Transcription
Time for morning rounds. From stem cell therapies to editing our genes, we've seen no shortage of medical breakthroughs in recent years. But these developments also raise ethical issues, and so do policy decisions about the kind of care people get and how precious resources are allocated. It is all discussed in the new book, "Everybody Wants to Go to Heaven but Nobody Wants to Die." And we are joined by the authors, Dr. Amy Gutmann, the president of the University of Pennsylvania, and Dr. Jonathan Moreno, a Penn professor. We welcome both of you. Thank you so much.
First of all, two questions here: What is bioethics, and why did you decide to both write about it?
So, everybody cares about healthcare, and everybody's making decisions about healthcare all the time. And sometimes they're really hard decisions for ourselves and our loved ones. And that's really what bioethics is about. And what we want to do is make sure people are informed and prepared before crises happen. And I found out about that the hard way when I was just 10 years old. When on a routine visit to my grandma with my mom, we found her in extreme distress. She was totally aware but in enormous pain. We rushed her to the emergency room. The next thing I knew, my mom was confronting a doctor who asked my mom for permission to amputate my grandma's leg. And, you know, my mom said, at the spur of the moment, "You need to get her permission to amputate her leg." And she told me afterwards that she never would have forgiven herself had she not done that. So we want everybody to be prepared and informed about much greater decisions that exist.
Now, when we started writing the book, we realized we both had stories like this in our families. And you're of a certain age, you remember those days, the black bag-toting doctor came home, and is very compassionate. We were talking about this before. House calls, you know, you've got a couple of points remembering the term. But at the same time, the relationship between the doctor and the patient was often kind of one-way, right? Now, people have more information, and they expect to be more part of their decision-making. And that's a lot of what we write about.
You also write about dialysis and how the government determined in the '70s that people would get dialysis treatment, Medicare paying for it, because this was life or death. But that plays into the bioethical debate now with other things.
It does. And, you know, we, of course, it's wonderful that we take care of dialysis patients, people who have end-stage renal disease. We also, though, 40, 50 years later, start to take more seriously the fact that we're not covering well people who have other serious diseases. And so part of what we want to do in the book is to try to stimulate, in this very partisan era, a conversation about how we go about taking care of everybody who has a serious illness, and not just a particular group that's been kind of marked out historically.
What, in your estimation, has to change right now? You talk about Obamacare, and you, you were against repeal and replace. You say it should be revised and reinforced. So, what, what about the healthcare system right now needs to be changed, and what doesn't?
So, we really believe that if Americans take more control over their own healthcare and the healthcare of their country, things will go...
How do I do that?
Well, many ways, and you can read the book. But one way, which we talk about, is that patients should come prepared when they go to their caregivers, their doctors, and physicians, and be prepared. Be open about what you're doing with your healthcare, and also be clear about your goals. It's, it's also something you talk about in the book is asserting yourself and asking those questions. And if you're not getting the answers, continue to ask and and and probe to find out exactly what's happening to one of your relatives or yourself. Most doctors are very concerned, obviously, about their patients. They want to succeed. They want to be good healthcare providers. They want their patients to prosper and thrive. But in an era in which there are so many options, patients need to be really more part of that conversation.
I want to talk about some of the more experimental treatments, the gene therapies, the you see so much in terms of technology, big data. I mean, where are we going, or where should we be going?
Well, we're big proponents of innovation and affordability, both. And we think we can have both. One great example is, which is representative of what's happening with immunotherapy and CAR T-cell therapy, is the case of Emily Whitehead. Who, seven years ago, really, all the treatments for her leukemia were used up, all the standard treatments. And her parents, Tom and Emily Whitehead, had to decide whether basically she was going to die because that was the case, or to look for something experimental. And they chose the latter. They found CAR T-cell therapy. It happened to be at the University of Pennsylvania, but it's now, now no longer an experimental treatment. It's actually FDA-approved. Emily is a 14-year-old cancer-free young woman who has become a champion with her parents.
Race all kinds of fuels. Yes. And it's just balancing some of those things. I'm sorry that we're out of time. A great debate to continue, and a great book for people to read. This affects all of us. It does. Not, it's easier to read than we know. Thank you so very much. Thank you.