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Below is an article on lack of disclosure involving a patient in the Canadian healthcare system. Though the Canadian healthcare system has many differences with American healthcare, the story below and the cultural issues covered are a match with American healthcare. Sorry Works! has many supporters in Canada, and disclosure is a hot topic north of the border, but as the article illustrates we still have a long way to go...north and south of the border.
The Daily News (Nanaimo)
Thursday, November 29, 2007
'Routine' surgery causes injury;
A Parksville woman demanded answers, and was shocked at what she found
By Paul Walton
There is no such thing as "minor," "routine" or "risk-free" surgery. Ask Rhonda Nixon. In June, the Parksville woman went into Nanaimo Regional General Hospital for a surgical procedure that -- if it went well -- would have her back on her feet with little inconvenience. But it didn't go well. Nixon, 41 years old and with two teenage boys, ended up in the NRGH intensive care unit for 10 days, and it was another 20 days before she left the hospital.
It was a year before Nixon was well enough to return to work. And it was only then that she learned details about what went wrong in her surgery. Medical staff admitted to what in medical jargon is an "adverse event" -- some even saying they were "sick about what happened" -- but little more.
It would be nearly a year before she learned they had perforated a bile duct, considered one of the worst complications arising from the type of procedure Nixon underwent.
"Nobody ever explained it to me, in the hospital or out of the hospital, the symptoms I was having, nobody explained anything to me," said Nixon.
Finding out exactly what did happen took Nixon and her family through a maze of bureaucracy within the Vancouver Island Health Authority. And while Nixon navigated her way in and out of that labyrinth, she now wants others to pick up the thread she has left in the name of patient safety.
"We never faulted the medical professionals for the adverse event that I experienced," she said. "It is my belief that when an adverse event occurs, the patient and their family are entitled to full disclosure of the details so that they can make informed decisions about their immediate, ongoing and future care." Several weeks after Nixon went home to recover, a comment from a nurse triggered her initial curiosity.
"She was the first person to tell me that I was a walking miracle. Nobody had ever explained my complications to me. I began wondering what had happened."
In March 2007 she returned to work, and decided to get all her medical records from the Vancouver Island Health Authority. She asked for "all medical reports and investigations, notes, consent releases and any other documents related to my care not specifically mentioned in this request."
When she received a pile of paper about an inch thick, Nixon knew there was much more.
"(In hospital) I had two binders, they always had to take them with me wherever I went," she said. "I knew this couldn't be everything."
Though VIHA later insisted the first disclosure included everything, they later told Nixon that due to a staff shortage they were unable to find and process everything related to her care. She recalls how she was told the package was too large to be mailed. It arrived at the end of April 2006.
"Then I started really wondering what happened to me," she said
A shocked Nixon began to realize that her condition while in ICU was nearly fatal; something that neither she nor her husband were told, despite asking at various times for details about her condition.
"Then I started to realize the magnitude of what happened."
Her concern turned to other medical professionals who later treated her, who would have also been unaware of the exact nature or cause of her ill health. Without that crucial knowledge, said Nixon, her care was jeopardized, and other doctors and nurses put at risk of compounding the original error.
"Many of these medical professionals knew an adverse event had occurred, but allowed me to get well without knowing what happened," said Nixon.
Nixon also wanted to obtain VIHA's consent policy, and that request resulted in her getting a call from health authority's director of risk management. Nixon was given his name, and though she did not ask him to call, he phoned a few days later and left a message.
"I had no idea why he would be calling me. I was very concerned."
She later returned his call, and her concern increased still more.
"He said he'd personally read all my charts," she said.
He then offered to meet her and her husband in person, and he met them at their Parksville home on April 19.
"He arrived thinking he was going to speak to us about informed consent," said Nixon.
Instead she presented him with a banker's box filled with her medical records related to the June 2005 surgical error. During the five-hour meeting, Nixon and her husband made it very clear they wanted one thing to emerge from the investigation into their seven complaints and 34 concerns: To uncover details so that her experience can be used to instruct others about handling adverse events.
"I think something good can come out of this one medical experience, a lot of people can learn from it," she said. "I want them to be educated on how to react when an adverse event occurs."
Nixon made it clear that she had no intention of suing VIHA, but only wanted to find out what happened to her.
In the months and weeks that followed that meeting, Nixon got no letter acknowledging her complaint, no follow ups or information on the investigation.
"The replies I received were vague, I was not informed about how my complaint was being handled or who was handling it."
She asked who was doing the investigation and was told it was a consultant whom she never talked with. She was also never told who it was or given their qualifications. Nixon also tried to determine if the investigation was being done under section 51 of the Evidence Act. She was told at one point it was not, but that the investigation was a "review of systems."
When the risk manager called her in August to report the findings, Nixon exploded. He said the investigation -- under section 51 of the Evidence Act -- didn't find any evidence of negligence. But Nixon never alleged or mentioned negligence in her complaint.
"Do you mean to tell me you've spent four months investigating something I wasn't even complaining about?" she yelled.
"I was devastated to know they'd spent all this time investigating something I never complained about."
In the days following she and her husband asked for a written acknowledgement of that finding. They also asked for VIHA's complaint guidelines, and a root cause analysis study. Neither was sent.
Deeply disappointed, Nixon wanted to go to the top and tried to reach VIHA CEO Howard Waldner, without success. She did meet with senior executives from VIHA, and she left the meeting still feeling frustrated they still didn't understand her objective: "I have provided you (VIHA) a case study, and I've done all the work for you."
She said: "I feel they really do want to make a difference, but the system is broken. Where do you start to fix something that is so broken?"
But Nixon said a patient safety movement is on and hopes VIHA will find a meaningful way to include patients in a new patient safety process.
With her experience of feeling failed by medical professionals and VIHA, Nixon is now convinced that patients must now work for their own rights.
She is healthy now, and VIHA admits that Nixon's experience leaves room for improvement. But they appear to show no interest in working with her as they seek to further patient safety.
They are willing to offer her a formal apology, but show no interest in assisting Nixon as she considers establishing a patient safety foundation.
PWalton@nanaimodailynews.com
250-729-4230
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The Daily News (Nanaimo)
Thursday, November 29, 2007
VIHA Investigation
A report from the Vancouver Island Health Authority "relating to the medical care and treatments of Mrs. Rhonda Nixon" recommends a formal apology.
The report also concludes that communication between medical staff at NRGH was inadequate, "leading to distrust and lack of confidence on the part of the (Nixon) family," states the report, prepared by Lesely Moss, executive director of quality and patient safety.
"There are multiple care concerns that occurred during RN's hospitalization that were less than satisfactory and effective communication surrounding these events did not occur," stated Moss.
She also concluded that the investigation was poorly handled.
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