Amy Paturel, who writes for AARP, describes the fundamental dilemma for anyone seeking care from the U.S. healthcare system: "If you've ever felt like your doctor isn't listening to you, it may be true. Studies have found that doctors let patients speak for only 23 seconds on average before cutting them off; in one University of South Carolina study, primary care patients were interrupted just 12 seconds after the physician entered the exam room."
How can we make sure that our questions aren't left out?
It often depends on how much advance preparation patients put into their medical appointments, how engaged they are in the office, and how involved they are in their care after the appointment. It also depends on how honestly we talk about our health issues.
Useful tips and advice on how to voice those important questions:
Don't Be Shy
To get good health care services, we have to be honest and open about our health. (Sometimes a gross or icky symptom turns out to be an important clue, too.)
When feeling too shy to bring up matters that are not usually talked about in polite company, know that privacy is a patient's right. All health care professionals have a responsibility to keep confidentiality.
When uncomfortable asking or answering questions about body issues, first ask what steps that they - or staff in their office - take to make it safe to discuss sensitive topics.
If it matters to talk with a different professional, or to do routine things differently, we should make our needs known. For example, someone with prostate problems might want to talk to a male health care professional; or we might prefer to uncover only the body parts in question and not completely disrobe; or we might be embarrassed by a scar, piercing, tattoo. (It may not be possible to meet a specific need in the moment - but it might be possible. We never know until we ask.)
Prepare Questions Ahead of Time
As simple as it may sound, making a list of questions or issues in advance can be one of the most powerful communication tools. Bringing that list into the office visit, using it to make notes on conversations with the healthcare team, can be a life-saver.
These tools - worksheets and/or the interactive online Question Builder - can help to clarify questions while it also makes a record to print and take along to appointments.
Some people with chronic illness have found it helpful to create an "illness resumé" to give to their healthcare team, especially when meeting new medical professionals. (Patients can also ask that this be added to their medical records.) That document could include information like:
Or, if that advice is hard to remember, this simplified shorter list also works:
Recap to be Certain Nothing is Missed
At the end of the appointment, patients should give their own recap summary of what actions to take, to make sure no miscommunications happened along the way.
In serious illnesses, or when we get shocking news, it can be hard to talk in the moment, and hard to retain everything that is said. Here are some tips for those situations:
If surgery is recommended, ask these questions:
- What’s the goal of this surgery? Is it to repair an injury, correct a defect, remove a possible life-threatening tumor or blockage, to to avoid being disabled?
- What impact will this have on daily life - both during recovery from surgery, and afterwards? Another way to phrase this question is to ask: "What will my daily life look like right after surgery? Three months later? One year later? Will I need help, and for how long?"
- What would likely happen without this surgery?
- Given health, age, and functional status, what’s the most likely outcome for me / this patient?
- What are the most likely ways things could go wrong?
- Are any alternatives to surgery available? If so, what are they, and what are their advantages and disadvantages?
- How to prepare for surgery ahead of time, to increase the chances of successful surgery and recovery?
What does recovery look like, and where will that take place? Recovery happens in stages, and often takes place in different places (in the hospital or medical center, or in a nursing care facility, or at home). What does each stage usually look like, and where does that happen? Are there changes to make at home that would help recovery?
Important questions to ask when cancer has been found:
Medical gaslighting is a recent term for something that's been going on for centuries. It is when a health care professional quickly dismisses patient concerns or symptoms as "all in the head", or insists on looking at factors that aren't really relevant (like weight, race, gender), or blames them on a vague cause (like stress). Missed diagnoses, treatment delays, denial of care caused by medical gaslighting can cause very serious damage.
While medical gaslighting can happen to anyone, it is more commonly directed at:
Health care professionals' lack of knowledge can come across as gaslighting. This is a distressingly common problem for people who are considered overweight or labeled obese, but it is often a problem for people whose medical issues combine physical and mental health aspects, like those with severe asthma.
What can we do if we think we're being gaslit?
Try to keep the conversation focused on our main concern. Some useful language:
If there is strong push-back, try these:
Keep a symptom journal. Document details - when symptoms start and stop and what makes them better or worse - and bring it to appointments.
Make a list of questions to be answered. Ask them during the visit, and in follow-up phone calls or emails if not answered.
Use that list of questions to set the agenda for the visit. Useful medical code phrases are "shared agenda setting", or “my presenting problem is X”. The statement “in our limited time today, I need us to focus on X” can work, too.
Bring a trusted relative or friend along to act as your advocate and witness.
If someone dismisses our concerns as just stress, anxiety, or overweight, ask “what is the evidence to shows that is usually the cause?", or "what is the clinical evidence that de-stressing / meditating / losing weight is the best way to deal with X?”. You can also ask "what is the success rate for that approach?" (for example, often people are told just to lose weight, despite the fact that almost always we re-gain that weight within a few years).
Ask what is the "standard of care for someone with X?". Another way to do this is ask "what is the usual and customary medical practice when a patient presents with those same symptoms?".
If the health care team doesn't offer you the same treatment or diagnostic tests that they would offer someone who is not labeled overweight or who is a man, or is not BIPOC, or is not a middle-aged, middle class person, ask why - and formally request that they state so in a note in your medical record, along the lines of “test Y not offered to patient” or “treatment with Z not recommended to patient”.
Get a second opinion. It may help to talk to a medical professional that shares your gender, race, and/or ethnic background, or who specializes in treating minority patients (including the "health at every size" approach) . See this webpage for more details on getting a second opinion.
Contact a patient advocate. People in this job act as a liaison between you and your healthcare provider, to resolve conflicts and address complaints. See the link below for how to find one.
If all else fails, if you have been harmed because your claims have been dismissed, and can show that standards of care were not followed, file a formal complaint with the health care provider and/or insurance plan. It may need to go as far as a medical malpractice or negligence lawsuit to get action - or could be resolved in-house.
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