Stories
One dose was lethal….
Melissa Sheldrick
My son, Andrew, received his compounded medication that was made with the incorrect medication. The substituted medication was very strong and one dose was lethal. Several policies and procedures were not followed and the lab was found to be disorganized. Using best practices and adhering to organizational standards would have prevented this error.
Do you hear us?
Theresa Malloy Miller
There was a general lack of ‘teamwork’ and miscommunication in the care for our son Dan. It seemed that the healthcare team did not listen carefully to what Dan was sharing or our concerns about Dan. The observations of nurses were discounted by medical staff. Charting errors led to misdiagnoses. And finally, an incorrectly administered sedation took away any chance Dan had for survival.
What happened to Dan completely destroyed our confidence in our healthcare system. Dan’s friends were very hesitant for years to seek healthcare. For healthcare to work, the patient and their family/caregivers need to be at the centre of their care team with access to their personal healthcare record. Healthcare professionals need a system around them that supports them to provide the best care possible. Provincial governments need to commit to support and strengthen the Canadian public health system with adequate funding.
I feel safe when the information I bring to a healthcare appointment is listened to carefully and considered in my care plan.
Include Essential Care Partners to Help Minimize Patient Harm
Beth Campbell Duke
After being knocked off his Vespa by a driver, my husband experienced delayed diagnosis while in hospital. They missed a developing soft-tissue injury – a perforated bowel. It resulted in sepsis and required an emergency surgery during which he aspirated into his transplanted lungs. He was on ECMO for a few days and left the hospital 6 weeks later with an ileostomy that has required 2 follow-up surgeries. He has ongoing pain and brain injury issues as a result of this experience. The only feedback I had from a surgeon was ‘these things happen’. We are left struggling to get him care and we are both distrustful of engaging with our healthcare systems as a result of our experiences. He has said he won’t consent to another hospitalization or even invasive testing.
Tony is in a high-risk group for sepsis, so they could have done better monitoring and been more aware of the risks. I believe critical information was lost when he was transferred from Victoria to Vancouver. He was also put on the transplant ward where they aren’t as up to speed on the delay in the development of soft-tissue injuries as a trauma floor would have been. This requires specialty teams like transplant to cede authority to others in the hospital. Transplant, honestly, doesn’t work and play well with others. I feel relief now whenever he’s bad enough to go to ICU because those physicians get data from me. They aren’t afraid to make a plan and take action where others stand around and worry about stepping on toes.
There’s no easy solution for this other than physicians being more aware of sepsis, who is at risk, and paying attention to the Healthcare Excellence Canada 10 signs of a rapidly declining patient. It really is a system failure at many points, any of which could have changed the outcome. Without a formal step to review these failures nothing will improve.
Have you ever felt abandoned by those you trust the most when you were most vulnerable?
Joni Magil
I’m going to tell you a story about my husband’s health care journey. A journey that included 10 distinct health care professionals. As he sat there writhing in pain, each pronounced that there was nothing wrong with him and most showed him the door.
Health care professionals recognize they have limited knowledge outside their trained scope or specialty. What happens when these practitioners have reached their edge is a critical juncture in the patient journey. My name is Joni. I am here to tell you that more tests, more drugs or simply giving up on their patient is not patient centred and is not okay.
I am here because I believe there is a better way and I want you to see the journey through my eyes and understand why this is so very important.
It was one of those rainy, dreary Victoria winter days when the dampness permeates your body, and the gloom stifles your mood and energy. We were settling in for some binge-TV watching and I can still see my husband Dan on the sofa gently rubbing his abdomen and grimacing in pain. It comes and goes, he says, but seems to be getting worse. “ It hurts more in the afternoon and after exercise but doesn’t seem to be related to the food I eat,” he intones as he tries to isolate the problem prior to visiting the doctor.
The visit to our family doctor was the first step in our journey. Some poking and prodding, painkillers and a referral to the urologist was our next step. Prostatitis the urologist exclaims! Very common in men of a certain age and easily treated with antibiotics.
The prostatitis recedes but the pain remains.
Back to the family doctor who confidently diagnoses diverticulitis based on some of the imaging and tests completed. Very common in men of a certain age. No problem, easily treated with antibiotics.
Or not.
Five times antibiotics were prescribed at which point we realized our family doctor had reached the edge of his expertise. At our request, he provided a referral to an Internal Medicine specialist who x-rayed, radiated, and palpitated before announcing there was nothing wrong and showing us the door.
The pain increased in intensity and frequency.
Dan acquiesced to an ER visit. After more tests, scans and prods, the ER physician was unable to find anything wrong – and other than providing more painkillers was happy to send us on our way – because, after all, there was nothing wrong. With some insistence, he agreed to fast track a gastroenterologist consult. More tests, scopes and scans and the gastroenterologist almost sheepishly pronounced Dan in perfect health although he was the first to acknowledge there was something wrong and that he was at his edge – he couldn’t help.
We were on our own and feeling abandoned. Various diets limiting certain foods were tried, a naturopath consulted, pelvic floor physio and functional specialist visits ensued. And any positive change in the pain remained temporary.
And then one day several years later, Dan was sitting in that same spot on the sofa, rubbing that same tender spot on his abdomen, when he became feverish and started shaking. His Apple Watch alerted him to an unusual increase in his heart rate. These symptoms prompted a call to the family physician who suggested a local walk-in clinic who sent him post-haste to the hospital with a diagnosis of life-threatening sepsis.
Life threatening.
After numerous physicians could not find anything wrong with him, some gently inferring it may be ‘in his head’, here he was in the ER being treated for life-threatening sepsis. Is there a connection? Of course not, the doctors say. IV antibiotics quickly brought the sepsis under control and then it happened.
Several days into treatment, Dan is sitting in the ER patiently watching the life-saving liquid antibiotic drain into his body and he turns to me and says …..”you know what?”
“All my abdominal pain is gone!”
REALLY???? Is there a connection? We think so. It took several attempts to impress upon the ER doctor how long we had been on this journey and this instant relief couldn’t be coincidental. A little skeptically, he said that if we wanted, he could refer us to an Infectious Disease specialist……. we quickly agreed.
Over the last several years we have worked with an infectious disease specialist. After unsuccessfully trying to isolate the offending bacteria, it appeared Dan was about to again be pronounced healthy and bounced back to our GP. Somehow our persistence, pleading, arguments and perhaps the obvious toll this journey had taken on us both convinced her to stick with us. Seemingly against her better judgement, different antibiotic approaches have been tried to manage the issue. She felt like she was practicing ‘voodoo medicine’, we were told on one visit. The infection still occasionally rears its ugly head requiring a hospital visit and IV antibiotics, but the mystery seems to be solved even if the culprit has not been identified. Finally, after over 5 years, the pain is being managed.
I can’t describe the emotions of watching someone you love in extreme pain and hearing from one doctor after another that there is nothing wrong and no, I won’t see you again – but I can prescribe more painkillers. Dan kept getting kicked back to the curb, was not finding any relief and felt totally abandoned and ignored by those he trusted the most when he was most vulnerable.
Only one physician out of all the health professionals we visited was persistent, willing to think out of the box and go to the edge of her training and knowledge. Only one ordered tests and made other referrals that, according to protocols and processes, should have been handled by a family physician or other specialist. Only one listened and truly practiced patient centred care. Only one. Certainly, we can do better.
Discrimination based on obesity can be deadly
G.V.
My father died at 55 from metastasized lung cancer, as confirmed by the autopsy I requested. He weighed over 400 lbs and had a genetic degenerative spine disease, which led doctors to attribute his issues to his weight and spinal curvature affecting his lung capacity. Despite assumptions, he was found to have no heart problems, wasn’t pre-diabetic, and showed no typical obesity-related diseases. His high white blood cell count suggested leukemia, but no further tests were done. He lived housebound for five years with shortness of breath, home oxygen and several trips to the hospital; there were obvious signs of a problem with his lungs.
I believe more testing would have prolonged his life. It still angers me that the Ontario medical system overwhelmed him with shame and laid the entirety of his illness on his obesity. Despite my efforts to advocate for better care, he didn’t want to cause trouble and accepted his treatment of home oxygen and Oxycotin for pain. Our whole family felt shamed during this experience and it has affected how we access healthcare now.
His experience of neglect due to obesity was not unique; his twin died similarly of being shamed and not treated for her health complaint, while his other six siblings are equally as obese and are now living into their 80’s. I would like the medical community to understand that contrary to popular opinion some multi-generational families have been/are fat and overall healthy until their natural death.
In my grief, I sat alone with the physician who read me the autopsy report and I learned my dad died of lung cancer. The doctor warned me to prioritize diet and exercise to avoid a similar fate and all the shame came rushing back while I quickly explained my exercise and healthy eating routines instead of the anger I now feel for the way the medical system failed my dad.
If a tree falls in the forest and a doctor doesn’t hear it….
Laurie Kay
In 1989, my husband and I were overjoyed when our first IVF attempt was successful. Three embryos had been transferred; an ultrasound showed one fetus in utero. A few weeks later, we found out that the other two were stuck in my Fallopian tube, which ruptured and necessitated emergency surgery. The surgery was successful, and the embryo in utero (our son) was just fine. Phew!
As I was recuperating in hospital, a friend who worked in the pathology lab told me that the two embryos I lost were perfectly formed at 8 weeks gestation. I arranged to see them, which was an emotionally ambivalent experience – I was sad for the babies I lost, but relieved that one was still in utero. My friend was right – they were so perfect in so many ways. They became stuck to the Fallopian tube and ovary that I also lost in the procedure; their eyes were black and not yet formed, and I couldn’t make out what their gender was – they were only the size of my smallest fingernail. But I marvelled at the perfect curve of their heels and ankles and their tiny still-forming fingers and toes. It was a special moment that I will never forget.
A few years later, I was consulting a gynaecologist at a different hospital about an unrelated matter. He asked me about my history, so I mentioned this experience. He said, “No, that didn’t happen.” I was stunned. I thought I must have misheard him, so I asked him for clarification. He said that the embryos would only have been a mass of jelly and not identifiable in any way. I told him firmly that he was not correct about my experience and that I had, in fact seen my embryos. He got up and left the room, without explanation or even telling me whether he was going to return. When he came back about 15 minutes later, he said that he’d spoken to the Dr. in the IVF program and he had verified my claim. No apology.
I endured the rest of the consult feeling like a third class nobody. I decided that I would not ever return to see this doctor – how could I possibly have faith in someone who clearly had no faith in me? He so easily dismissed what I had to say, and was so quick to assume I had made it up. I am still shocked at the arrogance of a doctor who presumed he knew everything and that there was nothing more that he could possibly learn from a mere patient. Apparently for this doctor, nothing happens unless a doctor confirms it. It reminds me of the old adage, “if a tree falls in the forest and no one hears it, did it really fall?” It’s a cautionary statement about our egocentricity as humans that apparently some doctors should heed too. This incident has led to my reluctance to share this part of my medical history with doctors, out of fear that even if I’m not told outright that I am lying, some doctors may think that without expressing it. This is unfortunate for all concerned because although my situation was clearly unusual (I didn’t know that at the time), it is important to acknowledge that anomalies do happen in medicine, and we should all keep an open mind.
EVERY patient deserves excellent care
Donna Davis
Our son was a 19 year old oil rig worker when he had a single vehicle rollover. Unfortunately, the care providers-from our local hospital to the tertiary care centre he was transferred to- stereotyped him as just another young, drunken driver involved in a motor vehicle accident. The feeling we got from the providers was that he deserved to be where he was. Except there was no alcohol involved.
We’ll never know what caused his accident but the result of the personal bias of the providers is known. Vance died because he was not given the treatment required for a head injury as serious as his was. The original CT scan showed the extent of his serious injury but it was ignored as providers made prejudicial comments such as, “Too bad, there’s no insurance-there’s no insurance when alcohol is involved, you know.” and “We expected that-he’s a rig worker.” The concerns I had of his deteriorating condition fell on deaf ears.
The impact of this experience
This experience left me feeling guilty that I didn’t do more to get the providers to hear my concerns, it left me feeling betrayed by my peers (I’m a nurse), it left our whole family feeling distrustful of the healthcare system, it has left us traumatized for life as there is no greater pain in the world than the death of your child. This experience taught us that you don’t have to be a visible minority, you don’t have to be from a marginalized community of people (it is much more frequent in both) to be the recipient of care based on the providers personal or cognitive bias.
Solutions to prevent harm:
- Providers, be aware of your cognitive bias and guard against it when providing care. You can’t fix what you don’t acknowledge.
- Take the time to review test results of your patients. The admission CT scan clearly showed Vance’s serious head injuries-it was certainly more than “just a concussion.”
- Listen to the concerns of the loved one at the bedside. They know that person best. Never, ever discount the concerns of a mother.
- Families and/or patients ask to see, or ask for, the results of tests-don’t assume the people providing care to you or your loved one has reviewed them. If they have to go over them with you, you know they have seen them.
- Providers, ask the person sitting at the bedside how they find the patient today and then LISTEN to what they have to say. If only one provider had asked me that question and then really listened to the concerns I had, then communicated that to the physician, perhaps Vance would have received the interventions he needed for increased intracranial pressure.
- Ensure the appropriate handover in care takes place. Patients/family ask who is taking over the care of yourself or your loved one. This will ensure the patient isn’t left unattended by a specialist like Vance was.
The above does not tell of the lack of support by a seasoned nurse when a young nurse asked for her opinion of Vance’s symptoms, it doesn’t tell of the lack of support by the organization for that young nurse who left the profession and we all know we need every provider we have. The above does not take into account the lack of accountability of the organization, it doesn’t tell of the lack of sincere apology by the organization, which caused second harm. Neither does it show the financial and emotional burden of the family left behind. All this is compound or complex harm which started with the first harm to Vance. So yes, there is much more to healthcare harm than physical harm…….