Doctors are notoriously awful about dealing with death and dying

Some things are just so damned hard to write about. People often ask me, “Why do you have so many animals?” The current count is 4 dogs, two horses and a cat. I used to say, “Because it’s good for my children to learn responsibility. Having a dog, whose life is so much shorter than our own, teaches them about love, and about death. They get to practice parenthood, before it’s for real.” The fact is, now my kids are grown. My animals are for me. They teach me about love, and acceptance, and courage, and stoicism and yes, about death. But how can one ever prepare for the death of a child? It shakes a person to the very core of his soul. I don’t practice pediatric radiation oncology. I am just not constitutionally suited for it.

So it was with remarkable dread two years ago, that I faced a consultation regarding the role of radiation therapy in a 25 year old man, who was the favorite nephew of one of my medical oncology colleagues. This young man had been a student at college when he suddenly lost sight in one eye. Initially he was misdiagnosed as having had a retinal detachment. Sadly, that was the result, and not the cause of the problem. The real problem was that he had a malignant melanoma, a very aggressive skin cancer that sometimes arises from the back part of the eye. By the time he was properly diagnosed, the disease had taken away all chance of preserving sight, and the eye was removed. It was an extraordinarily difficult choice for a young man to make—his eye, or his life, but he chose life. Or so he thought.

By the time I was asked to see him, about six months later, he had a different problem. The cancer had spread to his spine, and he was in excruciating pain. He had been on chemotherapy which had not halted the progression of the disease. Although melanomas are not thought to be very responsive to radiation, it was felt to be the last resort to try to get the pain under control. What I remember about that first meeting was his incredible demeanor, his grace under pressure, his forebearance, and his calmness. Here was a young man who already knew that he was going to die. If he was angry, I certainly couldn’t tell. This young man had decided to fight. And fight he did.

Fortunately, his spinal tumor responded to radiation and his pain abated. Despite the brief respite, his disease progressed –in his liver, his lungs, his bones and his skin, inexorably, site after site. His doctors tried experimental protocols, vaccines, immunotherapy, every conceivable treatment available. And each successive treatment failed—one after another after another.

The last time I was asked to see him, it was for pain resulting from a massively enlarged liver, loaded with cancer. My staff bent over backwards to make sure that he could be seen, planned and treated all in one session. In a radiation therapy department, this requires the coordination of at least 7 or 8 people, from the secretary, to my nurse and me, to my physicists, and finally to my therapists on the linear accelerator. Everyone wanted to help this boy. Despite his discomfort, and the shortness of breath caused by the liver constricting his lung capacity, he apologized for inconveniencing so many people. We treated him at the end of the day. I was surprised in the end that we were able to treat him at all, since it was so difficult for him to lie down and to be still, despite the fact that he had lost the use of his legs a few weeks earlier and was confined to a wheelchair. The plan was to give him a single palliative treatment of radiation then return him to hospice care. But it was far too difficult for me to say goodbye. Instead I said, “if you’re better next week, come back and we can give you another treatment.” I did not say goodbye. I never said goodbye.

That last treatment was Thursday October 27. He died on Halloween, October 31, nearly a year ago. His uncle, my colleague was kind enough to tell me that the last treatment helped him, even if only psychologically. Until the day he died, he talked about coming back to see his friends in radiation therapy, and me. He passed peacefully, surrounded by his friends and family.

Doctors are notoriously awful about dealing with death and dying. The experts say it is because we do not like to admit defeat and we do not like to face our own mortality. As a group, we detest funerals, and we do not typically go to funerals of our patients, particularly in the field of cancer medicine. The day came that this young man’s memorial service was held, in a beautiful garden at a public park, on a lovely fall day. There was not an open chair in the garden. Every single physician who had cared for this boy was there, and every last one of us was crying. Sometimes, we just cannot run away.

When I was sixteen years old, and in high school, my history class was shown 16mm footage of the liberation of the Nazi death camps by American soldiers at the end of World War II. I saw the hollow eyes, and the starved bodies of the survivors, too numb to even react. And bodies of the dead, piled beside the road. I remember that grainy black and white footage like it was yesterday. Because that was the day I began to question the existence of God.

I know that when people die, the survivors say, “He went to a better place.” Or “This has served a higher purpose.” But really, what do you say when a child dies a hideous death from cancer? If there is a higher purpose, I would really truly like to have it explained to me. My friends and acquaintances say to me frequently, “Isnt it SO hard to do what you do? ” Most of the time, it is not. But sometimes it is. This was the one that was the hardest of all.

Miranda Fielding is a radiation oncologist who blogs at The Crab Diaries

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  • HH

    Unaccustomed as I am to explaining anything to a doctor, I may have something useful on your “higher purpose” question, based on what I learned adjusting to the loss of two of my three children.

    I don’t think the answer will provide any comfort, but it may provide some small incentive.

    I think “higher purpose” is not exactly the best way to look at it, though it’s close. My humble opinion, you have to go to the big picture. Actually, three big pictures.

    #1) The system:

    As we know, death is a necessary part of (multicellular) evolution, since you could hardly have survival of the fittest if there were no death to survive in the face of.

    But it’s also true that for the system (evolution) to work, the individual has to avoid death as long as reasonably possible. That is, after all, the prize of evolution — survival.

    This is part of the tension we feel every day. Death is a necessary precondition for our existence, since we would not have been created but for this great awe inspiring system that is built (partly) on it, and we could not live ourselves but for the death of the plants and animals we eat.

    Nevertheless our own personal death clearly carries no benefit (to us) unless pain control becomes an issue, and we fear it, hate it, fight it, and dodge it all our lives. Which is exactly what we are supposed to do, even when there’s pain, as long as it’s pain we can hack. And we are most of us pretty good at hacking pain.

    We always think “Just let me get through this, I’ll do better next time.”

    #2) The fairness situation:

    It hits us the hardest when the young, particularly our own young, die. It not only burns to have our relationship snapped, it violates our deeply built in sense of fairness. But in other parts of our brain, we know better — we are here (and we survive) mostly by chance, by (as the saying goes) the skin of our teeth.

    Nature provides no covenant, only opportunity, so there is no agreement to have been unfairly broken. But just because we don’t have a right to complain about it doesn’t mean we are wrong to complain — we may foolishly shake our fist at the stars, but if we handle it right, our pain and outrage will steel us to fight harder, work smarter, the next time. And usually, one way or another, there will be a next time.

    #3) The opportunity:

    I know of nobody who seems to have died at the right time. It is too early, or before their “time,” or deep in old age, which sounds good until you realize that this is, as a rule, after several of the person’s organs have quit working right, which tends to be undignified, not to mention unproductive. Not only that, but if you live long enough, you see a lot of other people die, so you really don’t escape much.

    If you raise someone and they die, even if you did nothing wrong, you tend to feel like you struck out. You think you loved them and raised them for nothing. Even if you only care for them when they’re sick or teach them in school, or just know them, if they die, you feel a little bit like you struck out, and if you loved them, you lost that love. It’s even worse if you were a jerk the last time you saw them and said something unkind, and then they’re gone and that last idiotic thing you said will float around with them in eternity.

    You can’t go back and apologize, but you can always remember the person you lost, you can try to learn all you can from it if there is anything to learn, and you can continue to love them, after a fashion, but most of all, most importantly, somewhere in your mind, you have to learn to forget that you struck out.

    You already know why. One way or another, life being what it is, there will probably be a next time.

    You have to be ready.

    • Miranda Fielding

      Thank you HH for taking the time to try to answer my questions. As a radiation oncologist, I know that there indeed will always be a next time. It’s a reminder to be kind, THIS time. My condolences on the loss of your children, and my deepest respect for your courage. Miranda

  • http://www.facebook.com/kathy.torpie Kathy Torpie

    The loving compassion that each of this young man’s carers provided through his long battle against cancer is, at least in part, what supported him in meeting his death without bitterness and with courage. Because you are not the God you question, you can’t always cure your patients. You can’t always control when death will come – though it will eventually come to all of us. What you CAN do is care. And, whether it be at the end of the patient’s life or not, that care is what differentiates curing and healing. You CAN heal….and you did!

    • Miranda Fielding

      Kathy, you are right that this young patient had MANY who cared for him, and not just physically but also spiritually. His uncle, the oncologist, is a big proponent of integrative care, and these complementary treatments were so important. Thank YOU for caring and responding. Miranda

  • http://www.caduceusblog.com/ Deep Ramachandran

    Thanks, Dr. Fielding, for writing this article. I have often reflected on this idea myself. As a critical care physician I often have end of life discussions with people, who decide to stop treatment and allow death. Normally at the end of most patient encounters I say something like “see ya later” or hang in there” It’s strange to me that I still use those words after a meeting with someone who has decided to die. It seems easier than things like that than to say “don’t hang in there” or “I won’t be seeing you later” or “goodbye”.

  • StephenModesto

    Thank you for sharing the event/experience with the 25 year old man. Words are easy..Theory always writes better than practice. I have no `idea’ how I would seek to adapt to the cumulative pain associated with presentation you described. Regardless of `higher purposes’, `spiritual meaning’, `metaphysical implications’, `life’s mysteries’, `hidden plan’, `God’s purpose’…all of this becomes second shelf with the distraction of un-mitigated pain. The human expereince is a shared one. Vicarious learning has a significant potential. It does remain preplexing, as the irony of the titled post, that Doctors who have developed and achieved such a cognitive competency in the `understanding’ of the mechanics of human life encounter such an impasse of awkward `personal’ displacements when required by the `job’ to effectively navigate the process of dying….I would like to feel your article and presence in the `business’ will serve as an orienting point for others.

    • Miranda Fielding

      Thank you Stephen. Even after 30+ years in the “business”, this experience was life changing for me.

  • Molly_Rn

    Thank you for caring. I remember thinking I have gone to too many funerals when it seemed every ICU patient that I had cared for was either dead or dying. Life is a crap shoot. You are dealt a hand of cards and it isn’t the cards it is how you play them that counts. Life is not fair and never will be. You will never fully accept that, I know try as I may I can’t quite give up on fairness. You don’t get a medal for suffering, but you can provide loving care and pain meds to try to relieve the suffering. You can be the buffer between the pain and fear; you can “love” your patients and their families and be the one they can count on sometimes just to be there. It is hard.
    Hamlet
    The murmurs ebb; onto the stage I enter.
    I am trying, standing in the door,
    To discover in the distant echoes
    What the coming years may hold in store.

    The nocturnal darkness with a thousand
    Binoculars is focused onto me.
    Take away this cup, O Abba Father,
    Everything is possible to Thee.

    I am fond of this Thy stubborn project,
    And to play my part I am content.
    But another drama is in progress,
    And, this once, O let me be exempt.

    But the plan of action is determined,
    And the end irrevocably sealed.
    I am alone; all round me drowns in falsehood:
    Life is not a walk across a field.
    Boris Pasternak

    • Miranda Fielding

      Thank you for your notes and that lovely poem–I had not seen that before. Beautiful.