On December 19, 2013 the Health Quality Council of Alberta publicly released the Continuity of Patient Care Study. The study investigated the journey of Greg Price, our son and brother, as he sought care from Alberta’s health care “system.” Many gaps were identified, all cost Greg valuable life-draining time as testicular cancer rapidly developed in his abdomen, gradually choking off his blood supply, putting him in serious pain and raising his blood pressure. While Greg initially sought treatment from the Primary Care Network (local doctors and clinics) he was operated on in an Alberta Health Services (government facilities) hospital, by a surgeon sharing office space in the Southern Alberta Urology Centre. Ultimately he died not of the cancer, but of a blood clot that moved to his lungs, choking the life out of him in our home. Less than 18 hours before (and after trying to contact the surgeon and learning that his office was closed on the Friday, before a 3 day long weekend) Greg had been taken back to the same hospital to be checked for this very risk.
The Continuity of Patient Care Study is a public study, done on the area of the health system that the HQCA has the mandate to investigate, which is the non-government facilities and operations. Alberta Health Services also did a review, which was not and is not public, and while we have been told of some very broad adjustments to practices that came out of it, we have also been told we are not allowed to hear specific answers even to our most general questions.
We were part of the press conference a year ago when the Continuity of Patient Care Study was released, and as Greg’s family, we have been working to try and see some positive change come out of this tragic loss. Our goal has been to see Safe, Continuous, Collaborative, Patient Centred care for all Albertans. In the 12 months that have followed, we have been part of presentations to different groups of health care professionals, locally and nationally. We have taken part in the Alberta Medical Association’s representative forum and a Results Based Budgeting session with Alberta Health. We have presented (along with Dr. Flemons, HQCA lead investigator for the report) to national patient safety conferences, and most recently to Health Quality Transformation 2014 For Health Quality Ontario.
At every one of these sessions, we have people come up to us and tell us how moved they are by what they heard, and how they believe it will affect how they do their work in the future. Many times, people will share their experiences with us often saying that “they were lucky” that someone took charge and bridged the gaps in care. It continues to amaze and sadden us, that even these professionals believe that they had to “be lucky” to survive the disjointed and disconnected treatment the “system” provided.
We also have met and learned from tremendous people, doing great work as individuals, and we have seen pockets of wonderful care being delivered by groups of people who really are providing patient centered care. When we ask about holding them up as examples that we can celebrate for their quality of care, they decline fearing serious negative outcomes for their patients and themselves.
We have also heard from other families with terrible and heart wrenching stories of their own. People who cannot understand how their loved ones can be treated so badly here in Alberta. People who were not treated with common decency or respect and certainly did not experience “patient centered care.”
Following the report’s release, Minister Horne asked publicly what the main stakeholders in Alberta’s health delivery system were going to do to respond to the recommendations in the report. The Alberta Medical Association discussed and debated their position and passed some resolutions in support of some of the work needed out of the recommendations and signalled to the government and other stakeholders, their willingness to work with them on others but real action has been very limited. The College of Physicians and Surgeons examined the recommendations and wrote to Minister Horne explaining how their view of how the recommendations didn’t fit with their view of the different doctors’ roles and where it could be considered, how difficult it would be to implement those recommendations.
As a family we thought there would be a few, very important and fairly simple, actions that would result from the report.
The first is the implementation of a policy at all Alberta Health Services Hospitals, and across the network of primary care clinics, that would welcome, not prohibit, a family member or a friend chosen by the patient, to accompany them throughout their assessment and treatment process.
I, Greg’s Father had been physically prevented from being with Greg when he was examined in Emergency the last time before his death. An examination that did not utilize all available methods of determining whether a blood clot was present. We have had no evidence that this policy has been implemented and indeed, personal experience recently proves otherwise. Family members often are not allowed to accompany the patient.
The second is a system put in place to ensure that either the patient’s own doctor, or someone the patient and their doctor both agrees is qualified, is available for the patient to contact in the event of serious health concerns, 24 hours a day 7 days a week.
We know that this also has not happened. Dr. Theman of the CPSA discussed the topic in “Trevor’s Take On… Losing the Public’s Trust and our right to Self-Regulate” One might ask why this continues to be a problem. It seems so basic. Some doctors and some surgeons do insure this is in place but not all and certainly too many do not. It is a dangerous contrast that on one hand, a doctor sees themselves as the only person capable of making the decisions on the care of the patient, and yet refuses to insure appropriate coverage with the patient except during those hours they choose to be at work. The rest of the time their answering phone message (or the post-surgery discharge instructions from the hospital) says to “call Health Link or go to Emergency”. Good collaborative practices would eliminate this critical gap.
It has been 12 months, three Premiers and two Ministers of Health since the release of this report. The province it is said is “under new management”. We look forward to a dramatic change in the “command and control management culture” and the curtains of secrecy surrounding the various silos that have been perpetuated in the past.
One foundational piece that is currently an opportunity for innovation and improvement is the electronic health record system, long talked about with little to show for it except politically opportunistic individual decisions that were made and cost hundreds of millions of taxpayer’s dollars without moving on the path toward a fully integrated universal system at all. We are pleased that Minister Mandel is looking into all of this and we hope that the HQCA recommendations are followed and a system that provides meaningful access to patients to both the information and the care process itself, as well as all of the patient’s care givers is established. It is also foundational to updating Alberta’s system to a stage that reflects the innovative and entrepreneurial spirit of other parts of the economy.
The time for real action toward a true patient centred vision is long past. Alberta is behind and should not be. There are great people and wonderful work being done here, quietly and purposefully “under the radar”. We must celebrate the great work, and hold those accountable who do not and deal with them in a way that causes prompt change in their behaviour making Alberta’s health care delivery system, safe, continuous, collaborative and patient centred.
Greg Price’s family, 12 months later
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