3:24am July 30, 2015

A doctor discovers an important question patients should be asked

withasmoothroundstone:

madeofpatterns:

specialsomeone212:

madeofpatterns:

dbd-jk:

cranquis:

sketchshoppe:
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

THE important question.

This.

I agree with the literal meaning of what’s being expressed here, but I think in context the article was written to promote a particular view of what care should look like.
Articles written in this particular tone have a slant. A hospice-related slant.
I’ve never seen an article about respecting choices tell the story of someone who said “I want to try everything that might help me survive” or “I want to investigate experimental treatment”. Or where someone asks for a feeding tube because of how exhausting their fight to eat has become.
(And, incidentally, someone who wanted physical therapy in an ongoing way would not get able to get it if they were on hospice. If you’re on hospice, only care considered palliative is covered; not care considered treatment. So, generally speaking, you can get a session or two with a PT, but you can’t get ongoing therapy. You can’t can’t generally get hearing aids, speech generating devices, or any other kind of personalized adaptive equipment covered. Hospice is always presented as a beautiful place where people’s choices are respected and they control the end of their life — but that’s only true for people with a fairly narrow range of preferences.)

There is another solution as well. It is expensive, but available. If the spouse is no longer living, there are independent geriatric case workers who, for a relatively smallish fee (a few hundred dollars a month) can set up the elder person with whatever services are available in their area, from weekly visitations to live-in help round the clock. As the elder Ages In Place, more services become available, until the need for hospice becomes evident. But the patient described was beyond those milestones, and ready for compassionate care, which he received from the doctor who was willing to ask the question this patient needed.

The article suggests through innuendo that this man was past the point of benefitting from treatment. The literal facts it describes do not suggest that.
The actual facts it describes are:
A man had heart failure and kidney failure
Management of his conditions was complicated (because treatment for one worsened the other)
Dialysis would have been an effective ongoing treatment, but he was unwilling to get dialysis
This isn’t a description of someone with an untreatable condition getting compassionate end of life care. It’s a description of someone who refused available treatment, and died as a result.
People have the right to refuse treatment for life-threatening medical conditions, but I don’t see that as something to celebrate.
Articles like this always celebrate someone’s decision to choose death. That’s the only choice that is depicted positively. Even further than that, it’s often depicted as the universal choice that all patients make when their choices are respected.
And, in real life, there are elderly men with renal failure and heart failure who are choosing dialysis and are happy with that decision. And there are elderly men who are refusing treatment and are happy with that decision. And there are people being coerced in both directions.
This article, and others like it, aren’t really about choices or patient autonomy. If they were, they would tell diverse stories about choices. They would tell stories of patients who chose to be treated, alongside the stories of patients who did not. But, they only ever tell the one story. That’s not what choice is.
When only the choice to refuse treatment is depicted positively, that’s not really a story about respecting and facilitating choices. It’s a story about encouraging patients to refuse treatment.
I’m all for patient directed goals and autonomy. And I wish that’s actually what this article was about.

I am so glad I read through this towards the end of the article.
When I talk about how my father eventually chose to end chemo because it wasn’t doing anything but making him sick and wasn’t making his (very, very terminal, metastatized everywhere) cancer any better… so many medical professionals I know nod sagely and mutter something triumphant about “you want quality of life, not quantity of life”.
And the thing is, that’s not what my dad was about, and that’s not what he was doing. He wasn’t acting on some kind of abstract principle of quality versus quantity. He didn’t even have a choice whether he lived or died. He just didn’t want to die sick from chemo that wasn’t working anyway. Continuing chemo would not have had any benefit to begin with, not even extending his life a little. Acting like he had much of a choice in the matter makes me really angry. So does acting like he chose death in some sort of noble way that upholds someone else’s principles. He chose the least shitty option of a lot of shitty options, and he really didn’t have much choice even then.
He was okay with his death in the end. And he died unafraid, at home, without pain, pretty much exactly how he wanted to die, and that’s wonderful. (He was afraid the pain would come back, but towards the end of his life, the pain just stopped for some reason. Maybe that part of his body had just shut down too far to feel it anymore.) But I would be really angry if the hospice movement or worse, the right-to-die movement (not that the two don’t have lots of intertwined connections that nobody wants to talk about), started using him as an example of their ideologies, because that’s not what he was about. He wanted to live as long as possible. He was just aware when the time came that he was truly dying and nothing was going to stop it, and he handled that as gracefully as he could manage.
People who are sick or dying, terminally or precariously ill, are human beings. We make choices about our lives. We are not simply bullet points to be used to prop up ideologies. And if people were really so big on choice, then what happened to me with my feeding tube (it wasn’t denied, they just tried everything to talk me out of it at a time when not getting it meant certain death) would never have happened. And my choice to get a feeding tube wouldn’t have been regarded as stupid or selfish. (Anyone hear the one yet where people who want to die are selfless and people who want to live with severe disability or terminal or precarious illness are selfish because we take up too much time, money, and effort, and the noble thing would be to choose death? Yeah, I’ve heard it way too often too.)
Anyway, thank you last couple posters for exposing the truth behind this story and the ideologies that make stories like this so common but their opposites so rare.
Another one I always hear: “We can keep people alive, but it doesn’t mean we should.” (headdesk)
I really hate how self-satisfied some medical professionals get, hearing of my father’s death. With the ugly platitudes about “quality of life not quantity of life” and the feeling that they know they’re right, they totally know they’re right, and they’re happy that my father chose what they think people should choose. When my father didn’t have any damn choice at all, he’d have chosen life if he’d been able to. The fact that he was actively dying, with cancer in nearly every part of his body they looked for it in, gets overlooked: there was no chance of a cure here. WTF. He didn’t die for anyone’s ideology any more than he lived for anyone’s ideology. He made a personal choice out of a number of equally shitty options, and he made it work for him, and his death was beautiful in its own way, but it was not anyone’s talking point. FFS.

If those doctors had succeeded in killing you, they’d probably have been congratulating themselves on ~respecting the patient’s choices~ or ~accepting our limitations as physicians~. When really all they’d be is murderers.