September 10, 2015
America’s doctors see themselves as the vanguard of medical progress, where death stands in the way of what science can do. Now the healthcare community is starting to acknowledge the importance of end-of-life planning and care.
By Katja Ridderbusch, Atlanta
Ariella Dagi scans her brain for words that match what she wants to say; words which don’t sound used or worn. She starts to speak several times, stops and starts over again. With delicate hands, she paints a small circle in the air. “What really stuck out was the silence,” she finally says. “The patient doesn’t say anything, and the doctor doesn’t say anything.” The doctor, she continues, lets the patient have space, until the patient is ready. “At first, it was almost uncomfortable for those sitting around to resist the urge to talk our way through that silence.”
In her white, waist-length coat, Dagi sits on the outmost corner of a beige leather couch in the waiting area which, with high ceilings, brightly painted walls, and lush palm trees looks more like a 1920s seaside resort than a modern-day hospital.
Dagi, 27, is a third-year medical student at Emory University in Atlanta, Georgia; a young woman with porcelain skin and a calm face. Her thick brown hair is loosely tied together. It’s late afternoon and she is taking a short break from her shift on the hospital ward.
A few weeks ago, Dagi took a palliative care class, which teaches how to relieve suffering and improve quality of life for people with serious, often terminal illnesses. Following the class she shadowed an attending physician who, at a patient’s bedside conducted a conversation doctors dread, a conversation about the end of life.
“Even though physicians and people in the medical field are dealing with death, or potentially death-involving situations all the time, we don’t really talk about it,” says Dagi. “We don’t talk about it very much with each other, and we don’t talk about it with the patients.” It is as if there is a block in doctors’ minds, she says. “Death, it seems, is a taboo.”
That may be because it stands against everything modern medicine is about, especially in America, where striving for progress and overcoming even the highest hurdles is rooted more deeply than anywhere else. Or it could be because it’s counter-intuitive to Western medicine’s mission, which is to heal, to save lives, with whatever means research has made available and sometimes, with breathless activism.
This attitude could change soon. There’s a paradigm shift taking hold in the United States, as the process of dying is gently pushed out of its niche existence in hospice home care and palliative wards into everyday clinical practice, and into the broader public arena. Doctors have begun, albeit reluctantly, to integrate the old-fashioned Ars Moriendi, the art of dying, into their work.
The new trend has many faces. There’s the interdisciplinary “Death in America Project”, funded by philanthropist and investor George Soros. There’s the bestselling book by Harvard physician Atul Gawande, “Being Mortal”. There’s a series of articles in The New York Times, published under the title: “The End”.
Also, more and more medical schools in the U.S. are considering making classes on palliative care mandatory. Some medical schools, like Emory in Atlanta, made this move years ago. Harvard Medical School and MIT offer a class about the limits of medicine as part of their joint “Health Sciences and Technology” program. The class has recently seen a surge in student attendance.
Politics are not far behind. Starting in January, Medicare will reimburse primary care physicians for thorough end-of-life counseling with their elderly patients. The conversations can deal with questions about quality versus duration of life, palliative versus heroic treatments, or they can educate about life on ventilators and with feeding tubes. The discussions should help patients decide about their end-of-life wishes, wishes that more and more people put down in a living will, or with a power of attorney.
Reimbursement for end-of-life conversations were originally supposed to be part of the Affordable Care Act in 2008, but the plan was opposed by Republicans, who heavily lobbied against what they called “government funded death panels”, and a culture that would pressure old people into seeking aid of dying, even euthanasia.
“It was such a distorted discussion,” says Dr. Juliet Mavromatis, an internist and primary care physician practicing in Atlanta. “I find these conversations to be very important. They help the patient really become clear about, ‘How do I want to live in the end?’, ‘How do I want to die?’”
Just like Mavromatis, many physicians in the U.S., who consider end-of-life-conversations useful, point out they’re not advocating for aid in dying, which is currently legal in only five U.S. states.
Mavromatis, 46, tall, slim, with dark features and a soothing voice, sits in her North Atlanta office, her desk picked up neatly after a day of clinic. In front of a large window the branches of a giant oak tree gently bend in the thick afternoon air.
“There are more and more older people who have very definite ideas about what they want and what they don’t want,” notes Mavromatis. One of her longtime patients was an 80-year old woman who, after a stroke, was trapped in a wheelchair. She was obese, suffered from COPD and arthritis. “She was very adamant to me that she was ready to die,” the physician says. “She didn’t want to be hospitalized. She wanted to be treated still, but not aggressively.” Mavromatis prescribed some pain medication, nothing else. “The patient ended up dying at home, just the way she had wanted it.”
However, the majority of her patients want to live as long as possible, Mavromatis says. “People expect, nowadays, to live to be 90, and to be in fairly good health.” If a doctor told someone in their 70s they would need bypass surgery, “most people probably wouldn’t hesitate.”
Mavromatis says the conversation becomes difficult when a physician has to explain to a patient that a specific, often aggressive treatment – be it surgery, chemotherapy, or radiation – doesn’t offer a lot of benefits or improve the patient’s quality of life, “sometimes even the opposite.” After a pause, she adds that dealing with the family is often more difficult than talking to the patients.
There’s, for example, the long-lost sister with a guilt complex who doesn’t know the patient but, being next to kin, is entitled to take decisions. Or, there are five children with five different opinions on where and how their mother, or father, should spend their final moments of life.
“All that can create a very unpleasant atmosphere,” says Mavromatis. That’s why she thinks it’s so critical to discuss end-of-life care and have the wishes documented, while patients are still in full possession of their physical and mental abilities; to get it done before a crisis happens. “The emergency room is the worst place for an end-of-life conversation.”
Ariella Dagi comes from a family of physicians. Her grandmother was a pediatrician; her mother is a pediatric ophthalmologist; her father trained to be a neurosurgeon; her sister and her bother-in-law are doctors as well. Even though doctors don’t like talking about death and dying as part of their daily work, most of them have a very distinct idea about how they want to die themselves. A Stanford University study shows that 90 percent of physicians would forego resuscitation and aggressive treatment if diagnosed with a terminal illness.
Still, Dagi says, “if it were my parent of grandparent, I don’t know how I would decide.” She could imagine saying, “even if they were ready to pass away, I would be willing to do anything to keep them alive, even if that means two extra weeks.” She raises her hands up in the air. “Who knows what those two weeks could mean.”
Aaron Fishman has experienced first-hand that sometimes even the most loving family members can stand in the way of a dying’s wishes. Fishman is 84, skinny, with chiseled cheekbones and a probing look in his eyes. Fishman is not his real name; he says that personally, he doesn’t care if his story is known, but his kids do. For his kids’ sake, he will most likely undergo another surgery, even though the tumor that’s growing behind his right eye has returned twice already and can’t be removed entirely.
The treatment could give him a few extra months, he notes, maybe a year, hopefully in clear conscience and without too much pain. “I’m ready to die,” he says, wearily shrugging his shoulders. “But my children are not ready to let me go.”
His doctor, a neurosurgeon in his early 40s, showed him statistics, explained the chances and risks of the surgery and also the possible side effects that the subsequent drug regimen could have on the weakened body of the 84-year old. But he also told him about patients he had who tolerated the treatment well and were able to enjoy a few extra months of quality lifetime. Fishman adds he trusts his doctor. “He’s a very talented surgeon and a recognized specialist in his field.” But when the young doctor had shared all his knowledge with his elderly patient, says Fishman with a sad smile, he just looked at him with large eyes, because he didn’t have a language for the diagnosis of impending death.
Juliet Mavromatis, too, had to find a language – not from the books, but from her daily work as an internist. When she went to medical school in the 1990s, there were no classes offered that taught students how to deal with the limitations of their field, and how to communication them.
“I probably learned from observing,” Mavromatis says, “from my seniors, who were talking with dying patients at their bedside.” She says she found it hard when she had to do it by herself for the first time. “But once you have helped a person die in a manner that maintains dignity and is peaceful for the family, you get a strong sense of reward, and that makes it a little easier down the road.”
It’s impossible to study end-of-life conversations just in theory, says Dr. Kari Esbensen, a palliative care physician at Emory University Hospital in Atlanta. Unlike other medical schools, Emory doesn’t use actors and role-plays to stage end-of-life conversations. “Because a lot of time it’s forced and artificial,” she says adding that often, students don’t take it seriously.
“At many teaching hospitals, there’s a bias against having students follow dying patients,” Esbensen says, adding that she’s trying to change this mindset. That’s why she takes her students, after a classroom session about end-of-life communication skills, and only in small groups, to the bedside of terminally ill patients. “For all of us, there’s much to be learned from the dying,” she says.
Ariella Dagi doesn’t know yet which medical specialty she wants to pursue. Palliative care certainly is an option, she says. “I find this field extremely interesting because of the high level of communication.”
Physicians, she adds, tend to speak in a scripted manner. “I don’t believe this is on purpose, but many conversations effectively become scripted, because we use the same jargon and we are taught similar ways to express ourselves.”
However, scripted speech doesn’t work in end-of-life conversations, Dagi says. Talking with patients about the limitations of medicine and the art of dying forces doctors out of their comfort zone, their safe and familiar territory. The language and sensitivity needed in those conversations “are nothing that can be readily given over in a power point lecture,” she says.
The gentle buzzing sound of her cellphone reminds Ariella Dagi that her break is over, and she must go back to the ward. Maybe, she says as she gets up, tilting her head slightly to the side, she feels so drawn to the field of palliative care, the medicine of last things, because it involves a real, an old fashioned conversation between doctor and patient. And because “it deals with problems that we can’t quantify well, that we don’t have a solution for, for which there is no cure-all.”
###
Sidebar: Palliative Care - Mandatory for German Medical Students
Since July 2009, according to revised provisions under the Medical Licensure Act in Germany, all medical students need credits in palliative medicine in order to graduate. However, individual medical schools decide how they train their students to deal with seriously ill and dying patients. Some offer a lecture series, some combine classroom courses with visits to the teaching hospital’s palliative care ward, some require students to intern at a hospice facility.
At the University of Münster in northwestern Germany, which has one of the country’s most renowned medical schools, students are required to do a one-week intensive course in palliative care, with classroom, as well as hands-on elements. The practical part takes place at the university’s fully equipped model hospital, where students train in real-life scenarios with professional actors posing as patients, family members, and colleagues.
“It’s ethically difficult and rather inappropriate to send 150 students per semester to the bedside of dying patients, simply for training purposes,” says Dr. Bernhard Marschall, Dean of the Medical School at the University of Münster.
However, Marschall concedes that it’s impossible to learn about palliative care simply from the books, or an academic lecture. That’s why it’s so important to make the simulation as elaborate and realistic as possible. “We want this to be a fully involved experience for the students, just like the real thing, ” Marschall says. rid
This is the translation of an article published in the German weekly national DIE ZEIT / Christ & Welt - 37/2015
© Katja Ridderbusch - DIE ZEIT / Christ & Welt