Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences.

G Model PEC 5268 No. of Pages 10

Patient Education and Counseling xxx (2015) xxx–xxx

Contents lists available at ScienceDirect

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 b

Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), School of Psychology, The University of Sydney, New South Wales, Australia 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: Received 20 August 2015 Received in revised form 20 January 2016 Accepted 22 January 2016

Objective: Little is known about how family are involved in cancer treatment decision-making. This study aimed to qualitatively explore Australian oncology clinicians’, patients’, and family members’ attitudes towards, and experiences of, family involvement in decision-making. Methods: Semi-structured interviews were conducted with 30 cancer patients, 33 family members, 10 oncology nurses and 11 oncologists. Framework analysis methods were used. Results: Three main themes were uncovered: (i) how family are involved in the decision-making process: specific behaviours of family across 5 (extended) decision-making stages; (ii) attitudes towards family involvement in the decision-making process: balancing patient authority with the rights of the family; and (iii) factors influencing family involvement: patient, family, cultural, relationship, and decision. Conclusion: This study highlighted many specific behaviours of family throughout the decision-making process, the complex participant attitudes toward retaining patient authority whilst including the family, and insight into influencing factors. These findings will inform a conceptual framework describing family involvement in decision-making. Practice implications: Clinicians could ascertain participant preferences and remain open to the varying forms of family involvement in decision-making. Given the important role of family in the decisionmaking process, family inclusive consultation strategies are needed. ã 2016 Elsevier Ireland Ltd. All rights reserved.

This paper is dedicated to the memory of the late Professor Cathy Charles, whose insightful ideas, questions, and comments have been an integral part of this program of research. We will miss Cathy greatly, and acknowledge and appreciate her ground-breaking contributions of the field of medical decision-making. Keywords: Cancer Family caregivers Communication Decision-making Triadic Qualitative

1. Introduction 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 decisionmaking [3]. Quantitative studies show that a majority of cancer patients (49–84%) and family members (FMs) (54–59%) prefer family participation in decision-making to some extent [4–9]. Similarly, oncologists also appreciate family involvement, whilst recognising potential issues such as family dominance [10]. To date, a limited number of studies [11–15] 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: [email protected] (R. Laidsaar-Powell).

decision-making. Hilton [12] and Ohlen et al. [14] interviewed cancer patients and FMs and reported that family involvement in decision-making can range from passive to active, and may be influenced by demographic, relationship, and disease factors [11]. Reust and Mattingly [15] and Hubbard [13] identified 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 specific behaviours of family during the decision-making process. Additionally, two of the studies were conducted over 20 years ago and results may not reflect the current state of consultation communication and decision-making [12,15]. Ohlen’s [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/ ã 2016 Elsevier Ireland Ltd. All rights reserved.

Please cite this article in press as: R. Laidsaar-Powell, et al., Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences, Patient Educ Couns (2016), http://dx.doi.org/10.1016/j.pec.2016.01.014


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R. Laidsaar-Powell et al. / Patient Education and Counseling xxx (2015) xxx–xxx

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 influencing 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 influence 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 specific 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 FM’s level of involvement in the decision? Benefits and challenges What are the benefits 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?




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 significant 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 questionnaire 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 identified 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 confirm 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 information 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 [17–21] (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

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the data: RL–P 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 RL–P 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 RL–P 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 RL–P 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 (RL–P 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 benefits/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 decisionmaking process; (ii) participants’ attitudes towards family involvement in the decision-making process; and (iii) participants’ perceptions of the factors influencing 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 described below. For illustrative quotations supporting each subtheme, see Table 3.



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Table 1 Demographic and professional characteristics of oncology clinicians. Oncology Physicians (n = 11) Oncology Nurses (n = 10) Age Mean [range] Gender Male Female – Experience (Medical) Mean [range] – Experience (Oncology) Mean [range] – Specialtya Medical Oncology Surgical Oncology Radiation Oncology Other (e.g., Haematology)

Cancer type treatedb Genitourinary Lung Breast Gastrointestinal Melanoma Colorectal Gynaecology Head & Neck Heterogeneous Haematology Position Consultant/staff specialist Other (e.g., Fellow) Clinical nurse consultant Nurse practitioner Other (e.g., research nurse)

50 [36–69]

48 [39–61]

8 3

1 9

24 [10–45]

27 [18– 41]

19 [7–37]

21 [10–31]

7 2 2

4 4 2 3

3 3 2 2 2 1 1 1 1

1

3 5 1

8 3 4 1 5

Communication skills trainingc Yes 9 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 influenced 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 behaviours 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

outside the consultation where the FM may have recalled and discussed information with the patient, other family and friends, or researched various treatments (usually on the Internet). 4.1.3. Family involvement in ‘deliberation’ Reports of family involvement during deliberation varied widely. Many FMs reportedly supported the patient’s preferences and wishes. Some acted as a sounding board for the patient, discussing options to clarify the patient’s own preferences and goals. A few FMs were reported to have provided their own decision-making preferences and a minority reportedly dominated the deliberation, leaving little room for patient preferences. When describing in-consultation deliberation, some participants highlighted that coalitions/alliances formed between two of the members, particularly in cases of conflicting patient/family treatment preferences (e.g., a clinician may openly support the patient’s preference). Additionally, during in-consultation deliberation, some patients and FMs reportedly conferred about the decision together in a separate ‘exclusive’ discussion. Most participants confirmed that deliberation between the patient and family continued outside of the consultation, and was seen as beneficial. Deliberation was reported by some participants to be a lengthy process of ongoing, iterative, informal discussions about ideas, preferences, and feelings between the patient and family. 4.1.4. Family involvement in the ‘decision’ stage Family involvement in this stage ranged from no involvement to dominance, however most participants reported that the patient made the final decision. Some clinicians surmised that typically patients and FMs discussed information and deliberated about the decision together, but the patients retained authority over the decision and made the decision themselves with the family as supporters. Based on participants’ reports, four overarching ‘types’ of family influence over decisions emerged, which ranged from no influence through to dominance. 4.1.4.1. No family influence: Oncologist and/or patient controlled decision-making. A small number of participants reported situations where the family (while present in the consultation) had no influence 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 influence through proximal actions. A large number of participants described situations where the family’s influence 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 patient’s autonomous choices, and showed confidence in the patient’s decision-making abilities while censoring their own opinions. Additionally, a large number of FMs reportedly assisted and facilitated the decisionmaking 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 influenced, the decisionmaking process. 4.1.4.3. ‘Shared’ patient and family influence. A large number of participants described situations where decisions were ‘shared’ among the patient, family, and potentially oncologist. In these situations, the FM’s influence 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



R. Laidsaar-Powell et al. / Patient Education and Counseling xxx (2015) xxx–xxx Table 2 Demographic and clinical characteristics of patients and family members. Characteristic

Patients (n = 30)

Family members (n = 33)

Age Mean [Range]

56 [30–80] 54 [28–81]

Sex Male Female

15 15

13 20

Education Year 12 or below University degree TAFE certificate/diploma

11 13 6

13 13 7

Marital status Married or living with partner Widowed Separated or divorced

26 2 2

31 2 0

Primary cancer diagnosis Lung Genitourinary Breast Gastrointestinal Renal Other

7 7 10 2 1 3

9 8 7 4 2 3

1 7 4 4

2 8 5 3

4 9 1

4 9 2

Current treatment stage of patient Discussing treatment options Receiving active treatment Clinical Trial Discussing treatment options after recurrence Receiving treatment after recurrence Completed active treatment Palliative care Family member type Wife/Female Partner Husband/Male Partner Son Daughter Sister Other (Friend, brother-in-law, great-aunt)

15 10 2 1 1 4

support, these FMs provided their own opinions/preferences for the decision. Clinicians who described ‘shared’ patient and family influence typically maintained that—although the process was shared between the patient and family—‘the patient should, at the end of the day, retain final decision-making control’. The sharing of decisions was often assumed by spouses/partners rather than distant family (e.g., aunt) or friends. 4.1.4.4. Dominant family influence. Several clinicians, but only a minority of patients and FMs, described situations where the family made the decision and the patient assumed a passive role. Many clinicians viewed family dominance over decisions with suspicion, but of the few patients and FMs who described these dynamics, most appeared comfortable with family control. Some of the reasons for family-dominant decision-making described by patients and FMs were: (i) the FM was perceived to have greater medical knowledge than the patient, or (ii) the patient was considered to have limited understanding of English language. 4.1.5. Post decision deliberation A few FMs and patients reported that they continued to discuss the decision after it was made (but was not irrevocable), such as commencement of chemo- or radio- therapy. They reported continued deliberation about whether it was the ‘right’ decision,

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and one patient-family pair reported changing the decision once they discussed it more at home. 4.2. Attitudes towards family involvement in the decision-making process: Balancing patient authority and the rights of the family Participants were asked to comment on their views about family involvement in decision-making. Mostly, participants indicated that they favoured family involvement in the decisionmaking process to some extent; however, most also highlighted that the patient should have final authority over the decision. For some participants, there seemed to be a balancing of patient authority with family inclusion. See Table 4 for illustrative quotations. 4.2.1. Patient authority over decisions Almost all clinicians, patients, and FMs stated that the patient should be the one with the final say over the decision; however reasons for these views varied. Many clinicians stated that patient wishes should be paramount and that patients should retain ownership of decisions. Clinicians felt a ‘responsibility’ to the patient and discussed the importance of patient consent, sometimes noting they were guided by laws that protect patient confidentiality and autonomy. Many challenges of family involvement reported by clinicians related to situations where the family reportedly compromised the patient’s autonomy, for example by requesting non-disclosure of diagnosis, having treatment wishes that conflicted with the patient’s, or trying to exert undue influence. Many patients and FMs commented that it is the patient’s body that is affected and thus the patient should make decisions because they are affected most. A few FMs also noted a fear that if something went wrong, they would feel responsibility or regret, and thus desired the patient to have decision-making authority. 4.2.2. The rights of the family to be involved in decision-making Despite the widely-held view that the patient should retain decision-making authority, many participants also acknowledged 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, uncertainty, and stress of an unwell loved one with minimal support) and practically (such as assisting the patient with receiving treatment, making lifestyle changes, and the impact of the caregiving role on the FM’s employment). Several participants noted that some specific situations called for greater family involvement. For example, a few participants noted the importance of including partners in decisions which: (i) may affect fertility and sexuality, given the direct impact on the partner or (ii) when they and the patient had young children at home, since the partner reportedly acted as a “representative” of the wider family unit. Additionally, some participants noted the need for family to be involved in end-of-life decisions, given that the family unit may have limited time left together and may be assuming a large proportion of the caregiving responsibilities for an increasingly unwell patient. 4.2.3. Balancing patient authority with family involvement Overall, many participants felt that family involvement in decision-making does not necessarily erode patient authority. In fact, some indicated that family involvement may enhance patient involvement and autonomy in decision-making. Every clinician acknowledged the valuable informational support (e.g., asking questions, taking notes, recalling information) provided by FMs to the patient. Clinicians described other family roles perceived as



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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 influence: Oncologist and/or patient controlled decision-making Family influence through proximal actions Shared family influence Controlling family influence 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 influencing family involvement

Patient factors Family factors Cultural factors Relationship factors Decision factors

enhancing patient involvement in decisions, such as emotional support, advocacy (e.g., bolstering patient confidence to share views, raising issues on the patient’s behalf) or playing devil’s 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 patient’s 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 clarified. 4.3. Factors influencing family involvement All clinicians described the variability of family involvement in decision-making, influenced 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.

4.3.2. Family factors 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 influence 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 patient–family relationship dynamics influenced the decisionmaking process. 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., commencing, changing, or ceasing treatment; treating disease recurrence; end-of-life decisions) or complex (e.g., many treatment options; no clear choice when weighing up the benefits and harms of options). Family were also reportedly more involved when the decision directly involved them such as treatments affecting the patient’s sexual function or fertility, or requiring a high degree of family assistance (such as transporting and accompanying the patient to treatments).




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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 member’s role is to . . . try and find out as much information as they can about the different options. I think in that situation where a person’s 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 member’s role is to get the specifics 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 There’s 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 we’ve got to do”, or “I’m not happy”. So they’ll normally turn away from the doctor and to one another- - - Nurse We’ve sort of looked at one another before making the decision together, every decision has been one of mutual agreement . . . See when we’ve both been there it's very easy to make the decision because we’re both getting the information and we sort of look at one another and go’ yeah’- - - Patient (clinic) I deliberately tried to play devil’s 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 wasn’t 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 influence: 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 influence through proximal actions I didn’t want to influence [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 we’re 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 [patient’s] 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 wouldn’t have influenced 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 influence 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 what’s best. Obviously, the patient has the final say, but patients rarely want to go against the wishes of their significant 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. We’ve both got to be at ease with it- - - Patient (clinic) Dominant family influence I run the ship . . . If I said to [Patient] you need to jump off the Harbour Bridge because that will fix 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 don’t 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 you’ve 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 To our knowledge, this is the first study to qualitatively and concurrently examine the decision-making attitudes and experiences of cancer patients, FMs, and clinicians; providing comprehensive, triangulated insight into a relatively unexplored area of decision-making. It provides new and in-depth insights into the

specific behaviours of family across several stages of decisionmaking, 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 conceptualisation. Namely, family may be involved across many stages of decision-making, within and outside, as well as before



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Table 4 Balancing patient authority and the rights of the family: Illustrative quotations. Patient as priority Increasingly it’s been made clear to us by privacy laws, the patient is our main concern. You certainly answer the relative’s questions and explain things to them. It’s 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, it’s the patient that will finally sign the paper and say, “Yes, I’m having this done . . . the bottom line . . . it’s got to be the patient’s 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. You’re the one that has to get through the treatment . . . I think it’s 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 it’s her health, her body, her life- - - Family member (advocacy group) The rights of the family I think it’s 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 patient’s 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 it’s 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 we’re all together, we’re not individuals, we’re 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 first 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 . . . We’ve 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 we’ve 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 influence 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 we’ve 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) It’s primarily the patient’s decision, but the patient, I know her well, will definitely be influenced 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 individual’s health decisions or any decisions are their own and I guess people around them can influence 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 don’t feel like I can make another decision”. So it really depends where they’re at- - Nurse

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 finding 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 findings, it may be beneficial for clinicians to be made aware of the nature of ‘at home’ decision-making and, if feasible and desired, allow sufficient 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 family’s 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 family’s supportive and facilitative involvement enhanced the patient’s autonomy rather than eroded it. These findings provide further empirical support for Epstein’s 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 patient’s 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 patient’s 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 influence 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 findings 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 influenced by their legal and professional duties, which in Western countries such as Australia, promote patient autonomy and provision of informed consent [26]. However, this individualistic approach to patient autonomy does not appear to align with patients’, FMs’, and some clinicians’




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Table 5 Characteristics influencing 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 significance of that decision. Your generation comes into it and ethnicity comes into it. They all impact- - - Oncology Nurse Patient factors I think it’s 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 finally, those who either have a mental health disorder or severe anxiety or depression. So I guess it’s 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, it’s much more likely that the family is going to play a bigger role in decision-making, where you’ve 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 . . . – there’s this real feeling of keeping them alive. When it’s an elderly lady and their niece comes along, and that’s sort of a bit more remote, then you tend to find the decisions are different, and the conversation is a little bit different- - Oncology Nurse Decision factors I’m not sure that it’s very different than any other big life decision. So most people, for example, who buy a house won’t just go to a real-estate agent by themselves, go off, look at the first 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 . . . It’s very similar I think. So decisions that are big, complex decisions with long-term ramifications, you need help. I think we all need to be able to . . . give ourselves some certainty that we’re making the right decision, and it’s hard to do that in isolation- - - Medical Oncologist

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 patient–family decision-making. Few participants experienced no family involvement or family dominance. These findings 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 decisionmaking process. Some clinicians, patients, and FMs reported believing that certain situations may require greater family influence 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 findings highlight the need for clinicians to be flexible 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 influenced 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 influence 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, patient–family relationship characteristics, and characteristics of the decision itself. Given the wide, and often overlapping, number of factors which may influence preferences for family involvement, it is important that clinicians clarify preferences for the extent of family involvement and remain flexible 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 findings may be biased to reflect 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 reflect those of more interested patients and FMs. Finally, our study findings 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 family behaviours throughout the decision-making process such as researching treatments, asking questions, recalling information,



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and acting as a sounding board often commencing before consultations and continuing after a decision has been made. However, whilst FMs may make a significant 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 influence the level of family involvement. Given the limited description of family in current decision-making theory, our research group plans to integrate these findings into a conceptual framework describing family involvement in decision-making. 6.1. Practice implications The findings 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 flow based on the evolving nature of the illness, and variety of other influencing factors. Therefore, it may be beneficial if clinicians ascertain participant preferences for family involvement in decision-making and remain flexible and open to the many, varying ways family can be involved. Clinicians may also benefit by understanding that, when family are involved, the decisionmaking 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 decisionmaking 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] References [1] S. Eggly, L.A. Penner, M. Greene, F.W. Harper, J.C. Ruckdeschel, T.L. Albrecht, Information seeking during bad news oncology interactions: question asking by patients and their companions, Soc. Sci. Med. 63 (2006) 2974–2985. [2] R.L. Street, H.S. Gordon, Companion participation in cancer consultations, Psycho-Oncol. 17 (2008) 244–251. [3] R. Laidsaar-Powell, P. Butow, S. Bu, C. Charles, A. Gafni, W. Lam, et al., Physician–patient–companion communication and decision-making: a systematic review of triadic medical consultations, Patient Educ. Counsel. 91 (2013) 3–13. [4] R. Gilbar, O. Gilbar, The medical decision-making process and the family: the case of breast cancer patients and their husbands, Bioethics 23 (2009) 183– 192. [5] K. Pardon, R. Deschepper, R.V. Stichele, J.L. Bernheim, F. Mortier, N. Bossuyt, et al., Preferences of patients with advanced lung cancer regarding the involvement of family and others in medical decision-making, J. Palliat. Med. 13 (2010) 1199–1203.

[6] F. Gonçalves, Á. Marques, S. Rocha, P. Leitão, T. Mesquita, S. Moutinho, Breaking bad news: experiences and preferences of advanced cancer patients at a Portuguese oncology centre, Palliat. Med. 19 (2005) 526–531. [7] C. Schäfer, K. Putnik, B. Dietl, P. Leiberich, T.H. Loew, O. Kölbl, Medical decisionmaking of the patient in the context of the family: results of a survey, Support. Care Cancer 14 (2006) 952–959. [8] B.J. Davison, M.E. Gleave, S.L. Goldenberg, L.F. Degner, D. Hoffart, J. Berkowitz, Assessing information and decision preferences of men with prostate cancer and their partners, Cancer Nurs. 25 (2002) 42–49. [9] D.W. Shin, J. Cho, D.L. Roter, S.Y. Kim, S.K. Sohn, M.S. Yoon, et al., Preferences for and experiences of family involvement in cancer treatment decision-making: patient—caregiver dyads study, Psycho-Oncol. 22 (2013) 2624–2631. [10] H.L. Shepherd, M.H. Tattersall, P.N. Butow, Physician-identified factors affecting patient participation in reaching treatment decisions, J. Clin. Oncol. 26 (2008) 1724–1731. [11] U. Boehmer, J.A. Clark, Married couples’ perspectives on prostate cancer diagnosis and treatment decision-making, Psycho-Oncol. 10 (2001) 147–155. [12] B.A. Hilton, Family decision-making processes about early stage breast cancer treatment, Canad. Oncol. Nurs. J. 4 (1994) 9–16. [13] G. Hubbard, N. Illingworth, N. Rowa-Dewar, L. Forbat, N. Kearney, Treatment decision-making in cancer care: the role of the carer, J. Clin. Nurs. 19 (2010) 2023–2031. [14] J. Öhlén, L.G. Balneaves, J.L. Bottorff, A.S. Brazier, The influence of significant others in complementary and alternative medicine decisions by cancer patients, Soc. Sci. Med. 63 (2006) 1625–1636. [15] C.E. Reust, S. Mattingly, Family involvement in medical decision making, Family Med. 28 (1996) 39–45. [16] G.A. Bowen, Naturalistic inquiry and the saturation concept: a research note, Qual. Res. 8 (2008) 137–152. [17] C. Charles, A. Gafni, T. Whelan, Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango), Soc. Sci. Med. 44 (1997) 681–692. [18] C. Charles, A. Gafni, T. Whelan, Decision-making in the physician–patient encounter: revisiting the shared treatment decision-making model, Soc. Sci. Med. 49 (1999) 651–661. [19] G. Elwyn, A. Edwards, P. Kinnersley, R. Grol, Shared decision making and the concept of equipoise: the competences of involving patients in healthcare choices, Brit. J. Gen. Pract. 50 (2000) 892–899. [20] F. Légaré, S. Ratté, K. Gravel, I.D. Graham, Barriers and facilitators to implementing shared decision-making in clinical practice: update of a systematic review of health professionals’ perceptions, Patient Educ. Counsel. 73 (2008) 526–535. [21] G. Makoul, M.L. Clayman, An integrative model of shared decision making in medical encounters, Patient Educ. Counsel. 60 (2006) 301–312. [22] J. Ritchie, J. Lewis, C.M. Nicholls, R. Ormston, Qualitative Research Practice: A Guide for Social Science Students and Researchers, Sage, 2013. [23] D.Z. Meyer, L.M. Avery, Excel as a qualitative data analysis tool, Field Methods 21 (2009) 91–112. [24] R. Laidsaar-Powell, P. Butow, S. Bu, A. Fisher, I. Juraskova, Oncologists’ and oncology nurses’ attitudes and practices toward family involvement in cancer consultations, Eur. J. Cancer Care (2016). [25] R. Epstein, Whole mind and shared mind in clinical decision-making, Patient Educ. Counsel. 90 (2013) 200–206. [26] I. Kerridge, M. Lowe, C. Stewart, Ethics and Law for the Health Professions, 4th ed, NSW The Federation Press, Annandale, 2013. [27] R. Gilbar, Family involvement, independence, and patient autonomy in practice, Med. Law Rev. 19 (2011) 192–234. [28] United States Government. Patient Protection and Affordable Care ActProgram to facilitate shared decision making. 42 US Code 299b–36 2010. [29] Commonwealth Government of Australia. Carer Recognition Act. No 123, 2010 2010. [30] G.S. Hobbs, M.B. Landrum, N.K. Arora, P.A. Ganz, M. van Ryn, J.C. Weeks, et al., The role of families in decisions regarding cancer treatments, Cancer 121 (2015) 1079–1087. [31] M. Sekimoto, A. Asai, M. Ohnishi, E. Nishigaki, T. Fukui, T. Shimbo, et al., Patients’ preferences for involvement in treatment decision making in Japan, BMC Family Pract. 5 (2004) 1.


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