Four people in my family: Testimony on payment reform legislation

Testimony at the Massachusetts Statehouse, May 16, 2011
I'm Ken Farbstein, past President of Health Care for All's Consumer Health Quality Council. Thank you for the opportunity to tell you about four people in my family, in stories that are in my new book.

A surgeon once told me I should have Lasik eye surgery. When I probed to learn more, she said I'd probably still need to wear glasses afterward. I said No. Another time, an ENT surgeon said I should have sinus surgery. I looked into it carefully, and then I said No. Instead, both times, I shared in the decision-making by reading, and asking questions about the effectiveness and the alternatives and side-effects. Then I chose non-surgical alternatives that were less costly. If patients can share in the decision-making, they'll make better informed choices, and sometimes they'll decide against surgery – which could save money for the whole system.

And near the end of life, a lot of people would choose hospice care, like we chose for my father, who was then in the final stages of Parkinson's Disease. That was better for him, and for us, and it must have actually saved money for the taxpayers too.

My very active Aunt Anne had always lived alone, in Denver, far away from the rest of our family. So she didn't have the family support that helps keep people healthy. She didn't like doctors much, but sometimes she'd see a doctor, just to get a prescription. Perhaps if her primary care provider had had a patient educator on a medical home team, they could have worked out some kind of agreement with her about regularly taking her medication. If so, it[s possible she could still be alive. She died from a complication of untreated diabetes.

My uncle Leon in Florida had a Type A personality. He loved to eat. I doubt he got much exercise. Over the years he developed heart disease, and after he retired to Florida, had multiple stents inserted by the hospitals there. If the system had paid his healthcare providers to keep him healthy, that could have moderated or prevented the coronary artery disease and his fatal heart attack.

So in my family, patient empowerment would have helped. Transparency would have helped. A public health focus on prevention would have helped.

I think many people have the same experiences as my family has had, but I think they happen so often that most people don't even notice them. There are so many people - maybe some in your family? -with diabetes, high blood pressure, asthma, or a substance abuse disorder, or a person who smokes, or drinks more than they should, or weighs more than they should, or doesn't exercise enough. Shouldn't the payment rules encourage providers to keep your family healthy?

The payment rules create a very subtle current that carries us in the wrong direction, so that providers and consultants who want to improve prevention have to make their way against the current, so they can't make much headway. Please fix the rules.

Too little and too much: Inappropriate treatment

On Tuesday, I had the great pleasure of participating in the kickoff of a group of 60 health care leaders who are coming together in the Aligning Forces for Quality (AF4Q) project in Eastern Massachusetts. The group is setting a bold goal to provide healthcare more appropriately. Barbra Rabson and Prof. Stuart Altman are the primary investigators on the planning grant awarded by the Robert Wood Johnson Foundation.

There are two kinds of inappropriate care: too little, and too much. In my own family we've had both, with great harm to my aunt and uncle. My Aunt Anne lived for many years in Denver, by herself, and enjoyed traveling widely and taking part actively in the city's cultural events. I never heard her complain about poor health, and we assumed she was fine. I only learned, after her death, that she had had adult onset diabetes. She herself had learned that only late in life, when she had a blood test before having cataract surgery. She hadn't trusted doctors, and had seen them too rarely. One day she complained to a close nurse friend of pain in her foot, and showed her the foot. Already black and gangrenous from the poor circulation caused by diabetes, much of it had to be amputated – which greatly reduced her mobility and crushed her spirit. Within a year or so, she had a fatal heart attack. When we cleaned out her possessions in her apartment, we found many pill bottles, each almost full. She would comply with a new prescription only for a couple of days, and if the medicine didn't work immediately, she apparently would stop taking it.

She got too little treatment, and too little education, for her diabetes. She didn't partner with her doctors, or any other health professionals, costing this vibrant woman years of life.

My Uncle Leon lived in the Washington DC area for most of his adult life. He trusted his doctor fully – to the extent of having him perform multiple angioplasties. Even so, he had several heart attacks. It's hard to believe that all of the angioplasties were appropriate. It seems he had too much inappropriate surgery, and too little effective education about self-care and prevention.

Neither Anne nor Leon received appropriate care. The partnerships they had with their medical teams were ineffective at keeping them healthy. The AF4Q brings together clinicians in hospitals with insurers, government agencies, and consumers. Hopefully this collaboration will strengthen the partnerships between doctors and patients, to make treatment more appropriate.

Read a story on unnecessary surgery.