How Having A Patient Advocate Can Save Your Life

Here's the bad news: If you are old, a woman, or disabled, you are less likely to be trusted when you complain of extreme pain than if you were a young, able-bodied man. You're also more likely to be refused diagnostic testing when you report serious symptoms, or to have your heart attack go untreated until it's too late. The consequences of medical bias are very serious indeed, and do cause unnecessary deaths.

The good news? When armed with knowledge about bias, and with a patient advocate to fight your corner, you can overcome the odds.

When Doctors Dismiss Women's Pain
Rachel* was taken in to the ERby her husband who recognized her acute pain as an indication that something was disastrously wrong. She had a classic presentation of ovarian torsion (a condition which requires surgery, ideally within eight hours of onset, to prevent it from leading to ovarian loss, sepsis and death), but she was ignored in a corner for hours by ER personnel who didn't believe how severe her pain was. A doctor treated her for kidney stones, without examination and without checking the CT scan he'd ordered. Hours later, Rachel's husband succeeded in 'hassling' a different doctor into checking the CT scan, which revealed a huge mass on Rachel's ovary. After 14 hours, Rachel finally received the emergency treatment which saved her life (although not her ovary).

A year later, Rachel is still traumatized by the panic of not having been heard by the only people who could help her. It was her husband's insistence that something else was wrong which convinced the doctor to reexamine her, which only then brought acknowledgement of how much pain she was in. Without him as her patient advocate, Rachel would almost certainly have remained on insufficient painkillers waiting for a non-existent kidney stone to pass, while her ovaries died and rotted within her.

A Reddit thread that was sparked by this article makes painful reading. Women report having had abdominal pain dismissed for years as 'women's problems' before a doctor took them seriously enough to discover the cause. Many a mother/sister/wife died of ovarian cancer, after years of abdominal pain, back pain, and vomiting that was dismissed as anxiety, stress, or being overweight. Endometriosis is a debilitating condition which 10% of women suffer from, but it takes an average of 10 years to be diagnosed while women are dismissed as over-reacting to routine period pain.

For decades, maybe even centuries, women who complain of extreme pain have been infantilized or disbelieved. Time after time, women have to prove that they really are in pain before medical staff will respond appropriately. It's a terrible catch-22: ER staff often will not prioritize a woman for diagnostic tests like MRIs or CT scans because they don't take their pain seriously, but only after they receive the evidence that those tests provide will they accept that the female patient is truly in pain. (I'm not going to go into the underlying reasons why women are repeatedly not trusted to report on their own symptoms, but you can read more about it here .)

When Being Old Is Punished By Pain
Once you reach your late 60s, your ability to represent yourself disappears. Older men and women who complain of abdominal pains are all too often written off with gas, digestive issues, or just 'old people's grumbles' when they may be suffering from something far more serious. One Reddit user described bringing his 72-year-old mother to the ER two days after she'd fallen and suffered a hemorrhage from her head. Although that earlier hemorrhage put her at high risk of stroke and she was slurring her words, confused, and sleepy, she was ignored for three hours, until he kicked up a fuss with the nurses for her.
"It makes me incredibly angry that old folks aren't taken seriously. I can't even imagine how long they would have let her sit there in the corner of the waiting room had I not been there to throw a fit on her behalf."

A recent article in Medscape discussed a number of reasons why doctors might not take the health concerns of elderly patients seriously. Whatever the cause, Medscape concludes that
"On the basis of a great deal of evidence, many doctors aren't willing -- or seemingly even able -- to provide sufficient care to elderly patients."

It seems that too many health-care workers believe that old age is an illness that brings non-negotiable pain and discomfort. They don't give enough weight to an individual asserting that his/her pain is worse than run-of-the-mill old people's grumbles.

Disabled And Invisible
The other condition that prevents medical personnel from hearing you is being disabled. Someone with a physical or intellectual disability isn't trusted to report on their own pain and discomfort levels. Even when a patient with a disability is asked directly about their symptoms, their reply is frequently ignored in favor of whatever visual information can be gathered in an often-rushed once-over by a medical personnel.

My friend A is disabled and confined to a wheelchair. She lives alone and has to negotiate her own care by herself even when she's sick, or dizzy, or petrified at what is happening to her body. Doctors repeatedly dismiss what she tells them about her symptoms. Once, my husband (who is also a doctor) spoke to her physician to explain what she was experiencing, insist that they carry out certain tests and give her painkillers which they had been refusing. She told us later what a difference that made: after a male doctor told them the exact same symptoms that she had described over and over, she received the tests and the pain meds that she had been pushing for. She wasn't sure whether she felt more grateful to my husband for advocating for her, or angry that a man had to speak for her before her voice could be heard.

It's only recently that researchers have begun to study the ways in which age and gender bias impact the level of healthcare that a person receives. One study from the University of Rhode Island tracked the medications given to male and female hospital patients aged between 44 and 71 during the 12-72 hours following an operation. It found that people aged 61 and younger were prescribed with painkillers more frequently than patients aged 62 and older, while women who complained of being in pain were more likely to be given sedatives, but men were more likely to be given painkillers. Another sign that women and older people need someone to advocate for them to receive the necessary medical response.

What You Can Do To Counter The Risks
It's important for patients and patient advocates to know about these medical biases so that we can take action to neutralize them. If you're advocating for your 70+ year old wheelchair-bound mother and you know that her pain could be belittled and her symptoms overlooked simply because of her age, gender, or disability, you will push harder for medical professionals to recognize her pain. You'll be more likely to get a second opinion if you feel that the doctor didn't really check her, and to stand your ground when requesting diagnostic testing that could prove how serious her condition is. Knowledge of bias gives you power to push back against that bias.

If you are a woman, in or beyond your late 60s, or have a disability, remember that this bias exists. If you experience major pain and/or symptoms that something is badly wrong in your body, don't accept it if the doctor tells you you're overreacting. Doctors are also human and their bias is usually unconscious. If you feel that your doctor hasn't heard you, boldly challenge his/her assumptions. By knowing that it can be 'them' and not 'you', you'll be able to stand by your experiences.

Finally, let's repeat that everyone needs an advocate. Regardless of age, gender, or orientation, no one is able to track medical mistakes or demand a particular treatment if they are doubled over in pain. Being stuck to a hospital bed or feeling too weak to venture out out of your room prevents you from running after that doctor to ask the question you didn't have time for, or to track down a nurse when your call is going unanswered; but your advocate can do all that and more. Having an advocate enables your voice to be heard louder when you are unable to shout. If you are female, old, or disabled, your life may even depend on it.

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