Interview Contents:

• Introduction
• About the Book
• The Managed Care Factor
• Barriers to Good Patient-Doctor Relationships
• Advocating for Change
• The Growing Role of Information

Introduction

"It's an imperfect world. This book is about how to maximize the benefits and get what good you can out of the health care system," says Patient Centered Guides Editor Linda Lamb. "A lot of this has to do with people's attitudes about doctors. The fact is, doctors aren't gods and they don't have all the information, but they can be your best advocate for getting the most out of your health insurer."

Keene's unique background gives her the ability not only to examine patient-doctor relationships authoritatively from both the professional caregiver's and the healthcare consumer's points of view, but also to articulate them. She is particularly adept at globalizing what it takes to get one's bearings, negotiate care, and work with healthcare personnel. The author of several other healthcare titles including Childhood Leukemia and Your Child In the Hospital, Keene also participates in online pediatric cancer discussion groups, serves as a patient advocate in the Childhood Cancer Group (professional organization of pediatric oncology physicians, nurses, and researchers), and is a member of the board of directors of International Pediatric Cancer Alliance which keeps her on the front-line in the shifting healthcare landscape.

"This is a non-hysterical, non-confrontational approach based on real life situations," Lamb notes. "This book offers something for everyone:

• How to find the right doctor.
• Managing managed care.
• A range of options when your doctor has done something to upset you.
• Scripts for asking questions and raising issues.
• Web site resources.

About the Book

Houston:

Who did you write this book for?

Keene:

It's for anyone who has to see a doctor to remain healthy or who is sick and is trying to get healthy again. But I also think doctors can benefit from my book because the hundreds of personal stories really put a human face on medical issues. The doctors I know who have read the book really love the stories because they give the view from the other side of the bed.

Houston:

This isn't a new issue by any means. What other books about the doctor-patient relationship are out there and what do you think distinguishes your book from those?

Keene:

When I was asked to write this book, I did a literature search before I began because I thought it was probably a pretty well-covered area. People are very interested in doctor-patient relationships. Yet what I found surprised me. The books available tend to fall into two broad categories. One kind is what I call "patients-with-an-ax-to-grind" books. These are doctor-bashing, and even the titles of many of these books are adversarial. When you walk into any relationship with a chip on your shoulder, you're not going to get very far. You're certainly not going to form a partnership.

The other type, written mostly by doctors, I call the "watch-out-or-you're-really-going-to-get-bad-medical-care" books. Many of these books contain a lot of useful information, but begin with the assumption that as a patient, you have to defend yourself. I think that's counterproductive.

My book provides a much needed balanced view on patient/doctor relationships. It is about two human beings forming a partnership to work towards a common goal: good health. The relationship has to satisfy both parties to really thrive. It is chock full of practical skills to help you make that more likely to happen.

Houston:

What are your "credentials" on this subject, and how did the book come about?

Keene:

I was asked to write this book because of my extensive medical experiences and my "friendly advocate" philosophy. I've been a patient and a caregiver for over twenty years. I had a serious bicycle/bus accident in the 1970s that crushed my leg and my arm. I spent a lot of time in the hospital and in rehabilitation. I've also had numerous surgeries -- major, life-threatening procedures as well as many minor ones. Then my daughter was diagnosed with leukemia in 1992. For a few years we dealt with the medical world on an almost daily basis, either as outpatient or inpatient. Now our visits are much less frequent.

I've been on the other side, too. Although I've never been a doctor or walked in their shoes, I financed my way through the University of Virginia working in a hospital. I've worked in CCU (Critical Care Unit), the emergency room, and a blood bank. I also worked on a phlebotomy Team and an IV Team. I was a volunteer for many years on a very busy rescue squad running about 5,000 calls a year. I rose through the ranks there as an Emergency Medical Technician, Shock Trauma Technician, and then I became one of the first nationally registered paramedics in the country. I also taught advanced life support classes for several years. I've taken care of a lot of patients, both inside and outside the hospital.

I've spent much of my life thinking about medical issues, and one of my reasons for continuing to write about them is that I'm a big believer in the magic of a therapeutic relationship. It can sometimes make a difference between life and death, and always between comfort and fear. I try in my own way to help people discover and nurture that. All my books try to enhance what I consider the essence of medicine: the relationship between two human beings. That's not just doctors and patients; it's also nurses and patients, paramedics and patients; any medical caregiver who's dealing with someone ill or hurt.

For those dealing with life-threatening or chronic illnesses, having a good relationship with a doctor means the difference between living with fear, worry, and anger, or feeling cared for physically and emotionally. If you've never lived through that, it's hard to describe what a difference this makes, but it's an extraordinary difference.

Houston:

What do you think of the following statement as a summary of your book: "To get optimum health care as a patient in today's environment, you must shift from a passive to an active consumer role, determine exactly what you expect from your doctor, and equip yourself to make sure you're getting it or find another doctor if you can't get it."

Keene:

That's accurate. The first step is to examine who you are and what you need. A little self-reflection is necessary. For instance, I am an information seeker and I ask a lot of questions. I don't do well with doctors who prescribe without explanation. When I'm meeting a new doctor, I don't go when I'm sick, I go when I'm well. I tell him or her, "I just wanted to talk to you and see if we'd be able to work together well." I always say in the first visit what I need to be comfortable, that I often ask a lot of questions, and that I like to have a human relationship. Some doctors are just horrified. But there are a lot of doctors for whom medicine is an intellectual and emotional passion. On an emotional plane, they want to help people. Intellectually, it's fascinating and challenging for them. Those kinds of doctors enjoy patients like me because they get to explain the whys, they enjoy challenging, thought provoking questions, and we usually laugh a lot.

Here's an example of how I operate: The second day we were in the hospital after my daughter was diagnosed with leukemia, the doctor came in and said, "Is there anything I can get for you?" I asked him, "What pediatric oncology textbook do you and your students use?" He told me and I said, "I'd like a loaner, please." He just looked at me, so I said, "I'm not kidding."

When he gave it to me, he smiled and said, "It's pithy! If you have any questions, let's sit down and talk them over." Later, when I read my daughter's chart -- and I always read the chart -- he had written: "Mother asks innumerable appropriate questions." He always answered all of my questions. He would pull out the textbooks and show me, or he would pull out journal articles for me, and he always explained what he did. He treated my daughter with respect and kindness. He was a wonderful match for my family.

Houston:

What advice would you give to people who are not "fighters" or "information seekers" by natural inclination?

Keene:

This book is not just for fighters or seekers, it's for everybody. I included strategies for all kinds of patients. For those who aren't fighters or seekers, I have two primary suggestions.

The first is: Take time to choose your physician very carefully. Do your homework. Make sure the doctor you choose has excellent technical skills and make sure he or she is somebody you can talk to and whose philosophy is in harmony with your own. For instance, if you have a life-threatening disease, you may find someone who is very aggressive and wants to try all possible treatments, then explore experimental treatments regardless of the impact on quality of life. If this is what you want, then you have a good match. If, however, you would rather opt for a shorter, but possibly more pleasant life, you would not be comfortable with this type of physician. So, you need to choose wisely so that you can feel secure that leaving all of the decisions up to the doctor will result in medical care that makes you comfortable.

The second suggestion is to get an advocate. If you're not going to be pushing for yourself, then you need somebody to push for you, and not just when you're in the hospital. I think everybody should have a Living Will and a Medical Health Care Power of Attorney. Copies of these documents should be given to your health care advocate, each of your physicians, and members of your family. Do these when you're young and healthy, not when you're sick or upset. If you have decided in advance what type of medical care you want, your advocate can make sure your wishes are respected.

The Managed Care Factor

Houston:

Can some of the issues between patients and doctors be attributed to generational differences? In other words, would you have written the same book 10 years ago?

Keene:

That's an interesting question. I've been on both sides of the medical field for 25 years now, and I have to say that I think everything in this book would be the same except for the chapter on Managed Care, and portions of the chapter on "Questions to Ask About Tests, Drugs, and Surgery." Some of the information about confidentiality is also treated a bit differently.

Houston:

Can you elaborate on those?

Keene:

In the mid-1970s, there were only about six million people in this country enrolled in managed care insurance programs. Now the majority of people are in some sort of a managed care system - more than 70 million in 1997. Prior to managed care, in which the tendency is to provide fewer services to increase profits, most people had a fee-for-service system. The insurers paid for whatever tests or surgeries the doctors ordered and they provided no oversight on services. There was no incentive to contain costs, and the tendency was to over-treat, because the insurance company was not involved in the doctor's decision to recommend, prescribe, or order treatment. That was between the doctor and the patient.

Doctors over treated for one of several reasons. Sometimes they were trying to cover all the bases to give the best care possible. In some cases, they were paid according to the number of procedures they performed. And, as malpractice litigation increased, doctors over-treated to protect themselves. Thus, many factors came into play.

If I had written the chapter on "What Questions to Ask About Tests, Drugs, and Surgery" prior to managed care, the questions would have covered how to determine the risk-benefit ratio for suggested treatments, such as asking "Do I really need what my doctor is suggesting, and why?" With managed care on the scene and insurers calling the shots, the general tendency is to provide fewer services to increase profits, and doctors often have no say in that.

For example, insurance companies frequently determine which tests and surgeries doctors can order, which drugs can be prescribed, and they dictate how much time doctors can spend with patients. Many times doctors are under gag orders written into their contracts that allow them to discuss only those options covered by the insurance company. Sometimes, doctors are given lists called "formularies" that list which drugs they can prescribe. Their salaries, and sometimes even their jobs, are on the line if they don't toe the line for the insurance company. It's a completely different system from fee-for-service.

Therefore, the questions patients need to be asking have changed, such as:

• Are there any other options?
• If insurance company constraints were not an issue, what would you be recommending?
• Do you think I need a referral for this procedure?
• If not, what's your training and how many times have you done it?

These are things we never would have asked 10 or 20 years ago, but they're very important to ask now.

Doctors are, in some cases, being pressured in new and horrible ways by managed care organizations. Imagine what it is like to go into a profession because you truly want to help people get well, but now your salary is tied to keeping costs down (not offering services), gag rules in your contract (can only tell patients the approved treatments, not all of the options), limits on referrals to specialists, limits on the amount of time you can spend with each patient, and what drugs you can prescribe. Add in the increased amount of time spent on paperwork and telephone calls to non-medically trained utilization managers, and you have a recipe for massive stress.

Many patients have no clue that this is happening. They still assume that their doctor has only their best interests in mind when she makes recommendation. Hence, the need for this chapter on managed care. It was not meant to be startling, just accurate. If you know what the pressures are then you can stay alert, ask good questions, get the facts, and find the care you need, not the care your insurance group thinks you should have.

The other issue that has changed is confidentiality. Fifteen years ago, confidentiality issues would have centered on whether your doctor discussed your case publicly. Now information is now exchanged electronically, and is therefore not necessarily secure. Keeping private what you tell your doctor has entered a new realm. Does everything you tell him go into your chart and is it entered into an electronic database somewhere? To whom does it go? Most of us sign release forms giving permission to send information to an insurance company. This means a lot of really private information is being released electronically. Could this be used by insurance companies to determine whether or not they want to continue to insure you? Or could it be used by an insurance company in the future?

Although there is legislation attempting to address this issue, what will happen when you try to get insurance again in the future? Given the universality of electronic information exchange, keeping what you tell your doctor private is becoming increasingly problematic.

There is also an explosion of knowledge in the field of genetic information, which is wonderful for treatment but horrible for insurance. Let's say you inherited the gene for Huntington's disease. If your insurance company or a potential insurer finds out there is a 50 percent chance you could develop this disease, they're probably not going to want to insure you. You can see that confidentiality is a much bigger issue now, and there are some aspects that were never an issue 10 or 15 years ago.

Houston:

It brings whole new meaning to the term "preexisting condition."

Keene:

Absolutely! As a matter of fact, I'm currently writing a book for cancer survivors and I've talked to a lot of people who suspect they may have a genetic tendency toward cancer given their personal and family history. However, many of them are afraid to get tested because they don't want to lose their insurance.

Houston:

I'm aware that there's been a lot technology developed around electronic record keeping and records exchange. Is there anything patients can do proactively about mitigate negative implications?

Keene:

You can say to your doctor, "I'm going to tell you this, but I don't want you to release it." Or you can carefully read and amend any release form you sign regarding your medical information. One doctor whom I interviewed for the book recommends that his patients tell him what they want on-the-record and off-the-record.

Patients have to be able to tell their doctor the whole story in order to get appropriate care. I read an essay recently in the Journal of the American Medical Association written by a doctor about developing a vision for healthcare in the next millennium. On the issue of confidentiality he said: "We must have a system in which a patient can disclose his or her most intimate secrets without fear that those will be used against his or her interests or for the personal profit of another."

Houston:

I was startled by one piece of advice in your book pertaining to dealing with the realities of managed care. You write: "Never stay in a hospital by yourself." Tell me why you wrote that?

Keene:

I wrote that because the squeaky wheels get the grease. When you're sick or hurt, you sometimes can't think or communicate clearly. You may be on pain medication. You need an advocate, somebody who will go down to the nurses' station and say, "You know, that pain medication is wearing off. Can you bring some more?" Just having somebody there to help with the bedpan, answer the phone, or to limit visitors helps a lot. The need is greater now, since cost containment is king. Nurses have more and more patients to take care of, and there are fewer RNs and many more health care workers with less training working in hospitals than there used to be. Some insurance companies try to discharge you before you are ready to leave, and your advocate can go to bat for you.

However, despite managed care and confidentiality, the doctor/patient relationship is as old as time. We had shamans who were healers a millennia ago, and a lot of the basic issues are still the same. Most of the book deals with these basic issues.

Barriers to Good Patient-Doctor Relationships

Houston:

Could you summarize or highlight some of the biggest barriers in the doctor-patient relationship, from both sides?

Keene:

First, from the patient's side, a major hurdle to overcome is poor communication. People often don't give the whole story, or don't have time to give the whole story. This is particularly true when it's something intimate. It's just human nature not to bare your soul five minutes after meeting someone.

Another hurdle not often acknowledged is the fear of reprisal. People worry that if they're too much of a problem, or if they take too much of the doctor's time, they won't get good care. That's especially common in parents of sick kids and with older people. They don't want the doctor to get mad at them and they think that the doctor's time is more valuable than their own.

There's also a cultural problem of people viewing doctors as authority figures. It's hard to be straightforward and tell the whole story if you feel like a lesser human being. This can lead to big communication problems and getting the care you need.

Lack of time to develop a good relationship with your doctor can also be an issue. Some doctors spend a lot more time with patients than others. The Medicare pay/fee schedule pays doctors a lot more for doing procedures than it does for talking to people or doing a basic physical. In some managed care environments, doctors are required to see a certain number of people per hour. Group practices with rapid doctor turn-over also prevent developing an ongoing relationship with one doctor. And, of course, if a patient goes in with an adversarial attitude, its going to be very difficult to establish a satisfying partnership.

Houston:

And from the doctor's side?

Keene:

Again, poor communication is a major issue. One study videotaped doctors' visits and found that patients were interrupted 69% of the time within the first 90 seconds of the visit. Then, when the patient answered the question, only 23% of people went back and tried to finish their thought. Very few people got to complete what they wanted to say.

Lack of time is a problem from the doctor's side, too. If you've got "x" number of patients and you've got a lot of things to discuss with each, that's a problem. What I do is write out a prioritized list of the things I want to talk about. I always start with the most important, and if time is running out, I say, "If you need to leave, let me know, and I'll make another appointment to finish items 6 through 10."

If the doctor has a paternalistic attitude and you don't care for that, there is an automatic barrier to forming a good relationship. There are many such reasons for poor matches. I know people who like to get in and out of the doctor's office quickly, with little discussion and a prescription. If you go to a doctor who likes to give explanations and discuss issues with you, it just is not a good match.

Houston:

In your book you include a discussion of rights and responsibilities for both sides. What led you to this approach?

Keene:

I started out trying to cover patients' rights, but I was very uncomfortable trying to write the chapter that way. Patients' rights don't exist in a vacuum. Patients have rights and responsibilities; doctors have rights and responsibilities. So I decided to do both. Conflict tends to occur if either party focuses only on their rights and what they feel they're due rather than what they need to do to contribute. I chose to start first with doctors' rights because I believe most people overlook them.

For instance, every doctor has a right to be treated with courtesy and respect. Why should doctors have to see a succession of people all day long who are nasty to them? People who are sick are sometimes not at their best. If they're not even making an effort to be polite, it makes for a very difficult workday for doctors.

Doctors also have a right for patients to tell them the whole story. They have a right to expect patients to comply with a mutually -- that's the important word -- mutually acceptable treatment plan.

There are a lot of ethical codes for doctors but there aren't any ethical codes for patients. I think that would be an interesting topic for someone to write about.

Advocating for Change

Houston:

I understand that you once organized a conference between doctors and patients to address some of these issues.

Keene:

Yes, I did. The last day of my daughter's treatment for leukemia, I asked the doctor how soon I would get the results of her bone marrow aspiration, which may determine whether or not the treatment was successful. If there's no cancer there, you can go home and celebrate because you're finished with treatment. If there are cancer cells present, then you don't celebrate because it didn't work. So you really need to hear the news as soon as possible.

When I asked the doctor, she told me this was at the bottom of the pathologist's priority list, therefore I wouldn't hear for several days. That's a long time to a parent. But I don't engage with people like that. Instead, I went over to the clinic to see the director. I asked her if she would look at the results if she had time because I needed to be able to eat and sleep. "Absolutely!" she said. She called me that afternoon to tell me that the cancer was gone.

After I thanked her, I asked her if she had another minute and we ended up having an hour and a half conversation about my views on how both the doctors and parents were letting children down. My comments were centered around pain and communication. "You know, this facility is seriously behind the times in treating children's pain," I told her. "You're doing bone marrow aspirations and spinal taps and torturing little kids, when there are excellent, short-acting and very safe pain-killing agents that you could give them to take away that part of this experience. The reason why you probably don't do this is because you don't know how terrified these kids are and how much the pain impacts their daily lives. And there's two reasons for that: you're too busy to ask, and we're too traumatized to tell. So both of us are at fault. "

Then I offered my suggestion (I try to never complain without making a suggestion). I offered to get a group of educated, articulate parents together at the facility for a conference with the whole oncology staff. Her initial response was, "I'll see what I can do, but I don't know if they're going to go for it." But she set it up and it was very well-received. Five parents came and we just talked about our experiences with our children. Then we made suggestions. And the clinic changed their pain policy. They started evaluating every kid and sedating those whom they felt needed it for painful procedures, which was almost all of them. I think this really opened their eyes.

Afterwards, I had coffee with a couple of doctors who asked me if I realized what a chance they were taking by coming to the conference. "We thought you were going to come and attack us." I was surprised and sad that they felt threatened. I explained that I felt it was a joint problem and that if we worked together to address it, the kids would benefit and all of us had the same goal: to help the children survive and thrive.

Houston:

Have you done anything else like that since?

Keene:

I still go and talk at hospitals and conferences occasionally, but most of the time I try to reach out through my writing and through interviews. I am also a daily participant on several Internet support groups. I'm one of the old-timers on the first lists for parents of kids with cancer. About five years ago there were very few groups online discussing cancer. But the numbers swelled dramatically. The Association of Cancer Online Resources currently offers over 70 cancer electronic support groups. More than 600 families from all over the world participate in the pediatric oncology cancer lists.

Houston:

Do doctors ever participate in any of the Internet discussion groups?

Keene:

Yes, they do. And since we recognize that doctors don't have very much time, we've instituted categories on the subject line. If you're talking about coping, you put "Cope," or if it's a general matter, like jokes or just chatting, you put "General." For medical questions we have "Med," and most of the doctors only read and respond to those. The doctors don't give medical advice or prescribe, but they often answer general questions in great depth.

I've also talked to several doctors who never participate but they read, which is just as effective in my book, because they're still getting the patients' views.

Houston:

Are there any larger organized efforts to address the doctor-patient relations issue?

Keene:

There have been several pieces of patients' rights legistlation in congress recently. The book contains a draft of "The Consumer Bill of Rights and Responsibilities" formulated and presented in November 1997. We as a society need to recognize and accept that there are limited resources. We need an evidence-based, compassionate system to allocate those resources. Everybody can't have everything.

Anything we can do to strengthen the doctor/patient relationships and get the insurance companies out from the middle will help. I do think consumers are going to push the changes. It's not going to trickle down from the top. I'm expecting the pendulum to swing the other way as the baby boomers age and interact with the medical system more. We're more opinionated, we ask more questions, and we demand more services. We're going to see insurers forced back from this maximizing profits stance toward balancing health needs with reasonable profits.

The Growing Role of Information