Tuesday, July 29, 2014

Mudita (Joy in Other People's Joy)

Mudita is the pleasure that comes from delighting in other people’s happiness, in other people’s good fortune. It is the opposite of the more well-known ideas of envy (displeasure at another’s success) and Schadenfreude – the experience of joy in other people’s suffering.

Perhaps one of the greatest rewards of writing this blog has been the tremendous potential for me to personally experience Mudita, particularly when a mother is able to access the care she needs when she needs it and has a healthy and happy outcome as a result. It is the feeling of Mudita that is a tremendous motivator for me to continue doing what I do and to seek to do more of it – truly there is little that I find more rewarding and fulfilling than the taking of joy in other people’s joy.

As such, when I received an email the other day with an update from Cesarean by Choice mom announcing the healthy and happy arrival of her daughter – it felt as though I had personally won a lotto of sorts. As such, I am pleased to share the email I received from the mother, describing the arrival of her daughter*

July 25, 2014

Hi Janice,

Baby Chloe* made her debut a bit early! She was born on July 4th via c-section at 37 weeks 1 day.

My water broke at 4am and we headed to the hospital. We were spending the weekend at our family cottage so we were almost 3 hours away. They requested we stop at the closest hospital on the way to make sure it was safe to continue the drive. Contractions started at 6am, just as we were cleared to continue our drive.

Labour progressed rapidly and contractions were less than 5 minutes apart by the time I got to triage. My husband was amazing and advocated for me with the on call doc and residents. Everyone was very accommodating and the c section plan was confirmed quickly. By the time I got to the OR, the contractions were less than 1 min apart. I was worried that I would be forced to attempt a vaginal delivery if I progressed too far. In an attempt to avoid this I declined all cervical exams.

Labour is not something I want to experience ever again - even though it was "only" a few hours, it was absolutely terrifying. I don't even want to think about how awful delivery would have been.

My c section was amazing, and absolutely the right choice for me. Breastfeeding was successfully established in recovery and we have had zero issues so far. My recovery has been amazing. I only needed Tylenol for pain, and I was back to normal very quickly. I feel incredibly lucky to have avoided a vaginal delivery. I have 3 close friends that had babies in June, all delivered vaginally, and they are all jealous of my recovery as they each had complications (severe tearing, shoulder dystocia, instrumental delivery with episiotomy). Anecdotal evidence is the best kind :)

I don't think I can say this enough - thank you. I am so happy that I found you online. You have made such an impact on our little family.

I’d like to offer my heartfelt congratulations to this family, and my wish that the mother finds her days filled with Mudita as her daughter grows. I’d also like to thank the mother for sharing her story with me, and for allowing me to share it with my readers. Further, I’d like to thank the OB who provided this mother’s care and the team that saw to the healthy and safe arrival of her child – and her husband, for advocating and supporting this mother throughout her pregnancy and the arrival of his daughter.

*Not the mother or baby’s real name – names have been changed to protect the identities of those involved, even though the story is shared with permission from the Mother involved.

Monday, July 28, 2014

The Days and Weeks that Don't Count

My mom is facing a health challenge - she finds herself in that position that none of us really want to be in, living with a medical condition and going from "person" to "patient". It is non-life threatening, but she finds herself debilitated in a number of different ways. She wants to go back to normal, back to a level of health where she can enjoy her life, back to a level of health where she can go back to work. She wants to be able to retire in a few short years, she wants to be able to play with her grandchildren. She wants to resume an active lifestyle - and is finding navigating the system "a challenge". She has a diagnosis (and has had one since the beginning of June), she has already underwent an MRI (out-of-pocket) and will undergo another in August. She has been seen by a neurologist. And is waiting to be seen by a neurosurgeon. She does not know who she will see, or when. Once she does see a neurosurgeon, she will then know whether or not treatment will be recommended, and then, if treatment is recommended she'll have some idea of how long it will be until she can start on the road to recovery. In the meanwhile, she waits. Days and weeks, and months passing, life for her is being taken in a day-at-a-time chunks. But these days and weeks don't count, she is waiting but the "official" clock has not even started to tick. Because wait times in Canada are not measured from diagnosis to treatment, rather they are measured from the time the specialist (in this case the neurosurgeon who she does not yet even know the name of and does not yet even have an appointment date) makes the booking with the hospital to have the treatment done.

I cannot help but think of all the patients, who like my mom are waiting, about all the time that doesn't "officially" count. All the time spent living lives less than what might be possible after being treated.

I cannot help but worry about the human cost of waiting. The human cost of foregoing the fullest life possible. The human cost of having one medical problem snowball into other medical problems. The toll on relationships.

Surely, the system could work better for patients. At the very least it could provide better information so that those who are in the system have a better idea of how long their lives are likely to be put on hold. It could also better empower patients by providing information on not just the local care options, but also on the alternatives at least within the same province. Further, it could better measure and reflect the actual experience of patients to at least validate the time that currently "doesn't count", because it is time that most definitely does count to those who are waiting to access the care that they need.

Friday, July 25, 2014

The Value of Unused Bandaids

There is a box of Band-Aids and Polysporin on the top of our pantry. We buy them at Costco – so there is quite a quantity and variety. There are Mickey Mouse Band-Aids, and blister Band-Aids, water proof ones, big ones and little ones. If a skinned knee happens, or a kitchen whoops involving the vegetable peeler, we’re covered.

However, we do what we can to avoid needing to use the Band Aids in the first place (I’m endlessly reminding the kids to look where they are going), and should we need them, we also use the Polysporin. Further, when we do find ourselves needing them, we take the opportunity to learn from the experience, hoping to avoid repeating past errors. As a result, we are far more likely to use the Band Aids on stuffies rather than on people. That is a good thing.

The alleviation of suffering once it has happened is meritorious – by all means, bad things do happen (even under the best circumstances), and when they do, it is important to do what is possible to mitigate the harm. This is what the vast majority of health spending is focussed on – mitigating the harm after it has happened.

However, by focussing on merely alleviating the harm after it has happened. By failing to learn from past errors. By failing to take a step back and recognize the tremendous opportunity to prevent harm in the first place (and doing the work that is needed to be done to avoid harm), the health system is limited to having just Band-Aid solutions at its disposal. It is limited to merely coping, and will be making endless trips to Costco to replenish the supply of Band-Aids to alleviate the suffering.

Unfortunately, I think there is an attitude problem when it comes to health care that stands in the way of moving past the Band Aids to a place where fewer Band Aids are needed in the first place. There is an attitude that access to health services should be limited to those who “need” them, where need is defined as already suffering harm. There is an attitude where the immediate needs are considered, but the long-run needs are ignored. There is an attitude that costs and impacts outside of the health system, simply do not count.

Perhaps it is because it is hard to imagine the value of things that do not happen. The value of avoiding birth trauma. The value of avoiding disability. The value of avoiding the harm in the first place. Perhaps because it is easier to cut a ribbon that celebrates the opening of a new acute care facility than to celebrate the much larger success of not having a need for a facility in the first place.

Wednesday, July 23, 2014

The Shift to Appropriateness in the Hunt for Healthcare Savings

The pressure to conserve healthcare resources is intense, for years the government has declared growth in health spending to be unsustainable and has clearly articulated a need to "bend the cost curve". In recent years, there has been some evidence that indeed, the cost curve has been bent, as the rate of growth in healthcare spending has slowed. However, this somewhat ignores the impact of a whopper of a recession - one that resulted in higher levels of unemployment (and therefore, lower levels of insurance for extended health benefits), and also governments that have been exceedingly budget constrained. In a system where all "medically neccessary" care is publicly funded, bending the cost curve can be as easy as the stroke of a pen. Care that is not provided, is not funded - and when only the things that are done are measured, it is easy to be blind to the consequences of rationing care.

It is entirely possible that constrained budgets resulted in greater care efficiency (providing the same care with fewer resources) - if there was a simple efficiency to be found, it was likely implemented. Further, there are likely other efficiencies to be found - but it should be expected that those efficiencies are likely to be the result of upfront investments that pay dividends over time. In short - efficiencies are not all free (and those that were may have come at some expense of quality), and some efficiencies require substantial sums of money to implement in order to realize savings over the long run. Money that is scarce in provincial budgets and governments who do not have the courage to take the long-view on healthcare savings (after all, the benefits might accrue to a different government) - mean those efficiencies might well be foregone.

So, there is a new buzzword on the health policy front. Appropriateness. It is a politically correct way to call into question care that, in retrospect, appears to have been "unneccessary". But what is the test of appropriateness? How are policy makers identifying what is or is not appropriate care? Is there cause for concern and skepticism about the new quest to save health care dollars by applying the lens of appropriateness?

One of the ways policy makers are identifying "inappropriate" care is by examining variations in utilization patterns. It seems reasonable enough, if one area (area A) of care has higher rates of a procedure than another (area b) and outcomes are similar, it seems obvious that some of the procedures provided in area A were "unneccessary". After all, no additional people died when comparing area A and area B. Further, if area A could get their rates down to the rates observed in area B, a significant amount of money could be saved. It is not a very far stretch for a policy maker to then assume that setting a target, and perhaps even attaching a reward for progress towards that target appears to be a good thing.

Alternatively, determining what is "appropriate" care might be done by looking at the costs and benefits at a population level of specific procedures and deciding to support care (by developing guidelines and perhaps paying for adherance to those guidelines or penalizing for failure to adhere to the guideline) that, on the evidence, the benefits exceed the costs of providing the care.

It seems, on its face, to be good policy. After all, the resources that are not used to provide "inappropriate" care can be redirected to other uses in the health system (or the education system, or the transportation system).

It is policy with good intentions.

Unfortunately, like many well intended things, it is policy that could drive the system further away from delivering the best outcomes possible because it provides strong incentives towards guideline driven care, guidelines that might be based on incomplete information and neglects the very individual reality of medical decisions.

Variations in utilization can reflect so many things (differences in availability of services, education or income levels, cultural preferences, etc.). There is so much more to healthcare, and the decisions that are made with respect to undergoing or refusing to undergo a procedure are very much so individual decisions. What is beneficial care for one person, can be detrimental to another - even if they are "statistically the same" with respect to age and health status. There is so much in the way of "quality" that goes unmeasured - and the broad measures of outcomes are simply crude at this time.

Which is why, I am both skeptical and concerned about the buzz around apropriateness in health care. Ultimately, I believe the most efficient healthcare decisions are the result of empowering those with the best information to make the best decision in the circumstance. In healthcare, I do not believe that policy makers and administrators are the ones with the best information to make medical decisions - because those decisions are so intimate and personal. There is an art to medicine - and that art is applying expert knowledge to an individual circumstance and enabling and empowering patients to make the choices that are best for themselves in their own individual circumstance.

There is a certain audacity to then labelling those decisions, inappropriate. There is a certain violation that occurs when the right of an individual is arbitrarily denied. Make no mistake, guideline centred care in the guise of appropriateness, will be very costly indeed.

Friday, July 18, 2014

I Need to Vent

A long while ago (nearly 10 years now), when I joined the provincial government, I had found a pocket where there was a cohesive team. A team focussed on producing quality work, to provide evidence and to help shape and inform policy. A team that leveraged the talents of each of its members. A team where there was a high level of communication and trust. A team that ultimately produced reports that could be read - that brought meaning to the data. Work everyone could be proud and was proud of - a lot has happened since then, a lot that has ultimately changed the culture of where I work, and ultimately has resulted in a depreciation of the quality of work that is produced.

There's been a few scandals - first in 2009, and then again in 2012. To say the least - the damage that has been done is significant.

There is now a very wide gap between "organizational capacity" and output. Whatever, passion, curiosity, teamwork, innovation, etc. there once was - has been stamped out. It is every man and woman for themselves, doing exactly what they are told, no more and no less. There is a culture where, whenever possible, point to somewhere else and someone else - do not produce a number or a piece of work that you can be held responsible for.

A few days ago, I was given a very draft policy paper - a paper that was intended to eventually be used to engage stakeholders to develop policy and implementation strategy to improve care for specific segments of the population. My assignment was to provide the data components to the paper. I read what was written. Or rather, I should say, I tried to read what was written - and was dismayed. There was a lot I could do to make the paper an engaging document, a lot I could do to bring data into to it to start the dialogue. I could help to transform it from a piece that struggled to communicate its goals, into one that would be a quality piece of work, one that would engage those who read it. I consulted with the person who sent up the document to get a clear idea of what the paper was meant to communicate - and set about doing the work. I indicated to my boss that I would like to give in to the urge to rewrite the document. I won't lie, the idea of shaping the paper into something more was exciting. I was looking forward to sending back the revised draft. The work that I had done on it, was promising.

Then my immediate boss, and her boss - came to me (one after the other) and without even looking at any of the proposed revisions, told me very explicitly, that while they thought the paper was very poor that under no circumstances was I not revise the writing. I was only to provide the data. In part because if revisions were undertaken, that then ownership of the document could be placed at my feet. The person who wrote it, should have to "wear it" in their view. Message received.

What about the people who will have to live with the policy that is developed? What about doing quality work and contributing to the efforts of others? What about doing work that you can be proud of?

I'm saddened, I've done the task that was asked of me (no more, no less)- after all what else can you do in the circumstance? The partially revised draft stashed, never to be used - but feel as though by remaining here, I am simply failing and being failed.

Friday, July 11, 2014

Failed Twice: Patients harmed by Medical Error in Canada

It may come as a surprise, but a person who is injured as a result of a car accident or harmed by another’s negligence on private property stands a much better chance of being compensated for their injuries than a patient who is harmed by medical error or negligence in Canada’s health care system. A customer who bites into a bit of metal into a burger and breaks a tooth is more likely to recover compensation, than a woman who is denied access to a timely caesarean and whose baby dies. The former is very likely to be able to gain access to a lawyer willing to take on their case, but the later, could visit more than half a dozen (or more) lawyers, and each time be somberly told that while her injuries are significant, and the harm caused real, that the amount of time and money to pursue the case exceeds the damages that can be expected to be recovered.

As a result, many patients who have been harmed by medical error, even those with technically valid claims supported by clear evidence and clear case law, never file. Of those who do, more than two thirds have their cases abandoned or dismissed. Of those who go to trial, only 20 percent get a verdict in their favour.

The statistics are sobering – having been failed by the healthcare system, patients are then failed again by the justice system.

There are other avenues (Patient Care Quality Offices and the professional colleges that govern doctors and nurses) that a patient who is harmed by medical error can pursue, however, none of them are equipped to compensate the patient for their injuries. None are equipped to compensate for pain and suffering. None are equipped to compensate for lost work, or loss of capacity to work. None are equipped to compensate for the ongoing costs of care that are incurred as a result of the injury. The only thing that the Patient Care Quality Office and the professional colleges can do is investigate and make recommendations for change, issue an apology and maybe, reprimand the physician or nurses who were involved in the care.

Worse, the lack of accountability for medical errors and responsibility to compensate those injured likely results in lower quality care in the healthcare system.

If the vast majority of those harmed by medical error never report their experiences because they know it is unlikely that they will get any compensation for doing so, and may face retribution and stigma for doing so, how are the sometimes systemic problems that cause the harm in the first place identified and fixed? Where is the incentive to minimize the harm incurred to patients? How is failure to compensate patients who are harmed from medical error contributing to a “patient centred” system?

Making access to compensation easier for patients harmed by medical error could be a boon to encouraging a “patient centred” system, that the public can have confidence in and is bolstered by a culture of safety.

These kinds of administrative justice systems are not unheard of in other countries, including Sweden, New Zealand, and Denmark – all of which have no-fault compensation systems for patients harmed by medical error. All of which are countries that in the most recent Commonwealth Fund report had health systems that out-performed Canada’s health system on a wide variety of measures.

Incentivizing patients to report medical errors by appropriately compensating them for justified claims would mean that the system could get a much better sense of the both the kind of errors made and magnitude of the harms caused by those errors. It would provide the information that is needed to identify systemic problems and work to solve them to mitigate the harm caused. It would bring meaningful accountability – and would stop the insult that is often added to the injuries patient suffer as a result of medical error.

Is it not time to correct the injustice victims of medical error suffer in Canada? Are those victims not just as worthy of being compensated as other victims of negligent harm? Or is “patient centred” merely lip service?

Thursday, July 10, 2014

Today, four years ago.

Was the day after my daughter should have been born, and the day before -

The day before she was born.

The day after, and the day before.

Four years on, still on my mind.

Wednesday, July 9, 2014

Big Data - Silver Bullet or Poison Pill?

One of the really big trends in healthcare right now is “Big Data”, it seems everyone is very, very excited about it and what it promises to do. It is the health information Golden Child of the day. There are a lot of hopes that “Big Data” will make healthcare more evidence based, and that policy decisions will be improved as a result of applying “Big Data” approaches.

However, “Big Data” and its use also has “Big Risks” – and might mislead policy makers (and others) to some rather wrong conclusions about what should or should not be done.

To understand the risks associated with “Big Data”, you have to first understand what “Big Data” is – it is the linking together of data sets (data sets that might not have ever been intended to be linked together) and then using that larger data set to undertake analysis. In healthcare, at the provincial level, a “Big Data” approach might involve linking the information contained in the various administrative databases. This includes information on hospitalizations (discharge abstract database), physician services paid for by the medical services plan, Pharmacare data, home and community care data, etc. If it is data in an administrative database and has a unique personal identifier (ie. a Personal Health Number or a Social Insurance Number) it can be “linked” to other databases.

It sounds great – after all, one of the massive problems in healthcare is a failure to do analysis “across the system”. A “Big Data” approach allows for that kind of analysis – it enables health policy researchers to answer some interesting and important questions. “Big Data” is also inexpensive, in the sense that it makes use of data that is already collected so there is no need to go out and collect additional data. It has potential, and it is certainly an informational step forward.

However, there are a few things to consider, important things to consider, things that should make policy makers and health researchers at least pause to consider their reliance on “Big Data” to provide answers to pressing problems.

Caution Needed: Blind Spots, Systematic Biases, Reliability Issues and Dodgy Conclusions

Large databases are now being linked together in “Big Data” projects. The thing is, there are a lot of nuances to the databases, things that without having spent a significant amount of time working with the data or having access to an expert in a particular database (and it is safe to say that the “experts” spend more than a year working just with one of the databases), that a person can be blissfully unaware of. Sometimes the data is not quite what a person thinks the data is. Sometimes, there is a definitional change that drives large differences in the numbers. There is a lot of variation in the quality of the information that is contained in the different databases.

The thing that is absolutely stunning about current health data, is the data that is unavailable in administrative databases- the blind spots. Sometimes the data is nowhere near complete – for example, data on fee-for-service services is reasonably complete but the data on “alternative payment services” is limited, so if a doctor is paid a salary to provide services, there is not a lot of information on the services that were provided or to whom. Further, we have very little data on actual outcomes as reported by patients on their experiences – there is data on the length of hospital stay but little data about whether or not the procedure had an impact on a patient’s quality of life. Then there is another big black box – data on health services that were not publicly paid for, or around 30 percent of total health spending. If all the health databases are collated, approximately 65 ish percent of all public health spending (70 percent of total spending) could be accounted for – this would “paint” a picture of the health system that is a little less than half complete (45.5 percent of the total system as measured by expenditures would be captured).

Now consider that many of the blind spots are systematic. The parts of the system on which there is no data, or little data, or poor quality data are not randomly distributed. They are specific pockets of care about which there is little information. Further, it is conceivable and very likely that they are specific pockets of care that likely affect the population disproportionately.

Then there is an issue of data reliability. Understanding how the data is collected, why it was collected, and for what purpose is critical to understanding whether or not it should be expected to be reliable. "Big Data" collates data from several databases, usually administrative. When those databases were established, they were not established with "Big Data" in mind. The reliability of the databases that contribute to a “Big Data” database is variable. There is some health data that should be taken with a whole shaker of salt. An example is wait times data. Wait times data is measured from the time the surgeon submits the booking form to the hospital, to the time the procedure is completed. If the procedure is never completed for whatever reason, the time spent waiting by the patient for access to care “doesn’t count”. Anywhere where the person inputting the data has little incentive to do so correctly might be vulnerable to issues of reliability and quality. As such, before using a “Big Data” approach – the elements being used should be carefully scrutinized.

If there are large blind spots and/or data that is of questionable reliability or quality in a “Big Data” approach there is a risk of drawing some rather dodgy conclusions. The same risk that emerges when a meta-analysis (a study that compiles the results of studies already done) is undertaken without closely examining the contributing studies/research. The risk of a dangerously mislead conclusion that does not reflect reality and may ultimately harm the health and well-being of either the system or the individuals who are served by it.

Conclusion

Big Data is not a silver bullet for the health system and its inappropriate use may well prove to be a poison pill. Given the current limitations and nuances of the information available, and just as importantly the information not available – the use of “Big Data” to do much more than highlight areas for further investigation should be met with skepticism. In many ways the conclusions drawn from well-thought out and well-conducted original research (the kind where data had to be collected from primary sources and not just harvested from administrative databases that have been collated) might be of significantly higher quality than results from “Big Data” studies. Evidence-based decisions deserve the highest quality information based on an analysis of quality data not just "Big Data", otherwise, there is tremendous risk that the decisions made will be "evidence-based" and completely wrong.

Monday, July 7, 2014

Preventitive Healthcare in the Era of Healthcare Austerity

I spend a lot of time reading and thinking about the healthcare system, about health policy, about what the system does, and about what it does not do. I spend a lot of time thinking about what is measured, and what goes unmeasured. I spend a lot of time thinking about not just the costs of healthcare, but the value of healthcare.

Lately, there are a lot of calls for “less is more”: the campaign to assign low-risk women to midwife led care and to encourage more women to birth at home; calls to discontinue the annual check-up; calls to discontinue screening pelvic exams and mammograms for those between 40 and 49; and calls to not order tests. Many of these calls to reduce the supply of health services have been based on what the evidence has to say about the outcomes that are observed. There is a widespread perception out there that the population is being over-treated and over-diagnosed and that the system could save a bundle of money if the unnecessary things just were not done.

Never mind that the determination of “unnecessary” is almost always retrospective, and not prospective in nature. Never mind that there is a dearth of “patient perspective” research on health care.

We have entered an era of healthcare austerity and there is a surprising lack of skepticism about what “less is more” will result in. A lack of critical analysis about the data we have and what information can be gleaned from that data – and even less critical analysis about the data we do not have and critically need to make meaningful conclusions (and policy decisions). The enthusiasm to do less in healthcare is perhaps a symptom of a system that is simply over-whelmed with the demands that are being made of it and a knee-jerk reaction to do something to manage what seems to be a wholly un-manageable problem.

Doing less seems like an easy and logical answer to the problem at hand.

Unfortunately, there is an incredible risk that broad calls to do less will result in unintended consequences and will ultimately save nickels at an unacceptable cost down the road (most likely at a time when such a cost will be least affordable).

As an example, the call to do away with the annual physical exam, and specifically, the annual pelvic exam ( http://medcitynews.com/2014/07/american-college-physicians-says-womans-annual-exam-shouldnt-necessarily-annual/) – it seems like an easy target for savings. After all there is a lack of evidence of benefit and some presence of demonstrated harm, based on the following study: http://annals.org/article.aspx?articleid=1884537. The results were reported widely – and most women applauded the call to do away with the annual pelvic exam – after all, undergoing an annual pelvic exam is for most women, about as fun as filing an annual tax return.

However, it should be noted the study that called to do away with the annual pelvic exam also indicated that that no studies evaluated the potential indirect benefit of annual pelvic examination being an incentive for women to access health care and eventually receive recommended gynecologic services such as contraception, screening for STI’s or other non-gynecologic care. The study also indicated that there were no studies that assessed the benefits of pelvic exams for pelvic inflammatory disease, bacterial vaginosis and other benign conditions.

The study then went on to expound upon the harms that are caused by pelvic examinations – mostly fear, embarrassment, pain and discomfort.

It then concludes that the routine annual pelvic exam should be done away with, as a medical ritual with little evidence of benefit.

And that is where the drive for “evidence based medicine” is perhaps going off the rails. “No evidence of benefit” is being confused for “no benefit”, and rather than undertaking the necessary qualitative and quantitative research to come to the conclusion that there is “no benefit” there is a headlong rush into broad policy changes.

There is a need for a lot more skepticism when it comes to healthcare austerity – and a whole lot more research needs to be undertaken so that we can be certain that we are not foregoing benefits that are important but unmeasured.

Friday, July 4, 2014

Accountability: Platitudes are Poor Substitutes for Making a Wrong Right

One of the flaws of our healthcare system, is a lack of true accountability for when it fails to meet the needs of patients. The best most patients can hope for when they suffer a lack of access to timely care in Canada is often nothing more than platitudes. It is about the extent of what I got after I complained to the Patient Care Quality Office after the birth of my daughter. I then discovered that to hold the system "accountable" in a meaningful way by pursuing litigation was not viable: the damages I suffered simply could not justify the cost and risk of pursuing litigation. For myself, pursuing litigation wasn't about recovering money, it was about affecting change. It was about working to help other women to avoid having the same experience. It was about the other part of meaningful accountability - the part that comes after "I'm sorry" - the part where the wrong that was done is "righted" to the degree possible.

And it is that second part that for many victims of the health system that never comes. The wrongs that are done are not righted to the degree possible. Most patients are left with the cold-comfort of platitudes and are asked to bear the cost of the harm and moving on from the harm on their own. It is not right, but it is the way things are, in Canada, in 2014.

It is the way things are for Kate Austin-Rivas and her family. Kate Austin-Rivas was happily expecting her second daughter in October 2013 and went to the Royal Columbian Hospital in New Westminster, BC to deliver her child. Due to lapses in care and ultimately lack of timely access to a Cesarean, Kate suffered a uterine rupture and her baby, Ireland was born severly Oxygen deprived and irreverseably brain damaged. Unfortunately, Ireland died three weeks after her birth, leaving behind a void in the Austin-Rivas family. The Austin-Rivas family complained about the care they recieved to the Patient Care Quality Office and ultimately got an apology, however, have discovered (like many patients) that recovery of the damages for the harmed caused is not possible.

If the health system was truly accountable, it would have to do more than merely apologize to the Austin-Rivas family of Port Coquitlam, BC. It would cover the costs associated with righting the wrong (to the degree possible) that was done to them - the costs of therapy for PTSD and the costs associated with a surrogacy or adoption so that the Austin-Rivas family could complete their family in the wake of the loss of their baby. That would be the reasonable and right thing to do: however, the system isn't set up for that kind of accountability. Meaningful accountability. Rather the Austin-Rivas family has been asked to be satisfied with platitudes from the system and are doing what they can, on their own and with help from outside of the system that caused them harm, to move on from the tragic loss of their daughter.

The Canadian health system may not be burdoned by the high costs of malpractice claims, but there's a good chance that those costs are unfairly placed squarely on the shoulders of the patients who have been harmed by the system. Further, by not bearing the costs of poor-performance, what incentives does the health system have to ensure timely access to quality care?

Wednesday, June 25, 2014

Is Hating the 1% worth Hurting the 99%?

Under a two-tier health system, the economically advantaged probably will get access to faster and better care than the average Joe and Jane Canadian on the street. They also send their kids to private schools, drive nicer cars and live in nicer houses in nicer neighbourhoods. Maybe they get to do those things because of a lot of hard work, and maybe they get to do those things because they got lucky – having either won lotteries or being the beneficiary of another’s good fortune.

Some take great satisfaction knowing that under the current system the economically advantaged do not have an advantage over the average Canadian when it comes to healthcare (they fool only themselves). It’s a kind of misplaced Schadenfreude – joy that should someone economically advantaged fall ill, they are at the mercy of the same system as everyone else. Perhaps some think that by forcing the economically advantaged to participate in the same system as everyone else that the economically advantaged will advocate for adequate funding of that system as they have a vested interest in its quality (again laughable, as by the time most people realize the reality of healthcare in Canada it is far too late to become an activist).

The thing is, it does not make a lot of sense to really worry about what the economically advantaged spend their (after tax) money on – be it better houses, health or education. It makes a lot of sense to worry that public systems are adequately resourced, provide an adequate level of access and quality of service and that taxation is fair. It makes a lot of sense to worry that what is provided publicly is done so with a view to both efficiency and effectiveness.

And it makes a lot of sense to worry that the prohibition on two-tier healthcare ultimately harms the public healthcare system and those who must rely on it the most – the middle class and economically disadvantaged.

As much as some people would like to think that the amount of money available via taxation is limitless – it is not. Yes, there likely is a fair bit of room for some tax increases – the GST used to be 7 percent and now is 5, however, there are also a lot of very significant challenges that are on the horizon – including an unfavourable demography, and an ever expanding number of conditions amenable to medical care. And don’t forget, that healthcare is not the only thing that is publicly funded – education, transportation, and economic development also deserve public funding. As such, it’s fair to assume that public resources available for healthcare, both now and in the future are indeed limited.

So what does the prohibition on private healthcare in Canada effectively do? It forces many people who would choose to spend their own resources on healthcare to spend public resources on healthcare (they are prohibited from domestically buying medically necessary services). That leaves fewer resources for those who would have absolutely no choice but to use public resources. It forces others to languish on waitlists, potentially disabled and unemployable because it assumes everyone has the same cost of waiting. Health inequities persist, because the best educated (and coincidentally more likely to be economically advantaged), are more likely to be aware of the health services available and to advocate for themselves for access. Some (if they are lucky enough to have the resources) are forced to go out-of-country to access care (and those who do may impose costs on the public system should the quality of care they receive abroad be inadequate, not to mention also bearing the cost of what would otherwise be unnecessary travel). Some spend their resources on unproven and ineffective alternatives to medical care (homeopathy is just a fancy word for water). And because resources are constrained, as demands on the system grow, the system becomes ever more focussed on urgent and emergent services, relegating medically necessary elective services to a kind of no man’s land where people feel disenfranchised for having paid into a system to which access is effectively barred. Further, the opportunities to expand into public provision of needed but not covered care (pharmaceuticals, optometry, and dental) remain limited. Some doctors, are forced to be either unemployed or underemployed – with some deciding to leave the country.

But, I guess as long as it is believed that the economically advantaged also got the shaft and that our system out-performed the US (albeit that’s the only system in the OECD our system outperforms), that it was worth the pain?

It’s time to quit worrying about whether or not someone else might get “better care” and to start worrying that everyone can get “adequate care” – this foolishness is costing many very average Canadians their health and well-being.

Thursday, June 19, 2014

And in 25 years?

In 25 years, I’ll be 60 and if I stay where I’m at, or even just somewhere else within government, I’ll have a full pension, my children will be grown, the house paid for. I will not have worried about prescription bills, or dental bills – as much of those would be covered under the extended medical plan.

And maybe, if I was still the person I was 6 years ago, I’d be content. Or perhaps, I wouldn’t be so passionate about healthcare or maybe I’d be passionate about something else (like education) and I could move away from health into some other area and happily work there.

But, I am not that woman. I’ve mourned her. I’ve lamented her absence. And in the years since – since I was pregnant with my daughter, since I became a mother – I’ve had to work hard to come to terms with who I am, now. To pick up the pieces of a shattered being and cobble together a mother, a woman, that I and my family can live with. Knowing that there is no way to change the past, there isn’t really any way to even get any accountability for it. There is only now, who I am now and all the days, months, and years ahead.

My work-outside-of-work has been a refuge, a life raft in an otherwise turbulent sea. This blog, a sanctuary. Twitter – an engaging space. Building the Cesarean by Choice Awareness Network – has given life to a community, of which I am privileged to be a member. The patient advocacy and provider engagement work I have done has been some of the most fulfilling in my career. Indeed, my work-outside-of-work has sustained me during some of my most difficult times and has challenged me to think in new ways about healthcare and the health system. It is meaningful and can and has affected change.

It is rather ironic then, that the work that has reminded me of how much I care about healthcare – about the system – is the same work that makes my work-at-work an exercise in tedium and toil. It is my salvation, my destruction and my reconstruction all at the same time.

For now, it is like I have learned many important and valuable things from my work-at-work – indeed at one time, my work-at-work brought me a lot of satisfaction and without that experience, I would be less effective at my work-outside-of-work. But because I changed, and in some measure it did too – there’s an uncomfortable conflict between myself and work-at-work and work-outside-of-work, and every day, a little louder, after I drop the kids at daycare, there’s a voice from within that says, “I don’t want to go to work.” Because going to work means spending another day trying to focus on things that I have a hard time focussing on, means spending another day supporting and defending a status quo, means lamenting all the other things I could have done that I would have found more fulfilling. It means spending another day being drained and in conflict with who I am.

I would love nothing more than if my work-outside-of-work aligned with what I’m paid to do – when there would be an effortless match between what I want to do and what I do. I’d love nothing more to be in a position where there was little gap between what I did, and what I could do. Where, the work was meaningful – and a source of satisfaction. Indeed, it is a shame that the work-outside-of-work does not come with a paycheque…because in 25 years, although I would not have a pension, I could have done some great things, things that matter and things that have meaning. Perhaps, after 25 years, I would have lived a life worth living.

P.S. I'm open to suggestions on how to make the work-outside-of-work come with a paycheque, provided they don't involve moving out of Victoria and are compatable with the demands of children.

Monday, June 16, 2014

What's Wrong with Mr. Picard's take on Birth in Canada?

This weekend I read an article in the Globe and Mail http://www.theglobeandmail.com/life/health-and-fitness/health/its-time-to-stop-treating-pregnancy-like-a-disease/article19163808/ – and found myself seething. Seething because, here was yet another article bemoaning the use of intervention in childbirth – that seemed to be calling for women to be encouraged to use midwives and birth centres and homebirths. Questioning the real necessity of Cesarean delivery – and largely echoed what can be summarized as a “Campaign for Normal Birth” where normal is defined as vaginal and without intervention, including without epidural pain relief. Questioning the necessity of hospital use for 98 percent of births – and the supervision of physicians for the large majority of those births – Mr. Picard thinks fewer babies should be born in hospitals and more babies should be born under the supervision of midwives.

The man is entitled to his opinion – but it’s rather tragic that such a notable and respected health journalist has fallen for the ideology of natural childbirth, hook, line and sinker – and that his stance, and the campaign it reflects does ultimately harm the health and well-being of women and their children.

Let’s begin with the statement that the World Health Organization suggests that the optimum rate of Cesareans are between 5 and 15 percent. This is a zombie statistic – one of those numbers, that even though it has been debunked, simply refuses to disappear from the media. In 2009, the World Health Organization retracted this – stating in its “Monitoring Emergency Obstetric Care: a Handbook” publication http://whqlibdoc.who.int/publications/2009/9789241547734_eng.pdf that there is “no empirical evidence for an optimum percentage” and that an “optimum rate is unknown” and that world regions may now “set their own standards”. But perhaps Mr. Picard thinks that a higher rate of instrumental deliveries (they would be vaginal) and a higher rate of 3rd and 4th degree tears and their consequent risks of incontinence is worth it to have a lower rate of caesareans.

Mr. Picard notes the fact that 58 percent of women “opt for an epidural” – I want to correct Mr. Picard on this. Fifty eight percent of women giving birth in Canada actually get epidurals – we don’t track how many epidurals are wanted or needed but not available and I assure you, particularly in BC, there are plenty of women who would “opt for an epidural” but are denied access to one. But no worries – Mr. Picard assures us that “pain relief can be done outside the hospital, too.” Mr. Picard – exactly what kind of pain relief options are available outside of the hospital? Perhaps you should review the BC Perinatal Health Program’s Obstetric Guideline 4 “Pain Management Options During Labour” http://www.perinatalservicesbc.ca/NR/rdonlyres/BA552F69-560F-480A-8B6C-098BEED7CF55/0/OBGuidelinesPainManagement4.pdf - note outside of hospital you would be limited to the first 3 options. The next time you are having a kidney stone – how about you learn some breathing techniques? Get someone to rub your back? Or maybe you’d like some saline water injections? Maybe a hot shower? Or would someone just reminding you that your “body was made to pass kidney stones” be adequate? Epidural pain relief is the gold standard of pain relief – and the other options that are even moderately effective, are only available in the hospital setting (for good reason). Denying access to pain relief – or leading women on to believe pain relief outside of the hospital is available is cruel.

Worse – there is some evidence that is emerging that inadequately treated pain during labour and delivery is associated with the development of post-natal Post Traumatic Stress Disorder and other post-natal mood disorders. How are the women who perceived their childbirths to be painful – or extremely painful supposed to take Mr. Picard’s assertion that out-of-hospital measures to address that pain should be adequate?

Yes, the vast majority of births are not complicated, however, this is only known retrospectively. Retrospectively, the vast majority of automobile trips do not involve any collisions – that does not mean that we should abandon the use of seatbelts, because most of the time they are not needed. Which brings us to a very interesting finding out of the Netherlands: Low-risk women who were treated under the care of a midwife had worse outcomes (rates of death and disability) than high-risk women who were treated under the care of an OBGYN (ACC Evers, HAA Brouwers, CWPM Hukkelhoven et al.” Perinatal mortality and severe morbidity in low and high risk term pregnancies in the Netherlands: prospective cohort study.” BMJ 2010;341:c5639. (2 November.) The Netherlands has almost the highest perinatal mortality (death) rate in Europe – is this really the model Canada wants to emulate?

Mr. Picard then encourages us not to buy the “too posh to push” nonsense. Mr. Picard – I am that demographic that you are seeking to dismiss. Worse, I am that demographic who has had my needs dismissed and has suffered the consequences of that. Mr. Picard, the women who are choosing Cesarean are not doing so because, “when you medicalize pregnancy and labour, and don’t offer reasonable alternatives, you create uncertainty and fear.” They are doing so because they do not buy into the idea that vaginal birth is the best for themselves and their babies – they do not like the vagaries of vaginal birth itself. It is not the medicalization of birth that creates the uncertainty – it is the inherent nature of the process. Left to its own devices, birth maims indiscriminately. Some of the damage is not known for years – and that is what women who “Choose Cesarean” are seeking to avoid. Again, there is recent research that is demonstrating that when the needs of this demographic – the patient choice Cesarean demographic, are dismissed they are at an incredible risk of developing Post-Traumatic Stress Disorder (Garthus-Niegel, et. al. “The influence of women’s preferences and actual mode of delivery on post-traumatic stress symptoms following childbirth: a population-based, longitudinal study”, BMC Pregnancy and Childbrith 2014, 14:191 http://www.biomedcentral.com/content/pdf/1471-2393-14-191.pdf ). But let’s just call them “too posh to push” – and those who fail to have their needs met can be isolated and ridiculed. Mr. Picard – too little surgery, even on those who do not “medically need” it can be harmful too.

You declare that your article is not to harken back to earlier times – but that is exactly what you are advocating for when it comes to the care women and their babies should expect to get. You declare that only a small amount of maternal mortality is the result of obstetric interventions but do not provide any evidence to support that claim. You declare mothers are healthier as a result of a higher-standard of living and fewer pregnancies because of contraception.

Mr. Picard – that same high standard of living, has not exclusively done what you claim it has done. If you look at the women giving birth today – they are not in their early twenties. They are in their thirties and their forties. They are more likely to be obese prior to becoming pregnant. They are more likely to have used assisted reproductive technology to get pregnant. They are more likely to have underlying health conditions that make pregnancy and childbirth more risky. Further – many of these women are not willing to take the risks with the health of what may be their only one or two children. I beg to differ with your assertion that infectious disease and excessive bleeding are still the biggest risks facing mothers today.

To you birth has become unnecessarily tedious and costly but I would argue that much of that “tedium” and “cost” is money very well spent. Consider for a moment that those giving birth are likely to be actively engaged in the workforce – likely to have another 50 years or more of life to live after they have babies. Consider for a moment those babies who are likely to live 80 or more years. Now the consider the cost and tedium of raising a child who has been injured at birth – or living with the grief of a child who died at birth. Now consider that two out of three babies who die at a home birth (http://www.skepticalob.com/2011/12/2-out-of-3-babies-who-die-at-homebirth.html) might have lived had they been born in a hospital.

I am very much for a patient-centred health system – but to “stop treating pregnancy and childbirth like a disease” is very likely to cost mothers and their babies very dearly. Pregnancy and childbirth is a time of incredible health vulnerability – and to dismiss that is to deny an informed choice about the right care, in the right place, which for many mothers (the vast majority) is care under the supervision of a doctor in a hospital with access to all of the advances of modern technology. I agree a culture change in birth is needed – but that culture change is the recognition that every woman is entitled to make medical decisions (and they are medical) with respect to her pregnancy and childbirth – including the choice to avail herself of the technology available.

Friday, June 13, 2014

Cost Containment in Healthcare: Is it What Matters?

Increasingly, it is apparent that the health care system in Canada (and many other countries) is focussed on cost containment. Don’t get me wrong, cost containment is an important thing – the costs associated with duplicate tests, the costs associated with preventable ill health, the costs associated with inefficiencies and the costs of waiting – are all things an efficient and effective health system should seek to eliminate.

But, I have a confession to make: cost containment as a goal, in and of itself, is as about as sensible as using caesarean rates to measure the quality of maternity care. It is at best misguided – and at worse will pave the road to a health system that fails to meet the needs of patients and results in avoidable death and disability.

I have another confession to make: we don’t do a very good job of measuring costs in healthcare in the first place – nor do we do a good job of measuring outcomes. We are particularly lousy at measuring things from the patient perspective.

Admittedly we have a lot of excellent data (the Discharge Abstract Database, the Medical Service Plan Database, the Pharmacare and Pharmanet Database, the Home and Community Care Database, the Health Authority Management Information Database. There is also a lot of work being done to aggregate the information in those databases to look at use and cost of use “across the system” – but there are also a lot of limitations to that data. If something in the health system was done, and publically paid for we have (at least some) information on that.

However, here’s what we don’t have very good information on. Anything that was privately paid for we have next to no information on. If you went to the states (or elsewhere – India, Mexico, or a number of other countries with burgeoning medical tourism industries) to access care and paid out of pocket, we have no information on what was done or what it cost. If you had a private MRI or CT we have no information on that. If you went to a psychologist and paid out of pocket, again no information. Wait times – our information on wait times in Canada is severely lacking. The wait times that are measured, are generally measured (in BC) from the time the surgeon submits the booking form until the time the treatment is provided. I have heard rumours that some surgeons are not even submitting the booking form until they know the procedure can be completed within a specified period of time. We also have no information on the private cost of waiting – we have very little information on the level of disability or suffering experienced by those who are waiting, nor do we know much about their lost incomes. Further, once a procedure is completed – we do not know a lot about the impact on health that was experienced by the patient who received the treatment. We also don’t have good information on services that were provided under an alternative payment scheme – with some seemingly large gaps in information resulting. We have no information on services that were needed but never delivered.

Further, there are those who are very firm in their opinion that we have enough data and do not need to invest in more data or better data.

And maybe we don’t need more data or better data if cost containment is the only thing that matters in the health care system. Maybe all we need to do is set the budget – and let the pieces fall where they may. Care will be rationed – but it is unclear, if anyone really cares that that is the obvious outcome of a system focussed on cost-containment.

But if the focus is on a health care system that provides quality care – we most definitely do need better data and a better handle on the costs of the system – and just as importantly the outcomes and experiences of patients.

I would argue that, that is what needs to be the focus (quality care delivered efficiently and effectively) if we are to make progress to a high-performing system that delivers value for the resources used. There’s a good chance that it would need to be a hybrid and allow for private health insurance. It’ll probably cost some money – but there’s a very good chance that it’ll pay dividends.

Or we can continue down the path we’re on – the one where the system is very likely and chronically under-resourced. The one where patients are not having their needs met, but their voices go unheard. The one where providers are frustrated because they are not trusted and are hamstrung from delivering the care that they know is wanted and needed. It is wholly unsustainable to have a system that is focussed on “cost-containment” – but by the time we get around to focussing on what really matters (and measuring it), it might be too late.

Thursday, May 29, 2014

And what about what the woman wants? An Ottawa mother's story.

I post the following with the express permission of the mother involved. It is lengthy – but this mothers’ story needs to be told, in full.

A while ago – at the beginning of March, a Canadian mother-to-be in Ontario joined the Cesarean by Choice Awareness Network – at that time she was already 35 weeks pregnant. Her baby was transverse. She had a medical condition that limited her ability to push. She was also told she was ineligible for spinal anesthesia. This was her fifth and final pregnancy, her previous four had been low risk, relatively straight forward and fairly quick vaginal deliveries (note: a history of fast vaginal deliveries puts a woman at risk of precipitous labour). She had pre-existing PTSD from a car accident a year prior. She had a neurological condition which limited the amount of pushing that she would be capable of doing. She was considered a high-risk patient and up until that week, the care plan was for her to undergo a planned caesarean under a general anesthetic at term (39 weeks or more). Then, her doctor did a 180, for whatever reason – and informed the mother to be, that rather than a planned caesarean under a general, he wanted to perform an ECV (an External Cephalic Version) followed by an induction, trial of labour and an assisted (forceps or vacuum) second stage (pushing stage).

The mother wanted a planned cesarean.

I have to admit, that my mind was boggled at the scenario. It just seemed so ridiculous – I mean, I am used to the difficulty faced by women who want a caesarean because they see it as better meeting their needs and that of their family and do not have medical contra-indications to a planned vaginal delivery. That is generally why this blog, and the Cesarean by Choice Awareness Network exists. But this? Has the quest for vaginal birth in Canada gotten to the point where women with very legitimate reasons for caesarean are also denied reasonable access to care? Are we to the point where women are losing or denied their right to make a medical decision for themselves after being advised of the risks and benefits of their options? Have the “soft” indications for Caesarean become fair game for those seeking to reduce the rate of Caesareans?

Surely something could be done to help this mother develop a better plan (one she could actually agree with) – in conjunction with her care team.

After considering her options – and with the assistance of others, the mother drafted the following letter and gave it to her doctor in the hope of having a conversation about what her options were and to assert her right to make decisions regarding her own treatment. Identifying information has been removed.

Dear Dr. X;

I am writing because I have significant concerns about the recent changes to my care plan that you suggested at our last appointment and I would like to discuss my concerns and alter my care plan accordingly.

Until our last appointment I was under the impression that the care plan for the delivery of my child was to undertake a planned caesarean delivery with a concurrent tubal ligation under general anesthetic. It was my understanding that given the transverse position of the baby and several of my other health complications that include a neurological condition, PTSD, an ineligibility for regional anesthetic, and my own desire for no subsequent pregnancies that this care plan was the most appropriate and most likely to meet my needs for the safe delivery of my child. It is the care plan to which I was willing to consent and is the care plan that I still feel best meets my health care needs as it minimizes the risks of death or significant disability to either myself or my child and it avoids the risk of having to undergo an emergent cesarean.

At our last appointment you suggested that the care plan be altered, that I undergo an ECV in an attempt to reposition the baby, artificially rupture the membrane, and that an instrumental vaginal delivery be attempted at that time. Given that I am ineligible for regional anesthetic, I am under the impression that this would be done without an epidural in place and that if it were to fail that I would be subjected to an emergent cesarean under general anesthetic. Further this care plan would require a subsequent surgery in order to realize surgical sterilization.

It is my understanding that an ECV carries several significant risks, specifically:

· An elevated risk of placental abruption – that would necessitate an emergent cesarean delivery and may result in significant and life-long disability to my child.

· An elevated risk of an umbilical cord accident – that would also necessitate an emergent cesarean delivery and may result in significant and life-long disability to my child.

· A risk of enduring significant pain and discomfort as it is my understanding that regional anesthetic is contra-indicated in my case. This may be traumatic and could aggravate my pre-existing PTSD.

I understand that the risks of either a placental abruption or an umbilical cord accident are relatively low – however, the impact of these events should they occur is catastrophic and may mean life-long disability or death for my child. Further, it is my understanding that there is a significant risk of the ECV failing to succeed in repositioning the baby – in which case, an urgent caesarean would be needed.

For these reasons I do NOT consent to an ECV being undertaken to reposition my baby.

Should you proceed with the ECV absent my consent, and the baby be successfully repositioned, it is my understanding that you would then proceed to break my water and attempt an instrumental vaginal delivery of my child. It is my understanding that there are increased risks, both to myself and to my baby of a high-instrumental vaginal delivery. I also understand that my underlying medical condition makes pushing not advisable. I am aware that some of the increased risks involved could result in life-long disability to either myself or my child. Further, given that this is planned to occur in the absence of regional anesthetic, I anticipate that it may also be extremely painful and could be traumatic.

For these reasons I do NOT consent to a high instrumental vaginal delivery being undertaken to deliver my baby.

To be clear, I wish to minimize the risk of death or significant disability to either myself or my baby. Should the care plan that is ultimately chosen result in either death or significant disability – the impact would be catastrophic. I have four children and a husband – and as a result need to minimize the risk of long-term consequences that could result from the care plan chosen and am willing to accept an increased risk of less severe complications that may occur as a result of a planned caesarean care plan (risks like transient respiratory problems, an increased risk of infection, etc.).

As a result, I would like an opportunity to further discuss my treatment options and their associated risks and benefits with regards to this pregnancy – including any other appropriate consults so that we may develop together the care plan to which I am willing to consent, that best meets my health needs and those of my family both now and in the future. In particular, I would like to understand why and how the revised care plan better meets my health care needs in comparison to the care plan that was originally agreed upon.

Sincerely,

Ontario Mother-to-Be

On March 10, 2014, she handed the letter to her doctor and he put it on her file.

Unfortunately, the OB managing the case decided that the mother’s specific objections to the care plan were not reason enough to alter the care plan. He scheduled the mother for an ECV. The first appointment she cancelled. The second, she showed up for, but declined consent and left the hospital.

The mother’s OB was unwavering in his commitment to the care plan he had decided upon – the only problem was that the mother did not agree with it. The degree of distress that was being inflicted on the mother was significant.

Then the baby moved head down – without a version. The mother was partly relieved, simply because a transverse baby is generally considered undeliverable vaginally and going into labour with a transverse baby has significant risk to the health and well-being of both mother and child.

However, the mother still did not want a vaginal delivery, particularly one in the absence of an epidural due to her neurological condition – and was doing the best she could to advocate for herself, including working with a psychologist, having a consultation with an anesthesiologist, and trying to get a second opinion or alternate care provider.

During this time the mother had an appointment with psychiatry – and the psychiatrist she met with indicated to her (as a kind of FYI) that advocating for a planned caesarean over a vaginal birth against the advice of her obstetrician could be perceived as a psychiatric indication that might warrant removal of capacity to consent. When the mother told me that, I have to admit to being floored.

Then it seemed as though the OB was going to relent, and agree to schedule the section. The Mother was told to expect a call from the hospital (she was already past 39 weeks gestation). She waited, and waited. Days passed, no call.

It seemed as though, the doctor had said one thing, but was proceeding with an entirely different care plan.

Finally, after waiting for the call for the Caesarean that never came – at well over 41 weeks pregnant the Mother went in for an induction. Not that she wanted to, but she felt as though she had no other choice – she could not wait any longer.

It was awful – the mother laboured 8 hours and was dilated to 7 centimeters before she was taken to the OR for a Caesarean. The Mother, at about 10pm, after several hours of labour yelled that she wanted a Caesarean – and was completely ignored. It took her husband getting the nurse to get the OB and demanding a section for the woman to gain access to the OR. They told her that the consent forms were signed for a section only as a “security blanket.” Then when she did go to the OR – a nurse had her fingers wrapped around the mother’s trachea and she could not breathe – the nurse told the mother “This is what you wanted.” Within seconds after that the mother was under a general anesthetic and the Caesarean was performed. Her son was born healthy.

Recovery from the Cesarean was complicated by an infection.

The mother intends to file a complaint with respect to her care, and, rightfully so - I applaud her courage for doing so.