Canadian Patient Safety Week runs from October 28 to November 1, 2019. The Canadian Patient Safety Institute invites all Canadians – the public, providers and leaders – to become involved in making patient safety a priority.
Patients and Families as Partners in Training
Donna Davis’ journey, as is the case for many patient partners, started from a place of pain and of hope. Pain was caused by losing her son Vance to preventable harm. He was only 19 years old when stereotyping, absence of handover, absence of communication between providers, lack of recognition of a serious head injury, and failure to listen to her concerns contributed to his death. The hope was that the lessons learned from his death and how the incident was managed (absence of disclosure and accountability) would shape changes that prevent others from suffering the same way.
That hope drove Davis and many other patients and families impacted by harm to join a community of kindred spirits who share the same vision. They formed Patients for Patient Safety Canada (PFPSC) in 2006, a community of patient partners united by a pledge for partnership on a mission to make care safe for all.
The Patients for Patient Safety London Declaration states: “In honor of those who have died, those left disabled, our loved ones today and the world’s children yet to be born, we will strive for excellence, so that all involved in healthcare are as safe as possible as soon as possible. This is our pledge of partnership.
PFPSC is the patient-led program of the Canadian Patient Safety Institute (CPSI) and the Canadian arm of the World Health Organization (WHO)’s Patients for Patient Safety Global Network.1 The relationship with CPSI and WHO was and continues to be a fundamental success factor. Their vision is “Every Patient Safe” and unfortunately, they know they are a long way from achieving that goal. Each year 28,000 Canadians die from preventable harm in the health system. Thousands more suffer the consequences of harm.
Since PFPSC’s inception it has contributed to the training of hundreds of providers, leaders and patient partners in many ways, including sharing experiences with graduate and undergraduate students at Universities and Colleges across Canada and the world (e.g. videos, in-person and virtual presentations); and partnering with those who design curriculum and training programs for students as well as continuing education for providers and staff (e.g. Patient Safety Education Program – Canada); who design simulation programs (e.g. SimOne); and who define safety competencies, standards, policies and practices (e.g. Safety Competencies Framework).
PFPSC asks that the following components are included in every training opportunity.
First, do no harm – partner with patients and families to prevent incidents
Diagnosis and Treatment
Safety begins at the point of care. Therefore, is important to involve the patient, and if appropriate, the family in all decisions which are being made about treatment options. One way to achieve this is by sharing information about the diagnosis in a way which is understood by the patient. Reduce medical jargon, choose a setting which is quiet and conducive to the patient being able to ask questions, and engage an interpreter if language is a barrier to understanding. If you do not have the answers to some of the questions let the patient know that. Follow up with the answers when you have them.
Once the diagnosis is confirmed and understood, describe treatment options and inquire about the patient’s preferences. The preferences of the patient and family need to be foremost in any decisions which are made. If there are differences of opinion between the patient and the medical team, take the time to understand the patient’s concerns and reasons for their preferences.
A good example of an approach which engages patients in all aspects of their care is the model called Enhanced Recovery after Surgery.2
Communication and Coordination of Care
When you are treating a patient, it is extremely important to truly listen to what the patient and family are saying about the situation. PFPSC members have learned from bitter experience the consequences of the health care team not listening to feedback from a family member, like the death of the 22-year-old daughter of one of our other members, Maryann Murray. Listen to her describe the situation which caused Martha’s death and please reflect on how hard it was for Murray to really find out what had happened to her daughter.
Communication between health care providers is critical to ensure the safety of patients in your care.
Second, do not harm us again – partner with patients in incident management
Communication After an Incident – Disclosure
The situation described by Murray brings us to the topic of disclosure if harm has occurred.3 As soon as harm is known it must be communicated to the patient and family. The unnecessary delay of disclosure results in more harm to the patient and family. This second harm can be prevented. Ensure that there are supports in place for the patient and family. These supports could include assistance in navigating the system, counselling services and financial support if required. Apologize to the patient and family for the harm and help them understand how it happened and what is being put in place to ensure that this same situation does not reoccur with another patient.
Keep the patient and family apprised of the investigation into the harm. Many of the PFPSC members, including Allison describe the fight they had within the system to find out what happened to themselves or a family member. Some have still not discovered all the details of the harm that they received. This is unacceptable.
“It’s easier to forgive the doctors for our daughter’s death than to forgive them for how they treated us after her death.” said Tanya, one of the PFPSC members, eloquently articulating what patients and families expect after an incident.
Engagement of Patients in all Care Decisions and all System Levels
Patients and their families have very important insights to share at all levels of the organization. Many patients are involved in the education programs of students and staff, giving lectures and telling their stories of harm in order to alert future practitioners of the importance of patient safety. Donna Penner experienced every patient’s worst nightmare: she was prepped for surgery, given a general anesthetic and drifted off into sleep only to regain consciousness when the surgery started. She now shares her experience and safety lessons learned with medical and nursing students twice per year as part of their curriculum in Manitoba Professional Education Programs.
At the organizational design and governance level, patient surveys about their care experience should be done, and issues identified as well as addressed. Patients should be involved as partners/advisers on most hospital committees and boards and involved in co-leading hospital safety committees. At the policy-making level, focus groups with patients should inform decisions, and patients should be involved in establishing research priorities. The Engaging Patients in Patient Safety – a Canadian Guide provide practical guidance.4
It is relatively easy to engage with patients who are well educated, speak your language and who come from the same background as most health care providers. However, it is the patients who do not meet that profile who are most vulnerable and need additional help in engaging with their treatment and health care providers. It is imperative that all patients, regardless of their circumstances or backgrounds, have the same opportunities to be involved in their treatment decisions and in the development of policies which affect them. These people need their voices heard. Address the barriers to true involvement in care. Use interpreters or cultural specialists if required. Choose settings for discussions which are inviting and reduce fear and anxiety. Be aware of unconscious bias against those who are not like you. Learn from Samaria’s journey from harm to hopeless and to empowerment.
As a care provider, it is your professional responsibility to reach out to, and engage with everyone who comes to you for care. Find ways to reach those who seem unable to comprehend their diagnosis or treatment options. Be open to questions and answer as best you can. For example, consider the Five Questions to Ask about your Medications.5
As educators and leaders, it is your responsibility to create an environment where patient engagement in patient safety is easy to do. Patients are strong partners who are motivated to engage for the long haul. Nurture a supportive, respectful relationship between health care providers and their patients to ensure safe care, patient and staff satisfaction, and financial savings.
It takes a lot of courage to conquer silence and improve safety, but we need to find a way to speak up. “The silence so many of us encountered affects us to this day — it is a huge part of our stories — a very huge part of mine,” said Donna. We hope you can join us during Canadian Patient Safety Week and you will join patient safety efforts in your area.
Patients for Patient Safety Canada is dedicated to improving safety. Look for dedicated patient partners and patient groups in your region. Together we can contribute to the education of health care professionals, the development of safety policies and resources and the engagement of all people – including the public and politicians – in patient safety improvements.
About the Author
Linda Hughes is a Co-chair of Patients for Patient Safety Canada.
Ioana Cristina Popescu is a Senior Program Manager with the Canadian Patient Safety Institute.
1. Patients for Patient Safety Canada. Patients for Patient Safety Canada. Edmonton, AB: Canadian Patient Safety Institute; n.d. https://www.patientsafetyinstitute.ca/en/About/Programs/ppsc/Pages/default.aspx.
2. Canadian Patient Safety Institute. Enhanced Recovery Canada – Enhanced Recovery After Surgery. Edmonton, AB: Canadian Patient Safety Institute; n.d. https://www.patientsafetyinstitute.ca/en/toolsResources/Enhanced-Recovery-after-Surgery/Pages/default.aspx.
3. Disclosure Working Group. Canadian Disclosure Guidelines: Being Open with Patients and Families. Edmonton, AB: Canadian Patient Safety Institute; 2011. https://www.patientsafetyinstitute.ca/en/toolsresources/disclosure/pages/default.aspx.
4. Patient Engagement Action Team. Engaging Patients in Patient Safety – A Canadian Guide. Edmonton, AB: Canadian Patient Safety Institute; 2018.
5. Institute for Safe Medication Practices Canada, Canadian Patient Safety Institute, Patients for Patient Safety Canada, Canadian Pharmacists Association, Canadian Society of Hospital Pharmacists. 5 Questions to Ask About Your Medications. Toronto, ON: Institute for Safe Medication Practices Canada; 2016.