Introduction
The framework for Australian palliative care is outlined in the Palliative Care Service Development Guidelines. [1] Not all people at end of life will need specialist palliative care but a palliative approach or palliative care should be available when and where it is required. [1] A model of care broadly defines the way health services are organised and delivered. [2,3] The chosen model of care can affect the quality of the care. [4] Various models for palliative care delivery and their components exist [2-6] without a universally accepted model. [7] However, models of palliative care appear to show benefits for patients and their carers, with no evidence of negative effects, irrespective of setting or characteristics of the person. [3] The degree of integration among settings, specialties, and services is a key system feature that influences both the quality of care delivered and the outcomes. [8]
Quality Statement
There is a lack of well-designed randomised controlled trials comparing models of palliative care, or even with usual care. Systematic reviews often focus on service elements rather than models of care. Many studies do not focus on an older adult population or do not clearly report the attributes of the study population. Comparison of different models of care is hampered by the diversity of definitions, descriptions, components and outcome measures. The evidence relating to models of palliative care in the community and residential aged care is emerging. [6,8,9]
Appraised as high-quality were three Cochrane reviews [10-12] and nine other reviews. [2,3,6-8,11-14] Other reviews were of acceptable or low quality, predominantly due to the methodology and quality of reporting. [15-26] One paper [27] of low quality and not a rigorous systematic review, was included for context as it offers opinion regarding service modelling for Australia’s indigenous population. Two international consensus papers were also included. [28,29] Other sources were included to provide context. [30-33]
Evidence Synthesis
Various models for palliative care delivery and their components are found in the literature. [2,3,5,8,9] Effective models are becoming increasingly important as the population ages and an increasing number of people live with multiple chronic and life-limiting illnesses. [2,3,8,9,15] There has been a rapid growth in specialist and generalist palliative care service provision with a range of models of palliative care service provision being developed and implemented internationally. [3,5] Models need to be dynamic to respond to the changing population demands (including the needs of vulnerable populations), the health system structure and the policy, sociocultural and economic context. [3,5,13,30]
Models of care
A palliative approach and general palliative care can be delivered in many settings and by a variety of professionals, including specialists as well as generalists (GPs, nurses, nurse practitioners, allied health professionals, and carers, and volunteers. [1,3,5,8,30] Specialist palliative care can be delivered in settings such as general hospital wards, dedicated palliative care hospital wards, hospices and in the community. [5,30] Palliative care teams generally include at least one professional with advanced training in palliative medicine. [30] A systematic review of reviews concludes that irrespective of setting or patient characteristics, models of palliative care appear to show benefits for patients and their carers, with no evidence of negative effects. [3]
The following models and proposed definitions are found in the literature:
Integrated model
Integrated care usually includes elements of case management, capability building, specialist in-reach, shared care, specialist outreach and integrated care. These elements of themselves often describe a model of care and hence integrated care might be regarded as an umbrella model. The World Health Organisation (WHO) endorses integrated palliative care. [14,28] The practice of integrated care involves collaboration and cooperation between providers and services and occurs across primary, secondary and tertiary care, and extends beyond a person’s regular medical home or single provider. This coordination can occur through regular meetings, briefings or updates and there is support for a central point of contact being an effective facilitator. [14]
Consultation model
Consultation model is an approach whereby specialist advice is provided for clinical care, care planning and coordination, and to support complex medical decision-making and bereavement services where appropriate. [1,2,5] Advice can be provided without the specialist necessarily being directly involved in care. [2] The consultation is sometimes combined with the liaison model but there is no published evidence.
Liaison model
Liaison model combines the education of the individual in palliative care with educational outreach and clinical support for primary care practitioners. This model may be more appropriate where there is variable capacity to manage chronic and life-limiting illness. [2]
Pop-up model
Palliative needs in rural areas can be specific or intermittent and a permanent infrastructure may not be warranted. A pop-up model can recognise gaps in local services and be used to respond to specific palliative needs. [2]
Shared care
Shared care model implies monitoring and sharing of information in the planned delivery of care between health professionals with joint responsibility for a person’s care. This model was originally developed to extend palliative care to rural/remote adult services. The focus of this approach is to effectively communicate and coordinate care approaches with a rapid-needs response. Shared care has different definitions and is also described as an effective element of palliative care delivery used in a number of models. [2]
Team-based (multi-disciplinary) model
The 2016 WHO Definition of Palliative Care includes “Palliative care … uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated …” [31] The traditional concept of palliative care was based on the hospice model of care developed in the United Kingdom in the 1960s whereby care is provided by specialist multidisciplinary teams, often in purpose-built facilities, primarily to people with advanced cancer at the end of life. [32] WHO and Palliative Care Australia (PCA) recognise that the wide range of health needs of older people often requires joint working between many sectors, in the palliative, primary and social care of older people. [1,5] WHO recognises that for older people to be cared for in their place of choice and for transition care to be well-managed, health care professionals in community settings need to be involved and well-trained. [5] WHO recommends coordination between specialists in palliative care and in geriatrics. [31]
Trajectory model
People with serious chronic illnesses and unpredictable times of death, and their families often need support over a long period. The trajectory model offers a way to support their intermittent needs, and simple or complex ongoing needs, and build towards palliation being the focus of care. [1,15] Care under this model starts early, following a timely referral, even concurrently with potentially curative treatment. [15] It can also assist a family to cope with the illness and bereavement. [16]
Research into models of care
The most recent review of service delivery models to maximise quality of life for older people at the end of life found that the Integrated Geriatric Care and Integrated Palliative Care models improved quality of life. [8] Both models focus on improving function, reducing decline and reducing symptoms with the former focussing on quality of life in an earlier trajectory of functional decline and the latter at later stages including dying. [8] Multidisciplinary teams (three or more disciplines) were common and seen as necessary to maximise function and optimally manage symptoms and concerns. [8]
The European Integrated Palliative Care in cancer and chronic conditions (InSup-C) project found integrated palliative care was better developed for patients with advanced cancer than those with heart failure and COPD. [28] The impact, if any, of confidence in prognostication or time to death on this outcome was not commented on but might be expected to have some influence (expert opinion). They also found a need for undergraduate palliative care education, raising public awareness of palliative care and its integration with healthcare, and clarifying and simplifying the language and terms used. [28]
Luckett et al. [2] note significant heterogeneity with the configuration and description of models of care in the included studies. They redirected their synthesis away from whole models of care and focussed on the attributes of effective palliative care and the service elements (defined by setting and population) as they were the consistent feature in the literature.
Brereton et al. [3] in a systematic review of reviews, also notes the significant heterogeneity in definitions and components of models of care, hampered by the lack of detail and clarity in description of the models. Like Luckett et al. [2] these authors note that models of care are often classified with reference to the setting in which they are delivered.
To date, a univocally-agreed model of care for palliative care does not exist. [7] A European consortium has proposed a framework for integrated palliative care which pulls together existing validated elements of care. The important components of this framework are a multidisciplinary team trained in palliative care with a threefold focus: on treatment (of physical and psychological symptoms), consultation (discussions of care planning and care goals) and ongoing training. [7]
Existing systematic reviews often focus more on service components such as setting, attributes and service elements rather than models of care. [2] Reviews which consider models of care, generally focus on a comparison of models of care rather than an analysis of a particular model of care.
One analysis solely investigated the team-based model of care. The authors define team membership as including at minimum a physician and nurse, with at least one having specialist training and/or experience in end-of-life care. [4] Of the ten studies included only one involved a geriatrician, and most included both end-of-life care physicians and nurses. The authors conclude that a comprehensive, direct-contact, team-based model of care (for older people with estimated survival of up to 9 months) improves carer satisfaction and increases the odds of dying at home while decreasing the odds of dying in a nursing home. [4] If initiated early (24 months before death), this model of care improves patient quality of life, symptom management, and patient satisfaction. [4] No impact on hospital admissions or hospital length of stay is noted. [4]
Models of care in different settings
Models are often classified with reference to the setting in which they are delivered, frequently describing home-based palliative care or models that are delivered across care settings (i.e. home, hospital or inpatient hospice). [1,3,5,8,9]
Care in the community
Models of palliative care often support home-based end-of-life care, supporting family carers and community health professionals and avoiding futile treatments. [1,2] The most important characteristics of such a model is the support of communication and coordination, as well as upskilling of primary health care team members with the use of advance care planning to clarify goals of care. [2]
Home care
Community palliative care can reduce general health care use and increase family and patient satisfaction with care, which support families to sustain patient care at home. [3,5] Involvement of a multidisciplinary team of nurses, doctors, psychologists/counsellors, social workers and trained volunteers or community health workers is ideal. [1,5] WHO recognises that for older people to be cared for in their place of choice and for transition care to be well-managed, health care professionals in community settings need to be involved and well-trained. [5] There are indications that it increases the chance of home deaths and should be provided for those who wish to die at home but this research is not specific to the care of older people. [3,10,13] Gomes et al. [10] found reliable evidence that home palliative care increases the chance of dying at home and reduces symptom burden in particular for patients with cancer. Acknowledging that family carers consider home nursing as an important but costly service, Luckett et al. [13] investigated specialist palliative care services offering home nursing. They found evidence to be inconclusive that specialist palliative care services (SPCSs) that offer home nursing increase the rate of home deaths without compromising symptoms/QOL or increasing costs. [13] A review by Candy et al. [17] indicates that specialist palliative care delivered at home is associated with a lower likelihood of the person being hospitalised, lower health care costs and a reduced likelihood of hospital being the place of death. These authors also indicate that families felt more supported and patients less isolated when supported by specialist palliative care at home. [17]
Residential aged care facilities (RACF)
Residential aged care facilities (RACF) provide palliative care. Despite the increasing demand in response to the increase in the older population, there is very little high-quality research about what aspects of palliative care best support residents and their families. [12] Palliative care in a RACF requires effective integration between different providers. Barriers (e.g. high staff turnover, lack of access to training) and facilitators (e.g. manager support) for integration have been identified, but there is limited evidence about an effective integrated model. [18] As with all settings, appropriate outcome measures are required to assess the quality of palliative care provided in residential aged care facilities. [12,19]
Residential aged care has been shown to be a particularly challenging setting in which to deliver palliative care. [2] Studies demonstrate that older adults are less likely to be referred for consultation from palliative care services and symptom management is likely to be poor. [20] In a Cochrane review of palliative care interventions for older adults in aged care services [12], it was identified that communication strategies, integrated palliative care leadership teams and symptom control strategies need to be core components of a palliative care model in this setting.
A recent White Paper (2020) from the European Association for Palliative Care describes a framework of recommendations to guide the implementation of improvements to palliative care in RACFs and draws on the Palliative Care for Older People (PACE) study. [6,21,33] The framework maps twenty recommendations to three levels of governance domains (within an organisation, across organisations, national/regional) and three stages of implementation (preparation, implementation and sustaining change). [6] The recommendations include: (a) broad awareness of palliative care, (b) creation of a culture of ongoing staff development with a commitment to educational opportunities and resource allocation, (c) the implementation of palliative care practice with sustained support to embed practices into daily care.
A recent scoping review found that four main models of palliative care have been developed and reported in the literature for use in residential aged care (RAC): [9]
- external specialist end-of-life care model whereby palliative care is delivered by an external specialist palliative care team for a resident in the terminal phase. This model is limiting in terms of general access to quality palliative care for all residents, palliative care prior to the terminal phase and limits continuity of care. However, it has been shown to lower hospitalisation rates and improve family members’ ratings of the care that residents received at end of life.
- in-house end-of-life care whereby terminal care is provided by trained aged care staff.
- in-house capacity building within a palliative approach whereby trained aged care staff provide palliative care to all residents, not only those in the last few months of life. The important capacity-building activities are: (a) the development of leaders or champions (b) education of all staff about a palliative approach to care and (c) ongoing checks to monitor progress with a feedback mechanism for continual improvement. Evaluation of this model has shown improved staff retention rates and family satisfaction, higher completion rates of documented cardiopulmonary resuscitation and ACP, and fewer hospitalisations.
- in-house capacity building with external support from palliative specialists, which is a hybrid of the first and third model. This type of model is consistent with the Gold Standards Framework and has been associated with decreased rates of inappropriate hospital use, the use of palliative care case conferences and a care pathway, and higher rates of medical visits in the last week of life. External support can include nurse practitioners or doctors, specialist nurses, hospice staff, paramedics or a combination.
Training and upskilling were common to all models; particularly training in the management of pain, dyspnoea, fatigue, anxiety, delirium, nausea/vomiting, irregular bowel functioning, oral care and depression and for the recognition of deterioration and of residents who are actively dying. Learning experiences such as careworkers shadowing hospice workers helped careworkers to be more comfortable talking about death and dying with other staff, residents and family members. [9]
Capacity building, common to Models 3 and 4, supports change and improvement to practice. [9] This can include the development of palliative care champion(s) within the RACF team, regular debriefing and case conferencing, and external mentoring to augment training.
Palliative care day centre
Care via a palliative care day centre can play an important social role (e.g. providing food and companionship) or rehabilitative function (e.g. physiotherapy or occupational therapy). [5] Systematic reviews demonstrate that attendance at these provides a positive experience, yet evidence is lacking in terms of clinical effectiveness and effect on wellbeing. [22,23] Stevens et al. [23] report the benefits of this care through engagement with others and support in a restorative environment. Bradley et al. [22] report the benefits of this care as reduced isolation, increased social support, enhanced communication and provision of activities. These factors appear to influence psychosocial aspects of care: one’s sense of control, support, purpose, achievement, coping, hope and self-esteem. [22]
Transition care
Models of care that can manage challenges such as transitions between home, aged care and acute care settings are particularly important. Support should be provided to avoid lack of awareness that a palliative approach has been employed and avoid initiation of treatments in acute care intended to prolong life, but ultimately causing negative effects on quality of life for the individual. [2] While an integrated approach in rural and remote areas would also seem to be the most logical, location has been identified as a key barrier to the likelihood of integrated services and optimal palliative care approach. [24]
Care in acute care
Over the past 15 years, there has been a threefold increase in the number of palliative care teams in inpatient hospital settings. [20] When models of palliative care are executed in acute care, they are largely consultative services in the form of a specialist palliative care team, which largely focus on discussion for goals of care, prognosis and symptom management. Consultative services of this nature have been shown to improve symptom control and quality of life as well as increase overall satisfaction with services. [2,20]
People receiving palliative care in the community may be admitted to acute care as emergency admissions following a sudden decline in health or emergence of new symptoms. [1] Despite the best intentions, older adults who should be receiving palliative care are often crisis managed in acute care. [2] Where palliative care is delivered in a coordinated model, unnecessary emergency admissions and unwanted life-prolonging treatment can be avoided. [2,20,25] as can admissions to intensive care. [26]
Preparation for hospital discharge for patients with life-limiting illness is often complex due to the unpredictable illness trajectory, shifting goals of care, and availability of resources to meet a person’s needs. [20] However, discharge planning can help continuity of care when it provides relevant information and advice to the person living with a life-limiting illness, their family and carers, as well as the health professionals with ongoing responsibility for their care. [1] Advance-care planning conversations (about prognosis, goals, and care preferences) and the logistics of when and how to contact palliative care specialists are important for nurses, patients, and family carers alike. Discussions about prognosis need to be clear and concise to help patients and family carers decide if a homecare or residential aged care is the best place after hospitalisation of an older person with a serious or life-limiting illness. Extensive and complete discharge planning with post-discharge support of palliative care patients is needed to maintain care continuity. [20]
Fonseca et al. [26] explored the experience of palliative care for older adults in an intensive care unit. They suggest there is a disconnect in focus within the acute care setting, where preservation of life is the health care goal and may be at conflict with a palliative approach. Involvement of a palliative care team in the ICU setting can improve overall satisfaction and increase relative participation in decision-making. [26]
Inpatient designated palliative care
Inpatient designated palliative care beds can include beds in a rural community hospital, designated beds in a teaching hospital or a purpose-built hospice. Various initiatives have been developed in targeting systemic approaches for end-of-life care, which have largely been based on care received by people in a hospice setting. [11] It is therefore important for policy to be designed for the relevant geographical context and recognising limitations and training needs. Currently no one agreed design of pathway or framework exists for palliative aged care services. [11] Currently there are no systematic reviews evaluating palliative care of older adults specifically in a hospice setting.
Driving policy which would assist in overcoming barriers to collaborative working
Collaborative working, within any model, is identified as the ideal in palliative care, but barriers exist in the implementation. Barriers to integrated care are discussed in reviews by Procter [24] and Dalgaard et al. [16] One barrier is the reluctance by clinicians and, in some cases, the person receiving care, to discuss end-of-life care. It is not easy to determine when a disease moves into palliative stages but lack of discussion hampers referrals to other key agents in palliative care. [16]
Siouta et al. [7] suggests caution should be taken in implementing generic models or frameworks without tailoring it to the context within which it is to be delivered. This is particularly true for culturally and linguistically diverse groups. [27] End-of-life care should be individualised and inclusive to address their physical, emotional, social and spiritual needs. Using satellite services to better serve rural and remote areas and employing health care workers with whom minority groups can identify with may assist in people accessing mainstream services and maintaining contact for duration of care. [27]
Funding models and cost effectiveness have not been the focus of sustained research. A recent review has highlighted the need for funding mechanisms to be well understood and used with caution to ensure best practice and minimise perverse incentives. [29]
To date, a univocally agreed model of care for palliative care does not exist as such. [7] Of all the elements of palliative care service models, case management has been found to be the most common feature of successful models. [2]
Evidence Gaps
- Our understanding of models of care in palliative care is limited. There is a need for well-designed and well-reported research comparing models of palliative care with each another, or with usual care.
- Future research could identify which models are more appropriate for older people and whether this affects the setting of care.
- More research is required to understand the costs, effectiveness, outcomes and benefits of palliative care delivered in residential aged care facilities as more providers are involved.
- Future research could help understand which models of care are culturally responsive and which best support vulnerable older Australians (e.g. people living with dementia, rural or remote communities, indigenous Australians) and specific disease groups.
- The cost-effectiveness of the different models of palliative care has a low evidence base.
- Future research could help determine the cost-effectiveness and optimal format of pre-service training or continual professional development.
Page updated 30 June 2021