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Living and Dying in society

Preferences/Choice

Researching 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.

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