Being one’s own patient advocate means taking responsibility for one’s own health decisions. This is a quantum change from the way things were not very long ago. My parents were very silent in their meetings with doctors. They trusted the doctor to do what was best for them, even though the doctor could only surmise, based on his subjective point of view and his experience with other patients, what it was my parents’ wanted. This is sometimes called the paternalistic model
of doctor/patient relationships.
The new model places more of the responsibility with the patient. Some will not want to take that on, and that’s OK too. Sometimes it can’t be salvaged – the personalities and goals are just too different. Patients drop doctors, and vice versa.
The new model of doctor/patient relationships calls for shared decision-making
. The doctor and patient work out the treatment plan collaboratively. This puts a greater onus on the patient, and relieves the doctor of some of his traditional responsibilities. Most doctors don’t really want to play God.
The patient must make explicit to the doctor what his priorities are. He has to think about what is really important to him, and which oncological risks and risk of adverse events from treatments he is willing to take. Are you willing to trade some quantity
of life for quality
of life? Are you willing to forgo ADT with radiation even though it may work better with it in the hope of diminished sexual side effects? Are you willing to try chemo earlier rather than later in disease progression to get a longer survival benefit, but knowing it may eventually fail? Do you want to put off taking ADT to have better quality of life, knowing the disease may progress unchecked? How much pain are you willing to tolerate without feeling drugged all the time? These are hard choices.
Also, let the doctor know if you are willing to enter clinical trials or be treated with an experimental protocol. Some patients want the tried-and-true, and most doctors will only offer the standard-of-care unless the patient speaks up. You have to decide for yourself if the potential benefit of an experimental protocol outweighs the risk that it might not work as well.
It helps to become as informed as you can in preparation for the meeting with your doctor. Try to meet the doctor on his own terms and with his own terms. On his own terms
means that the information you accumulate is of the same quality as his information – studies published in recognized peer-reviewed publications, rather than anecdotes from a co-worker or random Internet sites. With his own terms
means trying to learn the lingo as best as you can. Know the meaning of "Gleason score", "stage" and "PSA," for example. At a meeting last year, a patient asked a doctor, “For how long will I need ADT if I have radiation?” The doctor explained that it depended on his risk level, which was a reasonable answer. However, I knew what the patient really meant (I talked to him earlier) and asked “He means, for how long must he be on ADT neo-adjuvantly
?” By knowing the terminology, I got the answer the patient wanted.
The doctor has responsibilities under this model too. He is responsible for administering treatments that maximize oncological control while minimizing side effects of treatment within the limits dictated by the patient. The doctor becomes the key information resource for the patient. He should provide a realistic assessment of the risks and benefits attached to each treatment option. Full disclosure of all possible side effects should be discussed and provided in writing. He must listen to the patient and acknowledge the factors that are most important to him.
Because there is so much more shared information under this new model, Patient Decision Aids (PDAs) have been developed. These are in writing or online booklets that take the patient through all the risks and benefits and ask him to make decisions about what is important. The doctor and the patient then discuss the PDA as an aid to negotiating a mutually satisfactory treatment plan. But a PDA is not a substitute for a face-to-face discussion. When used instead of
rather than in addition to
, the results can be worse than if no PDAs were used (see this link
Yes, some doctors are very full of themselves, and don’t think the patient can possibly have anything useful to say. In my experience, that is a rarity. Doctors are, for the most part, exceedingly smart and intellectually curious people. To the best of their ability, they want to do what’s best for the patient. It’s all about respect. Respect his time, his experience and his knowledge, and he is likely to return the favor. If you approach him with that attitude, ego problems are likely to disappear.
Of course, it can never hurt to let him know how much you respect him. If you have something genuinely complimentary to say, verbalize it. Let him know how much you appreciate his time and effort on your behalf. If you are gracious to him, he may be more gracious to you.
I always assume he knows at least whatever information I know. He reads full-text peer-reviewed journal articles and attends conferences. However, he may have a full patient load and may not have read about some recent finding or other. (See Research data
Ask questions, rather than making demands. “What is your opinion about 18 months of ADT vs 3 years?” is a better approach than “I won’t take ADT for more than 18 months!”
I hate to sound sexist, but if you can, bring your wife, or a female friend or relative along (or at least take a lesson from their communication style). They have spent a lifetime dealing with the male ego, and are just better at it. Unlike men, who are often more competitive by nature, women are more naturally collaborative. That is a much more productive interaction for the doctor/patient relationship.
Sometimes you will come across a research study online that seems perfectly relevant to your case. How should you handle it with your doctor?
The way I do it is, first of all, respectfully. I start by acknowledging that he probably has seen it. My approach is collaborative and open, rather than confrontational and closed-minded. I try to share it, preferably via email, before my visit, if one is coming up. This gives him a chance to look at it and respond to it in a more considered way. I am also careful about sources. I would never send some “miracle cure” from a random Internet site. It is always based on peer-reviewed medical evidence. I am also open to refutation: I may not have understood why that case does not apply to my case; I may not know that there are more recent findings, possibly from a higher level of evidence; or, I may have misunderstood the findings or conclusions.
During the visit
You get the most out of the doctor/patient relationship if you come to the visit prepared.
• Bring your medical records with you (e.g., PSA results over time, biopsy, prostate size, staging, pathology report, medication history). I keep all my records in a computer file for easy access and retrieval.
• Bring a written list of your questions. If you try to remember – you won’t. It’s just too stressful, and there’s too much time pressure. I like to print them out and leave space to write down the doctor’s answers.
• Take notes. It’s just too easy to miss something when you’re trying to absorb so much all at once, often with unfamiliar terminology. It’s also a good idea to record the conversation, with the doctor’s permission, and to transcribe it to a computer file later. That forces you to go over it and may help you recognize that there was something that requires clarification. However, it is tedious to listen to a long meeting, and in my experience, most patients do not review the recording. Notes are better.
• Bring someone with you. Two sets of ears are better than one, as are two sets of notes. Afterward, stop for a coffee and de-brief. Compare your notes. Did you both hear the same thing?
• Write a summary of the meeting. I email it to myself so I have a permanent record. It’s not a bad idea to email your doctor a brief thank you note, and highlight what was discussed, agreed upon or left open, and what the next steps will be.
Preparation for a meeting:
- ....give the doctor a heads-up that these (whatever they are) are the topics you want to address at the next meeting- email in advance of the meeting - the more notice the better.
- ... email the links to a peer-reviewed journal of any topics you want to discuss
- ...write down your questions, leaving space to write down notes of his answers (or, let whomever you bring along write them down) - debrief with that person afterward to get concurrence that you both heard the same thing.
- ...let the doctor know if you are willing to risk a clinical trial.
- ...pump up the doctor's ego - be self-effacing (note: women are usually much better at this than men are)
- ... surprise the doctor with a question - the reaction to a surprise is always the fallback position (the Standard of Care)
- ... pull out an article during the meeting- there is no time for him to consider it.
- ... tell him about something you heard from a friend or on the Internet --that is just inviting him to dismiss it.
- ...ask him things he can't know - e.g., which choice is better? will it work? how long do I have?
- ... let your ego get in the way - it isn't important to be "right" - it's important to find the best treatment for you, even if you were mistaken about it going into the meeting.
In other words, manage the meeting the same way you would a business meeting.
We all want to eliminate unnecessary visits, but keep the essential ones. You may have to visit the doctor for treatments, certain tests, to update the diagnosis, to change the treatment plan, or to discuss side effects and remedies. But it may not be necessary to have a visit just to check in or discuss every lab test. There should be an agreed-upon purpose or goal for each visit.
I think it’s usually a good idea for the doctor to call/fax an Rx for lab tests ahead of your visit with him. Your visit becomes more productive when you can sit down together to discuss the lab test results and any actions to be taken because of them.
Most communications with your doctor can probably be handled with a quick email. Most medical centers are moving towards email communications and away from phone communications. I hope that waiting for the doctor’s phone calls, and playing “phone tag” with him will soon be a relic of the past. Also, it avoids playing “telephone” with a string of intermediaries who put their own spin on the message. If you keep it brief and to the point, email messages can be a lot more efficient and effective. It also facilitates sending copies of studies you may want his comments on.
When faced with the primary therapy decision, there may be a large number of doctors you meet with - one or two urosurgeons, an IMRT specialist, an SBRT specialist, one or two brachytherapy specialists, a specialist in proton therapy, a specialist in ablation therapy, an active surveillance specialist, as well as experts in special diagnostic tests. It is tempting to want one doctor to be a "quarterback" and some doctors advertise themselves as doing that. I recommend that you resist that urge - never give up your power, and rely only on doctors with specific expertise. There is no doctor who knows anything close to what experienced practitioners know (which will not prevent them from expressing opinions). Get your information directly from the experts, and assess it yourself. It can be a formidable task, so take your time. There is no rush - even men with high-risk prostate cancer did no worse if they waited 3 months between diagnosis and treatment (see this link
Some hospitals offer a team approach - sort of like one-stop shopping. All their best experts give you their opinions. Ideally, you would want to pick your own best doctors, but if you belong to an HMO, that may not be possible. If you have to have a team approach, it is best if you meet with each team member separately. Doctors are often reluctant to contradict or disagree with one another in the same room.
Sometimes it is time to move on from one kind of specialist to another. After radiation therapy, you may want to see a urologist or a proctologist/gastroenterologist to manage symptoms. Similarly, after prostatectomy, it can be useful to see a specialist in sexual medicine. If PSA increases steadily post-prostatectomy, patients should see a radiation oncologist. If all salvage therapies have failed, that is the time to see a medical oncologist.
Managing your records
Good recordkeeping is essential to good communication with your doctor. Communications are so much easier when you don’t have to guess what some report said, but can look at the actual report instead and agree on the facts.
Keep copies of all lab tests and reports. Computerize the results if you can for easier access and organization. If it’s too much trouble to enter lab test results on spreadsheets, at least scan them into your computer. To that end, I ask my doctor’s office to email me copies of all reports. With the new hospital and lab report email systems, it’s already online for me. I like to send myself copies anyway, in case I someday lose access to those systems.
I like to keep a log of all my doctor visits – just the date, the doctor, and some brief notes about what was discussed. It is handy for billing, as well as tracking the history of the disease.
There’s one chart that I find invaluable, and it's one that doctors love. That’s a chart of my PSA over time, on which I also note key events like biopsies and therapies.
It is equally important that the doctor evaluates and tracks the patient’s subjective symptoms in addition to his objective symptoms. Another series of records I like to keep is my qualitative assessment of my condition over time.
A popular instrument for tracking quality of life with prostate cancer is called the Expanded Prostate Index Composite (EPIC)
. It’s a validated questionnaire used to obtain the patient’s subjective assessment of his quality of life based on urinary, rectal and sexual dimensions. Many doctors will ask you to fill it out before treatment begins to get a baseline measure. Then you fill it out periodically to track your progress on those dimensions. My RO uses it as a springboard for discussion at each visit. You can download a copy here
and take it, score it (scoring instructions here)
, and track it over time, even if your doctor doesn’t. It might lead you to want to discuss some aspect of it with him. Another version is called the UCLA Prostate Cancer Index (UCLA-PCI)
. Other tests sometimes used are the International Prostate Symptom Score (IPSS)
which only tracks urinary symptoms. An instrument for measuring sexual function is the International Index of Erectile Function (IIEF)
or the shortened version called the Sexual Health Inventory for Men (SHIM)
For cancer patients, the performance status is often tracked using the Karnofsky Performance Status Scale
or the ECOG Performance Status
. There is a questionnaire, often used in Europe, for tracking the patient’s quality of life with cancer called EORTC QLQ-C30
Your doctor will probably also fill out a co-morbidity evaluation. The Charleson Co-Morbidity Index
or the Adult Co-Morbidity Evaluation- 27 (ACE-27).