Do patients need to know they are terminally ill? Yes
Do patients need to know they are terminally ill? No
The British Medical Journal recently published two articles debating whether patients ‘need to know’ whether they are terminally ill. Collis and Sleeman argue that patients should be told, to enable them to exercise choice at the end of life, while Blackhall maintains that patients do not necessarily need to be told, as the focus should instead be on providing them with excellent care. At present, General Medical Council Guidance suggests that a patient should always be told, unless to tell them would cause greater harm. This harm is defined as being ‘more than just becoming upset’. The GMC also recognises that to foster doctor-patient trust, doctors must, as an overriding duty or principle, “be honest and open and act with integrity”.
In a modern state, we expect to make our own decisions. Personal autonomy and self-determination have become an integral part of our society. No more do we accept state or authoritarian imposition of religion or language, for example. Reflecting this, one of the fundamental principles of modern medicine is the principle of ‘informed consent’; that is that a patient must have a ‘clear appreciation and understanding of the facts, implications, and future consequences of an action’. In the absence of the principle of informed consent, a patient would hold no control or decision making power over their health and healthcare; treatment decisions could be made for them. Conversations about treatment options or potential side effects need not happen.
As Collis and Sleeman assert, the principle of informed consent “is no less relevant for a patient with terminal illness, for whom an awareness of the incurable and life limiting nature of their underlying condition is essential to decision making.”A patient’s autonomy and control would be stripped from them should doctors choose not to inform them that they were terminally ill.
I take issue with Blackhall’s contention that “insisting on prognostic disclosure to facilitate ‘patient choice’ about end of life care is a failed model for medical decision making that creates more suffering than it relieves.” Conversely in fact, failure to disclose a patient’s terminal status simply robs them of the opportunity to express a choice and to have their wishes followed. A patient who is not told they are terminally ill may die intestate, may die in a place not of their choosing, may have decisions about the giving or withdrawing of treatment made without their input. Patients would be denied the opportunity to make an Advance Decision or Lasting Power of Attorney which would ensure their end of life wishes could be followed. Not only that, they may miss an opportunity to say goodbye to their loved ones, to appreciate their last weeks or months, and even to come to terms with their own approaching death. Blackhall argues that the label ‘terminally ill’ causes anxiety and stress to patients and families, but surely that anxiety and stress is hugely amplified when the patient’s health declines to a point where they and their family may realise death is imminent but may not have time to come to terms with this or to put in place an Advance Decision or Lasting Power of Attorney.
A position such as Blackhall’s would also make it essentially impossible for doctors to fulfill their duty to act in patients’ best interests. ‘Best interests’ encompasses more than medical best interests, but a doctor who does not know his patient’s wishes (because the patient isn’t aware they need to make or express an end of life choice)cannot meaningfully engage with the patient’s best interests.
While I concur with Blackhall that a strong focus should be placed on excellent care, I cannot accept that this should be at the expense of patient autonomy, choice and control. For some, ‘excellent care’ might be palliative, for others it might be investigative or life – prolonging. The key component, however, is that it should be the care of the patient’s choosing.
 BMJ 2013;346:f2589 doi: 10.1136/bmj.f2589 (Published 24 April 2013)
 BMJ 2013;346:f2560 doi: 10.1136/bmj.f2560 (Published 24 April 2013)