"As a Patient: I Am My Own Doctor. Trust Me"
Could there be the possibility that medicine and the medical
system including the schools that teach medicine and the organizations and
governmental agencies which set standards all have become paternalistic toward
the patient as a person and toward the patient's diagnostic workup and
treatments? Could it also be that the
patient is currently struggling to become more autonomous in terms of their
individual various self interests but also
self-diagnosis and self-therapy but is being hindered by regulations and laws
or established standards limiting these opportunities? Shouldn't the patient
have more clout in setting standards which are more in the patient's own best
interest, but from their own point of view and not that of some politician or
regulator? These are questions that
could be considered in view of the current public discussion and debate about
the role of governments in medical care and payment for medical services. Further. current discussions, for example,
deal with the restrictions to ready availability to those in need of
anti-cancer drugs , restrictions of drug availability by denying "over
the counter"purchase without a physician's prescription or how life-saving
organ transplants are allocated. In addition, there are a number of states in
the United States which set regulations
potentially limiting the activities of practitioners of alternative
medical treatments and thus limiting access by the patient.
One could argue that in these days of accessibility of
medical information on the internet and other forums, both in terms of
symptoms, diagnosis and approaches to therapy, that individual patients, for a
host of medical conditions, reasonably could and should, saving time and money,
be able to diagnose themselves (having diagnostic testing available on their
request) and be able to treat themselves and not depend on obtaining a
physician's office visit, wait and then ask the doctor for a prescription. That means that all medication could be
obtained from a pharmacy without a physician's
prescription. That argument could also
include that the patient should have the freedom to access any and all alternative medicine practitioners with the use of their
full armamentarium of offered
therapeutic tools, unhindered by bureaucratic laws or regulations. One could argue: let the patient be fully
responsible for themselves as they should be and be fully able to use the
services of a licensed physician or surgeon as part of the patient's own selection from a host of other
opportunities for diagnosis and treatment. One could argue that there are
limits to the excuse of protecting the patient from themselves or from those
who they consult. And in the final
analysis, it should be the patient who sets the course for their own diagnosis
and treatment and for that course all patients should have freedom to obtain
and use whatever tools are available.
Would you make the, perhaps Libertarian argument I presented above or do you think
that the status with regard to a patient's medical care is just fine now with
adequate autonomy presented to the patient?
Let me read your opinion.
..Maurice.
Graphic: From The U.K. Guardian via Google Images
posted by Maurice Bernstein, M.D. @ 7:55:00 AM
13 comments
13 Comments:
In one sense, don't some patients have that option already -- at least those who can afford health care.
-- One option is to just not go to the doctor.
-- Or, not accept the doctor's opinion and treatment plan.
-- Or, just do the research and create one's own treatment from what's available without prescription.
Now, I'm assuming here that the patient has the option to get the treatment if he/she chooses. But that requires money and/or insurance. In fact, if someone has enough money, or or she can just hire their own doctor who then becomes an employee of the patient and does what the patient wants, i.e. Michael Jackson (and other celebrities) getting whatever drugs he wants.
Interesting comments. I feel that the answer is somewhere in the middle.
Today's arrangement is that doctors tell patients only what they feel they need to know.
There are few that are willing (or have the time) to say, "You have xyz disease. There are five options. They are... I recommend option 3, here's why. Patient, how do you feel about it?"
What if you've been suffering from multiple ailments but nobody can seem to put the pieces together. Do you keep looking or let the doctors treat each piece of you, never feeling better.
Recently, more than one doctor wanted me to go through an extensive exploratory surgery that had an eight week recovery. They want to know what's wrong and the prognosis.
I asked, how would you treat what ails me differently if you do this invasive procedure. The answer from multiple sources is, "We really wouldn't treat it any differently, we're already doing everything we can'.
As the patient, I made the decision not to go through with the procedure. I don't care about the prognosis and...how many times are these things wrong anyway. Maybe it would matter to me more if I had young children. But who really wants to know?
So...as of now they don't know what's wrong. There are good days and bad but the important thing is that with medical support, I am making the decisions that matter to me.
If they said it would make a major treatment difference, I'd have to think about this again. But for right now I told both doctors NO!
We've had multiple discussions but no two doctors share the same mindset about everything, nor do patients.
It's a give and take as it should be.
belinda
Doug and Belinda, the point within the argument I presented was NOT about informed consent or informed dissent which I think is an ethically and legally accepted provision of autonomy to all patients with capacity to make their own medical decisions.
The argument goes beyond consent. It deals with powers of patients to guide their own diagnosis and their own treatment or management independently of decisions of medical professionals or medical standards or regulations or laws applying to access to drugs, access to procedures or access to alternate medical care. The argument infers that patients themselves should have the option to be responsible for their own diagnosis and treatment and responsible for the personal risks which may be involved through access to drugs without required prescription, to diagnostic procedures or tests initiated by the patient or to any form of alternate medical providers or their treatments. For example, though smoking and alcohol are potential killer "drugs", they do not require formal authorization to obtain except limited by age. Why then should other potentially toxic or addicting drugs but useful or indicated for the patient's medical condition require a physician's prescription instead of being available "over the counter"? Why should alternate medicine practitioners and their treatments receive special state scrutiny? One could argue that medical paternalism still excessively trumps patient autonomy in the 21st century. My question is whether my visitors believe that argument. ..Maurice.
Great conversation. The first thing that popped out to me, was how competent are patients to figure things out? Yes, we are all responsible for choices we make both in an out of the medical arena.
If a patient is intelligent, and has the ability to analyze what the medical professionals say, get their second opinions, of course they are competent to manage their own care. That also means seeking out the proper medical professionals.
We smoke, drink, eat bad things, get fat. Does the mindset of these people warrant them taking things over completely?
Then, we have the hangups. Everybody has them in different areas that could influence a course of treatment, sometimes the patient has no knowledge of some of these things.
My answer to your question is a big fat NO. Patients should not be the drivers of their own healthcare. It's okay to advocate, question, get opinions but we lay people are not equipped to manage our own care on our own...even if we are intelligent.
If you think healthcare costs are high now, how do you think patients would mismanage what tests to take, what medications, etc and the waste would be incredible. There needs to be a barometer for all of this and that's what the medical community does for me.
belinda
Belinda, you write "Patients should not be the drivers of their own healthcare." But maybe that statement reflects a potential problem in our healthcare system. If patients are not the "drivers", do you think that just being "passengers" sitting in the back seat is sufficient? Maybe this attitude or frank behavior is what is hurting the healthcare system and healthcare for the individual.
For example, patients (and we all have had them) delaying seeking medical attention for symptoms or as we have seen presented on our Patient Modesty threads, rejecting essential diagnostic procedures or surgical treatment because of physical modesty concerns.
While, of course, all humans who are healthcare providers or members of the healthcare system are potential patients, what I think is necessary is that people who are not working in that system, join as various community committee members in those systems and help direct and help "drive" the systems to better functioning for all patients. (For example in the hospital ethics committee in which I participate of the 20 or so members, we have currently 3 who are community members.) This is one activity that may provide patients an opportunity to enhance their personal medical autonomy. So, even if the patient is not actually driving, we should encourage patients to at least "sit in the front seat next to the driver"! ..Maurice.
Exactly. That's where I think the best place is to sit.
For the purposes of this conversation, I'm in a place where I'm suffering with more than one ailment. Most doctors feel that these problems are independent of each other but several have found that there seems to be a connection and a rare disease at play.
Eventually after arguing, they found out that I was right. This happens all the time. From that sense, listen to your body, take in the information, and keep driving it forward until you're in the right place. Where is that place? It's where there's recognition or acknowledgement that there is another piece to the puzzle. A doctor who shares your mindset is your best ally.
Without forward thinking, you will never find out what's wrong. So, whether is starts with the medical people or the patient, it has to start. Who knows their body better than the patient? How many times have doctors told patients "it all in your head".
What I've found most interesting about my own experience is that specialists only want to look at their piece of the puzzle.
So I suppose some of this might be a matter of wording. I'm not going to sit there without someone saying to me something like, '"you have four things going on that shouldn't be. The cytology says one thing but the symptoms and test results say something else. I need to look further or send you to someone who is more familiar with this rare issue that you seem to have."
belinda
I feel it varies by every condition. I feel doctors can be very helpful in diagnosing patients. At the same time, many patients have helped doctors to diagnose what is wrong with them. I think it is important for patients to do their own research.
Sometimes, patients have to visit multiple doctors because they have not been able to get a diagnosis. Doctors could not figure out what was wrong with my grandfather for months. It turned out he had seizures and I figured this out before doctors did. I did some research and I found out that sleep apnea can cause seizures.
If a doctor gave me a diagnosis, I certainly would do research to back up details with the diagnosis. If there were any doubts, I would go back to the doctor with my research. I know many doctors hate it when patients do their own research, but I do not care. No doctor knows everything. I have learned so much through researching medical issues over the years. I really appreciate Dr. Sherman disputing pap smears. He never said that pap smears were unnecessary. All women have different risk factors and doctors should not have the same guidelines for all patients.
I feel patients should be in control of their health as much as possible. There are many good doctors who have saved people’s lives or helped to fix injuries that had turned into disabilities so I do not think patients.
Dr. Bernstein: How do you feel about patients who have done some research about what might be wrong with them before they come to see you? Are you okay with your patients sharing what they think might be wrong with them?
Misty
Misty, personally I appreciate that a patient has carried out some research about their symptoms before coming for the visit. The patient performing research demonstrates to the doctor a special interest in their illness which may be of value indicating behavior later on in terms of compliance with regard to workup and therapy. However, I would be interested in the what resources were used. For example, obtaining diagnosis information from a TV pharmaceutical ad alone would, to me, be a rather weak research.
Of course, I am "okay" with my patients "sharing what they think might be wrong with them". This provides a lead to obtaining additional pertinent symptoms and history and allow the doctor to point out and discuss any inconsistencies. There is nothing wrong with the patient to be a team member with the physician in developing a differential diagnosis of the symptoms. This is much better and much more effective than a "silent patient" simply awaiting an diagnosis from the doctor. ..Maurice.
Dr. Bernstein,
It’s encouraging to hear that you welcome patients doing research about what might be wrong with them. I agree with you that it is helpful for you to find out what resources they used. TV pharmaceutical ads can be very misleading. Some medications such as Actos even if they are approved by FDA have proven to be dangerous. I cannot help, but wonder if Actos played a role in causing my grandma’s heart attack. Her family doctor prescribed Actos for diabetes.
I was disappointed in how my maternal grandmother’s family doctor misdiagnosed her with esophageal problem when she was having a heart attack. Fortunately, my grandma went to the ER because her chest pain would not go away and that’s when she was diagnosed with a heart attack. She had to be transported to another hospital where she had heart bypass surgery. She did very well. The cardiologist or heart surgeon told my grandma she should stop taking hormones because they could cause heart attack. I had no idea that hormones could cause heart attack before. I also learned that hysterectomy patients are at a higher risk for heart attack as I was doing research for an article I did about modesty concerns for hysterectomy. I’m grateful that the cardiologist or heart surgeon caught on my grandma’s records that she had taken hormones for years and told her she should stop. Her family doctor must have not known that hormones can cause heart attacks. In the medical world, there’s always so much to learn. Some medications doctors and FDA thought were safe have been found dangerous years later.
I once rejected a prescription for eye drops by my optometrist because I was disturbed by the side effects. I accepted prescription for other eye medications from him though. My personal opinion is all patients should research side effects of medications.
I agree with you that a proactive patient is better than a silent patient. I also think patients should be as detailed as possible about their symptoms. Some patients are very vague about their symptoms and it makes it harder for doctors to diagnose them.
Misty
Hi Dr. a friend of mine suggested I read your blog and I'm glad I have. In my world there is a juggling act between being able to capture the doctors attention and being "fired" for non-compliance.
I'm tired of being trivialized and made to feel too stupid and incompetent to join in my own care. I don't like finding things in the records that are false. I'm sick of having to explain paradoxical reactions to drugs.
For unknown reasons I have trouble with communication. (I have a blog and nobody but medical people have problems understanding me.) My medical people hear what they want to hear and see what they want to see, no matter how I try to explain it.
I now have what I percieve to be angina. Now what do I do? I DON'T HAVE indigestion. I don't get nauseated. I have NOT had a heart attack. I am experiencing severe pain. I am very stioc, so if *I* complain, it's serious. I also will NOT allow Versed or any other sedation. No compromises. If I have g/a I fight it. I struggle in restraints. How is this going to work with a heart surgery/intervention?
Alas, there is no hope for people like me in today's medicine. Never Again
Never Again, you must take the time and effort to interview doctors and find the one with whom you are comfortable. Most patients only take on a new doctor when acutely symptomatic and end up with what they immediately got. But if you have time and there is no emergency, you should get an appointment with a doctor for a sit down interview where you have a chance to learn about the doctor and whether he or she will be the "right" one for you and your personality, intellect, medical knowledge, motivation and even your religious beliefs. By the way, this advice is not my own but was, in effect, written in the past by the well-known ethicist Robert Veatch from Georgetown University. So go first and visit a doctor with you having the clout for that first meeting and learn about your doctor. ..Maurice.
This is an interesting topic at many levels. I do not agree that patients should be able to self diagnose, treat themselves, and prescribe their own medication--under the guise of taking responsibility for their own decisiona.
As an educated lay person, I do not have, and cannot expect to get, the depth of information needed to act in that role. I say that coming from the position of personally having almost no trust in physicians. My own lack of trust is magnified by my clear knowledge that I cannot be my own physician and that at some point I will need the expertise that comes from medical training.
I do think patients should be taken seriously and that physicians need to respect the ability of patients to come prepared with knowledge of their interpretation of their symptoms. Only a patient really knows their own body and I think too many doctors discount what patients say. Similarly, only a patient knows the full context of their situation. That context includes their life circumstances, something I think too many physicians dismiss.
If I understand the question here, it is whether I have should have the right to decide, for example, that a pain in my side is X disease, prescribe the medications I think I need for the disease I think I have, maybe order some tests and interpret them myself, then take responsibility for my diagnosis. Should I also be allowed to perform surgery on myself or allow a friend to do that using a how-to guide?
I suspect there are some who would say they should have that right. I imagine those same people would state that if they were wrong and ended up at death's door, no one should help clean up the consequences unless they had the money to pay for all of the needed care--short and long term.
I suspect if it came to that point, that Libertarian would be be as willing as Ayn Rand was to accept Social Security, Medicare, and any other aid needed to pay their living expenses and clean up their mess. AB
AB, you wrote "I suspect if it came to that point, that Libertarian would be be as willing as Ayn Rand was to accept Social Security, Medicare, and any other aid needed to pay their living expenses and clean up their mess." You left out the alternative open to the Libertarian under such circumstances: suicide, a self-directed solution to a self-produced concluding dilemma. ..Maurice.
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