Q&A with Marge Ginsburg: What We Talk About When We Talk About Health Care

The Center for Healthcare Decisions has given itself a tough task. Its staff tries to bring together people from different economic brackets and get them to talk in very specific terms about all facets of health care.

Marge Ginsburg founded the center in Sacramento in 1994 and has served as the organization's executive director since then, helping it tackle thorny issues like end-of-life care, coverage priorities. The non-profit Center's funding comes from the California HealthCare Foundation, Kaiser Permanente and hospitals affiliated with Catholic Healthcare West and Sutter Health. This conversation was edited for space and clarity.

Q: Why did you first start using CHAT (Choosing Healthplans All Together)?

A: It was developed by two physician ethicists. They knew that you need to get the public to understand how insurance works. Health insurance is a pretty complicated and a pretty boring subject for the lay person. So they came up with this brilliant idea to make it a game. It started out as a big pie chart, and people were able to choose different pieces of the pie and were forced to give up other pieces. And it's grown from there. I discovered it in 2002.

Q: And from there you started to develop "What Matters Most"?

A: We started doing the CHAT sessions in 2002 using a computer game with public and private employers and their employees. We did 71 sessions in the Sacramento area. We got all these employers to volunteer employees on company time. We learned some neat things about where they make tradeoffs. The magic is that people really start thinking communally. How do we do this? We know we can't get everything that meets our needs individually, but how do we do what's best for the group? In the fourth round, they go back to their own computer and get to design their own plan again - but this time it is informed by their conversations.

Q: There's also something called a lottery, right?

A: After round two they have the health event lottery. You have designed the plan you like and then you hit the lottery button and up comes a medical situation, because health care is always a gamble. You might have picked primary care doctors in Tier Two, and you get to see the consequences of your choice.

Q: What's an example of where someone was surprised by what came up in the lottery?

A: We had a category called catastrophic. If you picked Tier One, then something horrible happens all of a sudden. You are hit by a semi or get an aggressive cancer. Tier One might offer coverage for all medical services provided proven to be effective. Tier Two might offer more money: if everything else has failed, you could try this one last thing. It's not proven to work but it might in your situation -= the Hail Mary pass in healthcare. A lottery card might say you were thrown from a horse and doctors were able to stabilize you and you might fully recover. But you've lost your eyesight, and there doesn't seem to be any treatment except a new experiment that has a 2 percent chance of working. If you pick Tier One you get everything up to that. If you picked Tier Two you would get that treatment.

Q: I would think that people would be worried about revealing too many details in these sessions about their personal lives, for fear they might not be able to get health insurance in the future or even that they don't want their neighbors to know.

A: We even had human resources people sit in on some of these conversations, and that didn't stop people form talking about their personal situations. It's an amazing atmosphere of trust. Overwhelmingly the reaction usually is "somebody cares what I have to say." And that overcomes any sense of resentment they might have about doing (health insurance) cutbacks.

Q: What about with end-of-life care? Did people talk about their own experiences?

A: On occasion we would have somebody get teary-eyed if the situation got too close to their personal experience. People are respectful, even if they have radically different views. We had hundreds of different phone calls after the Terri Schiavo case, including from folks who feel strongly that all life has value, even when they are in a permanent coma. They may be very vocal but they are not very many. That isn't where most of the tension is. Most of the interesting discussions around this whole issue are about hospice care versus staying in the ICU while patients die. Most people stuck with the idea of patients being moved into hospice care, instead of staying in the hospital on the off-chance that they might live a few more weeks.

Q: I wonder about the phrasing of some of your questions. By asking something like, "Is the gain worth the expense?" you are putting an ethical dilemma in monetary terms. Aren't you stacking the deck a little?

A: That's no accident. Ultimately the whole issue of how we spend our society's dollars is an ethical issue. There is far more we can spend on health care than we have money to spend or desire to spend. And everyone is affected. We are all paying for it in some way. So the question is what do we feel is the fairest and most responsible way to handle this if we can't buy everything.

Q: And they don't understand it because despite all the hand wringing about how much health care costs, most people don't see that cost because they pay a very small premium relative to the total cost.

A: I think until people actually really have to pay out of pocket, they tend to ignore it. And the work we do isn't necessarily supported by everybody. Many of the single payer advocates believe we shouldn't have to make any of these difficult tradeoff decisions. If only we get rid of the private insurance plans and filthy rich CEOs and pharmaceutical companies that are gouging everybody, that would solve the problem, they think. They don't necessarily think the kinds of processes we are using to get the public to start looking at priorities makes sense.

Q: In 1997, your group published the ECHO Community Recommendations , which recommended new end-of-life care guidelines based on conversations with more than 1,000 people. The response to that was pretty overwhelming, right? You've had requests for more than 6,500 copies of the recommendations for hospitals nationwide. Why did it strike such a chord?

A: This was just pure timing. That's when the Supreme Court was weighing in on two states dealing with physician assisted suicide. It said if you don't want it in your neighborhood then the health care providers need to figure out a way to make death and dying a more compassionate event. It was a wake- up call to the health care community to change the way people perceive end-of-life care. Since then this whole movement toward palliative care in hospitals has really jumped, particularly in California. Even (President Barack) Obama in a recent interview said that one of the big areas we need to concentrate on is end-of-life care.

Q: You have a new report coming out from your What Matters Most work. What were some of the surprises in the results?

A: We haven't released the results yet. The first phase was the 1,000-person phone survey. Then we took those results and held group discussions to talk about what made the high priorities high and the low priorities low. I can tell you that erectile dysfunction wasn't the very lowest, but that's about all I can tell you.