3.2 Palliative care delivery models

Since the initiation of modern hospice and palliative care, led by Cicely Saunders in the United Kingdom, then Vittorio Ventafridda in Europe and Balfour Mount in Canada, palliative care has evolved and is now integrated into mainstream medicine in many countries, with a network of services, the development of a medical specialty or sub-speciality, and creation of academic departments to build knowledge and practice.

In high-income countries, those aged 60 and older bear 35% of the disease burden, a disproportionately high percentage relative to the population distribution, with the leading causes all being chronic diseases (World Health Organization, 2008). As the population in developed countries ages, the disease burden will only increase further and will challenge their health-care systems. Advances in cancer and other treatments leads to patients living longer and experiencing more co-morbidities (Sullivan et al., 2011). Developed countries have to cope with the increasing demand for palliative care services amidst soaring health-care expenditures, tight budgets, and rising patient expectations (Harding et al., 2003; Harding and Higginson, 2005). Each system would have to develop and improve their current palliative care system to meet their future population’s needs. As developed countries have varied health financing and delivery structures, contrasting the different models would allow lessons to be distilled that could be applicable to other systems. Thus, palliative care has received growing attention from patients, health-care professionals, and health-care providers in recent years.

Adapted to diverse health-care systems, palliative care services have been developed in more than 100 countries throughout the world. Although originally conceived as something concerned only with the end of life, palliative care has now become more integrated, with services offered throughout the disease trajectory (see Fig. 3.2.1). This chapter considers the different service delivery models and some of the evidence of their effectiveness.

One of the challenges for palliative care is the high prevalence of conditions that need palliative care. Every year there are around 53 million deaths worldwide. Of these approximately 80% have a period of progressive illness and/or disability, when the disease becomes unresponsive to curative treatment. Murtagh et al., comparing methods of needs assessment of palliative care, identified that between 69% and 82% of those who die need palliative care (Murtagh et al., 2014). Almost every clinician in health care will encounter patients at or approaching the end of life, those with progressive and symptomatic illness, and bereaved families. Thus, because palliative care needs to be part of every clinician’s duties, and because specialist palliative care could not and may not need to expand to care for everyone who has progressive illness or is reaching the end of their life, there is often a distinction between what is called ‘generalist’ palliative care and specialist palliative care. The former concerns clinical care for all people who have progressive, life-limiting, or end-of-life conditions while specialist palliative care is offered by specialists, and is concerned with patients with the more complex needs.

Generalist palliative care is usually defined as palliative care provided for those affected by life-limiting or progressive illness as an integral part of standard clinical practice by any health-care professional that is not part of a specialist palliative care team (Shipman et al., 2008). In the community, generalist palliative care is provided by primary care teams, district nurses, nursing and residential home care staff, and other community support services. In hospitals, it is provided by general medical and surgical teams, and specialists for specific diseases or circumstances, such as oncology, respiratory, renal, intensive care, and cardiac teams (Shipman et al., 2008). Condition-specific specialist nurses often work across the interface between hospital and community (Aspinal et al., 2012).

In some countries, such as the United Kingdom, improving generalist palliative and end-of-life care has been a major focus of health policy. The UK Department of Health End of Life Care Strategy sought to ‘bring about a step change in access to high quality care for all people approaching the end of life’ in all care settings (Department of Health, 2008). This is to be achieved with a whole system and care pathway approach for commissioning and providing integrated services, improving coordination. It specifically stated that it involved workforce development including education and training for generalists as well as specialists.

Specialist palliative care is palliative care provided by those who have undergone specific training and/or accreditation in palliative care/medicine working in the context of an expert interdisciplinary team of palliative care health professionals.

Specialist palliative care may be provided by inpatient palliative care units (PCUs) or hospices, hospital palliative care teams, community palliative care or hospice teams, and paediatric specialist palliative care teams. Increasingly, specialist palliative care services need to meet standards developed nationally, work exclusively in palliative care, and have staff who have completed specialist training.

However, a distinction made on the nature of the service is not enough, there needs to be a distinction on the basis of patient and/or family circumstances and need. A common distinction is the complexity of patients and families. Generalists will provide care for everyone with less complex needs. Specialists in palliative care have a higher level of expertise in complex symptom management, spiritual support, psychosocial support, cultural support, and grief and loss support, and thus care for patients and families with the higher levels of these needs.

Specialist palliative care services usually have three components: (1) directly provide care for the more complex patients and families, (2) provide education and support to generalists, and (3) undertake or collaborate in research to improve the care for patients and families in the future. The provision of education is widely accepted as a role for specialist palliative care, although the nature and level of support is not well defined. The requirement to undertake research is more recent, and at present is not universally provided by all hospices and palliative care teams. The proportion and detailed circumstances of those patients and families with the more complex needs that require ‘specialist’ rather than ‘generalist’ palliative care is also not well defined and varies both within and between countries, and within and between diseases (Oliver and Webb, 2000; Johnson et al., 2008, 2011; To et al., 2011).

Currow and colleagues attempted to estimate population wishes for specialist palliative care, and also levels of need among people with diseases other than cancer (Currow et al., 2004, 2008). They found limited levels of unmet need for specialist palliative care according to bereaved relatives. However, the levels of unmet need depend on knowledge of what palliative care can offer, which is varied, especially in some populations and cultures (Calanzani et al., 2013). Research in specific non-cancer populations not referred to palliative care has identified levels of symptoms and problems similar to those among cancer patients who were referred to specialist care, suggesting inequity of provision exists at least in some settings and diseases (Solano et al., 2006; Murray et al., 2007; Selman et al., 2007; Harding et al., 2009; Gysels and Higginson, 2011; Bajwah et al., 2012). Daveson et al., in a population-based survey in seven European countries involving 9344 respondents, found two prominent themes in the responses to open comments: (1) a need for improved quality of end-of-life and palliative care, and access to this care for patients and families; and (2) the recognition of the importance of death and dying, the cessation of treatments to extend life unnecessarily, and the need for holistic care to include comfort and support. The public appeared to recognize the importance of death and dying and were concerned to prioritize quantity of life over quality of life, also calling for improvement in palliative and end-of-life care services (Daveson et al., 2014).

Joint working and interface between specialist and generalist palliative care is also important. The wide range of health needs of people with progressive or far advanced diseases often requires collaboration and co-working between many sectors, such as specialists in care for older people, oncology, disease specialists, and palliative, primary, and social care. Such joint models are newly emerging in many fields, such as earlier integration with oncology and palliative care—with joint clinics and other initiatives. Such models include outpatient palliative care services, integrated with oncology (Temel et al., 2010); a breathlessness support service run jointly between palliative care and respiratory medicine (Bausewein et al., 2012); and a new short-term service for patients severely affected by multiple sclerosis (MS), offered jointly between neurology and palliative care (Edmonds et al., 2010; Higginson et al., 2011).

Delivery of specialist palliative care differs slightly throughout the world but similar structures have evolved: inpatient palliative care is provided in dedicated PCUs or hospices, specialist palliative care teams offer palliative care consultations either in the hospital or in the community within home care programmes, and increasingly outpatient, day care, and respite services. The following subsections consider the most common established and emerging models, and to a limited extent their evidence base. Note that several PCUs offer a combination of services—for example, most inpatient PCUs and hospices also offer other services, such as, if they are based in the community, home care and day care, or if based in a hospital, hospital consultation. It is not that one specific service is better than or preferable to another: community support is essential as evidence consistently shows that most patients want to be cared for at home for as long as possible and often to die there (Gomes et al., 2012b, 2013b) and yet more than half of deaths in most countries occur in hospitals (Cohen et al., 2008; Gomes et al., 2012a).

The European Association for Palliative Care (EAPC), in its white paper on standards and norms, defines a PCU as a department specialized in the treatment and care of palliative care patients (Radbruch et al., 2010). It can be a stand-alone service (as with many of the inpatient hospices in the United Kingdom) or a ward or unit within or adjacent to a hospital (as is common, for example, in Germany, some parts of Canada, among others). The aim of PCUs and hospices is to alleviate disease and therapy-related discomfort and, if possible, to stabilize the status of the patient and offer patient and carers psychological and social support in a way that allows for discharge or transfer to another care setting.

In her early writing on hospices, Dame Cicely Saunders emphasized the importance of environment—that a hospice should be welcoming, calm, and cheerful, in contrast to most acute hospital wards (Saunders, 2001). St Christopher’s Hospice, founded by Dame Cicely Saunders in 1967, followed this guidance, with gardens, a welcoming atmosphere, and sense of peace and cheerfulness.

PCUs and inpatient hospices admit patients whose condition (physical, emotional, social, and spiritual) would benefit from specialist multiprofessional palliative care. Patients can be admitted for a few days to several weeks; their medical, nursing, psychosocial, or spiritual problems determine this. As mentioned earlier, these units may also provide other services.

Evidence about the effectiveness of specialist PCUs and inpatient hospices suggests that they provide benefits in terms of symptom management, and in particular higher satisfaction with the quality of care from patients and families (Higginson and Evans, 2010). Much of the early evaluation concerned St Christopher’s hospice, with quasi-experimental designs showing improved symptom management and satisfaction. Later a randomized trial of a PCU ward found few differences in symptoms but a difference in family satisfaction, although there was contamination between arms, but other studies suggested a benefit of inpatient hospices (Higginson et al., 2003; Gysels and Higginson, 2004). The satisfaction of patients and families with inpatient hospices is much higher than for conventional care, especially hospitals. A national survey of 18 000 bereaved relatives in the United Kingdom in 2011 found that inpatient hospices were reported as outstanding or excellent by 59%, contrasted with 32% for hospitals (NHS Medical Directorate End of Life Care, 2012).

The term hospice has different meanings internationally. This has partly arisen because in Latin-root languages hospice sometimes has a very similar meaning to hospital. So Balfour Mount, seeing an alternative word in French-speaking Canada, coined the word palliative, which is more often used nowadays. In many countries, for example, the United Kingdom, the function of an inpatient hospice and a PCU are similar. But, in other countries, a distinction exists—in Germany, for example, patients will be admitted to a PCU for crisis intervention and to an inpatient hospice for end-of-life care (Radbruch et al., 2010). In some countries (e.g. the United States), a hospice, in contrast to a PCU, is a free-standing service which is predominantly home care.

Consultation teams provide an additional layer of support and advice for patients and families, working with existing professionals. They can be focused predominantly on hospital patients, or patients at home or both.

Hospital palliative care support teams provide specialist palliative care advice and support to other clinical staff, patients, and their families and carers in the hospital environment (Radbruch et al., 2010). They offer formal and informal education, and liaise with other services in and out of the hospital. Hospital palliative care support teams are also known as hospital supportive care teams. A core aim is the alleviation of multiple symptoms experienced by patients, and for this the team members will advise on management and sometimes prescribe directly. Teams usually also offer support and education for existing staff, including on pain and symptom assessment and control, holistic care, and psychosocial support. They are usually involved in seeing the patients in all areas of the hospital (Radbruch et al., 2010).

Evidence regarding the effectiveness of hospital palliative care teams comes mainly from quasi-experimental studies. Outcomes considered included symptoms, quality of life, time in hospital, total length of time in palliative care, or professional changes, such as prescribing practices. Most studies indicate a small positive effect of the hospital team, compared to usual care (Higginson et al., 2002; Higginson and Evans, 2010). Multiprofessional teams with more skilled staff may offer greater benefits (Finlay et al., 2002).

Home palliative care teams provide specialized palliative care to patients who need it at home and support to their families and carers at the patient’s home. They also provide specialist advice to general practitioners (GPs), family doctors, nurses, and others caring for the patient and family at home (Radbruch et al., 2010). Commonly they reach out to patients in the community wherever they are, including in nursing and residential homes.

The home palliative care team will visit patients and their families in the community at the request of other community professionals, and provides an additional layer of support and help. It has an advisory and mentoring function, and offers its expertise in pain therapy, symptom control, palliative care, and psychosocial support (Radbruch et al., 2010). Advice and support by the home palliative care team is also provided directly to the patient and family, in particular helping with coordination of care, emotional, social, and spiritual support. The extent to which the palliative care team directly decides what treatments should be provided, or advises the GP regarding this, varies. The most usual model is to advise, but in some instances, because the case is complex or because the GP prefers this, the team takes over prescribing for the patient.

Less frequently in many settings, except home hospice care, the home palliative care team provides ‘hands-on’ direct care, sometimes taking over care (as in the hospice model in the United States) or in collaboration with the GP and other primary care workers. This model approaches that of ‘hospice’ at home—where all care is provided to patients at home (Grande et al., 2004).

There is very good evidence, from systematic reviews and original studies, regarding the benefits of home specialist palliative care teams. The most recent Cochrane review identified 23 studies, of which 16 were randomized controlled trials, including 37 561 participants and 4042 family caregivers. The patients cared for mostly had advanced cancer but some had congestive heart failure, chronic obstructive pulmonary disease, HIV/AIDS, MS, and other conditions. Meta-analysis showed that a home specialist palliative care team more than doubled the odds of dying at home compared to the conventional care (odds ratio 2.21, 95% confidence interval 1.31–3.71; P = 0.003). In addition, narrative synthesis showed evidence of small but statistically significant beneficial effects of home palliative care services compared to usual care on reducing symptom burden for patients (Gomes et al., 2013a).

Palliative outpatient clinics offer consultation for patients living at home who are able to visit the clinic. Palliative outpatient clinics can be offered from hospital or inpatient PCUs or hospitals. There is an increasing variety of such services, with outpatient services being offered jointly with oncology, respiratory medicine, or neurology services. They often meet the need to integrate services and can help to introduce patients earlier to palliative care in a non-threatening way, providing help with, for example, specific symptoms or advance care planning. To date, however, evaluations are few and these are much needed for the future.

Day hospices or day care centres are spaces in hospitals, hospices, PCUs, or the community especially designed to provide additional support to patients in the community and their families. For units that have inpatient beds, sometimes the inpatients will also attend day care, especially those who are well enough and are planning to go home. Patients are usually eligible for day care only if they are already in the care of a home palliative care team, affiliated with that particular centre. The nature of services offered varies along a continuum from the more medical/health orientated to the more social and recreational. Quite often day centres offer a variety of complementary therapies.

Evaluations regarding the comparative effectiveness of day care are limited, and those to date have not shown great benefits for the more ‘social models’ of day care, although it is possible that the outcomes may have been inadequate (Douglas et al., 2000, 2003; Higginson et al., 2010). Although patients in non-comparative studies report high satisfaction with day care, these benefits are not seen when studies use a control group or quasi-experimental design. A recent comparative evaluation of day care appeared to suggest that hope was improved, and more research on this aspect is needed (Guy et al., 2011).

A new model of specialist palliative care is developing in response to the changing needs of patients. In general, palliative care services have accepted patients and kept them ‘on their books’, even if not as inpatients, until the person died. But better integration with existing services, earlier involvement of palliative care specialists, and providing care for patients with longer trajectories of illness (in both cancer and non-cancer conditions) requires new models of palliative care. In response, the model of short-term integrated palliative care has been developed and trialled at the Cicely Saunders Institute in London and elsewhere.

First developed in the care of people with MS, the integrated service has a definite goal to see patients for a limited time, to set things in order, and then discharge them to the care of existing services. For people severely affected by MS this was usually no more than three visits/contacts. After this, 90% of those referred were discharged to local community and existing services, and 10% were referred to continuing palliative care. The outcomes at 6 weeks and 12 weeks in a phase II randomized trial, showed improved symptom control and reduced caregiver burden Higginson et al., (2006, 2008, 2009, 2011). Fig. 3.2.2 shows how the service links to others. It is an emerging model of care that now needs further evaluation in demonstration projects and trials.

Several principles are common to all the palliative care services. These include attention to the individual and total (physical, emotional, social, and spiritual) needs of the person, and considering the patient and the family as the unit of care (Saunders, 2001; Davies and Higginson, 2004a, 2004b; Radbruch et al., 2010). There is a focus on excellent communication and coordination. Gaertner and colleagues developed with local experts a template for palliative care consultations in a comprehensive cancer centre delineating detailed information of infrastructure, general underlying principles, goals of the palliative care intervention (including symptom assessment and management), and empowerment through patient participation and autonomy (Gaertner et al., 2011). These aspects are captured in some of the common outcome measures specifically developed to assess palliative care, such as the Palliative Care Outcome Scale (Bausewein et al., 2011; Higginson et al., 2012), the Edmonton Symptom Assessment Scale (Watanabe et al., 2012), and the Support Team Assessment Schedule (Bausewein et al., 2011).

Multiprofessional staffing is central to all palliative care services, as these are needed for the wide ranging problems of patients and families (Fig. 3.2.3) Davies and Higginson, (2004a, 2004b). Specialist palliative care physicians and palliative care nurses are usually part of all services but other professionals such as social workers, pharmacists, psychologists, physiotherapists, occupational therapies, and chaplains or faith leaders are often involved, especially in inpatient units. The variety of team compositions is certainly related to organizational and resource issues. However, in view of the physical, psychosocial, and spiritual needs of palliative care and its holistic approach, inclusion of professionals other than doctors and nurses should be stressed as palliative care develops for the future.

The dominant group of patients receiving palliative care services are those with advanced cancer (Gomez-Batiste et al., 2010; Duursma et al., 2011; Farquhar et al., 2011; Gaertner et al., 2012; Jongen et al., 2012; Paiva et al., 2012). More recently, newly diagnosed lung cancer (Temel et al., 2010), glioblastoma (Pace et al., 2012), and prostate cancer (Yennurajalingam et al., 2012) were the focus. Palliative care has begun to extend to include patients with non-malignant disease such as severely affected by MS (Higginson et al., 2009; Edmonds et al., 2010; Higginson et al., 2011), advanced heart failure (Schwarz et al., 2012), advanced respiratory disease or symptoms of breathlessness (Farquhar et al., 2011; Bajwah et al., 2012; Bausewein et al., 2012), or advanced chronic disease (predominantly neurological disease and cancer) (Fernandes et al., 2010).

Palliative care service delivery models operate across all the settings where patients need support. There is a distinction between general palliative care (provided by all clinicians) and specialist palliative care (provided by those with specific training and unique interest in palliative care for the more complex patients). Some models of service—home and hospital consultation teams, inpatient PCUs, and inpatient hospices—are well established and have a strong evidence base. Newly emerging models, with greater integration and short-term and outpatient palliative care, are promising and are beginning to be offered but require evaluation. Some principles and values are common, including a holistic, multi-professional approach based on need, which responds to the individual needs of the patient and their family and considers the patient and family the unit of care.