Chris Cox didn't feel her toe nail come off. It was only when she took her sandals off hours later that she saw her nail was gone. That's when she and husband Peter knew something was seriously wrong.
That incident was part of a decades-long journey through health care that convinced Peter the system has to change.
"Chris's story is more common than most want to acknowledge,” says Peter. “It is a story of failure to intervene at the appropriate time, which resulted in personal suffering but also a great deal of cost to the health care system that could have been avoided with good primary care."
He is also concerned Canadian doctors and nurses are working under conditions of stress and burnout with many choosing to leave the profession.
His message to them?
"You have to believe the system can be changed. Both from inside and outside. Keep fighting because without that, we are not going to make it better. Just accepting the situation as it is and trying to struggle on is not enough."
A former Vice-President, Finance and company director, Peter witnessed inefficient organizations struggle for long periods of time. He's also helped them address the root causes of crisis, to become efficient organizations supporting their front line. That's why he's joined Patients for Patient Safety.
Patients for Patient Safety Canada is a patient led program of the Canadian Patient Safety Institute. Patients for Patient Safety Canada works to ensure that healthcare organizations and systems include the patient and family perspective when making decisions and planning safety and quality improvement initiatives.
"Every organization faces a whole raft of different complex issues. I can sit on the side and look at things superficially and snipe, 'These guys didn’t know what they were doing. Look at what happened to Chris.' To understand what really created those situations is far more difficult," says Peter.
What happened to his wife Chris started in the mid-1980s with surgery to remove a cyst on her thyroid. Chris was given medication and told she’d need to take it daily for the rest of her life. Six months later the doctor's office asked Chris to come in for a blood test. She declined, saying she felt fine.
When she tore her toenail off in 1997, doctors discovered she was hyperthyroid, despite taking medication for hypothyroid. She’d developed diabetes and diabetic neuropathy. The nerves in her legs and feet were dead, explaining why she didn’t feel the toenail coming off.
It was then the Cox’s learned that patients with thyroid condition should be tested every six months. The doctor hadn't explained the risk of not taking these tests.
Again, Chris dutifully took her new medication. But in 1999, she developed mild swelling and a prickling sensation in her foot. Her G.P. was no longer in practice, so she consulted an endocrinologist, who described the new symptoms as a secondary condition of diabetic neuropathy. He denied Chris' request for a foot x-ray. Soon after, Chris developed diabetic ulcers, went to the ER and was treated with antibiotics. Still no x-ray. The ulcers returned, along with a prescription for more antibiotics.
A diabetic clinic nurse urged Chris to go the E.R. at a nearby teaching hospital. There, her foot was finally x-rayed. An infectious disease specialist diagnosed Charcot Foot, a degenerative bone disease that can lead to amputation.
Uninformed of the risk, Chris exacerbated the condition by walking on her foot, oblivious to the pain others would feel. Eighteen months later her toe was amputated when infection set in. Then in 2008, Chris' foot was amputated.
Chris adapted to her amputation and remained upbeat and cheerful until mid 2011 when she grew confused. She was even unable to remember where the bathroom was at home. Then she began hallucinating. The G.P. said it was either Alzheimer's, a mini stroke or a urinary tract infection (UTI). She was referred to a neurologist.
"Her endocrinologist, her nephrologist, a walk-in clinic doctor — they all had the same reaction,” said Peter. “Yet I discovered that 80 per cent of women Chris' age who develop sudden dementia-like symptoms have U.T.I."
She was hospitalized, treated with antibiotics and got better. She came home. A few days later Chris had severe abdominal pain, lost coordination and fell. Back to the E.R. More tests. An M.R.I. showed a mini stroke. Chris was admitted. She died ten days later, on the week of her 75th birthday.
It was a European relative of Peter's who pointed out that people of Chris' age with chronic conditions like diabetes are susceptible to UTIs, then to sepsis. Chris had been seen by eight different doctors. No one had tested for, or considered sepsis.
Peter saw Chris' nephrologist, who examined the records. Yes, Chris had likely died of sepsis. There were anomalies in her urine test; her blood pressure dropped about 20 per cent. He talked with Peter for more than an hour, explained how the system works, why this probably fell between the cracks and admitted that he could have done more.
"Saying, 'I’ve learned something from this,' was much better than an apology," says Peter.
Here are the changes Peter would like to see:
Involve the patient in care. Help patients understand their condition and how to manage it. Do it one step at a time. Explain the fundamentals. Chris wasn’t properly informed of the importance of six month testing following thyroid surgery, the importance of keeping off of her Charcot Foot, nor the relationship between her chronic condition, U.T.I. and sepsis.
People with chronic conditions need a primary care physician. Once identified with a set of chronic conditions, patients need primary care providers with specific knowledge, who can help avoid the setbacks Chris experienced — hospitalizations for the Charcot foot, the toe amputation, possibly even for the U.T.I.
Protocol to capture and learn from mistakes. Peter asked Chris’s orthopaedic surgeon to call the physicians who missed the Charcot Foot. Not to criticize, but to inform future diagnoses. The surgeon, however, said such a call would be considered professionally unacceptable and regarded as criticism by another doctor.
"Once there's a mistake, the health care system should have a protocol in place to ensure they learn from the mistake and don't repeat it,” says Peter.
“All doctors, no matter how brilliant they are, will make mistakes," says Peter. "In business, people want to be told of mistakes so they can do better. We should be able to do that in the medical profession, too."
Peter’s challenges fuel the importance of the message, ASK.LISTEN.TALK. “Good healthcare starts with good communication”.