Saturday, September 28, 2013
I advised the high school literary magazine, started a peer-tutor writing center, and attended and often led writing workshops and professional development sessions. I published articles about teaching along with some poetry and a short memoir of my mother-in-law. I also mentored adult writers.
I have been sick with ME/CFS since a flu shot in 1999. After experiences with many, many doctors, I am currently seeing Dr. Ray and Dr. Klimas at the Center for Neuroimmune Disorders at Nova Southeastern University in Florida and taking Immunovir and Atenolol. My condition has clearly improved since the early years, but I still experience significant relapses and suffer from (sometimes severe) Post-exertional Malaise. In between the relapses, however, my "well" times are longer and "well-er".
Friday, September 27, 2013
Yet by then, considerable damage has already been done. Nearly half of medical students become burned out during their training. Medical education has been characterized as an abusive and neglectful family system. It places unrealistic expectations on students, keeps them sleep-deprived, overstressed, and in a state of fear of making mistakes, and sends the message that doubts or grief should be kept to oneself. While the training formally espouses the ethics of empathy, compassion and altruism, doctors and researchers say that the socialization process — the "hidden curriculum" — teaches something very different: stay detached, objective, even a little cynical. Five out of six doctors say that medicine is in decline and close to 60 percent would not recommend it as a career for their children (pdf).
This is not how doctors are accustomed to managing grief and loss. "We intellectualize it, minimize it, become numb to it," O'Donnell said.
"Remember: always slow," Volandes says.
"Sure, hon," Davis says, annoyed. She has done this many times.
Volandes claps to sync the sound. "Take one: Goals of Care, Dementia."
You are seeing this video because you are making medical decisions for a person with advanced dementia. Davis intones the words in a calm, uninflected voice. I'll show you a video of a person with advanced dementia. Then you will see images to help you understand the three options for their medical care.
Her narration will be woven into a 10-minute film. The words I'm hearing will accompany footage of an elderly woman in a wheelchair. The woman is coiffed and dressed in her Sunday finest, wearing pearls and makeup for her film appearance, but her face is vacant and her mouth is frozen in the rictus of a permanent O.
This woman lives in a nursing home and has advanced dementia. She's seen here with her daughters. She has the typical features of advanced dementia …
Young in affect and appearance, Volandes, 41, is an assistant professor at Harvard Medical School; Davis, also an M.D., is doing her residency in internal medicine, also at Harvard. When I heard about Volandes's work, I suspected he would be different from other doctors. I was not disappointed. He refuses to let me call him "Dr. Volandes," for example. Formality impedes communication, he tells me, and "there's nothing more essential to being a good doctor than your ability to communicate." More important, he believes that his videos can disrupt the way the medical system handles late-life care, and that the system urgently needs disrupting.
"I think we're probably the most subversive two doctors to the health system that you will meet today," he says, a few hours before his shoot begins. "That has been told to me by other people."
"You sound proud of that," I say.
"I'm proud of that because it's being an agent of change, and the more I see poor health care, or health care being delivered that puts patients and families through—"
"We torture people before they die," Davis interjects, quietly.
Volandes chuckles at my surprise. "Remember, Jon is a reporter," he tells her, not at all unhappy with her comment.
"My father, if he were sitting here, would be saying 'Right on,' " I tell him.
Volandes nods. "Here's the sad reality," he says. "Physicians are good people. They want to do the right things. And yet all of us, behind closed doors, in the cafeteria, say, 'Do you believe what we did to that patient? Do you believe what we put that patient through?' Every single physician has stories. Not one. Lots of stories.
"In the health-care debate, we've heard a lot about useless care, wasteful care, futile care. What we"—Volandes indicates himself and Davis—"have been struggling with is unwanted care. That's far more concerning. That's not avoidable care. That's wrongfulcare. I think that's the most urgent issue facing America today, is people getting medical interventions that, if they were more informed, they would not want. It happens all the time."
Unwanted treatment is American medicine's dark continent. No one knows its extent, and few people want to talk about it. The U.S. medical system was built to treat anything that might be treatable, at any stage of life—even near the end, when there is no hope of a cure, and when the patient, if fully informed, might prefer quality time and relative normalcy to all-out intervention.
In 2009, my father was suffering from an advanced and untreatable neurological condition that would soon kill him. (I wrote about his decline in an article for this magazine in April 2010.) Eating, drinking, and walking were all difficult and dangerous for him. He ate, drank, and walked anyway, because doing his best to lead a normal life sustained his morale and slowed his decline. "Use it or lose it," he often said. His strategy broke down calamitously when he agreed to be hospitalized for an MRI test. I can only liken his experience to an alien abduction. He was bundled into a bed, tied to tubes, and banned from walking without help or taking anything by mouth. No one asked him about what he wanted. After a few days, and a test that turned up nothing, he left the hospital no longer able to walk. Some weeks later, he managed to get back on his feet; unfortunately, by then he was only a few weeks from death. The episode had only one positive result. Disgusted and angry after his discharge from the hospital, my father turned to me and said, "I am never going back there." (He never did.)
What should have taken place was what is known in the medical profession as The Conversation. The momentum of medical maximalism should have slowed long enough for a doctor or a social worker to sit down with him and me to explain, patiently and in plain English, his condition and his treatment options, to learn what his goals were for the time he had left, and to establish how much and what kind of treatment he really desired. Alas, evidence shows that The Conversation happens much less regularly than it should, and that, when it does happen, information is typically presented in a brisk, jargony way that patients and families don't really understand. Many doctors don't make time for The Conversation, or aren't good at conducting it (they're not trained or rewarded for doing so), or worry their patients can't handle it.
This is a problem, because the assumption that doctors know what their patients want turns out to be wrong: when doctors try to predict the goals and preferences of their patients, they are "highly inaccurate," according to one summary of the research, published by Benjamin Moulton and Jaime S. King inThe Journal of Law, Medicine & Ethics. Patients are "routinely asked to make decisions about treatment choices in the face of what can only be described as avoidable ignorance," Moulton and King write. "In the absence of complete information, individuals frequently opt for procedures they would not otherwise choose."
Though no one knows for sure, unwanted treatment seems especially common near the end of life. A few years ago, at age 94, a friend of mine's father was hospitalized with internal bleeding and kidney failure. Instead of facing reality (he died within days), the hospital tried to get authorization to remove his colon and put him on dialysis. Even physicians tell me they have difficulty holding back the kind of mindlessly aggressive treatment that one doctor I spoke with calls "the war on death." Matt Handley, a doctor and an executive with Group Health Cooperative, a big health system in Washington state, described his father-in-law's experience as a "classic example of overmedicalization." There was no Conversation. "He went to the ICU for no medical reason," Handley says. "No one talked to him about the fact that he was going to die, even though outside the room, clinicians, when asked, would say 'Oh, yes, he's dying.' "
"Sometimes you block the near exits, and all you've got left is a far exit, which is not a dignified and comfortable death," Albert Mulley, a physician and the director of the Dartmouth Center for Health Care Delivery Science, told me recently. As we talked, it emerged that he, too, had had to fend off the medical system when his father died at age 93. "Even though I spent my whole career doing this," he said, "when I was trying to assure as good a death as I could for my dad, I found it wasn't easy."
If it is this hard for doctors to navigate their parents' final days, imagine what many ordinary patients and their families face. "It's almost impossible for patients really to be in charge," says Joanne Lynn, a physician and the director of the nonprofit Altarum Center for Elder Care and Advanced Illness in Washington, D.C. "We enforce a kind of learned helplessness, especially in hospitals." I asked her how much unwanted treatment gets administered. She couldn't come up with a figure—no one can—but she said, "It's huge, however you measure it. Especially when people get very, very sick."
Unwanted treatment is a particularly confounding problem because it is not a product of malevolence but a by-product of two strengths of American medical culture: the system's determination to save lives, and its technological virtuosity. Change will need to be consonant with that culture. "You have to be comfortable working at the margins of the power structure within medicine, and particularly within academic medicine," Mulley told me. You need a disrupter, but one who can speak the language of medicine and meet the system on its own terms.
I explained that I would need a toilet with bars to permit me to lift myself and a water closet that would permit access in a wheelchair.
My hosts looked at one another and then, with some embarrassment, told me there was no such bathroom in their building. The Americans with Disabilities Act exempts private clubs. They asked for time to consider how to solve the problem. After a few days the club leadership graciously agreed to alter a bathroom to suit the disabled. I hope my little talk proves worthy of their efforts. I am sure others will be grateful for the redone bathroom.
When I arrived at a Florida medical facility for some X-rays, I discovered that my wheelchair was too wide for the office front door. There were some awkward minutes while the poor receptionist scurried about to get me and my chair inside. I had to wonder how a medical office could have been designed to preclude easy entry by a person using a wheelchair.
When I went to see a surgeon at a major orthopedic hospital in New York, I discovered how difficult it is to get into and out of even a proud and caring institution. The turning axis of a wheelchair is quite large and the transition from the waiting room to the X-ray room was replete with tight 90-degree turns. Even well-intentioned legislation cannot specify what is needed to accommodate those of us who are made to feel subhuman by unintentional failures to provide suitable facilities.
I know all the excuses. In one major New York hotel, the bathroom had a tub with a built-in shower. There were bars around the rim of the tub, but it would have been impossible for me to climb into or out of it. The manager told me the hotel had only one true handicap room but the person using it had overstayed one night. The hotel assigned me to what they hoped would be a satisfactory alternative. It wasn't.
I once asked the CEO of one of the major hotel chains why there wasn't more attention paid to the handicapped traveler. His candid reply was instructive. "There are not many people like you visiting the top-level hotels," he explained, "so it does not make business sense to cater to the handicapped."
That surely explains some of what I have experienced. Yet there are small adjustments that would not require either great expense or major alterations.
I begin by urging the wide acceptance of toilet facilities with suitable bars and seats about four inches higher than normal. I know the cost of such a bathroom isn't great and the comfort and security such equipment offers the handicapped is enormous.
I'm stunned by the number of doors in offices and other public places that aren't wide enough for my wheelchair—and by the number of door sills that make wheelchair use difficult.
If the doorways were constructed to make it easy for the wheels of my chair to slide over the sills, the awkward occasions when the chair is unable to cross the sill would be avoided.
I'm not looking for sympathy, only better understanding. Modern medicine is keeping us all older for longer. It makes sense to try to ease the way for those of us who cannot walk. Riding in a wheelchair can permit me new vistas but I need some help in some small ways. The big stuff, including ramps and elevators, is done and welcome. I think the little things require little more than some good people paying attention.
Mr. Vincent is a former CEO of Columbia Pictures Industries and commissioner of Major League Baseball.
According to the nurse's note, the patient had received a clean bill of health from his regular doctor only a few days before, so I was surprised to see his request for a second opinion. He stared intently at my name badge as I walked into the room, then nodded his head at each syllable of my name as I introduced myself.
Shifting his gaze upward to my face, he said, "I'm here, Doc, to make sure I don't have anything serious. I'm not sure my regular doctor was listening to everything I was trying to tell him."
I smiled. To hide my embarrassment.
I had walked into the exam room to listen to this patient; but my mind was a few steps behind, as I struggled with thoughts about the colleague who'd just snapped at me over the phone because she was in no mood to get another new consult, my mounting piles of unfinished paperwork, and the young patient with widespread cancer whom I'd seen earlier in the day. Thoughts about my new patient jumbled in the mix, too, but they came into focus only after I had pushed away the fears that I might have neglected to order a key test on my last patient, that I'd forgotten to call another patient and that I was already running behind schedule.
Research over the last few years has revealed that unrelenting job pressures cause two-thirds of fully trained doctors to experience the emotional, mental and physical exhaustion characteristic of burnout. Health care workers who are burned out are at higher risk for substance abuse, lying, cheating and even suicide. They tend to make more errors and lose their sense of empathy for others. And they are more prone to leave clinical practice.
Unfortunately, relatively little is known about treating burnout. Butpromising research points to mindfulness, the ability to be fully present and attentive in the moment, as a possible remedy. A few small studies indicate that mindfulness training courses can help doctors become more focused, more empathetic and less emotionally exhausted.
But two important questions remain unanswered. How does mindfulness affect patients? And who really has the time to enroll in training courses that can take several weeks or longer?
The studies in The Annals of Family Medicine attempt to answer those questions.
In one study, researchers first assessed the baseline mindfulness of 45 doctors, nurses and physician assistants by asking them to respond to statements like, "I tend to walk quickly to where I am going without paying attention to what I experience along the way," "I find myself listening to someone with one ear, doing something else at the same time," and "I forget a person's name almost as soon as I've been told it for the first time." Then the investigators recorded the clinicians' interactions with more than 400 patients and interviewed the patients to gauge their level of satisfaction.
After analyzing the audio recordings and the patients' responses, the researchers found that patients were more satisfied and more open with the more mindful clinicians. They also discovered that more mindful clinicians tended to be more upbeat during patient interactions, more focused on the conversation and more likely to make attempts to strengthen the relationship or ferret out details of the patient's feelings.
The less mindful clinicians, on the other hand, more frequently missed opportunities to be empathic and, in the most extreme cases, failed to pay attention at all, responding, for example, to a patient's description of waking up in the middle of the night crying in pain with a question about a flu shot.
Significantly, the most mindful doctors remained efficient. They accomplished just as much medically for their patients as their least mindful colleagues, despite all the extra conversation with patients about experiences and relationships.
"We clinicians are not always fully present for patients because our minds are always working," said Dr. Mary Catherine Beach, lead author of the study and an associate professor of medicine at Johns Hopkins University. "But when we don't listen," failing to let patients say what they need to say or ask what they need to ask, "we end up giving explanations that are too long and complicated and responses that they don't need or want."
For many doctors, it's not the lack of interest that prevents them from incorporating mindfulness into their clinical practices; it's the time required to complete a standard training course. The courses require a significant commitment, ranging from a full week, to a full day once a week for eight weeks.
In the second study, another group of investigators looked at the effects on 30 physicians of a mindfulness course that required only one weekend and two follow-up evening sessions a couple of weeks apart. Even after such an abbreviated course, the researchers found decreased levels of burnout, anxiety, depression and distress among the doctors. And nearly a year later, those salutary effects persisted, even without any mindfulness training "booster" sessions.
"We tried to get the training down to the bare minimum and as user-friendly as possible," said Dr. Luke Fortney, lead author of the study and an integrative and family medicine physician who is part of the Meriter Medical Group at the McKee Clinic in Madison, Wis. "We didn't want to exhaust the doctors with another burden."
Dr. Fortney and his colleagues filled the condensed course with techniques adapted for busy clinicians, like the "two feet one breath" technique in which a doctor, just before entering an exam room, stands in front of the door and concentrates on breathing and the feeling of his or her feet on the ground as a way to help focus on the moment. They also created a practical and accessible Web site that reinforces key points and offers helpful advice in the form of short videos, brief audio recordings and easy-to-digest tables.