Family matters: A social systems perspective on physician-assisted suicide and the older adult

Department of Psychiatry, University of Rochester Medical Center, 300 Crittenden Boulevard, Rochester, New York 14642, USA.
Psychology Public Policy and Law (Impact Factor: 1.93). 07/2000; 6(2):434-51. DOI: 10.1037/1076-8971.6.2.434
Source: PubMed


Physician-assisted suicide is one of the most controversial issues facing health care providers today, provoking contentious debate that spans medical, psychological, legal, religious, and moral realms. Despite the wealth of theories and opinions proffered, most of this work focuses on concepts of individual competence and autonomy, with little or no attention paid to the dynamics of family or other psychosocial systems likely to affect an individual's decision to ask for assistance in ending his or her life. Moreover, concepts such as "autonomy" typically are examined from a legal perspective without consideration of the late-life developmental themes confronting older adults and their families, that is, the stages of life cycle transition and the predictable family stresses that typically accompany serious illness.

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    • "The family-centered model recognizes that the individual operates within the context of the family system; the influence of family members must be taken into account in regard to making decisions about end-of-life care (Allen & Shuster, 2002; King et al., 2000). In a qualitative study, Moore, Sparr, Sherman, and Avery (2003) examined the decision-making process for older adults regarding end-of-life care and found prior experience with proxy decision making to be associated with preference for a family-centered approach. "
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    ABSTRACT: We examined race/ethnicity and cultural context within hypothetical end-of-life medical decision scenarios and its influence on patient-proxy agreement. Family dyads consisting of an older adult and 1 family member, typically an adult child, responded to questions regarding the older adult's preferences for cardiopulmonary resuscitation, artificial feeding and fluids, and palliative care in hypothetical illness scenarios. The responses of 34 Caucasian dyads and 30 African American dyads were compared to determine the extent to which family members could accurately predict the treatment preferences of their older relative. We found higher treatment preference agreement among African American dyads compared with Caucasian dyads when considering overall raw difference scores (i.e., overtreatment errors can compensate for undertreatment errors). Prior advance care planning moderated the effect such that lower levels of advance care planning predicted undertreatment errors among African American proxies and overtreatment errors among Caucasian proxies. In contrast, no racial/ethnic differences in treatment preference agreement were found within absolute difference scores (i.e., total error, regardless of the direction of error). This project is one of the first to examine the mediators and moderators of dyadic racial/cultural differences in treatment preference agreement for end-of-life care in hypothetical illness scenarios. Future studies should use mixed method approaches to explore underlying factors for racial differences in patient-proxy agreement as a basis for developing culturally sensitive interventions to reduce racial disparities in end-of-life care options.
    The Gerontologist 04/2010; 50(2):226-37. DOI:10.1093/geront/gnp166 · 3.21 Impact Factor
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    • "First, addressing the concern that advance directives are meant to limit treatment, educational attempts to encourage formal advance care plans should focus more on their ability to guarantee desired treatment. Second, ample evidence exists to suggest that patients, rather than clinging to autonomy, prefer to make end-of-life and other critical life decisions within a family context (Allen & Shuster, in press; King et al., 2000; Puchalski et al., 2000). The implication is that the individual execution of advance directives may satisfy the legal community but few others. "
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    ABSTRACT: Family members are involved in every aspect of end-of-life decision making and care. The present article reviews family involvement in providing care during chronic and terminal illness, in discussions and plans for advance directives, in decision making during chronic illness, in executing advance directives and making critical decisions near the end of life, and the long-lasting effects of caregiving and difficult decisions on the family member during bereavement. Although legal standards and much of the research on end of life emphasize individual decision making and the value of autonomy, end-of-life care and decisions should be increasingly understood within a family context. There is also increasing need to study how issues of race, ethnicity, and culture affect end-of-life care and decisions within families.
    American Behavioral Scientist 10/2002; 46(2):284-298. DOI:10.1177/000276402236680 · 0.69 Impact Factor
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    • "We also recommend use of additional standardized measures and clinical interviews with patients and proxies facing end-of-life treatment decisions (King et al., 2000; Werth et al., 2000). In our ongoing palliative care and hospice project, we have found that interviews up to 40 minutes in length are well tolerated by patients. "
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    ABSTRACT: Psychology as a profession has entered the arena of palliative and hospice care later in the process than other health care professions. Through the use of Familial Advance Planning Evaluations (FAPEs), however, psychologists can assist individuals and families in facing end-of-life transitions in important ways. Hospice and palliative care philosophy treats the patient and family as the unit of care. End-of-life decision-making is therefore a family matter as well as a normative developmental transition. Yet, little is known about the decision-making process. This paper reviews the literature regarding informed consent, advance care planning, and proxy decision-making and outlines a theoretical model for familial decision-making. Previous models of end-of-life capacity evaluations and family assessments are presented and serve as the basis for a comprehensive assessment of familial decision-making at the end of life. Functional capacity evaluations of individuals at the end of life regarding decisions about life-sustaining medical treatments enable both the individual patient and one identified proxy from his or her family to discuss important issues families may face during medical crises at the end of life. The information gleaned from such evaluations has the potential to assist psychologists and other professionals in designing family-specific interventions to reduce caregiving distress, improve quality of life for dying patients, and ease the transition to bereavement for caregivers.
    Behavioral Sciences & the Law 05/2002; 20(3):235-52. DOI:10.1002/bsl.484 · 0.96 Impact Factor
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