II Best Practices for Communicating About End-of-Life Care
Susana Lauraine McCune
When advance care planning (ACP) and advance directives (ADs) are successful, they can help ensure patients receive the health care they desire—no more and no less—during life and through death. Research has shown that ongoing communication is the key to successful ACP. Yet due to lack of effective communication among health care providers, patients, and their loved ones, ADs and ACP have been underutilized by professional care providers and members of the general public.
In Part II the authors present successful models and best practices to help professional care providers foster ongoing communication with patients and their loved ones about ADs and ACPs. The conceptual models and clinical best practices presented in this part help accomplish what has previously been difficult to achieve—developing and documenting effective ADs and ACPs and providing for quality of life at end of life (EOL).
In Chapter 8, physician Stu Farber and his wife, Annalu Farber, offer compelling examples of the ways in which uncertainty and competing autonomies can influence ACP and delivery of EOL care. They ask straightforward questions that ignite the process of ACP. In clear, concise, and honest language, they discuss complex reasons that patients and families resist discussing EOL care and formulating an AD, as well as look at challenges to honoring ADs when they are activated. The Farbers pose helpful questions to encourage employing values and the meaning of life as guiding lights
to facilitate communication about ACP. They conceptualize a network of relationships in which communication about EOL care is provided in a vital community.
In Chapter 9, social work and gerontology professor Kathy Black points out how three prevalent trajectories of decline will influence EOL in the 21st century. She discusses the need for planning for EOL care in advance using a long-range, holistic perspective of care needs by key domains, including psychological, social, cultural, spiritual, medical, physical, and financial considerations. Black informs us about behavioral change models that have been applied to ACP and discusses ways in which health care providers' understanding of personality styles can help in doing effective ACP.
In Chapter 10, Susana Lauraine McCune outlines what she calls an “Interdisciplinary Relational Model of Care©” (IRMOC) that invites practitioners, whether they are physicians, psychologists, nurses, social workers, or other professionals working with persons dealing with life-threatening illness, to move from a position of authority and objectivity to a position of partnership and vulnerability. Drawing on relational psychological theory, the IRMOC sees patient and clinician as partners, or companions, in relation to dying and death with both parties profoundly affected by the interactional encounter. McCune argues against a traditional “hands-off” stance in which clinicians aspire for objectivity and dispassion, calling instead for compassion—the condition of suffering together—as well as the use of specific therapeutic communication skills to transform practice in dealing with EOL concerns and ACP.
In Chapter 11, social worker and former president of the Association for Death Education and Counseling Ben Wolfe discusses how ADs are used to facilitate communication among patients, family members, and health care providers. He uses a dramatic personal story to illustrate the twists and turns and complexities of ACP, emphasizing the need for an individualized approach that reflects the uniqueness of each person and his/her family system and the changing dynamics of dealing with dying and death in real life. Wolfe draws on his many years as a grief counselor to give professionals ideas and strategies for encouraging individuals and their families to engage in “conversations that matter” far in advance of a life-threatening crisis.
In Chapter 12, Mercedes Bern-Klug, Jane Dohrmann, and Patrick A. Dolan, Jr., describe contemporary nursing homes, the multiple roles longterm care facilities play in the community, and the variety of care needs residents of these nursing homes may have. They discuss challenges and opportunities related to ACP in nursing homes from the perspective of the nursing home residents and their health care agents, highlighting the enormous responsibility of proxy decision makers and pointing out the need to consider the emotional, psychological, and spiritual concerns they face. Finally, the authors demonstrate common ACP challenges and opportunities through the lens of three popular television game shows, Jeopardy, Wheel of Fortune, and Let's Make a Deal.
In Chapter 13, palliative care physician Cory Ingram outlines an innovative model for guiding families to understand dementia as a terminal illness and to plan for the inevitable decline and death of their loved one. Dr. Ingram presents a compassionate, sensitive approach that delivers the person with dementia from anonymity, affirms caregivers' feelings of guilt, identifies the healing power of hope, and gently educates the caregiver about the futility of aggressive treatment and, in particular CPR, for persons in late stages of the disease. Through the effective communication fostered through Dr. Ingram's communications model Watch Over Me©, family members can do ACP that takes into consideration the expected course of the disease and helps the patient and family live well until the patient's death.
Finally, in Chapter 14, Joe Jack Davis, a general surgeon whose career has spanned four decades, helps us make friends with death by candidly discussing the consequences, sometimes intended, sometimes unintended, of medical treatment, compared and contrasted with an unmitigated disease process, showing ways in which natural death, resulting from natural disease processes can be less painful, involve less suffering, and engender death with dignity. Contrasting longevity with quality of life, Davis clearly delineates the quality of life consequences of “heroic measures” and “do everything possible” requests. Dramatically, Dr. Davis shares his personal AD that is based on a medically specific and values-based rationale and written in terms that provide clinicians and his family clear guidance about the care leading to the “good death” and “dying well” that he desires at the end of his life. Based on his years of practical experience, he stresses the importance of talking with one's loved ones and naming someone to act on one's behalf if one is no longer able to speak for oneself.