Monday, June 15, 2009

Don't tell me the health care system doesn't work.

I have been following the news on health care reform. Today, for example, the NY Times reported on President Obama's speech to the AMA. The president told the physicians' group, "Today, we are spending over $2 trillion a year on health care – almost 50 percent more per person than the next most costly nation. And yet, for all this spending, more of our citizens are uninsured; the quality of our care is often lower; and we aren't any healthier. In fact, citizens in some countries that spend less than we do are actually living longer than we do...Make no mistake: the cost of our health care is a threat to our economy. It is an escalating burden on our families and businesses." He even blamed the high costs of health care for, of all things, the GM collapse.

An editorial in that same newspaper is titled, "Doctors and the Cost of Care" and it is among the most e-mailed articles on the NY Times website. Among other things it says, "There is disturbing evidence that many (doctors) do a lot more than is medically useful — and often reap financial benefits from over-treating their patients. No doubt a vast majority of doctors strive to do the best for their patients. But many are influenced by fee-for-service financial incentives and some are unabashed profiteers." It tells readers, after reporting on a study in McAllen, Texas, "Doctors have been complicit in driving up health care costs. They need to become part of the solution."

As someone who worked in health care for twenty years, and who is a parent who recently saw his nine-year old son treated for heart repair, I have an informed, and at the same time admittedly prejudiced, view of health care in America. I think it's great. I think most of its doctors are above reproach.

How great is in health care in America? Imagine - replacing someone's face. Imagine - replacing someone's severed hand. Imagine - stopping a baby's tiny heart, operating on it, and re-starting it to save that baby's life.

How hard is that? We are told that our hearts are the size of our fist. Think, then, of a newborn baby and the size of its fist...and its heart. Think of operating on that tiny and life-giving organ. When my son was born with a heart abnormality nine years ago, Dr. Frank Pigula saved his life by stopping it, repairing it, and re-starting it. I have seen open heart surgery, yet I can't imagine doing what Dr. Pigula did.

Dr. Pigula operated on my son again, last month, using a similar procedure to stop my son's heart, get inside it, repair one valve and place a porcine valve where one didn't exist, and then re-start his heart and his life. Dr. Pigula has now given my son a better life on three occasions. I can't imagine ever telling him that he makes too much money or that he orders too many tests. On the other hand, I admired his thoroughness and attention to detail. It has had a significant bearing on my son's recovery and will affect the rest of his life.

This same Dr. Pigula recently served a tour of duty in Afghanistan, leaving his wife, three children and a good income to help the people of that country, one of whom was a small child who was shot by accident by her little brother (and not by an American soldier). You can read about him here:

I thank God that Dr. Pigula survived his tour of Afghanistan. He operated on my son four weeks ago and now my son stands beside me as I type, growing healthier and stronger every day. He wants on this computer so he can google Transformers, Bionicles, Halo, and Star Wars stuff. Later when we take a shower together because he is not yet allowed to take a bath, I will see the raw, red scar that runs straight down the middle of his chest to his stomach and I will be reminded of both the horror of such operations and the miracle of his recovery. I will see Dr. Pigula standing in front of me at Children's Hospital of Boston telling my wife and me that Nickie's surgery went well and that he will have a full recovery. I will see evidence of the greatness of health care in America in the eyes of that humble, dedicated and talented man.

Wednesday, June 10, 2009

Who do you love?

Do you love your wife? Your husband? Your partner? Your son? Your daughter? What does that mean, you love them?

In November of last year, doctors told my wife and me something we had been expecting for nine years, that our son Nicholas would need heart surgery. He was born with a defective tricuspid valve and a missing pulmonary valve and that caused blood in his heart to leak back after it was pumped; it also caused his right ventricle to expand. We had begun to see him lose stamina and to say more often, "I'm exhausted." We knew after November that surgery would come sometime in 2009 but we weren't sure when.

The news of the impending surgery affected me deeply. I had strong feelings of love for Nicholas, certainly, but the news that he would be operated on made me examine that love more closely. That news terrified me and my imagination ran amok. I thought of every conceivable outcome, many of them tragic. When we were told the date of surgery, I felt caught in a whirlpool of events over which I had no control.

When I thought I could lose someone I deeply loved, I began to question that love. I learned that I could tell Nicholas I love him, I could kiss him, I could hug him and have a catch with him or take him to a movie. But somehow none of that seemed enough. It wasn't until I felt his vulnerability that I struggled with the question of love for him.

Every evening before we went to sleep, Nicholas came to my bedside to visit. Often I was half asleep when he talked to me about my day and his day or his Transformers or Bionicles or the Friday evening episode of Star Wars Animated. I realized one evening that I wasn't really seeing him or listening to him. I wasn't really experiencing him. So, I started to listen deeply, to hear him, to watch him, to see his expressions, his gestures.

Of course, I continued to tell him I love him, to tuck him into bed, to take him to "Groovy" on the South Side to look for Transformers, to take him to see a movie and to do all the other mundane but important things parents should do that mean love.

But, when I watched him and listened deeply to him, experienced him as fully as possible, in the moment, I felt I was really loving him, especially when I knew his surgery was imminent and real. I was attending to him in a way that made the other things seem peripheral.

I now force myself to do that with the people I love, and I have tried to love more people. To notice them, listen to them, experience them in a deep way that makes "Walk a mile in my shoes" seem simplistic.

I don't know who you love, but I know you love someone. I suggest that you go to that person and experience him or her as fully as you can, in the moment. Listen to each word, watch his or her gestures, give that person the best gift you can give, your full and undivided attention. Listen and watch as if that person might be taken from you at any moment. You will, in an interesting way, become that person and you will experience a compassion and empathy unlike anything you have ever felt. Then, you will really know love.

Monday, June 8, 2009

Meet the Manager.

I asked Dr. Frank Pigula, the man who operated on my son's heart, how the heart re-starts after being stilled by potassium during heart surgery. "It wants to beat," he said.

"It wants to beat." Just that. I was amazed by that simple yet profound answer, just as I was impressed by his willingness to answer any of the questions we had in a patient and understandable way.

But, then, we experienced the same openness and willingness to communicate during our overall experience at Childrens Hospital of Boston, the hospital which is ranked by US News and World Report as the top hospital in America for pediatric cardiovascular surgery.

When Nickie had pre-operative tests, the nurses and technicians explained in simple terms the MRI, the Stress Test, everything with a cooperative and patient attitude. The day before the surgery, Dr. Pigula sat with us and talked about the surgery, using his hands and diagrams on paper to show us as simply as possible where he would place the pulmonary valve and how he would correct the tricuspid valve. Before he left the room, he hugged Nickie and said, "I'm going to take good care of you."

And he did, for over six hours. Our son went to the ICU after his surgery, and Dr. Pigula came to check on him and to talk to us. At 10:30 pm, after having operated on our son for much of the day, Dr. Pigula sat in the Parents' Room in ICU with us, even though he was visibly tired, and reviewed the operation in terms we could understand. It allowed us to go to the hotel, assured that Nickie was receiving the best care in the world.

The surgical repairs required to make my son's heart function normally were complex, but Dr. Pigula successfully communicated to my wife and me, two parents, filled with fears and anxieties, who had only a basic understanding of a very complex situation. Despite his extraordinary expertise, Dr. Pigula reached us. For people like us on opposite ends of the technical spectrum to successfully communicate, with emotions and fatigue thrown in to the mix, was nothing short of miraculous.

When I visited the ICU the next day, Nickie was connected to a variety of monitors and medications. On the first day I asked Patrick, his one-on-one ICU nurse, about the various drugs dripping into the veins of my son.

"Dopamine helps his right ventricle with pumping," Patrick said as he worked around our conversation. "The morphine is for pain. The heparin keeps the tubes open and the nitroglycerin is for his coronary arteries."

Patrick told me about the milnirone, also, but I forgot to listen, amazed as I was by the monitors that measured the oxygen saturation of his blood, his heart rhythms, his blood pressure and his body temperature.

On the second day in ICU, Lauren, his new nurse, told me Nickie would have the breathing tube removed when he was able to breathe on his own. After she finished telling me, an announcement came on the intercom in the ICU inviting any visitors who were interested to meet "Meet the Manager." Lauren and I smiled at each other and I said, "I'll go meet the manager just to tell him or her how great you folks are." Nickie waved to us with his right hand and nodded his head up and down in agreement.

In the 18 ICU rooms, children of all ages, many of them babies, struggled to regain their health, some struggling for their lives, and the intercom invited visitors to "Meet the Manager." While these young patients struggled to regain their health, the rest of us struggled to communicate.

And, it is a struggle. Whether we place ourselves or our loved ones in the hands of medical professionals and have an overall understanding of things but lack the particulars, or whether we are sitting with a customer trying to explain computer technology to the uninformed, we must be able to answer questions and concerns in a clear, understandable, courteous manner and usually with great simplicity. Any communication that does not do that will likely fail. Then, if we're in a business setting, we'll hear, "I'd like to speak with your manager."

Saturday, June 6, 2009

Emotions Affect Communication

My 9-year old son, Nicholas, had heart surgery in Boston three weeks ago on May 21st. Before he had the surgery, he had an MRI on the 19th. Holly, his mother and my wife, went into the procedures with him. After it ended, she told me something that I had forgotten. Nickie had had a previous bad experience with an MRI in Pittsburgh, specifically the IV needle, and Nickie was a little frightened in Boston. The nurse at Children's Hospital of Boston used a "numbing patch" so that he wouldn't have the discomfort of feeling a needle enter his arm before the MRI. Evidently the patch had some form of anesthetic and it helped Nickie accept the needle. He liked the "numbing patch."

Our family had two days to look around the Longwood section of Boston and we even visited part of Old Boston and the Freedom Trail. But, our enthusiasm was dampened because each day Nickie had a pre-operative procedure and the impending surgery loomed over us. Each time we looked at him, we knew he would be having very serious surgery in a day or two.

On the day of surgery, as Nickie lay on the gurney in Pre-Op before the surgery, I struggled to stay composed and struggled with the right words to say to him. Before I lost control, I leaned close to him and said, "Come back to us, Nickie." Then I lost control of my emotions and had to leave his bedside. The anesthesiologist had given Nickie a sedative but through the fog of that relaxant, Nickie said, when I returned to his bedside, "Why are you crying, Daddy?" That caused me to lose all control.

Nickie came out of surgery at 10:00 pm and we visited him briefly in the ICU. The site was horrifying to my already heightened sensitivity. He had tubes in his mouth, lines in his neck, his chest, his side, his arms, and, of course, he had that long bandage running from his collarbone to his stomach. I didn't have to use my imagination to know what lay under that. But, the doctors told us everything had gone well in the operation and that an echocardiogram after surgery had shown that the new pulmonary valve and re-constructed tricuspid valve were working very well "with little to no leakage."

The next morning I arose early from the hotel where Holly and our son Alex were staying and went to the ICU. Nickie was alert, although the nurses were giving him a slow drip of morphine for pain. He still had the breathing tube down his throat and was certainly unable to talk but he flashed me a "thumbs up." I had to go into the hallway because I became choked up again at the site of this courageous little guy.

In fact, I went into the hallway and called my wife at the hotel to tell her about the "thumbs up," but, because I was so choked up, I struggled to talk, she thought something bad had happened. I straightened that out and was able to reassure her, but I was having a bad communication day that would only become worse. In fact, my sister, Dianne, who had travelled from Florida to be with us during and after the operation, called me minutes after my call to my wife. I told Dianne I was "in the hospital." She thought I had been hospitalized with a heart attack! It took a while for me to explain I was visiting Nicky in the hospital and why I was so joy.

The communications didn't get any better. I went back into the ICU to see Nickie clearly in distress. He was trying to communicate with the nurse and was becoming frustrated because he had the breathing tube down his throat. I went to his side and leaned over, kissing his forehead and trying to calm him.

"Relax, Nickie," I whispered to him, my face inches from his. "Tell Daddy what you need."

I watched his mouth as he tried to form words, but I was unable to understand them. With the tubes in his mouth and down his parched throat he couldn't make his tongue and lips work the way we normally do to form the simplest sounds.

"Try again," I whispered to him.

Again, only garbled words or sounds came from his mouth.

By this time, he became frustrated and angry and again leaned up toward me, his mouth wanting to make a roar of sounds, the veins in his necked distended and a tear running down his cheek, but nothing came out but a dull hiss.

"Write it in my hand, Nickie," I said, holding my right hand up to him.

He used his right index finger to trace letters in the palm of my hand, but, in his pain and slight delirium, he was unable to write in such a way for me to understand, or I was inept at understanding.

"Can someone get a piece of paper and write the alphabet on it?" I asked.

"I will," one of the nurses said, quickly leaving the room.

Just as quickly she returned with a plain white piece of paper with the alphabet crudely written on it.

I took it from her and handed Nickie a pen.

"Point to the letters, Nickie," I said, holding the alphabet in front of him.

He pointed to an "N' a "P" an "H" and stopped.

I turned the paper over and said, "Can you write the words, Nickie?"

He put the pen to the paper as I held it in front of him again and wrote several letters. The first letter looked like an "H" and I couldn't understand the other letters, mostly because he had had to write them while in pain and fatigue one day removed from over six hours of open heart surgery and without a solid writing surface or any support for either the pen or the paper.

"I'm going to give him a little more morphine," the nurse said and I kissed Nickie and ran my hand through his hair telling him "I love you." Then I left the room.

Within a few minutes, my wife and son Alex came to the hospital. After Holly had a chance to see Nickie in the ICU and comfort him, I told her about the incident with Nickie and showed her the piece of paper with the words Nickie had written.

"Numbing patch," she said to me. "He was trying to write 'numbimg patch.'"

And so he was, but I was unable to see it. I had mistaken his "N" for an "H" and I was so emotionally invested and distracted by the sight of my son in pain that I couldn't communicate. Just as when I talked to my wife and sister on the phone, I was sending a message they misinterptreted because they, too, were under tremendous emotional stress.

I realize now that all communication is filtered through the emotions that the senders and receivers are experiencing at the moment, or in the case of Nicholas, the physical circumstances they are experiencing, the pain, the anesthetic, the difficult surroundings. All Nickie really wanted was a numbing patch for his whole body.