My Dad, my dog, and me: Testimony on legislation for patient engagement in decision-making

Chairman Sanchez, You asked that we speak from the heart. My three-minute testimony [June 14 at the Massachusetts Statehouse] is about my Dad, my dog, and me.

I'm Ken Farbstein, past President of Health Care for All’s Consumer Health Quality Council, and the author of Getting Your Best Health Care: Real-World Stories for Patient Empowerment. Thank you for this opportunity to support "An Act Promoting Patient Engagement in Health Care Decisions," H.1495/S.1078.

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, we'll make better informed choices, and sometimes we'll decide against surgery – which could save money for the whole system.

This week I brought our dog to the vet, asking about a lump on his front left elbow. The surgical consult, and the two later phone discussions, were much more clear, specific, factual, and useful than those two surgical consults I'd had about my own surgical decisions. Our veterinarian provided written materials about the preparation for surgery, follow-up, and costs, none of which the human surgeons had provided.

In a very different realm, near the end of a person's 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. He had seen his own mother's long and heart-breaking struggle with Alzheimers' Disease, and so he had written a living will, when he was age 63, still full of vim and vigor, to clearly lay out his wishes against death-prolonging treatment. That calm forethought was characteristic of the man he was. Hospice care was better for him, and for us, and it must have actually saved money for the taxpayers too.

When you go to buy a car, the dealer has to clearly display the mileage per gallon on a window sticker. When you buy a refrigerator, you can see its Energy Star rating. That gives you critical information that you wouldn't otherwise know at that moment. But surgical operations are arranged with no clear written statement of their effectiveness, likelihood of repeat operations, complication rates, alternatives, or patient satisfaction levels, not to mention their price. A one-page statement should report that information before surgery.

I think many people have the same experiences that my family and I have had, where you are presented with options about health care choices, or perhaps not presented with options but told what to do, and you feel vulnerable and unsure about how to make a decision. Shared decision-making would educate patients and their family members, and get doctors to understand patients' concerns and hopes, so that together we can come to the most appropriate treatment decisions. Many people talk about patient empowerment and patient engagement. Please pass this bill to make that a reality.

Read my book's chapter on Choosing Surgery.

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.

There can be a big payback: Testimony on Massachusetts state funding for patient safety

This was my testimony today on state funding:

Secretary Bigby, Commissioner Auerbach, and other executives,

Thank you for the opportunity to testify.

I'm Ken Farbstein, President of the Consumer Health Quality Council of Health Care for All. We'll submit more formal written testimony to add to this personal oral testimony.

Our Council is mostly people who had a serious medical error in their own family. At our last meeting, my friend Kim came and told us about his mother's death from a hospital acquired infection. (I'm glad the DPH is reporting those, as that can persuade hospitals to become safer.) And we heard from another man, Lee, whose girlfriend died needlessly in a hospital. If the Rapid Response Methods section of the law had been in place then, and if he knew about it, she might well be alive today. (I'm glad that DPH can collect information about hospitals' use of Rapid Response Methods.) One of our long-time members didn't come to our last meeting, because her new leg prosthesis was still uncomfortable. She needed one after more than 20 operations following a very serious hospital-acquired infection.

Yesterday a work group of our Council reviewed the hospitals' plans for their Patient and Family Advisory Councils, required by Chapter 305. We were happy to learn that consumers on one hospital's advisory council got the hospital to extend visiting hours to 7x24, so family members can be with their loved ones when they're most vulnerable and afraid. If all hospitals plan and conduct these advisory councils, a lot more good ideas like that will become reality. If DPH can help make those ideas known – IF they have money for someone to look, and discover them, so much the better.

I firmly believe that reporting errors keeps providers more mindful of the need to make their systems safer. It doesn't take much of DPH's time to gather and report that, and there can be a big payback. Of course, DPH needs the funding to keep doing that. I hope you give them, and the Betsy Lehman Center, what they need.

Advice: It's a citizen's job to keep his mouth open.

Read another story about Chapter 305 testimony.

You have to ask patients: Testimony of the Consumer Health Quality Council

This was the testimony I delivered before the Joint Committee on Public Health of the Massachusetts State Legislature on June 23:

Thank you for the opportunity to provide testimony on House Bill 2084 and Senate Bill 909, An Act to Reduce Medication Errors in the Commonwealth.

I'm Ken Farbstein, the President of Health Care for All's Consumer Health Quality Council. Nineteen years ago, my wife was about to give birth to my son, in one of the Harvard teaching hospitals. Way up in the same building, we heard that doctors were treating one of the princesses of Saudi Arabia, who was there because the hospital had such a great worldwide reputation. But our team of doctors made a really basic misdiagnosis. My wife got the wrong drug for 12 hours, and she didn't get any pain medication for the first 12 hours she was in labor. We never formally reported either one of these two medication errors – our son was in the NICU for three weeks, so we couldn't think about anything else. I'm bringing up this story now to make a simple point: The vast majority of medication errors are never formally reported within the hospital. To find out about them, you have to ask patients.

Other Consumer Council members have also experienced medication errors that were never reported as such. One member was given a medication by a neurosurgeon that brought on a seizure, even through she told the doctor that she had experienced seizures in the past and knew this medicine was related to their occurrence. Another Council member was never given pain medicine following a surgical procedure, even though she requested it and her doctor had approved its use. A third Council member contracted an intestinal infection as a result of being given multiple antibiotics while hospitalized. To learn about many medication errors, you have to ask patients, and the expert panel required in this bill can do that.

Back in 1999, there was tremendous shock when we learned from an IOM study that 98,000 people were found to be dying of medical errors every year (14,000 of them from medication errors). Then seven years later, we were shocked, again, to learn from the IOM that 1.5 million people a year suffer injuries from preventable drug errors.

We need to fix this. We need an independent panel of experts – which this bill requires - to review what has been learned, what works, and to make formal recommendations within a year, and then embed them in law and ensure that there are sufficient reporting and oversight mechanisms to stop the harm to people and the waste of money.

Thanks for your consideration.

Advice: Together with your supporters, tell your legislators what you care about.

Read our testimony on another bill, or see the short video of the testimony of Health Care for All President Amy Whitcomb Slemmer, and Council members Ginny Harvey, Lucilia Prates, and me.

Thanks to Deb Wachenheim for her legwork in organizing our panel for the hearings.

The fine print excluded nearly all the treatments: Aetna’s limited benefit insurance policy & bankruptcies

Lawrence Yurdin is a 64-year old computer security specialist. He had insurance through Aetna – a "limited benefit" plan, which, in hindsight, was not worth the paper it was printed on. Or, more precisely, as Aetna spokesperson Cynthia Michener said, "Limited benefits aren't right for everyone, and it clearly wasn't right for Mr. Yurdin." Aetna further acknowledged that his age and condition – an irregular heartbeat – made it likely that he would require more comprehensive coverage.

Lawrence learned this the hard way when he went to the hospital for two separate heart procedures last year, and two more procedures later.

While the Aetna brochure indicated he had purchased $150,000 of hospital care, the fine print excluded nearly all the treatments he received in the hospital, according to today's front-page story by Reed Abelson in the New York Times. With his unpaid medical bills approaching $200,000, he had to file for bankruptcy around Christmas time.

His case is common: three-fourths of the people who file for bankruptcy because of medical bills actually had insurance. As Harvard Law School Professor Elizabeth Warren says, "People do not realize that they are one diagnosis away from financial collapse."

A highly instructive expose by recent insurance executive Wendell Potter about these and other sneaky tactics used by large insurers appears in his testimony at U.S. Senate hearings last week.

Advice to people with a limited benefit health insurance policy: Read the fine print carefully. Maybe you should dump your insurance company before they dump you.

Advice to government legislators and regulators: Suntan lotion bottles must show their Sun Protection Factor prominently. Consumers know that a high SPF will protect them much better than lotion with a low SPF. A simple number that rates the Bankruptcy Protection Factor (BPF) of limited benefit insurance policies will keep consumers from getting badly burned by shoddy insurance products. Or maybe "B" will stand for something else…

Read about another cruel insurance practice.

Each of us has had a serious error: Testimony on patient councils for hospitals

Here is the testimony to the Massachusetts Executive Office of Health and Human Services that I delivered this afternoon on the health care law that Gov. Deval Patrick signed on August 15:

Dr. Bigby, Mr. Wilkinson, and Commissioners,

It's very late in the day, and I appreciate your patience in hearing our testimony on Chapter 305.

I'm a member of Health Care for All's Consumer Council. Each of us has had a serious error in our family.

We're very happy with the quality sections of the newly signed law, Chapter 305, and urge you to request a lot of money in your departmental budget for the next fiscal year for monitoring hospitals' reporting of serious events and hospital infections, and encouraging rapid response teams in hospitals.

In the interest of time, I'll focus on hospital patient and family advisory councils. Elsewhere in the country, these councils have greatly raised patients' satisfaction levels. And, since patients are trained on how to care for themselves, fewer need rehospitalization, and fewer come back to the E.R., after leaving the hospital. So there can be big cost savings, too, IF people receive solid training on how to be effective council members. At a few thousand dollars to train a team at each of the 70 hospitals in the state, that comes to a few hundred thousand dollars. That money would be well spent.

Thanks for your consideration.

Advice: Look for opportunities to create and influence laws for patient partnership.

Read another story about testimony on Massachusetts legislation.

I’ve used my unexpected fame: Last Lecture of Prof. Randy Pausch

Carnegie Mellon Prof. Randy Pausch was diagnosed with pancreatic cancer, and was invited to give a last lecture. It is now widely available on the Web.

After I gave my lecture in September, I expected to go home and quietly spend time with my family. I never imagined that my talk would be viewed online by millions worldwide. The response has overwhelmed and moved me. Thousand of people have written to me about their life lessons. I've also been buoyed by former students who've told me how my teaching made a difference to them. There's no greater gift for a teacher.

I've used my unexpected fame to advocate for pancreatic cancer research. Last month, I testified before Congress to seek funding for my disease, which is considered the deadliest of cancers.

I've had great fun too. In my lecture, I told of two childhood dreams: playing in the NFL and being Captain Kirk on Star Trek. Strangers fulfilled those wishes. I was invited to scrimmage with the Pittsburgh Steelers and got to say a line in a new Star Trek film. Both experiences were thrilling.

I'm lucky to be living longer than I expected, allowing me more time with my kids. I've tried to do unforgettable things with them – such as swimming with dolphins – so they'll have concrete memories of us and of my love for them.

I am honored that my lecture will live on and that people have found it beneficial. Honestly, though, the talk was for my kids, and it gives me comfort to know that they will one day watch it.

Advice: Say your most essential messages before it's too late.

Browse for related stories in the index at the very bottom of this page, or see a video of his moving congressional testimony last month.

Thanks to the writers of Parade Magazine for the source article in their April 6 issue.

He was told to find his own way, he testified: Access to care

Wearing a black eye patch, Sgt. John Daniel Shannon testified to a House committee, convened at Walter Reed Medical Center in Washington DC on March 5. He described how he’d been struck in the head by a bullet from an AK-47 in November 2004 near Ramadi, Iraq. The injury caused a traumatic brain injury and cost him his eye.

He was returned to the U.S., and was already moved out of the hospital within a week of his injury. Though he still was extremely disoriented, they handed him a map and told him to find his own way to his new residence on the hospital campus. There, he waited several weeks for someone to contact him and tell him how to get additional treatment. He eventually called people himself until he reached his case worker. Staff in the bureaucracy lost his paperwork several times, and each time the brain-injured soldier had to start over.

So do we!

Advice for patients with complex needs: If your case worker doesn’t contact you promptly, perhaps you should demand a caseworker who will.

Advice for citizens: Express your opinion to the Commander in Chief at 202-456-1414.


Read our related Patient Safety Quiz, or read Michael Luo’s article, “Soldiers Testify over Poor Care at Walter Reed,” in the NY Times.