Going to the Doctor?

April 6, 2005 (en français)

People diagnosed with a serious condition are often thrown into overload. However, you have the right to participate in all your medical decisions, and it’s important for you to exercise this right. Otherwise, the treatments you get may not reflect your personal goals and priorities. This article will summarize some tips on how to participate in decisions about your care, based on my experiences running a program of decision services for patients at UCSF.

If you haven’t already, please read my article summarizing Top Ten Lessons From People that Have Been There Although based on the experience of women with breast cancer, many of the lessons apply to any medical situation. One of the key points is that no matter how panicked you may feel about a serious diagnosis, you probably have time to engage in “due diligence” about your treatment options. You should not allow yourself to be rushed into having surgery, for example.

Your decisions will be made in the context of visits to medical specialists. You probably will need to see several specialists who can advise you on different ways of treating your condition. I call this the “Visit Cycle,” because you may feel caught in an endless round of appointments. One way of coping with all these medical visits is to separate each one into three phases: before, during, and after. Here are some simple things you can do to maximize what you get out of the visits:

1. BEFORE: PREPARE

Try to create some time ahead of your appointment to write down a list of questions and concerns. You don’t want to get in to your doctor’s office and then blank out on all the issues you were meaning to discuss. Or, if you’re like me, you sometimes walk out of your doctor’s appointment and then think of 3 really important questions you should have asked. Rehearsing for your appointment can prevent this kind of problem. At UCSF, we use a prompt sheet to help patients cover all the bases.

Briefly, the bases you need to cover fit into the acronym SCOPED.

S is for Situation. Think of what questions or concerns you have about your situation. Do you understand your diagnosis? Has a doctor explained your test results?

C is for Choices. What can you do about your situation? What is your current understanding of the available options? What questions or concerns do you have about the options, including experimental therapies and complementary approaches? One set of choices that you should ask about includes further testing to clarify aspects of your situation, or to get a second reading on it since sometimes people are misdiagnosed.

O is for Objectives. What are your goals for treatment? What are your priorities for quantity and quality of life? Don’t assume that the people around you have the same priorities. People differ in their life situation. Just to give an example, some are highly focused on extending life as long as possible, while others are more focused on quality of life.

P is for People. Who are the key people that you would like to involve or exclude in your decision process? Start with your doctors: whom do you need to consult? Are you looking for them to make the decisions with your input? Or are you looking to make the decisions with their input? Or do you want to make the decisions together? It’s important to let your doctors know who else is on your team and how you would like them to be involved. Perhaps you would like the doctor to make sure the friend you brought along is fully briefed because you want them to help you make decisions later. Sometimes a doctor or family member or friend may be taking a more active role than you would like in driving the decisions, and you need to redirect their energies towards supporting you more effectively.

E is for Evaluation. How do your choices affect your objectives? What information is available about how each treatment choice (including no further treatment or vigilant monitoring) affects each objective (like survival, recurrence, quality of life). Ask your doctor if quantitative information is available from the evidence base, and get it in absolute terms. For example, "Studies show that no treatment is associated with 80 out of 100 people surviving more than 10 years, while treatment X is associated with 90 out of 100 people surviving more than 10 years." Be wary of relative numbers such as "Treatment Y is 20% more effective than Treatment Z." Survival and side effect rates are increasingly available and while your experience will be unique and different from anyone else's, they can help you weigh the risks and benefits of treatment.

D is for Decisions. Which choice appears best in helping you what you need and want? What are the next steps to implementing that choice? Or, do you need to collect more information about your Situation, find better Choices, think harder about your Objectives, talk to more People, conduct a more thorough Evaluation? When you are in the early stages of decision-making, don't feel rushed to come to a decision unless it is a medical emergency. Feel free to put off arriving at a final decision while you review your questions about the Situation, Choices, Objectives, People, and Evaluation as described above.

Using the SCOPED checklist, write down your list of questions, and get it to your doctor in advance, so they know what issues you are going to want to cover during your appointment. Email, mail, or fax your questions and ask the office or nursing staff to bring them to your doctor’s attention.

2. DURING: ENGAGE

When you go to see a doctor, especially a medical specialist, you may encounter barriers to getting what you need out of the visit. Specialists often use complex language to describe what’s going on. They are sometimes in a hurry, being overloaded themselves. Don’t be intimidated. Bring a tape recorder. Mention that you would like to audio-record the consultation because repetition helps you learn and you want to be able to review the doctor’s advice later. Also bring someone who can start and stop the tape recorder and who will take good notes for you. Your note-taker or scribe should be someone who is not too emotionally involved in your situation. You want someone who writes clearly, has excellent hearing, and is as familiar as possible with all the medical terminology you will encounter. Your scribe does not need to write down every word that is said (you have a tape recorder running, after all), but they should write down the key points. Ideally your scribe will be someone assertive who can ask the doctor to slow down if they are going too fast. Who makes a good scribe? Ask your friends who they would recommend to bring along. A friend-of-a-friend is likely to be someone who cares about you, but will stay focused on their job (starting the tape recorder and taking notes) without getting distracted. See if you can find a resource center in your area that has a “buddy” program or can match you with a navigator.

2. AFTER: DEBRIEF

Soon after your medical visit, you should gather your support team to help you debrief. You can use the SCOPED framework to review your notes and the tape recorder. What did you learn about the situation, choices, objectives, people, evaluation process, or data? What treatment strategies are emerging as winning candidates to address your goals and priorities? Again, you need to be mindful of what roles you wish to assign people. If someone is crossing a boundary and makes you feel uncomfortable, you can be explicit about their assignment. Use the three V’s to help me assign roles: Visibility, Voice, and Vote. Visibility means you want to keep someone informed of what you are doing and why. Voice means you want their input. Vote means you want them to make the decision with you (it doesn't mean they are literally going to vote, I'm using this term as a metaphor for making the decision). Of course, in some cases you may want your doctor to have the only Vote, while listening to your Voice. But in general, people who act in your behalf may not act in your interest, simply because they are different from you.

When it’s time to make a decision, there are lots of simple processes that may help you clarify your thoughts. Many of them involve making lists or filling out tables or drawing diagrams. Why? Because, as one writer once said, “I write so I can see what I think.” When things are swirling around your head in a cloud of confusion, it’s hard to converge on a strategy. But if you write things down in a structured way, you can see patterns emerge. For example, Benjamin Franklin supposedly used to make a list of pros and cons for any alternative under consideration. Then he would cross out pairs of pros and cons that cancelled each other out, greatly simplifying the comparison. Another option is to make a table with choices in the rows and objectives in the columns. You can then summarize (in the table cells) how each choice advances that objective. You can do that in words, or with check marks, or by assigning points.

After visiting a specialist, though, you may not be ready to make a treatment decision. Chances are you may need to consult another specialist. Go back to step 1 and use the SCOPED framework to make a new list of questions. Of course, these will be better questions. I’m reminded of a quote: “We have not succeeded in answering all your problems. The answers we have found only serve to raise a whole new set of questions. In some ways we feel we are as confused as ever, but we believe we are confused on a higher level, and about more important things.” Although that doesn’t sound much like progress, it is. As you consult your specialists, if you prepare beforehand, engage during, and debrief after each visit, a picture will emerge of what to do and why.

Top Ten Lessons

September 1997 (en français)

Reprinted with permission from www.bcconnections.org

This article is a distillation of the lessons I have learned from hundreds of hours counseling dozens of breast cancer patients at the Community Breast Health Project (CBHP), in Palo Alto, CA. This is the best general advice I can offer anyone embarking on breast cancer decisions. I hope these lessons provide a starting point for more learning. I welcome your comments and suggestions.

[Note: as of 2008, CBHP is now Breast Cancer Connections]

1. Give yourself the time you need to make your decisions...

Most breast cancers take years to grow to the point where they are detectable. A newly diagnosed breast cancer patient can therefore be confident that three or four weeks of decision analysis should not jeopardize the effectiveness of whatever treatment is eventually selected--check with your doctor to be sure. Three or four weeks of decision analysis now may prevent years of suffering later, in cases where decisions are difficult or impossible to reverse and costly in their implementation. Too often, the people who are treating you rush you through decisions to schedule you for immediate appointments because that is convenient and profitable for them. Don't let anyone rush you, including yourself.

2. ...then get emotional support...

As painful as it may be for anyone to admit, the bottom line about breast cancer diagnosis and treatment is that, for the moment, no one knows what causes it, and no one knows how to cure it definitively. This unfortunate state of affairs leads to incredible variation in medical practices as doctors and patients strive to create the most appropriate strategy on a case-by-case basis. The people you consult may disagree on just about every facet of your breast cancer diagnosis and treatment. You almost surely will need support to stay afloat in this quagmire, much less to navigate. Joining a support group may be a good way for you to get the support you need. At a minimum, you need someone who will listen to your reactions, thoughts, and feelings. Recounting your experiences to someone you trust may help you separate the wheat from the chaff in terms of what makes sense to you and what doesn't.

Your personal and professional relationships are unique and will probably change as you deal with your breast cancer. People will react in surprising ways. You may find it worthwhile to get help in dealing with those relationships that are most important to you. Emotional support doesn't only come from support groups; it can come from family, friends, and colleagues. It can also come from groups you interact with as part of your religious practices or social interactions.

3. ...and make sense of the controversies to your satisfaction...

Not running into controversy in breast cancer may be a sign that you need to gather more information! Although the lack of consensus about how to treat breast cancer can be frightening, at least researchers, clinicians and patients are experimenting with new techniques and procedures, and generating "controversy." From their experiences and learning, you can strive to craft a strategy which you believe makes the most sense for you. But be prepared to make commitments: you will have to choose who and what to believe, and who and what to ignore. This may be difficult, for while no one has found a breast cancer treatment that dominates all others on every dimension, people do have favorites, and they tend to advocate them with passion. Each may appear convincing, even as they are contradictory. That's why you need time to analyze everything in a way that's comfortable for you. Aim to be comfortable and clear about the reasoning behind every breast cancer decision you make.

4. ... by managing your decisions like you manage other projects in your life...

Most of our clients at the Community Breast Health Project are accustomed to managing complex projects in their professional and personal lives. Often, the last thing they want to do is undertake responsibility for coordinating their breast cancer diagnosis and treatment decisions, on top of all their other burdens. However, no one else can scrutinize their decisions with the vigilance and self-knowledge that they bring to the task. If they do not act to ensure that their interests are served, someone with different interests will.

In general, unless you seize the decision-making reins, you are at risk of having someone act in your behalf without acting in your interest. Whatever your background or training, bring all your skills to bear on the task of managing your breast cancer "project." Your own established organizational and analytical skills will help you deal with all the controversies you may encounter in a way that's comfortable for you. If you're an inveterate list-maker, make lists. If you like to contemplate your other projects in solitude, make time to do that for this one, too. Approach your breast cancer project with as much confidence and strength as you can muster.

5. ...giving yourself permission to experiment and learn...

Very few decisions are "final" or irreversible. Many clients fret about decisions because they want to be absolutely sure they are doing the right thing before they act. In many cases, they fail to appreciate how much they may learn by trying some therapy. Some are worried that once they begin radiation, chemotherapy, tamoxifen, or hormone therapy (to name a few interruptible treatments) that they will not be allowed to stop. Those who feel supported and confident enough to approach some decisions as reversible experiments are often surprised at which therapies work well for them. However, some damage from side effects may already be done by the time they stop. Patients and doctors need to weigh that risk against the reward of discovering when an effective but frightening therapy is surprisingly tolerable.

6. ...recognizing that your preferences are unique and worthwhile...

While a broad range of information and alternatives are considered "acceptable" by people who deal with breast cancer patients, some of your caregivers may have difficulty accepting your preferences. Some will make presumptions about your preferences concerning your quality of life, your body image, your state of mind, and other things which they think they know better than you. As a decision analyst who has spent hundreds of hours helping people clarify their decisions, I have learned to respect and appreciate the infinite diversity of human preference. If you know what you like, be wary of people treating you as if you like--or should like--something else.

You may not always know what you like, and in that case, consulting yourself, or even others, may make sense. The experience of breast cancer often leads people to change the way they lead their lives because they realize what is really important to them. In my experiences helping breast cancer patients struggle with their decisions, the greatest source of frustration to me has been how other participants make presumptions about what the patient "must" want.

7. ...remaining vigilant about ignorance and backwardness even among people who appear professional and qualified...

You may tend to be more or less critical about people depending on their demeanor, attire, titles, and other superficial indicators. In a high-stakes situation such as breast cancer, you may want to rely on more critical methods for evaluating whether someone is an appropriate partner for you as you make your decisions. My approach, developed at Stanford University, intervenes with doctors and patients to help them orient their interaction as a teaching and learning partnership. We have been successful in helping CBHP clients prepare for upcoming consultations with surgeons, oncologists, and providers of complementary therapies.

In this limited space, the best advice I can give is that you may want to pay attention to whether the experts you consult are oriented towards teaching and learning. Such people will distinguish themselves by listening to and questioning you until they can summarize what is on your mind, and they will check with you that they have understood you before they make further observations or recommendations.

8. ...delegating tasks to people you trust...

Apart from the emotional support that you may find sustaining--and regardless of what your usual management style involves--you may want to delegate some of the overwhelming amount of work that your breast cancer project generates. Breast cancer patients often can find friends to whom they can delegate logistical tasks necessitated by their everyday lives, in order to free up time and energy for the breast cancer project. It may be possible to delegate other tasks, too, such as library or on-line research.

9. ...keeping records of your case...

There are at least two reasons to maintain, in your possession, a complete record of your breast cancer project. First, for your own education about your case, you will want to review it when it's convenient for you. Second, you will want all the material at your fingertips so that you can give copies of it to experts whom you consult for second opinions. This is something you should do for any report which leads people to make recommendations, such as the mammogram or pathology report.

Gathering and maintaining a complete record of your project may be one of those tasks that you can get your friends or volunteers at a resource center to help you accomplish. In addition, the best investment I think anyone facing breast cancer decisions can make is a portable tape recorder to audiotape the many consultations involving different specialists who try to devise treatments customized to your case. Bring someone along to your meetings to deal with the tape recorder if it's distracting or troublesome for you to do it yourself.

With audiotapes, and notes (ask for copies of notes made by any other participants in a meeting), you begin to have the material you need to educate yourself about your case. In addition, you may want to obtain all the records maintained by the organizations involved in your care. Many of these records may be initially indecipherable to you, but someone, somewhere will know how to translate them. That sounds like a task you can delegate, too.

10. ...and last, but not least, maintaining your sense of humor.

Your breast cancer project will be serious work, but there is a difference between serious work and working seriously. And remember to take breaks. Now is a time to put your needs first, and take care of yourself.

Questions for your doctor?

Revised July 25, 2008 (en français)

This prompt sheet is intended to stimulate questions that you should write down and ask your doctor or other health care provider. It is based on the SCOPED model of decision making. If you wish to use any of this material as part of any organizational offering, please use the contact sheet to request permission.

Questions for Your Doctor? (SCOPED prompt sheet for patients)

Jeff Belkora, PhD – Director of Decision Services, UCSF Breast Care Center – July 25, 2008

Situation (Key facts and knowledge gaps) Questions about key facts? Diagnosis? Test reports? Pathology report? Anything unusual about your situation for your doctor to know?

Choices (Available actions) Tests? Treatment options? Active monitoring (no further treatment)? Newest treatments? Most proven treatments? Most aggressive treatments? Least aggressive? Middle ground treatments? Second opinions? Clinical trials? Complementary therapies? Remedies for side effects? What to stop doing? What to start? Decisions to make now? Decisions to make later? Past decisions to revisit?

Objectives (Goals and concerns) Goals for doctor’s appointment? Goals for treatment? Preferences about length and quality of life? Regarding quality of life: what to continue/protect? (e.g. relationships, work, hobbies, daily activities, body image, sexuality, child-rearing, etc.)? What to avoid? Preferences about timing, frequency, duration, intensity, location, costs of treatment? Concerns about interactions with other treatments or medical conditions? Hopes? Fears? Unspoken thoughts or feelings? Prefer survival/recurrence/complication rates to be explained in numbers (e.g. 60% ten-year survival rate) or words (e.g. more likely than not to survive)?

People (Roles and responsibilities) Decision-making: Whom do you want to have a voice in influencing your decisions (i.e., seek their input)? A vote (involve them in arriving at a final decision)? Visibility (keep them informed)? Specific preference for your doctor’s involvement (e.g. give information, make a recommendation, make decision for you?) Roles and responsibilities of other people (e.g. other doctors, people accompanying you to appointments)? Who else do you need to talk to? Anyone to exclude? Questions about where else to go for advice or information or support?

Evaluation (Impact of choices on objectives) Questions about how specific choices might affect specific objectives? Baseline prognosis (prognosis with no further treatment)? How choices will affect survival, recurrence, complications, side effects (e.g. rates for patients like you?) How choices will affect longer-term quality of life? Best-case scenario, worst case, most likely (e.g. in terms of survival, quality of life) for each choice?

Decisions (Best choice and next steps.) Which choice best accomplishes the objectives? Who needs to do what, when, where, why, how? What resources can help overcome any barriers to next steps? If undecided/unready: Timeline/deadline for arriving at a decision? Priority relative to other commitments? Resources for addressing information gaps?