Patient Advocacy

A Patient’s Right by Barby Ingle
(Author of The Pain Code – Book and Journal)

Often times I run into patients who have been treated poorly or perceive they have been treated poorly. I have included this section on the Patient’s Bill of Rights so that you know what to expect from your doctor. Doctors often times see a large number of patients each day. If you feel that some doctors are not listening to you, not understanding you, or being rude, try talking to them about it. Often times they are just running behind schedule, have something personal in their life going on, or even are upset that they cannot help you more. Your reaction to what you perceive can play a part in the care you receive. The more respect and consideration you can give the healthcare staff, the more compassionate that they can be for your situation. Considerate and respectful care means that the healthcare professional is understanding, caring, and thoughtful. They show these attributes by being polite, considerate and courteous. You should also show them respect even when you are feeling bad or not heard.

You have a right to your records. I order my medical records from my providers after each visit. In some states, they are able to charge you for such copies. In Arizona, where I live, the law states that if you are using them for future care, they cannot charge you. Check with your state for the law on this practice. I keep all of my records so that I can bring the ones needed to new doctors and can also refer back to them to double check a medication for past reactions and usefulness.

You should also check your records for mistakes. Healthcare professionals, like all humans, also do not always take perfect notes or a person transcribing their notes into your file can make a mistake. It is important to do your own research about recommended treatments and you can refuse care in most cases. Your healthcare provider needs to inform you of the risks you are taking by not following the recommendation they have made. If you are not comfortable, speak up prior to service.

Records are confidential unless there is a risk to you or others or in a court case where they are used as admissible evidence. There is more in your records than medical information. Doctors write in their records more than just physical assessments. They write down your demeanor, if you were dressed appropriately, if your hair is brushed, if you were upset, anxious or combative, and so on. It is in their opinion and discretion as to how they perceive you. In 1996, the United States Department of Health and Human Services (U.S. – D.H.H.S.) issued a privacy rule that was finalized by the Secretary of Health and Human Services in 2000. The U.S. – D.H.H.S. is the official central governmental hub for all Healthcare Insurance Portability and Accountability Act (HIPAA) issues including rules, standards and implementation guides. Keeping HIPAA privacy laws enforced can assist you in receiving proper care and from letting outsiders, like your employer or others, know your personal health.

The American Academy of Pain Management has also developed a Patient Bill of Rights. “It is an expectation that compliance with the Patient’s Bill of Rights can contribute to an effective program for the patient. All pain management activities are to be provided with an overriding concern for the patient, and above all, with the recognition of the patient’s dignity as a human being.”

As a patient, I expect to receive attention and respect from my healthcare providers. I have the right to considerate care and to expect that they will follow through. If the provider does not, then I find a new one, which I have had to do in the past. I have had a doctor say, “I know what you’re trying to do, and you will not get away with it.” He did not perform any tests on me, but when records were ordered, it turned out that there were results from a test that I did not undergo. When either the provider or patient shows disrespect, proper treatment will be hard to accomplish. When communicating with my providers, I hope that they will give me complete and current information but do not always expect it. I have learned that it is also important to research information on your own.

Your doctor should be expressing his final diagnosis, proposed treatment and expected prognosis in non-technical language so it is easy to understand. In some cases, I have had doctors share the information with my husband because they could see that I was not able to concentrate due to the pain and it was important to have the information so that we could better prepare for what was to come. After this information is shared to my husband, or me we do our own research. In the beginning, I did what every doctor told me to do whether it was something I wanted to do or not. I learned through trial and error that I have the right to refuse any medical treatment. I listen to the doctor about medical consequences for my decision but no longer expect the doctor to make any final decisions for me.

Before a procedure, I want to know why the expected procedure would be an option, what are the benefits and drawbacks, if there is anything else available that could give me similar benefits with fewer risks. I also need to know if my doctor will be bringing in any assistance for the procedure, and how many times the doctor has performed this procedure on other patients. I also want to know how long the recovery is and what is entailed in the recovery. Will it be a few days or will it be months of physical therapy?

I like to know if the procedure is experimental. For instance, the Radio-frequency Ablation I undergo is considered experimental by insurance for RSD. Most treatments for RSD are experimental because there is not one thing that “cures” it and insurance company caseworkers are not always on top of what specific procedures are helpful for a patient. I have had to write letters and have my doctors write letters to explain why a particular procedure or medical intervention is appropriate for me and fight to get coverage. I have been in a situation where a doctor has not done many of the procedures or wants to perform research or a biopsy to share the informational aspects with others. I have signed papers to release some of my records for this purpose and have had students attend some of my surgeries to observe what my surgeon was doing so that they could use the experience as a learning tool.

If you are in a position to injure yourself or others, then there are some laws that govern the doctor to perform medical intervention without consent, but in most situations it is up to you or your medical proxy to make the decision. I noticed that, in my records, when I underwent a procedure or surgery, the doctor would write, “the patient has elected to have the surgery performed after I explained the risks and benefits to her”. However, from my perspective, the doctor was telling me that I had to have the procedure, and I did not have a choice. In some of the cases, I would not have had the procedure had I known my rights. I now know that I have the right to receive all information the doctor has on the medical plan being offered and that I also can have time to think about what I want to do,  thus, allowing for my own research and decision-making.

Finally, I expect to have my doctors communicate with each other about my treatment plan. It can help facilitate greater care, less medication mix-ups and fewer complications. When everyone works together as a team with me leading the team, I know I am getting the best care possible. Prompt and proper pain management is a basic healthcare right, and you as a patient should not settle for anything less.