Goals of Advance Care Planning

Advance care planning refers to any planning by patients for decision making in the event of future decisional incapacity. Although it could refer simply to signing a form in a lawyer's or doctor's office, ideally it creates an opportunity for patients to explore their own values, beliefs, and attitudes regarding quality of life and medical interventions, particularly as they think about the end of their lives. Patients may speak with loved ones, physicians, spiritual advisers, and others during the process. This reflective work can help patients make important decisions about issues that may come up even when they still have the capacity to make decisions. When a patient loses decision-making capacity, physicians and loved ones who have been involved in the advance care planning process may feel that they know the patient's goals and values better. This allows them to make medical decisions that are likely to be consistent with the patient's values and preferences.

Advance care planning accomplishes a variety of goals for patients and families. First, patients may use the process to clarify their own values and to consider how these affect their feelings about care at the end of life. Second, patients can learn more about what they can expect as they face the end of life and about various options for life-sustaining treatment and palliative care. Third, they can gain a sense of control over their medical care and their future, obtaining reassurance that they will die in a manner that is consistent with their preferences. Finally, patients may increase the probability that loved ones and healthcare providers will make decisions in accordance with their values and goals.

Advance care planning may serve other goals, not directly related to medical treatments. Patients may wish to relieve loved ones of the burden of decision making and to protect loved ones from having to watch a drawn-out dying process. Patients also may use the process to prepare themselves for death. Advance care planning may help one reflect more deeply about one's lifeā€”its meaning and its goals. Patients may reflect on relationships with loved ones, "unfinished business," and fears about future disability and loss of independence. In this way, advance care planning may improve patients' feelings of life completion and satisfaction with their treatment in their final days.

Many people engage in advance care planning through conversations with their lawyers or loved ones. Peter A. Singer and colleagues reported in 1998 that among the HIV patients that they had studied, many had engaged in serious discussions with loved ones but had not seen any reason to involve their doctors. Nevertheless, physicians, physician extenders, nurses, chaplains, and medical social workers can play an important role in assisting patients in advance care planning.

Healthcare providers have their own reasons for wanting to engage their patients in advance care planning. First, providers may use these discussions to reassure patients that their wishes will be respected. This can enhance a sense of trust. Second, providers may hope that advance directives will help to decrease conflict among family members and between family members and the healthcare team when the patient is seriously ill. Finally, they may hope that advance directives will assist them in making difficult decisions when the patient has lost decision-making capacity.

Advance care planning discussions vary depending on a patient's state of health. Patients who are in good health may benefit from selecting a healthcare proxy and thinking about whether there are any situations so intolerable that they would not want their lives prolonged. When patients are older or have more serious chronic illnesses, physicians may wish to begin a discussion that is broader in scope. Although many view advance care planning as an opportunity for patients to make known their "preferences" for treatment, many patients do not have well-formed treatment preferences. By careful exploration of patients' values, healthcare providers can help patients discover these preferences. Patients can be asked to talk about their goals for life, their fears about disability, their hopes for what the end of their life will look like, and their ideas about states worse than death. This expanded view of advance care planning allows people to think about their mortality and legacy. From such discussions, healthcare providers can help patients consider specifically whether there are certain treatments that they might wish to forgo, and to think about the circumstances under which they might forgo them.

When the patient's illness has progressed to its final stages, healthcare providers can use the groundwork from these earlier discussions to make specific plans about what is to be done when the inevitable worsening occurs. Among other things, the patient and the healthcare providers can decide the following: Should an ambulance be called? Should the patient come to the hospital? Which life-prolonging treatments should be employed and which should be forgone? Are there particular treatments aimed at symptomatic relief that should be employed?

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