“Anne Kenny and Kathy Lee, were researchers in their mid-30s focused on user experience. They had been dispatched from headquarters in San Francisco to do a four-day anthropological deep dive, interviewing Japanese hosts, most of them designated “superhosts” — people who have excellent reviews from guests and are quick to respond to booking requests — to try to understand whether and how the San Francisco share-everything ethos works in a country like Japan.”
“What are your goals?”
Below is a moving piece by Mitch Kaminski, a family physician and medical director for AtlantiCare Physician Group in southern New Jersey. While he talks about patient-centered care from the perspective of end of life, the question should be applied to every patient.
As an applied anthropologist, I want to find ways to educate medical professionals about taking a patient-centered approach. Doctors are only one side of the equation, however. From the perspective of a consumer, my job is to share my goals with my physician, regardless of whether they ask or not. That means considering what those goals are, which can be scary. They might not match with my doctor’s goals.
I know I come from a generation more willing to question my doctors than my grandparents. I’ve learned to be an advocate for myself. But doctors still hold some of the highest status in our culture, and even though I’m fairly assertive, it can still feel hard to challenge my medical providers. I do it sometimes, but it’s not comfortable.
I want to challenge doctors to ask what patients’ goals are. I want to challenge myself to think and talk with my doctors about what mine are.
Mr. Dwyer isn’t my patient, but today I’m covering for my partner in our family-practice office, so he’s 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, Mr. Dwyer is eighty-eight. 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 Mr. Dwyer 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 Mr. Dwyer’s daughter, Karen, who has driven from Philadelphia, an hour away. She seems dutiful but wary, awaiting the clinical wisdom of yet another doctor.
After thirty years of practice, I know that I can’t possibly solve Mr. Dwyer’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.
“Mr. Dwyer, what are your goals for your care?” I ask. “How can I help you?”
My intuition tells me that Mr. Dwyer, like many patients in their eighties, 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 sixtieth wedding anniversary.”
Karen, looking tense, also faces her father and waits.
“I would like to be able to walk without falling,” Mr. Dwyer says. “Falling is horrible.”
This catches me off-guard.
But it makes perfect sense. With Mr. Dwyer’s 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.
Mr. Dwyer smiles. And Karen 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.
“Mr. Dwyer, 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.”
“We have services designed to help keep you comfortable for whatever time you have left,” I venture. “And you could stay at home.”
Again, Karen looks relieved. And Mr. Dwyer 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.
Although I never see Mr. Dwyer 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 Mr. Dwyer’s 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 Mr. Dwyer.
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 Mr. Dwyer’s 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: Ellen Dwyer.
“My family all thought I should see you,” she explains.
She too is in her late eighties 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.
“John 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:
“Mrs. Dwyer, what are your goals for your care, and how can I help you?”
About the author:
Mitch Kaminski is a family physician who has practiced, taught and led in primary care for thirty years. He is the medical director for AtlantiCare Physician Group in southern New Jersey. “Our technologically advanced medical system, which is oriented towards treatment and cure, often forgets to address the patient’s goals of care. As a provider, there is no easy time to acknowledge the end of life with a patient. I have come to realize that, especially with an elderly patient, any discomfort about the talk comes more from me than from the patient or the patient’s family.”
My friend who doesn’t believe in vaccinations is not crazy. She is a loving mom who has done her own research and come to her own conclusions. I don’t agree with those conclusions, but that doesn’t change how much I care about her. And it doesn’t change how smart I think she is.
It does, however, leave me curious about people who don’t want to vaccinate their children. Apparently I’m not the only one. This is an area that’s clearly ripe for anthropological research, as others in positions of influence have pointed out:
Heather Battles @anthroetc 38m
How anthropologists help medics fight Ebola in Guinea http://shar.es/1ajRcU via @SciDevNet by way of Amy Santee
I’ve probably said this before – and will undoubtedly say it again: I am passionate about applied anthropology because it helps to lift up voices of people that are often ignored. Too often programs, facilities, items, are designed without user input. My job as an applied anthropologist is to ensure that the people who are affected by that program, living in that facility, or using that device, are part of the design. This is a great example of what happens when user input is incorporated. I particularly love that the opinions of both patients and staff were incorporated, so that the environment works for everyone involved.
When a medical center decided to build new patient rooms, “management decided to design a mock patient room….Medical staff members and patients were surveyed. Nurses and doctors spent months moving Post-it notes around a model room set up in the old hospital.” They went beyond that, though. “Equipment was installed, possible situations rehearsed. Then real patients were moved in from the surgical unit — hip and knee replacements, mostly — to compare old and new rooms.”
The results, not surprisingly, were positive. “After months of testing, patients in the model room rated food and nursing care higher than patients in the old rooms did, although the meals and care were the same.”
But here’s the kicker, and why every organization and facility should incorporate user input:
“the real eye-opener was this: Patients also asked for 30 percent less pain medication.” The benefits: “Reduced pain has a cascade effect, hastening recovery and rehabilitation, leading to shorter stays and diminishing not just costs but also the chances for accidents and infections.”
One of the things I love about this article is that they include no information about the details of how they arranged the room. I love this because it reflects the truth that changes that made sense in this environment, for this population, this facility, these staff members, are not the same things that might make sense for a different setting and different population. It’s not about the results, in other words, it’s about the process.