In the article, Emily Collis and Katherine Sleeman argue that informed consent is “a fundamental ethical principle” – in England, General Medical Council guidelines state that information should only be withheld from terminally ill patients if it is thought that giving information will cause serious harm.
Accurate and complete information is necessary for patients to be able to make decisions about their care. Also, if you are unaware that you are dying, are you going to be prepared to think about and make decisions on advance care planning, where you wish to die or what will happen to your family after you are dead?
The authors argue that the key consideration for doctors is not whether patients are informed that their disease is incurable, but how this information is communicated. They say that even if the prognosis can never be accurate, patients should be told that their illness is progressive and incurable.
They conclude by saying “breaking bad news is challenging in any context, but the consequences of neglecting this duty may directly affect the trust between doctor and patient, the patient’s autonomy, and ultimately his or her quality of life.”
Leslie Blackhalls argues that patients do not need to be told that they are terminally ill, but does not support lying to patients.
She highlights the problem of defining what we mean by ‘terminal prognosis’ – “Are patients terminally ill when they first develop incurable cancer… only when their functional status starts to decline and they develop more symptoms, or only when they are bedbound and unconscious?”
Leslie argues that patients do not need to be told their prognosis is ‘terminal’ before they can make informed decisions about their care. She also argues that it is rarely the case that patients have a simple choice between therapy that will prolong their life and therapy directed at comfort.
She concludes: “This is not an argument for deceiving patients, or for reverting to a paternalistic mode of care,” and says that patients can make informed decisions if they are told about the benefits and side-effects of available treatments, what medical care can do (and, presumably what it cannot do) and what may happen as the illness progresses.
Emily and Leslie were both guests on the BBC Radio 4 programme ‘You and Yours’ on Monday which also highlighted the importance of patient preference. The programme revealed that, according to a survey for the Dying Matters Coalition in England, 85% of people would like to be told if they were close to death.
The subject of patient preference was also highlighted during a #hpmglobal tweetchat on the debate. Participants highlighted other studies which have indicated that the majority of people would like to know if their condition is terminal, but suggested that it is still important to consider an individual’s preference, and ask them how much they would like to know.