Background
People with advanced illness should be referred to specialist palliative care (SPC) services if they have needs that cannot be addressed by usual care. Criteria for specialist palliative care referral include a diagnosis of advanced cancer, physical symptoms, low performance status, psychosocial distress, advance care planning needs, family concerns and patient request [
1]. However a consensus on referral criteria is lacking, and access to specialist palliative care is determined by the existence of any of these criteria, rather than the level of complexity of need [
2‐
4].
In the United Kingdom, palliative care is provided through both specialist and generalist services. Specialist palliative care services are those offered by multidisciplinary National Health Service (NHS) teams or hospices employing staff with the requisite qualifications and expertise to support terminally ill people and their families. Most inpatient and community specialist palliative care is provided by hospices [
5,
6], which are charity-based localised services funded mainly through charitable donations [
7]. Hospices offer a wide range of services, free-of-charge, to address the physical, psychological, social and spiritual needs of people with a terminal illness and their families. These can be inpatient, community-based or can involve attending the hospice as an outpatient or day patient. Hospices are evolving and have shifted their focus from caring for patients with cancer to the development of services for all terminally ill patients; while also seeking to offer services earlier in the illness trajectory when needed. As hospice services have developed to suit the needs of their local population and receive only partial statutory funding through local commissioning processes, there is much variability in the services offered [
7‐
9].
The term ‘complex need’ is frequently used to describe the needs of patients accessing specialist palliative care, including hospice care. There is no standard definition of complexity in palliative care, nor a distinct set of needs that are understood as ‘complex’ [
4,
10]. Rather, qualitative studies have identified potential indictors of complex needs, including number, severity and changing nature of need, alongside the interaction of multiple needs across different domains (physical, psychological, social and spiritual) [
4,
10,
11]. Communication challenges, learning disabilities and multimorbidity may increase the complexity of need [
11].
At a broader systems level, dissonance in relationships between the patient, their family and/or healthcare professionals can impact complexity [
4,
11]. Lack of engagement with services, sometimes as a result of potentially stigmatising pre-existing mental health issues or diseases, increase ‘invisible’ complexity [
4]. Lack of confidence amongst some primary care professionals in caring for patients approaching end-of-life can lead to judgements that care needs are complex, whereas professionals with more experience might not consider such needs complex, highlighting the subjective nature in making judgements about complexity of need [
11].
Researching complexity-informed approaches needs to account for the dynamic contexts, unpredictable process, and self-organizing objects (such as continuous adaptations initiated by frontline staff to allow them to complete tasks, given local demands), that disrupt the linear pathways of traditional medical care and research [
12,
13]. As a practice-based starting point to inform our understanding of complex needs in the ecology of hospice referral processes, and to inform the development of guidance, we sought to describe the documented needs of patients referred by primary and secondary care professionals to a hospice service. As referrals of complex needs are emergent and dynamic “events in systems”, [
14] we then looked to explore staff perspectives on this process.
Discussion
Previously described markers of complex need were evident in the referral documents of nearly all new patients referred to four hospice services. The vast majority had two or more needs documented; and for most, needs were recorded across two or more domains (physical, social, psychological, or spiritual). Changing dynamic needs were noted for over two-thirds of patients, and family or carer support needs recorded for half. However, complexity was hard to detail or objectively define based on referral documentation alone. Hospice staff perceived referral documents as limited tools, often prioritizing information on physical symptoms over other concerns. Referrals were viewed as influenced by the experience and confidence of the referrer and the resources available to them to directly meet the patients’ needs and diagnosis. Referrals of those with non-malignant disease were far less frequent compared to referrals of those with cancer, and hospice models of specialist palliative care for support for this group still present challenges.
It was evident that for hospice staff, the care of patients with complex needs was intrinsic to their job but was not something easily described or understood. Although referral documentation indicated complex needs for most patients, staff perceived standardised referral forms as limited, containing information of variable quality that needed skilled interpretation to ensure patients' needs could be met. The reliability of the referrer and completeness of referral information has previously been described as a source of uncertainty or bias; and lack of knowledge or experience may over or underestimate actual palliative care need [
21]. Language and lack of clear terminology is also a barrier, for instance ‘dying’ can indicate a person recently diagnosed with a terminal illness, or someone approaching end of life [
21,
22]. Our study found that language was sometimes used selectively to make a case for referral, whereby the referrer chose words or documented symptoms to make a stronger case for referral, and omitted others as less influential. Participants recognised the initial referral as only the start of a process, requiring further communication between the referrer and provider, culminating in the first assessment.
Physical needs were noted in 91% of referrals, and psychological needs in 59%. Physical needs were generally specified, with pain and fatigue most often documented. These symptoms are typical amongst those approaching end of life [
23]; though other common symptoms such as constipation [
24] appeared less frequently. Psychological symptoms were typically unspecified and lacked detail. This was because some referral forms provided structured YES/NO boxes to indicate ‘psychological support’. There is a clear need to go beyond the use of generic terms such as ‘psychological support’ and ‘emotional support’ when describing psychological needs of people with a terminal illness. Specific needs relating to anxiety, depression, anger, avoidance, collusion, and anticipatory grief alongside pre-existing mental health disorders are common and should be identified to enable appropriate support. Adding the results of screening tools for psychological problems (e.g. anxiety and depression), could further improve the quality of the referral. Social needs relating to social isolation, caring responsibilities, housing concerns or ‘other’ were noted for one-fifth of patients newly referred; however when patient and family support needs are added, nearly two-thirds of all newly referred patients had social needs documented. Tools such as the Carer Support Needs Assessment Tool (CSNAT) can be used to identify specific carer support needs [
25‐
27], and could enrich the quality of information on referral. Spiritual needs, in the broadest sense, were rarely documented, despite being important for patients and their families [
28‐
31]. This may be due partly to the inclusion of an explicit section about spiritual support needs on some but not all referral form templates. Including an open section on spiritual support needs on referral forms would allow an indication of the importance of spiritual support for the terminally ill person and would help ensure that the person is directed towards the hospice service(s) most aligned with their needs. Our PPI representative noted that the term ‘spiritual need’ should also be defined on referral forms, so that professionals, patients and families have a shared reference point.
Resource or capacity constraints in primary or secondary care settings were perceived to influence whether a SPC referral was made – with less capacity increasing the likelihood of referral. Where there is a discrepancy between the care needs of the patient and the capacity of their care providers to meet their needs (e.g. due to lack of experience, skills or time), patient needs may increase, leading to a referral to SPC services [
4,
21]. Cumulative needs [
4], which we show are common amongst people with a terminal illness, can be difficult to address within the short space of time available for a primary or secondary care consultation. Lack of confidence or experience in providing palliative care support, for instance prescribing or advance care planning [
32], may increase perceived complexity and referral for SPC [
11].
Our study highlighted ambivalences or tensions regarding the timeliness of hospice intervention alongside dilemmas about who was best placed to assess and respond. Palliative care is an approach applicable early in the course of a life-threatening illness or severe illness [
33,
34]. However, referral for SPC including hospice care tends to occur in the late stage of advanced illness [
5,
35]. Staff recognised that complex needs could occur earlier, or could be prevented with earlier intervention, though the capacity implications of offering services at an earlier stage was a concern. Research shows that quality of life of people with a terminal illness oscillates over time, and for some, distress peaks on diagnosis or recurrence [
36]. Models of early hospice support need to be developed and evaluated so that people can access SPC when their needs are greatest, irrespective of their prognosis.
Implications
Uncertainty around what complex needs are and ambivalence regarding the hospice services available are features of the current system. Despite this, we found that “complex needs,” specifically multiple needs within and across domains, are recorded in hospice referrals, though detail is often lacking. Several steps could be taken to improve the consistency of referrals. Referrers may have a history with patients, and could draw more on this knowledge when documenting the reasons for referral to ensure that the patient and their family is directed to the service that best meets their needs. Greater consideration of the non-physical needs of patients is warranted. Across all domains, where appropriate, the use of standardised screening tools and performance measures (e.g. Karnofsky Performance Status; Phase of Illness; Distress Thermometer) as a supplement to free-text information, could provide greater clarity and enable hospices to individualize services early on. Hospices could improve the referral process by ensuring that referrers are aware of the needs addressed by each available service. Palliative care specialists could offer training and support to GPs, community nurses, care-home nurses and other staff to reach all patients in need, especially those with non-malignant disease. Structured referral forms – now normal practice in all other specialties - could contain a section on palliative care provided prior to referral, clarifying what palliative care has already been offered, when and why the person is now being referred for hospice care.
Hospices are increasingly under pressure to show their ‘worth’ to commissioning groups through tangible outputs and impacts, which may contribute to a greater emphasis on more medical aspects of palliative care, which downplays the psychological, social and spiritual care provided. This may partly explain the emphasis on physical symptoms found in referral documentation. Clear communication on the interventions offered by hospices to address non-physical care needs is needed to ensure that referrers and commissioners understand the range of SPC services available, and how SPC can significantly improve quality of life for those with greatest need.
Further research is needed to develop and evaluate referral documentation that is useful and informative to both referrers and hospice service providers. We only analysed needs of those referred to hospice; future work might usefully compare the needs of those referred and those who were not referred, so that care trajectories are better understood. The ID-Pall tool has recently been developed to distinguish between needs that can be provided by non-SPC providers versus SPC [
37], further validation and testing in diverse settings is now required.
Strengths and limitations
These findings relate specifically to the hospices involved in the study, and the results are not generalizable. However, this study highlights the variation in hospice service structure and the documented needs of patients referred to each hospice. The inclusion of four sites, in three regions of the UK allowed exploration of variation. Focus groups consisted of participants from hospice settings, not primary or secondary care settings, though their inclusion in future related studies is recommended.
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.