We’ve made dramatic progress in the integration of palliative care into medical school curricula and the consciousness of the medical world.
—Diane E. Meier, MD, FACP
Although the world is full of suffering, it is full also of the overcoming of it.
—Helen Keller, Optimism, 1903
Shortly past 8:00 AM on July 1977, Diane E. Meier, MD, FACP, began the first day of her medical internship. Within minutes she would experience another first: the death of a patient assigned to her service. Although 36 years have passed, Dr. Meier recalls with clarity the page that sent her running after her resident to the coronary care unit. At the bedside, she watched as her colleagues tried to save an 89-year-old man with end-stage congestive heart failure.
For more than an hour, they used every medical tool and skill at their disposal trying to save their patient’s life. When the cardiology fellow finally called the code, Dr. Meier remembers leaving the old man covered in tubes on the bloodstained bed. His wife was seated outside as she and the other young doctors walked past—Dr. Meier said that the memory of that man’s death is still with her.
Another invisible tool that she carries in her medical armamentarium is the memory of her grandfather, a man of deep and passionate beliefs about fairness and justice in the world. He died alone, without warning. “I never got to say goodbye, to thank him, to tell him how much we loved him,” said Dr. Meier. “His memory helps me remember that every sick person and every old person is a fellow human being who could have been my grandfather,” she added.
Dr. Meier grew up in Chicago in an atmosphere of vivid social activism. Her father’s parents were socialists in the early part of the 20th century. Even after leaving the Socialist Party they remained politically active, helping those most in need.
“During World War II, my grandfather sponsored refugees who were fleeing Europe to escape Hitler. He bent the law to save people. You were supposed to commit $15,000 per refugee so they would not ‘burden our society.’ Of course, that was cost-prohibitive, so he put up the same $15,000 repeatedly to save as many people as possible,” said Dr. Meier.
The relentless nature of activism had a huge effect on the family. “My father’s brother became a historian in African American history, actually founding the field of African American studies. My father became a statistician who later was the driving force behind the development of the randomized controlled trial as a standard of evidence for drugs and devices,” noted Dr. Meier. “He was a major influence on the levels of rigorous evidence ultimately adopted for the FDA approval process.”
Dr. Meier said that social consciousness was simply the air she breathed. “My father would take me along with him as he went door-to-door, campaigning for various political candidates. From a young age we were taught the virtue of critical thinking and never to accept received wisdom at face value,” said Dr. Meier.
She continued, “That was the conversation at the dinner table, and it was troubling when I was a young medical student to find that the critical thinking approach was really not the standard.” She found that the medical establishment in some ways was a tight-knit guild. “People go along to get along, and knocking the established way is sort of frowned upon. I think that is one of the reasons it took so long for fundamental changes in pain management to get the attention they deserve.”
Dr. Meier graduated from Oberlin College in 1973 and received her medical degree from Northwestern Medical School. But medicine wasn’t her first career choice.
“When at Oberlin, I planned on becoming a teacher; in fact, I almost had the credits needed to become certified in secondary education. During my junior year, I worked for a semester teaching children with learning disabilities at an inner-city school in Philadelphia,” said Dr. Meier. During that time, it became painfully obvious to her that spending 6 hours a day with disadvantaged kids would not begin to undo the harms of the social and economic context they lived in for the other 18 hours a day.
“The teachers were powerless to truly make a difference preparing these challenged kids for the future. The external forces were just too great, and I just wasn’t comfortable in a world in which I was powerless. So I decided the best way for me to make a difference was in the field of medicine,” said Dr. Meier.
Although she was not a good fit for the medical school format of memorization over critical thinking, she was eventually able to leverage her medical degree to address one of the most difficult challenges facing the U.S. health-care system—how we care for the sickest and most vulnerable of our patients.
“During my residency program, it was difficult to think about focusing on one organ or one disease without thinking about the person influenced by that disease. It didn’t make sense to write a stack of prescriptions without first knowing if the patient could afford them,” said Dr. Meier.
Like most doctors who pursue careers in the rigorous academic environment, Dr. Meier credits early mentors with shaping her career in palliative care. “As a resident, one of my cardiology attendings, Dr. Jack McAnulty, taught me how to stop and listen carefully to the patient’s heart sounds. He also taught me how to pay attention in general,” said Dr. Meier.
More lessons were learned along the way. For instance, Dr. Meier credits Dr. Christine Cassel, who is the current President and CEO of the National Quality Forum, with teaching her that even the most difficult social problems are resolvable with determination, leadership, and strategy.
Those early lessons about dealing with the unmet palliative needs of old and very sick patients were reinforced during what she calls her “first real job,” at Mount Sinai School of Medicine in New York in 1983. Her Department Chairman, Dr. Robert Butler, had conducted research that exposed the unregulated nursing home industry, and his work with older patients became the underpinnings for many of the person-centered therapies used in palliative care today.
“From Dr. Butler I learned that the academic model (grants, research, and publication) was necessary but far from sufficient to ensure quality care for all Americans. He never pushed me to do anything I didn’t want to do until I told him I was too busy to apply for the new Project on Death in America Faculty Scholar’s Program, a new initiative to support medical leaders in the development of the new field of palliative medicine. He refused to take no for an answer. Because of his mentorship, in midcareer, I found my calling in palliative care medicine,” said Dr. Meier.
Growth of Palliative Care
“The palliative care field has undergone a dramatic growth process. Twelve years ago, there were virtually no supportive palliative care programs in hospitals. Today, basically every hospital in the country has a service,” said Dr. Meier.
However, Dr. Meier noted that the road to acceptance of palliative care as a subspecialty was not always smooth. As a pioneer in the field, she recalls attending a 1995 retreat with her colleagues to begin hammering out a working model for a palliative care program.
“I remember sitting around a big table at the first retreat discussing what had brought us to this work,” she said. “Each person’s story was rooted in family experiences that were transformed into professional mission and commitment.”
In 1997, Dr. Meier and a team of colleagues were finally able to open a palliative care consultation service. “I remember worrying about being able to help the pain patients, as I’d never been taught to manage pain in medical school. I also worried that my medical school colleagues would think that I was doing something “soft” and unimportant,” she commented.
Those feelings of inadequacy were short-lived, as the demand for palliative care services soon exploded. “It was gratifying on many levels. Our existence as a clinical service seemed to be the catalyst for permitting our other colleagues to point to the problems, acknowledge the suffering of their patients and families, and, equally important, recognize the limits of their cure-at-all-costs medical model,” said Dr. Meier.
A Needed Accelerant
Despite the growing recognition that palliative care was an essential component in the full continuum of care, the model suffered growing pains due largely to one factor: money. As with other so-called “cognitive” services, provider reimbursement for palliative care was, and remains, dismally low—too low, in fact, to support the full interdisciplinary team required for high-quality palliative care delivery. It took demonstrating the business case for palliative care before most hospitals began to invest in these services.
“However, we’ve made dramatic progress in the integration of palliative care into medical school curricula and the consciousness of the medical world. Although the quality component of palliative care was established early on, it wasn’t until these programs demonstrated a strong business case that there was a surge of uptake in hospitals across the country,” explained Dr. Meier.
Dr. Meier explained that although hospitals are financially incentivized to offer palliative care services, delivery of palliative care outside of hospitals has been slow to take off, until health-care reform. “But the passage of the Affordable Care Act changed that structure by rewarding quality of care over volume. All of sudden, there are financial incentives for community health systems to safely and effectively manage the sickest and most vulnerable patients where they live, in their homes and communities. Palliative care fits right into that model, for instance, by keeping more patients at home instead of in the hospital, offering much better quality for complex and vulnerable patients, and because it helps such patients prevent symptom crises and emergencies, markedly reducing emergency department and hospital utilization—a huge cost saving.” said Dr. Meier.
An indefatigable thinker and doer, Dr. Meier is currently involved in a 10-year plan to further expand the reach and impact of palliative care services beyond the hospital—to people’s homes, nursing homes, assisted living facilities, doctor’s offices, and cancer centers. “Our plan, which I call ‘Palliative Care Everywhere’ for short, is to take the model we used in hospitals over the past decade and deploy it over every other care setting in the country. We need to analyze, define, and communicate the ability to deliver palliative care models beyond the hospital. We need to do a much better job developing and providing front-line providers with the tools they need so they can develop these programs and ensure their quality,” she said.
How is this undertaking going to cover the country’s vast health-care landscape and empower the multiple levels of providers needed for its success? “We are in the process of developing a massive, open, online interactive course teaching doctors, nurses, social workers, and other professionals the core skills of palliative care medicine,” said Dr. Meier.
Dr. Meier’s tireless and innovative work in the palliative care movement has demonstrated that change is possible, even within the challenges of our broken health-care system. She noted with satisfaction that despite the emotional and physical demands of palliative care medicine, the field is attracting a growing number of young doctors eager to make a difference for our sickest and most vulnerable patients.
Does her impossibly demanding schedule leave time for restorative leisure activities? “I’m an avid reader. I just finished Speak, Memory, the autobiography of Vladimir Nabokov. Now I want to go back and read everything he wrote. And I try to garden, but the deer and rabbits make that a bit difficult,” she said with a laugh. ■