End-of-life care and advance care planning in heart failure

Each progressive, life-limiting disease has its particular course. Each disease has it unique challenges to providing good care over that course. Congestive Cardiac or Heart Failure (CCF) is no exception. Perhaps one of the biggest challenges regarding CCF is the fact that the range of survival after diagnosis is so wide. Patients with CCF may have a short or prolonged survival. This variability is both the result of the disease and the patient’s responsiveness to treatment. Because of the variability of CCF and its effects on individual patients, perhaps it is the best example of why planning in stages can better prepare patients and their surrogates for treatment decisions at the end of life.

In the early stages of CCF, patients might suffer sudden, serious cardiac events including both respiratory and cardiac arrest. Attempting to treat these complications makes sense, but it can be extremely helpful to have an appointed surrogate to make decisions if the patient cannot and to know when a serious, permanent neurological injury might lead to a shift in the goals of care.

When CCF reaches a New York Heart Association Class III or IV, where complications may come more frequently and be more serious, planning needs to become more detailed. A recent randomized, clinical trial demonstrated how a disease specific, patient centered, structured interview with a patient who has CCF and his or her selected surrogate, can make a difference. The purposes of the interview were: 1) to assess the patient and surrogate understanding of the patient’s illness, experiences, hopes, fears, and concerns; 2) to provide individualized information about disease specific treatment choices and their benefit and burdens; 3) to assist in the documentation of disease-specific goals of care; and 4) to prepare the surrogate to understand the patient’s choices and make future decisions to honor these choices.