Talking About End-of-Life with Young Cancer Patients
Madison, Wisconsin - How do you tell a child he is dying?
That's a question that health care providers who work with pediatric cancer patients have to confront with some regularity, says American Family Children's Hospital pediatric cancer doctor Margo Hoover-Regan, MD.
But there is another, less common question that may be even more difficult to answer.
Do you tell a child he is dying? Do you tell him even if his parents don't want him to know?
"In pediatrics, the patient is a child cared for by their parents," says Dr. Hoover-Regan, who in addition to her work with cancer patients serves as the director of the organization's pediatric palliative care program. "We want children to be involved as much as they're able, but we've all been in situations where parents say, 'I don't want you to talk about this.' That can be tricky."
So tricky it might be tempting to accede to such a parent's wishes and not directly address the child's serious illness. But doing so can have negative consequences for both clinician and patient.
"It breaks trust down. His relationship with his family and medical team will be weaker," Dr. Hoover-Regan says, adding that prolonged denial and silence "can become an adversarial situation that gets more unpleasant over time."
Beyond that, both parents and doctors can underestimate how much a sick child - even a very young child - understands about his condition.
"There are young kids who understand they're dying," Dr. Hoover-Regan says. "Often they probably know what's going on already. It isn't news and won't change his perception."
As a result, Dr. Hoover-Regan advocates for open communication when dealing with parents reticent to discuss this most delicate topic.
"I make a point of saying, 'We need to talk about this and work through it,'" she says. "I'm going to be honest with your child. If he asks me a question, I'm going to answer it honestly."
But there are different avenues to this honesty, and Dr. Hoover-Regan finds a sensitive approach superior to blunt and intractable.
"I tell parents, 'We need to make sure your son or daughter hears what we're talking about. Should we do that now? How would you like that to unfold?'" she says. "We may be the medical experts, but the parents are experts on their child. We need to listen to their concerns, and hopefully we can reassure them."
Time can be the cancer care team's ally. Parents of sick children may not want to address their child's mortality today, but that may change in a week or a month.
"Conversations occur over time. This isn't something that has to happen in one conversation," Dr. Hoover-Regan says, adding that doctors should not hesitate to rely on the entire team in this regard, including registered nurses and child life specialists who may have close bonds with patients and families.
Once the subject has been broached it will allow the child to work with his parents to determine the course of his final days, weeks and months. Does he want to go back to school to say goodbye to his friends? Does he want to see one last Badger game? Plans to do so can only be made if parents and children are willing to have these conversations.
"If they're able to talk about it openly, everybody can move along in that process," Dr. Hoover-Regan says. "The child can do the things he wants to do, and it might bring him closer to his parents and create an opportunity for them to share their grief."
It won't ever be easy, of course.
"You have to get comfortable with being uncomfortable," says Dr. Hoover-Regan, invoking a phrase a former colleague of hers used to describe the physician's role in end-of-life discussions. "This is their family and it's a very personal experience. They have to work through it in their own way."
Date Published: 11/10/2015