portrait of Michele Cardoso

The thing about cancer is…it brings out the best in people

By Michele Cardoso

A letter to my patients

The thing about cancer is …it brings out all the best in people: resilience, courage, hopefulness, compassion, and kindness. It strengthens true friendships and community. When people ask me what I do, I get these pitying looks and they say, “wow that must be depressing” or “how do you do that?” Yes, we have difficult days but truly we see the very best aspects of humanity in the patients we treat.

Coming into Juravinski Cancer Centre (JCC) for the first time is like entering another world, even for a new health care provider. I have never forgotten the overwhelming feeling of shock I felt when I began working here years ago. I was realizing how many people are affected by cancer and how little it is understood by the outside world – those who haven’t experienced it. Yes, treating cancer is challenging. It this is certainly not a job I can leave without a second thought at 5 p.m. but I think that is the same for all staff here. We don’t just care, we care deeply, and we wouldn’t be able to give compassion if it was something we could switch off.

Working in the radiation therapy department, we have the privilege of forging relationships with patients who come daily, sometimes for several weeks of treatment. We share the journey with our patients and in doing so, bear witness to the emotional experience of cancer and do our best to offer support. I’ve always felt very connected to what the patients are going through, to the point that now I can predict some aspects and help patients navigate better than I could years ago. I’ve seen patients reeling from the slap of the new diagnosis, listening to their own inner dialogue as the team explains the how’s and why’s of next steps. I’ve seen patients dealing with side effects of surgery and chemotherapy. Then it sort of slows down during radiation therapy. Perhaps because radiation therapy is so repetitive, and because with modern treatment approaches we can minimize its side effects, this is a time where emotions patients were unable to process earlier in their treatment begin to surface. This is why for us, the relationship with each patient is so important. It allows us to support the patients so much better. The entire JCC team rallies around our patients.

There is no correct way to deal with a diagnosis

I want patients to know that there is more support available within our treatment teams and in the supportive care department. There is no correct way to deal with a diagnosis and it is not easy. I tell patients they don’t have to be positive all the time and it’s okay to feel the way they are feeling. It’s also their time when they can lean on others a little. It’s okay to need help.

The other thing that may get forgotten sometimes is that cancer is rarely a patient’s only challenge. I met a person recently that was in tears during treatment. It was easy to think that the patient was overwhelmed with what was going on with the diagnosis itself. When we stopped to talk, I learned that the patient was dealing with a child with health issues and partner with a mental illness who wasn’t coping with her diagnosis. As we talked through these issues, I was amazed by the patient’s strength and focus on family. I could see this person needed the space to talk about their own feelings. It was rewarding to be able to validate those feelings and help connect this patient with the supportive care department to continue to work through this. I think this person left that day feeling a little lighter. Don’t we all need to feel heard?

I’ve also observed that until there is a cancer diagnosis many people don’t listen to their bodies. Following the diagnosis, there is greater connection and attention to the body that can occasionally lead to anxious thoughts, but can and should really be empowering. I teach a class on lymphedema, a kind of swelling caused by damage to lymph nodes that sometimes occurs with cancer treatment. I always start by suggesting that patients use the knowledge gained from the session as power and not invite the side effects in. I see a person after cancer treatment as being slightly more evolved with respect to listening to their bodies. I want them to know we will not diminish their concerns as being hyper-vigilant but instead, we will validate and engage them in understanding more.

Cancer and cancer treatment can come with many challenges, but its legacy does not have to be negative. I have seen many patients go through a de-cluttering process, no longer sweating the small stuff, as they see what truly matters in life. We celebrate the last day of treatment and though it might seem non-scientific or hokey, I encourage patients to leave “it” here and walk out the door free. Life may look different after cancer treatment but it can still be beautiful. Cancer does make the beauty of the human spirit more apparent and the strength of faith, character, and hope comes shining through.


Michele Cardoso is a clinical specialist radiation therapist at Juravinski Cancer Centre. 

Melissa's kids holding up a mirror so she can see her reflection

The thing about cancer is… it changes your reflection

By Melissa Powell

What Makes Me A Woman?

The thing about cancer is it changes your reflection, slowly morphing the way you see yourself with each physical alteration. The person you once saw staring back is so unfamiliar that it makes you catch your breath as you glance in a large window, or do a double take when you look up while brushing your teeth. A cold reminder of your trials, your new reality, with each glimpse.

A wife and mother, my detour from my regularly scheduled programming began only a few short months ago as I was told I have breast cancer. With treatment plans in place, I often ponder over all the physical transitions to come and the idea of womanhood, its definition – and evolution. It was during this time that this simple and honest question made its way to the surface: What makes me a woman?

A question that might seem simple in appearance, but one that I had to ask myself as my body changes in ways I would have never imagined at the age of 38. Currently, in chemotherapy, most of the strands of my golden-brown hair have now abandoned my head, leaving a round, hairless figure in my mirror. In the months to come, the breasts that I have known for most of my life, that have given me my curvy frame and nursed both my children, will be removed from my body, creating a void.

I am someone who has fought hard to stand confident in my skin

A lot to take in when you consider how society has viewed a woman’s worth. Being a woman is so often evaluated from the outside-in and we are defined by our appearance, rather than our presence. Growing up as a girl in this world, it’s understandable that I am taking some time to process these alterations to my outer shell. Now don’t get me wrong, I am someone who has fought hard to stand confident in my skin and self-worth, to showcase my body in a world where it is scary to put yourself out there and be someone others can see themselves in. I strive to be vulnerable and aware of my actions. I do this even more so, as I have a young son and daughter who I pray will never know the pain of being uncomfortable in their own bodies, ridiculed for differences, or feel the need to conform to fit in. I intentionally choose my words carefully, as to not perpetuate this cycle.

Melissa, her partner, and their two kids


As I continue to fight breast cancer, I look forward to more conversations with my children about what it means to be a woman. I want them to draw their own conclusions and explore the answers. This is where real change will begin. I’m excited for them to witness first hand that long hair and boobs are not the recipe for a female, but are merely pieces of the design. Pieces of design, that we can alter for our expression, health, or happiness – but that the home remains the same. It is made clear that being a woman is not these social constructs we have lived by for so long. That hair and boobs, ovaries and reproduction, are not what defines me. As my body changes inside and out, my spirit remains the same.

Melissa receiving treatment


In a perfect world where a book is not judged by a cover but rather by its story, I could thrive as my newly found battle with cancer is a real page-turner. But how do I share my conclusion of womanhood in a world that still markets photos of one small demographic in their ads and magazines, where our appearance is how we are evaluated, and where the measure of a woman is determined in a matter of seconds and not a conversation? My only conclusion is to let my female spirit soar!

That’s right, by stepping up to show you another silhouette of a woman. One with no hair, and soon to be flat-chested and nipple-less with large, laborious scars across her chest. In a place where self-love and embracing your body is making its way to the forefront, I’m happy to join others in representing women battling breast cancer. A disease that does not make us or rob us, but simply transforms us.

So what makes me a woman? Well I can tell you today, it’s heart, not hair. It’s brains, not boobs. It’s spirit. I take these as my own valuable lessons and happily pass them on.


Melissa Powell is receiving treatment for breast cancer at Hamilton Health Sciences’ Juravinski Cancer Centre. Follow her journey on Instagram @mellyjoypowell.

View of the City of Hamilton

Addressing the causes of the causes of poor health

By Rob MacIsaac, President & CEO

Exceptional health care, like the kind we have in Hamilton, is a huge benefit to the lives of many people. Everyday, the skilled teams working at Hamilton Health Sciences fix broken bones, halt cancer and help reduce the impact of infectious and chronic disease. Our work increases the opportunity for good health for many people of all ages across the city. However, all the work we do doesn’t create healthy populations of people. If it did, our neighbours living in Hamilton’s urban core would be among the healthiest and longest-living people in Ontario. Sadly, the facts tell a different story.

The core of Hamilton is home to among the most advanced hospital care in the province. But its residents use hospitals on a per capita basis more than any other city in Ontario. Residents in the core of our city live shorter, less healthy lives than those residing in every other part of Hamilton. Why does this health gap exist? And, more importantly, what are we doing about it?

The things that bring people to hospital are not the source of the problem.

The answer to the first question is well-established and supported by research examining similar health disparities around the world. The things that bring people to hospital – chronic disease, injury, a lack of well-being – are not the source of the problem. Rather, it is the causes of these causes that are to blame for health disparities as large as those experienced in Hamilton. These are the social determinants of health. The most influential of these determinants are income, education, opportunity, housing and food security. These factors far outweigh the impact that access to medical care has on a person’s health. In fact, they influence someone’s ability to live a healthy life more than medical care and genetics combined.

One of the world’s leading thinkers on this topic, Dr. Michael Marmot, explains in his 2015 book The Health Gap that the conditions in which people are born, grow, live, work and age have a profound impact on their life-long health and wellbeing. Shortcomings and inequities across our city have an enduring impact on the relative health of our citizens. These shortcomings exist in early childhood development, access to affordable housing, attainment of education, opportunity for high-quality employment, social inclusion and support for healthy aging. The damage to health caused over time is far greater than we can ever hope to repair with medical care, drugs, surgical interventions, counselling and therapy. So, what should we do?

Well, as the adage goes, an ounce of prevention is worth a pound of cure. For our part at Hamilton Health Sciences, we’ve made population health a strategic direction for our organization. To us, this means creating a healthier community in collaboration with health and social service providers, to support people who are most at risk of disease or preventable hospital stays. It also means leveraging our status as an anchor institution in Hamilton to provide uplift and better living circumstances for those we serve. I’ll give you a few examples.

As the adage goes, an ounce of prevention is worth a pound of cure.

Four years ago, our hospital formed a team of staff designed to help people who frequently need the support of our emergency departments. Now called the “Hospital 2 Home Team”, this innovative, community-based group of health professionals partner with patients, caregivers, primary care, and other community service providers to address individuals’ health disparities and facilitate easier access to health services. The team works together with our patients to ensure they can fill their prescriptions, attend medical appointments, and access food and adequate housing. The team focuses on what is most important to the person in our care and what is most concerning to them about their health. Since 2014, the team has helped over 1000 people in Hamilton to improve their quality of life and in doing so reduced their cumulative emergency department visits by 40 per cent.

As the largest employer in our region, Hamilton Health Sciences is also leading by example and using our significant hiring power to create high-quality, local job opportunities, particularly for youth in the urban core.

We’ve partnered with Mohawk College’s City School and the City of Hamilton’s Neighborhood Action Strategy to make jobs in our workforce more accessible to youth, by giving local high-school students a firsthand look at a career in health care. Students enrolled in this 4-week program shadow health care professionals, including dietitians, clerks, therapeutic recreationists and technicians who reprocess medical equipment between uses. They experience simulation training in a variety of workplace scenarios and get a complete picture of what their pathway to a fulfilling career might look like.

Our hospital sees the numbers in the Code Red series. We also see the impact on people’s lives, perhaps more than most.

We’ve also recently signed-on to Civic Action’s Hire Next initiative, committing to look at our own human resource practices to see how we can better hire and retain young people, especially in parts of our community where youth face multiple barriers to employment. By reaching young talent that has traditionally been marginalized, we can increase diversity within our organization, construct a workforce that reflects the community we serve, and help out the neighborhoods surrounding our hospital, especially in areas of the city experiencing poor health outcomes. It’s a win-win-win.

Our hospital sees the numbers in the Code Red series. We also see the impact on people’s lives, perhaps more than most. From that vantage point, we cannot overlook the role we can play in addressing the root causes of poor health in our community. We have to make good health more attainable in the places where inequities make it elusive.

We are leaning-in on this work in a big way, and we’re not alone. It will take more than ten years to turn back the tide of health disparities discussed in this series, but we’ve started the work and we’re not turning back.

A chief technology officer stands in the foreground of a digital health unit

The future of digital health in our hospitals

By Duane Bender, Chief Technology Officer, Hamilton Health Sciences

Online shopping, banking, food ordering and a thing called Uber. This is the digital age.

Has the Canadian health care sector caught up?

I have been a technologist my entire life. When I was a little kid I tried to understand electricity by taking apart live lamps and cutting batteries in half. I have all of the scars to prove it.

Looking under the hood of our most basic and complex technologies is something that keeps me going in my day-to-day work.

The digital health plan will improve the employee experience by introducing modern tools for safety and communications.

It’s this passion for technology innovation and a desire to make a positive impact on my community that led me to Hamilton Health Sciences (HHS).

An unlimited list of applications

We are one of the largest academic hospital systems in Canada. I envision us to be leaders in care delivery to people throughout the entire life cycle, supported by a wide range of patient-focused and clinical technologies.

My wish is for us to be a “learning health system,” continuously improving through the strategic collection and analysis of clinical evidence.

As Chief Technology Officer, I evaluate current industry trends such as mobile, wearable, cognitive computing and cloud technologies. All the fun toys consumers have experienced for years.

Hospitals exist in an age where the question, ‘Where is that really expensive piece of equipment right now?’ can be answered with real-time location-based services technology.

We have in-home monitoring solutions that would shorten hospital stays but we can still support people with great care through sensors and communication tools.

It’s an unlimited bank of opportunities that we can address with the right investments.

A digital health plan that improves your experience

Last year, HHS developed a digital health plan to map out the various improvements we want to make across our sites.

Every aspect of the plan will improve the way we deliver care. It was designed with that purpose as the central principle.

We are investing in digital technology in ways that will provide that experience to our community in the not-so-distant future.

From a patient perspective, we are currently piloting our new patient portal, which will improve communications with our patients by opening online access to their medical records.

The digital health plan will also improve the employee experience by introducing modern tools for safety and communications. This will enhance the mobile and wireless experience. Information will get to the right people at the right time.

We also plan to expand and improve our networks, including internet and Wi-Fi access that will lay the foundation for exciting applications to come.

If we execute the digital health plan, we will have modern IT systems that will enable a truly mobile workforce, provide timely information to patients and clinicians, and plant the seeds for advanced analytical capabilities such as machine learning and artificial intelligence.

We are investing in digital technology in ways that will provide that experience to our community in the not-so-distant future.

Exciting days are ahead. Our patients, employees and physicians deserve a hospital system that works with the latest technology.

Dr. Andrew Mente in the produce aisle of a grocery store

The evolving relationship between diet and health

By Dr. Andrew Mente
Principal Investigator, Population Health Program, Population Health Research Institute
Associate Professor, Health Research Methods, Evidence and Impact, McMaster University

Understanding how food affects our health is not a new journey, but as our societies change and evolve, so must our explorations.

In the early 1900s, researchers were focused on the role of vitamins and minerals in human health, since common conditions like scurvy were a result of nutritional deficiency. By the 1950s, Western countries saw a major increase in heart disease, so attention shifted to the “heart-healthy diet”. While this concept is still in focus today, it’s being examined through many new and different lenses.

Early Western-led studies on the effects of nutrition on health focused only on Western countries, and it was these studies that provided the evidence that informed global dietary guidelines. Since then, we’ve learned much more about nutrition around the world and we know now that we can’t take a ‘one-size-fits-all’ approach to educating people about nutrition. Increasingly, as researchers, we need to look from a global perspective as we continue to explore the relationship between diet and health. Because health concerns like heart disease are now a global issue, broadening our scope can have a greater impact and help people around the world live healthy lives.

Broadening our scope can help people around the world live healthy lives.

In 2002, myself and a team of researchers at Population Health Research Institute began the challenge of capturing dietary patterns on a global scale. This is ongoing, but we’re analyzing data from over 50 countries on six continents to explore how food intake affects the health of people all over the world from all walks of life.

So far we’ve learned that, contrary to popular belief, a higher intake of fat is actually linked to lower health risks. By contrast, a diet higher in carbohydrates is associated with a higher health risks. This means that a moderate amount of fat and lower intake of carbohydrates is best for our overall health.

As expected, a high intake of salt increases a person’s risk of health problems such as heart disease. However, we also found that a very low intake can be detrimental, too. This means that a moderate intake is salt is the healthiest option – an amount that the majority of people already consume.

Our work is already challenging common nutritional wisdom.

We also believe a strong case can be made for increasing the consumption of potassium-rich foods since we’ve found that it contributes to decreased rates of stroke in people from all countries. Since fruit, vegetables and certain dairy foods are high in potassium and consumption is low worldwide, this may be a good place to start.

These are only a few observations so far. However, our work is already challenging common nutritional wisdom and will hopefully begin to influence public health recommendations.

Since one of the largest research biobank’s in the country is onsite, we’re lucky to continually have access to the samples collected. This means the opportunities are endless on our nutritional explorations. We hope to venture into finding out why we’ve found these results – what the foods or nutrients are doing within our bodies to cause heath issues like heart disease and stroke.

For now, regardless of our dietary guidelines, “everything in moderation” is the key.

Dr. Andrew Mente, explorer

Dr. Stacey Marjerrison

Improving care for Indigenous children with cancer

Written By: Dr. Stacey Marjerrison, pediatric oncologist at McMaster Children’s Hospital and assistant professor at McMaster University.

Treating childhood cancer is an incredible privilege. Most days, I get to meet families facing their worst nightmare, and have the honour of watching them find strength they didn’t know they had. I get to giggle with kids who somehow manage to find joy and humour in the most trying circumstances. I get to say the words: “the cancer is in remission” and see parents’ faces light up with relief. But, that isn’t every day.

One in five children with cancer will not survive. We do not yet have the tools to save every child’s life. We do, however, have the tools to make their cancer journey better. When days get tough, being able to take a step back and think about how I can improve the cancer journey for all of the families that I help care for makes those awful days easier.

We know that for marginalized families, the cancer journey is tougher than average. Families from low-income neighbourhoods and low-income countries face additional hurdles to those of an average family. Among them are Indigenous families living in Canada. Improving care for marginalized families, including Indigenous families, is the major focus of my research.

I noticed early in my career the differences in survival that Indigenous kids with cancer were facing.

I’m a childhood cancer doctor and a researcher, but I am not an expert on Indigenous health. I noticed early in my career the differences in survival that Indigenous kids with cancer were facing across American studies. Working with experts in Indigenous health, I set about trying to answer the question being asked by many of our Indigenous patients: does this difference also exist in Canada? Our analysis in Ontario showed that First Nations, Inuit and Métis kids diagnosed with childhood cancer had about a 15 per cent lower survival rate than the general population. But, we noted that this difference doesn’t seem to be due to factors such as the time it took for a child to be diagnosed, their adherence to treatment, individual characteristics (age, gender, nutritional status), the severity of the disease, or the strength of the treatment. Our findings differed from a study from Manitoba (which showed no worse outcomes for First Nations children), so we’re now working together on a Canadian-wide analysis. We hope this will help us discover if outcomes have been worse for Indigenous kids with cancer, and if so, why this difference exists and how we can close the gap.

Research is an opportunity for us  to learn how we can make the cancer journey easier for our patients and their families.

Beyond survival, we must also improve the health journey for families. We know that Indigenous Canadians often face systemic racism when interacting with the healthcare system, and when participating in healthcare research. Working with Dr. Chelsea Gabel – an expert in Indigenous well-being – my colleagues and I published a review of ways to improve Indigenous health research in Canada. Ensuring meaningful partnership with Indigenous communities and scholars, considering Indigenous methods and methodologies, and making sure that research findings are considered within the context of Colonial history and current inequities are some of the ways forward.

We also need to ensure that healthcare providers are educated to provide culturally safe and informed care to Indigenous patients. As such, I’m helping to develop new curricula for post-graduate students under the umbrella of the McMaster University Faculty of Health Sciences Indigenous Health Initiative. We hope to build on the lessons we’re learning through a qualitative evaluation of the pediatric residency curriculum this past year, applying our findings across the programs at McMaster.

Inside the hospital, we also hope that the recent opening of Mkoonhs Zhongehgii Iako’nikonhrahnira:ton, our Indigenous family room at the McMaster Children’s Hospital, creates a space where all our Indigenous families feel welcome.

Finally, on an international scale, I’m working with global experts to evaluate how to safely integrate Traditional and complementary medicines into childhood cancer care; a priority for many Indigenous Peoples.

Walking with families through their childhood cancer journey is an honour. Research is an opportunity for us – as healthcare providers – to learn how we can make that journey easier for our patients and their families.

A portrait of Dr. Catherine Ross standing in a laboratory setting

Better relationships with doctors means better care

By Dr. Catherine Ross, pathologist, and member of Hamilton Health Sciences’ Physician Hospital Partnership


A few years back, an email from Hamilton Health Sciences’ lead doctor popped up in my inbox.

He was launching a new committee to explore ways to improve relations between the hospital and its doctors and was looking for people to join.

I jumped at this opportunity.

The hospital is listening.

Not necessarily because I thought the relationship was bad, but because I thought it could use some help.

Committee strengthening relationships

For those who don’t know, in Ontario, most doctors don’t work for the hospitals where they practice. They bill the government directly for their services.

While not intentional, the absence of an employer-employee relationship has often allowed doctors’ input to be overlooked. This is common at hospitals across Ontario.

Our expertise is always considered when it comes to patient care.

In my 10-plus years at HHS, I wouldn’t say physicians have been completely excluded, but we haven’t always been included. Our expertise is always considered when it comes to patient care, but less so for operational matters.

That email told me change was happening.

Our committee, the Physician Hospital Partnership, has been working since 2014 to understand the issues, and figure out solutions to strengthen this important relationship.

We are making progress.

For example, we worked to adjust hospital budgeting processes to require physician input, providing a platform for physician advocacy on how money gets spent on the units.

More physician-hospital interaction

We’re also creating opportunities for more interaction between doctors and hospital leadership, to build trust and to share ideas. HHS executive leaders regularly attend medical department meetings to have open and honest conversations about the realities of care, both on the frontline and in the administration.

Last year, we held a summit which brought all parties together to figure out how to improve hospital decision making. We’re currently figuring out how to put some of these ideas into practice to provide value to our doctors.

It’s a great time for physicians to speak up and have a greater say in your hospital.

There’s plenty of work in this area still to do and there are many opportunities for physicians to get involved.

Ultimately, better physician-hospital relationships mean better care for patient. The hospital is listening. It’s a great time for physicians to speak up and have a greater say in your hospital.


Supporting nurses to provide palliative care

What is palliative care?

Palliative care is a holistic approach to care that improves the quality of life for patients facing a life-threatening or life-limiting illness. As providers, we know through research that patients suffering from a non-curable illness want honest and timely information about their condition including treatment options. They want to know their physical symptoms will be managed to relieve suffering, and they want to die in a place of their choice.

Palliative Care Nursing Practice Committee at HHS

Nursing is a pivotal role in achieving patient goals and supporting family members. In 2016, the Director of Oncology Critical Care & Palliative Care and Interprofessional Practice Chief, established the HHS Palliative Care Nursing Practice Committee to support and enhance nursing practice in order to deliver a positive experience for patients and families.

The committee is co-chaired by Charissa Cordon, Chief of Nursing Practice and Cathy Reis, Clinical Nurse Specialist with the Juravinski Hospital and Cancer Centre Palliative Care Team. The committee meets monthly and is comprised of nursing representation from across HHS sites, including nurse leaders, advanced practice nurses, point of care nurses, the office of ethics, and a patient/family advisor.

The committee has made efforts to understand the knowledge, strengths and gaps of nursing at HHS to develop educational strategies and a work plan prioritizing the needs of various HHS nursing groups.

In addition to staff input, a family advisor has been an active member of this committee. Based on her experience with a loved one, she has helped us understand the importance of early identification of supports that would assist in enhancing quality of life and open, clear communication between staff, physicians, patients and family.

“providing palliative care services alongside disease specific treatment is becoming more recognized as an approach to care that can improve the quality of a person’s life”

A work in progress

The committee aims to bridge the gap between nursing education and nursing practice and ultimately raise the profile of palliative care nursing across HHS. They have begun implementing education strategies in addition to supporting several initiatives at HHS. Work to date includes:

• The development of an education module on palliative care that has been incorporated into the HHS Health Professional Orientation (HPO) for all new staff members.

• The development of an HHS Palliative Care Nursing site with nursing specific resources, patient information material and nursing education opportunities.

• Embedding knowledge of a palliative care philosophy and care competencies into targeted nursing orientation programs such as oncology, intensive care, and at select program-specific annual skills update.

• Development of learning pathways and implementing symptom management guides in St Peter’s Hospital specialized palliative care unit.

• The committee recognizes the importance of clear, quality conversations with patients and families which leads to creating care plans that align with a patient’s wishes and values. Several committee members had an opportunity to attend an education workshop led by members of the Serious Illness Conversation Program in an effort to build training skills and mentor others.

• Member contribution to the development of the Ontario Hospice Palliative Care Standards.

• Provincial recognition and award for best oral presentation at the Hospice Palliative Care Ontario Conference in April 2018.

Improving quality of life

As co-chair of the HHS Quality End of Life Steering Committee and Clinical Ethicist for HHS, Sandra Andreychuk has observed a shift in the perception of living with a non-curable illness. The notion of providing palliative care services alongside disease specific treatment is becoming more recognized as an approach to care that can improve the quality of a person’s life.

Teams are beginning to appreciate that all health care professionals have a role in assisting patients and families in delivering care plans that align with a patient’s wishes and values. The Nursing Palliative Care Practice Committee has taken the lead on identifying how best to build capacity among their discipline to facilitate this across units at HHS.

As HHS’ Palliative Care Physician Dr. Joshua Shadd would say, “palliative care is everybody’s business” and the Palliative Care Nursing Practice Committee is making that happen.

Stelios Georgiades, autism researcher, explorer

Autism research should be based on individual strengths

By: Dr. Stelios Georgiades
Co-Director, McMaster Autism Research Team (MacART)
Scientist, Offord Centre for Child Studies
Assistant Professor, Psychiatry and Behavioural Neurosciences, McMaster University

Autism is challenging and complex. It impacts different aspects of life in different ways. It changes throughout development and over time. It touches no two people the same.

However, traditional research approaches to autism tend to “lump” children into large groups based on their symptoms and behaviours at any given point in time. These approaches are too simplistic and don’t capture the complexity and diversity we see across the spectrum and the lifespan. Bottom line – much of our research efforts to date have had limited success in advancing autism care.

We hope to inform the development of more individualized and adaptive, family-centred services and supports.

In my opinion, autism is about diverse perspectives and how these are communicated. How do children with autism see the world? How do they see themselves in the world? How does the world see them? These perspectives shape how each child interacts differently with their family, peers, teachers, care providers, and community. If we can better understand these interactions and the perspectives that influence them, we can help support the child along the most appropriate developmental path.

So, my colleagues and I at the McMaster Autism Research Team (MacART) and the Offord Centre for Child Studies are exploring autism using a strengths-based approach to understand how children grow and develop within their surroundings. Ultimately, we hope to inform the development of more individualized and adaptive, family-centred services and supports.

Our new Pediatric Autism Research Collaborative (PARC) project is embedded within the autism clinic at the Ron Joyce Children’s Health Centre of McMaster Children’s Hospital. Our research team is working alongside clinicians to gain a better understanding of which services, or combinations of services, contribute to healthier outcomes for children with autism. Of course, there is no one answer for this, so we’re hoping to find some positive trends that can help parents and care teams navigate the system effectively for each child.

An optimal outcome should be based on each child’s personal characteristics and individual growth over time.

As autism researchers, we’re not striving for a single discovery. Instead, we aim to ensure that every child with autism has an “optimal outcome”. But first, we want to re-define what that means.

In my 15 years as an autism researcher, I have had the opportunity to work with some of the world’s best clinicians and scientists. But, the most valuable lessons I’ve learned are from my interactions with children with autism and their families. Based on this, my team and I believe that an optimal outcome should be based on each child’s personal characteristics and individual growth over time, within a system of care that adapts to their changing needs. That’s the vision we’re working toward.

Creating a sustainable future for our patients

By Donna LaForce, Director, HHS Sustainability

A hospital’s budget can be thought of in much the same way as your family’s household budget.

At home, a good portion of every paycheck is spent on costs you can’t do much about like your mortgage or rent payment, your car payment, groceries and utilities. What’s left after you cover all those costs is usually a much smaller amount to be used for the balance of what you want and need in your life.

In the hospital setting, 70 per cent of our funding is earmarked for specific activities, through programs like the health based allocation model (HBAM) – a complex formula which dishes out provincial funding between hospitals for certain services – and quality-based procedures (QBPs) like day treatments and surgeries.

Finding system opportunities while refining how we work.

The remaining 30 per cent, called “global funding,” isn’t tied to specific activities, but needs to cover everything else, from support staffing to building operating costs to equipment needs. At HHS, and across the hospital sector, these costs continue to outpace available funding.

Essence of Sustainability

We’ve been open about the financial pressure we’re facing and what we’re doing to address it. Just like a family would do in this situation, we’re looking at all of our inputs and outputs to see whether we can do things differently. This is the essence of our Sustainability efforts – finding system opportunities while refining how we work.

While we’re required to balance our books each year, our challenge, and our opportunity, is much bigger than just finding short-term savings to temporarily get out of the red and into the black. It’s about how we can progress our work to provide continuous value for our patients and families.

Small actions can make a big difference.

The good news: across the global health care sector, there’s a constant stream of new ideas on how hospitals can achieve these efficiencies. Getting there will take understanding, flexibility and commitment from everyone involved. But collectively, many small actions can make a big difference.

Providing continuous value for patients

For example, we’re bringing almost a million dollars back to the hospital each year by changing how staff access their compression stocking benefit. Making HHS pharmacies the sole provider may have been a little less convenient for some, but it means we now have new opportunities to reinvest in our patients’ experience.

Shift from business as usual to constantly seeking to improve value for patients.

Another example is work being done around outpatient medications, like intravenous (IV) iron shots. Until now, HHS has covered this cost to the tune of tens of thousands of dollars annually. After taking a hard look at the situation, we’re now transferring this expense to the Ontario Drug Benefit plan or to patients’ private insurance – arguably where it should’ve been all along – freeing up much needed cash for hospital services. All without impacting our patients.

The shift from business as usual to a state of constantly seeking to improve value for our patients, what we call operational excellence, is a journey and in many ways, we’re just at the beginning. Looking inward may be challenging at times, but doing so will get our financial house in order to ensure we can deliver the sustainable future our patients, families and community deserve.

Dr. John You

Quality of life vs. prolonged life

By Dr. John You, Internist, Hamilton Health Sciences and Associate Professor, McMaster University

Research shows that up to 70 per cent of seriously ill, hospitalized older Canadians are receiving invasive treatments that they don’t want.

This could be your mother or your grandfather. Maybe someday, it will be you.

We know that many older patients with serious illness want to maintain quality of life rather than prolong it. However, the use of aggressive life-sustaining technologies in this vulnerable population is common. Instead of a peaceful experience, they are receiving unwanted invasive medical treatments, even during their last days.

Too little, too late

A national, multi-year study involving seriously ill older Canadians revealed that even though 28 per cent of the participants stated a preference for “comfort care” (meaning no curative treatments), this was documented in only four per cent of their charts. This discrepancy can lead to a poor patient experience and an increase in family distress.

Why is this happening? Often, it comes down to a lack of communication. Even though studies have shown that seriously ill patients and families have identified communication and decision-making as high priority targets for quality improvement, conversations about what matters most to patients when they are faced with serious illness are typically “too little, too late, and not great.”

Conversations about what matters most to patients when they are faced with serious illness are typically “too little, too late, and not great.”

The gap doesn’t just exist within the hospital setting. A 2014 Ipsos Reid survey revealed that 60 per cent of Canadians want their family doctor to talk to them about their preferences for care during serious illness, but only 26 per cent of primary-care physicians are comfortable having those discussions. Sixty-seven per cent of primary-care physicians said they need more resources and information.

These conversations are also rare in long-term care homes, even though death is commonplace in this setting.

It’s clear that we are missing opportunities to have important conversations with older Canadians at the most vulnerable time of their lives.

A road map for conversations

We’re hoping to change this trend.

I’m leading a new three-year national study, called iCAN-ACP in collaboration with colleagues in CARENET, the Canadian Researchers at End of Life Network. The project aims to address these problems by introducing and evaluating “advance care planning” tools. We hope this will result in more, earlier and better conversations between older adults, families and their health-care teams.

Advance care planning involves thinking about and communicating your preferences for care in a way that expresses your values. It also includes choosing someone to be your “substitute decision-maker,” someone who could speak for you and make decisions if you couldn’t speak for yourself.

The iCAN-ACP project, funded by the Canadian Frailty Network, has just been launched in long-term care homes, family doctors’ offices and hospitals across Canada, bringing together a team of 32 investigators from 16 universities, five international collaborators and 42 partner organizations.

Our goal is to identify valuable tools that will reduce unwanted treatments and ensure that patient voices are heard.

The project will study conversation aids, including workbooks and interactive websites for older adults and their families, and conversation guides for health-care practitioners.

We know from past research that advance-care planning can have a significant impact on end-of-life experiences for both patients and their families. But all too often, these conversations are not happening early or often enough.

iCAN-ACP will engage older Canadians living with frailty, and their families, as well as clinicians, health organizations and related patient associations — to evaluate several of these conversation aids.

Our goal is to identify valuable tools that will reduce unwanted treatments and ensure that patient voices are heard.

Guillaume Pare, HHS researcher, explorer

Unlocking the code

By: Dr. Guillaume Paré
Medical biochemist, Hamilton Health Sciences
Senior Scientist, Population Health Research Institute
Associate Professor, Department of Pathology and Molecular Medicine, McMaster University

April marks the 15th anniversary of the completion of the Human Genome Project, a thirteen-year journey led by scientists from around the globe to map all of the genes of the human species and one of the biggest undertakings in scientific history.

When the project began in 1990, the goal was to not only understand genetic factors in human disease, but to set the course for new treatments and prevention methods for ailments like cancer and heart disease. It was a costly project with a price tag of about 3 billion dollars, but the investment was worthwhile: it gave way to a whole new era of discovery in the pursuit of global health.

The last decade and a half has also seen an acceleration in technological advancement. Our genetics lab at HHS is now fully automated – extracting, mapping, sequencing and copying DNA – allowing our team to quickly generate substantial amount of data to support many of the large-scale, global research studies that we lead from right here in Hamilton. These advancements have happened so quickly that, today, our lab could do the same work as the Human Genome Project in less than one week for only a few thousand dollars.

Machine for DNA extraction in the HHS genetics lab

The results of these extraordinary advances are clear. We’re now able to classify more than 1,800 genetic diseases, including genetic forms of common diseases as breast cancer, Alzheimer’s, diabetes and heart disease. Furthermore, scientists have been able to develop tests to better predict a family member’s genetic risk, allowing healthcare providers to help prevent the development of potentially devastating diseases.

We’re now able to classify more than 1,800 genetic diseases.

But, we’re also left with a new set of challenges. Although we’ve unlocked the mystery of our genetic make-up, we’re now dealing with the surge of genetic data we’re able to generate with modern technology. Indeed, the bottleneck in research projects is often data analysis, meaning that the role of “scientist” is evolving in to “data scientist”.

In recent years, we’ve learned that it’s not always a single gene responsible for disease, but that different variations in our genetic makeup can equate to risk. So, what does that mean in terms of data? To start, every person has around 20,500 genes, but within each gene are subtle differences called genetic variants. We’ll record anywhere between 500,000 to 1,000,000 genetic variants per person. Then, multiply that by the thousands of people in a research study. Fifteen years ago, this would have been simply impossible. Not only would it take years to complete by hand, we just didn’t have the computing power to store the data. Currently, we have over 200 terabytes of genetic data stored at HHS. That’s the equivalent of 40 million minutes of high-quality YouTube videos!

Currently, we have over 200 terabytes of genetic data stored at HHS.

Building these data and sophisticated analysis techniques, my team at HHS’ Population Health Research Institute introduced a test earlier this year that can predict an individual’s genetic risk of early heart disease with high accuracy by combining information from a large number of variants. This discovery was made on the shoulders of the Human Genome Project and large-scale international collaborations aiming to decipher the genetic underpinnings of heart disease.

As is the essence of research, the original question that the Human Genome Project sought to answer opened up the floodgates to countless new queries. The endeavour shed a new light on the most precious part of humanity, but we still haven’t fully broken our genetic code. We’ve made immense progress in the last 15 years, but there’s lots more we need to learn.

This is what drives us as researchers and clinicians: to always find new and better ways to prevent disease in people around the world. It’s an ambition we all share; it’s in our DNA.

Dr. Guillaume Pare, medical biochemist, explorer