This shining example is not without a dim spot. In 2008, the Mayo Clinic experienced a loss of $840 million on Medicare. Financial losses seem to be inherent in publicly funded health care systems where payments never cover the actual cost of health care services. A pattern of billion dollar deficits is visible in this type of system in countries across the globe including the United Kingdom, Australia, France and Germany. 

When it became apparent that Obama’s health care reform would expand an unsustainable Medicare system, the Mayo Clinic started its own type of reform. In January 2010, it began a two-year pilot project at its family medical clinic located in Glendale near Phoenix, Arizona. The clinic has stopped accepting medicare payment for primary care office visits thereby requiring patients to pay cash to see their doctors.

Here in Canada, patients are prohibited from directly paying their doctors for services covered under our Medicare system. Canadian Medicare now consumes close to half of our provincial and territorial budgets. Government efforts to control both costs and public expectations have led them to alternate between funding and service cuts and temporary injections of money. Throwing more money into a broken system is wasteful. It’s time for our politicians to be truthful and admit that government cannot provide for all of the health care needs of all of the people all of the time. It’s also time for Canadian patients and their doctors to embrace this truth and start conducting their own pilot project.

Our provincial and territorial governments continue to increase spending in areas with the highest level of public discontent otherwise known as “priority areas”. However, this only leads to funding cuts in other areas, decreased services, and growing budget deficits. It is not problem-solving but rather problem-shifting. This process does not provide for better alternatives it only serves to distract us from exploring them.

Here is what we find as we begin to pay attention to the spending habits of those in charge of our health care dollars.

In October 2009 the Toronto Star featured an article revealing the Ontario Ministry of Health’s practice of sidestepping government guidelines regarding the pay scale of civil servants. According to the article a number of exceedingly high civil servant salaries are hidden in the budgets of hospitals not employing them. The government claims it is a long time practice used to help attract talented people to the government sector. It is understandable that higher salaries may be needed to attract talented individuals who would otherwise receive pay-for-performance incentives found in the private sector. What is troublesome is the hide-and-seek mentality of the Ministry of Health regarding the spending of taxpayers’ health care dollars. Two weeks following the publishing of the article Premier Dalton McGuinty stated the practice would be changing.

Alberta released its 2010 provincial budget on February 9th. The budget absorbs the 1.3 billion dollar deficit of Alberta Health Services and allocates billons more in health care spending for “priority areas”. Health care spending in Alberta will account for roughly 44% of their provincial expenditures in 2010. Writing off this deficit helps to further hide the problems of the health care system and silence the allegations of government mismanagement. 

It seems as though our health care dollars are buying the same old problems instead of new solutions.

This is a familiar story of yet another Canadian politician leading a government-run health care system whose failings they will never experience. Our politicians continue to shape the government health policies and legislation controlling access to what they deem to be “medically necessary” hospital and physician services. As it is illegal for Canadian citizens to pay for these services in Canada, our only option is to wait on a list or leave the country. Many Canadian patients are forced to leave Canada’s single-payer, government-run health care system to seek the medical care they so desperately need.

In cases involving our politicians the faultfinding is not with their seeking the best medical care for their medical conditions in another country, but in upholding a system in their own country whereby the government is the gatekeeper of its citizens’ health care. It may be easier for some politicians to justify leaving the country rather than jumping the queues within it. Williams, like many before him, is exercising an individual freedom of choice in health care decisions. Perhaps we should encourage him to fight for the rights that would enable his fellow citizens to enjoy this same freedom within their own country. 

During his February 4th, 2010 commentary on CBC television’s The National, Rex Murphy stated that in Williams’ case “Politics should stop at the edge of the operating table.” This raises another important question – Isn’t this a privilege that should be extended to all Canadians?

In 2005, Rhonda Nixon entered the hospital for a diagnostic procedure that, if all went well, would have her back on her feet with little inconvenience. When things did not go well, Rhonda found herself in the middle of a medical misadventure with little information about what had caused the complications. Following life-threatening adverse events and a year of misinformation from her health care providers, Rhonda felt she had no choice but to search for her own answers, information and resources.

It has been a difficult path of discovery and healing, one that Nixon would like to help other people avoid if possible. After her recovery she realized “There had to be a better way to work with and communicate with health care professionals before, during and after a stay in the hospital.” Her personal experiences in the health care system have led to a deep interest in the issues of patient safety, disclosure of adverse events and errors in health care.

Nixon decided to provide others with information that would help them avoid some of the same situations that lead to her medical ordeal. In November 2009, she organized “The Empowered Patient Conference: Including the Patient in Patient Safety” in Nanaimo, British Columbia to highlight Canadian Patient Safety Week. The one-day conference focused on creating a greater awareness of patient safety issues and providing participants with the information and knowledge needed to make them better advocates. With minimal pre-conference media attention, 175 people attended the event to listen and learn from a variety of speakers including two special keynote speakers from the United States. “The systems may be different but the issues surrounding patient safety are the same,” says Nixon who first contacted Helen Haskell, Founder and President of Mothers Against Medical Error and Dr. Julia Hallisy, Founder and Author of The Empowered Patient. The two women, who co-founded The Empowered Patient Coalition work towards improving patient safety by providing people with information and resources for improving their medical experiences.

Conference participants found the event provided them with valuable information and indicated their desire for Nixon to hold similar events in the future. “(It) Gave hope for change and better health options. A good rounded representation of medical and non-medical speakers,” said one of the attendees. For Nixon, the conference shows that patients and health care providers need to work together toward positive outcomes. The Empowered Patient Conference has laid the groundwork for a new website and future workshops. Watch for upcoming articles on empowered patient Rhonda Nixon.

Remember the recent outcry when hockey players and their families jumped the queue for the H1N1 flu vaccine? I don’t understand why that caused such a stir because athletes, like politicians, always receive preferential treatment. Do you honestly think that any of them wait months on a list for an MRI or surgery? 

How can you be considered a queue-jumper if you are never really in the queue to begin with? In 2007 former prime minister Jean Chretien discussed his medical symptoms while playing a round of golf with a Cardiologist. He received testing the next day that revealed arterial blockage. Media reported that a cardiologist then requested emergency quadruple heart bypass surgery for the following day. This swift access to testing and surgery helped prevent heart damage from occurring. The Montreal Heart Institute denies that Chretien received any special treatment indicating that all of their patients receive the same standard of care. Oh, really? How many other patients are able to schedule their emergency surgery? On December 11, 2007 Chretien appeared on the CBC television show The Hour with George Stroumboulopoulos.

In the first two minutes of the interview we learn that after receiving the results of his tests Chretien was told that he would need surgery at some point in the future. His response was that he’d like to have it right away and they agreed to perform it the next morning. When asked why he didn’t have to wait on a list like everybody else he attributes it to luck. The truth is that luck has very little to do with it.

While on the campaign trail in 2006, the media reported that New Democratic Party (NDP) leader Jack Layton received a hernia operation in the 1990′s at the Shouldice hospital, a private facility in Toronto. An interesting choice for such a fierce defender of the public health care system. Then again, if labour unions helped found your political party then I suppose you are beholden to them politically not personally.    

The truth is that universal health care and its queues do not provide each of us with equal access when it comes to caring for our health. In a 2005 judgment, the Supreme Court of Canada confirmed that “Access to a waiting list is not access to care”. The shameful part is that politicians continue to shape our health policy and promote a public health care system whose shortcomings they will never experience.

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…

The Health Sciences Centre in Winnipeg, Manitoba tried to discharge Monty Vann two days after the surgery for removing his brain tumor. Vann, not feeling well enough to be released, fought to remain in hospital for another three days. Only five days after his brain surgery he finally agreed to the hospital’s wish to discharge him. While on his way home Vann suffered a stroke. He is now in hospital where he remains unresponsive.

I am sorry to hear about yet another case in which there will likely be no accountability for the events. I’ve talked about the search for accountability in our health care system in a previous post. Vann’s case is not unique but rather commonplace in our Canadian health care system. Things will only begin to change when the patient voice is heard.

Are you ready to have your say?