Annual Edelstein Lecture Tackles Tough Questions Around End-of Life
L to r, David Edelstein, MD, Alan Carver, MD, Brandon Oddo, Shelly Rambo, PhD, Beth Rooney Suereth.
Speaking at the 4th Annual Alan and Sybil Edelstein Professionalism and Ethics in Medicine Lecture, Alan Carver, MD’95, chair of the pain and palliative medicine section of the American Academy of Neurology, noted that there has been a noticeable rise in interest in end-of-life studies and care.
Twenty-five years ago, there might be a handful of people attending a talk on end-of-life care, but today, Carver said, audiences number in the hundreds.
“There has been a greater focus than ever before on these issues,” he said.
Nearly 100 people participated in the Nov. 12 Edelstein lecture on “The Ethics of End-of-Life Care,” which was held virtually and considered the impacts on patients, families and medical staff.
Palliative care is never about stopping or withdrawing care. It’s all about living with incurable illness as well as possible. It’s really about life.
Alan Carver, MD’95
“Most people don’t want to talk about it,” said moderator David Edelstein, MD’80. Edelstein, former chief of otolaryngology at Manhattan Eye, Ear and Throat Hospital and a clinical professor at Weill Cornell Medical College, and his sister Marcia Edelstein Herrman, MD’78, founded the lecture series in honor of their parents Alan and Sybil. The lecture focuses on a different topic every year.
Edelstein touched on his own end-of-life experiences with his parents, family members and friends. Autonomy, the patient making his or her own decisions, is a primary principle, he said. But it can get complicated.
“If there’s no advance directive, what do doctors do?” Edelstein asked. “They advocate for the best care available…But that’s not so easy to do sometimes when things are happening quickly with your patient.”
Carver described what he called an ethical imperative; “The right to excellence at the end of life.” Patients, family and physicians often misinterpret a fatal diagnosis and Do Not Resuscitate orders as signaling the end of care.
“Palliative care is never about stopping or withdrawing care. It’s all about living with incurable illness as well as possible,” he said. “It’s really about life.”
Medical students feel unprepared to encounter dying patients.
Brandon Oddo, fourth-year medical student
Fourth-year medical student Brandon Oddo said medical students often don’t get a lot of advice on how to process that fatal diagnosis for patients or for themselves.
“Medical students feel unprepared to encounter dying patients,” said Oddo, who is on a two-year leave from medical school to pursue a master’s degree in theology.
“This gap may be in part due to a hidden curriculum that implies that death is medical failure, but I find that the growing respect for hospice and palliative medicine is challenging that,” said Oddo, a co-founder of GRACE (Grieving, Reflecting, and Cultivating Empathy), a student-led organization that helps students discuss loss and understand grief. Oddo suggested that medical education allow students to experience the chaos that can occur when a life ends.
“I think a humbled, even reverent recognition of the messiness of the end of life is, in its totality, crucial to developing moral character and informing proper responses in this setting.”
Edelstein introduced Shelly Rambo, PhD, a professor at BU’s School of Theology and former interim dean, as the person who teaches chaplains how to help families navigate end-of-life ethics.
“They do so at the edges of their own religious traditions and in institutional spaces that speak a different language, the language of medicine,” said Rambo.
“Research describes how hospitals and hospital staff respond to death by avoiding it, distancing themselves from it, focusing on its technical aspects and managing it,” said Rambo, quoting from “Paging God,” a book by Wendy Cadge, PhD, president and professor of sociology at Bryn Mawr College.
Rambo recalled an interview with a hospital chaplain who was present as a woman went into cardiac arrest. The response of dozens of medical staff trying to save her amid the husband’s grief-stricken screams, was like being caught in a sudden storm. After the woman died, her husband and the staff inside and outside the room were left weeping from the experience.
“The staff must move quickly to the next thing, the chaplain told me, they’re trained to do that. But the chaplain worried about the impact on them. There was always, she told me, something unfinished about these moments, something unprocessed,” said Rambo.
“Most people have not sat down to think about their own wishes for end-of-life care,” said Beth Rooney Suereth, who served as a family caregiving consultant for AARP Public Policy Institute in Washington, D.C., and founded Caregiving Pathways, a family caregiver support organization.
Instead, patients and families are typically surprised when hospitals shift from curative to comfort care. Most are unaware of the benefits of a physician order for life-sustaining treatment (POLST). Signed by a physician, physician assistant or nurse practitioner, this document specifies the treatment the patient desires for medical procedures like resuscitation and other medical interventions, and medically assisted nutrition and hydration.
“It is more specific than any other advance directives,” said Suereth, CAS’85. There’s also the financial consideration of keeping someone alive.
“I see families who have medical bills from end-of-life care, and they’ve seen the suffering that somebody endured for care that wasn’t effective and certainly didn’t provide any additional quality of life,” said Suereth. “The ultimate goal is quality of life at the end of life.”
She urged families to discuss everything ahead of time, including who has a say in making decisions.
“You can plan and prepare or react and regret,” Suereth said.
To watch the lecture please click here.