Overview
Advance care planning is a process that aims to align medical decisions with patient values and preferences in the event that the patient cannot communicate. In the context of palliative care, advance care planning discussions offer a framework for exploring a patient’s current values and goals, as well as how these could change as the illness evolves. To facilitate the implementation of advance care planning in palliative care, this chapter explores the following questions:
- 1
Which patients should engage in advance care planning?
- 2
Can patients with cognitive impairments also have these conversations?
- 3
How is the ability to communicate preferences assessed?
- 4
When should conversations occur?
- 5
Who should initiate the conversation?
- 6
What communication strategies are most helpful?
- 7
How should the conversation be introduced?
- 8
What topics should be addressed?
- 9
What strategies can be used when patients and families are reluctant to discuss these issues?
Ideally, advance care planning should begin early in the clinical relationship and should be revisited periodically, especially when changes in health status or goals of care occur. When possible, family members, especially designated substitute decision makers, should be included in these conversations because it is important for them to be aware of any changes in the patient’s values and preferences. Exploring the reasons behind any changes can be very helpful in bringing discordant views into alignment.
Advance care planning is a process that aims to inform and facilitate medical decision making that reflects patients’ values and preferences in the event that patients cannot communicate. This process is achieved in many ways, including conversations with patients and families, the use of written advance directives that document a patient’s wishes, and the participation of substitute decision makers who can represent a patient’s interests, values, and preferences. In this chapter, we first define the terms advance care planning and advance directives and provide a review of the evolution of these terms and mechanisms in practice. We then explore how to practice advance care planning in the context of palliative care and include a set of questions that can be used to guide advance care planning discussions with patients and family members.
Definitions
The Institute of Medicine defines advance care planning as “not only the preparation of legal documents but also discussions with family members and physicians about what the future may hold for people with serious illnesses, how patients and families want their beliefs and preferences to guide decisions (including decisions should sudden and unexpected critical medical problems arise), and what steps could alleviate concerns related to finances, family matters, spiritual questions, and other issues that trouble seriously ill or dying patients and their families”. As such, advance care planning is a process—not a single event—with the goal of learning about both what patients want and what they do not want for themselves in the future. A recent literature review outlined a framework of six goals that commonly arise in advance care planning discussions. These goals include being cured, living longer, improving or maintaining function or quality of life, being comfortable, achieving life goals, and providing support for family caregivers. Some of these goals may coexist, and they may also shift over time. The focus for advance care planning is to elicit what values, goals, and outcomes are important to patients and their families so that care decisions can meet the goals.
Advance care planning includes two basic components: thinking about preferences and goals of care, and communicating these preferences to loved ones, substitute (or proxy) decision makers, and health care providers. For the first component, a patient needs to consider the many factors that influence care preferences, including beliefs about the sanctity of life, estimated life expectancy, current and future quality of life, suffering, the probability of achieving a desirable outcome if treatment is pursued, withholding and withdrawing treatments, and the cost of treatment or nontreatment to the patient and family (in both monetary and nonmonetary terms). Ideally, the person who engages in this deliberation process will be able to identify a personal threshold of acceptability for the benefits and burdens of future treatment and how treatments help them realize their goals of care. For the second component of advance care planning, the patient must communicate preferences to those persons who will be involved in making decisions on his or her behalf. These individuals include legally appointed powers of attorney or proxy decision makers, family members, and intimate others. Values and preferences can be communicated through formal conversations about the person’s wishes as well as through informal discussions about the serious illness or death of family members or friends or about current events in the news that represent good and bad dying experiences. Communication also includes documenting the person’s wishes through advance directives or other means, such as letters or video recordings.
Advance directives can be informal verbal agreements; health care providers’ written summaries of patient values and preferences in the medical record; or formal, legal, written documents. The formal documents have the potential advantage of providing the “clear and convincing” evidentiary standard that is required in some states in the United States (e.g., New York and Missouri) as proof of the person’s wishes in the event of a legal dispute. These documents have two forms: a durable power of attorney for health care, in which the person identifies a designated proxy or substitute decision maker (or decision makers), and an instructional directive (commonly known as a living will), which is a written statement of instructions to guide medical decision making. Living wills often specify treatment preferences under conditions of terminal illness or a persistent vegetative state.
History and Critique
Laws that allow advance directives to guide the use or nonuse of life-sustaining treatments were first drafted in United States in the mid-1970s, about the same time as the sentinel court case involving Karen Ann Quinlan. This young woman was in a persistent vegetative state. When her physicians declined to remove her breathing tube, her parents petitioned the court to remove it. The Quinlans eventually won the case, thus setting a legal precedent for the right to refuse unwanted medical treatments. State laws to the same effect began to appear throughout the United States, and a similar case regarding Nancy Cruzan was settled in favor of the same right in the United States Supreme Court. The legal effort continued in the United States with passage of the Patient Self-Determination Act in 1990, which required that all health care facilities receiving Medicare or Medicaid funding offer patients information about advance directives and inform them of their right to refuse unwanted medical treatments.
The durable power of attorney for health care and instructional directives are recognized as legal mechanisms everywhere in the United States. In Canada, advance directives legislation was passed starting in the late 1980s. Currently, 11 of the 13 provinces have advance directives legislation; the exceptions are New Brunswick and Nunavut. Of the 11 provinces with advance directive laws, all include specific language about appointing substitute decision maker(s). Instructional directives are explicitly included in the legislation in five provinces and recognized as part of health consent legislation in four others; Nova Scotia and Quebec are the two exceptions with no specific language covering instructional directives.
Since the 1970s a great deal of work has been devoted to increasing the access, availability, usability, and completion of advance directives. This was complemented by research and interventions designed to increase the use of advance directives in health care systems and to simplify the language and process of documenting preferences. Additional community-based initiatives were developed to educate the public and to increase completion rates. Elements that contribute to success include a combination of educational materials directed toward patients and their family members and proxy decision makers coupled with systematic efforts to encourage patient–provider discussions over multiple visits. Even with these multimodal interventions, most of these efforts have had modest effects on the rate of directive completion. Currently, approximately 30% of U.S. residents complete written advance directives, although the number of those who have discussed the issue may be larger. Yet even among those who have advance directives, some steps in the advance care planning process may not be complete. Providers may not know that a directive exists, the directive may not be located or brought in when a patient is admitted to the hospital, or it may be ignored or overruled during the hospital stay. There are multiple aspects of written instructional directives that make the application of these documents problematic in practice:
- 1
People must obtain and complete the forms.
- 2
They must predict their future assessments of quality of life and preferences for life-sustaining treatments.
- 3
They must state these preferences in writing.
- 4
The documents must be available for use when necessary.
- 5
The substitute decision makers, family members, and health care providers who interpret these documents must be able to understand them in the context of the current situation.
- 6
The substitute decision makers must then follow the written instructions as originally intended.
Critics argue that these conditions are virtually impossible to meet and that society should abandon this approach to extending autonomy at the end of life. They advocate continued use of substitute decision makers and also endorse the general shift in focus away from the legalistic documents toward the iterative process of advance care planning, which emphasizes eliciting the patients’ values and goals of care rather than specific treatment preferences.
In spite of the critique of living wills, documentation of advance care planning discussions is still necessary to facilitate the transfer of information between institutions, to provide evidence of the patient’s wishes in the event of a dispute, and to guide and support substitute decision makers. Several authors have developed worksheets and workbooks to facilitate this documentation. These documents take different forms. (See the Resources section for links to these different types of documents.) Some emphasize patient values (e.g., the Values History Form), and others offer a range of situations and treatment choices and allow for the identification of personal thresholds for medical intervention (e.g., Your Life, Your Choices and the Medical Directive). Another effort that has had positive effects on the outcomes and processes of care is the Physician Orders for Life-Sustaining Treatment (POLST) form. Technically, the POLST is not an advance directive because it is completed by a physician rather than by the person whose wishes it conveys. It was developed to provide standing physicians’ orders for emergency medical personnel (who cannot legally follow advance directives in emergency situations) and to serve as a transportable document to guide health care decisions between and across health care institutions. However, use of the POLST improves both identification of and compliance with patients’ wishes in multiple settings.
Advance Care Planning in Palliative Care
In the context of palliative care, advance care planning discussions also offer a framework for exploring a patient’s current values, goals, and treatment choices, as well as how these may change over the trajectory of illness. For example, early in the course of cancer, palliative care may primarily serve as a symptom management approach, with the goal being to alleviate symptoms associated with the cancer and disease-modifying treatments. As the cancer progresses, palliative care can become the primary goal of care. Goals of care may shift toward staying at home, maximizing comfort regardless of how that affects participation in daily activities, or finding a balance between controlling pain and still maintaining cognitive function. To the extent that the patient is capable of participating in these discussions, these goals will be established and updated in real time, but these discussions also serve as advance care planning to guide care when the patient can no longer express his or her wishes.
Putting advance care planning into practice requires the consideration of several issues. These include determining which patients are appropriate, deciding when and how to introduce the discussion, selecting members of the health care team who are best suited to initiate these discussions, and establishing the specific areas to be covered.
Which Patients?
All older adults and all patients with chronic or serious illness could benefit from advance care planning discussions, especially those who are likely to experience exacerbations of the illness that could cause loss of decisional capacity and require emergency therapy. Advance care planning offers the opportunity to identify goals of care, to explore contingency plans, and to prepare patients with serious illness for the probable trajectory of the illness. All patients in transition to a terminal phase of illness are ideal candidates.
Can Cognitively Impaired Patients Participate?
Patients with dementia, delirium, and psychiatric illness present unique challenges for advance care planning, but they may still be capable of participating. Patients with dementia, especially those in the early stages, may be able to express preferences for aspects of care, such as their preferred substitute decision maker. Keys to success include initiating the discussion when patients are doing their best and framing questions in simple terms. It is far better to try to elicit preferences and to assess how much is understood than to assume that persons with dementia cannot participate at all. Patients with psychiatric illness also may be able to participate in advance care planning. During periods of remission or when their illness is well controlled, they can express preferences for future situations of decisional incapacity. They may complete two kinds of directives: a living will to guide end-of-life care and a mental health advance directive to guide care during acute exacerbations of mental illness (see the Resources section for links to examples of both types of directives).
How Is Decisional Capacity Assessed?
For their stated preferences to be legally and ethically valid, patients need to have intact decision-making capacity. However, it is not appropriate to use a diagnosis of dementia, delirium, or other psychiatric illness to connote decisional incapacity because patients with cognitive impairments or psychiatric diagnoses may be able to assess the risks and benefits of some decisions but not others.
Decisional capacity to choose a medical treatment is also not the same as capacity to complete an advance directive. Voicing preferences in a directive is more complicated than choosing to receive or forego a recommended treatment in a contemporaneous situation. Formulating preferences for a directive requires a patient to consider a future time and hypothetical circumstances involving interactions between treatments and health states. Decisional capacity to execute an advance directive presupposes meaningful, comprehensive communication between the health care provider and the patient. Health care providers should try to ensure that the patient understands and appreciates that the choices articulated in a directive will be used in the future when the patient is no longer capable of participating in the decision-making process. Moreover, the health care provider should ensure that the patient understands that choices can involve medical treatments and the designation of a substitute decision maker, as well as the relative strengths and weaknesses of alternative approaches to advance directives. The patient should be able to understand that choices can change over time, and if they do, that he or she can and should change the directive.
When a patient’s decision-making capacity is in doubt, clinicians should assess the elements of decisional capacity. For patients to make decisions about preferred future treatments, they need to have the capacity to do the following:
- 1
Understand broadly that they are thinking about future situations in which treatment may be needed and what that treatment could entail
- 2
Appreciate that these choices would be applicable in future situations in which they develop an illness requiring treatment
- 3
Use their reasoning to reach an opinion about whether the benefits and burdens of having treatment would be acceptable to them
- 4
Choose and voice a goal of care or treatment preference. Difficult cases can be referred for psychiatric or ethics consultation.
When Should Conversations Occur?
The best time for advance care planning discussions is before the patient becomes acutely ill. Many patients are willing to have these conversations but prefer that clinicians raise the topic. Ideally, these conversations should happen in an outpatient setting, before a crisis occurs that could impede the patient’s ability to think through values and preferences carefully. Other opportune times are those that could be viewed as “teachable moments,” for example, after a recent hospitalization or health crisis, when patients raise specific concerns about their care, or when they share stories about the death or serious illness of a close friend or family member. Such moments offer the opportunity to explore a patient’s hopes and fears and the values that shape these feelings.
Many palliative care clinicians meet the patient for the first time in a hospital setting. The challenge then is first to determine whether or in what ways the patient is able to participate in discussions. Even when the patient is seriously ill, clinicians should attempt to include him or her in advance care planning discussions to the extent that he or she is able to participate. However, some situations will require that clinicians identify the substitute decision maker who will be able to assist with determining appropriate goals of care and decision making. For example, this is common in intensive care units, where more than 90% of patients are unable to communicate at the time decisions need to be made about withholding or withdrawing life-sustaining treatments.
Who Should Initiate the Conversation?
Any of the clinicians who establish a relationship with the patient and family can initiate advance care planning conversations. Physicians, nurses, social workers, and other team members each bring different expertise and points of entry. Because advance care planning is an iterative process, it can be enhanced when more members of the health care team participate. However, in order for clinicians to initiate advance care planning conversations routinely, this activity needs to be made part of the culture of health care delivery. Health care leaders need to make explicit their expectation that advance care planning is an important component of high-quality care and reinforce its value in patient-centered care. Moreover, leaders need to institute mechanisms that make advance care planning easy to accomplish. Thus, there is the need for more than mere policies. In outpatient settings, clinic schedules need to allow for sufficient time to discuss advance care plans. In inpatient settings, attending physicians need to be champions and role models for trainees by demonstrating how to engage patients in these discussions and elicit patient preferences regarding future decisions.
Physicians bring the perspective of medical facts and available treatment options to advance care planning conversations. Their knowledge of the patient’s condition and probable trajectories of illness can help patients and families to understand the range of possible outcomes of future decisions. Regardless of who initiates the conversation, it is important to ensure physician involvement at some point in the process because physicians have the ultimate responsibility for implementing medical decisions and they can probe for inconsistencies in the patient’s preferences. For example, some treatment preferences may not match with one another or with stated goals of care, such as, “I want CPR but do not want to be hospitalized.”
Nurses bring their expertise in patient education and may be better suited to exploring the psychosocial aspects of the patient’s life. In hospital settings, nurses frequently elicit patient and family values with respect to treatment goals. They often serve as information brokers, before and after advance care planning discussions, by answering additional questions, clarifying misunderstandings, explaining details of medical treatments, and revisiting topics addressed in earlier advance care planning discussions.
Social workers can initiate advance care planning conversations by introducing the topic of advance directives and by helping patients and families complete legal documents. In their exploration of social support and service needs, social workers may uncover important values and beliefs that shape patient and family preferences. In addition, their understanding of family dynamics is very helpful when the need arises to negotiate differences of opinion or achieve family consensus about changing goals of care.
Other team members, such as chaplains, may have a significant trust relationship with the patient and family and can also be helpful in advance care planning.
What Communication Strategies Are Most Helpful?
Research has identified that good communication skills are vital to the success of advance care planning discussions. Skills that are particularly valued include being able to listen without interrupting, being open to questions, being sensitive to when patients choose to engage or not engage in these discussions, using plain and honest language, ensuring that patients and families understand what is being said, and appearing comfortable when talking about death and dying. Effective communication strategies that invite an open dialogue include using empathy to respond to the patient or family’s emotion and using techniques such as “ask-tell-ask” and “tell me more” to ensure understanding and to elaborate on important values. In “ask-tell-ask,” the clinician asks the patient and family to explain their understanding of the current situation, then tells them the objective for the conversation (e.g., to deliver bad news about prognosis or the need to revisit goals of care given the patient’s change in condition), and then asks again for the patient and family to restate their understanding. “Tell me more” is a strategy that allows clinicians to determine whether patients and families need more information to understand the situation or the decisions that need to be made, how they are responding emotionally to the conversation, and what the conversation means to them. All of this is useful in deciding how to pace the conversation and what topics should be addressed.
How Should the Topic be Introduced?
There are many ways to introduce the topic of advance care planning, and the choice depends on the clinician–patient relationship and the setting where the conversation takes place. Normalizing the topic and being comfortable discussing it help to put patients and families at ease. In outpatient settings, it is important to explain why the topic is being raised during this particular appointment. Box 20-1 offers some possible scripts that could be used under different circumstances.
Related posts:
Stay updated, free articles. Join our Telegram channel
Full access? Get Clinical Tree
