Patients and Families and the Patient Complaint Process
I think a lot about the process for receiving, addressing and following up on difficult and negative patients experiences in healthcare. I think about it from our personal experience as a family and how patients and families are engaged in practices, programs and policies related to their difficult patient experience and patient safety. I think about it from the perspective of patients and families who choose not to speak up. I think about the families who did speak up and felt further harmed because of the process. I am inspired by those who spoke up and felt supported, guided, and left with a sense of resolution after going through a complaint process. I think of them as the lucky ones.
There is a lot to unpack with respect to patient safety and the possible role patients have to play. I think one key starting point are the current mechanisms in place to address difficult experiences commonly referred to as the “Compliments, Concerns and Complaints” process.
When a patient of family experience a challenging situation in a hospital or home care setting, a difficult interaction with a healthcare provider, an incident where a medical error occurred resulting in an injury, or an adverse event — they are faced with a significant and burdensome decision, “Should I complain?”.
The government of Ontario passed regulation 188/15 on September 1, 2015. The regulation falls under the Excellent Care for All Act (ECFAA), 2010. This regulation requires hospitals to have a specific patient relations process in place and ensure information related to these processes are made available to patients and families, and that the complaints process is directly tied to the quality improvement plan for the organization. Patients can complain as a current or former patient, and a family member, caregiver, and ‘substitute decision maker’ can make a complaint.
There are many resources and tools in place for hospitals to understand their responsibilities related to the patient complaint process.
The Ontario Hospital Association has a Patients Relations Toolkit that guides hospitals in establishing and evaluating a patient relations process, as well as how to communicate the process to patients and families.
Health Quality Ontario has published a couple of different guides for organizations to support the establishment a patients complaint process for hospitals and home care:
Engaging with Patients and Caregivers about Patient Relations: A Guide for Hospitals which details how hospitals can include patients and families in the development of “effective and inclusive” patients complaints process:
Striving for Excellence in Patient Relations Processes in Ontario Hospital’s reviews best practices in patient relations and provides insights to “driving improvement in patient relations”.
A Guide to Improving Complaints Processes in the Home and Community Care Sector outlines “guidance to enhance existing formal complaints processes using a quality improvement approach, while moving toward a more standardized approach across the province.”
The Ministry of Health and Long Term Care has also outlined guidance based on the Excellent Care for All Act concerning establishing a patients relations / patient complaints process which parallels the information from OHA and HQO.
A few things I learned in reading through the documentation related to establishing and reviewing a patient complaint process for healthcare organizations in Ontario:
• the principles of openness, transparency, timeliness, communication and compassion in a patient complaint process were reiterated frequently;
• organizations are also required under Section 2(2) of the regulation, to engage patients and their caregivers in designing, reviewing and maintaining the patient relations process;
• in terms of resolving complaints, the guidelines make suggestions that providers should or “otherwise be engaged” (not sure what that means) in the complaint process; and,
• 10 “principles for effective patient relations” are outlined based on international best practices (defined by Health Quality Ontario).
1. Safe & Open
Health care organizations must mitigate the power differential between complainants and the organization. Potential complainants must be reassured that their care will not suffer if they file a complaint.
2. Empowering
From when they file the complaint to the resolution of the issue the complainant is informed, empowered, and involved in the process.
3. Flexible
The complaints process and outcomes are flexible, responsive and adaptable to each complainants’ needs. Complainants must be treated as unique individuals with distinct needs. The need for flexibility may also arise due to the complexity of the organization.
4. Continuously Improving
The health care organization’s governing body must be committed to monitoring and reviewing its patient relations processes to continuously improve the quality of the services it provides.
5. Accountable & Transparent
The policies and procedures used in the Patient Relations process to review a complaint are clearly stated and are accessible and visible to both complainants and staff.
6. Supportive
The organization’s culture is one that supports both complainants and the subject of the complaint.
7. Confidential
Complainants’ personal information is protected from disclosure unless the complainant and the subject of the complaint give their consent to disclose it (except, as required by law).
8. Consistent
Decision-points, resolutions, and redress should be consistent in the patient relations process.
9. Efficient
The complaints system must respond to and address the needs, preferences, and anxieties of the complainant in a timely fashion.
10. Simple & Integrated
The complaints system must be easy to understand, and places the onus on the system and its agents — rather than the complainant — to navigate the complaints process.
It is important to consider that patient experiences do not happen in a vacuum and will not necessarily follow the ‘process’ for complaints as outlined by a healthcare organization. There are detailed diagrams that describe the Yes/No and If This Happens, Go Here steps in a patient complaint process by organizations. However, patient experiences happen in real time and are impacted by many factors. They happen at night, on the weekends, and can occur quickly. They often require immediate action and issues will occur before a ‘formal’ complaint can be made. They are often a result of poor communication or an experience of systemic failure within the organization. Structuring difficult or negative experiences according to a process that is bureaucratic and where the timelines are driven and guided by the organization can be difficult and burdensome for patients and families.
I would also like to see patient advocates in place to support the patient and family who are ‘arms length’ from the patient relations office and administration. In doing so, I feel we can ensure better support to the patient and family and ensure better impartiality while patient relations manages the patient complaint process. It would be a mistake to consider the office of patient relations as a support or resource to patients and families. These staff are in a very challenging role of straddling the organization they work for and are paid by, and balancing the interests of all parties involved in the complaint while supporting a patient or family member who is dissatisfied with the care they have received. I cannot imagine how impartiality can be maintained.
“Many do not complain b/c 1. Don’t know how to go about making complaints 2. If in pain they do not have the energy to deal with anything else then the pain. 3. Afraid to be treated differently. Bringing light to bad experiences can help make things better”. Quote from a patient
The Importance and Value of Patients Complaints
The key and essential elements of a patient complaint process in my opinion are timeliness, impartiality, transparency, and compassion. Those principles I talked about earlier that have been outlined in the guidance documents regarding effective patient relations processes. Having the right person(s) in the role to address patient complaints is important to ensure respect of what that patient or family has experienced.
It should not be lost on organizations and it is worth reminding them that patients and families who come forward with a complaint are courageous. As one experienced healthcare professional once said to me, “Where there is one you can be sure there are many others”.
“Accepting responsibility for your actions/decisions/mistakes is part of every professional’s code of ethics and the backbone of professional practice. We need to accept accountability during a patient complaints process.” Quote from a healthcare provider
The Reality for Patients and Families
It is not an easy thing to come forward with a complaint. Typically patients and families who have experienced a serious error in care or adverse event simply want to recover from that experience and get home. They are already traumatized and often too emotionally or physically exhausted to lodge a complaint. When they do feel ready, they might not be aware of how they can share their experiences, or perhaps they might feel too much time has lapsed. They can also feel guilty about not complaining and ensuring that a similar situation does not happen to another patient or family. Launching a complaint can be an emotional complex decision for a patient or family.
In many situations, patients and families do not complain because they don’t understand the process, and feel overwhelmed by it. Perhaps they are unsure about how to advocate for themselves, or run into language and cultural barriers.
In all honesty patients and families are not sure that there will be any real outcome for them as a result of their complaint. They feel investigations are kept behind closed doors and responses are thin and no real change will result from their complaint.
Patients and families have real concerns that they will be labelled as a ‘difficult patient/family’, and their relationships with the organization or care providers will be compromised. This has been acknowledge as a ‘perceived concern’ of patients and families in the guidance documents, but hasn’t been addressed directly as to how it should be proactively managed.
While patients and families are encouraged to come forward with a complaint and told an effective process is in place to address their complaint and support them, repercussions do happen. Whether this is overt or subtle, this is a reality for patients and families. Organizations need to be acknowledge this happens and be prepared to address these situations.
I would love to see a guide that is specifically written for and led by patients and families who have experience with the patient complaints process.
Patients and families that bring forward complaints and are willing to share their difficult experiences should be applauded by all of us who have and will continue to interact with the healthcare system. By coming forward, they are identifying gaps in how we are cared for, where the system is not working, and where healthcare providers can do better. Patients and families sharing their difficult experiences drive quality improvement, changes in policy and procedure, and improve patient safety within an organization.
“One question I did value from my own experience was “what do you want to see done from this?” during my complaint interview. But at the same time it’s a system that’s ready to be on the defence for anything.”
Quote from paediatric parent
“I feel like nobody at the hospital is an advocate for me. I have to be my own. Always scared to make anyone mad for fear as being labeled.”
Quote from a patient
Patients and families who come forward with a complaint could be better supported. There could be better transparency and openness in the complaints process to ensure patients and families are fully engaged and informed, as well as ensuring protection of their confidentiality and privacy. They could and should be actively engaged in that process. Patients and families describe themselves as having to be their own advocates in a patient complaints process, and feeling unsupported. In a formal complaint process within a healthcare setting there is a very real power imbalance. There is an inherent conflict of interest with an organization representing itself in a complaints process. When I examine how patient relations processes are proposed to be designed it concerns me that these processes are centered on the organization and their goals and not focussed on the most important participant, the patient and family.
“As is often the case of pediatrics you may be complaining about the one person, in your city, who specializes in your condition or illness. You’re risking damaging a relationship with the only group who can help. It’s like being held hostage.” Quote from a pediatric parent
Patient relations processes as they currently stand appear to be structured to ‘manage’ the situation from the organizational point of view. They are not there to establish a fundamental compassionate, transparent and timely response to a patient or family who have experienced a difficult situation. Patients and families often feel very exposed during a complaint process, they are unsure what is happening ‘behind the scenes’ as they wait months for a response to their complaint or what the next step might be. In many instances, patients and families do not feel their complaint was resolved to their satisfaction, but feel there is no recourse to address this. There is a certain trauma that patients and families experience in repeating and addressing their complaint with hospital administration and staff, yet there is nothing in the guidance documents that suggests a need for support of the patient and family.
“There is no one to represent the patient. Organizations support their own, no accountability or transparency. Zero support for pts. I tried to get admin to listen, now being avoided and punished for hurting their feelings. I can’t win. I’m really interested in starting a conversation about this.” Quote from a patient
“There is no one to help represent your needs during complaint process — you’re on your own. Things can be written about you that aren’t true. Who represents the patients in a complaint process?” Quote from patient
I truly believe we can do better. I also believe that healthcare organizations want to be more responsive to the needs of patients and families, and to learn from their experiences.
Here are the questions I have and the conversation I’d like to get started:
What research and evidence do we have about the effectiveness of the patient complaint process from the patient experience? What has worked well, and what can be improved from the patient and family perspective.
How open and transparent are patient complaints processes and do patients and families have the same access and right to information as the organization and healthcare providers?
How do we protect patients/families from being labelled ‘difficult’ or from repercussions, no matter how subtle, during a patient complaint process?
Who represents the patient and family in a patient complaint process?
Who is responsible for the narrative that occurs around these processes and for ensuring objectivity?
Can patients and families place their trust in a patient relations process that is centred within the organization, and would an arms length role be more suitable?
How effective is the Patient Ombudsman role and should this be expanded further?
I feel there is a better way to address the challenging and difficult experiences patients and families have faced. We can build upon the resources we have in place. If they are not doing so already, I suggest healthcare organizations will take the step of having an open and honest conversation with patients and families who have been through the complaint process and work with them to improve their patient complaint process. I think we can and I believe we should. Patients First is about a healthcare system where patients and families are at the centre of what we do, let’s make how you handle our difficult experiences a part of that conversation.
