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Do patients need to know they are terminally ill?

Do patients have a right to know whether they are terminally ill? Or should this be a matter at the discretion of their doctor?

In this week’s BMJ, experts debate whether patients need to know they are terminally ill.

Emily Collis and colleagues at the Central London Community Healthcare NHS Trust say that decision making can only be ethically sound with a fully informed patient, saying “accurate information enables patients to make informed, realistic choices and helps achieve patient preferences of care.”

They point to General Medical Council guidance stating that information should only be withheld from terminally ill patients if it is thought that giving information will cause serious harm, specified as “more than becoming upset.” And if information is withheld, the reasons must be justified, documented, and reconsidered at a later date.

Therefore, the key consideration for doctors is not whether patients are informed that their disease is incurable, but how this information is communicated, they argue.

They believe patients “should be given the information they want or need in a way they can understand” and “ideally these conversations would occur throughout the course of the patient’s illness, enabling him or her to come to terms with the situation in their own time.”

They acknowledge that estimating prognosis “can never be completely accurate” but say this “should not obscure the clarity that the illness is incurable.” They add that no one can make decisions on behalf of patients who have capacity, and that unless a patient refuses information, withholding information at the request of a relative is not ethically justifiable.

“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,” they conclude.

But Leslie Blackhall from the University of Virginia believes that insisting on prognostic disclosure to facilitate “patient choice” regarding end of life care “is a failed paradigm for medical decision making that creates more suffering than it relieves.”

She thinks the concept of “terminal illness” is not clearly defined and that prognoses can never be certain. For instance, she asks, does telling someone that they are terminally ill mean telling them how long they have to live (hard to know for any individual)? Does it mean telling them that they will eventually die (true for all of us)? Does it mean telling them there is “nothing we can do” (never true)?

This lack of precision … “indicates an underlying failure of the medical profession and wider culture at large to consider how the fact of human mortality should be accounted for in the practice of medicine.”

The real question, she says, is not whether patients should be told that they are “terminally ill” but how can we provide excellent care to patients with incurable, progressive illnesses?

Blackhall believes that to make decisions about care, patients with life limiting illnesses do not necessarily need to know how long they have to live or be informed when they pass some ill defined threshold of “terminal illness,” or choose to accept death. Instead, she says, they need “to understand the limitations of disease modifying therapy for their condition; what medical care can do for this disease; what side effects treatments might have; and what may happen as the illness progresses - or to delegate that task to a trusted surrogate.”

“This is not an argument for deceiving patients, or for reverting to a paternalistic mode of care. On the contrary, it is an argument for honesty about the efficacy of various types of medical care throughout the spectrum of life limiting illness,” she concludes.

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