As a new graduate RN, I was confronted with the case of allowing a natural death for a 6-month old baby girl who survived an anoxic brain injury during an elective surgery. Post-surgery, she arrived on the unit where the staff were told that her family had determined that her quality of life would not be consistent with her parent’s values. She was left in the care of young nurses who received no training that would prepare them to allow a beautiful baby girl to pass without treatment or family presence, only with pain medication and personal touch from the nurses who possessed the moral courage to take care of her. Over 25 years have passed and I can still see her face and remember her name.
Thus started a passion for learning and participating in bioethics. Today, I serve my community as the director of bioethics for a community hospital in East Los Angeles and am currently pursuing a PhD in nursing bioethics from Duquesne University.
Little did I know that the path presented to me over the years would place me directly in the path of the greatest pandemic seen in 100 years. The skills developed as a nurse and ethicist have given me a unique perspective on the realities associated with crisis care, moral objection, moral distress, and emotional exhaustion. My personal religiosity, moral fortitude, and spirituality have been challenged as a result of seeing the faces of hundreds of patients that would leave this earth sooner than expected. Preparation through education and experience has allowed me the opportunity to provide pandemic support to my organization, associates, and the community I serve.
During the COVID-19 pandemic, the clinical ethics consultation team at my organization has consisted of four key members: an ethicist, nurse ethicist, and two physicians. We received an average of 7 cases for consultation per month until the pandemic surge that began at the end of November 2020. In December 2020 and January 2021, we received over 100 consults each month, and we continue to receive many requests. Each of these cases is more heartbreaking than the next. Faced with strained resources (people, space, and equipment), we seek to provide ethical support to providers, patients, and families. As part of that support, we discuss goals and philosophies of care in a way that provides honesty, transparency, and reality to patients and families. The reality in East Los Angeles is that many patients with COVID do not survive until discharge, especially if intubation is required.
Because of this reality, physicians need to provide honest, realistic prognoses to patients and families early in the admission. Delayed or inconsistent communication that provides varying potential outcomes and, perhaps, false hope, does not help patients and families. Before physicians and other providers fully understood this, families often related they were “in shock” at the rapid decline of their loved ones. They felt burdened by the decisions before them, and they were often angry and in denial about the proposed long-term prognosis provided. Conversations related to philosophy of care never happened.
Although there is now greater awareness of the need for honest communications, challenges, such as visitation restrictions, remain and cause frustration for patients and families. Providers, accustomed to time and opportunity, have been required to have multiple code status and ineffective care conversations daily, with little time to allow patients and family to absorb and comprehend the life and death situation before them.
As a nurse ethicist in a predominantly Hispanic population, I understand the ethical and moral imperative to ensure transparency related to the ethical principles of autonomy, beneficence, non-maleficence, and justice to our community. Our organization is particularly focused on serving our community’s needs, protecting our underserved patients and families, and fighting for resources to ensure that every patient is treated with respect. As resources thinned, the burden to provide transparent care heightened. Through much of December and January we were at greater than 100% bed capacity with 0% ICU capacity. Equipment, people, and space were extremely limited. The ability to provide updates to families became even greater as the increase of patients accompanied an increase of associates unable to work as a result of their own COVID-19 infections. Through it all, the organizational leadership and associate and physician engagement were committed to providing care to all.
Bioethics is deeply engaged to support the efforts of the clinical teams, physicians, patients, and families. Daily transdisciplinary rounds the need for consultation. Each day the team meets to discuss the cases and reach out the physicians, nurses and other associates to provide support where possible. As the number of cases began to soar, it became apparent that the difficult code status and goals of care conversations required the bioethics team’s support to communicate with patients and families as the provider’s time was required at bedside treating patients.
Providing ethical support during the pandemic has identified the importance of the traits needed by bioethics consultants. Consultants must be aware of their core values and beliefs that drive their professional and personal mission in order to address barriers to effectiveness or may lead to moral objection. Professional integrity should supersede personal integrity as a method to promote conflict resolution and promote alignment during consultations between provider and families. Support is particularly needed for providers because despite their many years of experience providing critical care, the acuity and outcomes related to the pandemic has created extreme cases of moral distress and emotional exhaustion.
Communication is vital in the transmission of information. The ability to allow families to express anger, frustration, sorrow, and to seek understanding requires the ethics consultant to listen attentively with precision and empathy. A significant challenge related to bioethics consultation and the provision of justice and autonomy has been communication. Limited visitation and the shear volume of patients challenge the ability to exchange information and provide needed support.
Reinforced is the requirement to practice care ethics. Care ethics is a feminist philosophical perspective that uses a relational and context-bound approach toward decision making and morality. The term ethics of care refers to ideas concerning both the nature of morality and normative ethical theory. Key to the theory of care ethics is that there is a commitment that the one-caring and the cared-for person may exhibit reciprocal commitment to each other’s well-being.
The consultant should exhibit moral traits that are influenced by the relationships we have with those around us that include care and compassion in addition to principlist ethical tenets. Listening to family fighting for a loved one whom they can’t see, touch, or communicate with in person is heartbreaking.
I was placed in this unique situation to be of service intentionally, not by mistake or happenstance. I was provided the experience over many years to be able to contribute in a small way. I don’t take my obligation lightly. This has been my contribution to the pandemic “war effort”. I only ask that, as nurses, we never forget the world behind the patient we see—their experiences, their hopes, their desire for respect and safety and the fear that they and their loved one’s share. Each patient is an individual, with individual needs.
I developed COVID-19 during the surge. It was while I was holding the hand of a patient who was preparing to die. I needed to be able to lean in to hear her over the hi-flow oxygen that was blasting. Despite the personal protective equipment and the risk, it was the right thing for me to do, and I would not change that. I assured her that we care, that we would continue to do everything for her, and that we would not let her suffer. I hope that I wasn’t the last person she was able to talk with, but I’m grateful that I had the opportunity to be there for her and hope I provided some comfort.
Michael Jordan in a PhD student in nursing ethics at Duquesne University in Pittsburgh, Pennsylvania, and director of integrated research, bioethics, and palliative care at Adventist Health White Memorial in Los Angeles.