Doctor, is there any hope?

This month, I recommend that you read the article entitled “The heart of healing,” which appears on page 624.¹ Patricia Dobkin draws on “The Death of Ivan Ilych,” Leo Tolstoy’s famous novella published in 1886, to reflect on the loss and restoration of hope. For those of you who have forgotten this story or never read it, Ivan Ilych was a magistrate in the court of the tsar; he lived a highly ordered, highly ordinary life, and drew great satisfaction from the benefits and power he derived from his station. One day, at the age of 45 years, for no apparent reason, he becomes gravely ill after a fall. Doctors are summoned to his bedside; unable to find a cause for his illness, they provide all sorts of assurances. Their words ring hollow, just as his own words had rung hollow as he sat on the magistrate’s bench. He is revolted by their pretense and by the mediocrity of his own life, which seems not to have the remotest connection to his excruciating suffering. Could his suffering be existential in nature? It did not occur to them to wonder. An hour before his death, his son kisses his hand. And then, a miracle: “He sought his old habitual fear of death and could not find it. Where was it? What death? There was no more fear because there was no more death. Instead of death, there was light.”²

What is hope? And what makes hope possible even in the most difficult circumstances?

Daneault et al explore these questions in their article entitled “Ultimate journey of the terminally ill. Ways and pathways of hope,”³ which appears on page 648. The goal of their research was to more fully understand the role of hope in patients who were terminally ill with cancer and to determine whether their hope evolved as their disease progressed. At one time, we believed that well-being and quality of life nurtured hope and that pain had the opposite effect. These associations no longer hold true when we factor in depression or spiritual well-being. The large study by Daneault et al, conducted at 3 different points in time, and involving patients and their close relatives and their physicians, yielded as many as 5 interviews per patient.

What the researchers discovered is that hope does not travel in a straight line. A survival impulse, hope evolves as disease evolves, from the hope of a miracle, to the hope of a longer period of survival, to the hope of good quality of life, to the hope of being able to enjoy the present moment and prepare for one’s death. And hope goes up and down and back and forth, in chaotic and irrational ways.

What about a physician’s sense of hope? Or lack thereof? What effect does it have on the patient and the patient’s illness?

A friend of mine is dying very slowly of a chronic disease. I watch his life dwindling from day to day. And it breaks my heart. Once a strong, intelligent, vibrant, funny, affectionate, athlete of a man—a far better tennis player than I will ever be—he has become a shadow of his former self. He has great difficulty moving around and takes tiny steps. He cannot stop his hand from flapping. “I used to sleep in the same bed as my wife,” he told me, “then we slept in separate beds, then we slept in separate rooms, and now I sleep in the living room in adult diapers in a hospital bed provided by the local community service centre.” The other day, he asked me if, when it got too difficult, I would help him to …. You know how this sentence ends. Now, he does not talk about it anymore.

Having practised palliative care all these years, I know only too well what lies in store for him. I know that he will continue to decline, and that one day, he will choke while eating and develop aspiration pneumonia that will be treated or not, until the next occurrence. As I write this, he calls to tell me that he has just fallen down the stairs and hurt himself. He has a bad wound on his leg. Before long, he will take to his bed and remain there.

Don’t we all have friends, family members, and patients in similar circumstances? What can we do to keep their hope intact? Should we skirt around their questions, responding that we never know what the future will bring? Should we conceal our own lack of hope to allow their hope to survive?

If only we could ask Tolstoy.

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