How to Self-Advocate With Your Doctor

If you read my last post 169 Minutes Navigating Health Care you already know how frustrated I am with the health care system. My years as a health policy expert have afforded me a certain level of understanding that helps me to push and prod on the system when it is letting me down but it still is not easy (there is no resolution yet btw to my ongoing saga with Mayo and Blue Cross Blue Shield).

A key area where patients often get stuck is in the medical appointment where clinicians are often tasked with running a tight ship, resulting in 15 minutes with your doctor. We’ve all been there and it can be a very frustrating experience. I am writing in my manuscript about this topic - feeling unheard and unseen in health care - with a working chapter title: “Are you there doctor? It’s me your pain patient”. I provide an example of being completely unseen during a medical procedure at an academic medical institution’s pain center and explain why this is a product of a health system with misaligned incentives and poor training.

Being seen and heard by your doctor can be challenging and for people like me who live in chronic pain these problems are exacerbated for a few reasons:

1. While chronic pain is a major driver of physician visits, most medical school curricula have limited pain education. Requirements are commonly under 10 hours or less or 0.3% of overall training.

2. Doctors have even less training on the biopsychosocial nature of pain and are ill-equipped to tackle mental health issues that are often associated with it which as depression and anxiety which are 5 times more likely for people with chronic pain.

3. The health care system still delinks physical and mental health and while mental health care should be a major component of chronic pain care, the system’s siloed reimbursement and clinical structures put up roadblocks.

4. Stigma also plays a major role in most pain patients' care experience and pain patients have often reported that they are not believed by their doctors or are seen as “drug seekers”.

But what can we do about this? How can we feel more heard and seen in our health care as pain patients? Here are some tips:

• Be open and honest with your health care practitioner. The only way to get the right care is to be honest with yourself, and then transparent with your doctor, about how you are feeling about your pain, especially if your mental health is suffering.

• Keep a diary that includes specifics about your feelings and emotions associated with your pain. It can be a mind-numbing experience to discuss the issues in a short doctor’s appointment. Writing down in advance what you are experiencing will help you get your points across efficiently.

• Explain to your doctor how your pain is impacting your life. Include an explanation of how pain impacts your job, your daily activities, and your family and social environment.

• Try not to be afraid to raise concern if you think you are experiencing bias by your doctor. This is a common issue for women and racial minorities, where physicians minimize their pain. Consider noting that you feel your concerns are being discounted and that the data supports that your pain is real.

• Bringing a partner! Having someone familiar with your pain challenges in the appointment can be an effective way to ensure all your points are made and help to validate the concerns you have.

Other strategies that support better interactions with the doctor include practicing self-advocacy tactics with a trustworthy family member or friend and preparing questions in advance. It's the same process as when I am preparing for an appointment with an important client. I would not show up to a work meeting without thinking through the agenda, looking at my notes, and developing in my mind what the goal is to accomplish. Why would a health care appointment be any different?

We can take all these steps but there are going to be times when we simply must seek out new care providers. Key questions to have ask when evaluating potential new pain care providers include:

• What is the practice’s approach to pain care and management?

• What type of care approaches do you regularly use?

• Is multi-disciplinary treatment part of your management of pain? If yes, can you explain what types of methods are involved?

• Do you have a mental health professional in your office, or do you have a relationship with a pain psychologist to refer patients to?

• What education supports to you provide for chronic pain?

I have personally found these tips very helpful in gaining better footing in medical appointments. It is not always easy and can be intimidating but with practice and tools at your disposal, you can shift from riding in the back seat of your care to being the driver in your care journey.

Do you have any of your own tips for how to have a successful medical appointment? Please leave a comment:

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