Dying in a Personal Care
Home: Family Perspectives
Genevieve Thompson, RN PhD CHPCN(C)
Post-Doctoral Fellow, Manitoba Palliative Care
Research Unit
Source of funding
1
Outline
 Living and Dying in PCH
 Why is it Important to Assess Satisfaction?
 Research Protocol
 What Influences Family Satisfaction?
 Recommendations
2
Getting Older…
 By 2026, 1 in 5 persons will be over 65
years;
 91% of all individuals over 65 diagnosed
with at least 1 chronic condition;
 The disability rate for persons aged 65
and older is 40.5%;
 Aging of the population and advances in
medical technology mean many
individuals will be diagnosed and live
longer with once fatal diseases.
3
Living in PCH
 There are 9,291 Manitobans living in
PCH’s;
 5.6% of Manitobans 65 and older live in a
PCH but 23.9% of those 85 and older do;
 72% are female;
 The majority require maximum dependence
on nursing time for assistance with bathing
and dressing, feeding, treatments,
ambulation, elimination and support, and/or
supervision.
Manitoba Fact Book on Aging (Centre on Aging); Personal Care Home
Program- Manitoba Health Annual Statistics, 2001-2002.
4
Dying in PCH
 Rates of non-hospital deaths has slowly risen
in the last decade;
 Risk of dying in a nursing home increases
with age, living alone or lack of social
contacts, having some level of functional
impairment, and a diagnosis of dementia.
5
Location of Death - Manitoba
60
50
40
Hospital
LTC
Home Care
Palliative Care Unit
30
20
10
0
47.4%
Menec et al (2004)
24.0%
6.2%
6.7%
6
Dying in PCH
 Research evidence on the state of dying in
PCH is relatively sparse;
 Three studies in particular provide profound
insight into the realities of the dying
experience:



Forbes (2001)
Kayser-Jones et al (2003)
Hanson et al (2002)
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Family Satisfaction with Care
 Families play an important role as caregivers and serve
as formal and informal proxy decision makers;
 Families are recipients of care and who have their own
unique perspectives on the care delivered;
 Some preliminary evidence suggests when families care
needs are met they are more satisfied;
 Current research on family satisfaction with end-of-life
care contradictory.
8
“How people die remains in the memories of
those who live on”
Dame Cecily Saunders
9
Research Questions
1.
What are family members’ perceptions of the
quality of end-of-life care and their satisfaction
with end-of-life care in the LTC setting?
2.
What are the associations between resident
and family characteristics, systems
characteristics, quality of care and family
satisfaction with end-of-life care?
3.
What do family members identify as areas for
improvement in the quality of end-of-life care
provided in LTC facilities?
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Research Study Protocol
Letter of Invitation
sent to PCH Directors
Decline Participation
Agree to Participate
Letter of Invitation sent
to Eligible Family
Participants
No Contact Made
Wrong Address
Agree to Participate
No Response
N=38
N=12
N=404
N=87
Conduct Survey
Interview
Satisfied with Care
Focus Group
Dissatisfied with Care
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Focus Group
Data Collection - Measures
 Modified Toolkit of Instruments to Measure End
of Life Care (TIME)
(Teno et al., 2001)

An after-death bereaved family member interview
tailored for administration based on setting of
care.

Focus on measuring whether care met the needs,
expectations and satisfaction of family members;

38 questions measure seven different domains of
care.
12
Facility Characteristics (N=12)
 0 to 24 participants responding from each facility;
 Bed size ranged from 78 beds to 314 beds
(M=219.2, SD=65.8);
 8 non-profit and 4 proprietary facilities;
 7 non-denominational and 5 with religious
affiliations;
 All from suburban Winnipeg.
13
Family Respondent (N=87)
 Female (67.8%)
 Mean age 61.1 years
 Son’s, daughters (and in-laws) (73.5%)
 Visitation:

Daily (33.3%),

2 to 3 times/week (20.7%)

4 to 5 times/week (25.3%)

once a week or once that month (20.6%)
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Resident
Characteristics
Gender
Female
Male
Age
<80 years
81 -90 years
>91 years
Dementia or Alzheimer's
Yes
No
Medical Conditions
<5
>6
Number
Percent
53
34
60.9
39.1
17
42
28
19.5
48.3
32.2
47
40
54.0
46.0
50
37
57.5
42.5
15
Death Characteristics
Characteristics
Place of Death
PCH
Hospital
In transit to hospital
Transferred to Hospital in Last Month of Life
Yes
No
Number
Percent
75
11
1
86.2
12.6
1.1
26
61
29.9
70.1
43
29
15
49.4
33.3
17.2
5
82
5.7
94.3
Died in Preferred Place
Yes
No
Don't know
Registered with WRHA Palliative Care Program
Yes
No
Mean Number of Months Resident in PCH
29.6 months
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Drivers of Family Satisfaction
 Factors influencing satisfaction are multi-
faceted;
 Thompson (2007) noted that 77.4% of
variability in family satisfaction attributable to:





Contact and communication with nursing staff
Feeling that the HCA listened to concerns
Feeling they had received enough emotional
support
Providing consistent care
Care met expectations
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Significant Survey Findings
Variable
Mean Satisfaction
Score
Respondent Age
Retired
Death in LTC Facility
Death in preferred place
Clear who RN was
Staff talked about how might feel after
the death
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Significant Survey Findings
Variable
Mean Satisfaction Score
Presence of Other Symptoms
Transferred to hospital in last
month of life
Resident’s death a surprise
19
Areas of Focus Group Discussion
 There are 7 areas from the focus groups which
overlap with the survey findings:







Communication & Interaction with Care Providers;
Pain & Symptom Management;
Physician Presence & Contact;
Staffing & Staff Education;
Psychosocial, Spiritual, & Bereavement Support;
Transfer to Acute Care Facilities;
Advance Care Planning.
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1. Communication & Interaction with
Care Providers
 Importance of involving families in decision-
making.
 Communication around what to expect at the
end of life;

Sharing of information in a timely, sensitive
manner
 Providing emotional support to families;
 Compassionate, humanistic behaviors play a
key role.
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…when she [mother] was going through her
dying process, people would come in and
they would sit with me and they would talk
with me and that was the hairdresser, that
was the lady who brought the dogs, and you
know, so it wasn’t just the nursing staff… it
was wonderful for the family to have
someone show us that kindness.
22
Core Competency - Communication
 What are effective communication strategies
you could use with families in your care
environment?
 How do you share information with families?
Could it be improved?
 What are simple ways to show empathy?
 How can you involve family members in
decision-making?
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2. Pain & Symptom Management
 Pain management a cornerstone to ensuring
excellent care at the end of life;
 One barrier to pain management identified by
participants was the manner in which
medications were ordered;
 ‘Other’ symptoms require attention and
management (i.e delirium, restlessness,
agitation, loneliness).
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Pain & Symptom Management
80
70
72.3%
69.5%
71.8%
56.5%
60
50
43.4%
Yes
No
40
30.5%
27.7%
30
28.2%
20
10
25
0
Pain
Trouble Breathing
Anxiety or Sadness
Other Symptoms
Discussion Point – Pain & Symptom
Management
 How could you address family concerns
about inadequate/too much pain medication?
 As a health care aide you are concerned the
person you are caring for is in pain, how do
you approach the nurse?
 As a nurse, you are concerned the pain
medication order is not adequate, how do you
discuss this with the physician?
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3. Physician Presence & Contact
 Concern over lack of continuity and
frustration over the limited contact with the
physician;
 Highest area of unmet need identified by
family members (84%).
27
Physician Contact
90
82.8%
82.6%
80
70
57.5%
Percentage of Respondents
60
50
42.5%
40
Yes
No
30
20
17.2%
17.4%
10
0
Spoke with Physician in
last week of life
Aware of
Doctor in Charge
Clear who Physician
in Charge
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It seems as soon as you go through the
nursing home doors you become someone
else’s patient so all of your past relationships
go away and you seem, you’re just cut-off
from all that and at the time when its so critical
to be able to rely on those relationships and
on the history that you formed with these
people. When you need it the most it’s gone.
29
4. Staffing & Staff Education
 Perception staff ‘doing the best they can’ with
limited resources;
 Comments by participants indicate a
perception that staff lacked educational
preparation in end-of-life care;
 Providing education and training not a
panacea.
30
... For days they were trying to give her, her
other pills…but they wanted to know [should
we stop], and they were trying to get her to
swallow them. After a couple of days they
asked us if they should be bringing her food,
and like we don’t know the process, I don’t
know when she needed that…you know it’s
just all those little things that I thought they
should have had, someone should have
been making that call…
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5. Psychosocial, Spiritual, &
Bereavement Support
 Feeling emotionally supported is a significant
part of family satisfaction;
 Few respondents reported receiving
information on how they might feel after the
death of the resident;
 Bereavement support highly variable;
 Follow-up contact highly valued by family
members.
32
Spiritual, Psychosocial & Bereavement Support
100
87.4%
90
80
75.0%
75.3%
Percentage of Respondents
70
60
Yes
No
50
40
30
24.7
25.0%
20
12.6%
10
0
Discussed Your
Religious Beliefs
Discussed how
Feel After Death
Respondent Wanted More Support33
Core Competency
 Do you regularly assess Spirituality? How
would you do this?
 Are there ways you could prepare family
members for the death of their loved one?
 What bereavement supports does your care
environment have? Could they be improved?
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6. Hospital Transfers & Location of
Death
 Rate of hospitalization in last month of life
variable (40% to 58%);
 Median length of time spent at other location
3 days (minimum 12 hours);
 Death outside the PCH occurred in 13.7% of
cases;
 Possible reasons include care not meeting
expectations and failure to achieve desired
location of death.
35
There’s one time when I look back on my
mom’s life, where she probably would have
died at that point had I not taken her into
the hospital and it would have been nice if
someone would have been there to coach
me or tell me things or explain things to me
because with what happened in the
hospital at this point I never would have
taken her…telling me that the things my
mother was going through was actually that
she was dying.
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7. Advance Care Planning
 The presence of a proxy decision maker and
the presence of an ACP significantly reduced
the likelihood of transfer in last month of life;
 Relationship between ACP and family
satisfaction tenuous;
 Presence of an ACP alone does not
guarantee satisfaction;
 Value of an ACP is for its social function and
process.
37
Advance Care Planning
100
87.3%
94.4%
90
77.0%
80
72.4%
70
Percentage of Respondents
60
Yes
No
50
40
27.6%
30
23.0%
20
12.7%
5.6%
10
0
Proxy decisionmaker identified
ACP in place
Discussed ACP
with physician
PCH respected ACP
38
Consequences of Dissatisfaction
 Strong sense of regret, anger, frustration,
sadness, unmet needs, and that they had let
the resident down.
 Feeling that they “needed to be there all the
time to ensure that things got done”.
 Wanting to distance themselves from the
facility.
39
I had this sense, of not failure, but I didn’t deliver
what I promised her because we had this
conversation [about being pain free], and I promised
her and there’s the huge sense that I let her down
and I hate that; I think I’ll always feel regret for what
happened in that week.
40
Recommendations
1. Develop programs and policies in end-of-life
2.
3.
4.
5.
care;
Develop indicators of end-of-life care
success;
Embrace a philosophy of palliative care in
facilities;
Provide clarity around the language used in
ACP;
Improve physician continuity;
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Recommendations
6. Improve resources available for end-of-life
care;
7. Provide bereavement follow-up and offer
counseling after decision-making;
8. Provide an exit interview for all family
members;
9. Increase the use of volunteers;
10. Explore ways to avoid hospital transfers.
42
I think most people [who] go there [PCH],
eventually pass away…I’m amazed that the
death word is not part of their business. Funeral
homes don’t mind talking about death. There
are acknowledged segments of society who are
in the business of giving people the best service
as part of this process, why can’t that be
something they’re equally proud of as their hot
meals.
43
Concluding Thoughts
 Might need to reconceptualize dying from a
defined event to an ongoing, evolving
process;
 Many of the factors which influence family
satisfaction are modifiable;
 Ensuring excellence at the end of life
important to family members.
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Contact:
genevieve.thompson@cancercare.mb.ca
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