• CLINICAL NEUROLOGY

The Iceberg1 is a powerful book by the artist Marion Coutts about her husband Tom Lubbock, a well-known art critic. In 2008 he had a seizure and was found to have a brain tumour. At first this responded well to surgery and radiotherapy, but in 2010 it recurred, and he died in 2011. The main focus of the book is the effect of the diagnosis and progressive symptoms on their relationship with each other and with their 18-month-old son.

We discussed the many practical clinical lessons from this book. The importance of good communication, a theme touched on in previous book clubs, was again underlined. After one clinical encounter, the author and her husband could remember only the doctor's unfriendly manner rather than what she had said. This is contrasted with an oncologist who had an open, unrushed and trusted approach: “Our dialogue with Dr B is unlike any other we have. Something different from a friendship, it is sudden, expedient, contingent yet wholly actual. This is no small comfort”.

The central theme of the book is Tom's progressive dysphasia, leaving him eventually with only the “connective tissue of dialogue”. We discussed the poignant contrast between the gradual erosion Tom's language occurring just as their son is learning to speak. The couple find strategies to get around his dysphasia, and to communicate with each other. We reflected upon how using a different strategy (for example writing, or drawing) and taking time can help people with expressive dysphasia communicate.

The book illustrates the wider effect of a serious diagnosis on a patient and their family. We discussed the difficulties that Marion faced as a carer, and simultaneously as a wife and mother, trying to provide their son with as normal a life as possible. In some ways the disease caused more suffering for the family members than for the patient.

The Iceberg was a timely read for our Book club, having recently read Being Mortal2. The book illustrates the couple's shifting perspective from treatment and cure, towards the aim of achieving a good death, which had been the focus of Being Mortal. In a touching section towards the end, Tom wished to visit a Cézanne exhibition at an art gallery, despite being an inpatient. The nurses helped Marion to plan this. This was very important for them both, and despite her description as a “purely recreational and ambitious project”, it made a big difference to their quality of life that they could achieve it.

Tom was finally transferred to a hospice. This was serendipitous since, while looking at nursing homes, Marion passed a sign for a hospice and visited almost without thinking. Having told the hospital staff that she wanted Tom to go there, they organised it for her. Tom spent his final days there, surrounded by his family—they were all relieved and it felt like home. We were struck by what can be achieved for someone approaching death, by altering priorities towards their comfort, and spending their final days in the way that they would wish. This was an illustration of a good death, and we could recognise the difference this can make to a family as well as to the dying patient.

Our Book Club members agreed that The Iceberg is not an easy read, but felt it was useful in highlighting the benefits of a good death, the impact of a serious diagnosis on family and carers, the central importance of language, and the lasting effects of a doctor's attitude and behaviour on our patients.⇓

• Download figure
• Open in new tab
• Download powerpoint

Figure 1

Cover of The Iceberg

source: https://d.gr-ssets.com/books/1431341694l/25520517.jpg.