Addressing the Lack of Confidence, Trust and Empowerment in the Newfoundland and Labrador Healthcare System

Anyone who has lived a significant amount of time in Newfoundland and Labrador (henceforth NL) is likely to have at least one distressing, if not tragic, story about their own experience (or the experience of a loved one) with the healthcare system in this province. Sadly, most of these stories involve pain and agony, both in the immediate, temporary sense and the long-term, fatal sense.

The table below, provided by CARE, shows the provincial situation to be particularly jarring:

So, NL'ers go to doctors more, yet also live much unhealthier and have more general health problems in comparison with the Canadian average. Frequent doctor visits seems to relate to a cultural issue surrounding healthcare in the province. For example, Professor at the MUN School of Medicine and kidney specialist Pat Parfrey has argued on multiple occasions that a large percentage -- up to one fifth -- of NL's healthcare budget is misused on unnecessary tests, prescriptions and procedures. In his presentations, he often focuses on the problematic culture of patients demanding unnecessary tests in the province. Dr. Pafrey accordingly is a clinical leader of the initiatives "Quality of Care NL" and "Choosing Wisely NL."

Furthermore, the Head of MUN Economics Department Wade Locke has repeatedly called for a Royal Commission to review the provincial health care system -- especially since he views short-term elections politics as often standing in the way of significant changes in this regard.

Last week, on March 7, 2018, CARE hosted a "Forum on health outcomes and healthcare costs: What Can We Afford?" at Memorial University. All the presentations from the forum can be viewed here. The increase of salaries in the healthcare sector of the province and an increase in the pharmaceutical costs represent a particular financial burden on the NL healthcare system, which has to face the consistent battle of treating a quickly aging population.

A fact that now practically goes without mentioning is that NL spends more per capita on health care than every other province in Canada, and healthcare represents the largest program of government expenditure in NL. Yet healthcare services and treatment in the province do not seem to improve. 

While I couldn't find data for NL Emergency Room wait times, recent data for the wait times in all of Canada for 'medically necessary treatment' is available. In late 2017, it was reported that "Canadian patients face a median wait time of 21.2 weeks for medically necessary treatment -- the longest ever recorded in more than two decades of tracking." In this regard, NL is far from the worst of the Canadian provinces, and is pretty much exactly on par with the Canadian median.

I emphasize Emergency Room wait times because in my own personal history, along with that of my family, it is in the Health Sciences Emergency room that hours and hours of pain and screams of helplessness have fallen on deaf (busy) ears. In the hallway behind the emergency room, a family member recently sat in a wheelchair unattended for 15 to 20 minutes after just having a heart attack, not knowing if he would be admitted. Moreover, I have also witnessed friends and family suffer through agnizing hours in the Emergency Department at the Health Sciences with unbearable pain from kidney stones and emaciated with stomach flus wait up to eight hours to be seen by a doctor.

There are plenty of related issues that need to be considered in the context of any potential analysis of ER wait times in NL. For example, positive steps towards a solution to this problem could be an increase in ER nurses, and an increase the access and availability of family doctors. If people have to wait over a week to see their family doctor when they have a stomach flu, they are more likely than not to visit the ER. Moreover, the insufficiency of the status quo regarding treatment for mental health issues in the province has been widely reported. I haven't heard much of a discussion about Newfoundlanders and Labradorians visiting family doctors in lieu of psychologists and psychiatrists to discuss recurring mental health challenges, but I've definitely seen it happen. 

Certainly, there are many better qualified people than me who could speak to the shortcomings of the NL healthcare system, their sources, and their relationship to NL's healthcare expenditure. But we all have our own personal stories about our interaction with the healthcare system this province that we've recounted over and over -- and in those stories, I cannot help but detect a powerlessness of the people of this province towards a system that they pay for, yet is failing them.

And honestly, this powerlessness is not unique to the healthcare sector. But this is not the time to discuss the failure of institutions to account for and incorporate the concerns of the citizens of NL in the decision-making processes of, for example, large-scale energy projects. That analysis would get us too far off track. Nevertheless, I do want to note that the scale of this problem in the province reaches far beyond health issues alone.

Economists and doctors in the province do not shy away from identifying a connection between our health care challenges are the public health culture of the province. My concern is that these analyses may focus too much on condemning the behaviours of individuals in the province (we all know we are the fattest province, for example) -- and then accompany this scolding with certain propositions for modest institutional reform (e.g. more community based facilities and less acute care hospitals, to quote something from Dr. Parfrey's presentation on March 7th) -- rather than devising a strategy to increase public confidence in the system and its doctors and nurses.

From my experience, and in view of the incidents reported by some of my friends and family, it seems that there is a general lack of confidence, honestly, and disclosure in the healthcare system as experienced by Newfoundlanders and Labradorians. For example, could the now well-documented problem, focused on by Dr. Parfrey, that patients in NL demand too many 'unnecessary tests' be linked with a lack of trust in doctors to order all the necessary tests for their ill patients without being pushed to do so? 

Furthermore, let's not underestimate how many of our judgments on the healthcare system come a posteriori, i.e. one often realizes that something was seriously wrong with one's treatment only after the fact. For example, I had an ACL (knee ligament) replacement and meniscus repair completed here in NL about six years ago. The fact that between the initial rugby injury and the procedure two years had passed is a 'wait time issue' for another blog post. The long and short of it is that the ACL replacement did not hold and I had to have the same surgery repeated in Germany two years later. The surgery in Germany was followed by a physio regimen that included ongoing therapy and observation of my running, cycling, etc. by a physiotherapists for nine months after the operation as a preventative care measure. Alas, the lack of preventative healthcare measures in Canada is also a topic for another piece. What I want to emphasize here is that I did not know that I had a two-inch, metal screw inserted into my knee in NL until the German surgeon removed it two years later, returned it to me in an almost ceremonial gesture, saying "we have not used this method in Germany in twenty years." 

I am not blaming any individual doctor(s) or surgeon(s) in this case. The issues I want to highlight are systemic and cultural. And why would doctors perform full disclosure to their patients if the system is overburdened and does not have the resources to provide the best -- or even sufficient -- treatments possible?

Again, now is not the place for a defence of a two-tier healthcare system, but its potential benefits are worth the consideration by any disgruntled Canadian who has doubts about whether they are receiving sufficient treatment for their health issues. The question of public confidence in the efficiency of the Newfoundland and Labrador health care system was raised for many when the then Premier of the province, Danny Williams, decided to get heart surgery in Miami Beach, Florida, saying "I did not sign away my right to get the best possible health care for myself when I entered politics."

I agree with many of Dr. Parfrey's suggestions presented at the Forum on March 7th, 2018, on how to change the culture of the province towards healthcare, especially when it comes to advocating for an innovative use of technology, changing the way we consider death and dying with dignity (Parfery, rather polemically, asked "Do we have to die with technology?")

Dr. Pat Parfrey's eight proposed solutions to improving health and decreasing spending, taken from his March 7th, 2018, presentation, made available online by CARE:

Dr. Parfrey even goes so far as to gesture towards the lack of confidence people have in the current system by stating that "the reflection of the public [on healthcare] is in proportion to no-shows" (by no-shows he is here referring to the problem of nurse absenteeism). Furthermore, in his anecdote about dementia and dying, he inadvertently acknowledged the possibility of "waiting up to 12 hours in an emergency room," particularly for people who are about to die, in NL. Dr. Parfrey, also rather astutely in my opinion, acknowledged that NL is an "immature society" when it comes to making major decisions.

I checked out the Quality of Care initiative (partnered with Choosing Wisely NL), spearheaded by Dr. Parfrey, and their goals are described as (1) reducing unnecessary care, (2) recommending the right time to test (3) discovering who needs care; in short, they want to get "the right treatment, to the right patient at the right time." Of course I am sympathetic to such an initiative. But the language of empowering citizens during and after the wrong decisions for their health are made by healthcare practitioners -- largely due to the strained, overburdened nature of the public healthcare system -- is missing. In other words: who will hear my story of pain and agony? Who, in a significant position of power, will listen to my story about a horrible, life-threatening experience within the NL healthcare system and incorporate it into the initiative's impetus and project to "(1) reduce unnecessary care, (2) recommend the right time to test (3) discover who needs care." In short: is there a way the system can be improved based on patient testaments of how wrong things have gone for them?

I want to finish this post with an anecdote that happened to a close family member this week to illustrate what I am talking about. This family member (like most of my family) has been dealing with genetic heart problems for the past thirty years. He had stents put in two and a half years ago to increase blood flow to his heart after suffering a mild heart attack, but he (60 year old male) was sent home after the procedure, even though he still could not walk ten metres without having acute pain upon discharge. During the next two and a half years, he progressively could do less and less (e.g. he was unable to walk up one flight of stairs) and was spraying nitroglycerin under his tongue regularly to alleviate chest pain. His family doctor was aware of this, but this was not sufficient criteria for him to be admitted to hospital or to have another bypass surgery (he had triple bypass heart surgery in 1997).

This Monday night he had another mild heart attack and was rushed to the hospital. He waited in the ER in a wheelchair unattended and panicked for 15 to 20 minutes as mentioned above. He was given morphine and an anti-anxiety pill in combination with each other to alleviate the pain overnight, which caused him to hallucinate and have repeated anxiety attacks. Wednesday he had a dye test in the cath lab, during which time he had three more stents put in to fix one of his many 100% artery blockages. This actually worked to stop the acute pain, but it nevertheless remains a temporary solution.

The real issues in his case concern inadequate communication surrounding prescription drugs (pharmaceuticals were acknowledged by Provincial Health Minister Dr. John Haggie during the March 7th Forum as the source of the biggest cost increase in the health sector), a lack of a long-term care plan for his ongoing health problem, insufficient follow-up care, and the inadequate minimal conditions for discharge.

To further illustrate this point; during one night while I waited in hospital with this family member, he was told he was taking Seroquil for the second night in a row. Seroquil had been administered as a sleeping pill which finally worked for him after the aforementioned anxiety attacks due to mixing medications. In order to reduce his dependency on Seroquil, he asked to take half the pill that evening. After an hour or two, the pill did not work at all. So my family member asked the nurse again to verify exactly what the medication was, she checked and then apologized for the mistake -- they had given him Trazodone, an antidepressant, not Seroquil. The nurse then gave my family member half of a Seroquil pill on top of the Trazodone, which itself brought on further anxiety and confusion for the patient concerning the mixing of medications. The wrong information was communicated to him initially, so what would prevent the wrong information from being communicated to him again? How does one get over the worry and paranoia that one is consistently being lied to about what drugs are being put in one's body in such a situation?

Due to an overflow in the Intensive Coronary Care, my family member was then abruptly moved to Medical/Surgical Intensive Care Unit (where most patients were semi-unconscious, emerging from surgery) -- a stressful experience for someone on the mend. He was then provided with a nurse sitting at the foot of his bed at all times, which was subsequently assessed to be unnecessary. Consequently, eventually this nurse no longer attended to him, and because he did not have a buzzer, he could not find anyone in the middle of the night when unable to sleep and required oxygen.

After being admitted to the hospital, undergoing his procedure, and lying down for five days, the patient was released from hospital without any monitoring or tests while walking or moving. He was, however, given a clear chart with his medications listed on it, including two new medications, with the times specified when he was to take each pill. One very important drug was missing from the list -- a beta blocker that my family member had been taking for twenty years. In his words, "it would be fatal for me to stop this drug abruptly, so I figured out the problem myself and called the Health Sciences Centre. If I was an elderly person with nobody, I may have assumed they discontinued the drug and could have died."

This patient is thus now left with the feeling of not having the right to know or to be informed by the practitioners of the healthcare system, the sentiment of being shuffled around and rushed out the door, zero follow-up care, and, in his hands, a cartoon-like image that shows he has numerous 100% artery blockages and no ongoing plan to deal with them. 

So what am I telling him regarding how to take charge of his health?

Go to Germany. 

My experience with the system there is an emphasis on patient disclosure and comprehension and a focus on follow-up care. Again, I do not blame the doctors and nurses for the problems with the NL healthcare system. But I also fear that initiatives to improve the NL healthcare system do not place enough weight on the lack of confidence people have in the system, the pain and agony that mark their stories, and the fact that their stories are not heard. 

My question for Dr. Parfrey would thus be whether Quality of Care NL and Choosing Wisely NL have an avenue to qualitatively assess the perception and experiences of people with severe health problems of the system, and thus incorporate these assessments into the recommendations on how to change the system? If, as Steve Gillingham, President of the Pharmacists' Association of Newfoundland and Labrdor suggests, there is indeed a public problem that, "people often mix up medications or fail to follow the directions with their prescriptions" and multiple health care providers note that patients are "unable to tell them what medications they were taking and why, even when holding their pill bottles or prescriptions in hand," should part of the solution not lie in providing proper communication of information to patients, rather than implying that the blame lies on individuals unable to follow directions and take initiatives with their health?

Maybe if patients were clearly explained what they are taking and why, and had sufficient follow-up care for their ongoing health problems, they would be more responsible with their medication practices. Instead, the culture surrounding healthcare in NL, is, as far as I can see it, is one of patients feeling memorized, waiting alone in worry and pain (whether at home or in an Emergency Room), and then rushed out the door with minimal information and follow-up once they do receive some level of healthcare. There also seems to be a lack of adequate avenues to report negligent behaviour and difficult experiences with the system.

As par for the course in NL, the institutions and elites seem to belittle citizens and make decisions on their behalf without informing them. And therein lies where I think the culture change must take place.