Funding for this research was provided by:
National Institute for Health Research
Cicely Saunders International
Received: 22 May 2020
Accepted: 26 August 2020
First Online: 3 November 2020
Ethics approval and consent to participate
: The study received ethical approval from the Research Ethics Committee in Dulwich, London in England (Ref. 12/LO/0044); the ethics committees of the Mater Misericordiae University Hospital (MMUH) and Beaumont Hospital in Ireland (Ref. 1/378/1456 and Ref. 12/07, respectively); and the Institutional Review Board of the Icahn School of Medicine at Mount Sinai (Ref. GCO#11-0845) and the University of California, San Francisco (UCSF) (Ref. 13-1099) in the USA. Additionally, in England NHS research and development approval was received. If participants were agreeable to being approached, a researcher fully explained the study to them, provided an information sheet and gained written informed consent. Adults unable to give informed consent or deemed too ill to complete any part of the interview were excluded.
: Not applicable.
: We declare no conflicts of or competing interests.