notes | brachytherapy.com | prostate | breast | lung | other cancers | tomotherapy | team | ctca
notes | brachytherapy.com | prostate | breast | lung |
other cancers | tomotherapy | team | ctca
The term Patient Empowerment Medicine (PEM) was coined at Cancer Treatment Centers of America, to describe their working philosophy. It is a set of beliefs instilled in the doctors and organization as a whole. A full description has never been written, but I will try to describe what I have experienced working there and what I believe the ideal can be. PEM is not a mystery; instead it is the logical conclusion to “what is the best relationship that I can have with my hospital and my doctors?” Despite the fact that so few hospitals embrace this philosophy, its components will probably make obvious sense to you. Patient Empowerment Medicine at its heart means having a partnership between you and your doctor and hospital. It defies the old rules of the patient as the passive recipient of the doctor’s unquestionable knowledge and puts the patient front and center in the decision process.
The traditional medical model can be summarized by a sentence that I frequently see at the conclusion of a doctor’s consultation note. It is, “Thank you for allowing me to see your patient.” Usually, a consultation note is sent to the doctor who referred the patient, and the last line is placed there to thank him for the referral. However, there are a couple things wrong with this phrase. First, it is common practice that patients are usually referred from one doctor to another. They are not encouraged to go out and self-refer themselves to doctors they choose. In fact, some specialists are so uncertain with the model of self-referral, that they may refuse to see patients who refer themselves, or they will instinctively still add that last sentence to the end of their consultation note even if a patient refers himself. Look for that line at the end of your doctor’s consultation note, if you can get a copy. It is very rare for a doctor to spontaneously send out a copy of his report to the patient. The consult report is not intended to go to you, the very person who is seeing the doctor for his recommendations. You usually need to go to the medical records department and specifically request copies of your reports, and may feel guilty doing so, as though you are doing something underhanded or questioning the doctor’s authority. I would like to see consultation notes that instead thank the patient for coming for a visit, are written in more understandable language, and are automatically sent to the patient.
The second problem with the phrase is the concept of ownership. “Your patient” means that you belong to the referring doctor. He is “allowing” this new doctor to see you in consultation. You are an object, being passed around in the medical establishment, much like the silver ball in a pinball machine. The ball has no control over where it goes next as it gets passed, ricocheted, and gets trapped in potholes. Eventually it may be game over. All the tests, treatments, decisions, and outcomes are being controlled and allowed to occur by your doctor. In PEM this concept is flipped on its head. Instead of being a passive object, the patient becomes the active controller. It is as if the silver ball suddenly grew feet and a brain and could now not only control its own path within the pinball machine, but also would actually demand that it be released from the machine. PEM is patient oriented medicine. The patient controls which doctors he sees, what knowledge he takes in, and which treatments he chooses.
PEM is not simply a state of mind that patients can adopt however. It needs to be a partnership. There must be a willing patient and a willing doctor and medical establishment. A patient who does not want to play an active role, but wants to completely trust his doctors to do what they think is best for him does not need PEM. Also, the most eager patient can get nowhere if he is trapped by an inflexible primary doctor in an inflexible HMO. Both a motivated patient and a supportive doctor need to be present. You may ask, what happens if you are uncomfortable making your own decisions, or don’t know enough information to be able to decide intelligently. A good PEM doctor should also be able to change gears, and step in and help a patient make decisions. This can be a difficult process to adapt to each patients needs, and probably is the hallmark of a great patient empowerment doctor. I personally find it very difficult when a patient says to me “just tell me what the best treatment is, doc, and I’ll do everything you recommend.” Other physicians handle that naturally, but bristle at the patient who arrives carrying hundreds of pages of Internet downloads, a list of detailed questions, and an evolving plan in their mind for what tests and treatments they want.
The other aspect of partnership is that just as a patient has powers or rights in this model, so do the doctors. A patient cannot demand a treatment from a doctor. A PEM doctor works with a patient as much as he can to facilitate education, testing, referrals, and treatment. Ultimately though, he is not obliged to perform a treatment he doesn’t believe in, or order a test that he feels is dangerous or worthless. He does respect the patients desire to have these, understands that there is more than one right answer, and works out a solution if possible. The doctor is ultimately the director of care, the expert, who can be a source of knowledge and answers for the patient, facilitate and decipher tests, and finally offer treatment or help organize the services of someone who can. The doctor does not own the patient. Neither is he the humble servant, rather it is a partnership.
You greatest ally in PEM may not even be a person, but instead can be knowledge. If a little knowledge is a dangerous thing, unfortunately a lot of knowledge can appear to make your treatment decisions even more complex. This is why many patients want to hand over all the decisions to their doctors – they feel that they cannot possibly learn enough to make the best choices. People with cancer desperately want to choose the treatment that will give them the highest chance of success without sacrificing their quality of life. For conditions like prostate cancer it is all the more relevant. Men with prostate cancer frequently have no symptoms at all to start with, but they risk impotence, incontinence and bowel damage from any of the dozen or so treatment options available. There can be a very good chance of curing the cancer or living for many years after the treatment, which means that men may have to risk life-long consequences if they choose the wrong option. Medical specialists will tend to recommend their own treatment they specialize in, so it is frequently up to the patient to learn about all the options through reading, research, and second opinions.
With the knowledge and ability to choose between different choices comes dread of making the wrong choice. Kierkegaard, a philosopher in the 1800’s, described how dread occurs when there is freedom to choose. I have seen patients torn apart by angst that they will not make the right decision, worried that they will risk dying or spending the rest of their life without urine control or the ability to have sex. For women with breast cancer, the questions can be whether it is necessary to remove the entire breast and the lymph nodes, and whether the benefits of chemotherapy outweighs its risks. Friends, family, cancer survivors, and supportive medical professionals can all be helpful in ultimately deciding on a treatment. Usually after painful research there comes a point, an epiphany, where one decision feels the best to you, and everything is clear.
During the whole process of researching and deciding you may feel like life would be simpler if the decisions were taken out of your hands, and you were merely told what to do. Ultimately though, when you’ve explored all your choices and one thing stands out, you will be happier knowing that you’ve chosen the right treatment for you. If you have a good doctor he should respect your decision no matter how much he perceives it as being under-treatment, over-treatment, experimental, or alternative. You may have a very different set of beliefs than your doctors (and family members).
The possibility of certain side effects may weigh more heavily on your mind than it does on others. Doctors look at cure rates and side effects with a different set of priorities than you do. A doctor may regard a 60% chance of becoming impotent as being acceptable, but you may look at it as a 60% chance that your life will not be worth living afterwards. A 5% chance of cure may seem very good to your doctor but very bad to you, or vice versa. Only you can have your own feeling for how much a certain chance weighs on you. It is the sum of these feelings that ultimately leads to clarity and a decision.
PEM is ultimately helpful by giving you more power in the treatment of your cancer and by helping ensure that the tests and treatments you choose will fit in with your beliefs. If you have a doctor who does not agree with your philosophy, you can either choose to switch doctors, or else you may be able to use him more as a technical advisor or treatment delivery specialist. You can leave the overall treatment philosophy up to yourself and hopefully to a supportive health care professional, which may be an oncologist, surgeon, internist, or even an alternative care practitioner. It can be upsetting to a doctor for you to switch your care to another or to go against his treatment recommendations, but with PEM the relationship you have with your doctor is more critical because it is a two-way relationship instead of the one-way paternalistic style. Switching doctors may not be a reflection of his education or technical ability; it may be because you need a doctor that you can have a more true partnership with.
There is a brave new world out there. If you are more comfortable with the old model of placing your trust and care totally with your doctor, this is fine. If on the other hand you want to play an active role and ultimately make the decisions yourself, then you will find that the medical world is gradually waking up to the fact that there are more and more people just like you. Although Patient Empowerment Medicine is not yet a widely recognized term, its principles exist just like gravity exists, and doctors and patients are gradually adapting to these new forces and powers that patients are realizing they have.
Patient Story Mr. KE first saw me seven years ago. He was quite young, in his fifties, and he and his wife lived a very enjoyable life. One day after an abnormal PSA blood test and a biopsy he was suddenly a prostate cancer patient. His PSA was 21, he had a large tumor on his prostate, and the Gleason score was 9 out of 10 indicating it was a very aggressive cancer. He saw the World’s Best Urologist, who advised him that there was nothing that could be done, and that he should go home and enjoy his last couple years. Instead, he researched what was out there, and ended up self-referring himself across the country to my clinic during what was only my fourth month of practice. It was true his cancer was aggressive, but I felt that there was a chance, maybe 30%, that we could cure his cancer. At minimum, hopefully we could slow it down. For a young man, a 30% chance of beating cancer is a much better odd than the chances of winning a million dollars in the lottery. He was very eager to do whatever we recommended, and I placed him on quadruple therapy. This consisted of hormone therapy for one year, radiation therapy to the entire pelvis to treat the lymph nodes, brachytherapy to give a high dose of radiation to the prostate, and recommendations for diet, supplements, and lifestyle changes to improve his overall health. He did very well afterwards, and we were both very joyful and hopeful that his cancer was cured. Unfortunately, during the fifth year the PSA began to rise rapidly and he was diagnosed with a recurrent, incurable cancer. Since that time he has been on hormonal therapy and we have kept his PSA and cancer under control. He is following his natural therapy regimen closely and I do believe this is reducing his side effects and making the cancer grow less aggressively. We know that at some point this treatment will probably stop working for him, but hopefully that won’t be for a long time. At that time, we will try a different treatment program. There are many other treatments out there that I have tried or that other doctors have tried, and we will keep trying and being hopeful. Although we haven’t cured Mr. KE’s cancer, we have worked within his wishes and have never given up. |
Notes are written by Dr. Doug Kelly, unless otherwise stated. These reflect my own opinions and not necessarily those of CTCA or my colleagues.
