2014 Jewish Home Lifecare Palliative Care Conference: It's Not the Place, It's the Practice

1. Direct Care Workers’ Experiences with
Patient Death: Training and Support Needs
Kathrin Boerner
Jewish Home Lifecare/Icahn School of Medicine at Mount Sinai
The research presented herein was supported by a grant from the National
Institute on Aging (1 R03 AG034076), as well as by several private donors.

2. Background
• Bereavement typically considered in context of family
• Research focused on bereavement in informal caregivers
• Little is known about formal caregivers’ response to death
of person they have cared for
• Increasing number of elders have to rely on formal care
• Front-line staff providing bulk of direct care are CNAs in
nursing homes and homecare workers in community
• Staff often develop family-like ties, but grief of staff is
under-acknowledged or “disenfranchised” (Moss et al., 2003)
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3. Study Objectives
• To examine grief symptoms in direct care workers after
the death of a patient in their care
• To investigate the relationship between grief and
employment-related outcomes
• To identify training and support needs related to patient
death and dying
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4. Study Sample
CNAs (N =140)
HHAs (N = 80)
M = 50.5 (SD 8.9)
M = 43.2 (SD 12.5)
Gender (female)
89%
96%
Race/ethnicity**
84% Black;
11% Hispanic
67% Black;
29% Hispanic
HS/GED
48%
36%
Some college
30%
31%
College graduate
8%
11%
85%
81%
Age***
Education
Religiosity
Faith very important
Group differences CNAs vs. HHAs: *p < .05, **p < .01, ***p < .001.
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5. Study Sample (cont.)
CNAs (N =140)
Manhattan
Site/agency
51
Bronx
Jewish
Home Lifecare
62
Westchester
Shift
HHAs (N = 80)
27
38
42
Other
62 day, 58 eve, 20 night
--
Years on job***
M = 15.2 (SD = 7.4)
M = 6.5 (SD = 6.6)
Months with
patient***
M = 38.9 (SD = 36.9)
M = 18 (SD = 29.0)
Months since
death**
M = 1.5 (SD = 1.1)
M = 1.1 (SD = 1.0)
Group differences CNAs vs. HHAs: *p < .05, **p < .01, ***p < .001.
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6. Grief Symptoms Less Common in Staff
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Cry when think of Still feel need to cry
person
CNAs
6
HHAs
Can't avoid
thinking
No one can ever
take place
Family Caregivers

7. Grief Symptoms Equally Endorsed
100%
80%
60%
40%
20%
0%
Very much miss
person
CNAs
7
Things/people
remind me
HHAs
Painful to recall
memories
Hide my tears
Family Caregivers

8. Acceptance of Death More Difficult for CNAs?
30%
25%
20%
15%
10%
5%
0%
Cannot accept death Unfair person died
CNAs
8
HHAs
Unable to accept
Family Caregivers

9. Summary - Grief Experience
• Experiences of CNAs and HHAs reflected many core grief
symptoms and expressions typically reported by family caregivers.
• Only 4 of 13 grief symptoms showed clear contrasting pattern of
being reported by minority of staff vs. majority of family caregivers.
• Groups were very similar on core items such as very much missing
the person and that it’s painful to recall memories.
• Surprising percentage of staff endorsed item considered key
indicator of very close relationships (No one can ever take place).
• Striking percentage seemed to struggle with acceptance of death.
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10. “Not at All” Prepared for Death of Patient
50%
40%
30%
20%
10%
0%
Unprepared emotional
Unprepared informational
CNAs
10
HHAs
Unprepared - both

11. Lack of Training or Preparation for Patient Death
80%
70%
60%
50%
40%
30%
20%
10%
0%
No training from
employer
No training elsewhere
CNAs
11
HHAs
No training at all

12. Types of Training or Preparation
Learned about Patient Death/Dying
CNAs
HHAs
%
Intro training/orientation
5
10
Inservice
27
26
Written information from employer**
0
8
Support/focus groupsᵻ
3
0
Informal on-site instruction
4
10
Instruction not to get close*
4
13
Personal experience
7
13
Previous work experience
6
4
Certification/school
12
9
Group differences CNAs vs. HHAs: ᵻ p < .10, *p < .05, **p < .01.
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13. Need for More Training and Preparation!
We have a lot of residents just coming in for comfort care.
You’re looking at death every week. It’s like a hospice
atmosphere. If you’re gonna do hospice, we should be
trained for that. I don’t think it’s fair to bring a resident in
when you’re not trained to deal with that.
CNA
The in-service on death and dying, it was more about what to
expect in terms of symptoms. Not for us really - not support.
HHA
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14. Support in Context of Patient Death
CNAs
HHAs
N (%)
Support before death:
From supervisor
Helpful
From coworker ***
Helpful
22 (16)
10 (12)
19 (86)
9 (90)
75 (54)
8 (10)
73 (97)
7 (88)
13 (9)
15 (19)
12 (92)
14 (93)
84 (60)
12 (15)
78 (93)
9 (75)
Support after death:
From supervisor *
Helpful
From coworker ***
Helpful *
Group differences CNAs vs. HHAs: *p < .05, ***p < .001.
Support (yes); Helpful (somewhat/very).
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15. Desired Support in Context of Patient Death
50%
45%
40%
35%
30%
25%
CNAs
HHAs
20%
15%
10%
5%
0%
Memorial
Ensure better Opportunity to Better training
ritual at work
EOL care
talk
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16. Emotional Preparedness and Closeness of
Relationship with Patient Predict Grief
b
Staff factors
Emotional preparedness
R2 change
.08*
–.21*
Institutional factors
.01
ns
Patient/relational factors
Months with patient
Relationship with patient
Total R2
.06**
.21**
.19**
.15**
Variables accounted for but not significant: Age, Education, Time since death,
Other patient deaths, Informational preparedness, Care setting, Support
availability supervisor/coworkers, Patient suffering, Caregiving benefits.
*p < .05, **p < .01, ***p < .001.
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17. More Intense Grief Related to More
Negative Employment Outcomes
Depersonalization
Emotional Sick days after
exhaustion patient death
Grief
symptoms
.17*
.08
.17**
Grief
avoidance
.26**
.13ᵻ
.06
N = 220. ᵻ p < .10, *p < .05, **p < .01.
Would you say that taking sick time was related? Yes.
How would you say it was related? I was all day in bed thinking
about him. I was so down, I couldn’t go to work. I just called and
said I don’t feel well.
CNA
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18. Key Points
• “Caring about those one cares for” desirable in long-term care, but
flip-side is grief after patient death, which comes with potential costs
for employment outcomes.
• To date, direct care staff receive little training, preparation, and
support to help them deal with patient death/dying.
• However, these are important venues to improve the work
experience and employment outcomes of front-line staff.
• Solution is not to prevent grief but to find ways to increase staff
acceptance/preparedness for death, strengthen staff handling of
patient death, to mitigate grief or prevent need for avoidance.
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19. Apply Study Findings
• Use study findings to generate training material, which can be
integrated into existing training programs and curricula, as well
as can be used to design new programs.
• Work towards more integrated involvement of front-line staff in
care process, allowing them to be more prepared and better
positioned to provide high quality care.
• Draw on study findings for concrete suggestions in terms of
supports and acknowledgements desired by front-line staff.
Context-specific plans: Next steps for training,
support, and ritual-building need to consider particular
circumstances and dynamics of each care setting.
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20. Staff Appreciative of Opportunity to
Talk about Patient Death
This [study] is a good thing. Like now: it makes me feel like I’m kind of
getting real closure with [resident]. I got to say what I wanted to say.
Even if I’m not getting answers back, I’m letting out all I had here. If we
had this a long time ago, maybe new CNAs would act different with it.
CNA
For me, I’m grateful you did come. I wanted to tell someone [about
client]. You did inquire about her, and I was able to tell you. That’s the
part I’m gonna hold.
HHA
This interview makes me happy. It makes me happy that [JHL] wants to
know what is my emotional state, how the employee felt or how it
affected him/her. Truth is I did not do it for the money. This interview
has a value and I feel happy that [JHL] is concerned about me.
HHA
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