What does it feel like to die from this?

I have been asked some version of that question a number of times. Quite obviously, it is as uncomfortable to ask as it is to answer. Medical oncologists (myself included) deal with some version of this on a weekly basis and for the most part, answer as honestly and sincerely as they can – but necessarily at a superficial level. “We will do everything we can to keep you comfortable.” “When that time comes, I will be there for you and your family.” “That is a question I think we should address with our palliative care team or hospice – would you like me to get them involved?”

Yet the reality is much more complicated and if there is one word for the experience, I would pick “sadness”. For all of us, there is both personal and corporate/family sadness. We don’t want to say goodbye, and neither do our friends and family. I want to share some thoughts about that in a minute, but first I can deal with the physical/medical experience of death, which is one aspect of answering the question.

Whether you are a religious person or not, you are immortal. The carbon, oxygen, hydrogen, nitrogen, phosphorus and other atoms that make “you” will never be changed, or if they are, it will be in some sort of nuclear reaction that changes them into another element and involves incredible energy. After all, as Carl Sagan liked to point out, we are all stardust – made (or created if you would rather), from the stuff that happens when stars collapse. That is the root meaning of “disaster”. Beyond that, I happen to think that the energy you have put back into our universe in the form of words spoken, deeds done, mountains climbed, and so forth are immortal as well. “For every action, there is an equal and opposite reaction” is a physical principle we all learned in grade school science class. Thus, the butterfly wing that flaps in the mountains of Mexico and results in a cyclone half way around the world is not completely inconceivable in my view. You, or YOU… have made a difference in the cosmos by being alive. You have utilized chemical bonds that hold matter or elements together into energy and imparted that into your surroundings. When black holes collapse, millions of years later, we detect gravitational energy waves. When you breathed, your breath had more energy than the air you took in as you exhaled. It was warmer, had more CO2 and less O2, and velocity that forced the air around it to move. With a sensitive enough detector, there might be a way to detect that in a million years as some femtochange in some aspect of the cosmos.

When all of this melts down, the function we call “life” ends. The physicochemical reactions going on in your heart muscle, liver, and brain stop. Your consciousness is gone, and with it, what we know as “you” are gone, which brings us to the metaphysical aspects of life and death. Describing the end of “life”, if we are honest, is far more than the cessation of physical and chemical reactions. If it were not so, I cannot imagine my feeling that “sadness” is what describes the experience best. Within our conscious experience of life, “love” is what we cherish most, in all of its meanings. My favorite author, Pat Conroy, died a few weeks ago, and in looking at some of his quotes, I was most deeply moved by this one: “I do not have any other way of saying it. I think it happens but once and only to the very young when it feels like your skin could ignite at the mere touch of another person. You get to love like that but once.”

Certainly that captures a universal experience of one kind of love. But of course, all kinds of love (eros, philia, agape, pragma, philautia) are part of a pretty mysterious collection of our existential experiences, and all end with our personal demise. The result is sadness. Promises of immortality, however comforting, cannot remove the sting of death. Were it not so, the famous two line verse from the bible, “Jesus wept” [John 11:35] at the death of his friend, would not be there to ponder 2000 years later.

Dying from cancer involves all of this. It is a journey. For some, it ends unexpectedly with a sudden chest pain and unconsciousness as the heart fibrillates and oxygen is no longer delivered to the brain. However, for most, it is a series of attempts to beat back the cancer with increasingly toxic and or ineffective treatments, ultimately resulting in an admission by both the patient and physician that focusing on comfort through medication and family/support is the better option. Both the patient and the family must cross the threshold of giving the patient “permission” to die, and face the sadness. What physically comes with this is variable, depending on what organs are involved – bone pain (reasonably easily treated, although with well-known side effects of opiate administration or radiation) is common with prostate cancer, as is fatigue (not so easily treated). What is untrue is that the PSA can predict any of this. I have had patients who went elk hunting and enjoyed themselves with a PSA of 6000, and others who crossed the bar when their PSA was less than 10. Too much focus on the PSA can ruin whatever time a patient has been given either by the genetics of his own disease or by the ministrations of modern medicine.

But this sequence, to be traveled in one way or another by all of us, can also be beautiful in its own way. Life has meaning. Death has meaning beyond sadness. Immortality, in the way I have thought of it, is undeniable. Religion can (for some) be incredibly comforting as one faces the reality of death itself. Rather than try to go further in this (hopefully honest, yet inexorably sad) essay on the topic, I would strongly urge you to read a recently published book, “When Breath Becomes Air”, that I think captures a death from cancer with far more sensitivity and meaning than I am able to impart. Paul Kalanithi’s death from lung cancer in his late 30’s one year ago was a journey he captured as perhaps only a philosopher/neurosurgeon/husband/father and brilliant writer could accomplish. It was his gift to all of us, and by referring you to his writing, I hope I have extended that gift to you on a topic that we too often avoid.

17 Comments

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17 responses to “What does it feel like to die from this?

  1. Peter Kunasz

    Excellent commentary. Thank you.

  2. Cindy Landsberg

    Beautiful essay. For more emphasis on the practical aspects I would also recommend the book How We Die by Sherwin Nuland MD.

  3. Al Stahmer

    This was beautifully written. I could feel your compassion. A wonderful article. H.

  4. Steve Rorabaugh

    I’m sure the books mentioned in the blog and also by Ms. Landsberg are well worth reading, and I myself certainly plan to do so. I am guessing, however, that the original questioner was asking something closer to “what physical sensations can I expect to experience from a death specifically caused by prostate cancer?” If I am mistaken about the questioner’s motive, then I would like to ask the question myself. It obviously will not be like dying from a gunshot wound, for example. Is it commonly described by terminal patients as constant pain (in the bones, I am assuming) that can be alleviated only by consciousness-suppressing medications such as morphine? Or is it something less severe? As seems to be the case with anything associated with prostate cancer, I’m sure it is always “different for each individual”, but what is the most common experience? It obviously is not a pleasant issue to address, but I suspect many of us are wondering about the answer. Thanks for your guidance.

    • In my experience the physical aspects are dominated by fatigue. In one of the sequences in “When Breath Becomes Air”, Kalanithi writes: “I can’t go on“, I thought, and immediately, its antiphon responded, completing Samuel Beckett’s seven words, words I learned long ago as an undergraduate: I’ll go on. I got out of bed and took a step forward, repeating the phrase over and over: I can’t go on. I’ll go on.
      Later as he is obviously much closer to death he describes time: “Looking over the expanse ahead, I saw not an empty wasteland but something simpler: a blank page on which I would go on.” The very terminal hours are of course impossible to know since most patients are unconscious (usually drug induced), but potentially the physical/mental experience is like that described by another neurosurgeon, Eben Alexander in his book, “Proof of Heaven” (which I also recommend). As he slips into unconsciousness he thinks he hears grinding sounds that I interpret as being the sounds of his respirator and other hospital equipment. This was followed by his own moving and beautiful experience with “other beings” that are similar to what other patients have described in their accounts of near death experiences. C.S. Lewis talked about meeting “solid people” in his treatise “The Great Divorce”, an allegorical tale that is a classic in Christian literature about a bus ride from hell to heaven. When I have been at the bedside of dying patients, they are almost always in what appears to be a peaceful coma as best I can tell – even when they draw their last agonal breaths. I hope that helps.

  5. john c miller

    great article, mike. thank you

  6. Tim Roels

    Mike, great read, thank you for your assistance during my journey !!

  7. Rob Raker

    Thanks for starting a discussion that far too many avoid at all cost. Really appreciate your frank, honest and thoughtful assessment of death. As Steve above mentioned, it would be interesting to some of us, the more specici details of prostate cancer progression to that endpoint we call death. As always, I look forward to your blog entries.

  8. Bob Lederer

    A great thought piece. The timing of your message (Good Friday) cannot be missed by the Christians among your readers. For many of various religious faiths the death experience is a topic in all teachings.
    You have successfully bridged the science and the philosophical meanings of the death experience. This was artful. My personal experience at the bedside of those who were dying in almost every case was the peace that came over the body at the end of life. Even when not drug induced for a patient who was not in pain, there was the very quiet end to the living functions. Many are accepting and ready when that moment comes, especially the elderly but having the loved ones at the bedside is very important if possible. You mention love and it was my own mother who observed in her 95th and final year that there is so little “touch” in their lives and how much it meant to be hugged, held, patted or touched in some meaningful way.

  9. Amy

    Wow. This is very powerful. It’s a keeper. I also love the quotes you have included.

  10. MIchael Glode

    I agree with the touch issue. I have been at the bedside of two physicians in the last year as they died, and the family holding their hand or stroking their foreheads was definitely a contribution to a peaceful passing in my view. The lovely and moving play “Wit” with Emma Thompson captures a nurse ministering to the last moments of the patient and is so beautiful it still brings tears to my eyes. You can watch it here: https://www.youtube.com/watch?v=ND1-r3beO6k

    • Bob Lederer

      Wit was done by the Denver Center Theater Company a few years ago. We have been subscribers since the company began and this play is the one I remember the best. Not Emma Thompson but a fine actress who transformed us all.

  11. edward 0wher

    Just now, I found within the massive expanse of the Internet this that you so beautifully wrote. Whether serendipity or something greater, this was exactly what I needed to ease my racing, weary mind. Thank you for embracing such a difficult, yet vital topic.

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