Health Care Decision Making   4  

Linda Farber Post and Marie Boltz

OVERVIEW

Health care is about decisions—how they are made, who makes them, and according to what standards. Until the latter half of the 20th century, patients were told what health care interventions would benefit them and they rarely questioned the doctor’s instructions. The rise of the rights movement in most areas of society promoted the idea that patients would benefit from robust participation in decision making affecting their health outcomes. Building on the well-established doctrine of informed consent, as well as statutory and case law, all states came to require that patient goals, values, and preferences be central to health care decision making. The result was a greater degree of clinician–patient collaboration in planning and implementing care decisions.

Although all health care activities deserve principled and thoughtful decision making, the benefit–burden–risk calculus associated with treatment and diagnostic interventions typically requires specific informed consent by or on behalf of the patient. For this reason, the determination of patients’ decision-making capacity, authority, and standards becomes a most pressing issue that arises daily in the clinical setting.

BACKGROUND AND STATEMENT OF PROBLEM

Ethical Principles and Professional Obligations

Core ethical principles that underlie the health care decision process and give rise to clinician obligations include:

The tension between and among these ethical principles can create dilemmas for clinicians when their obligations conflict. For example, care providers have a duty to respect patients’ autonomy by honoring their decisions and a duty to protect them from the harm of risky choices. Care providers are also expected to provide care to patients who need it and be responsible stewards of limited resources. Clinical, legal, and ethically valid decisions by or for patients invoke a careful balancing of information, principles, rights, and responsibilities in light of medical realities, cultural factors, and, increasingly, concerns about resource allocation and access to care.

Autonomy and Capacity

The well-settled right to determine what happens to one’s own body has two equally important components: the right to consent to treatment and the right to refuse treatment. Grounded in the ethical principle of respect for persons, this right to bodily integrity is considered so fundamental that it is protected by the U.S. Constitution, state constitutions, and decisions of the U.S. Supreme Court (Cruzan v. Director, 1990). All persons are considered to have the potential for autonomy, expressed in the clinical setting through informed decision making. The threshold question is whether they have the capacity to exercise autonomy.

Respect for autonomy is widely considered to be the ethical principle most central to health care decision making because of its emphasis on self-governance and choices that reflect personal values. This heightened emphasis on self-determination is largely a Western phenomenon, however, and is not universally shared. Even capable patients, who are easily confused, exhibit diminished or fluctuating capacity or from cultures that value collective rather than individual decision making come and may not be comfortable with pure autonomous decision making. Instead, they may involve trusted others in planning their care, thus demonstrating assisted, supported, or delegated autonomy as their preferred method of decision making. If this is their customary dynamic and if it appears to be effective for them, there is no reason to encourage them to adopt an unfamiliar decision-making style in the mistaken belief that only self-governance is authentic. For these patients, autonomy may not be reflected in self-determined decision making about treatment, but in expressions of values and goals of care. Drawing on the assistance or support of trusted others does not diminish the integrity of the process. Voluntarily delegating decision-making authority to others is also an autonomous choice but it is one that must be explicitly confirmed, not inferred.

Diminished or fluctuating capacity is not a reason to ignore the patient’s voice but is a signal to attend more carefully to what is being communicated. The “what” and “how” of the treatment may be a decision for others to make; the “why” or the rationale in the patient’s voice must be heard.

Capacity and Competence

Decisional capacity refers to a set of skills related to health care decision making, including the ability to:

Capacity runs along a continuum rather than being all on or all off. Some patients are able to make all their own decisions—personal, legal, financial, health care—and some, like infants and adults with profound cognitive impairment, are unable to make any decisions. Because capacity is decision specific rather than global, most people are able to make some decisions and not others.

Although the terms capacity and competence are often used interchangeably, in the health care setting their distinctions go beyond semantics. Competence is a legal presumption that an adult has the mental ability to negotiate various legal tasks, such as entering into a contract, making a will, and standing for trial. Incompetence is a judicial determination that because a person lacks this ability, she or he should be prevented from doing certain things. In contrast, capacity is a clinical determination that a person has the ability to understand, make, and take responsibility for the consequences of health care decisions. Because the legal system should rarely be involved in medical decisions, the patient’s capacity for decision making is an assessment made by clinicians.

Consent and Refusal

In the clinical setting, the principle of respect for autonomy is most clearly expressed in the doctrine of informed consent and refusal. Because therapeutic and diagnostic interventions typically involve a range of benefits, burdens, and risks, express consent is almost always required before interventions are implemented. Informed consent is a process over time rather than a single event or a signed document. Among adults with a language barrier associated with education and/or ethnicity, comprehension might be limited (Fink et al., 2010). Providing adequate time for the informed consent discussion(s) and the opportunity to ensure understanding and voluntariness are essential to a valid decision about whether to authorize a proposed intervention. As an expression of autonomy, the most effective consent process is a collaborative interaction that includes consultation with clinicians and, possibly, family and trusted others.

Informed consent and refusal engage capable patients or surrogates acting on behalf of patients without capacity in a process that requires:

Education can improve decisional capacity to give safe, informed consent even for clinically depressed older adults (Lapid, Rummans, Pankratz, & Appelbaum, 2004). In one study, depressed patients’ involvement in health care decision making not only increased the likelihood of their receiving treatment congruent with depression treatment guidelines, but also showed reduced symptoms of depression over an 18-month period (Clever et al., 2006). “Framing” can be persuasive; a clinician’s emphasis on the distinctions about the efficacy of a treatment and whether it would be curative or palliative can influence a patient’s decision even more than information given about the disease or treatment options (Van Kleffens, van Baarsen, & van Leeuwen, 2004).

Decision-Making Authority

Treatment decisions are typically made by capable patients based on their health goals, values, and preferences in response to information they receive about their diagnosis, prognosis, and therapeutic options. These decisions are, thus, an expression of autonomy, reflecting the view that health care is not something that is done to patients; rather, it is a collaborative endeavor in which patients and clinicians contribute to the shared goal of recovery, rehabilitation, or palliation.

Readiness for decision making has a temporal, as well as a contextual, component. Asked in focus groups why they had or had not been involved in any advance care planning (ACP), older adults and their caregivers revealed considerable variability in their readiness for discussion of different components of the ACP process such as advance directive creation, communication with family and physicians, and consideration of their treatment goals (Fried, Bullock, Iannone, & O’Leary, 2009). Participants identified barriers and benefits to ACP and said that it was not the only way to prepare for decline in health or death. Prior experience with health care decision making for others influenced older adults’ propensity to engage in ACP. Having an active role in shared decision making is associated with enhanced cancer-specific quality of life, satisfaction, and more likely use of adjuvant therapy for women with breast cancer but not for men with prostate cancer (Hack et al., 2010; Mandelblatt, Kreling, Figeuriedo, & Feng, 2006).

Perceptions of ACP are crucial in determining readiness to engage in the process of proactive consideration of health care options. If “ACP” is perceived as synonymous with “end of life,” it is not surprising that individuals, families, and care professionals are reluctant to initiate or participate in “the discussion.” The common response is, “No one is dying here, so we don’t have to deal with these matters now.”

When patients are not capable of making decisions about their treatment, others are asked to choose for them, basing their decisions as much as possible on what is known of the patients’ preferences or what is considered to be in their best interest. The determination of decision-making authority is among the most critical tasks in the clinical setting. When patients lack the ability to make treatment decisions, authority to act on their behalf must be vested in others—appointed agents, family, or other surrogates. The threshold determination, then, is of the patient’s decisional capacity: an assessment of an individual’s ability to make decisions about health care and treatment.

DECISION AIDS

Especially because the elder population is expected to double during the next 20 years, capacity assessments in the geriatric setting are likely to be requested and relied on with increasing frequency. Because decisional capacity is an important marker of an individual’s ability to complete specific tasks or make specific decisions, the reliability of capacity assessments is crucial in evaluating what individuals are able to do for themselves. Nevertheless, although decisional capacity is an index of patient ability to make decisions and, therefore, involves cognitive processes, its assessment requires more than a test of mental acuity or a psychiatric examination (Post & Blustein, 2015).

Given the importance of assessing decision-making capacity, the desire for a precise method of measurement is understandable, especially in the geriatric setting. “Decisional capacity assessments are important tools in optimizing safety and autonomy when there are questions about an older adult’s ability to make decisions related to healthcare, independent living, financial management, and other areas that are essential to daily functioning” (Braun & Moye, 2010, p. 204).

Decision aids assist, guide, and support a decision-making process that requires consideration of benefits, burdens, risks, and options. Studies indicate that decision aids lead to decisions that are value based, more informed, less conflicted, and characterized by a process that is more participatory than passive compared to standard decision-making approaches (O’Connor et al., 2004). Decision aids made a difference in physician–patient discussion about the use of adjuvant therapy for women with breast cancer (Siminoff, Gordon, Silverman, Budd, & Ravdin, 2006); clarified values and options, and increased knowledge regarding breast and ovarian genetic testing counseling (Wakefield et al., 2008); and improved men’s knowledge on the risks and benefits of prostate-specific antigen (PSA) testing (Watson et al., 2006). An “order effect” was discerned regarding the sequence in which information was presented in a decision aid to women with breast cancer (Ubel et al., 2010). The order of presentation of information about the risks and benefits of tamoxifen influenced their perceptions. Bias was eliminated by the simultaneous presentation of information of competing options and risks.

A comprehensive review of several additional capacity assessment instruments (Racine & Billick, 2012) concluded that sensitivity and specificity tend to be in tension with efficiency and ease of use. Some can be administered in less than 10 minutes but may be more general, whereas others, which are more specific and in depth, require considerably more time and complicated scoring systems. Although none of the instruments is considered to be the gold standard, the literature indicates that their use in clinical practice could improve accuracy in capacity determination. Especially in the elder population, where capacity issues may be complex and multifactorial, these tools may be useful adjuncts to clinical interviews, medical record reviews, interviews, neuropsychological testing, and functional assessment.

ASSESSMENT OF THE PROBLEM

Determination of Decision-Making Capacity

The importance of capacity determination resides in the presumption that adults have decisional capacity and, absent contrary evidence, treatment decisions typically defer to patient goals, values, and preferences. This deference usually extends to all decisions made by capable individuals, including those decisions that appear risky or ill advised. Capacity assessment is important because patients who lack the ability to appreciate the implications of, and accept responsibility for, their choices are vulnerable to the risks of deficient decision making. Indeed, the reason capacity determination is considered so important and receives so much attention is that honoring the decisions of a capable patient demonstrates respect for the person, whereas honoring the decisions of a patient without capacity can be seen as an act of abandonment. Thus, clinicians have an obligation to ensure that capable patients have the opportunity to make treatment decisions that will be implemented and that incapacitated patients will be protected by having decisions made for them by others who act in their best interest.

Fulfilling this obligation requires that clinicians appreciate the characteristics of decision-making capacity, the elements of which include the ability to:

Capacity assessment depends on interaction with the patient over time rather than on specific tests. There is no gold standard instrument or “capacimeter” that assesses decisional capacity (Kapp & Mossman, 1996). The Mini-Mental State Examination (MMSE) estimates orientation, long- and short-term memory, and mathematical and language dexterity. It is not a test of executive function (an assessment more likely to capture reasoning and recall) and is, therefore, less helpful in gauging the patient’s ability to understand the implications of a decision (Allen et al., 2003). It has been suggested, however, that an MMSE score less than 19 or more than 23 might be able to distinguish those with and without capacity for decision making (Karlawish, Casarett, James, Xie, & Kim, 2005). The Assessment of Capacity for Everyday Decision-Making (ACED) is a reportedly valid and reliable instrument to assess everyday decisional capacity in those with mild to moderate cognitive impairment (Lai et al., 2008). Its use in facilitating assessment of health care decision-making capacity has not been reported but could be explored in future studies.

Although there is no consistent standardized definition of decisional capacity, there is evidence that safe and sufficient decision making is retained in early-stage dementia (Kim, Karlawish, & Caine, 2002). Persons with mild to moderate dementia can make or at least participate in making treatment decisions, but impaired memory recall might be a barrier to their demonstrating understanding of treatment options (Moye, Karel, Azar, & Gurrera, 2004). Standard assessment of appreciation of diagnostic and treatment information should focus on the patient’s ability to state the importance or implications of the choice on his or her future health. Specific neuropsychological tests (e.g., MacArthur Competence Assessment Tool and Hopemont Capacity Assessment Interview) can predict decisional capacity for those with mild to moderate dementia, although reasoning and appreciation might differ among those with mental illness (Gurrera, Moye, Karel, Azar, & Armesto, 2006).

In one study, the standard of decision making most highly valued by a group of geriatricians, psychologists, and ethics committee members was the ability to appreciate the consequences of a decision, followed by the ability to respond “yes” or “no” to a question; the standard least supported was that the decision had to seem reasonable (Volicer & Ganzini, 2003).

Clinical Importance of Decisional Capacity

Accurate and useful capacity assessment depends on the recognition that capacity is decision-specific rather than global and works on a sliding scale based on the notion of risk. The greater the risk attached to a decision, the higher the level of capacity required to make a decision that will be honored. For example, a person with diminished capacity may be able to decide what to have for lunch or when to shower without undue risk of harm. A patient who asks to be removed from life support, however, is someone whose level of capacity would need to be considerably higher, demonstrating comprehension of the risk–benefit ratio and appreciation of the consequences.

Evidence also suggests that adults with mild to moderate mental retardation are able to make and provide a rationale for their treatment decisions and evaluate the risks and benefits of treatment options (Cea & Fisher, 2003). Because most people have the ability to make some decisions and not others, respect for autonomy requires clinicians to identify the widest range of decisions each patient is capable of making. A note in the chart saying, “Patient lacks decision-making capacity” is extremely unhelpful because it implies that the individual is unable to make any decisions about anything. This inhibits the exercise of autonomy by arbitrarily precluding decision making when, in fact, the patient may only lack the ability to make complex treatment decisions. Far more helpful would be an entry that says, “Patient lacks the capacity to make decisions about participation in a drug study” or “Patient lacks the capacity to make decisions about dialysis.”

Likewise, decisional capacity may not be constant but may fluctuate, depending on the patient’s clinical condition, medication, and/or time of day. Among gerontological nurses, protecting the right of older adults with diminished capacity or physical function to make those health care decisions that they can appropriately make is among their top practice concerns (Alford, 2006). Precisely because decisional capacity is not static, it is imperative for the protection of those with mild to moderate dementia that their understanding and reasoning about treatments and interventions are periodically assessed (Moye et al., 2006). Approaching patients for discussions and decisions when they are at their most capable (e.g., during the patient’s “window of lucidity”), enhances their opportunities to participate in planning their health care.

Although disagreement with a proposed care plan or refusal of recommended treatment does not by itself demonstrate incapacity, risky or potentially harmful decisions should be carefully scrutinized to protect vulnerable patients from the consequences of deficient decision making. Because appointing a health care agent requires a lower level of capacity than that needed to make the often complex decisions the agent will make, even patients with diminished capacity may be able to select the persons they want to speak for them (Mezey, Teresi, Ramsey, Mitty, & Bobrowitz, 2002).

Decision Making in the Absence of Capacity

The more difficult clinical scenario is decision making on behalf of patients who have lost or never had the capacity to make decisions for themselves. Two approaches have been developed in response to the needs of incapacitated patients: advance directives and surrogate decision making. Advance directives (see Chapter 39, “Advance Care Planning”) include the instruction directive, also known as a living will, which is a list of interventions the patient does or does not want in specified circumstances, and the appointment directive, also known as a health care proxy or durable power of attorney for health care (DPOAHC), which is the legal designation of a health care agent with the same decision-making authority as the patient. A related type of prospective care planning is the Practitioner/Physician Orders for Life-Sustaining Treatment (POLST) or Medical Orders for Life-Sustaining Treatment (MOLST), which are consolidated sets of medical orders specifically for patients with life-limiting illnesses (Bomba, 2011; Fromme, Zive, Schmidt, Olszewski, & Toll, 2012).

Despite the advantages of ACP, it is estimated that only one third of the adult population in the United States has an advance directive (American Bar Association Commission on Law and Aging, 2014). For that reason, the majority of health care decisions for incapacitated patients are made by surrogates, usually family or others close to the patient, who are asked by the care team to participate in making treatment decisions. Absent explicit instructions from the patient (verbally or in an advance directive), decisions by others are based on either substituted judgment (when the patient’s wishes are known or can be inferred) or the best interest standard (when the patient did not have or articulate treatment preferences). Substituted judgment determines what the patient would choose based on prior statements and patterns of decision making. In contrast, the best interest standard invokes the surrogate’s evaluation of the proposed intervention’s benefits and burdens to the patient.

A health care surrogate may be any capable person 18 years of age or older who, although not specifically chosen or legally appointed, assumes the responsibility for making health care decisions on behalf of a person who lacks the capacity to make those decisions. Informal surrogates are individuals, typically family members, who are presumed to know the patient best and to act in his or her best interest. Formal surrogates may be specified by state law in a hierarchy, typically in descending order of relation to the patient. Family consent laws are state-specific statutes that set out the state-approved decision-making hierarchy—the order in which persons are authorized to make decisions on behalf of a patient who lacks decisional capacity and has not appointed a health care agent by means of an advance directive or DPOAHC. To gain as much insight as possible into the patient’s goals, values, and preferences, and approximate as closely as possible the decisions he or she would make if capable, the ethical imperative is to engage the decision-making efforts of individuals who know the patient best before moving to those with a less vested relationship to him or her. For that reason, a good-faith effort is typically required to contact members in each level of the hierarchy in turn, moving to a lower level only when it has been determined that no one at a higher level is able or willing to assume decision-making responsibilities. Most states accord considerable latitude to surrogates, especially next of kin, in consenting to treatment. Decisions about limiting treatment are more problematic and may be significantly restricted, depending on the state in which the patient is receiving care (see the Resources section, American Bar Association Commission on Law & Aging, for state guidelines).

Context of Health Care Decision Making

Health care goals and the treatment preferences for achieving them typically change as an individual’s health and functional status change (Fried et al., 2006). Previously unacceptable conditions may become more or less acceptable as they are experienced. For example, patients already in pain may be less likely to refuse a treatment outcome that includes being in pain than patients who are not currently suffering moderate to severe pain (Fried et al., 2006). Likewise, patients’ treatment and comfort goals may differ from those of their family caregivers and professional providers (Steinhauser et al., 2000).

Just as there is the right to learn one’s medical information, there is also a right not to be burdened with unwanted information. Older adults or those from cultures that traditionally shield patients from knowledge of their illness may prefer to have information disclosed to a particular family member, the family as a group, or trusted others, who will use it to make decisions on the patient’s behalf. With the implementation of the Health Insurance Portability and Accountability Act of 1996 (HIPAA), most hospitals have a form for patients to sign, designating their preferred decision maker(s). Another approach is to ask, “You’re here because you’re not feeling well. We’re going to do some tests and examinations, and then decisions about treatment will need to be made. Some patients like to have all the information; others don’t. What would make you comfortable? Who would you like us to talk to? Would you like to be part of those discussions and decisions?”

It is not uncommon for even capable patients to say, “Talk to my daughter. She makes all my decisions about important things. Just do whatever she thinks is right.” This is an autonomous decision, delegating a trusted person to be the decision maker and, if this is the dynamic the patient prefers, it would be inappropriate to try to change it. Although it is important to respect patient preferences and cultural traditions, however, a patient’s waiver of the right to have information must be explicitly confirmed, not presumed.

Trust is a critical element in the patient–provider relationship, especially in decision-making situations in which information is disclosed and questions are answered. Various factors influence information exchange and shared decision making (Edwards, Davies, & Edwards, 2009). Providers may be influenced by their perceptions of informed patients and their interest in participatory decision making, their limited knowledge of patients’ cultures, or a tendency to stereotype patients rather than view them as individuals. Patients may be influenced by their personal motivations to obtain and use information, cultural identity and expression, health literacy, and ability to cope with the possibility of receiving distressing information. Of note, a shared influence reported by providers and patients is the sick-role expectation (Edwards et al., 2009). African American patients have been shown to be significantly more likely than Caucasian patients to report low trust of the U.S. health care system, unrelated to age or socioeconomic status (Halbert, Armstrong, Gandy, & Shaker, 2006), as well as little interest in ACP and advance directives (Cox et al., 2006). This is not, however, an indication that patients of color and minority ethnic populations do not want to participate in health care decision making, including decisions at the end of life.

Quality-of-Life Considerations in Decision Making

Although there is almost universal acknowledgement of the patient’s desire to be comfortable (i.e., relieved of pain and suffering) and to achieve a sense of completion, other quality-of-life considerations elicit more varied responses. Attitudes about the importance of clergy, being physically touched, and using all available technology may differ among patients, families, and caregivers. Older adults with varying degrees of functional impairment and past experiences with treatment decision making were found to be more interested in the outcome of a serious medical event than with the curative interventions and whether the intervention could restore or maintain their ability to participate in activities they valued (Rosenfeld, Wenger, & Kagawa-Singer, 2000). Among older adults with end-stage renal disease, the decision to begin dialysis was found to be influenced by their family caregiving responsibilities, feeling that they had no other options, and their current enjoyment of life that inhibited contemplation of their death (Visser et al., 2009). Those who rejected dialysis were more often older, male, widowers compared to those who accepted dialysis. The former group imagined that they would experience a loss of autonomy and a continuing trajectory of functional loss, have difficulty getting to the dialysis center, and have to start thinking about the future—a prospect that was unappealing to them at the time. These findings speak to the contextual and temporal nature of health care decision making that has been explored by others (Fried et al., 2009).

INTERVENTIONS AND CARE STRATEGIES

Assessing the patient’s orientation and understanding can provide critical information about decision-making behavior in different circumstances, as well as the ability to articulate care wishes. Reporting that a patient is “disoriented to time and place” is helpful only in establishing the context in which more focused and useful decisional capacity assessment should take place.

Documentation needs to be specific and descriptive. The entry should describe the circumstances or interaction(s) that led to the conclusion about the patient’s ability to make decisions. Because capacity is decision specific, accurate and useful statements are “Patient appears to lack the capacity to make decisions about discharge; she is unable to describe how she will cook or get to the bathroom at home” or “Patient lacks the capacity to make decisions about surgery; he was unable to name the type of surgery, what the surgery is supposed to correct, or what is involved or to be expected during recovery.”

Communicating information includes determining what the patient and/or surrogate(s) understand, what they need or want to know, and how involved they want to be in decision making. Providing the relevant medical facts in lay language and avoiding medical jargon that creates distance are essential. It is also important to consider the participants in the decision making. Who should be present? What is their relationship to the patient? What is their decisional authority? What information is necessary, at what level of detail, and how will it be used? When is the information to be provided and over what period of time (Popejoy, 2005)?

Whenever language barriers or preferences are identified, certified interpreters are essential. Trained interpreters might be the only health care staff who recognize that patients, families or other surrogates, and the physician or health care professionals have differing interpretations of illness, treatment, and health; inconsistent understandings of the goals and plan of care, and disparate views about death and dying. Moreover, these varied parties may use language and decision-making frameworks differently. An interpreter may realize that truth telling might not only be perceived as disrespectful and dangerous but may potentially shorten the patient’s life span, as believed in certain cultures. A trained interpreter is more than a word-forword translator but, rather, can serve as a mediator, culture broker, patient advocate, witness, educator, and participant who interprets both fact and nuance.

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