Should doctors tell parents of terminal children to quit pursuing quackery?

It was only a matter of time before the name Dr. Stanislaw Burzynski would grab the attention of the family of McKenzie Lowe, a 12-year-old from Hudson, N.H., with that most damning of diagnoses, a diffuse intrinsic pontine glioma,  an inoperable brain tumor with a median survival of less than a year.

Like McKenzie, my own daughter was 12-years-old with a recurring brain tumor that had started to metastasize and was expected to claim her life within months. For painfully personal reasons I understand the attraction of Burzynski, a Houston internist with no board certification in oncology, who has been claiming for decades that he can cure incurable cancers, while failing to demonstrate efficacy of his treatment — sodium-rich drugs called antineoplastons that used to be made from human blood and urine.

McKenzie’s family is currently seeking an independent physician to administer the drugs, which is contingent on the FDA’s ruling that “compassionate use” of antineoplatons be allowed in her case, lifting a 2013 ban following the death of a 6-year-old Burzynski patient.

If McKenzie’s family is successful in finding a physician, others will surely follow. Should oncologists be taking a stronger stand against dissuading families from a treatment that has been widely dismissed as quackery?

Minimizing parental regret about treatments not undertaken in children with terminal cancer is a role that oncologists strive to fulfill, according to doctors I’ve spoken with since the death of my daughter. Many will go along with alternative treatments to appease frantic parents if they appear to be safe and do not undermine quality of life. Our own oncologist agreed for us to try marijuana, ostensibly to increase my daughter’s appetite (it failed, by the way), but also because a handful of small studies show that it might be helpful in fighting brain tumors (that obviously failed, too).

But antineoplastons, which can cause high sodium levels, brain swelling, seizures and low red blood cell counts, are neither safe nor conducive to a good quality of life.  How to make the case against them without alienating a desperate family?

In a BBC TV series, “Great Ormond Street Hospital,” pediatric oncologist Dr. Antony Michalski shows how it’s done. The parents of Luna, who has a recurrent ependymoma, a brain tumor with a poor prognosis, tell Michalski that they are leaving the U.K. for Burzynski’s clinic. It’s clear what motivates them: Burzynski uses the “cure” word while Michalski’s etoposide amounts to palliative care. Here’s what Michalski doesn’t do with Luna’s family: He doesn’t trash Burzynski or his treatment, although he clearly expresses disdain for both, and he doesn’t use emotional blackmail to shame the parents even when the antineoplasms fail to reverse tumor growth.

In a moment of poignant reflection, Michalski says that his job is “being there for the child and the family, walking the walk with them [to] let them know you’ve got their child’s best interests at heart.”

Luna died in August 2012 three months after the program was aired. But we learn that the family changed their mind about returning to Houston for more treatment, something they had considered even after an MRI showed tumor progression. Perhaps Michalski’s gentle prompting helped them reach that decision.

Oncologists who speak to parents before they jump ship for Burzynski — should they be granted “compassionate use” like McKenzie and find a physician who oversees treatment — can benefit from Michalski’s strategy: a doctor who acknowledges that while a patient’s well-being must always trump a family’s despair, collaborating with parents as their allies and supporters, even when they choose an undesirable path, might work to the child’s advantage.

Suzanne Leigh blogs at The Mourning After Natasha.

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