Be prepared to put up a fight when you’re sick
It’s a nightmare scenario. A loved one goes to the hospital, only to be sent home without appropriate treatment or care, leading to an urgent, even deadly, medical crisis.
That was the case with a young Ottawa woman who died of meningitis last week after being sent home from Queensway Carleton Hospital with a prescription for penicillin and an uncertain diagnosis. Twenty three-year-old Lily Mueller was brought back to the hospital later in the day after her condition worsened. In a matter of hours, she was dead from still-undiagnosed meningitis, leaving her shattered family seeking answers.
In an age of increasingly complex and busy medical systems, how can patients and their families be sure they’re being properly diagnosed and getting the treatment they need?
Patient advocates say there are steps every patient and their family should take to ensure their concerns are heard and that they get the treatment they require.
The rise of patient navigators, or advocates, as a business model across the country is a sign that many people feel they need help getting the best care out of the health system. Navigators say they can get better results for patients, although they must pay for the service.
Doctors, too, have embraced the movement, which can help patients manoeuvre through complexity and gaps in the health-care system, and avoid unnecessary harm.
There are things individuals should do, as well.
Susan Hagar, founder of Ottawabased Nurse on Board, which she describes as care managers to help patients navigate the system, offers some simple steps everyone should follow when they head to the hospital or their doctor’s office.
1. Take notes. Hagar and others recommend everyone bring a notebook to appointments or the hospital. It should contain detailed notes about symptoms, when they began, what set it off, how painful it is and when it happens. It should also contain a chronology of events, if necessary, and any treatment given. Equally as important, notes should be taken during meetings with health professionals, getting their names, their advice and what tests are being done.
2. Don’t go alone. If possible, patients should have a family member or friend, or paid navigator, with them. A second set of ears and a second voice can make a big difference, says Sandi Kossey, senior director of the Canadian Patient Safety Institute (patientsafetyinstitute.ca).
3. Bring your health history and a list of your medications (or the medications themselves). 4. Know your family health history. 5. Make sure you understand what’s being done and why, including all tests and treatments.
6. Be firm, if necessary. If you or your loved one feels they’re not being heard, make sure you repeat your issue and a health professional investigates.
7. Do not leave without a plan, including knowing what to expect and do if your condition worsens.
8. Don’t be afraid to go to the emergency room.
Hagar said she and her staff see worrisome issues all the time in the health system, including misdiagnoses.
“Unfortunately, there are many stories that don’t make headlines and are happening all the time.”
People have to plan when it comes to getting appropriate health care, she said.
“When you have a problem, you really want to go into health care prepared for the encounter.”