Jen* knew something was wrong with her. She’d had undiagnosed bowel problems since she was 12, but in 2017 she knew something was different. She was bloated, had pain in her abdomen, and hadn’t had a bowel movement in a few days. She was 29.
“There was something I can’t put my finger on — there was something instinctive about it that just made me think something’s not right here,” she told Crikey.
She visited her Melbourne GP of nine years who wasn’t concerned given she had had the symptoms all her life and told her the problems would probably pass. But the pain and bloating persisted. So she went to him again and he then recommended some over-the-counter medications.
Jen says she went back to the doctor another time, and then another, and each time was sent home.
“It came across like he was trying to reassure me, rather than being overly dismissive of it, but over time, I could see that his sense of certainty was wavering,” she said. “I could feel the personality shift, and I felt that I needed to push back more sharply.”
Seventeen days after she first presented to the GP with symptoms, she returned home from a night out and was in so much pain she couldn’t get off the couch. She went to the hospital but as it was just before the Easter weekend, she says staff were thin on the ground and junior doctors were manning the ER.
She says doctor after doctor dismissed her symptoms as constipation and suggested she go home. She refused.
“It’s like my brain knew my body was critical,” she said. “I said to the doctors, ‘If I go home, I may die’. ”
Jen’s condition started to worsen. She struggled to move, she could feel her heartbeat change, she started to turn pale. She begged and pleaded with her doctors — something was wrong, she knew it.
Eventually she called a friend who was a GP, who came to the hospital, spoke to staff and insisted on tests.
“My attempts had been futile, but I felt like it was the only choice I had to survive at that point,” she said.
Nearly 20 hours after she went to the hospital, and 17 days after she first went to her GP with irregular symptoms, Jen got a CT scan that found her bowel was twisted, and was rushed into emergency surgery.
The surgeon found she had caecal volvulus, a form of bowel obstruction. Across her life, Jen’s bowel had twisted itself and then — by pure luck — had untwisted itself, causing scarring. A large part of her bowel had to be removed, and Jen now has severe gut dysfunction and health complications.
She believes if it she hadn’t had friends in the medical profession, she would be dead.
“I think I did all the right things … I had the instinct, I acted on it. I took the advice given to me and I held up my side of the bargain,” she said.
Jen thinks the lack of staff on the weekend she visited, combined with difficulties in diagnosing abdominal pain, were the reasons her fears were dismissed. But she also believes gender played a role: “The psychopathologist of women in pain, particularly with vague pain, had an effect.”
The hospital has since implemented a patient-initiated escalation pathway so senior staff are brought in at a patient’s request. Jen now works as a patient safety advocate, speaking to medical students about her condition and the factors that play into cognitive bias.
The tip of the iceberg
Jen’s not alone in her struggles for a diagnosis: a study released late last year by researchers at the Australian National University shows doctors who spend just 30 seconds more learning about a patient’s history were more likely to make a correct diagnosis. And clinicians who misdiagnosed patients were more likely to provide specific observations, rather than a whole-of-patient approach.
Study author Dr Mary Dahm, a senior research fellow at the Institute for Communication in Health Care at ANU, tells Crikey 80% of misdiagnosis is because of miscommunication.
“People often underestimate how common diagnostic errors are,” she said. “Doctors who took more time in their diagnostic statements were more likely to make a correct diagnosis. Doctors who made incorrect diagnoses used more evidence from observation, and used a lot of linguistic features that signify a degree of uncertainty.”
Those doctors allowed more periods of silence, were cautious in their suggestions, and seemed to use the evidence of their observation to to persuade themselves and the patient.
Although the study didn’t analyse the impact of gender in diagnosis, Dahm says that in general, it’s a factor.
“There’s a lot of things that happen to women or to patients that have other areas of inequality, be it race or gender or language background that sort of get dismissed,” she said.
Women historically dismissed
Heart attacks are a prime example of women being dismissed for their symptoms.
Women admitted to Australian hospitals with serious heart attacks are half as likely as men to get proper treatment. Women are less likely to receive beta-blocker medication, preventive medication or be referred to cardiac rehabilitation, making them twice as likely to die as men six months after discharge.
Women’s heart attack symptoms are often vaguer, developing later in the illness than for men, and some diagnostic tests for heart disease are less accurate in women than in men. A risk factor is preeclampsia — high blood pressure during pregnancy. Women also have thinner aortas than men, another risk factor.
But CEO of Women’s Health NSW Denele Crozier tells Crikey these risk factors aren’t largely discussed in the medical community. Questions about preeclampsia aren’t included in the heart quiz, meaning doctors and women often don’t consider it as a risk factor.
“The evidence is there … but the health guidelines have yet to catch up,” she said.
Gender bias in medicine goes back centuries. Men’s bodies have been used as the “standard” human form in medical trials for decades, meaning the effect medication and disease has on men and women is still muddy in many areas.
It wasn’t until 1981 that the first complete modern illustration of a women’s erect clitoris was released, published in A New View of a Woman’s Body.
“When women don’t understand their own bodies, and … it has consequences,” Crozier said.
In the US across the ’70s and ’80s, women were left out of clinical research studies after the thalidomide scandal which killed and harmed foetuses. Only in 1993 did it become mandatory for women and ethnic minority groups to be included in clinical trials.
Australia falls behind other nations in implementing sex and gender analysis in health and medical research. There’s no legislation requiring trials to recruit women in Australia; the closest thing we have is guidelines on ethical conduct from the National Health and Medical Research Council.
What can be done?
Maureen Williams works as a patient advocate at hospitals across NSW and Australia. The 74-year-old entered the pratice after a misdiagnosis cost her a lucrative opera singing career in 1978.
“I was given a scholarship and told that I had a world-class voice,” she said.
When living in London with her two-year-old child, she began to lose weight and feel exhausted. She also lost the top notes of her voice.
Over 18 months after she returned to Australia, she visited nine GPs who told her there was nothing wrong.
“I was a neurotic and Munchausen and an attention seeker, but I knew there was something desperately wrong with me,” she said. “But when you have all those doctors tell us that there’s nothing you start to doubt yourself and I thought, well, maybe I’m going insane.”
Williams became suicidal and underweight and didn’t have enough strength to lift her child. Finally, two years after her symptoms emerged and in desperation, she went to Sydney’s Royal Prince Alfred Hospital and asked if it had a diagnostician.
The doctor took one look at her jaundiced skin and soon diagnosed her with Addison’s disease, an adrenal insufficiency resulting in poor hormonal production.
“The doctor said that if someone had come up behind me and said boo, I would have died,” she said. “The experience was horrific. I lost my singing career and wasn’t able to continue because of the steroid treatment.”
So she set out to find out as much as she could about the disease and heard many stories of doctors not listening effectively to patients.
“To have someone say there’s nothing wrong with you and it’s all in your mind is pretty soul-destroying, really,” she said.
Williams has since got her master’s degree in public health and works as an advocate for the Australian emergency foundation and the College of Emergency Medicine.
She says a key area of focus was training doctors in how to communicate with patients and getting them to accept that the patient knows more about what’s inside their body than they do at any particular point in time.
“Things are changing for the better now; there’s a movement towards patient involvement in the medical profession,” Williams said.
But change is slow to come, and extra seconds a doctor takes listening to patient’s concerns could save lives.
*Jen requested her surname be withheld for privacy.
