December 6, 2021

Patients don’t know their life is ending – new study

A new study by US researchers suggests that advanced cancer patients have a very poor understanding of their own condition.

Doctors have clear ethical obligations to patients in an end-of-life situation. But what if those patients don’t realise they’re at the end of their lives?

A new study by US researchers suggests that advanced cancer patients have a very poor understanding of their own condition, and that they are typically in need of regular updates on their prognosis from doctors.

Dr. Holly G. Prigerson of New York Presbyterian Hospital worked with a team of three researchers to investigate how much terminal cancer patients understand about their own illness. The team interviewed 178 patients with advanced cancers whom oncologists expected to die within 6 months. Illness understanding scores were taken based on the patient’s acknowledgement of their terminal and advanced condition, and their expectation that they would live months instead of years. The results, published in The Journal of Clinical Oncology on Monday, were quite alarming.

“Results of this study demonstrate how poorly patients with advanced cancer understand their prognoses and how effective recent prognostic discussions are to improve illness understanding by patients… A small minority [5%] of patients accurately, and completely, understood the gravity of their illnesses…”

The authors observed that there is a need for doctors to provide patients with regular updates on their condition:

“These results highlight the need for timely (ie, current) prognostic disclosures to terminally ill patients who meet the criteria used for this study. The results also suggest that oncologists should discuss prognosis on an ongoing basis, and as frequently as appropriate, with their terminally ill patients. If this occurred, patients would likely have better illness understanding and, thus, make more informed decisions about their end-of-life care.”

Prigerson suggested that part of the phenomenon could be attributed to patient’s desire not to know about their condition.

“Our point is a lot of them don’t want to know, but they need to know basic information about the disease and illness and treatment options,” she told ABC News.

“It’s a difficult topic,” said Prigerson. “Have patients understand that, if they are being offered treatment, it’s not a cure and they really have months, not years, to live.”

Dr. Barbara Daly, the director of the clinical ethics program at University Hospitals Case Medical Center, said that some doctors speak in medical terms that can be confusing for a patient.

“It takes a high level of skill to talk to people … to present it in a way where it’s understandable,” she said. “Doctors … they literally forget how to talk like a normal person.” 

Only 5% of cancer patients understand their condition
Xavier Symons
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Creative commons
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advance directives
advanced care planning
clinical practice
end-of-life
end-of-life care