Quality of Life Arguments

When do you let the bough break?

When do you let the bough break?

You have a child with severe disabilities which will someday prove fatal, how much intervention would you accept, or push for?

 

Various ideas about not wanting to live like that, about natural death, about quality of life, about suffering, and the usual generally expressed.

Random thoughts pulled from another discussion, a mess of stream of consciousness, really, not a cohesive essay. Just thoughts:

It depends on the intervention and the situation.

Natural death to me does not mean allowing a child, or anybody, to starve to death or be dehydrated to death, these are in fact, particularly vicious forms of murder, so I would have those things whatever the delivery system. We know that people do die on their own even while receiving nutrition and water via tubes, so the tubes delivering nutrition and hydration do not prevent natural death. They merely prevent the torture of being starved and dehydrated.

Suffering?  It depends on what we mean.  Agony? Pride suffering because intimate needs such as toileting, bathing, etc cannot be taken care of without third party involvement? Discomfort?  Being too dependent?

I don’t think avoiding suffering for the sake of avoiding suffering is really biblical. We judge what is good by what we like, not by God’s standards. While I would not choose suffering merely for the sake of suffering, choosing death over extreme inconvenience also doesn’t sit well with me. If you knew your child was going to die a horrid, excruciating, death, would you choose for him to avoid it and die peacefully in his sleep as a baby? That is not the choice God made.   Granted, we are not God.  But then, we are not God.

I have a child who cannot speak and her communication is around the level of a one year old and while she’s not paralyzed, she’s also not toilet trained and she doesn’t dress herself except with intense supervision and oversight and a bit of help and she does have a number of physical limitations. She’s 29. She is not suffering. I have had more people than I can count tell me how sorry they are for her, which makes me furious- they aren’t even looking at her when they think that. She does not need their pity, she doesn’t care about it. She’s not miserable. She likes her life just fine- they are imposing their thoughts and feelings onto her.

I would hate to be a two year old again knowing what I know now, but two year olds do not know what we know now, so they can handle it. She does not know what you know, she doesn’t miss what she never had, she doesn’t understand your value system, she doesn’t share it. She just is. She laughs, she hugs, she has things she likes and doesn’t like, anybody feeling sorry for her doesn’t know what they are talking about.

I have also heard arguments about ‘I wouldn’t want to live like that.” I hate those arguments. I am sorry, but they are very personal to me. This is my daughter. Of course nobody *wants* to or would choose to be in her situation, but she did not choose it, either, and she is not you. She seems quite happy with her life to me. If you were in her situation, you would not be thinking like you are now.
She is not miserable because she does not know what you know- and that is not a horrible thing.

And when people say I wouldn’t want to live like that, they do not know it, but they are revealing how very demeaning and disparaging they really feel in their heart of hearts about people like her and about her value as a human being. To my daughter and her mother, they are saying, really, “If I had to live like you, I’d rather kill myself.” And that’s a very ugly thing to say and not at all something with the mind and heart of Christ. I know they haven’t thought it through and don’t realize it and would be horrified if they recognized it. But that doesn’t change the fact that it shows the low value even Christians place on the seriously disabled. Christ had the humility to become a human being and leave Heaven and become one of us- we are so far beneath Him we can’t even imagine. And yet we do not have the humility to even imagine being willing to live our lives as a fellow human being, but with extreme disabilities.  He became one of us so He could die for us, and meanwhile we tell people all the time, without even blinking or flinching, that we would rather die before we would become one of them.

I would suggest rethinking our opinion of suffering in general. Are we talking extreme pain and unbearable physical agony, or major inconvenience and embarrassment, and do we really have a deeply biblical understanding of the word suffering and what it means and all it entails?

And I’d like to share these words from a man who is nearly entirely paralyzed (he can move his head some), in a wheelchair, dependent on others for almost everything, and he has been from birth. Christopher Nolan’s disabilities are so severe he communicates only via keyboard.

You need to really focus on what he says, because he’s Irish, poetic, and he recreates language in a beautifully poetic way, but it requires the reader to really pay attention. He wrote this in the late seventies or early eighties, so a couple of the words are not what we would use in the States and definitely not today. Also in the book from which I am quoting, he always refers to himself in the third person:

“A brain-damaged baby cannot ponder why a mother cannot communicate with it, and unless it gains parental love and stimulation it stymies, and thus retardation fulsomely establishes its soul-destroying seabed. Conscious of the breathtaking sacrifice involved in what his family did for him, yet he detected where destiny beckoned. The future for babies like him never looked more promising, but now society frowned upon giving spastic babies a right to life. Now they threatened to abort babies like him, to detect in advance their handicapped state, to burrow through the womb and label them for death, to baffle their mothers with fear for their coming, and yet, the spastic baby would ever be the soul which would never kill, maim, creed falsehood or hate brotherhood. Why then does society fear the crippled child…and why does it hail the able-bodied child and crow over what may in time become a potential executioner?”

Elsewhere in his writings young Christopher marvels at the age he lives in, recognizing that a hundred years ago a child like him would have been trapped in himself, unable to communicate beyond a rudimentary level with even the most doting of parents. He would scarcely have survived his childhood, and he certainly wouldn’t have published a book, spent any time in the public eye, or been given national awards. The western cultural attitude towards disability is deeply, seriously disturbing, especially given the technological advances that give the disabled lives they didn’t even survive to dream about in previous centuries.

 

More than abortion, I think the broader take away point from Nolan’s remarks is that in this day and era children with all kinds of disabilities have a far better quality of life and far better options and more hope for the future than any other era- and yet, we remain anxious to let them die, whether through abortion, or through withholding treatment after they are born (I know of two stories of disabled children allowed to starve to death by witholding a simple and common surgery. )

We are so good at self-deception (Jeremiah knew the heart is deceitful above all things, and we are not at all immune to that).  We mask the real motives even to ourselves, by certain phrasing.  I think it feels better to talk about ‘intervening’ to prolong life as an artificial, unnecessary thing, but the reality we take it for granted with ‘normal’ people is that we intervene to prolong life. We take steps to prolong our own lives all day and every day. We eat, drink, wear seatbelts, take medicine when we need, wear protective gear for riding bikes or horse riding, protect ourselves and our children from things we are allergic to, carry epipens if we have peanut allergies, and so on. These are interventions and their purpose is to prolong life. Antibiotics artificially prolong life. Asthma medicine and breathing treatments and insulin also do the same. We don’t even call those things interventions- because we use them all the time. But they are, and so we are fine with interventions, until we are discussing somebody who is disabled. So it’s not really just about intervening.

It’s not invalid to discuss how far do we go with those interventions and what kinds of interventions we mean. Obviously, some are far more drastic than others.   And what kind of time frame are we discussing would be a natural influence on our decisions: would it prolong a life a day, a week, a month, a year, two years, five years? And while a day seems unnecessary, not to prolong a life with an intervention that might give an extra five years seems awfully like murder to me, if the basis for saying now is simply that the child is disabled.
If we would go X far for a child without disabilities, it bothers me that we even have to ask when we are discussing a child with disabilities. And our standards, again, have less to do with conclusions reached from studying what the Bible says about suffering, and more to do with personal preferences and comforts and nebulous things like ‘well, she’d be better off in Heaven.” Yes, undeniable. And so would you, so would I, and so would our Cherub. And while the difference between my Cherub and myself here on earth seems a vast chasm; compared to Heaven’s standards, it’s just not so much as a sliver. So,  if simply the fact that one would be better off in Heaven settles the issue, we should all be dead already.

There are other questions I rarely see being asked at all, and they matter more: Has this human being made in the image of God truly *nothing* to do and *nothing* to give here on earth? Is there truly *no* hope of any sort for the future, is this life without value here on earth? Is this human image-bearer of God really at the last end of the journey and without anything of value to offer or do here on earth? Has this person completed the work God designed for them to complete?

Those are the kinds of questions that we should be asking.

Christopher Nolan, quoted above has no hope of ever leaving his wheelchair, which he cannot get into or out of without help- pretty much complete help. He doesn’t speak. He communicated, at the time he wrote the book, with a stick strapped to his head and he poked the keys, with help from his mother balancing his shaking head for him. (That said, he also did not require any extraordinary intervention just to keep him breathing and his organs functioning.) His mind was untouched, and he could type with a stick on his head and he created something of incredible beauty and richness. But most people think somebody like him would be better off dead and would deny him life saving intervention because he is trapped in a wheelchair, essentially paralyzed and unable to communicate without technological assistance.

Do we phrase our questions so that our focus is our child as a person, an image bearer,  glorifying God, or is the real frame work for our decision our preferences and what we are comfortable with?

Updated: related: “The death of a terminally ill seventeen-year-old boy made headlines recently, as Belgium’s first case of child euthanasia. I don’t understand the sudden fuss. The Netherlands has long allowed minors to request and receive euthanasia: Dutch children down to age sixteen can receive euthanasia without their parents’ consent, and children can be killed by doctors with parental consent starting at age twelve.

Perhaps Belgium’s euthanasia law has received this recent media attention because it has no age limits, instead requiring that a minor demonstrate a capacity to make autonomous decisions before receiving assisted suicide.

Think about this: Children who can’t enter into legal contracts, get tattooed, or be licensed to drive a car may request—and receive—death.

The healthcare system doesn’t dole out death only to teens and preteens. In the Netherlands, doctors commit infanticide against babies born with serious disabilities or terminal illnesses with impunity, even though the practice remains technically illegal. Indeed, doctors at the Groningen University Medical Center felt so safe committing infanticide that they published the Groningen Protocol, a bureaucratic checklist to help determine whether a baby is killable.”

tombstone

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6 Comments

  1. Cindy
    Posted October 15, 2016 at 8:55 am | Permalink

    The quality of life argument is almost always used by people who are thinking more of the caregiver’s quality of life than the disabled person. They wouldn’t want to have to take care of someone like that. They’d never admit that. It would sound awful, so they couch it in concern for the disabled person’s difficulties. That’s the feeling I get from most people. Then there are people who just say what they heard the last person say because they don’t think about things very hard. That’s actually a lot of people. Maybe I’ll carry a copy of this post in my purse, just in case I met some people who need their thinking done for them.

  2. Cindy
    Posted October 15, 2016 at 8:58 am | Permalink

    Come to think of it, they do the same thing arguing against natural families. Any number of children past two or three, and you start hearing about how awful it is for the child to have to live in such a family and compete for parental time and resources, poor thing. Nah. They’re just thinking about how much they’d hate to have to take care of that many.

  3. Lisa Beth W.
    Posted October 15, 2016 at 9:46 pm | Permalink

    I think you’ve hit the nail on the head there, Cindy.

  4. Katie
    Posted October 16, 2016 at 1:10 pm | Permalink

    What would you say is the hardest part for you as the parents of the Cherub?

    We have a relative who’s been a quadriplegic since 1985- his daughter doesn’t remember before he was in a wheelchair. He knows both ends of disability as well as anyone could (and people keep finding new breakthroughs by treating him). He’s at least 10x more upbeat a person than I am and I’m just a run of the mill person. so, yeah…when I think of steve and “quality of life” right now my first thought is, what will his daughter do to include him where others would have a father-daughter dance at the wedding reception?

    • Headmistress
      Posted October 16, 2016 at 4:44 pm | Permalink

      As parents of the Cherub, the hardest part for me is that she cannot communicate or respond to pain normally, and it’s very, very difficult when she is sick or injured.

  5. Posted October 16, 2016 at 2:51 pm | Permalink

    My daughter died last year. She had multiple, severe disabilities and massively complex medical needs.

    In the end, she starved to death. And it was, genuinely, the kindest thing.

    I fought for her, pushed for her, for many years. For a decade or so, her massive disabilities were irrelevant. She had a fantastic quality of life, loved to laugh and take small tastes of coffee, and kick small children who thought her wheelchair footplate would make a good play table.

    She had extremely good understanding and a strong faith.

    Then, when she was 11, she got sicker. Life wasn’t fun for any more. Her spine twisted further (she was too fragile for surgery to straighten it), causing increasing problems with breathing, digestion, and so on.

    For her last two years, she was mostly in bed. Loved, cared for, part of our family, with a team of nurses around her as her medical issues grew.

    Six months before she died age 13, she started having problems tolerating feeding. She’s had a tube since she was 2, she’d stopped tolerating formula when she was 9, and so we’d been feeding her blended food through her tube since then.

    Feeding her caused immense pain some days. We switched to electrolyte fluids to give her gut a rest, then tried other formula and very bland blends. And some days we could feed her, and some days we couldn’t.

    She had a strong faith. She always chose to come to church. We found a horizontal wheelchair so she could attend even when she couldn’t sit up any more. With a massive tray for ventilator, oxygen, suction, and the morphine and other emergency medications she needed.

    We went on holiday and on days out, taking a bed with us, letting her lead us in what she could and could not manage.

    We were supposed to go and watch her very best friend of all be baptised at the other end of the county. She loves her friend. He had a different mix of disabilities; together they would lie side by side listening to worship music; he would strike her hair or pull her glasses off, and she would stick out her tongue to lick him. They loved each other dearly, and his mother and I worked hard to bridge the distance between us as often as we could.

    One week before his baptism, she stopped tolerating any food at all. Anything with any kind of calorific content going into her stomach caused her utter agony. And this time, it didn’t reset after a day or so. And she told us she was tired, and she didn’t want to keep trying with food any more. She couldn’t talk, but she could indicate yes and no with her tongue. She also didn’t want to make the long trip up to see her best friend’s special day.

    We were admitted to our children’s hospice. Her last big smile and vocalisation was when the paramedics came. I lifted her onto the stretcher and told her where she was going. And she shouted a big aaaaa (her yes) with a big smile.

    We put her to bed in the hospice. Her bed, her sheets, my arms, her music. We live near our hospice; she’d been there a hundred times before for symptom control and respite. But we all knew this stay was different.

    After a week, she stopped tolerating the electrolytes too as her gut continued to fail. Her seizures initially improved as she went into starvationX but eventually we had to control them and her pain with subcutaneous drips, as her stomach stopped coping with even just meds.

    It still took a month. A month where she was very very peaceful, calm, serene (once we got the pain under control). As she got too weak to move her tongue, she be an to blink to communicate instead.

    I’m not advocating starving children to death simply because they are disabled. And I’m not for a minute suggesting children with disabilities should be denied medical treatment (or education, or life opportunities, or anything), simply because they are disabled. But in my daughter’s case, and in a large number of patients with very complex medical needs, there can come a time when the stomach, bowel, digestive system packs up altogether. And we do have to listen to what the body is saying at that point. and for Imi, stopping feeding really was the most appropriate treatment.

    It’s been very controversial here. Hospitals have been accused of withholding fluids from dying patients. Maybe sometimes that has happened. I don’t know, I wasn’t there. But what I have seen, not just with my daughter, is that once an individual is moving on that path towards death, there very often comes a point when feeding is a burden to them, not a support.

    I think it’s important that’s recognised. Because otherwise we end up in situations where parents must go to court, in order to bed for the right to stop torturing their child by forcing fluids into them, when those fluids are causing an unbearable amount of pain.

    Important to separate out the two different things I think – deliverately withholding food and fluids in order to hasten death – not good. But recognising the point when food and drink have become anbearable burden, and supporting an individual through that – compassionate and loving.

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