Reviews

Do we hear our patients? And would a patient's page help?

Today I spoke at a medical education meeting about a communication skills course I have been piloting for our senior house officers. Attendance has been patchy and poor. I wondered if the consultants were really supportive about releasing them from duties to attend the course. I tried to explain the importance of integrating both informative and receptive behaviours in the medical interview. Everybody knows that we need to give information accurately in ways that patients can understand. But how can you explain succinctly the importance of the receptive behavioursthat is, understanding what the patient and relatives are really concerned about . . .

My recurring nightmare last night was particularly vivid. Geoff, my partner, was lying in his hospital bed. But was it really him and was he alive or dead? The horror increased as Dr Harold Shipman came into the picture. How or why I don't know. It was a relief to wake up. The Shipman element must represent my continuing anger towards the doctors who treated Geoff. I have been meaning to write about this but lacked the courage. The nightmare has been the catalyst.

Geoff died from a brain stem lymphoma 18 months ago. It had remained undiagnosed until just a week before his death. He had been investigated and treated in hospital over a period of seven weeks.

How ironic that I had been asked to submit a proposal for teaching communication skills before he became ill. I knew these were important and relevant skills to promote. But little did I realise how important they would become to me personally.

Staff at this hospital displayed impressive informative behaviour. Optimism, some uncertainty, and a sensible methodical approach to the problem were evident. But I felt that little attempt was made to understand how Geoff was feeling. When he deteriorated and could no longer talk, I felt that my feelings and fears were ignored too.

Geoff began to smoke incessantly and continued to light up almost until the end. His burns were painless. The doctors disapproved, but they did not seem interested in discussing how else he might be helped. Isolation in the day room with his fags was Geoff's solace. I wheeled him out into the gardens as often as I could.

While everyone was waiting for the steroids to kick in my medical intuition made me pessimistic. He was plainly deteriorating rapidly so I stopped work. But what if I had not been able to see for myself the need to stay with him for those few brief final weeks? Nobody ever discussed his deterioration or prognosis. Diagnosis was all. Would the doctors have communicated differently with me if I had not been a doctor?

In such a hospital ward the fears and worries of the patients and their loved ones are enormous. Geoff heard the suicidal wishes, endless despair, anger, and frustration in the day roombut did the medical teams ever hear these? And if they did, would they have been able to address them appropriately. The task of responding to the patient's agenda in such situations is truly daunting.

I wonder whether the medical arrogance that I perceived was merely a mechanism to distance the doctors from our pain or from their sense of failure. Was it an act of self preservation? I can remember feeling ashamed that I was a doctor. It was what I perceived as a lack of compassion that was so shocking. The doctors seemed to be insulating themselves from their patient's suffering and in the absence of a cure seemed to feel that they could offer nothing. Of course, if they had been able to cure Geoff I would have felt differently, but most neurological diseases are not cured and patients suffer. Do we hear our patients' concerns? And if we don't, what can we do about it?

Geoff suggested a solution while he could still talk. He had been a journalist and loved to communicate. He told me how important he felt it was for the patient's views to be heard. He suggested that a patient's page be inserted into the clinical notes. On this page patients could write their agenda of ideas, concerns, and suggestions. The process of working out this agenda with them could develop doctors' communication skills and promote understanding so that problems could be openly discussed. Maybe this page could promote a more patient centred approachdoctors could address the patient's written agenda at the same time as the traditional medical agenda.

I think we need to listen and care more effectively. Talk of tasks, tests, and discharge dates is no longer enough.

Footnotes

If you would like to submit a personal view please send no more than 850 words to the Editor, BMJ, BMA House, Tavistock Square, London WC1H 9JR or e-mail editor{at}bmj.com

Jacqueline S Maxmin, general practitioner and vocational training scheme course organiser. 

High Wycombe