876 Journal of Pain and Symptom Management Vol. 47 No.

5 May 2014

Original Article

Perspectives of Family Members on Planning

End-of-Life Care for Terminally Ill and Frail
Older People
Ineke J. van Eechoud, MSc, Ruth D. Piers, PhD, MD, Sigrid Van Camp, MSc,
Mieke Grypdonck, PhD, MSc, RN, Nele J. Van Den Noortgate, PhD, MD,
Myriam Deveugele, PhD, MSc, Natacha C. Verbeke, MD,
and Sofie Verhaeghe, PhD, MSc, RN
Nursing Science (I.J.v.E., M.G., S.V.), Department of Public Health, Faculty of Medicine and Health
Sciences, Ghent University, Ghent, Belgium; Department of General Practice and Primary Health Care
(M.D.), Faculty of Medicine and Health Sciences, Ghent University, Ghent, Belgium; Department of
Geriatrics (I.J.v.E., R.D.P., S.V.C., N.J.V.D.N.), Ghent University Hospital, Ghent, Belgium; and
Department of Medical Oncology (N.C.V.), Ghent University Hospital, Ghent, Belgium

Abstract
Context. Advance care planning (ACP) is the process by which patients,
together with their physician and loved ones, establish preferences for future care.
Because previous research has shown that relatives play a considerable role in end-
of-life care decisions, it is important to understand how family members are
involved in this process.
Objectives. To gain understanding of the involvement of family members in
ACP for older people near the end of life by exploring their views and experiences
concerning this process.
Methods. This was a qualitative research study, done with semistructured
interviews. Twenty-one family members were recruited from three geriatric
settings in Flanders, Belgium. The data were analyzed using the constant
comparative method as proposed by the grounded theory.
Results. Family members took different positions in the ACP process depending
on how much responsibility the family member wanted to take and to what extent
the family member felt the patient expected him/her to play a part. The position
of family members on these two dimensions was influenced by several factors,
namely acknowledgment of the imminent death, experiences with death and
dying, opinion about the benefits of ACP, burden of initiating conversations about
death and dying, and trust in health care providers. Furthermore, the role of
family members in ACP was embedded in the existing relationship patterns.
Conclusion. This study provides insight into the different positions of family
members in the end-of-life care planning of older patients with a short life
expectancy. It is important for health care providers to understand the position of

Address correspondence to: Ineke J. van Eechoud, MSc, 185, B-9000 Ghent, Belgium. E-mail: ineke.
Faculty of Medicine and Health Sciences, Depart- vaneechoud@ugent.be
ment of Public Health, Nursing Science, Ghent Accepted for publication: June 14, 2013.
University, U.Z. Block A, 2nd Floor, De Pintelaan

Ó 2014 U.S. Cancer Pain Relief Committee. 0885-3924/$ - see front matter
Published by Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.jpainsymman.2013.06.007
Vol. 47 No. 5 May 2014 Advance Care Planning: Family Perspectives
a family member in the ACP of the patient, take into account that family members
may experience an active role in ACP as burdensome, and consider existing
relationship patterns. J Pain Symptom Manage 2014;47:876e886. Ó 2014 U.S.
Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Key Words
Advance care planning, terminal care, aged, family
Introduction
Advance care planning (ACP), the process
by which patients, together with their physi-
cians and loved ones, establish goals and pre-
ferences for future care, is widely encouraged
as a way to improve the quality of dying.1e6
ACP may lead to appointing a surrogate, de-
fined as a person acting on behalf of the pa-
tient, and/or drawing up a negative living
will and/or discussing broad values.
In Belgium, end-of-life care and ACP are
regulated by three laws. The law regarding pal-
liative care (2002) establishes the right for ho-
listic palliative care. In 2002, euthanasia was
legalized under strict conditions, such as un-
bearable suffering of the patient because of
an incurable or irreversible illness and a well-
considered, voluntary request by the patient
(Law on Euthanasia 2002). Third, the law re-
garding patients’ rights (2002) requires the
physician to communicate the diagnosis and
prognosis and to ask for informed consent
for all medical decisions and interventions un-
less the patient requires him not to do so. In
case of incompetence, the patient’s represen-
tativeda close relative unless the patient de-
cided otherwisedshould be involved.
There is a great need for understanding how
family members are involved in the ACP pro-
cess,7 because ACP does not occur solely
within the context of the physician-patient re-
lationship but also within relationships with
close loved ones.8 Families play important
roles in the practical and emotional aspects
of patient care,9 and patients strongly empha-
size the importance of designating someone
to make decisions for them.10e12 Family mem-
bers are often consulted in end-of-life care de-
cisions,13 and a high percentage of medical
decisions are made by surrogates.14,15
Some research has explored the perspec-
tives of family members regarding decision-
making.14,16e21 A few studies revealed patterns
877
or types of decision-making and showed that
relatives have varying preferences in terms of
level and scope of involvement in decision-
making.22e24 However, these studies did not
focus on the involvement of family members
of older patients in end-of-life decision-
making. The aim of this study was to gain
understanding of the involvement of family
members in the ACP of older people near
the end of life by exploring their views and ex-
periences concerning this process.
Methods
We used a qualitative methodology, with ele-
ments of constructivist grounded theory,25 as it
is well suited to gain insight into how family
members experience and view their role in
the process of ACP. Constructivist grounded
theory underpins a relativist position and as-
sumes that knowledge is constructed from an
interactive process between the researcher
and the participant.26
Recruitment of Participants
Close relatives of patients enrolled in a paral-
lel study on ACP in terminally ill and frail old-
er persons5 were approached with the patient’s
consent. Participants were recruited from
three geriatric settings in Flanders (Dutch-
speaking part of Belgium): nursing homes,
an academic hospital (the acute geriatric
ward, the medical oncology ward, and the pal-
liative care unit), and home services for older
people at home but requiring help for activi-
ties of daily living. We used the purposive sam-
pling method to gain rich information from
a range of perspectives.27 However, for prag-
matic reasons, we also relied to some extent
on convenience sampling.27 Family members
of patients aged 70 years or older with a limited
life expectancy (metastatic disease and/or pa-
tients whose death would not surprise the
878 van Eechoud et al. Vol. 47 No. 5 May 2014

health care provider if it occurred in the next Table 1

6 months) were included. The different illness
trajectories were taken into account during the
analysis. All participants were native Dutch
speakers.
Family members were defined as close rela-
tives. Fifteen family members were identified
through patients who participated in the paral-
lel study. The patient either gave permission
himself for the researcher to contact the close
relative, or the patient first asked the family
member’s permission. The remaining six par-
ticipants were identified directly by the health
care providers, without any participation of
the patient. These family members were ap-
proached directly because the patient was de-
ceased, not interested in participating in the
research project, or because the recruitment
of patients was completed. Family members
were selected by health care providers who
presumably had sufficient knowledge of the
family relations because of a close relationship.
The health care providers asked these family
members for permission for the researcher to
contact them. All 21 participants were in-
formed about the goal of the research and
the nature of the interview before the signing
informed consent and prior to the start of
the interview. All participants signed informed
consent and received a copy of the form.
The study protocol was approved by the
Ghent University Hospital Ethics Committee
(B67020096680).
Data Collection
Data were collected through semistructured
interviews. The interview framework (Appendix)
was developed by clinical and academic experts
in end-of-life care. The interviews had a mean du-
ration of 56 minutes (ranging between 20 and
124 minutes), and participants were interviewed
at a location of their preference. The inter-
viewers (I. J. v. E., S. V. C.) tried to elicit the follow-
ing information from the interviewees: personal
narratives of their experiences with the patient’s
disease, their opinion about planning the pa-
tient’s end-of-life care, and their role in the
end-of-life care planning. The interviewers used
the phrase ‘‘living will’’ to focus the conversation
on ACP.
The characteristics of the 21 family members
are reported in Table 1. The age of the pa-
tients for whom family members were
Family Member Characteristics (N ¼ 21)
Characteristic n
Relationship to patient
Spouse
Husband 6
Wife 4
Child
Daughter 6
Son 3
Other
Nephew 1
Female partner 1
Patient health status
Metastatic cancer 15
Frail older person (death would not be a surprise 6
if it occurred in the next 6 months)
Deceased by the time the interview took place 2
Patient location
Nursing home 3
Hospital 9
Home care 9
interviewed ranged from 69 to 104 years. All
patients were able to communicate at the
time of the interview with the family member,
or, in two cases, until a few days before they
died. Although the family members were asked
to be interviewed alone, at the request of the
participants themselves, two family members
were interviewed together with the patient
and three interviews were conducted in the
presence of the patient or another family
member. Interviews were audio-taped and
transcribed verbatim by a nonmember of the
research team.
The interviews, as well as the analysis, were
conducted in Dutch. The illustrative quotes
in this article were translated into English
and cross-checked by two researchers.
Data Analysis
Data collection and data analysis were alter-
nated in a cyclic process. The constant compar-
ative method was used in the analytic process,
which is one of the defining components of
grounded theory.25 Four investigators (I. J. v.
E., R. D. P., S. V. C., M. G.) read and discussed
the transcribed interviews together to explore
the meaning of the narrative. By continually
comparing fragments within and between the
transcribed interviews, categories were identi-
fied and a theoretical framework was devel-
oped. Positional maps were made to represent
the full range of positions28 of family members
in the process of ACP. Two researchers (I. J. v.
Vol. 47 No. 5 May 2014 Advance Care Planning: Family Perspectives
E., S. V. C.) coded the transcripts independently
with the use of NVivo qualitative data analysis
software (Version 8, QSR International Pty
Ltd., Cheshire, UK). Findings from the first in-
terviews were checked and reviewed when
themes emerged from later interviews. All deci-
sions were made by the four researchers in-
volved in the data analysis (researcher
triangulation), which contributed to the credi-
bility of the analysis.29
Results
Lack of Accurate Knowledge
Several family members, mainly spouses,
lacked accurate knowledge about ACP. They
either had never heard of or thought about it,
or those who said they had considered ACP in-
terpreted advance directives sometimes differ-
ently from the meaning they have in Belgian
law. They made wrong assumptions about the
legislation concerning euthanasia or the con-
ditions for representing the patient. On the
basis of these wrong assumptions, they be-
lieved that they were able to represent the pa-
tient or that euthanasia requests would be
granted, although conditions had not been
fulfilled. For example, there were spouses
who told each other they wanted euthanasia
in case ‘‘it cannot go on’’ and believed it would
be performed although legal conditions had
not been met. One spouse, in discussing her
husband’s ACP in the interview, narrowed
ACP down to the decision whether the patient
would or would not stay at home toward the
end of his life and did not consider other
(medical) decisions.
Different Positions of Family Members
Family members took different positions in
the end-of-life care planning for the older pa-
tient with a limited prognosis. This position
depended on 1) the degree to which the fam-
ily member wanted to take responsibility for
the end-of-life decisions of the patient and 2)
the degree to which the family member felt
the patient expected him/her to play a role
in the decision-making. These two dimensions
can be represented visually as axes in a coordi-
nate system (Fig. 1, inner circle).
Five positions are discussed to clarify the dif-
ferences in the positions family members took:
879
Fig. 1. Positions of family members in advance care
planning.
the midpoint and the extremes of the co-
ordinate system (Fig. 1, inner circle). It is im-
portant to emphasize that many participants
were situated in the continuum between these
extremes and the midpoint.
Burdened With Decision-Making
Family members in this position did not
want to be responsible for decision making
but strongly felt the expectation of the patient
for them to make decisions. This responsibility
caused them to feel burdened, and conse-
quently they experienced considerable ten-
sion. All family members in this position were
nonspouses, namely daughters (Table 2, Q1).
These family members mentioned they
feared future feelings of regret. Fear of making
the wrong decisions and fear of being blamed
by brothers/sisters or of betraying the patient’s
confidence were reported as reasons for expe-
riencing this responsibility as burdensome
(Table 2, Q2).
Feeling Disowned by Being Excluded From
Decision-Making
In a second position, family members
strongly wanted to be involved in the decision
making, but they did not feel the patient ex-
pected them to be involved. Being excluded
caused them feelings of being disowned.
They felt that either the patient did not want
to make end-of-life decisions or that the
880 van Eechoud et al. Vol. 47 No. 5 May 2014

Table 2
Different Positions of Family Members in ACP: Illustrative Quotes
Position of
Family Member Illustrative Quotea

Burdened with decision-making

Q1 ‘‘If something needs to be decided, I am the one to do it. They will always say: ‘Andrea, what would you do?’
But I will have to decide. Well, it is always difficult to make a decision for someone else. It is difficult.’’
(Daughter)
Q2 ‘‘They [parents] said, yes, you have a medical background. So you are my surrogate decision maker. I didn’t
agree with that. I said, I have four brothers and sisters. (.) I wouldn’t want them to blame me.’’
(Daughter)
Feeling disowned by being excluded from decision-making
Q3 ‘‘I say, ‘Louis, please, say what you have said to me [about end-of-life decisions].’ He replied: ‘I do not care
about it all, do whatever you want with me.’ And I was back to square one.’’ (Partner)
Permitted to avoid decision-making
Q4 ‘‘He [the patient] always took the first steps [in end-of-life decision-making]. I never interfered (.) I am glad
he gave it thorough consideration and acted very consciously. It feels like a weight has been lifted off my
shoulders.’’ (Nephew)
Q5 ‘‘If you do not know much about something, you better remain silent, isn’t it? My sister, she is a nurse after all
and she knows better what is possible and what isn’t.’’ (Son)
Permitted to take direction in decision-making
Q6 ‘‘She doesn’t want to be resuscitated, under no circumstances. Oxygen I did allow, oxygen yes. Morphine too,
yes. Morphine also for the end-of-life.’’ (Daughter)
Together in decision-making
Q7 ‘‘We never discussed it [ACP], not to mention wrote it down.’’ (Husband)
Q8 ‘‘I could make [end-of-life] decisions for him (.) because I know how far my husband would go (.) This
was only discussed among us, the children were not involved. He [husband] always told me not to tell them
about it. The children know what I want, though. I am a bit more frank. My husband is close-mouthed.’’
(Wife)
ACP ¼ advance care planning.
a
The illustrative quotes have been slightly edited for reading ease. To ensure anonymity, all names in the illustrative quotes are fictive.

patient wanted to make end-of-life decisions
without their involvement.
A daughter, whose mother included a written
request for euthanasia in her ACP, was afraid
her mother would not tell her in advance
when the euthanasia would be performed.
She feared not being able to say goodbye. Nev-
ertheless, to avoid further conflict, she decided
not to ask her mother to inform her when eu-
thanasia would be performed.
For some family members, being excluded
caused strong feelings of being disowned.
This was most strongly the case with the part-
ner of a man in a palliative care unit. She
wanted to be involved in the end-of-life deci-
sions but the patient did not want to make
any nonmedical or medical end-of-life deci-
sions at all. This gave her a feeling of being de-
nied (Table 2, Q3).
Permitted to Avoid Decision-Making
In the third position, family members did
not want to be responsible in the decision-
making process, and did not feel the patient
expected them to be involved because the pa-
tient did not intend to make any end-of-life de-
cisions or the patient did not want them to be
involved. These family members were mostly
nonspouses.
A nephew was the closest relative of a 92-year-
old patient. He felt morally obliged to take care
of his uncle. The uncle arranged his own non-
medical and medical end-of-life decisions, and
the nephew experienced this as a weight being
taken off his shoulders (Table 2, Q4).
Another family member in this position was
a son who left his father’s medical care up to
his sister. In case decisions needed to be made,
he believed his sister, a nurse, was the right per-
son to take on the responsibility (Table 2, Q5).
Permitted to Take Direction in Decision-
Making
In the fourth position, family members
strongly wanted to be involved in the decision-
making, and they felt the patient wanted them
to play a directing role. These family members
seemed to have a strong need for control and
for them it was natural to make decisions in daily
life as well as end-of-life care decisions for the
patient.
A daughter planned the ACP of her 100-
year-old mother living in a nursing home. Pre-
paring ACP to her was naturald‘‘Our family is
Vol. 47 No. 5 May 2014 Advance Care Planning: Family Perspectives 881

organized’’dand as an only child, it was obvi-
ous to her that she was the one to take care
of the advance directives. The interview
showed she was the one who made the end-
of-life care decisions instead of her mother
(Table 2, Q6).
members explicitly mentioned that they wanted
the physician to be proactive in informing the
patient about ACP and/or in announcing the
imminent death, as this information legitimized
the family member to communicate about end-
of-life care planning.

Together in Decision-Making Factors Influencing the Family Member’s

Family members in the fifth position felt
a concordance with the patient about desir-
ability of end-of-life care planning and about
the shared role in it. ‘‘Togetherness’’ was prom-
inent in their stories and ‘‘for better or for
worse’’ was explicitly or implicitly mentioned
as the desired standard. For them, end-of-life
care planning was a matter of mutual concern.
As a consequence they ‘‘decided’’ together to
make or not make end-of-life decisions. This
position was only taken by spouses (Table 2,
Q7 and Q8).
The degree to which the family member
wanted to take responsibility did not always cor-
respond to the degree to which the family mem-
ber felt the patient expected him/her to play
a role in the decision making. This caused ten-
sions. In these tense situations, there was an im-
portant role for the physician. Some family
Position in ACP
Several factors influenced how much respon-
sibility the family member wanted to take and/
or to what extent the family member felt the pa-
tient expected him/her to play a part (Fig. 1,
middle circle).
Acknowledging the imminent death of the
patient seemed a prerequisite for wanting to
take responsibility in the ACP of the patient.
All but one family member acknowledged the
patient’s imminent death; one husband was
not willing to talk about his wife’s end-of-life
care planning as it was too stressful for him
to accept that she was dying.
Another influential factor was the experience
family members had with death and dying.
Many family members had at least some experi-
ence with death and dying, and this experience
affected to what extent the topics of ACP had

Table 3
Factors Influencing the Position of Family Members in ACP: Illustrative Quotes
Factor of
Influence Illustrative Quotea

Experiences with death and dying

Q9 ‘‘She [sister] always kept the will to live: ‘I will be cured, I will be cured.’ I thought it was so horrible. It made me
think a lot about the meaning of life when you are seriously ill.’’ (Wife)
Opinion about the benefits of advance care planning
Q10 ‘‘I would strongly prefer he writes it [ACP decisions] down, as I always tell in my lectures about advance directives,
when you do not know or it isn’t written down, or as in most cases hasn’t been decided yet, it causes a lot of
complications (.) When written down, it clarifies things. Additionally, if he, for example, lapses into a coma, I
will need a paper to prove his wish [termination of life]. If it happens now, I will have to depend on the good will
of the physicians.’’ (Son)
Q11 ‘‘Since my parents never planned anything I am faced with many issues now. I ask myself, would dad have wanted
this or would he have preferred that . ? Because they didn’t talk about it. I think that’s difficult for children,
when they end up in this situation, not knowing what the right thing to do is.’’(Daughter)
Burden of initiating
Q12 ‘‘And I do not want to take him unawares anymore. No, because he would think, the end is near (.) Because he
used to avoid the subject [death and dying], I definitely will not burden him with it anymore now.’’ (Daughter)
Q13 ‘‘My husband would say: ‘You are certainly waiting for me to die.’ These are the kind of expressions which I already
had to deal with. (.) And confidential advisors should be present. Or a physician or a psychologist or palliative
support.’’ (Wife)
Trust in health care providers
Q14 ‘‘When the time has come, then you will go to the family doctor (.) That is in the hands of science. I believe I
think that it will not cause any problems for me. So, why should I sign it then (.) The physician [general
practitioner] will try to do the right thing.’’ (Husband)
Q15 ‘‘Because of the very good cooperation with the physician, it wasn’t necessary to do that [filling in advance
directives], right.’’ (Daughter, after death of the patient)
ACP ¼ advance care planning.
a
The illustrative quotes have been slightly edited for reading ease.
882 van Eechoud et al.
concrete meaning to them. One wife who per-
ceived her sister’s struggle for life as ‘‘horrible’’
explained that this experience, among others,
made her and her husband think about quality
of life vs. prolongation of life. They told each
other that they preferred death to useless suffer-
ing (Table 3, Q9).
The opinion of family members about the
benefits of ACP had an impact on the extent
to which they wanted to take responsibility in
ACP. Fearing future feelings of regret was a rea-
son for family members to believe ACP could be
beneficial. Some participants, who had a posi-
tive opinion about ACP, were aware that the pa-
tient felt differently. The difference in opinion
was a reason for them to put more effort in
ACP and/or for taking more responsibility in
the end-of-life care of the patient (Table 3,
Q10). The daughter of a patient admitted to
a palliative care unit, who did not want to plan
his own end-of-life care, felt burdened with
decision-making because she needed to make
the end-of-life decisions without any knowledge
of her father’s wishes (Table 3, Q11). However,
approximately half of the family members be-
lieved their opinion about the benefit of ACP
was in accordance with the patient’s opinion,
which lessened the value they attached to taking
responsibility for their loved one’s ACP.
Most of the family members considered the
initiation of conversations about death and dy-
ing to be burdensome, either because death
and dying had always been a taboo subject
for the patient or because they wanted to spare
their loved one this emotional issue, especially
at the end of life (Table 3, Q12). A few family
members feared reactions of blame from the
patient, as the patient might believe they
were waiting for him/her to die (Table 3,
Q13). However, for a few family members,
starting a conversation about ACP did not
feel burdensome at all. These were the family
members who, as mentioned above, were in
charge of the patient’s decision making and
Table 4
Long-Lasting Family Dynamics: Illustrative Quotes
Family Dynamics
Used to giving freedom ‘‘All our lives, we got along well and nothing happened unless she planned it. So, now it
Q16 will be the same.’’ (Husband)
Used to making decisions ‘‘.because they know me very well (.) If I’ll do that, it will be fine (.) Of course. I am the
Q17 boss. And if it’s not OK, I’m the one to blame.’’ (Wife)
a
The illustrative quotes have been slightly edited for reading ease.
Vol. 47 No. 5 May 2014
who were used to making decisions in daily
life.
A last factor of influence was the family
member’s trust in health care providers. A
few family members trusted the physician
and were convinced that he/she would do
the right thing toward the end of the patient’s
life. This was a reason for not putting any ef-
fort in ACP or advance directives, even though,
in general, they acknowledged the benefit of
ACP (Table 3, Q14). For example, a daughter
was convinced the physician would respect
the end-of-life care decisions she and her
family would suggestdbased on her father’s
wishesdwithout the patient having any written
advance directives (Table 3, Q15). For others
ACP was not necessary because they believed
the health care providers would provide the
best care at the patient’s end of life.
Long-Lasting Family Dynamics
The interviews also showed that the way fam-
ily members positioned themselves in the ACP
of the patient was a continuation of their rela-
tionship patterns and stemmed from long-
lasting family dynamics (Fig. 1, outer circle).
Family members who were used to giving the
patient the freedom to make his/her own
choices did so in end-of-life issues too, even
when the choices the patient made would
not be theirs. For example, a husband was
not in favor of euthanasia because it would
cause a sudden death, and he preferred to
be able to say goodbye to his wife peacefully.
He nevertheless reconciled himself to his
wife’s wish for euthanasia (Table 4, Q16).
Family members who were used to making
decisions in daily life also made the decisions
toward the end of the patient’s life. For exam-
ple, a wife said that, of course, her family mem-
bers would not take issue with her decisions
because she is ‘‘the boss’’ (Table 4, Q17).
The importance of long-lasting family dy-
namics also became apparent from the
Illustrative Quotea
Vol. 47 No. 5 May 2014 Advance Care Planning: Family Perspectives 883

Table 5
Implications for Health Care Providers
Inform patient and family members about ACP and advance directives.
Consider the long-lasting family dynamics and try to gain insight into the specific position a family member takes.
Take into account that the position a family member has in the end-of-life care planning of the patient depends on:
1) the degree to which the family member wants to be involved
2) the degree to which the family member feels the patient expects him/her to be involved
Support and guide family members in ACP, especially when they experience an active role as burdensome.
ACP ¼ advance care planning.

narratives of the family members who were ‘‘to-
gether in decision making.’’ As mentioned pre-
viously, ‘‘togetherness’’ was prominent in their
stories and they ‘‘decided’’ together to make or
not to make end-of-life decisions.
Discussion
In this study, family members of older pa-
tients with a limited life expectancy took differ-
ent positions in the process of end-of-life care
planning, depending on 1) how much respon-
sibility the family member wanted to take and
2) to what extent the family member felt the
patient expected him/her to play a part. To
our knowledge, this is the first study to identify
different positions of family members in this
process.
In cases when the responsibility family mem-
bers are willing to take corresponds to the ex-
pectations they believe the patient has, family
members take a congruent position in the
ACP of the patient. In cases of an incongruent
position, family members experience consider-
able tension and seem to prefer an active role
of the physician. For example, by announcing
the imminent death of the patient, the physi-
cian legitimizes communication about end-of-
life care planning.30
This study brought to light several factors
influencing to what extent family members
wanted to take responsibility and/or to what
extent they felt the patient expected them to
play a part in ACP. The most relevant factors
for health care providers are: the experiences
of family members with death and dying and
the burden to initiate conversations on the
subject.
The experiences of family members with
death and dying affected to what extent the
topics of ACP had concrete meaning to
them. This amplifies the result of an earlier
study revealing that ‘‘previous experiences
shape [family] caregivers’ attitudes and greatly
affects their decision-making behaviors.’’31
Within the topic of end-of-life care, some other
studies have emphasized the importance of
previous experiences.5,12,32e35
Most of the family members perceived the ini-
tiation of conversations about death and dying
as burdensome. The results also showed that
many nonspouses in particular perceive taking
part in end-of-life decision making as burden-
some in general. This indicates that taking
part in end-of-life care decisions of older pa-
tients fits less in the relationship patterns of
nonspouses compared with those of spouses.
This finding is consistent with other qualitative
research showing that friends, neighbors and
nonspousal caregivers may be less comfortable
with decision-making roles.24
The position family members took in end-
of-life care planning was embedded in long-
lasting family dynamics.23 This underlines
the importance of recognizing the role of
family dynamics in good patient care9,36 and
the need to adjust each patient’s ACP to his
personal context,37 suggesting the im-
portance of continuity of care by health care
providers known to the family. Glass and Na-
hapetyan mentioned family dynamics as one
of the barriers for discussing end-of-life pre-
paration and preferences.7 Our study revealed
that the way family members positioned them-
selves stemmed from their long-lasting family
dynamics.
Finally, several family members in this study
lacked accurate knowledge about ACP, which
is in line with previous research.34,38,39 Family
members lack knowledge about the ACP legis-
lation of their particular country, for example,
participants in this study who made wrong as-
sumptions about the Belgian Law on Euthana-
sia or conditions for representing the patient.
This finding also supports research showing
that conversations about ACP, even with ‘‘expe-
rienced’’ surrogates, are generally vague,
884 van Eechoud et al.
suggesting that the average surrogate seems to
be quite unprepared for future end-of-life
decision-making.14
Limitations
The study had several limitations. A majority
of the participating family members were iden-
tified through the patient. As refusal might be
more common in case of tense family relation-
ships, this category of family members may be
relatively unrepresented.
This study comprises a first exploration of
positions of family members in this process
and identifies several influencing factors.
Given the wide variety we found in positions
and influencing factors, the sample was rela-
tively small and theoretical saturation was not
achieved. Further research with a larger sam-
ple could explicate the different positions
and influencing factors.
Despite the fact that only native Dutch
speakers in Flanders were interviewed, we be-
lieve that the findings are more widely applica-
ble than to this population only, as they refer
to general aspects of the experiences and views
of family members in end-of-life care for older
patients.
Conclusion
This study provides insight into the different
positions family members take in the end-of-
life care planning for older patients with
a short life expectancy. Table 5 summarizes
the main implications for health care pro-
viders. Two important dimensions should be
taken into account as a health care provider:
1) the degree to which the family member
wants to be involved, and 2) the degree to
which the family member feels the patient ex-
pects him/her to be involved. Subsequently, it
is important for health care providers to gain
insight into the specific position a family mem-
ber takes in the end-of-life care planning for
the patient.
Because family members might lack accu-
rate knowledge about ACP and advance direc-
tives, professional health care providers should
inform patient and family members and pre-
vent miscommunication. Health care pro-
viders need to bear in mind that family
members can experience an active role in
Vol. 47 No. 5 May 2014
ACP as burdensome and that it can be a source
of tension between the patient and his/her
family. It is recommended to support and
guide the family and not to make surrogates
feel that they are taking full responsibility for
medical end-of-life decisions.40 Physicians may
unburden these family members by telling
them which end-of-life care options make
most sense to them: ‘‘Knowing the patient,
this seems most appropriate. Can you agree
with that?’’
Finally, as a health care provider, it is impor-
tant to consider the long-lasting family dynam-
ics involved and take them into consideration,
both for the benefit of the patient and for the
well-being of family members.41
Disclosures and Acknowledgments
This study was funded by a grant from the
Belgian Federal Public Service of Health
[NKP_24]. The funder had no role in the
study design, or in the collection, analysis, in-
terpretation or presentation of the informa-
tion. All authors declare no conflicts of
interest.
The authors thank the participants who
were willing to share their time and thoughts.
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Topics
Start
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Care - In broad sense
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Family Care: positive and negative aspects
Medical end-of-life care planning
Advance Care Planning
End
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Appendix
Interview Guide
Possible Questions
As mentioned in the informed consent, I know nothing about the medical
file of your relative. Can you tell me what is going on?
How does your relative’s disease affect you?
During the course of the patient’s disease, he/she has been in contact with
physicians and nurses many times.
Are/were you involved closely?
What are your experiences?
What role do you have in the care of your family member?
How do you experience the caregiving for your family member?
Some people want to make a living will before they get very ill, others do
not. What is your opinion on the subject?
How would you feel if your family member would do this?
Do you want to take part in it? If yes, which role? Why would or wouldn’t
you?
Did you ever discuss it with your family member?
If yes
How did it go and how did you experience it?
What has been discussed?
Who initiated this conversation?
Was the physician involved?
If no
Do you want to talk about it? Why would you or wouldn’t you?
Who can initiate this subject best?
What role should the physician have in it?
Do you know what your family member wants (concerning ACP) and how
do you deal with that?
Would you like the wishes of the patient to be written down? Why would you
or wouldn’t you?
Has a surrogate decision maker been appointed?
If no, would you be willing to accept this task? Why would you or wouldn’t
you?
Final question: How did you feel having this conversation?