Instructions
For this assignment, complete the following:
- Review the Toulmin-model outline (Week 2 Lesson) and your completed Week 1 Assignment (Pro-Position Proposal). Assess any feedback provided by the professor and/or your peers.
- Compose a position paper representing the pro side of your topic. (See the Pro-Paper Template). The paper should include approximately 6 developed paragraphs:
Introduction (with thesis statement)
Context paragraph
3 body paragraphs (focusing on 3 pros)
Conclusion - Apply a formal tone appropriate for academic audiences, maintaining an objective 3rd person point of view – no 1st person (I, me, my, we, our, us, mine) or 2nd person (you, your). Avoid contractions, clichés, and slang terminology.
- Use the provided template to assist in formatting the title page and headers.
- Incorporate at least 3 scholarly sources into the paper. Cite all sources in APA format, both parenthetically and on a reference page.
- Before submission, proofread and edit carefully for spelling, punctuation, and grammar. Not every error will be flagged automatically in word-processing programs, and some that are flagged as errors are actually correct.
Writing Requirements (APA format)
- Length: 2-3 pages (not including title page or references page)
- 1-inch margins
- Double spaced
- 12-point Times New Roman font
- Title page
- References page (minimum of 3 academic articles)
Grading
This activity will be graded using the Pro-Position Paper Grading Rubric.
Course Outcomes (CO): 3, 6
Due Date: By 11:59 p.m. MT on Sunday
Family Perspectives on Deceased Organ Donation:
Thematic Synthesis of Qualitative Studies
A. Ralph1,2,*, J. R. Chapman3, J. Gillis4,5,
J. C. Craig1,2, P. Butow6,7, K. Howard2,
M. Irving
1,2
, B. Sutanto
1,2
and A. Tong
1,2
1
Centre for Kidney Research, The Children’s Hospital at
Westmead, Westmead, NSW, Australia
2
Sydney School of Public Health, The University of
Sydney, Sydney, NSW, Australia
3
Centre for Transplant and Renal Research, Westmead
Hospital, NSW, Westmead, Australia
4
Centre for Values, Ethics and Law in Medicine, The
University of Sydney, Sydney, NSW, Australia
5
Paediatrics and Child Health, The Children’s at Hospital,
Westmead, NSW, Australia
6
Psycho-Oncology Co-Operative Research Group, The
University of Sydney, Sydney, NSW, Australia
7
Centre for Medical Psychology and Evidence-Based
Decision-Making, The University of Sydney, Sydney,
NSW, Australia
�Corresponding author: Angelique Ralph,
angelique.ralph@sydney.edu.au
A major barrier to meeting the needs for organ
transplantation is family refusal to give consent. This
study aimed to describe the perspectives of donor
families on deceased donation. We conducted a
systematic review and thematic synthesis of qualita-
tive studies. Electronic databases were searched to
September 2012. From 34 studies involving 1035
participants, we identified seven themes: comprehen-
sion of sudden death (accepting finality of life,
ambiguity of brain death); finding meaning in donation
(altruism, letting the donor live on, fulfilling a moral
obligation, easing grief); fear and suspicion (financial
motivations, unwanted responsibility for death, medi-
cal mistrust); decisional conflict (pressured decision
making, family consensus, internal dissonance, reli-
gious beliefs); vulnerability (valuing sensitivity and
rapport, overwhelmed and disempowered); respecting
the donor (honoring the donor’s wishes, preserving
body integrity) and needing closure (acknowledgment,
regret over refusal, unresolved decisional uncertainty,
feeling dismissed). Bereaved families report uncertainty
about death and the donation process, emotional and
cognitive burden and decisional dissonance, but can
derive emotional benefit from the ‘‘lifesaving’’ act of
donation. Strategies are needed to help families under-
stand death in the context of donation, address anxieties
about organ procurement, foster trust in the donation
process, resolve insecurities in decision making and gain
a sense of closure.
Keywords: Deceased donor, family, organ and tissue
donation, qualitative research
Abbreviations: CINAHL, cumulative index for nursing
and allied health literature; COREQ, Consolidated
Criteria for Reporting Qualitative Health Research;
NHS, National Health Service
Received 07 November 2013, revised and accepted for
publication 27 December 2013
Introduction
One of the major barriers to meeting the needs for organ
transplantation in more than 50 countries of the world,
including the United States, the United Kingdom and
Australia, is that the consent of families is required (1–3).
The family consent rate is 60% (4) in the United Kingdom
and 54% (5) in the United States.
Approaching grieving families with requests to donate
organs from a recently deceased relative require families to
make the difficult decision under very distressing circum-
stances (6). In spite of support for donation in principle in the
general community, this is not always reflected in the actual
rates of donation (7). Consent to donation is less likely when
there is family conflict (8); where there is a lack of rapport
with healthcare providers; where requests are ill-timed; and
where families are dissatisfied with care (9–12).
Review of the families’ perspectives in deceased organ
donation has usually focused on the meaning of brain death
and modifiable factors influencing the decisions of relatives
to agree to the donation of their deceased family member’s
organs (13–16). We undertook a systematic review and
thematic synthesis of qualitative studies of the experi-
ences, attitudes and beliefs of families on organ donation
(17). A broad understanding of family perspectives may
help inform best practice service, end-of-life care and
contribute to improve the donation process.
Materials and Methods
Data sources and searches
The search strategy is provided in Table S1. The searches were conducted in
MEDLINE, Embase, CINAHL and PsycINFO from inception to September 3,
American Journal of Transplantation 2014; 14:
923
–935
Wiley Periodicals Inc.
�C Copyright 2014 The American Society of Transplantation
and the American Society of Transplant Surgeons
doi: 10.1111/ajt.12660
923
2012. We also searched Google Scholar, PubMed and reference lists of
relevant articles and reviews. One author (AT) screened the titles and
abstracts and excluded those who did not meet the inclusion criteria. Full
texts of potentially relevant studies were obtained and assessed for
eligibility.
Study selection
Qualitative studies that examined the perspectives of family members on
deceased organ and tissue donation for transplantation were included.
Studies that involved family members (parents, spouses, siblings, close
relatives and friends) whose relative had died and were approached about
organ donation were included. Articles were excluded if they used
structured surveys, or were epidemiological studies, editorials or reviews.
Non-English articles were excluded due to lack of resources for translation
and limited feasibility in understanding and synthesizing cultural and
linguistic nuances; and to avoid potential misinterpretation of the author’s
study.
Data extraction and quality assessment
For each study, we assessed the transparency of reporting as this can
provide contextual details for the reader to evaluate the credibility,
dependability and transferability of the study findings to their own setting.
We adapted the Consolidated Criteria for Reporting Qualitative Health
Research (COREQ) framework, which included criteria relating to the
research team, study methods, context of the study, analysis and
interpretations (18). Authors AR and BS independently assessed each
study and met regularly to resolve any differences.
Synthesis
Thematic synthesis is used to integrate the findings of multiple qualitative
studies that address questions about people’s perspectives and experi-
ences. This methodology involves the translation of concepts across studies
to develop descriptive and analytical themes grounded in qualitative data
(17). We extracted all text under the ‘‘results/findings’’ or ‘‘conclusion/
discussion’’ section of the article (17,19). These were entered verbatim into
HyperRESEARCH (ResearchWare, INC.2009, version 3.0.3; Randolph, MA),
software for coding textual data. To allow interpretation of data in its context
and generation of analytical higher-order themes, AR performed line-by-line
coding of the findings of the primary studies and identified preliminary
concepts inductively by coding text that focused on family experiences and
perspectives on organ donation. Similar concepts were grouped into
themes. To ensure that the coding framework and themes captured all the
relevant data from the primary studies, this was discussed with AT, who
reviewed the articles independently. Relationships between themes were
identified, examined and mapped to develop an overarching analytical
framework to extend findings reported by the primary studies.
Results
Literature search and study characteristics
Our search yielded 2043 citations. Of these, 34 articles
involving at least 1035 family members were included (two
studies did not report the number of participants) (Figure
S1). At least 672 of the families had consented to donation
and 244 had not consented to donation. The study
characteristics are summarized in Table 1. The studies
were conducted across 13 countries listed in Table 1. Data
were collected using semi-structured interviews, focus
groups and open-ended surveys.
Comprehensiveness of reporting
Comprehensiveness of reporting was variable with studies
reporting 6–18 out of the 27 possible items included in the
COREQ framework (Table S2). Twenty-four studies re-
ported the participant selection strategy. A description of
the sample was provided in 25 studies. Almost half of the
primary studies reported the use of member or investigator
checking to ensure that the findings reflected the data
collected. Only one study specified whether theoretical
saturation was reached.
Synthesis
We identified seven themes with respective subthemes as
shown in Table 2. Quotations from the studies are provided
in Table 3 to illustrate each theme. The conceptual links
among themes are provided in Figure 1. The positive
perceptions of deceased donation delineated in the
thematic schema mostly reflect data from families who
consented, while the negative perceptions mostly reflect
data from families who did not consent to donation. Across
all themes, there was an undercurrent of vulnerability and
difficulty in comprehending unexpected death. Families
believed in honoring their relative’s wishes to donate and
thus reinforcing positive meaning in donation. For some,
there was a tension between preserving the integrity of
their relative’s body and mistrust in the medical and organ
procurement process. The importance of finding meaning
in donation meant that families valued gaining a sense of
closure. Decisional conflict could, however, lead to unre-
solved uncertainties about the decision to donate after
donation.
Comprehension of Unexpected Death
Accepting finality of life
Participants struggled to accept the unexpected death of
their loved one. Some doubted their relative had ‘‘died’’ and
held hopes for their survival, and were therefore unwilling
to consent to donation. They were anxious about being
unable to see their relative after the donation and many did
not accept they were ‘‘gone.’’ However, participants felt
better able to acknowledge death if they observed brain
stem testing, received ‘‘clear, direct and progressive
information about the patient’s deterioration’’ (20) or had
the opportunity to view the autopsy report or donor’s body
after donation.
Ambiguity of brain death
Participants sought more comprehensive information about
howbraininjurywas definedand medicallyconfirmed. Some
couldnotcomprehendtheinformationandfeltoverwhelmed
by the technical language; or reported receiving discrepant
information (e.g. about time ofdeath)from different sources,
which added to their confusion and frustration. Visual aids or
viewingbrain stemtestinghelped them to betterunderstand
brain death.
Ralph et al
924 American Journal of Transplantation 2014; 14: 923–935
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Family Views on Deceased Donation
925American Journal of Transplantation 2014; 14: 923–935
T
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.
Ralph et al
926 American Journal of Transplantation 2014; 14: 923–935
Finding Meaning in Donation
Saving lives
Donation was perceived to improve survival and quality of
life in patients requiring a transplant, and participants
believed consent to donation should be given without
expecting anything in return. They believed in the
‘‘goodness of organ donation’’ and that it was a worthwhile
decision to save lives (21).
Letting the donor live on
For some participants, consenting to donation meant their
loved one would continue to live on in the body of another
person. They felt a sense of comfort and relief as they
believed donation perpetuated their relative’s ‘‘aliveness’’ and
that their presence had not completely departed from them.
Fulfilling a moral obligation
Three studies reported that participants felt the decision to
donate was instantaneous and underpinned by social duty.
Participants believed that ‘‘helping ill people in society with
no loss to oneself or the deceased person was the right
thing to do’’ (22). However, others felt their decision was
strongly influenced by the moral beliefs of their spouse,
close friends and staff, and believed they had no choice but
to consent to the donation, even when the donors’ wishes
were unknown, for example, in donating the organs of a
child.
Easing grief
Donation was seen as a powerful diversion from grief and
provided ‘‘relief, tranquility and a sense of purpose’’ (23) as
family members focused on the positive outcome of
helping someone else to live, achieved through their
tragedy. There was also a perception of ‘‘donation as a
cause for celebration’’ (22). In one study, families of
younger donors believed that donation was a way to help
cope with their child’s death.
Fear and Suspicion
Financial motivations
In one study conducted in Taiwan, participants reported
that distant family members were sceptical of their decision
to donate (24). They were accused of donating to receive
monetary payment for funeral expenses provided by the
hospital, and felt frustrated about having to defend their
decision to donate.
Unwanted responsibility for death
Participants in Brazil and Greece believed that agreeing to
organ donation meant they would be consenting to the
killing of their loved one or ‘‘signing their death confirma-
tion’’ (25).
Medical mistrust
Some participants expressed misgivings about the health-
care system. Participants in the United States, the United
Kingdom, South Africa and Spain questioned the standard
of medical care provided to donors and did not trust the
organ donation process. Some believed that doctors had
removed body parts that the family had not consented to.
Participants felt reassured if healthcare providers explained
the high degree of medical care they were providing to their
relative. Mistrust of organ allocation was reported in the
United States where African American participants be-
lieved that ‘‘rich or famous’’ individuals were more likely to
be allocated organs than other patients (26). In another
study conducted in South Africa, one family felt they were
racially discriminated against and merely used to supply
organs (27), and another reported a ‘‘failure of the justice
and security systems’’ if their relative was a victim of a
criminal act such as murder, and were wary their
community would think they were ‘‘disposing of [the]
organs contemptuously’’ (27).
Decisional Conflict
Pressured decision making
Often, the death of the relative was unexpected and
participants described feeling a sense of ‘‘chaos,’’ ‘‘shock’’
and ‘‘panic.’’ They felt ‘‘emotionally and cognitively ill-
equipped to respond’’ (12) to the organ donation request.
The request for organ donation was sometimes felt to be
Table 2: Themes
Comprehension of unexpected death
Accepting finality of life
Ambiguity of brain death
Finding meaning in donation
Saving lives
Letting the donor live on
Fulfilling a moral obligation
Easing grief
Fear and suspicion
Financial motivations
Unwanted responsibility for death
Medical mistrust
Decisional conflict
Pressured decision making
Family involvement and consensus
Internal dissonance
Adhering to religious beliefs
Vulnerability
Valuing sensitivity and rapport
Overwhelmed and disempowered
Respecting the donor
Honoring the donor’s wishes
Preserving body integrity
Needing closure
Appreciating acknowledgment
Knowing recipient outcome
Unresolved decisional uncertainty
Feeling dismissed
Family Views on Deceased Donation
927American Journal of Transplantation 2014; 14: 923–935
T
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th
A
c
c
e
p
ti
n
g
fi
n
a
li
ty
o
f
li
fe
W
h
e
n
a
p
a
re
n
t
a
c
c
e
p
te
d
th
e
ir
re
v
e
rs
ib
il
it
y
o
f
d
e
a
th
h
e
o
r
s
h
e
te
n
d
e
d
to
c
o
n
s
e
n
t
(G
re
e
c
e
)
(4
8
)
(6
,2
3
,2
5
,
3
0
–
3
2
,4
8
,5
0
–
5
6
,
5
7
–
5
9
,6
3
)
F
o
r
o
th
e
r
re
la
ti
v
e
s
,
s
e
e
in
g
th
e
c
o
rp
s
e
g
a
v
e
c
e
rt
a
in
ty
:
‘‘
N
o
w
h
e
w
a
s
re
a
ll
y
d
e
a
d
.’
’
(S
w
it
z
e
rl
a
n
d
)
(5
1
)
‘‘
I
n
e
e
d
e
d
to
b
e
s
u
re
a
h
u
n
d
re
d
p
e
rc
e
n
t
th
a
t
th
e
re
w
a
s
n
o
c
h
a
n
c
e
fo
r
A
to
s
u
s
ta
in
li
fe
h
im
s
e
lf
.
A
n
d
th
a
t
w
a
s
w
h
y
I
a
s
k
e
d
to
b
e
a
t
th
e
fi
n
a
l
b
ra
in
s
te
m
te
s
t.
’’
(U
K
)
(5
8
)
A
m
b
ig
u
it
y
o
f
b
ra
in
d
e
a
th
H
e
[d
o
c
to
r]
b
ro
u
g
h
t
in
a
m
o
d
e
l
o
f
th
e
b
ra
in
w
it
h
re
m
o
v
a
b
le
b
it
s
,
w
h
ic
h
h
e
to
o
k
a
p
a
rt
a
n
d
s
h
o
w
e
d
u
s
w
h
ic
h
b
it
w
a
s
a
ff
e
c
te
d
.
T
h
a
t
re
a
ll
y
p
u
t
u
s
in
th
e
p
ic
tu
re
.
(U
K
)
(5
2
)
(6
,2
0
,2
3
,2
5
,2
7
,3
1
,
4
9
–
5
3
,5
6
,5
8
,6
2
)
T
h
e
d
o
c
to
r
s
a
id
h
e
h
a
d
g
o
t
in
to
c
o
m
a
a
n
d
h
is
s
it
u
a
ti
o
n
w
a
s
v
e
ry
s
e
ri
o
u
s
,
b
u
t
h
e
h
a
d
a
m
in
im
u
m
c
h
a
n
c
e
.
In
o
rd
e
r
to
b
e
s
u
re
h
e
re
a
ll
y
h
a
d
a
b
ra
in
d
e
a
th
th
e
y
w
o
u
ld
h
a
v
e
to
ru
n
th
re
e
k
in
d
s
o
f
e
x
a
m
s
.
A
n
d
th
e
n
h
e
s
a
id
a
g
ro
u
p
o
f
o
rg
a
n
d
o
n
a
ti
o
n
w
o
u
ld
c
o
m
e
to
ta
lk
to
u
s
.
I
a
s
k
e
d
:
b
u
t
d
id
h
e
d
ie
?
A
n
d
th
e
d
o
c
to
r
s
a
id
n
o
,
h
e
d
id
n
o
t
d
ie
.
W
e
fo
u
n
d
it
v
e
ry
u
n
u
s
u
a
l.
(B
ra
z
il
)
(2
5
)
N
o
o
n
e
e
x
p
la
in
e
d
e
x
a
c
tl
y
w
h
a
t
th
e
te
s
ts
w
e
re
o
r
w
h
a
t
th
e
y
d
id
to
a
s
c
e
rt
a
in
if
th
e
y
w
e
re
d
e
a
d
.
(U
K
)
(5
8
)
F
in
d
in
g
m
e
a
n
in
g
in
d
o
n
a
ti
o
n
S
a
v
in
g
li
fe
Y
o
u
h
e
lp
w
it
h
o
u
t
e
x
p
e
c
ti
n
g
s
o
m
e
th
in
g
in
re
tu
rn
,
w
it
h
o
u
t
a
im
in
g
to
g
a
in
s
o
m
e
th
in
g
(o
u
t
o
f
th
e
a
c
t
o
f
d
o
n
a
ti
o
n
),
w
it
h
o
u
t
w
a
n
ti
n
g
to
k
n
o
w
w
h
o
is
th
e
o
rg
a
n
re
c
ip
ie
n
t.
(1
0
-y
e
a
r-
o
ld
g
ir
l’
s
fa
th
e
r,
d
o
n
o
r)
(G
re
e
c
e
)
(4
8
)
(2
0
–
2
4
,3
0
–
3
2
,4
8
,4
9
,5
6
,5
8
,
6
2
,6
5
)
I
w
a
s
h
a
p
p
y
to
h
e
a
r
th
a
t
a
y
o
u
n
g
b
o
y
c
a
n
n
o
w
le
a
d
a
n
o
rm
a
l
li
fe
w
it
h
a
n
e
w
k
id
n
e
y
;
th
is
m
a
d
e
th
e
d
e
c
is
io
n
w
o
rt
h
w
h
il
e
.
(U
S
)
(3
2
)
L
e
tt
in
g
th
e
d
o
n
o
r
li
v
e
o
n
It
(t
h
e
d
o
n
a
ti
o
n
)
c
o
m
fo
rt
e
d
m
e
b
e
c
a
u
s
e
a
lt
h
o
u
g
h
m
y
c
h
il
d
w
a
s
b
u
ri
e
d
,
I
w
a
s
te
ll
in
g
m
y
s
e
lf
th
a
t
h
e
is
s
ti
ll
a
li
v
e
.
W
h
a
t
m
a
in
ly
h
e
lp
s
m
e
is
to
k
n
o
w
th
a
t
h
is
h
e
a
rt
is
s
ti
ll
b
e
a
ti
n
g
.
(2
-y
e
a
r-
o
ld
b
o
y
’s
m
o
th
e
r,
d
o
n
o
r)
(G
re
e
c
e
)
(2
3
)
(2
0
,2
2
,2
3
,3
0
,3
2
,
4
7
–
4
9
,5
3
,5
6
,
5
8
,6
0
,6
1
)
A
ll
p
a
rt
ic
ip
a
n
ts
in
th
is
s
tu
d
y
b
e
li
e
v
e
d
th
a
t
o
rg
a
n
d
o
n
a
ti
o
n
w
a
s
a
m
e
a
n
s
o
f
s
o
m
e
h
o
w
m
a
k
in
g
s
u
re
th
is
p
e
rs
o
n
’s
m
e
m
o
ry
c
o
n
ti
n
u
e
d
.
T
h
e
d
e
c
e
a
s
e
d
re
la
ti
v
e
’s
e
x
is
te
n
c
e
c
o
n
ti
n
u
e
s
in
s
o
m
e
fo
rm
,
a
n
d
in
th
is
s
e
n
s
e
,
h
e
lp
e
d
k
e
e
p
th
e
m
e
m
o
ry
o
f
th
e
d
o
n
o
r
a
li
v
e
.
(C
a
n
a
d
a
)
(5
3
)
P
a
rt
ic
ip
a
n
ts
h
a
d
o
th
e
r
p
ri
v
a
te
m
o
ti
v
a
ti
o
n
s
fo
r
m
a
k
in
g
d
o
n
a
ti
o
n
s
.
‘‘
It
’s
s
e
lf
is
h
re
a
ll
y
,
b
e
c
a
u
s
e
I
w
a
n
te
d
a
b
it
o
f
h
im
to
g
o
o
n
li
v
in
g
y
o
u
s
e
e
.’
’
(U
K
)
(5
8
)
F
u
lf
il
li
n
g
a
m
o
ra
l
o
b
li
g
a
ti
o
n
I
d
is
c
u
s
s
e
d
it
w
it
h
m
y
w
if
e
,
I
a
ls
o
d
is
c
u
s
s
e
d
it
w
it
h
m
y
b
e
s
t
m
a
n
a
n
d
m
a
id
o
f
h
o
n
o
r
w
h
o
w
e
re
a
t
th
e
h
o
s
p
it
a
l.
F
o
ll
o
w
in
g
th
e
s
e
d
is
c
u
s
s
io
n
s
,
I
h
a
d
n
o
o
th
e
r
c
h
o
ic
e
b
u
t
to
c
o
n
s
e
n
t
to
th
e
d
o
n
a
ti
o
n
.
(1
3
-y
e
a
r-
o
ld
b
o
y
’s
fa
th
e
r,
d
o
n
o
r)
(G
re
e
c
e
)
(4
8
)
(2
2
,3
0
,4
8
)
S
o
m
e
re
la
ti
v
e
s
fe
lt
it
w
a
s
a
s
o
c
ia
l
d
u
ty
to
d
o
n
a
te
a
n
d
w
a
s
te
fu
l
n
o
t
to
.
(U
K
)
(2
2
)
E
a
s
in
g
g
ri
e
f
I
th
in
k
it
g
iv
e
s
m
e
s
o
m
e
th
in
g
m
o
re
to
th
in
k
a
b
o
u
t
b
e
s
id
e
s
d
e
a
th
.
T
h
is
h
a
s
d
iv
e
rt
e
d
m
y
th
o
u
g
h
ts
to
s
o
m
e
th
in
g
p
o
s
it
iv
e
.
(U
S
)
(3
2
)
(2
1
–
2
3
,3
0
,3
2
,
4
8
,5
3
,5
5
,5
8
,6
0
,
6
3
,6
5
)
O
n
e
w
if
e
a
n
d
d
a
u
g
h
te
r
s
a
w
th
e
d
o
n
a
ti
o
n
a
s
a
c
a
u
s
e
fo
r
c
e
le
b
ra
ti
o
n
,
re
g
a
rd
in
g
it
a
s
a
c
o
m
fo
rt
a
n
d
‘‘
a
n
u
n
e
x
p
e
c
te
d
h
ig
h
in
a
ti
m
e
w
h
e
re
th
in
g
s
w
e
re
re
a
ll
y
ro
c
k
b
o
tt
o
m
.’
’
(U
K
)
(2
2
)
F
o
r
tw
o
p
a
re
n
ts
,
‘‘
o
rg
a
n
d
o
n
a
ti
o
n
w
a
s
th
e
o
n
ly
th
in
g
th
a
t
g
a
v
e
[t
h
e
m
]
a
b
it
o
f
p
e
a
c
e
a
n
d
c
o
m
fo
rt
’’
.
(C
a
n
a
d
a
)
(5
5
)
It
g
iv
e
s
s
o
m
e
m
e
a
n
in
g
to
a
n
o
th
e
rw
is
e
m
e
a
n
in
g
le
s
s
tr
a
g
e
d
y
.
(A
u
s
tr
a
li
a
)
(6
0
)
F
e
a
r
a
n
d
s
u
s
p
ic
io
n
F
in
a
n
c
ia
l
m
o
ti
v
a
ti
o
n
s
R
e
la
ti
v
e
s
w
h
o
w
e
re
n
o
t
c
lo
s
e
to
u
s
d
id
n
o
t
b
e
li
e
v
e
th
a
t
o
u
r
d
e
c
is
io
n
to
d
o
n
a
te
o
rg
a
n
s
w
a
s
fo
r
o
th
e
rs
’
b
e
n
e
fi
ts
.
T
h
e
m
o
n
e
y
p
ro
v
id
e
d
b
y
th
e
h
o
s
p
it
a
l
w
a
s
n
o
t
e
v
e
n
e
n
o
u
g
h
fo
r
u
s
to
p
re
p
a
re
fo
r
th
e
fu
n
e
ra
l.
S
o
m
e
o
f
o
u
r
re
la
ti
v
e
s
ju
s
t
d
id
n
o
t
u
n
d
e
rs
ta
n
d
th
is
,
a
n
d
th
is
re
a
ll
y
m
a
d
e
u
s
fe
e
l
fr
u
s
tr
a
te
d
.
(T
a
iw
a
n
)
(2
4
)
(2
4
)
U
n
w
a
n
te
d
re
s
p
o
n
s
ib
il
it
y
fo
r
d
e
a
th
H
e
m
a
y
h
a
v
e
li
v
e
d
th
ro
u
g
h
th
is
a
n
d
I’
d
b
e
th
e
o
n
e
to
k
il
l
h
im
.
Y
o
u
s
e
e
,
h
is
ti
n
y
h
e
a
rt
w
a
s
s
ti
ll
b
e
a
ti
n
g
.
(G
re
e
c
e
)
(4
8
)
(2
5
,4
8
)
O
n
ly
th
e
b
ra
in
m
a
s
s
d
ie
d
,
b
u
t
th
e
re
s
t
is
s
ti
ll
a
li
v
e
.
W
h
e
n
y
o
u
a
u
th
o
ri
z
e
th
e
d
o
n
a
ti
o
n
it
s
e
e
m
s
li
k
e
y
o
u
a
re
k
il
li
n
g
th
e
p
e
rs
o
n
.
(B
ra
z
il
)
(2
5
)
M
e
d
ic
a
l
m
is
tr
u
s
t
It
fe
e
ls
li
k
e
th
e
h
o
s
p
it
a
l
s
ta
ff
is
h
a
p
p
y
th
a
t
s
o
m
e
o
n
e
h
a
s
d
ie
d
fr
o
m
w
h
o
m
o
rg
a
n
s
c
a
n
th
e
n
b
e
h
a
rv
e
s
te
d
.
(S
o
u
th
A
fr
ic
a
)
(2
7
)
(2
0
,2
1
,2
7
–
2
9
,4
7
)
(C
o
n
ti
n
u
e
d
)
928 American Journal of Transplantation 2014; 14: 923–935
Ralph et al
T
a
b
le
3
:
C
o
n
ti
n
u
e
d
T
h
e
m
e
P
a
rt
ic
ip
a
n
ts
’
q
u
o
ta
ti
o
n
s
a
n
d
/o
r
a
u
th
o
rs
’
e
x
p
la
n
a
ti
o
n
s
C
o
n
tr
ib
u
ti
n
g
re
fe
re
n
c
e
s
D
e
c
is
io
n
a
l
c
o
n
fl
ic
t
P
re
s
s
u
re
d
d
e
c
is
io
n
m
a
k
in
g
H
o
w
c
o
u
ld
th
e
y
a
s
k
m
e
to
d
o
n
a
te
th
e
p
a
rt
s
(o
rg
a
n
s
)
o
f
m
y
c
h
il
d
w
h
e
n
I
w
a
s
s
ti
ll
in
s
u
c
h
p
a
in
,
w
h
e
n
I
w
a
s
s
ti
ll
c
ry
in
g
fo
r
h
im
?
H
o
w
c
o
u
ld
th
e
y
e
x
p
e
c
t
th
is
?
(S
o
u
th
A
fr
ic
a
)
(2
7
)
(1
2
,2
2
,2
3
,2
5
,2
7
,2
8
,
5
0
,5
2
–
5
5
,5
9
,6
0
,6
2
)
It
w
a
s
o
n
e
o
f
th
e
h
a
rd
e
s
t
m
o
m
e
n
ts
,
y
o
u
w
a
n
t
to
k
e
e
p
o
n
g
o
in
g
u
n
ti
l
th
e
e
n
d
b
u
t
y
o
u
k
n
o
w
y
o
u
c
a
n
’t
,
e
it
h
e
r
y
o
u
m
a
k
e
u
p
y
o
u
r
m
in
d
o
r
th
e
o
rg
a
n
s
a
re
lo
s
t,
y
o
u
a
re
ra
c
in
g
a
g
a
in
s
t
ti
m
e
a
n
d
th
a
t
is
th
e
h
a
rd
e
s
t
p
a
rt
.
(S
p
a
in
)
(5
4
)
(6
3
)
In
a
m
e
s
s
!
J
u
s
t
o
n
e
d
a
y
,
s
h
e
p
a
s
s
e
d
a
w
a
y
.
T
h
e
p
o
li
c
e
a
s
k
e
d
m
e
lo
ts
o
f
q
u
e
s
ti
o
n
s
.
A
t
th
a
t
ti
m
e
,
I
w
a
s
c
o
n
fu
s
e
d
.
O
n
ly
o
n
e
d
a
y
!
I
c
o
u
ld
n
o
t
d
e
s
c
ri
b
e
m
y
fe
e
li
n
g
.
O
n
ly
c
h
a
o
s
!
S
e
v
e
re
h
e
a
d
a
c
h
e
!
(H
o
n
g
K
o
n
g
)
(6
2
)
F
a
m
il
y
in
v
o
lv
e
m
e
n
t
a
n
d
c
o
n
s
e
n
s
u
s
It
w
a
s
a
d
e
c
is
io
n
th
a
t
b
e
lo
n
g
e
d
o
n
ly
to
m
e
a
n
d
to
m
y
s
p
o
u
s
e
.
O
th
e
rs
h
a
d
n
o
ri
g
h
t
to
d
e
c
id
e
fo
r
u
s
.
(7
-y
e
a
r-
o
ld
g
ir
l’
s
fa
th
e
r,
d
o
n
o
r)
(H
o
n
g
K
o
n
g
)
(6
2
)
(1
2
,2
1
,2
2
,2
4
,2
5
,
2
7
,2
9
–
3
1
,4
8
,5
1
,
5
3
,5
4
,5
8
,6
0
–
6
2
)
O
rg
a
n
d
o
n
a
ti
o
n
is
s
u
c
h
a
n
im
p
o
rt
a
n
t
is
s
u
e
th
a
t
a
s
a
fa
th
e
r
I
n
e
e
d
to
g
e
t
a
c
o
n
s
e
n
s
u
s
fr
o
m
fa
m
il
y
m
e
m
b
e
rs
s
u
c
h
a
s
m
y
w
if
e
,
p
a
re
n
ts
,
a
n
d
s
o
m
e
c
lo
s
e
re
la
ti
v
e
s
.
(T
a
iw
a
n
)
(3
1
)
M
y
h
u
s
b
a
n
d
fe
lt
th
a
t
d
o
n
a
ti
o
n
w
a
s
fi
n
e
.
H
o
w
e
v
e
r,
m
y
m
o
th
e
r-
in
-l
a
w
lo
s
t
h
e
r
te
m
p
e
r.
E
v
e
n
I
d
id
n
’t
li
k
e
h
e
r
o
p
in
io
n
,
b
u
t
I
s
h
o
u
ld
re
s
p
e
c
t
h
e
r.
..
W
h
o
le
fa
m
il
y
p
e
rs
u
a
d
e
d
h
e
r
to
h
e
lp
th
e
o
th
e
r.
A
ft
e
r
o
b
ta
in
in
g
h
e
r
p
e
rm
is
s
io
n
,
I
m
a
d
e
u
p
m
y
m
in
d
to
d
o
n
a
te
.
(H
o
n
g
K
o
n
g
)
(6
2
)
In
te
rn
a
l
d
is
s
o
n
a
n
c
e
It
w
a
s
u
n
b
e
li
e
v
a
b
le
.
I
s
e
e
m
y
h
u
s
b
a
n
d
ly
in
g
th
e
re
,
w
e
ll
s
h
a
v
e
d
,
s
u
n
-t
a
n
n
e
d
a
s
h
e
a
lw
a
y
s
is
,
b
re
a
th
in
g
a
n
d
b
re
a
th
in
g
.
It
w
a
s
li
k
e
h
e
w
a
s
s
ti
ll
a
li
v
e
!
(S
w
it
z
e
rl
a
n
d
)
(5
1
)
(1
2
,2
0
,2
5
,2
7
,2
8
,4
9
,
5
1
–
5
3
,5
5
,5
8
–
6
0
,
6
2
,6
3
)
A
d
h
e
ri
n
g
to
re
li
g
io
u
s
b
e
li
e
fs
I’
m
B
u
d
d
h
is
t
a
n
d
I
th
in
k
b
y
d
o
n
a
ti
n
g
h
e
r
o
rg
a
n
s
,
h
e
r
lo
v
e
fo
r
o
th
e
rs
c
a
n
b
e
c
o
n
ti
n
u
e
d
a
n
d
I
c
a
n
a
c
c
u
m
u
la
te
s
o
m
e
c
re
d
it
s
fo
r
h
e
r
to
w
in
a
b
e
tt
e
r
a
ft
e
rl
if
e
.
H
o
w
e
v
e
r,
I
c
a
n
’t
d
o
n
a
te
h
e
r
s
k
in
,
o
th
e
rw
is
e
,
h
e
r
a
ft
e
rl
if
e
w
o
u
ld
p
o
s
s
ib
ly
b
e
h
u
rt
.
I
m
e
a
n
s
h
e
m
ig
h
t
b
e
c
o
m
e
h
a
n
d
ic
a
p
p
e
d
in
th
e
n
e
x
t
h
u
m
a
n
li
fe
.
(T
a
iw
a
n
)
(3
1
)
(2
2
,2
4
,2
7
,3
1
,4
8
,
5
1
,5
4
,6
2
)
V
u
ln
e
ra
b
il
it
y
V
a
lu
in
g
s
e
n
s
it
iv
it
y
a
n
d
ra
p
p
o
rt
T
h
e
tr
a
n
s
p
la
n
t
c
o
o
rd
in
a
to
r
d
id
n
o
t
a
p
p
ro
a
c
h
m
e
in
a
h
u
rr
y
.
A
ll
th
e
w
a
y
,
s
h
e
w
a
s
c
o
n
c
e
rn
e
d
a
n
d
c
o
m
fo
rt
e
d
m
e
.
B
o
th
d
o
c
to
rs
a
n
d
n
u
rs
e
s
w
e
re
n
ic
e
.
T
h
e
y
c
re
a
te
d
a
g
o
o
d
a
tm
o
s
p
h
e
re
fo
r
u
s
to
c
o
n
s
id
e
r
d
o
n
a
ti
o
n
.
(H
o
n
g
K
o
n
g
)
(6
2
)
(6
,1
2
,2
2
,2
3
,2
5
,3
1
,3
–
2
,4
7
,4
8
,5
0
–
5
6
,5
9
–
6
1
,6
4
)
P
a
rt
ic
ip
a
n
ts
in
b
o
th
g
ro
u
p
s
[d
o
n
o
r
a
n
d
n
o
n
d
o
n
o
r]
c
o
m
m
e
n
te
d
o
n
th
e
in
s
e
n
s
it
iv
e
m
a
n
n
e
r
in
w
h
ic
h
in
fo
rm
a
ti
o
n
o
ft
e
n
w
a
s
c
o
n
v
e
y
e
d
to
th
e
m
.
‘‘
It
’s
n
o
t
w
h
a
t
y
o
u
h
a
v
e
to
s
a
y
.
It
is
h
o
w
y
o
u
s
a
y
it
.’
’
(U
S
)
(5
0
)
O
v
e
rw
h
e
lm
e
d
a
n
d
d
is
e
m
p
o
w
e
re
d
M
a
y
b
e
a
li
tt
le
b
it
o
f
in
fo
rm
a
ti
o
n
w
o
u
ld
h
a
v
e
g
o
n
e
a
m
il
e
.
(U
S
)
(5
0
)
(6
,1
2
,2
2
,2
3
,2
5
,2
8
–
3
1
,5
0
–
5
6
,5
8
–
6
1
,6
3
,6
4
)
F
a
m
il
y
m
e
m
b
e
rs
s
ta
te
d
th
a
t
th
e
y
fe
lt
‘‘
is
o
la
te
d
,’
’
‘‘
lo
s
t’
’
‘‘
in
li
m
b
o
,’
’
‘‘
d
is
a
p
p
o
in
te
d
b
e
c
a
u
s
e
th
e
y
le
ft
m
e
u
p
in
th
e
a
ir
,’
’
th
a
t
th
e
y
w
e
re
n
’t
k
e
p
t
u
p
to
d
a
te
,’
’
o
r
th
a
t
it
‘‘
s
e
e
m
e
d
to
ta
k
e
fo
re
v
e
r’
’
u
n
ti
l
th
e
y
fo
u
n
d
o
u
t
a
b
o
u
t
th
e
c
o
n
d
it
io
n
o
f
th
e
ir
re
la
ti
v
e
.
(A
u
s
tr
a
li
a
)
(6
1
)
H
e
h
a
d
tw
o
h
e
a
rt
a
tt
a
c
k
s
.
T
h
e
d
o
c
to
r
e
x
p
la
in
e
d
e
v
e
ry
th
in
g
,
b
u
t
h
e
d
id
n
’t
m
e
n
ti
o
n
h
e
w
a
s
in
c
o
m
a
,
a
n
d
w
e
th
o
u
g
h
t
h
e
w
a
s
g
e
tt
in
g
b
e
tt
e
r.
(B
ra
z
il
)
(2
5
)
R
e
s
p
e
c
ti
n
g
th
e
d
o
n
o
r
H
o
n
o
ri
n
g
th
e
d
o
n
o
r’
s
w
is
h
e
s
M
y
d
a
u
g
h
te
r
a
lw
a
y
s
li
k
e
d
to
ta
k
e
c
a
re
o
f
o
th
e
rs
..
.
c
la
s
s
m
a
te
s
,
p
e
ts
.
I
th
in
k
s
h
e
w
o
u
ld
a
g
re
e
w
it
h
o
u
r
d
e
c
is
io
n
a
n
d
in
th
is
w
a
y
c
o
n
ti
n
u
e
to
p
a
s
s
io
n
a
te
ly
h
e
lp
o
th
e
rs
.
(1
6
-y
e
a
r-
o
ld
g
ir
l’
s
m
o
th
e
r,
d
o
n
o
r)
(G
re
e
c
e
)
(4
8
)
(6
,2
1
,2
2
,2
5
,
2
9
–
3
1
,4
8
,5
1
–
5
6
,
5
8
,5
9
,6
1
,6
3
,6
5
)
M
y
h
u
s
b
a
n
d
h
a
d
a
li
v
in
g
w
il
l
th
a
t
in
th
e
c
a
s
e
o
f
h
is
d
e
a
th
h
e
w
a
n
te
d
to
d
o
n
a
te
h
is
b
o
d
y
..
.
W
e
th
e
n
a
g
re
e
to
d
o
n
a
te
h
is
o
rg
a
n
s
a
c
c
o
rd
in
g
to
h
is
w
il
l
to
h
o
n
o
u
r
h
im
.
(T
a
iw
a
n
)
(3
1
)
K
n
o
w
in
g
th
e
w
is
h
e
s
o
f
th
e
d
e
c
e
a
s
e
d
m
a
d
e
th
e
p
ro
c
e
s
s
v
e
ry
s
im
p
le
.
(A
u
s
tr
a
li
a
)
(6
5
)
P
re
s
e
rv
in
g
b
o
d
y
in
te
g
ri
ty
I
k
n
o
w
it
’s
n
o
t
b
u
t
it
’s
to
o
m
u
c
h
li
k
e
a
b
u
tc
h
e
r’
s
s
h
o
p
to
m
e
.
L
e
t’
s
h
a
v
e
h
a
lf
p
o
u
n
d
o
f
h
e
a
rt
,
th
re
e
q
u
a
rt
e
rs
o
f
a
p
o
u
n
d
o
f
li
v
e
r .
(U
K
)
(4
9
)
(2
1
,2
2
,2
4
,3
0
,3
1
,
4
8
–
5
1
,5
4
,5
6
,
5
8
–
6
0
,6
2
,6
3
)
H
e
w
a
s
m
y
h
u
s
b
a
n
d
.
Y
o
u
s
h
o
u
ld
p
re
s
e
rv
e
h
is
a
p
p
e
a
ra
n
c
e
a
ft
e
r
d
o
n
a
ti
o
n
.
H
is
b
o
d
y
s
h
o
u
ld
b
e
n
e
a
t
a
n
d
ti
d
y
.
I
re
q
u
e
s
te
d
to
c
h
e
c
k
h
is
b
o
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Family Views on Deceased Donation
929American Journal of Transplantation 2014; 14: 923–935
poorly timed; for example, one participant reported that she
was approached about consenting to donation prior to
being informed about her husband’s death (28). Some felt
they needed more time to process the information both
about the death and about the donation before making a
decision.
Family involvement and consensus
For parents, the responsibility of the donation decision was
viewed as belonging specifically to them. Some mothers
strongly advocated that they should make the decision
about donating their child’s organs. Mothers believed that
the close bond with their child meant they would know
what their child would want. While agreement between
parents was the most important, consensus among the
rest of the family was also valued.
Conflicting views and tension within the family caused
some participants to become anxious. Family members
who believed that they were either outnumbered or
overpowered by other family members felt pressure to
conform. This led to distress and resentment toward their
relatives. In three studies, women felt more actively
involved in the decision process, and wielded a stronger
influence on the decision than other members (20,29,30).
Internal dissonance
Some family members described an internal conflict
between the appearance of their loved one and the
confirmation of their death. Their deceased relative
physically appeared ‘‘alive’’ and normal, particularly if
they did not have visible external injuries. This created
internal tension, as participants were hopeful their relative
would survive yet struggled with shock and distress of
having to accept death.
Adhering to religious beliefs
Some families were uncertain about whether their religion
espoused donation and therefore felt conflicted and
uncertain about donation. Some refused to consent if
they believed that donation would prevent reincarnation,
hinder prosperity of the family in the mortal world, disrupt
the afterlife or prevent successful ‘‘re-birth’’ in the future.
However, others believed the deceased donor would be
rewarded in the afterlife for fulfilling the religious teachings
of loving and helping others as well as completing one’s
specific mission on earth.
Vulnerability
Valuing sensitivity and rapport
Participants valued emotional support as well as sensitive
and competent care given to their relative’s body. They
appreciated patience, sincerity and compassion from
medical staff, which encouraged their decision to give
consent. Others felt that some staff appeared ‘‘cold,’’T
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Ralph et al
930 American Journal of Transplantation 2014; 14: 923–935
‘‘distant’’ and spoke in an insensitive manner and tone
about their relative and therefore believed that staff treated
their deceased relative as just ‘‘an object’’ for organ
procurement.
Overwhelmed and disempowered
Being unable to access medical staff or see their relative
caused frustration. Some participants described having no
‘‘rights,’’ for example, not being allowed adequate time
with their relative. They felt uninformed about their
relative’s condition and still held hopes that their relative
was improving; then were intensely disappointed and
refused to give consent when they found out, only later, the
‘‘shocking’’ news that their relative could not be revived.
Respecting the Donor
Honoring the donor’s wishes
If participants knew their relative’s decision about donation,
they felt more confident about making a choice about
donation. However, those who were unaware of their
relative’s decision or were themselves opposed to it felt
hesitant and indecisive. Some believed that their relative
was a kind, compassionate and generous individual who
would have wanted to donate. One family consented to
donation despite knowing their relative did not want to be a
donor since it would benefit people in need of a transplant
and was therefore justified (20).
Preserving body integrity
Some participants feared bodily mutilation, ‘‘butchering’’
and desecration of their relative, which they believed would
cause their relative further pain, suffering and loss of peace
and protection in their afterlife. In particular, some families
felt that the eyes should not be removed as they are the
‘‘window to the soul’’ or their relative may not be able to see
God after death. Many also placed special meaning on the
heart, which they believed was the ‘‘centre of the person’’
or the ‘‘seat of love.’’ Some did not want to consent to
donation as they were concerned about their relative’s
appearance and wanted the body to remain ‘‘as pretty as
possible’’ (31).
Needing Closure
Appreciating acknowledgment
Participants who received an anonymous thank-you letter
from the transplant recipient felt comforted by knowing that
their decision was appreciated. This acknowledgment
provided relief and reinforced their decision to consent,
and instilled more ‘‘meaning’’ to the donation. Some
participants who did not feel acknowledged expressed
dissatisfaction and bitterness about the organ donation
process and felt unvalued by the recipients of their
relative’s organs.
Knowing recipient outcome
Learning that the transplant was successful helped to
validate the participants’ decision to consent to donation.
Families desired information about the recipients as they
sought ‘‘confirmation of the value of donation, the need to
extend the kinship relationship’’ (24) or were merely
curious. One study found that Taiwanese Buddhist families
and Confucian ideologists believed they would regard the
Needing closure
• Appreciating acknowledgement
• Knowing recipient outcome
• Unresolved decisional uncertainty
• Feeling dismissed
Finding meaning in donation
• Saving life
• Letting the donor live on
• Fulfilling a moral obligation
• Easing grief
Decisional conflict
• Adhering to religious beliefs
• Family involvement and consensus
• Pressured decision-making
• Internal dissonance
Fear and suspicion
• Medical mistrust
• Financial motivation
• Unwanted responsibility for death
Respecting the donor
• Honoring the donor’s wishes
• Preserving body integrity
Comprehension of unexpected death
• Accepting finality of life
• Ambiguity of brain death
Vulnerability
• Valuing sensitivity and rapport
• Overwhelmed and disempowered
Key: Positive perceptions of deceased donation
Negative perceptions of deceased donation
Figure 1: Thematic schema. The positive perceptions of deceased donation delineated in the thematic schema mostly reflect data from
families who consented, while the negative perceptions mostly reflects data from families who did not consent to donation.
Family Views on Deceased Donation
931American Journal of Transplantation 2014; 14: 923–935
recipients as ‘‘members of their extended family’’ (24)
while Christian donor families wanted to know about the
recipient’s health and quality of life. Some families
attempted to locate the recipients of their relative’s organs
when the aforementioned information was not made
available to them. On the other hand, some did not want
to risk facing disappointment if they found out that the
transplant had failed or was a waste (32).
Unresolved decisional uncertainty
After consenting to donation, some remained unsure about
whether they had made the ‘‘right’’ decision and described
being in an emotional limbo. Some held doubts about
whether their relative had ‘‘died’’ and continued to feel
upset and confused about the organ donation process.
Feeling dismissed
Many participants felt that there was a lack of support after
the donation. Families expressed the need for specific
counseling to address donation-related grief. Some partic-
ipants felt empty, vulnerable, isolated or lonely after the
donation, and felt ‘‘used’’ in order to provide their relative’s
organs. However, others appreciated follow-up calls from
medical personnel, as they felt comforted knowing that
someone else still cared.
Discussion
Family refusal to give consent contributes to the low rates
of deceased organ donation observed in most countries. In
our review, the positive perspective of the lifesaving act of
donation was also perceived as an opportunity for the donor
to ‘‘live on,’’ and provided meaning and a sense of comfort
to families. The negative aspects for the family members
included coping with the unexpected death of their relative
while trying to comprehend the meaning of brain death and
make emotionally charged and time-pressured decisions
about donation in the context of grief and bereavement.
Family members valued support and acknowledgment
from clinicians, while others felt vulnerable, disempowered
and excluded from decision making. Some believed that
their relative’s body would be carelessly dismembered.
Those who received acknowledgment or were told about
the recipient’s positive transplant outcomes after consent-
ing to donation could gain a sense of closure, but lack of
bereavement support and follow-up meant some families
remained internally conflicted and uncertain about whether
they had made the right decision to donate. The key insights
and implications are summarized in Table S3.
Our review draws attention to differences in family
perspectives on deceased organ donation across coun-
tries, cultural or healthcare environments. Across most
countries, there was skepticism about whether optimal
care would be provided for potential donors, though
mistrust in the organ allocation system was specifically
reported by African American families in the United States
(21,26). This perception may be partly driven by the striking
racial disparities in access to transplantation (33–35). In
South Africa, some donor families experienced discrimi-
nation, a sense of injustice, and felt they were merely used
to supply organs (27). Of note, up until 2010, deceased
donor kidneys in the Johannesburg region were allocated
evenly between the state and private centers (36). In most
Western countries, financial compensation for deceased
organ donation is deemed ethically unacceptable (37).
However, in Taiwan, where defraying donor medical costs
and variable hospital-based financial reward occurs, there
was uncertainty with families reporting that others were
suspicious about how that money, if intended for funeral
expenses, was actually spent (24).
Our systematic review aimed to generate a comprehensive
conceptual understanding of families’ perspectives on
deceased organ donation, rather than to determine
frequency or the strength of associations among variables
and outcomes; therefore, we synthesized qualitative
studies only. Qualitative studies typically use open-ended
questions to elicit detailed narrative data to explain people’s
beliefs, attitudes and values that underpin decision making
and behaviors, which may not be apparent when surveyed
with prespecified variables in quantitative research. Of
note, our findings complement previous quantitative
studies on family’s perspectives on deceased organ
donation, which have found that family members are
more likely to consent to donation if they know and value
their deceased relative’s decision to be an organ donor (16),
are provided with informational support about organ
donation and brain death and have complete and accurate
knowledge of brain death (13,16). However, families are
less likely to consent if they are not given sufficient time to
make decisions, distrust medical staff, have religious fears
related to donation and have communication difficulties
with staff (15,16,38,39). A systematic review of observa-
tional studies and audits of modifiable factors associated
with consent to donation identified lack of understanding of
brain death, poor timing of the request and poor approach
and skill of the individual making the request as barriers to
consent (13). The thematic schema we developed extends
and explains findings from previous studies by depicting the
complex interplay of multiple and sometimes conflicting
issues that family members, often in a state of devastation
and vulnerability, consider in their decision to donate, which
include respecting the donor, finding meaning in donation,
fear and suspicion, family and religious values and their
altruistic beliefs.
The importance of the healthcare team’s communication
and rapport with the family in the request for donation has
been well recognized in quantitative studies (10,39,40). As
found in our review, families valued sensitivity, rapport and
involvement in decision making. Our findings highlight the
decisional conflict in family members, which is shaped by
their religious beliefs, family disagreement, urgency of the
Ralph et al
932 American Journal of Transplantation 2014; 14: 923–935
decision and internal dissonance. Gaining a sense of
closure about the donation decision is important. Families
who value finding positive meaning in donation appreciate
receiving acknowledgment and knowing the recipient’s
transplant outcomes. However, uncertainty about their
decision persists in some family members after they have
consented to donation.
Our systematic review methods included a comprehensive
search and an independent assessment of study reporting
using a standard framework (18). Software was used to
code the data, thus enabling an auditable development of
themes. A new comprehensive conceptual framework was
developed to provide insight on the diversity of family
perspectives toward deceased donation and to highlight
the conceptual links among themes. However, the review
has some limitations. Few participants from non-English
backgrounds and ethnic minority groups were included in
the primary studies as non-English articles were excluded;
therefore, the transferability of the findings to these
populations may be limited. Quality of reporting study
methods and findings in conference abstracts of qualitative
research has been found to be associated with the
likelihood of publication (41); as such, publication bias is
possible as we only included papers published in peer-
reviewed journals. Comprehensiveness of reporting was
variable across the studies, which highlights the need to
improve study reporting. Also, we acknowledge the
inherent social desirability bias considering that deceased
donation may be a sensitive and difficult topic for
participants to discuss.
The studies included in the review did not differentiate
between family experiences of donation after brain death
and donation after cardiac death. In some countries,
donation after cardiac death has been used as a strategy
to increase transplantation rates (42,43); therefore, we
suggest further research focused on family perspectives on
donation after cardiac death is needed.
Family members need information and emotional support
when making decisions about organ donation. In many
centers, the intensive care team and donor coordinator
provide information and support to the donor family (44–
46), although their responsibilities can vary across
institutions. Giving accurate and timely information to
family members about their relative’s medical condition,
involving family members in decision making and ensur-
ing that families comprehend their explanation of brain
death may improve satisfaction in the donation process.
To address medical mistrust and suspicion, each family
should have access to a donor coordinator or a healthcare
provider independent of the transplant team to advocate
for their needs, allay fears about body mutilation and
‘‘butchering’’ of the donor’s body, identify and respond to
anxieties and uncertainties, clarify organ allocation
processes and facilitate access to bereavement counsel-
ing (46).
After the transplant surgery, family members can remain
conflicted about consenting to organ donation. Usually, the
donor family is informed about the transplant recipient’s
progress or outcome and provided with the contact details
of the donor coordinator. However, our findings suggest
that proactive follow-up to explicitly address and resolve
internal decisional conflicts and uncertainties about their
decision may promote a sense of closure, confidence and
satisfaction with the donation process among donor
families. This may involve offering ongoing support by
the donor coordinator via follow-up phone calls for a time
period that is agreed upon with the family, with personal
meetings offered to families identified as vulnerable (e.g.
those with less social support) as outlined in the Donor
Family Care Policy published by the NHS UK Transplant
(47).
Trained donation practitioners can increase family consent
rates (48). Specialized training for health professionals on
communicating with potential donor families would need to
cover the cultural, societal and religious context that might
influence the family experiences and decision making.
Understanding culturally diverse family structures and
values are important competencies for transplant co-
coordinators and can aid in minimizing family conflict (29).
As the decision to donate often involves multiple family
members, we recommend a family-centered approach that
considers and supports all relevant family members in the
decision making and accounts for the family dynamics.
Research has focused on the donation process and consent
rates but there is a relative lack of information on effective
follow-up for donor families. While policies and guidelines
on the care of donor families are comprehensive and
address follow-up care and bereavement support in the
context of organ donation, there is little research evidence
about implementing these recommendations and how it
impacts on families. For example, one study found that a
hospital bereavement intervention program for parents
after traumatic childhood death can have a positive impact
on the grieving process (49). We suggest that more health
services research could be conducted to evaluate, for
example, specialized counseling and support groups for
families who have consented to donation. Further research
to identify risk factors for decisional conflict and poor
psychological outcomes postdonation and to inform
strategies targeted at supporting vulnerable families is
also recommended.
The ‘‘lifesaving’’ act of donation can have a positive effect
on grieving families. However, they also report an
overwhelming sense of uncertainty about death and the
donation process, vulnerability, an acute emotional and
cognitive burden and predecisional and postdecisional
dissonance. Raising awareness of the deceased donation
process, as well as bereavement support strategies, is
needed to help families comprehend and accept death in
the context of donation, address anxieties about organ
Family Views on Deceased Donation
933American Journal of Transplantation 2014; 14: 923–935
procurement, foster trust in the donation process, resolve
insecurities and tensions in their decision making and gain a
sense of closure after donation. This can potentially
improve family experiences and decision making in organ
donation.
Acknowledgments
This project is supported by the Australian Research Council (ARC) Grant
DE120101710.
Author Contributions
AT, JRC, JG, JCC, PB, KH, MI and BS contributed to the
study concept and design. AR and AT collected the data. All
authors drafted the manuscript and reviewed the article
critically for important intellectual content.
Access to Data
AR had full access to all of the data in the study and takes
responsibility for the integrity of the data and the accuracy
of data analysis.
Disclosure
The authors of this manuscript have no conflicts of interest
to disclose as described by the American Journal of
Transplantation.
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Supporting Information
Additional Supporting Information may be found in the
online version of this article.
Figure S1: Search results.
Table S1: Search strategies.
Table S2: Comprehensiveness of reporting in the included
studies.
Table S3: Key insights and implications.
Family Views on Deceased Donation
935American Journal of Transplantation 2014; 14: 923–935
http://www.sats.org.za/Guidelines.asp
http://www.sats.org.za/Guidelines.asp
http://www.organdonation.nhs.uk/about_transplants/donor_care/donor_family_care_policy/donor_family_care_policy_version2_23032005
http://www.organdonation.nhs.uk/about_transplants/donor_care/donor_family_care_policy/donor_family_care_policy_version2_23032005
http://www.organdonation.nhs.uk/about_transplants/donor_care/donor_family_care_policy/donor_family_care_policy_version2_23032005
Family Perspectives on Deceased Organ Donation: Thematic Synthesis of Qualitative Studies
1.
Claim: What was the article’s main point? What’s the thesis?
The article’s main point is that one of the major barriers to accomplish the needs for organ transplantation in so many countries, including United States, UK and Australia, is that a consent by the family must be signed. A major barrier to meeting the needs for organ transplantation is family refusal to give consent.
2. Grounds: What kinds of evidence did the author use to support his/her argument? Provide an example.
Qualitative studies were used to support the argument, involving family members whose relatives had died. The author used a table to collect data using semi-structured interviews. In Hong Kong they used the Tong et al study. A convenience sampling strategy allowed to get information from the partners, parents, siblings and childs of the deceases.
3. Warrants: Did the author(s) successfully connect the evidence to the main point? How so?
Yes, the author was able to connect the evidence to the main point. He used a table with number of participants, method used, country, participant’s relationship, and consented or not consented. Another table included seven major perspective themes which were divided into sub themes.
4. Backing: How credible were the sources the author(s) applied? How does credulity affect your overall response?
The sources provided by the author were very credible. He listed percentages in the different countries and also the article is supported by the Australian Research Council (ARC) Grant DE120101710, which made made it more credible to me.
5. Qualifiers: I noticed absolutes like all and many when talking about the studies
6. Rebuttal: Most of the studies were based on brain death. My opinion was unchanged. I work in an Neuro ICU unit and I face that type of conflicts. As protocol we should notify the organ donation institution when the patient has a Glasgow of 5 or less.
References:
Dejong, W. (1998 January 01) Requesting Organ donation: an Interview study of donor and nondonor family
URL retrieved from
https://aacnjournals.org/ajcconline/article-abstract/7/1/13/6276/Requesting-organ-donation-an-interview-study-of?redirectedFrom=fulltext
Position Paper Grading Rubric – 125 pts (1)
| Position Paper Grading Rubric – 125 pts (1) | ||||
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Criteria |
Ratings |
Pts |
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This criterion is linked to a Learning OutcomeLength |
5.0 pts |
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This criterion is linked to a Learning OutcomePoint Analysis |
30.0 pts |
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This criterion is linked to a Learning OutcomeSupport |
30.0 pts The writing supports claims with several detailed and persuasive examples. 25.5 pts The writing supports claims with examples, but additional analysis or examples could strengthen the argument. 22.5 pts The writing supports claims with examples, but the examples are not well-developed or examined. Additional examples and analysis are needed to make the argument more persuasive. 18.0 pts The central idea is not well-supported by claims and/or examples. 0.0 pts No effort |
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This criterion is linked to a Learning OutcomeOrganization |
25.0 pts |
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This criterion is linked to a Learning OutcomeWriting: Mechanics & Usage |
10.0 pts |
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This criterion is linked to a Learning OutcomeClarity & Flow |
10.0 pts The writing contains strong word choice that clarifies ideas and masterful sentence variety aids with the flow of ideas. 8.5 pts The writing contains varied word choice and sentence structures that clarify ideas and aid with the flow of ideas. 7.5 pts The writing contains word choice and sentence structures that can be revised for better clarification of ideas and flow of ideas. 6.0 pts The writing contains wording and sentence structures that are awkward and/or unclear, impeding the clarity and flow of ideas. 0.0 pts No effort |
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This criterion is linked to a Learning OutcomeVoice |
5.0 pts The writing maintains third-person point of view/objective voice throughout the entire text. 4.25 pts The writing maintains third-person point of view/objective voice throughout much of the text. 3.75 pts The writing has some deviation from third-person point of view/objective voice that needs to be revised so as not to sound biased or patronizing. 3.0 pts The writing deviates significantly from third-person point of view/objective voice that needs to be revised so as not to sound biased or patronizing. 0.0 pts No effort |
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This criterion is linked to a Learning OutcomeAPA Format |
10.0 pts All sources are properly integrated and cited in the text and references page demonstrating a mastery of integrating resources and APA format. 8.5 pts Most sources are integrated and cited in the text and references page. Some minor errors may exist in integration and/or citation, but it does not interfere with understanding the source of the information. 7.5 pts Most sources are integrated and cited in the text and references page. Some errors may exist in integration and/or citation that need to be addressed to clarify the source of information. 6.0 pts Sources are not properly integrated/cited in the text/references page. Formatting contains several errors that suggest a lack of understanding of the integration of resources and APA format. 0.0 pts No effort |
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Total Points: 125.0 |
TYPE SHORT TITLE IN ALL CAPS 2
Title in Upper and Lower Case
Your Name
Chamberlain College of Nursing
Course Number: Course Name
Term Month and Year
Running head: TYPE SHORT TITLE IN ALL CAPS 1
TYPE SHORT TITLE IN ALL CAPS 3
Title of your Paper in Upper and Lower Case (Centered, not Bold)
Type your introduction here and remove the instructions.. The introduction should begin with an attention grabber and end with your working thesis statement. Remember to employ an objective tone by applying only 3rd person point of view (no 1st: I, me, my, we, our, us, mine) or 2nd: you, your person point of view).
Context
Begin to type the body of your paper here. Use as many paragraphs as needed to cover the content appropriately. As noted in the Lecture’s outline, the context section should include potential qualifiers, and definitions. It is essentially background information that provides your audience with the context needed to understand your claim.
1st Pro-Point
Begin with a topic sentence written in your own words that presents your grounds. Next, apply the evidence/warrant. Signal phrases are highly recommended to introduce new sources (ex: According to Dr. John Smith, head physician at the Mayo Clinic…). Cite your sources in APA format via parenthetical citations. Follow through with a few sentences examining the evidence and connecting it back to your main point. Strive for a minimum of 5 developed sentences in a college level paragraph. Remember to refer back to the outline in our Week 2 Lesson if you need to review the structure of the paper.
Repeat this process for your 2nd and 3rd Pro-Points, dedicating a paragraph to each.
Conclusion
Papers should end with a conclusion. Unpack your thesis (do not copy/paste it) and apply a concluding technique. It should be concise and contain no new detail. No matter how much space remains on the page, the references always start on a separate page.
References (centered, not bold)
Type your references in alphabetical order here using hanging indents. See your APA Manual and the resources in your APA folder in Course Resources for reference formatting.
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Formatting
Title Page
Citation
Outline
