Patient Education and Counseling 99 (2016) 11461155

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Patient Education and Counseling

journal homepage: www.elsevier.com/locate/pateducou

Medical decision making

Family involvement in cancer treatment decision-making:

A qualitative study of patient, family, and clinician attitudes and
experiences
Rebekah Laidsaar-Powella,* , Phyllis Butowa , Stella Bua , Cathy Charlesb , Amiram Gafnib ,
Alana Fishera , Ilona Juraskovaa
a
Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), School of Psychology, The University of Sydney, New South Wales, Australia
b
Department of Clinical Epidemiology and Biostatistics and Centre for Health and Policy Analysis (CHEPA), McMaster University, Hamilton, Ontario, Canada

A R T I C L E I N F O A B S T R A C T

Article history: Objective: Little is known about how family are involved in cancer treatment decision-making. This study
Received 20 August 2015 aimed to qualitatively explore Australian oncology clinicians, patients, and family members attitudes
Received in revised form 20 January 2016 towards, and experiences of, family involvement in decision-making.
Accepted 22 January 2016
Methods: Semi-structured interviews were conducted with 30 cancer patients, 33 family members,
This paper is dedicated to the memory of 10 oncology nurses and 11 oncologists. Framework analysis methods were used.
the late Professor Cathy Charles, whose Results: Three main themes were uncovered: (i) how family are involved in the decision-making process:
insightful ideas, questions, and comments specic behaviours of family across 5 (extended) decision-making stages; (ii) attitudes towards family
have been an integral part of this program involvement in the decision-making process: balancing patient authority with the rights of the family;
of research. We will miss Cathy greatly, and (iii) factors inuencing family involvement: patient, family, cultural, relationship, and decision.
and acknowledge and appreciate her Conclusion: This study highlighted many specic behaviours of family throughout the decision-making
ground-breaking contributions to the
process, the complex participant attitudes toward retaining patient authority whilst including the family,
eld of medical decision-making.
and insight into inuencing factors. These ndings will inform a conceptual framework describing family
involvement in decision-making.
Keywords:
Practice implications: Clinicians could ascertain participant preferences and remain open to the varying
Cancer
forms of family involvement in decision-making. Given the important role of family in the decision-
Family caregivers
Communication making process, family inclusive consultation strategies are needed.
Decision-making 2016 Elsevier Ireland Ltd. All rights reserved.
Triadic
Qualitative

1. Introduction decision-making. Hilton [12] and Ohlen et al. [14] interviewed

Family members (usually a partner, adult child, parent, or
sibling but not excluding other family/friends) regularly attend
cancer consultations [1,2] and can provide emotional support,
contribute information, and participate in medical decision-
making [3]. Quantitative studies show that a majority of cancer
patients (4984%) and family members (FMs) (5459%) prefer
family participation in decision-making to some extent [49].
Similarly, oncologists also appreciate family involvement, whilst
recognising potential issues such as family dominance [10].
To date, a limited number of studies [1115] have explored
qualitative accounts of family involvement in cancer treatment
* Corresponding author at: School of Psychology, Level 6, Chris O'Brien Lifehouse
(C39Z), The University of Sydney, NSW 2006 Australia. Fax: +61 2 9036 5223.
E-mail address: rebekah.laidsaar-powell@sydney.edu.au (R. Laidsaar-Powell).
cancer patients and FMs and reported that family involvement in
decision-making can range from passive to active, and may be
inuenced by demographic, relationship, and disease factors [11].
Reust and Mattingly [15] and Hubbard [13] identied some
common family behaviours (e.g., informational support, advocacy,
sounding board) during cancer treatment decision-making.
However, a number of limitations are evident in the existing
literature. Few studies have described the range of specic
behaviours of family during the decision-making process. Addi-
tionally, two of the studies were conducted over 20 years ago and
results may not reect the current state of consultation commu-
nication and decision-making [12,15]. Ohlens [14] study described
only complementary and alternative medicine decision-making,
which may differ from decision-making dynamics for conventional
treatment. Additionally, no previous studies have qualitatively
reported the attitudes and experiences of oncologists and oncology
nurses.

http://dx.doi.org/10.1016/j.pec.2016.01.014
0738-3991/ 2016 Elsevier Ireland Ltd. All rights reserved.
 R. Laidsaar-Powell et al. / Patient Education and Counseling 99 (2016) 11461155 1147

Thus this study aimed to provide a comprehensive view of
family involvement in cancer treatment decision-making, both
within and outside of the consultation. We aimed to elicit the
attitudes and experiences of Australian oncology clinicians
(oncologists and nurses), cancer patients, and FMs of cancer
patients regarding: (i) participants experiences of how family are
involved in decision-making; (ii) participants attitudes towards
family involvement in decision-making; and (iii) participant
perceptions of factors inuencing the extent of family involvement
in decision-making.

Box 1. Overview of oncologist interview items

OVERVIEW OF ONCOLOGIST INTERVIEW ITEMS

Attitudes towards FMs in consultations

 What do you think about having FMs participate in consultations?

 Are some FMs more/less helpful than others?

FM roles in the consultation

 What roles have you observed FMs assume in a consultation?

Family involvement in decision-making

 What do you think about FM being involved in the decision-making process?

 Are there any challenges including FMs in decision-making?
 What strategies (if any) do you use to overcome these challenges?

Family involvement in decision-making stages

 How is information about different options discussed in consultations which include a FM?
 Once the information had been discussed, what happens when different options (if available) are being weighed up within
consultations? Are preferences discussed, if so by who?
 When it comes down to making the decision, what is the inuence of the family?

Family involvement in decision-making (barriers and facilitators)

 What do you think prevents FMs from participating in treatment decision-making?

 What do you think helps FMs participate in treatment decision-making?
 Can you think of any strategies to manage or enhance family involvement in decision-making?

OVERVIEW OF PATIENT INTERVIEW ITEMS

Patient experiences and attitudes

 Why did your FM come along to cancer consultations with you?

 What is it like having a FM attend cancer consultations?
 Can you describe some of the specic things that your FM did in the consultation(s) ?
 Was there anything that was hard about having a FM in a consultation?

Decision-making

 Could you tell me about how your FM was involved when you were making the decisions?
 What would you say was your FMs level of involvement in the decision?

Benets and challenges

 What are the benets of including FMs in medical decisions?

 What are the challenges of including FMs in medical decisions?

Barriers and facilitators

 Did anything help your FM to participate when you were making decisions about your treatment?
 Was there anything that prevented or stopped your FM from participating when you were making decisions about your
treatment?

Strategies

 Can you think of anything that can be done to improve consultations with a patient, FM, and doctor?
1148 R. Laidsaar-Powell et al. / Patient Education and Counseling 99 (2016) 11461155
2. Methods
2.1. Participants and procedure
Three groups of participants, who had reported experience with
family involvement in cancer treatment decision-making, were
sampled: oncology clinicians (physicians and nurses), cancer
patients, and FMs of cancer patients.
Clinicians were eligible if they were English speaking, worked
in oncology/haematology, practised in Sydney, Australia, and had
signicant experience in conducting consultations when family
were present. They were recruited through membership in a
professional association and from one participating tertiary
hospital. Eligible clinicians were sent an invitation letter or email;
interested clinicians who replied were sent an information sheet,
consent form, and questionnaire. Clinicians completed a question-
naire and participated in a semi-structured interview (either in
person or via telephone).
Cancer patients were eligible if they were English-speaking
adults with a diagnosis of cancer within the past two years, and had
an adult FM who had accompanied them to a consultation. The
adult FM was also invited to participate. Patients were recruited
through a participating tertiary metropolitan hospital oncology
clinic and a breast cancer patient advocacy group. These two
different recruitment methods were employed to ensure that both
active treatment and post-treatment perspectives, across a
number of treatment centres, were captured.
In the clinic, oncologists identied suitable patients; a clinic
staff-member then introduced the study and the researcher
invited participation. Advocacy group members were emailed by
the advocacy group and asked to contact the researchers if
interested in participating. Interested patients from both sources
were provided with an information sheet, consent form and
questionnaire and invited to nominate a FM to also participate,
who was mailed a study pack. Patients were followed up by
a phone call to conrm participation for themselves and/or
their family and an in-person or telephone interview was
arranged.
Recruitment of all participant groups continued until data
saturation, a concept used to describe the point at which
interviews fail to reveal any new information or insights [16].
was achieved. Ethical approval for all aspects of the study was
obtained from The Cancer Institute NSW Human Research Ethics
Committee.
2.2. Measures and materials
For clinicians, a questionnaire elicited demographic informa-
tion and oncology specialisation, years in oncology, and whether
any communication skills training had been completed. For
patients and family, items included demographic and clinical
characteristics (e.g., cancer site and stage) and which FMs had
attended consultations.
Semi-structured interview protocols were developed by the
research team, based on a systematic review of literature on family
involvement in medical consultations [3] and dyadic shared
decision-making theory and empirical literature [1721] (see Box 1
for physician and patient interview items). Interview items for
nurses and FMs were appropriately rephrased.
2.3. Data analysis
Questionnaire data were analysed using descriptive statistics
using SPSS Version 18. Audiotaped semi-structured interviews
were transcribed verbatim and analysed using framework
analysis methods [22] over 5 stages: (1) Familiarisation with
the data: RLP conducted all interviews, checked each transcript
for accuracy, and read each transcript several times. (2) Creating a
thematic framework: A preliminary framework was based on
independent analysis of 20% of transcripts by RLP and PB. Data
were independently organised according to concepts, themes,
and sub-themes. Different interpretations of the data were
discussed until consensus was reached on the main framework
themes. (3) Indexing: All transcripts were coded by RLP
according to the framework, with new themes and revisions to
the framework discussed with PB. (4) Charting: Themes and
supporting quotes from each transcript were transferred by RLP
to the framework matrix with participants as rows and themes as
columns using MS Excel [23]. (5) Mapping and interpretation: The
framework was examined within and across themes and
participants to identify overarching themes, subthemes, patterns,
and relationships. Rigour was addressed by repeated coding of
transcripts by different team members (RLP and PB) to ensure a
comprehensive list of themes and sub themes.
In this paper, family involvement in decision-making is
reported. Other topic results from the wider qualitative study,
such as benets/challenges of family involvement in consultations,
are reported elsewhere [24].
3. Results
3.1. Participant characteristics
Of the 18 oncologists contacted, 11 agreed to participate
(response rate 61%). Of the 21 oncology nurses contacted, 10 agreed
to participate (response rate 48%). Table 1 presents clinicians
demographic and professional characteristics. Clinicians were
highly experienced (mean oncology experience = 20 years), and
practised in a range of oncology specialities across many cancer
types.
Thirty patients (21 from the clinic, response rate 54%) and
33 FMs (26 from the clinic, response rate 67%) (see Table 2),
participated. The majority of FMs (76%) were spouses of the
patient. Mean duration of interviews in minutes was 43 (patients),
35 (family), 43 (oncologists) and 53 (nurses).
4. Qualitative themes
Three main themes derived from the data will be explored: (i)
participants experiences of family behaviours during the decision-
making process; (ii) participants attitudes towards family
involvement in the decision-making process; and (iii) participants
perceptions of the factors inuencing family involvement (see
Box 2).
4.1. Family behaviours during the decision-making process
Participants were asked to describe their experiences of family
involvement during the different stages of decision-making,
namely information exchange (sharing of relevant medical and
personal information), deliberation (expressing and discussing
treatment preferences), and decision (reaching an agreement and
action plan to follow) [17,18]. Since many participants described
relevant family behaviours outside of the consultation, two
additional decision-making stages, pre-consultation preparation
and post-decision deliberation, were included. Therefore, both
triadic (clinician-patient-family) in-consultation exchanges and
dyadic (patient-family) outside-consultation exchanges are de-
scribed below. For illustrative quotations supporting each sub-
theme, see Table 3.
 R. Laidsaar-Powell et al. / Patient Education and Counseling 99 (2016) 11461155 1149

Table 1 outside the consultation where the FM may have recalled and
Demographic and professional characteristics of oncology clinicians.
discussed information with the patient, other family and friends, or
Oncology Physicians (n = 11) Oncology Nurses researched various treatments (usually on the Internet).
(n = 10)
Age 4.1.3. Family involvement in deliberation
Mean [range] 50 [3669] 48 [3961] Reports of family involvement during deliberation varied
widely. Many FMs reportedly supported the patients preferences
Gender
Male 8 1
and wishes. Some acted as a sounding board for the patient,
Female 3 9 discussing options to clarify the patients own preferences and
goals. A few FMs were reported to have provided their own
Experience (Medical) decision-making preferences and a minority reportedly dominated
Mean [range] 24 [1045] 27 [18 41]
the deliberation, leaving little room for patient preferences. When
Experience (Oncology) describing in-consultation deliberation, some participants
Mean [range] 19 [737] 21 [1031] highlighted that coalitions/alliances formed between two of the
members, particularly in cases of conicting patient/family
Specialtya
treatment preferences (e.g., a clinician may openly support the
Medical Oncology 7 4
Surgical Oncology 2 4
patients preference). Additionally, during in-consultation deliber-
Radiation Oncology 2 2 ation, some patients and FMs reportedly conferred about the
Other (e.g., Haematology) 3 decision together in a separate exclusive discussion. Most
participants conrmed that deliberation between the patient
and family continued outside of the consultation, and was seen as
Cancer type treatedb
Genitourinary 3 1 benecial. Deliberation was reported by some participants to be a
Lung 3 lengthy process of ongoing, iterative, informal discussions about
Breast 2 ideas, preferences, and feelings between the patient and family.
Gastrointestinal 2
Melanoma 2
Colorectal 1 3
4.1.4. Family involvement in the decision stage
Gynaecology 1 Family involvement in this stage ranged from no involvement to
Head & Neck 1 5 dominance, however most participants reported that the patient
Heterogeneous 1 1 made the nal decision. Some clinicians surmised that typically
Haematology
patients and FMs discussed information and deliberated about the
Position decision together, but the patients retained authority over the
Consultant/staff specialist 8 decision and made the decision themselves with the family as
Other (e.g., Fellow) 3 supporters. Based on participants reports, four overarching types
Clinical nurse consultant 4 of family inuence over decisions emerged, which ranged from no
Nurse practitioner 1
Other (e.g., research nurse) 5
inuence through to dominance.

Communication skills trainingc
Yes 9 decision-making. A small number of participants reported
No 2
a
Oncology nurses: specialty exceeds total n, as nurses practiced in >1 oncology
specialty.
b
Oncologist: cancer type treated exceeds total n, as oncologists specialised in
>1 cancer type.
c
Any formal communication skills training since medical school- oncologists
only.
4.1.1. Family involvement in pre-consultation preparation
Several clinicians, patients, and FMs noted that family can be
involved in decision-making prior to a consultation where a
decision is discussed. Initially, some FMs reportedly inuenced
which oncologist to see or which treatment centre to attend. Some
patients and FMs researched the disease and potential treatments
and discussed options prior to the consultation, sometimes with
other family and friends.
4.1.2. Family involvement in information exchange
Almost all participants reported that family were involved, to
varying extents, in information exchange, within and/or outside of
the consultation. Commonly reported family consultation behav-
iours involved providing informational assistance: (i) to the patient
(e.g., listening to information presented by the clinician, asking
questions, taking notes, simplifying information for the patient),
and (ii) to the clinician (e.g., providing social or medical
information about the patient). Many participants noted that
information exchange continued with the patient and their family
4.1.4.1. No family inuence: Oncologist and/or patient controlled
situations where the family (while present in the consultation)
had no inuence over the decision. In these situations, the decision
was made by the patient and/or oncologist. Some FMs indicated
satisfaction with their limited role, whilst others wanted more
input into decision-making and for their views to be considered.
4.1.4.2. Family inuence through proximal actions. A large number
of participants described situations where the familys inuence
over the decision manifested in their more proximal behaviours
such as the provision of emotional and informational support,
rather than overtly providing their opinions/wishes. Some FMs
reportedly provided emotional support to the patient during the
decision-making process, supported the patients autonomous
choices, and showed condence in the patients decision-making
abilities while censoring their own opinions. Additionally, a large
number of FMs reportedly assisted and facilitated the decision-
making through gathering information, reinforcing patient
understanding of information, and acting as a sounding board
for the patient. It was through these facilitative behaviours that
family was involved in, and potentially inuenced, the decision-
making process.
4.1.4.3. Shared patient and family inuence. A large number of
participants described situations where decisions were shared
among the patient, family, and potentially oncologist. In these
situations, the FMs inuence over the decision was considered
roughly equivalent to that of the patient. In addition to the more
proximal actions such as provision of emotional and informational
1150 R. Laidsaar-Powell et al. / Patient Education and Counseling 99 (2016) 11461155

Table 2 and one patient-family pair reported changing the decision once
Demographic and clinical characteristics of patients and family members.
they discussed it more at home.
Characteristic Patients Family members
(n = 30) (n = 33) 4.2. Attitudes towards family involvement in the decision-making
Age process: Balancing patient authority and the rights of the family
Mean [Range] 56 [3080] 54 [2881]
Participants were asked to comment on their views about
Sex
Male 15 13
family involvement in decision-making. Mostly, participants
Female 15 20 indicated that they favoured family involvement in the decision-
making process to some extent; however, most also highlighted
Education that the patient should have nal authority over the decision. For
Year 12 or below 11 13
some participants, there seemed to be a balancing of patient
University degree 13 13
TAFE certicate/diploma 6 7 authority with family inclusion. See Table 4 for illustrative
quotations.
Marital status
Married or living with partner 26 31
4.2.1. Patient authority over decisions
Widowed 2 2
Separated or divorced 2 0
Almost all clinicians, patients, and FMs stated that the patient
should be the one with the nal say over the decision; however
Primary cancer diagnosis reasons for these views varied. Many clinicians stated that patient
Lung 7 9 wishes should be paramount and that patients should retain
Genitourinary 7 8
ownership of decisions. Clinicians felt a responsibility to the
Breast 10 7
Gastrointestinal 2 4 patient and discussed the importance of patient consent,
Renal 1 2 sometimes noting they were guided by laws that protect patient
Other 3 3 condentiality and autonomy. Many challenges of family involve-
ment reported by clinicians related to situations where the family
Current treatment stage of patient
Discussing treatment options 1 2
reportedly compromised the patients autonomy, for example by
Receiving active treatment 7 8 requesting non-disclosure of diagnosis, having treatment wishes
Clinical Trial 4 5 that conicted with the patients, or trying to exert undue
Discussing treatment options after 4 3 inuence. Many patients and FMs commented that it is the
recurrence
patients body that is affected and thus the patient should make
Receiving treatment after recurrence 4 4
Completed active treatment 9 9 decisions because they are affected most. A few FMs also noted a
Palliative care 1 2 fear that if something went wrong, they would feel responsibility
or regret, and thus desired the patient to have decision-making
Family member type authority.
Wife/Female Partner 15
Husband/Male Partner 10
Son 2 4.2.2. The rights of the family to be involved in decision-making
Daughter 1 Despite the widely-held view that the patient should retain
Sister 1 decision-making authority, many participants also acknowledged
Other (Friend, brother-in-law, great-aunt) 4
that the family deserve involvement in decision-making because
cancer diagnosis and treatment also affects them. Many patients
and some clinicians and FMs noted that family may be affected by
decisions emotionally (such as having to cope with the sadness,
support, these FMs provided their own opinions/preferences for uncertainty, and stress of an unwell loved one with minimal
the decision. Clinicians who described shared patient and family support) and practically (such as assisting the patient with
inuence typically maintained thatalthough the process was receiving treatment, making lifestyle changes, and the impact of
shared between the patient and familythe patient should, at the the caregiving role on the FMs employment).
end of the day, retain nal decision-making control. The sharing of Several participants noted that some specic situations called
decisions was often assumed by spouses/partners rather than for greater family involvement. For example, a few participants
distant family (e.g., aunt) or friends. noted the importance of including partners in decisions which: (i)
may affect fertility and sexuality, given the direct impact on the
4.1.4.4. Dominant family inuence. Several clinicians, but only a partner or (ii) when they and the patient had young children at
minority of patients and FMs, described situations where the home, since the partner reportedly acted as a representative of
family made the decision and the patient assumed a passive role. the wider family unit. Additionally, some participants noted the
Many clinicians viewed family dominance over decisions with need for family to be involved in end-of-life decisions, given that
suspicion, but of the few patients and FMs who described these the family unit may have limited time left together and may be
dynamics, most appeared comfortable with family control. Some assuming a large proportion of the caregiving responsibilities for
of the reasons for family-dominant decision-making described by an increasingly unwell patient.
patients and FMs were: (i) the FM was perceived to have greater
medical knowledge than the patient, or (ii) the patient was 4.2.3. Balancing patient authority with family involvement
considered to have limited understanding of English language. Overall, many participants felt that family involvement in
decision-making does not necessarily erode patient authority. In
4.1.5. Post decision deliberation fact, some indicated that family involvement may enhance patient
A few FMs and patients reported that they continued to discuss involvement and autonomy in decision-making. Every clinician
the decision after it was made (but was not irrevocable), such as acknowledged the valuable informational support (e.g., asking
commencement of chemo- or radio- therapy. They reported questions, taking notes, recalling information) provided by FMs to
continued deliberation about whether it was the right decision, the patient. Clinicians described other family roles perceived as
 R. Laidsaar-Powell et al. / Patient Education and Counseling 99 (2016) 11461155 1151

Box 2. Overview of qualitative themes

OVERVIEW OF THEMES
How family are involved in the decision-making process

 Pre consultation preparation

 Information exchange
 Deliberation
 Decision
 No family inuence: Oncologist and/or patient controlled decision-making
 Family inuence through proximal actions
 Shared family inuence
 Controlling family inuence
 Post decision deliberation

Attitudes towards family involvement in the decision-making process

 Patient authority over decisions

 The rights of the family
 Balancing patient authority with family involvement

Factors inuencing family involvement

 Patient factors
 Family factors
 Cultural factors
 Relationship factors
 Decision factors

enhancing patient involvement in decisions, such as emotional 4.3.2. Family factors

support, advocacy (e.g., bolstering patient condence to share
views, raising issues on the patients behalf) or playing devils
advocate (questioning the information provided or whether a
certain decision is the right one for the patient). Many FMs saw
their role as a backup or auxiliary support to the patient; and
whilst some FMs reported providing their opinions about
decisions, most believed that ultimately, it was the patients
decision.
Mostly, clinicians appeared comfortable with the varying levels
of family involvement up to a certain point- when the family
appeared to dominate the decision. Even then, some clinicians
acknowledged that family dominance may be appropriate if the
patient: (i) is from a culture which values active family
involvement in decision-making; (ii) has willingly deferred the
decision, or (iii) is too frail to make the decision alone. Patient and
family preferences for family involvement varied widely, and a few
participants indicated that preferences should be routinely
claried.
4.3. Factors inuencing family involvement
Clinicians proposed that actively involved FMs tended to be
middle aged (compared to elderly or young adult FMs), of a
different generation to the patient (particularly if the patient was
an elderly parent), female, well-educated (particularly if there was
a discrepancy between patient and family education levels) and
possessed professional medical or allied health experience.
4.3.3. Cultural factors
Several clinicians noted that families were typically more
involved if they or the patient were from a culturally or
linguistically diverse (CALD) background, perhaps due to the
inuence of cultural norms and/or language barriers.
4.3.4. Relationship factors
Many clinicians believed families tended to be more involved in
decision-making when they had a strong and close relationship
with the patient, proposed to occur more often among spouses,
parents, and children. Some clinicians proposed the pre-existing
patientfamily relationship dynamics inuenced the decision-
making process.

All clinicians described the variability of family involvement in
decision-making, inuenced by an array of factors (patient, family,
cultural, relationship, and decision). For illustrative quotations, see
Table 5.
4.3.1. Patient factors
Clinicians proposed that family tended to be more involved
when the patient was younger or older (rather than middle aged),
physically or mentally unwell, or had a withdrawn personality.
Clinicians proposed that well educated patients, or those with
medical knowledge/training, were less likely to have family
actively involved.
4.3.5. Decision factors
Several clinicians noted that family involvement can evolve
across the illness trajectory, and greater family involvement
typically occurred when decisions were important (e.g., com-
mencing, changing, or ceasing treatment; treating disease recur-
rence; end-of-life decisions) or complex (e.g., many treatment
options; no clear choice when weighing up the benets and harms
of options). Family were also reportedly more involved when the
decision directly involved them such as treatments affecting the
patients sexual function or fertility, or requiring a high degree of
family assistance (such as transporting and accompanying the
patient to treatments).
1152 R. Laidsaar-Powell et al. / Patient Education and Counseling 99 (2016) 11461155

Table 3
Family involvement across the stages of decision-making: illustrative quotations.

Pre consultation preparation

 We already received a certain amount of information and we looked it up, researched it ourselves, so we already had what we had discovered- - -Patient (advocacy group)
 We had already made up our mind before we went in there- - - Family member (clinic)

Information exchange

 I think the family members role is to . . . try and nd out as much information as they can about the different options. I think in that situation where a persons given an option,
sometimes the patient will not take it all in and it will just go over their head. So I think the family members role is to get the specics of the different treatments- - - Nurse
 In every single one often those decisions during consultations we didn't talk very much about it, we were both in questioning mode. Afterwards then we discussed with each
other both immediately afterwards, that evening, the next day, we discussed what we believed the Doctor had meant . . . and then we discussed how [patient] felt about it- - -
Patient (advocacy group)
 When she was looking at alternative therapy I was a little bit concerned about what she was considering . . . So I researched it myself and got more information and suggested
that she discuss it with the oncologist- - - Family Member (advocacy group)

Deliberation

 Theres usually a moment where they basically have to say, Yes, or No, or, . . . I will go away and think about it, at which point they [patient and family] will normally turn
to one another and say, Well, this is what weve got to do, or Im not happy. So theyll normally turn away from the doctor and to one another- - - Nurse
 Weve sort of looked at one another before making the decision together, every decision has been one of mutual agreement . . . See when weve both been there it's very easy to
make the decision because were both getting the information and we sort of look at one another and go yeah- - - Patient (clinic)
 I deliberately tried to play devils advocate every now and again . . . I wanted him to be clear about what he had wanted . . . I would say do you not want to do any of that,
why would you want to do that, knowing that he was leaning towards doing it or the other way around . . . it helped him clarify- - - Family Member (clinic)
 Where it wasnt a clear cut path I think that it's sort of been a dialogue and . . . sort of a Socratic [method] in a way that it goes back and forth and back and forth and
eventually...the pathway does sort of emerge- - - Patient (clinic)

Decision
No family inuence: oncologist and/or patient controlled DM

 It's pretty basic stuff . . . I go along with what the specialists recommend and I am not going to argue against what they say- - - Patient (clinic)
 Well . . . she [wife] does nothing really, she is just there for me and anything I want to talk about she listens and when I make decisions, I tell her what I am thinking and she
listens to me- - - Patient (clinic)

Family inuence through proximal actions

 I didnt want to inuence [patients] decision but I wanted to help her sort through that information . . . and I felt like I did that . . . I wrote down things to help her understand
what was going on and probed her to ask about the alternative therapies that she was considering- - - Family Member (advocacy group)
 I am just here to...paddle the boat with you. [Patient] steers it and were just here- - - Family Member (clinic)
 They [family] just allowed me to have the discussion with them, the pros and cons. They asked if we do it this way or the other way, how would you feel about that? Would you
go for a breast implant? I mean we talked about all of that stuff . . . the decision at the end of the day, they made it clear that it was mine- - - Patient (clinic)
 It was his [patients] decision, every time. All I did was feed and occasionally provoke- - -Family member (advocacy group)
 [Patient] made the decision. She pretty much made it by herself . . . I deliberately wouldnt have inuenced the decision. So in a lot of ways it was how could I make it easier for
her? or how could I facilitate the process of [Patient] making the decision?- - - Family Member (advocacy group)
 Often a big part of my role isn't the decision making as it is the facilitating . . . I will push it and go well you know maybe we can ask him if we can have the biopsy, if that is
feasible and I will make the phone call and I will do the pushing to facilitate [patients] wish I guess. So I do a lot more of that as opposed to the actual decision making- - - Family
Member (clinic)

Shared family inuence

 We try as much as possible to share decision making, and that you present options to a patient, and that you work towards making a decision about whats best. Obviously, the
patient has the nal say, but patients rarely want to go against the wishes of their signicant others, and so the shared decision making actually ends up being shared decision
making among all family members. So you really do have to work on getting consensus- - - Radiation Oncologist.
 I think in a way it was a joint decision. [Patient] had her point of view and I gave my point of view and we sat down quietly and talked about it and worked out the pros and cons.
I never forced [patient] into it . . . and she never forced me not to do it- - - Family Member (advocacy group)
 If my wife is not at peace with it [decision] or I am not at peace with it, well then we don't do it. Weve both got to be at ease with it- - - Patient (clinic)

Dominant family inuence

 I run the ship . . . If I said to [Patient] you need to jump off the Harbour Bridge because that will x it he will say ok- - - Family Member (clinic)
 There are times when [unwell, exhausted] patients will actually say, Look, just ask him [husband] . . . I just dont feel like I can make another decision- Oncology Nurse

Post decision deliberation

 I believe the concept of revisiting the decision is about reassuring yourself that youve made the decision that's best for you before it becomes irrevocable . . . Sometimes you will
revisit that decision because you come up with new information . . . my role there was to listen very carefully and when it was needed to annunciate what this information
really meant for what we had decided and then discuss whether we felt we needed to change the decision- - - Family Member (advocacy group)

5. Discussion decision-making. It provides new and in-depth insights into the

To our knowledge, this is the rst study to qualitatively and
concurrently examine the decision-making attitudes and experi-
ences of cancer patients, FMs, and clinicians; providing compre-
hensive, triangulated insight into a relatively unexplored area of
specic behaviours of family across several stages of decision-
making, and the attitudes of various stakeholders towards the
involvement of family in treatment decisions.
Our participants experiences provided new perspectives on the
stages of decision-making, and might help to expand its
 R. Laidsaar-Powell et al. / Patient Education and Counseling 99 (2016) 11461155 1153

Table 4
Balancing patient authority and the rights of the family: Illustrative quotations.

Patient as priority

 Increasingly its been made clear to us by privacy laws, the patient is our main concern. You certainly answer the relatives questions and explain things to them. Its all us and the
patient predominantly. [Family] can help or hinder, but my relationship is with that patient- - - Medical Oncologist
 The partner . . . is just sort of coming along for the ride, because at the end of the day, they can only make suggestions. And while it might have a big impact on them, its the
patient that will nally sign the paper and say, Yes, Im having this done . . . the bottom line . . . its got to be the patients decision- - - Oncology Nurse
 At the end of the day, you have to wear that decision, you are the one that has to be cut open. Youre the one that has to get through the treatment . . . I think its best to make the
decision yourself- - - Patient (clinic)
 My view has always been that [patient] makes the decisions and I have some input into it so.. at the end of the day its her health, her body, her life- - - Family member
(advocacy group)

The rights of the family

 I think its also important [to have family involved] if the treatment is going to be very intrusive. One of the main side effects of treatment is inconvenience. If the inconvenience is
affecting the whole support network, it becomes not just the patients wellbeing, which is important, but what about the whole unit which is meant to be coping with this?- - -
Medical Oncologist.
 I think it is important, and particularly with this sort of a cancer [prostate] because of the effect that it has on sexuality. I think its important then that partners are involved in it
[decision-making]- - - Oncology Nurse.
 My observation has been that the carer has a worse time than the person suffering the disease, and the person suffering the disease focuses on themselves and the disease. The
carer is coping with uncertainty . . . and so I believe that the carer has a much tougher time. Part of my motivation has been to include [wife] in everything- - - Patient (clinic)
 Because I am part of a family and it's important for the family that were all together, were not individuals, were all together and the decisions we were making were going to
have massive impacts on my family so... they were decisions that were based on what was best for everybody.Patient (advocacy group)
 It was our lives . . . I might have been the one having cancer but it had a huge impact on [partner] as well. I think it was important for him to be there because . . . he almost
had an equal voting right in terms of the decisions we had to make, particularly around fertility . . . it was incredibly important for us [patient and partner] to work out what
we wanted from our lives going forward . . . picking the things that were important to us . . . so we chose for me to have surgery rst and then chemo to give us time to do
fertility treatment - - - Patient (advocacy group)
 Cancer doesn't affect one member, it affects the entire family . . . Weve got big decisions to make as a family . . . So it's very important that I am included in the process because
the bottom line for [Patient] and I is how much time weve got left. It's probably more important for me than [Patient] . . . I need to know what to do, I need the information so I
can make rational decisions [about the future]- - - Family member (clinic)
 Part of my strength . . . of being involved in the decision making was because of our daughter. And part of my desire to inuence the decisions . . . was because of how I felt
about [daughter] as well. If we had been a childless couple I would still have participated in it but I perhaps might have been more accepting when [wife] made decisions that I
felt were not in the best interest of us, but because weve got a daughter involved as well the us became a lot stronger - - - Family member (advocacy group)

Balancing patient authority with family involvement

 It was my decision for everything but...I really wanted to know what they were feeling and what they were thinking but . . . at the end of the day it was all about me and my
health- - - Patient (clinic)
 I very much felt like it was my decision to make . . . If I really wanted to do it one way and [husband] thought it should be done a different way, I think we would have a much
longer conversation but at the end of the day . . . I did feel empowered that it was my decision to make. However I really rely on [husband] to help me make decisions- - -
Patient (advocacy group)
 Its primarily the patients decision, but the patient, I know her well, will denitely be inuenced by what they doctor recommends and what I think . . . Neither of them
ultimately is going to be the determinant of the decision, it will be her decision, but she will take notice of what the doctor says and particularly in what I [husband] think- - -
Family member (clinic)
 At the end of the day, the individuals health decisions or any decisions are their own and I guess people around them can inuence them by supporting and helping with
information- - - FM (advocacy group)
 So there are times when patients will actually say, Look, just ask him, or, Ask her, I just dont feel like I can make another decision. So it really depends where theyre at- - -
Nurse

conceptualisation. Namely, family may be involved across many
stages of decision-making, within and outside, as well as before
and after, the consultation. A considerable amount of information
gathering/exchange and deliberation reportedly occurred outside
of the consultation without the presence of a clinician. This nding
is mirrored by Hubbard et al. [13] who found that family often
stimulate thinking and discussion about the decision behind the
scenes at home and proposed that the extent to which this occurs
may not be apparent to clinicians. Given these ndings, it may be
benecial for clinicians to be made aware of the nature of at home
decision-making and, if feasible and desired, allow sufcient time
for patients and family to privately process a decision outside of
the consultation environment.
The current study also highlighted the many varied behaviours
of FMs across these stages of decision-making. It revealed that
familys contributions to decision-making often manifest in their
(more indirect) supportive and facilitative behaviours rather than
overt sharing of opinions and preferences. For many, the familys
supportive and facilitative involvement enhanced the patients
autonomy rather than eroded it. These ndings provide further
empirical support for Epsteins concept of shared mind [25].
which highlights that decisions may be made within social
networks- where new ideas and perspectives may emerge through
the sharing of thoughts and feelings between individuals. In line
with our participants accounts, Epstein [25] proposed that
relationships (such as with family/friends) can enhance a patients
autonomy during the decision-making process by helping them to
process complex information which may otherwise overwhelm an
individual. The role and ability of FMs to bolster the patients voice
in decision-making, particularly if the patient feels vulnerable in
some way and/or is less likely to express their own preferences,
requires further research. Additionally, participant accounts
indicate that the extent of inuence that family may have over
decisions appears to rest on a spectrum, similar to that proposed by
Ohlen et al. [14] ranging from passive to dominant. These ndings
may be useful for future development of decision-making theory
which accommodates family.
The current study highlighted the complexities of balancing
patient authority with the perceived rights of the family. Many
clinicians appeared to be inuenced by their legal and professional
duties, which in Western countries such as Australia, promote
patient autonomy and provision of informed consent [26].
1154 R. Laidsaar-Powell et al. / Patient Education and Counseling 99 (2016) 11461155

Table 5
Characteristics inuencing family involvement: Illustrative quotations.

Overall approach to variability

 I think it [family involvement] is just a very individual thing. I think the gender comes into it. Where that decision is in their journey and the signicance of that decision. Your
generation comes into it and ethnicity comes into it. They all impact- - - Oncology Nurse

Patient factors

 I think its the more needy patients [who have active family involvement]the very young and the very old are the most common, or the ones who are physically debilitated and
needing the care for physical reasons. And then nally, those who either have a mental health disorder or severe anxiety or depression. So I guess its usually some sort of
vulnerability- - - Medical Oncologist

Family factors

 The parents of the younger [adolescent/young adult] children or the [adult] children of the older patients are actually taking a more active role in the decision making- - -
Medical Oncologist

Cultural factors

 In non-English speaking background families, its much more likely that the family is going to play a bigger role in decision-making, where youve got the overlapping issues of
language and culture and sometimes generations as well- - - Medical Oncologist

Relationship factors

 If you are a family member and you are close to that person if you are a parent or a wife or a spouse or a child . . . theres this real feeling of keeping them alive. When its an
elderly lady and their niece comes along, and thats sort of a bit more remote, then you tend to nd the decisions are different, and the conversation is a little bit different- - -
Oncology Nurse

Decision factors

 Im not sure that its very different than any other big life decision. So most people, for example, who buy a house wont just go to a real-estate agent by themselves, go off, look at
the rst house they see and buy it. On the other hand, if you are buying a toaster, you would very happily go and not ask any advice, not ask any opinions of anybody else . . . Its
very similar I think. So decisions that are big, complex decisions with long-term ramications, you need help. I think we all need to be able to . . . give ourselves some certainty
that were making the right decision, and its hard to do that in isolation- - - Medical Oncologist

However, this individualistic approach to patient autonomy does
not appear to align with patients, FMs, and some clinicians
reported preferences and experiences. Indeed, most patients and
FMs in the current study reported that they both experienced and
preferred either patient led decision-making with family support
or shared patientfamily decision-making. Few participants
experienced no family involvement or family dominance. These
ndings are similar to those of Shin et al. [9] who found that a
majority of cancer patients and FMs experienced and preferred
patient led decision-making with family input, with few reporting
unilateral decision-making dynamics (e.g., no family input,
complete family dominance). Our study also aligns with Gilbar
[27] who, after interviewing patients, FMs and physicians in the
general practice setting, concluded that family are routinely
involved in decisions and should be welcomed into the decision-
making process.
Some clinicians, patients, and FMs reported believing that certain
situations may require greater family inuence over decisions. These
included decisions impacting on fertility and sexuality amongst
partners, decisions where the family had to assume an active
caregiving role in the provision of treatment, and decisions at the
end of life. These ndings highlight the need for clinicians to be
exible in their approach towards family and to accommodate the
family during important treatment decision discussions, particularly
when family are heavily impacted by the potential consequences of
the decision. Recently, the importance of family input has been
recognised legally such as the inclusion of carers in the shared
decision-making section of the Patient Protection and Affordable
Care Act [28] and the Carers Recognition Act in Australia [29];
however, it remains unclear if and how these family inclusive
developments will be translated into clinical practice.
Additionally, many clinicians noted that the extent of family
involvement may be inuenced by patient, family, cultural,
relationship, and disease factors. In support of this, a survey of
5,284 cancer patients found greater family decision-making input
among patients from Asian and Hispanic backgrounds (particularly
with limited English), married patients, female patients, and older
patients [30]. Other studies have also found that the disease type
and severity may inuence patient preferences for the extent of
family involvement in decision-making [5,31]. A number of novel
factors were also proposed by participants as being linked to
increased family involvement, such as patient/family personality
factors, patientfamily relationship characteristics, and character-
istics of the decision itself. Given the wide, and often overlapping,
number of factors which may inuence preferences for family
involvement, it is important that clinicians clarify preferences for
the extent of family involvement and remain exible and
responsive to those preferences
The current study has a number of limitations. Due to the high
proportion of oncologists who had completed communication skills
training programs (> 80%), the very experienced nature of the
clinician sample, and potential self-selection bias, the ndings may
be biased to reect the views of clinicians who are interested in and
inclusive of families. Future research is needed amongst more junior
oncology clinicians. Whilst we attempted to obtain a wide range of
views through the use of two recruitment strategies (oncology clinic
and advocacy group) for patients and FMs, self-selection biases are
also possible, particularly amongst the advocacy group participants
whose attitudes and experiences may reect those of more
interested patients and FMs. Finally, our study ndings may be
biased towards the views of married/partnered patient-family
dyads. Further research among other family relationship types
(e.g., parent-adult child, siblings) is needed.
6. Conclusion
Family involvement in cancer treatment decision-making is
variable and complex. The current study has highlighted many
 R. Laidsaar-Powell et al. / Patient Education and Counseling 99 (2016) 11461155
family behaviours throughout the decision-making process such as
researching treatments, asking questions, recalling information,
and acting as a sounding board often commencing before
consultations and continuing after a decision has been made.
However, whilst FMs may make a signicant contribution to the
decision-making process, most participants stated that the needs
and preferences of the patient were paramount.
In addition, this study provided insight into the many factors
that may inuence the level of family involvement. Given the
limited description of family in current decision-making theory,
our research group plans to integrate these ndings into a
conceptual framework describing family involvement in deci-
sion-making.
6.1. Practice implications
The ndings of our study indicate that family involvement in
decision-making is often preferred and appreciated, although
preferences for the nature and extent of their involvement may ebb
and ow based on the evolving nature of the illness, and variety of
other inuencing factors. Therefore, it may be benecial if
clinicians ascertain participant preferences for family involvement
in decision-making and remain exible and open to the many,
varying ways family can be involved. Clinicians may also benet by
understanding that, when family are involved, the decision-
making process often starts before the initial visit, and will usually
continue after the patient and family have left the consultation.
Given how integral many FMs are in the decision-making process,
clinicians should consider welcoming family attendance at
consultations, engaging with them throughout the decision-
making process, and attempting to meet their informational
needs. Development of clinical strategies to assist clinicians to
practically engage with family, whilst not undermining the patient
focus, is needed.
Acknowledgement
We gratefully acknowledge the Informed Medical Decisions
Foundation for providing funds to support this project [Grant
Number 0176-1]
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