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Death in Public Health

Kara RobinsonKara Robinson

As public health professionals, we dream about detecting cancer  early, about providing addicted clients with effective programs, and about complete prevention of child abuse and neglect. We believe that people and systems can be changed, and we research and implement interventions that promote healthy lives, not cut short by preventable diseases or injuries. Yet, it was a small research project I completed during my MPH program about end-of-life care that most significantly informed my work as a nurse and public health professional.

I interviewed clinicians who had long cared for HIV/AIDS patients at Johns Hopkins Hospital, asking them questions about end-of-life care for persons living with HIV/AIDS. These clinicians, involved both in direct care and in public health, described the profound differences between their work during the 1980s in the early days of HIV/AIDS care and their work in the current era of Highly Active Antiretroviral Therapy (HAART) and other advances in HIV/AIDS treatment. They described the optimistic treatment options they can now offer their patients, and the victories, such as effective treatment for opportunistic infections once considered fatal. They also spoke, however, with great emotion about a different type of care they provided for their patients in the pre-HAART era, when they so often reached the end of the limited treatment options and medical interventions they could offer. They provided symptom relief, but more importantly, they spoke of simply “being with” their patients at these times and described again and again the “honor” of caring for patients in this way.

Feeling an unexplainable tug toward end-of-life and palliative care despite my public health training, I took a job as a hospice nurse in Missoula, Montana, perhaps an unusual step for a graduate of an MPH program. Rather than work in disease prevention, I entered a work environment where disease finally took its difficult course and we knew our patients would die, where I abandoned a population-based focus and cared for about ten patients at a time.

As I learned the role of hospice nurse, I discovered for myself the power of this type of work that the HIV/AIDS clinicians described. I cared for patients in a variety of situations, patients and their loved ones who had made peace with death and those who never stopped wrestling with its reality, patients who had been fighting illness for many years, and others whose illnesses were brief. I acquired skills and knowledge that allowed me to relieve symptoms, but in almost every situation that I recall, there came a time when nothing remained to do but to sit and “be with” a patient or their loved ones. It felt that the foundation of our work as hospice care providers was our ability to be present with those we served in such moments.

Now, I again work in public health for the Missoula City-County Health Department with the Nurse-Family Partnership of Montana. Our charge is prevention of child abuse and neglect; it is also health promotion, as we look towards better prenatal health for our clients. But my formative experiences caring for people at the end of their lives inform my work with clients at a different time in life’s spectrum. I serve clients, many of them in vulnerable situations, preparing to usher the lives of their first infants into the world. The Nurse-Family Partnership is a home visiting community health program for low-income, first-time mothers. The program’s heavily researched outcomes show long-term improvements in participants’ health, educational achievement, and economic self-sufficiency. However, the model importantly uses the nurse-client relationship as the primary tool and foundation for learning and growth in the families it serves. This relationship, this ability to simply “be” with a client at critical times, is the lesson I summon from my experiences working in end-of-life care.

Public health work, with its big picture focus and dreams for change, carries with it the potential to draw us away from the individuals whose lives we seek to affect and from our humanity at times. As a public health professional, it has served me well to recall the raw moments in life where we arrive, sometimes abruptly at the precipice that is our mortality, empty-handed of interventions and ideas for change, where the only thing we have to offer is a “being with.” Perhaps, in sitting for a while with someone at the edge of that frightening place, we rediscover the reason for our work, that ultimately every intervention filters down to individuals and their unique vulnerabilities. Likely, it is some such moment that inspired us to do the work we do in the first place.

Kara J. Robinson, MPH '2007, RN

Comments

  • Kim

    www.eachholyhour.blogspot.com 03/01/2013 08:02:49 PM

    As I grow older, I become more and more appreciative of each healthcare professional who takes time to truly listen to their patients with an imagination that leads to compassion. These professionals are to be particularly found in the context of the gentle, sensible care of hospice, which I believe is one of most counter-cultural developments in modern, Western healthcare to date. Its genius lies in that same compassion, imagination, and a willingness "to be" with people. Indeed, every time a caring healthcare professional enters a home (a practice that was once commonplace), something truly special happens, not just for the patients, but--as Ms. Robinson writes--for the healthcare professional as well.

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