Richard Smith: How we shun the mortally ill

richard_smith_2014When you develop a mortal illness, as you will do if you’re not one of the fifth of the population who dies suddenly, you are likely to find that many friends desert you. The same will happen if somebody in your family develops such an illness. And if you’re a doctor then the people most likely to shun you are your medical colleagues. The isolation of the seriously ill and their relatives is the great unrecognised scandal of our age, said Neil Vickers, reader in English literature and medical humanities at King’s College London, at a recent symposium on Ambiguities and Paradoxes in Clinical Medicine. The able bodied in this way make the suffering of the seriously ill much worse.

Fergus Shanahan, professor of medicine at University College Cork, found that many of his colleagues looked the other way when his son developed a serious illness. He pointed the symposium to a famous 1982 article in the New England Journal of Medicine by the endocrinologist David Rabin from Vanderbilt Medical Centre who described how when he developed amyotrophic lateral sclerosis he became isolated from most of his fellow physicians. (Vickers, who collects accounts of serious illnesses, observes that patients with amyotrophic lateral sclerosis write the best accounts—probably because they have the time.)

At first Rabin kept his condition hidden, but eventually it became obvious:

“The inquiries [about my health] ceased and were replaced by a very obvious desire to avoid me. When I arrived at work in the morning I could see, from the corner of my eye, colleagues changing their pace or stopping in their tracks to spare themselves the embarrassment of bumping into me. This dramatic change in their behaviour occurred when it became common knowledge that David Rabin had ALS. I state with total conviction that my colleagues never meant to hurt me. On the contrary, I was of Vanderbilt, and they grieved for me, yet were unable to express their grief.”

“Non-physicians—the technicians, the secretaries, the cleaning women—“ did not, he observed, avoid him in the same way.

At the heart of Rabin’s article is a chilling story:

“One day, while crossing the little courtyard outside, the emergency room, I fell. A longtime colleague was walking by. He turned, and our eyes met as I lay sprawled on the ground. He quickly averted his eyes, pretended not to see me, and continued walking. He never even broke his stride. I suppose he ignored the obvious need for help out of embarrassment and discomfort, for I knew him to be a compassionate and caring physician.”

Rabin follows this story by remembering how he “always thought up a dozen good reasons to avoid visiting” a colleague who died of a brain tumour.

Why do doctors behave this way?

“Perhaps,” hypothesises Rabin,” it is because we…are the healers. We dispense treatment, counsel, and support, and we represent strength. The dichotomy of being both doctor and patients threatens the integrity of the club…the sick physician makes us feel uncomfortable. He reminds us of our own vulnerability and mortality, and this is frightening for those of us who deal with disease every day while arming ourselves with an imagined cloak of immunity against personal illness.”

Vickers thinks that Darwinism has something useful to say about why people generally stay away from the seriously ill and why some people do help. We avoid the mortally ill to preserve our own physical and mental health just as the herd leaves the weakest members at the back to be picked off by predators. But there are exceptions: we are trying to perpetuate our own genes so partner selection (mating) and kin selection (children) matter most—and so we care for our sick kin. But “reciprocal altruism” is also important for protecting our genes and helps explain why we care for some of the seriously ill who are not kin but who may lead to benefit for us and our genes. Vickers noted in support of this idea that people who have young mates are most likely to desert them if they become seriously ill, taking the chance to find a new mate.

Some of those at the symposium found this too reductionist, and Iona Heath, a retired general practitioner, thought that it is the existential dread of death that we all have that keeps us away from the seriously ill.

Shanahan offered some simple rules on how to interact with the seriously ill, their carers, and the bereaved:

  1. Don’t ignore them
  2. Turn up
  3. Ask directly “How is the cancer?”
  4. Say “I don’t know what to say” if you don’t know what to say
  5. Avoid storytelling, particularly of “remarkable cures.” This, he observed, is a common reaction.
  6. Don’t try to be funny unless you’re sure you can carry it off. (I thought here of my brother, a professional comedian, saying to my dying father: “What you need is a good doctor. You need Dr Shipman.” My father laughed.)

Rabin also ends his article with advice:

  1. “Do not ignore your colleague. Greet him. Inquire about his health. Offer him support if he is physically handicapped. Ask to visit him.” [In 1982, you will know, male pronouns were taken to include females, but “casual sexism” was also normal.]
  2. “Be conscious of the family and extend your support to them.”
  3. Bear in mind that the absence of a magic potion against the disease does not render the physician impotent.

Rabin concludes: “No one else [apart from the family] can assume the burden, but knowing that you are not forgotten does ease the pain.”

Richard Smith was the editor of The BMJ until 2004.

Competing interest: None declared.

  • Jean McK

    Interesting – and it reminds me of how people are treated when they are suddenly unemployed (though that is something that most doctors don’t have to worry about). People who seemed to be their friends, especially from the workplace, vanish into thin air.

  • Longterm Skeptic

    Possibly it is embarrassment at your bad luck and their continuing good health. The terminally-ill remind Doctors of their limitations.