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.
