Friday, February 6, 2009

Hunting Zebras

A very good friend of mine had a scare this past week. His daughter became ill. Scans were run and biopsies were discussed. There were a lot more questions than answers. Naturally every parent begins to fear the worst. Thankfully, it appears the worst case scenarios has been ruled out. However, for a few days, my friend got a glimpse of the frustrations every parent goes through when they have a child facing cancer (or, I suspect, any life threatening disease). The lesson they learned, the one we have all learned, is that it is critical for parents remain very proactive in the diagnosis and treatment of their child.

Much of the emphasis in health care today is focused on cost containment. The primary solution is a rigid adherence to protocols to fit every situation that arises. There are benefits to this approach (in addition to hospital and insurance company profits). The protocols do improve quality control, and allow less room of error. These protocols are built on the results of clinical trials and are designed to produce the greatest good for the highest percentage of children.

But there is a negative side. It is a triple hit that creates a large void in the treatment of our children. The responsibility for filling this void falls squarely on the parents. Here are the problems:

FIRST: There is a math problem. Protocols are created as a result of cumulative data from clinical trials. Here is the problem. Conclusions for clinical trials require a minimum of 350-500 patients in the trial. Although there are currently 40,000 children with cancer in the U.S., there are many different types of childhood cancer. Most childhood cancers have only 200-300 new cases per year. Add to that the fact that only 10% of children qualify for clinical trials, and you only have 20-30 qualifying cases for most cancers. Such a trial would never even get initial funding. It would take years to get the required totals. Therefore the solution has been to "bundle" similar types of cancers into the creation of several "one-size-fits-all" protocols. These generic protocols are designed to treat a statistical model created from the "blended" cancers. This does work...unless your child deviates from that statistical model. Because of the protocol system, these deviations are often ignored.

SECOND: The problem is magnified when you remember the purpose of protocols. It is cost-saving. It is to allow the senior oncologists to take on more patients. Since protocols replace individualized decision making, the doctors can delegate much more work to the 1st year residents and nurse practitioners. Individualized attention is greatly reduced, and sometime non-existent. This is not an issue of bad doctors, rather it is a reality of very good doctors being forced to handle more and more patients. The average pediatric oncologist oversees 55 patients at any given time. That is in addition to teaching students, conducting rounds, conducting clinic duties, and handling insurance and administrative items.

(Our greatest advocates were often nurses. They may have fewer degrees, but they have one indispensable asset that doctors are sorely missing. Time with the patient. They know these kids and understand them as individuals. I found the most effective doctors often had the best repore with the nurses.)

THIRD: This focus on cost control has created enormous pressure in all levels of the medical staff to "stick to the plan". The pressure on doctors is not just the reality of available time. If a doctor deviates from protocol, he is in uncharted territory. He has not just assumed greater costs and liability for the hospital. He has also opened himself up personally to legal liability, and possibly prescribed treatments the insurance company is under no obligation to cover. There is incredible pressure from hospital administration, legal departments, and insurance companies to avoid ant type of individualized treatment. The pressure is to quickly assign a standard protocol and move to the next patient. Soon a diagnosis momentum is created that no one questions.

"Hunting zebras" has become a derogatory term to describe doctors who deviated from protocols, spending limited resources on individualized care. It comes from the medical school saying, "If you hear hoof beats, always assume horses, not zebras". This sounds logical. Horses are more common that zebras. But what if your child happens to be the zebra?

In his book "How Doctors Think", Dr. Groopman of Harvard Medical describes the hospital pressure for obedience to protocols as creating a "zebra retreat". The reality if individual deviations in cancer do fit neatly into the assembly line protocol system. "Therefore", He writes, "Doctors who 'hunt zebras' are often ridiculed by their peers for being obsessed with the esoteric while ignoring the mainstream. They are said to be showoffs." Dr. Croskerry of Dalhousie University in Nova Scotia also warns of the growing "zebra retreat", saying "Doctors are shying away from a rare diagnosis. Powerful forces in medicine discourage hunting for them. In an era of cost containment, when insurers and managed care plans scrutinize how much time physicians spend on any one patient, doctors have a strong disincentive to pursue the ideas that are out there".

This triple hit can be deadly. Generalized protocols treating a statistical average, limited individual attention from doctors, and pressure on all levels to not question the plan.

So what if you child happens to be the zebra? What if your child does not follow the statistical model that the protocol is treating? As doctors are forced to take on more patients, and decisions become more protocol based, who is watching for the deviations? Who is looking for the zebras?

Things will not improve soon. In fact, all the current proposals for health care reform will only increase this reality. They all focus on greater cost controls, allowing for fewer options.

So I ask again. What if your child is the zebra? The responsibility falls squarely on the parents. You MUST remain proactive. You MUST know the statistical model they are treating. You MUST force attention to any deviation in your child that does not make sense to you. You must know both the benefits and limitation of every test and every procedure. You must know every available option and their pros and cons. YOU MUST hunt for the zebras. I assure you, no one else will.

With only 200 cases per year, Burkitt's is too rare to have its own protocol. Tyler was placed on a generalized protocol of large B cell non-Hodgkin's lymphomas. More specifically, Tyler had advanced stage IV Sporadic Burkitt’s lymphoma with Leukemia, AYA. With on 50-75 case per year, it represents less than 0.8% of the cases in the protocol.

I tracked down 48 people with Tyler's exact cancer. Everyone experienced cancer growth in the neck during the 10th week of chemo. I was told by the doctors that this was extremely rare, and did not need to be watched. But I pushed for scans, and in the 10th week it began to spread in his neck. Why where they not expecting this? Because my son's cancer was only 0.8% of the statistical model they were treating.

We became very close to another young man who had Burkitt's. He received a bone marrow transplant from his identical twin. There is documented evidence to suggests that identical twins should never be used as bone marrow donors in lymphomas. But that data will never make protocol. A patient with relapsed Burkitt's receiving bone marrow from an identical twin is rare. The numbers are too low to justify a trial (they need 350-500), and individualized treatment is ignored. Our good friend did not survive.

The Bottom Line: No one, not ever, will know you child more than you. Do not expect anybody to take on that responsibility for you. Never accept a treatment you do not understand. Never allow a doctor to walk away until your questions are answered. Fight for your child. And when you fight, always fight to win.

In Tyler's fight we were involved with several hospitals. We spoke with many very good doctors that answered our questions with honesty. Doctors willing to admit when they were unsure, doctors willing to discuss all the options. We meet several that did not, that were offended that I questioned their diagnosis. Search out the first group. They can be found in every hospital. It might take a lot of effort, but they can be found. This week I called two excellent doctors Children's, doctors willing to look past the routine and think out side the box of protocol. They were this first ones I thought of when my friend called me about his daughter. Those doctors are becoming more rare, and they are worth their weight in gold.


AJay Piniewski said... have to post these on PAC2...they are too good not to

connie prutting said...


I love your posts and they are definitely an excellent read. I laughed and related to the comment a while back when you were accused of "encouraging" the consumption of alcohol.


Anonymous said...

Thankyou, thankyou! We actually had a doc become angry and tell us we were asking to many questions. This was just after Mason's first relapse so yes we were full of questions and as you know our "Zebra" went on to relapse a second time, so thankyou again, Mason McLeod's mema in Atlanta P.S. Mason may be released from the hosp.thurs 12th to a nearby apartment. He is doing well on day +30 Thankyou for your support

Anonymous said...

Very scary prospects...

Anonymous said...

You need to write a book Kyle, seriously!!!

Kathi Clarke
Kelsie's aunt