Choice in Conventional Cancer Therapies
Choosing Conventional Physicians, Hospitals, and Therapies
After 10 years of listening to hundreds of cancer patients tell their stories, I have concluded that many patients choose an oncologist, surgeon, or radiation therapist with less care and less comparative shopping than they would put into the choice of a new car.
How you choose a new car and how you choose physicians is not as far-fetched an analogy as it may seem. Most of us do not know a lot about the technology of automobiles. But when we decide to buy one, we usually go to considerable lengths to try to identify the best car for us. We read the Consumer Reports comparison of the different makes and models. We talk with friends who own the car we are considering and ask about their experience. We may talk with a mechanic about his opinion. We may rent the car to see what it is like to drive. Or we may simply test-drive the car at the dealer and visit some other dealers to test-drive other cars we are considering. For an informed car buyer, purchasing a new car may take a number of weeks, if not several months. This is entirely reasonable: it is a major purchase and you will be living with the car for some time.
Consider, then, the process by which the same person chooses a surgeon, oncologist, or radiation therapist. Apart from being in shock from a cancer diagnosis, a patient is often overcome by a sense of personal incompetence in making the pressing medical decisions. Obviously, he is making a choice that is far more important than choosing a new car, and yet all his confidence in his capacity to assess technologies that he does not understand deserts him. Culturally, Americans have what might be called a pattern of learned helplessness when it comes to choosing physicians and treatments. We sense that it is somehow illegitimate and embarrassing to shop for quality medical care with the same attention that we shop for a new car.
Even my father–an assertive and highly intelligent man, with boundless curiosity–had trouble in the early days after his diagnosis finding his own balance in the doctor-patient relationship. In his book Wrestling with the Angel he writes: “Few patients have more than an inkling, on their own, of the knowledge and experience needed for intelligent decisions. Most, like me, start as medical illiterates. The traditions of the profession call for the specialist or internist to deliver the verdict and recommend the decision, and the patient to accept it.”1
He then comments on the implications of these traditions for the patient and for himself:
The let-the-doctor-do-it model relieves the patient of incentive and responsibility. When we leave all the decisions to the doctor we surrender part of our fighting faith in our survival and healing. We may do it because we are awed by expertise, or because we think we don’t know enough, or because we lack the courage to engage in a doctor-patient dialogue. But this model assumes a passivity on the patient’s part which was alien to me. Within the larger frame of the doctor’s medical authority I sought a measure of patient autonomy.
There can be no grandiose role here. It would be hubris for me (my parents would have called it chutzpa) to place myself above specialists who have devoted their lives to clinical practice and are in touch with current research, and to substitute my own judgements for theirs. No, the province of autonomy I sought was more modest, quite simply to inform myself–by every available means–to play whatever role came to me, because it was my life and my death.
Reading over my journals I am struck by how long it took me to assert this role. The torment of choice was pretty much what every patient with a dangerous illness endures. I had to learn how to resolve the often conflicting advice from my array of doctors and consultants, including my doctor son in Boston and my “behavioral son” in Bolinas. At each crisis point they all became sources of “input” to balance against each other when there was a conflict between them. Nor did I mind if they didn’t pull their punches. “If I want to hear someone’s opinion,” said Goethe, “it must be expressed positively; I have ambiguity enough in myself.” I was in the realm of conflicting judgements and values. I needed the input to resolve my own ambivalence and end in decisive outcomes.
Once I had the assessments and recommendations of my consortium of doctors, I was the one who had to take charge. When a difficult choice had to be made, no one else could assume its burden. I had to carry it, not because of knowledge or experience but for the existential reason that my life was at stake.
My doctors recognized how much it meant to me to have the chance to disagree, as well as agree, with them. They knew also that a patient who becomes part of the decision process thereby becomes part of the healing process as well.2
How to Choose a Physician
One of the best resources on how to choose a cancer care doctor is a book called Choices: Realistic Alternatives in Cancer Treatment by Marion Morra and Eve Potts. Chapter 2, “Deciding on Your Doctor and Hospital,” provides a comprehensive checklist and encourages patients to recognize that they do not have to remain with the physician they currently have. The authors recommend choosing (a) a cancer specialist who practices in a one-specialty group or hospital; (b) a cancer specialist affiliated with a hospital; and (c) someone who is board-certified in his specialty. They provide equally good checklists on assessing a doctor’s manner with patients, how his office is run, his personality, his willingness to discuss fees, his accessibility, and the insurance arrangements he makes.
The authors present a similar checklist for hospitals and recommend (a) a “comprehensive cancer center” designated by the National Cancer Institute (NCI), if there is one in your area; (b) hospitals that have cancer programs accredited by the American College of Surgeons; and (c) hospitals directly or closely affiliated to medical schools. They note that a quarter of American hospitals are not accredited at all; that care at government-supported hospitals ranges from excellent to poor; that, with a few exceptions, for-profit hospitals frequently have limited services; and that larger hospitals usually have more services.3
Choices and similar books are widely available, and I highly recommend that you read at least one of them.
Informal Networks: Allies in Choosing Cancer Specialists
Formal medical advice on how to choose a cancer specialist in your community usually suggests you contact the American Medical Association (AMA) and ask for a listing of cancer specialists; ask the NCI for access to a similar listing; or contact the chief of a department of surgery, oncology, or radiation therapy at the most prestigious cancer treatment center in your area and ask for his advice. This is not bad advice, but the AMA and NCI can usually give you only alphabetical lists of specialists, and the chairman of the department is often under considerable political constraints about telling you whom he would choose for care.
I find it striking that conventional advice about choosing a physician rarely points cancer patients toward some of the most skillful approaches: the use of informal networks of people who really know which cancer specialists in a given community are the best. For example, in choosing a surgeon, the best people to ask would include (a) other surgeons, (b) anesthesiologists who work with surgeons every day; (c) operating room nurses or physician’s assistants; and (d) cancer patients who have undergone surgery. In choosing an oncologist, the best people to ask would include (a) other oncologists, (b) surgeons and radiation therapists who work with oncologists, (c) oncology ward nurses or physician’s assistants, and (d) cancer patients. In choosing a radiation therapist, the best people to ask would be (a) other radiation therapists, (b) surgeons and oncologists who work with radiation therapists, (c) radiation therapy service nurses or physician’s assistants, and (d) cancer patients.
Physicians as a Resource
Physicians can tell you what the professional reputations of their fellow practitioners are. This can be very valuable advice. However, the primary problem with accepting their advice alone is that they have never been under treatment with the physicians they are recommending, and they rarely work directly alongside them (the exceptions are anesthesiologists, who work with surgeons). Also, many cancer specialists have regular relationships with specialists in other cancer treatment disciplines. They refer their patients to a colleague who reciprocates by sending patients their way. This practice of “trading material,” as it is sometimes irreverently known, can be the result of great mutual respect for each other’s skills. But it may also have a financial motivation. So the referral of a cancer specialist is not always the best way of identifying the most suitable physician for you.
You can identify physicians to help you either through the formal approach described above or through your personal contacts with family doctors or physician friends, asking whom they know who would be able to advise you. Often a family physician or internist who does not specialize in cancer can serve as an ongoing trusted advisor as you make your way through these complex choices. Engaging your family doctor–or some physician you trust–to serve as treatment coordinator for you has an additional advantage: it may spare you the common experience of modern or “fractionated” cancer treatment, with no doctor providing continued human contact and long-term evaluation.
Nurses and Physician’s Assistants
The advice of nurses and physician’s assistants is invaluable and underutilized.êThey work directly with the surgeons, oncologists, and radiation therapists, either in the hospital or in outpatient offices. Hospital nurses, particularly, have no vested interest in the choice that the patient makes among physicians.
An experienced operating room nurse knows a great deal about the surgeons in his hospital–from their technical skills to their human skills. Equally important, an experienced operating room nurse has less constraints on giving you his honest opinion about whom he would choose if it were a member of his family than a physician. The same holds true for the advice of experienced radiation therapy nurses about radiation therapists.
The evaluation of an oncologist by nurses and physician’s assistants is somewhat more difficult because the skills of the oncologist are more variegated than a surgeon’s or radiation therapist’s skills. Here, the nurse can tell you how careful an oncologist is, how committed he is to his patients, how humane he is, and so forth. It is more difficult to evaluate his choice of chemotherapy protocols.
It is usually easy to reach an experienced nurse who can be of assistance. You may know a nurse who knows a nurse who knows someone who works in one of the cancer specialty services, and this nurse in turn might either be able to help you or could identify the most experienced nurses in his service. The same holds true of physician’s assistants, except that they are fewer in number.
Cancer patients are also a good source of information. No better place exists to get a lot of information quickly about which physicians are respected by cancer patients than at an independent cancer support center in your community. Cancer patients may also be able to point you toward physicians who helped them choose cancer specialists and toward nurses who may be helpful in making these choices. Obviously, cancer patients cannot readily evaluate some areas of medical skill, but being on the receiving end of these services they know a great deal that is invaluable.
Some people with cancer are skilled networkers in other areas of their lives. They may also have the closely related skill of moving effectively through bureaucracies. Once they realize that these information-finding and bureaucratic skills are applicable to the choice of a medical care team, they need little guidance to apply these skills. But other cancer patients need help with networking and bureaucratic maneuvering. In this instance, a willing family member or friend who has these skills can be of inestimable assistance in identifying good doctors, hospitals, and therapies and ensuring delivery of good care.
Take Time to Make the Right Choice
If you adopt the above strategies of choosing a physician, you will find that the names of certain physicians begin to recur. Using both formal and informal networks, it should take no more than a week or 10 days of concentrated effort to make an informed choice. Taking a week or two to choose the right physician will very rarely jeopardize your treatment or your health. Most physicians would agree that taking time to find the right doctor may be one of the best investments you can make.
Establish a Working Relationship with Your Doctor
Once you have found a doctor who looks promising, how do you establish a good relationship?
Harold Benjamin, Ph.D., founder of The Wellness Community in Santa Monica, California–one of the most successful independent support programs for cancer patients in the United States–has developed a written pledge for cancer patients and their physicians (see below), Benjamin has strong support from most oncologists in the Los Angeles area. The pledge is a productive approach to clarifying communications between patients and physicians. I recommend considering it, and possibly bringing it with you to an early meeting with your doctor, explaining that it is a cosignatory pledge agreed to by many patients and oncologists in Los Angeles and elsewhere and asking if it might serve as a basis for an understanding between you and him.
Once you have found the right physician and established a working relationship, you then face the choice of treatment. Different patients have different preferences about whether they want (a) their physician to make the choice of treatments essentially without consulting them; (b) the physician to play the primary role in choosing therapies but to do so in close consultation with them; or (c) to make the primary choices themselves, using their physicians as consultants only. Be clear with your doctor about which of these three models you wish to work with. Such an understanding is very helpful for establishing a good working relationship.
The Wellness Community Oncologist-Patient Statement
The effective treatment of serious illness requires a considerable effort by both the patient and the physician. A clear understanding by both of us as to what each of us can realistically and reasonably expect of the other will do much to enhance the outlook. I am giving this “statement” to you as one step in making our relationship as effective and productive as possible. It might be helpful if you would read this statement and, if you think it appropriate, discuss it with me.
As your physician I will make every effort to:
1 Provide you with the care most likely to be beneficial to you.
2 Inform and educate you about your situation, and the various treatment alternatives. How detailed an explanation is given will be dependent upon your specific desires.
3 Encourage you to ask questions about your illness and its treatment and to answer your questions as clearly as possible. I will also attempt to answer the questions asked by your family; however, my primary responsibility is to you, and I will discuss your medical situation only with those people authorized by you.
4 Remain aware that all major decisions about the course of your care shall be made by you. However, I will accept the responsibility for making certain decisions if you want me to.
5 Assist you to obtain other professional opinions if you desire, or if I believe it to be in your best interests.
6 Relate to you as one competent adult to another, always attempting to consider your emotional, social, and psychological needs as well as your physical needs.
7 Spend a reasonable amount of time with you on each return visit unless required by something urgent to do otherwise, and give you my undivided attention during that time.
8 Honor all appointment times unless required by something urgent to do otherwise.
9 Return phone calls as promptly as possible, especially those you indicate are urgent.
10 Make available test results promptly if you desire such reports.
11 Provide you with any information you request concerning my professional training, experience, philosophy and fees.
12 Respect your desire to try treatment that might not be conventionally accepted. However, I will give you my honest opinion about such unconventional treatments.
13 Maintain my active support and attention throughout the course of the illness.
I hope that you as the patient will make every effort to:
1 Comply with our agreed-upon treatment plan.
2 Be as candid as possible with me about what you need and expect from me.
3 Inform me if you desire another professional opinion.
4 Inform me of all forms of therapy you are involved with.
5 Honor all appointment times unless required by something urgent to do otherwise.
6 Be as considerate as possible of my need to adhere to a schedule to see other patients.
7 Attempt to make all phone calls to me during the working hours. Call on nights and weekends only when absolutely necessary.
8 Attempt to coordinate the requests of your family and confidants, so that I do not have to answer the same questions about you to several different people.
The Wellness Community Oncologist-Patient Statement. (Courtesy of Harold Benjamin, Richard Steckel, Laurence Heiftez, Daniel J. Lieber, Fred Rosenfelt, and Michael Van Scou-Mosher, The Wellness Community, Santa Monica, Calif.)
For choosing conventional therapies, some excellent resource books are available about both choice in cancer in general and specific choices for specific cancers. Choices by Morra and Potts, which I discussed above, is one of the bibles in this field and includes some discussion of complementary cancer therapies as well. The book covers diagnosis, deciding on a physician and hospital, understanding cancer, diagnostic tests, all forms of conventional treatments, investigational treatments and unproven methods, all the major cancers, coping with recurrence, living with cancer, and where to get help. The section on where to get help is one of the most complete available.
Another valuable resource available to patients is the NCI’s 1-800-4-CANCER phone line that provides a wealth of primary information on therapy choices. Numerous booklets are also available from the NCI and the American Cancer Society that provide patients with basic information about treatment choice.
Also, the R.A. Bloch Cancer Foundation, created by H&R Block, Inc. co-founder Richard Bloch, operates a computerized cancer information network called Cancer Forum through which patients can communicate free of charge with each other or with volunteer researchers. The foundation also operates the Cancer Hot Line at 816-932-8453, which provides newly diagnosed cancer patients with the opportunity to talk with people who have had cancers similar to their own.
The Power of Information: Understanding Cancer Treatments as Physicians Understand Them
Some cancer patients have both the skills and the desire to develop a basic understanding of choices in cancer treatment by reading the same literature that their physicians refer to. This is not as difficult to do as many patients fear. Other patients may assign this task to a family member or friend. If there is someone–yourself or a support person–who is willing and able to read the medical literature, it can make a profound difference in your ability to make informed choices. Often, it will also change the relationship between your doctor and yourself.
Here are some simple approaches to getting medical literature:
Go to a medical library–at a medical school or cancer treatment center–and ask for the most widely used cancer textbook, Cancer: Principles and Practice of Oncology, edited by Vincent T. DeVita, Jr. (Philadelphia: J.B. Lippincott Co., 1989). It is a two-volume bible on all the cancers and all the major phases of treatment. Look up the chapter on your cancer. Make a photocopy of the chapter (the chapters are often 50 pages long) so you can take it home with you.
Consider buying a medical dictionary if the medical vocabulary is a problem for you. A number of medical dictionaries explain in simple English the meaning of most medical terminology.
Find a way to obtain three to five of the most recent review articles discussing your specific cancer and the treatment options. A “review article” is an article in which one of the leading specialists in your type of cancer reviews all the recent studies and summarizes what is known about treatment. If you have a cancer in which there are significant treatment choices–such as the choice between surgery and radiotherapy–ask for review articles by specialists in both fields, since the surgeons will have a different bias than the radiotherapists and you want to understand both perspectives. Asking your doctor if he can help you obtain the most recent review articles on your cancer–after having told him that you have read the chapter on your cancer in DeVita’s textbook–will signal to him the kind of patient you are. The review articles can be obtained by your physician, a reference librarian at a medical library, a number of the medical consulting services, and possibly through the NCI hot line.
If you have a rare cancer or want to go even deeper into technical treatment choices–or if you have more obscure questions about specific cancer therapies–find a friendly person who has a computer with a modem hooked into one of the medical databases, such as BRS Colleague. (Medical reference librarians can do this.) With his computer and phone link, he has access to the entire cancer literature of the world, and with a few simple search words he can track down in seconds the articles on your obscure or difficult subject. He can then display the titles of these articles on his screen. He can print these titles out, look at them, and circle the titles for which you want to read the brief abstracts. He can go back into the database and ask for these abstracts, which he can print out for you. You can read the abstracts and then order the full text of any article you want from the service. In some instances, the database has the full text available for immediate printout through the computer.
The same computer database also gives you access to two NCI databases: the PDQ database on treatment choice for patients and the PDQ database for physicians on current clinical trials involving your type of cancer. The PDQ physician database is more interesting, and you can access it. It lists all current clinical trials for your type of cancer, including complete details about who can qualify, what the investigational therapy is, possible side effects, etc. It gives the name of the chief investigator and his phone number.
With all of this information, it is possible for you or a member of your family to reach a very sophisticated level of understanding of available cancer treatments. But even if you only take the first step–reading the chapter in Principles and Practice of Oncology about your specific type of cancer and options, you will have moved much further into understanding your cancer as your physician sees it.
Avoiding Serious Mistakes and Getting the Best out of Large Medical Institutions
One thing everyone wants to avoid is needless and sometimes life-threatening ‘iatrogenic’ (“physician-caused”) complications from treatment. These mistakes are, unfortunately, increasingly common as medical treatment becomes more aggressive, more complex, and more bureaucratic. Large complex bureaucratic systems are intrinsically prone to error; hospitals or busy medical practices are no exception. To avoid potentially serious treatment errors, you or your support person should consider monitoring your treatment carefully so that you are more likely to catch mistakes your medical team may make. Monitoring can also help you to catch mistakes that you make through misunderstanding treatment recommendations.
There is more to obtaining quality treatment than monitoring to avoid mistakes. Large institutions, such as hospitals, are intrinsically more likely to deliver quality treatment to people with skills in extracting better outcomes from these institutions than to people who quietly put themselves at the mercy of the system. So it becomes very important to be an effective advocate for your own quality care.
The need to monitor treatment often begins before the first exploratory surgery. It is often a good idea, for example, to engage an oncologist in advance of surgery, so that he can help you with the choices a surgeon may not fully explain. Oncologists may bring out important choices for the patient that may alter plans for surgery in significant ways.
After surgery, if you need chemotherapy or other adjuvant treatment, you need to keep an eye on what the oncologist or radiation therapist is recommending and whether he is providing you with all the information you need. Oncologists and radiation therapists–good ones especially–are often tremendously busy, and they rarely keep your situation constantly on their minds. Many independent cancer support groups play a critical role in facilitating the exchange of information on subjects like surviving chemotherapy, which allows you to piece together information from various physicians that your own doctor may have failed to provide.
In critical periods of hospitalization, ask someone else to monitor your medications and other procedures so that mistakes in medication are avoided, unnecessary procedures eliminated, and necessary procedures utilized. In the hospital every day, this friend may also be the most effective advocate for getting your needs met.
Sooner or later, most cancer patients come to realize that the medical profession as organized today rarely does an adequate job of tracking and coordinating all aspects of treatment and of minimizing errors of omission or commission. The sooner you realize this, the less likely you are to suffer from iatrogenic health problems.
1 Max Lerner, Wrestling with the Angel (New York: Touchstone, 1990), 68.
2 Ibid., 68-9.