Quality Palliative Care across Europe for Cancer and
Dementia: International Challenges
Nathan Davies1, Laura Maio1, Jasper Van-Riet-Paap2, Elena Mariani3, Birgit
Jaspers4, Ragni Sommerbakk 5, Daniela Grammatico 4, Jill Manthorpe6,
Yvonne Engels7, Myrra Vernooij-Dassen 2 and Steve Iliffe1
1Research
Department of Primary Care and Population Health, Royal Free Campus, UCL, UK; 2 Scientific Institute for Quality of
Healthcare (IQ healthcare), Radboud University Nijmegen Medical Centre, The Netherlands , 3University of Bologna Department of Psychology , Italy;
4Department of Palliative Medicine, University of Bonn, Germany; 5 Department of Cancer Research and Molecular Medicine, NTNU , Norway;
6Social Care Workforce Research Unit, King's College London, UK;
Background
Method
Europe’s population is ageing. Higher survival rates of people with life-threatening diseases result
Design
in a larger number of patients with multiple and complex health-threatening problems. Currently
A qualitative design was adopted using semi-structured interviews and focus groups aided by a
there are 7.7 million people with dementia in Europe and this is expected to double by 2050(1).
semi-structured interview guide.
Cancer incidence is estimated at 3.2 million per year with a mortality rate of 1.7 million/year(2).
Participants
Despite advances in the treatment of cancer, rates of incidence, mortality and morbidity are
Participants were purposively sampled from micro, meso and macro levels of organisations
expected to continually rise. These changes mean higher levels of palliative care are required(3).
working across primary, secondary, and tertiary care settings. Snow-balling methods assisted
The World Health Organization (WHO) reports that quality of palliative care for older people needs
recruitment of participants to include national experts from policy development, service delivery,
improvement, with substandard palliative care now a public health problem(4). Palliative care is now
service organisation, research and patient organisations.
at the forefront of many government initiatives worldwide such as England’s national End of Life
Procedure
Care Strategy.
Face to face interviews were conducted with participants; telephone interviews were conducted if
participants requested. The interview schedule was trialled and changed after the first interviews
Aim
As part of the IMPACT study we aimed to establish an understanding of shared European
and then adapted
iteratively as interviews progressed. The interviews were recorded with
permission from the participants and transcribed verbatim; together with the notes, they were
problems in developing and maintaining quality palliative care for cancer and dementia.
analysed using thematic analysis methods.
Results
Participants
67 interviews were completed in five European countries in 2012: 16 in England, 10 in Germany, 16 in Italy, 11 in the Netherlands and 14 in Norway. One focus group (n=7) was conducted in England.
Themes
Five themes were identified from the data:
1. Communication difficulties
2. The variation of the
between services, and
between professionals and
•
integration of services
•
Good organisation and service
•
Many profs felt that there was so little
Differences between the eligibility
definitions, knowledge, skills
time to perform their duties that some
and inclusiveness
activities were hard to accomplish,
When should we begin palliative
such as spending time with patients,
care?
making home visits, both of which
In cancer when does palliative
were accepted to be part of a good
palliative care approach.
of funding for people with cancer
As a multi-professional service
lacking across all five countries
and people with dementia.
Dementia is often seen as neither
•
•
Cancer is being prioritised and
communication amongst all
solely a medical nor social
dementia is being left behind in
professionals, participants
condition, it requires cooperation
the views of many professionals.
care take over from curative
acknowledged this was often
of both health and social care
Funding systems are complex and
treatment?
lacking.
systems.
•
•
5. Time constraints
care, including boundaries,
integration were perceived as
•
4. Problematic processes of
palliative care services
patients and their families
palliative care requires good
•
3. Difficulties in funding
difficult to navigate.
•
•
When palliative care is introduced
Generalist and Specialist palliative
when does it become specialist or
with someone who has dementia
care services need to work with
should it become specialist?
and the effects this then had on
one another to allow for
care and treatment.
collaboration of skills, knowledge
poorly understood, with confusion
[palliative care] is prioritized in [health
and information.
still about what the different terms
care] institutions. There is increased
of “palliative care”, “basic
focus on it, but it is still not part of the
palliative care” and “specialist
daily clinical life in the medical wards.
Concerns about communicating
•
“[...] the entire chaotic organisation,
and all those financial arrangements
[...] it is all so complicated.”
The remit of palliative care was
palliative care” actually are.
“The area that needs to be improved
the most is the way in which it
Talking with patients, spending time
with the patients, caring for the
(Regional Head of Palliative care,
patients, all this is rationalized away in
the Netherlands)
our system. Clinicians working in
“[W]ell, it is difficult for the healthcare
“[T]hey don’t warn either the person
but more specifically the relatives and
the carers that dementia is a disease
that you’re dying of”
(GP, England)
system and the social system to set
up palliative care projects
together...everything is social or
healthcare related, and working
together is still difficult”
palliative care do an important job in
“But all settings and actors in the field
including health insurers and other
“[I wouldn’t recommend] a strategy
funding bodies are that much
adopted by the oncologists in our, in
focussed on cancer patients that it is
my healthcare system, that doesn’t
really difficult”
understand when it is time to stop in
(Palliative Care Nurse, Germany)
terms of treatments”
(Geriatrician, Italy)
(Hospice Director, Italy)
trying to get this on the agenda. On
the other hand, I think there is a lot of
knowledge about this out there
[among clinicians], but there just isn’t
time to prioritize it. ” (Oncologist,
Norway)
Conclusions
Participants from all five countries confirmed that the quality of palliative care for cancer patients was much better and better organised than for people with dementia. The problems identified by
participants were relatively simple, but behind clear descriptions may lay deeper issues that are more difficult to express. We consider that delving below the face value of participants’ accounts may
help to explain the pervasiveness of problems with palliative care, and the variations within it for people with different diseases.
References
(3) Sternsward, J., & Clark, D. (2004). Palliative Medicine - a global perspective. In D. Doyle, G. Hanks, N. Cherny & K. Calman (Eds.), Oxford Textbook of Palliative
(1)Alzheimer Europe. (2009). Prevalence of dementia in Europe Alzheimer Retrieved 10/01/2013, from
Medicine (pp. 1119-1224). Oxford: Oxford University Press
http://www.alzheimer-europe.org/Research/European-Collaboration-on-Dementia/Prevalence-of-dementia/Prevalence-of-dementia-in-Europe
(4) World Health Organisation. Better Palliative Care for Older People. 2004
(2) Ferlay, J., Autier, P., Boniol, M., Heanue, M., Colombet, M., & Boyle, P. (2007). Estimates of the cancer incidence and mortality in Europe in 2006. Annals of Oncology, 18(3),
Funding source: This research has received funding from the [European Union's] [European Atomic Energy Community's] Seventh Framework Programme ([FP7/2007-2013]
581-592.
[FP7/2007-2011]) under grant agreement n°[258883] .
If you would like further information please contact Nathan Davies: nathan.davies.10@ucl.ac.uk