Humanities in rehabilitation

This post concerns training in and education about empathy in the practice and delivery of rehabilitation. This blog suggests that education to increase empathy is needed and is possible. This education is best acquired by studying the humanities, though academic study is also possible. The blog points out that education or training in humanity is not the same because most people working in rehabilitation will have high levels of humanity. It gives some examples of resources.

A short story

One Friday afternoon in April 1978, I ruptured the long flexor tendon to my left middle finger. A surgeon repaired it that night, and I awoke at 6.00 on Saturday in a busy trauma ward. I answered as many questions from patients as I could (few, being a medical registrar), read the papers, had breakfast, refused intra-muscular penicillin and by 09.00, I was bored. The surgical team came in, stood at the end of my bed and muttered to each other, and said, “we’ll see you again tomorrow morning.”. I left about one hour later and returned for the check the next day.

On Monday, doing the ward round with my senior house officer, I discharged about one-third of the patients. Halfway around, she left ‘to see a patient’ and phoned the consultant, concerned about my mental state. The consultant, fortunately, agreed with my actions.

My very short stay in hospital had suddenly shown me how incredibly boring being in hospital is. I then realised how boring it was for a patient to wait five days for a ‘check X-ray’ before going home. I had empathy, an understanding of what the patients were experiencing.

Is humanity the right word?

Humanity, in this context, means “the quality of being humane; benevolence“, and humane means “having or showing compassion or benevolence“; and compassion means “sympathetic pity and concern for the sufferings or misfortunes of others“; and benevolence is “the quality of being well-meaning; kindness”. [OED] These phenomena are not what I am concerned about, though the word is widely used in healthcare, for example, in an excellent series in the Journal of American Medical Association: Psychiatry. (here)

The word we need to consider is empathy, “the ability to understand and share the feelings of others.” [OED] As the Oxford English Dictionary points out, empathy and sympathy are not only different words, but they have pretty different meanings, a difference that is crucial in this context. For a more poetic, revealing distinction, read this poem. (here). It says it much more powerfully.

Sympathy refers primarily to the feelings of the person concerned, feelings precipitated by another person’s situation. If I feel sympathetic for someone who has recently lost £100,000 or whose son recently died, I am experiencing sympathy. The other person may appreciate the fact that I am sorry for them on their behalf. In the acute phase, compassion is not inappropriate. Nevertheless, I am not considering the other person’s feelings and experiences. As an external observer, I am feeling or imagining what I would feel in the other person’s circumstance. I am not considering what they are feeling.

In 1978, I might have accepted sympathy for the loss of the flexor tendon, but what I needed, when the surgical team came around, was empathy; a thought about what it would be like, for someone with no pain or loss other than a left arm in plaster, to sit on a ward with nothing to do for 12-16 hours.

Benevolence and compassion are other aspects of the same phenomenon. They are considering the other person from an external perspective. All these concepts make assumptions about the other person, what they are experiencing and, more importantly, what they would appreciate or want from the observer. The word patronising is often used to describe this approach – “treating in a way that is apparently kind or helpful, but that betrays a feeling of superiority.” [OED]

Nevertheless, the term humanities is probably an appropriate word to use concerning education because humanities refer to “learning concerned with human culture, especially literature, history, art, music, and philosophy.” [OED]

To conclude, we need to consider improving empathy, but this means pursuing education through the humanities. We should still show humanity when it is appropriate to do so, and we should certainly avoid being inhumane, but we must also avoid unintentionally being patronising.

Why be more empathetic?

I can imagine, possibly unfairly, that some professionals will be saying, “This is all airy-fairy, motherhood and apple pie nonsense. We need to be dispassionate and able to do the best we can for the patient.” I will overlook the implication of superiority hidden in that thought and try to show why empathy can and should have substantial beneficial effects, increasing the effectiveness of rehabilitation.

When one does not understand someone’s behaviour, one of the best ways to start is to imagine yourself in their situation, considering their past, what they feel now, how they see the future, and how they interpret what is happening. Then you might gain a better insight into the choices they are making, the behaviours you witness. Being able to understand and share their feelings will improve your care and make it more effective.

For example, a patient under my care once, tetraplegic but able to swallow, started to ask for vegan food. She gave no apparent reason. Her skin began to break down. The probable explanation for her choice was that she was exerting control; instead of receiving standard hospital menus, she could choose her diet. Everyone was very sympathetic, kind and attentive to all her obvious needs – except one need, her need for autonomy. Any choice she did make was met by “no, you can’t do that because it will ...”. We failed to consider her perspective.

A degree of empathy will make it much easier to share decision making, negotiate, to demonstrate your humanity by showing that you have some awareness of her situation. The result is a patient who is likely to be much more committed to the rehabilitation plan.

The second reason is one of showing respect. Sympathy shows concern but not respect. Empathy allows you to demonstrate your respect for the person and their choices and desires. A person with a complete spinal cord injury who insists on hoping and trying to walk will be unmoved by your sympathy. If, however, you can empathise, showing your appreciation of his perspective, the patient may be more inclined to follow your advice.

Increasing empathy

At first glance, one might think that qualitative studies published in rehabilitation journals would be a good source of information. It is but to a limited extent. Most studies focus on practical matters. What was the experience of a rehabilitation intervention, the discharge process, or limitation on activities? These are essential studies in improving the generality of services, but they give less insight into the experience.

The next source, often quite illuminating, is to read an account of someone who writes from a position of being disabled. One example is my friend and colleague, Udo Kishka, who had a stroke shortly after retiring in 2016. He now gives talks entitled: “I am an expert in stroke rehabilitation. I thought I knew all about stroke until I had one. Now I know I knew nothing.” and then he works through many things he never knew. You can read his book. (here).

There are many books like this. Unfortunately, the author often writes as a professional for a professional, not as a person for another person. The books usually phrase everything clinically. They can be interesting but are almost too academic.

Third, people who have no connection to healthcare also write books about their illnesses. One book that I frequently quote from is Reynolds Price. A whole new life: an illness and a healing. New York Atheneum 1994. (here) The quotation I mainly use is, “The kindest thing anyone could have done for me would have been to look me square in the eye and say this clearly:  ‘Reynolds Price is dead.  Who will you be now?  Who can you be now and how can you get there double-time’”. I think it expresses, very clearly, the importance of thinking about social role function sooner rather than later.

A second author I think is worth reading (there are many more) is a philosopher, Havi Carel, who has written several books about her illness, a life-limiting progressive disorder. One is ‘Illness. The cry of the flesh‘, now on its third edition. (here) Another is the ‘Phenomenology of illness‘. (here) Both give an entirely new outlook on illness and disability.

Next, there are journals and journal articles. For example, a recently released series from the Journal of the American Medical Association: Psychiatry on Humanities and the Arts discusses what art can teach about the human condition (here). Other sources include the Journal of Humanities in Rehabilitation (here), which recently published the poem on empathy mentioned earlier, and Hektoen, a medical humanities journal. (here). It has currently published the experience of someone with a brain-stem stroke – educational for anyone working in ITU. (here)

Last, and most important of all, it is a matter of reading novels. Novels tell a story from the perspective of someone. Novels frequently involve people who experience discrimination against them, loss of autonomy, being ill, and many other phenomena relevant to people’s understanding. In most stories I read, there are insights that further my ability to empathise with my patients.

To conclude, to be an excellent rehabilitation professional, it is essential to acquire, at second hand, an insight into the experiences and feelings of people facing adversity through illness and loss of autonomy. The acquisition can be targeted, reading qualitative literature in healthcare journals, reading accounts by people who have been and/or remain disabled, and reading humanities journals. Less targeted but more enjoyable and equally informative, one can acquire experience vicariously through reading novels, watching plays performed, or films. A rehabilitation professional also needs to be a Renaissance person, a polymath with a broad scope of knowledge. Empathy will follow.

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