4. ADVANCE CARE PLANNING AND END-OF-LIFE DECISION MAKING

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CHAPTER 4. ADVANCE CARE PLANNING AND END-OF-LIFE DECISION MAKING
Crystal Dea Moore
Advance care planning is a collaborative process among patients, family members, and health care professionals whereby patients clarify their goals, values, and preferences for future medical treatment (Tulsky, 2005). As part of the advance care planning process, patients may choose to complete advance directives, which are legal documents that specify treatment preferences (e.g., living will), and formally appoint decision-making surrogates (e.g., durable power of attorney for health care). Patients, family members, and health care professionals can have both unique and shared goals related to advance care planning and advance directive completion (Kolarik, Arnold, Fischer et al., 2002). For example, increased communication about patient treatment preferences can be an objective for all three groups. For patients, advance care planning provides an opportunity to increase knowledge about and perceived control over the dying process. Families can learn about patient preferences related to end-of-life care, which can inform the decision-making process. Decreasing conflict with family members and decision-making surrogates about patient treatment plans can be an outcome desired by health care providers. Appropriate and thoughtful advance care planning can serve numerous interests.
This chapter seeks to describe strategies to promote advance care planning and broad issues in surrogate decision making in end-of-life care. Challenges to the process are addressed, and communication strategies to meet these challenges are described. Specific suggestions to help clinicians begin and maintain discussions about patient values and goals and descriptions of the legal documents used to record patient preferences are offered. Finally, issues specific to surrogate decision making are discussed. This chapter is intended to be a practical guide to the advance care planning process for clinicians.

THE ADVANCE CARE PLANNING PROCESS

The advance care planning process can be a challenging endeavor for numerous and complex reasons. The challenges associated with engaging patients and families in meaningful discussions about goals, values, and future treatment preferences can be mitigated through the development of communication strategies that promote honesty, trust, rapport, and respect. Health care professionals can be integral to initiating and maintaining discussions about patients’ relevant goals and values that provide the context for treatment preferences and care plans at the end-of-life.

Challenges in Advance Care Planning

Given clinical and human realities, there are numerous factors that can hinder the advance care planning process, including health care system influences, deficient communication skills, and various psychological barriers. Meaningful advance care planning discussions are borne out of a trusting relationship between the patient and clinician, something that takes time to nurture and cultivate. Health system issues, including professional time limitations on visits with patients and families, and patient engagement with multiple providers can impede a professional’s capacity to build rapport and trust (Kolarik et al., 2002; Tulsky, 2005). Clinicians may lack specific training in communication skills and the willingness to broach and maintain discussions about potentially sensitive, emotionally charged issues with patients and families. The overuse of medical jargon can also interfere with patient education, comprehension, and meaningful, clear discussions (Limerick, 2002; Reisfield & Wilson, 2003). Finally, patients and families may be reticent to ask clarification questions, not wanting to appear ignorant or to step outside the expected role of the “good patient.”
Psychological barriers, including fear and anxiety, can also influence the quality of advance care planning discussions. Clinicians may be concerned about causing psychological harm or destroying patient and family hope through frank discussions about diagnosis and prognosis (Morrison, 1998; Steinhauser, Christakis, Clipp et al., 2001). Patients and families can also become emotionally stressed during discussions that convey bad or sad news, and their abilities to process and respond to information can be limited. Finally, patients, families, and clinicians all have a set of unique experiences related to illness and dying, and those previous experiences can influence expectations about and willingness to address such issues in the present, thereby affecting communication quality (Lee, Back, Block et al., 2002; Moore, 2005a). Despite these challenges, clinicians can develop communication strategies to engage patients and families in the advance care planning process.

Communication Strategies for Advance Care Planning

The development of a trusting relationship with patients and families is integral to high-quality medical care, especially at end-of-life (Tulsky, 2005). The quality of the patient-clinician relationship trust and rapport can be enhanced by encouraging patients to share their concerns and questions using active listening, demonstrating respect, talking in an honest and straightforward manner, being sensitive when delivering difficult news, and maintaining engagement about advance care planning issues with the patient and family throughout the disease process (Moore, 2005b; Quill, 2000; Tulsky, 2005; Wenrich, Curtis, Shannon et al., 2001). Encouraging questions and open discussion of concerns is facilitated by active listening skills. Active listening and avoiding the tendency to interrupt can give patients and families the sense that the clinician truly cares and is invested in understanding their perspectives.
Some advance care planning discussions can be emotionally charged, and providers need to develop skills that manage this affect (Tulsky, 2005). Discussions fraught with emotion are often difficult for providers. Not all concerns uncovered during palliative care discussions have solutions (e.g., finding meaning in the illness experience, fear of dying, being overwhelmed with caregiving responsibilities). Whether or not such painful emotions are expressed, many patients and families coping with advanced illness experience them regardless, and opening up dialogue about difficult emotions can reduce the isolation they are apt to feel (Lo, Quill, & Tulsky, 1999). Lo and collegues (1999) remind clinicians that they “do not have sole responsibility for responding to the patient’s suffering” (p. 747). Referring troubled patients and families to a social worker, psychologist, member of the clergy, or another mental health professional can be helpful and appropriate.
When patients and families do become emotional, Tulsky (2005) suggests that providers:
1. Acknowledge the affect (e.g., “Making these decisions is not easy. This must be overwhelming.”)
2. Identify loss (e.g., “It must be hard thinking about what kind of care you want when your condition gets worse. I know how much you value your independence.”)
3. Legitimize feelings (e.g., “Many patients in your situation become sad thinking about these decisions. I think that is normal under the circumstances.”)
4. Offer support (e.g., “I will be here for you throughout your treatment.”)
5. Explore (“You said that you were scared about the future. What scares you the most?”)

Direct discussion and validation of emotion without false reassurance or premature advice giving can be effective in diffusing emotionally charged clinical discussions.

Trust and respect are further cultivated when providers communicate in a straightforward and honest, yet sensitive, manner. Evidence suggests that a vast majority of patients want to be fully informed about their illness and what to expect about their physical condition (Jenkins, Fallowfield, & Saul, 2001; Steinhauser et al., 2001; Wenrich et al., 2001). In one study, patients and family members ranked honest and straightforward discussion as one of the most important aspects of patient-provider communication in end-of-life care (Wenrich et al., 2001). They wanted physicians to be willing to discuss dying and to balance honesty and sensitivity. This is a formidable challenge to providers in palliative care but one that is important to quality advance care planning discussions. The Wenrich study indicated that poor communication “[s]temmed from being too blunt, not picking an appropriate time and place to provide bad news, and giving the sense that there was no hope” (p. 872).
One way of balancing hope and honesty in the context of ongoing advance care planning discussions is to frame discussions with patients in terms of ‘hoping for the best yet preparing for the worst’ (Back, Arnold, & Quill, 2003). Patients’ hopes can be discussed while anticipation of and preparation for future health states and treatment scenarios are explored. Such discussions can start by clinicians articulating hope and preparation early in the course of treatment and then revisiting the topic throughout the disease trajectory. Patients can be asked, “Could you tell me more about what you are hoping for? That will help me do a better job for you” and “What are your concerns if things do not go as we hope?” (Back et al., 2003). Supporting and validating the patient’s hopes, fears, and other emotions that result from such discussions are important. It is also important to note that what patients and families hope and prepare for can change during the disease trajectory. For example, during the early stages of the disease, hope may be invested in cure. As the disease progresses and attempts at cure show little success, providers can explore other hopes of the patient and family and what preparations need to be made.
Finally, it is important that health care professionals be aware of their nonverbal behavior and the context in which communication occurs with patients and families. Self-awareness of one’s nonverbal communication is the first step in making needed changes. Practitioners should assess how they carry themselves when interacting with patients and families. Do they have an open posture that invites discussion (e.g., avoiding crossed arms)? Do they make appropriate and consistent eye contact? Environmental issues, such as privacy and avoiding outside interruptions, need to be considered, particularly when sensitive issues are addressed. The setting and the manner in which a message is conveyed can be powerful and have the potential to affect overall communication quality. Box 4-1 provides suggestions related to rapport-enhancing communication strategies.
Box 4-1

Verbal Strategies Nonverbal Strategies
Use open-ended questions to explore patient concerns.
Paraphrase the content of the patient’s communication using some of the patient’s own words.
Validate patients’ and family members’ feelings.
Summarize broad themes during the interaction.
Deliver diagnostic and prognostic information sensitively and with empathy.
Assess preferences for receiving medical information.
Avoid the use of medical jargon.
Give patient undivided attention.
Avoid multitasking.
Directly face the patient at eye level.
Avoid distracting mannerisms.
Maintain an open posture.
Lean forward.
Maintain appropriate eye contact.
Be sensitive to and aware of cultural differences in nonverbal behavior.
Develop self-awareness about one’s own nonverbal behaviors and what they communicate to others.
From: Moore, C.D. (2005a). Advance care planning. In K.K. Kuebler, M. Davis, & C.D. Moore (Eds.). Palliative practices: An interdisciplinary approach. St. Louis: Elsevier Mosby.

Values Clarification and Discussion of Goals

Advance care planning unfolds over time in the context of the clinical relationship. Through the use of open-ended questions, active listening skills, and documentation of discussions, health care professionals can assist patients in clearly elucidating their values and goals that can ultimately inform end-of-life care. Patients may choose to document their treatment preferences and choices for decision-making surrogates in a formal advance directive, but the advance care planning process is as important (possibly more important) as the advance directive document itself in shaping end-of-life decision making and medical care (Kolarik et al., 2002; Lo, 2004; Tulsky, 2005).
As previously suggested, assessing the patient’s understanding of his or her illness can help the health care professional better understand the patient’s knowledge base and suggest areas for further patient education. It is also important to assess how much the patient wants to know about the illness; although most patients want full information about their condition (Jenkins et al., 2001; Wenrich et al., 2001), not all patients do. Cultural issues may influence this aspect of advance care planning, with some cultural groups preferring not to have direct discussions about diagnosis and prognosis, especially when the outlook is grim (Chan, 2004; Van Winkle, 2000; Yeo & Hikoyeda, 2000). The patient’s preferences in this area can be assessed by directly asking, “How much do you want to know about your illness?” and “Who should we involve in these discussions?” Some patients from diverse backgrounds may only want their family to be involved in discussion about diagnosis and prognosis. Clinicians should educate themselves about cultural traditions of groups with whom they are likely to interact.
Assessment of patient goals can help inform current and future treatment planning. Care plans can be developed that facilitate the patient and family’s short- and long-term goals. What does the patient want to accomplish in his or her life? This can range from living long enough to participate in an important family event (e.g., wedding or graduation) to managing symptoms well enough so that the patient can finish his family genealogy for his loved ones. At certain points in the disease trajectory, cure can also be a patient goal, and curative treatment plans should be developed and implemented. Regardless of patient goals, clinicians can help patients attempt to realize their aspirations through agreed-upon treatment plans; as patients’ conditions change, health care providers can provide education, information, and recommendations and help patients reevaluate their plans.
Developing an understanding of patient values, or the principles, ideas, or qualities deemed worthwhile, can help clinicians deliver appropriate patient-centered care. Including family members and decision-making surrogates in the process of values clarification can lead to better-informed decision-makers and, it is hoped, decisions made by surrogates that are congruent with patient wishes. For some families, advance care planning conversations are not easy discussions to have. Patients and family members alike may be reticent to discuss such issues due to the emotions they can evoke. Clinicians can assist by initiating such discussions during medical encounters that address hopes and plans for the future and what makes life worthwhile for the patient. Patients can be asked to elaborate on what makes life worthwhile for them and to explain what terms such as “quality of life” mean. Various tools have been developed to help guide such discussions, including Making Medical Decisions (American Association of Retired Persons, 1996), Five Wishes (Commission on Aging with Dignity, 1998), Talking About Your Choices (Choice in Dying, 1996), and Your Life, Your Choices (Pearlman, Starks, Cain et al., 2001). Effective advance care planning discussions include those individuals who will potentially make decisions on behalf of the patient.
Another fruitful area for discussion related to patients’ values is the topic of their personal experiences with others’ illness, dying, and death. Patient expectations related to one’s own disease process can be highly influenced by witnessing significant others coping with advanced illness and dying. Clinicians can ask patients if anyone close to them has died of disease and what that experience taught them about death and dying, thereby providing further opportunity to learn about patient values. For example, a patient may say of a loved one, “She was in such pain at the end. If that would happen to me, I want a lot of medication to control the pain” or “He was alone when he died. Dying alone must be horrible.” These statements give considerable insight into personal values that are relevant to palliative care.
Finally, spirituality and existential issues figure prominently in how patients cope with advanced disease and dying. People struggle to make sense of their illness experience, and their construction of meaning can affect their emotional states and compliance with treatment. Clinicians can learn how the patient is making meaning of their disease by asking, “What thoughts have you had about why you got this illness at this time?” (Lo et al., 1999). In addition, spirituality and religious beliefs can influence choices that patients and families make about medical care. Health care professionals can accommodate these beliefs in the context of treatment by finding out if the patient has any beliefs that should be taken into consideration by the health care team.
Exploring patient values and goals can help clinicians develop patient-centered care plans. Inclusion of family and decision-making surrogates in the advance care planning process when possible can decrease potential conflict among the patient, family, and health care team. Completing advance directives as part of this process has been demonstrated to ease the burden of the decision-making process for the surrogate (Davis, Burns, Rezac et al., 2005; Tilden, Tolle, Nelson et al., 2001). Suggested questions to help initiate and maintain advance care planning discussion are listed in Box 4-2.
Box 4-2

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