Keeping Hope Without Hiding Medical Reality

The assumption behind most concealment is that information and hope sit on a scale, and that adding one removes the other. Research on prognostic communication does not support it. Studies of patients with advanced cancer who received honest information about their prognosis have not found that hope collapsed as a result. What is well documented is the cost of the alternative: patients who do not know where they stand choose treatments they would otherwise decline, reach hospice in their last days rather than their last months, and have conversations they wanted to have too late to have them.

What actually happens over the course of an advanced illness is that hope relocates. It starts attached to cure. When cure is off the table, it attaches to time, then to specific events: a birth, a wedding, a season, getting home. Later it attaches to smaller and more reachable things, being comfortable, being at home, not being alone, a particular conversation, leaving something in order for the people who remain. None of these are consolation prizes offered in place of the real thing. They are what people who are actually dying report caring about.

People routinely hold an accurate understanding of a poor prognosis and a hope for a better outcome simultaneously. Clinicians see it constantly and it has a name, dual awareness. Someone can complete an advance directive on Monday and talk about a trip in the spring on Tuesday without either statement being false. This is only a problem when the hope displaces the planning entirely, so that documents go unsigned, hospice arrives in the last forty-eight hours, and things that needed saying do not get said. Both can be held. Hope for the unlikely and prepare for the likely.

Patients differ enormously in how much detail they want, and clinicians are poor at guessing. In one study of newly diagnosed advanced lung cancer patients, 88 percent wanted information about life expectancy and roughly half recalled receiving it, and none recalled being asked what they wanted in the first place. So say it. If you want numbers, ask for the best case, the worst case and the most likely case, which is the structure many patients prefer over a single figure. If you do not want numbers, say that, and name who should be told instead. You can change your mind later in either direction.

A median survival is the point at which half a comparable group had died and half were alive. Half of those people lived longer than the number you were given, some by a great deal. Individual predictions are frequently wrong, and more often too optimistic than too pessimistic. Use the figure to plan the next few months, not to count down.

The practical method clinicians use is ask, tell, ask. Find out what the person already understands and how much they want to know. Give a small, plain piece of information. Then ask what they made of it. When someone says something frightening, the useful response is to acknowledge it rather than correct it. That sounds terrifying keeps the conversation open; do not talk like that closes it, and usually permanently.

Being truthful does not mean volunteering every statistic unprompted, repeating bad news that has already landed, or removing something a person is holding onto that costs nothing. It means not constructing a false picture, not contradicting what the person can feel happening in their own body, and answering direct questions directly. Most people know more about their situation than their families think. What they often lack is permission to say so out loud.

• NCI PDQ, Communication in Cancer Care (health professional version): prognostic disclosure, ask-tell-ask, SPIKES, NURSE
• NCI PDQ, Planning the Transition to End-of-Life Care in Advanced Cancer
• NCI, Coping With Advanced Cancer patient booklet