Palliative care specialists’ perceptions concerning referral of haematology patients to their services: findings from a qualitative study

Haematological malignancies (leukaemias, lymphomas and myeloma) are generally considered a complex group of diseases that account for around one in ten of all cancers and affect all ages [1]. Characterised by remitting and relapsing trajectories, unpredictable pathways and divergent outcomes, these diseases range from indolent subtypes that progress slowly over many years, to aggressive conditions with poor prognoses. Although some disease subtypes are considered incurable from diagnosis, new and evolving therapies mean that some patients now have relatively normal life spans; yet others continue to have poor survival, despite intensive treatment [2, 3].

Patients with haematological cancers typically experience symptoms as a consequence of both their disease and/or the side effects of treatment. These manifest physically and psychologically, and are comparable in number, severity and distress to those experienced by patients with other cancers [4‐7]. Although the importance of good symptom control and end of life care is widely recognised, there is some evidence of unmet needs in settings outside of the United Kingdom (UK) [6, 8, 9].

Specialist palliative care (SPC) is reported to have a positive effect on quality of life for patients with some cancers [10, 11], and early access to these services is recommended alongside disease directed treatment [12, 13]. For haematological malignancies, evidence suggests that palliative care specialists can optimise symptom management; facilitate more effective coping, accepting and planning for patients (and family members) in dealing with prognostic uncertainty; and act as a communication bridge between the haematologist and the patients, particularly in situations where patients do not fully discuss their fears and concerns with the haematology team [14]. Despite this, research from the UK, United States (US) and elsewhere, indicates that patients with these diseases are not referred to SPC and hospice services as often as people with other cancers [15‐18]; and those who access hospice care have poorer health at the time of admission and shorter lengths of stay [19, 20]. These factors are often considered to reflect poor quality end of life care [21].

Referral practices are increasingly the focus of international research (based mainly on reviews of patient records, but also some qualitative studies with haematologists), which provides insights into reasons for late or non-referral of patients with haematological malignancies [22‐26]. A recent integrative systematic review, for example, highlights reluctance on the part of haematologists to refer to SPC services due to differing treatment goals, prognostic difficulties, and preference of haematology specialists to manage palliative care, as barriers to referral [27]. However, knowledge of the perspectives of SPC clinicians concerning barriers and facilitators to referral is largely absent [20]. Our study, the first of its kind in the UK, was designed to specifically address this deficit, through interviews with SPC doctors and nurses. The aim of the study was to capture data that enhance understanding of factors that promote or prevent the integration of palliative care and haematology services.

Study participants identified a range of barriers and facilitators influencing the referral of patients with haematological malignancies to SPC services. Barriers included: the characteristics and pathways of haematological malignancies; the patient/haematology team relationship; lack of role clarity; late end of life discussions and SPC referrals; policy issues; and organisational issues. The main facilitators identified were: establishment of inter-disciplinary working patterns (co-working) and role clarity; timely discussions with patients; access to information platforms able to support information sharing; and use of indicators to ‘flag’ patients’ needs for SPC. Each of these is examined below, with illustrative quotes:

This is the first UK study to explore SPC doctors’ and nurses’ perceptions about the referral of patients with haematological cancers to their services. Our findings overlap those arising from research conducted with haematologists [22‐24], thus confirming and complementing these studies’ results. New insights we offer include SPC clinicians’ perspectives that their role is not always well understood by haematologists, as well as their perceptions of the importance of co-location of services in promoting and enhancing role clarity and closer working patterns. Improvements such as shared access to information platforms across the specialist disciplines and different care settings were described by study SPC clinicians as fundamentally necessary to enhance patient referral and integrated care delivery. The need for indicators or ‘triggers’ to promote early referral of haematological patients identified in our study has previously been reported in research from the US [26]; our UK findings reinforce these earlier reports, signalling widespread recognition of the requirement for further developments in this area.

Collaboration between disciplines was perceived as beneficial and desirable, though was said to occur less frequently than for patients with other cancers, with a range of issues influencing the likelihood of referral. Barriers largely related to the unique characteristics and pathways of haematological malignancies. Uncertainty (due to fluctuating trajectories, sudden deterioration and death, “last ditch” attempts at salvage, and indistinct transitions) was a significant barrier. Also important were the close connections between patients and the haematology team; late end of life discussions and SPC referrals; organisational issues (such as distant relationships with primary care and specialist palliative care practitioners and limitations to information platforms); lack of role clarity (perceived as “either/or”, curative or palliative) approaches to treatment; and UK policy governing access to SPC services. Facilitators included early referral to SPC services or co-working between disciplines from diagnosis; mutual understanding of roles; timely, frank discussions about prognosis and treatment cessation along with early SPC referral; access to IT platforms able to support information sharing; and the use of indicators to ‘flag’ patients requiring SPC input.

Current UK policy on commissioning palliative care services distinguishes ‘core’ (generalist) from ‘specialist’ providers [35]; in our study, the former comprise haematology staff, GPs and district nurses, and the latter SPC practitioners in hospital, community or hospice settings. The hospital palliative care specialists we interviewed described how the end of life needs of haematology patients may be met by the haematology team, and particularly the clinical nurse specialists. Although we found the extent to which this occurred unclear, another UK study has reported that haematologists considered the delivery of ‘generalist’ palliative care integral to their role, with specialist referrals being made only when they were unable to meet patients’ needs themselves [23]. Without knowledge of such patterns in care, however, it is difficult to determine whether perceptions of fewer SPC referrals reflect unmet need, or whether these needs are simply being met by others. In the UK, there is a lack of clarity around this issue; and until more is known, it is difficult to determine and quantify the extent to which specialist interventions are required.

Whilst unclear transitions and difficulties in prognostication were considered significant barriers to the timeliness of end of life discussions and palliative care referrals, many interviewees considered such characteristics should, in fact, act as triggers for advance planning. Interestingly, this has also been suggested in the context of chronic disease such as advanced heart failure, where similar complexities are reported [36, 37]. Such uncertainties were said to be a major difference between haematological malignancy pathways and those of other cancers. This was undoubtedly linked to the characteristics and pathways of the former diseases, which do not generally adhere to the traditional dichotomy of ‘curative’ and ‘palliative’ phases, with distinct delineation between the two states. Haematology subtypes may, for example, be incurable from diagnosis but manageable with intermittent or continuous chemotherapy, given with ‘life-prolonging’ intent (often late in the pathways) for disease control and to improve quality of life; or may be curable but result in rapid, unexpected death (without transition) due to haemorrhage or sepsis.

Where SPC input was warranted, late referrals were found to be challenging, particularly if the patient’s preference was to die at home, and care systems and equipment were required at short notice to facilitate this, but contact with the primary care team had been lost. The use of indicators or triggers to ‘flag up’ patients nearing the end of life and possibly requiring SPC referral was suggested as a means by which to address these issues, and the use of such systems, including dynamic prognostic tools, has been advocated by US oncologists [26]. Such interventions may, however, have little value in the context of sudden and unexpected deterioration, with the lack of key prognostic indicators, particularly for patients being treated less aggressively or with palliative intent, being a further limitation [38].

Co-working with the haematology team (from diagnosis; concurrently or intermittently; regardless of symptoms or prognosis), or early palliative care referral, were suggested as models by which late referrals could potentially be ameliorated. Such ‘upstream’ integration, which negates the need to identify the end of life phase, has been suggested by others [14, 39‐42], including the World Health Organisation [43], who state that “palliative care is applicable early in the course of an illness, in conjunction with other therapies that are intended to prolong life”. This would enable patients receiving treatment with curative intent, who may deteriorate suddenly, to begin to forge a relationship with the SPC team prior to their input being required. Other ‘best practice’ models supporting integration of palliative care into haematology settings also suggest early patient referral, as well as a collaborative multi-disciplinary approach to care [44]. Such models appear, however, to be at odds with current UK commissioning guidance, which recommends that ‘specialist’ provision should be restricted to people with ‘unresolved complex needs that cannot be met by the capability of the current team’ [35]. Limitations may also be imposed by the additional resources (e.g. adequate numbers of SPC staff) likely to be required to meet this extended role and inconsistencies in hospice policies regarding the administration of life-supporting and prolonging therapies, such as transfusions, on which many patients with haematological malignancies depend [23].

Inter-disciplinary electronic communication was considered crucially important by participants, yet was restricted by the IT systems available to practitioners within their workplace, some of which facilitated information sharing whilst others did not. A recent UK report concluded that failings in communication within and between palliative care teams in primary and secondary care was a major contributor to inadequate service provision [45]. Within England, a novel unified clinical record (the Electronic Palliative Care Coordination Systems - EPaCCS) is currently being implemented to address this deficit. This process has not been without challenge [46] and the impact EPaCCS has on future service delivery will be of interest.

The importance of mutual understanding of roles has been identified in a UK interview study that explored haematologists’ views about collaboration with palliative care services, along with the need for consistent and flexible service provision [23]. In our own study, co-location of services was considered an important means of promoting more integrated working patterns, through frequent opportunities for informal contact between clinicians that contributed to relationship building. Two non-UK qualitative studies examining barriers to SPC referral from the haematologists’ and palliative care specialists’ perspectives also show clear overlap with our findings, with difficulties identifying the end of life phase noted as a particular barrier to SPC referral [22, 26]. Interestingly, the strong patient-clinician relationship, perceived as reflective of quality care by some [47], was considered a barrier to the initiation of timely end of life discussions by others [26].

A growing body of international quantitative evidence now exists, particularly from the US, about the provision of palliative care for patients with haematological malignancies. These studies, conducted with haematologists and oncologists, also note concerns about the lack of blood transfusion provision within hospices and comment on inadequate awareness about the role of palliative care specialists [24, 48, 49]. More generally, a UK study including patients with other cancers also reported resistance to SPC and hospice referral due to the negative connotations of these services [50].

Perceptions of our interviewees about palliative care referral and the factors influencing this largely mirror those described in studies seeking to understand haematologists’ perspectives. This implies a degree of shared awareness across specialisms regarding the uniqueness of blood cancers and the issues differentiating patterns of care in these diseases from those of other cancers. It is likely that this mutual understanding will mediate future changes in practice that will facilitate improved patient care.

One strength of our study is that interviewees worked within differing SPC settings, thereby increasing the breadth of the findings. Closely matching reports from individuals working in different areas enhance the credibility of the results. Qualitative methods are suited to exploration of phenomena about which little is known [28] and the aim of purposeful sampling is to select ‘key informants’ who can provide rich description of the phenomena being studied. Our study sample yielded data that provide new insights into an important but under-researched area and sensitize readers to new ways of thinking. Representativeness is not usually a key aspiration in qualitative research, which has implications for the generalizability of findings. Instead of using the term ‘generalizability’, it is more useful to talk about the ‘transferability’ of findings in relation to their relevance for understanding similar issues and processes [31]. Extrapolation of findings should take into account any study-specific contextual factors (e.g. health-care infrastructure; universal health-care coverage etc.) that may limit transferability [51].

A range of barriers and facilitators were identified that were said to influence the likelihood of SPC referral, some of which related to the organisation and delivery of SPC services, so were amenable to change, and others relating to the complex and unique characteristics and pathways of haematological cancers. Collaboration between haematology and palliative care specialists was considered beneficial and desirable, and was said to be increasing. Further research is needed to assess the extent to which palliative care is provided by haematology doctors and nurses and other generalists and ways in which uncertainty could be used as a trigger, rather than a barrier, to referral.