Understanding involves more than providing information on how to complete a legal or statutory document. Individuals need to understand why ACP is important for all adults, the consequences of not planning, and what is involved. For example, in choosing a health care agent, individuals need assistance in understanding the qualities necessary for this role, related responsibilities, and strategies for discussion. Consistent with the principle of informed consent, individuals need information on the decisions that they are being asked to make. Individuals with advanced illness and more complex decisions need specific information to understand their relevant treatment choices and the concomitant risks, benefits, and alternatives. Not only do individuals need adequate information to make informed decisions, they desire it. A recent EOL survey found that 75% of individuals are concerned about not having adequate information about treatment decisions (Regence Foundation, 2011). As people live with advanced illness and decisions become more complex, the desire for accurate and useful information increases (Pfeifer, Mitchell, & Chamberlain, 2003). When patient understanding of treatment options is not embedded in the planning process, individuals are forced to make uninformed decisions at often inappropriate times. Consider the standard question that many patients are asked on admission to a hospital or long-term care facility: “Do you want cardiopulmonary resuscitation (CPR) if your heart or breathing were to suddenly stop?” It is asked as a yes or no question, sometimes by an unqualified individual (e.g., an admissions clerk). Can you imagine being asked this question? What information would you desire before making this decision? Would you want to know the success of CPR in restarting
your heart and breathing? Would you want to know what your physician would recommend based on your medical condition? Would you want to know the complications of CPR or the alternatives? You would likely need time to gather this information and weigh the facts against your personal goals, values, and beliefs. This process of understanding is critical to making informed decisions and consistent with the familiar informed consent process used for making any serious medical decision, such as whether to undergo a recommended surgery or procedure.
Information and understanding are key components of an effective planning process, but individuals also make informed decisions based on personal values, goals, and beliefs (e.g., religion, culture). Individuals need time and assistance weighing these personal variables against the factual information provided. Without time for reflection, individuals may make decisions that, although based on accurate information, are inconsistent with personal values. Consider the individual in a nursing home who is contemplating the CPR decision. Initially, the individual is interested in attempting CPR; however, in further conversation the individual expresses the additional goal of NOT returning to the hospital. The goal of not being hospitalized is in conflict with the choice to attempt CPR because transfer from the nursing home to the emergency department is inevitable. When patients have multiple and conflicting goals such as these, their goals must be clarified and prioritized through a skilled facilitation process. To ensure adequate time for reflection, the planning process must begin well before a medical crisis and be individualized to the patient's expected illness trajectory.
Once understanding is increased and time for reflection is allowed, individuals often value talking to others who will be helpful in personal decision making. Discussions with their physicians, religious advisors, other family, and most importantly their chosen health care agents, must take place prior to completion of a written document. Selecting and preparing a qualified agent is paramount to ensuring that future decisions will be consistent with the individual's goals, values, and beliefs. During one ACP discussion, the author learned that a patient with advanced kidney failure had decided he did not want CPR. Unfortunately, only his renal dialysis staff was informed of this decision. He had not discussed this decision with his health care agent (in this case, his son) or with other family and close friends. He was unaware of the importance of preparing his family and friends to honor his decision and to anticipate what actions were appropriate. This CPR
conversation opened the door for further understanding of his goals and preferences and better preparation for his loved ones.
In summary, the Respecting Choices approach to the ACP process of understanding, reflection, and discussion is distinctly different from the typical approach, which is focused on completion of an AD.