Organ Donation

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. Irving1,2, B. Sutanto1,2 and A. Tong1,2

1Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, NSW, Australia 2Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia 3Centre for Transplant and Renal Research, Westmead Hospital, NSW, Westmead, Australia 4Centre for Values, Ethics and Law in Medicine, The University of Sydney, Sydney, NSW, Australia 5Paediatrics and Child Health, The Children’s at Hospital, Westmead, NSW, Australia 6Psycho-Oncology Co-Operative Research Group, The University of Sydney, Sydney, NSW, Australia 7Centre 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); findingmeaning 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- standdeath in the context of donation, address anxieties about organ procurement, foster trust in the donation process, resolve insecurities in decisionmaking andgain 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 likelywhen

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 themeaning of brain death

andmodifiable 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 searcheswere 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. Thismethodology 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

howbrain injurywasdefinedandmedically confirmed.Some

couldnotcomprehend the informationand felt overwhelmed

by the technical language; or reported receiving discrepant

information (e.g. about timeofdeath) fromdifferent sources,

which added to their confusion and frustration. Visual aids or

viewingbrain stemtestinghelped themtobetter understand

brain death.

Ralph et al

924 American Journal of Transplantation 2014; 14: 923–935

T a b le

1 : C h a ra c te ri s ti c s o f th e in c lu d e d s tu d ie s

S tu d y

N o �

R e s p o n s e

ra te

(% )

C o u n tr y

S a m p lin g

s tr a te g y

P a rt ic ip a n t

re la ti o n s h ip

C o n s e n –

te d to

d o n a ti o n

N u m b e r

c o n s e n te d

to d o n a ti o n

(Y :N )

T im

e fr a m e

(m o n th s )

D a ta

c o lle c ti o n

M e th o d o lo g ic a l

fr a m e w o rk

A n a ly s is

T o p ic

Y N

B a rt u c c i a n d S e lle r

(5 0 )

1 9

8 3

U n it e d S ta te s

C o n v e n ie n c e

P a re n t o f c h ild

– –

– –

O p e n -t e x t

s u rv e y

re s p o n s e

– C o n te n t

a n a ly s is

R e s p o n s e s to

a c k n o w le d g m e n t

B a rt u c c i (3 2 )

3 4

8 3

U n it e d S ta te s

C o n v e n ie n c e

P a re n t o f c h ild

– –

– –

O p e n -t e x t

s u rv e y

re s p o n s e

– C o n te n t

a n a ly s is

E x p e ri e n c e s o f o rg a n

d o n a ti o n

B e lla li a n d P a p a d a to u

(2 3 )

2 2

6 2

G re e c e

T h e o re ti c a l

P a re n t o f c h ild

� �

1 1 :1 1

8 – 8 0

In te rv ie w

G ro u n d e d th e o ry

G ro u n d e d

th e o ry

G ri e f p ro c e s s

B e lla li a n d P a p a d a to u

(5 1 )

2 2

6 2

G re e c e

T h e o re ti c a l

P a re n t o f c h ild

� �

1 1 :1 1

8 – 8 0

In te rv ie w

G ro u n d e d th e o ry

G ro u n d e d

th e o ry

D e c is io n m a k in g

C a re y a n d F o rb e s (2 2 )

1 2

– U n it e d K in g d o m

– P a rt n e r, c h ild

� –

1 2 :0

4 – 2

In te rv ie w

Q u a lit a ti v e

F ra m e w o rk

a n a ly s is

D o n a ti o n o f c o rn e a s

D o d d -M

c C u e e t a l

(2 9 )

1 5

8 U n it e d S ta te s

C o m p re h e n s iv e

W o m e n

� –

1 5 :0

6 – 6 0

F o c u s

g ro u p s

Q u a lit a ti v e

T h e m a ti c

a n a ly s is

R o le

o f w o m e n in

d o n a ti o n p ro c e s s

D o e ri n g (3 0 )

1 7

– C a n a d a

R a n d o m ,

p u rp o s iv e

P a rt n e r, p a re n t, c h ild ,

s ib lin g

� –

1 7 :0

3 – 2

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s o c ia l e x c h a n g e

th e o ry

C o n te n t

a n a ly s is

E x p e ri e n c e s o f

c o n s e n ti n g to

e y e

d o n a ti o n

H a d d o w

(2 8 )

2 3

2 4

U n it e d K in g d o m

P u rp o s iv e

P a rt n e r, c h ild , a u n t,

c h ild , s ib lin g

� �

1 9 :3

– In te rv ie w

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a n a ly s is

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p ro v id e rs

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(5 2 )

1 9

3 3

U n it e d K in g d o m

– P a rt n e r, c h ild , a u n t,

c h ild , s ib lin g

� –

1 9 :0

– In te rv ie w

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e n t,

o rg a n tr a n s p la n t

J a c o b y e t a l (5 3 )

1 6

1 6

U n it e d S ta te s

C o m p re h e n s iv e

– �

� 1 1 :5

> 9

F o c u s

g ro u p s

Q u a lit a ti v e

T h e m a ti c

a n a ly s is

S u p p o rt n e e d s

K e s s e lr in g e t a l (5 4 )

4 0

– S w it ze rl a n d

P u rp o s iv e

P a rt n e r, p a re n t, c h ild ,

s ib lin g , g ra n d m o th e r

� �

3 1 :9

5 – 7

In te rv ie w

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G ro u n d e d

th e o ry

T ra u m a , o rg a n

d o n a ti o n , IC U

K o m e ts i a n d L o u w

(2 7 )

– –

S o u th

A fr ic a

Q u o ta

– �

� –

– In te rv ie w

Q u a lit a ti v e

– D e c is io n m a k in g

L o n g e t a l (5 5 )

4 3

– U n it e d K in g d o m

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P a rt n e r, p a re n t, c h ild ,

s ib lin g , c o u s in

� –

4 3 :0

0 – 2 6

In te rv ie w

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T h e m a ti c

a n a ly s is

In fo rm

a ti o n s h a ri n g in

h o s p it a l

L ó p e z M a rt ı́n e z e t a l

(2 0 )

2 4

– S p a in

P u rp o s iv e

P a rt n e r, p a re n t,

s ib lin g , c h ild

� �

1 4 :1 0

– In te rv ie w

Q u a lit a ti v e

D is c o u rs e

a n a ly s is

P ro c e s s o f o rg a n

d o n a ti o n

M a n u e l e t a l (5 6 )

– –

C a n a d a

– –

� –

– –

In te rv ie w

P h e n o m e n o lo g y

T h e m a ti c

a n a ly s is

E x p e ri e n c e s o f o rg a n

d o n a ti o n

M o ra e s a n d

M a s s a ro llo

(2 5 )

8 –

B ra zi l

– –

– �

0 :8

– In te rv ie w

P h e n o m e n o lo g y

P h e n o m e n –

o lo g y

D e c is io n m a k in g

P e lle ti e r (6 )

9 –

C a n a d a

C o m p re h e n s iv e

P a rt n e r, p a re n t,

s ib lin g

� –

9 :0

1 0 – 5

In te rv ie w

L a za ru s a n d F o lk m a n

s tr e s s a n d c o p in g

th e o ry

C o n te n t

a n a ly s is

S tr e s s in

th e o rg a n

d o n a ti o n p ro c e s s

P e lle ti e r (5 7 )

9 –

C a n a d a

C o m p re h e n s iv e

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s ib lin g

� –

9 :0

1 0 – 5

In te rv ie w

L a za ru s a n d F o lk m a n

s tr e s s a n d c o p in g

th e o ry

C o n te n t

a n a ly s is

C o p in g s tr a te g ie s

u s e d a n d e m o ti o n s

e x p e ri e n c e d

S a n n e r (5 8 )

2 0

9 1

S w e d e n

C o m p re h e n s iv e

P a rt n e r, p a re n t, c h ild

� �

– 4 – 7

In te rv ie w

Q u a lit a ti v e

T h e m a ti c

a n a ly s is

E x p e ri e n c e s o f o rg a n

d o n a ti o n (C o n ti n u e d )

Family Views on Deceased Donation

925American Journal of Transplantation 2014; 14: 923–935

T a b le

1 : C o n ti n u e d

S tu d y

N o �

R e s p o n s e

ra te

(% )

C o u n tr y

S a m p lin g

s tr a te g y

P a rt ic ip a n t

re la ti o n s h ip

C o n s e n –

te d to

d o n a ti o n

N u m b e r

c o n s e n te d

to d o n a ti o n

(Y :N )

T im

e fr a m e

(m o n th s )

D a ta

c o lle c ti o n

M e th o d o lo g ic a l

fr a m e w o rk

A n a ly s is

T o p ic

Y N

S h ih

e t a l (2 4 )

2 2

5 2

T a iw

a n

C o m p re h e n s iv e

P a rt n e r, p a re n t,

s ib lin g

� –

2 2 :0

6 In te rv ie w

Q u a lit a ti v e

T h e m a ti c

a n a ly s is

Im p a c t o f o rg a n

d o n a ti o n

S h ih

e t a l (2 4 )

2 5

2 9

T a iw

a n

C o n v e n ie n c e

P a rt n e r, p a re n t,

s ib lin g

� –

2 5 :0

0 In te rv ie w

G ro u n d e d th e o ry

G ro u n d e d

th e o ry

N e e d s a n d

e x p e c ta ti o n s

S im

in o ff e t a l (2 6 )

4 1 5

– U n it e d S ta te s

C o m p re h e n s iv e

P a rt n e r, p a re n t, c h ild

� �

– 2 – 3

In te rv ie w

Q u a lit a ti v e

C o n te n t

a n a ly s is

In te ra c ti o n w it h h e a lt h

s y s te m

S im

in o ff e t a l (5 9 )

4 0 3

9 6

U n it e d S ta te s

C o m p re h e n s iv e

– �

� –

2 – 3

In te rv ie w

Q u a lit a ti v e

C o n te n t

a n a ly s is

U n d e rs ta n d in g o f b ra in

d e a th

S im

in o ff e t a l (2 1 )

4 2 0

7 0

U n it e d S ta te s

C o m p re h e n s iv e

– �

� 2 3 9 :1 8 1

2 – 3

In te rv ie w

Q u a lit a ti v e

C o n te n t

a n a ly s is

R e a s o n s fo r c o n s e n t

S im

in o ff e t a l (6 0 )

4 2 0

7 4

U n it e d S ta te s

C o m p re h e n s iv e

– �

� –

2 -– 3

In te rv ie w

Q u a lit a ti v e

C o n te n t

a n a ly s is

T im

in g o f th e re q u e s t

fo r o rg a n d o n a ti o n

S q u e a n d P a y n e (6 1 )

2 4

3 8

U n it e d K in g d o m

P u rp o s iv e

P a rt n e r, p a re n t, c h ild

� –

2 4 :0

4 – 3 6

In te rv ie w

G ro u n d e d th e o ry

G ro u n d e d

th e o ry

D e a th , d o n a ti o n ,

d e c is io n m a k in g ,

im p a c t o f d o n a ti o n ,

p e rc e iv e d b e n e fi ts

S q u e e t a l (1 2 )

4 9

– U n it e d K in g d o m

– P a re n t, p a rt n e r, c h ild

� �

4 6 :3

3 – 2 6

In te rv ie w

– T h e m a ti c

a n a ly s is

D e c is io n m a k in g

S q u e e t a l (6 2 )

2 6

– U n it e d K in g d o m

C o n v e n ie n c e

P a rt n e r, p a re n t, c h ild ,

s ib lin g

– �

0 :2 6

– In te rv ie w

G ro u n d e d th e o ry

G ro u n d e d

th e o ry , g if t

e x c h a n g e

R e a s o n s fo r

n o n c o n s e n t

S te e d a n d W

a g e r (6 3 )

2 0

– A u s tr a lia

– –

� –

2 0 :0

– In te rv ie w

Q u a lit a ti v e

C o n te n t

a n a ly s is

B e re a v e m e n t p ro c e s s

T h o m a s e t a l (6 4 )

1 7

– A u s tr a lia

C o m p re h e n s iv e

P a rt n e r, p a re n t, c h ild ,

s ib lin g

� –

1 7 :0

2 – 1 8

In te rv ie w

Q u a lit a ti v e

G ro u n d e d

th e o ry

E x p e ri e n c e s o f o rg a n

d o n a ti o n

T o n g e t a l (6 5 )

1 3

5 8

H o n g K o n g

C o n v e n ie n c e

P a rt n e r, p a re n t, c h ild ,

s ib lin g

� �

1 2 :1

> 6

In te rv ie w

Q u a lit a ti v e

T h e m a ti c

a n a ly s is

N e e d , e x p e ri e n c e s ,

d e c is io n m a k in g

T y m s tr a e t a l (6 6 )

1 5

– T h e N e th e rl a n d s

R a n d o m

– �

� 8 :7

1 2 – 2 4

In te rv ie w

Q u a lit a ti v e

– E x p e ri e n c e s o f o rg a n

d o n a ti o n

W a rr e n (6 7 )

2 3

– U n it e d S ta te s

P u rp o s iv e

– �

� –

– In te rv ie w

P h e n o m e n o lo g y

P h e n o m e n –

o lo g y

E x p e ri e n c e o f

b e re a v e m e n t

W ils o n e t a l (6 8 )

7 7

5 5

A u s tr a lia

C o m p re h e n s iv e

P a rt n e r, p a re n t, c h ild ,

s ib lin g , fr ie n d

� –

7 7 :0

> 1 2

O p e n -t e x t

s u rv e y

re s p o n s e

– –

E x p e ri e n c e s o f ti s s u e

d o n a ti o n

y a u g m e n te d w it h S q u e (6 9 );

� m in im

u m

n u m b e r o f p a rt ic ip a n ts ; – , n o t s p e c ifi e d ; �,

in d ic a te s w h e th e r o r n o t th e p a rt ic ip a n ts

c o n s e n te d to

d o n a ti o n .

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

believeddonation 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 familymemberswere 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 theywere 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 a b le

3 : Il lu s tr a ti v e q u o ta ti o n s re fl e c ti n g e a c h th e m e

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

C o m p re h e n s io n o f u n e x p e c te d d e a th

A c c e p ti n g fi n a lit y o f lif e

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 ili ty

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 lly

d e a d .’ ’ (S w it ze 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

lif e 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 lly

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 lly

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 zi l) (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 lif e

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 lif e 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 ile .

(U S ) (3 2 )

L e tt in g th e d o n o r liv 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 ild

w a s b u ri e d , I w a s te lli n g m y s e lf th a t h e is

s ti ll a liv 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 lie 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 liv 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 lly , 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

liv in g y o u s e e .’ ’ (U K ) (5 8 )

F u lf ill in g a m o ra l

o b lig 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 llo 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 lly

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 lia ) (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 lie 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 lly

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 ili ty

fo r d e a th

H e m a y h a v e liv e d th ro u g h th is

a n d I’ d b e th e o n e to

k ill 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 liv e . W h e n y o u a u th o ri ze

th e d o n a ti o n it s e e m s lik e y o u a re

k ill in g th e

p e rs o n . (B ra zi l) (2 5 )

M e d ic a l m is tr u s t

It fe e ls lik e th e h o s p it a ls 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 ild

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 lic 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 lin 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 ily

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 ily

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 lik 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 ily

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 lie 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 lik e h e w a s s ti ll a liv e ! (S w it ze 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 lig io u s

b e lie 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 lif e . (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 ili ty

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 lit tl e 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 ile . (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 ily

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

lim 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 lia ) (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 zi l) (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 lik 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 liv in g w ill 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 ill 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 lia ) (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 lik 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

liv 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 d y a ft e r th e o p e ra ti o n . (H o n g K o n g ) (6 2 )

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 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

N e e d in g c lo s u re

A p p re c ia ti n g

a c k n o w le d g m e n t

Y e s , w h e n y o u d e c id e to

d o n a te

o rg a n s , it w a s a w fu l to

g o th ro u g h . T h e y a s k y o u m ill io n s o f q u e s ti o n s . W ill n o t e v e r d o it

a g a in . I n e v e r re c e iv e d o n e th a n k -y o u n o te

fr o m

a ll th o s e p e o p le

w h o re c e iv e d h is

o rg a n s . Y o u w o u ld

th in k s o m e o n e

w o u ld

w ri te

y o u a th a n k -y o u . (U S ) (6 4 )

(2 3 ,2 4 ,3 0 ,4 7 ,4 9 ,

6 0 – 6 6 )

K n o w in g h o w

th a n k fu l a n d a p p re c ia ti v e th e y w e re

re a lly

h e lp e d e a s e s o m e o f o u r p a in . (U S ) (4 7 )

K n o w in g re c ip ie n t

o u tc o m e

‘‘ F o r h e a v e n ’s

s a k e ! I m is s e d m y s o n m u c h . Is

it p o s s ib le

fo r y o u to

te ll m e h o w

th e re c ip ie n ts

a re

d o in g ? C a n y o u te ll m e

w h o th e re c ip ie n ts

o f m y c h ild ’s

o rg a n s a re ? H a v e th e y re c o v e re d s m o o th ly ? A re

m y d a u g h te r’ s o rg a n s fu n c ti o n in g w e ll

in th e ir n e w

h o m e s [b o d ie s ]? ’’ (T a iw

a n ) (2 4 )

(2 3 ,2 4 ,3 2 ,4 7 ,4 9 ,

5 8 ,6 0 – 6 3 )

I w o u ld

n e v e r w a n t to

k n o w

if th e tr a n s p la n t d id

n o t ta k e , th a t it w a s a ll a w a s te . (U S ) (3 2 )

U n re s o lv e d d e c is io n a l

u n c e rt a in ty

H a lf o f th e p a rt ic ip a n ts

e x p e ri e n c e s n e g a ti v e e m o ti o n s a ft e r th e o rg a n d o n a ti o n .. . O n e m o th e r h a d m ix e d fe e lin g s a b o u t

d o n a ti o n . S h e w a s a m b iv a le n t a b o u t w h e th e r th is

w a s a h a p p y o r u n h a p p y d e e d . (H o n g K o n g ) (6 2 )

(6 0 ,6 2 )

F e e lin g d is m is s e d

W e ju s t c a m e a w a y fr o m

th a t h o s p it a l w it h n o s u p p o rt , n o th in g , ju s t a p la s ti c b a g w it h h is b e lo n g in g s in , n o w h e re

w h e re

y o u c o u ld

g e t in

to u c h w it h a n y o n e if y o u n e e d e d a n y c o u n s e lli n g . It ’s

lik e y o u ju s t w a lk a w a y , e m p ty

y o u k n o w . If o n ly

th e y c o u ld

fi n d a n ic e r w a y o f d o in g it th a n ju s t w ri ti n g a d e a th

c e rt if ic a te

a n d s e n d in g y o u a w a y w it h a p la s ti c b a g . (U K )

(5 8 )

(1 2 ,2 3 ,2 4 ,4 7 ,5 8 ,

6 1 ,6 4 ,6 6 )

I a p p re c ia te d th e c a re

a n d c o n c e rn

o f th e c o o rd in a to r’ s fo llo w

u p p h o n e c a lls . (A u s tr a lia ) (6 5 )

U K , U n it e d K in g d o m ; U S , U n it e d S ta te s .

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 consentwhen 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 believedwould

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 relativemay 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

donationwas 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 hadmade 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 perceptionmay 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 theyweremerely 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 fromprevious 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 reviewmethods 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 frameworkwas

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

communicatingwith potential donor familieswould 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 decisionmaking 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

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