For some terminally ill people âlive as long as possible no matter the costâ isnât the goal or even desirable, and I think maybe itâs time we have a frank discussion about compassion, life expectancy, and life fulfillment through that lens.
There is no cure for what I have.
I am not seeking aggressive life extension care. I do small, minimally invasive treatments and pain management that help with comfort and function, because I want to live my life, not spend what time I have left chasing a few more miserable months at the expense of everything that makes life feel like mine.
And I think there is a need to talk about that openly, without immediately moralizing it.
A lot of conversations around terminal illness assume that the highest possible good is survival at any cost.
More procedures. More appointments. More pain. More side effects. More time in medical spaces. More bodily autonomy surrendered. All framed as bravery or strength or fighting.
But what gets left out of that framing is the actual lived experience of the person in the body.
For some of us, extending the duration of life means shrinking it.
It means fewer good days, not more. being too exhausted or sick to do the things that matter. It means living entirely inside of treatment, side effects, and recovery cycles. It means trading the here and now, happiness, creativity, relationships, and autonomy for time that may not even feel like living.
for some of us, that trade is not worth it.
That does not mean we have given up.
It does not mean we are suicidal.
It does not mean we do not value life. It means we value our life as a whole, even if maybe not just its duration.
Quality matters. Fulfillment matters. Agency matters.
There is a deep cultural discomfort with accepting that someone can be at peace with not pursuing every possible extension.
People hear it as hopelessness because they have been taught that the only acceptable relationship one can have to death in any capacity is denial and resistance. Especially in white western spaces.
But acceptance is not the same thing as resignation.
I refuse to choose misery so I can say I lived longer. I am choosing to live in a way that feels honest, and aligned with what I care about, even if that means my life is shorter than it could theoretically be on paper.
Compassion is not forcing someone to endure endless interventions because you are afraid of loss.
Compassion is listening when someone tells you what they want their life to look like.
Life expectancy is a number and even if it theoretically were more than a number it would not even be one set in stone, tomorrow some perfectly healthy person is going to die in an accident. This is a fact.
Life fulfillment is an experience.
I want, no, I need people to stop acting like choosing fulfillment over biggest life extension is a moral failure, or even a tragedy, or something that needs to be argued out of someone.
Sometimes the most loving thing is not asking
âhow do we keep you here longer, no matter the costâ
âhow do you want to spend the time you have?â
That answer is not the same for everyone.
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