For the first time, a programme has been developed to help cancer patients discuss their condition with family, friends and colleagues. Dr Alexander Marmé from the University of Heidelberg, Germany, has based his new strategy on the one that is currently used to train doctors in communicating effectively with their patients.
The quality of life for patients with cancer is dependent not only on medical care but also on the psychological and social support provided by the people around them. "There are two major problems here: anxiety, enhanced by a lack of knowledge," explained Dr Marmé, speaking at the European Society of Medical Oncology Congress today (20 October 2002). "The patient is afraid of talking about their illness with relatives. They don't know how to deal with it. The lack of communication causes additional stress in personal relationships."
The five-step protocol, developed in 1998 by Buckman and Baile for doctors, improves the way in which they break bad news to their patients. A better understanding of the worries of an uncertain future benefits both doctors and patients. However, until now, there has been no similar programme for patients, who also have to convey distressing news to family, friends and peers. Dr Marmé established from a questionnaire and interviews with patients that this is a problem that requires attention. It differs distinctly from the communication between clinician and patient. For instance, when a patient is breaking bad news, emotional expression and body contact, the absence of 'professional distance' and specialist knowledge of the condition are all important factors.
Dr Marmé has now devised a protocol, known at GOALS, consisting of a one-day workshop. "It is about identifying the right place and the right moment to talk about these things when emotions are high." The GOALS programme consists of:
G Getting together: The time and space should indicate that this is an important conversation and should not be disturbed by daily life.
O Opening: Both sides should indicate that there is a need or a desire to talk.
A Acknowledging each others emotions: Sharing emotions is very important to support your relative.
L Learning about the disease and exchanging ideas where new questions might arise.
S Strategy to develop open discussion and arrange the next conversation.
Patients cope with cancer in different ways in different countries and, therefore, diverse cultural issues need to be taken into account. In Muslim communities, for example, the husband would be the one to convey the news that his wife has cervical cancer. "We need a lot more information from ethnic and religious groups to work out the best communication methods for them," said Dr Marmé. To this end, he also plans to set up focus groups to establish major differences in approach between USA and Europe.
As a result of a questionnaire answered by 58 patients, Dr Marmé has found that communication with their partners is a major source of support for coping. Though most patients think that communication with their partners is working already quite well, a majority of patients think that it could be improved by communication training. Well over half (61%) of the patients thought that a workshop for both patients and their partners would be the most helpful approach. Forty percent of the patients would participate and one third thought that their partners would participate as well. Almost one quarter of the patients did not know whether their partners would participate.
"These data indicate that a communication workshop for patients and their partners should be initiated and subsequently evaluated for its effect on the quality of life of cancer patients," said Dr Marmé.
The first workshops will be held at the University of Heidelberg in the near future. "Our programme aims to break down the barriers and encourage people to discuss their cancer openly and appropriately."