“It is paramount during times of an acute health episode to have someone on your team to personally direct and guide your care, even better if it’s a well connected MD that you have rich history with. It is always my goal to keep my patients from needing me, but when you do – know that I and my team are ready to jump into action. From access to all of our pre-negotiated services to research for the Best in Class physicians tailored to your specific needs is what you can depend upon from me.”
Steve Jobs lived ahead of his time. Tragically, that’s also how he died.
It’s impossible to know for certain, but his early death may have been avoidable. Jobs likely hastened it significantly by making medical choices with the same decision-making style that created the world’s most valuable company and its transformative products: He went against the grain and trusted no one’s instincts but his own.
I have been helping executives navigate the health care system for decades and commonly see this pattern in high achievers—accomplished CEOs, investors, entrepreneurs, physicians, professors, attorneys, research scientists. Unfortunately, I often see the pattern do them harm. Jobs, eventually, saw that too, but it was too late. Walter Isaacson’s recently published biography reports that Jobs regretted disregarding medical guidance to have surgery immediately after diagnosis, choosing instead diet, meditation, and other interventions at a “natural healing clinic” he found online.
Jobs’ malignancy had been discovered serendipitously and early, which put him ahead of the curve in treatment options. It was also a rare, relatively treatable variety of pancreatic cancer. But anyone who seriously studies this particular disease knows that it’s one of the deadliest and demands swift, aggressive treatment. When, nine months after diagnosis, Jobs finally abandoned alternative treatment and agreed to surgery, his cancer had spread to the liver, dramatically reducing his survival chances.
His intuition-based decision-making process and consistent rejection of conventional thinking is why Jobs’ extraordinary life and career will be studied for decades. But sadly, perhaps a more universal lesson has nothing to do with Apple: Health care decisions are different from others. What matters when you find yourself seriously ill isn’t how smart, decisive, and accomplished you are in your chosen field. What matters is being smart enough to know that your judgment is compromised by emotions—and finding clarity through expert help.
That’s not as obvious as it sounds. Newly diagnosed patients start down a predictable and understandable path. Typically they develop an insatiable appetite for what might be called Google Medical School. They network with family, friends, support groups, and philanthropies. They consult with medical specialists and undergo batteries of diagnostic tests. This eventually leads to information overload and contradictory advice—not a good framework for making decisions. Unfortunately, most patients respond to this unbearable uncertainty by grouping along one of four paths, none of them optimal.
The first group religiously follows the advice of a single physician selected on the basis of stature or charisma, shutting out other guidance. The second is countercultural, rejecting conventional medicine at a visceral level and embracing a wide array of alternative interventions, often unproven or untested. The third suffers from paralysis of analysis, in a futile search for certainty. And the fourth manages medical decisions like business decisions, trying to generate consensus but among experts unaccustomed to defending their recommendations and uncomfortable challenging others’.
There is a better way. In my experience supporting hundreds of patients through life-threatening health issues, I’ve found that it’s important for patients to acknowledge first that serious illness produces overwhelming stress that alters their ability to reason. And second, that the medical world operates differently from other professions. “When you’re a hammer, everything looks like a nail” holds true for medical specialists, who tend to advocate for their specialties.
First, get an accurate and complete diagnosis. This sounds elementary, but bear in mind that interpreting biopsies and imaging studies can be subjective. Experts make errors. Advanced tests like molecular diagnostics that lead to personalized treatment for certain cancers are commonplace in major academic centers, but not necessarily in community practices. Ask for them.
Then find specialists with experience in your precise condition. As biomedical knowledge expands, physicians focus more narrowly on mastering a small number of conditions and treatments. It makes sense to find those who deeply understand your case.
After getting an accurate, complete diagnosis and identifying the best specialists, the third, unconventional step patients should strongly consider is a daunting but differentiating one: orchestrating coordinated care among multiple physicians, specialists, and related support, such as nutritionists and psychologists. This orchestration is a specialty niche I happen to occupy, but not all patients have access to such advocacy services. Here’s what they can do on their own.
Like finding a godparent or guardian for your child, the key is forethought.
—Prepare to communicate. A lot. Gather all medical history pertinent to your case and organize it chronologically in a master file that’s easily updated and distributed. Include a list of your medications, results of tests, and names and contact information of all doctors, facilities, and family members involved. Keep an updated written narrative from your perspective of your medical journey thus far. This helps specialists operate at the top of their game and ensures that everyone has the same precise information. Too much work? Consider the stakes.
—Assemble a team. Realize that you’re recruiting a medical orchestra that you, or someone you trust, will direct. When consulting with a new physician, explain this concept of an integrated team. Get a commitment to be a team player. Some doctors are unwilling, because our compliance-oriented and privacy-bound medical culture carries enormous implications in the event of a legal misstep. Some are simply uncomfortable with the concept. If they back off, that’s a red flag.
—Assign a care coordinator. Orchestrating multiple treatment efforts requires a particular personality type and skill. Overbearing, didactic—or indecisive—traits lead down the four unproductive paths described earlier. The coordinator must be neutral, not an advocate of any particular approach or aligned with any hospital, physician group, or health plan (which typically won’t pay for this service) in any way that would limit their ability to engage with anyone on your behalf. The coordinator needs to be sensitive to the fact that all advice carries bias. She or he also needs to consult the medical literature to ensure that your treatment is informed by the latest research findings. Generally, sympathetic general practitioners or accomplished nurse practitioners are good choices, provided they accept the scope of the assignment. A family member can sometimes be a good alternative.
—Stay the course. Medicine is still practiced largely by physicians working independently, coordinating with others by consultation correspondence and reviewing charts. Your care needs to follow a new model, and your caretakers need to be reminded that they’re part of a single, integrated, coordinated team. They may occasionally need to be herded. To encourage this, see step one.
This highly structured framework offers many benefits. It ensures that all relevant information is collected and the most capable physicians are engaged in a well-informed decision-making environment. As biomedical research induces more specialization, and as reimbursement becomes more of an issue, the need for this coordinated approach will only increase.
We can learn a great deal from Steve Jobs’ life, but there may be more to learn from his death. Business schools will parse the former. My hope is that medical schools—and clinicians, policymakers, and patients—will spend at least as much time learning from the latter.
by Leslie Michelson