The Imperative to Care, in Good Times and Bad

By Dave Andrusko

Nikki Kenward

We’ve written several times about the potentially historic case of “M,” a 51-year British woman diagnosed to be in a “minimally conscious state” whose family is in court trying to win the right to withdraw her food and fluids. At issue is whether the courts will take another step down the slippery slope.

In 1993 the House of Lords ruled that a patient in a so-called Persistent Vegetative State (PVS) could be “allowed to die” by having their food, fluids and treatment withdrawn. Since then 43 people diagnosed to be in a PVS had been “allowed to die.” This although there have been studies showing that as many as 40% of patients in a PVS have been misdiagnosed.

Nikki Kenward knows about what it is to be at one point totally paralyzed, unable to communicate except by the blinking of an eyelid, and living today with a serious disability. Her piece last week in the Daily Mail is powerful on so many levels that you will think about the powerless in ways you would never have imagined.

Kenward never minimizes the challenges  to either the patient or the family. She understands why they would put themselves in “M’s” place, see little hope for recovery, and imagine death a “blessed relief.” But she asks them to think again—to ponder the  kind of first order questions the family (and by extension the rest of us) need to address.

Kenward cites cases like Martin Pistorius, the author of “Ghost Boy.” It was not until twelve years after he appeared to have fallen into a comatose state at age 12 that a nurse “intuitively became convinced that he was fully aware, despite showing no outward sign of it,” she writes.

“And it was only when he was given the opportunity to communicate, using a technology that recognised his virtually imperceptible head movements, that he was finally able to express himself. That’s when his parents realised that he had heard their debates over whether he should live or die. How relieved they must feel now that a decision was never reached.”

There is so much to consider—including the agony a death by dehydration inflicts– but let me mention just one more extraordinary insight. “I would first ask them to give themselves another chance to love M in a different way. She has changed, as everyone does when life deals them a terrible blow. But she is still a person, and her dependence on others should not determine her right to live.” Yes!

But I would add a reversal of that imperative. I am in a situation now where I am trying to help a very, very old woman realize there are reasons to live. That just because she is not the woman she once—young and active— does not mean that she is any the less significant or any the less fully human or any the less important to me.

She needs to love herself and value herself in a different way, for who she is now, not whom she once was. She also needs to know that we are in this together, she and I–that it may be as important for me to be able to demonstrate my concern for her as it is for her to receive it.

Kenward ends with this:

And what about those who are left behind? Do we really believe that gradual desensitisation to killing has no impact on the rest of society?

By creating a world in which death happens whenever it is deemed convenient, are we not gradually erasing what was once an important part of our life experience? The experience of death itself: the natural loss of our loved ones, no matter how long and difficult the journey to the end may be.

A good and dignified death is not determined by schedules, budgets or the patience of a third party, it is one that teaches us the most about the realities of love and life. 

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