TITLE: Shared decision-making at the end of life: a focus group study exploring the perceptions and experiences of multi-disciplinary healthcare professionals working in the home setting.

SHORT TITLE: Shared decision making at the end of life

Word Count: Excluding quotations, references and tables 2926 words [Max 3000]

Author details

Dr. Paula Brogan, Lecturer in Counselling, School of Communication, Ulster University,

Northern Ireland

Dr Felicity Hasson, Senior Lecturer, Institute of Nursing and Health Research, School of

Nursing, Ulster University, Northern Ireland

Professor Sonja McIlfatrick, Head of School, School of Nursing, Ulster University, Northern

Ireland

Correspondence author:

Dr. Paula Brogan, Lecturer in Counselling, School of Communication, Newtownabbey,

Belfast BT37 0QB. Email: pm.brogan@ulster.ac.uk

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ABSTRACT

Background Globally recommended in healthcare policy, Shared Decision- Making (SDM)

is also central to international policy promoting community palliative care. Yet realities of

implementation by multi-disciplinary healthcare professionals who provide end of life care in

the home are unclear.

Aim To explore multi-disciplinary healthcare professionals perceptions and experiences of

Shared Decision-Making at end of life in the home.

Design Qualitative design using focus groups, transcribed verbatim and analysed

thematically.

Setting/Participants A total of 43 participants, from multidisciplinary community-based

services in one region of the UK were recruited.

Results Whilst the rhetoric of Shared Decision-Making was recognised, its implementation

was impacted by several interconnecting factors, including 1) conceptual confusion regarding

Shared Decision-Making, 2) uncertainty in the process and 3) organisational factors which

impeded Shared Decision-Making.

Conclusions Multiple interacting factors influence implementation of Shared decision-

making by professionals working in complex community settings at the end of life. Moving

from rhetoric to reality, requires future work exploring the realities of Shared Decision-

Making practice at individual, process and systems levels.

Abstract word count: 166 (250 max)

KEYWORDS: Shared decision-making, decision-making, palliative care, end-of-life care,

home care, community, multidisciplinary, focus group.

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KEY STATEMENTS (1-3 bullets for each)

What is already known about this topic?

Shared decision making has the potential to improve the quality of the decision-

making process for patients and ultimately patient outcomes across a range of

health care settings.

Despite being advocated in international health care policy, research suggests it is

not widely implemented in practice.

Empirical evidence has focused on the acute and hospice setting highlighting a

number of barriers, with little research exploring the multi-disciplinary health care

perspective in the community context at end of life.

What this paper adds?

Implementation of a SDM process is influenced by several interacting factors

which exist at personal, contextual and organisational levels.

Significantly, whilst recognising potential for SDM to enhance the quality of

decision making in the home setting, conceptual confusion about SDM was a key

factor which undermined its implementation by multidisciplinary healthcare

professionals.

Uncertainty about how decisions might be shared with patients and families in the

end of life context, paralleled with issues in coordination of care within a multi-

disciplinary framework and impacted SDM implementation and participation by

community healthcare professionals.

Implications for practice, theory or policy?

This paper provides an insight into the complex interdisciplinary community

context in which palliative care and SDM are delivered.

The successful implementation of SDM requires understanding of SDM as a

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discrete decision-making approach, with guidance on timing, initiation and the role

of multi-disciplinary professionals in this process.

Systems of care delivery which enable development of trusting inter-professional

relationships and complex interpersonal communication are needed to support

SDM and empower patients and families at the end of life.

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BACKGROUND

Globally there has been a movement towards active patient involvement in their medical and

care decision- making [1, 2, 3, 4], leading to the term shared decision-making (SDM)

becoming increasingly embedded in practice for multidisciplinary healthcare professionals

(HCPs) [5, 6, 7]. Defined as a process involving the patient and provider sharing preferences

and evidence to reach agreement on treatment [8], SDM is composed of several concepts [9]

(see table 1) and has been labelled as “the pinnacle of patient centred care” [10;780]. It is

advocated across clinical settings [11] including palliative care [12] and linked with quality

of decision-making experience for patients [13], family involvement [14] and rationalisation

of services for healthcare providers [3, 15]. However, while theoretically SDM places the

patient at the centre of the process, studies show barriers impacting upon their participation

[16] and questions have been raised regarding professional implementation into clinical

practice [17, 18], including palliative care [19].

< Insert table 1 here>

Despite the centrality of community contexts within international policy for palliative care

provision [20], the vast majority of SDM research has been conducted in hospital and clinical

settings and focused primarily on the self-reported experience of doctors working there [21].

A dearth of studies have explored the diversity of SDM experience among multi-

disciplinary professionals such as General Practitioners (GPs), Community nurses (DNs),

Specialist Palliative Care Nurses (SPCN) Allied Healthcare Professionals (AHPs) or social

workers, who provide palliative care in the family home at the end of life and have multiple

opportunities to engage in a shared process of decision-making [14, 22, 23].

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Whilst some research has examined an inter-professional approach to SDM at a micro

(individual), meso (health care teams) and macro (broader polices and social contexts) levels

[24, 25, 26], studies conducted in the complex home environment are rare [14, 22]. Previous

findings suggest SDM is impeded by training deficits for HCPs [27], practical barriers

integrating SDM into clinical practice [28, 29], uncertainty about difficult conversations [22,

30, 31], in end of life contexts [32] and professional doubts about its usefulness [33]. As a

consequence, inconsistent engagement with SDM by HCPs has been reported in clinical

encounters [16, 34, 35], with subsequent implications for patient [36, 37, 38] and family

participation in crucial end of life decision-making [39, 40, 41, 42]. With the majority of

patients expressing an unfulfilled desire to remain in their own homes at the end of life [43],

the international imperative for home-based palliative care [20] and unprecedented pressures

on these services globally (44), more needs to be understood about how multi-disciplinary

healthcare professionals who provide home care, share decisions with patients and families.

The purpose of this study was to investigate how community-based HCPs perceived and

experienced a shared process of decision-making in the complex context of the family home

at the end of life. It formed one phase of a large multiple case study which explored the SDM

process.

METHODS

Design and setting

This study adopted a qualitative focus group (FG) approach [45]. Commonly used in

international palliative care research [46, 47, 48], FG method was chosen to stimulate

discussion and expression of diverse perceptions and experiences of SDM among

professionals providing palliative care in the home setting [49]. Ethical approval was

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obtained from the Office of Research Ethics Committees NI (REF: 12/NI/0081) and research

governance granted by participating National Health Service (NHS) Trusts.

Sampling

A purposive sample of participants were identified through gatekeepers and recruitment

presentations [50], based on the following prerequisites; (1) qualified health and social care

professionals (2) engaged in the delivery of home-based palliative and end of life care to

patients and families. All participants received a letter of introduction, information sheet and

consent form. From 54 HCPs approached, 43 agreed to participate, the reasons for non –

participation were related to work and leave arrangements. The majority of participants were

female with an average age of 47 years (see table 2). Participants represented disciplines of

community nursing, specialist palliative care nursing, general practice, allied healthcare

professions and social work. Most participants were GPs (n=14) and findings indicated

extensive practice experience across participants with an average time in practice of 22.6

years.

Insert Table 2 here

Data collection

Data was collected between November 2013 and February 2014 from one health and social

care Trust in one region of the UK. Written consent obtained from all participants was re-

confirmed verbally prior to data collection. Eleven homogeneous focus groups [51] were

conducted. These groups were undertaken in the participants’ workplace, lasted 30-60

minutes and were facilitated by an experienced qualitative researcher (PB). Group discussion

followed a semi-structured interview guide (see Table 3).

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Insert Table 3 here

The guide was informed by a review of SDM literature, findings from a previous phase of the

case study and concepts of SDM in palliative care (19) (Figure 1). These covered several

themes: (1) context in which SDM occurred (2) participants or actors involved (3) decision

making process and (4) outcomes of SDM. Open questions elicited deep and rich data

around participant experience, whilst facilitating emergent data and prompts were used to

encourage more in-depth responses [51].

Insert Figure 1 here

Data Analysis

As part of a larger multiple case study design, the focus groups enabled a progressive focus

on HCP experience of SDM [52] and analysis was driven by the needs of the larger study

[49]. Therefore, focus group interviews were digitally recorded, transcribed verbatim and

subjected to an iterative process of thematic analysis for multiple case studies by the authors

[53]. This involved a review of transcripts (PB) and blind re-reading and coding by a second

researcher (FH), before refinement of emerging themes and sub-themes in discussion with the

research team. Data matrices of emerging themes within and across focus groups were

constructed with supporting extracts (See Table 4).

Insert Table 4 here

RESULTS

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Participant’s perceptions and experiences of SDM related to three key themes. These were

found to undermine SDM initiation and its implementation and included: (1) Conceptual

understanding of SDM, (2) Uncertainty in SDM process and (3) Organisational factors which

impeded the process of SDM.

Conceptual understanding of SDM

Whilst SDM was widely advocated across professional groups, there was considerable

conceptual confusion about what is was, who should initiate it, who should be involved and

how it should be implemented. For example, responses indicated that concepts such as

patient-centred care and SDM were viewed by HCPs as mutually exclusive activities. Indeed

HCP’s traditional patient-centred focus led to a common interpretation that SDM had to be

led by the patient and underpinned solely by their values, such as perceived openness to end

of life (EoL) conversations. As one AHP noted:

“I would tend to take my lead from them [patient], if they are not open about things

[End of life issues], I would tend not to be.” [P2, AHPFG]

Consequently, focused on the patient as the decision-maker, SDM was only possible when

patients explicitly opened the conversation. In addition, even where HCPs identified

benefits from family participation in discussions, if the patient did not explicitly involve

them, HCPs tended to accept the patient’s perceived preference unequivocally, without

further exploration. A GP explained:

“…you kind of suggest - what might be the problems if we don’t communicate?...But

if they [patient] say’s they don’t want to, then you have to just leave it at that point .”

[P1, FGGP2]

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Overall, commitment to the philosophy of patient-centred care and an associated acceptance

of the primacy of the patients’ autonomy in decision-making, reportedly blocked HCPs from

sharing information with family, effectively excluding them from deliberation and deciding

activities as key care-providers:

“…because it is patient-centred. I mean if the patient…basically wants that

information to be given to family…If you have got that permission that breaks a lot of

barriers.” [P2, FGGP1]

Uncertainty in the SDM process

Uncertainty surrounding the process of SDM within the end of life context was a key theme

across groups and linked to several perceived issues, such as (1) an unpredictable illness

trajectory, (2) lack of patient and family awareness of the end of life context of care and (3)

the patient’s openness to a SDM approach. Uncertainty underpinned the reasons HCPs gave

for their lack of involvement in SDM and influenced their behaviour around communication

and relationship development.

Across focus groups, the perceived unpredictability of the end of life trajectory provoked

HCPs to respond in different ways. Specialist Palliative Care nurses for example, described

how they remained watchful for evidence of anticipated deterioration in the patient’s health,

using emerging change as a trigger for early exploratory conversations about implications

and options to be decided upon. However, this approach was not universally adopted. Other

professionals explained their desire to spare patients or families anxiety, which led to them

avoid speculation on the development of illness until the change, its implications and options

for management were all clear. Commonly, responses from GPs articulated a reactive

approach. As stated:

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“I personally would tend to leave it and deal with things as they turn up, because …I

think why speculate about something that might or might not happen…” [GP1,

FGGP4]

This approach reduced opportunities for anticipatory care planning, because decision-making

discussions were responding to events, when the patient’s condition was already worsened

and the decision-making capabilities of patients and families were sub-optimal. Similarly,

rather than anticipatory care conversations with patient and family, social workers, most

community nurses and AHPs commonly focused their decision-making efforts on areas of

certainty such as the “bread and butter issues” of current care needs [SW 1, FGSW] , . This

meant that the initiation of SDM was delayed, reducing time for reflection and narrowing

options.

Whilst all professionals acknowledged the gravitas of end of life decision-making,

uncertainty about the patient’s or family’s awareness of approaching death provoked fear of

causing harm. Consequently, the majority of HCPs described a tentative approach to sharing

their assessment of deteriorating illness, discussing implications or making plans unless they

were confident about what the patient or family understood. Working closely within the

family home provided a unique opportunity to gain such understanding and whilst some

professionals were inhibited about raising end of life conversations with patients they knew

well, for most the perception of relationship provided the confidence needed to start

challenging discussions. One specialist nurse described:

“We get to know them [patients and families] very quickly…and they will ask you for

more and we can be a bit more truthful [when there is] a good relationship with

them.” [P3, SPCNFG]

Conversely, it was found that the absence of a real or perceived relationship undermined

professional confidence, so that participants erred on the side of caution by not discussing

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end of life issues and passing responsibility for such conversations to perceived experts, such

as the hospice nurses. As stated:

“Where the person knows they are dying but the family doesn’t…and nobody is

actually talking about it, I just think that is where they [Hospice nurses] have the

expertise…I refer to them and it is often for that kind of thing [communication about

dying].” [AHP, AHPFG]

Where decisions were necessary and where ambiguities existed about the patients’ desire for

a shared approach, GPs and specialist palliative care nurses particularly described how they

gauged a patients willingness to share decision-making by interpreting subtle non-verbal

cues. Significantly, in order to reinforce their own subjective interpretation and to bolster

their confidence before engaging in any discussion, HCPs frequently sought verification from

other familiar and trusted professional colleagues with whom they had an existing

relationship.

Organizational factors which impeded the process of SDM

Key interconnected factors relating to the organisational systems of care impeded SDM by

de-prioritising it, impacting on HCP confidence to engage in the process and underestimating

their own key role. These were (1) workload pressure and (2) the impact of a disconnected

context of care delivery and decision-making.

Specialist Palliative Care Nurses espoused an holistic role which contributed to SDM, but

contrasted this with perceived constraints for other HCPs:

SPCN2: “I think we as specialist nurses are looking at the whole picture, where a lot

of other professionals going in [just] looking at their individual area…”

SPCN3: “Yeah,…we have more time to do that because we are not task orientated…”

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[SPCNFG]

Task orientation due to workload pressure was echoed by other professional groups, so that

SDM was seen as a desirable, but luxurious therapeutic conversation: One social worker

captured this perception:

“Before you can really move on to [patient] aspirations for the last three weeks or

unresolved family business, you have to make sure that they are fed, watered and

clean.” [SW1, FGSW]

Consequently, SDM conversations were de-prioritised and opportunities were missed to

initiate meaningful discussions with patients or family members beyond immediate care

delivery.

Within the complex EoL context, all HCPs valued trusting relationships with professional

colleagues, which underpinned SDM. As one GP stated:

“I think it is confidence … We work really well if everybody keeps connected to each

other.” [P1, FGGP5]

Yet, the existence of large disparate professional teams, geographical disconnection and lack

of continuity of staff impacted on team working, undermining opportunities for inter-

professional communication and the development of supportive relationships which HCPs

relied upon to reduce uncertainty. Paradoxically, in a context where practitioners valued

trusting relationships, they frequently made decisions via telephone with professionals they

had never met and didn’t know. A specialist nurse summarised the experience of this:

“It [relationship development] takes a long time to build and then you are swooped

off and somebody else is in. Then they have to start from scratch and the GP’s are

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going, ‘I don’t know who this [new] girl is?” [P3,

FGSPCT]

Disconnected care provision also contributed to confusion about professional roles and

responsibilities for SDM. For example, a common focus on the physician as the key service

provider, led to questions over whose responsibility it was to, lead and coordinate decision-

making. So SPCNs and community nurses viewed the GP to be responsible, when GPs

themselves saw their role as being a facilitator to the community and specialist nurses leading

in such conversations. Consequently, many HCPs reported delayed or piecemeal information

exchange, suboptimal decisional support and missed opportunities for end of life care planning. One

specialist nurse summarised this:

“… one person seeing the patient and saying “well I think this should be happening”

and then another person seeing the patient and saying “no, I think this should be

happening” and then someone seeing the family and saying “Oh well, Johnny told us

this and Mary told us this…” and it promotes poor [professional] advice giving and

poor direction…” [SPCN6, FGSPCT]

DISCUSSION

The findings of this study emphasised the need to consider the inter-professional context

within which SDM occurs. Whilst the community professionals acknowledged the

theoretical benefits of SDM, in practice interconnecting barriers of conceptual confusion,

uncertainty in the EoL context and factors related to organisational context of care delivery

impeded its implementation. Conceptual confusion about SDM existed in all professional

groups studied and similar findings have been noted in the literature [9, 16]. However, the

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current study builds on our understanding of SDM in the community context for palliative

and provision and highlights important misconceptions which impact practice. A key

finding was that patient-centred care and patient-led decision-making were perceived by

HCPs to be mutually exclusive with SDM. For example, participants narrowly believed that

decision-making should be initiated by patients, whose preferences and values controlled the

process and the participation of family and others. Theoretically, this perception challenges

the often cited notion of SDM as the pinnacle of patient-centred care [10] and there is much

to be understood about how these concepts of ‘patient –led’ and ‘shared’ decision-making

interact.

In practice, the reliance on patient leadership and focus on patient-led decision-making

within the complex and dynamic EoL context of the family home, may over-estimate the

capacity of patients whose condition and ability to engage may be deteriorating quickly and

who are likely to need support in this process [17]. Simultaneously it underestimates the

crucial role of family and others who collaborate to provide care at home and are directly

impacted by decisions [40, 41]. This has implications for how multi-disciplinary HCP

education might integrate ideals of patient-leadership with notions of shared responsibility in

decision-making central to SDM [8] and raises further questions about how family needs for

information and participation in the complex interactive process of SDM may be facilitated

by the HCPs.

Responses indicated that in contrast to UK policy advocating SDM implementation [5, 6]

HCPs were disinclined to adopt a key role. Unpredictable illness trajectory, uncertainty

about patient’s knowledge and acceptance of the EoL and concern about undermining

patients’ coping strategies, were offered as reasons for HCP avoidance of SDM and these

findings supported previous work (16, 17, 20, 22, 32). Moreover, this study’s findings

underpinned the relevance and role of perceived ‘relationship’ with patients and others,

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which promoted confidence and counter-balanced uncertainty for HCPs, thus enabling the

mutually curious interaction characteristic of SDM [8, 9].

Echoing other studies where caseload pressure [33] and role ambiguity [34] have impacted

HCP engagement in SDM, this study builds understanding of how organisational issues

hampered SDM in practice. Findings suggested that operating in professional silos fostered

avoidance and task orientated practice hindered a holistic SDM approach being adopted.

The need to reduce professional silos is an issue repeated in the literature and cultures of

avoidance are reported elsewhere [32], but this study highlights professional recognition of

impact in terms of suboptimal, delayed and missed SDM opportunities, which sits at odds

with the overall ethos and philosophy of palliative and end of life care [44].

Concepts of SDM drawn from the literature [17], provided a useful basis from which to

explore HCP perceptions and experiences in the complex context of the home, but added

little understanding of how key elements interacted within a process of SDM. There remains

a need to understand the interactive processes which underpin SDM and the key role of

family. Moreover, whilst emerging multi-professional models of SDM may be well aligned

with the needs of research examining the role of this group [24,25], frameworks which can

translate SDM theory into practice are required.

Limitations

Limitations related to the mode of recruitment, reliance on self-report by HCPs, potential

dynamics of small group discussions [51] and the predominantly female sample which

introduced the possibility of bias.

Implications for practice

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Despite SDM being widely endorsed by international policy (2), care organisations (5) and

academics (15), the realities of implementation remain a concern. Education for HCPs is

needed to address practice limitations, which continue to arise from conceptual confusion

about what SDM is, who should lead it and how patients and families might be empowered to

participate. Such training might also impact at an organisational level where there is a need

for HCPs to negotiate the lack of integrated teamwork which currently contributes to

uncertainty, inhibits the initiation of SDM and reduces patient and family choice.

CONCLUSIONS

The aim of this study was to explore multi-disciplinary health care professionals’ perceptions

and experience of SDM in the community setting at the end of life. In contrast with

international healthcare policy promoting SDM, findings highlighted several factors

operating across professional groups and at individual, process and organisational systems

levels, which undermined HCP’s perception of their role and ability to initiate SDM, impeded

decision-making processes with patients, families and resulted in delayed or missed

opportunities for these to influence or plan their own care. Barriers, such as conceptual

confusion and uncertainty around implementation were similar to those reported in hospital

and other clinical sites, but the home context presented opportunities for counter-balancing

relationship development which supported SDM. Moving SDM beyond rhetoric requires

organisational systems which promote trusting inter-professional relationships; training to

support HCP understanding of SDM as an interactive process that embraces the complexity

of decisions co-constructed with patient and family members, with the skills needed to

practice it. Further research is needed to explore how HCPs might empower patients and

families to take active decision-making roles the end of life.

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ACKNOWLEDGEMENTS

The authors greatly appreciate the contributions from the health and social care professionals

who kindly agreed to participate in this research study.

ARTICLE NOTES

Declaration of conflicting interests: The Authors declare that there is no conflict of interest.

Funding: The author(s) received financial support for the research from the Department of

Education and Learning (DEL).

Author contributions: All authors have agreed on the final version and meet the criteria as

specified.

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Table 1: Essential elements of SDM from Makoul and Clayman, 2006

Elements of Shared decision-making

1 Define/ explain the problem

2 Present options

3 Discuss pros and cons

4 Incorporate patient values and preferences

5 Discuss patient ability/self-efficacy

6 Provider knowledge/ recommendation’s

7 Check/ clarify understandings

8 Make or defer decision

9 Arrange follow up

26

Table 2: Characteristic of focus group participants

Professional

group

No. in

attendance

Gender

M F

Mean age

(years)

Mean years

in practice

Previous

training

in SDM

Community

nurses

12 1 11 47.6 26 0

GPs 14 7 7 50.6 18 0

Social

workers

6 0 6 48 21 0

AHPs 6 0 6 40.6 22 0

Specialist

nurses

5 0 6 48.3 26 0

27

Table 3: Semi structured topic guide of the focus group interviews

Topic area Questions

Context 1. What do you understand by the term Shared Decision Making?

2. What influencing factors have you experienced which affect the

process of SDM for HCPs working in the community context?

Why?

Actors 3. As a HCP [insert professional group here], what is your role in

SDM in community EOL situations?

4. What factors affect your ability as a [insert professional group here]

to engage in SDM?

5. Who do you think should be involved in SDM in the family home?

6. What is your understanding of the role of other professionals in the

decision-making process? Where does this understanding arise?

Decision

making

process

7. Can you give examples of how you have been engaged in the

process of SDM?

8. How have you learned about SDM?

9. In your experience, what helps or impedes you when applying the

principles of SDM with patients or families at EOL?

Outcomes 10. What is your perception of an outcome from SDM?

11. Can you give an example of how SDM contributed to patient choice

in your experience?

12. What is your perception of the role of family in shared decision

making in the home environment? Is there anything else you want

to add or develop from the discussion?

28

Table 4: Data Matrix showing theme development around one theme: Organisational factors as barriers to SDM

Key: GP= general practitioner; AHP = Allied Healthcare Professional; DN = community nurse; SPCN = Specialist Palliative Care Nurse; SW = Social worker

HCP focus group

Data Initial code Emergent theme Overarching theme

GP “you know meetings are a bit of a novelty for anything really. How do you schedule a meeting with doctors when our time is not our own?” [P1, FGGP3]

No time to meet colleagues

Workload pressure as CONTEXTUAL issue for communication

Contextual/Organisational

factors as barriers to

SDM PROCESS

AHP “earlier referrals to OT would be good” [P3]

“If you know they are dying…you can plan well ahead and it can make an awful difference in getting specialised equipment. But we don’t often have that option, because there is not enough time [from referral].” [P6, FGAHP]

Late referral - no time to discuss and plan with patients

Inter-professional communication as CONTEXTUAL issue for deliberation and planning

DN “You know you have a morning’s work to do and they [patients] start in to a big ‘what’s going to happen to me?’ conversation. You have to step back and take time with them – but time management is a problem…You still have 9 or 10 calls to do and feel pressurised…” [P3]

“Or they are talking to you and you are looking at the clock on the wall.” [P4, FGPCLN3]

No time to hear patient’s concerns

Workload pressure as CONTEXTUAL issue for initiation/completion of SDM

SPCN “…because of staffing levels, you know district nurses can be up to their eyes as well, and not just have the time to lift the phone…” [P1, FGSPCN]

No time to talk to colleagues

Workload pressure as CONTEXTUAL issue for information exchange

SW “Some people will come out of hospital and maybe they have 3 days. So you are in and out so fast you have very little contact.” [P2]

“yes, there are individual cases where we can’t prepare or do therapeutic work - you know ‘How would you like to live in your last days?’ or ‘What are your goals for the remainder of your life?’ - because literally they [patients] can be dead in 48hours…” [P5, FGSW]

Late referral - No time to talk about end of life goals.

Inter-professional communication as CONTEXTUAL issue for SDM

29

Figure 1. Concepts of SDM in palliative care based on empirical literature from

Belanger et al (2011)

30

Context

Physical environment

Culture

Stage of illness

Actors

People involved in process

Patient

Family/carer

HCPs

Decision-making process

Preference - elicitation

Information-sharing

Deliberation

Deciding

Outcomes of SDM

Decision

Satisfaction with process