Skip to main content

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.

Comments

Popular posts from this blog

Prioritising people in nursing care.

There has been in recent years concern that care in the NHS has not been sufficiently 'patient centred', or responsive to the needs of the patient on a case basis. It has been felt in care that it as been the patient who has had to adapt to the regime of care, rather than the other way around. Putting patients at the centre of care means being responsive to their needs and supporting them through the process of health care delivery.  Patients should not become identikit sausages in a production line. The nurses body, the Nursing and Midwifery Council has responded to this challenge with a revised code of practice reflection get changes in health and social care since the previous code was published in 2008. The Code describes the professional standards of practice and behaviour for nurses and midwives. Four themes describe what nurses and midwives are expected to do: prioritise people practise effectively preserve safety, and promote professionalism and trust. The

The internet trails of Ants

Ants share, and they are built to do just that.  They walk and talk to cooperate in all they do.  Ants have two stomachs, with the second one set aside for storing food to be shared with other ants.  Ants get pretty intimate when meeting each other.  The ants kiss, but this kiss isn't any ordinary kind of kiss. Instead, they regurgitate food and exchange it with one another.  By sharing saliva and food,  ants communicate.  Each ant colony has a unique smell, so members recognize each other and sniff out intruders. In addition, all ants can produce pheromones, which are scent chemicals used for communication and to make trails. Ants are problem solvers.  We may recall the problems puzzles we were given as children. We look to see if the pieces will fit.  Jiz saw puzzles are much the same but with many contextual factors. First, the picture tells a story. Then, once we know what the image might be, it becomes easier to see which pieces to look for.  Ants lay down trails. Just as we f

The Thin End account of COVID Lockdown