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?

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.

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.

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.

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.

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.

What’s wrong with what Lamaze has to say about Cesareans?

Those that have read this blog for a while should know that beyond being a proponent of Cesarean by Choice – I believe in every woman being empowered to make the birth choice that best meets her needs and those of her family. I don’t believe any specific birth choice should be demonized or glorified (they each have their respective risks and benefits) – and that women should have access to care that best meets the individual needs of both themselves and their families. This means being given information on the risks and benefits of the options available, being given information on the likelihood of those risks and benefits materializing, being given information on what would happen should those risks materialize, being able to ask any questions that should arise, and being respected in whatever choices are made.

I loathe misinformation – and I particularly loathe misinformation that can result in significant harm to both women and their children or undermines their ability to make an informed choice in conjunction with their care providers.

As such, I’m really not a fan of what Lamaze has to say on the topic of caesareans (btw they’re hosting a twitter chat at 9PM ET, 6PM PT (#LamazeChat, #Cesareans, #CSections) ) – particularly if the following video is any indication of what they have to say on the matter. https://www.youtube.com/watch?v=6nTRfkFY7bs&list=UU30VEgTpH82jFw21xC-Dy2w&feature=share

First, let me say that listening to Lamaze on the topic of Cesareans seems as wise as listening to Similac on the topic of breastfeeding. Lamaze is a big company – and what does it sell: vaginal birth – or more specifically childbirth education classes to prepare women for planned vaginal deliveries. Planned Cesarean birth is in direct competition to planned vaginal birth – and those who choose Cesarean have no need for childbirth preparation classes that focus on vaginal birth. So it’s a wise business strategy for Lamaze to sell the idea that a caesarean birth is a bad birth and that taking their classes can reduce your risk of having a Cesarean birth. Unfortunately this strategy harms women and their babies in a myriad of ways and is based on a foundation of misinformation, half-truths and outright lies.

The video that Lamaze has produced – illustrates beautifully how Lamaze uses misinformation, half-truths and outright lies to sell vaginal birth (this may take a while). The video produced begins with the declaration that Cesareans can save lives….BUT…then goes on to decry the fact that one in 3 women have Cesareans in the US. This is where the web of lies and misinformation begins. It is true that upwards of 1 in 3 BIRTHS are via Cesarean, however, this does not mean that 1 in 3 women who give birth will have Cesareans. The rate of Cesarean birth in the US is roughly comparable to the rate of Cesarean birth in British Columbia, where approximately 31.4 percent of all live births were Cesarean sections in 2011. (Source: BC Vital Statistics Agency 2011 annual report, Figure 11). However, the headline rate of Cesareans masks important differences between different groups of women who are giving birth. In December of 2011, the Perinatal Services of BC produced a report that looked more closely at caesarean delivery rates in British Columbia using the Robson Ten Classification system. (http://www.perinatalservicesbc.ca/NR/rdonlyres/3CE464BF-3538-4A78-BA51-451987FDD2EF/0/SurveillanceSpecialReportRobsonTenClassificationDec2011.pdf ) The report provides some important insights into which mothers are having Cesarean sections in British Columbia (and is probably pretty comparable to who are having Cesareans in the US). Among Rookie moms (first time mothers or nulliparous) – there are three distinct Robson 10 groupings – those with a single head down baby at term who go into spontaneous labour (Robson Group 1), those who have a single head down baby at term who are either induced or delivered by caesarean before labour (Robson Group 2), and those who have a single butt first (breech) baby (Robson Group 6). Among moms in group 1 (rookie mom, head down singleton baby, spontaneous labour at term) one in 5 delivered by Cesarean (19.8 percent), those in group 2 (rookie mom, head down term baby, induction or CD before labour) nine in 20 delivered by Cesarean (44.5 percent) and among first time moms with a breech baby 19 in 20 were delivered by Cesarean. Among those who had given birth before and did not have a uterine scar and had a head down baby: fewer than one in 38 (2.6 percent) of those who went into spontaneous labour at term (group 3) delivered by way of Cesarean, and among those who either had labour induced or caesarean delivery before labour (group 4) the caesarean rate was 13.1 percent or slightly more than 1 in 8 . Among those with a head down term baby who had given birth before via caesarean (group 5) nearly 8 in 10 delivered by way of caesarean (78.9 percent). Those who had given birth before, including those who had a uterine scar and had singleton breech (group 7) had a caesarean delivery rate of 87 percent. The Cesarean delivery rate among moms of multiples (group 8) was more than 7 in 10. All those with a transverse or other abnormal presentation had a Cesarean rate of 80.6 percent or more than 8 in 10. Women who had a single vertex pregnancy that was delivered prior to term (less than or equal to 36 weeks gestation) had a caesarean delivery rate of a little less than 3 in 10. Those who couldn’t be categorized into the Robson 10 system, either due to incomplete information or otherwise had a Cesarean delivery rate in excess of 9 in 10 (93.1 percent).

Ideally, it’d be nice if the Robson system would distinguish between those who elected caesarean, and those who did not as important information is unavailable when the treatment plan is unknown. Many women might have elected for or chosen Cesarean and as a result this table does not give a good indication of the percentage of planned vaginal births that result in vaginal deliveries. It would also be nice if nulliparous moms who were expecting multiples were separated from those who had been to the childbirth rodeo before. Further, an even better understanding of Cesarean rates (and a woman’s individual risk of having one) could be had if rates were further stratified into other variables like age, maternal BMI, expected large baby, small maternal stature, etc. But atlas I digress.

At any rate – the use of the Robson 10 groups clearly illustrate that there is a lot of variation at work beneath the headline Cesarean rate, and that the use of the headline rate likely over-estimates the risk of having a caesarean for many women, particularly those who have been deemed to be “low-risk” pregnancies (singleton, term, head down with healthy mothers). The take home message for moms to be is the following: your risk of needing a Cesarean during labour and delivery is an individual risk that is a function of a variety of individual factors and to better understand the likelihood of YOU needing a Cesarean, you need to have a detailed conversation with a qualified maternity care provider.

The Lamaze video then goes on to declare that the rate of Cesareans is “Double what Unicef and the World Health Organization” recommend. This is one of those zombie statistics – it simply refuses to die. In 2009, the World Health Organization retracted its recommended rate of 15 percent http://www.bbc.co.uk/news/10448034 because “there is no empirical evidence for an optimum percentage” and “what matters is that all women who need Cesarean sections get them.”

Lamaze in their video then proceeds to delineate the risks of Cesarean birth to moms (post-operative infections, complications from anesthesia, blood clots, injury to organs, infertility and placental complications in future pregnancies) and babies (including accidental surgical cuts, intensive care admissions, premature delivery and breathing difficulties at birth and beyond). I’ve got call a very loud foul on how this information is presented for a few reasons: 1. Lamaze does not distinguish between planned and unplanned caesareans, and I should note that most unplanned caesareans are the result of trials of labour that were abandoned. The risks to mom and baby are very different depending on if the caesarean is planned or unplanned. 2. Lamaze does not put the risks into any kind of context – is the risk being described a near certainty or a rarity? 3. Lamaze does not detail any of the benefits of caesarean delivery. 4. Lamaze does not detail any of the risks of vaginal delivery. All this part of the video seems to do is to motivate women to avoid caesarean delivery (note I’m only 39 seconds in at this point).

Then comes the hard sell: Lamaze tells women that they can reduce their risk of Cesarean in the following ways and that doing so is “pushing for better care”:

1. Get educated – take a Lamaze childbirth education class.

This is where women should just stop listening to what Lamaze has to say because it’s abundantly clear that Lamaze is not in it for the benefit of mothers and babies, Lamaze is in it to sell their product: childbirth education…and more specifically education on “natural childbirth”. The video encourages women to find a class near them, to get facts and support from a “certified educator” and to “learn from other moms”. No evidence is provided that shows a woman’s individual risk of having or needing a Cesarean is modified as a result of taking a childbirth education class – Lamaze or otherwise.

2. Choose a provider and birth setting with low caesarean rates. The video encourages women to ask about their provider’s caesarean rate, the caesarean rate of the hospital or birth center and that if the rate “sounds too high” to shop around and switch providers.

Here is where Lamaze’s advice takes a potentially dangerous turn. I have a major issue with using Cesarean rates as an indicator of quality obstetrical care. Encouraging women to choose a provider or birth setting based on rates of Cesarean can lead women away from quality care and towards outcomes that are utterly tragic. A provider or location with a high Cesarean rate might be an excellent choice – even for a woman who desires to avoid a caesarean and to give birth vaginally if doing so is safe for herself and her baby. Conversely, a provider with a low caesarean rate might be an excellent choice even if the mother wishes for a maternal choice caesarean. Providers and facilities with high Cesarean rates might be caring for a high-risk population, they might be respecting maternal choice caesarean, and/or substituting Cesarean for instrumental (forceps or vacuum) delivery. If a provider or facility has a low Cesarean rate it might reflect inadequate access to Cesarean delivery that could put mothers and babies are risk of serious and life threatening situations (death and long term disability). Mothers need to choose a provider who they can trust and who is qualified to advise them on the best care for both themselves and their babies – and facilities that are equipped to ensure that access to the best care is available. The best providers, likely don’t really give a damn about their Cesarean rates but care deeply about making sure their patients (both moms and babies) make it through the process as safely as possible. The best care providers also care a great deal that the women they serve do not feel violated as a result of their birth experience and are bound by professional ethics and standards.

The video then goes on to encourage women to hire a doula for labor support – as it will shorten labor, reduce pain, and help the father or birth partner support the laboring mother.

I have mixed feelings about doulas – I’m sure some are great, and are a tremendous resource to women as they go through the birthing process. But some are ideological zealots who frustrate the relationship between a woman and her care provider. Ultimately, I have a hard time seeing how the presence or absence of a doula would mitigate an individual woman’s risk of needing a caesarean section. An epidural on the other hand, does do many of the things that Lamaze claims doulas do: it can shorten labour, is a proven method of pain relief, and if you aren’t in pain, you likely aren’t cursing out the father of your child, which probably helps him to support you. Further, with an epidural in place, if you ultimately do need a caesarean it can often be topped up and allow you to avoid a general anesthetic…I’ve even heard that an epidural can be placed but not dosed until the mother feels it is necessary.

I’m now at 1:37 in the video – the point where Lamaze encourages women to “let labour start on it’s own”. It claims that induction carries health risks, that you’ll know baby is ready to be born, and that your body will be ready for birth.

Generally speaking, I do not believe that care providers recommend induction unless they believe that the risks of induction are less than the potential benefits of induction. Further, there is recent evidence that labor induction might be tied to a lower risk of C-section (http://www.empr.com/labor-induction-tied-to-lower-c-section-risk/article/344514/) according to a review published in the Canadian Medical Association Journal. The same review found that there were also significant benefits for the fetus including a lowered risk of fetal death and admission to a neonatal intensive care unit. I’m also going to criticize the video for failing to indicate what the risks of induction are, or the magnitude of those risks.

At 1:50 the video encourages women to avoid “routine” interventions. It claims that continuous monitoring can falsely signal trouble leading to a caesarean, that being confined to a bed can make it harder to deliver, and that water and food restrictions can leave you weak and exhausted. The video encourages women to ask their care providers about the interventions used.

Here are my problems: 1. I’d be far more worried about trouble not being detected and falsely believing that everything was okay with my baby when it wasn’t. 2. Many hospitals do not require that mothers be confined to beds, some have “walking epidurals”, and 3. Experiencing hours of unrelenting pain can also leave you feeling weak and exhausted. I agree that women should ask their providers about the interventions or procedures that are used, and that they should be apprised of the associated risks and benefits.

At 2:09 the video encourages a woman to question a Cesarean if either mother or baby are in no immediate danger. It encourages women to ask what the alternatives are and what the risks of waiting are and to understand the short and long term risks of surgery and that long labor is not a medical reason for a Cesarean.

Again, in my experience – qualified care providers generally do not recommend proceeding to a Cesarean unless they feel that the risks of continuing with a vaginal delivery outweigh the risks of proceeding to a caesarean. There may be benefits to either the mother or baby to avoiding a situation where the mother has been utterly exhausted by labour and a real risk to the health and safety of the baby has materialized. In some facilities – OR resources are not continuously available and if the probability of vaginal delivery is low, it may not be worth the risk of having the resources be unavailable should they prove to be needed. Further, recovery from a Cesarean may be more difficult if labour has be unnecessarily prolonged. Lastly, the short and long term risks of Cesarean delivery (and vaginal delivery) would ideally be discussed and understood long before the day of delivery arrives.

The video then goes on to discuss Vaginal Birth After Cesarean, declaring it is a reasonable option for most women with previous caesarean, that routine bans are not based on evidence, and that VBAC success is as high as 74 percent.

Lamaze fails to provide the risks and benefits of VBAC – and fails to mention that in the event of the most serious complication of VBAC, uterine rupture, that immediate access to surgical care is needed to avoid lifelong disability or death for either mother or child. Further, the VBAC success rate of 74 percent is in an ideal case – where the woman had the prior Cesarean for a non-recurring reason, has a low-transverse scar, and is carrying a singleton pregnancy.

The video ends with the statement: “push for the safest, healthiest birth possible”.

Too bad that what Lamaze is advocating for likely is not “the safest, healthiest birth possible” for many women - and might lead many women to distrust their care providers, feel tremendous guilt should they ultimately need or choose cesarean and might result in birth trauma, lifelong disability or death for some women and their babies.

Why the lack of Private Health Care threatens Medicare in Canada

Canada is unique in the world in the sense that its universal publically funded healthcare system is a domestic monopoly. Under the Canada Health Act, domestic access to privately funded health care services that are covered by the provincial health insurance plan is prohibited. If it is a service that is not covered under the provincial health insurance plan – like a cosmetic nose job or a vasectomy reversal – then access is through the private system and patients pay out-of-pocket. It is interesting to note that waits for medically necessary, but “elective” procedures (note: elective simply means scheduled in advance) are rather endemic, meanwhile waits for medically un-necessary elective surgeries (ie. The cosmetic nose job) are fairly minimal. It is a stark contrast.

The provincial health insurance plans are funded via tax revenues and medical service plan premiums (note these are nominal premiums that do not vary as a result of risk – really more of a head tax than an insurance premium). It should be noted that not all provinces in Canada charge a medical service plan premium. The province also determines which services are covered and which services are not covered – and this also varies between provinces. All urgent and emergent medical care in Canada is publicly funded and considered a priority – as such, after the resource needs of those healthcare demands are taken care of in priority to the non-urgent or elective healthcare demands. However, the resources available to meet those demands are not infinite, and as a result the remaining health services must be rationed, simply because there is not enough resources to pay for everything that doctors and patients have decided are needed. However, even between elective services, the priority of those services varies and so access to healthcare services is again limited. Those whose healthcare needs are determined to be of the lowest priority face the longest waits – and it is theoretically possible for a patient deemed “not a priority” to never gain access to that service in Canada even though that patient and that doctor have determined that having access to that particular service is in the patient’s interest. That patient has paid their taxes and health insurance premiums, but cannot access the benefit to which they are entitled because their needs are determined to be lesser than other people’s needs in the system. Further, because that patient never accesses the health service that they needed – the government never has to pay for it, keeping health expenditures artificially low. It should be noted that the government does not track the number of health services “needed but never delivered”. That patient has very few options: they can go without the service entirely or they can go abroad to access the service. The one option the patient does not have is to pay out of pocket to access the service or guarantee access to the service in Canada because this would contravene the Canada Health Act.

Many – including Dr. Danielle Martin, the head of “Doctors for Medicare” – have argued that this status quo (a public monopoly on the provision of services covered by the provincial health insurance plan) should be defended against those who would like to see a parallel private health insurance or “dual practice” emerge in Canada. They fear that allowing privately funded healthcare will weaken the universal public healthcare system. Theoretically, this is possible in a variety of ways:

1. The private system would require doctors and nurses – doctors and nurses who would be exclusively available to the public system if no private system exists. To the degree that staff shortages already exist, they would be exacerbated, and the public system would struggle even more so to meet the needs of the public. The competition for human resources could drive up wage costs, and put further pressure on healthcare expenditures.

2. The private system, and the dual practitioners would have an incentive to keep wait times long in order to steer people into the private system for their own economic benefit.

3. The private system would take the “cheap and cheerful” patients who are most profitable and leave those who are complex and expensive to care for to the publicly funded system. As a result, the cost per case handled in the public system would increase.

4. The complications that result from health services delivered in the privately funded system, some of which may be urgent or emergent in nature, might be left to the publicly funded system – increasing demands for non-discretionary resources and leaving even fewer resources for those with elective health care needs.

5. Healthcare services might be “inappropriately” used, in other words people and their doctors might decide to undergo unnecessary procedures.

6. Public resources would be needed to accredit facilities providing privately funded healthcare services.

7. People might become less willing to pay towards the publicly funded universal health system if they carry parallel private health insurance, and as a result attempts to bolster tax revenue in support of that system would be met with even greater resistance.

Indeed it is possible, that a parallel private system could, in theory, result in a deterioration of the universal publicly funded healthcare system.

It is also possible, that a parallel private system could, in theory, strengthen the universal publicly funded healthcare system, and that the absence of a parallel private system results in harm to Canadians and the universal public healthcare system.

1. A parallel private system could expand employment in the healthcare sector – many jobs that would be created would be high-quality and high-paying jobs. The competition between the private and public sector could improve working conditions for those employed in the healthcare sector, making it a more attractive field to work in.

2. If remuneration for procedures in the private sector was regulated, the incentive to steer patients into the private sector from the public sector would be ameliorated. This would be particularly true if there were strong regulations with respect to the ownership of private healthcare facilities. It is irrational to think that a physician would care if his or her services were publicly or privately funded. Further, the participation of the physician in the public sector could be regulated such that he or she would be required to fulfill their obligations to the public sector. For example, private practice might be allowed only if the physician meets a specified number of hours of public service. This is done in some countries with parallel private systems that allow dual practice. Note: Many physicians in Canada find that the number of OR hours available in the public system is far below what they would like. Further, there is some evidence that the quality of healthcare services relies on practitioners being able to perform an adequate volume of services.

3. The impact of cherry picking patients who are “cheap and cheerful”, depends on how healthcare services are funded. Currently, healthcare services in Canada are funded on a combination of “block funding” and fee for service. It is true that the publicly funded health care system would lose the portion of the funding that is associated with the fee-for-service for that particular patient. However, in a circumstance where demand for publicly funded services exceeds the supply of publicly funded services, the money not spent on that patient WOULD most likely still be spent on some other patient, assuming the budget for publicly funded health services remains the same. The existence of a parallel private system might bring demand for publicly funded services closer to the supply of publicly funded health services.

4. The complications of delayed access to care might be avoided as would some of the complications and their costs associated with foreign access to care (some Canadians access care in Asia, Mexico, India and other places with burgeoning health tourism industries and unfortunately that care is not always of the same standard as care that is provided here).

5. A parallel private system might enable justified restrictions to accessing care in the public system, care that might be considered inappropriate or inefficient use of public healthcare dollars. In short a physicians’ ability to say no might be improved. Further, the decision whether or not a patient submits to a treatment should not be a matter of policy – if the patient and the physician have determined that the patient would benefit from undergoing the procedure, he or she should be free to do so – even if it means they need to pay out of pocket.

6. Public resources are needed to accredit and inspect all sorts of private businesses – there is no reason to think that the resources needed could not be raised from the revenues generated. The cost of accreditation might be more than covered by the increased tax revenue from the private health industry.

7. The willingness to pay for public services in general depends on whether or not people believe they are getting good value for their tax dollars – to the extent that a parallel private system might improve the efficiency and effectiveness of the public system, the public might become even MORE willing to support the public healthcare system. To the degree that a parallel private system expands the tax base (by increased employment and reduced losses of income as a result of healthcare waits avoided) – resources available to the public system might be improved.

8. A wait time guarantee in the public system could be meaningfully implemented if recourse to a parallel private system was available.

9. The laws and regulations that govern the delivery of health services in Canada could be brought into compliance with the Canadian Constitution.

10. The ability to “whistle-blow” about quality deficiencies might be improved as both patients and providers would no longer fear losing access to local healthcare or local employment should they disagree with what is happening.

Allowing private health insurance doesn’t mean abandoning the concept that access to health services should be a reflection of need, not ability to pay and it could enable a strengthening of the universal public healthcare system. If a parallel system could enable the public system to operate more efficiently with stronger guidelines and oversight, it is even possible that the set of services available in the universal public system could be expanded to include dental care and pharmaceuticals (much like in the UK). Maybe there’s good reason that Canada stands alone in its prohibition against privately funded healthcare: it’s an outdated model that simply doesn’t work. Many countries have strong universal public healthcare systems AND parallel private health insurance and achieve excellent healthcare outcomes at reasonable levels of healthcare expenditures – it is time we joined the ranks of the countries with the best healthcare systems in the world.

Canadian Healthcare: Not as Universal as Some Might Think

In Canada, every baby born in Canada, is Canadian (*with the exception of some babies who might be born to diplomats). It doesn't matter where that baby's parents are from - and as a Canadian every baby born in Canada is entitled to access to the publically funded Canadian healthcare system. But, when should that baby's right to publically funded healthcare begin? Should that baby have different access, because of the origin of one or both of it's parents than another baby also born in Canada? Should it matter if that baby's mother is Canadian or if it's father is Canadian? Should it make a difference if, at some future point, that baby's mother will be eligible for publically funded Canadian healthcare?

It may come as a surprise - but, access to publically funded healthcare in Canada is not universally available to all pregnant women in Canada.

There are pregnant women in Canada who are uninsured and must pay out of pocket for healthcare services related to pregnancy and childbirth - many of whom intend on making Canada their home, many of whom are carrying the children of Canadians, many of whom will ultimately have access to publically funded health services.

The fact that these women will bear Canadians, and might well become Canadians or otherwise entitled to access to publically funded healthcare seems a fact that has gone unrecognized by whoever thought it was a good idea to exclude access to publically funded health services from these women.

I imagine the intent was to save healthcare resources for the Canadians who pay for the system - but I will argue that this policy is not only cruel, it is short-sighted and might well cost the very same healthcare resources it was intended to save.

Pregnancy and childbirth are exceptional times in a woman's life - at no other point is the health of both woman and child more vulnerable. At no other time is the health of the child so intertwined with the health of its mother. Care during pregnancy and childbirth matters - a lot. What is done or not done - echoes for the rest of that woman and that child's life. If access to high quality care is delayed or denied, there are consequences - both physical and psychological. Access to that care should not depend on the mother's ability to pay for it.

Right now, the policy is that unless you are Canadian or a landed immigrant you are not entitled to publically funded health care, and if you happen to be in either British Columbia or Ontario there is a three-month waiting period for eligibility - so if you were a Canadian living abroad who recently returned, you might also find yourself excluded from publically funded health services. It doesn't matter that there is a massive back log that impedes the processing of immigration applications. It doesn't matter that you may be married to a Canadian or that the baby's father is a Canadian. It doesn't matter that you would ultimately become eligible for publically funded health insurance or that the services that you are seeking to access are considered "basic care".

So what does this mean?

This means that the health and well-being of mothers and children in Canada might be at risk. This means that basic care might be foregone if the mother cannot afford to pay for it or if doctors and charities are inadequately resourced to provide it. This means that conditions that can be managed or diagnosed prenatally might go undiagnosed and unmanaged. This means that a mother might decide to give birth unassisted or at home, even though a hospital based birth might be better suited to her needs and those of her child. This means that some of the truly adverse consequences of pregnancy and childbirth - some of which might be avoided with better care - will be realized.

Who will pay for those left disabled as a result of inadequate care during pregnancy and childbirth?

Here's a hint, pregnancy and childbirth is far more dangerous for babies than it is for mothers. Those babies are Canadians. They are likely to pay with their lives or their health - and if they pay with their health, guess who is on the hook? Guess which resources will be used? Further, if the mothers eventually become eligible for access to publically funded healthcare - who will pay for the longer run consequences of inadequate care during pregnancy and childbirth?

Is it not better, to pay for an ounce of prevention? Is it not more fair to give every baby born in Canada the same access to healthcare - even before their births - regardless of whether it happens to be their mothers who are Canadian or their fathers who are Canadian?

Pregnancy and childbirth are exceptional - and are deserving of an exceptional policy response that recogizes the need to meet these health needs for these women and these children.

I encourage my reader's to sign the following petition demanding change to this shameful policy.

Background information:

- Uninsured mother's likely to have inadequate prenatal care.

- Tyee article on uninsured mothers in Canada.

- Mother gives birth in Hotel due to uninsured status.

- Canadian doctors call for action on uninsured.

Guest Post: Maternal Choice Cesarean, One Mom's Story

The following is a guest post from a brave cesarean by choice mother who is willing to share her experience in the hopes that others might be better able to understand and support cesarean by choice. She is now 3 months post-partum and enjoying motherhood the second time around. I thank her for her submission to Awaiting Juno and for the permission to post her story on my blog.

I had a c-section with the birth of my second child. It was elective, by my request. The first birth I experienced was an extremely unpleasant experience that I preferred not to repeat.

I'm not the type of person who shares my life choices all over the Internet, but I want to share my experience for the knowledge of those considering the same choice. I’ve heard about 1% of childbearing women opt for a maternal request c-section. My experience was very positive; everything I had hoped. After a less than ideal vaginal birth, it felt good for things to finally go in a way that was ideal for me.

There is stigma against choosing to have a c-section. The phrase “too posh to push” comes to mind. There’s also some confusion about women being happy with the procedure. “Why would anyone choose that?” Well, the answer to that question is highly personal! And trying to insult women by calling them too posh to push isn’t going to make us feel obliged to answer.

Still, there’s the stigma. I chose to avoid it, along with the demand for an explanation by simply not telling anyone who was not close with me. Since before I conceived my second baby, I knew a MRCS was my preference. I would even say that it was my plan. My husband witnessed the vaginal birth of his first son, and to say that he was on board with my plan would be an understatement. Next, I told my mom. She was on board. My family was on board. My husband's mom also was on board. She had four precipitous labors (that means she labored and birthed extremely fast). She told me she never understood why anyone would want a natural birth. She had four and she hated all of them. She never had any other choice, because her labors were literally that fast. And, kudos to her, she was the only woman who was honest about this with me during my first pregnancy. Since I ended up laboring for 24 hours, an unfathomable amount of time to her, she thought a c/s was a totally reasonable option.

One night I went out with one of my best girl friends. I was craving some crepes, so we went to a diner. I decided to tell her about my plans. With her being a feminist and also generally extremely supportive of any choice her friends would make, I was shocked and hurt when she said, looking bewildered, "Why?! You're so young! C-sections are terrible! (She has no kids.) My aunt had a c-section and all of her staples flew out of her when she puked!"

So, don’t expect support from everyone. Also, take no shit from anyone. That’s my advice. It doesn't matter why you want a c-section. You don't owe the world an explanation. You especially don’t owe them a polite explanation. After all, people who think they deserve any say in what you do and do not do with your vagina are also not polite. And those who think that you are going to damage your offspring and rob them of gut flora and IQ points by choosing this are also wrong and not polite. They also tend to believe everything they read on the internet. You’re better than them!

At the time of my first pregnancy I was coming from a religious and homebirth-affiliated background. My friends who were mothers were all pretty smug, proud, and touted all things natural, so that was the route I chose to go down, too. It was scary to be pregnant so young. I was 19. I almost home-birthed, but my mom talked me out of it, so I ended up having a vaginal birth in the hospital. The staff was overall great and really kind to me, even though I was a horrid patient to have. Still, the birth was just terrible, physically and mentally: 24 hours of labor, three hours of pushing, 8lbs 13oz of baby on my (previously) small frame… It just wasn’t good. I tore externally (but not all the way to the back) and I also tore internally. I did have an epidural, but I decided to let it wear off while I was pushing, so I felt the tearing, and I felt my baby being born. I had vowed to myself that I’d never forget (like my friends who said they did), but now I wish I could forget.

My internal tearing was the main problem. It happened because my baby was big and stuck in the birth canal. We couldn’t get him past a certain point without forceps. It was the posterior wall of my vagina that tore, into the wall of my rectum, almost all of the way through. I still remember what it felt like when my doctor began to stitch it up. Sexual intercourse stopped being so painful around nine months later. It was a disturbing thing to work through. Not to mention the stress incontinence. I couldn’t cough, sneeze, laugh hard, jump, or run without peeing myself. Despite wanting a second kid, I couldn’t agree to the idea of another vaginal birth. I got dizzy and faint thinking about my first one. Plus, I didn’t want my unpleasant symptoms to worsen. My psyche and my body thanked me for my c-section. A vaginal birth was so undesirable to me, that if it were my only option, I’d never have had another baby.

One day my mother ended up randomly joining me for my OB appointment. I hadn’t brought up the issue yet. My mom spontaneously did. "If she wanted to have a c-section," she said, "would she be able to?" My OB said that would be okay and she asked me why I wanted to. I told her I didn't want to relive my vaginal birth and cried. She was really kind. She comforted me and read the dictation she wrote after my first birth. She said between that, and my emotions, my request was totally fine with her. She even scheduled the surgery for the exact day that I wanted, even though she was planning on having it off. She came into the hospital early that morning for my family and I, and then went home.

The rest of the story is short in comparison to what I’ve already written because it was a breeze after that. It was simple, easy, relatively pain-free, happy, and everything that I wanted to happen. That isn’t the reality for some surgeries, but for mine, it was.

We went to the hospital early in the morning in December to check in. Our check in time was 5am and the surgery was scheduled to start at 6am. No food or drink from midnight until after the surgery. The nurse directed us into a brand new comfortable hospital room. She asked some questions, got an IV started, and basically told me what to expect and what she would be doing for me. Two anesthesiologists came to my hospital room and explained to me the spinal I was going to get for the surgery. Pretty straight-forward, a lot like the epidural I’d had before.

My husband and I waited around in the hospital room. We felt pretty calm. We just chatted and had a good time until the OR was ready. When it was time to go down, my husband and I parted ways for a moment. He had to get his scrub outfit on. While he did that, I got my spinal. It was a good arrangement because he is phobic of needles. I hugged a pillow and curled my torso forward around it the best I could with my huge pregnant stomach being there. There was a nurse smiling at me, hands on my shoulders, talking to me. The spinal was actually not as easy as my first epidural. The anesthesiologist was placing… what I assume was a needle… and he hit a spinal nerve. That sounds terrible, but it really was not so bad. I said, "There's a weird feeling." They asked where. I gestured towards it and tried to explain. It was about a foot long vertical stretch, just a tad to the right of my spine. It felt like a weird minor pain I get sometimes on a tooth I have where it's chipped. That's the only way I know how to describe it. It lasted maybe thirty seconds total, and then it faded and the numbing started to happen.

My husband came back. They were monitoring my oxygen and blood pressure. A catheter was put in (SOO glad they did that after the anesthesia, not before). My OB asked if I could feel her touching me. I couldn't, so I said no. She felt different parts of my abdomen and body to see if I could feel anything. The answer was always a no. So, they started the surgery.

I still didn't feel anything. I had a bit of adrenaline, and the occasional chill. When the blood pressure cuff would squeeze my arm, it made my right hand clench uncontrollably. My husband made the mistake of holding my hand while that happened. That was a funny moment for me.

Anyways, my baby was born after not too long. The OB said something along the lines of, here he is, he is beautiful! Then he cried. I looked over and watched as they cleaned him up nearby, as per my request, before I held him. 8lbs, 3oz, 20.5" long! If I carried him to his due date he would have rivaled my first baby in size. Some people who have c-sections say they feel a huge amount of pressure as the baby gets pulled out of them, but I didn't feel that different or weird. Or anything. They wrapped Baby Andrew up and we got to hold him, cuddle him, look at his face. I didn't feel any pain and so I felt like I could be entirely mentally present. I was just so giddy and happy. I did not feel that way with my first birth. With this birth, I was just ecstatic and completely without pain.

While that happened, my OB performed my tubal ligation. She found out that I only had one ovary and one fallopian tube. Interesting. I asked the team if I could take a picture of my placenta and show my best friend, the one I had went out to the diner with, because she had always wanted to see a placenta. They let me, and then they asked what I wanted to do with it next. I didn't want it. And then we made fun of lotus birth together.

At some point, the anesthesiologist took pictures of my husband and I with the baby. I adore those photos. The anesthesiologists always stayed right by my husband and I, keeping us company, talking about life. We talked about our families together, and they answered all of the questions that I had in detail. They were absolutely amazing the whole entire time. My baby got to stay with us always.

Recovery was pretty easy. I threw up after my first birth, but not this time. I had occasional nausea but it stayed under control. The first thing I could have was chicken broth. Then, I believe I was eating snacks a few hours after the surgery. Those hours flew by, so it wasn't an issue for me. I started to feel just a bit sore, but it was nothing like how I felt with my first birth. Also, the pain was in a different location, and it felt less…disturbing.

I have no complaints about my recovery at all whatsoever. It was somewhere between day four and day five that I stopped taking pain medication. Again, sooner and better than my first birth. The only thing that was worse was standing up and walking for the first time after surgery. I had spent a lot of time lying in the hospital bed at an incline, so I hadn't had my torso straight for a while. Straightening it out was a bit painful and strange, but after the second or third time, it felt much more normal.

I haven't felt pain related to the delivery for a long while now. I'm a little over three months postpartum. Healing came so easily. I wonder if my mental preparedness played a part in that at all. I have had no issues at all whatsoever with intercourse. I felt “ready” 2-3 weeks after the surgery, but we were good and waited. My stress incontinence even seems to be gone… No more leaks, ever. I should mention that to my OB next time I see her to ask if she did something during the surgery to make that happen, or if it's just a happy coincidence. I know she was aware of the issue.

I can't think of anything else to say, except that I am SO happy with my choice, so happy I was supported and able to make that choice, and I have not even one iota of regret. My husband also had a much better experience. It was so much less traumatic for him. I’ve heard people say their surgeries hindered them from bonding with their babies, but we felt like it was easier to bond with our baby this time. We had a better idea of what to expect, nothing traumatic happened, and my pain was very controlled. No complaints! I’m just grateful and happy.

Not now but not, not ever

The last few months have been personally challenging – and a big part of that challenge was coming to the conclusion that I had gone as far as I could go with respect to holding my care providers, and the hospital to account for what happened to me. That – one of the tools that I saw as perhaps being the most effective in terms of preventing the same thing from happening to someone else (litigation), simply was not going to be available for me to use at this time. I had invested a lot of emotional and intellectual energy into pursuing it and it is heartbreaking. I still believe that litigating was and is the right thing to do, but that it just isn’t possible right now, not because it is without merit but because what is needed to succeed at this time just isn’t available and there was no amount of wishing or wanting or brainstorming that could take care of the barriers that stood in the way. Those barriers were both structural and systemic and personal.

It is particularly difficult because I know, now – nearly four years after I had my daughter, that women in Canada are still struggling to access the care they need, when they need it. They are still struggling to find doctors who listen to what they need, who provide informed consent and who respect their right to make a medical decision for themselves after considering the risks and benefits of their options.

It happened in Alliston the other week – and is happening again as I type in Ottawa to another mother, a mother who just wants to be heard. A mother who just wants her right to informed consent and the right to make medical decisions for herself respected.

And it will continue to happen until there is profound change and a shift in focus away from the things that do not really matter and towards the things that do.

Which is why, while I have had to discontinue the case – I refuse to discontinue with the cause. Because there will come a time, when the barriers will be mitigated and surmountable but only if those barriers continue to be dismantled.

It’s why this blog will continue. It’s why the maternity legal action fund needs to be supported. It’s why the Cesarean by Choice Awareness Network will continue to grow and remain a place for women who would choose cesarean and those who support them to connect with each other and advocate for change. It’s why Moms Forward will be established. It's why I'll continue to tweet (@AwaitingJuno) and continue to raise awareness and advocated for change.

Because some day being a Cesarean by Choice mom will be better - with a strong community, with better access to compassionate and competent care providers, and meaningful recourse and support. I have not given up – but have accepted that there are things I can do, and things I cannot do, and that not now does not mean not ever.

I apologize for letting down those who had hoped that the litigation would proceed, and would like to thank all my readers for their continued support.

An Update from Alliston, Ontario

My last post focussed on the difficulty a mom in Alliston, Ontario was having in trouble accessing her preferred method of birth - a maternal request cesarean. This post is intended to provide an update.

The baby arrived the day before yesterday, after an induced labour that lead to a normal delivery. The mother agreed to be induced by her OB because then she would be the doctor on-call so that if there were any bumps the mother felt the doctor would "be more lenient" in proceeding to a cesarean. The mother was able to get an epidural, and the baby arrived without any complications.

Prior to the delivery, the mother did all she could to secure a cesarean.

But the reality in Canada, even in 2014, is that sometimes even when you do all you can - it simply isn't enough.

I am also aware that it is possible that in this case, the mother will accept how things unfolded and might even be happy with the ultimate result. I do not believe she changed her mind about what she wanted to do - rather, she gave up on thinking that anything other than a trial of labour was going to happen, and under those circumstances made the best of it by choosing to be induced when her doctor was on-call and ensuring access to an epidural. It is her birth, and her feelings around it are for her to determine - and how she feels about it now might not be the same as she feels about 6 months or a year from now. Just as many women who plan on vaginal deliveries and ultimately wind up with cesareans are accepting and even happy as a result.

On the same token - there are many women who are forced into trials of labour and vaginal deliveries they do not want and are ultimately left psychologically scarred.

In closing I'd like to wish this mother my deepest congratulations on the arrival of her child and I'd like to thank all of those who offered advice and tried their utmost to assist in this situation. I'd also like to lament the fact that yet another mother has had her right to make a reasonable medical decision taken from her, and has made decisions that were ultimately very different from the ones she would have made had she been adequately supported. The physical outcome might have been better in this case - but I am by no means convinced that the overall outcome, the one that includes psychological health and well-being is better than what would have happened had her choice been supported.

Like Watching a Movie When You've Already Read the Book

I am blogging about this with the permission of the mother involved.

There’s a caesarean by choice mom in Ontario (Alliston) who has contacted me – and unfortunately her story seems to be unfolding pretty much as my story unfolded with the birth of my daughter. Except, her OB told her at 33/34 weeks that she would not do a caesarean unless there was a medical indication for one, but if a medical indication presented itself that they would move to a caesarean as soon as possible. The doctor implied that the “Ministry of Health” would have a problem with her undertaking a maternal request caesarean (I call BS!). My doctor failed to refer me until 32 weeks, and I did not know if my request would be granted until I was 36 weeks.

The woman was upfront about what she wanted with her care provider from the start of her pregnancy (as was I). Had the doctor been upfront with the woman at that time, she could have moved on to an alternate provider that might have facilitated her request (as might I have). Instead, she was treated paternalistically (as was I) by a doctor who seemed sympathetic, who seemed to listen and to understand – but who ultimately frustrates what is desired by the patient by ensuring that what is wanted cannot be realized.

After being informed by her doctor that her care plan is unlikely to be realized – this woman has been left scrambling. She’s gone back to her family doctor hoping that if he advocated for her that her plan would be facilitated. No luck. She’s written a letter to her doctor that says she does not really consent to a vaginal birth and that she is worried about the potential harms of vaginal birth for both herself and her daughter. She’s pointed out the NICE guidelines on caesarean by choice (she’s Canadian so they don’t really apply). She tried to give her doctor Pauline McDonaugh-Hull and Magnus Murphy’s book “Choosing Cesarean: A Natural Birth Plan”. Her doctor declined reading it. She is currently left hoping something goes wrong so that she can have the caesarean she wants. Her OB wants to begin performing “stretch and sweep” procedures at her 37 week appointment next week.

I’m saddened that nobody has seen fit to refer this woman for a psychological assessment – as the idea of a vaginal delivery causes her a considerable amount of anxiety, they are declaring they won’t do the caesarean without a medical need – without recognizing that the mental health impact of an unwanted vaginal delivery IS a medical need. Rather than investigate that, they just out-rightly have denied this woman access to the care she needs and are doing so in a rather unethical way, by having delayed referral to the point where alternate care is not possible. The lack of understanding and compassion is appalling – as is the lack of recognition that a woman has a right to decide what to do with her own body and she should not be unreasonably prevented from doing so. This woman has not fallen through the cracks, so much as she has been shoved into a crevice.

So what would I do if I were faced with that situation?

I might start contacting lawyers and legal aid to figure out if there was some way to avoid having my rights violated. I might write a letter to the College of Physicians and Surgeons of Ontario calling out the behaviour of the physician. I might contact the media about my plight. I would contact Birth Trauma Canada for advice. I might contact the Office of the Ombudsman and file a complaint. I might contact patient rights organizations with my story. I might go to a different hospital with a reputation for being more “woman friendly” at 39 weeks and beg for a caesarean. I might hire a psychologist to try and advocate on my behalf – or maybe contact a perinatal social worker to see if she could help. I might ask the doctor to provide me with a medical reason not to perform the caesarean. I would go to another care provider – even if it meant the on-call OBGYN at the hospital and I would continue to make my wishes known in as clear of a way as possible.

And ultimately, if all that failed and I was still subjected to a vaginal delivery I did not want. I’d do what I’ve done – try to handle it as best I can, to try and cope with what has happened, to try and not let it impact my life more than it needs to because you can’t change the past – you can only do what you can to make the future a better place.

I’m really sorry that I cannot do more for this mother – it is like watching a movie when you’ve already read the book. Sometimes you can only hope for a different ending.

P.S. If anyone can help make a different ending happen - please drop me an email at qualitycareforbcmothers@gmail.com. - Thanks.

Tragedy and Hope - Heartache, Death and Birth

At Victoria General Hospital right now there is a man who is waiting for a caesarean section, he waits because his wife, unlike every other mother-to-be is no longer able to wait as she is brain dead. She suffered a fatal cerebral hemorrhage on December 28, 2013. Her husband left to get her some Tylenol for a headache she had, and came home to find her unresponsive. He called 9-1-1, and while they were able to sustain her on life support, the damage was too severe and there is no hope for her recovery. She was 22 weeks pregnant at the time. She has been kept on life support since, in the hopes that her unborn son might be born safely at 35 weeks (in about 7-8 weeks time), or emergently if her body begins to fail her before then. Given his current gestational age – the baby already has an excellent chance of surviving the birth (80 percent).

The arrival of Iver Cohen Benson is expected to be bittersweet – a miracle born out of a terrible tragedy. Shortly after his arrival, his mother will take her final breaths and his father (Dylan Benson) will have to say his final farewells to the body of his life partner. He will embark on a new life then – the life of a new father, the life of a single parent, the life of a widower.

I applaud Mr. Benson for having the courage to take it on – he appears to determined to give his son the best life that he can. He has taken leave from his work to be at the side of his unborn son. After his arrival he will need to be by his son’s side for any required stay in the NICU, and after that the hard work will begin. The job of being both mother and father to a very small child while attempting to grieve and heal from a tremendous loss in his life.

Mr. Benson is going to need an incredible amount of support. Not just from his family and friends but also from his community. He is going to need all of the support he can get – all the support that most new mothers need, he will need. All the support that single parents need – he will need. All the support that widows/widowers need, he will need.

It warms my heart to see the outpouring of support that has begun for Mr. Benson and little Iver, but it needs to be understood that the support that has been given so far is just that. A start. This is the beginning of a very long (and potentially very expensive) road ahead, a road that will be navigated alone.

To give some idea about the costs of being a widowed parent to a newborn infant/toddler/pre-schooler think about the following :

1. If Mrs. Benson had survived, she would have received maternity/parental benefits and as a result of her employment (provincial government) her wages would have been topped up while she was on leave (up to 85% during 17 weeks of maternity leave and 75% while on parental leave) – and Mr. Benson would have been able to continue to work. After a year of leave if Mrs. Benson returned to work – she would have earned her income as well as being enabled to contribute to the daycare expenses of the child. If she chose to become a stay at home parent, daycare expenses would be avoided. In Victoria the costs of a full-time infant space is about $1150 per month – nannies are more expensive with live-in nannies costing about $1500 per month and live-outs costing $15 per hour.

2. If Mrs. Benson had survived, her family would have benefited from extended health benefits that she receives as a result of her employment. Unless Mr. Benson also has extended health benefits through his employment, those expenses will be out-of-pocket ones in the years to come.

3. If Mrs. Benson had survived, she may have chosen to breastfeed her son. Given her death and her son’s likely prematurity, he will likely need donor breastmilk. If you are in a position of donating breastmilk, please consider doing so to a breastmilk bank where donor milk is appropriately screened and pasteurized) – in BC information on doing so can be found at www.breastfeedingmatter.ca/html/milk-bank.html - babies like baby Iver benefit immensely from these donations. Eventually, baby Iver will likely need formula – and this can be tremendously expensive, particularly if baby Iver has any sensitivities and is in need of a hypo-allergenic breastmilk. The costs of formula feeding can exceed $500 per month. An excellent resource for those who formula feed is the fearless formula feeder at www.fearlessformulafeeder.com .

4. Being a parent is a very hard job, and being one to a small child is a special challenge that frequently involves sleep deprivation. It’s hard enough when there are two parents able to take on the challenge – as one can often provide some respite for the other. As a result of Mrs. Benson’s death, that respite might be unavailable or might come at a cost – on average babysitters in Victoria charge between $10-$15 per hour.

5. Being a widow is no easy task either. Mr. Benson’s story reminds me of Matt Longelin’s in some ways (www.mattlogelin.com) – he too was thrust into new parenthood and widowerhood at the same time when his wife passed within 48 hours of the birth of their daughter, Madeline. Accessing psychological counselling can run about $160 per hour.

This is why I hope that Mr. Benson can far exceed his fundraising goals and succeed in being the dad he wants to be and giving little Iver the best life he can. I hope little Iver brings him joy. I hope Iver is able to meet his full potential and always knows how much he is loved by his father and his community. I hope the financial toll of losing Mrs. Benson is mitigated to the degree possible – because the loss of a mother is already tragic enough without it also imposing financial ruin on those left behind as they try to grapple with the void that is left.

I should add that I do not personally know the Bensons – but I wish them the best possible outcome under these horrible circumstances.

If you would like to consider donating to Dylan Benson and his son, Iver – they’ve established a donation page at http://www.youcaring.com/help-a-neighbor/baby-iver-fund/133560 entitled "Baby Iver Fund"