title: Planning for the end of life: the views of older people about advance care statements.
abstract: Advance statements about medical care have been heralded by some as a solution to the problem of end of life decision making for people not able to participate in discussions about their care. Since death is now most likely to occur at the end of a long life, it is important to understand the views and values which older people express in relation to these. This paper reports on a study which used focus groups to explore older people's views about advance statements and the role these might play in end of life care decisions. Participants were 32 older people or their representatives who belonged to six diverse community groups in Sheffield, UK. Advance statements were understood primarily in terms of their potential to aid personal integrity and to help the families of older people by reducing the perceived 'burden' of their decision making. However, concerns were expressed about the perceived link between advance care statements and euthanasia, their future applicability, and the possibility that preferences for care may change. Participants also reported worries and difficulties related to thinking about and discussing death and dying. Trust between doctor and patient, built up over time, was perceived to be important in creating an environment in which the communication necessary to underpin advance care planning could take place. Lastly, participants did not perceive that during dying they would be ready necessarily to adhere to an advance statement and 'disengage' from their lives. We conclude that, rather than emphasising the completion of advance statements, it may be preferable to conceptualise advance care planning as a process of discussion and review between clinicians, patients and families.
authors.affiliation: The School of Nursing and Midwifery, The University of Sheffield, Palliative and End of Life Care Research Group, Winter St, Sheffield, Bartolmé House, S3 7ND, UK. j.e.seymour@sheffield.ac.uk
authors.forename: Jane
authors.initials: J
authors.lastname: Seymour
authors.forename: Merryn
authors.initials: M
authors.lastname: Gott
authors.forename: Gary
authors.initials: G
authors.lastname: Bellamy
authors.forename: Sam H
authors.initials: SH
authors.lastname: Ahmedzai
authors.forename: David
authors.initials: D
authors.lastname: Clark
mesh_terms: D016223:Advance Directives; D000368:Aged; D004739:England; D005260:Female; D017144:Focus Groups; D006302:Health Services Research; D006801:Humans; D008297:Male; D010347:Patient Care Planning; D010358:Patient Participation; D019452:Terminally Ill