A diagnosis of heart failure is scary and confusing. It takes time to understand and accept. Navigating the healthcare system is just one more challenge, and it can feel overwhelming at times. But, feeling empowered, informed, and connected to others can help you move effectively between your family doctor, specialists, and different health centres.
Advocating for yourself as a patient, or for a loved one as a caregiver, means having a voice in all medical and emotional care. This may include making appointments for tests and doctor visits, from the first day of screening through the diagnosis, treatment, and follow-up care. It can also include finding social and/or mental health support, advice about disability support, and other matters that affect a patient through their entire heart failure journey.
It is important to know that all patients in Canada have legal rights. In Ontario, for example, patients have the right to:
- Receive safe and proper care
- Give or refuse consent for any procedure, and for any reason
- Have a medical professional clearly explain health problems and treatments to you
- Participate in health care decisions
- Ask questions and express concerns
- Request a second opinion, within reason
- Be assured that personal information is confidential
- Request to access your health information records
- Request the transfer of your health records to another medical professional; you may be charged a fee.
It is in your or your loved one’s best interest to understand the legal rights, and to exercise them when necessary. It is also important to respect the rights of healthcare providers, and to treat them with patience and compassion.
While everyone will have their own experiences as a heart failure patient or caregiver, there are some that will be common to all. Below are three personal accounts that may provide insight into how advocacy can play a role in you or your loved one’s journey with heart failure. Meet Cindy, her father’s essential caregiver; Lori, a congenital heart disease patient who has lived with heart failure all of her life; and Noli, a man who has recently been diagnosed with heart failure. Discover what makes them unique and similar, and what they would like you to know about living with heart failure.
- My Role as My Father’s Caregiver: Overcoming Language and Cultural Barriers is an Ongoing Process
- Heart Failure at 53 has Made Me Appreciate My Care at UHN
- My Life with Congenital Heart Disease and Heart Failure
My Role as My Father’s Caregiver: Overcoming Language and Cultural Barriers is an Ongoing Process
By Cindy Yip
My father’s heart failure symptoms are documented in various clinical notes. However, I don’t recall either of us being officially told he had or was at risk of this progressive disease. That is, until he was rushed to emergency care due to excessive fluid retention at the age of 66.
There are likely many factors that contributed to his failing health: a history of rheumatic heart disease since childhood, a mitral valve replacement in his mid-40s in Hong Kong, and the lack of routine follow ups with specialists after he immigrated to Canada. When he left Hong Kong, he also left his integrated healthcare teams.
Geographical and Cultural Barriers can Take a Toll
Nearly 60 years had passed since his diagnosis of rheumatic heart disease and atrial fibrillation, and 20 years since his first mitral valve replacement in Hong Kong. Although he was a complex heart patient at risk for heart failure, it took years before we met an emergency physician and cardiologist, who together recognized his heart failure symptoms. Until then, I felt that his life was a ticking time bomb. His late referral may have been because he was an immigrant to Canada, with no local medical history or files.
It has been a big relief for me to finally have my father’s mitral valve replacement, rheumatic heart disease, atrial fibrillation, high blood pressure, and heart failure documented and routinely monitored. Now we no longer have to bounce between emergency departments, family clinics, and pharmacies.
What I would have done differently:
- Network and get to know the cardiac specialists in my local community
- Be proactive in inquiring if the local cardiac specialist is accepting new patients
- Don’t wait for the family physician to initiate a referral. Be proactive by providing the name and contact information of the cardiac specialist to the family physician. Take the time to explain why it is critical that the patient is seen by an expert in heart disease and heart failure.
Being New to the Roles of Canadian Healthcare Providers Delays Access to Life-Saving Medications
Healthcare models vary across the world, as do the roles of healthcare providers. This means that the roles and responsibilities of specialists, various types of nurses, family physicians, and pharmacists may not always be clear to everyone. There are also different cultural and generational norms between what my father was used to in Hong Kong and how care is delivered here in Canada. For example, my father believes the clinician should come up with recommendations and that a patient should never question the clinician.
Role confusion can become a huge problem when it comes to renewing a prescription: It is often unclear which medications should be managed by whom, what the refill process is, when the medications will be ready for pick up, and which pharmacy carries them.
Questions to ask when receiving a prescription from a healthcare provider:
- Confirm if he/she will manage that prescription moving forward
- Ask if the medications are commonly available at local pharmacies or if it should be purchased at the hospital pharmacy
- Ask if the tablets need to be split. If tablet splitting is required, ask if a different dosage can be prescribed to avoid splitting a tablet
- For those who are on warfarin, confirm who is going to monitoring the INR level and who should be issuing a requisition for routine blood work.
Life-Saving Information often Gets Lost in Translation
Canadian English isn’t my father’s native language, and he is not familiar with Canadian expressions and gestures. This often leads to miscommunication. For example, my father would often nod or reply with “yes sir” or “yes madam” to express his gratitude to the healthcare teams, not because he understood them. To avoid this, as his essential caregiver, I need to get the information first-hand.
I’m the one making sure he is taking his medication properly, monitoring his diet, and getting him to his medical appointments. I am his only emotional, physical, and financial support in his heart failure journey.
What I wish to happen in the future:
- Healthcare team that recognizes and communicates directly to the essential caregiver
- Healthcare systems with patient navigators and a mandate to ensure continuity of information from healthcare teams to the essential caregiver
- Pan-Canadian adoption of technology, such as MyChart in Ontario, for sharing clinical notes and test results in a secure and timely manner.
- Meeting an extraordinary emergency physician who took the time to talk to me and ensure my father follows his care plan instead of sending him home
- Being referred to a caring cardiologist. The first time, 24 years after we immigrated to Canada, that my father received routine follow up on his complex heart conditions
- Signing up for “MyChart” and “Dynacare Plus” to seek 24/7 access to my father’s clinical notes and lab test results. This allowed me to track his status when he’s in the hospital and at home, which gives me peace of mind. Not only do I understand his condition better, the information helps me prepare specific questions to ask the healthcare team
- Having a career which allows me to be able to financially afford paid healthcare services not covered by OHIP. Also, supportive employers who understand my situation and allow a flexible work schedule
Heart Failure at 53 has Made Me Appreciate My Care at UHN
By Noli Mosquite
I was diagnosed with heart failure in the summer of 2021 following a stroke. During the course of my examination, and in trying to determine where the blood clots originated, the doctors diagnosed me with heart failure. This occurred 14 years after I suffered a heart attack and had stents placed in my heart.
The entire team at University Health Network (UHN) – the cardiologists, nurse practitioners, nurses, technologists and technicians, scientists, staff, and receptionists – have all been extremely helpful, professional, knowledgeable, and kind. I have found it quite easy to navigate the healthcare system within the UHN.
However, I believe this may be because I’m comfortable using technology, still fairly young, and fluent in English. I imagine things could be very different if this were not the case.
Advocacy is a Process
Since I was diagnosed with heart failure, I’ve had a lot of physical and emotional ups and downs, making it hard to actively advocate for myself. I’ve had times when I felt depressed or just low and fragile, with a new understanding of my own mortality. And even though I’m fluent in English, there is medical terminology, tests, medications, and new routines that sometimes feel overwhelming.
The support of friends and family have made a huge difference to me.
I would suggest, if possible, to have someone you can trust and rely on to accompany you to appointments and medical procedures. It’s too exhausting and emotional to try to cope on your own.
I think my heart failure journey so far would be far less lonely if it weren’t for the COVID-19 pandemic. It has made my experience that much more difficult, but I don’t think this is unique to heart failure patients. The support of my family and friends has definitely helped me get through some of the toughest times.
A Fractured System Puts the Onus on Patients
I’ve also experienced a genuine lack of equity between UHN and a few regional hospital emergency departments that I’ve had to visit. It’s made me realize how fortunate I am to be a patient at UHN. My own experience with ER visits in smaller centres has made me realize how fractured our current healthcare system is. It places the onus on patients to be experts in their own medical care, putting them in an impossible position.
Improved communication between regions and better access to patient medical files would help patients, whether they live in Toronto, Niagara Falls, a remote community, or a First Nations reserve in Northern Ontario.
My Life with Congenital Heart Disease and Heart Failure
By Lori Constable-Smolcic RN, BScN
I was told I was “fixed”
I was born as a preemie in Toronto in 1972, and diagnosed with heart failure, along with several congenital heart defects (CHD) that were passed down from my mother. I was immediately transferred to SickKids Hospital, where my mom was told to “hope for the best but prepare for the worst.” At nine years old I had my first surgery to close the holes in my heart and repair the mitral valve. Despite the 50/50 chance of survival, the surgery was a success, and the doctors told my mom that I was “fixed.”
As a kid, my mom looked after all of my appointments, hospital records, and explained everything that was going on. Back then, there were no heart failure or cardiac surgery clinics, and few paediatric congenital cardiologists or surgeons. We were all trailblazers, whether we liked it or not!
“You are in Charge of Your Own Care Now”
At the age of 18, around the time my mother died of cancer, my medical care was transferred to Toronto General Hospital’s Adult Congenital Cardiac Centre. They spoke directly to me: “You are in charge of your own care now.” Truly, it was a shock, and I felt alone and scared.
My main cardiac issues were atrial and ventricular arrhythmias that were relatively controlled. For as long as I can remember my mother didn’t restrict my activity, so despite everything I grew up feeling pretty normal. I was taught to know my own limits. In and out of the hospitals, I tried to do things for myself, and I became very good at “listening to my body.”
Not Being Taken Seriously
As a young adult I had a cardiologist who didn’t take my complaints seriously. When I mentioned my symptoms, I was given the survey “Anxiety in the Congenital Cardiac Patient.” At one of my appointments my doctor brushed me off, saying that I was a female, in college, hormonal, and grieving. I blew up and told him, “I KNOW MY BODY and it’s telling me something is wrong!” I didn’t leave until a catheter was booked. And I WAS RIGHT – something was wrong. I had subaortic stenosis and my mitral valve had to be repaired again, among other worrying issues. My first adult congenital surgery was a few months later.
Heart Failure Becomes a Big Issue
From 1995 to 2003 my biggest issues were still arrhythmias, but now I was going in and out of heart failure. Medication and cardioversions were the main treatments, but I was getting skinny again and extremely short of breath due to fluid retention. I barely ate, slept all the time, and had leg cramping. In September 2003 I received my mechanical mitral valve, making it my second adult cardiac surgery.
Afterwards, I made the decision to become a nurse so I could help those who, like me, felt alone and afraid. But, before that, I had to deal with even worse arrhythmias and heart failure episodes.
I guess I wasn’t “fixed” after all!
Today, at 49, I still have arrhythmias, I’ve had two cardiac ablations, eight automatic implantable defibrillator device (AICD) surgeries, nine admissions from 2019 to 2021 for heart failure, and leg hematomas due to vitamin K deficiency. My last defibrillator was recently changed to a chronic resynchronization therapy device (CRT-D) for end-stage heart failure, and now I am going for assessment for a heart transplantation. I definitely was not “fixed” in childhood! Basically, I have had heart failure all of my life.
How I advocate for Myself
After the second surgery, I learned to do my own research using reputable sources, to stand up for myself even when the doctors and nurses are in a rush, and to insist on information in plain language, using an interpreter if necessary. I gradually discovered that I wasn’t alone in my journey. I found support groups and met other patients going through the same thing. I learned to keep asking questions until I fully understood what was being recommended, and to keep advocating for myself because heart failure is extremely complex.
Joining Groups for Support and Information
I got involved with the Canadian Congenital Heart Alliance, founded in 2004 by a group of volunteer patients, families, friends, and medical professionals. Like me, they wanted to support, advocate, and push for research that might help us live our best lives. I volunteer with the annual volunteer-run Beat Retreat Cardiac Camp for Adult Congenital Heart Patients. It’s the only educational and social camp in North America where we can learn and interact and make life-long friends. I was also asked to speak at the 2021 Canadian Women’s Heart Health Summit by the University of Ottawa Heart Institute as someone with lived experiences, a medical professional, and a woman with heart disease. And I was a member of the Heart & Stroke Structural Heart Disease Council.
My Advice to Others with Heart Failure
My best advice is to listen to your body and get to know when something’s wrong. Learn as much as you can and join heart failure groups in person and via social media. Volunteer when you can, speak about your experiences, lobby your MP and MPPs for improved support and services, and don’t be afraid to speak up and reach out for help.
I would also urge healthcare providers to encourage patients and families to become mentors and advocates. Recommend sources of information that are clear and easy to understand, take time to answer questions honestly, and never forget to be compassionate.
Finally, BE YOURSELF. Don’t let people hold you back, keep yourself as healthy as you can, surround yourself with people who make you happy, educate yourself, and, even when times are hard and bleak, try to have fun and live life to the fullest.
I have 3 sentences I live by:
- “There’s always someone feeling worse than you”
- “Everyone cries, so let it give you strength to fight a good fight”
- “If someone doesn’t like or love me due to my scars, they aren’t worth my time”