Improving Palliative Care in Dementia and Cancer:
Organisation of Palliative Care – IMPACT Study
Nathan Davies1, Laura Maio1, Jill Manthorpe2 ,Sam Ahmedzai3 and Steve Iliffe1
1UCL,
Research Department of Primary Care and Population Health, Royal Free Campus,
Rowland Hill St., London, NW3 2PF
2Social Care Workforce Research Unit, King's College London, Aldwych, London, UK
3Department of Oncology, The Medical School, Beech Hill Road, Sheffield
Background
Palliative Care Model of Cancer and Dementia
Palliative care is a national priority within the UK, following the publication of the End of Life Care Strategy 1. This is reflected
internationally within several other similar key publications and national strategies. In the UK the overall death rate for cancer
was 157, 275 in 2010 and 7.6million worldwide in 20082. In 2006 over 3 million people were diagnosed with cancer and
1,703,000 million died of cancer3.With people living longer, it is thought this will be the biggest contributing factor to the
expected increase in the number of cancer diagnoses. As the number of cancer patients rises there will be an increased need for
palliative care. Despite palliative care being originally developed for cancer further improvements are needed, for example
continuity of care across settings.
Based on the themes and responses generated thus far from the interviews together with existing literature and literature reviews,
the following model of palliative care has been developed. This is a model which will continue to develop and will aid the
development and successful implementation of quality indicators.
Non PC Specialists
PC Specialist
(e.g. Geriatrician)
Within this ageing population, there is also a trend of people living longer with dementia which is expected to continually rise
to 81 million affected by 20404 and 115 million worldwide by 20505. As a progressive and eventually fatal illness, a palliative
care approach for dementia is generally accepted as the best option. Over the past decade there has been increased attention and
research into dementia and end of life care6. However, there is a general lack of research in this field7 and more research is
needed for these groups of people.
Despite the growing number of people with dementia and the fact that many palliative care services now care for non-cancer
patients, people with dementia are rarely referred to such services8. Palliative care and models of care are well established and
have long been used within cancer. However, this is still underdeveloped within dementia. Transferring these models of care
directly from cancer may be inappropriate9. With the population ageing and an upwards trend in cancer and dementia diagnoses
it is important to research and improve palliative care for both dementia and cancer.
Aim
The aim of the current research is to gain an insight into palliative care for dementia and cancer across Europe. Using this
information we aim to develop a model of palliative care for dementia and cancer which is suitable for European health care
systems. The model will be used to identify and aid the implementation of quality indicators in this field.
Generalists
Structured, iterative needs assessment & care planning, monitoring, symptom management, prognosis, diagnosis and attention to
co-morbidities, personal and family wishes, psychosocial needs
Diagnosis
and
Prognosis
Self-care
Active treatment
Rising risk
Rising complexity
End-of-life care:
Death
Bereavement
PALLIATIVE CARE
Fig 1. The basic model of palliative care in dementia and cancer.
Method
Design
A mixed methodology was used to enable the triangulation of data to develop an understanding of palliative care for dementia
and cancer with a model to fit these.
Non PC Specialists
PC Specialist
Fidelity to prior
preferences
Symptoms controlled
Family satisfaction
Appropriate setting
(home or hospital)
Psychological &
Spiritual needs met
Generalists
(e.g. Geriatrician)
Literature
reviews
Consensus
Conferences
Model of
palliative
care
Structured, iterative needs assessment & care planning, monitoring, symptom management, prognosis, diagnosis and attention to
co-morbidities, personal and family wishes, psychosocial needs
Document
Analysis
Diagnosis
and
Prognosis
Active treatment
Self-care
Rising risk
Rising complexity
End-of-life care:
Interviews
Death
Bereavement
PALLIATIVE CARE
Participants
Fifty-four interviews were conducted with professionals from palliative care such as general practitioners, nurses, researchers,
care home managers and policy leads. A further focus group was conducted consisting of six professionals from micro, meso
and macro levels of health care services. Interviews took place within five European countries including the United Kingdom,
Germany, the Netherlands, Italy and Norway.
Prior preferences established with family involvement & patient: advanced directives etc.
UK example: Liverpool
Care Pathway
Fig 2. Quality indicators of good end of life care and of a good death related to outcome.
Procedure
1.Three Literature reviews of indexed peer-reviewed publications were conducted. These are:
• Palliative care services for people with dementia: a synthesis of the literature reporting the views and experiences of
professionals and family carers
• Palliative care for people with dementia: a review of reviews
• Evaluating educational initiatives to improve palliative care for people with dementia: a narrative review of the
evidence
Evidence of care co-ordination
4. Two consensus conferences of experts from palliative care, cancer and dementia using a nominal group technique will be
conducted to evaluate and refine the model of palliative care for dementia and caner.
Generalists
(e.g. Geriatrician)
Evidence of
increased skills
Community orientation
2.The existing literature surrounding palliative care was examined including documents such as the End of Life Care Strategy,
National Dementia Strategy.
3.Face to face structured interviews or telephone interviews where face to face was not possible, were conducted with national
experts in the five European countries. Four open questions were used. These include what aspects of palliative care
professionals would wish to improve on and what they would want to export to another country. The interviews were
supplemented by the use of vignettes. The vignettes described clinical cases based on existing literature. They were used to
enhance the understanding of behaviour and attitudes in this area. Interviews were recorded for transcription or captured using
contemporaneous note taking.
Non PC Specialists
PC Specialist
Structured, iterative needs assessment & care planning, monitoring, symptom management, prognosis, diagnosis and attention to
co-morbidities, personal and family wishes, psychosocial needs
Diagnosis
and
Prognosis
Active treatment
Self-care
Rising risk
Rising complexity
End-of-life care:
Death
Bereavement
PALLIATIVE CARE
UK example: Gold Standard Framework in operation; pain control: use of
assessment tools, psychosocial needs met; Nutrition: assessed, few PEG tubes
used; Infection management agreed; Prognostication tools used
Training and
continuous learning;
audit of outcomes
Stable leadership &
workforce, staff skill mix
Analysis
Recorded interviews were transcribed verbatim and together with the notes, will be analysed using thematic analysis.
Fig 3. Quality indicators of good palliative care related to structure.
Results
Conclusions
Interview Themes
It is possible to collaborate across European countries using mixed methodologies to produce a complex model of palliative care
which is capable of aiding the development and implementation of quality indicators. This model will then be used to develop and
implement quality indicators to improve palliative care for dementia and cancer.
This is an on-going piece of research where additional participants will be interviewed to inform the continuous development of
a model of palliative care for cancer and dementia. The interviews have so far revealed a variety of themes containing what
currently work well for people dying with dementia and cancer, and what would be recommend to other countries. These
include:
Gold Standards Framework (in England)
Liverpool Care Pathway (LCP)
Doctors in nursing homes (the Netherlands)
Home care (Italy – regional differences)
In addition to what works well for people dying with dementia, the following themes have so far been identified as areas that
need improvement for people dying with dementia or cancer:
Education of staff/professionals
Need for a structured system/pathway
Diagnosis/Prognosis/Recognition of dementia
Communication between disciplines and settings
Advanced Care Planning
Coordinator/case manager
References
(1) Department of Health. End of life care strategy: promoting high quality care for all adults at the end of life. London: DH, 2008.
(2) Cancer Research UK. All cancers combined statistics - Key Facts.
http://info.cancerresearchuk.org/cancerstats/keyfacts/Allcancerscombined (Accessed 28th May 2012).
(3) Ferlay J, Autier P, Boniol M, Heanue M, Colombet M, Boyle P. Estimates of the cancer incidence and mortality in Europe in 2006.
Annals of Oncology 2007; 18: 581-92.
(4) Ferri CP, Prince M, Brayne C, Brodaty H, Fratiglioni L, Ganguli M, et al. Global prevalence of dementia: a Delphi consensus study.
Lancet 2005; 366: 2112-7.
(5) Alzheimer’s Disease International. World Alzheimer’s report, 2009. http://www.alz.co.uk/research/files/WorldAlzheimerReportExecutiveSummary.pdf (Accessed 19th September 2011).
(6) Van Der Steen JT. Dying with dementia: What we know after more than a decade of research. Journal of Alzheimer's Disease 2010; 22
(1): 37-55.
(7) Sampson EL. Palliative care for people with dementia. British Medical Bulletin 2010; 96 (1): 159-174.
(8) National Council for Palliative Care. The power of partnership: Palliative care in dementia, 2009.
(9) Sampson EL, Burns A, Richards M. Improving end-of-life care for people with dementia. British Journal of Psychiatry 2011; 199: 357-9.
The research leading to these results has received funding from the European Union's Seventh Framework Programme FP7/2011-2015 under
Grant Agreement n°258883 (see Article II.30. of the Grant Agreement).
If you would like further information please contact Nathan Davies: nathan.davies.10@ucl.ac.uk