The untimely death of his wife Madeleine in March 2003 raised many questions about the quality of patient care and the accountability of health care providers within the Canadian health care system. Ed knew that he must do something to prevent others from experiencing similar medical tragedies. In 2004 he cashed in some retirement savings and created an information booklet containing Madeleine’s story and a poll to find out about the health care experiences of other Ottawa residents.

Two weeks prior to the mail out of his booklet, the results of “The Canadian Adverse Events Study: the incidence of adverse events among hospital patients in Canada” appeared in the May 25, 2004, issue of the Canadian Medical Association Journal. News of the study inspired Ed to pursue his health care poll and in early June the information was sent out to more than 250,000 homes in Ottawa. People soon began relaying their experiences with Canadian health care. Wishing to share this valuable information, Ed contacted the funding partners for the adverse events study. Both the Canadian Institute for Health Information (CIHI) and the Canadian Institutes of Health Research (CIHR) recommended contacting a new national agency called the Canadian Patient Safety Institute (CPSI). In November 2004 he met with the Director of Operations for CPSI and provided her with a summary of his poll results. He never heard from her again.

Patient Safety Groups
A year later, Ed discovered that the Winnipeg Regional Health Authority (WRHA) in Manitoba was collaborating with patients and their families to improve patient care and safety. He contacted their Chief Patient Safety Officer and asked if he could work with their organization. In May 2006 Ed travelled to Winnipeg and attended a meeting of the WRHA’s Patient Safety Advisory Council at which time he became an official satellite member of the group. He provided them with all of the data from his poll and collaborated with them to produce a presentation and poster outlining lessons learned from patient experiences in the health care system. The WRHA promoted Ed’s work by featuring him in their newsletter and on their website. Hoping to broaden the reach for delivering his message on patient safety, Ed also became a Patients for Patient Safety Champion through the World Health Organization’s World Alliance for Patient Safety and joined a newly formed patient group called Patients for Patient Safety Canada (PFPSC). His membership in these groups enabled him to participate in a few national patient safety conferences.

In February 2008 he sat on the steering committee of PFPSC and helped them develop a charter for the organization. Three months later the amicable relationship between Ed and the WRHA ended abruptly when they informed him that a restructuring of their Patient Advisory Council meant that he could no longer be a member. Ed was extremely disappointed but undeterred in his patient safety efforts. In September 2008 the CPSI, the funding body for PFPSC, invited him to speak at their Canadian Patient Safety Officer Course. One month later he received a call from PFPSC dismissing him from the group. In January 2009 he received an official letter outlining the reason for his expulsion. The letter makes reference to his speaking engagement and the message contained in his information booklet.

The Journey Continues
Ed’s journey from medical tragedy to patient safety resembles that of a roller coaster ride with many inclines and declines. Sometimes he is given opportunities to participate in the patient safety movement where his message is embraced and he feels like he is contributing to changes in our health care system. Other times his message is considered controversial and the opportunities for it to be heard quickly disappear. His experiences with government-funded patient safety groups have lead Ed to believe that many of them do not wish to address the performance issues of health care providers.

“Everything is blamed on the system like it’s some inanimate object,” he says, “but systems don’t run themselves. Every system has a human component.”  

Ed is now revisiting his plans for starting an organization dedicated to improving the accountability of health care providers and the quality of patient care in the Canadian health care system.

“My life’s goal is to see evidence of just one person having survived a medical tragedy as a result of something I contributed to,” says Ed.

You can contact Ed Mendoza by email at edrex1@sympatico.ca

Ed's favorite photo of his wife Madeleine

“I’d like to tell you about Madeleine and who she was as a person. Can I do that?” asked widower Ed Mendoza.

“Yes, tell me about her. I’d like to hear more about her,” I said.

And so begins the story of Madeleine Mendoza’s untimely death.

She enjoyed talking to everyone she met and was genuinely interested in what others had to say. People were immediately drawn to Madeleine’s caring nature and her desire to listen intently to their spoken words. Complete strangers felt at ease enough to share many details of their lives with her.

A summer pool party held at the apartment complex in which both Ed and Madeleine lived was the setting for their first meeting. Ed recalls an immediate attraction to her beautiful smile. It provided the first hint to the vibrant personality that he would come to love. While they talked that day by the pool his excitement continued to build as he learned that they shared similar values and beliefs. They soon began dating and married a year later. Their marriage contained all of the essentials of a happy union as they were best friends, lovers, and husband and wife. Laughter was a big part of their lives and a natural complement to Madeleine’s wonderful sense of humour. She and Ed always had fun together. They were a great team, trusted confidants and each other’s biggest supporters.

Ed never learned to drive so he always assumed the role of navigator when he and Madeleine made trips in the car. On one of their trips they were forced to visit the local hospital in Orangeville, Ontario after Madeleine experienced a flare up of the painful bowel disease diverticulitis. The results of a CT scan and its accompanying report recommended that she undergo bowel surgery for her diverticulitis. It also identified some ulcers in her colon that should be monitored.

After they returned home to Ottawa, the Mendozas visited Madeleine’s family doctor who provided a referral to a surgeon. The recommended surgery offered a chance for Madeleine to regain some of the quality of life lost to the years spent suffering from her bowel disease.

On January 6, 2003, Madeleine undergoes surgery for a bowel resection at an Ottawa hospital. In the weeks that follow she experiences severe pain and discomfort prompting three separate visits to the emergency department resulting in intermittent hospital stays. Madeleine’s condition continues to deteriorate. Her final trip to the hospital occurs on March 5. Madeleine is afraid she is going to die. Ed tries to reassure her. He spends days and nights at her bedside and is shocked by what he observes on the frontlines. He sees poor quality bedside monitoring and care as well as a lack of communication between all health care providers. During this hospital stay Ed learns that Madeleine’s surgeon has not shared the Orangeville hospital’s report with any other health care providers. With this report in hand he approaches the gastroenterologist who, at Ed’s insistence, agrees to perform a colonoscopy. The test reveals highly inflamed ulcers in Madeleine’s colon which the gastroenterologist says can be treated with antibiotics.

In the early morning of March 18, Ed is awakened by an alarming sound. It is his home telephone ringing loudly. He picks up the receiver and hears a nurse’s voice inform him that they are trying to resuscitate his wife. A wave of panic surges through his body as he tries to comprehend the magnitude of her message. He rushes to the hospital and finds the door to Madeleine’s room closed. His mind tells him what his heart already knows. He frantically pushes through the door to get to her bedside where he begins to sob while cradling her lifeless body.

The autopsy report provided by the hospital’s pathologist states the cause of her death as “Gastrointestinal ulcer, perforated”. Ed attributes Madeleine’s untimely death to the failure to provide a proper standard of care or what he refers to as health care neglect.

Twice yearly, on the anniversary of her burial and their wedding anniversary, Ed takes the 12 hour bus trip from Ottawa to Madeleine’s grave site located in her birthplace of Cochrane, Ontario. The rest of his time is devoted to another journey – trying to improve the quality of patient care in Canada.

To be continued…

Help From the Media
In June 2007 Leslie finds out that the medical chart audit promised by the Winnipeg Regional Health Authority (WRHA) two years earlier never happened. Realizing that her voice is beginning to fall on deaf ears she turns to the media. The Chief Patient Safety Officer for the health authority confirms the absence of an audit in an article appearing in the June 27 edition of the Winnipeg Free Press. According to the article, they abandoned the audit after discovering medical charting problems in areas beyond the emergency department. The article goes on to state that measures have been taken to address the problem. The absence of an audit becomes a public issue for the WRHA and a few days later its President and Chief Executive Officer agrees to conduct one.

New Apology Legislation
In November, Leslie attends another session of the Manitoba Legislature this time to offer her support for new apology legislation. Like many of its supporters, she hopes the new Apology Act will make it easier for those involved in medical errors to offer an apology to patients and their families as it would be inadmissible in a court of law.

The family of John Klassen eventually receives a public apology from the President and Chief Operating Officer of Concordia Hospital during his appearance on a local radio program. It comes after the two-year statute of limitations expires and there is no longer any legal standing for filing a statement of claim. Leslie approaches the apologetic executive about sponsoring the cost of a patient to attend a patient safety conference and he obliges. A real turning point in their communications occurs one evening when Leslie approaches an open microphone at a public forum held by the Manitoba Patient Safety Institute. “I thanked Henry Tessmann for listening to me and for caring enough about patients to sponsor just a patient. The next day I received an email from him thanking me,” says Leslie. She frequently communicates with Tessmann on issues of patient safety and believes this type of personal contact offers a more collaborative approach for implementing changes.

The Sacrifices  
Medical errors cost John Klassen his life. Four years after his death and due to the undying efforts of his daughter, the WRHA offers $20,000 in compensation to his widow. It is conditional upon the signing of a release from the estate. The Klassen family remains hopeful that all of the recommendations from the review of their father’s case will be fully implemented to help prevent the same medical mistakes from being repeated on future patients.

In October 2008 Leslie holds a candlelight vigil at the Manitoba Legislature during Canadian Patient Safety Week in remembrance of the lives lost to medical errors. In the same month Patients for Patient Safety Canada and its parent organization the Canadian Patient Safety Institute, an arm’s length government agency, break off relations with her. In a letter dated January 26, 2009, the group recommends she find a new venue for her voice stating “We recognize that you seek to represent the patient’s voice and encourage you to find a venue for your voice that aligns with the message you wish to share.”

Leslie Worthington is a determined, outspoken and fearless advocate for patient safety. She is the type of person the Canadian health care system often tries to silence. Leslie’s patient advocacy voice remains strong and her message is clear “I can’t bring my dad back, but if I can save one other life it’s worth it.” And she is not alone in her quest. The call for accountability in the Canadian health care system can be heard from patients and their family members from across our nation. Leslie’s journey makes us mindful of the sacrifices for making this patient advocacy voice heard; a voice whose call must be answered.  

Watch for upcoming articles on patient safety advocate Leslie Worthington. She can be contacted by email at: lesliecpa@shaw.ca

Note: Articles from the Winnipeg Free Press archives are available only through paid subscription thereby limiting the ability to provide direct links within this post. More information on Leslie’s story can be found in the following articles featured in the Winnipeg Free Press newspaper archives:

• College dismisses conflict allegations: ‘It’s doctors reviewing doctors’: complainant
  by David Kuxhaus, Thursday, March 2, 2006
• Woman seeks answers to why mom nearly died in hospital
  by Martin Cash, Saturday, August 12, 2006
• Dad dead; family wants answers: Outraged that hospital never did an audit
  by Jen Skerritt, Monday, June 25, 2007
• WRHA to audit medical errors
  by Jen Skerritt, Wednesday, June 27, 2007
• Say sorry without fear of legal action
  by Bruce Owen, Thursday, February 7, 2008

John’s first trip to the emergency department of Concordia Hospital occurs on October 21, 2003, ending with his discharge three days later. He returns to the emergency department on October 29 by ambulance, this time suffering from chest pains and shortness of breath. His family is present and daughter Leslie knows things are going terribly wrong. Someone gives him a drug, no one monitors his condition, and then his heart stops beating. John is resuscitated and transferred to another hospital where a stent is placed in his heart. He is then transferred to yet another hospital for a stay in the intensive care unit before returning to a ward at Concordia where he remains until his death.

The Call for Accountability
After retrieving and reviewing his medical records, Leslie calls for an investigation into her father’s case. The medical charting, or lack thereof, speaks volumes to the care management errors that sent John Klassen down a path of no return. More than six months after his death the Winnipeg Regional Health Authority (WRHA) provides Leslie with a section of their report. It is a copy of the preliminary findings and recommendations made by their Critical Clinical Occurrence Review Team. She never receives the full report but continues to communicate with the health authority regarding its findings. “I kept after them to make sure they were implementing the recommendations,” says Leslie. In the meantime, she explores other avenues for finding accountability. She contacts Manitoba’s Minister of Health. She meets with the Chief Medical Examiner for Manitoba Justice about holding an inquest into her father’s case. In a follow up letter he states that the case deals with the quality and standard of care which is outside of his jurisdiction and refers her back to the health authority. The WRHA claims that her concerns about physician conduct fall under the College of Physicians and Surgeons of Manitoba (CPSM). Leslie soon finds herself inside a circle of no blame.

In April 2005 she receives an update from the health authority on their progress with implementing some of the review team’s recommendations. The letter states that an audit is being planned to ensure staff adherence to the medical charting guidelines of the CPSM. During this time, Leslie is in contact with the college regarding her complaint against the emergency department physician who treated her father. The response from their Complaints Committee indicates that the physician, with the exception of his poor medical charting, is without fault. Leslie questions the potential for a conflict of interest as the committee’s letter is signed by a physician involved in her father’s case but the college dismisses her concerns.

Over the next six months her letter writing campaign extends to every Member of the Legislative Assembly in Manitoba with the hope that someone will address the questions and concerns about her father’s case and its larger implications for patient safety. One of the recipients is Jon Gerrard, both a medical doctor and MLA. In November 2005 Leslie attends a session of the Manitoba Legislature with Gerrard who questions the lack of accountability of the health care system in implementing the recommendations from the Klassen case review; especially since these recommendations address issues of patient safety.

To be continued…

Only a few days before, my husband gives his father a woven photo blanket of grandpa and his granddaughter. Lyall says it’s beautiful and a smile crosses his face. In his hand is a recordable greeting card which plays our daughter’s voice saying “I love you grandpa”. These small gifts contain a large dose of happiness just for him.

No more of Lyall’s music, especially his drumming. No more golfing, camping or watching old movies. No more wittiness, warm smiles or fuzzy wuzzy grandpa hugs and kisses. Only the memories we hold dear to our hearts and keep fresh in our minds.

The brevity of this story can only offer you a glimpse of life on the list for Lyall (Part I, Part II, Part III). I share these details with you to illustrate some of the problems with a government-run health care system and to remind you that it is the patients who bear the greatest cost for its failures. This story does not describe a unique situation, as waiting lists for specialists, diagnostic tests and surgeries are commonplace in the Canadian health care system, more so it attempts to provide some insight into what is truly lost in the numbers next to the life on the list.

We love you and miss you Lyall.

It’s now five weeks since Lyall’s biopsy and he is still waiting for an appointment with an Oncologist. We feel totally helpless. On route to the hospital my husband speaks to a resident over Lyall’s cell phone which he keeps in his hospital room. Grandpa always keeps us updated on the latest technology. My husband is stern with the resident saying that the number of weeks waiting for an appointment with the Oncologist is unacceptable. The resident says that he can understand our frustration and offers to inquire about an appointment date with the cancer centre. My husband asks for someone to call him back. No one calls but when we arrive at the hospital we find out from Lyall that he now has an appointment for the following week on November 10th.

The day finally arrives and after a terrible night Lyall is so ill that he must travel by ambulance to the Oncologist appointment which is two hours away. The hospital tells my husband that it is better for him to drive his father back to the hospital after the appointment as he may have to wait until 2:00 am for a return ride by ambulance. At the appointment the Oncologists inform Lyall that he is too weak for any kind of treatment for his esophageal cancer. They estimate the time remaining on his life to be one month. He wishes to spend his last days at home. The remainder of our trip is spent with family helping to fulfill Lyall’s wish of being at home.

Before we head back to Saskatchewan I have an opportunity to sit and talk with Lyall and say my tearful goodbye. He shares with me his fear that his granddaughter will not remember him. I promise him that I will not let that happen. I cry in the car on the drive to the airport as my aching heart knows that I will never see him again. Our daughter is too young to understand most of what is happening. My husband is returning to work for a few days. We all agree that my husband will make the next trip alone as grandpa doesn’t want his granddaughter to see him deteriorate further.

Lyall’s life remains on the waiting list to see an Oncologist. 

Meanwhile my husband and I look into options for getting an appointment with an Oncologist. To the best of our knowledge there are no Oncologists practicing outside of the government health care system in Canada and therefore the only option for a patient is to wait on a list or leave the country. My husband and I have left Canada for medical treatment in the past and hold this option as a beacon of hope. We contact an out-of-country clinic specializing in the treatment of esophageal cancer and find out that a pre-appointment record review must be completed before scheduling an appointment. While organizing Lyall’s test results we discover an upper gastrointestinal series (barium swallow) performed five months earlier in May 2009. We forward the medical records. Two days later we receive an email from the clinic with the following message:

“A specialist in the Department of Oncology, who reviewed your medical summary, made the following comments: “Based upon the medical summary you submitted, the specialist would encourage you to continue to receive care with your local physicians because **** Clinic does not have anything significant to add to your current treatment plan.”   

The written words stab our eyes and their meaning momentarily takes our breath away. It is too late.

We contact another out-of-country medical centre with an international reputation for the treatment of esophageal cancer. They tell us that Lyall must be discharged from the hospital before they will review his records.

All any of us can do now is wait.

Life continues on, as does the treatment for acid reflux, until August when Lyall’s rapid weight loss can no longer be ignored. He has lost about 25lbs over the last few months. During this time Lyall’s youngest son is busy planning for October wedding celebrations in two provinces.

On September 29th Lyall undergoes an endoscopy and biopsy. The procedure involves snaking a lighted flexible tube with a small camera through the esophagus and taking a tissue sample for analysis. He is determined to attend his son’s upcoming marriage. On October 3rd despite the paleness and gauntness and illness he is a proud father sitting at the wedding ceremony. He leaves the reception early to return to his hotel room and lie down.

We find out that he is not feeling well enough to attend the next celebration being held the following weekend and is staying home to wait for the results of his biopsy. My husband and I express our desire to travel to British Columbia to be near him and wife Sandra but they urge us to represent the family and attend the celebration down east. Lyall waits for the results of his biopsy and my husband calls him for a daily update. It is not until we are in the airport preparing to fly home from the most recent wedding celebration that we receive the news. The biopsy result is positive for cancer; esophageal cancer.

Lyall’s name is added to a waiting list for a CT scan to see if the cancer has spread. A week passes and my husband and I become frantic as he has no date for the CT scan. British Columbia has a number of private clinics offering CT and MRI scans. We ask him to consider leaving the waiting list and paying to have the scan done. We find out that a doctor’s referral is required before a scan can be purchased at a private clinic. Lyall mentions to his doctor that he might like to pay to have a scan done privately, but the doctor assures him that he is scheduled for October 19th which is now only a couple of days away. Lyall remains on the waiting list.

On the morning of October 19th as he and Sandra prepare to travel to the appointment they receive a call informing them that the CT scanner is broken and there is also not enough staff to operate it. The hospital will reschedule his appointment for the following week. Lyall’s youngest son hears the news and calls the hospital telling them that his father’s condition is becoming worse and he needs to have the scan sooner. They schedule him at another hospital and give him an appointment for two days later.

On October 21st Lyall finally gets a CT scan. The results are not good. He is told that the esophageal cancer has spread to his stomach and surrounding lymph nodes as well as two spots on his liver. He is also told that the cancer is in Stage IV, inoperable and terminal. Lyall’s name is on a waiting list for an Oncologist (cancer specialist).

My husband flies to British Columbia to visit his ailing father. We know the shortcomings of our health care system. My husband starts compiling Lyall’s medical records in preparation for leaving the Canadian health care system and its death-sentencing queues. I search the Internet and compile information on esophageal cancer, its treatment and top hospitals.

Lyall continues to wait on a list…

Murray was scheduled to have the same surgery on his right hip the following spring. A week before surgery, he was informed that the surgery would not be permitted for anyone over 55, regardless of whether the patient or Alberta Health paid for the procedure.

In October, 2005, Mr. Murray was able to have his hip surgery in Quebec, citing Chaoulli v. Quebec, which struck down a Quebec law forbidding the purchase of private health insurance on the grounds that it violated the Charter of Human Rights and Freedoms.

Read More

Then the runaround began. To get a CT scan, she would have to be referred by a specialist. She was sent to a general surgeon, who referred her to a gynecologist. Meanwhile, the clock was ticking. On October 16, a gynecologist told her he didn’t believe she had cancer.

A concerned neighbor’s son — a U.S. doctor — got her an appointment at St. Joseph Mercy Oakland in Pontiac, Mich. “He saw me, he looked at the report and said I know exactly what I want to do. The following Monday he performed the surgery.”

The surgeon removed a 35 centimetre tumour, along with her ovaries, appendix, fallopian tubes, uterus, cervix and 13 litres of fluid. According to the surgeon, if she had waited even two weeks more, she would have faced potential multiorgan failure, rendering her unstable for surgery.

After the surgery, DeVries said “I would like to see the situation rectified so [other patients] don’t go through this.”

Read More

Cancer survivor battles OHIP  [Canada.com]
Even huge tumour can’t secure care in Ontario [The Globe & Mail]