Photo: Beth Harris, a master instructor in the College of Nursing and Allied Health Professions, has been teaching a Palliative and End-of-Life Care course for 11 years (University of Louisiana at Lafayette/Doug Dugas).
Emily Benedict, a University of Louisiana at Lafayette nursing student, was at the bedside of her dying 103-year-old grandmother.
Just days before, Emily had completed a course that teaches how to care for patients who are nearing the end of their lives or living with chronic illnesses.
Based on what she had learned, Emily knew her grandmother didn’t have long to live. She also sensed that her grandmother was worried about what would happen to her daughter – Emily’s aunt – who had been her primary caregiver.
“... I promised to take care of her daughter as well as our entire family and that she would be okay,” Emily recounted in an essay included in a recent newsletter published by the End-of-Life Nursing Education Consortium.
Mary Benedict, left, is shown with her granddaughter, Emily Benedict, in 2015 (Courtesy of Emily Benedict).
When Emily arrived at the hospital the next day to visit her grandmother, she found a member of a hospice team asking her aunt to consider withdrawing medicine that probably was keeping the elderly woman alive. Her aunt was visibly upset and “refused because she did not want my grandmother to pass,” she said.
Emily again relied on what she had learned in the Palliative and End-of-Life Care course. She explained to her aunt that “the medication may have been prolonging the dying process and not necessarily providing comfort.”
After their conversation, Emily’s aunt decided that the medicine should be discontinued.
“My grandmother passed within 30 minutes of stopping the medication, peacefully and in no pain,” Emily wrote.
UL Lafayette’s College of Nursing and Allied Health Professions has been teaching its students about end-of-life care since the late 1990s. By 2004, it was one of the first nursing colleges in the nation to use course content developed by the End-of-Life Nursing Education Consortium. ELNEC’s curriculum is the only one endorsed by the American Association of Colleges of Nursing.
In recognition of the college’s history of incorporating that content into its students’ training, ELNEC recently designated UL Lafayette as a member of its Hall of Fame. The University’s nursing program is one of 100 nursing programs nationwide – and the only one in Louisiana – to achieve that designation.
Beth Harris, a master instructor in UL Lafayette’s College of Nursing, has taught its Palliative and End-of-Life Care course for 11 years. She is a disciple of ELNEC’s method, in part, because the consortium requires nurse educators to use the latest research-based material.
“I don’t use a text for the classroom because ELNEC gives you the most up-to-date information and has required readings,” Harris said. The College of Nursing and Allied Health Professions’ elective course is a hybrid that alternates traditional classes on campus and online sessions.
Harris is quick to point out that palliative care is not synonymous with hospice care for terminally ill patients. Palliative care is “for anyone with a life-threatening or chronic illness. You anticipate, prevent and treat suffering. It promotes quality of care, holistic care, treating the spiritual, the psychological, the social and the physiological needs of the patient. You treat the whole patient,” she said.
So, nurses may introduce palliative care when a patient learns that he has a chronic, life-limiting condition or begins an intensive treatment regimen, such as chemotherapy.
“A palliative care nurse may come in and just talk to that patient when he’s not in crisis,” Harris said. That conversation may cover advance directives, such as living wills that express what kind of health care patients want if they are unable to communicate.
Hospice care is a type of palliative care. In the United States, hospice care is typically offered when two physicians believe a patient has six months or less to live if an illness runs its normal course. That six-month benchmark is based on coverage by Medicare, federal health insurance.
Harris noted that end-of-life care isn’t restricted to a patient. “It’s the patient and the family, a unit of care. The ‘family’ may not be a family member. It may be the caretaker or someone who is very close to the patient and the family.”
Hospice care is a component of clinical training that UL Lafayette nursing students are required to complete in the first semester of their junior year.
When Harris and Dr. Melinda Oberleitner, dean of UL Lafayette’s College of Nursing and Allied Health Professions, attended nursing school and started their careers, end-of-life care courses weren’t offered.
Nurses and physicians were taught to save lives, to extend lives and to help patients feel better, Oberleitner said. “You didn’t talk about dying.”
With advances in technology and the advent of procedures such as CPR, medical personnel were able to extend the lives of more patients. That ability came with some ethical considerations.
With CPR, for example, physicians and nurses could revive a person whose heart had stopped beating. So, medical personnel were legally required to try to resuscitate patients who no longer had heart rhythms.
Oberleitner, who is a pioneer and award-winning oncology nurse, said such efforts were not always merciful. “That was fine if it was a heart attack, but if patients were dying of terminal cancer, why were we bringing them back? What was the cost, in terms of quality of life, to the patient?” she asked.
A national debate about end-of-life care ensued. It was fueled by high-profile “right-to-die” cases that challenged who has the right to withdraw a patient’s life support. That discourse led to the proliferation of advanced directives, legal documents that convey patients’ wishes for medical care if they have irreversible conditions and are too ill to communicate. Medical professionals were no longer legally bound to try to resuscitate all patients whose hearts stopped beating.
Advancements in oncology prompted a shift toward chronic care and, in some cases, palliative care. A cancer diagnosis was not necessarily a death sentence anymore. As cancer patients began to live longer, treatment began to focus not on just combating the disease, but on improving quality of life.
Over the years, ELNEC’s curriculum has expanded to include the introduction of palliative care at a much earlier stage in an illness.
Harris said this approach introduces palliative care upon diagnosis of life-limiting or life-threatening illnesses and active treatment. “A palliative care nurse may come in and talk to that patient when they’re not in crisis. That nurse may ask, ‘Have you ever thought about advance care planning, about having a living will?’”
Communication with patients who are grappling with long-term, non-curative illnesses or imminent end-of-life issues is key.
Oberleitner said the Palliative and End-of-Life Care course teaches nursing students how to have conversations with those patients.
“It’s called a crucial conversation to have at the end of life or with a patient who is experiencing a life-threatening illness. That’s something that you need to be educated about how to do. It’s a skill,” she said.
Harris noted that a large component of end-of-life and palliative care is simply listening. “A lot of it is saying nothing, doing nothing, but just being present.”
That’s a lesson that nursing student Abigail Gilbert took to heart. Like fellow nursing student Emily Benedict, she contributed an essay that appeared in the ELNEC newsletter.
Abigail described an encounter with a distraught family during her clinical rotation at a local hospital while she was enrolled in the Palliative and End-of-Life Care course.
She entered the room of a patient to take his morning vital signs. She was aware that he had experienced cardiopulmonary arrest the previous night.
Family members had gathered to be with him.
“As soon as I walked in I could feel the tension. I felt unwanted at first and I could just feel the heartbreak within the room,” Abigail wrote. Family members asked her to skip checking his vital signs so he could rest. She complied but instead of leaving, initiated a conversation with them.
“I could tell they were just hurting and looking for a sense of the situation so I did what I knew how to do. I listened! I was present with them and just talked with them. I let them cry and I let them talk. I was able to develop a trusting relationship with them and the patient, who had just received the worst prognosis. They were unsure if he would make another week or even another night under his condition. By the end of the morning, the family asked if I would pray with them for him.”
Abigail said that being able to provide comfort in that situation was a highlight of her student nursing experiences so far.
“I would have never been able to have this opportunity if I had not learned during the course how to care for and be with a dying patient.”
This article first appeared in the Fall 2019 issue of La Louisiane, The Magazine of the University of Louisiana at Lafayette.