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Special Report: When the ED's Job Isn't Saving a Life but Helping One End with Dignity

Scheck, Anne

doi: 10.1097/01.EEM.0000415448.57392.d1

    Though some physicians are influenced by a great mentor, generally they choose a medical specialty by considering three factors: intellectual interest, practice autonomy, and workload demand. Next to none identifies a moment at the bedside or a particular patient encounter as a reason for specialty selection.

    Except in palliative care.

    That was how Robert Zalenski, MD, a professor of emergency medicine at Wayne State University in Detroit, decided his life's work. He lost his daughter, a toddler who had a congenital heart condition. He was ordered to exit the room where she was gasping for breath, but he found a way to watch the monitor from the nurses' station, looking on as the spikes of her heartbeats eventually changed into the flatline of asystole.

    Two decades later, he is still working to ensure that family members are routinely included in similar situations, and more importantly, to institute palliative care programs at all 28 hospitals in the Vanguard Health Systems as its first medical director of palliative care development.

    Years after several investigations revealed glaring and serious shortcomings in the care of seriously ill hospitalized patients, the result of cumulative research from the multicenter Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT), more emergency physicians than ever before are deciding to subspecialize in palliative care. They see what SUPPORT showed in up close and personal ways.

    Dr. Zalenski cited one ED case of a man with metastatic cancer who was short of breath and in pain, but who had not been given an opioid to help him through the night. “You can really help people like these by giving them morphine,” he said, observing that more than a century ago medical pioneer William Osler said pretty much the same thing. Concerns about dependency in these patients are all but moot at such a point. Still, old habits of thinking die hard, he said.

    Several years after his daughter's death, Dr. Zalenski's father died from lung cancer. “These experiences had opened my eyes to the fact that we could find better ways to help people who were dying and their family members,” he said. That served to solidify his determination to foster strong connections among emergency care and hospice providers. In fact, that is a goal at all Vanguard's hospital EDs. “Some patients actually come to the ED and ask for hospice care, a sign of the empowerment of the baby boomer generation,” he noted.

    He and colleagues at Vanguard have formulated a “palliative care index,” which serves as a metric to help with periodic assessment, to gauge how such facilities are progressing, he added.

    And, just as the SUPPORT studies showed, good communication has proven to be an essential method for improving outcomes in such patients. Measures of palliative-care practice can make the difference in how often that successfully occurs. (JAMA 1995;274[20]:1591.)

    Dr. Zalenski is just one of an estimated four dozen emergency physicians who have made the switch to “PC,” as palliative care is often called, and their ranks are growing. (Ann Emerg Med 2009;54[1]:94.) Thirty-four board certified emergency physicians have attained subspecialty certification in hospice and palliative care medicine, and that number is expected to grow. Only 11 emergency physicians were certified when the exam was first offered in 2008, but that figure nearly doubled by the time it was given again in 2010, according to Richard Nelson, MD, the president of the American Board of Emergency Medicine.

    And this past November, the IPAL-EM Project was born, so named for its mission of improving palliative care in emergency medicine. The online resource shares the expertise, evidence, and tools to assist in integrating palliative care and emergency medicine. (See FastLinks.)

    “Incredible gains” have taken place in palliative care education in the past few years, noted Tammie Quest, MD, a director of the IPAL-EM project and an associate professor of emergency medicine at Emory University School of Medicine in Atlanta. “It has been a real sea change,” she said.

    IPAL was originally initiated for ICU personnel, but emergency medicine was added because “the emergency room is where so many care decisions are made” for seriously ill patients, said David E. Weissman, MD, who started the IPAL project with private donations, notably from the Olive Branch Foundation.

    Dr. Weissman, the founder of the Palliative Care Center at the Medical College of Wisconsin, kept “crossing paths” with Dr. Quest, who joined him in the IPAL effort. Ten years ago, no such thing existed in emergency care, but now it is becoming more routine, said Dr. Quest, a developer of the program “Education in Palliative and End of Life Care-Emergency Medicine,” a 14-module course for ED palliative care training that was funded a few years ago by the National Cancer Institute. (See FastLinks.)

    Dr. Quest said she became interested in the field during residency after she first pronounced a patient. “No one accompanied me to the family. I received brief instruction on how to talk with them and left on my own to do so, with no real-time guidance,” she recalled. Training in ultrasound and intubation, however, were afforded multiple training days. “What I grew to perceive is that this was a system-wide issue,” she said. “And it struck me as quite odd there just was no training for this.”

    So Dr. Quest determined that improving end-of-life care in the ED was the area of medical academia in which she wanted to work. “There were not very many places that wanted to hire somebody with that interest,” she said. In fact, even mentioning that she wanted to do research in palliative care elicited confused or skeptical looks; after all, wasn't that better suited for those who work in an ICU, hospice, or a retirement facilities?

    Arthur Kellermann, MD, the chief of Emory's emergency medicine at the time, took a different view, however. “He didn't see it the same way, for which I am very grateful,” she said.

    Palliative care ensures that families have the option of being at the bedside during the final hours of a patient's life, even in the ED, Dr. Zalenski pointed out. A study of 65 family members of cardiac arrest patients, most of whom were spouses, revealed that presence during death helped with the grieving process, although no differences were found in bereavement-related depression and anxiety scores between those who had and had not witnessed the death, said Dr. Zalenski, an author of the study. (J Palliative Med 2011;14[6]:715.) “What we do know is that it took the mystery out of it,” providing a sense of reassurance, he said.

    Palliative care also involves a shift in heath care focus, from “curing to caring,” explained Mark Rosenberg, DO, the chair of geriatric emergency medicine and palliative medicine for St. Joseph's Healthcare System in Paterson, NJ. He recalled a 56-year-old man with terminal lung cancer who was suffering from depression and, at night, shortness of breath. Medication helped both, but so did goal-setting. “He knew he was going to die, even though no one really had said that to him,” he said. “So we had a family meeting at the bedside. We hooked him up with hospice. And we gave him a tape recorder so he could say some things that he wanted his grandchildren to know.” Surrounded by family, “he died at home about two weeks later.”

    Two years ago, St. Joseph's started the Life Sustaining Management and Alternatives program with Dr. Rosenberg in charge. Another doctor and a nurse round out the team, which provides consultation to patients in the emergency department 24 hours a day, seven days a week. “Can we get them home? In many cases, yes,” Dr. Rosenberg said. But palliative care is different from hospice care, he stressed.

    A patient receiving palliative care in the ED also may still be receiving therapy that can lead to a cure. Hospice care, on the other hand, is instituted when death is expected in the next six months, and when “death is accepted as part of the disease process,” he said. They share a common focus: symptom management, including emergency treatment for pain and other forms of discomfort, such as breathlessness, constipation, and depression.

    What kind of patient does that include? A 25-year-old with a brain tumor who has break-through seizures and whose goal is to be stabilized and go home. A 56-year-old with late-stage lung cancer who wants help reducing dyspnea to get home. A patient with advanced multiple sclerosis who wants aggressive treatment for symptom management to function at home. The ED is “a perfect place” to discuss goals of care, Dr. Rosenberg said.

    The conversation actually is fairly easy, and the patient usually leads it, he observed. “I just ask, ‘What is going on?’ and ‘What do you want to do now?’” Dr. Rosenberg, a cancer survivor who was diagnosed nine years ago, said he feels an immediate bond with patients in his daily practice, some of whom are battling the same disease he did. “There is a strength that this gives you, the ability to do things you want to do,” and to let life's smaller vexations fall away, he said. “That strength is something very valuable. We owe it to our patients to give them that knowledge and that power. Knowing that you may die can change your life in many positive ways.”

    The goal of his program is simple: identify what patients know or think is their current state of health. The conversation can start with a simple question, such as asking the patient what is going on with his illness, Dr. Rosenberg advised. “Do you think you are getting worse of better?” and “What are your goals of care?”

    A surprising number are ready to make end-of-life decisions. “We are really the first generation who can help determine how we die,” he said, and many terminally ill patients appreciate the opportunity to make that determination. Finding ways to send them home in comfort saves money but also addresses their desires, he reiterated.

    More than 500 patients have been involved in the program since it began, he said, and they now receive referrals from community primary care physicians who need the team's help with symptom management and goals of care. “We see some patients with cancer or organ failure more frequently” than they see their own primary care doctors, he said. Some patients with heart failure or kidney failure are such familiar faces in the ED “that we welcome them by name when they come,” Dr. Rosenberg said.

    “Many people know they are going to die, and among those who do, all of them want to die at home.” He said. “But 70 percent die in health care facilities instead, and every one of them is admitted through the ED.”


    Four Models of ED Palliative Care

    ED programs tend to fall into one of four categories, according to David Weissman, MD, a founder of IPAL-EM.

    • The traditional consulting model, in which expertise in palliative care is sought from those outside the emergency setting.
    • The emerging ED model, in which the ED takes more ownership of palliative care, accessing local resources and participating in training programs.
    • The integrative ED model, in which palliative care becomes a routine aspect of care for ED patients and the ED is engaged in education and quality improvement work to enhance primary palliative care delivery.
    • Speciality-level palliative care in which emergency providers become board certified in the subspecialty of hospice and palliative care as part of a major ED commitment to improve palliative care service delivery.

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