“The quality, not the longevity, of one’s life is what is important.” ~Martin Luther King, Jr.
Warning, Single Dad is going crazy again. Just to let you know.
Imagine you are driving down the street, maybe a highway or something. Some kid going in the other direction is doing what kids do, text messaging and driving. Next thing you know, you are in an intensive care unit after his car careens into yours.
You find yourself a month later in a wheelchair. You can’t communicate at all. There is some low-level pain, from muscles and who knows what, that is constant. You now have a g-tube for feeding. Nurse Ratchet gives you your meds, when she remembers. Schlep, formally the village idiot, is your personal care attendant. It is Schlep’s job to change your diaper as well as push you around.
Got it? Got the picture, it really is simple? So, here’s the question … what is your quality of life?
Again, what is YOUR quality of life now, in a wheelchair, no communication, g-tube, continual background pain, diapers, etc.?
Let’s look at this test, it is not mine, I will explain after … the words in italics are my scoring for that item. We are taking this test with the victim of that car accident, you, in mind.
Each item is scaled 0 – 10, where best quality of life for that item is 10:
- HURT: Adequate pain control (including breathing ability). If you always have background pain, tight hamstrings, migraines, anything, then can control be called adequate? You cannot communicate, no one knows. I give this one a 2.
- HUNGER: Are you eating enough? Do you require hand-feeding or a feeding tube? This gets a 0, you have a g-tube.
- HYDRATION: Are you hydrated? Do you need to be forced to drink? Again, on a tube, you cannot drink on your own or even hint you are thirsty. That’s a 1.
- HYGIENE: Do you need someone to clean you, especially after elimination? Duh, yes. 0.
- HAPPINESS: Do you express joy/interest? Respond to the environment? Show signs of boredom / loneliness / anxiety / fear? Are you involved in family activities? No, No, No, No, barely. 1.
- MOBILITY: Can you get up without assistance? Do you have seizures / stumbling? Super big 0.
- MORE GOOD THAN BAD: When bad days start to outnumber good days, the quality of life becomes compromised and euthanasia needs to be considered. Pick a number.
A total of 35 points or more is considered acceptable for a quality of life score.
The example is based on one of us after a horrible accident. Pearlsky does not have a g-tube and is not the example, so don’t yell at me, yet.
So, what is that test? It is the test used by the American Veterinary Medical Association to determine if a pet should be euthanized.
Someone in that position, if they were a dog, would be euthanized. Wow. Bow-Wow.
But what is their quality of life? What is “quality of life” and how is it defined? Does quality of life depend on what you know? Is your quality of life in the above scenario crap because you had a better life before the accident? What about our kids? What is their quality of life and how is it defined? I am not comparing anyone to a pet, there is no comparison, that would be absurd. But I am trying to understand the term “quality of life.”
I have said many times, and on this blog, that Pearlsky’s quality of life, from her perspective, is good. How do I know? I don’t. I hope, I pray, and I do everything, absolutely everything, I am capable of to make that true.
But how is it so? Her quality of life has to be shit. Let’s face it. She can’t communicate and I know with all my heart, she knows that. She is stuck in a chair that is barely acceptable. She knows that. She is eighteen and needs someone to wipe her tush. To feed her. To move her. To do anything. She knows that. She has seizures. She sees others doing things she can’t. She knows she is different.
Doesn’t that make for a sucky quality of life?
If she took that test on quality of life, and needs to score a 35 or better, well hell, I should just shoot her now, no? Make ANY test for quality of life, and Pearlsky gets smothered with a pillow.
We saw all these fancy ass doctors yesterday. Basically we were given three choices, do nothing, do something, or do something really horrendously big.
“It all depends on her quality of life” was what Chief Big Shot Doctor said.
“The quality of life is more important than life itself.” ~Alexis Carrel (1873 – 1944) French surgeon, biologist and eugenicist – awarded Nobel Prize in Physiology or Medicine, 1912.
“It all depends on her quality of life.”
One’s quality of life can only be measured by oneself. It is based on knowledge and experience. And said quality of life perception can change. I would guess that a bi-polar person may very well have exactly the same life over the course of a month, but at one point think it is a very low quality, and at another time, think it is a high quality. Someone looking at that may say that the person has a low quality of life, but that is projection.
Only Pearlsky knows Pearlsky’s quality of life. Only Pearlsky knows if she wants to live or die. Only Pearlsky can know if she wants nothing, minor intervention, or major intervention. She is 18, who am I to decide on trade offs for her quality of life? Yeah, I know the answer to that.
“It all depends on her quality of life.”
First, I would suggest that King’s comment above might be more about how one lives one’s life, when her refers to “quality”. Second, might it be fair to say that there are two “perspectives” when one talks about quality of life as you are…a subjective and an objective one? A child forced into prostitution has a poor quality of life. An individual imprisoned and tortured has a poor quality of life. These are “outside” influences that can be changed via some sort of intervention. Then, there is the subjective perspective, as you mention, which is not really possible to ascertain fully in a non-verbal individual. So…you can create, in an objective sense, a good quality of life for your child, and, obviously, you do. She is clean, fed, stimulated, loved, etc, etc. How she perceives her life, in the end, then, you will never really know. Right. However, “Her quality of life has to be shit.” is, as you say, a projection. Though you claim she understands that she is different from others, does she then proceed to judge that difference to be bad? That, you don’t know. It is commonly assumed by able bodied people that all disabled people want to be “normal” and this has been proven to be a false assumption. Most disabled people would likely not give a damn about their disabilities if everyone around them got over it. Judgment of a thing is a learned response. Small children, I have learned, only come to judge something good or bad, based on what they are taught, either directly or indirectly, by the adults around them. This is why you can teach a child to believe that Jews, Blacks and Catholics are evil, stupid, anti-Christ, whatever. So, how a disabled child with limited cognitive ability perceives his or her life may depend entirely on how much s/he understands and how much prejudice s/he has acquired from the people around her/him. In any case, I believe that providing the best possible “surroundings” to a child is the most important element in identifying quality of life…but that’s an opinion.
The hugeness of this post, or its impact on you as you stand at another one of life’s forks in the road, is not lost on me. I don’t know how you do what you do.
That being said, I will agree that you are struggling with a psychological contradiction within yourself. On the one hand you say ‘Her quality of life has to be shit. Let’s face it.‘ and then on the other you say ‘Only Pearlsky knows Pearlsky’s quality of life.‘
Now I think this is you thinking out loud. You are asking yourself these questions, wondering which is to be considered true (?), sort of a peek into the inner workings of your head ala Dr. Bishop on Fringe or something.
Thanks for the peek though…it’s as fascinating as it is scary and gut-wrenching. Has this brought you any closer to a possible reveal of the curve ball you’ve been hinting at for so long?
No wonder you were dreading the appointments, knowing these existential questions would be brought to the fore yet again. They are tremendously complex. Even with the best quality surroundings, as Claire says—-and we all know those could always be infinitely better, with luck and unlimited resources. And still….
As people like me are trained want to do, we always reference where we heard or read something.
I attended a seminar on ethics at a medical school once. The speaker was effective in voicing the responsibilities of end-of-life care including hospice and long term care. I actually asked the question, with reference to one of his statements, of how was a parent to know the wishes of a child unable to communicate. He responded that it is the responsibility of the parents decide for the child.
That’s it. You have to decide, SD. No two ways about it. Twist yourself into knots over QoL definitions and scores, but you decide what treatment she gets. The fancy A doctors just threw you a bone to chew on until you decide. Had the physician NOT said those 3 words, what would you be asking yourself?
What I would think the issue is, what these doctors should be weighing, is whether the quality of life after a medical intervention would be better than before. There are probably models out there that can calculate the proabilities of whether the outcome would be a better quality of life, weighing in the risks and traumas of the procedures. I would not be interested in what the doctors’ opinions are as to what the quality of life is right now, as they are opinions only. The argument that someone’s life is such crap right now and will still be crap there after does not sit with me at all. That’s an opinion. It’s the calculus of the situation that should be taken into account, not an assessment of the set points.
What questionnaires like that miss is that quality of life is not defined by functional measures. Degree of pain and inability to communicate are the only ones that are at all relevant in that list, and they’re not the biggest determinants of quality of life. As a mildly disabled person who has experienced both high and low quality of life without any change in my underlying disability, here’s what I think quality of life is:
* feeling joy on a regular basis
* being free of sadness or anxiety for a significant portion of the time
* having people in your life who will fight for you if you need it, and being aware of this
* having power to make choices about everyday things, to have your protests listened to, etc (this is where communication comes in)
* seldom or never feeling severely depressed (even for a short time)
When I was a preschool-aged child being sexually abused, and when I was a school-aged ‘weird kid’ getting bullied by teachers and classmates, my quality of life was low. Now that I’m an autistic college student learning a subject that fascinates me and connecting with people who accept & like me for who I am, my quality of life is high. And I’m still just as autistic as I always was.