Physicians debate whether patients need to know they're dying

April 28, 2013 by Melissa Healy

In the days when American physicians dispensed oracular commands and their judgments were rarely questioned, a doctor could take it upon himself with few ethical qualms to keep from a patient the bad news of a terminal diagnosis.

For better or worse, those days may be well behind us. But physicians have not ceased debating one of the stickiest and most universal ethical quandaries of : How, when and why does one inform a patient that he or she is dying? The latest evidence of that ongoing discussion was published Wednesday in the British Medical Journal.

The latest question in the journal's "Head to Head" feature, "Do need to know they are terminally ill?," essentially pits one side's reasonable arguments that "we're all dying" and "you never really know when and of what a patient will die" against another side's equally compelling assertions that "knowledge allows better decisions" and "a patient can still have hope - to live to see a daughter married or achieve a cherished goal or to die a peaceful death at home."

Either way, the two sides in BMJ's debate appear to converge on one key rule: Patients whose lives will probably be limited or ended by a disease deserve a forthright explanation of what treatment is available and what it probably would, and would not, accomplish if undertaken. Given that this is a matter of , the difference seems to come down to how forcefully a doctor should press the point when a patient seems unwilling to face the realities of his or her diagnosis.

The debate is a sign of the times. The authors on both sides of the BMJ debate - yes, a patient needs to know he is terminally ill, and, no, she does not - are palliative care specialists: Often flanked by and nurses and pastoral caregivers, these physicians work to maximize the "quality of life" of seriously ill patients. As this new medical specialty gains a foothold in hospitals throughout the United States, it has brought a new focus on the value of caring for, not curing, patients with life-limiting chronic illnesses (including diagnoses such as cancer, emphysema, heart failure and complicated diabetes).

Because many in palliative care come from the hospice movement or are affiliated with hospice as well, these specialists tend to be on good terms with the reality that all patients eventually die. But they also know that many patients may have a good deal of life left to live. Hence, the debate over telling patients they are terminally ill.

Many palliative care doctors are firmly convinced that when patients know that cure is no longer possible, they will generally choose to forgo costly and invasive tests and procedures, make the best of the time they have left and eventually die in the peace and comfort of their homes, which is what most Americans at least say they want. By this logic, ensuring the patient knows she has a terminal illness is the first step in seeing that her wishes will be honored and the quality of her life remaining will be maximized.

"Knowledge is power," write Drs. Emily Collis and Katherine E. Sleeman, both palliative care specialists in Britain's National Health System.

But other palliative care physicians focus on the surprising finding that "terminal" patients actually live longer, on average, when they get palliative care, possibly because they get off the risky and intensive "curative treatment" treadmill and focus on comfort and .

By this logic, it may be more important to tend to a patient's comfort than to jam down her throat false certainties about the time or cause of her eventual death.

"Does telling someone that they are terminally ill mean telling them how long they have to live? (hard to know for any individual)," writes Dr. Leslie J. Blackhall, a specialist at the University of Virginia School of Medicine. "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)?" Blackhall writes. And at exactly what point in a protracted illness for which there is little prospect of a cure does a physician declare a patient "terminal," she wonders.

It may surprise readers to know that in Britain's health care system, the physicians' regulatory body tells doctors that "information should be withheld from terminally ill patients only if it is thought that giving information will cause serious harm, specified as 'more than becoming upset.'"

Explore further: Involving other providers in palliative care may help meet growing demand

Related Stories

Involving other providers in palliative care may help meet growing demand

March 6, 2013
As baby-boomers age and the number of people with serious chronic illnesses continues to rise, the demand for experts in palliative medicine is sure to outstrip the supply, according Timothy E. Quill, M.D., professor of Medicine, ...

Prohibitive reimbursement may restrict hospice enrollment in patients requiring high-cost care

December 4, 2012
In the first national survey of enrollment policies at hospices, researchers from Mount Sinai School of Medicine and Yale University have found that the vast majority of hospices in the United States have at least one enrollment ...

Physician approaches to palliative sedation

February 13, 2012
Physicians take two types of approaches to palliative sedation, either mild sedation or deep sedation from the start, and it is important to understand the reasons behind each approach, states an article in CMAJ (Canadian ...

Recommended for you

Americans are getting more sleep

January 19, 2018
Although more than one in three Americans still don't get enough sleep, a new analysis shows first signs of success in the fight for more shut eye. According to data from 181,335 respondents aged 15 and older who participated ...

Wine is good for you—to a point

January 18, 2018
The Mediterranean diet has become synonymous with healthy eating, but there's one thing in it that stands out: It's cool to drink wine.

Sleep better, lose weight?

January 17, 2018
(HealthDay)—Sleeplessness could cost you when it's time to stand on your bathroom scale, a new British study suggests.

Who uses phone apps to track sleep habits? Mostly the healthy and wealthy in US

January 16, 2018
The profile of most Americans who use popular mobile phone apps that track sleep habits is that they are relatively affluent, claim to eat well, and say they are in good health, even if some of them tend to smoke.

Improvements in mortality rates are slowed by rise in obesity in the United States

January 15, 2018
With countless medical advances and efforts to curb smoking, one might expect that life expectancy in the United States would improve. Yet according to recent studies, there's been a reduction in the rate of improvement in ...

Can muesli help against arthritis?

January 15, 2018
It is well known that healthy eating increases a general sense of wellbeing. Researchers at Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU) have now discovered that a fibre-rich diet can have a positive influence ...


Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.