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1164
JOURNAL OF PALLIATIVE MEDICINE
Volume 9, Number 5, 2006
© Mary Ann Liebert, Inc.
Preparing Caregivers for the Death of a Loved One:
A Theoretical Framework and Suggestions
for Future Research
RANDY S. HEBERT, M.D., M.P.H.,
1
HOLLY G. PRIGERSON, M.S., Ph.D.,
2
RICHARD SCHULZ, Ph.D.,
3
and ROBERT M. ARNOLD, M.D.
1
ABSTRACT
Caring for a terminally ill loved one and the death of that person are two of the most stress-
ful human experiences. Recent research suggests that a substantial number of caregivers are
unprepared for the death and that these caregivers may be at greater risk of psychological
distress. The literature on preparedness and mental health, however, is in its infancy. The
purpose of this paper, therefore, is to summarize the literature in order to stimulate discus-
sion and research on preparedness. It is our view that preparedness for the death of a loved
one is an important contributor to caregiver well-being and bereavement outcomes and that
more work in this area is needed in order to improve the care provided to caregivers of seri-
ously or terminally ill patients. We briefly review the literature on preparedness, present a
theoretical model delineating the relationships between preparedness, caregiver–health care
provider communication, and caregiver well-being, and provide suggestions for future re-
search.
INTRODUCTION
A
PPROXIMATELY
70% of the 2.4 million deaths
per year in the United States result from
chronic conditions such as cardiovascular dis-
ease, cancer, and chronic lung diseases.
1
Because
these disabling conditions often compromise the
ability of individuals to function independently,
deaths are typically preceded by a period of fam-
ily caregiving.
2
Family and friends provide per-
sonal care (e.g., dressing, feeding, housework),
medical care (e.g., administering medications,
changing dressings), and assist with medical de-
cision-making and the coordination of care.
3
Providing care is particularly demanding
when patients are terminally ill. The stress in-
volved can cause serious morbidity; as many as
50%–60% of caregivers of the terminally ill ex-
perience depressive symptoms.
4
The adverse
health effects can persist after the death. For ex-
ample, Zisook et al.
5
reported that 2 months af-
ter the loss, 20% of widows/widowers met cri-
teria for major depression and 15% met criteria
for depression 1 year after the death. Approxi-
mately 10% of widows/widowers suffer from
complicated grief, a syndrome cluster that pre-
dicts considerable morbidity over and above de-
pressive symptoms.
6
1
Division of General Internal Medicine, Section of Palliative Care and Medical Ethics,
3
Departments of Psychiatry,
Psychology and Sociology, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania.
2
Department of Psychiatry, Brigham and Women’s Hospital, Harvard Medical School; Center for Psychooncology
and Palliative Care Research, Dana-Farber Cancer Institute, Boston, Massachusetts.
The morbidity associated with terminal care-
giving and bereavement has generated interest in
the description and characterization of factors
that are associated with caregiver distress. Many
variables (e.g., gender, ethnicity, relationship to
the care recipient, social support, burden, etc.)
can affect mental health and well-being.
7,8
Recent
data indicate that whether or not a caregiver was
prepared for the death of their loved may also be
an important factor. Being unprepared for the
death is associated with greater depression, anx-
iety, and complicated grief.
9–12
Although preparing caregivers for the death of
their loved one is a key task for those health care
providers who provide care to dying patients,
this component of end-of-life care is often ne-
glected.
13,14
For example, a national probability
sample of 1578 decedents demonstrated that 23%
of informants reported that the death was “ex-
tremely” unexpected.
15
In one community-based
sample, 25% of bereaved caregivers thought that
health care providers should have done more to
prepare them.
14
This neglect reflects in part the
lack of a research base on preparedness that clin-
icians can use to help guide the care they provide
to caregivers.
Our goal, then, is to stimulate research on pre-
paredness in order to improve the care provided
to caregivers of seriously or terminally ill pa-
tients. We will briefly review the current litera-
ture on preparedness, present a theoretical model
delineating the relationships between prepared-
ness, caregiver–health care provider communica-
tion, and caregiver well-being, and provide sug-
gestions for future research.
PREPAREDNESS
Preparedness and clinical outcomes
It has long been suggested that family and
friends who are forewarned or prepared for the
death are better able to prepare psychologically.
16
Recent data have indeed confirmed that bereaved
caregivers who perceived themselves as unpre-
pared for the death are less satisfied and suffer
from worse mental health.
9–12
For example, in a
study of 112 spouses of deceased cancer patients,
those who were not prepared had more depres-
sive symptoms and more severe grief.
10
A study
of 122 caregivers demonstrated that lack of pre-
paredness for the death was associated with ma-
jor depressive disorder and complicated grief 9
months after the death.
11
A study of caregivers of
patients with dementia showed similar results.
The 23% who perceived themselves as unpre-
pared for the death had a twofold to threefold
higher likelihood of depression and complicated
grief than those who felt prepared.
12
In a study
by Valdimarsdottir et al.,
17
widows who were not
informed of their husbands’ impending deaths or
were not provided with support from health care
providers during the last month before the deaths
were at increased risk of anxiety and tranquilizer
use up to 5 years after the death. The relationship
between preparedness and psychiatric morbidity
was dose-dependent; the less prepared bereaved
persons felt, the higher the risk of psychiatric
complications.
Indirect evidence for the impact of prepared-
ness on clinical outcomes also comes from hos-
pice data. Bradley and colleagues
18
conducted a
prospective study of primary family caregivers of
terminally ill adult patients. They demonstrated
that caregivers of patients enrolled in hospice for
fewer than 4 days were almost threefold more
likely to suffer from depression 6 to 8 months af-
ter the death. Caregivers remained at elevated
risk 13 months after the death. After adjusting for
potential confounders, caregivers of patients en-
rolled in hospice for fewer than 4 days were al-
most nine times more likely to be depressed.
19
Christakis and Iwashyna
20
analyzed data from a
matched retrospective cohort study from a large
population-based sample of elderly couples. Sur-
viving spouses of people who had enrolled in
hospice had a lower mortality than those of dece-
dents who did not enroll.
20
Both groups of in-
vestigators hypothesized that their results might
be explained by the fact that hospice services,
such as counseling and spiritual care, prepare the
family for the patient’s impending death.
Definition of preparedness
The duration and intensity of terminal care
(e.g., spouses of hospice patients with lung can-
cer spend an average of more than 100 hours per
week providing care) may mislead health care
providers into believing that caregivers have am-
ple time to prepare for the death.
4
This is often
not the case. Preparedness, or the degree to which
a caregiver is ready for the death, is not depen-
dent on the duration or intensity of care. Rather,
it is a caregiver’s perception of his/her readiness
PREPARING CAREGIVERS FOR THE DEATH OF A LOVED ONE
1165
for the death.
11
It is important to note, however,
that although preparing caregivers for the death
of their loved one is an integral component of
good end-of-life care, preparedness has never
been fully defined or conceptualized.
21
This lack
of precision or consensus about the term pre-
paredness has important research and clinical im-
plications—precise descriptions and definitions
are central to the ability of investigators to study
preparedness and of clinicians to intervene on be-
half of caregivers. In addition, although there ex-
ists an important body of literature on topics
related to preparedness (e.g., prognostication,
death acceptance, anticipatory grief, etc.), pre-
paredness is not synonymous with these con-
structs.
22,23
For example, being told a loved one’s
prognosis, although an important component of
preparedness, may not be sufficient for caregivers
to be cognitively and emotionally prepared for
the death. Similarly, accepting that death is in-
evitable does not mean that one is prepared.
Two areas of research provide additional insight
on preparedness. The first pertains to the concept
of uncertainty in illness. Uncertainty, or the “in-
ability to determine the meaning of illness-related
events” exists when a situation is unpredictable,
when information is inadequate, and when peo-
ple feel insecure in their understanding.
24
These
are the same conditions that contribute to care-
givers being unprepared for the death.
25
Although
some work demonstrates that uncertainty is some-
times desirable (e.g., when uncertainty is viewed
as a challenge or an opportunity for growth), the
majority of work on uncertainty in illness has
shown that uncertain situations are a threat to
well-being.
26
The most frequent finding is the pos-
itive relationship between uncertainty and emo-
tional distress, anxiety, and depression across a va-
riety of clinical populations.
27–29
The few studies
that have been conducted among caregivers have
shown similar relationships. For example, among
spouses of patients with multiple sclerosis, uncer-
tainty was among the strongest predictors of care-
givers’ health impairment.
30
Uncertainty has also
been negatively associated with health in spousal
caregivers of patients with advanced cancer and
in caregivers of patients with Parkinson’s dis-
ease.
31,32
Multidimensional nature of preparedness
Although informative, work on uncertainty in
illness does not fully elucidate the nature of pre-
paredness. In particular, the bulk of work on un-
certainty in medical settings has focused on med-
ical uncertainty (i.e., issues surrounding diagno-
sis, prognosis, symptoms, treatment, and disease
progression) in acutely ill patients.
33,34
While
these issues are certainly pertinent to caregivers,
preparedness is a multidimensional construct
that may also center on nonmedical concerns
such as the availability of financial resources,
changes in future life plans, and existential issues.
Steinhauser and colleagues
35
studied these is-
sues by conducting focus groups and a national
survey of patients, families, and health care
providers in order to determine what factors are
important at end of life. They demonstrated that
preparedness, or the degree to which the care-
giver was ready for the death, was multidimen-
sional, with medical, psychosocial, spiritual, and
practical dimensions. For example, preparedness
involves (1) knowing what signs and symptoms
to expect during the terminal phase (medical), (2)
discussing grief and emotions and maintaining
relationships with friends and family (psychoso-
cial), (3) prayer and talking about the meaning of
the death (spiritual), and (4) planning funeral
arrangements (practical). A major implication of
these findings is that preparedness likely means
different things to different caregivers. For ex-
ample, for some, being prepared for the death
may mean having advance directives in place, es-
tate planning completed, etc. For others, it may
mean turning to God in a search for meaning.
36
Determinants of preparedness
Given its multidimensional nature, several fac-
tors may affect how prepared caregivers are for
the death. Among these are cultural beliefs and
practices. For example, explanatory mechanisms
about illness, religious beliefs and practices, and
beliefs about death and dying may all impact pre-
paredness.
37
Few studies, however, have specifi-
cally looked at potential predictors of prepared-
ness. Hebert and colleagues
12
demonstrated that
five variables—ethnicity, education, income,
whether or not the patient was in pain or physi-
cal discomfort before the death, and prebereave-
ment depression—were related to preparedness.
As had been shown by others, the duration of
caregiving was not associated with prepared-
ness.
12
Blacks, caregivers with less education,
those with less income, and those with more de-
pressive symptoms were more likely to perceive
HEBERT ET AL.
1166
themselves as “not at all” prepared for the death.
The authors speculated that these results might
be a result of less access to good palliative care.
Ethnic minorities and individuals of lower so-
cioeconomic status are more likely to experience
health disparities at end-of-life.
38,39
In contrast,
the amount of pain the care recipient was in prior
to death was positively associated with pre-
paredness. Because family caregivers often view
pain as an inevitable part of the dying process, it
is possible that those caregivers who are provid-
ing care to a loved one who is in pain are better
able to mentally prepare for the death.
40
THEORETICAL MODEL
We have reason to believe that another factor
deserves further study. Specifically, we believe
that communication between caregivers and
health care providers is a major predictor of pre-
paredness. This assertion is based on a body of
data demonstrating that (1) quality communica-
tion with health care providers is associated with
improved psychological adjustment; (2) care-
givers have identified communication about
death with the health care providers caring for
their loved one as one of the most important and
neglected aspects of end-of-life care; and (3) good
communication about death and dying with
health care providers is necessary for caregivers
to prepare for the death.
41–44
Although the vast
majority of communication studies refer to pa-
tients, there is evidence that similar relationships
between communication and clinical outcomes
can be expected with caregivers. For example,
studies show that when caregivers of seriously ill
patients voice questions and perceive that their
questions have been answered, satisfaction and
quality of life are improved and there are fewer
depressive symptoms.
45,46
We hypothesize that better communication
about death and bereavement between caregivers
and health care providers will improve care-
givers’ preparedness, and as a result, their clini-
cal outcomes (Fig. 1). Two aspects of the model
are important to note. First, although discussions
about preparedness can be a primary focus of
discussion (solid arrow), the multidimensional
nature of preparedness (i.e., preparedness has
medical, psychosocial, spiritual, and practical di-
mensions) indicates that discussions can also be
PREPARING CAREGIVERS FOR THE DEATH OF A LOVED ONE
1167
FIG. 1. Theoretical framework linking health care provider–caregiver communication, caregiver preparedness for
the death of their loved one, and clinical outcomes.
embedded into (broken arrows) conversations
about other end-of-life topics (i.e., discussions
about prognosis, advance care planning, etc.).
47
Second, discussions of preparedness should not
be static. Rather, they should be responsive to the
individualized needs of caregivers and occur in
stages so families can assimilate the informa-
tion.
48
Communication and preparedness
A frequent source of frustration for families is
that health care providers never discussed the
fact that their loved one was dying. Common
complaints are that conversations do not occur or
are couched with ambiguous language (e.g., “the
patient may not get better”).
44
This deficit in com-
munication is in large part responsible for care-
givers being unprepared for the death and left
with unanswered questions about death and dy-
ing, interpersonal and spiritual concerns, and
what to expect in the future.
14,49,50
In contrast,
family-centered palliative care, which includes
open and frequent communication between the
patient, family, and health care providers, allows
families to more fully prepare for the death.
51
A study by Valdimarsdottir et al.
17
of widows
whose husbands died of prostate cancer provides
some insight into the relationship between com-
munication and preparedness. Widows who re-
ported an awareness time (the duration of time
when the widow realized that her husband’s dis-
ease was fatal to the time of death) of less than
24 hours reported the most anxiety. The investi-
gators performed an exploratory analysis of po-
tential predictors of short awareness time. They
found that the duration of illness and the level of
patient disability were not related to awareness
time. Rather, communication about death, dying,
and bereavement, and the provision of psy-
chosocial support by the physicians caring for the
patients had the strongest association with
awareness time.
SUGGESTIONS FOR FUTURE RESEARCH
There are several potentially fruitful avenues
of research into the role of preparedness at end-
of-life. The first step is to properly conceptualize
and measure preparedness. In the studies to date,
caregivers were typically asked some variation of
the question, “How prepared were you for the
death?” This type of question is subject to inter-
pretation; caregivers who perceive themselves as
“unprepared” may be referring to issues such as
lack of information, cognitive awareness, emo-
tional adjustment, spirituality or other plans for
adjusting to the impending death. Development
of a reliable, valid, and multidimensional mea-
sure of preparedness is necessary before clinical
interventions targeting preparedness can be
properly developed and tested.
Second, a large body of conceptual and empir-
ical work has evolved in recent years to provide
clinicians with guidance on how to best commu-
nicate with patients and families.
47,52,53
What is
missing from this literature, however, is empiri-
cal guidance on how clinicians can communicate
with caregivers to prepare them for the death of
their loved one. Although existing communica-
tion-based interventions and training programs
can be effective in changing health care
providers’ attitudes, skills, and beliefs, and in im-
proving recognition of patients’ psychosocial
concerns, future interventions will need to be tai-
lored to the specific information needs of care-
givers.
35,54,55
Preparedness-focused interventions
will also need to account for the fact that care-
givers’ willingness to discuss death and dying of-
ten varies during the course of the illness.
56
In ad-
dition, providing information will not be enough.
Good communication is dependent on more than
simple information exchange. Consideration has
to be given to timing, location, format, and the
language used. The process of communication
(i.e., how information is delivered, the attitudes
of health care providers, etc.) is as important as
the content and is critical to how the information
is perceived.
48
One additional promising aspect of these in-
terventions is their potential impact on care-
givers’ mental health, not only during terminal
caregiving, but also after the death of the patient.
Intervening with caregivers prior to the death
rather than after is likely to be more beneficial
for bereavement mental health, and potentially,
could offset the mortality risks associated with
caring for a terminally ill loved one.
57,58
For ex-
ample, a study of 73 adult family caregivers
showed that support provided prior to the pa-
tient’s death accounted for 29% of the variance in
bereavement distress while support after the
death accounted for only 2%.
59
Currently, most
bereavement interventions target caregivers
months after the death.
60
HEBERT ET AL.
1168
Third, the multidimensional nature of pre-
paredness has several implications. Current work
on preparedness has focused on the relationship
between preparedness and mental health, pri-
marily depression and grief. While these are im-
portant outcomes, better preparing caregivers for
the death may also affect spiritual well-being.
Spiritual well-being is itself an important deter-
minant of quality of life for caregivers.
61
It would
also be important to determine the relationship
between preparedness and surrogate decision-
making. Research suggests that many caregivers
are unprepared for the death of their loved one
and as a result, are uncomfortable in setting goals
for their loved one’s end-of-life care.
62
Finally,
end-of-life care often involves interactions be-
tween caregivers and various professionals (e.g.,
physicians, nurses, social workers, mental health
professionals, clergy, etc.). These professionals
have distinct roles in preparing caregivers for the
death. More research should be conducted to de-
termine the impact of these different profession-
als on preparing caregivers for the death.
Fourth, existing research has been limited to
bereaved caregivers (i.e., the bereaved were
asked how prepared they were for the death). Al-
though bereaved individuals can be accurate
when recalling their level of grief, the retrospec-
tive nature of this design may introduce bias such
that persons suffering from greater mental health
morbidity may be more likely to perceive them-
selves as having been unprepared for the death.
63
Future studies should assess preparedness prior
to the death, using a valid instrument, in order to
determine how preparedness impacts morbidity.
SUMMARY
Florence Nightingale best summarized how be-
ing unprepared for the death can affect care-
givers:
Apprehension, uncertainty, waiting, expec-
tation, fear of surprise, do a patient more
harm than exertion. Remember, he is face to
face with the enemy all the time, internally
wrestling with him, having long imaginary
conversations with him.
Family caregivers are integral to the care of se-
riously ill patients. More research on prepared-
ness is needed in order to give clinicians the guid-
ance necessary to provide caregivers with the in-
formation and support they need when caring for
a seriously ill loved one.
ACKNOWLEDGMENTS
Preparation of this manuscript was supported
by grants from the Alzheimer’s Association and
the National Institutes of Mental Health (1K23
MH074963-01).
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Address reprint requests to:
Randy Hebert, M.D., M.P.H.
Division of General Medicine
Section of Palliative Care and Medical Ethics
MUH 933W
200 Lothrop Street
Pittsburgh, PA 15213
E-mail: hebertrs@upmc.edu
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