PAN kicked off Canadian Patient Safety Week 2023 with a conversation on October 23 where PAN Community members looked at the changing views of patient safety. Clearly our Community of patient/caregiver partners has thought deeply about many aspects of safety. At a high level, we discussed the need to expand the notion of patient safety to include psychological and cultural safety. It was also clear that the healthcare system itself contributes to safety … or lack of safety. Here are the reflections that were shared.
The one-hour discussion surfaced three themes:
- Access
- Accountability
- Listening
Access – different aspects of access are key elements of patient safety.
Firstly, timeliness. People are being harmed because of long wait times. Illnesses are not diagnosed until it’s too late. There’s preventable suffering if surgeries can happen when they should. One participant said they want “proper healthcare in a timely fashion.”
Secondly, services. The big city centres are where many, if not most, services are located. Little thought is given to people who live in rural and remote areas. One participant brought up services like chronic pain injections that are only available in major centres. Add to that the frequency of the visits and it is almost impossible for many patients especially those without access to a vehicle or money or transportation support.
Thirdly, data. Patients need access to their data. This could empower patients to get more involved in their care. No one is more invested in a patient’s health than the patient themselves. There have been incidences of vital information that has been missed by healthcare professionals leading to harm. Patients need to be able to review their records and have a way to correct errors of fact.
Accountability provoked some new thoughts about safety.
Who is held responsible for not improving our healthcare system at the regional and provincial levels? We need to start holding people accountable to the promises they make as well as for where funds are going. There needs to be people at all levels that hear our concerns and provide a kind of “moral safety.”
People move around within the healthcare system and sometimes cross jurisdictions. Harms can come from their data not flowing along with them. Harm can come from transitioning across sites of care but complaints mechanisms are usually tied to single organizations like hospitals. Where is the system level accountability to the patient in those circumstances?
Listening has many aspects of safety.
Almost every participant spoke about listening as an element of patient safety. While there was a recognition that staffing shortages and time pressures challenged providers’ abilities to listen, be compassionate and be empathetic, this was still considered a key area of safety concerns. Systemically, providers need to be supported in taking the time needed to listen to their patients. Lack of this support contributes to unsafe care.
There’s a lack of listening and empathy especially when patients don’t fit the mold with regards to their health concerns. Patients and caregivers have expertise in their illnesses and need to be listened to so they can collaborate with providers in their care. However, there is a sense that the culture of healthcare lacks respect for patients as partners in their own care.
Lack of empathy can be a particularly acute issue if the patient has been a victim of violence in the past impacting their reactions and ability to trust. This can result in a lack of psychological safety.
Bias and outright discrimination based on race, culture, gender, age, mental health and even physical health conditions can result in unsafe or withheld care for too many. For some, hidden diseases like fibromyalgia or mental illness resulted in patients feeling like their concerns weren’t valid. One participant mentioned she would hide her illness when bringing up unrelated health concerns because she was afraid healthcare providers would dismiss them if they knew about her other illness. Older people, especially those starting in on dementia are often dismissed and not listened to. One person referred to this as “gaslighting”.
The lack of understanding, acceptance and respect for groups, especially First Nations and Métis, continues to be prevalent. Many cultures have different approaches that need to be understood and appreciated for people to trust in the care they receive. Too many people experience a lack of cultural safety and deep harms including death can be a result.
The discussion just touched the tip of the iceberg. We will carry it on within the PAN Community and within our collaborations as patient/caregiver partners. We can work together to make progress towards a safer environment for everyone.
With many thanks to contributions made by PAN members Wade Bittle, Ramona Bonwick, Diana Ermel, Trudy Flynn, Sandra Holdsworth, Elke Hutton, Alies Maybee, Anna Maynard, Ron Reddam, Donna Rubenstein, Candace Skrapek, Calvin Young