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Column: A Distinction in N.H. That Could Prove Vital

Plainfield

Both my parents were stricken with polio years before I was born. My father spent some time during the course of the disease in an iron lung to help him breathe. My mother, terrified that if she entered an iron lung she might never come out, refused that mechanical aid and toughed it out. These two very different decisions about what was then “life-sustaining treatment” were made by conscious, rational adults who had a right to refuse or accept the care offered.

Today a lot is written about advance directives, including living wills and durable powers of attorney for health care, which address a patient’s wishes concerning life-sustaining treatment should the person become unable to make his own decisions. The New Hampshire House is expected to consider a bill this week that is supposed to clarify what many see as a confusing part of our advance directives law. Right now, a durable power of attorney gives an agent the right to make your health care decisions for you when you can’t. The form asks if you want life-sustaining treatment (or not) should you become terminally ill or, in a separate question, should you become permanently unconscious. It then asks specifically if you want to continue to have medically administered nutrition and hydration given to you (or not) if it is the only thing keeping you alive.

Many people filling out the form by themselves get confused about why they need to talk about food and hydration, especially if they’ve already said they want all care continued, and they leave this section blank — meaning they will continue to receive food and hydration in all situations. Those who help people fill out these forms have cited the difficulty of explaining the documents and hoped to make them easier to understand.

However, rather than just revamping the confusing question, Senate Bill 170 goes further and redefines “medically administered nutrition and hydration” as life-sustaining treatment. In other words, anyone choosing not to receive life-sustaining treatment will not receive food and hydration, unless they specifically indicate otherwise. That’s the opposite of the current situation, in which food and hydration is withheld only from those who have specifically requested it be withheld.

This proposed change should give us pause.

In the course of dying, it is not uncommon for patients to stop eating and drinking and just let nature take its course. A dying patient’s advance directives can reflect the desire not to interrupt this very natural path.

We should tread with caution, though, when we try to apply the same course to those classified as “permanently unconscious.” Before we make the sea-change of redefining what is normally thought of as standard care given to all patients — food and hydration, however administered — we should bear in mind that “permanently unconscious” is not a medical term. It presumably refers to a patient in a persistent vegetative state.

Diagnosing such a condition is difficult. There are conditions that mimic a persistent vegetative state — akinetic mutism, apallic state, a locked-in syndrome, and psychogenic coma, to name a few. Recovery occurs in some of these cases. A physician needs a sophisticated toolbox to diagnose these cases and, even with all his tests, there are cases in which he can’t be sure. There are well-documented cases of patients recovering after being in a vegetative state for years.

To address this situation, the Senate amended the introduction, “Whether near death or not, if I become permanently unconscious ... ” and added “and life-sustaining treatment has no reasonable hope of benefit ... .” But what exactly does “no reasonable hope of benefit” mean if such a patient is not near death?

There’s an important reason not to include food and hydration among the list of life-sustaining treatments, which more typically includes mechanical respiration, kidney dialysis and other means for artificially postponing the moment of death: A permanently unconscious patient may live when taken off mechanical respiration. Karen Ann Quinlan did, though she wasn’t expected to. But no patient survives when food and hydration is withheld. Terry Schiavo didn’t, and neither did Claire Conroy, Paul Brophy or Nancy Cruzan — to list some of the more prominent cases.

Given the uncertainty of who may be “permanently unconscious” and given the certainty of death if food and hydration are withheld, we should be extremely careful about not being absolutely clear about the choices people are making. If we’re going to give people the right to refuse food and hydration in cases when their prognosis is uncertain, that choice should be specific and clear. Under the Senate’s current version, it’s not.

Supporters of the changes point out that there is a place for additional comments where a patient is prompted to consider preferences concerning nutrition and hydration, but why make someone have to specifically request what is right now considered regular care?

The need for new legislation arose because of the difficulty people were having in understanding the form, not because too many people were being force-fed against their will. This bill seems to be a genuine attempt to make our documents workable. Why can’t this be done without blurring the line about what constitutes a life-sustaining treatment?

Margaret Drye lives in Plainfield and serves as an emergency medical technician for the Cornish Rescue Squad.