The Patient Self-Determination Act (PSDA) aimed to empower patient participation in accepting or refusing treatment. Evaluation of the PSDA has highlighted the importance of advance care planning (ACP), including completion of an advance directive (AD) /living will and the naming of a health care proxy (HCP)/durable power of attorney for health care. The ACP process is essential for women with recurrent breast or gynecological cancer. These women are faced with decisions about a potentially life-threatening incurable condition. There have been a number of challenges identified with the ACP process that suggest the need for additional assessment. Further evaluation is warranted to improve our understanding of (a) the extent to which patients'social networks engage in and influence AD completion and the naming of a health care proxy, and (b) if a proxy is named, how she/he was selected. The interactions between patients and their networks must also be evaluated to determine (a) how much interaction actually takes place about ACP;and (b) the extent to which the networks are aware of the patient's preferences and the changes in preferences that may occur. Social networks have increasingly been used to represent complex structures and relational patterns. However, there has been limited research applying networks to the understanding of individual level health care decisions and to our knowledge, there are no studies that have specifically examined the role of social networks in ACP for women with cancer. Therefore, this study focuses on determining the relationship between women's social networks and ACP decisions.
The specific aims are: (1) To examine the structure and activity of the social networks of women with recurrent cancer;(2) To summarize properties of the social networks that may influence advance care planning decisions of women with recurrent cancer;and (3) To empirically model how social networks and individual characteristics affect decisions about advance care planning for women with recurrent cancer. Using a conceptual framework based on social cognitive theory, our intent is 1) to develop summary measures of social network properties that influence advance care planning and 2) use these measures to model how social networks affect decisions about advance care planning. Our multi- disciplinary team will examine the social network characteristics associated with ACP decisions among 200 female patients with recurrent breast or gynecologic cancer. Previous programs have focused on empowering patients and/or health care proxies to make decisions. We must begin to address how to enable individuals to make good quality decisions consistent with patients'preferences. Understanding the structure and influence of patient's social networks is an important step towards developing novel approaches to address the controversies in current ACP policies and programs. Our findings can provide valuable information to develop education, counseling, and support services for patients, providers, health care agents, and other family members to fulfill patient preferences and improve the quality of ACP decisions.
The advance care planning process is essential for women with recurrent breast or gynecological cancer because these women are all faced with decisions about a potentially life-threatening incurable condition and are likely to confront issues regarding continuation of life prolonging treatment. We will examine the social networks of women with recurrent cancer and the extent to which social network characteristics are associated with decisions about advance care planning. The findings can provide valuable information to develop education, counseling, and support services for patients, providers, health care agents, and other family members to fulfill patient preferences and improve the quality of advance care planning decisions.
| Clark, Melissa A; Ott, Miles; Rogers, Michelle L et al. (2017) Advance care planning as a shared endeavor: completion of ACP documents in a multidisciplinary cancer program. Psychooncology 26:67-73 |
