The Following forms part of in service training given to the Netcare Rehabilitation Neuro Team
What do I do with a crying patient?
What patient experiences might contribute to distress?
“Critical illness leaves no aspect of life unchanged…Your relationships, your work, your sense of who you are and who you might become, your sense of what life is and what it ought to be – these all change and the change is terrifying. Twice, as I realized how ill I was, I saw these changes coming and was overwhelmed by them.”
“I couldn’t even read the newspaper headlines – the words made no sense, I enjoyed nothing and could not imagine anything that could make me happy again…when I was awake, I would cry or eat ravenously. The smallest task demanded great effort, and when I thought about killing myself, it loomed like an insurmountable mission.”
“The incremental demands of age, the steady pickpocketing that happens to us all, seemed like nothing compared to the robbery that had been performed on my body.”
When people become seriously ill and debilitated, they often feel isolated. They become part of a small group of “outsiders” for whom most of their suffering is silent, not understood or largely unnoticeable. Perhaps any actions that attempt to bridge this chasm, help give the suffering a voice, show concern or understanding or simply indicate that their suffering has not gone unnoticed – might be useful. Illness and injury often leave people feeling shameful, undignified, useless and helpless. People’s discomfort with open displays of emotion risks exacerbating these experiences. Shame and helplessness can happen on so many levels – due to changes in ability, roles in family or work, or difficulty with bodily functioning. Simply noticing suffering might help limit the sense of isolation.
“Human suffering becomes bearable when we share it. When we know that someone recognises our pain we can let go of it. The poser of recognition to reduce suffering cannot be explained, but it seems fundamental to our humanity.”
What are our responses to this distress informed by?
As professionals there is the expectation to always be in control, sometimes extreme displays of emotion are uncomfortable and even moving. In an attempt to stay in control, we often disregard the emotion. Although it is not the role of all practitioners to actively address the distress, the patient is likely to already feel like a ‘burden’, we should avoid creating the sense that they risk burdening us with unwelcome emotions.
A more traditional approach to psychology views Sadness as an internal condition to be “treated”. A person that displays symptoms of an internal condition is then referred to someone who can then “treat” this condition or psychological illness. It is arguable that such an approach sets the psychologist up as a kind of mental mechanic that repairs a break down in the mechanics of the patient. This potentially implies that emotional displays are a sign of a breakdown in the person and that referral to someone is confirmation of this. This often leads patients to portray their distress as having been a “moment of weakness” or a “bad day” that they are now over. Patients might then conclude that distress or helplessness in the face of illness/injury (even if momentary) might be inappropriate.
The ‘discursive turn’ in psychology has brought about a change in approach by counsellors to individuals’ illness experiences. The basic premise of this approach is to avoid objectifying the person being treated. People are not problems, problems are problems and the practitioner’s role is to help in “standing up to the influence of the problem”. Therefore, signs of distress are not necessarily symptoms of an internal condition but an invitation to participate in the patient’s illness experience. The focus is on connecting and caring rather than curing. Sadness due to loss is then not an inner mental state to be cured, but an experience that the patient (and those around him/her) is in a relationship with. The practitioner’s role is to notice this relationship, and show a curiosity for how the experience influences the patient’s life and where possible, how the practitioner can help limit this influence. To help achieve this, the therapeutic approach of ‘externalising conversations’ has developed (see below).
What might be helpful responses to this distress?
Occupational, Speech and Physical therapists are the first professionals a patient starts to interact with and build a relationship with. Patients often come to rely on these people to make them feel better. These therapists are therefore the foundation to the community of care that the patient is involved in, as they endure moments of distress.
In the context of neuro-rehabilitation, this might be a bit trickier as illness or injury might influence the ability to display appropriate emotion, comprehend ones own emotion or communicate emotion effectively. For myself, I try to distinguish between an observing self and a doing self. Neurological illness/injury can arguably influence both. The doing self is the one that is able to function effectively in the world and is always affected by neurological illness or injury to some extent. The observing self is the one that is able to understand what it is doing, how it is doing it, and clearly reflect on this. The observing self is influenced to varying degrees by injury or illness, and sometimes in very insignificant ways. From my [limited] experience, there is perhaps almost always an inkling of the observing self in the majority of these patients. It is this observing self that we need to invite into interaction and help feel noticed in moments of distress.
The following 8 basic steps might help to achieve this:
1. Listen to the patient. Rather than make assumptions, try and really listen for what the distress is attempting to communicate.
2. Listen to yourself. What is this doing to me and how do my own feelings influence my response? Often family members find the distress too painful and unknowingly disallow it.
3. Reflect thoughts, feelings and behavior. Find a way of letting the patient know that they are being heard and that you are making a genuine attempt at understanding them.
4. Affirmation & respect. Try to make the patient feel that their display of emotion is welcome and no cause for shame.
5. Empathic curiosity. Try to show a non-expert curiosity in what their distress is communicating.
6. Summarize/paraphrase. Give a sense of the overall impression that you have of the concern and clarify it with patient.
7. Make a plan. This step is not always needed and sometimes inappropriate, but in general, action will help make the patient feel more in control.
8. Offer Follow-up. Following up on their situation at a later stage will help let them know that you concern is authentic and that their openness is invited.