Dr. Toby Bressler Discusses the Challenges of Providing Care at EOL

We spoke with Toby Bressler, PhD, RN, OCN, FAAN, Senior Director of Nursing for Oncology and Clinical Quality, Associate Professor Medical Oncology, Icahn School of Medicine at Mount Sinai, about her article ““Unaware and unprepared”: experiences of critical care nurses providing end-of-life care; a qualitative study”, which was recently published in the Journal of Hospice & Pailliative Nursing.

 

What were the 5 categories identified in your study?

So this is a qualitative study where we researched about 215 critical care nurses across the country, and this is their stories. And the five overarching themes that we recognized in this study were, the first was, we can’t fix everyone. And this theme really described the frustration of the critical care nurse not being able to “save” their patient, the nurse’s perception of doing everything to fix their patient. They were very frustrated by their inability to heal and restore the patient to health.

There’s a phenomenon described in the literature, it’s called depth of field to similarity, and it’s similar to photography and the lens one uses to capture an image, so if you’re using a panoramic or a portrait or a zoom lens. So this perspective of the nurse patient relationship really depends on the lens that one uses. So the nurse with more experience or exposure to end of life had a different type of lens, and they were being able to see the difference that they made in their patient and their family as opposed to maybe an early career nurse, newer to practice that had a different kind of lens and did not see the act of presence as being healing.

The second theme that we saw was task-oriented nursing, and this theme really described the increased workload that was associated with the nurses caring for patients at the end of life. They described being stretched thin, not having time to complete their assignments, and thereby missing nursing care. And were focused mostly on the task at hand instead of the comprehensive end-of-life care delivery that one may be able to do with more time.

The next theme we discovered was the theme of a profession of broken individuals. This was really heavy to hear from the nurses as they shared their experience of wanting to fulfill their nursing duty, but felt unable to do so. This conflict of caring for patients at the end of life left nurses feeling hopeless and distressed, and many times their response to morally challenging situations, it negatively impacted their emotional health and they felt physical and emotional symptoms such as physical and mental exhaustion.

In addition to that theme, we actually learned more in reading our patients’ stories, was that there is a pervasive culture in critical care of avoiding the conversation of end of life, and that seemed to frustrate the nurses who participated in our study, that they didn’t feel empowered to break this unwritten rule.

Another one of our themes was the nurses feeling unaware and unprepared, and the nurses shared that their lack of knowledge and skill in delivering end-of-life care in a critical care setting, they spoke about how their limited understanding, education and training was a gap in their care delivery. Conversely, the nurses who reported having end-of-life training such as ELNEC which we’ll talk about later, described having a higher level of confidence and skill in delivering that end-of-life care.

The last theme that was illuminated in the study was a hand to hold. The participants in our study described the non-quantifiable elements of nursing care. They talked about the shared perspective of advocacy, communication and providing emotional support to their patients and their families, were essential to their role. They described their focus on retaining the dignity of their patients and providing comfort and being the support system for their patients and their families. And the nurses express their feelings of fulfillment, satisfaction, humility, as being able to serve in this capacity in that role.

Where can nurses go to receive ELNEC-Critical Care nursing education? Should administration be seeking the same training?

That’s a really good question. So let me answer the first part. Dr. Betty Ferell in her seminal work, describes the lack of education in providing end-of-life care, and that was the genesis of ELNEC, which is the End-of-Life Nursing Education Consortium. And Betty Ferrell and others describe the essential need to integrate ELNEC critical care nursing education training in the critical care setting. The AACN, the American Association of Colleges of Nursing list on their website, all of the ELNEC training courses and trainers available across the country and around the globe. There are ELNEC trainings from a variety of healthcare delivery settings, from geriatric to pediatric, for new graduate nurses to advanced practice nurses. So there’s something for everyone in ELNEC and an easy way to find out more information is emailing ELNEC at elnec@coh.org.

To answer the second part of your question, as lifelong learners, all nurses and truly administrators as well, should seek some end-of-life training if they have critical care under their portfolio. It gives one a better understanding and vantage point of what it is that’s being delivered at that point of care.

What types of institutional constraints prevent nurses from acting, and can anything be done to change it?

I would say that delays in palliative care conversations and not including nurses in those conversations, can prevent nurses from acting upon what they know to be true, which is taking good care of patients at the end of life in a critical care setting. I would also add that a healthy work environment with a true partnership of the interdisciplinary team in conjunction with adequate staffing contributes to a better work environment for our critical care nurses and for any nurses for that matter. These workforce issues need to address early recognition and intervention for nurses who are exhibiting compassion fatigue. And interventions can include holistic measures and social support. I think most importantly, using evidence-based research, education and administrative support, nurses will feel better prepared and better supported to do this important work of caring for patients at the end of life.

In some ways, nurses appear to be at odds with administration. They describe administration as “numbers” oriented, whereas nurses are quality of care oriented. Can this be rectified?

In many ways, nurses appear at odds with administration. I would say our heavy lifting is nurses at the point of care, partnering with nurse administrators to clarify the misconception that providing end-of-life care is a lower level of acuity, whereas actually in reality, families and loved ones and patients themselves who are at the end of life, need a great deal of support, presence, reassurance. And patients oftentimes require more frequent monitoring to identify the subtle signs of symptoms of pain and anxiety that are often experienced at the end of life. I would also add that the emotional work of supporting family members through this time cannot be underestimated. The staff who are present with these families at the end of life, they also need time and space to express themselves and process what they’re bearing witness to.

How can nurses talk with their intensive care physicians about the importance of EOL conversations being initiated by the physician, not the nursing staff?

Again, that goes back to our healthy work environment. When one has a true partnership and interdisciplinary team, it’s a level playing field that anybody can approach the team and have that conversation and unpack this. I would say that ELNEC gives a nurse really good tools to have that crucial conversation with their interdisciplinary team, to formally meet with families and talk about what it is that they’re going to provide at the end of life. That if taking away the words, we’re withdrawing care, we’re withholding care, and exchanging them too, we’re providing comfort measures or we’re providing supportive care, is a way to change that paradigm and that conversation.

What message can you deliver to ICU nurses regarding the challenges they face?

You’re not alone. There are other nurses who are experiencing exactly what you are experiencing at the moment, and we’re in this together.