When an advanced directive is not enough

No topic is a less likely conversation-starter than our eventual deaths. Still, there is a lot to talk about.

When polled, about 90 percent of people presented with end-of-life scenarios prefer the prospect of dying at home with family and a plan for treatment for comfort, rather than unlimited care in the intensive care unit (ICU). Does that surprise anyone?

Nearly 40 years ago the parents of Karen Ann Quinlan, distraught watching machines keep their daughter alive, launched a court battle in New Jersey to discontinue care they believed only prolonged their family agony. That litigation resulted in the New Jersey Supreme Court recognizing the “right to die” naturally and with dignity in our era of high technology medicine.

That right was secured when a 2011 law, signed by Gov. Chris Christie, set in motion this year’s unveiling of the new Practitioner Orders for Life Sustaining Treatment (POLST) form. When completed and signed by both the patient and doctor, POLST is literally “doctor’s orders” included in the patient’s records. That makes it fundamentally different from advance directives or living wills many people have had for years.

POLST is for patients who know they are, or abruptly could be, near the end of their lives. It is strongly recommended for people in nursing homes, hospice care, those suffering an advanced life-limiting illness, and the frail and weak challenged by routine daily activities.

Patients complete the form with their doctors, beginning with a statement of the “goals of care.” Most people want only as much care as will allow them to die peacefully in the company of those they love. The form, plus directions, is only two pages.

Just as the medical record of a patient’s tests and previous diagnoses guides treatment, so does POLST. Slightly more than one in five deaths in the United States occurs in the ICU. Most of those deaths befall people who, if medicine can help enough during their crisis, will return to a full life. A humane society does no less.

But for a frail, elderly patient living in a care facility with advanced Alzheimer’s disease who suffers a heart attack, we often do too much. POLST is that person’s voice in the final medical emergency when she or he cannot speak, telling family and medical professionals which treatments are permitted and which are not.

To help the conversation, the Ethics Committee at Robert Wood Johnson University Hospital Hamilton makes available information about POLST and the more familiar advance directives.

An advance directive names a medical representative in the event we cannot make our own decisions because of injury or abrupt, unexpected illness. Advance directives, like a will and life insurance, are a good idea for all adults, including everyone in good health.

Patients who know they are nearing the end certainly should have an advance directive and a medical representative. Those actions are not a substitute for POLST, which is a binding medical order that allows or declines specific treatments. Without a completed POLST, the medical representative will have to make those painful decisions.

It is healthy to love life, so it is natural to avoid thinking of our death. Many patients, though, bravely and maturely affirm their lives by making their own decisions about end of life care while they can. For them, their family and doctor, considering and completing the POLST form is an act of love and strength that begins with conversation.

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Chaplain Tedford J. Taylor is the director of pastoral care and training at Robert Wood Johnson University Hospital Hamilton and coordinates the hospital’s bio-ethics committee.