Some thoughts on kindness in medicine
I’ve recently received a proper steer about what to call the rare disease that has for the last few years so affected my health. It’s called BCGosis. Although BCG is usually well tolerated as part of the treatment for superficial bladder cancer, in about 1% of cases it can lead to BCGosis. Anyway, that’s what I’ve had and now I’ve got a name for the beast. Such a liberation, such a powerful yet simple tool for the patient.
For me as a patient, having a name for this health-robbing condition after years of it being referred to as a ‘mystery’ illness, has been a tremendous step forwards. It has given me some agency as well as a glimpse of how life it might be in the future – not dominated by the old familiar cloud of unknowing. And, right here and now, I can say unequivocally that I see being told by a senior consultant exactly what has been wrong as a real act of kindness.
Meaning of kindness in medicine?
This has caused me to reflect on the meanings of kindness in medical training and in medical practice.
“They may forget your name, but they will never forget how you made them feel.” Maya Angelou
For example, it seems to me that certain medical institutions and services embody the very essence of kindness. I’d include here hospices and most other palliative care units and services. But then I’d also include intensive care services. I found the one I spent time in to be quite extraordinary. Kindness and care were woven into the very fabric of the service.
As a patient I appreciated the ‘time out’ it offered. Here there was little sense of real time or real time pressures. Staff were friendly and amazingly attentive, even to the extent of engaging with me properly as – in the midst of my illness – I talked about being visited by the Hindu god Ganeesh in hospital! I would dearly love to know how this healing environment is created, and recreated.
In reality most of us patients don’t spend much time in intensive care, so acts of kindness on the ward or in other settings are super important. Within hospitals, caring kindnesses are to be found among staff as varied as porters and catering staff, especially porters in my experience. However, even in technical departments such as imaging, I found major variations in the general level of kindness shown by staff.
But I also generally encountered much empathy and friendliness from occupational therapists and physiotherapists who often seem to bring a breath of outside air into hospital. The main problem in each hospital I stayed in was that they were severely overstretched and understaffed due to grossly inadequate resources for these most essential of services for patient recovery.
Actual barriers – no visitors
As I’ve mentioned in previous postings, an often-overlooked ‘kindness’ is afforded by the simple acts of conversation on non-medical matters. For instance, I’m aware that my lengthy illness temporarily robbed me of the basics of how to carry out a friendly conversation, even with old friends.
This problem was made immeasurably worse by the restrictions resulting from Covid as relatives and friends were excluded from medical buildings. But I haven’t seen much written about the effects of this significant reduction in social interaction – caused by restricting or banning visitors – on patients or indeed medical staff. I hope that researchers are even now sharpening their analytical tools to investigate these matters – and, if not, why not?
Trained to be kind?
A crucial issue is whether doctors (and other medical staff) receive proper training to help ensure that they are sufficiently empathic towards patients, and recognise the importance of good communication and conversation.
Much of the research literature reports a depressing decline or erosion in levels of empathy among medical students. A sense of elitism among students at some medical schools, emphases on detachment and objective neutrality in their training, and the practice of defensive medicine have been highlighted among the causes of apparent declines in empathy. (see for example Litman on Empathy in Medical Education)
“The image of the technically skilful, rational, and emotionally detached doctor dominates the profession, and inhibits physicians from engaging emotionally with their patients and their own feelings, which forms the basis for empathy.” Kerasidou, A. and Horn, R.
While a certain degree of detachment is important, the authors rightly point out that over-detachment can have serious consequences for both physicians and patients. They conclude that empathy should not only be expected but actively promoted, assisted and cultivated in the medical profession.
This more nuanced picture is borne out by other authors, such as David Jeffrey who found that student empathy increased during training but he also describes how medical students can struggle with the needs to connect properly with patients and to retain professional detachment. He discusses how students and practitioners may be supported in dealing appropriately with their own emotions as well as with those of their patients.
To me it seems extraordinary that an apparent decline in kindness and empathy as students pass through their training years in the West is not commented upon more widely. Nor about the fact that medical students are more likely to exhibit mental health issues than other students.
“The good physician treats the disease; the great physician treats the patient who has the disease.” William Osler
More empathy, better outcomes
However, what is gratifyingly widely accepted in research literature, is the link between kindness and positive patient outcomes. As a patient I would argue that this occurs because the patient comes to trust their doctor almost unconditionally. This must aid patients’ compliance and reduce unnecessary stress among them. There may also be some psychological factors at play here, namely that the patient comes to accept that they themselves can play an essential part in the management of their condition and recovery.
For many patients achieving a somehow more equal ‘status’ with their doctor is a welcome return to some sort of normality, which helps them in their new and hopefully brief role as an ill person. And importantly this is more likely to encourage patients to report symptoms and participate in discussion about treatment options where possible. All too often, one hears anecdotes about people being too fearful to mention worrying symptoms to doctors, or feeling that they are in a subordinate position and not `entitled’ to ask too many questions.
Furthermore it can achieve more patient enablement – as evidenced by my positive reaction to finally knowing the name of ‘my’ medical condition.
But…other stuff can get in the way
All this may be true yet it can be so easily overtaken by a host of negative patient experiences in hospitals and other scary places in the health system. One major culprit is `managerialism’ (i.e. belief in the value of professional managers and associated concepts and methods, which may bear little or no relation to the reality of patient and staff needs ). And it is just when we are ill and frightened that we are least likely to accept the managerial strictures imposed on institutions. When I am ill I do not care a jot about ‘Mission Statements’ nor about how new parking arrangements are likely to improve customer experience(!).
No, I want to know what you are doing to make my hospital stays less disruptive and distressing. For example, I do not want nurses on nightshift to feel that it is OK to wake patients by talking loudly to each other. I want technicians to leave their computer screens and say hello to us patients. And I can do without an officious staff member shouting because I’ve inadvertently broken some rule, especially during a period of delirium. I also saw this happen to other patients.
More broadly, doctors, nurses and other hospital staff need the time and energy to talk properly with patients. It is far too large a subject for this article but clearly the shocking level of reductions in NHS finances in real terms, and in resources over the last ten years or so, have placed highly demoralising burdens on staff. The subsequent pressures and also the use of agency workers – who may well not be knowledgeable about individual patients’ needs – often mean that conversation and communication with patients go by the wayside. And professionals’ empathy with patients can also be adversely affected by management pressures to `get the job done’ when dealing with too many people, too long shifts, and too much stress.
Elevating empathy
So how do we maximise the kindness elements in the design and delivery of medical care? Here are a few thoughts. First, the qualities of good communication and empathy need to be elevated to a high status in training and also in ongoing career development. Secondly, proper support and tools need to be in place to help medical professionals to deal with their own emotions and professional pressures.
Finally, we need to ensure that patients are pro-actively helped to feel part of discussions with medical staff and entitled to ask questions and contribute if they wish.
“It’s not what people do to you, but what they mean, that hurts.” E M Forster
Some other useful references:
Triffaux JM, Tisseron S, Nasello JA. Decline of empathy among medical students: Dehumanization or useful coping process? Encephale. 2019 Feb;45(1):3-8. doi: 10.1016/j.encep.2018.05.003. Epub 2018 Jun 28. PMID: 29960682
Majumder, Md Anwarul & Ojeh, Nkemcho & Rahman, Sayeeda & Sa, Bidyadhar. (2020). Empathy in medical education: Can ‘kindness’ be taught, learned and assessed?. Advances in Human Biology. 10. 38. 10.4103/AIHB.AIHB_14_20.
