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.
Click to enlarge
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.”