Where we aren't at Preventing Sudden Cardiac Arrest in Youth

Despite at least 8 on ice deaths in 9 years Hockey Canada’s Head of Safety, Todd Jackson told CBC that "We are at a point where we are delivering something we are very comfortable with"  when asked if his organization was doing enough to prepare for and respond to cardiac arrest.

In Ontario, OPHEA, the organization charged with setting guidelines for safe and healthy schools has given Arrhythmia Diseases a place of prominence in their   Sample Information Letter to Parents/Guardians and Medical Information Form   and provides a brief overview of Heart Arrhythmia Diseases  as Appendix “M” in their guidelines. Unfortunately Boards, Principals and Teachers are not mandated to follow these guidelines.  In my significant personal experience I have found Educators in Ontario to be largely unaware of all aspects of arrhythmia disease including common warning signs.

Legislatively no Canadian province has passed a bill targeted at preventing Sudden Cardiac Arrest in Youth, the #1 killer of young people at schools and at community sports venues. (At the time of writing a Private Members Bill is being drafted in Ontario. Thank you Christine Elliot and Dr. Kirsh) In the United States there are at least six states with legislation passed and six or more with legislation pending.

In this century alone at least 10,500 young Canadians have died suddenly of cardiac causes.  For the entirety of this century organizations such as The Canadian SADS Foundation (Sudden Arrhythmia Death Syndromes) have been promoting the warning signs of Heart Arrhythmia.  Paediatric Electrophysiologists  (physicians that specialize in treating electrical diseases of the heart) have provided the scientific rationale for the warning signs and endorsed the widespread dissemination of them.  Sadly awareness and prevention initiatives have gained zero traction in this country.  If the road to an effective national prevention strategy for sudden cardiac arrest in youth is 100 miles long Canadians have taken no more than one or two steps since the 1990’s. The investments (mostly non-monetary) required to reduce the 700 young person deaths each year have simply not been made, rarely even discussed.

In contrast, I sat at my desk, on a cold and drizzly October afternoon in 2009, and watched parents drag their children a kilometer or more down a busy roadway to line up outside in the rain for up to two hours to receive a vaccine for a strain of flu (H1N1) that despite its advanced billing ended up being relatively benign.  Health Canada estimates of the potential for between 2,000 and 8,000 flu related deaths in Canada that year vastly overestimated the reality of the 428 H1N1 deaths, mostly older adults with co-morbidities, reported in Health Canada’s final report on the pandemic.  The point I want to make is that with little to no evidence to back their play healthcare officials used their legal and moral authority to mobilize resources, spend significant public monies often by accessing emergency funds, require healthcare workers to put in overtime, mandate lower levels of government to respond immediately to demands for human resources and facility space.  In all it was an impressive, expensive, coordinated, lightning quick response, that while probably unnecessary, demonstrated what the various levels of Government in Canada are capable of when they set their collective minds to a task.  The 62 page final report from Ontario’s Chief Medical Officer of Health is at least 60 more pages than any government official working in healthcare has ever written on prevention strategies for the heart arrhythmia diseases that claim the lives of 700 otherwise healthy young people each and every year.

On October 27, 2014 I will be attending the first ever National Strategy for the Prevention of Sudden Death in the Young  meeting at the Canadian Cardiovascular Congress in Vancouver. (Thank you Dr. Sanitani and Dr. Krahn) A small group of EP’s and other stakeholders will hopefully begin to delineate some critical pathways and kick start some meaningful prevention activities across the country. This meeting coupled with the proposed Private Members Bill in Ontario is as much positive activity as we have ever seen. In my next blog I will report on the discussions at the Vancouver meeting  as well as work we are doing with Ontario School Boards and Hamilton area Family Health teams.  By October 2015 perhaps we can be a mile or more into the 100 mile journey.

Epinephrine Auto Injectors in Restaurants

Not a well thought out proposal

My hometown Hamilton, Ontario has been receiving continent wide attention for  a unique proposal put forward at city council to make it mandatory for restaurants and shopping mall food courts to be equipped with epinephrine auto injectors.  On its face it may seem like a good idea but when you break down the numbers the chance of a Hamilton family benefitting from this program are about the same as their chance of winning a 6/49 lottery scheme. At the same time restaurant owners will be required to throw $280.00 in the trash each year.  There are proven anaphylaxis prevention strategies that could be implemented with $150,000 that would be far more effective at preventing life threatening events.

Prior to Sabrina’s Law (Jan 1, 2006) paediatric death triggered by food allergies was very rare in Ontario, less than 1 per year from 1986-2000. Since Sabrina there were no reported deaths in the province from 2004 until the tragic 2013 event in Burlington, that’s one in 10 years across the entire province, population 13.5 million. That equates to about one event every 250 years in a city of  half a million residents.  The majority of children that are anaphylactic to a known allergen are identified and their parents are responsible for insuring that they are protected from both known triggers and lethal reactions when they occur.  The chance that a potentially lethal anaphylactic event involving a child will occur in a Hamilton restaurant in the next 10 years, and the only available epinephrine is the auto-injector supplied by the restaurant are slim and none, and Slim is out of town.  The chance that one of these auto-injectors will be used to save a child’s life during a two year trial period is microscopic.

The financial burden on restaurant owners is not insignificant. Auto-injectors cost $140.00, each restaurant will need to purchase two, a 15mg dose for smaller patients and a 30 mg does for larger patients. Staff must be trained and program integrity must be maintained. Every year the two injectors must be safely disposed of and then replaced at a cost of $280.00. In the current economic climate it hardly seems fair to ask a small businessman to burn at least three hundred dollars a year on a program that has no evidence base to support its potential efficacy.  If the city gives the restaurateurs a break and picks up the $150,000 annual tab for throwing this medicine in the trash, the cost will be borne by ratepayers.

An interesting sidebar to this discussion is the retail price of epinephrine auto-injectors. When a dose of epinephrine is drawn up at a hospital or in the back of an ambulance it costs taxpayers less than 50 cents, which  includes the medicine, the syringe and the needle. The pharmaceutical companies that sell epinephrine on the retail market are taking advantage of parent’s vulnerability and marking the product up 14,000 percent.  Auto-injectors could be sold for $20.00 and the Pharma’s would still make money. It begs the question, who would benefit most from this policy?

If the cost of the program is $150,000 per year, as suggested by a local Councillor on national radio, what alternative strategies could be funded with that money? Are there strategies that would provide greater protection from severe allergic reactions for Hamilton children?  Is it possible to fund auto-injectors for low income families?  Is it possible to require restaurants to provide diners with a list of ingredients that they use that are on the list of known food allergens?  Is it possible to require restaurants, especially those with outdoor seating, to take steps to reduce the presence of stinging insects – wasps, hornets, bees?  Is it possible to invest in free anaphylaxis awareness education for parents and caregivers, including seminars and online training tools?  Is it possible to reduce wait times for children that have had a mild to moderate reaction to an allergen to see a specialist and get tested? 

All five of these suggestions could be funded with $150,000 per year with money left over and I’m sure that people far smarter than me could come up with a list of five even better suggestions on how to prevent and respond to anaphylactic reactions.

A STEMI Protocol for Muskoka and Cottage Country

Ontario’s 15 cardiac catheterization labs and the interventional cardiology teams that staff them represent a significant investment in achieving the best possible outcomes for ST-Elevated Myocardial Infarction (STEMI) patients. Paramedics are equipped and trained to recognize STEMI heart attacks and transport patients to the regional cath lab with a goal of achieving the international gold standard time of 90 minutes door-to-balloon (DTB) – that is 90 minutes from when the Paramedics make patient contact to when the Cardiologist restores blood flow to the affected part of the heart by inflating the balloon at the tip of the catheter. Patients that are treated at a cath lab within the 90 minute window enjoy significantly improved short, medium and long term outcomes for both return to a good quality of life and survival.

The vast majority of Ontarian’s, as many as 12 of 13.5 million residents, live within the 90 minute catchment of a regional cath lab when transported by land ambulance. One notable exception is the tens of thousands of people that migrate to Muskoka and cottage country during the summer months, especially on weekends. By design cottages are remote places and access is complicated by kilometres of twisting gravel roads and in many instances the need to cross water. Achieving 90 minute DTB times using land ambulance is not possible from most cottages. The cath labs at South Lake in Newmarket and Health Sciences North in Sudbury are tantalizingly close but not quite attainable. Even the proposed cath lab at Royal Victoria in Barrie will lie outside the 90 minute window for most of cottage country. The new cath lab at Peterborough is now accessible from many cottages in the Kawartha Lakes and Haliburton regions, but certainly not all.

It is the right time to consider the viability of having an air ambulance dedicated to Muskoka and cottage country, perhaps only as a May to September program, perhaps only from Friday to Monday. The appropriate first step is a review of EMS call volumes for the past several years, looking at calls – cardiac, trauma and other – where air ambulance was requested or where the patient may have benefited from air ambulance. If the data suggests that call volumes warrant a dedicated helicopter for Muskoka a deployment strategy should be developed. This may involve having a helicopter based out of Muskoka Airport in Bracebridge during peak volume periods.

The high cost of building and maintaining Ontario’s world class STEMI response program has been met. The cost of providing access to the program for tens of thousands of people that have a permanent residence within the 90 minute window but spend a significant number of days each year cottaging or vacationing on the periphery is incremental.  A dedicated air ambulance for Muskoka, tasked with getting STEMI patients to the cath lab within the 90 minute window, should be viewed as a value added proposition, not an expense. It was the tax dollars of the people in cottage country that in no small part funded the development of the Province’s STEMI program, it seems only fair that a relatively few additional dollars be invested to provide them with year round access.

The true value of an air ambulance access program will be realized when patients that would have been left debilitated (or dead) and facing months of expensive rehab are now coming home within days of their MI with little or no loss of heart function, little or no death of heart muscle and enjoying a rapid return to a lifestyle that in many cases is better than what they were experiencing pre-heart attack.  The cost saving to the healthcare system when these outcomes are achieved is significant.

Leading Cause Prevention Strategies, along with many other CPR and First Aid training agencies and local EMS services, is dedicated to providing Cottager’s with the knowledge and tools to achieve the best possible outcomes for cardiovascular emergencies. The first step in achieving good outcomes is early recognition and management of the warning signs and symptoms of heart attack, stroke and cardiac arrest. Even if first responders restore a blood pumping rhythm to a cardiac arrest patient with early CPR and early Defibrillation patient outcome is compromised if there is no early access to advanced care. Even if first responders recognize the signs of heart attack and Call 911 immediately, patient outcome is compromised if there is a delay in restoring blood flow to the affected part of the heart. The work that we do helping Lake Associations and cottage families build cardiac safe environments will be lost if patients do not have rapid access to advanced care and cardiac cath labs.

Mandatory Arrhythmia Awareness in all CPR Classes

This year, like every year, more than 7,700 people age 35 and under will die suddenly of cardiac causes in the US and Canada. Roughly half of them will experience fainting episodes or exhibit other warning signs in the months, weeks and days prior to their death. If these sentinel events are recognized and acted upon a great number of at risk young people will not die.  Several of the diseases that underlie paediatric Sudden Cardiac Arrest are genetic, with a dominant gene transmission pattern, and therefore many asymptomatic first degree relatives might also be saved.

All properly taught certification level CPR training includes a discussion on Heart Attack and Stroke warning sign recognition and management. It is time to include a discussion on recognizing and responding to the warning signs of paediatric heart arrhythmia diseases in every CPR class with extra attention being given to the discussion for classes being taught to educators, coaches and any adults that are responsible for the well-being of children.

The basic warning signs of inherited heart rhythm disorders are as follows:

·        Fainting (syncope) or seizure during or shortly after physical activity, especially if it happens repeatedly

·        Fainting (syncope) or seizure resulting from emotional excitement, emotional distress, or auditory startle

·        Family history of unexpected sudden death during physical activity or during a seizure, or any other unexplained sudden death of an otherwise healthy young person

Other warning signs include; brown outs (near fainting); a strong sensation of palpitation or racing heart; extreme shortness of breath (new) with exertion - more so than other children.

The recommended response to all loss of consciousness fainting is to Call 911, even if the child quickly regains consciousness and “seems fine”. For both fainting and all other warning signs parents should be advised of the event, provided with information (a pamphlet or a link to a web page) on heart rhythm disorders and encouraged to consult a physician that is trained to recognize paediatric arrhythmia. 

Every CPR Training Agency, both not-for-profit and private, should be required by state or provincial law to include a discussion of the warning signs of Paediatric Inherited Heart Rhythm Disorders in every class.  Special attention should be given to the topic when the audience is educators, coaches or any other group that works directly with young people.  Already eight states have passed or are considering legislation that will make awareness training of paediatric heart rhythm disorders mandatory for coaches, sport officials and physical education teachers. We need every state and province to mandate this training as a required component of every CPR class.

The evidence to support the inclusion of Arrhythmia Awareness in every CPR class is abundant und unequivocal. The International Liaison Committee on Resuscitation (ILCOR) was asked to consider a recommendation to include Arrhythmia Awareness in all Basic Life Support training classes as part of the 2010 BLS Guideline Recommendations.  They chose a softer position regarding the follow-up by coroners of all potentially cardiac related deaths of young people. Even if ILCOR chooses to ignore the evidence state and provincial legislators can still choose to act in the best interest of at-risk young people.

The Untapped Resuscitation Goldmine is in the pre-EMS Phase

Scientists love rigor - controlled environments, carefully defined processes and known variables (is that an oxymoron?).  Much of the research relating to the resuscitation of cardiac arrest patients in the out-of-hospital setting is focused on therapies delivered by healthcare professionals beginning with Paramedics and then moving through the system to the ER and the CCU.  Patients that receive effective therapies – quality chest compressions and defibrillation – prior to EMS arrival are at least six times more likely to survive (31.7% vs. 5.2%) than EMS attended patients and yet this group remains very small representing less than 6% of all cardiac arrest victims. Common sense dictates that it is time for a resource re-allocation that shifts the focus from what happens to the patient after EMS makes contact to what happens to the patient prior to EMS contact.

http://www.sca-aware.org/sca-news/aha-releases-latest-statistics-on-out-of-hospital-cardiac-arrest

The pre-EMS world is a little messy and unpredictable.  Although we know that there will be a next event it is impossible to know when and where it will occur. It involves the great unwashed masses and there is no way to control or predict how any individual or group will respond when faced with a friend or family member in cardiac arrest (or is there?). It can be nearly impossible to collect reliable data about how the event unfolded prior to EMS arrival.  In consecutive post event investigations responders to the first incident told me with confidence that they shocked the patient three times - the ECG download showed no shocks, in the second event bystanders said with conviction “No, we didn’t shock him at all” - the download indicated two shocks.  Scientists are not happy working in this chaos and as a result little research is focused on this most critical stage of resuscitation.

Out-of-hospital cardiac arrest is one of the most studied medical phenomenons in the world and researchers have access to high horsepower data sets that often include more than 10,000 SCA events.   Every time large data sets are analyzed the pure gold, survival to hospital discharge, is always found in the Bystander Initiated Response cohort. Therefore it almost defies logic that that preponderance of research dollars is spent on studies that are seeking to find out such things as which pharmacological therapy or which cooling strategy initiated by Paramedics is the most effective.

More research dollars should be dedicated to finding ways to build communities that have high rates of Bystander CPR and high rates of Bystander Delivered Defibrillation. The critical question has to be, how can we increase the percentage of patients that have ROSC prior to EMS contact?  How can we take what is proven to be the most effective therapy, bystander response, and ensure that it happens significantly more often? I will share some ideas in upcoming blogs.

In addition to research, scientists and the organizations that fund them also need to come out of their offices and laboratories to meet with politicians, senior bureaucrats, leaders in education and sport and explain to them the simple truth - Improving the historically dismal survival rates for out-of-hospital cardiac arrest is entirely dependent on the community’s willingness to take ownership of the issue. Mandatory placement of AED’s in broad spectrum of venues and mandatory CPR training for broad spectrum of citizens is the simple and inexpensive solution to  an enormous problem that isn’t nearly as vexing as scientists would have us believe.

Why is simple, inexpensive and effective not the pathway of choice ?

Achieving the Best Possible Outcomes for Cardiovascular Emergencies - Part 3 of 3

What could be accomplished with Two Dollars?

In Ontario roughly 20% of the population is age 55 or older. In a typical LHIN (Local Health Integration Network) with a population of 1,000,000 this represents about 200,000 people. A budget line based on $2.00 per age 55+ resident dedicated to raising awareness amongst older adults of how to recognize and respond to cardiovascular emergencies would represent an annual expenditure of $400,000 of the best money ever spent on healthcare.  Provincially that’s about $6.4 million out of the $49 billion healthcare budget.

Managing the care and rehabilitation of patients that have experienced Heart Attack and Stroke represents a multi-million dollar cost to any healthcare system. Due to the extremely high cost of treating patients that have experienced the worst possible outcomes every healthcare jurisdiction invests heavily in developing facilities and teams of specialists that are tasked with achieving the best possible outcomes. The tools and the techniques that these interventional teams use are at the leading edge of medical technology representing the culmination of billions of dollars of worldwide research and development costs. The programs are so expensive and highly specialized that in Ontario only one in eleven (15 of 165) hospitals are set-up to perform the cardiac procedures.

What I find fascinating is that the same billions of dollars of research has shown conclusively that the independent variable with the strongest association to good outcomes for Heart Attack and Stroke victims is time, specifically the time from symptom onset to definitive treatment. In-hospital improvements to programs may result in incremental improvements in time to treatment but the potential for quantum improvement lies entirely in the pre-hospital realm and specifically with the lay public - the patients, their families, coworkers and friends.

The gold standard treatment times of 90 minutes for Heart Attack (STEMI) and 180 minutes for Stroke will only be achieved consistently when the majority of the adult population is knowledgeable around recognizing and responding to observed symptoms. Every time the gold standard time to treatment is achieved the healthcare systems saves tens perhaps even hundreds of thousands of dollars. We should also pause to consider the human cost of missing the 90 or 180 minute window.

Every month I teach CPR to between 50 and 100 older adults across Ontario and we typically spend up to an hour discussing Heart Attack and Stroke recognition and response.  The vast majority of the adults I meet are somewhat aware of the symptoms, totally unaware of how to respond when symptoms are observed, unaware of the importance of a timely response and most importantly unaware of the life altering difference in patient (and family) outcomes for those that are treated within the gold standard timeframes.  Especially with adult learners explaining the why of things, in this case significantly better patient outcomes,  is the most effective way to deliver the message.

If every LHIN in Ontario hired one fulltime Health Promoter, with an appropriate program budget, dedicated to raising awareness amongst older adults of how to recognize and respond to cardiovascular emergencies measuring the impact of their efforts, in both economic and human terms, would likely be the best news story that many LHIN’s would have to report on each year.  Through stakeholder networking to create opportunities for workshops and presentations and effective use of both traditional and social media a little money could go a long way to disseminating the “time is of the essence” message.  Realizing the economic benefit of increasing the number of Heart Attack and Stroke patients that arrive at Ontario’s world class facilities within the target time from symptom onset is some of the lowest hanging fruit in the healthcare system

Note: The task of educating the public on Heart Attack and Stroke Recognition and Response is entirely separate and distinct from promoting lifestyles that contribute to good cardiovascular health.  Programs aimed at lifestyle modification will have little or no effect on “symptom onset to definitive therapy times” for patients experiencing a cardiovascular emergency.

Achieving the Best Possible Outcomes for Cardiovascular Emergencies - Part 2 of 3

What does the best possible outcome for Heart Attack or Stroke look like?

I was at The Cottage Life Show in Toronto last weekend, promoting CPR and AED’s (Automated External Defibrillator) for the family cottage.  A couple stopped by the booth to ask a few questions. Both were healthy and happy and I would have never guessed that less than a year ago he had suffered a significant myocardial infarction. The reason he looked and felt so good – immediately upon the onset of symptoms 911 was called and he was taken directly to the cardiac catheterization lab at Sunnybrook Hospital and emergency angioplasty was performed well within the 90 minute target time.

Over the past six years I have met many patients that have been treated within the 90 minute door to balloon time (DTB) window that is the target for all STEMI (ST Elevated Myocardial Infarction) programs and it would be impossible to tell that any of them had recently had a significant MI.  Most patients that make the 90 minute DTB window have suffered little or no loss of heart function and little or no permanent damage to the heart muscle. Return to a good quality of life often takes only a few weeks and return to work often occurs even sooner than many patients would have hoped for.  Many STEMI patients have told me that they “feel better now than they have in a couple of years.”

Last summer I met a neighbour walking his dog.  As he approached I didn’t even notice his slight limp and wouldn’t have guessed he had recently suffered a stroke unless he had told me. His story was similar to the stories of most stroke patients that are home within a few weeks with little or no noticeable deficit – both he and his wife instantly recognized what was happening and wasted no time in calling 9-1-1.  The Paramedics transported him directly to the Regional Stroke Centre where he received thrombolytic therapy within two hours of the onset of symptoms.

These two real world examples are what I would define as “the best possible outcome” for Heart Attack and Stroke. After a short stay in hospital both patients were home, physically and neurologically intact, enjoying a very good quality of life and quite willing to buy green bananas.  

What does it mean for patients, families and taxpayers when the best possible outcome is achieved?

For spouses, children, grandchildren, friends and co-workers to have a person they care about come through an acute cardiovascular event with little or no permanent deficit and able to return quickly to a pre-event quality of life is priceless.

For our overburdened healthcare system the price of not consistently achieving the best possible outcome for heart attack and stroke is one that we can no longer afford to pay. When Heart Attack and Stroke are allowed to run their course and visit the maximum damage upon the patient the result is lengthy hospital stays including many days or weeks in intensive care, the costliest level of care.  Many patients are unable to go directly home but must go to a rehabilitation facility where they re-acquire simple skills needed to manage daily living. Return to anything like their pre-event quality of life, including return to work, may take months or years or may never happen.  Many patients will have an intimate and costly relationship with the healthcare system for the rest of their life. 

The investment required to educate older adults (and for that matter everyone) how to recognize and respond to significant cardiovascular emergencies is miniscule by comparison. In a world where communication and knowledge sharing is omnipotent and omnipresent it astounds me how few of the adults that attend my classes have even a rudimentary knowledge of heart attack and stroke recognition and management. I do know that for two dollars for every adult over age 50 we could go a long way toward providing each of them with the knowledge and tools to achieve the best possible outcome for Heart Attack and Stroke.