Wednesday, November 5, 2014

Euthanasia: Coming Soon to a Hospital Near You?

Picture from the NY Times of Geraldine
Kentish and her children

An article called "Mother Who Provides Round-the-Clock Care Finds Solace in Her Home" just turned up in my inbox. It's from the New York Times' holiday series The Neediest Cases which I remember reading annually decades ago when the paper arrived daily at my parents’ door as, well, pages of paper. I have never read them online.

But this particular profile caught the hubby's eye because it's about an impoverished single mother's devotion to her two children with disabilities. She has stoically persevered in the face of odds that would have had many of us raise a white flag.

When you read it you’ll need to remind yourself that this is not happening in a third world country. Here's how it gets started:
Whenever Geraldine Kentish and her daughter Ena return home — from whatever errand or doctor appointment lured them out — Ms. Kentish gently takes away Ena’s walker so that she can climb the stairs to their second-floor apartment on her own. Ena, 27, has cerebral palsy, and one of Ms. Kentish’s major caretaking missions is ensuring that Ena remains physically strong. No matter how slow or wobbly the stair-climbing proves to be, Ms. Kentish prefers it to the alternative.
“I have a wheelchair,” she said. “I don’t want her to use it. I don’t want her to get used to that. I want her to walk, to exercise. She will want to stay in the wheelchair. I can’t have that.” Ms. Kentish, 55, also has a 9-year-old son, Kavon, who has attention deficit hyperactivity disorder. She is taking care of Ena and Kavon by herself...
I was still in the grips of awe when the story of another mother's devotion to her child (here) with disabilities filled my screen.

Charlotte Fitzmaurice quit her nursing job in order to care for her daughter, Nancy, born blind with hydrocephalus, meningitis and septicaemia which left her unable to walk, talk, eat or drink.  Charlotte's tale takes some disconcerting twists and turns. Ultimately, after twelve years, she sought a court order permitting hospital staff to withhold fluids from her daughter until she died.

"Had no quality of life, just permanent pain"
Her application was granted immediately, setting a legal precedent. It is the first time a child breathing on her own, not on life support and not suffering a terminal illness has been allowed to die in the UK.

I can’t predict how I would act in this situation. After all, C.’s list of disabilities isn’t identical to Nancy’s. Nonetheless, I’m certain I would not hasten C’s death. That’s not to say that I condemn what Nancy’s mother did. It’s just that my upbringing, religious beliefs and gut feelings would all undoubtedly place such action out of bounds for me.

However, the ramifications of this landmark decision could affect us all. Which future decisions might it augur? Could it propel society drastically down a slippery slope? The High Court Justice Eleanor King said of Nancy: 
“In her own closed world, she has had some quality of life. Sadly that is not the case now.”
And bear in mind: Great Ormond Street Hospital, the one treating Nancy, convinced she deserved “a quicker, more painless death”, actually brought her case to the High Court of Justice.

Will we soon encounter more doctors and judges making that same determination about our children? Might we soon feel pressured by them to follow the Fitzmaurices’ lead? To rid the medical system of difficult, frustrating, chronic cases?

Many of Nancy’s health issues were not very different from those we confront every day.  
“When she was just six months old she was diagnosed with epilepsy and was having daily seizures” (emphasis added), Nancy’s mother told the court. "It was heartbreaking to watch her in so much pain.”
Who would have thought that “daily seizures” are now intolerable?
Nancy’s mother also wrote to the court: 
“After a whole weekend of her screaming in agony, I decided I wasn’t going to watch my little girl suffer any more.”
Excuse me? One weekend of screaming and it’s time for euthanasia?

Admittedly, an operation in May 2012 to remove kidney stones left her with an infection for which specialists said there was nothing more to be done. We are told that Nancy had grown immune to even a cocktail of morphine and ketamine.

Did her parents make the rounds of doctors for relief? There is no mention of that. Anywhere.
“The light from her eyes is now gone and is replaced with fear and a longing to be at peace.” (source)
Even pro-euthenasia activists concede that cases involving children unable to communicate are far more complicated than those of communicative adults. Really, how could Nancy’s eyes be “read” this precisely by her parents?

“Watching my daughter suffer for days while they cut off her fluids was unbearable. She went in pain. It will stay with me forever.”
That does not sound much like “mercy” killing to me.

The victorious Fizmaurices are not through fighting. Charlotte says
"It shouldn’t have to be a mother’s ­decision to end a child’s life, I believe ­hospitals and parents should be able to decide without mothers or fathers going to court."
Yikes! Let’s hope that they do not win this next battle.

1 comment:

Elizabeth said...

This stuff is horrifying. The minute -- no second -- these "issues" become part of institutions, like government -- it's all doomed.