"Caring about" ill persons

In chapter 2 of her book (illness, 2008, Acumen) Havi Carel discusses the attitude of others towards her illness; this is an excellent book which I would thoroughly recommend. Carel says of illness “There are many terrible things about illness; the lack of empathy hurts the most” page 37. In this posting I want to examine this apparent lack of empathy. In my last posting I argued all empathy can be considered to be limited to some degree. I further argued that this limitation by degree may be necessary to enable health professionals do their job successfully. In this posting I want to consider the apparent lack of empathy for the ill person by his friends, colleagues and acquaintances. I will suggest this apparent lack of empathy might be better described as blocked empathy rather than limited empathy and will suggest ways in which this blockage might be eased.

All emotions are intentional in some way. This intentionality gives us reasons to act. It would be stupid to say I fear a tiger if I fail to flee, provided I can, when I see one approaching me. Empathy is experiencing the emotions of another and hence gives us a reason to act. Recently my wife was successfully treated for breast cancer. However the time of her initial diagnosis and subsequent lumpectomy followed by radiotherapy was stressful and worrying for her. During this period I felt natural empathic concern for her. Concurrently with this concern I had strong feeling of helplessness. I am sure my wife also felt this helplessness. Because I am considering attitudes to ill people I want to concentrate on my own feeling of helplessness. I have suggested emotions based on empathic concern naturally give us reasons to act. Perhaps my feeling of helplessness partly occurred because I felt an inability to react in a meaningful way to my concern. My concern felt as though it was in some way thwarted or blocked. This perceived inability may deny ill people due empathic concern and in extreme cases destroy this concern completely. Carel speaks of her friends who stayed away because they do not know what to say, page 50. I now want to suggest ways round this apparent blockage. I have argued that health professionals must limit the degree they experience empathy. I will argue that friends of an ill person need not limit their experience of empathy for the ill person but that they must accept limitations on how they can react to this experience. Nevertheless I will further argue their reactions can be meaningful.

I have argued in previous postings empathic concern for someone must involve respecting his autonomy. I now want to consider our attitude towards the autonomy of an ill person. In healthcare in the west there is a long tradition of informed consent which is based on respect for patient autonomy, indeed I wrote a thesis on this subject. This respect means accepting the decisions of a competent patient. However if we believe respecting the autonomy of an ill person is simply means accepting his decisions then I believe we possess a very impoverished view of the value of autonomy. Gerald Dworkin sees part of the value of our autonomy as being “recognized as the kind of creature capable of determining our own destiny” (1988, The Theory and Practice of Autonomy. Cambridge University Press, page 112). Dworkin’s view of respecting autonomy might be seen in part as a phenomenological view, the view favoured by Carel. Respecting autonomy according to Dworkin is not just treating someone in a certain way by accepting his decisions but involves seeing him as someone who is capable of making his own decisions. Carel points out being chronically ill often results in people talking to one’s companions or carers rather than directly addressing the ill person. In such a situation even if the person behaving this way accepts the ill person’s decisions I would argue because she fails to see the ill person as someone who can make his own decisions she does not respect his autonomy. It follows because such behaviour is incompatible with respecting autonomy it is also incompatible with genuine empathic care. Carel also argues ill persons are expected to conform to certain patterns of behaviour dictated by society or others. Presumably such conformist ill persons are expected to make decisions that conform to some expected norm. In the light of the above it would appear the ill persons are not being seen as the sort of persons capable of making their own decisions and hence once again their autonomy is not being genuinely respected. It follows expecting an ill person to conform to some norm is also incompatible with true empathic care.

I have argued if we feel genuine empathic concern for someone this concern is not essentially passive. Indeed I would doubt anyone can feel genuine empathic concern for another if he does not also feel some urge for action. I have suggested above that the nature of some illnesses means the expression of this urge might be blocked. Nonetheless we must take some active steps to express our concern. The first step in expressing this concern is simply to make the ill person aware of our concern. We should directly express our sympathy. It is pointless expressing our sympathy to friends and acquaintances of the ill person whilst not directly communicating our concern to him for reasons such as embarrassment or fear.

I now want to consider further ways in which we might deal with any blockage of empathy in our dealings with chronically ill persons. First we must consider the causes of this blockage. This blockage in empathy may have two causes. The first cause is simply the physical nature of the illness. We are for the most part unable to react in a meaningful way to alleviate the physical nature of the illness. However it might be thought we can nevertheless express our concern by actively helping the ill person. I will now argue even if such concern is genuine, and I believe in most cases it is genuine, that nonetheless such unilateral help is sometimes both ineffective and unwanted. It is argued by Atkin’s that those of us in good health cannot truly imagine what it is like to be a chronically ill person (2000, Autonomy and the subjective character of experience, Journal of applied philosophy 17(1)). It follows if we accept a phenomenological account of illness that we cannot easily and never fully understand the needs and fears of a chronically ill person. We may of course imagine what it would be like for us if we suffered from the same illness. It follows epistemic ignorance also blocks our urge to act damaging our natural empathic concern. It might be argued any care is better than no care and that we should care for the ill person in the way we feel is best. Such an attitude to me seems to be both a lazy and arrogant attitude. It seems to me to be a lazy attitude because with dialogue we might become more fully aware of the ill person’s needs and fears. It follows if we are to offer genuine empathic concern rather than lazy partial empathic concern that we must engage in a dialogue with the ill person. However Carel points she “is not any obligation to anyone to engage in conversations about my illness or oxygen”, page 45. Carel is of course correct as any forced attempt to engage in dialogue would not see the ill person as someone who can make his own decisions and as a result would fail to respect his autonomy, as argued above. It then further follows any dialogue must be initiated by the ill person and not by our urge to act beneficently. It seems any dialogue based on empathic concern for an ill person should be an asymmetric one driven by the patient. Such a dialogue seems analogous to the one that Carl Rogers believed should take place between a counsellor and his client http://www.mythosandlogos.com/Rogers.html Rogers believed such a dialogue should have three essential elements; it must be genuine and involve both acceptance and understanding. Our relations with an ill person must be genuine. We must make him aware of our sympathy as I have argued above. We must also accept that the ill person will initiate and lead any dialogue that takes place. Lastly if we are to offer genuine empathic concern we must try to understand his worries and concerns.