As the number of older people increases across the world, and more people approach
the end of their lives with chronic and complex conditions, the need for robust and
relevant research in palliative and end of life care has never been greater. An estimated
19 million people need palliative care worldwide each year,1 and evidence to help
provide relief from symptoms and offer support to patients and those close to them
at the end of their lives is an ongoing priority.
The UK is considered a world leader in palliative and end of life care provision and
research, and has influenced end of life care around the world.2 However, in the UK
and all the more advanced countries, there is evidence of shortfalls, highlighting
the challenges facing all countries.3 Palliative care is a high priority for the UK
National Health Service (NHS) and many other countries; several national guidelines4
have been developed over recent years. A review of end of life care in the UK5 expressed
serious concerns about a lack of research in this field and underuse of existing research.
However, research in this area is underfunded compared with studies into the prevention
and cure of life-limiting conditions. Less than 0.3% of the £500 million spent on
cancer research is allocated to palliative care,6 with funding for non-cancer conditions
likely to be even less.
Funding leading-edge, needs-led research is essential to improve palliative care across
all disease areas. Although the proportion of funding allocated to palliative care
research is historically small, funding organisations in the UK, such as the National
Institute for Health Research (NIHR) and the partners within the National Cancer Research
Institute (NCRI), are helping to address this. Alongside the NCRI, the NIHR is a large
funder of palliative care research, also offering resources and support to researchers
in the allied fields of dementia and care in the community to the sum of £5.5 m to
date.
Support from the NIHR, which funds evidence-based research to support decision-making
by clinical teams, patients, carers and policymakers, has advanced palliative care
through a growing number of studies of innovative treatments and models of care in
the past 10 years. The recent study into patient-reported improvement in breathlessness
using an integrated support service is an example of this; it has shown the potential
to improve patient quality of life and symptom control with no additional costs to
the NHS.7 This unique approach gave the first evidence of the benefits of early integration
of palliative care for patients with non-cancer conditions and has raised significant
interest internationally.
The NIHR funds an array of research programmes evaluating the effectiveness and impact
of healthcare treatments and services, supporting researchers from the formation of
their research ideas to delivery of evidence-based results to help inform national
policies. Importantly, NIHR does not fund in disease siloes. This approach is especially
suitable for palliative care, with its emphasis on the patient and family first, rather
than their disease, and with a recognition that so many patients experience multimorbidity.
All NIHR programmes encourage high quality funding applications that will lead to
benefits for patients, carers and the NHS, using either commissioned or researcher-led
work streams. More information on funding is available from the NIHR, alongside details
of how researchers, clinicians and members of the public can contribute to future
research.
In support of the national guidelines’ recommendations to target funding towards palliative
care priorities, the NIHR has collaborated with several organisations, including the
Motor Neurone Disease Association and Scottish Chief Scientist Office, by co-funding
the Palliative and end of life care Priority Setting Partnership (PeolcPSP). The PeolcPSP
was initiated by Marie Curie and is overseen by the James Lind Alliance. For the first
time in palliative care research, this collaboration enabled more than 1400 patients,
carers and healthcare professionals to identify and prioritise gaps in the existing
evidence that were most relevant to them. This produced a list of 83 questions, with
the priorities being (1) how best to provide care outside of working hours to avoid
crises and help people stay in their place of choice, and (2) how access to palliative
care services can be improved for everyone irrespective of where they live in the
UK.8
The role of funding organisations is now to support and develop research evidence
to meet the needs identified by patients and all those involved in end of life care.
In addition to the PeolcPSP initiative, the NIHR also encourages research suggestions
from patients, carers and members of the public, whose insights into conditions and
treatments are invaluable in shaping relevant and useful research.
Researchers can take full advantage of the funding and resources available from funding
bodies, including charitable, national, international sources, by ensuring that their
applications clearly demonstrate how their research will add valuable evidence, in
particular testing improved treatment and care for NHS patients. However, other barriers
to conducting research in palliative care still exist. Research in this field is challenging,
not only because sensitive topics must be discussed, but also because patients may
be clinically unstable or have complex symptoms. The recent MORECare project, funded
by the EME Programme in collaboration with the Medical Research Council, has produced
evidence-based guidance on the best methods for designing and carrying out research
in palliative care.9 One outcome of this is an e-learning component to support researchers
in developing their methodology.
A greater evidence base is also needed to develop good models of practice, particularly
in supporting generalists’ work, and in meeting patients’ wishes at the end of their
lives. For example, in the first study to explore how health professionals perceived
the transition of inpatients to palliative care, Gott et al
10 identified challenges faced by general acute staff in handling the transition.
These included difficulties in communicating palliative care needs to the patient,
and junior staff having few opportunities to input into transitional care. Such issues
need further investigation before palliative care policies can be established in acute
care settings. A step forward in assisting with this communication is the development
of the psychosocial assessment and communication evaluation (PACE) tool, helping to
support information sharing and family perceptions of patients’ symptom control in
acute care.11 With training in its use from specialist palliative care staff, acute
generalists can help improve care of patients and their families.
With respect to issues that are of key importance to patients, Addington-Hall et al
12 reported significant variations in out-of-hours care provision, with services varying
between and within primary care organisations. The gaps identified by this research
were later echoed by the collaborative PeolcPSP, highlighting the benefit of involving
patients early in research planning so models of care can take their needs into account.
Patients with palliative care needs are often admitted to hospital inappropriately
when their condition deteriorates. Yet evidence has shown that good access to 24 h
community care is likely to reduce the number of emergency hospital admissions.13
While many patients express their wishes to die at home, the GUIDE_Care project found
that two in five people with dementia die in hospital, although the increasing trend
towards hospital deaths was reversed between 2001 and 2010,14 largely due to increased
care home bed provision. Furthermore, GUIDE_Care's large-scale study investigating
place of death over a 27-year period found that nearly two-thirds of 13 million deaths
in England occurred in hospital, followed by home or care home, depending on the cause
of death.15 Funding studies such as these demonstrates how good service provision
can help patients stay in their preferred setting, while reducing the strain on overstretched
emergency departments and budgets.
Other studies underway with the potential to influence palliative care across all
disease areas include an investigation into whether early referral to specialist services
produces better outcomes for patients with advanced lung cancer (S Ahmedzai, personal
communication, 2015), and development of a support tool to enable patients to manage
pain medications in their own home (M Bennett, personal communication, 2015). Once
completed, all NIHR research outputs are open access and researchers are encouraged
to publish widely. In 2014 the NIHR also commissioned the Cochrane Palliative Care
Library to create a searchable database of existing research in the field, covering
relevant topics and a range of study designs to inform researchers’ and clinicians’
work around the world.
Research carried out in the UK continues to improve care nationally and through wide
dissemination aims to contribute valuable evidence to international palliative care
communities. Adopting an international collaborative approach to research is becoming
increasingly important to address priorities in end of life care. It is equally important
that funding bodies around the world can share lessons learned from successful funding
frameworks that support research focused on benefits for patients, their families
and those close to them.