#person centred care

[stonebutchooze]

whenever I say I worked at a care home people always assume I mean an OLD PEOPLE'S care home and start talking about dementia, and even when I correct them and say no, it was adults of all ages with disabilities like cerebral palsy, some of them younger than me, people still don't listen and start talking about how hard it is "when you get to that age".

like people who live in 24/7 care for their entire adult lives exist!!!! residential care is NOT something that only comes into play at the end of your life. lack of awareness and funding is, in my opinion, partly why negative experiences of full time or respite residential care are so widespread.

ALSO when I successfully clarify that I worked with people of all ages, people start talking about how SAD it is when young people who have conditions like cerebral palsy can't move or talk or whatever. and I ALSO take issue with that. I think seeing disabled people's experiences as wholly "sad" or "what a shame" pre-emptively dictates what kind of life we expect disabled people to live. people in residential care CAN be happy, largely independent, or happy with their level of control where they are dependent on others. if we assume they can't, we won't even try to help them get there.

some people have high support needs at home and then go into residential care. some people spend their whole lives in residential care. some people won't need it at all with proper support and funding at home. people need support, not pity and people seeing their lives as lost causes.

[basicallyahedgehog]

As an allied health professional working in community aged care, I CANNOT stress enough how important this is. And how much it means to people.

Today I visited a client for the first time. He had a couple of specific things he wanted from my interventions but it boiled down to one thing:

“If I can take some pressure off [wife], that’s what I want”

This is a man who is used to being independent and is now reliant on his wife for so much. He waters the garden from his wheelchair but needs his wife to unwind and rewind the house. His desire to have a retractable hose reel installed was not only about independence - it’s about doing something to care for his wife.

The FIRST thing any health professional should ask a person is what they would like to achieve from our services. And then we need to actually listen, and come up with a plan that best supports these goals.

A doctor discovers an important question patients should be asked

This patient isn’t usually mine, but today I’m covering for my partner in our family-practice office, so he has been slipped into my schedule.

Reading his chart, I have an ominous feeling that this visit won’t be simple.

A tall, lanky man with an air of quiet dignity, he is 88. His legs are swollen, and merely talking makes him short of breath.

He suffers from both congestive heart failure and renal failure. It’s a medical Catch-22: When one condition is treated and gets better, the other condition gets worse. His past year has been an endless cycle of medication adjustments carried out by dueling specialists and punctuated by emergency-room visits and hospitalizations.

Hemodialysis would break the medical stalemate, but my patient flatly refuses it. Given his frail health, and the discomfort and inconvenience involved, I can’t blame him.

Now his cardiologist has referred him back to us, his primary-care providers. Why send him here and not to the ER? I wonder fleetingly.

With us is his daughter, who has driven from Philadelphia, an hour away. She seems dutiful but wary, awaiting the clinical wisdom of yet another doctor.

After 30 years of practice, I know that I can’t possibly solve this man’s medical conundrum.

A cardiologist and a nephrologist haven’t been able to help him, I reflect,so how can I? I’m a family doctor, not a magician. I can send him back to the ER, and they’ll admit him to the hospital. But that will just continue the cycle… .

Still, my first instinct is to do something to improve the functioning of his heart and kidneys. I start mulling over the possibilities, knowing all the while that it’s useless to try.

Then I remember a visiting palliative-care physician’s words about caring for the fragile elderly: “We forget to ask patients what they want from their care. What are their goals?”

I pause, then look this frail, dignified man in the eye.

“What are your goals for your care?” I ask. “How can I help you?”

The patient’s desire

My intuition tells me that he, like many patients in their 80s, harbors a fund of hard-won wisdom.

He won’t ask me to fix his kidneys or his heart, I think. He’ll say something noble and poignant: “I’d like to see my great-granddaughter get married next spring,” or “Help me to live long enough so that my wife and I can celebrate our 60th wedding anniversary.”

His daughter, looking tense, also faces her father and waits.

“I would like to be able to walk without falling,” he says. “Falling is horrible.”

This catches me off guard.

That’s all?

But it makes perfect sense. With challenging medical conditions commanding his caregivers’ attention, something as simple as walking is easily overlooked.

A wonderful geriatric nurse practitioner’s words come to mind: “Our goal for younger people is to help them live long and healthy lives; our goal for older patients should be to maximize their function.”

Suddenly I feel that I may be able to help, after all.

“We can order physical therapy — and there’s no need to admit you to the hospital for that,” I suggest, unsure of how this will go over.

He smiles. His daughter sighs with relief.

“He really wants to stay at home,” she says matter-of-factly.

As new as our doctor-patient relationship is, I feel emboldened to tackle the big, unspoken question looming over us.

“I know that you’ve decided against dialysis, and I can understand your decision,” I say. “And with your heart failure getting worse, your health is unlikely to improve.”

He nods.

“We have services designed to help keep you comfortable for whatever time you have left,” I venture. “And you could stay at home.”

Again, his daughter looks relieved. And he seems … well … surprisingly fine with the plan.

I call our hospice service, arranging for a nurse to visit him later today to set up physical therapy and to begin plans to help him to stay comfortable — at home.

Back home

Although I never see him again, over the next few months I sign the order forms faxed by his hospice nurses. I speak once with his granddaughter. It’s somewhat hard on his wife to have him die at home, she says, but he’s adamant that he wants to stay there.

A faxed request for sublingual morphine (used in the terminal stages of dying) prompts me to call to check up on him.

The nurse confirms that he is near death.

I feel a twinge of misgiving: Is his family happy with the process that I set in place? Does our one brief encounter qualify me to be his primary-care provider? Should I visit them all at home?

Two days later, and two months after we first met, I fill out his death certificate.

Looking back, I reflect: He didn’t go back to the hospital, he had no more falls, and he died at home, which is what he wanted. But I wonder if his wife felt the same.

Several months later, a new name appears on my patient schedule: It’s his wife.

“My family all thought I should see you,” she explains.

She, too, is in her late 80s and frail, but independent and mentally sharp. Yes, she is grieving the loss of her husband, and she’s lost some weight. No, she isn’t depressed. Her husband died peacefully at home, and it felt like the right thing for everyone.

“He liked you,” she says.

She’s suffering from fatigue and anemia. About a year ago, a hematologist diagnosed her with myelodysplasia (a bone marrow failure, often terminal). But six months back, she stopped going for medical care.

I ask why.

“They were just doing more and more tests,” she says. “And I wasn’t getting any better.”

Now I know what to do. I look her in the eye and ask:

“What are your goals for your care, and how can I help you?”

-Mitch Kaminski

Source

[lilithofpenandbook]

Do you think that Snape, after being yelled at by McGonagall for showing her attitude and somehow the fight escalating to their past when Snape was a child, and told that if he was actually traumatised by her actions, he'd be afraid of her, not rude to her, would lock himself in his room and cry, cry, cry, because despite the fact that he fought back and screamed that he IS traumatised, that she DID hurt him by not being there, that she IS responsible for him being this way, he isn't sure? Because every single person around him tells him that he's the problem. That he's rude. That it's his fault the other party was offended. Even though he didn't mean to be rude, he was just being him, but surely he's the problem if everyone's saying it? Or maybe he's surrounded by the wrong people? Or maybe he is wrong, and he is a horrible person, he is a piece of trash, he's wrong and just stubborn?

Do you think that sometimes he doesn't even know if he's right or wrong? That he doesn't even care, all he knows is that he's so, so angry, he's in so, SO much pain, he wants to scream, he wants to cry, it all hurts and no one's coming to make it better and he can never get it out, he can never truly vocalise it because the words won't come, and he looks hysterical, insane, and selfish.

He's just tired.

[fure-dcmk]

baby heiji

[evie-doesnt-write]

Late seasons Sam hate is like a special kind of bad to me… Like literally there’s nothing to complain about him, so people will grasp the thinnest of straws…

[whatdoinose]

as a osdd system i feel incredibly isolated in system communities not only cuz theyre so alter-based but also. every fucking OSDDID specific space is founded because they don't like endos and not cuz they just wanna have a nice supportive place for OSDDID folk. its incredibly stupid. like what are we even doing atp?

[housederiva]

Fellow ace here! I'm not demi, but I fit under the umbrella as aegosexual (a term I only learned a year ago! Fun times!).

Since anons were being mean, I wanted to say hi!

Aw thank you for sharing also hi we're hanging out under the same umbrella isn't that neat! xx

[birdaquiver]

big fan of characters who understand each other so well that they are able to use each other’s weaknesses against each other. characters who have been inseparable for so long (whether they like it or not) that they’ve witnessed each other’s crest and fall and studied each other’s dispositions like specimens beneath glass. as a result they’ve crawled into the cracks in each other’s skin & mapped out the soft underbelly hidden beneath all that confidence and pride. so now they’re calling out the other person’s most shameful flaws, sniping at the most sensitive bits of scar tissue they try so desperately to hide, digging out their most humiliating memories or those filled with grief.

if you’re lovers or close friends, then you’re forced to realize that yes, to be loved is to be known, but to be known is also to flay yourself open. you cannot declare yourself above the risk of having someone take advantage of your wounds & you cannot transcend the vulnerability that comes as love’s collateral damage

if you’re enemies… then all i can say is that the sweet respite of enduring coexistence for so long is that you know precisely how to take each other apart. you know how to play the other like putty beneath your fingertips by tugging at their pain points, and that in itself is a glorious thing—but equally so, the knowledge that they can enact the exact same thing on you is inordinately terrifying

[coockie8]

i once had an anti tell me to stop sexualizing their trauma on a story i wrote that was a word for word retelling of my own actual trauma but with names changed and its been 2 years and i still cant stop thinking about that

Ah, yeah... Unfortunately a non-insignificant number of antishippers seem to genuinely believe they own the concept of trauma, so any story they read that they believe to be portrayed in a romanticized or sexualized light therefore must be romanticizing/sexualizing their trauma specifically.

I couldn't tell you the amount of times I've gotten the "stop sexualizing my trauma!!!!!!" or adjacent comments from antishippers that universally garner a response that basically boils down to

Like, bitch! I'm talking about my trauma! I literally did not even know you existed until you fucking commented!

[aerithisms]

rotating the pub scene from 73 yards in my mind i think there is so much being said there about wales and welsh/english tension that is so interesting and is going so under discussed

[soup-mother]

it's just like... every single day someone has to explain "it is going to be harder to immigrate to Australia than you seem convinced it is" and every single time it comes as such a fucking shock to these people.

[faaun]

i feel rly sad and conflicted abt one of my best friends on earth but idk who to ask for advice bc i usually would have consulted her in this situation lmao

[widevibratobitch]

omw to play emotional support for my mom disguised as ✨fun family bonding time✨ for the rest of the week <3333 there's something so deeply wrong with me uwu teehee

[fridayiminlovemp3]

do i believe that taylor and karlie kissed at the 1975 concert in 2014 … well that’s one secret i’ll never tell xoxo

[girlivealwaysbean]

hey god if you've created someone for me can you introduce me to them sooner? i kinda need them now

[staryinghao]

sun yinghao getting sooo much screentime during the KGMAs we love to see it <3