Older lesbian perspectives on advance care planning for the end of life

Jean W Powell, University of Rhode Island


This study used grounded theory methodology and in-depth interviews with 12 older lesbians to investigate three research questions: (1) How do participants define and engage in the process of end-of-life planning? (2) Are there special issues associated with end-of-life planning that participants believe are different from those faced by heterosexual women? and (3) How do participants describe a good death and what steps might make a good death more likely? ^ The participants consisted of an ethnically diverse sample of 12 self-identified lesbian women between 60 and 80 years of age. Each participant responded to semi-structured interview questions. Each interview was audio-taped, transcribed, formatted, cleaned for errors, and imported into NVivo, a narrative data management and analysis software program. Key themes were identified through a detailed process of systematic coding and constant comparative analysis. ^ Participants characterized the process of end-of-life planning as involving four key dimensions: (1) Having a vision of late life growth; (2) Having an expectation of a long life; (3) Taking care of financial, medical and burial arrangements in advance; and (4) Having concern for significant others. Participants identified three major themes regarding specific concerns for older lesbians: (1) Illness and death are part of the human condition; (2) Lesbians must take special steps to protect their partners' interest because they are denied the legal right to marry; and (3) Lesbians who are “out” are more likely to receive social support, validation, respect, and possibly even better access to medical and social services than lesbians who are closeted. Participants characterized a good death as quick, painless, and ideally including the presence of significant others. Participants emphasized two steps that may increase the likelihood of a good death: (1) Taking care of one's business in advance; and (2) Maintaining a strong social support system. ^ Perhaps the most interesting aspect of this study is the extent to which participants did not focus on statutory advance directives, although this is the focus of scientific literature. No participant used the language of “self determination,” “informed consent” or “individual autonomy.” This suggests that how social scientists define end-of-life planning may have little relevance for people who are preparing for the death process, pointing to a need for research that begins with people's real experiences. ^

Subject Area

Gerontology|Women's Studies|Psychology, Clinical

Recommended Citation

Jean W Powell, "Older lesbian perspectives on advance care planning for the end of life" (2004). Dissertations and Master's Theses (Campus Access). Paper AAI3160037.