By Maureen Rulison
Caregiver Support and Resources, LLC
We prefer it, even if so much of it is centered around language alone. What is person-centered care? It’s a philosophy that empowers the individual at the center of care. Sometimes individuals, as couples later in life often prefer to trek the journey together.
How is it so empowering? We’ll give some examples:
- My life partner/care partner, Brian, lives with Alzheimer’s and vascular dementia. He hates being labeled as a “sufferer” of dementia. Negative language itself places him at a disadvantage. He’s not a “sufferer.” He simply lives with the disease.
- A wonderful woman living in an advanced-care facility complains about medication side effects. The doctor “in charge” of her care won’t listen and says, “It’s best for your condition.” Is it, though? With person-centered care, the woman directs her care, and it’s the doctor’s responsibility to use their expertise to find better options.
- A married couple agrees it’s time to research assisted-living homes. One spouse is becoming quite sick. The other is in great health. But they both wish to go in together. Their children disagree. Whose decision is right? With person-centered care, their choice should be honored because they believe being together improves their lives and care outcomes.
Person-Centered Care & Language Empowers the Individual
Now let’s break it down a bit further. It’s also referred to as person-focused or person-directed care. Tomato/to-mah-to – they accomplish the same thing: empowerment over care decisions and everyone’s God-given right to live and die with dignity.
A Voice & Choice in Care Decisions
Once upon a time, in a galaxy not so far away, medical professionals called all the shots. They analyzed, made a decision and ordered it done. Now, of course, there are still medical professionals who operate this way, but the overwhelming trend toward person-centered care is rendering those methods obsolete.
Yes, doctors, nurses and other pros in the continuum of care have years of education and experience that we must consider and respect. But who knows their body and mind better than the person living in it? Who knows how it feels? Who knows how it reacts? That’s right: you and/or the loved ones entrusted with care decisions. Care isn’t being given from a higher power. It’s being coordinated by equal voices. (Helpful hint: With some great life-care planning, person-centered care allows people to speak for themselves even after they can no longer speak.)
Person-focused language is compassionate. Our loved ones deserve that compassion – whether they’re aging in good health or bad. It’s fair. It’s balanced.
Terms like “caregiver” aren’t as fair and balanced as the person-focused term “care partner.” “Caregiver” connotes a superior relationship between a person who is “more capable” and one who “can’t care for themselves.” While “care partner” connotes an equal relationship – a “partnership in care.”
The list goes on:
- “Resident” – someone who lives in a place vs. “Patient” – someone dependent on care.
- “At risk for falls” – someone who may fall vs. “Falls risk” – a demeaning label.
- “Prefers not to” – expresses personal will vs. “Non-compliant” – a label of insubordination.
- “Facility” – an institutional setting vs. “home” – a place of comfort and healing.
Person-centered language removes labels and restores power where it should be: with the individual.
Building Your Circle of Support
What is person-centered care if not a way to mobilize the people, programs and professionals that’ll make life easier? The individual has the power. They know best. They know who knows them best and will provide the most effective and fulfilling life care.
Your loved one sits at the center of the care-partner circle. They receive care, of course, but with person-focused care, they have the most important job: directing care. Everyone else surrounding them – from siblings and spouses to doctors and faith leaders – play equally vital roles providing love, support, guidance and medical treatment.
Reversing the Stigma
Along the same lines as person-focused language, this care philosophy does a fantastic job changing negative perceptions about aging and illness. The stigma, if you will.
A lot of this stigma can be attributed to culture and media. It’s hard to feel good about oneself when the global narrative glorifies youth, beauty and fitness at every turn. Thus, recognizing age and illness as natural human processes becomes more difficult. Who wants to be seen as “ugly” and “frail”? But getting older isn’t ugly, and illnesses we don’t choose aren’t weaknesses. Person-centered care, in turn, recognizes and honors our loved ones living through the reality life throws at everyone eventually.
Different Strokes for Different Folks
Sometimes seeking alternative approaches and perspectives – thinking outside the box – yields better results. You’re correct in requiring other options and opinions. Under person-centered care, health professionals are obligated to use their expertise to provide those alternatives themselves (or at least indicate the right direction).
This empowers your loved one during doctor visits and other wellness consultations. Years ago, top-down approaches and one-size-fits-all treatments relegated care recipients to obedience. “Follow the doctor’s orders” was the common phrase. But no one, professional or not, should dictate care beyond the individual themselves.
So What is Person-Centered Care? It’s a Gateway to Better Care … On Your Terms
People aren’t defined by their care needs. Those who provide care aren’t in charge. The person-centered care philosophy – in both words and actions – restores power to the individual. Our good friends at the Pioneer Network and Eden Alternative have led these culture-change efforts for decades.
And here at Caregiver Support and Resources, LLC, we explore all paths to person-centered care through Board-certified Patient Advocacy, life-care planning and more. We’re happy to guide the process in a caring and compassionate way.
Email me at maureen@caregiversupportandresources to discuss your needs – because we value you as an individual.