Giving Bad News Without Destroying Hope

Today’s topic is another one that is near to my heart – how to deliver bad news. Not just any bad news, but the worst possible news: the news that there is no longer a realistic curative option for your child’s cancer. No parent wants to hear this. No parent wants to lose all hope that their child can be saved.

But this is truly the art of pediatric oncology: how to tell a parent the worst without destroying their hope.

As usual, I’ll start with a patient of mine - a former patient, unfortunately. She was 9 when she was diagnosed with metastatic Ewing’s sarcoma. She had the expected response to her initial therapy, but 3 months after her treatment was done, she had new tumors in her lungs. That’s when we had to have the talk. Because, realistically, the chance of curing her at that point fell to less than 5%.

So… how does the talk go? Well, I believe in being frank with my patients. So in this case, I sat the family down and told them how things looked. We talked about Phase II trials, about Phase I trials, about treatments outside of a clinical trial… But it was necessary to tell them that the bottom line was that their daughter would probably die of her disease.

Why did I tell them this? Did telling them this destroy their hope? Should I have allowed them to put all of their hopes in untested treatments? Should I have let them believe that their child would be among the 3 in 100 that get a clinical benefit from a Phase I trial?

I’m not sure that there is a perfect answer to those questions.

That honesty between a doctor and his/her patients is necessary should go without saying. But the truth can be so elusive. The patient I described above had 3 pulmonary nodules – 3 new cancerous tumors in her lungs. A surgeon removed the pulmonary nodules and we gave her chemotherapy. I’ve seen patients with relapsed cancer who were cured that way (and blogged about them). But those patients are the exception, not the rule. I tell patients and their family stories like the story of K… to help them maintain some hope, but I also try to help them to be realistic about their child’s chances.

Why? Don’t I want them to be hopeful?

Of course I do. But I also feel strongly that hope should be tempered with realism. People need time to prepare to die. There are things they want to do while they still can (travel the 48 continental United States, visit Japan, hunt bears, etc). There are relationships to be mended (although this usually applies more to adults than to children). And there are treatment choices to be made. I think the most important gift I can give is to help them make decisions that, when they look back in 10 years, they don’t regret. For some families, that means feeling like they did everything and tried everything and traveled everywhere in search of that slim chance of cure. For some families, looking back without regrets means helping the child accomplish a treasured goal or simply ensuring that the child died without pain and with dignity.

These decisions can only be made if the family is given a realistic assessment of the situation, including being told explicitly that there is little or no chance of long term survival.

Does that statement destroy hope? I don’t think so. I think it changes hope, it keeps their hopes realistic. When the patient is first diagnosed, the hope is for a cure. Toward the end, the hope could be for a trip to Hawaii, a high school graduation, or a death without pain. But those are still hopes. Important hopes. Hopes that no one can ever destroy.