rated
N (%) Rated Symptom
(Median, IQR)
Symptom Moderate
“Quite a Bit,” or “Very
or Severe
Much” Bothersome
3 (3,4)
34 (72.3)
23 (48.9)
Communicating
3 (2,4)
37 (78.7)
32 (68.1)
Physical Discomfort
3 (2,3)
33 (70.2)
19 (40.4)
Insomnia
2 (1,3)
22 (46.8)
16 (34.1)
Shortness of Breath
2 (1,3)
24 (40.0)
15 (31.9)
Choking
2 (1,3)
22 (46.8)
18 (38.3)
Confusion
3 (2,4)
32 (68.1)
22 (46.8)
Depressed Mood
3 (1.5,3)
28 (59.6)
17 (36.1)
Anxiety
2 (1.75,3)
28 (59.6)
18 (38.3)
Symptoms
•
Difficulty Eating
Difficulty
* 1 = never, 2 = a few times, 3 = frequently, 4 = almost all the time, 5 = constantly.
Table 1. Caregiver Ratings of PD (N = 47) Patient Symptoms in the Final Month of Life
Frequency*
N (%) Rated
N (%) Rated Symptom
(Median, IQR)
Symptom Moderate
“Quite a Bit,” or “Very
or Severe
Much” Bothersome
3 (3,4)
34 (72.3)
23 (48.9)
Communicating
3 (2,4)
37 (78.7)
32 (68.1)
Physical Discomfort
3 (2,3)
33 (70.2)
19 (40.4)
Insomnia
2 (1,3)
22 (46.8)
16 (34.1)
Shortness of Breath
2 (1,3)
24 (40.0)
15 (31.9)
Choking
2 (1,3)
22 (46.8)
18 (38.3)
___________
______________
__________________
3 (2,4)
32 (68.1)
22 (46.8)
Depressed Mood
3 (1.5,3)
28 (59.6)
17 (36.1)
Anxiety
2 (1.75,3)
28 (59.6)
18 (38.3)
Symptoms
•
Difficulty Eating
Difficulty
_________________
Confusion
* 1 = never, 2 = a few times, 3 = frequently, 4 = almost all the time, 5 = constantly.
Difficulty Eating
• Difficulty eating/dysphagia
– Increased choking hazard
– Benefits vs. Discomforts of artificial feeding
– Appetite not well described in PD
Table 1. Caregiver Ratings of PD (N = 47) Patient Symptoms in the Final Month of Life
Frequency*
N (%) Rated
N (%) Rated Symptom
(Median, IQR)
Symptom Moderate
“Quite a Bit,” or “Very
or Severe
Much” Bothersome
3 (3,4)
34 (72.3)
23 (48.9)
Communicating
3 (2,4)
37 (78.7)
32 (68.1)
Physical Discomfort
3 (2,3)
33 (70.2)
19 (40.4)
Insomnia
2 (1,3)
22 (46.8)
16 (34.1)
Shortness of Breath
2 (1,3)
24 (40.0)
15 (31.9)
Choking
2 (1,3)
22 (46.8)
18 (38.3)
Confusion
3 (2,4)
32 (68.1)
22 (46.8)
Depressed Mood
3 (1.5,3)
28 (59.6)
17 (36.1)
Anxiety
2 (1.75,3)
28 (59.6)
18 (38.3)
Symptoms
•
Difficulty Eating
Difficulty
* 1 = never, 2 = a few times, 3 = frequently, 4 = almost all the time, 5 = constantly.
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 decisionmaking ability during the last month of life, and
as a trend, when communication problems were
increasingly severe.
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.
Goals of Care
• 87% had a health care proxy and 92% had
a living will.
• 79% wanted comfort care, 6% lifeprolonging
– 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.
Patient had
no physical
pain
Patient had
no physical
pain
1
1
2
2
3
3
4
4
5
5
Patient had,
6
at times,
severe
physical pain
6
Patient had
constant
physical
pain
• 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.
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.
Table 1. Caregiver Ratings of PD (N = 47) Patient Symptoms in the Final Month of Life
Frequency*
N (%) Rated
N (%) Rated Symptom
(Median, IQR)
Symptom Moderate
“Quite a Bit,” or “Very
or Severe
Much” Bothersome
3 (3,4)
34 (72.3)
23 (48.9)
Communicating
3 (2,4)
37 (78.7)
32 (68.1)
Physical Discomfort
3 (2,3)
33 (70.2)
19 (40.4)
Insomnia
2 (1,3)
22 (46.8)
16 (34.1)
Shortness of Breath
2 (1,3)
24 (40.0)
15 (31.9)
Choking
2 (1,3)
22 (46.8)
18 (38.3)
Confusion
3 (2,4)
32 (68.1)
22 (46.8)
Depressed Mood
3 (1.5,3)
28 (59.6)
17 (36.1)
Anxiety
2 (1.75,3)
28 (59.6)
18 (38.3)
Symptoms
•
Difficulty Eating
Difficulty
* 1 = never, 2 = a few times, 3 = frequently, 4 = almost all the time, 5 = constantly.
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.
• Caregivers also felt less prepared for the
stress of caregiving as severity of patient
confusion increased.
Toileting
24
Out of Bed/Chair
19
Bathing
19
Moving
10
Heavy Housework
10
Transportation
8
Dressing
8
Medications
8
Communicating
6
Finances
6
Shopping
6
Light Housework
4
Telephone
4
0%
13
20
21
19
41
34
35
29
10
42
44
27
21
13
48
39
38
38
15
35
35
19
40
42
17
38
19
14
69
17
6
63
35
14
38
23
10%
25
23
25
12
Eating
20
48
15
Walking
Activity
31
23
29
20%
30%
40%
44
50%
60%
Difficulty Rating (% endorsing)
70%
80%
90%
100%
legend
Very hard
Somewhat-Pretty hard
Easy-Not too hard
Not done
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).
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.
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.
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.
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).
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).
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)
Acknowledgments
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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