I came across this, and thought it worth reproducing here.
A Chronic Pain Patients Bill Of Rights
1. I have the right to have my pain believed by health professionals, family, friends and others around me.
Patients:
The person in pain is the only one who knows how much pain he or she has. Patients, report and describe your pain as accurately as possible. Do not feel reluctant to be honest about your pain. Health Professionals/Medical Providers:
Health professionals, acknowledge that stoicism, reluctance to take drugs, cultural differences, feelings of resignation and other factors often inhibit patients from talking about their pain. You need to work together with your patients to identify and remove these obstacles so that pain can be accurately assessed and treated.
2. I have the right to have my pain controlled, no matter what its cause or how severe it may be.
Patients:
Pain must be understood, as well as believed. In recent years, major advances have been made in understanding pain and its effective treatment.
Health Professionals/Medical Providers:
Members of the health care team must seek all information and resources necessary to make patients as comfortable as possible. Failure to aggresivily treat pain on a timely basis is now thought to be the main cause of chronic pain.
3. I have the right to be treated with respect at all times. When I need medication for pain do not treat me as if I were a drug abuser.
Patients:
Health professionals, the public, law enforcement agents, and even people in pain often believe that using pain-relieving drugs will lead to addiction. Yet this almost never happens. The abuse of drugs is unrelated to the use of drugs for pain treatment. It is normal to want to be comfortable: it is a way of taking care of yourself.
Health Professionals/Medical Providers:
Many of us are fearful about pain medications because we don’t know the facts. Learn the facts about narcotics and other pain treatments. It is your responsibility to help patients and families understand that fears about addiction, sedation and other side-effects are understandable, but often exaggerated.
Most side-effects of pain medications are treatable. Treat them! Never use side effects as a reason to discontinue treatment for pain.
4. I have the right to have pain resulting from treatments and procedures prevented, or at least minimized.
Patients:
Many medical procedures and tests are very painful. Tell your health care team about the pain associated with any treatments, procedures or tests you may have to undergo.
Health Professionals/Medical Providers:
Don’t tell patients that pain from treatments is “unavoidable”, or that “it won’t last long.” That is arrogant and it trivializes your patient’s pain. Pain is suffering, no matter how long it lasts. Worrying about future painful treatment is also suffering. Make sure patients know what to expect when undergoing any procedure, and do every thing in your power to prevent or minimize procedure pain.
I’m sure this could be added to, as well.
As a chronic pain patient, I am not sure if I entirely agree that we should always try to report our pain levels as accurately as possible. I think this could backfire in terms of being labeled as a drug-seeker, and besides, I have often found just the use of the 1-10 pain scale incredibly threatening, in the context of the rest of my interaction with the medical establishment. Instead, I usually try to come up with an answer as calmly as possible that is likely to “make sense” to them in the context of my previous statements, which is also somewhat accurate in terms of my actual level of pain (which isn’t always easy to perceive or accept or describe or confront in the doctor’s office). This usually works.
I avoid “10s” or “9s” at all cost – not that, honestly, I have had cause to actually want to use them, though perhaps I’ve come close – because everything I’ve heard from anyone who actually seems to know what they’re talking about has been that doctors discount them and thereafter view you with suspicion. This may or may not actually be true, but it doesn’t seem like a risk I can afford to take.
On that note, I’ve written something between a “manifesto” and chronic pain people‘s bill of rights, since I don’t even know how to begin to approach the doctor situation and I am feel much more confident in being able to make my friends/family come closer to understanding than a medical professional.
Thanks for these notes on how to perhaps begin to do that, though. What are your thoughts on whether it makes sense to bring “advocates” – friends/family members, who may or may not themselves be medical professionals and therefore better able to speak medical speak – to appointments? I have tried this once or twice with mixed results.
#4 needs to be part of a bill of rights for all patients. In my experience, doctors lie about pain all the time, with the worst example I’ve encountered being an endocrinologist telling me that a thyroid biopsy was “about like an IV.” Maybe if the IV tech is drunk. And blindfolded. And using the biggest needle they can find. The doctor then had the gall to minimize my pain after the procedure.
If I were to add a #5, it would be “I have the right to choose a health care provider I feel comfortable with and to choose a new health care provider at any time.” and include in the Health Professionals/Medical Providers section that patients are customers, and if they don’t like the service they receive, they have every right to go elsewhere. “Doctor shopping” should not be automatically viewed as a scam to get more meds,
This wasn’t quite clear–“Minimized” as in said, “Most people don’t think this is such a big deal,” not as in, did something to actually treat it.
Would be nice if it were true. Please keep pushing for pain patient rights. I just came back from the Princess Anne ER, Virginia Beach and was refused pain meds enough to get to a pain cinic. The ER dos not treat chronic pain nor assist i helping to get to pain clinic either. Then was refused non-narcotic medication. Then refused any meds that will help with detox. I am in pain 9/10 and need help. I want to punch thru a window but holding back. I can see how legit patoent can turn bad as thoughts run thru your mind that don’t normally do without pain. Please help. I also asked police for help without any assistance. cannt find a comfortable position to type. Maybe late for me but there are many others.
Pain Laws have changed due to Doctors and health professionals petitioning the FDA about opoids overuse and deaths to the availability of opoids.
Washsington State passed this law last year and Virginia and other states are following . ER are limiting support to people seeking pain meds.
Also if you do not say your pain is above five, no pain meds. Below five you get Tylenol. above eight, they don’t believe you I had a Nurse tell me ten is dead.
The definition of pain is what the patient says it is and medical personnel are taught that.
Bringing an advocate to an appointment is good when they are part of your treatment such as driving you, assisting you being active.
It also helps if they can verify what you like saying, She has been in the bed over twenty days this month. Do you see what I mean ?
Paintopics.org is a website that keeps update on the legislature effecting pain laws and now congressmen are getting in offering bills restricting opoid use.
Pain patients need to be aware of this as pain clinics are closing and Doctors are afraid of administering opoids because the new laws restrict the amount that can be administered and the Doctor can be proscecuted. Good Luck
I have lupus hep3 jar fiber mi alga I was given a scrip for pot I use carry small amount but this is for a digest prob the pills don’t work lots of sides? Now that my doctor has given me no recourse The scrip from Stanford ore pair dice med Mayberry RFd what are my ? This is not the way people are to act right?
What happened to me should not happen to a dog. If you would like to post a link to my story, you can:
http://www.tumblr.com/blog/medicalandlegalreform