Consensus with Compassion and Caring in Trying Contexts

From Nursing Ethics; 1880s to the Present (p. 352-356)
Used by permission 2024 © Marsha Fowler
Chapter 11 Notes

I was the second child in a large, Irish Catholic, lower-middle-class, suburban fam- ily, which emphasized attention to the less well-off and contributions to society. Growing up in the 1960s, I was aware that opportunities for women were limited. Always a science nerd and interested in helping others, I chose to study nursing in college, despite some pushback from certain family members.

Nursing was a perfect choice for me—interesting and challenging both intel- lectually and emotionally. Being a nurse allowed me to seize opportunities and learn and grow. Yet, my nursing education and initiation began in the 1970s— tumultuous times characterized by questioning established rules and institutions. Hence, I constantly questioned and pushed the envelope in terms of what nurses were able and allowed to do. I was always advocating for change—from refusing to wear my white cap at nursing school graduation, to challenging physicians when I felt they didn’t really “see” the patient or I was uncomfortable with their medical decisions, to spearheading curricular innovations at schools of nursing, pushing for different policies or norms at the hospital unit or institutional level to support patients, and seeking a voice at larger health-care tables.

My first nursing position out of college was on a fast‑paced neurology/neuro- surgery unit at the Massachusetts General Hospital. We cared for patients ranging in age from 16 to well over 60 with acute onset multiple sclerosis, glioblastomas and other brain tumors, para or quadriplegia from accidents, and other devastating conditions. I observed courage, defeat, and defiance in the face of overwhelming prognoses. I wondered how much the will to fight mattered in terms of patient outcomes and wondered how to help people die well. Subsequently, I worked as a nurse in community hospitals where my responsibilities ranged from caring for people with acute and chronic illnesses and injuries, to delivering babies, staff- ing the ambulance, and being “in charge” of the entire hospital. I wondered about how institutional decisions were made and priorities set, how resources should be distributed, and what should count as expertise. Later, I worked on an NIH-funded Clinical Studies Unit caring for adults and children undergoing experimental bone marrow transplantation—all were very ill, their care and course were extremely complicated, and almost everyone died. I wondered about the value and limits of research, why we spent so much on trying to save people instead of on keeping people healthy, and again how we ought to help people and make decisions at the end of life. Still later, I volunteered for one of the first home hospice programs in the US and questioned how we support patients and their families during and after terminal illnesses. I decided to study public health and enrolled in a master’s pro- gram in community health nursing.

My practicum was in a daycare facility for patients with chronic mental ill-nesses, some of whom had been released into the community after spending dec- ades in state institutions. I wondered about the responsibilities of society to care for vulnerable people and the (often unanticipated but sometimes negative) conse- quences of policy decisions seemingly made in good faith. I taught public health nursing in California and wondered and worried about the limits of our health-care system, especially in reaching youth and people in remote locations. Working in Brazil with Project Hope intensified my interest in many questions about allocation of resources and health-care systems, as I witnessed poor children not receiving desperately needed care, health-care professionals sometimes shirking their moral obligations to patients, the consequences of haphazard allocation decisions, and the challenges of providing nursing care sometimes without water, or electricity, medications, or needed supplies. I came to the National Institutes of Health around the same time as HIV/AIDS (although it wasn’t yet called that). In those early years, I cared for so many young, previously vibrant men in the prime of their lives who were suffering from a new, very scary, seriously debilitating, usually fatal, and frequently ostracizing illness that we were trying desperately to learn about. I wished that we knew better how to protect people, to treat them, and to help them at the end of their lives. I worried about tensions between individual interests and the public health, about stigmatization and sometimes violence, about family conflict and the contours of family. I wondered about the limits of health-care providers’ obligations when faced with substantial but uncertain risk, about when, if ever, it was okay for health-care providers to refuse to care for certain patients, about the crucial importance of research and the ethical landmines that it sometimes posed, about the need for honest communication about the unknowns and the value of sharing information.

These experiences I had providing nursing care and teaching nursing were ex- tremely rewarding. I did not appreciate that many questions which troubled me or things I wondered about were questions of ethics. Although nurses and physicians and other health-care professions have had a long-standing professional ethics, “bioethics” and its language and methods really only emerged in the late 1960s and 1970s in the US. In the various places I worked during those years, I was not aware of ethics committees or any persons devoted to ethical issues. I was well aware of efforts to promote women’s rights, civil rights, gay rights, and question things. But it was only later that I learned that the Hastings Center and the Kennedy Institute of Ethics were formed around this time, and that the Karen Ann Quinlan case and the Tuskegee syphilis study were in the news. I gradually realized that I would benefit greatly by learning more about bioethics to help me think about and address many of the issues that I cared about. While still working as a clinical nurse specialist primarily focusing on HIV/AIDs, I went back to school for a PhD in Philosophy. Although it was not all smooth sailing, and I had moments of almost existential cri- sis, the philosophy PhD put me in a good position to seek bioethics opportunities. In the late 1990s, the NIH Clinical Center formed a new Department of Bioeth- ics. I was one of the first to apply to work there. The NIH Bioethics Department provided opportunities for me to grow in many ways. I had support to do my own bioethics research. I served as an attending on the Bioethics Consultation service. I mentored bioethics fellows from a wide range of disciplinary backgrounds. I appreciated being involved in providing ethics education and consultation to nurses as well as to patients, clinicians, researchers, and others. My nursing background and skills served me well as a bioethics consultant and researcher, in ways distinct from some of my bioethics colleagues. I felt that I had an advantage when talking and listening to patients, families, and caregivers not only because I had a sort of insider understanding of what they were experiencing, but also because I had some practice fostering these kinds of relationships. At the same time, being a nurse sometimes presented obstacles. On more than one occasion, I was asked about my credentials by a skeptical consult requestor. For one of my early research publica- tions, I was advised to remove RN from my title (I didn’t). When I applied to be the Head of the Department, the search committee struggled with whether or not a nurse could or should run the department instead of a physician (I got the job). During many years in the department, I have had the opportunity to collaborate and learn from others who are smart and engaged but have different disciplinary backgrounds. Over time, I also seized opportunities to engage in cutting‑edge topic areas and to represent bioethics as a nurse-bioethicist on committees and working groups of various kinds. In 2022, I was still head of the Department of Bioethics and have had many opportunities to participate in activities of national importance.

Starting in 2010, I had the privilege and honor of serving as a Commissioner on the US Presidential Commission for the Study of Bioethical Issues (PCSBI). As I see it, inviting me to be a commissioner checked several boxes—a bioethicist, a nurse, a woman, and a federal government employee. Of the six US National Bio- ethics Commissions appointed since 1974 by either the concurrent US President or the US Congress, this was the first bioethics commission to allow inclusion of federal government employees, and only the second bioethics commission that had a nurse as a commissioner (Dr. Retaugh Dumas served on the National Bioethics Advisory Commission, 1996–2001). For six years, as a Commissioner, I worked alongside my fellow commissioners and a talented staff to tackle timely and com- plex issues as requested by the US President and the US Secretary of Health and Human Services, as well as issues that were at the top of people’s minds at the time.¹ My perspectives (and possible biases) that evolved from my work as a nurse and a bioethicist were brought to bear in several ways. One example was the report we did on the sexually transmitted disease (STD) studies conducted in Guatemala in the late 1940s, an egregious example of research deemed “ethically impossible.” As Commissioners, we agreed to proceed cautiously in judging people and studies by standards and norms that were not all in place at the time. My familiarity with research ethics and the principles for what makes research ethical were valuable to our evaluation of these studies. My familiarity with the many regulations, guide- lines, and literature that have emerged since that time was also helpful in assessing the strengths of oversight and safeguards operating today that greatly reduce the possibility of such unethical research happening again. The Commission’s report about Ebola raised some issues reminiscent of my experiences caring for patients with HIV. When we considered testimony from nurses and doctors working in West Africa with Ebola patients, I was proud to be a nurse and humbled by their cour- age and moral compass. My patient care and research experiences also were useful when the Commission considered the issue of capacity to consent as part of our report on Neuroethics and the BRAIN initiative. When the Commission undertook a project on incidental findings, my experiences with how patients receive and understand information were useful to our deliberations. My experiences with pa- tients and teaching nursing students helped me to contribute to one of the important roles of a commission like PCSBI, to be responsive to the public and to strive to inform and reassure them about timely and challenging ethical issues.

In mid-2022, the world is in its third year of a devastating global pandemic from COVID‑19. Nurses have been an essential backbone of the pandemic response, car- ing for so many sick and dying patients, vaccinating millions, and educating the public, among other things. Nurses, and other health-care professionals, have been doing all this under conditions of uncertainty, fear, scarcity, evolving information, and rampant divisiveness. They are frustrated, tired, and distressed. Yet, they keep showing up, providing quality care under challenging circumstances, and saving lives. The ethical challenges inherent in nursing care during a pandemic are many, some familiar and some novel. Nurse-ethicists have an important role in supporting

ethical decision-making and resources for practicing nurses and nurses in training, and all of us have to work together to apply lessons learned to improve and assure ethical workplaces, support nurses and the health-care workforce, and prepare for future pandemics. We have certainly learned that the exigencies of a pandemic with a novel, highly transmissible, and pathogenic virus put considerable strain on the systems in place to provide needed patient care. We have learned that health-care providers need support, more than we usually provide, but as importantly we need to bolster the systems in which health care is delivered. We have learned how valuable bioethics can be to making decisions that consider both data and values for individual patients, families, and clinicians, as well as for organizations and society. Bioethics can valuably help in anticipating and in dealing with the consequences of decisions made and omitted, help us learn to disagree but still come to a workable consensus, and remind us how important it is to show compassion and caring for each other.