WHAT CAN WE LEARN ABOUT ACP IN THE NURSING HOME FROM TV GAME SHOWS?
With this broad overview of nursing homes in mind, we can use TV game shows as analogies to highlight key challenges faced by those engaged in ACP in nursing homes. The television game show can be used heuristically to encourage discussion of the rules governing the experiences of dying or serving as a surrogate. The concept of a “game” underscores the role of chance. Residents can know what their preferences are, yet sometimes land in unexpected situations. We focus on three popular, recent U.S. game shows. Readers unfamiliar with the shows are invited to view actual episodes online, as the rules of the games are briefly sketched, rather than thoroughly described.
Jeopardy: The Importance of Asking the Right Question
As they play Jeopardy, “America's Favorite Quiz Show,” contestants are presented with answers, and to score points, must come up with appropriate questions. The game board is divided into columns naming various topics (e.g., history, current events, sports, or even “Potent Potables”). Under each topic are a series of answers, whose correct questions earn increasing amounts of money. The contestant selects a topic and a dollar amount. The host reads an answer, to which the contestant must give the question to score points. By way of example, in the case of this chapter, if the answer is “health care agent” then the contestant is to provide a question, to which “health care agent” would be the correct answer. A contestant might say
something like, “What is the name for a person making health-related decisions on behalf of an incapacitated adult?”
In Jeopardy, the board provides the answer and the contestant the question. The U.S. health care system has developed the answer, “ACP.” It behooves people involved in health care to consider all the important “questions” to which ACP is the response. It is common to think of the question as “what means can adults use to communicate their medical wishes in the event they become incapacitated?” In turn, “communicate their medical wishes” is sometimes reduced to two questions: Who should be appointed as surrogate decision maker and what medical interventions are to be pursued or avoided? Often, preferences related to decisions about CPR and the use of artificially administered nutrition and hydration are discussed. These are important issues. Yet a more complete question to the answer “ACP” would underscore the importance of knowing the residents' goals of care—in other words, “What is it they hope medical care can help them achieve?”
The Importance of Knowing Goals of Care
Confusion about goals of care jeopardizes the residents' quality of care. A clear understanding of the goals of care guides decision making about specific medical interventions. Residents' values and beliefs drive their goals of care. Their social history, medical history, and experiences of the health care system condition their expectations. Their goals may change over time as their lives and conditions change, and their understanding of their condition changes. It is crucial to conceive ACP as a process rather than an event, in part, precisely because people change their minds about their goals of care. Because of the central role that goals of care play in ACP, it is imperative to begin engaging in ACP conversations well before people suffer cognitive decline.
When nursing home residents become unable to communicate and engage in medical decision making, a clear understanding of the goals of care can guide decision makers. Health care agents inform and remind the health care team of the residents' goals, as care plans are developed and carried out. The quality of medical care lies, in part, in the extent to which the care delivered is consistent with patient preferences. If we don't know what the patient (in this chapter, the nursing home resident) prefers, how do we know if we are providing patient-centered care?
Kaldjian, Curtis, Shinkunas, and Cannon (2009), surveying the literature published between 1967 and 2007, concluded that the following six categories account for the vast majority of goals of care: (a) cure;
(b) longer life; (c) function/quality of life/independence; (d) comfort;
(e) achieve life goals; and (f) support for family/caregivers. The set of six
goals of care categories can be used to organize a discussion among residents, health care agents, and staff. The residents' goals of care should be reviewed whenever their condition changes, at every quarterly care plan meeting, and whenever residents or families wish. Residents, family members, and staff should discuss under what conditions residents would want to change their goals of care. In other words, are there changes in health status, prognosis, or other factors that would prompt residents to change their goals of care? Knowing this answer could help the health care agent, in the event the resident becomes unable to communicate.
Understanding and accepting the residents' goals of care cannot provide all the answers ahead of time; nor can they provide a detailed map for surrogates to follow in all situations. A grounding in residents' goals of care frames the discussion of possible interventions and the ends toward which the interventions aim. An ACP process that includes a thorough discussion of goals of care can be likened to the resident providing the health care agent with a compass, a tool to help point them in the right direction. Because for many residents suffering multiple advanced chronic conditions, there is no one clear road map to cover all possible medical scenarios in the indefinite future. Even though it is not realistic to have the resident weigh in on all possible future medical decisions, there are decisions about key medical interventions that should be discussed. For example, knowing whether the resident would like CPR attempted in the future is important, as well as the resident's preferences related to the use of a tube to provide nutrition and preferences related to pain and symptom relief.
There is a mechanism that many states have adopted to document the scope of desired treatment for people approaching the EOL. The mechanism is a Physicians Orders for Life-Sustaining Treatment (POLST). In 1991, Oregon introduced POLST (see Chapter 6), and it is now a recognized medical standard of care in nursing homes and hospices in many parts of the country to ensure that goals of care are reviewed and then converted into medical orders. The completed POLST form is to remain with residents when they transfer settings. POLST forms document physician orders regarding attempting CPR, tube feeding, and the level of medical interventions in the event of a medical emergency. Currently, a dozen states have endorsed POLST programs and 18 are developing programs (POLST, 2012). Wisconsin's Gunderson Lutheran Medical Foundation's, “Respecting Choices” model of ACP includes POLST when working with persons with advanced chronic illness (respectingchoices.org/).
A part of ACP involves appointing a surrogate decision maker. When conducting this planning, staff and residents must recognize the enormous responsibility imposed on people when asked to make medical decisions on behalf of a loved one who is not able to communicate. The surrogates' feelings need to be taken into account as part of the ACP process. Many of the models designed with ACP as the answer are aimed at facilitating
decision making and the communication of the patients' specific wishes. This is necessary but not sufficient, in part because of the complexity of the circumstances that surrogate decision makers may face.
It is time to recognize that surrogates can suffer emotional, psychological and spiritual harm, when, responsible for ensuring that their loved one gets the care wished for, they see the plans fail, in some cases through no fault of their own. Part of the ACP process should be an opportunity for the nursing home residents to clarify that they do not hold the agent 100% responsible for the outcomes. Some family members serving as surrogate decision makers will be relieved to hear comments such as, “I don't hold you responsible for the fact that I am mortal,” “I'm not completely sure myself what I would want 2 or 3 years from now, or if the situation were completely different,” “I appreciate you staying with me on this part of my life's journey,” or “ I deeply value your peace of mind, and thank you for contributing to mine by being willing to serve as my surrogate.” Persons facilitating ACP conversations should be mindful of the importance of recognizing this opportunity to include the conveyance of these messages, as well as goals of care and intervention preferences. Another benefit of conceptualizing ACP as a process and not an event is to be able to continue to support the health care agent.
If the Jeopardy answer is the “ACP process,” it is time to consider broadening the question to include the feelings of the surrogate. Ideally, the process helps the agents to feel empowered to represent the wishes of the residents, without overstating their responsibility for outcomes. The best question then may be, “What is a process by which adults can communicate their goals of medical care, provide guidance on specific interventions, and communicate their appreciation to surrogates for being part of the process, in the event they lose the ability to communicate in the future?” As mentioned earlier, Kaldjian et al. (2009) determined that one of the most commonly reported patient goals of care is to support family members. Considering the emotional needs of the surrogate decision maker can be a form of addressing the residents' goals of care. Following the example of Jeopardy, it is time to broaden the question to recognize the emotional impact of this responsibility on surrogates, when the answer is “ACP.”