How we respond to patients who are feeling, or at risk of feeling shame can make or break a therapeutic relationship. This is about how I try to respond.
Shame is a negative moral judgement about oneself. Unlike guilt or embarrassment where someone thinks that fundamentally they are a reasonable person who has done a bad thing, someone who feels shame thinks that they have done a bad thing because fundamentally, they are a bad person.
Guilt is when, for example, you feel bad that you forgot to call your mum on her birthday, but you might reasonably conclude that this doesn’t make you a bad person and so you decide to make up for it and call her the next day. Shame is when you conclude that you are (and have quite likely always been) a hopeless son or daughter who is always forgetting the important things in life and feel too despondent even to call the next day.
We should suspect shame in the following situations. A patient misses an appointment because they are afraid of being judged on the basis of their blood tests . Another fails to attend a follow-up appointment after having disclosed a history of child sexual abuse. The mother who took her child to an A&E department takes them to a different department the next day with the same feverish symptoms in order to avoid the clinician who said they were time-wasting the day before.
Situations where patients blame themselves for their perceived failure to take responsibility either for themselves or their dependents can arouse shame. Healthcare professionals have, in addition to their clinical authority, a moral authority and consciously (or more often not) and intentionally (or not) pass moral judgement on their patients’ behaviour if they do not acknowledge shame and self-blame.
There are things we can do to avoid unconsciously or unintentionally fanning the flames of shame.
When someone gets sick, it is only natural for them to ask, “Why me? What did [I do to] cause this?” and then find something, perhaps something they did, on which they can pin the blame. This search for an explanation is not just about biology but is also a search for meaning. The study of meaning and interpretation is called ‘hermeneutics’ and for philosopher Havi Carel, who has a severe lung disease and has written about her experience of healthcare in her book, Illness, ‘hermeneutic justice’ happens when healthcare professionals give as serious consideration to their patients’ interpretations as they do to their own. Hermeneutic justice is an important aspect of empathy.
Empathy, according to Leslie Jamieson who wrote, The Empathy Exams, requires curiosity – we need to “ask the questions whose answers need to be told”. It is not enough to simply sit back and bear witness, we need to be active listeners. Empathy matters because if we recognise potential shame, and are aware of our moral significance we can say, ‘I understand how you feel, and you’re not alone in feeling like that, and it doesn’t mean you are a bad person’. We can separate the morality of the deed from the moral character of the person. Good people do things they regret and bad things happen to good people too. Illness is indifferent to moral character.
Empathy involves connecting with something similar in yourself – recognising what it feels like when you’ve done something you regret or the need to find something to explain a tragedy.
Empathy, according to Brene Brown, “drives connection with others”, because with gentle curiosity we prove that we want to understand what they are going through. Sympathy, by contrast, may be a kind gesture, but doesn’t require understanding in the way empathy does. We might say, sincerely and sympathetically, “oh that must have been awful”, but empathy demands that we try at least to figure out just how awful it must have been and why.
As Brene Brown says, “Rarely can a response make something better, because what makes something better is connection”, and connection comes with understanding.
Empathy also requires staying out of judgement. We may not like patients who are ashamed, for example, because they abused their children, or stole to fund their addiction. Empathy does require us to try to understand them, what they did, and why, but does not demand that we like them. Likewise although empathy requires hermeneutic justice, it does not demand that we agree with our patients’ interpretations. We can, for example, travel a long way towards understanding the lived-experience of illness without sharing our patients’ belief that it is a punishment from God. But our understanding of their experience of illness would be incomplete without also knowing something of their explanations.
After 2 years in an academic post, I have little material (publications) to show for my time, but I have managed to nurture a curiosity about my patients and the nature of suffering that is transforming my practice on a daily basis. And for that much I am very grateful.
Jonathan Tomlinson is a physician at the NHS