Negotiating goals of care is an example of patient-centered medical decision making, which differs significantly from the problem-oriented method practiced commonly in health care in the United States. A patient-centered approach to medical decisions has proven particularly useful in the setting of advanced or serious illness. This chapter discusses a six-step approach to the goals-of-care discussion, including examples of how the steps can be used and, in a case study, real-world examples of this approach in action. Pearls and common pitfalls are highlighted.

Health care in general aims at preventing or curing disease. When you fracture a bone, you go to the hospital to get it fixed. When you acquire bacterial pneumonia, you take an antibiotic to cure it. However, many diseases cannot be “fixed.” Rather, they are managed; examples are hypertension, diabetes, and congestive heart failure. For most diseases that must be managed, increasing longevity, reducing disease-related symptoms, and maintaining function and quality of life for a maximum period of time until the patient’s death are the objects of medical care. As a patient’s disease progresses, medical decisions are influenced more and more not just by medical information but also by the patient’s underlying values and priorities. For patients living with chronic or life-threatening disease, medical decisions are often not as straightforward as they are for simple problems that can be fixed. Rather, these patients face several options that may all be reasonable within the breadth of accepted medical practice.

It is therefore crucial for the health care professional who cares for patients with chronic diseases to be able to elicit underlying values and priorities, to set overall goals for care. Mutually agreed on goals will then lead to appropriate decisions to achieve those goals. It is expected that, as the patient progresses along his or her trajectory of illness, goals may change. For example, for the patient discussed in the case study in this chapter, the initial goal is to cure her cancer, then to shrink it, then to keep it from growing too fast. Another goal may be to be as comfortable and functional as possible regardless of the state of the cancer.

Along the trajectory of illness, several trigger situations invite the patient and health care provider to reflect on and discuss goals of care. These include general advance care planning, a new diagnosis, a change in therapy, the transfer to a new health care provider or institution, and, probably most commonly, the point along the disease trajectory when interventions to cure or control the disease are no longer effective or desired. One reason for this may be that the treatment-associated burden seems to outweigh its benefit.

Patients are open to such discussions. Studies show that between 85% and 95% of patients want to have honest discussions with their health care providers regarding life-threatening diseases. Health care providers do not adequately meet this need. Studies have shown that doctors and nurses underestimate cancer patients’ concerns, do not elicit the goals and values of seriously ill patients or include them in treatment decisions, and generally fail to address their patients’ emotional concerns.

The three chief reasons that doctors do poorly in communicating honestly with patients and families are as follows:

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  Medical education does not devote much time or attention to the development of good communication skills, and medical students see few role models.

  
  
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  The culture of medicine in the Western world focuses on organ systems rather than on whole-patient care.

  
  
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  The physicians’ own attitudes and underlying emotions regarding death and dying also interfere with adequate goals-of-care discussions.

The importance of good communication has been well recognized in the field of palliative medicine. Major educational initiatives such as Education for Physicians on End-of-life Care and End-of-life Nursing Education Consortium (ELNEC) devote significant time to skills training in this area. Communication is a learnable skill that, like many other skills, requires ongoing practice. Brief educational interventions are likely not sufficient to change physician behavior. Intensive communication skills training, however, has been shown in a randomized trial to improve physician communication skills in practice.

For those physicians interested in skills training regarding the negotiation of goals of care, this chapter summarizes a six-step protocol that can be used as a framework anywhere along the disease trajectory, such as advance care planning, discussing treatment options or resuscitation orders, or introducing hospice care. This protocol was adapted from the SPIKES communication protocol for the delivery of bad news, which is discussed in Chapter 3 . It is used in the Education for Physicians on End-of-life Care Project.

The protocol uses the general principle of shared decision making. This principle is considered the current standard of care for medical decision making in the United States. Shared decision making as a process puts great emphasis on patient autonomy while acknowledging the physician’s responsibility to make treatment recommendations that are based both on the patient’s stated overall goals of care and the physician’s medical expertise. The protocol for goals-of-care discussions described here not only reflects common communication styles in the United States but is also strongly influenced by the society’s current bioethical value system. Health care professionals balance the underlying ethical principles of autonomy, beneficence, nonmaleficence, and fairness with a strong emphasis on autonomy.

Studies of health care decision making in other parts of the world show that different cultures prioritize these ethical values differently. It seems most common to place less emphasis on autonomy in favor of beneficence and nonmaleficence. For example, although more than 90% of U.S. physicians share a new diagnosis of cancer with their patients, only 44.5% of competent patients were informed of their prognosis by their physician in a study from southern France. Studies from China indicate that patients there are rarely informed of a new diagnosis of cancer. In African countries such as Nigeria, Egypt, and South Africa, the type and amount of information shared seem to depend on patient factors such as level of education or socioeconomic status. Bruera and colleagues elicited an additional point when studying attitudes and beliefs of palliative care specialists in Canada, South America, and French-speaking Europe. In this study, all clinicians wanted to be told the truth about their own terminal illnesses, but physician predictions about their patients’ wishes differed significantly: Whereas 93% of Canadian physicians thought their patients would wish to know the truth, only 26% of their European and 18% of their South American colleagues thought that most of their patients would want to know about their diagnosis. These results invite the question regarding the degree to which the perceived differences reflect biases of local health care cultures rather than actual differences in patient preferences.

Attitudes toward truth telling also clearly change over time. In 1961, more than 90% of U.S. surgeons did not share a new diagnosis of cancer with their patients. This finding clearly contrasts with today’s practice.

These trends demonstrate that medical decision making and information sharing are processes guided by values and underlying ethical principles that are influenced by culture and will change over time. The element of the protocol proposed here that helps to assess this is the step of asking the patient how much he or she wants to know. This permits the professional to adjust the approach for a given individual. Over time and according to the needs of individual patients and health care providers in different parts of the world, overall patterns may also change.