HEALTHCARE REFLECTIONS FROM A PATIENT

I have spent more than my fair share of time in Alberta’s Health care system. 2 chronic illnesses managed for over a decade that led to 4 major surgeries, plus some sports injuries, emergency room visits, and a child being born in hospital have left me with some things to say about our health system. I have had almost every type of test that exists, outpatient IV therapy, home care, consulted with 5 or 6 different types of specialists, etc. I have a lot of taxes to pay to break even I think. I have tried to prioritize and summarize my thoughts here to contribute to the conversation I believe we need to have about how to protect and improve our public health care system.

The Lucky Ones

The first thing I always say when talking about my health and health care is I feel very lucky. Yes, there is room to improve, but we have an amazing health system: competent compassionate professionals from reception and food services to nurses and doctors and everywhere in between. It takes a unique set of values and skills to successfully pursue a career in our health system and we are extremely fortunate to have an incredible supply of the incredible people that make the system work. Thank you to everyone who works in and defends our system, you/we have a lot to be proud of!

We are also blessed with access to top-notch facilities and equipment. I would almost certainly not be here writing this (or my entire family and I would be bankrupt) if I was one of the majority of humanity that are not blessed with access to high quality publicly funded care. I do not take this blessing lightly.

Define success

There is always a lot of talk about the cost of healthcare, and the length of time people wait in emergency rooms or for surgery, etc. These are important topics but we should be careful not to confuse them with metrics of whether our system is succeeding or failing or what may need to change. Cost or wait times in and of themselves are not measures of success. There are many things that impact the cost of healthcare: demographics, water and air quality, obesity levels, etc. While cost is obviously key for the people paying the bills (all of us) I am more concerned with whether we are getting a quality service for our investment.

While I am a strong advocate of publicly funded and publicly delivered healthcare, sometimes a private system provides a good thought experiment when considering cost. In a private system there would often be a spectrum of quality that comes at different prices and most of us would spend as much as we could reasonably afford to get the best quality care. I would pay a premium in a private system for access to competent compassionate health professionals, and I am happy to do the same in our public system. Similarly with wait times, I choose to go to a family doctor that is exceptional in her intelligence, judgement and compassion, even though she is almost always late. I would of course prefer her to be on time, but I am not willing to switch to a doctor I trust less even if it would mean shorter wait times. In my mind, quality trumps all else, and access to good quality care up front saves time and money through recognizing and addressing issues as they arise, preventing complications and the need for repeat visits.

I define success as the health outcomes of society – life expectancy, maternal and infant mortality, life expectancy of people with various chronic illnesses, and while hard to measure, perhaps most importantly, quality of life. I do not define success by measuring the $/capita relative to other provinces. If we want to compare costs, we should compare cost per quality, and we should recognize that other things drive cost beyond just the number of residents.

Privacy farce

Before going on, I should disclose that many of my opinions and observations are from exchanging and overhearing the health journeys of my roommates or neighbours in the hospital. While I have experienced some beautiful relationships in this way, it is also a major annoyance and liability that there is so little privacy in our health system. We spend so much work protecting private records everywhere else only to be forced to pretend that a thin curtain somehow makes a cone of silence while you share the most intimate and excruciating details of your health history with every nurse and doctor that comes to visit. Depending on the person, this can be a significant barrier to open communication, compromising the quality of care. I feel that when I have had the privilege of having a private room it has allowed me to be more relaxed and open and improved the quality of care and the speed of my recovery. While this does not necessarily mean private rooms for all, in our new facilities and renovations we should find ways to provide space for private conversations between patients and caregivers.

Space

Beyond just privacy, limits on space have very real consequences for care. The University of Alberta hospital currently is giving patients an information sheet explaining that in order to fit people in for surgery they may need to place you on a stretcher as a third person in the middle of a two person room, or in the corridor.

Patients are assured that the quality of care will not be compromised in these situations. I was one of those patients that was in a three person room in January and I can tell you that I still received attention from nurses and doctors as promised but in my opinion their ability to do their job and my ability to recover quickly was hampered by having three person in a two person room. Nurses had trouble moving around the beds and it would not have been possible to provide simultaneous care to all three patients in the room. I was told that in order to recover quickly from surgery I needed to get up walking as many times per day as possible, but since the room was not designed for three people I could not unplug my IV pole to go to the bathroom or leave my room without the help of either my neighbour or a nurse. The privacy concerns where significantly exacerbated by the limited space and we could not all have visitors at the same time, which has significant emotional impacts and limits the quality of care (since visitors are often very helpful for patients in basic things like getting supplies and helping in and out of bed). It also impacts your ability to sleep, which would be much worse in the hallway. Stretchers are also smaller and do not have the ability to adjust without a nurse, which significantly impacts comfort and sleep. I think it is still better that I got in for my surgery than having to wait but it is terrible that the system is so short on space that we are faced with this choice. It is also an issue that snowballs because patients in cramped conditions take longer to recover, infections are more likely, meaning longer stays and less space.

Pharmacare, dental care, access to fitness, wrap around care

I think of some of the health care ‘bells and whistles’ in a similar way as I think of investing in quality for our core health services. I would happily invest in services that improve the quality of care up front and prevent (or at least delay) more intensive, expensive, time consuming options down the road. I think pharmacare is the biggest example of this. In my time in hospital I have overheard multiple cases where people’s health conditions had gotten much worse than needed due to complications with prescriptions or inability to pay for prescriptions. Given the importance of prescriptions to modern health care, having people pay for prescriptions creates a massive inequality in our system and ultimately often increases the cost of providing care. If I had my ideal system, all health related services that are essential and reduce likelihood of future complications would be publicly funded. I agree with cosmetic things being private to some extent and in my experience our health professionals and whoever makes the rules have drawn this line in the right place.

When it works…

I had the amazing privilege a few years ago of receiving a donated organ, which has saved my life. Aside from the miracle of life, I cannot say enough about the way the liver transplants are managed. When I was placed on the transplant list I underwent extensive screening but I also had appointments with a nutritionist, a social worker (to offer emotional support and coordinate drug coverage), a pharmacist, and I was assigned to a nurse practitioner who coordinated my care and all my expert appointments. There was some concern about my kidneys and lungs so I met with specialists in each of those areas and an infectious disease expert to ensure I was ready for surgery. Post surgery, I had ongoing support from my nurse practitioner, as well as regular appointments and personalized recovery planning from a physiotherapist and occupational therapist. I also had follow-ups from the various specialists and regular check-ins with the liver specialists, and follow up from homecare upon discharge. The fact that all of this care was available as part of the standard procedure and that it was all coordinated through a single competent and compassionate point of contact made a huge difference in my ability to prepare for and recover from surgery. I believe this is a model of how public health care can work. I don’t think any of these supports were frivolous and all focused on getting me back to my regular life as soon as possible.

On a side note, another very important aspect of the transplant system is that it is entirely needs based – whoever needs the donated organ most (and is a good match) gets it, regardless of how long they have been on the list. This prevents gaming of the list and ensures an equitable way of delivering care.

My final comment on transplants is that we are desperately short of life saving organs. I believe that organ donation should be the default that people can opt out of after discussing with their family doctor or a similar health care professional who can explain the need for organs and how everyone might need one for themselves or someone they love.

Emergency rooms as canaries - Emergency rooms are not ready for emergencies

In engineering talk, there is often a tension between efficiency and robustness. A very efficient system will use all parts to their maximum capacity, but if one thing goes wrong in this system then the whole thing is compromised. If you want a robust system the easiest way is to design in redundancy, especially for the most critical parts (a back up generator, a spare tire, etc). In my experience a lot of effort has been put into making our health system more efficient and getting by on the slimmest margin of funding possible. While efficiency is valuable, I am concerned that our emergency rooms are not actually robust enough to be prepared for a real emergency. We would be concerned if all our fire trucks or police cars were always busy and were having to routinely let smaller emergencies wait for extended periods. I have never seen an empty emergency waiting room or emergency room bed, which is great in terms of making sure the doctor and nurse resources are used completely, but it is also a sign that we do not have robustness in the system to deal with large-scale emergencies.

I am a strong believer in triage and needs based care. If I am waiting in the emergency waiting room I know that people who need care more than me are getting care. But I also see wait times. I’ve also seen people waiting in emergency rooms because they did not have a ride yet, or because they did not have continuing care to transition to (long term care beds, home care, etc). I even witnessed a lady who was having trouble walking without a walker get picked up by an ambulance because there was no after hours mechanism for getting a walker for her. In this sense emergency rooms are often the proverbial ‘canary in a coal mine’ where problems in emergency rooms indicate much larger problems in the system.  Some of these gaps are breakdowns in organization, such as the lack of a walker to borrow leading to an ambulance call. But the waiting times are often indicative of lack of capacity downstream, and because there is no robustness built into the system, a hiccup anywhere in the system causes upsets that propagate through many other parts. Lack of timely emergency care can also lead to more costly and intensive interventions later on. For example, on a recent emergency room visit I was severely dehydrated due to a bowel blockage. Everyone knew that I needed IV fluids as soon as possible, but there was no space so I waited for hours before the IV could be started, and ultimately ended up in the ICU. This incident served as an example to me that while wait times in and of themselves are not necessarily a problem, they are a sign of a problem and can cause significant loss in quality of care and increases in the cost and intensity of care needed.

Data

One of my ongoing frustrations with funding rhetoric is the idea that frontline staff are sacred and protected, but cutting administrative supports and central services will have no impact on frontline staff, and by extension no impact on quality of care. I have tremendous respect and gratitude for the wonderful people that work on the front lines of our health system, but I think it is naïve to think that we could scale back on everything not frontline without affecting care. Many of the opportunities for improvement in the quality and cost effectiveness of our care that I have observed relate to how information is handled. We are still using record keeping and data management systems that are primarily paper based. I believe that our entire charts should be electronically archived and accessible to patients and all of their care professionals. I believe in the need for patient engagement but even as a person with a fairly high functioning memory and intellect I find myself forgetting some aspects of my health history when asked to share it with new health professionals (such as emergency room doctors) and I often worry that this compromises the quality of care.

As an engineer, I also think a lot about data management and quality control and assurance. In particular I think about opportunities for alteration (accidental or malicious) of records. An example is blood work. When I go for blood work, my doctor fills in a pdf checklist, prints it off, and I take it to a clinic where (after waiting for up to an hour in the waiting room), the technician manually re-enters it in a computer. They often struggle to read the doctors name or contact info and over half the appointment is taken up with the tech entering and confirming information. I then have to book a follow up appointment with my doctor a week later to find out the results of my test, even if there is no issue. In my world, the requisition would be on my electronic file, I would book an appointment online or by phone, I would show up and have my health care number entered or my id scanned, and the requisition would be there for the technician. I would then be able to go online. This would cut the time per patient by 50-75% while improving the quality of care and availability of information. This is a minor example, but I believe many such opportunities exist, and could save frontline staff time and let them focus on their core job of patient care. But these opportunities can only be realized if there are some non frontline staff with the skills and time to find and implement innovative solutions.

Incentives and income

One of the things I think we should consider is connecting how we fund and evaluate healthcare. We should quantify the impacts of things like smoking, alcohol, pollution, etc. on health care and collect at least enough revenue from those things to cover their costs. I think an economist would call this internalizing the costs. For example, we could have a tax on sugar that covers the cost of the obesity and diabetes related health problems and costs it creates. 

Communication in the 21^st century

I have been very fortunate to have doctors and specialists and nurse practitioners who are willing to communicate in real time using phone and email in addition to in person appointments. I think this has likely been a stretch of the rules but has been a huge improvement in the quality and efficiency of my care. When I was travelling overseas I was able to email my GI specialist and get professional advice from someone who knew my history and risks when I got sick. This was important physically and emotionally. I think that this should be encouraged and incorporated into the standard care (and funding) model, not to replace appointments but to use in person appointments and doctors time most efficiently. Similarly, I have had the good fortune to have a family doctor and surgeon who are willing to phone me directly and discuss my symptoms in real time instead of waiting for an appointment which reduces the risk of symptoms escalating into complications and more intense sickness.

Teaching Hospitals and peer oversight

I have been very fortunate to have access to the wonderful specialists and facilities at the university of Alberta Hospital. I love being part of a teaching hospital both because if I want quality care I believe that I have to help train the people who will deliver the care. I also think that the quality improves in teaching situations because there are multiple people assessing the problem, asking questions and evaluating the approach. It challenges me to be more engaged and observant too, which I think is important. There have been cases where I have disagreed with the approach taken by a student or resident but I have found them very open to discussing the approach and deferring to the experts if requested. I think this model of peer support and oversight should continue as much as possible throughout our system. It should not be a crisis or confrontation to get a second opinion; it should be a standard part of the process both at the request of the patient and the doctor/health provider. I have had multiple neighbours in the hospital room where a significant contributor to their situation was poor judgement from or oversight of their primary care provider. One person had been on a dose of prednisone for ten years that should have been an introductory dose to see if they tolerated the medicine for one week, followed by a higher short term dose and taper off the drug. The dose they had was not strong enough to help with the disease but was enough to cause other complications and side effects. There is no way that this should have happened in the first place or continued without being caught. There must have been many prescription refill appointments with doctors and pharmacists that filled them over the years.

Why so sexist?

I have seen very few signs of overt sexism or discrimination in our health system, and I have been very happy to have some amazing female doctors and specialists. It seems that we are on our way to gender equality in doctors. For some reason though, male nurses (and nurses assistants and support staff) remain extremely rare and are often in the senior roles. I don’t know what the causes are but I believe that this data should not be ignored (similar to any other profession) and should lead us to examine how students are socialized in school, how universities recruit and carry out their programs, how nursing is portrayed and understood in society, etc. It is not immediately troubling to me, because it seems nurses are well respected and compensated as the highly skilled professionals they are, but it is curious. Any time that such inequality exists there is potential for negative discrimination to go along with it, which we should be cautious of.

The “D” word - Palliative care, living wills, etc.

My final observation is that death still seems to be something that is generally feared and not discussed until absolutely necessary. This is a societal problem (we are terrible at preparing for and grieving loss) but also a health care problem. In the last 3 months I have met two wonderful gentlemen who are nearing their end of life that had recently underwent significant health procedures and extended hospitalizations. Both of these men said “If I knew what I was going in for I would have said no.” I think this is a failure of the people who prepared and informed these people as they evaluated their options, but I think it is also indicative of how the overall system deals with patient agency and preparation for death. I recently heard about a town that has taken a very proactive approach to end of life planning  (http://www.npr.org/blogs/money/2014/02/28/283444163/episode-521-the-town-that-loves-death ). “96 percent of people who die in this small, Midwestern city have specific directions laid out for when they pass.” This was done solely for the purpose of improving the quality of care and supporting patients and families prior to crisis so that when the difficult decisions come people are ready and do not have to try to imagine what their loved one wants. In addition to the clear social benefits, this approach of proactively supporting and guiding people to prepare for the death that is coming for us all has some important benefits for the effectiveness and efficiency of the health system. It provides certainty that we are providing the type of care people want, and it prevents using huge amounts of resources to extend life when a person would rather not go through that ordeal. This is a touchy issue and gets touchier as we start to (finally) talk about doctor assisted suicide, but it is way past time we have an upfront conversation about this and help patients take control of their own care choices. Given the risks of liver transplant I did some pretty intensive preparation for that surgery both personally and with my family. I forced myself to get comfortable with death and to evaluate who should make decisions if I was incapacitated and provide my spouse with enough preparation that she would be able to make informed decisions that we were both comfortable with rather than guessing. We could do a lot more to support and assist people in preparing for intensive care and end of life care situations and I think this would have enormous to individuals, society, and our health care system.

Conclusion

In conclusion, my assessment of our system from my experiences as a patient is that it works, and works well, but there is room for improvement. I don’t think its helpful to only talk about costs, or wait times, we need to talk about health outcomes, quality of care, and quality of life overall. There are definite ways that our system can be improved, and I think engaging the people who experience the system as both care providers and recipients in identifying and implementing solutions can be way more helpful than relying on party platforms and newsbites. Frontline staff do not exist and succeed or fail in isolation, they are part of a system and the whole system needs to work. When one part fails the repercussions can be far reaching so we need to manage it as a system and be willing to identify and even predict challenge areas and invest in comprehensive solutions that will save cost and improve quality, efficiency, and robustness of the overall system. We need to take ownership over our own care, demand quality, and be willing to invest both financially and intellectually in the quality of care we want.