When nurses reported less frequent use of palliative care for their patients, they tended to experience higher levels of moral distress, a study finds.
Minimally invasive surgery, telemedicine, electronic medical records. These, and other healthcare innovations, have changed the way patient care has been provided over the past few decades. Yet, even in modern healthcare, care delivery for certain patients can sometimes be lagging.
For example, when researchers analyzed 167 questionnaires completed by critical care nurses in seven critical care units at the University of Virginia Medical Center in Charlottesville, Virginia, they found that less than 40% of the respondents reported being highly competent in any of the palliative care domains such as pain control, symptom management, legal and ethical considerations, cultural humility, and spiritual and psychological approaches to care. They also reported palliative care education to be lacking, with 38% reporting that they had no palliative care training the past two years.
The use or non-use of palliative care obviously affects patients, but lack of its use also affects nurses. During the study period, most respondents reported experiencing moral distress, and "moral distress levels differed significantly on the basis of perceived use of palliative care," the study's authors write. Nurses who perceived less frequent use of palliative care for patients tended to experience higher levels of moral distress.
So, how can nurses' rates of moral distress be decreased and patients' palliative care needs be met?
One of the study's coauthors Ken White, PhD, AGACNP-BC, ACHPN, FACHE, FAAN, University of Virginia Medical Center Professor of Nursing and Associate Dean for Strategic Partnerships & Innovation at the UVA School of Nursing, and palliative care nurse practitioner at UVA Health, recently shared his perspective on palliative care as well as the study's implications with HealthLeaders. This transcript has been lightly edited for brevity and clarity.
HealthLeaders: Since you are a palliative care expert, can you give me a little background on the history and evolution of palliative care?
Ken White: It's a relatively new [specialty]. I'm a big fan of nursing and healthcare history and nurses got [their] start as palliative care providers. By that, I mean there weren't all these treatments available and nursing's original goal was to care for and comfort and provide compassion to people who are suffering.
But gradually, over time, with more technology and more advances and people living longer, there is this sort of erosion of dealing with total suffering, which is much more than physical. In America, we find it so difficult in our culture to talk about death and dying.
There was a grassroots consumer movement, it started in about the '80s, and people began to say, 'We should be able to decide what we want for our lives.' In 1990, the Patient Self-Determination Act was [signed into law]. It says people have a right to refuse treatment, and they should have an advanced directive. It's been slow to be adopted because you know, because the medical establishment and nursing to some degree, hasn't really kept up with the requirements for what it takes to sit down and have a conversation with a patient's family at the time of a diagnosis of a life-limiting disease or condition.
HL: What was the intent of the study?
White: The purpose of this paper was to say there are lots of consequences, not only to the patient and the family of not having those discussions, but also to the care providers, especially nurses.
HL: The study mentions moral distress as a consequence nurses might experience from the lack of palliative care for patients. Can you talk about the specifics of moral distress among nurses?
White: When an individual knows the morally correct action to take but is prevented [from] doing so because of internal or external restraints, that's moral distress. Specific to critical care patients and this study, when a nurse does not believe that delivering treatments will help or decrease suffering, it may lead to moral distress.
I think a lot of people confuse or conflate moral stress or just plain stress. There's going to be stress when you're taking care of patients because they're all different and they all have different situations. But moral distress, and Beth Epstein, [one of the coauthor's of this study], has done research that says that if a nurse faces moral distress and nothing is done about it, it will [eventually] come to an end because the patient will die or be transferred. But, if the nurse doesn't come to some sort of resolution about it, then the next time [a similar situation] happens, it activates what Beth calls "moral residue." It becomes additive [with each patient]. It has to be dealt with or people burn out or they become emotionally numb and don't care anymore or they leave the profession, or they leave the job.
HL: What are the study findings?
White: The results are robust and stable across the [critical care] units that [the respondents] don't get enough [palliative care] education. [They] believe that all the palliative care competencies are important, but they don't rate themselves as competent in those areas. And the nurses that had the least amount of competency in those areas say that their moral distress higher.
HL: Has palliative care education changed over the years?
White: [Many years ago] I started working with Pat Coyne, who is a nationally known pain management specialist nurse. He and I developed a survey that went out to all the members of the oncology nursing society. Our results were from 1999. The paper that was published was called Are Nurses Adequately Prepared for End-of-Life Care?
The conclusion was no. The top thing that they felt like they lacked was communication techniques with people about death and dying. We repeated the study 10 years later with oncology nursing society members. There was no change, but the most appalling thing was the low amount of education that our nurses had had on the topic.
HL: What are some of the barriers nurses face regarding palliative care?
White: They seem to know that all [palliative care] domains are important, but the low amount of palliative care education they receive is a barrier. I would also say that interprofessional education is a barrier. We know from work that has been published that sometimes when nurses get education on palliative care their moral distress goes up rather than down because they know what to do, so they're even more frustrated when they can't get their physician colleagues to do it.
Often the response from the physician is, 'I don't think they're ready for hospice yet.' That's a misunderstanding on the part of other care providers of what palliative is. They equate palliative with end-of-life care when palliative care can be a layer of support and expertise at any time during the trajectory of a life-limiting illness. We use an interdisciplinary approach to decrease suffering, lessen uncomfortable symptoms, and define what is most important in a person’s life and defining goals of care.
HL: What are some ways to address barriers to palliative care?
White: I would say interprofessional collaboration and giving the nurse a voice on the team, so they can say, 'I think it's time to call in palliative care,' or 'I think it's time for us to have a discussion with the patient.' If they get the education, they should be allowed to use it.
I also think nurses need a supportive framework wherever they work. For example, at UVA, we have something called a moral distress consult service. If a nurse feels like they're experiencing distress over a situation, they can call someone who has training 24/7 and be able to work with that person to help them resolve that. This is in addition to an ethics consult service.
Another thing is regular training on resilience. We have retreats for ICU nurses on resilience. We take them out of the workplace to do it. We have regular yoga classes. We have a palliative care champions program so that any nurse who wants to learn more about palliative care can do so. There's a lot of things that management leadership can do.
HL: Can you talk about the importance of interprofessional collaboration in palliative care?
White: [I think issues around] interprofessional collaboration are probably a symptom of a systemic lack of training in team science. I think that points to a missing element. If we look at high-reliability organizations in other industries like the airlines, they devote a much larger percent of their education budget to team science training. With a physician colleague, I've developed a portable training program called advanced disease life support (ADLS), which is modeled on ACLS. It's a primary palliative care program that has to be completed interprofessionally between a physician and nurse. More programs like that need to be developed.
Jennifer Thew, RN, is the senior nursing editor at HealthLeaders.
Lack of palliative care interventions for patients can contribute to moral distress among ICU nurses.
Interprofessional collaboration is key to providing appropriate palliative care.