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’mcertain 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
themto 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 herparents 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?

About my blog

C. is the youngest of our children. She suffers from severe epilepsy, blindness, microcephaly and profound cognitive and physical impairment.

We have faced hurdles and gained insights through our encounters with the medical, educational and governmental establishments.

Nobody was there to help or guide us.

I would love to spare parents in the same predicament some of the painful mistakes and wasted efforts we have made.

I am also eager to promote greater acceptance, inclusion and appreciation of our children. The new, heightened awareness of people with disabilities tends to gloss over our children - the ones with profound disabilities. They are a forgotten minority within this minority. Still marginalized and even shunned by many "enlightened" societies, they are a long way off from achieving equal rights.