Monday, May 11, 2009

A Parents Fight

I received a phone call last week, one similar to several others I have received. It was from a mother who had just been told there were no remaining options to save her child. The oncologists said it was time to go home and just focus on "comfort care". The parents begged for other options, but were told there were none. The doctors said they did a nationwide search, and there are no available trials or promising treatments. Nothing. It is all over.


The mother had received my name from someone, and called to ask if I had any recommendations on where they could turn. Where there any options to save the life of their daughter?


Within 48 hours we actually found several options. Two top rated hospitals quickly stepped forward, agreeing that there were options that had not been tried. One of those hospitals, MD Anderson, quickly approved her daughter for a new clinical trial, and flight arrangements were being made to get her there.

So how does this happen? How do some hospitals claim all hope is lost, while others have promising options? I will never forget one of the last sentences I heard from Brett Workman, "Why are they giving up on me when I still want to fight?"


The truth is that, with cancer, no one had 'THE ANSWER". If you speak with 10 doctors, you will get 20 opinions. Every doctor approaches each child with a unique set of experiences and perspectives. And their views are often controlled and filtered through hospital policies, insurance approvals, and legal guidelines.


We learned very early that the battle with cancer must be fought on two separate fronts. The primary battle is fought head on with cancer by our courageous children. But there is a second battle, one that took us a while to fully understand. And this battle falls squarely on the shoulders of the parents.

Our son was cared for by skilled doctors at good hospitals. But there are significant weaknesses and limitations within the medical system. As parents, it is critical that we understand those realities, and remain fully informed and proactive in saving our children. Doctors are there to practice medicine. They are not there to fight the entire medical, legal, and insurance industries. That battle is up to us.


When Tyler was diagnosed, we felt like deer in the headlights. We did not know what to do. I now understand several things that I wish I had known then. It would have saved a lot of very stressful days, and would have dramatically altered Tyler's early treatments. I would like to share a few of them.

1.Protocols: Our first night at the hospital, we were told the treatment protocol. Only one was presented. I asked about other options, including what other hospitals would do. I was told every major hospital used the same protocol for stage IV Burkitt's Lymphoma with Leukemia, and that we need to begin immediately. The statement was not true. In fact, we spoke with eight hospitals, and each recommended a different protocol. And most claimed theirs was the most accepted, most aggressive, and held the most promising results.

Hospital policy, staff experience, and insurance coverage all play a roll in determining protocols. It is critical to know the "why" behind every decision. You have the right to expect your doctors to be able to explain and defend every decision. You must then compare those answers with those given by other doctors. Remember the 100's of consent forms you sign before each treatment? There is a reason you sign those forms. By signing, YOU are taking responsibility for the treatment decisions. Make sure your consent is truly informed.

2. Define Success: We were often told treatments were "working" or "not working", but had difficulty getting specifics. However the best doctors are willing to clearly define expectations before the treatment begins. Some of the treatments Tyler received only hoped to slow down the cancer, while others anticipated a reduction of 25% or more. You must know the anticipated outcome of each treatment, or you have no method of participating in future treatment decisions.

I have seen decision made to "stay the course", not because it was working, but because they knew of no other options. Dr. Jerome Groopman, of Harvard's medical school, calls this "diagnosis momentum". In his book "How Doctors Think", he writes of the incredible pressure on doctors to stick with a treatment, even in light of failing results. The system expects doctors to make quick decisions and run with them, never questioning or second guessing the decision. Their increasing patient load compounds this problem, leaving little time to thoroughly review results.

If your wish to be proactive in your child's treatment, you need to know these specifics. Words like "promising" or "optimistic" do not give you the needed information to make intelligent choices. As a parent you have the right to make informed decisions, and that includes changing treatments or moving your child to another facility if necessary.

3. Records: Get and keep all records of all test from all sources. Do not just accept your doctor's summery. We went directly to each department to get the reports. I was amazed at the volume of information, especially by radiology, that the oncologist choose not to disclose to us. No information is irrelevant. If you do not understand the data, have the doctor explain it until you understand. You doctor busy, and will try to speed through the answers. Do not allow it. It is not your fault that he has too many patients. If he refuses, get another doctor or another hospital.

4. Question Everything: Never stop asking questions. Ask them several times to make sure you understand the answer. You may feel like your doctor is in such a hurry you need a baseball bat to keep him in the room to finish your questions. If so, go get a bat. Or get a new doctor. Regardless, get the answers you need. Once you have the answers, contact other doctors and ask them the same questions.

If they give you a hard time, just remind them that you are not the professional. You are not expected know immediately understand everything with the first explanation. They are the professionals, and are expected to clearly explain and defend all recommendations until you are able to make an informed decision. If the doctor does not have the time, then he can take it up with his staffing department. You must have all questions answers.

5. Nurses: Bottom line, they are worth they weight in gold. They have more practical knowledge, better understand hospital hierarchy and politics, and spend more time with more patients than any other hospital staff. And most important, they will spend more one-on-one time with your child, getting to know them as an individual, than anyone in that hospital. They are an incredible resource.

By the way, if you want a quick litmus test on the calibre of a doctor...watch his relationship with the nurses. We found the ones with the best relationship with the nurses, were the ones who spent the most time answering our questions. Likewise, the ones that looked down on the nurses, also treated our questions in a condescending and arrogant manner.

6. Second Opinions: As said earlier, talking to 10 doctors, you will get 20 opinions. There is a reason. No one holds all the answers. But surprisingly few parents actually meet with other doctors at other hospitals. I see more people get second opinions for a car repair bill than on the life saving treatment for their child.

I understand this. We desperately want to believe we have our child in the best hands. Read through the caring bridge sites, and you will find almost every parents is told "their" hospital and "their" doctor are the top rated for such-and such cancer. But they can not all be "the best".

Nationwide Children's has large banners everywhere rating them as the 5th ranked hospital in the U.S. But the banners don't mention that the #5 ranking is based solely on the number of beds. Nor do the banners mention that the same report (reported here in U.S. New and World Report) ranks Children's oncology #22 out of 30 hospitals.

I do not know why Children's received a low rating, and don't particularly care. It does not matter. You cannot place blind faith in any of them. Every child is different, and every case is unique. Incredible results have been achieved at all hospitals. And the "best" hospitals have made horrendous errors. Treatments are not all created equal. Nor are hospitals or doctors. Each one brings a different perspective and set of experiences. You must meet with several, and make an informed and intelligent decision.

And most importantly, make sure it is truly an independent opinion. Do not get a referral from your doctor. You are looking for a fresh perspective on the treatment. You are looking for options and alternatives. You are not looking for someone to parrot back what you have already been told.

7. Instincts. Trust your instincts. Over and over I have seen this to be the right course of action, if it is back by a clear understanding of treatments and options. Remember: You know your child better than any health care professional. If a treatment does not sound right, demand more information. Once you have all the information, always proceed in the direction of your heart.

8. Fight to win. Survival rates on all cancers reduce dramatically in a relapse. Assume you have only one chance to kill this thing. This may require battles with insurance and doctors who use a cost/risk analysis. A protocol survival rate of 80% is often considered good enough. You may be told further treatments are to risky, and "saved" for those who relapse. But often the issue is not risk, it is cost. Why spend money on 100%, when you can wait and only spend it on the 20% who relapse? I say "Why not?" Do not take this to the next game. Finish it now.

9. Hierarchy. Like every company, hospitals have a hierarchy. If you are fighting for a change in treatment, make sure you are talking to the decision maker. It is the only way to confirm that your concerns are being heard. It is rare to find anyone in the hospital willing to question a decision by a superior. In fact, a recent study concluded "the military-style hierarchy of the medical establishment, which discourages advocacy by underlings" was the #2 cause of accidental hospital deaths (#1 was medical staff fatigue).

Your doctor is very talented and caring. But he is there to practice medicine, not fight political wars with his superiors. The doctors are pressured by insurance companies, legal departments, and cost cutting hospital administrators. And their patient load is too high. The result is that the individual observation approach of decision making analysis is replaced by the battlefield triage approach of protocol medicine. Individual attention is up to you, and you will need to go around your doctor to get it. Do not worry about offending or upsetting them. The good docs (and most are) will understand and try to assist you where they can. Many docs are just as frustrated with the system as the families.

10. Understand The Tests: Our children are tested constantly, but do you really know the value of those tests? Many produce high percentages of false negatives, others false positives. Most are only a small piece of the puzzle. When making decisions, understand the value of the tests.

We spent many hours pacing the room, waiting on the results of Tyler's PET and CaT scans. We hated Friday scans, because it would often be Monday before we received the results. What we did not realize was that interpreting scans is very subjective.

A recent study at Stanford University Hospital had experienced radiologist review scans over a 5 day period. In 30% of the cases, the doctors disagreed in the interpretation. Unknown to the doctors, the experiment included several duplicate scans. In 15% of the cases, doctors gave a different interpretation of a scan they had previously reviewed. Scans are important, and clear scans are great. But interpreting the information is often more of an art than a science. Know the limitations.

Bone marrow tests produce high percentages of false negatives. Bone marrow should be tested in several locations. Brett Workman was only tested once, and the test came back clear. He was declared in remission and sent home. Within weeks he had relapsed, and was stage IV with 90% bone marrow involvement. He did not survive. But did he really relapse that fast? Or did they miss the cancer by only testing once? What if they had tested in more locations? Would they have found the cancer sooner, and been able to save Brett? I wonder.

Often the number and types of tests are dictated by the insurance company, rather than the doctors. It is critical to know this information. Insurance companies can be fought, and you can win those fights.

11. It's Not Easy: Taking on this role to save your child is not easy. We are all desperate to believe that our child is in the best hands. We beg the doctors to just tell us it will all be okay. We know we are not qualified to make these life and death decisions on our child's treatment.

But the truth is that we are already making those decisions. Turning it over to the doctor is a decision. Choosing not to get a second opinion is a decision. Trusting that the insurance approved treatment will work is a decision. Whether you decide to be active or passive, it is still a decision.

Some of our children will live, and others will not. And we will never know what the outcome would have been had we acted differently. It is a terrible burden, but it is ours. We can no more escape this burden than our children can escape theirs.

I was highly criticized by many people for how aggressively I fought. Some still say my efforts changed nothing. They say I put Tyler through a lot of needless agony, and he would have survived regardless of my efforts. Maybe. We will never know. I do know my aggressive decisions caused some deep wounds in our family, and for that I am sorry. We are still working through some of those wounds to this day. But I made a decision our very first night on J-5. I made a decision that, no matter what happened, I would leave no stone unturned in finding his cure. If I were to do it all over again, I would certainly communicate better with Kathy and Tyler. But I would not change a single action. I fought my hardest. And whenever you fight, always Fight to Win. Our children deserve nothing less.

7 comments:

Julie Hupp said...

Perhaps the fight was more than necessary for Tyler but many other children have benefitted from your knowledge. You are a great resource and an encouragement for those of us still seeking answers.

Thank You

Anonymous said...

Thank you for all your help.

Anonymous said...

As always, your information is great! Thank you for keeping up the fight.

Anonymous said...

Wow what a good read for that blog today, I just found this today, if I knew 11 months ago what I know today, I know I would of wanted different treatment for my son for sure.
Incredible web page you guys have.

Matt Mason

http://www.caringbridge.org/visit/zacmason

Kara Cunningham said...

Great info. Perfectly said! I applaud you!!!

Bridget said...

Kyle-
Please tell the parent of the girl you heard from last week that MD Anderson is an excellent hospital. They are treating one of my cousins currently, and she is able to be at home and go back and forth. She was able to walk with her graduating class this past weekend with the help of the hospital on her treatment plan. They are currently waiting for a bone marrow transplant match and the hospital has been nothing but wonderful.

I wish this hospital or other treatment plans had been able to step up and help my 13 year old cousin Ryan who passed away in September-who was sent home in May with "no other options" and wasn't expected to make it through the summer.

Your information to help other parents is amazing, I wish the doctors were as dedicated as you to finding a cure for all the children out there.

info said...

Very Well written and thought out. Thank you so much for this wealth of information.

Debbie Mooers