"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.

Patient Advocacy and Caring

In this posting I want to explore the idea of caring further in a nursing context. It is now common to talk of nurses of not just caring for a patient’s physical needs but also acting as the patient’s advocate, see for instance Brier Mackie (1). I want to question whether acting as a patient’s advocate might be inconsistent with a nurse’s key role as a professional carer. In order to examine whether this inconsistency is real I will also examine the concept of caring.

Brier-Mackie believes patients are often unable to verbalise their needs and it is one of the roles of a nurse to act as a patient advocate in order to enable them do so.

“Patients who are confronted with the autonomy/paternalism dichotomy are often unable to verbalize their needs and wants to their doctors either because they are intimidated by the doctors’ perceived power, or because the doctors lack the time to listen to their concerns” (2)

In many hospital situations the needs of the patient are simple and nurses have no reason to verbalise her needs, for instance in the case of a patient having a lumpectomy for breast cancer the patient’s needs are almost self-evident. Nevertheless there are some complex situations in which the patient’s needs are far from self-evident. Such situations are situations in which the patient must balance certain goods, such as the quality of life, with the length of life or the possibility of increased mobility with the risks and dangers of treatment. I agree with Brier-Mackie that in such situations a nurse has as the role to play by acting as a patient’s advocate helping him to verbalise his needs.

Any competent nurse will quickly learn to deal with the physical needs of her patients. However it is by no means so easy to verbalise someone’s non-physical needs. The first thing a good patient advocate must remember is that is she is acting as the patient’s agent rather than his representative. A patient’s advocate acting as his representative should represent her patient’s interests but representing a patient’s interests might be interpreted to mean the patient’s interests as seen by the representative. A patient’s advocate acting as an agent must present her patient’s views and these views might well differ from what the patient’s advocate would objectively regard as being in the patient’s best interests. Nursing is a caring profession and it might appear if a nurse acts as a patient’s advocate by vocalising a patient’s perceived needs, which she believes run counter to his best interests, then by vocalising these needs she is acting in a way which conflicts with the caring aims of her profession.

In order to examine whether the above conflict is real or a simply an illusion we must have a clear idea of what it means to care in a nursing context. I will now consider three suggestions as to the nature of caring in the context of nursing. Firstly in previous postings I have often referred to Harry Frankfurt’s ideas on ‘caring about’. Caring about to Frankfurt involves love and this in turn involves necessity. According to Frankfurt we cannot simply choose to love or whom we love. Nurses clearly do not love all their patients because illness might make some patients awkward and unlovable. It follows when nurses care for their patients they are not ‘caring about’ their patients on the basis of love. Secondly it might be suggested the way nurses care about their patients is defined by the practice of nursing. I am reluctant to accept this suggestion because caring constituted this way would focus directly on the needs of the practice and only indirectly on the needs of individual patients. For an excellent account caring without empathy see Havi Carel (3). For these reasons I believe any good nursing care must involve some empathic concern. What exactly does empathic concern mean? Empathy is defined by the Cambridge Online Dictionary as follows,

“the ability to share someone else's feelings or experiences by imagining what it would be like to be in their situation”.

Using this definition empathic concern might be defined as experiencing the patient’s feelings and acting in a way that attempts to alleviate these feelings. However if the way nurses care about their patients involves empathic concern for their patients a problem arises. Nurses might burn themselves out emotionally in some situations. For example nurses working on an oncology ward might be especially susceptible to this danger. I believe this problem with empathic concern highlighted by my example might be overcome by a limiting but not eliminating, empathic concern for patients.

However before considering whether caring, based on a limited or form of empathic concern, conflicts with a nurse’s role as patient advocate I must examine two problems associated with a limited empathic concern. Firstly if someone limits her empathic concern we might be concerned as to the genuineness of her concern. Indeed it might be argued that ‘limited empathic concern’ is a form of sympathy rather than genuine empathy. In order to address this concern we must consider exactly what I mean by limited empathic concern. Let it be accepted that empathy involves the ability to share someone else's feelings or experiences. Limited empathic concern doesn’t just mean sharing only some of someone’s feelings and experiences. Limited empathic concern cannot involve us in selecting certain feelings or experiences in a pick and mix fashion. Accepting this seems to mean we cannot exude empathy in a generalised way but can only feel empathy for someone or some people in a particular situation. In the rest of this posting when I refer to empathic concern I am referring to empathic concern in a particular situation. It seems to me if we feel ‘limited empathic concern for someone then we must share all of the feelings pertinent to her situation to some degree. Let it be accepted feeling ‘limited empathy’ for someone must involve feeling all the appropriate feelings to her situation to a limited degree. It might be objected to the above if the feelings we share are too limited that ‘limited empathic concern’ is not genuine a form of empathic concern. This may well be true in extreme cases but I would argue all empathic concern is to some extent limited. Consider the case of a mother who loses her child in a shopping mall it is certainly possible for a second mother to feel genuine empathic concern for the first. However I would question whether she shares the first mother’s feelings of panic and alarm to the same degree, her empathic concern is limited to some degree. For this reason I would argue the above objection carries little weight in most situations and that ‘limited empathic care’ based on feeling all the feelings appropriate to a situation in a limited way is a necessary element of genuine empathic concern in that situation.

I now want to argue that ‘limited empathic concern’ based on feeling all of someone’s feelings, pertinent to a particular situation, in a limited way is not a sufficient condition for genuine empathic concern. It seems clear to me genuine empathic concern for someone must include respecting her autonomy, see caring based solely one empathy . However if ‘limited empathic concern’ is a genuine form of empathy and it is based solely on experiencing all of someone’s appropriate feelings to some particular situation in a limited way then it seems to be possible both to care for someone in an empathic way whilst at the same time not respecting her autonomy. Human beings are not rational machines and have a large number of desires and these desires need not always form a consistent set. This might be especially true in the case of illness due to stress. Nevertheless most human beings, including patients, remain autonomous because they can rank their desires. This ranking does not mean someone must be able to give weights to specific desires. It does however mean an autonomous agent can unequivocally say if she desires both x and y and these desires are inconsistent that she prefers x or y. It follows if ‘limited empathic concern’ does not consider the way a patient ranks her desires it is a perverted form of empathic concern. It follows if ‘limited empathic concern’ is a genuine form of empathic concern that it must include both the carer experiencing all of the cared for one’s feelings, appropriate to the situation in a limited way, and being able to accurately represent the way the cared for one ranks her feelings or desires.

Accepting the above gives rise to the second problem connected to limited empathic caring. Is it possible to rank the feelings or desires of another? In what follows I will argue that ‘limited empathic caring’ is possible in practice but difficult to achieve. Firstly it might be suggested that a carer might experience the cared for one’s feelings in a way that is proportionate to the way cared for one experiences these feelings. It might then be further suggested if a carer experiences another’s feelings in a limited but proportionate way she naturally ranks the cared for one’s desires. My example of a mother’s empathic concern for a second mother who has lost her child in a shopping mall seems to support this suggestion. The extremity of the first mother’s feelings in this situation makes this ranking possible. This example is an example of an extreme situation and I believe it unlikely that in most situations a carer can naturally rank the desires of the cared for. However it seems to me that a carer might be able rank a cared for one’s desires in accordance with his ranking through dialogue. If empathic care must of necessity involve respecting autonomy then the purpose of such a dialogue must be the clarification of the cared for one’s desires and feelings. It is of course possible that in some situations this might also involve helping the cared for one clarify her own desires. Such a clarification should enable the carer to rank the cared for one’s feelings in a way that is proportionate to the way the cared for one experiences these feelings. It should however be noted there is great danger attached to such a dialogue. It might be all too easy for the carer to pay attention to the cared for one’s interests rather than help her clarify her feelings and desires. Nevertheless it does seem this second problem can be overcome with care and that limited empathic care is possible.

In the light of the above it is possible to answer the question as to whether a nurse acting as a patient’s advocate, by vocalising a patient’s views which she believes run counter to his best interests, might find herself in conflict with the caring aims of her profession. I have accepted that good nursing care involves limited empathic concern. I have argued limited empathic caring involves the carer experiencing all of the cared for one’s feelings, appropriate to the situation in a limited way. I have also argued limited empathic caring involves respecting the cared for one’s autonomy. If my arguments are accepted and it is also accepted that good nursing involves empathic concern then I can see no reason as to why a nurse’s role as patient advocate should conflict with the caring aims of her profession.

1. Brier Mackie, 2001, Patient Autonomy and Medical Paternity; Can Nurses help Doctors to listen to Patients? Nursing Ethics 8(6),
2. Brier Mackie, page 515.
3. Havi Carel,2008, illness, Acumen, p 38.