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Research
Medical specialists’ motivations for referral to specialist palliative care: a qualitative study Emma Kirby,1 Alex Broom,1 Phillip Good,2 Julia Wootton,2 Jon Adams3
1
School of Social Science, The University of Queensland, St Lucia, Brisbane, Queensland, Australia 2 Palliative Care, St Vincent’s Hospital, Brisbane, Queensland, Australia 3 Faculty of Health, University of Technology Sydney, Sydney, New South Wales, Australia Correspondence to Dr Emma Kirby, School of Social Science, The University of Queensland, St Lucia Brisbane QLD 4072, Australia; [email protected]. Received 27 September 2012 Revised 5 November 2012 Accepted 19 November 2012 Published Online First 14 December 2012
To cite: Kirby E, Broom A, Good P, et al. BMJ Supportive & Palliative Care 2014;4: 277–284.
ABSTRACT Objectives The decision to refer a patient to palliative care is complex and often highly variable between medical specialists. In this paper, we examine medical specialists’ motivations and triggers underpinning decisionmaking around referral to palliative care in order to facilitate improvements in referral practices. Methods We completed semistructured, qualitative interviews with 20 referring medical specialists. Medical specialists were recruited from a range of specialties in a major metropolitan area in Australia. Participants were sampled through having referred at least one patient to the specialist palliative care unit during the previous 12 months. Analysis consisted of the framework approach augmented by NVivo 9 data analysis software. Key themes were identified and tested for rigour through interrater reliability and constant comparison. Results The major motivations/triggers identified were: (a) disease-based (eg, pain management and symptom control); (b) pre-emptive/strategic (eg, anticipation of need, preparatory objective); (c) crisis/parallel (eg, physical and psychosocial issues); and (d) team-based (eg, referral as policy/team strategy). Conclusions Referral to palliative care is motivated by a range of individual, interpersonal and organisational factors. In order to improve the care and quality of life of patients and family caregivers, further work is needed to develop streamlined practices that are sensitive to physical and psychosocial considerations, and patient/ family caregiver desires.
INTRODUCTION In the last decade, the process of referral to palliative care has garnered increasing attention in clinical and academic contexts.1–3 Timely referral to palliative care and the improved integration of palliative care teams early in the disease trajectory have been shown to enhance the well-
being of patients and family caregivers (FCGs).4–9 Moreover, a growing body of research points to the association between improved referral practices and increased life expectancy and quality in some contexts.10 11 Despite this, studies continue to identify significant variability in the referral process, according to a range of cultural, clinical and specialty contexts.1 12–14 Thus, although the process of referral to palliative care requires significant attention in terms of establishing best practice models, knowledge of the logics which underpin referral processes in clinical contexts remains limited. In this paper, we explore the experiences and perspectives of a range of medical specialists to better understand the complexities associated with motivations and triggers for referral to palliative care. For referring specialists, decisions around if, when and how to communicate referral to palliative care entail significant challenges.5 14 15 A range of existing studies have shown the difficulties specialists face in assessing the most appropriate time to refer,1 12 16–18 particularly juggling disease-related issues vis-à-vis psychosocial and relational factors.16 Decisions to refer, for example, can be delayed by discomfort on the part of medical specialists regarding ‘breaking bad news’,19–21 or patient and family resistance to acknowledging the end of life.17 22 Furthermore, processes and practices of referral have been shown to differ or vary according to clinical context.1 13 23 The existing evidence base indicates that referrals are motivated by multiple factors, rather than confined to those associated with symptom control.24 How these operate concurrently or are evident within certain clinical contexts remains unknown. The benefits of timely, well-
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Research communicated and considered referrals for patients and carers in terms of quality-of-life measures,9 11 survival estimates,10 as well as for improving patient and carer experiences,7 11 18 23 are well-documented. Existing research focused on the motivations and triggers for referral has found that in practice, specialists still tend to base referrals primarily on physical/disease attributes rather than psychosocial factors.8 25 26 The issue of ambiguity surrounding decisions about when and how to negotiate the ceasing of ‘active’ or lifeprolonging treatment (vis-à-vis a focus on quality of life) intensifies the focus on physical factors, where an emphasis on physical symptoms are more legitimately quantifiable and observable. Thus, medical specialists may be resistant to engaging with more psychosocial aspects of a patient and family’s profile. Such decisions are further complicated by the specialist’s knowledge or awareness of the scope of service provision (beyond narrow definitions of pain and symptom management) and/or availability of local palliative care services.6 14 17 27 Here, we focus on documenting the key motivations for referral to work towards a model of the various influences evident within a range of clinical contexts. We use ‘motivations’ as a broad term to describe the range of interplaying factors and triggers (both behavioural and clinical) which were considered by the specialists in their decision-making about referral; that is, a motivation as any factor which causes (or contributes to) the act or decision to refer. METHODS We used a qualitative inductive approach, using semistructured interviews in order to investigate the experiences and perspectives of medical specialists who refer their patients to palliative care.28 29 For the purpose of this study, we define ‘palliative care’ as the specialist care for those living with or dying from an eventually fatal illness or condition, focused on quality of life. Once local and national ethics approval was granted (Approval numbers: HREC #11/05; 2011000905), hospital records were used to identify specialists who had referred a patient to a specialist palliative care unit in a metropolitan area of Australia. The specialist unit which was the focus of this study consists of 30 inpatient beds and operates within a private hospital with a quota for government-funded beds and community-based palliative care. A total of 119 specialists were listed as referring during 2010, of which all were sent a letter inviting their participation. In all, 30 specialists responded, and 20 were selected and interviewed in 2011–2012, using a purposive strategy of maximum variation sampling. Given that our study followed an inductive approach, this strategy was employed to identify individuals across the spectrum of positions and perspectives, ensuring that a range of referring specialists was represented according to organisational context ( public/private), gender and medical specialty. Table 1 provides a summary of
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Table 1 Summary of participant characteristics Area of specialty
Number (n=20)
Organisational context
Number (n=20)
Medical oncology Radiation oncology Haematology
6 1 1
Public practice only Private practice only Public and private practice
10 7 3
Urology Surgical oncology Ear, nose and throat surgery Pancreatic and hepatobiliary surgery General medicine Geriatrics Palliative care
1 1 1
Gender: male Gender: female
10 10
1 1 2 5
the characteristics of participants. Specialists from medical and surgical oncology, urology, haematology, geriatrics, general medicine and palliative medicine were included in the sample. We included palliative care specialists working in other hospitals in the area who had referred their patients on to the specialist palliative care unit, so as to gain insight from those who also offer perspectives and experiences of receiving referred patients. All participants were experienced doctors with between 16 and 30 years in medical practice, and each of the specialists talked about regularly referring their patients to the specialist palliative care unit focused on in this study. Each participant completed a 45–60 min interview, conducted by AB and EK, and interviews continued until data saturation was reached.30 During the interviews, we focused on the following key themes: perceptions about the role of and basis for palliative care; experiences negotiating palliative care with patients and their families; experiences of managing the transition to palliative care; and facilitators/ impediments to referral.
Data analysis
We employed the framework approach of qualitative data analysis28 which takes place concurrently with the qualitative fieldwork. Specifically, we employed NVivo 9 software to systematically analyse the interview transcripts, using the following steps: (1) Familiarisation: the researchers reviewed the manuscripts. (2) Identification of framework: key themes were identified around which the data were organised. (3) Indexing: application of themes to text. (4) Charting: use of headings and subheadings to build up a picture of the data as a whole. (5) Mapping and interpretation: in which associations were clarified and explanations worked towards.30 Each research team member provided independent coding and analysis to cross-check codes/themes and to develop an overall interpretation of the data. Analytical rigour
Kirby E, et al. BMJ Supportive & Palliative Care 2014;4:277–284. doi:10.1136/bmjspcare-2012-000376
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Research Table 2
Summary of motivations and triggers for referral
Motivations/triggers for referral
Examples
Disease-based triggers
▸ ▸ ▸ ▸
Physical decline of patient Observable or measurable changes in prognostic factors Acknowledgement of specialist’s incapacity to continue to manage pain and relieve symptoms Futility of further technically ‘life-prolonging’ treatment
Pre-emptive/strategic motivations
▸ ▸ ▸ ▸
Family circumstances—identification of a lack of family capacity to provide care in the future Initiating patient/FCG–palliative care clinician relationships Preparing patient/FCGs emotionally for the future need for PC Avoiding or deferring uncomfortable conversations about dying
Crisis/parallel motivations
▸ ▸ ▸ ▸ ▸
Witnessing patients ‘falling over’ and ‘going downhill’ Family circumstances/dynamics Patient/FCG emotional distress related to terminal diagnosis Patient/FCG emotional distress related to other known factors Patient/FCG resistance/denial or lack of acceptance
Team-based triggers/motivations
▸ ▸ ▸ ▸
Established professional relationships with palliative care team Accessible and on-site palliative care teams/clinicians Working as a team, including input from nurses’ regarding referral Reputation of local palliative care clinicians
FCG, family caregiver; PC, palliative care.
was enhanced by constant comparison and searching for negative cases in code and theme development.30 31 FINDINGS Here we report the specialists’ experiences and perspectives on the motivations and triggers for referral. Each of the specialists offered insight into their own practices of referral as motivated or triggered by a combination of physical and psychosocial factors. Four key themes emerged from the interviews related to the motivations for referral: disease-based triggers, pre-emptive or strategic motivations, crisis-based or parallel motivations, and team-based triggers or motivations. A summary of key findings and examples is included in table 2. Disease-based triggers
The management of disease-based issues, including pain and symptom management, was cited as a principal motivation for referral by most of the participants (table 3). Accounts of the timing of referral (in terms Table 3
of the decision to initiate discussions with patient/ FCGs about referral to palliative care) were grounded in acknowledgement that the individual specialist and/or current clinical team was no longer able to provide adequate care in terms of pain and symptom management without specialised assistance. In reference to physical changes or shifts in the illness trajectory, the majority of participants told of patients ‘going downhill’ or ‘falling over’ as the trigger point for referral.14 The physical decline of a patient as a trigger for referral was frequently talked about in terms of shifting forms of treatment, where a focus on symptom management was viewed as within the expertise of palliative care. The interviews also highlighted referral to palliative care within ‘objective’ or clinical terms. That is, participants frequently described their decisions to refer using clinical terminology and by focussing attention on the physical aspects of disease progression. Such talk within the interviews is perhaps reflective of the style of the medicalised training and expertise of referring specialists. The majority of participants
Disease-based triggers
Participant
Example quotations: disease-based triggers
#18, Oncology
So we refer...mainly for patients who are getting towards the end of their metastatic disease process I guess, who are starting to need some community support, or whose symptom control is starting to be such that they need that sort of access to 24-hour a day nursing call information service. ...Often you’d start the thing [conversation about referral] with “where we are at the moment, because you’ve got a disease for which we have no treatment that will make any effective difference to.” ...I consider that it’s an important part of what you do, that you’re actually honest in telling them that you know, they have an infixable (sic) position, and there is no actual active therapy that will make a difference, apart from symptom control. Well I guess what I say is, “up until now we’ve been treating the cancer, but now what we’re going to do is look at treating the symptoms, so you know, this is palliative care in terms of dealing with what the cancer problems that arises, such as the pain or breathlessness, rather than just deal with the cancer”.
#10, Oncology
#8, Oncology
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Research Table 4
Pre-emptive/strategic motivations
Participant
Example quotations: pre-emptive/strategic motivations
#12, Haematology
My approach to the patients is to say to them, “you are on that pathway now, we’re still some way from the end, but it’s very important to get the palliative care providers involved early.” And so I emphasise with them that we don’t want to do this as a rushed thing at the last minute, we want the providers in early, so they get to know you, they get to know your family, they get to know your wishes, and they can build things in place. So it’s quite a deliberate policy, it’s a very early referral process, and it’s couched in those terms, so that it’s not threatening or intimidating to the patients, but is seen as part of how they will be cared for, and by their family, and is very positively received. And I say sometimes, “well, it’s good to meet them, because then you’re in the system, and if you start to run into problems, you’re name’s on the list”. And for me I mean, when I normally discuss palliative care, I just say for you know, a cancer treatment, “there are three main specialities, there’s chemotherapy doctors, radiotherapy doctors, and there’s symptom control doctors, and palliative care fall into that group”. Yeah look um, I often think that the term ‘palliative care’ is a handy one to have, because you can you know, it’s not as blunt as ‘end of life,’ or ‘terminal care.’ So we’ll often have to have that conversation [about referral] with the patient and their family, but probably we tend to avoid the really difficult issues, and sort of hope that the palliative care physician will deal with those things.
#11, Oncology #4, Radiation oncology #5, Surgery
described their own provision of palliative care for patients, usually only in the form of pain management, rather than any consideration of psychosocial support. Thus, the trigger for referral was described by some as the point at which their own expertise in pain and symptom control was insufficient (in line with an acknowledgement of the futility of pursuing any further life-prolonging treatment). Pre-emptive/strategic motivations
The majority of participants stressed the importance of timely or early referrals as good practice14 and that these timely referrals were primarily motivated by a desire to transition the patient and FCGs more gradually towards palliative care before a time of crisis. In contexts where specialists considered palliative care to be eventually inevitable, their accounts of what triggers a referral were embedded in ideals about preparing the patient and FCGs as best they could for the future need for palliative care (table 4). There was consensus among the participant group of the importance of referral to palliative care as a transitionary process. This type of ‘pre-emptive’ referral was viewed positively by most of the participants, highlighting referral to palliative care as a transitionary process as ideal, if not always practical. In accounts of the explanation of palliative care to patients, most participants couched it in positive terms. Moreover, for the most part, the specialists we interviewed spoke of describing palliative care (to patients and their families) as part of a multi-disciplinary care team, where palliative care clinicians were constructed as more equipped to manage complex patient and FCG issues as illness progressed. Referral to palliative care as transitionary or pre-emptive was also talked about—and observed by the interviewers in terms of the participants’ tone of voice and body language—as strategic. That is, there were clear benefits of earlier referral for the patient, the family and the specialist. One significant perceived benefit of pre-emptive referral for was related to the potential deferral or avoidance of 280
discussions about death and dying. Earlier referrals in this way may allow the referring specialist to sidestep potentially difficult or uncomfortable conversations with patients and FCGs about death and dying, and some participants acknowledged the discomfort they felt. Furthermore, two participants related conversations about death and dying as outside of their training and/ or remit insofar as they viewed palliative care clinicians as better suited (and equipped) to deal with patients and their FCGs as they approached the end of life. As such, referrals can be seen as motivated by a desire to avoid emotional or relational issues. Yet, for some of the participants, as we discuss below, a focus on psychosocial factors was central to referral practices. Crisis/parallel motivations
A key theme throughout the interviews was the crisis/ parallel motivations for referral (see table 5). That is, the need for symptom control in conjunction with a noticeable decline in patient/FCG emotional wellbeing, or decreased capacity to cope and continue the provision of care without specialised assistance. For the majority of participants, physical and psychosocial factors were considered as inextricably linked and were to be considered as going ‘hand-in-hand’ when assessing the need for referral. The example quotations shown in table 5 are typical of those of the referring specialists we interviewed. Referral to palliative care was reported to be motivated by quality of life and family care as well as an analysis of the patient’s disease profile, symptoms or comorbidities. However, some of the participants were more attentive to family structure and issues of daily living than others. For these participants, decisions to refer were primarily motivated by the assessment of the patient and family’s ability to cope, and/or the (lack of ) potential for continuing home care. The majority of participants offered detailed patient case accounts which more often than not included a knowledge (albeit sometimes basic) of the patient’s home care context, FCGs and family dynamics. In fact, some of the
Kirby E, et al. BMJ Supportive & Palliative Care 2014;4:277–284. doi:10.1136/bmjspcare-2012-000376
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Research Table 5
Crisis/parallel motivations
Participant
Example quotations: crisis/parallel motivations
#8, Oncology
The way I sort of put it [is] that it’s one, dealing with the problems, the symptoms the cancer causes, so it’s symptom control, and secondly, support mechanisms really, and practical support. Um, where you start to see um, impairment in activities of daily living, or if you feel there’s going to be predictable loss of ability to care at home. Ah, sometimes it’s as much the couple, as the individual. So you can have a very good coping, caring family with lots of infrastructure, where you might not refer them as early as somebody who is the primary carer for a demented wife. I brought a patient in two days ago, with some pain from his cancer, but he’s not coping. But the reason he’s not coping is because his brother-in-law just died a couple of weeks ago, and I think he and his wife had just unravelled. It’s the distress…the existential distress was his problem, and... that is where a palliative care service works very much for me, because he, there is this intermingling you know. So [PC specialist] is going to see him about that. But he’s a person who, if he walked in early next week for his next course of chemotherapy and he hadn’t had those issues, I wouldn’t refer him. But it really is symptom or emotional distress that are the trigger points for referral. I don’t refer patients because they’ve got a diagnosis of metastatic cancer, because many people...just aren’t ready for that. Those of us who have been medical oncologists for a long time, we don’t have any problem referring people to palliative care, but sometimes the patient doesn’t want that at the early stage, and that’s fine. [I can] say to them, “okay well obviously it’s getting difficult for you to manage at home, and your wife, I think we should start to get some palliative care services,” [but] sometimes they’re not willing to accept that, because that equates with the final stages of their illness, and it means that they’re you know, accepting that their condition is terminal.
#2, Urology
#17, Oncology
#17, Oncology #11, Oncology #8, Oncology
PC, palliative care.
participants stressed their individual focus on family details as a driving force in triggering referrals. We also heard of perceptions or experiences of patient/ FCG resistance or denial, where considerations of ‘readiness’ or acceptance of terminality (and palliative care as synonymous with terminality) were central to decision-making around referral. Thus, decisions around referral entailed a complex appraisal of both physical and psychosocial factors including (often both clinically and ethically difficult) prognostication, an understanding of family context and capacity to provide care, and an assessment of ongoing and evolving processes of emotional distress or acceptance. Team-based triggers/motivations
While the need for specialised pain and symptom management and psychosocial care were talked about as the two motivating factors for referral, these were often explained as enabled (or sometimes impeded) Table 6
by interdisciplinary communication and liaison (see table 6). The relationship between a referring specialist and local palliative care clinicians, the position of the referring specialist within a multidisciplinary team, or the reputation of local palliative care teams were all talked about as either motivating (or impeding) processes of referral. Some of the participants spoke of close working relationships with palliative care teams. In these cases, referrals were explained as embedded in a team-oriented approach to care, where the fluidity and ease of referral to accessible palliative care teams may avoid ‘late’ referrals, or those characterised by crisis. Moreover, for some of the participants, the presence and role of nursing staff was also a significant trigger for referral. Nurses were viewed by these specialists as having the potential to ‘pick up on’ patients in need of referral due to the time they potentially spend with patients (relative to the specialist). The palliative care physicians we interviewed also
Team-based triggers/motivations
Participant
Example quotations: team-based triggers/motivations
#13, Geriatrics
Yeah, they’ve been very good actually, but of course having them onsite is great, you can generally just go down and talk to them and say, “we’d like you to have a look at Mrs so-and-so...She looks like she’d be perhaps better managed now under your care.” Pall[iative] care referrals are often prompted by the nursing staff, who might suggest it... We have an excellent system which you don’t see very often, is that we work absolutely side-by-side and directly along with the oncologists. And the ward is joint, there’s a joint registrar, so the registrar will see the oncology patient with an oncology hat or a palliative care hat. So it’s very much an equal, an equal footing. Consultants throughout the rest of the hospital will refer patients on as well, if they think they need palliative care...So I’ll see them and then the oncologist will see them at the same time. I have a very poor professional relationship with the palliative care physician here, and that’s fairly widespread. And I’ll be honest about it, I used to refer to [the particular PC specialist] very early, and I found that [PC specialist’s] attitude, and comments to me, personally, as a doctor, belittling. And, as a consequence, with that behaviour, I’ve never referred [the particular PC specialist] a patient since. On the other hand, I’ve always valued the service over there [PC service]. So it’s a personal relationships thing, where they’ve provided a great service, and they’ve never questioned what you’re doing, or criticised you, whereas other people have, and I have nothing to do with those people.
#4, Radiation oncology #3, Palliative care
Specialty removed to preserve anonymity
PC, palliative care.
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Research talked about the positive impacts of close working relationships with referring specialists, highlighting the importance of shared care and inter-professional communication. A range of examples were offered by participants of both positive and negative professional and bureaucratic contexts which they explained as facilitators or barriers to the referral process. While there were many examples offered during the interviews which highlighted positive team-based dynamics as motivating or triggering referral, there were also (albeit less frequent) accounts of such relationships impeding referral processes. Thus, interpersonal and cross-disciplinary relationships seem to be highly significant in the process of referral to palliative care. Decisions around if, when and how to refer a patient are therefore further complicated and contextualised within a landscape of interpersonal and interprofessional dynamics. DISCUSSION The findings presented here provide timely insight into the day-to-day referral practices of a range of medical specialists. A key theme within the interviews was the multifarious factors impacting on the decision of when and how to refer a patient to palliative care. Discussions about referrals to palliation were considered by all of the specialists to be synonymous with ‘breaking bad news’19–21 and each were conscious to communicate the need for referral to palliation carefully. All of the specialists we interviewed were experienced in the delivery of a terminal (or life-limiting) diagnoses and/or poor prognoses, and offered detailed accounts of the process of communicating this news and shifting the dialogue towards referral. In doing so they revealed the potentially idiosyncratic nature of referral decision-making and the importance of the consideration of FCGs, particularly in the assessment of the capacity of a family to provide and manage care approaching the end of life. The timing of referral was talked about as a particularly difficult decision, based on a complex combination of factors, and influenced most significantly by the patient’s illness trajectory in line with the family’s capacity to cope with increasingly demanding care.14 In contrast with existing research,8 psychosocial factors including emotional distress or FCG caring capacity were offered by participants as a key motivation for referral (rather than the future need or current inability to control symptoms in isolation). This finding reveals a more nuanced and complex set of considerations for referring specialists, whereby the majority of those we interviewed drew upon their knowledge of individual patient/FCG contexts in conjunction with their assessment of prognosis. However, we note here that although psychosocial factors were often viewed as an important motivation for referral, the emphasis was largely placed on the patient/FCGs/ specialist team no longer being equipped to cope,
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rather than the scope of palliative care. That is, several referring specialists only talked about palliative care within the context of pain and symptom management, with little awareness of the wide range of services tailored towards the physical and psychosocial needs of patients and FCGs.14 26 32–35 As such, our findings serve as a reminder of the importance of needsbased consideration (for both patients and their families) which can be obscured by referrals when triggered or motivated by physical symptoms alone.5–7 16 23 Each of the specialists interviewed offered examples of negotiating referral that emphasised the parallel motivational factors for palliation as concurrently medical and psychosocial. There was less focus on the cessation or futility of continuing curative or life prolonging treatment, and more on the management of symptoms, linked to patient’s and family’s capacities to cope and provide care. Palliative care services were couched as a positive way to relieve the burden of care on the family at a time when the patient’s illness was predicted to inevitably ‘go downhill’. Somewhat surprisingly, the participants offered reflective accounts of the emotions and relationships involved with transitions to palliative care for both patients and FCGs, and cited psychosocial well-being as the principal motivation underpinning ( particularly earlier) referral. It must also be noted, however, that the early or pre-emptive referral may be viewed as self-serving by participants, as it often negates the need for the referring specialist to enter into difficult or uncomfortable conversations with patients/FCGs about death and dying. By introducing palliative care well before it is needed, and by fostering and encouraging patientpalliative care clinician relationships, the referring specialist may be able to defer/avoid discussions about dying. We do not argue here against this strategy per se—it is widely acknowledged that palliative care clinicians are more experienced and trained to manage such difficult conversations—rather, we point to the benefits of the early/pre-emptive referral for the specialist physician, as well as the patient/family. It is clear from the participants’ accounts that the motivations for referral were also influenced by professional and organisation context. As such, a referral may be much more likely to be initiated (at all or earlier) by a specialist with positive relationships with local palliative care services. This finding reveals a landscape of referral embedded in interpersonal and inter-professional relationships.14 23 Moreover, while our findings have pointed to the coherencies of referral practices that cut across the various medical specialties, further research is needed to develop understandings of the idiosyncrasies of such practices as specific or indicative of particular areas of specialty and disease profile. In summary, the findings of this study offer insight into the complexities of decision-making around referral to specialist palliative care. The findings add to ongoing clinical and academic debate regarding the
Kirby E, et al. BMJ Supportive & Palliative Care 2014;4:277–284. doi:10.1136/bmjspcare-2012-000376
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Research roles and responsibilities of medical specialists in enabling timely referrals for patients and their families.23 The highly individualised and idiosyncratic nature of decision-making around referral to palliative care emphasises the urgent need for the development of standardised referral criteria5 to facilitate the streamlining of bureaucratic and inter-professional processes and improve inter-disciplinary communication. Further research on the ways in which patients and FCGs experience and perceive such processes will be invaluable in improving well-being and quality of life for families at this extremely difficult time.
Contributors AB, EK, PG, JW and JA conceived of
the study and supervised the data collection. AB and EK led the qualitative data analysis. All authors participated in drafting and revising the manuscript, and all authors approved the final manuscript. Funding This work was supported by the Australian Research Council (LP120200268; FT100100294). Competing interests None. Ethics approval University of Queensland. Provenance and peer review Not commissioned; externally peer reviewed.
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11 Wright AA, Keating NL, Balboni TA, et al. Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers’ mental health. J Clin Oncol 2010;28:4457–64. 12 Brickner L, Scannell K, Marquet S, et al. Barriers to hospice care and referrals: survey of physicians’ knowledge, attitudes and perceptions in a health maintenance organization. J Palliat Med 2004;7:411–18. 13 Heedman PA, Starkhammar H. Patterns of referral to a palliative care unit: an indicator of different attitudes toward the dying patient? J Palliat Med 2002;5:101–6. 14 Broom A, Kirby E, Good P, et al. Experiences and perspectives on the timing of referral to palliative care: a qualitative study. J Palliat Med 2012;15:1248–53. 15 Quill TE. Initiating end-of-life discussions with seriously ill patients: addressing the “elephant in the room”. JAMA 2000;284:2502–7. 16 Melvin CS, Oldham L. When to refer patients to palliative care: triggers, traps and timely referrals. J Hosp Palliat Nurs 2009;11:291–301. 17 Schofield P, Carey M, Love A, et al. ‘Would you like to talk about your future treatment options?’ discussing the transition from curative cancer treatment to palliative care. Palliat Med 2006;20:397–406. 18 Gott M, Ingelton C, Bennett MI, et al. Transitions to palliative care in acute hospitals in England: qualitative study. BMJ 2011;342:d1773. 19 Maynard D. Bad news, good news: conversational order in everyday talk and clinical settings. Chicago: University of Chicago Press, 2003. 20 Considine J, Miller K. The dialectics of care: communicative choices at the nd of life. Health Commun 2010;25:165–74. 21 Ptacek J, Fries E, Eberhardt T, et al. Breaking bad news to patients: physicians’ perceptions of the process. Support Care Cancer 1999;7:113–20. 22 Quill TE, Arnold R, Back AL. Discussing treatment preferences with patients who want “everything”. Ann Intern Med 2009;151:345–9. 23 Walshe C, Chew-Graham C, Todd C, et al. What influences referrals within community palliative care services? A qualitative case study. Soc Sci Med 2008;67:137–46. 24 Meier DE. Ten steps to growing palliative care referrals. J Palliat Med 2005;8:706–8. 25 Johnson C, Paul C, Girgis A, et al. Australian general practitioners’ and oncology specialists’ perceptions of barriers and facilitators of access to specialist palliative care services. J Palliat Med 2011;14:429–35. 26 Wentlandt K, Krzyzanowska MK, Swami N, et al. Referral practices of oncologists to specialized palliative care. J Clin Oncol 2012. published online ahead of print: doi: 10.1200/JCO.2012.44.0248 27 Hanratty B, Hibbert D, Mair F, et al. Doctors’ understanding of palliative care. Palliat Med 2006;20:493–7. 28 Clark D. What is qualitative research and what can it contribute to palliative care? Palliat Med 1997;11:159–66. 29 Steinhauser KE, Barroso J. Using qualitative methods to explore key questions in palliative care. J Palliat Med 2009;12:723–30. 30 Pope C, Ziebland S, Mays N. Analysing qualitative data. In: Pope C, Mays N.eds. Qualitative research in health care. 3rd edn. Oxford, UK: Blackwell Publishing, 2006:63–81. 31 Fitzpatrick R, Boulton M. Qualitative research in health care: the scope and validity of methods. J Eval Clin Pract 1996;2:123–30.
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Medical specialists' motivations for referral to specialist palliative care: a qualitative study Emma Kirby, Alex Broom, Phillip Good, Julia Wootton and Jon Adams BMJ Support Palliat Care 2014 4: 277-284 originally published online December 14, 2012
doi: 10.1136/bmjspcare-2012-000376 Updated information and services can be found at: http://spcare.bmj.com/content/4/3/277
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Research
Medical specialists’ motivations for referral to specialist palliative care: a qualitative study Emma Kirby,1 Alex Broom,1 Phillip Good,2 Julia Wootton,2 Jon Adams3
1
School of Social Science, The University of Queensland, St Lucia, Brisbane, Queensland, Australia 2 Palliative Care, St Vincent’s Hospital, Brisbane, Queensland, Australia 3 Faculty of Health, University of Technology Sydney, Sydney, New South Wales, Australia Correspondence to Dr Emma Kirby, School of Social Science, The University of Queensland, St Lucia Brisbane QLD 4072, Australia; [email protected]. Received 27 September 2012 Revised 5 November 2012 Accepted 19 November 2012 Published Online First 14 December 2012
To cite: Kirby E, Broom A, Good P, et al. BMJ Supportive & Palliative Care 2014;4: 277–284.
ABSTRACT Objectives The decision to refer a patient to palliative care is complex and often highly variable between medical specialists. In this paper, we examine medical specialists’ motivations and triggers underpinning decisionmaking around referral to palliative care in order to facilitate improvements in referral practices. Methods We completed semistructured, qualitative interviews with 20 referring medical specialists. Medical specialists were recruited from a range of specialties in a major metropolitan area in Australia. Participants were sampled through having referred at least one patient to the specialist palliative care unit during the previous 12 months. Analysis consisted of the framework approach augmented by NVivo 9 data analysis software. Key themes were identified and tested for rigour through interrater reliability and constant comparison. Results The major motivations/triggers identified were: (a) disease-based (eg, pain management and symptom control); (b) pre-emptive/strategic (eg, anticipation of need, preparatory objective); (c) crisis/parallel (eg, physical and psychosocial issues); and (d) team-based (eg, referral as policy/team strategy). Conclusions Referral to palliative care is motivated by a range of individual, interpersonal and organisational factors. In order to improve the care and quality of life of patients and family caregivers, further work is needed to develop streamlined practices that are sensitive to physical and psychosocial considerations, and patient/ family caregiver desires.
INTRODUCTION In the last decade, the process of referral to palliative care has garnered increasing attention in clinical and academic contexts.1–3 Timely referral to palliative care and the improved integration of palliative care teams early in the disease trajectory have been shown to enhance the well-
being of patients and family caregivers (FCGs).4–9 Moreover, a growing body of research points to the association between improved referral practices and increased life expectancy and quality in some contexts.10 11 Despite this, studies continue to identify significant variability in the referral process, according to a range of cultural, clinical and specialty contexts.1 12–14 Thus, although the process of referral to palliative care requires significant attention in terms of establishing best practice models, knowledge of the logics which underpin referral processes in clinical contexts remains limited. In this paper, we explore the experiences and perspectives of a range of medical specialists to better understand the complexities associated with motivations and triggers for referral to palliative care. For referring specialists, decisions around if, when and how to communicate referral to palliative care entail significant challenges.5 14 15 A range of existing studies have shown the difficulties specialists face in assessing the most appropriate time to refer,1 12 16–18 particularly juggling disease-related issues vis-à-vis psychosocial and relational factors.16 Decisions to refer, for example, can be delayed by discomfort on the part of medical specialists regarding ‘breaking bad news’,19–21 or patient and family resistance to acknowledging the end of life.17 22 Furthermore, processes and practices of referral have been shown to differ or vary according to clinical context.1 13 23 The existing evidence base indicates that referrals are motivated by multiple factors, rather than confined to those associated with symptom control.24 How these operate concurrently or are evident within certain clinical contexts remains unknown. The benefits of timely, well-
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Research communicated and considered referrals for patients and carers in terms of quality-of-life measures,9 11 survival estimates,10 as well as for improving patient and carer experiences,7 11 18 23 are well-documented. Existing research focused on the motivations and triggers for referral has found that in practice, specialists still tend to base referrals primarily on physical/disease attributes rather than psychosocial factors.8 25 26 The issue of ambiguity surrounding decisions about when and how to negotiate the ceasing of ‘active’ or lifeprolonging treatment (vis-à-vis a focus on quality of life) intensifies the focus on physical factors, where an emphasis on physical symptoms are more legitimately quantifiable and observable. Thus, medical specialists may be resistant to engaging with more psychosocial aspects of a patient and family’s profile. Such decisions are further complicated by the specialist’s knowledge or awareness of the scope of service provision (beyond narrow definitions of pain and symptom management) and/or availability of local palliative care services.6 14 17 27 Here, we focus on documenting the key motivations for referral to work towards a model of the various influences evident within a range of clinical contexts. We use ‘motivations’ as a broad term to describe the range of interplaying factors and triggers (both behavioural and clinical) which were considered by the specialists in their decision-making about referral; that is, a motivation as any factor which causes (or contributes to) the act or decision to refer. METHODS We used a qualitative inductive approach, using semistructured interviews in order to investigate the experiences and perspectives of medical specialists who refer their patients to palliative care.28 29 For the purpose of this study, we define ‘palliative care’ as the specialist care for those living with or dying from an eventually fatal illness or condition, focused on quality of life. Once local and national ethics approval was granted (Approval numbers: HREC #11/05; 2011000905), hospital records were used to identify specialists who had referred a patient to a specialist palliative care unit in a metropolitan area of Australia. The specialist unit which was the focus of this study consists of 30 inpatient beds and operates within a private hospital with a quota for government-funded beds and community-based palliative care. A total of 119 specialists were listed as referring during 2010, of which all were sent a letter inviting their participation. In all, 30 specialists responded, and 20 were selected and interviewed in 2011–2012, using a purposive strategy of maximum variation sampling. Given that our study followed an inductive approach, this strategy was employed to identify individuals across the spectrum of positions and perspectives, ensuring that a range of referring specialists was represented according to organisational context ( public/private), gender and medical specialty. Table 1 provides a summary of
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Table 1 Summary of participant characteristics Area of specialty
Number (n=20)
Organisational context
Number (n=20)
Medical oncology Radiation oncology Haematology
6 1 1
Public practice only Private practice only Public and private practice
10 7 3
Urology Surgical oncology Ear, nose and throat surgery Pancreatic and hepatobiliary surgery General medicine Geriatrics Palliative care
1 1 1
Gender: male Gender: female
10 10
1 1 2 5
the characteristics of participants. Specialists from medical and surgical oncology, urology, haematology, geriatrics, general medicine and palliative medicine were included in the sample. We included palliative care specialists working in other hospitals in the area who had referred their patients on to the specialist palliative care unit, so as to gain insight from those who also offer perspectives and experiences of receiving referred patients. All participants were experienced doctors with between 16 and 30 years in medical practice, and each of the specialists talked about regularly referring their patients to the specialist palliative care unit focused on in this study. Each participant completed a 45–60 min interview, conducted by AB and EK, and interviews continued until data saturation was reached.30 During the interviews, we focused on the following key themes: perceptions about the role of and basis for palliative care; experiences negotiating palliative care with patients and their families; experiences of managing the transition to palliative care; and facilitators/ impediments to referral.
Data analysis
We employed the framework approach of qualitative data analysis28 which takes place concurrently with the qualitative fieldwork. Specifically, we employed NVivo 9 software to systematically analyse the interview transcripts, using the following steps: (1) Familiarisation: the researchers reviewed the manuscripts. (2) Identification of framework: key themes were identified around which the data were organised. (3) Indexing: application of themes to text. (4) Charting: use of headings and subheadings to build up a picture of the data as a whole. (5) Mapping and interpretation: in which associations were clarified and explanations worked towards.30 Each research team member provided independent coding and analysis to cross-check codes/themes and to develop an overall interpretation of the data. Analytical rigour
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Research Table 2
Summary of motivations and triggers for referral
Motivations/triggers for referral
Examples
Disease-based triggers
▸ ▸ ▸ ▸
Physical decline of patient Observable or measurable changes in prognostic factors Acknowledgement of specialist’s incapacity to continue to manage pain and relieve symptoms Futility of further technically ‘life-prolonging’ treatment
Pre-emptive/strategic motivations
▸ ▸ ▸ ▸
Family circumstances—identification of a lack of family capacity to provide care in the future Initiating patient/FCG–palliative care clinician relationships Preparing patient/FCGs emotionally for the future need for PC Avoiding or deferring uncomfortable conversations about dying
Crisis/parallel motivations
▸ ▸ ▸ ▸ ▸
Witnessing patients ‘falling over’ and ‘going downhill’ Family circumstances/dynamics Patient/FCG emotional distress related to terminal diagnosis Patient/FCG emotional distress related to other known factors Patient/FCG resistance/denial or lack of acceptance
Team-based triggers/motivations
▸ ▸ ▸ ▸
Established professional relationships with palliative care team Accessible and on-site palliative care teams/clinicians Working as a team, including input from nurses’ regarding referral Reputation of local palliative care clinicians
FCG, family caregiver; PC, palliative care.
was enhanced by constant comparison and searching for negative cases in code and theme development.30 31 FINDINGS Here we report the specialists’ experiences and perspectives on the motivations and triggers for referral. Each of the specialists offered insight into their own practices of referral as motivated or triggered by a combination of physical and psychosocial factors. Four key themes emerged from the interviews related to the motivations for referral: disease-based triggers, pre-emptive or strategic motivations, crisis-based or parallel motivations, and team-based triggers or motivations. A summary of key findings and examples is included in table 2. Disease-based triggers
The management of disease-based issues, including pain and symptom management, was cited as a principal motivation for referral by most of the participants (table 3). Accounts of the timing of referral (in terms Table 3
of the decision to initiate discussions with patient/ FCGs about referral to palliative care) were grounded in acknowledgement that the individual specialist and/or current clinical team was no longer able to provide adequate care in terms of pain and symptom management without specialised assistance. In reference to physical changes or shifts in the illness trajectory, the majority of participants told of patients ‘going downhill’ or ‘falling over’ as the trigger point for referral.14 The physical decline of a patient as a trigger for referral was frequently talked about in terms of shifting forms of treatment, where a focus on symptom management was viewed as within the expertise of palliative care. The interviews also highlighted referral to palliative care within ‘objective’ or clinical terms. That is, participants frequently described their decisions to refer using clinical terminology and by focussing attention on the physical aspects of disease progression. Such talk within the interviews is perhaps reflective of the style of the medicalised training and expertise of referring specialists. The majority of participants
Disease-based triggers
Participant
Example quotations: disease-based triggers
#18, Oncology
So we refer...mainly for patients who are getting towards the end of their metastatic disease process I guess, who are starting to need some community support, or whose symptom control is starting to be such that they need that sort of access to 24-hour a day nursing call information service. ...Often you’d start the thing [conversation about referral] with “where we are at the moment, because you’ve got a disease for which we have no treatment that will make any effective difference to.” ...I consider that it’s an important part of what you do, that you’re actually honest in telling them that you know, they have an infixable (sic) position, and there is no actual active therapy that will make a difference, apart from symptom control. Well I guess what I say is, “up until now we’ve been treating the cancer, but now what we’re going to do is look at treating the symptoms, so you know, this is palliative care in terms of dealing with what the cancer problems that arises, such as the pain or breathlessness, rather than just deal with the cancer”.
#10, Oncology
#8, Oncology
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Research Table 4
Pre-emptive/strategic motivations
Participant
Example quotations: pre-emptive/strategic motivations
#12, Haematology
My approach to the patients is to say to them, “you are on that pathway now, we’re still some way from the end, but it’s very important to get the palliative care providers involved early.” And so I emphasise with them that we don’t want to do this as a rushed thing at the last minute, we want the providers in early, so they get to know you, they get to know your family, they get to know your wishes, and they can build things in place. So it’s quite a deliberate policy, it’s a very early referral process, and it’s couched in those terms, so that it’s not threatening or intimidating to the patients, but is seen as part of how they will be cared for, and by their family, and is very positively received. And I say sometimes, “well, it’s good to meet them, because then you’re in the system, and if you start to run into problems, you’re name’s on the list”. And for me I mean, when I normally discuss palliative care, I just say for you know, a cancer treatment, “there are three main specialities, there’s chemotherapy doctors, radiotherapy doctors, and there’s symptom control doctors, and palliative care fall into that group”. Yeah look um, I often think that the term ‘palliative care’ is a handy one to have, because you can you know, it’s not as blunt as ‘end of life,’ or ‘terminal care.’ So we’ll often have to have that conversation [about referral] with the patient and their family, but probably we tend to avoid the really difficult issues, and sort of hope that the palliative care physician will deal with those things.
#11, Oncology #4, Radiation oncology #5, Surgery
described their own provision of palliative care for patients, usually only in the form of pain management, rather than any consideration of psychosocial support. Thus, the trigger for referral was described by some as the point at which their own expertise in pain and symptom control was insufficient (in line with an acknowledgement of the futility of pursuing any further life-prolonging treatment). Pre-emptive/strategic motivations
The majority of participants stressed the importance of timely or early referrals as good practice14 and that these timely referrals were primarily motivated by a desire to transition the patient and FCGs more gradually towards palliative care before a time of crisis. In contexts where specialists considered palliative care to be eventually inevitable, their accounts of what triggers a referral were embedded in ideals about preparing the patient and FCGs as best they could for the future need for palliative care (table 4). There was consensus among the participant group of the importance of referral to palliative care as a transitionary process. This type of ‘pre-emptive’ referral was viewed positively by most of the participants, highlighting referral to palliative care as a transitionary process as ideal, if not always practical. In accounts of the explanation of palliative care to patients, most participants couched it in positive terms. Moreover, for the most part, the specialists we interviewed spoke of describing palliative care (to patients and their families) as part of a multi-disciplinary care team, where palliative care clinicians were constructed as more equipped to manage complex patient and FCG issues as illness progressed. Referral to palliative care as transitionary or pre-emptive was also talked about—and observed by the interviewers in terms of the participants’ tone of voice and body language—as strategic. That is, there were clear benefits of earlier referral for the patient, the family and the specialist. One significant perceived benefit of pre-emptive referral for was related to the potential deferral or avoidance of 280
discussions about death and dying. Earlier referrals in this way may allow the referring specialist to sidestep potentially difficult or uncomfortable conversations with patients and FCGs about death and dying, and some participants acknowledged the discomfort they felt. Furthermore, two participants related conversations about death and dying as outside of their training and/ or remit insofar as they viewed palliative care clinicians as better suited (and equipped) to deal with patients and their FCGs as they approached the end of life. As such, referrals can be seen as motivated by a desire to avoid emotional or relational issues. Yet, for some of the participants, as we discuss below, a focus on psychosocial factors was central to referral practices. Crisis/parallel motivations
A key theme throughout the interviews was the crisis/ parallel motivations for referral (see table 5). That is, the need for symptom control in conjunction with a noticeable decline in patient/FCG emotional wellbeing, or decreased capacity to cope and continue the provision of care without specialised assistance. For the majority of participants, physical and psychosocial factors were considered as inextricably linked and were to be considered as going ‘hand-in-hand’ when assessing the need for referral. The example quotations shown in table 5 are typical of those of the referring specialists we interviewed. Referral to palliative care was reported to be motivated by quality of life and family care as well as an analysis of the patient’s disease profile, symptoms or comorbidities. However, some of the participants were more attentive to family structure and issues of daily living than others. For these participants, decisions to refer were primarily motivated by the assessment of the patient and family’s ability to cope, and/or the (lack of ) potential for continuing home care. The majority of participants offered detailed patient case accounts which more often than not included a knowledge (albeit sometimes basic) of the patient’s home care context, FCGs and family dynamics. In fact, some of the
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Research Table 5
Crisis/parallel motivations
Participant
Example quotations: crisis/parallel motivations
#8, Oncology
The way I sort of put it [is] that it’s one, dealing with the problems, the symptoms the cancer causes, so it’s symptom control, and secondly, support mechanisms really, and practical support. Um, where you start to see um, impairment in activities of daily living, or if you feel there’s going to be predictable loss of ability to care at home. Ah, sometimes it’s as much the couple, as the individual. So you can have a very good coping, caring family with lots of infrastructure, where you might not refer them as early as somebody who is the primary carer for a demented wife. I brought a patient in two days ago, with some pain from his cancer, but he’s not coping. But the reason he’s not coping is because his brother-in-law just died a couple of weeks ago, and I think he and his wife had just unravelled. It’s the distress…the existential distress was his problem, and... that is where a palliative care service works very much for me, because he, there is this intermingling you know. So [PC specialist] is going to see him about that. But he’s a person who, if he walked in early next week for his next course of chemotherapy and he hadn’t had those issues, I wouldn’t refer him. But it really is symptom or emotional distress that are the trigger points for referral. I don’t refer patients because they’ve got a diagnosis of metastatic cancer, because many people...just aren’t ready for that. Those of us who have been medical oncologists for a long time, we don’t have any problem referring people to palliative care, but sometimes the patient doesn’t want that at the early stage, and that’s fine. [I can] say to them, “okay well obviously it’s getting difficult for you to manage at home, and your wife, I think we should start to get some palliative care services,” [but] sometimes they’re not willing to accept that, because that equates with the final stages of their illness, and it means that they’re you know, accepting that their condition is terminal.
#2, Urology
#17, Oncology
#17, Oncology #11, Oncology #8, Oncology
PC, palliative care.
participants stressed their individual focus on family details as a driving force in triggering referrals. We also heard of perceptions or experiences of patient/ FCG resistance or denial, where considerations of ‘readiness’ or acceptance of terminality (and palliative care as synonymous with terminality) were central to decision-making around referral. Thus, decisions around referral entailed a complex appraisal of both physical and psychosocial factors including (often both clinically and ethically difficult) prognostication, an understanding of family context and capacity to provide care, and an assessment of ongoing and evolving processes of emotional distress or acceptance. Team-based triggers/motivations
While the need for specialised pain and symptom management and psychosocial care were talked about as the two motivating factors for referral, these were often explained as enabled (or sometimes impeded) Table 6
by interdisciplinary communication and liaison (see table 6). The relationship between a referring specialist and local palliative care clinicians, the position of the referring specialist within a multidisciplinary team, or the reputation of local palliative care teams were all talked about as either motivating (or impeding) processes of referral. Some of the participants spoke of close working relationships with palliative care teams. In these cases, referrals were explained as embedded in a team-oriented approach to care, where the fluidity and ease of referral to accessible palliative care teams may avoid ‘late’ referrals, or those characterised by crisis. Moreover, for some of the participants, the presence and role of nursing staff was also a significant trigger for referral. Nurses were viewed by these specialists as having the potential to ‘pick up on’ patients in need of referral due to the time they potentially spend with patients (relative to the specialist). The palliative care physicians we interviewed also
Team-based triggers/motivations
Participant
Example quotations: team-based triggers/motivations
#13, Geriatrics
Yeah, they’ve been very good actually, but of course having them onsite is great, you can generally just go down and talk to them and say, “we’d like you to have a look at Mrs so-and-so...She looks like she’d be perhaps better managed now under your care.” Pall[iative] care referrals are often prompted by the nursing staff, who might suggest it... We have an excellent system which you don’t see very often, is that we work absolutely side-by-side and directly along with the oncologists. And the ward is joint, there’s a joint registrar, so the registrar will see the oncology patient with an oncology hat or a palliative care hat. So it’s very much an equal, an equal footing. Consultants throughout the rest of the hospital will refer patients on as well, if they think they need palliative care...So I’ll see them and then the oncologist will see them at the same time. I have a very poor professional relationship with the palliative care physician here, and that’s fairly widespread. And I’ll be honest about it, I used to refer to [the particular PC specialist] very early, and I found that [PC specialist’s] attitude, and comments to me, personally, as a doctor, belittling. And, as a consequence, with that behaviour, I’ve never referred [the particular PC specialist] a patient since. On the other hand, I’ve always valued the service over there [PC service]. So it’s a personal relationships thing, where they’ve provided a great service, and they’ve never questioned what you’re doing, or criticised you, whereas other people have, and I have nothing to do with those people.
#4, Radiation oncology #3, Palliative care
Specialty removed to preserve anonymity
PC, palliative care.
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Research talked about the positive impacts of close working relationships with referring specialists, highlighting the importance of shared care and inter-professional communication. A range of examples were offered by participants of both positive and negative professional and bureaucratic contexts which they explained as facilitators or barriers to the referral process. While there were many examples offered during the interviews which highlighted positive team-based dynamics as motivating or triggering referral, there were also (albeit less frequent) accounts of such relationships impeding referral processes. Thus, interpersonal and cross-disciplinary relationships seem to be highly significant in the process of referral to palliative care. Decisions around if, when and how to refer a patient are therefore further complicated and contextualised within a landscape of interpersonal and interprofessional dynamics. DISCUSSION The findings presented here provide timely insight into the day-to-day referral practices of a range of medical specialists. A key theme within the interviews was the multifarious factors impacting on the decision of when and how to refer a patient to palliative care. Discussions about referrals to palliation were considered by all of the specialists to be synonymous with ‘breaking bad news’19–21 and each were conscious to communicate the need for referral to palliation carefully. All of the specialists we interviewed were experienced in the delivery of a terminal (or life-limiting) diagnoses and/or poor prognoses, and offered detailed accounts of the process of communicating this news and shifting the dialogue towards referral. In doing so they revealed the potentially idiosyncratic nature of referral decision-making and the importance of the consideration of FCGs, particularly in the assessment of the capacity of a family to provide and manage care approaching the end of life. The timing of referral was talked about as a particularly difficult decision, based on a complex combination of factors, and influenced most significantly by the patient’s illness trajectory in line with the family’s capacity to cope with increasingly demanding care.14 In contrast with existing research,8 psychosocial factors including emotional distress or FCG caring capacity were offered by participants as a key motivation for referral (rather than the future need or current inability to control symptoms in isolation). This finding reveals a more nuanced and complex set of considerations for referring specialists, whereby the majority of those we interviewed drew upon their knowledge of individual patient/FCG contexts in conjunction with their assessment of prognosis. However, we note here that although psychosocial factors were often viewed as an important motivation for referral, the emphasis was largely placed on the patient/FCGs/ specialist team no longer being equipped to cope,
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rather than the scope of palliative care. That is, several referring specialists only talked about palliative care within the context of pain and symptom management, with little awareness of the wide range of services tailored towards the physical and psychosocial needs of patients and FCGs.14 26 32–35 As such, our findings serve as a reminder of the importance of needsbased consideration (for both patients and their families) which can be obscured by referrals when triggered or motivated by physical symptoms alone.5–7 16 23 Each of the specialists interviewed offered examples of negotiating referral that emphasised the parallel motivational factors for palliation as concurrently medical and psychosocial. There was less focus on the cessation or futility of continuing curative or life prolonging treatment, and more on the management of symptoms, linked to patient’s and family’s capacities to cope and provide care. Palliative care services were couched as a positive way to relieve the burden of care on the family at a time when the patient’s illness was predicted to inevitably ‘go downhill’. Somewhat surprisingly, the participants offered reflective accounts of the emotions and relationships involved with transitions to palliative care for both patients and FCGs, and cited psychosocial well-being as the principal motivation underpinning ( particularly earlier) referral. It must also be noted, however, that the early or pre-emptive referral may be viewed as self-serving by participants, as it often negates the need for the referring specialist to enter into difficult or uncomfortable conversations with patients/FCGs about death and dying. By introducing palliative care well before it is needed, and by fostering and encouraging patientpalliative care clinician relationships, the referring specialist may be able to defer/avoid discussions about dying. We do not argue here against this strategy per se—it is widely acknowledged that palliative care clinicians are more experienced and trained to manage such difficult conversations—rather, we point to the benefits of the early/pre-emptive referral for the specialist physician, as well as the patient/family. It is clear from the participants’ accounts that the motivations for referral were also influenced by professional and organisation context. As such, a referral may be much more likely to be initiated (at all or earlier) by a specialist with positive relationships with local palliative care services. This finding reveals a landscape of referral embedded in interpersonal and inter-professional relationships.14 23 Moreover, while our findings have pointed to the coherencies of referral practices that cut across the various medical specialties, further research is needed to develop understandings of the idiosyncrasies of such practices as specific or indicative of particular areas of specialty and disease profile. In summary, the findings of this study offer insight into the complexities of decision-making around referral to specialist palliative care. The findings add to ongoing clinical and academic debate regarding the
Kirby E, et al. BMJ Supportive & Palliative Care 2014;4:277–284. doi:10.1136/bmjspcare-2012-000376
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Research roles and responsibilities of medical specialists in enabling timely referrals for patients and their families.23 The highly individualised and idiosyncratic nature of decision-making around referral to palliative care emphasises the urgent need for the development of standardised referral criteria5 to facilitate the streamlining of bureaucratic and inter-professional processes and improve inter-disciplinary communication. Further research on the ways in which patients and FCGs experience and perceive such processes will be invaluable in improving well-being and quality of life for families at this extremely difficult time.
Contributors AB, EK, PG, JW and JA conceived of
the study and supervised the data collection. AB and EK led the qualitative data analysis. All authors participated in drafting and revising the manuscript, and all authors approved the final manuscript. Funding This work was supported by the Australian Research Council (LP120200268; FT100100294). Competing interests None. Ethics approval University of Queensland. Provenance and peer review Not commissioned; externally peer reviewed.
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Kirby E, et al. BMJ Supportive & Palliative Care 2014;4:277–284. doi:10.1136/bmjspcare-2012-000376
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Medical specialists' motivations for referral to specialist palliative care: a qualitative study Emma Kirby, Alex Broom, Phillip Good, Julia Wootton and Jon Adams BMJ Support Palliat Care 2014 4: 277-284 originally published online December 14, 2012
doi: 10.1136/bmjspcare-2012-000376 Updated information and services can be found at: http://spcare.bmj.com/content/4/3/277
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