Do Patients Need to Know They Are Terminally Ill?

Fran Lowry

May 02, 2013

Experts in palliative care differ on whether or not patients who are terminally ill should be informed that they are dying.

A debate, published online April 24 in BMJ, reflects the latest thinking on both sides of the issue.

On the yes side are Emily Collis, MD, a consultant in palliative medicine at Pembridge Palliative Care Centre, St. Charles' Hospital, and Katherine E. Sleeman, MD, PhD, from the Cicely Saunders Institute, King's College, both in London, United Kingdom. They argue that not communicating the bad news can affect the trust between a doctor and patient and, ultimately, the patient's autonomy and quality of life.

On the no side is Leslie Blackhall, MD, section head of palliative care at the University of Virginia School of Medicine in Charlottesville. She counters that insisting on telling patients they are terminally ill "creates more suffering than it relieves," especially because the concept of terminal illness is not clearly defined and prognoses can never be certain.

Knowledge Empowers Decision Making

"Patients have the right to make informed decisions about their healthcare," write Drs. Collis and Sleeman. "Informed consent, and the process of balancing risks and benefits of treatment, is a fundamental ethical principle. This principle is no less relevant for a patient with terminal illness, for whom an awareness of the incurable and life-limiting nature of their underlying condition is essential to decision making."

Being fully informed empowers patients and gives them time to put their affairs in order, Drs. Collis and Sleeman point out. This including making decisions about end-of-life care, finances, guardianship, power of attorney, and where to die.

Unfortunately, the British authors note, patients making such decisions are not always fully informed. A recent American study showed that 69% of 710 patients with incurable lung cancer and 81% of 483 patients with colorectal cancer who received palliative chemotherapy were unaware that the treatment was not curative (N Engl J Med. 2012;367:1616-1625).

Being informed about end-of-life issues allows patients to have a say in where they would prefer to die. In fact, patients with cancer who are aware of their situation are more likely to die at home, Drs. Collis and Sleeman report.

In this debate, the term "terminally ill" applies to any patient with a condition that is incurable, progressive, and life-limiting, not just patients with cancer, Dr. Collis told Medscape Medical News.

"The majority of such conditions are in fact nonmalignant, and include end-stage respiratory conditions, heart failure, dementia, Parkinson's disease, multiple sclerosis, and motor neuron disease," she said.

Often, patients are better informed than members of their family and their medical team think, and open discussion usually allays fears, rather than worsening them, Dr. Collis said.

"One of the reasons patients choose not to discuss their understanding of their illness is to protect their families. Open discussion can allow everyone's fears to be explored and addressed, Dr. Collis explained. If preferences are not discussed, they are less likely to be achieved," she added.

The most common fear related to telling patients they are terminally ill is that it will cause emotional distress and take away their hope. But Dr. Collis said this fear, in her opinion, is unfounded.

"In fact, a sensitive, honest discussion is likely to do neither of these, and can help support realistic hopes and allay fears. In practical terms, these conversations are hardest when the patient's ability to communicate is diminished by their disease," she said. "It then takes expertise in communication skills, perhaps with the use of a speech and language therapist and communication aids, to enable the topic to be explored with the required sensitivity."

Dr. Collis said patients are rarely surprised to learn that they are terminally ill. "It is extremely unusual that this information comes as a surprise. Most patients already 'fear the worst'." And most are relieved to have an open discussion about fears and anxieties and to have the opportunity to make realistic choices about their future, she added.

Dr. Collis has also seen some patients — a minority — who, after being informed that they are terminally ill, refuse to believe what they have been told.

"It is their rightful choice to hear the information but not truly believe it. It is important that prognostic information always be given with the caveat that, for an individual patient, the outcome is always uncertain," she said.

According to Dr. Collis, there is always room for hope, even when the scientific or medical outlook is poor; the individual can choose to either have faith for a change or hope for a miracle."

On the other side of the argument, Dr. Blackhall writes that the real question is not whether patients should be told that they are "terminally ill," but how clinicians can provide excellent care to patients with incurable, progressive illnesses.

"Predicting how long someone has to live is very imprecise in most conditions that people die of in the United States, where most people die of cancer, heart disease, lung disease (like emphysema), and dementia," she told Medscape Medical News.

"We've spent 35 years trying to teach doctors how to break bad news and push them into telling people their prognosis, but I don't think the focus on telling people their prognosis, how long they have to live, is the thing we should be focusing our truth telling on," she said.

"The real thing we need to focus on, if we are going to be truthful with patients, is helping them make decisions. We need to explain what we can do for them. We need to say there are some things we can do with your chemotherapy, or your radiation, or whatever else we have to offer, but there will come a time when those things won't work and may do more harm than good," she said.

People need to know they have an incurable illness, but they also need to know their illness trajectory. They just do not need to know how long they have to live, Dr. Blackhall emphasized.

"What can we do for them, what is going to happen to them — as opposed to how long they have to live — that is a better way of focusing the conversation."

Dr. Collis, Dr. Sleeman, and Dr. Blackhall have disclosed no relevant financial relationships.

BMJ. Published online April 24, 2013. Yes Abstract, No Abstract

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