Three Methods of Assessing Values for Advance Care Planning

Abstract

Advance care planning ideally includes communication about values between patients, family members, and care providers. This study examined the utility of health care values assessment tools for older adults with and without dementia. Adults aged 60 and older, with and without dementia, completed three values assessment tools-open-ended, forced-choice, and rating scale questions-and named a preferred surrogate decision maker. Responses to forced-choice items were examined at 9-month retest. Adults with and without dementia appeared equally able to respond meaningfully to questions about values regarding quality of life and health care decisions. People with dementia were generally as able as controls to respond consistently after 9 months. Although values assessment methods show promise, further item and scale development work is needed. Older adults with dementia should be included in clarifying values for advance care planning to the extent that they desire and are able. Keywords advance care planning; values; dementiaOlder adults at risk for dementia or with early dementia may be particularly interested to engage in advance care planning. Broadly speaking, advance care planning entails communicating with loved ones, health care providers, or other relevant parties to prepare for decisions that may need to be made during a time of future decisional incapacity. For older adults at risk for dementia, such planning might entail preparing for financial, residential, and/or health care eventualities. Within the health care realm, advance care planning has primarily focused on the completion of advance directives that allow individuals to designate surrogate decision makers (i.e., durable power of attorney for health care) or to document particular health care instructions (i.e., living will). However, research and clinical evidence suggests that completing advance directives-in the absence of communication about an individual's and his or her family's values, fears, and preferences -may not ultimately help to facilitate good decisions on behalf of individuals with dementia or other incapacitating illnesses (Covinsky et al., 2000;Miles, Koepp, & Weber, 1996;Teno et al., 1997).Please address correspondence to Michele J. Karel, PhD, Psychology Service 3-5-C, Brockton VA Medical Center, 940 Belmont Street, Brockton, MA 02301; Michele.Karel@va.gov.. Authors' Note: Adam Bank is now in independent practice in Weston, Florida. Armin Azar is now at the Department of Psychological and Brain Sciences, University of Louisville, Kentucky. U.S. Department of Veterans AffairsPublic Access Author manuscript J Aging Health. Author manuscript; available in PMC 2016 May 06. VA Author Manuscript VA Author Manuscript VA Author ManuscriptA process of values clarification in advance care planning recognizes both that individuals differ in health-care related beliefs and preferences and that medical decisions are made within a social context. With regard to individual differences, cultural (Blackhall, Murphy, Frank, Michel, & Aze...

How to evaluate quality of care from the perspective of people with dementia: An overview of the literature

“…Domains of keywords used in the search of the perspective on quality of care of people with dementia 114 Dementia 10(1) therefore necessary to take into account the patients' perspective. There is a growing interest in the idea that people with dementia could have a more important role than they used to have in shaping care practice (Bond, 1999;Karel, Moye, Bank, & Azar, 2007;Reid, Ryan, & Enderby, 2001). There is, however, little or no evidence on how to reflect optimally on the views and experiences of people with dementia when planning or evaluating services (Biernacki, 2000;Karel et al, 2007).…”

“…There is a growing interest in the idea that people with dementia could have a more important role than they used to have in shaping care practice (Bond, 1999;Karel, Moye, Bank, & Azar, 2007;Reid, Ryan, & Enderby, 2001). There is, however, little or no evidence on how to reflect optimally on the views and experiences of people with dementia when planning or evaluating services (Biernacki, 2000;Karel et al, 2007). In recent years, clinical and research interest in dementia has increased, including attempts to understand how a person with dementia experiences and perceives the onset of the illness and how they evaluate their quality of life (Mason, Clare, & Pistrang, 2005; see for example Clare, 2002aClare, , 2002bClare, , 2003Ettema, Dro¨es, de Lange, Mellenbergh, & Ribbe, 2005;Frank et al, 2006;Keady et al, 1995;Pearce, Clare, & Pistrang, 2002).…”

The Facilitated Values History

“…Although it is unquestionably true that most people have a "powerful desire to not be dead" (17), a growing body of research demonstrates the limits of this desire (17)(18)(19)(20)(21)(22)(23). Table 1 …”

“…Additionally, although written documents have been proposed to help competent patients consider their values (22,23), the Facilitated Values History is unique in focusing on surrogates rather than patients, attending to the emotional and moral considerations of decision making, and being implemented through conversation rather than a pen and paper exercise. As with other complex procedures, clinicians will likely increase their skills in this domain through training and practice.…”

Assessment of Capacity to Consent to Treatment

“…The first domain concerns the impact of treatment choices on valued activities and relationships (Karel, 2000;Karel, Moye, Bank, & Azar, 2007;Pearlman, Starks, Cain, & Cole, 2005). A second domain considers the individual's preferred decision-making style (autonomous, shared, deferred) -specifically whether one prefers to make decisions alone or others (i.e., family, clinicians) or to defer entirely (Blackhall, Murphy, Frank, Michel, & Azen, 1995).…”