Does one person provide it all? Primary support and advanced care planning for women with cancer

We challenged a common clinical assumption that female cancer patients designate the same individual who provides them with primary support in advanced care planning roles.

During 6 months, we conducted a survey of female cancer patients seen in a women's oncology program. Women were asked to name their health care proxy (HCP), emergency contact (EC), and primary support, and to define their own meaning of primary support. The person identified by chart review (C-ID) as that patient's primary contact was also abstracted. The frequency that the same person served all three roles was determined. Concordance between the C-ID and surveyed responses was calculated.

Two hundred fifteen (98%) of 219 women agreed to participate. The median age was 58 years (range, 29 to 85 years). Women were surveyed a median of 14.3 months since diagnosis (range, 0.3 to 214 months). Although 80.4% of women surveyed named a first-degree relative to fill all three roles, only 56.7% of respondents identified the same individual for each of these roles. For those in relationships, 54% named their partner in all three roles. The majority of women characterized support as emotional (46.7%) or as emotional and structural (22.6%). Concordance was strongest between the C-ID and both EC and HCP.

More than 40% of women with cancer in our sample did not name the same person for support and for advanced care planning roles. We also discovered a lack of uniformity in definitions of primary support. The implications of these findings on decision making and outcomes in women with cancer require additional study.