Greg Price died at the age of 31. His death may have been preventable had he been diagnosed and treated earlier for testicular cancer. He was left alone to navigate the health system and follow up on referrals, while experiencing major delays and the absence of communication and information.
His journey through the health system, and untimely death, were the focus of a December 2013 Health Quality Council of Alberta (HQCA) study. The study highlights the need to ensure that test results and referrals are better communicated in Alberta to patients, and between health care providers. Alberta’s Minister of Health Fred Horne called Greg’s story an “an indictment of the health system” noting that “the system clearly failed this patient.”
Greg’s journey: falling through the cracks of the health system
Dave Price, Greg’s father, describes his son as selfless, saying that this may have put Greg at a disadvantage as a patient. Price says he often wonders if “had he been more selfish, rather than selfless, more aggressive than respectful, maybe things would have been different.”
Greg’s difficult journey through the health system is detailed extensively in the HQCA study and on his family’s website. Click here to see a full chronology. The following section provides an overview of the last months of his life.
During a routine physical exam at a primary care clinic, it was identified that there was thickening of a tube of Greg’s testicles. The physician made a note that Greg should return for an assessment if he experienced any changes, or follow up in a years’ time.
At his next encounter, nearly a year after that first visit, Greg visited the same primary care clinic, at which point it was decided that he should be referred to a general surgeon for further assessment. However, it took 3 months for this appointment to be scheduled, with no feedback to the referring physician or Greg on when he should expect to have an appointment, or how long it would take.
In the meantime Greg like 1 in 4 Canadians each year, visited a nearby walk-in clinic because of back pain. The physician he saw there ordered a number of tests which detected a large mass in his abdomen. Greg and this physician discussed a possible cancer diagnosis. Follow up tests, including an abdominal CT scan, marked as urgent, were ordered.
It took three weeks for the CT scan appointment to be completed. During this period, the physician who Greg saw at the walk in clinic left that practice, and Greg received no information about the CT scan results.
Clearly concerned, Greg phoned the walk-in clinic and was told the physician who ordered the tests no longer worked there. Greg was seen by another physician at the walk-in clinic who reviewed the tests, and sent a referral to a urologist for surgical consultation.
During this time Greg experienced increased back pain and high blood pressure, presumably caused by the mass in his abdomen. He was in pain and was regularly checking his own rising blood pressure at drug store blood pressure machines, becoming increasingly worried.
A week after the referral was made to the urologist, Greg had not heard back about an appointment so he phoned the walk-in clinic, which suggested he call the urologists’ office himself. When he did, there was a recorded message stating that the urologist was away for an extended period of time. There was no one to speak to at this office, and no way to leave a message. Greg relayed this information back to the walk-in clinic, who booked him in for a consultation with another urologist for a few days later.
At the urologist appointment, and a day before surgery, an urgent referral was made to an oncologist.
Within a few days, Greg had surgery to remove the testicle which was found to contain cancer, and upon returning home from this day surgery experienced swelling of his legs. Even though it was a Friday, the office of the urologist who performed the surgery was closed in advance of the Victoria Day long weekend, and Greg had no follow up instructions for what to do in the case of complications other than to go to an emergency department.
Greg’s family took him to the emergency department. He was sent home after being assessed by a physician and it was confirmed that he would be seen by an oncologist later that week. In the early morning hours following emergency department discharge, Greg collapsed at home due to a blood clot, a common post-surgical complication, and could not be resuscitated.
Making sense of Greg’s death
Greg’s untimely death was a shock to his family, friends and community. His funeral took place at a packed hall in his hometown of Acme, Alberta with over 600 people present. One characteristic comment across the eulogies was Greg’s tenacity.
His father proudly says “he excelled through an incredible level of commitment and focus.” Greg was trained as an engineer, worked as a pilot and had founded a company. He was also an accomplished athlete – playing baseball and basketball for the province of Alberta while in high school, and continuing to play recreationally until a few weeks before his passing.
This tenacity, which characterized Greg’s life, has been taken on by his family to identify and suggest health care system improvements that could have prevented his death.
The Health Quality Council of Alberta (HQCA) learned about Greg, and found that the major gaps in his care reflected survey responses from Albertans rating their patient experiences. Less than 50% of Albertans rated the coordination of their care by health care professionals as excellent in 2012, a figure unchanged since 2003. This is in spite of continuity of care being a major focus of Alberta’s Five Year Health Action plan, initiated in 2010.
The HQCA study includes in its introduction how Greg Price’s experience not only “reveals opportunities to improve Alberta’s health care system” but also underscores “that breakdowns in the system are not merely problems on paper – they affect real people.”
The study’s lead author and HQCA medical advisor Ward Flemons notes that the study doesn’t aim to lay blame on individual physicians, but rather on the system.
“While there is a tension between individual accountability for Greg’s care, and system accountability, if it was just about a few physicians there wouldn’t have been a need to do the study” Flemons says.
Trevor Theman, Registrar of the College of Physicians & Surgeons of Alberta (CPSA) says that there are various levels at which Greg Price’s story can be addressed. He notes that while the study focused on system level issues, when it is found that individual professional obligations and standards are not followed, the CPSA has the capacity to investigate and discipline physicians and “address the individual practice concerns around physicians’ practices” from whom Greg sought care.
A continuous, collaborative and patient centred health system: recommendations
The HQCA study included 13 recommendations, many of which focus on creating what Dave Price describes as a “vision for the health care system” –continuous, collaborative and coordinated patient centred care. This article focuses on the recommendations specific to continuity of care.
Greg experienced major gaps in communication. Recommendations highlight that better systems are needed to ensure that referrals, requests for appointments and urgent diagnostic test requests are dealt with in a timely manner.
Ed Brown, Chief Executive Officer of the Ontario Telemedicine Network says that current referral practices of “just sending a fax and having wishful thinking” are outmoded.
While Alberta has a province-wide electronic health record system, Netcare, not all physician practices have it in place. Netcare is designed to allow authorized users (such as clinicians) to see all prescription, lab results, diagnostic images and hospital discharge summaries for a patient in one place. The study recommends further investment in an eReferral system connected to Netcare which would standardize how referrals are sent, received and completed for all involved clinicians and patients.
This system would standardize the referral process for appointments and diagnostic scans by tracking the process steps from the time a referral is made, completed and results are available, and make this information viewable to patients and physicians.
Prioritizing urgent cases & establishing time commitments for time-sensitive conditions
While the possibility of a cancer had been discussed between Greg and the walk-in clinic physician, there were a number of delays in Greg receiving diagnostic tests and appointments with specialists.
The study suggests that “time-sensitive health conditions” receive priority by radiologists who review diagnostic test results, and radiologists should be allowed to order further diagnostic tests, as appropriate, and to directly refer patients to a specialist, rather than having to go back to the ordering physician, and then wait again for a referral. These referrals would include notification to the ordering physician, and would presumably cut down on waiting times between diagnostic tests and appointments.
Recommendations call on the Alberta Society of Radiologists, Alberta Health Services and the Alberta College of Physicians and Surgeons (CPSA) to develop policies and procedures to support these changes, and identify circumstances that would be considered ‘time sensitive’. Theman highlights that this could be a challenge to implement, saying defining time sensitive is “problematic and will have some push back as it is difficult to legislate and define clinical judgment.”
Physician commitment to patients: availability, after hours access & most responsible physician
Greg found himself without a constant physician contact, having seen multiple physicians at the primary care and walk in clinics, and waiting for referrals to multiple specialists. There was no one person who knew the full picture or was accountable for managing his care.
The study recommends that Alberta Health Services and CPSA revise bylaws to ensure that in cases where patients have a time sensitive health care condition, a ‘most responsible physician’ is identified and known amongst all physicians who provide care to this individual. The most responsible physician is accountable, and available to coordinate care, and respond to urgent requests for patients with time sensitive health conditions, or who have recently undergone treatment.
In addition to identifying a ‘most responsible physician’, recommendations identify the need for better monitoring and compliance with CPSA ‘After Hours Access to Care Standard’. This requires physicians to make specific arrangements for appropriate coverage when they are not available, such as providing patients with contact information for a physician on call.
The standard notes that it is not acceptable to just have a recorded message telling patients with an urgent concern to proceed to the nearest emergency department, and that practices need to have formal agreements in place with the organizations to whom they are directing patients after hours. This was highlighted in Greg’s case because he had just undergone a surgical procedure but was unable to contact the surgeon when he experienced complications.
A CPSA survey found that about 20% of Alberta physicians were not aware of this standard. A Canadian Medical Association Journal editorial published this week highlights that the issue of practice coverage is a challenging, but an essential professional obligation for physicians across Canada.
Theman said in a recent letter to CPSA members that “it’s not good enough to be ignorant of the Standards and it’s not acceptable not to have in place a system for after hours coverage of one’s practice”
Will the HQCA study improve continuity of care for Albertans?
In the weeks following the study’s release Alberta Health Services, CPSA and Alberta Medical Association issued statements in support of the recommendations. These organizations all committed to reviewing recommendations, and working towards their implementation.
Study recommendations, in particular around eReferral systems, require significant investments of dollars, and major cultural shifts to how physicians communicate and practice.
Ward Flemons believes however that “there is hope that this isn’t pie in the sky thinking and that there is the ability to do it, though it requires commitment and vision.”
Theman agrees, saying that “the recommendations related to physician practice have a good prospect of change” and that there is a willingness among physicians to improve systems of communication and practice.” He also highlights a sentiment among some physicians of the risk that “the public could lose trust in the profession’s ability to self-regulate unless many of the recommendations are addressed.”
Greg’s family has also been acknowledged as a driving force for improvement. Flemons says “while everyone wants change, they are truly committed and will do their best to hold people accountable.”