Advance Care Planning: Focus on Communication and Care Planning Rather
Than on Building the Perfect Form
Ana Tuya Fulton Joan M. Teno
The living will movement was given force in 1976 with the passage of the Natural Death Act in California. This followed the case of Karen Ann Quinlan, who in 1975 was left in a persistent vegetative state at the age of 21 after suffering cardiac arrest. The New Jersey Supreme Court granted her parents' wishes to stop life-sustaining treatments. This case marked the movement endorsing that patients can refuse medical treatment, even if life sustaining, in certain situations. The next landmark case was that of Nancy Cruzan in 1983. Cruzan was a 32-year-old woman who was left in a persistent vegetative state after a car accident. After years of no change, her parents determined that their daughter would not want to be kept alive in her current state; the hospital disagreed, and the courts became involved. Ultimately, the U.S. Supreme Court upheld her right to refuse life-sustaining treatment, but ruled that states can impose safeguards to ensure that there is convincing evidence to support patient wishes (Polaniaszek & Peres, 2008). The debate surrounding living wills and patients' rights to refuse treatment have largely been marked by cases such as those above. In everyday
medical practice, the patients who face these situations are very different. They are not young adults who suffered tragic circumstances and are left in clear persistent vegetative states. Typically, they are older adults or patients with multiple chronic illnesses who have been on a gradual trajectory of decline. For these patients, the decision is often one of choosing quality of life over quantity of time. This decision is never an easy one. To the extent of persons' desire, such decisions should be guided by their goals and values. Often, these decisions are made for persons who lack decision-making capacity.
Some four decades after the creation of the living will, a major area of focus is on creating the perfect form rather than on creating a set of multifaceted interventions and tools that support and encourage communication over time. Advance directives (ADs) should be a product of a larger, more complex process—advance care planning (ACP)—and are one of many communication tools to accomplish this process and not the be all and end all. ACP can be defined as a “structured dialogue with the ultimate goal that clinical care is shaped by a patient's preferences when the patient is unable to participate in decision making” (Teno & Lynn, 1996). This process will help persons formulate goals of care and clarify value sets and wishes, and ultimately design a detailed care plan to honor those wishes and values. The health care provider working with the patient with decision-making capacity or a surrogate decision maker helps to develop care plans that meet those goals and formulates treatment plans for expected events while the patient is dying (e.g., opiates on hand for shortness of breath if the person does not want intubation).
The extent of specification of preference in advance as opposed to the naming of proxy decision maker will depend on the patient's values, prognosis, and where he or she is in the disease trajectory. We propose that for ACP to achieve its goals, multifaceted interventions that are able to deal with many different situations and the many varying types of patients are needed. These will support ACP while recognizing that not every patient or person will be interested in participating. ADs are one of those tools. Family dynamics, patient values, and cultural factors will all affect which tools and what sorts of tailored communication geared to the needs of the patient are required. In some situations, the clinician may need to be paternalistic while in another situation the role of the health care provider is to educate the patient and family about the likely prognosis and treatment options.
In this chapter, we will review the previous research and evidence regarding ACP, noting that many studies have overly focused on the completion of an AD, rather than on a more complex set of multifaceted interventions designed to ensure targeted interventions based on the disease
trajectory and needs of the patient. We will also discuss how to incorporate ACP into medical practice, discussing some of the challenges and pitfalls to doing so with some potential solutions.