'Without empathy, you can't give good care'
Patients who feel understood will recover faster. But how can doctors become more empathetic? By reading literary works, suggests emeritus Leiden Professor of Medical Psychology, Ad Kaptein. He discusses this issue in his book ‘Helende woorden – romans over ziek-zijn’ (Healing words - novels about being ill).
In Die Nieren von Mick Jagger (Mick Jagger's kidneys) by Rocco Fortunato, the main character ignores his symptoms. Inspired by Mick Jagger, he continues to live his rock-and-roll life. That is, until he ends up in the dialysis department. Then the long wait begins: when will there be a suitable new kidney? What is that waiting like?
In 1944 a polio epidemic spreads rapidly throughout the US, Philip Ross relates in his novel Nemesis. Desperation makes people point the finger at the guilty: Italians, Jews, mentally handicapped, mosquitos and hotdogs. Donald, a high school pupil gets diarrhea, headache and a high temperature. By the morning he can no longer stand 'because my right leg feels as if it is dead.' He ends up in an 'iron lung', where he is to remain for years. What does that feel like?
Kaptein spent his whole working life as a medical psychologist at Leiden University Medical Center. His particular interest is in how people experience being ill, based on the idea that empathy from doctors and nursing staff can have a beneficial effect on the wellbeing and recovery of patients. 'There is already a lot of scientific evidence for this and the evidence is growing. To give good care, you have to have empathy.' Kaptein is convinced that literature can help those working in healthcare gain empathy. He can even name several novels about almost every medical specialism.'
From Solzhenitsyn to Glastra van Loon
The Helende woorden – romans over ziek-zijn collection of short stories is a plea for empathy in medicine. Kaptein, a Leiden alumnus of psychology, discusses 26 novels in which authors empathise with the experiences of sick people. From Van Solzhenitsyn (Cancer Ward) to Vestdijk (Ivoren Wachters; Guards of Ivory), and van Glastra van Loon (De Passievrucht; The Passionfruit) to Auster (Winter journal), all written about being ill. He deliberately omits novels like The Magic Mountain by Thomas Mann, The Plague by Albert Camus and Love Life: A Novel. He finds them too obvious. Kluum's book, in terms of literature, is simply bad. He looked for novels to match the illnesses that the LUMC treats and for which there is a specialist department. The chapters have appeared eaerlier in Cicero, previously the in-house magazine of LUMC.
Empathy is important in all illnesses
One doctor will by nature be more empathetic than another. 'I am sorry to have to say that you have cancer,' comes across very differently from: 'I have some bad news for you which will be difficult for you to hear.' Empathy is not just important for cancer but for all illnesses that change the lives of patients and those who are close to them, Kaptain says. Diabetes, for example, can be difficult because of the life changes it involves. Other illnesses and disabilities also take their toll, from poor vision and even blindness to the amputation of a leg, dementia and the loss of one's hair as a result of chemotherapy, which is often a major problem for women. Kaptein has heard all the stories: at the request of doctors at LUMC, he talked with many patients whose illness caused them deep emotional pain and who were referred to him by their doctors.
Kaptein graduated in Leiden as a clinical psychologist. Even as a student he was interested in the psychology of medicine. That took him to LUMC, to the department of Social Medicine. While there, he developed his own specialist field: How patients handle being ill. Kaptein makes a distinction between 'being ill' and the 'illness' itself. He defines illness as something technical, the outcome of blood tests and other measurements. Being ill, on the contrary, is about the experience.
'A good way for people to express their feelings is by writing about them,' Kaptain says. 'No set structure, just let the words flow.' He calls it Narrative Medicine, and it is a form of healing that also encompasses other arts: drawing, listening to music, whatever best suits the individual. He also talks about how he used writing in his lectures to medical students. "I asked students to write about their worst experience. And straight away, a couple of students were in tears. That just shows what writing can do to you.'
Not only thanks to women
Kaptein believes a slow improvement can be seen in the level of empathy shown by doctors. And he goes further: a student who really cannot cope with a patient's illness can even be removed from the medical programme (in Leiden). It helps that 80% of the medical students are women. Kaptein: ‘Women are more empathetic. They are less easily thrown off course if a patient starts to cry. But even so, we shouldn't exaggerate because otherwise they are pretty much the same as male doctors. They can be even tougher, in my experience. ’ Empathetic doctors don't need to cry with their patients, just show some compassion: that's all it takes.
'Helende woorden - romans over ziek-zijn' by Professor Ad Kaptein can be ordered from bookshops or via internet.