Decision-Making Capacity and Individual Choices
Providing high-quality care for nursing home residents means putting into practice the various competence-enhancing interventions we have considered relating to personal control and communication. Doing so means that residents participate in making decisions about their care. But how can we make sure that residents understand what they are
175 being asked to decide, especially when a majority of them have cognitive impairment?
The need to address this question became apparent in 1991 with the enactment of the Patient SelfDetermination Act (PSDA). This law mandated that all facilities receiving Medicare and Medicaid funds comply with five requirements regarding advance care planning, referred to as advance directives (Emanuel, 2008): providing written information to people at the time of their admission about their right to make medical treatment decisions and to formulate advance directives (i. e., decisions about life-sustaining treatments and who can make medical decisions for them if they are incapacitated), maintaining written policies and procedures regarding advance directives, documenting the completion of advance directives in the person’s medical chart, complying with state law regarding the implementation of advance directives, and providing staff and community education about advance directives.
The PSDA mandates work well with most people. However, assessing a person’s capacity to make medical decisions is a tremendous challenge for medical ethics (American Geriatrics Society Ethics Committee, 1996). In theory, advance directives enable people to choose the type of medical treatment they prefer in advance of a medical crisis. However, numerous studies show that the theory does not hold up well in practice: Most people, especially older adults, see such planning as a family process. They engage in informal advance care planning, preferring to allow family members to make decisions for them when the need arises and to give them leeway in interpreting advance directives even when they exist (Allen & Shuster, 2002). Thus it is unlikely that a person being admitted to a nursing home will have completed a formal advance directive. Because placement in a nursing home is already stressful and likely to occur in the context of a medical crisis, the new resident is unlikely to understand the information presented as mandated by the PSDA. To make matters worse, if new residents are cognitively impaired, they may be unable to act in their own behalf in communicating end – of-life wishes and understanding the consequences of their choices (Allen et al., 2003). Research clearly shows that even people with undocumented mild cognitive impairment do not understand the information presented to them under PSDA guidelines (Frank et al., 1999) even though over 80% of people in one study could understand simple treatment preferences (Allen et al., 2003). This raises important ethical questions concerning whether physicians can trust any advance directive signed by such individuals after they move to a nursing home (Kapp, 2008).
Assessing a nursing home resident’s ability to make medical treatment decisions can be conceptualized as a problem involving the fit between the original intent of the law and the resident’s cognitive capacity (Smyer & Allen-Burge, 1999). Several researchers have tackled the problem of how to assess decision-making capacity with varying results. Most important, a careful assessment of the resident’s capacity to understand treatment and intervention options is necessary (Kapp, 2008).
Still, many problems remain. No uniform approach to determining residents’ cognitive competence exists, although progress is being made through the establishment of guidelines (American Bar Association/American Psychological Association, 2005, 2006, 2008). One barrier to a common approach is that each state sets the criteria needed to demonstrate cognitive competence (which is usually approached from the opposite side—what it takes to establish incompetence). To complicate matters further, research also shows lack of agreement between what nursing home residents want and what their families think they would want, which also varies with ethnicity (Allen-Burge & Haley, 1997; Smyer & Allen-Burge, 1999). Resolving the problem will involve using the various approaches we have considered for determining person-environment interactions, combined with strong clinical assessment (see Chapter 10), in the context of specific treatment goals and maintaining quality of life. Clearly, creating an optimal solution takes an interdisciplinary team of professionals, residents, and family members working together.
One solution may be to assess key members of the family (who serve as proxies in completing the forms) as to their beliefs as well as careful
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observation of the resident’s capacity by the staff (Allen et al., 2003). Health care staff also need to sit down with family members and talk with them directly about treatment options.