The authors of this report use a clinical case to highlight the difficulties of integrating patient preferences in making decisions in medical care based on evidence-based medicine. As an increasing number of evidence-based performance measures are used to monitor care, there has been growing awareness that patient preferences should play a major part in medical decisions. It has been suggested that some physicians, in the interest of patient autonomy, tend to place too much of the burden of medical decision-making responsibilities on patients. Although it is clear that patients’ preferences and values should not be the sole drivers of clinical decisions, it is also increasingly clear that wide gaps remain in the practice of shared decision making.
The case involved a 75-year-old man with congestive heart failure with repeated admissions to a hospital. Because he was not a candidate for a heart transplant, his cardiologist recommended a destination ventricular assist device (VAD). The patient was ambivalent about trying the VAD.
Progress has been made in incorporating patient preferences in medical decision making, but much more work is needed. To this end, the authors have developed a 5-step framework for incorporating the best features of an evidence-based and preference-based approach. The first step in practicing preference-based medicine is to have an effective meeting of the patient, family members, and appropriate members of the treatment team. Clinicians must carefully clarify the medical evidence concerning benefits and burdens of future treatment. The second step involves sharing information and expertise with the patient and family. The treating physicians should explain treatment options and prognosis with and without the treatment while learning about the patient’s values, priorities, and expectations in light of the medical facts.
Patient preferences may be broad in that some may lean toward aggressive interventions to prolong life and others toward naturalism. The third step is to critically evaluate the evidence and identify physician and patient biases that might influence decision making. Unrealistic overly optimistic expectations of prolonged life or acceptance of the likelihood of death have a major impact in patient preferences. The fourth step involves integration of the information from the evidence-based and preference-based approaches and making a recommendation on future care. In the case of the patient with end-stage congenital heart defect, the treating cardiologist evaluated the benefits of a VAD in light of patient and family expectations, goals, and clear understanding of the likely outcome with and without VAD insertion. With input from the VAD and palliative care teams, the cardiologist recommended against a VAD. After discharge to home hospice, the patient continued his heart-failure treatments, hoping to live as well and as long as he could without further invasive interventions.
In the fifth step, physician performance is evaluated. All aspects of the decision-making process are examined to ensure that the recommendation of the clinicians incorporated the preferences of patients and families. This case demonstrates that medical decisions regarding future care that allow patients to get the most out of medical interventions are those that integrate the preferences of informed patients and families who understand the clinical implications of the decision.
From the Department of Medicine (T.E.Q.) and the Department of Neurology (R.G.H.), Palliative Care Division, University of Rochester Medical Center, Rochester, NY