Harvey Max Chochinov

While being treated for an aggressive hematologic cancer, the former Head of a Department of Medicine at a large teaching hospital told me he wished he could hang a sign on his headboard, reading P-I-P: Previously-Important-Person. Despite extraordinary achievements, skills, credentials, and status, being a patient made him feel like an amalgam of parts; limbs, bodily fluids, organs, and orifices, all now suspect, some more wayward than others — and most, for his taste, far too readily on display.

Why is being a patient such a difficult pill to swallow?

Besides whatever concern or ailment brings you to seek medical care, there is something about the very nature of being a patient that deeply rankles. Whether trying to arrange a medical appointment, waiting to be seen in a clinic or hospital, or being examined under the watchful gaze of a healthcare provider, being a patient disrupts our sense of intactness, gnawing away like an existential termite.

At its core is the erosion of personhood and a feeling that identity is under attack, threatening to displace the essence of who we really are. 

It doesn’t have to be this way.

Our sense of who we are as people is highly individualized, based on personal experiences and relationships; affiliations, attitudes, culture, beliefs, abilities; opportunities and connections; inclinations and foibles. In other words, who you are as a person is highly specific and unique; never has there been, nor ever again, will there be one exactly like you. Being a patient, on the other hand, is based entirely on things that are generic.

Bodily parts are supposed to behave in exact and predicable ways, irrespective of who their owner happens to be. With all due respect, whether prince(cess) or pauper, poet or pilot, your bits and bobs are pretty much identical, in form and function, relative to everyone else’s.

And herein lies the problem with being a patient. The moment we enter the healthcare system, the focus of attention shifts from who we are, to the ailment or problem we are now facing. This shift puts identity in jeopardy.

A long-time dialysis nurse once told me she eventually came to think of patients as kidneys on legs. Patienthood eclipses personhood, casting a shadow that undermines the essence of who we are. This is bad for patients and their families; it is also bad for healthcare providers since emotional disconnection and objectification of patients is a harbinger for professional burnout.

One approach designed to decrease this kind of existential trauma is beginning to take hold, coined the Patient Dignity Question (PDQ). The PDQ asks patients, “What do I need to know about you as a person to take the best care of you possible”? This question forms the basis of a brief five-to-ten-minute conversation, focused on personhood. What matters to you? What are your core beliefs? What or who are you most worried about? What roles and relationships matter most?

In answering the PDQ, patients are being asked how they want to be seen or understood as a person by their healthcare team. These conversations are summarized into a few paragraphs, and with the patient’s approval, placed on their medical chart.

While mostly used in patients with serious illness, the PDQ is relevant across all of medicine.

Whether you are being seen for routine medical care, or find yourself moving towards the end of life, or somewhere in between, who you are and acknowledgement of who you are as a person, matters. And the things that people disclose by way of the PDQ profoundly change the way healthcare providers see them. I’m a survivor of childhood abuse. My son is battling cancer. I am afraid to die alone. I am a former department head of medicine.

During the COVID-19 pandemic, the daughter of a women on a ventilator in intensive care shared that her mother had survived the likely murder of her first child and was a spiritual leader in her community. She said that responding to the PDQ gave her a way of letting the healthcare team know that her mother “was no ordinary person.”

These kind of disclosures profoundly and forever change the healthcare provider’s lens, bringing an appreciation of who patients are as persons, above and beyond whatever ailment brought them to medical attention. This is good for healthcare providers, helping stave off emotional indifference that can lead to professional burnout, while restoring human connection with the potential for them to be more whole themselves.

It is also good for patients and families, ensuring that patienthood doesn’t overshadow personhood.

Being a patient is hard, especially when it undermines your feeling that you are still you. That, it turns out, is the hardest pill to swallow of all.

Dr. Harvey Max Chochinov is a distinguished professor of psychiatry at the University of Manitoba, and author of Dignity in Care: The Human Side of Medicine, recently published by Oxford University Press.

Growing up in Southern Ontario in the 2000s, it was rare to see someone smoking. We were very fortunate to enjoy a childhood where our air was mostly free from second-hand cigarette smoke, especially since one of us struggles with asthma. 

Unfortunately, vaping changed all that. As e-cigarettes grew in popularity among our fellow middle and high school students, so did our concerns around these new products. 

A few years ago, e-cigarettes or ‘vapes’ became extremely popular in high school.  They became increasingly accessible and sold in appealing flavors such as Mango Tango and Vanilla. While there’s a mistaken perception among our generation that these products are harmless, many people who started years ago are still vaping to this day and some experience health issues.

Now, around our university campus, we see loads of students vaping, controlled by a habit they didn’t expect would become an addiction. This addiction comes with real consequences, which many young people are already seeing. Vapes can impact breathing, damage lung tissue and increase risk for cardiovascular disease.

Because of what we’ve experienced with our peers — and our resulting worry for the future health of our generation — it is painfully obvious to us that as a society, we should be doing everything in our power to prevent young people from starting down the road of vape addiction.

We believe that our province should do more to keep young Ontarians from starting or continuing to vape.

There’s a simple but effective step for the province to take.  Our government should participate in a federal vaping taxation plan, which would increase the price on e-liquids used for vaping. The federal government has set a vape duty which is in effect already, and this plan also allows the provinces to add their own tax of the same amount.

Research already demonstrates that taxes on harmful products limit consumption because of the rise in price, which discourages use; that means fewer young people becoming addicted to nicotine and vaping.

As university students on limited budgets, we can attest that price matters. A tax can also signal to people that e-cigarettes are not simply harmless “vapourized water” but that they are addictive and carry real health risks.

Eight Canadian provinces have already introduced a vape tax or have signaled interest to opt-in to the federal vape tax collaboration. Ontario and Manitoba are the only provinces to date that have not. The federal government has developed an implementation plan and has structured the tax in such a way that would provide much-needed revenue to the provinces.

We can’t understand why Ontario is delaying or even passing up a plan that not only would improve the health of young Ontarians, but also raise money that can be used to fund important services. Instead, the Government of Ontario seems content to let both the money and young people’s health slip away.

Because of our concerns around vaping and our generation’s health, we decided to co-found the McMaster Cardiovascular and Resuscitation club, an initiative started this year which aims to promote e-cigarette awareness and knowledge, increase CPR and automatic defibrillator training, and support cardiovascular research.

As young people with an interest in healthcare, we want to do everything in our power to help make Ontarians healthier and reduce the demand on the health care system in the long term.

We need the government of Ontario to do the same, and one of the easiest and best places it can start is by joining the federal vape tax program.

We would all then breathe easier.

Bianca Mammarella, third-year Integrated Science concentrating in Biologyand Mika’il Visanji, second-year health science students at McMaster University in Hamilton, Ontario.

Canada’s first Ministers have finally reached an agreement, not only on Canadian health transfer payments, but just as importantly, on strategies to remedy major failings in Canada’s health sector.  These include lack of access to primary care, over-crowded emergency rooms, prohibitive wait-times for surgery, and perhaps the worst record in the OECD for COVID deaths in long term care facilities.

There is another less obvious, but arguably more crucial failing: major shortfalls in collecting, sharing, and making effective use of health data to support health care and public health quality. 

Sharing personal health data immediately raises fears about privacy. Yet, when confronted with this question over a year ago, in the context of the pandemic, Canada’s federal privacy commissioner stated, “during a public health crisis, privacy laws still apply, but they are not a barrier to appropriate information sharing.” The inability to share not only data on the genetics of the evolving waves of COVID-19, but also to connect these waves to something as basic as whether an individual had been vaccinated, has imperiled governments’ capacity to control the pandemic.

“Privacy chill” extends well-beyond the pandemic. 

How can we understand physician and nurse shortages without data on their training, where they are working or why they are relocating or quitting their jobs?  How can we understand if novel “innovations” in health services, such as private for-profit joint replacement facilities, are not luring away publicly financed hospital staff? How can physicians provide competent health services without knowing the health histories of their patients?  These essential tasks require robust and appropriate sharing of personal health data.

These are not new observations. First Ministers’ Health Accords both in 2003/2004 and 2017 included commitments by all jurisdictions to improve health data.  These Accords connected health data to “accountability.”  But this was not accountability by provinces and territories to the federal government; rather it was to their publics.

Unfortunately, these First Ministers’ commitments have largely failed.  Among the reasons are a perception that investing in data takes away from “front line health care,” “short termism” posed by electoral cycles, fears that data sharing and the resulting analyses may reveal embarrassing under-performance, and widespread gaps in health data literacy across the health sector and among the public more generally.

Fortunately, there has been a sea change in attitudes regarding health data since the 2003 and 2017 Health Accords – many more organizations and members of the public have seen, especially as a result of the pandemic, just how important high quality health data and actionable analysis are.   

There is finally some cause for optimism, after decades of reports and recommendations.

The most recent is the report of the Expert Advisory Group on a pan-Canadian Health Data Strategy, which was comprised of diverse experts from across Canada and the health sector. The keystone of the report is the recommendation for a Health Data Charter that can serve as a unifying vision around which all health sector stakeholders, including governments, First Nations Inuit and Metis, health care providers and the public, can frame a common approach to health data design and use. 

Crystalized in 10 concise points, the Health Data Charter starts with the premise that health data should be “person-centric,” with the collective obligation to maximize the health and wellbeing of individuals and populations. While sounding simple, truly person-centric health would dramatically alter Canada’s health data by transforming the current architecture from being largely provider-centric, which too often fragments individuals’ health data between family doctors, hospitals, labs, pharmacies, private clinics, nursing homes and so on.

The foundational importance of health data to the quality and sustainability of Canada’s health care sector is clear. Optimizing Canada’s health data will require a strong harmonized approach centred on the welfare of individual Canadians. 

Following the First Ministers meeting, the various bilateral agreements should all include a common pan-Canadian commitment to cooperation across jurisdictions and specific resourcing for advancing health data transformation. The Health Data Charter provides a clear framework upon which to build such cooperation.Michael Wolfson, PhD, is a former Assistant Chief Statistician at Statistics Canada and an adjunct professor in the faculties of medicine and law at the University of Ottawa. Bartha Maria Knoppers, PhD, JD, OC, OQ is Professor, McGill University; Canada Research Chair in Law and Medicine. Ewan Affleck CM, MDCM, CCFP is a practicing physician and health informatician. All three authors were members of the Expert Advisory Group of the pan-Canadian Health Data Strategy convened by the Public Health Agency of Canada.