people’s preferences and priorities for end of life care
A core value for palliative care is to empower patients
facing a life-threatening illness by providing individualised care, tailored
according to people’s preferences and priorities. The Cicely Saunders Institute
carries out a long-term research programme examining people’s preferences for place of care and death,
and what helps these to be met. Alongside, we investigate other important research
areas to improve choice regarding the care provided towards the end of life.
In a series of mortality followback surveys derived from the
QUALYCARE study, we are researching
patients and family caregivers’ preferences for place of death, assessing
changes in the last three months of life, and exploring if and how discussions take
place around prognosis and preferences. We are currently studying adults who
have died from cancer and older people (75 years and older) suffering from
non-malignant conditions in London and Brighton.
In the PRISMA survey, a population survey of 9344 adults across seven European countries, we have
used mixed methods to determine people’s preferences for information and
priorities for care, the most concerning symptoms and problems, preferences for
involvement in decision-making and place of death. The questionnaire was
adapted using a street-survey methodology in two African countries to determine
the preferences and priorities for end of life care in developing regions.
Two new projects are researching preferences and choice in
different ways around the world. DINAMO is developing an optimised model of
home palliative care based on patients and caregivers’ preferences, using a
choice experiment methodology in Portugal (one of the most ageing countries in
Europe). The IARE study is seeking
to improve the rights of older patients and their caregivers by generating
information regarding access and empowerment of people requiring specialist
palliative care in London, Dublin, New York and San Francisco.
- Higginson IJ,
Gomes B, Monteiro Calanzani N, Gao W, Bausewein C, Daveson BA et al. Priorities
for treatment, care and information if faced with serious illness: A
comparative population-based survey in seven European countries.
Palliative Medicine. 2013 May 23.
- Harding R, Simms V, Calanzani N, Higginson IJ, Hall S,
Gysels M et al. If you had less than a year
to live, would you want to know?: A seven-country European population survey of
public preferences for disclosure of poor prognosis.
Psycho-Oncology. 2013 Mar 18.
- Daveson BA, Alonso JP, Calanzani N, Ramsenthaler C, Gysels
M, Antunes B et al. Learning from the public:
citizens describe the need to improve end-of-life care access, provision and
recognition across Europe. European Journal of Public Health. 2013
- Bausewein C, Calanzani N, Daveson BA, Simon ST, Ferreira PL,
Higginson IJ et al. 'Burden to others' as a
public concern in advanced cancer: a comparative survey in seven European
countries. BMC Cancer. 2013 Mar 8;13(1):105.
- Gomes B, Calanzani N, Gysels M, Hall S, Higginson IJ. Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliative Care 2013 Feb 15; 12:7.
- Daveson BA, Bausewein C, Murtagh FE, Calanzani N, Higginson
IJ, Harding R et al. To be involved or not to be
involved: A survey of public preferences for self-involvement in
decision-making involving mental capacity (competency) within Europe.
Palliative Medicine. 2013; 27(5):418-27.
- Gomes B, Higginson IJ, Calanzani N, Cohen J, Deliens L,
Daveson BA et al. Preferences for place of
death if faced with advanced cancer: a population survey in England, Flanders,
Germany, Italy, the Netherlands, Portugal and Spain. Annals of
Oncology. 2012 Aug;23(8):2006-2015. mdr602.