NEAL CONAN, host:
This is TALK OF THE NATION. I'm Neal Conan in Washington.
A little over a week ago, 13-year-old cancer patient Daniel Hauser disappeared with his mother in an effort to avoid court ordered chemotherapy for his highly curable Hodgkin's lymphoma. Daniel and his mother returned home on Monday and agreed to resume treatment tomorrow. Many states have laws to require parents to provide necessary medical care for children. But when it comes to adults, the ethical and legal rules are quite clear: People have the right to decline treatment, even if that results in death.
And people say no for a lot of different reasons: mistrust of the medical system, quality of life issues, religious conviction, even financial pressure can be part of it. If this is your story, if you've ever declined a treatment your doctor said was critical, if you've ever participated in that decision, tell us why. Our phone number: 800-989-8255. Email us: firstname.lastname@example.org. You can also join the conversation on our Web site. That's at npr.org. Click on TALK OF THE NATION.
Later in the hour, we'll talk to one half of a couple who's pledged to spend a year buying from only black-owned businesses. But first, why have you refused treatment? Dr. Josh Ammerman is a neurosurgeon here in Washington at the Washington Neurosurgical Associates, and he joins us by phone from his office. Nice to have you on the program today.
Dr. JOSH AMMERMAN (Neurosurgeon, Washington Neurological Associates): Nice to be here.
CONAN: And your field requires you to prescribe treatments that can be - well, perceived as unpleasant, and that's probably putting it mildly, things like chemotherapy. When you explain this to people, some will decline treatment.
Dr. AMMERMAN: Yes. Certainly, we've dealt with that in the past. Many of the diseases, as a neurosurgeon, that we treat, unfortunately, we can't cure, such as malignant tumors of the brain. And the critical issue there is not necessarily quantity of life, but quality of life.
CONAN: And people say quality of life, I don't want to have these treatments that are going to make me feel terrible.
Dr. AMMERMAN: Well, it's a certainly legitimate concern. And much of the time that I spent with my patients with malignant brain tumors is not trying to convince folks, but rather giving them the information. Hopefully, they come to their own conclusion that what we're going to do for them is safe, will not impair the function that they already have - meaning if I have a patient with a malignant brain tumor who's walking around, talking, spending time with their family, maybe even working, that what we're going to do for them is going to permit them to continue to do that and not take away their ability to engage in doing the things that they want to do.
CONAN: And be able to do them for a longer period of time.
Dr. AMMERMAN: Precisely - things like brain surgery, which carries certainly substantial connotation with it, chemotherapy, even radiation to the brain can be done in ways that improve patient's quality of life. Patients with, for example, large tumors that are developing weakness on one side of the body, removing a substantial portion of that tumor can give them some strength back. Using radiation can shrink tumors, take away headaches. And those sort of things let them have, again, a better quality of life for the time that they're with us.
CONAN: Are there other reasons that people have given you for declining treatment?
Dr. AMMERMAN: Sure. One of the cases that sticks out most in my mind, following a tour of the religious line of things, I had a very, very nice lady who was a Jehovah's Witness, who needed a very large brain operation. And I anticipated that there was up to a 50 percent chance that she might need a blood transfusion as a result of that. And she made it very clear to me that under no circumstances was I to give her any blood products or anything else from another person, and that she wanted to have her surgery, and if blood loss became an issue that she might pass away, die from that, she would rather take that position. And that was certainly something that was difficult for me to deal with that as a surgeon, as a physician, as someone who takes care of patients. But you have to honor your patient's wishes.
CONAN: And as you in the end, did she need that transfusion?
Dr. AMMERMAN: She did fine in the end.
(Soundbite of laughter)
Dr. AMMERMAN: I'm happy to report she did fine in the end. But there was certainly some anxiety on our part, that if we got into that position, what would happen? Would we - we would, of course, follow her wishes. But to see a patient, you know, you can say pass away, is not something that I wanted to deal with.
CONAN: And, of course, follow her wishes. Would you have been tempted? She's a presumably in that situation - you know, out, under anesthesia. Would you just do it?
Dr. AMMERMAN: I certainly wouldn't. I've a belief that we do for patients what they want. We give them or explain to them the risks, and they can make educated decisions. And if a patient is totally - they don't want something done, I'm not going against their wishes, unless I feel that at the time they made that decision, they weren't capable.
It's no different than a patient who may come in to my office - an elderly patient with a lot of medical problems and they have a spinal disorder. They can't walk. They're wheelchair bound. They have spinal stenosis, a narrowing of the spinal column. And they've been told by a number of folks, oh, I don't know that you're going to survive surgery. And I've certainly had folks like that come in and say I have no quality of life. I can't live like this. And if they tell me that, is there anything you can do for me doctor?
(unintelligible) neurosurgeons are certainly similar. The answer is: If you are willing to assume the risk and understand the potential outcomes, then we're going to do the best we can for you.
CONAN: We're talking with Dr. Josh Ammerman about the situation where people refuse treatment, treatment that could save or extend their lives. 800-989-8255. Email us: email@example.com. And Norman's on the line with us, calling from Cleveland.
NORMAN (Caller): First of all, I want to compliment your screener. She's great. Wonderful show. My mother - a blessed memory - in 1977 or 78, came down with ovarian cancer while she was hiking in the mountains north of Mexico City. She was 71. She had never been a sick day - she had never had a sick day in her life. The time before that she had been in the hospital before this was for my birth in 1946. And she tried one - or she tried a couple of chemotherapies, and all it did was slow the cancer down.
It didn't stop it. It didn't reverse it. And the doctor said, well, you know, you might have, you know, a year or two of this. And my mother said, I don't want to kill myself to stay alive. And she was gone in four months. And I miss her very much.
CONAN: And what do you think about her decision, Norman?
NORMAN: I support it. She was a very vital woman. Here she was at 70. Before she went to Mexico City, I was playing tennis with her. She was a phys-ed teacher. She was a very, very vital woman. And this is what she wanted to do, and I don't blame her. I'm certainly not going to hold judgment. Had she wanted to continue the therapy - you know, she felt and the doctors agreed, you know, that - she said it was the worst nausea that she had ever had in her life.
CONAN: And Dr. Ammerman, obviously, you don't know the details of Norman's mother's case, but you must have run across similar kinds of things.
Dr. AMMERMAN: Of course. And I think it's important to remember that there are, for example, chemotherapy regimens that are very toxic and make patients feel awful. There are also chemotherapy regimens, radiation regimens, surgical procedures that don't necessarily make you feel quite so bad. And it's just important not to make blanket statements. And you need to have an honest and frank discussion, as it sounds like his mother had with her physicians, and make an educated decision and not simply make a blanket statement about how you're going to handle a given disease.
CONAN: Norman, we're sorry for your loss, and we thank him for his call. Here's an email from Lee in Boston. I am concerned with quality of life and have refused the standard treatment for clinical depression, osteoarthritis and high cholesterol. I found alternative methods to deal with these problems. The side effects alone are enough for me. The way doctors treated me was another. I was not listened to and respected by them.
Dr. AMMERMAN: Now, if I may comment on that.
CONAN: Go ahead.
Dr. AMMERMAN: That's a very concerning thing to hear. And that is a problem that we see all too frequently in health care is physicians who don't listen to their patients. It is not a question of making a decision for a patient. It's a question of educating a patient, listening to them, considering them as an individual in the context of their problem, and helping them arrive at a solution that works for them. If you don't listen to the patient, if you treat them like something out of a cookbook, you may treat their disease but you're not necessarily helping that person. And that's not what we're here for.
CONAN: And let's talk with Molly(ph). Molly calling us from San Francisco.
MOLLY (Caller): Hi.
CONAN: Go ahead, Molly.
MOLLY: Thanks for taking my call.
MOLLY: Hi. I was interested in the program because I have had breast cancer twice. The first time I elected to take the chemotherapy treatment. And the second time, I didn't and I had the battle of my life convincing the doctors that I was making a sound judgment.
CONAN: And what's the prognosis?
MOLLY: Well, basically what comes down to is they tell me I have a 30 percent chance of the cancer coming back without treatment after surgery and a 20 percent chance of the cancer coming back with treatment. And the treatment is to me toxic enough that I just decided it wasn't worth the risk. And I don't really believe the numbers and the science behind it. I feel like it's not really the best course of action for a healthy recovery.
CONAN: Why don't you believe the numbers?
MOLLY: I think the science is a real (unintelligible). I've done my own research, and I feel that the science is based in a real push to use chemotherapy. I don't think it looks at alternative treatments enough.
CONAN: Dr. Ammerman?
Dr. AMMERMAN: Well, that may be the case. You know, as physicians we can only go with the best data that we have. And certainly chemotherapy regimens have been well studied. You're right at least for the disease that I'm involved with, alternative medicines are not well studied. It sounds like you've been presented with the information. You've made an educated decision, and that is perfectly reasonable. For some patients a 10 percent potential improvement is dramatic. And for them, they want to take that. And for some patients, 10 percent is nothing.
MOLLY: Yeah. Yes.
Dr. AMMERMAN: And I think that if you're presented with the information as you've been, you can make an educated decision. And that's not unreasonable.
CONAN: And Molly, this must weigh on your mind, though?
MOLLY: No. It doesn't too much. It was mostly weighing on other people's minds who really don't question chemotherapy as a choice. They believe that whatever options you can take, you should grab. And they don't - you know, they don't look into it further as I did. It's mostly my family members that had a hard time with that.
CONAN: Are those mostly people who've not had chemotherapy in the past?
MOLLY: That's right. That's right.
(Soundbite of laughter)
CONAN: Molly, we wish you the best of luck.
MOLLY: Thank you.
CONAN: Thanks very much. And Dr. Ammerman, we need to thank you for your time today.
Dr. AMMERMAN: Thank you very much. It's been a pleasure.
CONAN: Josh Ammerman is a neurosurgeon at Washington Neurological Associates here in Washington, D.C.
When we come back from a short break, we're going to be talking about - more about this - about people who've declined treatments their doctor said was critical. If that's your story, if you know about a story, somebody in your family, give us a call: 800-989-8255, e-mail is firstname.lastname@example.org. Stay with us.
I'm Neal Conan. It's the TALK OF THE NATION from NPR News.
(Soundbite of music)
This is TALK OF THE NATION. I'm Neal Conan in Washington.
And we got this e-mail from Barbara Scott in New Mexico. In 1986, I had life-saving abdominal surgery. Recovery from it was excruciating and took six months. When my intestines shut down 18 years later, I refused to go through that surgery again. The doctors applied pressure on me to submit to surgery but I refused. My question was, what will you do with me once you have me open? They couldn't give me any answer other than, look around. I told them I would take my chances with my natural healing mechanisms. Eight days later, everything started working again. And I saved myself thousands upon thousands of dollars and at least six months of recovery.
Our focus today is on the many reasons people refuse medical treatment that could save their lives or extend their lives. If this is your story, if you've ever declined a treatment your doctor said was critical, call and tell us why. 800-989-8255. Send us an e-mail. The address is email@example.com. And you can join the conversation at our Web site, that's at npr.org. Click on TALK OF THE NATION.
Josephine Johnston is with us now. She's a lawyer specializing in bioethics and health law. And nice of you to be with us today.
Ms. JOSEPHINE JOHNSTON (Research Scholar, Hastings Center; Lawyer): Thank you very much.
CONAN: And Josie, I wonder what's the range of reasons that people give when they decline treatment?
Ms. JOHNSTON: Well, I think you've touched on some of the reasons already (unintelligible) their fears about or the what they know to be the risks and side effects of the treatment. And sometimes it's also a risk-taking decision. So the woman you had who - for whom a 20 to 30 percent chance, that 10 percent difference wasn't enough. That's a really personal decision as well. But you also have people who just don't believe the medical data that they're presented with or who have other alternative approaches that they want to pursue.
One of the things I thought might be interesting to talk a little about if you're interested is that while we have this group of people who make these very clear refusals to follow treatment or to undertake treatment as advised, there are also people who simply don't follow treatment regimens. And it's not exactly a conscience refusal to undertake the treatment but just they start the treatment and then they maybe don't completed or they - it gets too expensive. And that's sometimes talked about as, is called sometimes non-compliance. When people do sort of in principle agree to a treatment but then they actually don't turn up to all their appointments. And there can be a huge range of reasons for that situation occurring.
CONAN: I should identify Josie Johnston as a research scholar at the Hastings Center which is dedicated to studying bioethics. She's also a lawyer who specializes in health law, and is with in Fishkill, New York. And I'm sorry for not identifying you properly at the beginning. As you go through these reasons, well, people are adults. People can make these choices.
Ms. JOHNSTON: That's absolutely right. And your physician who was on earlier was absolutely on the button when he said that that (unintelligible) adults have a right to refuse treatment. What we're talking also about, though, are reasons that people refuse treatment or don't comply with treatment that aren't always a decision made with all the freedom that we would wish.
So, sometimes when people don't comply with treatment or refuse it based on, for instance, cost, that might be one of those reasons that we wish was different. And it's not because they don't believe in the treatment but that they just can't afford it. Or sometimes when people don't turn up to their appointments or don't fill a prescription because they couldn't get to the pharmacist or they couldn't get time off work, those kinds of reasons are different than the ones where people make an informed decision that they really don't want to undertake a particular regimen because of its risks or because they don't believe the benefits is significant enough.
And so, some of the reasons that we're talking about when people don't comply with the treatment is because of situations that we really should probably try to do something about, whether it's through education or trying to work in a way to provide services to them that are convenient to them or affordable to them. So, it's, I think, important to differentiate between the kind of in-the-light-of-day reasons and the ones that are to do with circumstances or lack of understanding that we really could try to address.
CONAN: And I want to also put that - flip that - the ethical burden around. I was interested in Dr. Ammerman's answer when he talked about the patient who, for religious reasons, said, I don't want a transfusion. Whatever you do, don't do the transfusion. I would rather die. And he said, well, of course, we have to obey the patient's wishes. Don't doctors take a pledge, the Hippocratic Oath, do no harm?
Ms. JOHNSTON: Well, I'm not actually sure that they necessarily do take that pledge, but certainly that's a guiding principle in medicine. And so, if you were going to undertake a surgery that you were concerned in the end might not work out, you know, you'd be weighing the do no harm versus the wanting to give a benefit to a patient. Certainly that would be high on your list of concerns.
But when - the flipside of do no harm is to try to help as much as possible. So, when - as Dr. Ammerman was saying, you know, he really tries to listen to patients and really educate them thoroughly so that they understand fully what the decision that is in their hands.
And I think that's really the most important kind of obligation in these instances is to try and make sure that as much information and as many services are available to the patient who's making these decisions, so that when they decide not to follow a treatment, they're really doing it with as much information as possible. And they're not doing - they're not making their decision because they can't afford it or because it's inconvenient for them to get to appointments or they can't - something that we could actually try to help with.
CONAN: Sure. Let's get some more callers on the line. And we'll start with Nancy(ph). Nancy, calling from Minneapolis. Nancy, are you there?
NANCY (Caller): Yes, I am.
CONAN: Go ahead please.
NANCY: I am. I did refuse medical treatment for an aggressive squamous cell carcinoma on my face a year and a half ago. And I just want to say the reason -I had a couple of reasons for doing that. One, I was diagnosed and then the doctor - they did a big - a biopsy, and the doctor was out of town for three weeks. And I was anxious about waiting.
But one thing that encouraged me to refuse the treatment and try something else is that I have a friend who was diagnosed with advanced pancreatic cancer 25 years ago. And she elected to do a program that was called the Dr. Kelly program, where you do tons of pancreatic enzymes with chymotrypsin.
And she actually, you know, she did the raw juices and all of these, like 50 pancreatic enzymes a day. And she did cure herself. But - and they were going to do a surgery on me that was about two inches by an inch and didn't how deep they would have to go. And so, I heard about a cream from Australia and England, that's used in Australia a lot because they have, well, they have, I guess, the highest cancer - skin cancer rate in the world.
And I did send away and get it, and I used that for a number of weeks. And it did - at that point, the cancer in my face was like a third of an inch, like, circle. And then when they did the biopsy, then it really grew. Before that, it had been like just a little - like a little pimple that came out of nowhere. So, when I put the cream on, within a week, it just took that down right even with my skin and then started drilling down.
And then after using that for a number of weeks, I switched to another cream called P.D.Q. cream, and that's available here in the U.S. And wherever you apply it, if there's pre-cancer or cancerous tissue, it will react in…
CONAN: So, Nancy, are you clear of cancer now?
NANCY: I'm clear of cancer.
CONAN: And so, would you recommend to other people that…
NANCY: Well, I think the public is frustrated with the fact that in this country the power of the pharmaceutical companies really discourage any real research. And I don't know why we're not turning to some of the clinics that are having success with alternative treatments to see what they're doing and…
CONAN: And when you say you're clear of cancer, did you check with the doctor?
NANCY: Well, I didn't. But it's been a year and a half and there's no trace. I mean, there's just nothing there.
CONAN: This kind of skepticism, Josie Johnston, do you hear it from a lot of people besides Nancy? Josie, are you there? And apparently we've lost the line to Fishkill, New York. Nancy, we thank you very much for the phone call and we wish you continued good luck.
NANCY: Yes, thank you. And I like to say, I wish that we would open more research and a feeling of openness and welcomeness to alternative treatments. And thank you for the opportunity.
CONAN: Sure. Go ahead. And here's an email we got along the same lines, from Lark(ph). I had surgery and chemo last year for a fallopian tube cancer, same as ovarian. Should it recur, I think I'd go to a clinic in Germany where they use many other kinds of treatment including hyperthermia, which is never even heard of in traditional, quote, unquote, "medicine" in which our, quote, unquote, "system" would probably punish doctors for using here. And I think Josie is back with us on the line now.
Ms. JOHNSTON: I am.
CONAN: And we're just trying to respond to some of these people who have so much skepticism about what they refer to as traditional medicine.
Ms. JOHNSTON: I think there were a lot of interesting points raised by the caller and the email. One of them was a different kind of reason that we didn't touch on, which is that people often make decisions based on what's happened to their family and friends. So not necessarily what they've read in a scientific study, but what they've heard from individual people they know or sometimes things they find on the Internet.
So, I mean, people definitely use different sources to make decisions. And I guess - and the physician's dilemma is how do you deal with a patient who's citing their family and friends to you as reasons to refuse? And I guess they just have to try to both give respect to that decision - to that source, but also try to deal with - try to provide other sources of information. But she also - the caller also touched on another issue, which is, I think a source of frustration with that medicine knows and what scientific research studies. So it's true that most of the studies that take place are looking into treatments that are manufactured by pharmaceutical companies or other - or device companies, and not so much into natural remedies or things that don't have a lot of money behind them, because someone has to pay for the study to happen.
And if the government isn't going to pay for it, then it's going to be paid for by the companies who make the products that the study is looking at. So I think that's a legitimate frustration.
CONAN: Now, let's go next to Chris, and Chris is with us from Cortland in New York.
CHRIS (Caller): I have to agree with Dr. Ammerman completely in that - well, first off, as a surgeon, I did take the Hippocratic Oath way back when. But secondly - listen, I'm talking to patients all the time about different types of cancers - breast cancer, colon cancer - typically, as a general surgeon. But I think - but more importantly, you give them a diagnoses. There's a swirl of emotions. People don't deal with it well. And you have a conversation with them and you educate them.
And I'll tell, quite frankly, listen, this is the board certified answer. And most younger patients will see us for treatment, ask for opinions, take referrals and whatnot. But older patients, you also say, hey, listen. There's some real life issues, here. I'm not going to ask you for the board certified answer. I'm going to ask you to tell me what the best answer is for your situation. And you know what? You honor that, as long as you're confident that they are making the best decision for themselves.
CONAN: And do you talk to them? Do you essentially try to talk them out of decisions you think are ill-advised?
CHRIS: No. I don't talk them any which way. You educate them. Listen, this is the treatment. And the treatments can be harsh. Go talk to your consultants before you make a decision. You know, take some time. Don't take a month. Don't take a year. But, you know, let the emotion of the moment pass. Make a clear-minded decision, understanding that there's benefit to treatments. The treatments may offer - well, they can be unpleasant, you know, loss of hair, some surgery, some pain, you know, whatever. But make the best decision for yourself. In older patients, I'll ask them to make a decision carefully, not to make a snap decision.
CONAN: And when patients ask you about, well, creams or therapies with which you're unfamiliar, what do you do then?
CHRIS: That's actually an easy one. I tell them, just being board certified, on some level there's a test tube that people have put a process or - I don't know, a drug or a therapy through, and I can tell you that it works or doesn't work. But there's a body of experienced residents elsewhere, and I can't endorse it. And if they can find something they're happy with, that's fine. But I can't endorse it one way or the other.
CONAN: Okay. Chris, thanks very much.
CHRIS: Thank you.
CONAN: Bye-bye. We're talking about why people refuse what could be life-saving medical treatments. You're listening to TALK OF THE NATION from NPR News.
And let me reintroduce Josephine Johnston, a lawyer specializing in bioethics and health law, a research scholar at the Hastings Center, which is in New York, and joining us today from Fishkill, New York.
And let's get another caller on the line. This is Bob, Bob with us in Acton, Massachusetts.
BOB (Caller): Hi.
CONAN: Hi, Bob.
BOB: Am I on the line?
CONAN: You are.
BOB: Okay. I just wanted to call in - I've listened on the radio. I have - I had a son who was born with heart disease. He had an operation at three months, and then he had a heart transplant at age nine. And long story short, he required re-transplantation at age 19, at which time he was emancipated, he could make his own decisions, and he refused and died.
And I think that a lot of people don't understand how difficult transplantation is or post transplantation is, and how much - especially a young person - how much pain and suffering they go through. And I know his mother and I assumed that the original transplant was a cure, even though they told us it wasn't. And, of course, it wasn't. And I just think there's a lot of misunderstanding about the psychological and physical difficulties that people go through after transplantation - at least cardiac transplantation.
BOB: Anyway, that - I just wanted to pass that along.
CONAN: And, Bob, obviously, we're very sorry for your loss. Did you talk to you son about this decision?
BOB: Oh, sure. I went down and spent time with him. I went down every weekend. He was living in Atlanta. And he just decided that it wasn't worth going through it again. And his mother and I talked to him at some length, but his - and the doctors tried to dissuade him, as did priests, but he was just convinced that it wasn't worth it.
CONAN: And, Josie Johnston, these are decisions - again, he was 19. He was an adult. He could make those decisions.
Ms. JOHNSTON: That's right. As soon as you are past that age of maturity, you can make those kinds of decisions. And I think they must be incredibly painful, especially for parents when a child, or a, you know, a grown-up child makes that kind of decision, because no parent wants to see their child die before them, certainly not under these kinds of circumstances. But it sounds like the son managed to convince his parents that he was making a decision that he himself was happy with, and that must have been some comfort to them.
CONAN: Bob, again, we're sorry.
BOB: Well, thank you.
CONAN: Bye-bye. Here's an email from Andrea in San Francisco: Can a patient with limited insurance benefits refuse treatment due to his inability to pay? For some people, it may not be worth sending the family into bankruptcy due to high medical bills - which I hear is the second-greatest cause of bankruptcy in the United States - for a treatment that may not prolong life or increase the quality of life. And again - well, again, there are adults that can. But does that situation arise a lot?
Ms. JOHNSTON: I'm not sure how often it arises, but I'm sure it arises more than we would want it to, and especially - and perhaps even more in the last few years than previously. And that's one of those really tragic reasons. Certainly, I think there are some limits on the amount of money that anyone would - where people can spend on things. And certainly, if you think about it from a point of the state, if the state's paying, it may have to decide that there are some things that are just too expensive for it to do. But that situation, there's - I mean, of course you can make a decision based on cost. But it's one of those decisions that is really quite painful for me to hear about, because it's a decision I wish wasn't - I wish that wasn't a reason. I wish that reason didn't have to be there.
CONAN: Josie, thanks so much for your time today. We appreciate it.
Ms. JOHNSTON: You're welcome.
CONAN: Josephine Johnston, a lawyer specializing in bioethics and health law, as well as a research scholar at the Hastings Center, with us today from a studio in Fishkill, New York.
Coming up: buying black. We'll talk with Maggie Anderson about why she spent a year shopping only at African-American businesses and picking up supporters - and critics - along the way. Stay with us.
I'm Neal Conan. It's the TALK OF THE NATION from NPR News.
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