The Patient's Playbook

Introduction
 
After I was born, in 1951, my mother went into a major postpartum depression. For the first six months of my life, she couldn’t get out of bed, leaving me in the care of my father and maternal grandmother.  I actually didn’t learn about this until I was forty-five,   and someone casually mentioned it at a party. Sadly, the stigma of psychiatric illness was so great at the time (and still can be today) that families touched by chronic depression often had to carry the burden in silence.  My parents had been counseled by doctors that they shouldn’t discuss it, so they didn’t.

My mother  eventually  recovered, but  then  she  became bipolar, which meant there were days, months,  and years when she’d be  fine,  and then long periods when she was incapable of getting up, making dinner,  or holding   a conversation. During  her manic phases, she’d be on a high  for  days or weeks, talking  nonstop  and sometimes  being cruel  to me and others  I know she loved. I couldn’t predict when her disease would take control of her. Coming home from school, I never knew if I’d be greeted by a fire-breathing dragon or a smiling mother with a glass of milk and a plate of cookies.  I had to feel around the edges of the door for danger, the way they teach you in fire safety training.

When  I was  ten,  my  mother   screamed at me  for forty-five minutes because I left  a sneaker  on the steps.  The only ten-year-old who hasn’t left a sneaker on the steps is a ten-year-old who doesn’t have sneakers or steps.

During an ugly scene when I was twelve or thirteen, I physically held my mother down in a chair and told her, “You will stop yelling at my brother right now.” That moment changed everything between us. She was my mother, and I loved her, but her disease was dangerous, and I had to be assertive.

Although my mother’s illness was hard on me, it had to have been worse for my father. The instant I was born, he lost his wife. And yet he remained extraordinarily positive and strong. He was a genuine role model, the moral center of gravity for every community that he was in—whether it was our larger family, the synagogue, the Boy Scouts, his business, or his trade association. He was the guy who would solve other people’s problems. I could talk to Dad for hours.

By my early teens, I was actively involved in helping with my mother’s care. That was when she received her first electroshock therapy treatment for recurring depression.  Later, we had her on daily lithium, a mood stabilizer. I had to grow up and become a responsible caregiver at a very young age.

And here’s where the story gets complicated. When I was in high school, my father came home one evening, clearly agitated. For me, the sun came up at night when my father walked through the door. As tired as he was, those hours with him were absolutely precious. If he came home anxious or upset, that was a big deal.

He had gone for his annual physical that day with his primary care physician, a man with   whom he’d attended high school in Newark, New Jersey. The doctor had recommended that my father see a certain cardiologist. A week or two later Dad came home even more rattled than before.  The cardiologist had told him he needed to have open-heart surgery.

I was overcome with worry. Was my dad going to die? Losing him wouldn’t just mean I’d  be an orphan,  practically  speaking; it would mean I’d  have to take full responsibility  for my mother. That was not a reality I could handle.

That night I couldn’t sleep. The next day I couldn’t concentrate at school. I got home that afternoon and picked up the phone to dial Lenox Hill Hospital in New York. Although we lived in suburban Union, New Jersey, I read The New York Times every night, and somehow I recalled “Lenox Hill” always being mentioned.  I knew that when you wanted to go to a nice restaurant, see a good play, or go to a top hospital—you went to New York.

“Can I please speak to the head of cardiology?” I asked.   I’m sure my teenage voice must   have cracked on the line as I spoke, but I wasn’t going to aim low.

“Dad,” I announced when my father got home, “I set up an appointment for you to get a second opinion   from the chairman of cardiology at Lenox Hill.”

“You know, that’s a good idea,” he said. “I’m gonna do it.” And that was that.

On the day of his appointment, I waited at home in agony. This had to go right. I couldn’t imagine a future without him. I was seeing the walls coming down.

It was all I could do not to knock him over when he walked in the door. “What did he say, Dad?  What did he say?”

“He said, ‘There’s nothing wrong with your heart, and the doctor who recommended surgery should be shot in a public square.’ ”

Exact words. He was ecstatic. And I still remember where I was standing in the kitchen when he said it. I remember this better than I remember what I had for breakfast today.

My father never had any heart problems.  No high blood pressure, no calcium in his coronaries, no leaky valves. He passed away in 2007, succumbing to something totally unrelated to his heart. But back in 1988, when I was building my first company, I met Dr. Robert H. Brook, who was then the vice president and director of RAND Health, a health policy think tank. He had just published research showing that many of the major surgical procedures being done in the United States were harming rather than helping patients. In fact, when it came to coronary  artery  bypass  graft  surgeries—what  my father  was told  he needed—14  percent were done for “inappropriate reasons,” and 30 percent were done for “equivocal” reasons. I thought, My God, this doctor has found scientific evidence of what I suspected was going on some twenty years ago.

I still think of my father every day and how his “case” ignited my passion for helping people to get better care. Managing serious illness is not easy, but armed with  the knowledge in this book, and the support  of a trusted primary care doctor,  I truly believe that everyone can—and must—become  a  more powerful  and effective health care consumer.