Advance care planning is an art, not an algorithm

LIVING WILLS CAN BE USEFUL

Another point on which I disagree with Dr. Messinger-Rapport et al is their assessment of the utility of the living will. They state that a living will applies only to patients who are terminally ill or in a persistent vegetative state. However, I find that it can also supply important information at all stages of illness. While it may lie “dormant” in a legal sense, it can give important information for a family by providing a window into the patient’s state of mind as it relates to the patient’s willingness to limit care in certain settings. Once a patient is able to articulate situations that warrant limiting care, a surrogate decision-maker (or the patient) can try to broaden those limits. It is up to the physician to articulate prognosis so the patient and family can decide how much they are willing to do to maintain that limited level of function. Any treatment can be declined at any time during a patient’s life or illness.

The living will also provides a framework in which to discuss end-of-life issues with a patient. It can open the discussion about current quality of life as perceived by the patient and what level of medical treatment the patient is willing to pursue. As the authors note in their article, those desires are fluid and can change over time. This does not render the living will useless. It shows that the living will needs to be adapted over time to suit the patient’s current situation.

The authors describe a patient with Alzheimer disease for whom a percutaneous endoscopic gastrostomy tube was recommended by a physician but declined by his wife. They assert that a living will does not offer guidance in this situation, since the patient was not, strictly speaking, terminally ill. I disagree. Medical care can delay death for years. If the patient’s quality of life is poor, that delay may violate the implied wishes of the patient and should be discussed. Before he became severely demented, the patient may not have wanted to have his life prolonged if the end result was a continued decline in his already compromised quality of life. The family should have been given that option to consider.

RE-EDUCATING PEOPLE ABOUT LIFE, ILLNESS, AND DEATH

Advance care planning is an essential component of being a physician and taking care of patients. A broad movement needs to be undertaken to re-educate people about the realities of life, illness, and death. The training of our physicians about advance care planning should begin early and should be continued throughout their medical education and careers. One-on-one or small-group mentoring would be an ideal method of training. The attempt to develop an algorithm to guide those discussions tries to simplify a process that is extraordinarily complex. Each situation is different and requires well-developed skills and practiced and mentored intuition. Experience and the art of being a physician cannot be reduced to a “model approach” or a flowchart.