As clinicians, we often find ourselves accompanying the sick along roads that we have yet to personally travel. This jarring contrast in experiences is perhaps most acutely felt in end-of-life situations. Such roads may bring encounters with unrelenting pain and debilitating fatigue, treatment dilemmas with no seemingly good choices, and the final process of dying itself. Sensitively offered, we hope our companionship brings a measure of comfort. We are perhaps less eager to explore an uncomfortable truth that our actions, however well-intentioned, risk generating distance and a stark sense of isolation, so amplifying our patients’ suffering. The Death of Ivan Ilyich is a powerful narrative of the loneliness and anguish of a dying man, who experiences his interactions with family, colleagues and clinicians as a painful charade. As Hematologists dealing in the currency of death on a daily basis, this short story serves as a salutary lesson, yet also offers great hope. This is the first of a short series of perspective articles by Dr Stephen Hibbs, aiming to a provoke reflection on the wider impacts of our work.
Written by Leo Tolstoy in the 19th Century, this short story centers upon Ivan Ilyich, a Russian magistrate. Just at the time that Ivan is achieving success and satisfaction in his work and respect in society, he has a seemingly inconsequential household fall that leaves him with a persistent pain in his flank. This pain further sours his strained relationship with his wife and she eventually convinces him to see a doctor.
Here and elsewhere in the story, the doctor's interaction with Ivan closely mirrors his own interactions with people standing trial in the court of law. We are told of the “waiting and the assumption of dignity, that professional dignity that he knew so well, exactly as he assumed it in court, and the sounding and listening and questions that called for answers that were foregone conclusions and obviously superfluous”. The doctor gives a long and impressive speech talking through the differential diagnosis and the plan for investigations, but when Ivan meekly asks whether his illness is dangerous, “the doctor glanced severely at him through one eye through his spectacles, as though to say “Prisoner at the bar, if you will not keep within the limits of the questions allowed you, I shall be compelled to take measures for your removal from the precincts of the court”. Ivan receives no answer, and he is bowed out of the room.
Even though the doctor fails to answer Ivan's only question or to show any shred of empathy, Ivan commits wholeheartedly to the doctor's recommendations and his life becomes profoundly medicalized. He becomes obsessed with stories of other people's illnesses, deaths and recoveries. He follows the treatment plan to the letter and tries desperately to believe that it is working. But any times he is upset or encounters an unrelated negative experience, his pain returns and his belief in his recovery collapses. As a result, he becomes increasingly angry at those around him who cause even the slightest upset. No part of life is left untouched – even his favorite hobby “screw” (a Russian card game) becomes impossible to enjoy, as he realizes that his pain and presence makes his friends unhappy.
Ivan's health further deteriorates. In his pain and fear of death, Ivan “longed more than anything for someone to feel sorry for him, as for a sick child”. Sadly, his interactions with colleagues communicate a dull seriousness, and a deep resentment to his family and doctors. None of them acknowledge that he is dying, though Ivan knows it, and knows that they know it. Tolstoy writes that the “falsity around him and within him did more than anything to poison Ivan Ilyich's last days”.
This is a bleak tale, but it contains two notes of hope. The first is the character of Gerasim. Gerasim is a young peasant who works for Ivan and his family. As Ivan weakens, Gerasim helps him to eat and use the toilet. In the long, painful nights, Gerasim sits with Ivan and allows him to rest his legs upon his shoulders. He speaks straightforwardly to Ivan, even at one point acknowledging that he is dying. “Gerasim alone did not lie; everything showed clearly that he alone understood what it meant, and saw no necessity to disguise it, and simply felt sorry for his sick, wasting master”.
The second is during Ivan's final living hours. After months of turmoil, Ivan experiences a sudden inner quietness as he acknowledges the many self-deceptions in his life, and his personal failings. Where he previously felt only anger towards his family, he now feels a deep compassion and pity for them. He attempts to ask their forgiveness but is too weak to express it. Nevertheless, in his attempt to set his family free, “it became clear to him that what had tortured him and would not leave him was suddenly dropping away all at once on both sides and on ten sides and on all sides”. He is free to die in peace.
The story causes me to stop, and to check myself. I am struck by the chasm of experience and understanding that exists between myself and patients I meet, whose experiences of suffering and fear I cannot imagine, despite my best efforts. I have often heard clinicians expressing their frustration at the patient who will not accept a ceiling of care or a move to palliation. But whilst we may feel utter clarity on what is right for our patients, these logical acceptances are not paths that we ourselves have walked. Ivan's experience of allowing (or even causing) his life to become almost completely medicalized, only to see the medical system fail to help or cure him, surely reflects the experiences of many of our patients. It is remarkable to me how many patients at the end of a long, intensive and unsuccessful treatment path, are still able to maintain any open and heartfelt relationship with their clinicians.
As I read of Ivan interpreting the doctor's questions and examinations as a callous charade, I am reminded of the need to scrutinize my professional routines and habits in the presence of those who are suffering and dying. How does it come across when I am listening to their chest, or asking about how their night has been? How do I make it clear in my medical actions that I know that their suffering and dying is not “business as usual”?
The Death of Ivan Ilyich1 gives few answers to our vocation as guides to dark paths we have not (yet) trod. But its expression helps us to tread more softly on this ground: to know again that our empathy is limited, and that we know only the tip-of-the-tip-of-the-tip of the iceberg of a patient's hopes, fears, connections and isolations. It emphasizes the importance of self-reflection, rooting out any pomposity, pretension or briskness that can slowly take root in our interactions with suffering people. And it helps us look for the flickers of hope – the Gerasim moments of human connection, and the mysterious and deeply personal moments of acceptance that can occur as someone is dying.
1. Tolstoy L. The Death of Ivan Ilyich and Other Stories (Wordsworth Classics)
. Hertfordshire, United Kingdom: Wordsworth Editions Limited; 2004.