Healthcare is about connections. Patients and clinicians coming together to solve problems in an effort to improve people’s well-being. A smile of comfort. An intimate, compassionate conversation. Masking, physical distancing and other COVID-19 protocols have certainly made such connections much tougher.
As a patient at Princess Margaret Cancer Centre and a UHN Patient Partner, I have learned this over the past year. I have also come to realize the human connection at the heart of good healthcare is not only possible in a pandemic, it is more important than it ever has been — for patients, for caregivers, for staff.
I started coming to UHN five years ago. I was diagnosed at North York General Hospital with neuroendocrine tumour cancer. It is not rare, but it is uncommon. It took the life of Apple CEO Steve Jobs in 2011, and Aretha Franklin, the “Queen of Soul,” in 2018. It has metastasized in my liver, my lymph nodes and my bones. I chose Princess Margaret because there are doctors there who treat it, it is convenient to get to by subway and I did not want to deal with the parking at Sunnybrook.
The treatment has given me five more years of life, which has been wonderful. Over that time, I have had some good care, some excellent care, and some care I consider appalling. So, I explored ways that I could use my skill set as a retired teacher and elementary school principal, and exercise my passion for making things better for other patients. I learned about UHN Patient Partners, applied, went through an interview and was accepted. I have never looked back. It is fascinating, important, engaging work.
During the pandemic, the work by me and more than 130 UHN Patient Partners has been virtual and voluminous. We have been active in dozens of areas, including committees, focus groups, events, hiring panels, presentations and reviews at a corporate level, all hospital sites and the Michener Institute of Education at UHN. Even though it is on MS Teams or Zoom rather than sitting around a table or at the front of a room, I still feel patient participation changes the tone of the meeting for the better, adding a key element to the conversation that could be easily overlooked if it was only the “medical people” contributing. It is a sentiment I have heard echoed many times in numerous Patient Partner activities. It comes as no surprise.
As a teacher and a principal, I knew the importance of involving parents and students in education discussions. It makes sense for patients to be part of discussions in healthcare.
To be clear, these have not been easy discussions over the past year. I am one of two Patient Partners on the Clinical Activity Review Team (CART). The deep level of commitment and responsibility and angst to get things right has been evident around the virtual table from the start. When should things be ramped down? Ramped back up? How best to be ready for both? The amount of detail was astounding. How many people can line up in the hospital foyer? How long will it take people to get to appointments based on elevator capacity?
There were always charts, figures and intelligent questions. Even under the constraint of a one-hour meeting with a few dozen senior leaders, Patient Partners were always asked for our input. In turn, we always pointed out the impact the postponing of surgeries and procedures could and would have on patients, and the importance of keeping that front of mind.
These were tough decisions, awful decisions. I always felt there was a genuine desire to do the best for patients.
There are always going to be people who think things were not handled well, and I am sure that in some instances it was not handled as well as it could have been. But, from my perspective, everyone did the best they could with the information they had. I did not feel anything was cavalier or hard-hearted. Ever.
As a patient, my care has been almost seamless over the past year. Most of my regular appointments through Princess Margaret have been virtual. Some have been via the Ontario Telemedicine Network but I find I prefer phone calls. I find them to be more intimate and have a better exchange of ideas because I am not always glancing to the corner of the screen. I have never been afraid to go into Princess Margaret, Toronto General or Toronto Western when necessary. I have been in to have two MRIs, several CT scans, to participate in a clinical trial, for radiation treatments and numerous blood tests.
In some ways, I have had more access to my oncologist because I will email and get a call back the same day to discuss blood work or the results of the latest test, rather than waiting for the next appointment. There are also pluses to not having to go downtown for appointments in poorer weather and deal with the subway, though it was weird to be told over the phone that options for my treatment are coming to an end.
I know there have been hardships for other patients. The No Visitor Policy has been difficult for many. The thought of people dying with no family with them is horrible — for them, for their families, for the frontline workers.
Restricted access at the doors as patients come in for their appointments with family and friends is hard. Our Patient Partner Rapid Response Group reviewed scripts, posters, website content and other materials to make it easier for patients and their caregivers to understand and, we hoped, for staff to convey at the doors.
We helped in the design of an essential care partner option to get as many people as possible in to accompany patients. We also wanted to be sure if people were denied entry, they could appeal the decision, or at least talk to someone to better understand why it was made.
Anxiety levels are through the roof, so patients need as much information as they can get and in as easy and accessible a way as possible. It lowers their stress level, which makes things less stressful for staff.
UHN’s Patient Declaration of Values is a foundation for planning and providing care reflective of patient needs and priorities. Throughout the pandemic, it has served as the framework for changes implemented. It all comes down to human connections. Listening to patients, engaging them in the work of the hospital, makes them feel better about their care and more engaged with those delivering it. That has always been the case.
Now, in the middle of a healthcare crisis, it is especially true. It is that partnership, which will help us get through it. It is a two-way street. We must take care of each other.
Lyn Gaetz, a retired school teacher and principal, is a UHN Patient Partner and patient at Princess Margaret Cancer Centre.