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.

6

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.

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

14

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

16

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

17

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.

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.

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.

Staff Appreciative of Opportunity to

Talk about Patient Death

20

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