How exhausting it must be; to know that others that love you and that you love worry about you as the serious illness progresses! There is nothing you can do. You have no agency except… perhaps to die. This is the sentiment that I hear,
“At times I just pray, if I die they will at least stop worrying about me.”
But will the loved ones stop worrying? Or will their grief and bereavement transform into longing, sadness and regret that perhaps they could have done more or something better.
In Goals That Ricochet, A Piece of My Mind essay recently published in JAMA, Rebecca N Hutchinson, recounts the story of the death of her mother from Multiple Myeloma. She was about to finish her Palliative Medicine Fellowship and have a child when she learned her mother’s treatments were no longer effective. Would she live to see the birth of her new grandchild? What would she suffer in trying to accomplish this goal, which may be more Rebecca’s goal then her mother’s. Even now Rebecca says,
“I still wrestle with how to make sense of the conjoining of my daughter’s birth and my mother’s death.”
While I have always admired the work of Karen Stienhauser and colleagues; I have always rankled at the title of one of their seminal articles, “In Search of a Good Death”. The content is insightful and I still recommend the article to students. Yet this title, Good Death, bothers me? Should good be used to modify death? There is certainly tragic, painful and unresolved death. In my work in palliative care I think we have made death less awful, less alone and tragic; but good? I don’t think so. Good is too high a bar, that puts unrealistic expectations on patients and families, and providers like Rebecca.
It will take all of us working together to help death be less awful.
Rebecca Hutchinson’s essay is here: Goals that Ricochet