A Lucky Life Interrupted (8 page)

As a teenager we called him Prince William because he was fastidious about his wardrobe and appearance. Those days were gone as he refused to shower regularly, often sleeping in the same clothes for two or three nights at a time. He needed more supervision, so arrangements were made to move him into memory care, a section of
the home where the guests are never out of sight of the attendants and their daily activities resemble a play group for grown-ups.

Mary took him out to lunch while the staff moved his essential belongings into a studio apartment, much smaller than his original space. Everyone was prepared for him to blow up when he realized the switch had been made but he barely noticed, one more sign of how rapidly his condition was deteriorating.

So much of Bill's bravado is a cover for what is a vulnerable and sweet personality. We see flashes of that when friends visit or during telephone calls when he remembers a long-gone pet dog or a recent photo of his nieces. Then he retreats into that private world of anger, forgetfulness, and disconnect from the orderliness the rest of us take for granted.

We're going through the trials and joy brought on by the journey of the modern American family. Our youngest daughter, Sarah, brought the joy when she decided to become a single mom at age forty-two after a long line of suitors failed to spark the necessary fire in her heart. The sperm donor pregnancy and birth after several tries was a tribute to imaginative new approaches to fertility and childbearing. The sperm donor, a close friend, pitched right in as a surrogate father, a comforting development to Meredith and me, separated as we were from Sarah and Archer by three thousand miles.

When cancer struck, Archer became even more important in my life because he gave me more reason to survive. I found myself thinking, “Well, if I make eight years Archer will be in the second grade and ready for his first fishing rod that summer.”

When Sarah took Archer to see Uncle Bill in his new home it had not been a good week—until they arrived. Bill wept with joy when he saw Sarah and her son. As Sarah rolled the always smiling Archer through the dining room the other residents lit up and the staff asked Sarah, not entirely in jest, if she could bring him by once a week.

All these parts of our family were not on my radar screen a few years earlier. How do you plan ten years or even five years earlier for one six-month period in which you develop cancer and your brother is institutionalized with Alzheimer's? When those disconnected realities arrived we were fortified by strong family ties and an acute awareness of our need to become even more supportive of one another. We'd been through the onset of dementia with my mother and brother Mike's mother-in-law.

Any one of the conditions brings a unique challenge to a family. Given the trends in cancer, dementia, and aging, there are many families of our generation facing similar challenges. As healthcare costs continue to rise, or even if they level off and become more manageable under the plan President Obama struggled to put in
place, the price tag for the middle and working class facing complex medical problems will continue to be a crushing burden. There are estimates that two-thirds of the family bankruptcies filed in America are the result of healthcare costs that could not be paid.

Moreover, the costs to the economy are their own form of cancer to society. If a manufacturer, small business, or giant retailer is spending an ever-larger percentage of their annual revenues on healthcare they look for the exits.

Below the middle class, there is another reality that cannot be sustained. If 20 percent of the American population is hovering at poverty levels because of the high cost of housing, healthcare, higher education, and the cultural pressures for more consumer goods, where do people turn, with so many states reluctant to fund Medicaid under the formula worked out in President Obama's Affordable Care Act, the national attempt to control healthcare costs?

At the end of the day, the objective reality of an aging population with its attendant health issues, the demands of a highly technical workplace, and the uneven results of public education are all strains on the American assumption of a level playing field. It is not just a dollars-and-cents issue. It is a commentary on our failure as a nation to adapt to the objective realities of profound
change and how it affects the general welfare of our citizenry.

A few years ago I led a discussion on this subject before an audience of some of the most entrepreneurial, financially successful executives in the country. I asked how many knew how much they spent on their healthcare the prior year. Sheepishly, they came to me to say, “I haven't a clue.” One said, “I wouldn't even know who to ask.”

We're a nation of informed consumers when it comes to buying flat-screen TVs, automobiles, running shoes, supermarket specials, and gas at the pump—but healthcare? Not a clue. It's time for everyone to get involved. For example, the older members of my power audience were all Medicare-eligible and no doubt on the rolls. My guess is that the now-highlighted 1 percent crowd would be willing to pay more into Medicare and take less to make more room for the needs of the other 99 percent.

Some argue that this would turn Medicare into a segmented welfare program and divide the country even more. I don't buy it. It doesn't hold up against the long-term realities of the needs and costs.

The madness of one part of the American healthcare economy filled up an entire edition of
Time
magazine in February 2013. It was called “Bitter Pill: Why Medical Bills Are Killing Us,” and it was by Steven Brill, a bulldog-tough
investigative reporter who has turned the piece into a bestselling book,
America's Bitter Pill: Money, Politics, Backroom Deals, and the Fight to Fix Our Broken Healthcare System
.

Sloan and other high-end New York hospitals are world-class facilities competing for the best and brightest physicians and to keep their beds filled with patients. They are also now part of a healthcare delivery systems arms war. New York television screens are filled with slick, persuasive commercials featuring ordinary Americans who promote the virtues of a knee replacement surgery at the Hospital for Special Surgery and New York—Presbyterian's campaign of real patients appearing in black-and-white commercials describing their treatment.

One, featuring a nine-year-old girl sharing her story of complicated cancer surgery, and poignantly bungling the word “Presbyterian,” has been viewed on YouTube more than seventy thousand times.

New York—area hospitals are spending more than $80 million annually on advertising, including stamping their names on subway cars and jitneys, and buying pop-ups on search engines and Google sites. Those expenditures, twinned with the acquisition of other healthcare systems, have turned the American hospital business into something resembling those nineteenth-century
land rushes in California gold country or Texas and Oklahoma oil territory. Administrators and boards are authorizing huge acquisitions and marketing campaigns, crashing through doors and spending tons of cash in hopes they hit a mother lode or a gusher. In the uncertain political and economic environment of future healthcare it is a big gamble.

Cancercenter.com, a private treatment company, buys an hour of television time regularly for an infomercial that is as skillfully produced as any documentary on ESPN. Someone has to pay for all that expensive marketing, the executives who manage it and the star physicians who can deliver on the promise of those infomercials.

New York—area hospitals and healthcare systems and hospitals across the country have adopted catchy slogans in their campaigns to attract patients:
HOPE LIVES HERE—AMAZING THINGS ARE HAPPENING HERE—ANY GIVEN MOMENT
.

The vice president of marketing at New York—Presbyterian, David Feinberg, says, “We don't see it as an expense; we think of it as a strategic investment.”

Brill takes readers through the hieroglyphics of billing patients. The codes and pricing rationale more closely resemble a Monty Python skit than a transparent financial transaction. Eighteen dollars for a diabetes test
strip available at Walmart for fifty-five cents. A patient with what turned out to be severe heartburn was charged almost $200 for a drug test. She was sixty-four years old. If she had been sixty-five and on Medicare the bill for the test would have been $13.94.

Altogether, her heartburn trip to the hospital, including ambulance ride, doctors, hospital fees, and tests, came to $21,000, and she had no insurance. Who did pay? If you were a patient at that hospital and had insurance, you pitched in without knowing it.

Brill's investigation turned up one horror story after another along those lines, many much worse, an experience I encountered while producing two hour-long documentaries on healthcare costs in the eighties and nineties. How to change that? I decided that the front lines of medicine, the physicians, have to get deeply involved.

In the spring of 2013, before my MM diagnosis, I received an honorary degree from the Mayo Medical School and gave the commencement address to the hundred graduates, almost equally divided between men and women. I am in awe of the bandwidth—the brain power—it takes to become a physician, the dedication, the imagination and energy, the compassion, and, in the new generation, the greater commitment to a level playing field for the patient population. With all of that in mind, I began with a favorite anecdote from Dick Butkus,
the legendary jackhammer-tough Chicago Bears linebacker.

When asked why his college major was physical education he said, “If I was smart enough to be a doctor, I'd be a doctor.” I told the graduates I shared that with Butkus but that I did have some observations about patients and doctors, based on personal and professional experience:

As your commencement speaker I cannot tell you how to read a scan, crack a chest, set a bone, insert a stent, prescribe the right combination of drugs, or any of the other procedures you're about to take into the world.

What I can talk about is my own empirical observation on the state of healthcare and doctor-patient relationships.

To begin, you're headed off to your residencies at a time of considerable confusion and uncertainty in the construct of the delivery of and payment for healthcare in America.

That [cost and payment] system in its current form is unsustainable on a national level. It is too opaque, too chaotic, too expensive, too uneven, and too inefficient.

My best guess is that it will be fine-tuned—
with more state-by-state flexibility and more private economy variations.

But what will not change is that the delivery of healthcare cannot slow or stop while this is sorted out. We're attempting to change tires on a semi trailer truck while going eighty miles an hour.

That's where you come in.

I am persuaded that even with Google most patients enter a doctor's office or a hospital as if it were a Mayan temple, representing an ancient and mysterious culture with no language in common with the visitor.

Judgment is suspended and the visitor in his or her own mind takes on the character of an anatomical chart, a mute and inanimate object, worried about asking the dumb question or befuddled by the new terms they're hearing.

That separation from their world and your world is a reality that to one degree or another will affect your short- and long-term future.

As a physician you have special standing with those who are on the outside looking in—and a special understanding because you are on the inside looking out.

To return where I began, a high priority for your profession is to demystify the way medicine presents itself to the world.

As graduates of the Mayo system I am confident they understood that. The clinic is a patient-friendly system with expansive lobbies and sunny solariums as a welcome retreat for patients facing the unknown or a defined condition that has no good outcome.

The real genius is in the management of every patient who comes through the doors. A Saudi prince may get more personalized attention than a Wisconsin schoolteacher, but both will be the central figure in a system where all of the attending physicians and technicians on the case are sharing the same information and constantly communicating with one another about what's best for the patient. Sounds logical, no?

In too many healthcare facilities and in too many specialized practices the patient is a one-off: advised or treated and then passed along with no connecting communication between the last and next physician. One of the enduring lessons of my cancer experience is that of the need for a personal ombudsman, a physician not directly involved in the treatment but with broad knowledge so he or she can interpret the primary caregiver's approach. Jennifer did that for me and I would like to see an institutional approach to the need.

We could have retired physicians available at major healthcare systems to assist befuddled patients and their families through the maze. We should take a cue from our most successful American-made enterprise of the
past twenty years: Silicon Valley, home of the entrepreneurial whiz kids who gave us first the portable computer and then a galaxy of applications that continue to change how we communicate, buy and sell, do research, entertain and be entertained. The digital world is our Big Bang.

And what's the driving motivation? Be disruptive. Challenge convention and change it positively.

We need to be disruptive in our approach to the obvious challenges of our time, one of which is healthcare. We have in this country great medical schools, physicians, researchers, healthcare systems, and pharmaceutical companies entangled in an imperfect system. President Obama's attempt to reform that was ambitious and in some states, notably Kentucky, it is working. However, from the beginning it was too complicated and too wide-ranging, leading to a series of exemptions and variations to satisfy states that wanted to tailor it for their unique needs and political realities.