Developing the methods and questionnaire (VOICES-SF) for a national retrospective mortality follow-back survey of palliative and end-of-life care in England.

The National Survey of Bereaved People was conducted by the Office for National Statistics on behalf of NHS England for the first time in 2011, and repeated annually thereafter. It is thought to be the first time that nationally representative data have been collected annually on the experiences of all people who have died, regardless of cause and setting, and made publicly available informing palliative and end-of-life policy, service provision and development, and practice. This paper describes the development of the questionnaire used in the survey, VOICES-SF, a short-form of the VOICES (Views Of Informal Carers-Evaluation of Services) questionnaire, adapted specifically to address the aims of the national survey.

Place of death in the population dying from diseases indicative of palliative care need: a cross-national population-level study in 14 countries.

Background: Studying where people die across countries can serve as an evidence base for health policy on end-of-life care. This study describes the place of death of people who died from diseases indicative of palliative care need in 14 countries, the association of place of death with cause of death, sociodemographic and healthcare availability characteristics in each country and the extent to which these characteristics explain country differences in the place of death.

Methods: Death certificate data for all deaths in 2008 (age ≥1 year) in Belgium, Canada, the Czech Republic, England, France, Hungary, Italy, Mexico, the Netherlands, New Zealand, South Korea, Spain (Andalusia), the USA and Wales caused by cancer, heart/renal/liver failure, chronic obstructive pulmonary disease, diseases of the nervous system or HIV/AIDS were linked with national or regional healthcare statistics (N=2,220,997).

Palliative care patients' perceptions of the work involved in understanding and managing the network of care provision surrounding them.

Objective: To explore the work carried out for cancer palliative care patients in understanding and dealing with the often large network of care provision surrounding them.

Method: Qualitative thematic analysis of interviews with 24 patients (aged 48-85 years) with 15 different types/sites of cancer and palliative care needs.

Results: The main theme of 'patient work-their strategies and project management' is presented.

The networks of care surrounding cancer palliative care patients.

Objectives: This paper explicates the nature and extent of the networks of care surrounding patients with cancer palliative care needs.

Method: Twenty-four patients with 15 different types/sites of cancer were recruited in one city in England, UK. During one in-depth interview patients identified who was 'involved in their care' and any known pathways of communication between them.

International variation in place of death of older people who died from dementia in 14 European and non-European countries.

Objectives: The objective of this study was to examine variation in place of death of older people dying from dementia in countries across 4 continents.

Design: Study of death certificate data.

Methods: We included deaths of older (65 + years) people whose underlying cause of death was a dementia-related disease (ICD-10: F01, F02, F03, G30) in Belgium, the Netherlands, England, Wales, France, Italy, Spain, Czech Republic, Hungary, New Zealand, United States, Canada, Mexico and South Korea.