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Genomic medicine demands a long term framework

By:   |   Jul 08, 2018   |   Views: 17   |   Comments: 0

The man was worried. His frail, elderly, widowed mother had been complaining of chest pains, and tingling and numbness in her left arm. These were classic signs, he knew, of serious heart problems. He didn't want to alarm her, so he didn't say, "Mom, you may have had a heart attack!" But he did convince her to see her doctor.

It was a new, young doctor, assigned to her by the HMO. "He was so nice," Mom told her son later. "He told me all about his family, showed me pictures of his kids . . ."

"What did he say about you, Mom?"

"He gave me a little check-over, said I was fine."

"Did you tell him about the pains and the numbness?"

"No, he was so busy, he had to go, I didn't want to bother him. I'm sure he would tell me if there was something really wrong."

The story illustrates vividly so much of what is wrong at the core of health care. The woman is in imminent danger of death from myocardial infarction, and she is not getting the treatment that could save her. As usual when a problem is systemic, asking, "Who's to blame?" leads to fingers pointing in every direction. Was the son to blame, for withholding vital information out of concern for her feelings? Was the HMO to blame, for switching her to a new doctor, and for pressuring the doctors to spend too little time with each patient? Was the doctor to blame, for not asking more probing questions? Was the old woman to blame, for assuming the doctor had psychic powers to determine her health without full information?

Flipped over, the story gives us an outline of what we might hope for -- what we might aim at -- in the health care team of the future.

The Health care Team Of The Future

The health care team of the future will be:

1) Inclusive: It will involve not only the doctor and the patient, but the nurse, the patient's "health coach," as well as medical specialists, nutritionists and other experts when necessary, and -- just as important -- the patient's family.

2) Collaborative: Everyone on the team has a role. The doctor becomes more of a "chief medical advisor." Final judgment rests with the patient and the patient's family.

3) Long-term: Today's medicine is almost entirely about acute episodes. But most health and disease happens over a lifetime, not in a moment of crisis. Trauma happens in a moment: A gunshot, a car wreck. But even trauma is usually a result of lifestyles, habits, addictions, and environments that extend over years and decades. The most effective health care is framed by long-term relationships.

4) Information-rich: Those relationships will be flooded not only by information, but information targeted to this particular patient and situation.

What's Driving It That Way

This is more than a fantasy. Four powerful forces combine to make this dream team both necessary and possible.

1) Dissatisfaction: From rising costs to the second-guessing by HMO bureaucrats to the flood of paperwork, almost every detail of our current system leaves both practitioners and customers feeling enraged and impotent. You can find happy individuals, but no group, no profession, no industry involved in today's health care can be said to be well served and satisfied.

2) Demographics: As the Boomers age and the ranks of the aged grow, the ranks of clinicians will shrink -- demanding an entirely new and more efficient relationship between the two.

3) Information technology: The Internet and "just-in-time" medical information systems allow both clinicians and patients unprecedented access to information -- and unprecedented ability to sort the information for what is relevant and useful.

4) Genomics: Then information contained in your personal genome will grant an entirely new and powerful ability to prevent major diseases from developing -- but this information would be of far less help in our current system, which waits for acute episodes. Genomic medicine demands a long-term framework.

What Gets In The Way

Economics and mythology combine to throttle the development of this new health care team.

Most of today's health care operates on a managed-care business model that pays doctors for high throughput of acute episodes and penalizes them for building long-term relationships, asking probing questions, and establishing a full picture of what lies under the surface. The same business model penalizes patients for any contact with the health care system, and (in practical terms) forbids the kinds of classes, groups, informal visits, and long conversations that could form the basis of long-term, non-acute relationships.

The mythology of the doctor as soap-opera hero, from "Dr. Kildare," "Ben Casey," and "Marcus Welby, M.D." to "ER" and "Chicago Hope," bolsters and repeats the image of doctor as semi-divine keeper of information and judgment. Most students in medical-school boot camp, even now, are trained in a crisis-oriented intensive model that gives little or no place to the arc of a lifetime, the relationship with a whole person, the involvement of a whole team.

What About You?

How do you start to create it yourself? Rather than wait for it to be created? By holding up a mirror to yourself. As a doctor, a patient, a nurse, a family member, when it comes to health and health care, who do I want to see in the mirror?

We already know that you have taken one step: You're here on HealthCentral.com. That means automatically that you are more curious, more interested, more ready than most to create your own future.

As a patient, this is just what is required: Educate yourself, ask questions, be a squeaky wheel, demand that your doctor and other clinicians build that kind of active, involved relationship with you.

If you are a doctor, give patients the space to be involved and curious. Carve out the time and energy to have a relationship with each patient. Don't take the role of medical judgment until it is thrust on you. Invite collaboration from nurses and other colleagues. Make use of their judgment and observations.

As kin of a patient, be open with information and support. Be a listener. Be assertive, if necessary, in running interference with the system for an elderly or sick relative. Get involved and stay involved.

As a nurse, build collaboration with fellow nurses and with any physician that provides an opening -- and let the others know that is what you expect.

As an executive at an HMO or insurance provider, take a long look at the true costs of interfering in medical decisions, and of paying only for acute interventions, rather than prevention, education, and long-term collaborative management. Take a new look at the policies and orientation of organizations with a much lower "churn rate" (percentage of customers who don't re-up each year) than yours, such as Kaiser and Group Health of Puget Sound.

Policy changes, legislation, and new, creative ways of doing business all will make a difference. But none will have the revolutionary force of changed attitudes and new behaviors. Become the person that you would like to have on your health care team.

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