Following a diagnosis, the patient and relatives may have different ways of absorbing and coming to terms with the news. They may not know what to say to each other due to the immediate shock, and therefore talk to each other in superficial terms or simply avoid the news and its implications as though things are as they were before. Attempts to retain a sense of ‘normality’ by denying the reality of what is happening may be helpful to begin with, but can usually only be sustained short-term. It is normal to experience a degree of coming and going of feelings, as serious and painful conversations should always be entered into carefully, and then stepped back from in order to allow time to be absorbed and reflected on afterwards.
Regardless of future options and scope for remaining hopeful, uncertainty and worry can be every bit as difficult to deal with as bad news and actual events. Exploring potential future scenarios - how we might deal with them and how they might make us feel is important. It is sometimes easier to do this with situations and problems in anticipation before they arise, than to leave them until later when they do. Clarifying options is also empowering because it encourages sharing and participation.
If challenging situations and set backs do occur later, it is possible to refer back to earlier conversations. A common problem when needing to initiate a conversation on a difficult subject is how to get started. Being able to refer back to a previous conversation can be helpful - “Do you remember you said that if this happens, you might feel such and such? How are you feeling about it now?” This can be a useful starting point.
The diagnosis of a life-threatening illness can divide and isolate people, and it is important to bear in mind that ‘communication’ means different things to different people, especially in times of uncertainty and crisis. Someone might communicate in the hope of sharing feelings and connecting emotionally, and may talk about ‘sharing the emotional burden’ or the pain. Someone else may prefer to talk more about how to allocate practical tasks to keep normal life running.
Both approaches are necessary and valid, and it is good to be able to engage with both, but people may tend to one more than the other. This can give rise to misunderstandings, when one person possibly can’t see how the other can be so practically-focused, and the other’s more emotional focus is maybe seen as an unhelpful distraction. If barriers and misunderstandings like these do arise, words are sometimes unable to help. Eye-contact, touch and silence can then become valuable aspects of meaningful communication instead. It is also common for carers and relatives to repress their own feelings out of over-regard for those of the patient, as though they are the only person who can legitimately have and express their feelings. The reality, however, is that patient and the family are the same unit of care and everyone’s feelings and reflections are important. It is by sharing them that we can help each other to ease the emotional pain and feelings of isolation. Tears are often shed, and this is important because crying opens us up to being comforted, and also helps us to express and ease our emotional pain. Sometimes people mistakenly believe they need to be strong at all times for each other, but this can sometimes give rise to extra stress and can put more pressure on everyone. Tears give permission to others that its ok for them to cry too, and indicates we are open to be supported and reassured.
Openness and honesty are very important and these can be lost if we try to be too strong or appear to others as if we are coping too well. Not being afraid to show some emotion and weakness can have the effect of bringing people together at difficult times. It is also important to acknowledge that some feelings will not always seem helpful during difficult times. Anger and frustration are natural emotions but they are often difficult to express in a constructive way. People fall out and words can be said and then regretted later. It is a good idea for the patient and family to acknowledge that they are under an unusually high level of stress and worry. If emotions erupt and people fall out, this is sometimes only to be expected. We say things we don’t mean when we can’t feel the right words, or when someone is irritating us by not seeing things as we do. We criticise and scold someone even though we would prefer to be telling them how much we love them. Families often have long-standing “issues” which are manageable under normal circumstances, but which erupt in times of crisis. Misunderstandings can lead to falling out, but this also creates an opportunity to make amends and to reach a better level of mutual understanding. Forgiving and making up can help to remove barriers and obstacles. Having someone to talk to who is not a member of the family, such as a Macmillan nurse or Palliative Care social worker can be very helpful to clarify feelings and help facilitate helpful communication between family members during times of crisis. Be sensitive to the feelings of others, do your best to understand each other, and don’t be too hard on yourself when you get it wrong.
David McCracken – Palliative Care Team, Leeds Teaching Hospitals NHS Trust 15 December 2008