Palliative care and communication: Experiences in the clinic

Archives

Book Review

Palliative care and communication: Experiences in the clinic

Anne-Mei The (translated from the Dutch by Robert Pool)

ISBN: 0-3352120-5-0 2002 254 pages Buckingham, UK: Open University Press

Katrina Breaden
Department of Palliative and Supportive Services, Flinders University, Adelaide, SA

Even with the anti-smoking campaigns that constantly bombard out daily lives, lung cancer features less in the media than other cancers such as breast cancer. Lung cancer is not a newsworthy or a glamorous disease. People who are diagnosed with small cell lung cancer, a subgroup within the types of lung cancer, have a particularly poor prognosis. A person who has only limited disease at diagnosis might hope to survive for approximately 18 months, while for those who present with extensive disease, the figure is barely a year (Harnett et al 1999). Due to the incurable and aggressive nature of small cell lung cancer, palliative care is often involved as the disease progresses.

Anne-Mei The's experiences within a lung diseases clinic over a five year period form the basis for the book. Within it she relates the results of an ethnographic study in which she followed 30 people diagnosed with small cell lung cancer during their visits to a special lung diseases clinic, from their diagnosis until their death. The impetus for the research was her observation that people diagnosed with this disease expected that they would recover and this optimism was especially notable during remission. They really did believe that they would get better. Given the statistics on survival mentioned above, long term recovery is unlikely. What was going on during the interactions between the specialist and the person concerned that could have led to such 'unjustified optimism?' In an attempt to answer this question Anne-Mei sat in the clinic and talked with and observed the participants in her study. She also followed them into the consultations with the specialist and onto ward rounds and during case conferences.

She discovered that on the whole specialists did convey the bad news about disease survival, yet it was a bad news that was given over time and not as a single all encompassing event. The terminal nature of the disease was revealed in small blocks of information, small enough for the person receiving the bad news to be able to manage without becoming completely overwhelmed. At each significant event in the disease trajectory, the specialist took advantage of the interview to talk to the person about their short term outlook. Anne-Mei found that the talk of the long term was usually avoided. The people themselves developed their own view of what the future held for them and did not seem to want to have it explicitly spelt out.

The book contains five sections relating to the progress of small cell lung cancer and its treatment. The first part confronts the crisis that the diagnosis and prognosis brings for the person and their family. In the second section the treatment phase begins and the sense of optimism for cure grows. People have reason to feel hopeful, for after all the cancer does appear to shrink on X-ray. Recurrence is the content for the third section during which optimism wanes as the person begins to realise that the cancer has returned in spite of such a promising beginning. The specialist relates that recurrence is to be expected, it is a normal development. Because of the usually positive start to the treatment experience, many of the people opt to have further chemotherapy. Part four involves the final phase of small cell lung cancer in which the participants take their leave from those around them realising that their death is approaching. In this section, optimism continues to sit alongside physical deterioration. Part five outlines the conclusions and recommendations for further study. Fear, anxiety and sadness are the constants throughout the whole experience as are the contrasting stories of two men, both of whom are followed by Anne-Mei from their diagnosis until after their funerals. These two stories represent the stories of many of the people that she interviewed.

I found the book to be extremely readable and it would appeal to a wide audience, from health care professionals to the lay public. As a teaching tool, it provides insight into the difficult area of limited prognoses and communication issues in people who are approaching the end of their life. It also sheds light on to why some people who live with a life-limiting disease seem to have a sense of optimism in the outcome of their disease.

The strength of this book lies in its readability and its methodological transparency. Anne-Mei's involvement in the research process is clear and in the epilogue she talks about the emotional nature of the bond she developed with many of her participants. This bond is about being human in situations that many of us would find difficult. I was moved by her stories and found commonalities within the book with my own experiences as a palliative care nurse. Her study extends our previous knowledge about informed consent, the nature of choice in life-limiting illnesses and it challenges the notion of the rational autonomous patient in charge of their own destiny.

This book will be of enormous value to health care professionals and researchers in the field of palliative care and it makes a valuable contribution to the sociology of health and illness.

Toggle references