I’ve often thought we need a re-imagining of the concept and process for the ‘compliments and complaints’ process in healthcare and hospital settings. I’m not sure about any of you, but I was raised not to complain. Complaining was synonymous with griping and whining. It is defined as a “statement of disagreement or discontent” and often does not lead to a solution based conversation.
Complaints, as a function of their inherent nature, don’t often afford the opportunity to explore an issue and to have a meaningful conversation about what has occurred. They are statements that are typical to a consumer and customer oriented environment and truly aren’t suitable for the discourse required in a healthcare setting. They are seen as grievances and something to be ‘managed’ rather than entering into a possible resolution.
In my humble opinion, when patients, families and caregivers find the fortitude, energy and bravery to ‘complain’, they are truly looking for understanding, support, and to find a resolution to a serious issue they have encountered or experienced. They are also likely exhausted from their ordeal, nervous about expressing their concerns, and hopeful that someone will be willing to listen.
Complaints in healthcare don’t occur lightly. Patients and families are stressed and otherwise distracted with their own health and safety, or that of their loved one. Often they truly need to have an important conversation about the care they have experienced, but by the time they are well enough to have the energy, have navigated who they might raise their concerns with, and have returned home and to enough ‘normalcy’ to attend to the issues they faced, they decide to let the situation go unaddressed. It’s just too hard and they are too tired, or they’ve decided to just ‘let it go’.
In other instances, patients and families are fearful of raising a complaint. They feel they might suffer some form of repercussion from health care providers (doctors or nurses), or the healthcare setting (hospital administration, homecare, long term care). This was in fact a finding of Fearless: Listening, Learning, Leading, the Ontario Patient Ombudsman’s report in 2016–2017 .
In the stories we heard, people really do worry about reprisal and that their healthcare will be impacted if they speak up. (Ontario Patient Ombudsman Report 2016–2017)
Patients and families don’t want to risk compromising their healthcare provider relationships and having to navigate that, or suffer some sort of alienation of their care. This risk is real and true, and we need to be aware of it as a healthcare ecosystem of providers, patients, hospital administrators and healthcare policy leaders.
So what is their motivation? They don’t want a similar situation to occur again, or for it to happen to someone else.
Patient concerns are different than patient satisfaction. They have an important role to play and need to be welcomed and supported if and when they occur.
In a recent article by Adelstein Brown PhD, Dean and Professor Dalla Lana School of Public Health and Dr.Kevin Smith MD, CEO of the University Health Network, the opportunity of patient concerns (complaints) is explored as a method of “assessing health system performance”. The paper they examined for their blog post describes the ‘blindspots’ of the healthcare system; admission and discharge & transitions in care. From the article it is clear that ignoring patient concerns can lead to ‘near misses’ and ‘harm’, and that patient complaints have a unique role in the health care ecosystem learning and quality improvement cycle toward patient safety and better patient outcomes.
What is missing from the patient concern (complaint) discussion is the important and irreplaceable role of the patient, family and caregiver. When a patient complaint is received that has resulted in a near miss, harm, or an error resulting in death, rarely is the patient engaged in offering their knowledge and experience of the events. Patient safety investigations are taken over by an in-hospital committee (or intra-organizational group as it were). Patient records are examined closely, interviews with key staff are conducted, timelines are created, and critical event meetings might be held. What is missing? The patient version of events.
That is a huge miss. In an era of increasing patient engagement and partnership, it is something we should be addressing.
However, does the base nature of healthcare and physician training and accountability allow for an honest, open and transparent process? Why do the wagons still circle in many healthcare settings when a legitimate patient concern is raised? How can we support healthcare administrators and physicians to welcome a conversation and partner to take action together toward improving patient care? How do we support patients during an incredibly emotional time where their care and safety has been compromised and they have chosen to speak up?
There is a growing body of evidence that when things go wrong, patients and families should be included in the incident investigation. It is also clear that the majority of patients and families want to be part of this conversation. The question to health system leaders is how to move these conversations beyond a one-time interview event into a broader engagement and partnership opportunity that leads to a concern process that is open, transparent and a driver of health system learning and change.
Patient advisor Annette McKinnon recently shared this article, Patient and family engagement in incident investigations: exploring hospital manager and incident investigators’ experiences and challenges that notes the evolution of frameworks and a growing recognition by administrators and policy makers of the role patients and families should have in patient safety incident investigations. Interestingly they identify two streams as to why this important; the first is an ethical obligation to the family to support them, to recognize their anger and grief, and to reestablish trust that may have been broken as a result of the incident; the second is the existence of the valid knowledge and wisdom the patient and family have to share about their experience. A perspective that no one else on the care team could possibly have. The patient experience can serve as both ‘verifyable’ information and can elucidate different areas of investigation that might not have been considered.
In some instances, even with a patient-centred role in patient safety incident review, the patient story is still held to a ‘second best’ in deference to the account of the healthcare provider. The perspective of the professional is seen to carry more weight. I feel we need to carefully consider what it is across the culture of healthcare that supports that underlying premise and how it might be slowly changing or supported to change.
Secondly, a patient’s or their family’s account of the incident can sometimes prompt investigators to look further than the ‘factual’ technicalities of the incident:
R: The other day we investigated an incident, which was brought to our attention via a complaint. (…) The central research question in our investigation was, ‘was care delivered according to protocol?’ Obviously the patient wasn’t happy. (…) Everyone [investigators] was zooming in on the protocol but it was vague, could be interpreted from different angles. One professional thought this, the other expert and complains commission thought that. (…)
I: The investigators were stuck?
R: Yes. Our focus on the protocol just wasn’t going to help. So we turned it around and asked: ‘did we place this patient’s needs first? And did we follow up on those needs?’ (Committee Chair, no. 4)
In this example, the patient’s experience prompted the investigators to move beyond the technical specifics of the incident and embraced it as a driver for broader improvements.
The Patient Experience
Melissa became a patient advocate after an experience with her then toddler son who experienced a medication error that nearly ended his life. Melissa was clearly upset, perhaps even distraught, her pediatric hospital supported her in being involved in addressing this adverse event together and advising on change toward a patient engaged safety culture. In her words, she was “given a voice to provide constructive input on preventing medical errors.” Melissa is now a patient safety ambassador for her hospital and an active parent advisor. She regularly speaks about her experiences.
Many of us who are interested in the renewal of the healthcare system, digital health and patient safety have heard of the story of Greg Price (Falling Through the Cracks) from Alberta. Greg died of a treatable/curable testicular cancer, but due to delays in diagnosis, treatment and care that highlighted systemic gaps and challenges across the healthcare system, Greg did not receive timely care or treatment. His family were moved to share Greg’s story in a very unique way and in doing so, are profoundly shifting the perceptions of how our healthcare system functions and the impact of patient stories and experiences and how they can inform patient safety and a learning healthcare system. I am in awe of Dave and Teri Price and their bravery and unfailing spirit of sharing the breakdowns and miscommunications in the healthcare system that led to Greg’s death.
How did these patients and families find the courage and voice to come forward and what made their experience different from others who were less engaged with their patient safety experience? In Melissa’s case it was leadership from the pediatric hospital and a willingness to embrace her concerns and work with her to support working toward solutions.
For Greg’s family, the Health Quality Council of Alberta was able to independently investigate and review Greg’s care. Their review was not based on a hospital setting and the approach of the Price family toward a solution based review and storytelling has led to incredible insight and potential change into what happened to their son and brother.
As powerful and hopeful as these stories are, the healthcare system and healthcare leadership still have a long way to go to hear from patients and families who have had significantly challenging health care experiences and to learn from them. Here is my advice to them:
· Establish a clear policy to include the patient and family in complaint/concern process, patient safety review, adverse event investigations in an inclusive and transparent manner.
· Ensure patient/family are supported through a patient complaint/concern process with the patient/family well being as the first priority.
· Ensure you come with a plan as to how to include the patient story in a patient safety review. Be clear with the patient/family re: expectations and their role in the patient safety/investigation process.
· Consider a form of independent review and investigation for handling adverse events such as a patient ombudsman role that is separate from your administrative/clinical teams.
· Ensure equal weight to patient story and provider account.
· Analyze and publish patient complaint/concern data.
· Ensure all quality improvement committees have a patient/family representative.
· Offer an apology when a patient/family has endured a patient safety situation, adverse event, near miss etc.
Many patient concerns (complaints) occur because of poor communication and errors of omission. As a healthcare ecosystem, we need to do a better job and ensure a level playing field with respect to patient complaints/concerns and patient safety review, where patients and providers are communicating, where information is shared without access barriers, and where patients feel supported in raising their concerns about care.
We love to celebrate success stories across our healthcare system. Patients and families are vital to identifying systemic opportunities and challenges across the healthcare system. Would it not be wonderful to celebrate a challenging situation that was addressed and resolved in partnership with the patient?