Patient & Family Centred Care article to share

[A Former User]

Sharing here an excellent piece on Patient and Family Centred Care by Jennifer Johannesen. Though her lived experience is through the lens of a parent of a child with complex medical needs, her critique of PFCC and patient engagement applies just as much to the adult world.

http://johannesen.ca/2016/05/critical-look-family-centred-care/

Here is an excerpt:

"Although indeed the family may be at the centre of every deliberation, the family is only present and involved when invited.

I can see that health care providers work very hard to understand the family's perspective. But I can also see whose position is the dominant one, whose perspective is the de facto right or preferred one, who gets to define what the problem is, and most importantly, who holds the power to grant or remove decision-making opportunities.

It can sometimes be hard to tell the difference between ‘working with the family to get on the same page' and ‘identifying and breaking down resistance'."

[A Former User]

That was a really good article on PFCC Amy, and as I kept reading I thought I would add this excerpt from near the end of the piece for people who don't have much time. I think the following paragraphs also describe reasons for the lack of diversity among patient advisors.

The excerpt is from near the end.

"To be informed and empowered and to hold a seat at the table requires that the parent - typically the mother - has the skills, language, confidence, time and support to do so - all of which requires money and stability.

Who do we suppose has the resources to engage in this way? Consider single parents. People living in poverty or with low socioeconomic status. People with disabilities, or mental health issues, or people who don't speak English or people who don't understand the health care system. If these families have any hope of effective advocacy for children they have to work twice as hard to be heard. These families have far fewer options in caring for their children - especially if they have complex and chronic needs - because most simply do not have the luxury of time or relief from caregiving to put on their business suits and empower themselves.

I suppose I shouldn't be surprised this is how it goes. The system was designed this way. In order for health care institutions to keep ticking along efficiently, and to provide health care services to as many people as possible, responsibilities need to be externalized. Services and resources need to be rationed - often in the form of downloading work to family caregivers, who are an easily-exploitable free labour pool. To keep things moving, families need to be contained, managed and satisfied.

The rigid boundaries of the past, between family and institution, no longer work. So room for resistance and negotiation is now built-in and anticipated - this is the work of patient and family centred care. And this is where ethics, and the principles under PFCC, become instrumentalized. This is the comfort zone in which I and all the other super-moms operate - we get to say our peace, pick between pre-approved options, and emerge feeling like winners.

Someone close to me once asked, is it doing anyone any favours to point this out? To show that they're not really in control? Maybe this little fiction is okay if everyone feels satisfied. Believe me, I've thought about it.

My answer is no, this is not okay - especially considering what happens if you step outside the preset boundaries. This fiction only serves the ‘high-performing' people well. For parents who complain too loudly, or are non-compliant, or who aren't grateful and eager to please - tolerance is actually very low."

[A Former User]

Agree w-Annette McK comments w-thx. It is always challenging to be 'high performing' if patient or family care-provider is unwell and/or financially challenged on a daily. That situation results in isolation often not considered by the system. It leaves non-high performing individuals vulnerable to fear, anger, & exploitation. However, strength in the face of all this frustration while so difficult to overcome can be very empowering if met with some strategic successes.

Strategic success is hard to measure however & often interpreted as luck by the most vulnerable. Local community based care integration and support can help but often comes in the form of short term research based options that are not a longterm support system; but these initiatives do underscore continual need for patient involvement in health research.

[A Former User]

Anita, you bring up valuable points about how tricky it is to measure results, if vulnerable families will chalk up things going well to luck, instead of realizing tangible efforts of clinicians to try and include patients and families in a meaningful way.

I guess one also has to look at how diverse and inclusive the patients who are included in health research are. If we always go along with those who are most able to free themselves for Mon-Fri weekday availability, the needs of those who do not have that socio-economic capital will necessarily not be met...

[A Former User]

Patients (working full time or not) need trust in a PA as well as any other health care provider. Linking positive health system events to a health care provider of any type engenders trust but that takes a relationship w-the patient over time.

PAs often have to get their hands dirty (to use a gardening term) in order to engender trust. Not an easy task tho there are times when trust comes more easily than one might think when it comes to offering support to those in need. When it comes to research sometimes even a "very simple" signed patient research participation agreement can serve as a an entry handshake between friends does in the best of all possible worlds. Leading and ending a conversation w-a handshake (hug when appropriate) is a good thing in my experience but not used a lot in our germaphobic environment.