kathrin boerner-direct care worker's experiences with patient death: training and support
DESCRIPTION
2014 Jewish Home Lifecare Palliative Care Conference: It's Not the Place, It's the PracticeTRANSCRIPT
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.
Background
2
• 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)
Study Objectives
3
• 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
4
Study Sample
CNAs (N =140) HHAs (N = 80)
Age*** 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
Education
HS/GED 48% 36%
Some college 30% 31%
College graduate 8% 11%
Religiosity
Faith very important 85% 81%
Group differences CNAs vs. HHAs: *p < .05, **p < .01, ***p < .001.
5
Study Sample (cont.)
CNAs (N =140) HHAs (N = 80)
Site/agency
Manhattan 51 Jewish
Home Lifecare
38
Bronx 62
Other 42
Westchester 27
Shift 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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Grief Symptoms Less Common in Staff
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
Cry when think of person
Still feel need to cry Can't avoid thinking
No one can ever take place
CNAs HHAs Family Caregivers
7
Grief Symptoms Equally Endorsed
0%
20%
40%
60%
80%
100%
Very much miss person
Things/people remind me
Painful to recall memories
Hide my tears
CNAs HHAs Family Caregivers
8
Acceptance of Death More Difficult for CNAs?
0%
5%
10%
15%
20%
25%
30%
Cannot accept death Unfair person died Unable to accept
CNAs HHAs 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.
10
“Not at All” Prepared for Death of Patient
0%
10%
20%
30%
40%
50%
Unprepared - emotional
Unprepared - informational
Unprepared - both
CNAs HHAs
11
Lack of Training or Preparation for Patient Death
0%
10%
20%
30%
40%
50%
60%
70%
80%
No training from employer
No training elsewhere No training at all
CNAs HHAs
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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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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Support in Context of Patient Death
CNAs HHAs
N (%)
Support before death:
From supervisor 22 (16) 10 (12)
Helpful 19 (86) 9 (90)
From coworker *** 75 (54) 8 (10)
Helpful 73 (97) 7 (88)
Support after death:
From supervisor * 13 (9) 15 (19)
Helpful 12 (92) 14 (93)
From coworker *** 84 (60) 12 (15)
Helpful * 78 (93) 9 (75) Group differences CNAs vs. HHAs: *p < .05, ***p < .001.
Support (yes); Helpful (somewhat/very).
15
0%
5%
10%
15%
20%
25%
30%
35%
40%
45%
50%
Memorial ritual at work
Ensure better EOL care
Opportunity to talk
Better training
CNAs
HHAs
Desired Support in Context of Patient Death
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b R2 change
Staff factors .08*
Emotional preparedness –.21*
Institutional factors .01
ns
Patient/relational factors .06**
Months with patient
Relationship with patient
.21**
.19**
Total R2 .15**
Emotional Preparedness and Closeness of
Relationship with Patient Predict Grief
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.
More Intense Grief Related to More
Negative Employment Outcomes
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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
Depersonalization Emotional
exhaustion
Sick days after
patient death
Grief
symptoms .17* .08 .17**
Grief
avoidance .26** .13ᵻ .06
N = 220. ᵻ p < .10, *p < .05, **p < .01.
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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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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.
Staff Appreciative of Opportunity to
Talk about Patient Death
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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