Specialists' Experiences and Perspectives on the Timing of Referral to Palliative Care: A Qualitative Study

Abstract

Background:

Specialist referral practices regarding palliative care are variable and their decision-making practices regarding timing and communication remains an under-researched issue. More effective referral practices have been shown to enhance patient and carer experiences at the end of life, reduce the burden on pre-palliative care services, and even extend life expectancy in some cases.

Objective:

The aim of this study was to examine the logics underpinning the timing of referral to palliative care according to a range of medical specialists in a regional center on the east coast of Australia, in order to facilitate improvements in referral practices.

Methods:

We conducted semi-structured, qualitative interviews with 20 medical specialists and carried out a thematic analysis of the interview data, utilising the framework analysis approach and NVivo 9 software. Key themes were tested for rigour through inter-rater reliability.

Results:

The major themes identified within this analysis of the interviews were: a) strategies for preparing for palliative care and the importance of planning timely referrals; b) perception of inter-professional variation and reasons for delayed or difficult referrals; and c) the importance of inter-specialty communication and cross-disciplinary dialogue.

Conclusions:

Significant barriers exist to the timely referral to palliative care, and, in order to improve patient and care quality of life and lessen clinical difficulties, further work is needed to develop streamlined practices that are sensitive to specialty needs and patient desires.

Introduction

Timely referral to palliative care* has been shown to improve patient and family care giver (FCG) well-being, and in some contexts even increase life expectancy.¹ Yet existing research suggests that in a range of different cultural, clinical, and specialty contexts, referral to palliative care is highly variable.^2–4 Despite greater engagement with palliative care and enhanced communication around patient needs in recent years, we still know little regarding the logics underpinning referral to palliative care across a range of medical specialties. Furthermore, ambiguity amongst many health professionals regarding the right time to refer has produced unnecessary cost and burden on acute care providers.^5,6 Below we examine a range of Australian medical specialists' perspectives and experiences to develop a clearer understanding of subjective influences on the timing and character of referral to palliative care.

Clinicians face substantial challenges and barriers when assessing appropriate timing of referral to palliative care.^2,7,8 For example, studies have shown the discomfort experienced by health professionals in discussing palliative care with patients and how this may delay or limit discussions.^9–11 Studies utilizing questionnaires and analyzing referral mechanisms have illustrated significant variation in the timing of referral between and within professional groups.^2,4 Moreover, these variations can have profound effects on patient and carer experiences.^6,12–14 The triggers for referral have been identified as intensifying already complex decision making around appropriate timing. For example, referrals may be in reaction to a clinicians' decreasing ability to manage or control symptoms and may come too late in the course of disease for palliative care services to have meaningful effects on a patient's quality of life.^1,2,6,15 While the adverse consequences of late (or inadequately communicated) referral are clear, the benefits of timely referral to palliative care for patients and FCGs have been demonstrated in terms of measures of quality of life,¹⁶ patient and FCG experience,^17,18 and survival estimates.¹ A growing body of work, for example, offers evidence in favor of more frequent and early (or earlier) referral to palliative care,^1,16 and the need for multifariously motivated referrals, rather than simply those relating to symptom control.¹⁸ This work further shows that the timing of referral should entail a greater knowledge, awareness, and understanding of what palliative care services can offer the patient and FCGs beyond pain management.^9,13,19,20

Methods

We employed a qualitative design, utilizing semistructured interviews with medical specialists, to explore their experiences of and perspectives on referring their patients to palliative care.^21,22 Following local and national ethics approval, specialists were identified via hospital records of those who had referred a patient to a large specialist palliative care unit in a metropolitan area of Australia during 2010. In total, 119 specialists were invited to participate via letter and 30 responded. Twenty specialists were selected and interviewed in 2011–2012 to ensure representation of a range of referring specialists in terms of organizational context (public/private), sex, and medical specialty. A summary of participants' characteristics is included in Table 1. Interviews continued until data saturation was reached.²³ Participants included specialists from medical and surgical oncology, urology, haematology, geriatrics, general medicine, and nonspecialist palliative medicine.† Participation involved a 45–60 minute interview in the specialist's rooms, and 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 (see appendix). These themes, and associated interview questions, were developed to begin to fill gaps in existing knowledge and literature, and in accordance with problems identified by authors PG and JW based on their clinical experience.

Table 1.

Participant Characteristics

Characteristic	n=20
Area of specialty
Medical Oncology	6
Radiation Oncology	1
Haematology	1
Urology	1
Surgical Oncology	1
Ear, Nose and Throat Surgery	1
Pancreatic and Hepatobiliary Surgery	1
General Medicine	1
Geriatrics	2
Palliative Care	5
Organizational context
Public practice only	10
Private practice only	7
Public and private practice	3
Sex
Male	10
Female	10

Data analysis

Interview transcripts were subject to an inductive thematic analysis that took place concurrently with the qualitative fieldwork process. Specifically, we used a systematic approach to analysis using NVivo 9 software that broadly involved (1) familiarization: in which the researchers review the manuscripts; (2) identification of framework: key themes and issues will be identified around which the data will be organized; (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; and (5) mapping and interpretation: in which associations are clarified and explanations worked towards.²³ Members of the research team provided independent coding and analysis to cross-check codes and themes and to develop an overall interpretation of the data. Analytical rigor was enhanced by searching for negative cases in code and theme development.^23,24

Results

The timely referral: Preempting the inevitable need for palliative care

All of the participants commented that in theory, early or timely referrals were beneficial for patients, clinicians, and FCGs. Here we report the practices, experiences, and contexts of referrals considered by participants to be timely, that is, preemptive referral before palliative care was explicitly warranted in reaction to uncontrollable symptoms. A significant motivating factor for timely referral was preparing patients and FCGs for the end of life, particularly through initiating relationships with palliative care staff, highlighted by the examples below.

“I try and preempt them and say, “I'd very much prefer if you met the palliative care colleagues, so you get to know a friendly face…because when the time comes, these people will be looking after you, and they'll get to know you now, and you'll get a nice, warm, hopefully good relationship with them, and then they'll be your first port of call if there's a problem.” [Surgery]

“I think it's easier to introduce the concept of palliative care much earlier, when they're well, as something they might need later on.” [Radiation Oncology]

“And I say sometimes, ‘Well it's good to meet [with the palliative care team], because then you're in the system, and if you start to run into problems, your name's on the list.’” [Radiation Oncology]

“When I know that a patient is in a situation where their disease is going to be a progressive downward course, my motivation is to refer very early.” [Haematology/Medical Oncology]

These comments highlight the consensus amongst all participants of the benefits of timely referrals in facilitating effective transitions to palliative care for patients and FCGs in preparation for the end of life. These preemptive referrals were central to ideas about referral to palliative care as a transitional process, rather than simply handing over the patient. However, such ideals were acknowledged by all participants as often not realized in practice.

The late referral: Intraprofessional differences and barriers to referral

A key topic within the interviews was the specialists' perspectives on and experiences of the barriers to referral and their reflections on their practices and those of other specialists (see Table 2). While each emphasized in theory the importance of a timely referral, each also stressed the idiosyncratic nature of his or her own practice and those of others.

Table 2.

Barriers to Timely Referral

Barriers to timely referral	Examples
Philosophy of the individual or medical specialty	- Continuing treatment for too long
	- Avoiding uncomfortable conversations about death and dying
	- Avoiding admission of failure of disease-specific and/or life-prolonging treatment
	- Difficulties handing over/‘letting go’ of patients
	- Personal crusades against diseases
Patient/family caregiver characteristics	- Age of patient
	- Family circumstances
	- Patient or FCG resistance/denial
Organizational constraints/interspecialty dialogue	- Lack of understanding/knowledge of available specialist palliative care services
	- Lack of onsite palliative care services
	- Lack of working relationships with palliative care specialists in the local area
	- Lack of team work
	- Difficulty navigating bureaucracy

FCG, Family caregiver.

“So it's, sort of, I guess, individual needs driven, and patient desire as well.” [Medical Oncology]

“Each patient is an individual, and although guidelines, and policies, and best practice can help you, what you've got to do is look at the person in front of you, and optimize their medical care appropriately.” [Urology]

Accounts of significant variation in the timing of referral according to speciality were frequent, highlighting perceptions that some specialties were “better” than others at ensuring timely referrals. Moreover, certain specialties were viewed by other specialists (including palliative care specialists) as more reluctant to refer patients in a timely way, as evidenced by the three examples below.

“I'm sure my oncology colleagues who try more to keep them going, [think]‘Oh we'll try another round of chemo,’ kind of thing. [Surgery]

“Because you see, some of them just never refer, they don't refer to palliative care. They just keep flogging them, and flogging them, and flogging them…there are certainly some medical oncologists who have trouble [knowing when to refer].” [Radiation Oncology]

“Haematology is, well you know the story with haematology; haematologists don't refer period! Oh, because patients are treated until they die, basically. Um, and for the bad haematologists, that is because it's the easier way to go…. Well then you never have to have the conversation with the patient [about death and dying].” [Palliative Care]

Late referrals were frequently associated with “bad deaths” and were viewed as detrimental for patients, families, and clinicians. There were strong perceptions that some medical specialists lacked the knowledge, experience, or inclination to give due consideration to referral to palliative care and the cessation of further treatment. Late referrals were explained by some participants as synonymous with continuing treatment for “too long,” or in circumstances where this treatment may not be of sufficient benefit to the patient. Moreover, late referrals were viewed as about avoiding or deferring potentially uncomfortable conversations with patients and their families about death and dying; avoiding admission of the failure of curative treatment; and as a consequence of professional “crusades” against disease (namely cancers), rather than a focus on a patient's quality of life.

For an oncologist it's holding on and trying more treatment. [Surgery]

“I personally find those end-of-life kind of issues very difficult to deal with, and to broach with a patient…. I suppose initially it's just the admission that we've been defeated by the disease.” [Surgery]

“Because the oncologists are trying to push back the frontiers, they have a whole bevy of trials that they need people on, so if you don't suit one trial you may well suit another…. Some people feel they need to do everything they possibly can. To every man with a hammer everything is a nail. So if an oncologist really likes a person and wants to help them, they give them chemo, and the same with a surgeon, they'll say, ‘Oh shit, let's do the surgery.’” [Palliative Care]

Later referrals were rationalized by several participants, who cited the specificity of particular disease profiles, the constraints of working environments, or indeed the desires and wishes of a patient or FCGs to persevere with “active” treatment despite advice from referring specialists as to the likelihood of success.

“My haematological patients are very different, because the downward path for the haematological patient is very different, is much faster. And so you have a much shorter preparation phase, and the palliative care services are called in very close to the end. And so the referral process is often much later. So they're just very different diseases, and so I think people, they might feel that it's politics, but it's actually different diseases.” [Haematology, Medical Oncology]

“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 patients don't want that at the early stage, and that's fine.” [Medical Oncology]

The comments above reiterate the complexity of referral practices, and the multifactorial influences that shape decision making on the timing of referral to palliative care. Moreover, these excerpts highlight the constraints and barriers to timely referral.

Normalizing palliation: Working with a palliative care team

The presence of palliative care clinicians was viewed as a significant facilitator of timely referral. In contexts where palliative care specialists or nurses worked alongside referring medical specialists (usually within larger hospitals where multidisciplinary teams were more common), referrals were reported as more likely to be made earlier. The comment below was typical of those referring specialists who work in more than one context, whereby early referrals were more likely to occur when palliative care clinicians were more frequently physically present.

“I have the palliative care physician at [hospital A] and…I essentially refer everyone who has metastatic disease, who has symptoms, or I think they're going to develop symptoms at some stage, to [the palliative care physician]…. I like them to actually meet [the palliative care physician], often when they're well, and then they can make contact if they do, later on…. I tend to make fewer palliative care referrals here [hospital B], they tend to be people who actually have symptoms. [Radiation Oncology]

For this participant and others, the presence of palliative care clinicians influenced the timing and reasons for referral. Several specialists noted earlier referral as one of the benefits of increasingly close connections with palliative care clinicians.

“In the last…three or four years…we've had a palliative care physician regularly attend our head and neck clinics. And that's been a great ah, advance for us, and the way the clinic functions. From a personal perspective…when you see someone with a cancer, it's very hard to make the decision not to treat them. But having a palliative care physician there sort of aids that you know, because you've got someone there that can say “Well look, we can look after them well, and ensure that they have everything they require.” [Surgery]

“Oh I think we've got better. I think we used to send them late, but I think we're getting better and sending them earlier, and that's because we have a closer interaction with the palliative care people, and we know they're happier to see them [patients] earlier.” [Radiation Oncology]

As demonstrated in the excerpts above, increasing emphasis on shared care and the importance of multidisciplinary teams was viewed by several specialists as a positive development toward improving timely transitions to palliative care.

Communication and streamlining referral: Interspecialty and crossdisciplinary dialogue

The reputation of, or relationships with, palliative care specialists were also reported to influence the timing of referral. In contexts where palliative care clinicians were not immediately present, good professional reputations or indeed positive relationships between referring specialists and palliative care specialists were discussed as facilitating earlier referrals. Reflective of the participants' views more broadly, one participant commented:

“I mentioned [names two palliative care specialists], but I don't have a personal relationship with them, I just know that this is something I don't do, they do it really well, so I'm going to send the patients to them fairly early.” [Haematology, Medical Oncology]

Thus, timely referrals were presented by the specialists as being facilitated by effective communication from palliative care services, even when they worked in separated vicinities from referring specialists. Two participants included accounts of the establishment of positive relationships with particular palliative care specialists following informal visits by the palliative care clinicians and reciprocated visits to a specialist palliative care unit. In addition, the interviews illustrated the importance of nursing staff in influencing the timing of referral, where participants acknowledged the role of nurses in initiating talk about referral:

“Often we [specialists] don't think of it [referral], and it's the nursing staff who remind us, to think of it. Early referral is better, we know that, but we kind of forget.” [Radiation Oncology]

“The nurses and allied health people are very aware that patients are deteriorating, probably more aware than the medical staff sometimes.” [Palliative Care]

The participants' accounts highlight the importance of a team-orientated approach in managing and initiating timely referrals to palliative care. Allied health and nursing staff were often viewed as having greater access than specialists to subjective and objective indicators of disease progression. According to the participants we interviewed, the immediate presence of palliative care clinicians was ideal. Yet timely referral practices were also facilitated in situations where referring specialists had good links with palliative care specialists, and where a range of clinicians (nursing/allied health) were actively involved in referral processes.

Discussion

This is the first qualitative study to examine a range of Australian medical specialists' perspectives on and experiences of the timing of referral to palliative care. It is clear from the participants' accounts that a complex range of barriers may be present that limit timely referral. Moreover, the findings illustrate that decision making about the timing of referral can be highly contextual and even problematic and there is a need for future research to explore a range of referral contexts and stakeholder perspectives with regard to these issues.

Timely referral was advocated by all participants, primarily underpinned by the desire to prepare patient and FGCs for the end of life, limit unnecessary treatment, and streamline care focused on quality of life. Yet, in practice, referrals were viewed as greatly influenced by disease context and relationships with palliative care clinicians. Timely referral, particularly in preparation for future palliative care, was talked about as being facilitated significantly by the presence of palliative care clinicians.^18,20 Moreover, the institutional presence of palliative care clinicians exposed referring specialists to the range of services offered by palliative care providers beyond symptom management, and thus facilitated earlier referrals motivated by psychosocial factors such as FCG well-being. However, and in line with previous work,^25,26 several referring specialists understood palliative care only in terms of pain and symptom control. The findings also illustrate the role of patients and FCGs in influencing the timing of referral, in that each participant spoke of patients' and FCGs' resistance to referral and this lack of “readiness” (accepting a terminal diagnosis).^2,27,28 Delayed referral was often a relational problem, involving both the patient and FCGs (desire to live),²⁹ and the specialist (desire to continue active treatment). As such, in considering referral practices, we need to explore how patients and clinicians may (implicitly or explicitly) collude to delay the process.

The data provided here offer important insights into the logics underpinning the timing of referral. The impacts of “late” referral can entail huge emotional costs for patients and FCGs, as well as financial costs for health systems. Clearly, referring specialties have varying practices and perspectives, and enhancing communication and practice guidelines, nuanced according to the needs of each specialty, may improve timely referral practices. Our findings suggest a renewed focus on the barriers to referral and interspecialty dialogue. As such, we offer a reminder to clinicians of the importance of developing awareness of available palliative care services, and acknowledging the personal as well as organizational factors that can impede referral processes. Additional research on the ways that the personal and professional background and experiences of a specialist may shape the approach to referral is needed to develop understandings of the barriers to timely referral practices,^12,13,30 in order to improve patient and FCG experiences at the end of life.¹⁹

Footnotes

Author Disclosure Statement

The authors declare that there are no conflicts of interest, and no competing financial interests.

Appendix: Interview Protocol

1. Broader perspective on the role of and basis for palliative care

Example questions:

- What interaction/involvement do you have with palliative care services?

- From your perspective, what is the role of palliative care in the context of your clinical work?

2. Experiences with and perspectives of discussing/negotiating palliative care with patients and FCGs

Example questions:

- On what basis would you refer a patient for palliative care?

- How do you go about discussing the possibility of referral with patients and FCGs?

- How do you feel about having such discussions with patients/carers?

- What makes it difficult to refer your patients?

- What would make it easier to refer your patients?

3. Diversity of experiences according to specialty/patient group

Example questions:

- Does your clinical context and patient group have any special needs in regards to palliative care service provision?

- To what extent are palliative care services responsive to your specific needs and those of your patients?

4. Experiences of interactions with allied health and palliative care clinicians

Example questions:

- What are your experiences of interacting with palliative care specialists?

- What do you see as the respective strengths and weaknesses of palliative care services?

- Why do you refer to particular services?

*

In Australia, for the purpose of this study, “palliative care” refers to the specialist care, focused on quality of life, for those living with or dying from an eventually fatal illness or condition.

†

The cohort included palliative care specialists working in the area who had referred their patients on to the specialist palliative care unit. We included these specialists in order to gain insight into the perceptions and experiences of those who not only refer their patients on to a specialized palliative care service, but also offer perspectives of receiving referred patients.

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