Terminal Illness, Would You Want To Know?
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If you were considered "terminally ill" would you want to know?
Having trouble answering the question? Don't worry experts who set out to determine the health effects of being given a terminal prognosis were left at odds over the matter as well.
While researcher Leslie Blackhall believes "the concept of 'terminal illness' is not clearly defined and that prognoses can never be certain," fellow researchers Emily Collis and Katherine Sleeman assert "that decision making can be ethically sound only with a fully informed patient."
"This is not an argument for deceiving patients, or for reverting to a paternalistic mode of care," Blackwell said.
"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."
Blackhall, head of palliative care at the University Of Virginia School Of Medicine, raises initial concerns with the word terminal. She said "disclosing a 'terminal' prognosis is impossible because we do not have a clear definition."
Another complaint Blackhall brings to light is that full disclosure of an illness will not help patients make better choices about the care they wish to receive. Choices for prolonging life or comforting those who have accepted death more often than not have an adverse effect compared to the intention.
Instead of exploring the best way to inform a patient on the severity of their condition, Blackhall says doctors should be more focused on what happens in later stages of the disease and how they can get the right kind of treatment.
On the other hand, Collis, a palliative medicine consultant with the Pembridge Palliative Care Center in London, and Sleeman, a clinical lecturer in palliative medicine at the Cicely Saunders Institute, subscribe to the notion "Knowledge gives power."
Both Collis and Sleeman believe "patients have the right to make informed decisions about their healthcare." In order for patients to practice informed decision making, it is essential they have received the correct information.
According to Collis and Sleeman, "Accurate information enables patients to make informed, realistic choices and helps them to get their preferred care."
Simply telling the patient their condition is incurable does not suffice. The information must be laid out in a way that the patient can understand what they are being told.
Finally, Collis and Sleeman flip the argument that receiving news of a terminal illness can diminish all hope of beating the disease in its head. Instead, they claim fostering false hope can in turn promote false expectations.
Both arguments can be found in the April 24 edition of BMJ.