The comfort of a little dog in her hospital bed, thanks to a compassionate blind eye turned by her nurses, meant the world to Jeri-Joann Lyddiatt.
Jeri-Joann, or J-J to almost everyone who knew her in her hometown of Ingersoll, Ontario, died of ovarian cancer in June, 2011, at the age of 37. Born with a mild learning disability, she functioned normally in life in most ways – she had a full-time job, she drove cars, she was devoted to her dog Callie and her horse Bentley, she responded to regular everyday conversation like everyone else.
“It was only if you got into deep conversations with her or asked her to figure out something new without showing her how to do it that you would kind of lose her,” says J-J’s mother Anne Lyddiatt. “She would just carry on and ignore what you asked her to do or stop participating in the conversation and so that could create problems and misunderstandings. She knew this herself which was why she wanted me to make all the decisions around her health care. Plus as I’d been a nurse she figured this was more or less my ‘job’.”
An active health care advocate and volunteer, Anne is retired from a career including VON Canada and many years as a nurse educator and she’s no shrinking violet when it comes to speaking up, or acting decisively. She’d been doing it in many areas and situations on behalf of her adopted daughter for J-J’s entire life.
Anne is quick to heap praise on the big-hearted nursing staff who encouraged her to smuggle in J-J’s dog Callie on those daily hospital visits the last year of her life. But she also doesn’t hesitate to question some of the quick assumptions and poor communication skills displayed by other doctors and nurses charged with her care.
J-J’s health troubles began in 2008, when she had a large uterine fibroid removed and underwent a hysterectomy. Two years later, she told her mother that again something wasn’t right in her belly. Anne could feel a new large mass in her daughter’s abdomen and from her nursing background knew what that likely meant.
Investigation was done immediately and J-J had surgery two days later. While waiting for the surgery to be completed Anne did her best to prepare J-J’s totally unsuspecting sister for the probable diagnosis. Surgery did confirm an aggressive ovarian cancer and after six weeks J-J was booked for four sessions of very strong chemotherapy.
From the outset, J-J’s attitude was that she was going to get better. She had always had an aversion to hospitals and an absolute phobia when it came to needles so she wasn’t going to be sick or in hospital for one more minute than absolutely necessary.
“There were no ifs, ands or buts, the chemo was a cure and she would go back to work and to her life and that was all there was to it,” Anne recalls. “I knew that was not the case but I supported her, as did her sister, because that was the best we could do for her.”
With one exception, her assigned medical team at the cancer clinic knew about J-J’s view of things, as well as her deference to her mother on most matters, and accepted that state of affairs. It was only towards the end of her illness that a new oncologist at the clinic openly questioned why J-J, as an adult, wasn’t making her own decisions on care – a confrontation that deeply troubled both mother and daughter.
On another occasion, J-J had to be admitted to the local hospital for a 24-hour period for hydration. Before her mother could get there to explain things, a doctor other than the Lyddiatt family physician made rounds and inadvertently sent J-J into a sobbing panic attack.
“Apparently, he had come into the room and again, you know, she was an adult, he figured that she was making the decisions and he read from her chart the diagnosis that she was a terminal patient and dying and this was what they were doing. He read that to her. Well, she was needless to say just beside herself.”
It was only after Anne confronted that doctor and demanded he make things right that he re-entered J-J’s room, apologizing, and assuring her he had misread her chart. That same doctor went on to deliver particularly compassionate treatment for her daughter when she went in for palliative care the last four days of her life, Anne says.
“One of the things that is really crucial in healthcare is to always have the perspective, whether you call them patients, clients, consumers or citizens - whatever your term is, to have their perspective and viewpoint on things,” Anne says. “Because it’s often very different from the provider perspective and you really need to have both of them before you move anything forward.”
Anne cites another troubling experience with her daughter’s care over Christmas 2010. This was soon after she’d emerged from the second round of chemotherapy and also a debilitating bout of C. difficile. Round three of chemo was looming, and J-J again had vomiting and diarrhea, but she desperately wanted to spend Christmas at home. She loved Christmas. Much of December 24 was spent as an out-patient in the cancer clinic receiving intravenous and meds to get her feeling better and well enough to be home. By late afternoon it was decided she could be home but on IV therapy
A home care nurse came to the Lyddiatt residence late the evening of Dec. 24th to set up an IV. Brusque and in a hurry, she had no time for a mother’s explanations about her daughter’s needle phobia and defiantly sunny outlook regarding cancer. The nurse just wanted to get the call finished.
Unfortunately, the intravenous never did run properly and J-J wasn’t getting the fluids she needed and so she had to be readmitted to hospital on Christmas Eve.
She was kept in hospital another 12 days and when she came out her oncologist had decided there was no way she could survive another round of chemotherapy. The cancer appeared to have spread to her bones and to her brain, she suffered a pathological fracture of her shoulder soon after, and her family just hunkered down around her, at home and finally in palliative care, until she passed away.
Anne says she learned a lot from the experience of navigating a health system where she’d spent most of her time as the doer, rather than the receiver. She’s learned a lot as well from her work with Patients for Patient Safety Canada.
“I’ve certainly learned that some terrible, terrible things can happen, terrible adverse events,” she says. “I’ve also learned some good things can happen and I think we need to concentrate and work more on having more of the good things happen. I just find that the group that’s involved are really committed to this and work hard and to me it’s something that just needs to be done.”