A member of an online support group for caregivers of a loved one with brain cancer once posted his thoughts on the benefits of clarity in statistics and prognosis. His partner had been diagnosed with glioblastoma multiforme stage IV, with an unmethylated MGMT promoter, and he had done the research, spoken candidly with the team, and fully understood the prognosis.
As painful as the ending of his partner’s life was to contemplate, he pointed out that, given the profound changes in mood and function since the diagnosis, a shorter lifespan meant so much more than just “loss.”
The loss was coming sooner or later, but in many ways, he reasoned, it had already arrived.
Treatment, with all of its life-impacting side effects and no guarantees of improved functioning might mean more time, but hospice care was what really offered the potential for less suffering. It wasn't just Hospice's focus on comfort care that lessened suffering, but the presumably shorter lifespan of patients in such care. Less time was, in some significant ways, a blessing for this person's partner, their children, and for himself.
He asked the group, “Is anyone else struggling with the quantity versus quality of life question? Because I sure am.”
Various members of the group joined the discussion, expressing the myriad of feelings and thoughts that a question like this raises. One woman wrote, “I have thoughts like this, that my husband is already gone. I’m taking care of a shell, an angry, mean, confused shell. This disease made him a monster. I actually wish for the end. I guess that makes me a monster, too.”
Another woman responded, “Cancer makes us all monsters.”
Ultimately, we came to the conclusion that no one was a monster, and that the wish for the end of suffering was never monstrous, even when the only foreseeable end to suffering was the ending of a life.
In the eyes of the caregivers in this particular support group, quality of life, however personally defined, trumps quantity. Especially when quantity is so unyieldingly defined by suffering.
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