Euthanasia for those without a choice

NEXT week my daughter has her birthday. She turns 33. When I was the same age, I had a qualification, a spouse and three children.

Such was life.

For my daughter, I hoped for a different path; to choose her life independently, free from the dictates of society. This path seemed like a strong possibility from an early age. Determined, powerful, and excited about everything; that's how she was.

Until the age of seven, when a virus entered her brain via the auditory canal. The chances that she would live were not good, the medics tried to tell us. But she did, because an inner strength that surpassed all understanding made her dance out of the hospital three weeks later as if it had been a picnic.

Unfortunately, it was of short duration. The virus has wreaked havoc. Uncontrolled epilepsy was the result. Combinations of medications only partly suppress seizures.

The decline was slow but constant. The years were marked by saying goodbye to her personality, cheerful mind, communication, language abilities and overall cognitive skills. She cannot think any more.

Grief my companion

The loss of my child was untenable at times. Grief became my companion. My strong husband became more and more stooped, as if grief had entered his body. The boys tried to compensate with accomplishments.

At night, when sounds from the room next door wake me and I pick her up off the floor after a seizure has ripped her out of bed, my chest aches for the loss of potential. After a series of seizures, she sleeps for five days straight. Then one morning we are awakened by sounds from the kitchen where she is washing dishes. Her body is strong but her brain continues to shrink.

I developed a fear of blood after all her head wounds. Once she fell with her head against a chute and a piece of flesh the size of a palm had to be reattached during emergency surgery.

At first, she wanted to know why she was sick. In later years, she complained that her life wasn't good. But these days there is no awareness. She no longer knows what she's missing.

We chose to keep her part of the family and she became a resident of an institution for the seriously mentally handicapped only two years ago. She comes home often. She still recognises us but can no longer communicate. She makes noises, as if to speak. My 14-month-old grandson understands more than she does.

At the age of 16, she went on a hunger strike for three days so she could die. She lay on the bed awaiting her death. We talked her into eating again. We shouldn't have. Now she can no longer choose.

Vegetative state

My husband and I asked her neurologist and psychiatrist: How can a brain absorb this for so many years? How many times does one hear of someone dying from a single epileptic seizure? Our child has had hundreds. Where will it end? The neurologist looked at us with tender eyes and shook her head. The psychiatrist told us about a middle-aged man lying in a nearby hospital who, due to birth complications, had been in a vegetative state his whole life. I know of a woman whose 40-year-old daughter has no sensory activity after contracting meningitis just after birth. She is fed through a tube in her stomach and stays alive only because she can breathe on her own. Her mother is a single parent who will have to work until her child's death to pay for the care. There are many such cases.

What keeps our child alive? Medication. She will go into status epilepticus if it is stopped. Then she will die.

Four years ago, she turned violent due to complications with her medication. She attacked me and shattered everything around her. My husband and I felt like we were at war. In a desperate moment, we decided to stop her medication. That night I lay holding her as the seizures, one directly after another, tossed her body back and forth. When she turned blue in the face, I knew I couldn't do it. I won't try to prolong her life but I can't end it by my own hands.

Euthanasia is the practice of intentionally ending a life to relieve pain and suffering. Sean Davison, who was convicted of murder in 2019 after helping three people die by euthanasia, says: “It's not the decision of a family, it's the decision of a person who is suffering and they should be entitled to die with dignity at their own time of choosing."

Choice

What about the people who can't choose?

I asked the gynaecologist if my daughter could have a hysterectomy. “Oh no, not at all. People's personal right to decision-making is paramount."

And the people who don't have the capacity to choose?

It seems to me we live in a time where it is assumed the playing field is level. Individual realities are ignored.

I'm not speaking on behalf of other people in similar circumstances. I can only say what I wish for: For a committee where I can go and make my case. With people listening to each individual case with understanding and compassion, making an informed decision and launching a plan of action. And asking the right questions. Even uncomfortable questions. Such as: Do you want your daughter to die to end her suffering, or to end yours?

I want to tell them that her eyes, which always shone when she saw her dad, are expressionless. That she doesn't even know her brother has a son. And that I can't die until she does because no one else knows her needs without her having to say a word.

Stop the prolonged dying, I want to ask. She has long ceased to be a resident of life. There is nothing to close or fix. Her soul is whole.

Let her go. Please.

* Juliana Coetzer wrote Bloedvreemd  and Die kind se naam is Anneke about her daughter.

♦ VWB ♦

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