Background
The clinical challenge
People in the last year of life often suffer complex and multiple symptoms and distress because of their illness or impending death.1–3 Functional status often deteriorates as the illness progresses, leading to increased dependency and greater care needs.4 The families of those affected experience their own fears and losses.5
This occurs across a wide range of different life-limiting illnesses. Symptoms, distress, functional trajectories and family support needs have been most widely studied in cancer, but other life-limiting conditions (e.g. advanced cardiac and respiratory diseases, progressive neurological conditions, dementia, end-stage kidney disease and advanced liver disease) bring equally challenging symptoms and support needs.6,7 Family support is particularly important if bereavement is to be well negotiated8 and future psychological health maintained.9
As the population age distribution changes, these needs are also extending over longer time periods as the length of time living with advanced illness increases.10
Specialist palliative care: provision and inequities
Palliative care has developed to meet these complex needs of patients and families facing advanced progressive illness. It addresses physical and psychological symptoms and gives social, practical and spiritual support in the last months of life.11 The UK ranked first in the 2015 Quality of Death Index, a measure of the quality of dying across 80 countries,12 with UK hospices leading the way internationally, providing a world-leading model of excellence in palliative care.
However, the work of UK hospices – which deliver both inpatient and home-based specialist palliative care – has often come from grass-roots and local initiatives, meaning that there are marked geographical inequities in provision across England. Much of hospice and specialist palliative care is funded from the charitable sector; in 2018, charities contributed £3 for every £1 from the NHS.13 The balance between NHS and charitable funding varies markedly around the country;13 this and other factors has led to major inequities in palliative care provision.
A UK government-commissioned review into specialist palliative care14 found high levels of inequity in the provision of palliative and end-of-life care. There was diversity in the type and range of providers in any one geographical area15 and inequity in both the amount of funding (with money spent by the NHS in 2010 ranging from £186 to £6213 per person who died) and the source of funding (with the proportion funding coming from the NHS varying from 0% to 62%).14 This could not be accounted for by variations in the populations served.14
Even more marked variation in the commissioning of palliative services across England has been demonstrated more recently.16 A ‘north–south’ divide has been identified,17 with substantial differences in the average time from referral to death between providers in the north and south of England. This is important: the benefits of specialist palliative care are notably greater if delivered earlier in the illness trajectory.18
Older people and those with non-cancer diagnoses are also less likely to access specialist palliative care,19,20 often resulting in a poor match between individual needs, the resources provided to meet those needs and the health outcomes achieved.
Substantial differences in the approach to commissioning services suggests provision rather than population demographics account for a large component of the variation.16
The research gap
One major challenge in improving our ability to better match resources to needs is the lack of research into what accounts for these apparent inequities in provision and – in particular – a lack of a standardised way to assess and monitor palliative care needs. With growing constraints on resources, it is becoming imperative for individual-level needs to be mapped accurately to reduce inequities, match resources to needs and improve the quality, consistency of provision, and efficiency of palliative care. This has been endorsed as a high priority nationally,14 but there is very limited evidence available to inform the best ways to match individual-level needs to resources. Most importantly, there is no ‘standard’ way to assess, capture and report the palliative care needs of individual people with advanced illness. This programme of research directly addresses this research gap.
What we already know
Illness in the last year of life places major resource burden on the NHS. Up to 20% of healthcare expenditure is spent on the last year of life.21 Total NHS expenditure in 2017/18 was around £122B in England22 – roughly £2200 per person – indicating that around £25B per year is spent on health care in the last year of life. Much of this is on acute care, but it is estimated that palliative care is needed for about 75% of all those approaching death.23
The amount of health and social care resources spent on those in the last year of their life is increasing and will increase further in coming years. Ageing populations, greater co-morbidity and longer chronic disease trajectories are all increasing this demand.24,25 However, this is not a simple relationship; commonly used approximations of health, such as age or mortality, are not enough to capture the complex dynamics in healthcare requirements.26 Population ageing particularly increases expenditures on acute and long-term care.27 In this context, it is increasingly important to recognise palliative care needs and ensure they are effectively addressed with the best possible use of scarce resources.
Palliative care needs
Assessment of patients’ needs plays an important role in improving outcomes in palliative care. Patient-reported outcomes – where ‘outcome’ here is defined as a ‘change in current or future health status following intervention’28 – are a way of measuring the changes in patients’ health that they themselves perceive over time. These outcomes allow for assessment of intervention effectiveness. In terms of addressing needs, there is increasing evidence that home, hospital and inpatient specialist palliative care is effective and significantly improves patient outcomes, particularly for cancer patients with reduced pain and other symptoms, reduced anxiety, and reduced hospital admissions.29 Similar evidence is emerging for patients with non-malignant disease.30–32
Further systematic reviews,29,33,34 including meta-analyses and Cochrane reviews,35,36 and randomised controlled trials of specialist palliative care services30,37 provide consistent evidence of the effectiveness of palliative care services in improving symptoms, reducing family burden, improving satisfaction with care and preventing depression. There is wide acknowledgement that palliative care should be available to all, based on need not diagnosis and extending across settings,38,39 and these principles underpin the NHS End of Life Care Strategy.40
Given the complexity of problems experienced in the last year of life, it is not surprising that a high proportion of healthcare resources is spent during this time: as much as 20% of all healthcare expenditure.21 However, some of this may be poorly spent: hospital admissions may be prevented by better anticipatory symptom control, better family support and earlier facilitation of advance discussions about patient and family preferences for treatment and care.41,42 Robust studies demonstrate improved patient outcomes and reduced costs when palliative care is provided early30,37,43 and a systematic review of trials of palliative care interventions shows greatest positive impact on quality of life when these interventions are provided early.18
Casemix classifications: a potential way forward
Within health care, there is increasing use of casemix classifications to help gain a better understanding of how healthcare resources might be allocated in an equitable yet efficient way. Casemix classifications are based on patient-level criteria, which allow the grouping of patients into classes in terms of the resources needed to meet their needs.44 Casemix is defined as ‘a means to classify patients into groups in order to provide a useful measure to make meaningful performance comparisons, to cost healthcare, or to fund it’ (information from NHS Digital, licenced under the current version of the Open Government Licence).45 Casemix classifications are defined as ‘a system assigning each person [patient] into a hierarchical system of groups or classes, according to various individual casemix criteria. Each group or class is associated with higher or lower resource requirement to meet needs.’46
The USA developed such casemix classifications, including diagnosis-related groups (DRGs)47 and these have been used to develop prospective payment systems globally.48 DRGs are a useful classification of healthcare needs driven by the diagnosis, but have been shown to be inappropriate for some areas of health care, such as mental health,49 primary care50 and palliative care.46,51
Palliative care needs are not diagnosis-driven, but instead by factors such as functional status, physical symptoms and emotional burden.51 Palliative care needs a consistent method of classifying types of patients with complexity of needs, treatment and costs, using casemix criteria.52–54 Healthcare Resource Groups (HRGs) underpin the main casemix classification adopted in England.44
It is necessary therefore to identify those with more complex palliative needs and requiring more resources.55 An Australian casemix classification for palliative care was developed in 1997, empirically tested and progressively refined over time.52–54 The Australian casemix classification consists of classes defined by five criteria most strongly predictive of resource use: Phase of Illness, problem severity, functional status and dependency, age and model of care.55 Full class definition and categorizations are available at https://ahsri.uow.edu.au/pcoc/index.html (accessed 12 December 2021). Its implementation proved it was possible to consistently and routinely collect casemix data nationally;56 this has enabled consistent casemix adjustment in outcome measurement, with year-on-year improvement in outcomes at a national level and a funding model which matches patient’s needs.51,57 Palliative care funding pilots in the UK have also suggested casemix data may be useful for these purposes.58 However, it is unclear whether or not, and how, any existing palliative care classification can be easily applied to the UK to address unmet needs and reduce inequities.
What we do not know
Although casemix classifications have been widely used to manage resources across health care, they have rarely been applied to palliative care. Existing classifications (i.e. DRGs and HRGs) are based on diagnoses, but for patients receiving palliative care the priority is not on diagnosis but enhancement of well-being and quality of life, and the maintenance or maximisation of current health status in the face of advanced incurable illness.52 A palliative care casemix classification must reflect these different goals.53,54,57
Australia is the only country to have developed such a casemix classification for palliative care.57 Diagnosis and procedure criteria were found to be ineffective in classifying the complexity of needs for those receiving palliative care.53 Instead, palliative Phase of Illness and ‘problem severity’ were better indicators of increased complexity and consequent greater resource use.56,59 Despite these advances, key questions remain unanswered:
- How can the wide range of patient needs in palliative care provision best be classified across conditions and settings, so that services can be resourced to meet individual needs and deliver best outcomes? Without such a classification, it is difficult to ensure that sufficient resources can be matched to the right patient at the right time.
- Within such a classification, how is complexity best understood/captured so that commissioners can commission, and providers can deliver, the optimal mix of services?
- What are the best criteria for palliative care casemix? It is internationally acknowledged that diagnosis and procedures are not useful criteria in palliative care casemix categorisation53,57 and UK specialist palliative care providers seek a model more attuned to patient needs across wide-ranging levels of complexity.
- What are the most useful patient-level data in palliative care? There is a lack of specific patient-level data in palliative care with which to model casemix and resource use.14 This is especially true in community settings, where provision cuts across the NHS and voluntary sectors.60,61
- What evidence do we have to build on? Some work has been undertaken in recent palliative care funding pilots,58 but no evidence has been published from these to help determine which casemix criteria are optimal for use in England.
Rationale for our approach
This programme responds to these challenges by developing a palliative care casemix classification across conditions and settings. Recent UK initiatives to improve the provision of high-quality palliative care40,62 have not addressed the challenges of classifying needs and costs.
Worldwide, different palliative care funding models exist,63 but a formal palliative care casemix classification has been developed only in Australia. This Australian casemix classification incorporates functional status/dependency with problem severity and palliative Phase of Illness,57 and adopts a blended funding model.64 There is no existing palliative care classification easily transferable to the UK, but the Australian model is a valuable starting point.
This programme leads directly to patient benefit through the improved matching of resources to needs at the individual patient-level, with corresponding outcome measurement, along with more effective and cost-effective use of resources through the following work:
- the development of better patient-centred outcome measures that are relevant and meaningful for patients with advanced illness and their families
- the development of a ‘standard’ way to assess, capture, and report the palliative care needs of individual people with advanced illness
- the development of a casemix classification – casemix ‘classes’ based on individual-level criteria – which can predict the resources needed to address the symptoms/concerns of people with advanced illness needing specialist palliative care.
This approach has been directly recommended by the Palliative Care Funding Review,14 and we have liaised closely with NHS England in progressing this work.