Advance Care Planning

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Anca Dinescu

DEFINITION AND RELEVANCE

Advance care planning (ACP) is defined as the process in which individuals discuss and anticipate how their condition or poor health may affect them in the future and, if they wish, negotiate their preferences for future care plans (1,2). ACP may encompass clinical, emotional, cultural, spiritual, and legal aspects. ACP invites ongoing conversation with the elderly oncologic patient about treatment preferences in the event of worsening illness, even if death is not imminent. ACP also helps providers continue to “hear the patient’s voice” even after the patient has lost capacity to articulate his or her health care preferences.

The Elderly Oncology Patient

ACP for the geriatric patient afflicted by cancer is specially challenging.

■ There is greater variability in functional and cognitive status, with a tendency toward increased dependence on family for the execution of the agreed-upon plan of care (i.e., hospital discharge, the logistics of going through chemotherapy, hemodialysis, etc.).

■ There is higher prevalence of sensory impairments that may affect the quality of the ACP discussion.

■ The presence of multiple health providers involved in care, due to multiple medical conditions, makes the dissemination and integration of the ACP into the plan of care more difficult.

■ There is a lack of available health care decision-making surrogates and high prevalence of guardians secondary to few or absent family members in this age group.

■ There is a relative lack of evidence indicating whether a certain medical procedure/treatment would be clearly beneficial for the elderly patient, as many randomized controlled trials exclude older adults.

IMPORTANCE, MYTH, AND BARRIERS

Most practitioners agree that discussing ACP with their patients is important. In addition, data show that patients are interested in engaging in ACP discussions with their providers (2). Nonetheless, these conversations are perceived as uncomfortable and challenging.

324Myth of Possible Harm

In the past, practitioners expressed concern that discussing ACP with the patient might create anxiety or depression and induce a loss of hope. Subsequent studies have not supported these beliefs (3–7). Most report that patients and families desire open and realistic dialogue about therapeutic options and prognosis. ACP discussions should be guided by the universal rule of informed consent and the patient’s desire for information (2). The role of the practitioner is to ask patients about their wish to know information, and to offer the framework and opportunity for ACP.

Barriers

On the provider side, lack of time, lack of formal training, and ultimately lack of knowledge about what should be included in ACP add to the lack of communication and procedural skills to routinely address ACP. Physicians also may feel insecure about the legal implications of ACP documentation and how to interpret preexisting documents. Providers’ fear of stirring up difficult emotions (8,9) or straining the patient-provider relationship (10) is met at times by patient and family ambivalence and reticence about discussing ACP (11). Lack of reliable prognostication models and lack of data to compare treatment efficacies in elderly represent disease-specific barriers. System barriers include lack of clear standardization of ACP content, confusion among multiple forms of ACP documentation, still-difficult electronic medical records (EMR) repositories for ACP documents, and poor of reimbursement of clinician time (12). The recent change in Medicare payment incorporates reimbursement for ACP in the “Welcome to Medicare” visit in an attempt to rectify this last barrier, but does not cover any ongoing or future discussions. The generalization of EMR addressed the ease of retrieval of completed ACP as compared to a paper chart, but the lack of a designated place inside the EMR still makes it difficult to retrieve advance care plans that are embedded in the progress notes.

THE COMPONENTS OF ACP

There is no standardization of what is expected to be covered during ACP discussions or how to approach the ACP discussion by any professional or quality entity. There are, however, expert opinion and best practices, in the form of checklists or conversation guides.

Making capacity assessment a first step in ACP with the elderly patient is necessary, as cognitive impairment is common and widely unrecognized or underappreciated. Moreover, some types of cancers and cancer treatments are highly associated with worsening cognitive impairment that might impede capacity in some patients. Capacity is a clinical determination, available to every practitioner. Capacity encompasses one’s ability to comprehend the presented information; to weigh proposed benefits, risks, and alternatives; to make a decision; to integrate personal preferences; and to consistently communicate that decision.

ACP discussions may include the following topics:

1. Identification of a surrogate decision maker. Documenting a health care agent or proxy (HCP) or the next of kin (NOK) is a key component of ACP so that in 325the event of loss of capacity to make health care decisions, a proxy voice may be easily identified.

2. Life-long values and preferences for health care are a frequently overlooked and underrated part of the ACP. The description of values and preferences may guide future unanticipated decisions in the event the patients are too ill to speak for themselves.

3. Understanding what is important to the patients, what makes them happy, what worries them, what guides their decisions in life, what they enjoy doing and who their support is will help practitioners and surrogates to honor the patients’ preferences even when they lack capacity to communicate these preferences. The Magic Questions (13) is a simple approach to eliciting patients’ values (see Table 33.1).

4. Identification of patient preferences for the traditional areas of concern in medical care. The words areas of concern refer to three big categories of interventions:

• Complex therapies such as dialysis, chemotherapy, extensive surgeries, and so on.

• Life-supporting treatments that have been addressed in past judicial/legal proceedings and are sanctioned by law in some states (intravenous [IV] hydration and nutrition, code status).

• Interventions and issues that often arise in advanced and serious illness (e.g., prolonged respiratory support, artificial feeding, rehospitalizations, transition to nursing home, and hospice).

Patient preferences in these areas of concern are shaped not only by medical knowledge, but also by social, spiritual, and cultural beliefs and practices. For example, the discussion regarding the use of artificial nutrition for an elderly patient with advanced neurocognitive impairment or end-stage cancer should include an exploration of the cultural, spiritual, and practical beliefs of the patient and/or family in addition to medical citation of risks and benefits.

SYSTEMATIC APPROACH TO ACP

Approach—Overarching Principles

■ ACP is a two-way street. Practitioners should elicit information about patient preferences, but they should also provide education about health care systems, levels of care (long-term care, hospice), the importance of a HCP, and so on as part of the ACP.

TABLE 33.1 Magic Questions Script for Eliciting Lifelong Values During ACP

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