Decisions during end-of-life care continue to gain prominence as advancements in healthcare that have the potential to change the circumstances surrounding death and even prolong life. Assistant Professor of Statistics Stacey Culp, Professor of Psychology Christina Duncan and Associate Professor of English Catherine Gouge came together to discuss a wide range of ethical issues and moral dilemmas facing end-of-life caregiving, from autonomous decision-making and the importance of advanced directives to palliational noncompliance and improving physician-patient communication.
On meeting patients’ end-of-life needs more efficiently
CULP: We’re looking at ways to get patients to complete physicians’ orders for scope of treatment forms as opposed to advanced directives so that their medical wishes are honored at the time of death. West Virginia has the E-Directives Registry through the West Virginia Center for End-of-Life Care. It’s available to practitioners 24-7. If you are admitted somewhere in West Virginia and you have something in the registry, your wishes can be known to whoever is treating you. Only 3 percent of West Virginians who died in the study period, 2011 to 2016, had a form in the registry. Knowing that we can have patients’ wishes met at the end of life more often if they have a medical order filled out rather than an advanced directive is something we’re encouraging more.
Ethics relates to this noncompliance aspect. We’ve taken a look at 143 ethics consults that were done at Ruby Memorial Hospital in 2016. Noncompliance was the reason for the consult 15 percent of the time. We also looked at individuals who had a psychiatric diagnosis that was a strong contributor to the reason for the ethics consult. For those people, about 50 percent of them had noncompliance as a diagnosis. At this stage of noncompliance, they are identifying that there is some moral dilemma in the care. Having that label means things about how people may approach care.
On palliational noncompliance
DUNCAN: It stems a lot on what you were talking about, Stacey — this label. Palliational nonadherence is something where patients make a purposeful decision to not follow some aspect of their care. It might be all of their care. It might be all of their prescribed care or some portion of it. It may be a different schedule or less dosage, but it’s a purposeful decision to not follow a part of the care that has been prescribed to them. It’s different than what we refer to as inadvertent nonadherence, which is just forgetfulness – you ran out the door and you were so busy that you forgot to take your medicine. If we don’t really understand the function or the type of nonadherence that a patient has, then we really can’t modify that behavior.
“Noncompliant” is viewed as a negative term and a negative label that we would assign to patients. Yet, if we really take a patient-centered focus, the patients and the families are the ones that have the lived experience of what it’s like to carry out a regimen. If we really try to put ourselves in their shoes and understand, then we can have a better conceptualization of why they are choosing to make those nonadherence decisions. If it’s not viewed so negatively, maybe at an end-of-life decision it’s someone who says I want to spend the last weeks of my life not doing cares. I want to just be like everyone else. Understanding what it is they are having to do and shaping it or tailoring it so that they are more apt to do at least the most important parts of their treatment plan is important.
On effective communication between doctors and patients
GOUGE: You talked about how important it is to normalize nonadherence when questioning patients about it. That really struck me because it is one of the things I noticed when I started to look into how effective communication is defined, studied and measured. For example, in patient discharge instruction, whether or not a patient adheres or complies with the instructions is used as the measure of whether or not the communication is effective. That has some assumptions built into it that are a bit problematic. The reality is that most people are noncompliant at some point to some extent.
GOUGE: A lot of the communication with patients I’ve studied has done the opposite of normalizing nonadherence. Trust between physicians and patients is such a barrier sometimes to developing a shared understanding of goals.
DUNCAN: It takes away some of that label when you frame it as something we all do. It also increases the integrity of the response you get. It’s an end-of-life issue, too.
CULP: That communication is just so important. Whenever you are in that kind of situation, if you have people who are hospitalized in this case, which is a very stressful time for anybody, and they have some mental health challenges, if you’re not communicating with them, it’s very easy to just label them as noncompliant rather than trying to figure out what’s going on. That requires good communicators who are willing to see the patient from a positive perspective.
GOUGE: It’s important not to see noncompliance as where the problem begins. If you do that, you miss the opportunity to get feedback from a patient about their particular situation and how the medicine makes them feel. I talked to some discharge nurses when I was doing that first study on discharge instructions who said that’s my job to go over those instructions, and I frequently have patients tell me, “I can’t take that because it makes me feel bad.” Or, “I can’t afford all of these, so which one should I buy first?” They frequently find there is no way on the form to indicate they’ve received that response.
On finding common ground
DUNCAN: It’s also assuming that the providers who contributed to the content of those plans actually communicated it with each other as well. Taking a stakeholder approach to doing studies is community-based. It’s really getting the voice of the patients and the families into the research from the very beginning. It’s talking to the patients and the parents and asking what they think about this intervention — what needs to be in this intervention? How should it be scheduled? How should the information be shared? Some of the best information really comes from the boots on the ground experiences of teaching communication and how to open those lines of communication. What do we need to do with providers to help them ask the questions in a way that’s going to get better information or in a way that’s going to enhance the relationship down the road? But also asking the providers what they need, what are they lacking. It’s really a more comprehensive approach. It’s getting patients, providers, families and parents all on the same page and really helping to design the studies. That’s really going to take our directions in a way that makes it more important and more useful.
Stacey Culp is the director of statistical consulting at WVU. She received a PhD in mathematics from the University of Michigan in 2008. Prior to joining the Department of Statistics, she was a research assistant professor and clinical associate professor in the WVU School of Nursing.
Christina Duncan is the area coordinator of child psychology at WVU. She received a PhD in psychology at Louisiana State University in 1995 and is a licensed psychologist in the states of West Virginia and Pennsylvania.
Catherine Gouge is the lead adviser for the medical humanities and health studies minor at WVU and teaches courses in Rhetoric, the Writing of Health and Medicine, Professional Writing and Editing, Multimedia Writing, and Writing Pedagogy. She received a PhD in English from WVU.