Journal of Gerontological Nursing

Teaching Advance Directives: THE WHY, WHEN, AND HOW

Ruby K Dunlap, MSN, RN, CGNP

Abstract

In the next few years, the Joint Commission for Accreditation of Hospitals Organization (JCAHO) surveys will focus on how hospitals protect patient rights (1996 Comprehensive Accreditation Manual for Hospitals, 1995). One right of all patients is the right to be informed of and participate in their care, including end-of-life treatment planning. Details of the JCAHO standards are given in Table 1. Patients can participate in their end-of-life care plan by giving verbal or written instructions about that care some time before it is implemented. Those instructions are known as advance directives. Clinical experience supports Larson's (1994) and Silverman, Fry, and Armistead's (1994) findings that patients are receptive to nurses' teaching about advance directives and end-of-life treatment planning. The purpose of this article is to discuss the basis and method for teaching advance directives. Patient autonomy and medical futility will be integrated into the discussion as the foundation on which the advance directive is built.

TABLE 1

Joint Commission Detailed Standards for Patient Involvement in all Aspects of Their Care

TABLE 2

Summary of Advance Directive Teaching Process…

In the next few years, the Joint Commission for Accreditation of Hospitals Organization (JCAHO) surveys will focus on how hospitals protect patient rights (1996 Comprehensive Accreditation Manual for Hospitals, 1995). One right of all patients is the right to be informed of and participate in their care, including end-of-life treatment planning. Details of the JCAHO standards are given in Table 1. Patients can participate in their end-of-life care plan by giving verbal or written instructions about that care some time before it is implemented. Those instructions are known as advance directives. Clinical experience supports Larson's (1994) and Silverman, Fry, and Armistead's (1994) findings that patients are receptive to nurses' teaching about advance directives and end-of-life treatment planning. The purpose of this article is to discuss the basis and method for teaching advance directives. Patient autonomy and medical futility will be integrated into the discussion as the foundation on which the advance directive is built.

PATIENT AUTONOMY: THE "WHY" OF ADVANCE DIRECTIVE EXECUTION

Autonomy is the basis for all patient involvement in decision making and is derived from the general ethical principle of respect for people (Dubler & Nimmons, 1993; Miller, 1995). Autonomy is also called self-determination and is a tenet of the Western philosophical and legal view of people. The United States Declaration of Independence, for example, illustrates this view by the statement that individuals have the right to "life, liberty, and the pursuit of happiness" (Office of the Federal Registrar National Archives and Records Administration, 1997/1998, p. 1). This is partially reiterated in Article XIV of the Constitution. When a patient makes a decision about health care, the decision is not only an exercise of a moral right but also an exercise of a civil right. Nurses who instruct and support patients' autonomy are, therefore, supporting both their patients' civil and moral rights.

In the health care setting, patient autonomy is preserved in many ways. The need for informed consent for certain procedures is an example. The converse of informed consent is informed refusal, another exercise of patient autonomy. Sometimes patients have to choose among alternative treatment plans. The choice of one option and the refusal of the other options is an exercise of both informed consent and informed refusal. Advance directives are a way that people give prior informed consent and informed refusal in very specific situations. Advance directives include the living will and durable power of attorney for health care. The living will communicates to formal and informal care providers that the individual chooses to refuse a curative treatment plan or life support if the life threatening situation be irreversible.

The durable power of attorney allows individuals to select a surrogate to make health care decisions for them if they become decisionally incapacitated. Decisional incapacitation can occur as an acute confusion episode as the result of illness or medication or it can occur insidiously as the result of organic brain disorders. Decisional incapacity means that the individual no longer has the reasoning or judgment to receive and process the information needed to make health care decisions. Health care decisions will then have to be made for the person by surrogates whether formally designated by the individual in a durable power of attorney or informally by default. If choices regarding end-of-life treatment have not been clearly communicated by individuals to the surrogates, they are left to substitute their judgment for that of the individual. Substituted judgment can range from guessing what the individual might have wanted to making a value-based decision on the worth of a person's life (Thomasma, 1992). Libbus and Russell (1995) found a high degree of congruency between patients' and their designated surrogates' end-of-life decision making. Morris et al. (1995), on the other hand, found that health care providers were no better than chance at guessing patients' resuscitation preferences. Because of this, it is best if people execute both documents, the living will and the durable power of attorney for health care.

Although there is increasing impetus for people to execute advance directives, the literature suggests that the actual impact of formal advance directives on medical end-of-life decision making may be marginal (Hesse, 1995; Teno et al., 1994). These studies did not measure informal discussions that may or may not have occurred among clinicians, their patients, and their families. Solomon et al. (1993) found that physicians and nurses perceive that patients' and their surrogates' involvement in end-of-life decision making is inadequate. The acknowledgment that patients theoretically have the right to decide has probably not yet caught up with actual practice. Dubler's (1993) response to the Solomon study is applicable to the general state of endof-life care: "the authors' conclusion... fails to take into account the huge chasm that separates abstract principle from the messy reality of patient care" (p.23). Dresser (1994) suggests that advance directives may be increasingly implemented as people adapt to a less paternalistic model of health care delivery. Written advance directives remain the clearest expression of and best protection for patient autonomy in end-of-life decision making.

MEDICAL FUTILITY: THE "WHEN" OF ADVANCE DIRECTIVE IMPLEMENTATION

The concepts of patient autonomy and medical futility merge in the language of the advance directive which directs the clinician to withhold or withdraw life support when the patient becomes terminal. The problem for both patients and clinicians often is the definition of terminal. It requires the clinician to predict that the disease or injury state will not respond to treatment, that treatment will be futile. In fact, this kind of prognosis is not always easily made. Medical futility has been defined as the unlikelihood of surviving cardiopulmonary resuscitation (CPR) or experiencing quality of life below a minimal threshold (Curtis, Park, Krone, & Pearlman, 1995). Taylor (1995) describes futility from the disparate views of the clinician and the patient. Futility from the patient's point of view is treatment that is "medically indicated but not valued by the patient; and ...[futility from the clinician's point of view] is valued by the patient but not medically indicated" (p. 301).

Attempts to standardize and quantify medical futility have suffered from the variability of clinical situations. Patient scoring systems such as the Acute Physiology, Age, Chronic Health Evaluation (APACHE) III (Knaus, et al., 1991) and the PreArrest Morbidity (PAM) index have some potential usefulness in predicting which patients will be unlikely to respond to CPR (Ebell, 1992). The incidence of false positives with these and other scoring systems particularly in an evolving medical crisis limits their usefulness.

Table

TABLE 1Joint Commission Detailed Standards for Patient Involvement in all Aspects of Their Care

TABLE 1

Joint Commission Detailed Standards for Patient Involvement in all Aspects of Their Care

Curtis et al. (1995) in an analysis of 145 Do Not Attempt Resuscitation orders found that medical futility in conjunction with patient or surrogate preference was the rationale for 63% of the orders, and medical futility alone was the rationale for 12% of the orders. Of this 12%, all but one patient agreed with the withholding of CPR. Medical futility criteria were further divided among likelihood of CPR survival, quality of life, and a combination of the two. The authors do not state it, but one can speculate from the context that the rationale for the remaining 25% of Do Not Attempt Resuscitation orders was patient preference alone. This study illustrates the complexity of end-oflife decision making and the weight that prognostic skills of the clinician are given in that situation. It is reassuring, for most of this sample, that the Do Not Attempt Resuscitation order was likely the result of at least some consensus among the clinicians, the patients, and their surrogates. It underscores the need to teach patients and their surrogates their role in planning and executing advance directives and the circumstances under which those directives might be invoked. Patient autonomy is the "why** of advance directive execution; medical futility is the "when" of advance directive implementation. Both aspects need to be included when teaching patients and their families about advance directives.

PATIENT EDUCATION: THE "HOW" OF TEACHING ADVANCE DIRECTIVES

The teaching process mirrors the nursing process (Kozier, Erb, & Biais, 1992). One must first assess the client's learning needs and assess the learner's readiness and ability to learn. This may often depend on the timing and context of the teaching opportunity. For example, the needs and learning characteristics of a group of healthy senior adults in a casual social setting will be very different from the needs of a grieving relative at the bedside of a person who has experienced a terminal event. Assessment tools range from simple questions to observations to chart reviews.

Establishing learning objectives, selecting content, and choosing teaching strategies are part of the planning phase of teaching (Kozier, Erb & Biais, 1992). Objectives can vary depending on the individual's or group's needs. Objectives can range from increasing the execution of advance directives within a group to a single person verbalizing comfort with the end-of-life treatment decisions he or she has made. At the least, the recipients of the teaching should be able to describe what advance directives are and when they are invoked. Although the majority of states recognize some form of advance directive, not all do so. State laws differ and advance directive teaching needs to reflect this. Copies of the living will and durable power of attorney recommended by the state in which the teaching is taking place should be available at the teaching session. People can be referred to their attorneys, banks, or clergy for witnessing these documents because neither relatives nor health care providers can serve in this capacity. People should also be instructed to provide a copy of their advance directive to their primary health care provider, to keep the original copy in an easily accessible place, and to communicate their execution of an advance directive to their closest relatives. Some people also carry a wallet copy of their advance directive.

Content, like the objectives, should be based on the results of the teaching assessment and tailored to the needs of the recipients of the teaching. Selecting content for teaching about advance directives will include transmitting accurate and upto-date information and correcting misinformation. Misconceptions include concerns about abandonment or fears that "they will pull the plug too soon," as a 94 year old said when explaining why she adamantly refused to execute any kind of advance directive. There should be plenty of time for people to voice concerns such as these. Contrasting instances when forms of life support may be indicated for individuals who have advance directives with instances of medical futility in which life support would be inappropriate may clarify this issue. For example, an elderly patient may require shortterm mechanical ventilation after surgery or for respiratory failure associated with pneumonia. An advance directive should not affect this sort of treatment plan.

The discussion should include a description of some of the treatments that could be considered life support. These include CPR, dialysis, tube feedings, surgeries, intravenous fluids, chemotherapy, and antibiotics. In some instances, hospitalization may be considered a life support measure the patient or the family is not willing to take. All of these therapies have very specific indications, and a description of those indications could be included in the discussion. One should never communicate the idea that one disapproves of life-sustaining therapies as such. The execution of an advance directive does not mean that the individual will not receive interventions such as these when indicated. The age of the patient needs to be considered as one of several criteria when making decisions to implement an advance directive. For example, Longstreth, Cobb, Fahrenbruch, and Copass (1990) found that people 70 years old or older responded to out-of-hospital cardiac defibrillation as well as younger patients. However, the percentage of those 80 years old or older who were discharged from the hospital after similar resuscitation was significantly lower than that of younger patients, and no patient 90 years old or older survived to discharge. This illustrates the complexity of the decision to implement an advance directive and how the frail aged, those over 85, might be considered differently than the relatively young aged, those under 85.

Table

TABLE 2Summary of Advance Directive Teaching Process

TABLE 2

Summary of Advance Directive Teaching Process

Advance directive instruction is not complete without mentioning CPR outcomes. Frail elderly patients who have received CPR are, statistically, not likely to survive to hospital discharge. Both Schonwetter, Walker, Kramer, and Robinson (1993) and O'Brien et al. (1995) found that the desire for CPR decreased when outcome data were given to elderly subjects. Consent or refusal cannot be considered informed unless outcome data are included in the instruction. The nature and amount of outcome data shared should be based on the context and needs of the recipients of the advance directive instructions. The language used should also be tailored for the specific circumstances. The goal is to have informed and empowered health care consumers who are able to make decisions based on reality.

The suffering and indignity a proposed treatment plan will cause a patient can be weighed against the benefit the patient is likely to receive from the treatment. This is often referred to as the burdcn-to-benefit ratio. Many interventions essentially prolong dying and, thus, increase the burden-to-benefit ratio experienced by the elderly. These interventions range from tube feedings to surgeries and mechanical ventilation. The teaching process should allow the elderly the opportunity to explore what is important to them about life and how they would die if given a choice. Dubler and Nimmons (1993) and Doukas and McCullough (1988) recommend using a values history to guide the discussion. Ultimately, the advance directive is an expression of that choice and is intended to guide the clinician in treatment planning when the data suggests that the patient has entered the terminal phase of an illness.

While the language of the advance directive focuses on informed refusal of interventions in the terminal phase of an illness, it often includes words that request health care professionals to provide comfort care, such as pain control. A description of comfort measures that can be provided during the last stages of illness should lessen the sense of abandonment often expressed by elderly patients. Dying patients deserve aggressive symptom management, and many advance directives communicate a request for this.

Both the selection of teaching strategies and actual implementation of the plan will be dependent on the context. Advance directive teaching takes place in varied settings by a variety of health care professionals. Much advance directive teaching is done informally between single individuals and their care providers. Advance directive teaching can also be done more formally as part of a larger consumer education initiative, such as a senior health fair. The site, learner's needs, and situation should shape the teaching strategy and its implementation.

Finally, the teaching process needs to be evaluated and its results documented. This will vary according to site, teaching context, and recipients. The JCAHO scoring for end-of-life care will be based on interviews with hospital staff, patients and their families, and patient medicai records. Data from all these sources should be consistent and congruent with both the spirit and the letter of patients' advance directives. Table 2 summarizes the sort of questions instructors need to ask as they move through the advance directive teaching process.

CONCLUSION

End-of-Hfe decision making often involves negotiation and finding consensus among people with conflicting interests. The advance directive is one way patient autonomy can be expressed and protected. Medical futility describes the condition under which that advance directive is to be invoked. Teaching health care consumers about advance directives provides an opportunity for nurses and other health care professionals to provide their clients with the means to make informed choices in end-of-life care.

REFERENCES

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TABLE 1

Joint Commission Detailed Standards for Patient Involvement in all Aspects of Their Care

TABLE 2

Summary of Advance Directive Teaching Process

10.3928/0098-9134-19971201-06

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