Serious Illness: What Would You Want to Know?

Due to a series of encounters over the past few years, I've come to realize that my own thirst for knowledge (INTP-related, apparently) is not universally shared.

A few months ago, a local pastor asked me to fill in for him while he was away, and so one day I spent some time with a gentleman who was suffering from metastasized cancer.   He was alert and engaging, discussing the national political situation, his recent travels, and his doctor's suggestion that he consider hospice care.  His own preference was to continue with his chemotherapy.

"What does your doctor say about your prognosis at this point?" I asked him.  "What effect is continued chemo likely to produce?"

"I don't know," said the man.  He paused.  "That's not really a question you want to ask."

I sat quietly, thinking, "That's exactly the question I would ask."

The conversation reminded me of several that I had had with my dying stepmother a few years ago.   When her doctor told her that he was cancelling the remainder of her course of chemotherapy, that it was doing more harm than good, she refused his counsel and insisted on a treatment that afternoon.

My stepmother and father and I had many conversations over the short course of her illness, but never, to my recollection, did we have a candid discussion about her prognosis.  I made some attempts, but was rebuffed at every turn.

At the time, I blamed the doctor.  It seemed to me that at the beginning of their relationship, he had built up, or permitted to be built up, her expectations for survival  ~ despite her appearing in his life with three inoperable lung tumors and ten lesions in her brain ~ and that a few months later, his approach caught up with him:  he  had not provided the information and counseling necessary to support an end-of-course change in direction.

But now . . .  I wonder.  In retrospect, it seems that my stepmother was incapable of hearing the words that would have described the reality of her predicament.  And my father as well.  After she died, my father expressed tremendous resentment toward the doctor for not explaining what her treatment would entail, stating that if they had understood how sick the chemo would make her in exchange for a 1% chance at survival, they would have opted out.  But who knows, in the aftermath, who said what and who heard what?

That sort of conversation is not an immediate concern for me personally.  There is no reason for me to expect anything to come of my bout with breast cancer.

But if it were a concern for me, I'm 99.99% sure of what I would do.  I may not be much interested in plastic surgery, but I am very interested in disease progression and outcome.  I am most especially interested in life and death.

If I had metastasized cancer, you can bet that I would insist upon a lengthy conference with my doctor(s), and that I would emerge with a clear picture of all likely outcomes and what each would involve.  And then I would call hospice to arrange a similar meeting.

And if we were talking weeks, or even months, I would put aside everything else for the things I would like very much not to miss in this life.

And I would, I think, be intrigued by and curious about my final months here.  As someone said in a Christian Century article some years back, "Dying is not a medical process.  Dying is a spiritual process."

(And, you know, one of my children is dead.  There is very little left for me to fear.  Other than physical pain ~ I'm not a fan of that.)

My real concern now is not me, however.  My real concern is other people.  We live in such a death-phobic culture that even deeply religious people (and the man with whom I was meeting was a lifelong church leader) approach their own in a state of resistance and denial.

And I'm not at all sure of how to approach that.  

People often make remarks, in funeral homes and at gravesides, to the effect that "He waged such a valiant battle."  And if someone tells his doctor that he's finished, had enough, is headed for home and hospice, those friends of Job say, "Don't give up."  Over and over again in my hospital  chaplaincy did I witness the latter: adult children insisting that elderly parents in what were clearly the last days of their lives "not give up."

I tend look at these situations in a way diametrically opposed to that which our culture fosters.  To my way of thinking, a person who asks to be told what is likely to happen to her, and then insists upon the beach over the hospital, is one with great fortitude.

But I can't slice of gash of clarity into another person's carefully constructed portrait of himself.  I can't assume that, because my own thirst for knowledge is unquenchable, so is that of everyone else.  I have to realize that careful omissions of information that I would angrily refer to as "lies" are can be sources of comfort for others.

What to do, I wonder?  How to listen?

What would you want to know?

Image here.