Down the Rabbit-Hole: Being (a) Patient in a Fragmented System
Imagine you are a six year old cancer patient. You are a couple months into chemotherapy, bald and stick thin, and in the middle of a 12-day radiation protocol. You are taken in a wheel-chair from SickKids through the connecting tunnel to Princess Margaret Hospital to receive another round of radiation. You are holding a kidney bowl because you haven’t stopped puking since radiation started. You reach the reception desk and a nurse comes around. The nurse bends down and looks into your pale six year old face and says, “You look like shit.”
That is the story of my first experience in the adult healthcare system.
I am a third-year undergraduate student pursuing a Bachelor of Health Sciences at the University of Ottawa. I have wanted to be a doctor for as long as I can remember. I have also been a patient for as long as I can remember. I spent 12 years in paediatric specialty care before transitioning into adult care three years ago. Nothing, not even 12 years of care under my belt, could have ever prepared me for the transition into the absolute chaos that is the adult healthcare system.
Everyone talks about patient-centered care but I don’t think anyone knows what it actually means. It is assumed that if I’m being treated then I’m receiving care. However, there is a whole lot more to patient care than just treatment of illness. Currently, I see six different specialists across four hospitals in Toronto. Two of those hospitals fall within the realm of UHN, two of them do not. UHN has a brilliant system called Patient Portal that has all my appointments, results, and reports. This is an amazing system – if all of your care takes place in a UHN hospital. I am also a patient at Mount Sinai which is right next door to Princess Margaret and in fact, shares some doctors, but I have no access to any of my results from this hospital. For example, I had a pap smear done six months ago, I never received any results so for all I know I could be running around with cervical cancer. You might say that obviously nothing is wrong because no news is good news but if you’ve heard the story of Greg Price, you would know that no news is simply no news. You might also say it’s my job to call the clinic and get my results, but no one had that conversation with me or told me who to call – another forgotten aspect of healthcare communication. So much of my anguish experienced as a patient could have been resolved through appropriate and meaningful communication. This is a skill that I find most lacking in almost every physician I have met. I have a specialist that is in the top of their field and head of the department, an obviously very intelligent individual. This specialist is also the most verbally abrasive and condescending individual I have ever met. I can barely get a word out without being interrupted and if I have concerns, they have often been brushed aside as irrelevant. Every time I leave this doctor’s clinic, I want to cry. This is not what patient-centered care looks like. I think physicians often forget that it is scary being a patient or perhaps they just do not understand. They forget that their words have an impact. Two years ago, I went to see a general practitioner about a nasal infection and upon physical examination they came across my very prominent multi-nodular goitre. Then, completely ignoring my initial reason for coming, started asking questions about the goitre and then finished with, “I wish I had a resident here to see this because you don’t see this everyday”. In that moment, I was nothing more than my condition; I was simply a fascinating medical case. I am sure the doctor did not have malicious intent with this comment or even realize the impact it would have on me, but it is just another example of being treated but not cared for. I took a course called Communication and Health at the University of Ottawa and the one thing I learned in that course that will stay with me forever is that the patient doesn’t care how much you know until they know how much you care.
Although communication is one of the largest aspects hindering patient-centered care, there are more aspects that impact provision of patient-centered care. As I have already stated, I am a student at the University of Ottawa as I have been for the past 3 years, also the length of time I have been a patient in adult care. Although I have said it time and time again and it is written in every one of my patient charts, I still get appointments scheduled while I am away at school. This may seem like a simple problem for me to fix, just call and change the appointment. However, the reality of it is, I call the clinic, no one answers, I leave a message, I get a call back between one day later and never. It is the same ordeal if I want to get in contact with my physician, I have to leave a message with an administrative assistant, who may or may not return my call, and if they do return my call, I basically get censored and often don’t end up getting to speak with my physician. I once called a clinic with a medical concern to which the administrative assistant insisted on details and then told me my concern was not valid for an appointment with my physician. I called again a few days later but this time was met with an answering machine. No one ever returned my call. Further on the topic of appointments, I have spent more hours than I can count travelling down to appointments that were only three minutes long and could have easily been a phone call. I do understand that physicians do not get paid for phone calls but there was technology made for this purpose: telemedicine. It amazed me that I had physicians that had never heard of telemedicine. Many have even said to me they would have used it for my very short appointments had they even known it existed. I do believe that a big step towards patient-centered care would be teaching physicians how to use their available resources, especially technology. Telemedicine could save a lot of time for patients as well as physicians. These are just a few examples of how our system is lacking in terms of patient-centered care because believe me, I have so many more stories and so does everyone I know that has spent time in a Canadian hospital.
I understand that my medical care is more complex than most people my age but not necessarily more complicated than that of people in the aging population. As we know, the baby boomers represent a huge proportion of the population and we also know they are aging. As this population ages there is going to be a higher demand for medical care including complex medical care. How is our system going to handle the rapid influx of medical need in its current state? From 10,000 feet away you can see that the healthcare system is doing what it is supposed to do, but the closer you get the more cracks you see and the more individual patients you see falling through those cracks. Quite honestly, as a former cancer patient I fear getting sick again, but it’s not the disease I fear, it’s being lost in the system that scares me.
It is time for us to diagnose where the disconnect is between treatment and care. Everyone is caught up in the fact that there is not enough money in the system which has somehow translated into an answer for lack of patient-centered care. However, it is small measures that can begin to make a difference and those measures cost nothing. It does not require money to tell me why I am waiting two hours to see the physician and it certainly does not cost anything to speak kindly to me. Perhaps it seems irrelevant to you but it matters to me, the patient.
So how do we fix a fragmented system, a system that has grown apart from its patients? I think right now it begins with our next generation of healthcare professionals; it starts with teaching our medical students and even more so, our pre-medical students the importance of communication, how to use their resources, and what it means to be a patient. Teach them that if they are going into medicine for reasons other than the patient, they are going into medicine for the wrong reasons. Most importantly, teach them that they are treating people, not diseases. It is going to take a lot of time to rebuild the system but it needs to start today, maybe even yesterday. I think overall that everyone in healthcare has to take a step back and wonder, “what if this was me or my family member?”. The Canadian healthcare system in its current state is not sustainable. As a patient, it’s exhausting trying to claw my way out of the cracks of a fragmented system every time I feel myself slipping and honestly, I’m running out of energy to keep clawing.
About the Author
Rachael Bull is a patient @RachaelBull_
Joan Sheff wrote:
Posted 2019/03/21 at 11:43 AM EDT
A splendid article which mirrors my recent experience in 2 major Toronto hospitals where I received excellent medical care but remarkably lacking in empathy, mainly in nursing and support staff. Brits and Americans seem to be better at this.
Posted 2019/12/24 at 02:14 PM EST
Now imagine if a person 1) did not already have access to specialists and institutions familiar with them and their medical history 2) had not suffered from a life-threatening disease with established treatment protocols 3) was in chronic pain 4) was suffering from numerous ongoing problems that seriously impacted quality of life ( i.e. with ramifications affecting ability to earn a living, sustain a network of friends and relations) 5) had no conclusive "diagnosis" but still had to coordinate and follow-up on referrals, diagnostic testing with numerous specialists and labs. What a burden of care these individuals experience trying to communicate and coordinate in our fragmented system.
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