Journal of Gerontological Nursing

ADVANCE DIRECTIVES AND DEMENTIA

Veronica F Rempusheski, PhD, RN, FAAN; Ann C Hurley, DNSC, RN, FAAN

Abstract

ABSTRACT

Since the 1990 Patient Self-Determination Act, increasing numbers of adults are completing advance directives (ADs), but unfortunately many adults seen in a dementia evaluation program have not completed an AD. This article discusses the issue of individuals with dementia completing ADs. Situational factors that frame this issue are the stage of dementia, degree of certainty of an individual's wishes for end-of-life care, the decision-making act required by care providers, and the degree of contentment or distress experienced by an individual with dementia. Several investigators have demonstrated successful completion of ADs by individuals with mild and moderate dementia. A nurse's knowledge about the stages of dementia is essential to helping an individual through the AD decision-making process. Nurses caring for individuals with dementia should assess decision-making context; recognize the emotions of family, friends, and staff; understand the substance and logic of AD requests; and support individuals and their decisions.

Abstract

ABSTRACT

Since the 1990 Patient Self-Determination Act, increasing numbers of adults are completing advance directives (ADs), but unfortunately many adults seen in a dementia evaluation program have not completed an AD. This article discusses the issue of individuals with dementia completing ADs. Situational factors that frame this issue are the stage of dementia, degree of certainty of an individual's wishes for end-of-life care, the decision-making act required by care providers, and the degree of contentment or distress experienced by an individual with dementia. Several investigators have demonstrated successful completion of ADs by individuals with mild and moderate dementia. A nurse's knowledge about the stages of dementia is essential to helping an individual through the AD decision-making process. Nurses caring for individuals with dementia should assess decision-making context; recognize the emotions of family, friends, and staff; understand the substance and logic of AD requests; and support individuals and their decisions.

There is a rise in the prevalence and incidence of dementia, particularly Alzheimer's disease. The dementing illnesses result in a devastating loss - that of cognitive function. Approximately 4 million Americans have Alzheimer's disease, that is 1 in 10 individuals older than age 65 and nearly 50% of those older than age 85. These individuals live with the disease an average of 8 years, although many live for as long as 20 years or longer after the onset of symptoms. The prevalence of Alzheimer's disease is estimated to rise to 14 million in the next 50 years (Alzheimer's Association, 1999). The mention of Alzheimer's disease precipitates thoughts of individuals incapable of making any decisions, including those in regard to their own health care.

The four stages of dementia suggested by Volicer and Hurley (1998) provide a framework for the progression of Alzheimer's disease. In the first stage, mild dementia, individuals will exhibit impaired memory, personality change, and spatial disorientation. Individuals in the first stage of dementia usually understand the implications of a diagnosis of Alzheimer's disease, despite disease symptoms of increasing difficulty in retaining new information, performing calculations, problem-solving, spatial orientation, word-finding, and interpreting visual and auditory stimuli (U.S. Department of Health and Human Services [USDHHS], 1996). Individuals with mild dementia in support groups are often relieved about knowing a diagnosis versus the uncertainty of not knowing. Individuals with mild dementia exhibit a fairly high degree of independence.

Beginning with Stage 2, moderate dementia, in which individuals exhibit the symptoms of aphasia, apraxia, confusion, agitation, and insomnia, the level of independence decreases. During the first and second stages of the disease, individuals with Alzheimer's disease and related dementias may have the capacity to make some simple decisions such as choosing a health care proxy (Sansone, Schmitt, Nichols, Phillips & Belisle, 1998), stating preferences about their health care, and completing advance directives (Brechling & Schneider, 1993; Burgener, 1999; Fazel, Hope, & Jacoby, 1999). In Stage 3, severe dementia, individuals exhibit symptoms of resistiveness, incontinence, eating difficulties, and motor impairment. The level of independence is severely diminished. The fourth and final stage of dementia is terminal. During this final stage the person is bedfast, mute, dysphagic, and has intercurrent infections.

An open discussion with patients and their families about advance directives and a clear articulation about the progressive and degenerative nature of the disease should follow a sensitively communicated diagnosis of Alzheimer's disease. Individuals' readiness for a discussion about advance directives includes a consideration of their values and beliefs about autonomy and moral agency. Autonomy refers to the right of an individual to selfdetermination, a right to decide what is done to one's self according to the values and beliefs that comprise the self. Autonomy assumes that individuals have decision-making capacity.

The process of deciding one's own health care is grounded in a belief in self-determination. It is the right of everyone residing in the United States to be informed of such under the Patient Self-Determination Act (PSDA) of 1990 (LaPuma, Orentlicher, & Moss, 1991). However, the concept of autonomy is culture-laden (Hallenbeck & Goldstein, 1999; Tilden, 1999) and may not fit within one's value structure. Some cultures support a person-centered decisionmaking model whereas others support a family-centered model (Tilden, 1999). In the broader American culture there has been a change from previous generations who chose not to know a diagnosis or whether they were dying compared to current American culture with a strong emphasis and value placed on disclosure and one's right to know. This is a value that may not be shared by other cultures.

One can be a moral agent for himself or for another, that is, act (or make a decision) in accordance with ethical principles, societal expectations, or a professional code to do what is "right." Individuals with mild dementia may act as their own moral agents. More likely, professional and family care providers act as moral agents for individuals at all stages of dementia. According to Hurley, MacDonald, Fry, and Rempusheski (1998), "Clinical and ethical decision making are two inseparable components of moral agency in the nursing role" (p. 155). While their reference to moral agency is geared specifically to the nurse-patient-family relationship in regard to care of individuals with severe and terminal stages of dementia, helping another decide within a moral framework is the key to assisting another in completing advance directives.

Less than 20% of the general adult population have completed advance directives (Brechling & Schneider, 1993; Hanson & Rodgman, 1996; LaPuma et al., 1991). There is evidence of an increasing trend toward documenting advance directives since the PSDA (Morrison, Olson, Mertz, & Meier, 1995; Omnibus Budget Reconciliation Act of 1990); however, it is likely that only a small percentage of individuals seen in a dementia evaluation program will have completed advance directives (Brechling & Schneider, 1993). A discussion with an individual with dementia, their health care providers, and family members about advance directives is particularly salient during the first stage of dementia when a degree of cognitive function is most likely to be present. Therefore, the purpose of this article is to discuss the issue of individuals with dementia completing advance directives.

FRAMEWORK FOR DISCUSSION

The following four situational parameters frame the discussion about advance directives and dementia and organize the literature relevant to this discussion (Newton, 1999):

* Stage of dementia.

* Degree of certainty of an individual's wishes.

* The act required of care providers.

* Degree of contentment-distress.

Stage of Dementia

A measure of cognitive function is the usual gauge by which most health care providers illustrate a stage of dementia. The Mini Mental State Exam (MMSE) (Folstein, Folstein, & McHugh, 1975) is the most commonly used measurement tool for assessing cognitive function of individuals in clinical settings. The 30-item MMSE yields a score ranging from 0 to 30. Scores below 24 indicate the existence of dementia. Scores are further differentiated as to level of dementia. Generally accepted cut-off points include scores of 0 to 14 as severe or high cognitive impairment, scores of 15 to 23 as moderate cognitive impairment, and scores of 24 to 30 as no impairment (Sansone et al., 1998). Caution should be used in interpreting the score on an MMSE because the score can be affected by English language skills, level of intelligence, and formal education level. The context of a person's daily activities, interactions with others, and background provided by friends and family rather than the score on the MMSE provides a more complete assessment of cognitive function. The MMSE score is merely one aspect of the total clinical assessment of a person with dementia.

Other scales such as the Global Deterioration Scale (GDS) (Reisberg, Ferris, DeLeon, & Crook, 1982) and the Short Portable Mental Status Questionnaire (SPMSQ) (Pfeiffer, 1975; Welch & West, 1999) also have been used to determine mental status. Similar kinds of ranges and cut-off points are used with each of these scales to denote mild, moderate, and severe cognitive impairment. Educa-tion is a variable considered in the underlying scoring mechanism of the SPMSQ, which allows for errors according to a level of education (e.g., 6 errors for individuals with less than grade-school education, 5 for grade-school level, and 4 errors for individuals with some college [Welch & West, 1999]). When using measures of cognitive function, levels of intelligence and education are often assessed and analyzed for their relationship to cognitive function. These scale scores and their correlation must be evaluated in interpreting the measures.

Often the DSM-IV criteria for Alzheimer's disease, and related dementias are used to establish a diagnosis of dementia and after it is established it may be assumed that an accurate and thorough cognitive assessment was conducted. Some researchers use the diagnosis of dementia as a measure of cognitive capacity; however, it does not determine capacity. Rather, the diagnosis of dementia sets up a potential barrier for communication with individuals with Alzheimer's disease.

Several researchers (Brechling & Schneider, 1993; Fazel et al., 1999; Sansone et al., 1998) have illustrated demented individuals' capacity to complete advance directives using the aforementioned measures to stage dementia. Brechling and Schneider (1993) described the legal arrangements made by a sample of 115 individuals with early stage dementia (MMSE score range = 17 to 26). They reported that 13% had completed a durable power of attorney (DPOA) for health care at their initial visit to a dementia evaluation program and 32% completed a DPOA by the second visit. They did not address the existence of a health care proxy. Fazel et al. (1999) studied 100 older adults, older than age 65, and compared healthy volunteers (MMSE score, mean = 27.4) with first referrals for dementia (MMSE score, mean = 15.5) to a community mental health team.

Using clinical vignettes of possible treatment situations and a semistructured interview format to determine competence of the participants, investigators found that 20% of individuals with dementia were competent to complete advance directives. Also, the researchers found that the higher the level of premorbid intelligence of the individual with dementia the greater was the likelihood of their having the capacity to complete advance directives. Sansone et al. (1998) hypothesized that cognitively impaired residents in a nursing home could choose consistent and appropriate health care proxies. Fifty-five percent of the 185 residents who consented to be in the study were consistent in their choices at all three interviews. They found that 36% of the high impairment group (MMSE = 0 to 14), 54% of the moderate impairment group (MMSE = 15 to 23), and 87% of the no impairment group (MMSE = 24 to 30) made consistent choices about health care proxies. When they compared individuals with a diagnosis of dementia, 39% made a consistent choice of a health care proxy. Scores on a proxy scale, determining residents' understanding of the role of a health care proxy, had no significant relationship with the consistency of choices about proxies.

The authors concluded that perhaps individuals with dementia selected their health care proxies based on a sense of trust rather than using complex decision-making capability. Not considered by these researchers is that there may be other reasons for a consistency of choice of health proxy named by individuals with dementia. Perhaps the repertoire of names remembered by the individual with dementia was diminished. Their conclusion suggests the need to explore other potential ways to assess an individual's capacity to select health care proxies or make health care decisions, rather than the stage of dementia as measured by the MMSE, GDS, and the SPMSQ.

Degree of Certainty of Individual's Wishes

Individuals with unwavering convictions about their health care have a fairly stable context within which to make decisions. However, the ambiguity of interpretation of clinical situations often clouds even those who appear certain. Cameron (1998) described a situation in which comfort was the choice of an older adult with dementia for whom she was a moral agent. Surgery appeared to be the only mechanism to completely remove the precipitating factor (i.e., an inflamed appendix) and alleviate the pain. The alternative of no surgery would have resulted in increasing the pain that would last until death. The affirmative decision to have surgery performed on the elderly individual with dementia revealed other complex, potential decisions simply in an attempt to provide comfort. Cameron suggested guidelines for making choices because even when one is "certain" about another's wishes, the scenarios that a moral agent might encounter are time consuming, exhausting, ambiguous, and confusing regarding what is truly the best decision.

Accomplishing one's wishes is particularly complex when placed within the real world of possible complications and suffering associated with the symptoms of progressive dementia. One of the authors (VFR) observed Mrs. R., a 73-year-old widow with mild dementia, who was admitted to an acute care facility from home for treatment of a severe leg ulcer. Her daughter, designated health care proxy and durable power of attorney for Mrs. R, was given the state and institution-approved advance directive form to review with Mrs. R. When asked what "terminal" meant, Mrs. R. said, "I am going to die soon. If it is God's will, I am ready." To subsequent questions about treatment at the end of her life, Mrs. R was clear that she did not want machines to breathe for her. She again emphasized she was ready when it was her time to die. Mrs. R.'s wishes were clear. However, in the daily context of Mrs. R's progressive dementia, her daughter, knowing the certainty of her mother's wishes, had to interpret every health care event during the next several years, including a stroke, deep vein thrombus, and episodes of congestive heart failure, considering all the possibilities before making a treatment decision as a moral agent.

Decision-Making Act Required of Care Providers

Previous examples describe the decision-making action required of family care providers, an act that on the surface appears to be a simple health care decision. However, family and professional care providers must consider many factors before a decision is made. Timing of each decision or the "correct psychological moment for achieving the most desirable effects" (Hurley, Volicer, Rempusheski, & Fry, 1995, p. 39), and trust were the catalysts that emerged in a process model of treatment decisions for patients with Alzheimer's disease.

According to Hurley et al. (1995), timing and trust are essential to moving family and health care providers forward toward a state of mutual readiness to make advance treatment decisions for individuals with dementia. For the family decision-maker the state of being ready to make a decision involves more than the receipt of information. Readiness involves a synthesis of information received, perhaps from multiple sources and with varying degrees of credibility that complicate the evaluation of usable information. Readiness involves an acceptance of the decision-driven outcome or goal and it involves a reconciling of one's beliefs and values and reevaluation of one's beliefs and values with the synthesis of information. Readiness involves an emotional acceptance and commitment to embrace the synthesized information and to move toward a goal, either in a single decision or in a series of stepwise decisions until the desired goal is achieved. Hurley et al. (1995) characterized readiness for family care providers as "emotionally and intellectually prepared" and for professional health care providers as "a sense of completeness" (p. 40).

The study of surrogate or proxy decision-making (Mezey, Kluger, Maislin, & Mittelman, 1996) and its relationship to the decisions of the individual for whom a health care decision is made (Ouslander, Tymchuk, & Rahbar, 1989; Terry et al., 1999) illustrate the importance of communication between individuals with dementia and their health care proxy. Individuals' preferences that their own directives be followed was more likely if the health care proxy was chosen versus assigned by default, and received direct communication about end-of-life preferences (Emanuel & Emanuel, 1992; Terry et al., 1999).

Biomedical breakthroughs and new experiences by individuals with dementia may influence a "change of heart" with regard to some treatment or care decisions (Dresser, 1995). What are individuals with dementia requesting at any given point in time compared to what they declared in previously prepared advance directives? Is one statement more valid than another? In examining various scenarios for the impact on an individual with dementia, it is important to consider not only the autonomy of the individual of the past (i.e., precedent autonomy) and wishes made before the onset of dementia, but also their present autonomy, even if current wishes contradict prior choices (Newton, 1999).

Other acts care providers may need to address within their role as moral agent include assisted suicide, active euthanasia, or leaving lifethreatening problems untreated (Newton, 1999). While addressing these acts is beyond the scope of this article, the acts are presented as examples of the complex decisions faced by care providers in making decisions about the care of individuals with dementia. Nurses and other health care providers can help family members with decisions by not only providing relevant data about the individual with dementia so they could make the best possible informed decision, but also by supporting whatever decision is made in the time that follows (Hurley et al, 1998).

Degree of Contentment and Distress

Contentment and distress are adjective pairs that exist on a single continuum in an ethical framework of benefit and burden (Newton, 1999). The quality of one's life might be based on observed contentment or distress and on an assessment of underlying factors leading to or related to observed contentment or distress in the person with dementia. The contentment of eating one's favorite foods or forbidden foods (e.g., those not allowed on therapeutic diets) might be seen in a smile or look of pleasure. The distress of being given one's least liked foods might be observed in behaviors including facial expressions such as wrinkling a nose or sticking a tongue out, or behaviors showing displeasure such as spitting out food.

Contentment might be exhibited as the excitement of receiving flowers, high energy exhibited when interacting with grandchildren, wearing a new shirt or a new dress, and getting one's hair cut or styled. Dresser (1995) noted these observations are a glimpse into the world known only to those experiencing dementia. The view of the outsider assumes or presumes contentment or distress and concludes a state of life that may or may not be the true experience of the individual with dementia. The distress end of the continuum is witnessed in greater frequency and complexity as dementia advances to the final stages (Cameron, 1998).

CLINICAL IMPLICATIONS

Clinically, the nurse is in an excellent position to help individuals with mild dementia be aware of and complete advance directives during the first stage of the disease and then bring in the family or surrogate role in care as the disease progresses. The primary clinical task is to view every person as unique despite the common diagnosis and trajectory shared with others along a progressive, degenerative course of Alzheimer's disease or related dementia.

Knowing the stages of progressive dementia is crucial to helping a person with mild dementia navigate the advance directive decision-making process. Assessing cognitive status involves more than using a standard measurement tool, such as the MMSE, GDS, or the SPMSQ. It must include:

* An assessment of the context in which a person makes choices. For example, one item on the MMSE asks an individual to write the sentence stated by the examiner. If an individual being assessed inquires about the statement and alters it to read in a way that is more in line with his or her way of thinking, this illustrates more than an ability to recall and write what the examiner asked. The context of the interaction provides greater depth to the assessment of cognitive function than a score for following the direction given by the examiner. The context and details of interactions with an individual with dementia are the salient determinants for nursing action. Measurement tools may help determine the level of cognitive ability at any one point in time, but may not be sensitive enough to grasp the nature of the decision-making capacity of every individual with dementia.

* An assessment of recognition of family members and staff - those with whom an individual with dementia has frequent contact versus those with whom there is little or infrequent contact. Differences in reactions, level of comfort, and level of recognition should be noted. While a "name" may not be used, language of association will cue the observer to the degree of recognition perceived by an individual with dementia. Measurement tools may help determine the quality of life for a person with dementia using a set of societal-determined parameters. These parameters may be outside the realm of meaning for individuals with dementia and completely irrelevant to their current experiential interests of seeing their grandchildren, socializing with others, or planting flowers. The critical interests, those which lead to life goals, are simply not important anymore (Dresser, 1995).

* An assessment and documentation of observed anxiety, fear, agitation, and other seemingly unexplainable emotions and behaviors and the potential antecedent or related factors. These factors include responses to light, dark, time of day, unknown individuals, new situations, changes in internal and external environment (e.g., changes of season as depicted by snow, birds, flowers in bloom, fullness of trees). For example, when asked what was wrong when she was yelling, Mrs. R. said, "I don't know," but she quietly went to sleep with the consistent, gentle touch of her care provider (Rempusheski, 1999, p. S46).

* Listening to requests, not only for the substantive nature of the request, but also to the logic, consistency, and interpretation of the request relative to the context of the situation and time.

Nurturing trust among health care providers, individuals with dementia, and their families is achieved through truth telling and fidelity (Hurley et al., 1998). Telling the full story of an individual's day versus a superficial comment such as, "He's okay," informs family members that a health care provider cares. Trust allows for increased quality of communication about advance directives. Nurturing trust is revealed in mutuality of goals set by professional and family care providers for the safety, comfort, quality of life, and dignity of individuals with dementia (Hurley et al, 1998). This mutuality includes:

* Teaching/learning between and among family and health care providers.

* Decision-making.

* Respect for the roles each play in the care of individuals with dementia.

Consultation and collaboration among multiple disciplines on a health care team is essential to the most complete and moral care of individuals with dementia. Involving community-based and setting-specific professionals from assessment clinics, adult day care centers, acute care, and nursing homes; family caregivers of individuals with dementia; and individuals in the first stage of dementia provides an opportunity to set standards and guidelines for care. Mutually derived care guidelines may serve as a basis for advance directive decisions. For example, Post and Whitehouse (1995) described the development of the Fairhill guidelines on ethics of the care of individuals with Alzheimer's disease using a framework of community dialogue and discourse ethics.

A volunteer group of family caregivers and individuals with mild dementia met monthly for 9 months for the purpose of identifying and addressing ethical aspects of dementia care. Interdisciplinary, interprofessional individuals interested in dementia care formed a focus group to listen to the concerns and issues of the volunteers. Together, the professionals, family caregivers, and individuals with early stage dementia developed guidelines addressing the following six topics that emerged from the dialogue:

* Truthtelling and diagnosis (communicating the diagnosis).

* Driving privileges.

* Respecting choice: autonomy, capacity, and competence.

* Dilemmas of behavior control.

* Issues in death and dying.

* Quality of life and treatment decisions.

Several of the strategies suggested could serve to facilitate assessment and decision-making by family/surrogate and professional care providers. Others (Fitten, Lusky & Hamann, 1990; Mezey, Teresi, Ramsey, Mitty, & Bobrowitz, 2000; Schmand, Gouwenberg, Smit, & Jonker, 1999; Steinberg, Fitten, & Kachuck, 1986) have developed guidelines/protocols, measures, and other methods to determine the capacity of an individual with dementia to make a specific health care decision or select a health care proxy.

Whatever the setting (e.g., acute care, home, ambulatory, long-term care), continuing education for all staff regarding the stages of dementia (including assessment, related information, treatment, and care) and advance directives is paramount to providing quality care to individuals with dementia and their families. Secondarily, establishing mechanisms for high quality communication (e.g., among individuals with dementia, their family or surrogate members, and professional care providers), advance care planning (e.g., standards or guidelines for care), the execution of advance directives, and conflict resolution will help actualize an ethical and pragmatic philosophy of care. (Molloy et al., 2000; Solomon & Jennings, 1998).

CONCLUSION

Advance directives guide treatment decisions. Individuals with dementia are entitled to provide input, as their capacity allows, into the daily decisions encompassing their care. An important nursing role involves knowing the individual with dementia, so that when the individual becomes incapable of providing input, the nurse may implement previous requests as part of the treatment plan.

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