Picture this: After years of receiving treatment from your medical provider, you are suddenly told you can no longer continue your current treatment plan. You are being referred to a psychologist to learn coping skills to manage the symptoms of your complex illness/condition. Such sudden discontinuation to care can create worry and possibly other kinds of harm. This is the scenario many people with complex illnesses/conditions find themselves in today.
keep detailed records
First and foremost, do not panic; it is common to feel overwhelmed when facing sudden discontinuation of your care.
You need to build an argument for why you need the care you have been getting. You should keep detailed records to document the proposed changes in your care plan. Consider documenting:
- Dates & times of events (appointments, interactions, phone calls, etc.)
- Details outlining any and all conversations
- Individual names, titles, and contact information of all persons you have spoken with/encountered
- Any other relevant information
The specifics of your situation will dictate the steps you need to take so you can effectively advocate for yourself. Let’s take a closer look at a few common scenarios patients are facing in the current medical environment, including the steps you need to take so you can advocate for yourself.
If your doctor no longer wants to provide your PAIN Management prescriptions
First, get your pen and paper ready and ask your doctor to explain their reasoning.
Take detailed notes regarding the reasons for the proposed changes in your care plan. You might categorize your doctor’s feedback into two columns one representing the statements you agree with and the other, statements you disagree with; enabling you to respond in a concise and organized manner. Responding this way shows the provider that you are willing to work with them (but only on the recommendations you are comfortable exploring).
building your argument: CDC guidelines
You may need to remind your provider that the recommendations made by the CDC are merely guidelines and not a rigid standard of care. Print a copy of the CIAAG “Know Your Rights” flyer and give a copy to your provider. This flyer outlines the federal announcements from the CDC, FDA, and HHS; they all advise against the misapplication of the CDC’s Opioid Prescribing Guidelines. That it comes from a reputable organization helps give it weight.
Federal announcements, white papers, and research reports are valuable tools when discussing your medical options. Furnishing this type of information demonstrates to your provider that you are informed regarding the current policy rules and regulations that may be influencing your care.
enlisting a patient advocate
Despite your best efforts to work with your provider towards a mutually agreeable decision, they may still be unwilling to continue prescribing your previous medication regimen. You may wish to consult with a patient advocate if this occurs.
There are several aspects to consider when seeking the assistance of a patient advocate. The type of advocate you will need depends on your situation. Insurance carriers have dedicated teams of patient advocates to help their policyholders (you, the patient) navigate the complexities of the healthcare landscape. Patient advocates can help facilitate discussions between you and your provider. You may also wish to work with a patient advocate if you decide that you would like help finding a new provider to assume your care.
Situations that may require the assistance of a patient advocate include, but are not limited to:
- Your provider is changing your care in a way you disagree with
- Your provider is refusing to prescribe medications that you feel you need
- Your provider made recommendations you believe are inappropriate for your condition
The patient advocate may need a list of treatments you have tried and failed, a summary of your relevant medical history, projected future medical needs, concerns you have about the provider, your expectations in working with the patient advocate, and what outcomes you hope to obtain.
seeking a second opinion
Despite your best efforts to work with your provider (along with engaging the assistance of a patient advocate), you may still find your provider unwilling to continue your previous prescription regimen and, or treatment program. We recommend you seek another provider if this happens. You may continue to work with your designated patient advocate to find a new provider to meet your medical needs.
A new provider may be unwilling to assume your medical care “as is.” All providers will need to review your medical records to assess the appropriateness of your current care plan; therefore, you want to give your provider as much information about you “up front” as possible. Providing an accurate and complete medical history enables the physician to review your case, determine if they are comfortable providing the prescriptions you need, and accept you as a patient.
Due to the complexity of medical care, a physical examination may be necessary for addition to reviewing your medical file prior to the provider committing to a treatment plan. A patient advocate can discuss your case with the potential provider’s office at this time to ensure they can fulfill your care needs. Thorough preparation will ensure better continuity of care.
The relationship between a patient and provider based on the ability to have open communication and collaboration is ideal; therefore, you need to be open and honest about your needs. Patients have the right to advocate for changes or to find a new provider that better suits their needs.
things providers think about
Patients who need scheduled medications face the added complexity of provider fear of reprimand from law enforcement for prescribing scheduled medications and concerns surrounding potential drug diversion.
A patient who uses scheduled medications can advocate for themselves by presenting a list of previous treatments they have tried and failed, the duration of the treatments, and the treatment outcomes (both pharmacologic and non-pharmacological treatments) to the provider.
When dealing with the issue of managing pain, a provider will typically take the “go slow and start low” approach to ensure patient safety. You may have already tried and failed several treatments and medications; therefore, let your new provider know so they can eliminate these as potential options.
helps to keep an open mind
When working with your provider, you want to determine the best treatment program that fits your individual needs. Patients should be open-minded to trying new modalities and approaches for managing their painful illnesses and conditions but should not have to sacrifice an effective treatment to do so. Patients should be able to explore alternative or complementary approaches in addition to using medications and should not have to abandon one in place of another.
filing a complaint
After all is said and done, you may desire to file a complaint against your provider for mismanaging your care. Something to keep in mind is that filing a complaint is a very serious step so make sure you know what you hope to gain from doing so.
When numerous complaints are filed, a pattern of events becomes established that the state can track; identifying individuals who may need to be counseled. You will need to determine where to file the complaint. Circumstances surrounding your complaint will dictate where to direct it.
Possible offices to file complaints include (but are not limited to):
- State Medical Board
- Hospital or Medical Offices
- Civil Rights Office (state and, or federal)
- Insurance Commissioner
- Board of Pharmacy
When filing your complaint, focus on the facts of what took place; this is where your notes will be helpful; therefore, the more detailed the notes are, the better.
No matter your specific situation, it is important to know your rights and to be proactive in advocating for your medical needs, especially in today’s changing medical environment. The most important thing you can do is to stay persistent; do not give up, and always conduct yourself professionally. The calmer and more goal-orientated you are in your approach to self-advocacy, the better off you will be at attaining your goal.
additional reading:
from the Editor:
The article was written by Lauren Deluca and edited by Jim Sliney Jr.
Founding President & Executive Director of Chronic Illness Advocacy & Awareness Group (CIAAG). Lauren spent her career as a Commercial Insurance Account Executive & Risk Manager for mid-large sized organizations in a number of industries including, but not limited to, Financial Services, Colleges/Universities, Life Sciences, Manufacturing/Distribution and the Transportation Industry.
In 2017, she Founded CIAAG as a result of her experience being denied appropriate medical services which lead to the disabling condition(s) she lives with today, including intractable pain syndrome.
Lauren is the spokesperson for CIAAG. She coordinates all business activities, partnerships and the strategic direction of the Organization. As a part of her duties she speaks at various public and private events and conferences. Since founding CIAAG in 2017 she has been featured in a number of news articles, radio interviews and television shows.