By Mohammad S Razai
The morning she was told about the recurrence of her breast cancer, Mary1 remembers the framed pastiche of Monet’s Water Lilies hanging on the wall of the clinic, the pungent odour of disinfectant and the rustle of pages fanning as her oncologist turned them, deftly and effortlessly. With an acute sense of awareness, she was waking up to the fact that she did not have much time left and had better make use of it.
The stillness of sterilised air was getting unbearable. She looked him in the face and held his gaze: ‘How much time do I have?!’, ‘Well, um…let’s focus on the next stage’ came the circumscribed response and then silence.
Mary’s experience is not unique. There is an abundance of evidence that doctors are not good at honest and open disclosure of prognostic information. When faced with the difficult question most prevaricate thereby leaving the patient unable to make considered informed decisions, uncertain of the journey ahead and psychologically distressed. This is in contrast to our willingness and preference to disclose diagnoses such as cancer openly.
The answer to this apparent paralysis has been coming forth over the last few decades. In 1990 Delvechhio Good observed an inherent tension amongst doctors in ‘how much and what to tell patients about their disease and treatment, in particular their prognosis’. Physicians therefore used various ways to control and manage the demands for prognostication in order ‘to maintain and instill an optimistic attitude in their patients’. This palpable tension between a sense of duty towards open communication and preserving and instilling hope has continued in modern medical practice. This is not just the case in oncology but across specialties, doctors rarely initiate conversation on prognosis and seldom gave complete prognostic information.
The issue is not about the ability to predict the future. Even the most prescient of us in the best of circumstances simply do not know what exact course a disease will take in a particular patient let alone how long they have got to live. It is about the nous to engage with concerns and unspoken fears. Patients are looking to us to provide perspective, see the bigger picture, make sense of it all and communicate honestly.
Our inability to negotiate a balance between sustaining hope and truthful communication is rightly criticised as neither advancing medical knowledge nor the care of seriously ill patients. But what is to be done in overcoming this widespread reluctance and circumvent their consequent emotional difficulties.
Drawing from my own experience and study, the pivotal role of good communication skills cannot be overemphasised. However, this on its own is not sufficient. A genuine person-centred approach that establishes and maintains rapport with compassion and understanding is what patients like Mary need and expect.
When she left the clinic in sweltering July heat, it was not death that bothered Mary – ‘because when it stares me in the face, I will be ready for it’. What overwhelmed her was ‘not knowing when and how it will come, because I need to constantly re-arrange my mental furniture’.
- To maintain confidentiality, all identifiable information has been altered
Mohammad S Razai was born in Afghanistan, trained at University of Cambridge, and is an Academic Clinical Fellow in Primary Care at St George’s University. He has substantial global health experience and is passionate about improving quality and safety in healthcare.
Competing interests: None declared