What About the Children

The days before Christmas are speeding by. I don’t have the energy to do all my Type A persona plans to complete—but wow, is this an improvement over last year. Yes! But when I write this, I’m reminded of how long the month of December is when you don’t feel well? A question came to mind, “What about the kids?”

Mom just had cancer surgery, she’s depressed with all that should be done and she has no strength. Dad is doing all he can, or maybe there isn’t a dad. And then I think, “What about the kids?”

I’m not focusing on physical or monetary needs, I’m thinking about emotional needs. Often kids don’t realize life isn’t normal and they become demanding. Sometimes they live in fear.

Two thoughts came to mind today, 1. Keep Christmas as simple and yet normal as possible. Simplify, simplify, simplify. Maybe this is the year for a Charlie Brown Christmas tree. 2. Encourage the kids in specific way. If the patient or caregiver doesn’t have time to create positive signs, ask the kids to make them. Keep the signs simply.

Years ago I visited a PMP patient and wife at Creighton. He didn’t want company, but Ann did. She hugged me. Talked and talked. Then said, “We have a five year old at home. She helped me write out Hope! Believe! Love! In two languages and then we hung them around the house.

What about candy striped signs? Ask the kids to be part of the positive thinking healing process.

Still Lionhearted, Kat

When Do We Tell Our Children

For the patient or the caregiver, dealing with a chronic or terminal illness painfully tough. Talking with the children is even tougher.

♥ When do I tell my children?

When you can control your emotions is the best time. If you can’t cope, talk with a healthcare professional. You and your family will benefit if you can stay active, involved in their everyday activities and keep life on a normal schedule.

Some ask, “What is a normal schedule?” The answer is whatever you’ve done in the past continue doing. If you were an early riser, get up. If that isn’t possible,

♥ Why should I tell my children I have a chronic or terminal illness?

Children are smarter than you think. They understand when changes take place in routine, when here are more meds han usual around, more doctor visits and more medicines around than usual. Hushed conversations tell the child something secret is happening—that can tweak their emotions.

♥ Allow the child to prepare for the loss of a loved one.

You prepare your child for the first day of school, the first date, and even a major test at school. The loss of a parent is much more traumatic than any of those usual life events, be kind, allow your child to grieve while you are still here. Soften the blow. Lavish love and nurture security outside of yourself. Teach your child to be independent of you and move them to ask for help from other extended family, friends, teachers or church leaders.

Often a child feels responsible for the death of a loved one. Some call that “magical thinking” like they can control their universe. Ease the guilt coupled with loss.

Be truthful.

Be forthright. If a question is asked, answer it.

♥ When should you tell a child a parent or sibling might die?

Some illness has the look of death, loss of weight, more treatment, many hospital stays. But what about the patient that looks fine on the outside, yet the doctor says time is running out. The child has no idea of the inevitable.

Tell them about serious illness

Give the name of the disease

Share the possible outcome

Never lose sight of hope

♥ Remember, all life is terminal.

We never know when death might come. We might cross the street, be hit by a car, or fall down a flight of stairs. To prepare

From the Insurance Warrior

Another PMP patient is nicknamed the "Insurance Warrior" for good cause. She has battled and won over 44 appeals for herself and other patients. I'm publishing her full newsletter with her permission. Longer than usual, but good. If you want to make copies and/or share this information, Todd has given permission to copy and share. Kat

The Insurance Intelligencer
8/31/09

The $3.7 Million Man

As I go forth to speak to general audiences, people make remarks about the state of healthcare.

I heard this one last week in the farm belt of Ohio:

"The problem with healthcare these days is greedy doctors."


Treatment denied

On August 5, I received a call from Tina in Michigan. Her husband Michael had been diagnosed with metastasized abdominal cancer. He needed the same tried, proven lifesaving surgery that I had undergone four years ago.

The facts of the case:
The surgery was denied because it was "out of network."
Tina has a self-funded plan. This means that her employer gets to approve or deny Michael's treatment.
The employer is St. John Health. which is a non-profit Catholic hospital.
The insurer is Blue Cross Blue Shield of Michigan, which is also a non-profit.
After the treatment was denied in June, Tina and Michael left the appeal to their doctor. He wrote a one-page letter which said, "I am the treating physician. This is the patient. In my professional opinion, the patient needs this treatment."
The doctor's appeal was denied. A second letter was on the way to the employer/insurer, to launch a second appeal. When Tina called me, the employer's position was: "We won't consider this second appeal until August 24, because the Regional Appeals Committee doesn't meet until then."
Michael's surgery was scheduled for August 20.
I said, "Stop that second appeal. With a self-funded plan, you only get two appeals. After that, it's the Federal District court for you -- good luck with that. Stop the presses, we are going to write a proper appeal."
How much does the CEO make?
When I take on a case, the first thing that I do is to find the highest-level executives of the insurance company -- and of the employer, if it is a self-funded plan. Names are power, access is power, personal contact information is power.
I found the top executive at St. John Health, the Catholic non-profit hospital. In the process, I discovered that there is a higher authority. I am not referring to a divine power, but to Ascension Health Ministries.
The mission of Ascension Health Ministries: "We commit ourselves to serving all persons, with special attention to those who are poor and vulnerable." The highest-level executive at Ascension Health Ministries is Anthony Tersigni. Last year, Anthony Tersigni earned $3.7 million.
Ascension Health Ministries closed three of their less-profitable hospitals in inner-city Detroit during 2008.
The motto of Ascension Health Ministries? "Healthcare that leaves no one behind." Tina Beitel has worked for St. John Health for nineteen years. They must have missed someone, because they were about to leave her husband behind -- by denying the only treatment that could save his life.
Next, I went looking for the head of Blue Cross Blue Shield of Michigan. Blue Cross Blue Shield of Michigan is also a non-profit.
BC/BS of Michigan raised their group rates this year by 22%. They applied to raise the rates on individual policies by 56%. The president of BC/BS of Michigan is Daniel J. Loepp. His total compensation last year was $2.9 million.
In the process or writing and winning forty-four lifesaving appeals, I have developed a high appreciation for the absurd. However ... the irony of this one made my teeth ache.
My goal was to sit here in Seattle, in my worn-out pajamas, and to craft a document that would have Anthony Tersigni running for his checkbook.
How much does the doctor make
The doctor in this case is the surgeon who brought me back from the brink of death four years ago; his name is Dr. Paul Sugarbaker. He has performed over 1500 of these twelve-, fifteen-, twenty-hour surgeries. He has published over seven hundred medical journal articles documenting every aspect of this treatment -- including his outcomes -- over a period of twenty-nine years.
Dr. Sugarbaker pioneered the surgical techniques whereby the surgeon removes every bit of tumor down to 2.5 mm. Then, he treats the remaining microscopic cells with heated intraperitoneal chemotherapy for two hours, making sure that every surface is contacted.
I had metastasized appendix cancer. This same treatment could achieve exponentially better outcomes for people with colon cancer and ovarian cancer. People often ask, "Why aren't more surgeons learning how to do this? Why don't more surgeons want to do this, if it saves more lives?"
Why? Insurers hate to pay for it. Hospitals do not like to book such long surgeries, because four five-hour surgeries are more profitable than one twenty-hour surgery. Besides, who would want to work that hard? A surgeon who performs twenty-hour surgeries for thirty years will eventually look like Dr. Sugarbaker -- stooped, with a visible "widow's hump," and permanently listing to one side.
A surgery of such magnitude requires a long hospital stay, with expensive post-operative care. The only thing to be gained from it is better outcomes for patients.
Dr. Sugarbaker is either at the hospital, or out teaching and demonstrating surgical techniques -- all week, every week, sixty hours a week. He rides a bike to work, he has a small office in the doctor's office building, his minimal staff work tirelessly to get insurance companies to pay for this treatment.
How much does Dr. Sugarbaker charge for performing this grueling surgery? $25,000.
And, even when insurers do grudgingly agree to pay for it, they have many ways of reducing reimbursement after the fact. Although Dr. Sugarbaker may bill $25,000, he never actually receives $25,000. Believe it or not, there are bean-counters in an insurance company office who review the surgeon's bill, crossing off line items as "not necessary." When the deleting and bundling of codes is done, he has received as little as $400 for one of these surgeries. Who would want such a life?
********
Anthony Tersigni, $3.9 million. This equals one-hundred fify-six grueling twenty-hour surgeries, at $25,000 per life saved.
I have never been so motivated to win an appeal. As I researched and wrote, I would say to Tina, "Wait till Mr. Moneybags gets a load of THIS."
It took me three days to craft my War Documents. After I faxed and emailed it to all of the top executives in the middle of the night, Tina worked the phones, "Did you receive my urgent, expedited appeal?"
Eight days after Tina and I first spoke, the denial was overturned, and the treatment for Michael was approved. That was August 13. They flew to Washington, D.C. on 8/17, and Michael had his surgery on 8/20.
Gee, I guess that they really didn't have to wait until 8/24 for the Regional Appeals Committee to meet.
Which brings us back to where we started. Greedy doctors?
If this is all about greed, we will soon have many insurance company CEOs, and no surgeons to save our lives.
Peaceful Insurance Warrior-ing,Laurie Todd
Listen to my radio interviews!Check out the new book!www.theinsurancewarrior.com

Dealing with Terminal Illness

When I arrived home last night I noticed that Paddy dog had managed to remove the ears from his toy bunny. Before I left he’d dislodged the eyes and tore out the whiskers. Before long, he’ll snag the tail and tear out the fluff and we’ll buy another toy. When we first purchased the toy bunny it looked like this lop-eared sweetie, adorable.

The bunny reminded me of what every caregiver needs, A Large Set of ears. Listening ears. Not the Paddy dog ears that wiggle back and forth waiting to get in his bark between sentences and certainly not my kind of ears, they only heard half of what husband said because I was busy forming my opinion. Every caregiver needs to grow big ears that hear all of what the care-receiver says and eyes that see what the CR isn’t expressing.

For the caregiver, friends and family dealing with a terminal illness, listening without responding is crucial. While waiting to board my flight from Eugene to San Francisco, I met Patty. In only a few minutes of conversation I learned she was flying to see her dying father. I shared the following tips with her—maybe you know someone that might need them also.

Listen well. Allow the care-receiver (your father) and your family to express all their feelings. Some things said might hurt, try not to interrupt. Allow time to process what is said, even years, maybe someday you’ll understand their feelings.

Realize not all the family will think the same. Forgive them in advance, especially if they push their ideas on you.

Dredge up every positive memory possible. Share them as family around the care-receivers bed whether they are awake or not. (My friend Laura wrote out her wishes before she became comatose. She requested that her family talk to her and each other like she was still with them.)

Journal. Sometimes we cannot express our feelings to our family, write them down. In years to come you won’t remember what happened, but your journal will remind you of how you survived.

Read the book of Psalms to the Care-receiver and the caregiver, ask your family to help read.

Laugh. Loss is inevitable, and will happen to all of us. Laughter eases tension.

Cry. Tears are healing.

5 Tips on Finding A Specialist

Tonight while visiting our son James, a builder in Eugene, Oregon, we had opportunity to hash over old memories and then talk about his work. Somewhere in the middle of all that James said, "Mom, I like Holmes on Homes. He shows how people get ripped off by shoddy builders." Then he said, "It's like people need to research the people they hire. Like ask for references, find out how many of these rebuild projects they've done and if they liked the finished product."

I just looked at him, I mean, this sounds like what I wrote in Capsules of Hope: Survival Guide for Caregivers. Only he's talking builders and I'm talking doctors. It's like why not, it works in everything. The food industry, who teaches our kids, and of course, what about the babysitters? To be a good consumer we need to give out positive feedback and let others know when something isn't done correctly or a company doesn't deliver what they've promised. Okay, so how does that pertain to caregivers?

Husband has switched roles with me. When he battled Psuedomyxoma Peritonei (PMP), I served as caregiver. I had no idea I should ask how many PMP patients a doctor had treated or what other patients thought about the care they received. Then this last month when I found a lump, the physicians assistant said I needed to see a surgeon, in a state of "I can't believe this is happening," I never thought about asking for a specialist for possible breast cancer, at least at first.

This I can tell you, the difference between the first general surgeon and Dr. Silva, Surgical Oncologist is major. Now I've not only written the instructions for others about the importance of knowing your physician, I've lived the journey and beat myself up because I didn't ask more questions. In this last month husband has learned first hand, that when the patient is in a state of shock and disbelief, the caregiver must ask questions. This I know, that man of mine is doing a good job. Together we have reaffirmed the importance of knowing your physician, this is your life. You need the best in the business for you in your current situation.

1. Search for a support group, often they have a list of the best doctors for your illness. Be aware, not everyone connects emotionally to a doctor. Check all options before being persuaded to use a doctor or not.
2. Use the internet. Has the doctor published articles about your medical condition? How long has he been treating your type of problem? Are there any negatives posted about him?
3. HIPAA prohibits the doctor from giving you names of patients for reference, but you can google possible feedback about the doctor, you might be surprised at what you find.
4. Ask the doctor, his staff, his assistant if they have patients who will talk to you about the care they received under this doctor. (When Dr. Loggie treated Gary in 2004, we gave our name and number to the office and said, tell patients to call us.)
5. Check the local newspaper. Often, especially if the doctor is treating rare conditions, articles have been written-good and bad.

IPHC Finally Catching On

Dr. Brian Loggie performed the IPHC (intraperitoneal hyperthermic chemoperfusion -heated chemo procedure) on my husband, February 205, 2004—that’s five years ago. Dr. Loggie had been using the heated chemo to treat the rare appendix cancer, Pseudomyxoma Peritonei (PMP), for over ten years. Today I read a newspaper article posted on the PMPbellybuttons support group. Seems some doctors are finally catching up to speed.

The newspaper article titled “LI doctors testing heated chemo for rare cancer” says “Long Island cancer doctors have borrowed a page from medicine's past to write a new chapter on how to address a rare malignancy by infusing heated chemotherapy directly into the abdomen using a heart-lung machine.” The italics are mine. I don’t understand what they borrowed or why they think their research and services are new.

I do agree with the article when it says, this is a “....therapy for cancer of the appendix, a malignancy so rare it is known as an orphan cancer. The American Cancer Society has no statistics on its prevalence.”

The article does mention that when Dr. Paul Sugarbaker started using this IPHC method twenty years ago, he met all kinds of resistance. It also says because PMP is still considered an orphan disease, not many people are diagnosed with it, and it’s still difficult to do clinical trials.

We know my husband is one of the lucky ones. The first surgeon, Dr. McCormick, properly diagnosed him with PMP. We also know it’s a miracle he is alive today—two oncologists failed to send us to Dr. Sugarbaker or Dr. Loggie. They told my husband, “We’ll keep you as comfortable as possible.”

What would we do differently given the same set of circumstances we faced in 2002? 1) Seek a second and third opinion. 2) Ask for the medical diagnosis written down and research the disease. 3) Find a support group—if you don’t find one, do like Stephanie Cain did. She formed PMPbellybuttons in November 2003. I’m the 17th person in the group. Thanks Steph.

About the news article, well good. Husband and I are thrilled that other cancer doctors are catching up—it’s time.

We are especially grateful we "stumbled" into Dr. Loggie only four miles from our home. PTL.

Never Give Up!

Never give in.
Never give in.
Never, never, never, never—in nothing, great or small,
large or petty—never give in,
except to convictions of honor and good sense.
Never yield to the apparently overwhelming might of the enemy.

—Winston Churchill

Most people are familiar with this famous quote from a speech by Winston Churchill, but not everyone knows to whom he gave this speech. He stood before a group of young schoolboys at the Harrow School in England, Churchill's own alma mater, at a time when England was under attack by Germany in World War II. Did he write it down and share it later? Did his speech change the lives of those students or did the teacher become more empowered?

Personally, I think his speech is appropriate for caregivers. Every caregiver no matter the age or the illness must develop a mule-stubborn-persona in order to survive the task at hand. Every caregiver should paste Churchill’s quote on a plaque and hang it someplace where they see it first thing every morning and the last thing each night. I suggest pasting it on the bathroom mirror, above the kitchen sink, in the car and on the nightstand.