Friday, February 10, 2012

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.


  1. Off topic. I shudda known--we both INTPs.

    I was in denial for a solid month. It finally hit me. I opted for chemo tho is was not mandated with my stage. I opted for it to crush whatever cancer might remain. I had not idea what the reprecussions would be.

    I listened while a friend's brother died a horrible death from brain cancer. He opted for radiation, tho he had not much chance of making it.

    I decided then that I hoped that I if faced with the same choice would opt for hospice.

    I hate, hate, hate, the warfare language out there about cancer. It's not a battle. It's a process. Whether we live or die immediately is not a matter of how hard we struggle or even the decisions we make.

    I've had a member of the congregation of the church I served decide she was ready to die. Her adult children had a fit. They wanted her to fight. I don't think it was her mortality that they fought against, but their own.

    In a Buddhist monastery in Bhutan, I saw a mandala centered on death. The guide explained that they try to meditate every day on death because they don't want to face death saying "I never lived." And so, I try (and fail) to live mindfully every day. It is what impels my travel--there is so much I want to do before I die.

    But really die, I'm not sure I want to not exist any more. I'm not afraid, because I believe that heaven exists in this life, not another, as does hell.

    I love life. I hope when the time comes I can embrace death as fully as I embrace life. Tho I'll probably pull another swim in De Nile.

    Love to you

  2. Robin, I'm INTJ and also very much want to know. I will be furious if my doctors tell my children and/or friends and fail to tell me everything. I do want to know details and probabilities.

    Because my mother developed Alzheimer's after bypass surgery, I had already decided I'd never do it. When I was told that's what I needed in 2009, I felt a ... hmm, looking for the right word ... thrill? ... but not a "chill" ... run up my spine. I thought, "That's it. My time is up." It's a long story for another time, but one of my daughters and my best friend changed my mind, and I had quadruple bypass surgery on February 19, 2009. I have no desire to prolong my life to simply survive. I have given my son power of attorney to say when to quit, hoping he can stand against his sisters, if necessary.

    I'm not sure how to advise you about telling others details they don't want to know. What I learned from my surgery was how wonderful friends are:

    If you want a real conversation, email me and I'll give you my phone number, if you want it: emerging DOT paradigm AT yahoo DOT com

  3. In younger years, I preferred to live in denial. And certainly death was not discussed as I was growing up even though my father died when I was young.

    Now I want to know. And I want to ask questions. Then the discernment begins.

    I am mindful of a part of the Rule of St. Benedict - To keep death daily before one's eyes. It's easy for me to live as if I have all the time in the world. The challenge is to live as if I do not.

    Thanks for raising the question.

  4. I'm not sure at all that I'd want to know ALL that western medicine had to say about my condition. I think there are so many things western medicine has gotten wrong...including its phobia about death. Death is part of the cycle of life, as surely as birth is. Am I afraid of dying? HELL yes. But part of the reason for that is that human beings have so adeptly obliterated any visible connection to the Almighty, the eternal, that we have no certainty about what happens at the end of our earthly existence. We have all sorts of theories, but no facts. And it scares the crap out of us.

    I, for one, prefer to focus upon what we don't know, and believe that our intrinsic connection to the Universal Soul takes us to the next level--whatever that may be--when our spirits leave our bodies.

    Modern medicine--indeed, modern society--seems to have forgotten that, at some point, each of us is going to be required to give up the earthly bodies we inhabit. The grace of doing so has been obliterated by the war/fight/victory mentality. Which is not to say that, if I should come down with some life-threatening illness, I would not accept any medical options that offered me cure or relief. But we should not extend life purely for the sake of extending life; that, I think, misses the mark completely.

  5. Ahh, caught up with you again. Going through a lot in my own little world, things that can't be blogged about, and therefore reluctantly taking long absences from your beautiful, clear, inspiring blog. So glad to read that you are marching ahead into the world of publishing. You will have a much wider readership than you dare to imagine right now. You say things the rest of us are thinking, but for which we lack the words or the freedom to express. So I say, "GO Robin, GO!" I am so looking forward to reading YOUR insightful, incisive, transparent and profound book.

    As for how much I want to know? All of it. I am not hanging on to life. I am here because there is work to be done. Death is no friend. Separation is painful beyond words. But it is the door to a new and better world...and especially now that I have someone waiting for me there.

  6. Thank you all for your wonderful comments. I am miserably sick in the most mundane of ways, but Maybe I'll have something lucid to say later.

  7. I also would want to know so that I could make some decisions myself with the wise counsel of a couple of close friends and family. Not knowing would remove that opportunity to make choices which would contribute to the feeling of being totally out of control. I have never forgotten what my well-intentioned parents did when I was at university and my grandmother passed away. My parents called me and let me know after the funeral because they didn't want to disturb me during exams. I know it was different those many years ago as travel wasn't as easy and I was quite far away from home but I felt as though I had been robbed of my freedom to choose my own course of action.

    When you are listening to others, just rely on the Holy Spirit to let you know what to say. I know that sounds like a cop-out but it does work when we are uncertain about what to say. Most people really just want someone to listen with compassion.

    Sorry to hear that you are feeling ill. You are in my prayers.