Therapy or Cruelty: Where's the Border?

Last night I endured an hour-long TV documentary that broke my heart. It affected me on a number of levels and I can’t get rid of the feelings of profound sadness and anger. Maybe it will help if I give voice to the thoughts.

The documentary was about Chloë Jancata, a 13-year-old girl in Perth, Western Australia, who for the second time in her life had to do battle with an attack of acute lymphatic leukemia. First diagnosed when she was 10 years old, she had undergone treatment and the disease had gone into remission. Three years later she had relapsed badly.

Because the usual chemotherapy no longer worked, Chloe was selected - and thereby became the first person in the world - to undergo a radically new experimental treatment in a children’s hospital in Perth. The treatment was administered by a team of cancer specialists from the US, and it was a merciless and exhausting regime of intense chemotherapy. Quite literally, it was an attempt involving life and death.

In the meantime, medical specialists had discovered a genetic means to determine which children had the greatest chance of a relapse after an initial bout of leukemia. For the treatment of such cases in the future, this was a significant breakthrough, but it was of no benefit to Chloë. Instead, she needed to put up a long and excruciatingly painful fight. Her mother and the doctors that surrounded the child must have asked themselves whether the long months of suffering served any real purpose.

Tracy Zdencanovic, Chloë’s mother, stated: “It seems to me they’re bringing her as close to death as possible without actually killing her.”

The only chance Chloë had for a long-lasting recovery was a transplantation of bone marrow and umbilical cord blood. But these treatments would put her life at acute risk. Her own bone marrow needed to be totally destroyed to the point where she had absolutely no resistance. And then there was no way back. Without her own immune system, Chloe was in severe danger of lethal infections. She was completely dependent upon the knowledge of the oncologists, who were keeping her alive - though just barely - with a terrifying cocktail of medications that were wreaking havoc of their own.

Chloë’s heart-wrenching story clearly demonstrated the raw reality regarding what science can do against a disease like leukemia and what they can’t do. It was devastatingly clear that for the development and implementation of a new method of treatment a terrible price needed to be paid.

To cut this long story short: After enduring months of needles, chemotherapy, nausea, agonizing pain, and whole-body radiation to destroy her own blood cells to make way for the new cells that would be transplanted into her, the emaciated, weak, pale slip of a girl with the heart of a warrior finally gave up the battle.

That’s the story.

The three things that bother me are these:

1. The documentary ended abruptly, with only two short sentences stating that Chloe had died. The program then quickly changed to another. At the very least, one might have expected a sentence in the credits acknowledging and thanking the girl for having volunteered to serve as a human laboratory rat and to feature in a public documentary of an ordeal that ended in her death.

2. Several times the desperately ill – and clearly frightened - child asked her mother, a doctor and one of the nurses - in a voice that was never strong enough to be above a whisper - "Am I going to die?" Each time she was told “No”. The doctor’s reply was, “We’re not going to let that happen.” I understand how difficult a question that must be, and it makes me wonder why, in cases like Chloe’s, no appropriately trained death counselor was available to help her face and come to terms with what was clearly a possibility. I hope that in the end she didn’t feel betrayed by everyone.

3. The third issue has to do with the prolonging of life when its quality is so violently compromised. At what point do excruciatingly painful and uncharted so-called therapeutic methods cross the border into blatant cruelty that, under other circumstances, could be punishable by law?

Alright. I’ve got that off my chest. But it’ll be a lot longer before I lose the image of Chloë’s face and her lovely eyes dark with pain and desperate with trust.