Why I wrote… Handbook of Communication in Oncology and Palliative Care

Communication is at the heart of our being – we communicate in a myriad of ways. The majority are non-verbal but even for the verbal aspects of communication – to paraphrase the old song – ‘it's not what you say, it's the way that you say it’. ^* So if patient–clinician relationships are to be improved and if patients are to feel able to safely express their thoughts, then communication in clinical practice is key to all that happens.

Perhaps the whole issue of communication has been heightened for me with the relentless pressure for assisted suicide and euthanasia. Having taught communication skills to doctors on our Cardiff University Palliative Medicine Diploma/MSc course for over 20 years, it is easy to end up feeling one has seen it all. But perhaps the overriding influence on me has been the realization that in the doctor–patient relationship the power differential is there, no matter how much the doctor wants it not to be, no matter how much the doctor tries to empower the patient. Difficulty also arises when the doctor leaves so much up to the patient that it feels as if the decision-making has been dumped on the patient or relatives.

It is not uncommon for patients to say, ‘What would you do if you were me?’ Of course, no one else is ‘them’ and at the end of the day the only person who lives with – or does not survive – the consequences of every clinical decision is the patient, with their family also secondarily benefiting or suffering from the outcome. So whenever a patient is being persuaded to undertake a recommended treatment or is making a decision to refuse it, the key factor is not the scientific evidence in favour of or against the intervention, but the way that information is communicated. And it has been my fortune – and misfortune – to witness this.

Many years ago as a junior doctor in anaesthetics, I was allocated to the ‘max–fax’ list. Patients with maxillofacial tumours were undergoing what in those days were termed ‘commando’ operations – essentially most of one side of the face was removed with massive grafting procedures in an attempt to remove the entire tumour. As an undergraduate, I never saw these operations, never knew they existed. Now I was suddenly part of a team doing them – they were awful and I wanted to scream out ‘tear up your consent form, say no now’, but as the most junior I lacked the courage to fully research the outcomes and to mount a single-handed challenge to the whole system of treatment as it was currently recommended. All the surgical team thought they were acting in the patient's best interest, but the price paid in terms of massive trauma, disfigurement and subsequent survival seemed too high a risk to take. Yet, these patients had all consented, been ‘counselled’ about the surgery and I was never aware of them post-operatively taking action against those who had recommended this route of treatment. But I still feel pangs of guilt at not having at least challenged the procedure that has fortunately now been succeeded by much more sophisticated and tissue-conserving approaches.

The impact of communication really came to me when I listened to bereaved parents. The Compassionate Friends, who describe themselves as the group that no one wants to join, allowed me to hear the experiences of how many were told of their child's death. Over and over again the awfulness of the news was tempered by the way it was given. An uncaring attitude compounded their pain a million times over; comfort was immense when the person breaking the news showed they cared – ‘The policeman cared so much he had tears in his eyes’. The impact of communication on the lives of those tragically bereaved in such an untimely way was so stark that I wrote ‘Your child is dead’. ¹

The ongoing major influence came through working with dying patients. Listening to their fears usually based on what they had witnessed first hand in others in the past or had seen and heard through the media made me realize the acute vulnerability of the terminally ill to any inference they glean from clinicians.

The classic situation arises as media pressure mounts to suggest that the dignified way to die is by assisted suicide, that somehow to die naturally of disease is an inferior death. Phrases such as ‘Just give me something to end it all’ or the pitiful plaintive cry ‘You wouldn't let a dog live like this’ are expressions of deep fear and anguish – and the way the clinician responds will influence the patient profoundly. I have watched it directly and through recordings that our students have made of their consultations. The clinician who responds by exploring what it is that makes today so terrible, eliciting the patient's fears and who then realistically plans for the future can inspire hope. The clinician who processes a request for death, while acknowledging the reality for the patient, confirms the bleakest of outlooks devoid of hope. And in watching such conversations I have repeatedly been struck by the depressive nature of some clinicians, by the vibrant realistic optimism of others and by the effect on a patient of the messages each communicates.

So when asked to co-edit a book on communication in oncology, this provided the opportunity to pull together all aspects of communication, its teaching, the needs of different groups and the complexities we all encounter at times as clinicians. In a world of evidence-based decision-making, the evidence about all aspects of communication is crucial to widening understanding and awareness. I hope this text will influence for the better. At the end of the day, we should all strive to leave the world a little better for our efforts than we found it.

Handbook of Communication in Oncology and Palliative Care. Edited by David Kissane, Barry Bultz, Phyllis Butow and Ilora Finlay

Oxford University Press. 2010. ISBN13: 9780199238361

£65.72 hardback. 772 pages