Registered nurse and academic David Kenneth Wright on relational ethics in healthcare, the pivotal role of nurses, and the importance of trust in end-of-life care
“The therapeutic presence is key to good nursing. ĚýA nurse has to beĚýable to create that safe therapeutic context for patients. It’s not everybody who has the potential to do this work really well. It takes skill.”
By Devon Phillips. David Kenneth Wright’s work and academic life has blended direct-care clinical nursing, research in palliative care and a deep fascination with the ethics of care. David’s interest in palliative care runs deepĚý– he started his career as a palliative care nurse, and his doctoral dissertation was an ethnographic study of hospice care, focusing particularly on end-of-life delirium. David completed his post-doc in biomedical ethics at 91ÉçÇř in 2014 where he collaborated on a study to better understand the ethics of medicalized dying across Canada, including euthanasia and assisted suicide. He now is an assistant professor in the School of Nursing at the University of Ottawa. Aside from multiple academic and research commitments, an important goal for David is finding time to work as a clinical nurse with patients at the end of life. I met with David in his office at the University of Ottawa.
Q: I understand your clinical and research interests have been in palliative care. What drew you to this field?
A: I have always held the end-of-life phase as a time that is extremely important. ĚýIt highlights the pivotal role that nurses play, in care in general, but especially at the end of life where the essence of care is in full focus. At the end of life, technology recedes into the background and what you are left with is your therapeutic relationship with the patient and with the family. ĚýStakes are high in all aspects of healthcare but they are especially high at the end of life because you don’t get a second chance. I also have always been very interested in ethics. I find the ways in which the end-of-life context illuminates the ethical significance of everyday care fascinating.
Q:How did your clinical work sit with what you know academically?Ěý
A: When I started work on the palliative care unit I was also taking a directed studies PhD course. ĚýI had compiled a reading list that was all about palliative care ideology and the good death - all the ideas that drew me into palliative care in the first place.ĚýWhen I started working I noticed that suffering is something that is very real in palliative care. ĚýI had to reconcile the kind of romantic images that a lot of palliative care discourse conveys. You go to public lectures about hospice care and it’s all about how hospices are lovely, inviting places where people’s goals are actualized and you create positive death bed moments that families remember forever. I have come to realize that all of that is true but at the same time, dying is hard, and patients do experience pain and they do suffer and families suffer too. ĚýSo how do we create all of that good amidst this landscape of suffering? This is something I hope I am able to do now and I have colleagues who do this very well, but as a new nurse in palliative care it was quite shocking.
Q: Give me an example of what you mean by shocking.
A: ĚýI remember being a new nurse and going to turn and position a patient in a lot of pain. ĚýJust moving him was extremely difficult and he was clearly very uncomfortable and he was screaming, “Just let me die, let me die”. ĚýI remember admitting a very young woman and I asked her what her goals were, because we are taught to figure out what the patient’s goals are so we can deliver patent-focused care, and she said, “My goal is chemo, I want to live.” Well, she died 48 hours later. ĚýI don’t think those situations are shocking in and of themselves, but they are shocking to a new nurse whose sensibilities are still developing. We have to learnto work within situations such as these and still contribute to a care process that is meaningful and makes a difference.
Q: You talked about the role of nursing and its importance throughout the whole care process. Can you speak to this?
A: ĚýI think nursing is about relationships. Nurses, unlike any other member of the healthcare team, live time very differently.ĚýSocial workers, art therapists, psychologists, physicians, music therapists- all of these people makeĚývery important contributions to patients, but unlike nurses they schedule when they will see the patient. ĚýĚýYour nurse is the one who responds as your needs change, 24 hours a day, and this lends itself to a specific type of relationship where trust is extremely important.Ěý
Q: How do nurses create an environment of trust? Is this something that can be taught?
A:ĚýAs an educator, I teach about trust from a language of ethics. You can think of ethics as about capital “E” big ticket issues such as removing patients from life support, euthanasia, or delivering doses of morphine that might result in hastened death. These are ethical issues that require moral analysis.ĚýBut even when we are not talking about these big ethical issues, if the patient is scared because they feelĚýlike they will be dying soon, that in and of itself is an ethically relevant moment also. There is something important at stake for the patient and the values that they deem important. ĚýNurses are always participating in interactions that are morally significant for the other person so they must pay attention to relational dimensions and competencies like trust, dignity, and how to convey empathy.ĚýNurses become major players in the stories that family members will tell and retell over the years, even for family members who only knew the nurse for one interaction. We never forget our interaction with healthcare providers and what they meant for us.
Q:You mentioned a focus on relational ethics. Can you explain this and how it applies to palliative care?
A: Relationships between patients and their nurses or between patients’ family members and their nurses are the location where we enact ethical healthcare. This means being attentive to the quality of those relationships. If we are concerned about delivering good care or being reflective about the shortcomings in our care, we have to turn to relationships.ĚýMy PhD was focused on relational ethics and end-of-life delirium. Almost all of the literature in palliative care about end-of-life delirium takes a very biomedical perspective – etiologies, interventions, expected outcomes. This approach seems ironic because palliative care as a field distinguishes itself from mainstream medicine because it is so focused on relationships and patients as whole people. ĚýSo I looked at end-of-life delirium from a relational perspective - when patients are hallucinating, what does that do to the relationship of trust between the patient and his or her caregivers? ĚýWhen patients are confused, will they be interpreted with the same seriousness by the nurse as if they weren’t confused? I think you could and should take a relational ethical approach to everything under the sun that palliative caregivers encounter, because we can’t and shouldn’t abstract relationships out of whatever is happening. ĚýPatients are only in palliative care for a short time. ĚýWhen they come to palliative care they are already in a state of rapid bodily and mental deterioration. ĚýFamilies are at risk for interpreting palliative care as the cause of whatever changes they witnessed.ĚýĚýOnly recently I was at a volleyball game and one of my teammates asked me, “What do you do for a living?” and so I said, “I am palliative care nurse”, and he says, “I have horrible impressions of palliative care because as soon as we had a palliative care consult for my mother, the doctor was only interested in sedating her, and then she died two days later.” ĚýWhen family members leave our care with damaging interpretations such as these, it’s a moral failure on our part. Not because our care was not clinically appropriate, but because we failed to understand the implications of our care for their moral experience of losing their loved ones. We failed to help them create narratives that they can live with.
Q: How do relational ethics apply to situations where patients and their loved ones disagree about care decisions?
A: Ideally the goals of the patient and the family members do not conflict but when they do, I believe we have an ethical responsibility to family members in and of themselves and not just as extensions of the patient.ĚýAs a classic example, when a patient is in pain and the family member does not want morphine administered but the patient does, it is obviously appropriate to give the morphine. But you still have a responsibility to understand why the family member does not want morphine. I am not saying that a family member has the right to trump the wishes of an autonomous patient, they can’t and shouldn’t, but that doesn’t mean that their perspective doesn’t count.
Q: Is a good death despite the suffering and challenges in managing pain possible?Ěý
A: ĚýEverybody’s end-of-life situation is unique. ĚýSome people will suffer more than others and some of that will be related to the specifics of their clinical situations; some people have cancers that are more painful. ĚýBut suffering is an emotional experience - it is not something you can objectively measure. It is as lived by the person so the person’s personality and approach to life influences how they suffer. ĚýĚýWe need to recognize that in every single situation there are possibilities, if not for an optimal quality of life, at least for a quality of life that can be better tomorrow than it is right now. ĚýI see people working in palliative care as facilitators in helping patients achieve whatever is possible, inviting the patient along this journey and saying, “Here are the knowledge and tools that I have, and if you come with me then that’s what I will provide for you to get from here to there.”
When we talk specifically about the role of the nurse in palliative care, nurses also need to have strong clinical knowledge about expert symptom management. In almost all cases there is the potential to make people more comfortable and when you are able to do that, then their trust comes naturally and you can help patients create a good death for themselves.ĚýWhat is a good death? It’s the best end-of-life experience that this person could have, given the context, their circumstance, their personality and their goals.
Q: You have a new faculty position at the University of Ottawa and you have a lot of experience both in research and clinical practice. Looking to the future, where do you go from here? Any plans?
A: Together with a colleague, Ico-direct the Nursing Palliative Care Research and Education Unit at the University of Ottawa. ĚýWe want to grow this unit and recruit graduate students who will focus their theses on topics related to end-of-life care. And I would like to reintegrate myself clinically into a palliative care unit because my research is informed by clinical knowledge. For me, research and clinical work are two dimensions of one role. ĚýRegarding my research goals, I am very interested in the topic of euthanasia and I think the issue of developing therapeutic relationships with people who might desire death has not been sufficiently explored from a nursing perspective. I think that nurses have a lot of knowledge, expertise and wisdom when it comes to this topic, but when it comes to participating in public discourses, nurses are almost completely absent. I would like to develop a nursing angle of vision with respect to the whole topic of desired death and assisted death.
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