For a generation, the health care system has been espousing patient and family centred care and the principles they entail. The belief that patients can participate as an equal partner with health care providers to pursue better outcomes and to maintain control. That is - until now.
So what exactly is patient and family centred care (PFCC)?
To give you the textbook answer:
This perspective is based on the recognition that patients and families are essential allies for quality and safety—not only in direct care interactions, but also in quality improvement, safety initiatives, education of health professionals, research, facility design, and policy development.
Patient- and family-centred care leads to better health outcomes, improved patient and family experience of care, better clinician and staff satisfaction, and wiser allocation of resources.
Source: Institute for Patient and Family Centred Care
In recent years, if you were to go to any health care conference, converse with policy experts or talk to any health care leader, you could quickly achieve agreement on these basic concepts. It is straight forward and intuitive. It just makes sense. That would be until a few weeks ago when COVID took all of those altruistic sentiments and threw them out the window. In a few short weeks, we have turned our backs on thirty years of progress and spat upon patients and their families.
But why? How can something with such a broad base of acceptance be so easily discarded?
There are likely many reasons but two significant issues come to my mind.
Care Doesn’t Happen in a Board Room.
In health care environments, we have gotten good at politically correct speech and empty platitudes. Unfortunately, this type of language lends itself very well to the board room - but not to the front line, where things get a lot more complicated.
Health care and patient-centred care look far different in a board room than it does in the critical care unit. Things take on a whole different meaning with a patient screaming in pain, gasping for air, or when they draw their last breaths. What does patient and family centred care look like in a crisis?
I assert that the reason PFCC failed during the COVID crisis is that those of us who carry the dubious title “patient advocate” made significant inroads with health care leaders. Still, in many cases, we never reached those groups who implement these ideas - at the front lines. In reality, patient and family centred care happen in quiet one on one conversations between the doctor and patient and likely in many more instances with the bedside nurse. PFCC is not about a policy statement or new rules. It is about an ingrained way of thinking about the patient and how every action is taken affects that patient, which includes that patient’s family. It has to be so entrenched that it becomes a reflex in the way we think, which brings me to my second point.
PFCC Was Never Embraced Where it Matters.
Despite the success of PFCC from a public policy perspective where the failure came was in the hearts and minds of front line providers. We have seen this in the example of blanket visitor restrictions. We have reverted to the default position that families at the patient’s bedside are accommodation - a nice gesture—something we will address when its convenient. A pandemic forces a decision to identify priorities, and families have been determined not to be a priority. Families are not considered part of the care team despite substantial data and research to support the concept that family support results in better outcomes and makes significant contributions to patient safety.
I have talked to several front line staff members. In the environment of the pandemic, many have reverted to old ways of thinking - that families can be inappropriate - can be a distraction - and certainly can’t be considered essential. Three months ago, comments like that would have been unthinkable. Now they are called the “new normal.”
The principle of families as “equal partners in care” sounded good - to abandon that principle shows me it was never wholly embraced—just something we said to make families feel good.
So What Now?
Not all is lost. Although what has happened over the past couple of months is disheartening, many people are working in health care who embrace a patient-centred system. Many well-drafted policies support patients and families. We’ve “talked the talk,” but now it’s time to “walk the walk.”
In small isolated corners of the health care system - change has happened - and it’s a beautiful thing to see. But how do we re-invigorate the discussion? It starts with your next visit to a clinic - your next trip to the emergency room. It begins by questioning the status quo.
Unfortunately, this is on you, patients. Lead, follow or get out of the way. That sounds harsh, but no one is going to give up authority or control willingly. Accepting sub-standard treatment is a choice. We all need to learn how to be better advocates (me included). We need to raise the bar. For those who are familiar with how to navigate the health care system - you may already be doing this. However, the vast majority of the population has no idea what goes on in health care, and those people need help when the inevitable day comes when they need to use the system. We need to show those who are unfamiliar with health care how to advocate for themselves and demand better care.
If a member of my family were admitted to the hospital today - despite a pandemic - I would never accept the idea that I could not be at their bedside. I can wear PPE. I can self-isolate. I can take all the necessary precautions to mitigate any risk—the same as any other staff member. The benefit of me advocating for a family member far outweighs any risk I present.
That’s a hill I’m willing to die on. Why? Because lives are at stake.