Isabel Torres-Vigil, DrPH1,2,
Marlene Z. Cohen, PhD, RN, FAAN3,
Allison de la Rosa, MPH2,
Eduardo Bruera, M.D.2
The association between past grief
reactions and bereaved caregivers’
perceptions of parenteral hydration during
the last weeks of life
1. The University of Houston, Graduate College of Social
Work, Houston, TX, USA
2. The University of Texas MD Anderson Cancer Center,
Houston, TX, USA
3. University of Nebraska Medical Center, College of
Nursing, Omaha, NE, USA
Eduardo Bruera, M.D.
MD Anderson Department of Palliative Care
and Rehabilitation Medicine
Background

Parenteral Hydration (PH) for advanced cancer
patients is a controversial therapy in hospice care in
the U.S.
 Limited research on how PH is viewed by hospice
patients and their caregivers.
Participants

Supplemental survey to our double-blind controlled trial
examining the efficacy of SQ PH as compared to placebo
in hospice cancer patients that included both patients and
caregivers.

Bereaved family caregivers who completed their
participation in the clinical trial and had lost their loved
one within 3-23 months.
 First study to our knowledge to investigate the
association between grief and family caregiver PH
perceptions.
Measures
Study Aim and Design


To identify the demographic, clinical and servicerelated factors associated with bereaved caregivers’
perceptions regarding the overall benefits their loved
ones’ derived from PH during their last weeks of life.

Cross-sectional descriptive and analytic survey.

Caregivers interviewed 3-23 months after loved one’s
death to identify their attitudes/beliefs regarding PH
(40-60 minute interview; 1 year anniversary avoided).
Outcome variable  Attitudes and Beliefs regarding PH
 16 ad-hoc questions on caregiver attitudes and beliefs
following their experience with PH
 Overall, I believe that hydration was beneficial for my loved
one (5 point scale from Strongly Agree to Strongly Disagree)
 Main Independent variable  Grief Levels
 Past and Present grief levels and grief reaction group measured by
the Texas Revised Inventory of Grief (TRIG)
 Highly validated, reliable two-part, 21 item Likert-type measure of
grief following bereavement.
1
Other potential predictors/covariates of
PH perceptions
TRIG Scoring

Past Behavior scale = 8 questions and the Present
Feelings scale contains 13 questions.

Each item has 5 response categories, ranked from 1
(“completely true”) to 5 (“completely false”).



Satisfaction with hospice service: (FEHC):  “Overall, how
would you rate the care the patient received while under the
care of hospice?” (Poor - Excellent).
Summed items for a total score for each scale.
Higher score = less grief and lower score = more grief.

Length of hospice service
Scores used to classify each scale as low grief (< the 50th
percentile) or high grief (> 50th percentile).

Clinical trial group assignment and length of participation

Clinical (type of cancer)

Demographics (age, ethnicity, education)

Caregiver relationship to patient
4 Grief Reaction Groups:
1.
2.
3.
4.
Absence of grief (Low grief on both scales)
Delayed grief (Low grief on Past and High grief on Present)
Prolonged grief (High grief on both scales)
Acute grief (High grief on Past and Low grief on Present)
Analysis

Sample Description (n = 76, a 78% Response Rate)
Bivariate analyses using Chi-square tests,
Correlations and ANOVA’s to examine
associations between PH attitudes/beliefs and
levels of past/present grief levels and grief
reaction group.
Variables
LAC (n = 76)
Gender
Female
Males
79
21
Age
≥ 45
< 45
79
21

Bivariate analyses conducted to examine the
associations between PH attitudes/beliefs and
other independent variables.
Education
High School or less
1-3 years College
College Graduate
Post-Grad
26
38
22
13

Linear regression analysis.
Ethnicity
Anglo
African American
Latino
Other
54
30
15
1
Sample Description (n = 76, a 78% Response Rate)
Variables
LAC (n = 76)
Group Assignment
Full amount
Reduced Amount
58
42
Days on Clinical Trial
0-3
4-7
8-14
> 14
21
26
42
11
Cancer Type
GI
Lung
Urological
Ovarian
Breast
Head and Neck
Other
37
19
16
8
7
7
7
Sample Description (n = 76, a 78% Response Rate)
Variables
LAC (n = 76)
Relationship to Patient
Spouse
Son/Daughter
Sibling
Parent
Other
49
28
8
5
5
Days/Months in Hospice
< 30 days
1-3
4-6
>6
23
59
12
6
Caregiver rating of hospice care quality
Excellent
Very Good
Good
Fair
Poor
62
22
7
7
2
2
Attitudes and Beliefs (16 items)
Attitudes and Beliefs
1 = Strongly Agree; 2 = Agree; 3 = Not Sure; 4 = Disagree; 5 = Strongly Disagree
1 = Strongly Agree; 2 = Agree; 3 = Not Sure; 4 = Disagree; 5 = Strongly Disagree
Please tell me how much you agree or
disagree with each of the following
statements.
Strongly
Agree
(1)
Agree
(2)
Not sure
(3)
Disagree
(4)
Strongly
Disagree
(5)
1. I think that hydration is more like food.
[µ= 2.92]
17
26
20
21
16
2. I think that hydration is more like
medicine. [µ= 3.17]
8
24
29
22
17
27
32
16
21
4
4. The subcutaneous route (under the
skin) of hydration is just as effective as
the intravenous route. [µ= 2.57]
19
27
37
13
5. The subcutaneous route (under the
skin) of hydration is less bothersome than
the intravenous route. [µ= 2.28]
25
35
29
6. I would prefer the subcutaneous route
(under the skin) over the intravenous
route. [µ= 2.44]
23
37
23
3. Hydration is also nutrition. [µ= 2.42]
Strongly
Agree
(1)
Agree
(2)
Not sure
(3)
Disagree
(4)
Strongly
Disagree
(5)
40
44
12
1
3
8. In my opinion hydration was useful.
[µ= 1.91]
45
31
17
3
4
4
9. I think that hydration was bothersome
for my loved one. [µ= 3.93]
4
17
8
22
49
8
3
10. Hydration improved the way my loved
one felt. [µ= 2.07]
39
31
19
6
5
8
9
11. Hydration improved the way my loved
one looked. [µ= 2.39]
26
35
22
9
8
1 = Strongly Agree; 2 = Agree; 3 = Not Sure; 4 = Disagree; 5 = Strongly Disagree
Agree
(2)
Not sure
(3)
Disagree
(4)
Strongly
Disagree
(5)
12. Hydration was psychologically useful
for my loved one. [µ= 2.20]
31
35
19
12
3
13. Hydration was psychologically useful
for my family and me. [µ= 1.99]
35
46
7
9
3
14. The process of hydration made me
feel better. [µ= 1.81]
45
39
9
4
3
43
43
3
6
5
51
24
14
7
4
16. Overall, I believe that hydration was
beneficial for my loved one. [µ= 1.88]
(Main Outcome Variable)
Variables
2.
3.
4.
76% percent agreed/strongly agreed that PH had been
beneficial for their loved one.

Caregivers with absence of past grief (88%) more likely to
agree/strongly agree that PH was beneficial compared to
those with a presence of past grief (61%) (P = 0.007).

Increased satisfaction with hospice care associated with
more favorable perceptions of PH (P = 0.004).

Present grief levels, grief reaction group, or other
demographic and clinical variables not associated with PH.

Association between past grief and PH ratings persisted
after controlling for satisfaction with care ratings (P = 0.002)
41
13
37
9
Past Grief
Low
High
54
46
Present Grief
Low
High
50
50
Conclusions
Summary of Main Results

LAC (n = 76)
Absence of grief (Low grief on both scales)
Delayed grief (Low on Past and High on Present)
Prolonged grief (High grief on both scales)
Acute grief (High on Past and Low on Present)
1.
Strongly
Agree
(1)
15. Hydration was an acceptable burden
for my loved one given the possible
advantages. [µ= 1.86]
7. The subcutaneous route (under the
skin) of hydration is less complex at
home than the intravenous route.
[µ= 1.83]
Grief Levels and Grief Reaction Groups
Attitudes and Beliefs
Please check the box that best
describes whether each of the
following statements is true or
false to you:
Please check the box that best
describes whether each of the
following statements is true or
false to you:

Caregiver perceptions regarding PH during last
weeks of life strongly linked to their initial adjustment
to death.

Need more prospective research to investigate the
direction of this association to understand the role
that EOL PH may play in the bereavement process.

Association between PH perceptions and satisfaction
with hospice care may mean that clinical research in
hospice populations may improve satisfaction with
care due to added care from clinical research staff.
3
Caregiver Voices +



“On days 4-5 she got up and cooked for us. Even her color got better… She
was cooking! Because that’s what she did for us her whole life. It didn’t last
long, but it was great to see her in there and doing what she loved doing and
that was cooking for us! She was cooking for us and showing us her recipes
and showing us one last time. There are two recipes… “Mom, how do you do
this one more time?” It gave us one more good time with her. When she was
dying we had a hard time accepting this and the hydration finally helped us
accept her death.”
"Just that thought it kept her more lucid up until almost the last day- and
without it she would not have been as lucid because she wasn't able to eat or
drink a lot on her own. She was emaciated, almost a skeleton. And I wish
others would have the same opportunity to get this procedure…They stopped
it a few days before her death because the fluid was collecting in her body
and her kidneys weren't processing. But she was lucid until the day she died
and I attribute this to the hydration. It really helped the quality of her life. I
think she got the reduced amount, but even like that, I still think it helped."
"If she had not had the fluids given to her- My daughter did real good- she
died a peaceful death. She stopped eating and then when they started the
hydration she started trying to eat again. "She still had life in her with the
fluids. She sure did." The fluids helped my daughter in so many ways- I
didn't think she would have looked as good and seemed as strong as she
was without it. She communicated with me up until the last day. It's very
helpful to have this study. I know it was to me, in my family and loved ones!"
Caregiver Voices +

"Only on it 3 days because they said he could drown on his
own fluids- because he could get too much fluids. Hospice
explained it to us and they said they had to discontinue it. It
definitely improved things- he didn't start talking again but he
got closer to talking- it helped with his energy. He had it for 4
hours that was his rest time- he definitely seemed more
comfortable. On Monday he had a bowel movement, the day
before he passed away. I was surprised he died the next day
but he seemed to feel better after the bowel movement which
was because of the fluids. I think he got the full amount of
water.“

"On those 4 days there was a decrease in her request for pain
meds. I remember that distinctly and the hospice nurses
confirmed that she felt better. I wish she would have been on it
longer so it could help more.“

"We strongly feel that hydration helped by providing enough
fluid so he could benefit from the pain medication."
Caregiver Voices 



"Once you are terminal, we felt the hydration would make her feel worse. The
question I would raise is that hydration sustains the body to a point that it
should not be prolonged- given all the pain and anguish. There is a period of
time I feel hydration is particularly useful- but there comes a point in the disease
progression to where maybe we are prolonging the inevitable? But knowing that
we were getting her some hydration and a bit of nutrients- whether it was
placebo or the real stuff- it helped us psychologically! Towards the end- that’s
when the questions come up and it's a case by case basis."
"Mentally it seemed to help him but after a few days of it the hydration made
him more uncomfortable (in pain) he would say that it made his skin hurt at the
area where it was put in and his skin would stay bubbled up for 48 hrs. The
bubble would just go down when they would give him more. He kept asking the
nurse to put it in his veins because under the skin it hurt so bad."
"My 3 adult children, my mother and I all believe the hydration prolonged my
wife's life. However, we also believe the hydration process forced us to make a
decision with my wife as to when to end the process. And when it was all over
both my wife and her loved ones all were subjected to excessive emotional
stress. I would never recommend hydration to anyone under hospice care."
"Well he only had it for a day and half because it was extremely painful. They
tried it in the abdomen and under collarbone- but it was very painful. He asked
to be disconnected because it was so painful. I could see how it would be
beneficial to get hydrated but he just couldn't get past the pain."
4