Sunday, August 31, 2014

Ethics and Single Payer Healthcare

Ethics can be described as the art of doing the right things for the right reasons. Recently, a family doctor (Dr. Brcic) writing for the Tyee claimed that private for-profit healthcare in BC had egregious ethics because the finances of for-profit care were obscure, accessibility of for-profit care was limited, and that individuals coping with pain and illness were vulnerable.

However, in claiming that the ethics of for-profit care are egregious, it would be a large error, an egregious one, to assume that the ethics of single-payer care are any better. Perhaps what is striking and often ignored are the numerous ways in which conflicts of interests and breaches of ethics occur because of the single payer system and how it is structured.

First, by prohibiting competition in the healthcare sector for medically necessary services and being the sole provider of those services, government is in a conflict of interest. It has a political interest in making it look like the system performs well. It has a financial interest in limiting the amount of money spent on services provided. It has both a political and financial interest in limiting accountability for medical error and system failures. It is fair to say that many measures of the system are cherry picked to demonstrate good performance or obscure poor performance. The system does not measure real wait times. The system does not measure care demanded but not received. The system takes credit, for things that are likely the result of other socio-economic changes. Holding the system to account for medical error, or even medical malpractice is notoriously difficult in Canada. Is it particularly ethical that a person wanting cosmetic surgery likely faces a much shorter wait time than a person in need of pelvic floor repair? Is it particularly ethical that a consumer who buys a faulty car likely has more recourse than a victim of medical error?

Second, by making doctors accountable for system sustainability it puts doctors in an unenviable position of being in a conflict of interest when it comes to the best interests of individual patients versus the best interests of the system. Doctors need to be able to focus on the needs of their patients without worrying about the needs of a system.

Third, a single-payer system often results in an arbitrary violation of an individual’s right to medical autonomy. Rather than a person being in charge of what is done, and when, the system determines which choices are available and controls access. If a service is medically necessary, an individual is at the mercy of the system and the system’s assessment of the importance of the condition and accessing treatment. The system assumes (wrongly) that all individuals affected by a condition are impacted in the same way and fails to adequately reflect the wide variety of circumstances that individuals contend with. Further, because of the political nature of a single payer health system, conditions that have a high degree of stigma, or that affect few individuals may have a difficult time jockeying for a fair share of the resources needed. Is it particularly ethical to withhold access to treatment options and care, when the resources are available (upwards of 16 percent of specialists in Canada are unemployed, and more are likely under-employed), simply because public tax money is unavailable, but private resources are available? Is it particularly ethical to deny an individual the right to make medical decisions for themselves, because those decisions do not conform to the decisions the average taxpayer would make?

It is perhaps important to remember that politicians are not always renowned for their ethics, and it is an egregious assumption to declare that doctors are willing to abandon their ethics in favor of profit in a private system.

Wednesday, August 27, 2014

The Fine Art of Feedback - A Lesson for Fraser Health

Feedback is a gift - those who provide it are being brave in doing so, they are providing an insight into not only want went wrong (or conversely well) but how to do better in the future. It's not easy to tell someone else or an organization that they failed you. When a person provides feedback, they do so in the hope that someone else will not be failed in the same way. They do so in the hope that by being open - by exposing themselves, that they can affect positive change. They do so in the hope that their words do not fall on deaf ears.

The easy thing to do, is to defend against the criticism. People and organizations receive feedback as a threat - a threat to their viewpoint. Further, it is difficult to admit that what was done or not done caused real harm to another person. It is difficult to admit that change is neccessary. Particularly difficult when the organization or individual is heavily invested in their point of view or way of doing things.

This past week, Fraser Health got the gift of feedback. The articles, on Today's Parent, and iVillage and comments on those articles are a treasure trove of information that can be used to do better - to provide quality care to all moms, to learn.

However, rather than take the gift as an opportunity to do better, to initiate changes to better serve moms, Fraser Health took the easy way out in their response. Which basically reads like - the choice is yours as long as your choice is the same one we'd make for you, which is to breastfeed, unless it's absolutely not a physical possibility.

So what's the problem?

The problem is that the health and well being of ALL women at a time of exceptional health vulnerability (not just physical health vulnerability, but also mental health vulnerability) needs to be supported. The problem is that a health authority can not just say that they are available to support the needs of those who make the choices they deem to be the 'right' choices. A health authority can not just substitute ideology for quality care and neglect the needs of those who either cannot or choose not to breast feed. The problem is that the right to do what one pleases with ones' own body is sacred and that those choices need to be made out of free will, not coercion.

The problem is that health care provision should never come with a big heaping helping of unjustified guilt and shame, as that generates stigma and undermines quality care.

So what would be the right response, in this situation? How could Fraser Health make the most of the gift of feedback that they've been given?

The right response would be to acknowledge that real harm has resulted from the policy - harm that Fraser Health is committed to remediating. The right response would be to include those who have been brave enough to call out Fraser Health in it's approach to new moms to develop a new approach to infant feeding. The right response would be to develop an infant feeding strategy that treats grown women, new mothers, like adults and respects their right to decide what to do with their own bodies. The right response would be to commit to support all women in the provision of quality healthcare during pregnancy, childbirth, and the year post-partum and to encourage feedback, and to use that feedback to do better.

Fraser Health via twitter has indicated that they are reviewing and would like to talk and has asked for my contact information.

I am hopeful they are now willing to listen, and will ultimately find their way to doing the right thing.

Tuesday, August 26, 2014

Infant Feeding Declarations: A Violation of Quality Care

Quality care begins with an unwavering commitment to meeting the needs of patients by providing informed consent and collaborating on care plans in a spirit of shared decision making. That means working with patients to understand what matters to them, it means providing the benefits and risks of the options available, and it means respecting their decisions. Stigmatizing certain decisions does nothing to promote health and well-being of any patient – including mothers.

As such, it is disturbing to see quality care take a back seat for some new mothers in British Columbia as health authorities fail to support all new moms in what is perhaps one of the most health challenging times of their lives. Specifically, the “Infant Feeding Declaration” that is being hoisted upon women is a reprehensible violation of the duty owed to these women as patients, a duty to provide the care that best meets the needs of mothers and their babies, a duty to provide informed consent, and a duty to foster shared decision making.

In the “Infant Feeding Declaration” women are told of the benefits of breastfeeding and the risks of formula feeding. Further, they are asked to make a promise about their future actions regardless of the circumstances they might ultimately face. Imagine being told that by feeding formula you are providing your child with less than the best start in life – and the additional guilt that is brought on by the feeling that you “broke a promise”. Imagine the stigma associated with even admitting that you happened to use formula.

How does any of that contribute to good care?

Frankly, Fraser Health, and any other health authority in British Columbia or elsewhere deserves to be told that treating patients in this way – new mothers, grown women- is wrong and needs to end. All mothers deserve support as they begin motherhood - all new mothers and their babies deserve informed consent and shared decision making. All new mothers deserve to feel that they can be honest about how they feed their children with their care providers – and that means health authorities should provide care and hold the judgement.

I encourage you to tweet (@FraserHealth) or email them and let them know you think they’ve gone to far. Demand better!

Monday, August 25, 2014

The Irony of Insisting That "Patients Must Demand Better Care"

Ever read the statistics on Malpractice suits in Canada? Maybe peruse the reports from the BC Patient Care Quality Office? Read up on the incidence of medical error? Maybe you have read the latest Commonwealth Fund report on healthcare in Canada – you know the one that places Canada second to dead last among OECD countries in terms of health system performance? Are you at all familiar with who the patients who use the health system actually are? Are you familiar with how the system is structured?

There are those who insist that patients are the ones who should be responsible for changing the healthcare system – that patients should demand better care. It is a shame that those who take this stance have not really given much thought to the reality of being a patient. It is a shame that they seem to have neglected that it is one thing to “Demand Better Care” and quite another to have the demand that is made, heard and then actually result in “Better Care”. It is a harsh truth that there are patients who have been “Demanding Better Care” – in whatever ways they can – but that many of these patients find that their demands are met with the same indifference that the demands of a toddler asking for a non-existent popsicle are met with.

It is all well and good to think that patients should have the ability to demand better care, and that those demands should result in meaningful and positive change. But the reality is that the system is designed in such a way, that the patients are the people ‘in the system’ whose voices are least likely to be heard but who are impacted most when the system fails.

Think about it – think about the resources at the disposal of the government. Think about the organization of doctors, nurses and healthcare providers. Think about the knowledge of “the system” that these other parties to the system have. Think about the levers available to affect change in the system – and exactly how few of them are available to patients. Now think about the reality of facing a health challenge – and then having the burden of “Demanding Better Care” hoisted upon your shoulders when you are at the mercy of the system.

As it currently stands, patients in Canada are in a position where they have tremendous potential to affect meaningful change, but until those who are in control of the system meaningfully empower patients to affect that change, they remain unable to do what they are being called upon to do.

Thursday, August 21, 2014

Imagine Being Unable to Read - Save Literacy Victoria!

This morning I was shocked to hear that the only free resource for adults with literacy challenges in Victoria is going to be closing its doors as of August 31 due to a lack of funding. This is a tragedy in the making - and if it can be averted, it should be.

Imagine for a moment what it would be like to try to cope in today's world without an adequate level of literacy. Imagine being unable to apply on the vast majority of jobs. Imagine being unable to read and understand the directions on your medication. Imagine being unable to understand the directions to prepare your food, or that of someone you love. Imagine being unable to access the assistance available to you because you cannot fill out the forms. Imagine trying to be able to vote, but being unable to understand the ballot.

Literacy is a functional, foundational skill that enables and empowers individuals to engage in today's world. Without literacy, the risks of unemployment, poverty, homelessness, and disability increase tremendously. By improving the levels of literacy to those most in need of assistance, the ability of individuals to help themselves is dramatically increased.

In 10 days, Victoria will lose one of its tools (and perhaps one of the most effective ones) in the fight against crime, disability and poverty.

I note that the Literacy Victoria has a donate button on its website - maybe if enough people take action, maybe tragedy can be averted.

News Story: http://www.cfax1070.com/News/Top-Stories/Literacy-Victoria-forced-to-suspend-activities Literacy Victoria website http://www.literacyvictoria.ca/

Wednesday, August 20, 2014

Bad Evidence Drives Bad Decisions and Bad Policy

There is a saying: “Bad evidence drives bad decisions.” Unfortunately there appears to be growing mountains of bad evidence (or misinterpreted evidence) when it comes to maternity care, and that bad evidence is being fed into bad policy that then results in bad practice and ultimately moms and babies who suffer. Sadly, some of the bad evidence is likely a result of a backwards cycle of evidence and policy where by a policy is developed based on ideology or theory, and then evidence is sought out to support the policy or practice after the fact.

It’s a logic (and arguably ethics) fail of elephantine proportions.

A failure that has yet again been demonstrated in yet another study, widely reported by the BBC: http://www.bbc.com/news/health-28851441 – this time finding that breastfeeding cuts depression risk.

The first big red flag – the thing that should cause policy makers and their brethren pause for thought is the real finding of this study (as opposed to the trumpeted headline) – which is the following: There is a large increase in the risk of depression in women planning to breastfeed who are then unable to do so.

Think about that for a moment, women who successfully breastfeed, who manage to fulfill their objective are seen to have a lower risk of depression (50 percent decrease in risk), while those who plan on, but ultimately find that they cannot, for whatever reason – suffer a large increase in risk of post-natal depression. It is remarkably similar to a recent study that found that women who had births that were unlike the births that they had ‘planned’ were at increased risk for post-natal depression.

So what are the policy implications of this study?

In the news article, the conclusion is drawn that mothers should be encouraged to breastfeed and that there are so many benefits, and that more support to breastfeed is needed, but those who “fail” should be identified as being at risk and health visitors should keep an “eye” on those women.

So in short, the policy response to this study is to keep doing what is likely causing the observed relationship between breastfeeding and depression. Applaud and support the “good mothers” who breastfeed, and further stigmatize those who either choose not to or find that they are unable to breastfeed.

I am dumb founded at the sheer lack of insight as to what ought to be done in response to this study. It seems incredibly clear to me that the right policy response, is to build resilience among all expectant mothers as many might find that for whatever reason they are either not wanting to or not able to breastfeed and by supporting them in the choices that best meet their needs and those of their babies. That would mean toning down the incredible amount of pro-breastfeeding/anti-formula propaganda that mothers are exposed to. That means sending different messages about the meaning of being a “good mother” – messages that focus on outcomes, not process and contribute to a feeling of confidence in what is to many a challenging and difficult new role.

Monday, August 18, 2014

Culture Eats Strategy for Breakfast, Even in Healthcare

If strategy alone were adequate, there would be no waits for healthcare, there would be no unmet health needs, there would be no waste. If strategy alone could solve the problems that are being faced, it would have already done so. There has been no shortage of strategy - indeed there are entire government branches and divisions dedicated to "planning" in the healthcare sector. As such, you will have to forgive my cynicism and skepticism with respect to the idea that a Seniors' Strategy alone will be enough to navigate through the coming decades of healthcare challenges. Further, there is part of me that thinks that yet again, the generation before me (boomers) is lobbying loud and hard to reallocate resources to its own interests and perhaps away from the interests of the generations that follow.

After much thought, I have come to the conclusion, that the biggest problem in healthcare is not strategic - but rather cultural in nature. The culture of the healthcare system is anachronistic. It is bureaucratic and resistant to change and innovation. The culture of the healthcare system is hierarchical with a clear "chain of command" - it has evolved into difficult to break silos. The culture of healthcare is to view the current organization of healthcare (a public monopoly on the funding and administration of medically necessary services) in Canada as being sacrosanct. The culture of healthcare disempowers patients, seeing patients as a demand on the system, rather than a potential resource. In large part the culture of healthcare also disempowers those who work within the system. The current culture, is very much so focussed on delivering a system that minimizes the expense to taxpayers.

The trouble is, that the culture of healthcare, itself, is not sustainable.

Further, this cultural sustainability problem is likely a far bigger problem than (and maybe the cause of) the financial sustainability problem.

If an organization cannot engage and innovate – how can it reach the limits of its potential? If an organization drives away, or causes its best and brightest to burn out – how can it reach the limits of its potential? If an organization cannot tolerate a diversity of viewpoints and perspectives – how can it reach the limits of its potential? If an organization cannot adequately identify the needs of those it serves – if it cannot listen (and hear) what they (patients) need – how can it reach the limits of its potential? If an organization is unwilling to identify its weaknesses, and to be accountable for them – how can it reach the limits of its potential? If an organization, allows resources, to go untapped – how can it reach the limits of its potential? If an organization is focussed on process, rather than meaningful outcomes – how can it reach its potential?

It is a near certainty, that if a “Seniors’ Strategy” is developed - the dollars to fund the strategy will follow, but it is less clear whether or not the strategy will actually solve the problems that it is intended to tackle. It very well may be just another strategy on the mountain of strategies – that fails to meet its potential because it will be strangled by the culture of healthcare.

Indeed, culture eats strategy for breakfast, even in healthcare.

Note: Musings here have been inspired by Dan Pontefract's Flat Army: Creating a Connected and Engaged Organization, particularly as they apply to healthcare organizations and more broadly the healthcare system.

Wednesday, August 13, 2014

Moving Ahead by Turning Back Time

Out of a certain economic need, there was about a year, now more than a decade ago, that I spent as a freelance economic consultant. I set up a small home office and set about networking to get contracts with slightly larger and more established firms. I had just finished my Masters degree and had limited experience, and yet I was able to pay the bills (albeit much smaller back then), undertake interesting work, and develop my skills.

However, there was a fair bit of uncertainty – you never knew when you would go through a dry spell and there would be no work to undertake, and being young and wanting to get established, there were several advantages to securing traditional employment. After all, getting a mortgage as a self-employed person can be daunting - and maternity leave for the self-employed is pretty much unheard of. Further, employment under the right circumstances could offer a kind of camaraderie and mentorship that is difficult in solo-practice. At the time I was offered the job with the Vital Statistics Agency in Victoria, the firm that I was primarily sub-contracting with in Vancouver was also ready to offer me a position. At that time, a government position in Victoria, seemed as though it would be the better choice for the foreseeable future – less traffic, cheaper houses, and the much coveted “government pension”.

I was lucky, the person who I worked with was bright and engaging – and fed me a steady diet of interesting work for years to come. He exemplified the kind of leader that inspires those he works with to do good work, the kind of leader who knew the skills of his people and leveraged them to their best use. The kind of leader who was adept at getting interesting work to do, sharing that work with others, and doing what he could to make the work of others better. A leader who embraced innovation, collaboration and communication – he took leadership seriously, it was not something done off of the side of his desk but was part of who he was, a way of life. Under his leadership, our group was reorganized into the main Ministry of Health, grew to the size of a branch and the scope of work was broadened. There was no fear of approaching him with a workplace problem – his door was open and he had invested the time to develop the relationships in the first place, he was not just empathetic but compassionate and did what he could to solve the workplace problems of others. Under his leadership our work group had some of the highest engagement scores in government. The years that followed were productive and largely happy.

It was truly a good place to work, a place with a soul, with a purpose, and a community.

Then there was a scandal – but the group survived. Then I went off on my first maternity leave. The experience of the birth of my daughter reverberated throughout the rest of my life – and was still having large impacts on myself when I returned to work. Then, shortly before my second maternity leave – our leader moved on to the next chapter of his career. I went on my second maternity leave in August, and another scandal broke in September. The following January, one of those involved in the scandal committed suicide. When I returned the following September, although I inhabited the exact same office – it was not the same place. In the time since the birth of my daughter, the workplace had transformed.

So now I can either work towards regaining what once was where I’m at, in the ways that I can (not convinced this is possible, given recent evidence of an incompatible culture); live with the way things are (unsustainable) – probably a recipe for depression, poor productivity and frustration; move on to another position in government and hope for a better place – but this would likely mean leaving health behind; or I can take a leap into a new direction – into a new context where the work I do is better aligned with who I am.

If I had the skills and experience (and Twitter, and LinkedIn and Facebook, etc.) that I have today, ten years ago – there is no doubt in my mind that I would opt to be a master of my own work environment – a fully collaborative partner in the work I do and how I do it. In truth, even while employed, I have been lucky to be a fully collaborative partner in the work I have done for most of my career. Perhaps to move forward, perhaps in my journey to strive for better – perhaps it is time to turn back the clock when I step into the next chapter of my work life.

Monday, August 11, 2014

Public Health Challenges Require Compassion and Understanding, Not Shame

The health challenges that result from obesity are significant – it increases a wide range of risks and makes medical treatment more complicated. There is a reason why doctors are concerned when their patients are at an unhealthy weight – because, obesity is often a pre-cursor to poor health and may result in poorer outcomes from medical procedures and health challenges (like pregnancy).

The following video from the Huffington Post, shows an obese patient in an ER after suffering a heart attack – the patient is 32, 5’9” and 300 pounds, and the doctor asks “How the hell does that happen?”. The video then rewinds on the man’s life, and shows a litany of what people assume about the obese. Birthday cakes, candy rewards and cheeseburgers, and driving and fast food, and video games, etc. It ends with the mother of the man feeding him as a toddler, some French fries.

This leaves the viewer with the distinct idea that the mother set her child on a journey that ultimately resulted in his death, and that the man was to blame for his eventual fate. It even leaves the impression, that somehow the occasional treat (ie. birthday cake, and suckers for school performance) are unhealthy. I’m somewhat surprised that it doesn’t trot out a can of formula with the rest of the cliché about overweight and obesity and mother blame. It is simple – and it validates the judgement that many seem more than willing to pass on those who struggle with their weight. Further, it justifies the feeling that those who do not struggle with their weight have somehow made the “right” choices, rather than merely being the beneficiaries of the “right” environment.

This neglects the reality of the problem – and propagates the assumptions and myths about those who are obese. It justifies judgment and limits the capacity for compassion and understanding that are really needed to address the problem and strive for a healthier future. In truth, the Huffington Post video is about as helpful in understanding the problem of obesity and the health challenges it presents as an airbrushed picture of a super model is in forming a fair standard by which to judge one’s own self.

It is far easier to tell the obese to exercise more and eat less, than to take a step back to try to understand their lives and the context in which they live, and working with them and empowering them to work towards a healthier future. It is far easier to blame mothers, than to build parks and communities that support families in a healthy lifestyle. It is far easier to assume that a person is fat because they are lazy and without will power, than to understand that their obesity is a symptom of another underlying health problem – after all having a bum knee might make going for a walk a challenge, and the wait to access care might further add to their waste line, or perhaps they are taking a medication that results in weight gain or are struggling with depression. It is easy to criticize a person who drives everywhere – and far more challenging to understand why they must drive in the first place (houses are cheap in the suburbs, they travel with small children, etc.). It is difficult to understand, that for some obesity is an occupational hazard. It is easy to make assumptions about people and why they do what they do, and it is far more difficult to actually understand the lives of people, and the kinds of things that actually make a difference to the outcome.

Shame rarely causes change – but it is highly effective in generating stigma, and stigma rarely results in good health. If we want to tackle obesity (or any other public health challenge), we need to start with compassion and understanding. We need to start by doing what is perhaps most difficult, accepting people for who they are and that means empowering them and accepting their choices even if they are different from our own. It means changing the context in which choices are made in the first place.

Thursday, July 31, 2014

Patients: the Secret Sauce in Healthcare

The healthcare system is complex. It is doctors and nurses and a whole cadre of other healthcare professionals. It is hospitals and clincs. It is long term care facilities and assisted living homes. It is Ministries of Health and a whole web of policies and academics. It is technology and procedures and pharmaceuticals. It is an eco-system unto itself.

A lot of thought has gone into what the health system is, and what is spent on it. A lot of thought has been given to how it works, and what it produces.

Sometimes it seems though that for all the thinking, for all the measuring and analysis, for all the policies and resources that go into the "health system", all the lip-service paid to "patient-centred care" that we have managed to miss the really big picture in two very important ways.

First, I think the health system has lost sight of the ultimate goal - the improvement of the population's level of actual health. The enhancement of well-being, relief from suffering, disease and disability.

Second, I think the system will continue to fail to meet it's real goal until it takes a fresh approach to how patients are viewed in the system and it takes meaningful steps that reflect the new approach.

The traditional view of patients in the healthcare system is "as products", patients enter the system and have things done to them at the advice of their doctors and as a result of those things done they either get better (or don't). The traditional view of the patient by the system seems not to care (and may even prefer) a disengaged patient, a patient that is not an active participant in their care but rather a passive receipient. This view of the patient works well under a system that views as products procedures completed, visits completed and might be sufficient in a system that focuses and addreses acute care needs with limited treatment options. It is similar to an appliance repair business that handles discrete problems and then moves on to the next discrete problem. However, there have been some rather large shifts that have made the traditional view of the patient very anachronistic.

Patients are not like cars or televisions, they cannot be viewed as an "end product" of the system or even as having needs that are strictly "discrete". Further, the patients of tomorrow, the ones that are going to be hitting the system hard in the years to come (Boomers, X's, Y's, Millenials, etc.), are socially very different from their predecessors. They have been challenging authority for decades. They are connected and educated. They refuse, in many ways, to be cogs in a system. They value different things and see themselves in different ways. In many ways expect the changes that have been observed in modern high-performance workplaces and education systems, to be carried forward into the healthcare system as the users of that system change.

As much as the system needs to view patients in a fresh way, patients will demand to be viewed in that new way.

The fresh approach to "patients" (and by extension their informal caregivers) in the healthcare system is to view them as having a role and an importance that is paramount to doctors, to nurses, to hospitals, to technology, to drugs. It is an acceptance of the fact that much of the "productivity" of health care, the ability of health services to result in meaningful improvements in health and reduction of suffering and disability relies critically on what patients choose to do or not do.

It is a transformative shift in perspective, that when taken seriously has tremendous potential to take the health system and what it can do to the next level. It is a shift that empowers patients to make decisions that have meaningful impacts. It is a shift that recognizes that care capacity is not limited to resources within the system. It is a shift that recognizes that patients want information, want to collect information, want to analyze information, and want to act on the information they have (this means very much so that the public in general and patients in particular will both want and need to use performance indicators of the health system to inform decisions). It is a shift that transforms the patient from an object to which things are done and recognizes the patient as person, with thoughts, with responsibilities, with rights.

It is a shift that opens up a whole new world of potential to increase the productivity of the system.

Tuesday, July 29, 2014

Mudita (Joy in Other People's Joy)

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

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

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

July 25, 2014

Hi Janice,

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

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

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

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

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

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

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

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

Monday, July 28, 2014

The Days and Weeks that Don't Count

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

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

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

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

Friday, July 25, 2014

The Value of Unused Bandaids

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

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

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

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

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

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

Wednesday, July 23, 2014

The Shift to Appropriateness in the Hunt for Healthcare Savings

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

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

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

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

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

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

It is policy with good intentions.

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

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

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

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

Friday, July 18, 2014

I Need to Vent

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

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

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

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

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

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

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