1. Ferrell, Betty PhD, FAAN, FPCN
  2. Rosa, William E. PhD, MBE, ACHPN, FAANP, FAAN

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The year 2020 will long be remembered for many profound challenges. Such challenges include the COVID-19 pandemic, which has exposed the strengths and weaknesses of an imperfect health care system. Extreme societal inequities in health care, particularly with regard to people of color, have also been exposed. The social unrest and upheaval that have resulted will hopefully mark the beginning of positive social change.


The Black Lives Matter movement has revealed countless ways that systemic racism sustains inequalities that are prevalent in all aspects of society. Individual and institutional biases-both implicit and explicit-further fragment social consciousness. Hospice and palliative care professionals are challenged to examine their own role in this crisis by addressing how our care fails to fully respect and honor the diversity of patients and families. Racial injustice decreases access to preventive health services, early diagnosis of disease, and equitable, inclusive treatment. However, it also profoundly impacts how people die and how they are cared for throughout serious illness and at the end of life.


Racial disparities are critically important to address because they represent some of the most extreme forms of injustice. There are, however, many forms of injustice that pervade society, health care, and even our immediate world of hospice and palliative care. Injustice is found in discrimination and violence against LGBTQ+ communities, the poor, the mentally ill, the homeless, the incarcerated, and any group who is a minority in numbers or who is on the receiving end of imbalanced social power. Palliative care programs have begun to examine implicit biases, staff education, and processes that may contribute to injustice, often focusing on 1 minority group at a time. Such quality improvement efforts may be aimed at better care of Black communities or LGBTQ+ families and support systems. These "steps" toward improved care are vital and should be applauded. However, they should be recognized within a broader context of what we call care of "the other."



In the early days of our End-of-Life Nursing Education Consortium (ELNEC) training, we used a video produced by a hospice program at Angola Prison, a Louisiana state penitentiary, as part of our Culture module. Angola prison was known for housing many death row prisoners and those convicted of terrible crimes. The hospice at Angola Prison became nationally recognized for the care they provided to these inmates at the end of life, including using inmates as hospice program volunteers. The video included a scene in which the hospice social worker was conducting a volunteer training program, which in many ways looked quite familiar to our ELNEC course participants in its approach to preparing the volunteers to provide care for their dying fellow convicts. A pivotal point in the video comes when the social worker asks the volunteers: "What was your first experience of death?"-also a usual question in a hospice volunteer training. The social worker shared how the group became silent, and after a long pause, one of the prisoner-volunteers responded by saying, "Ma'am, for many of us, the first experience with death was with the person we killed."


This moment in the video serves as a critical point in our ELNEC Culture training because it so profoundly recognizes that culture is beyond the color of skin, language, or other personal attributes. Culture is about life experience, meaning, tradition, family history, and a cascade of other factors that make each person unique.


Being able to recognize "the other"-the person who is different from me-is essential to prepare the nurse to hear the story, including the brokenness, the pain, the loss, and the current meaning of illness and death within the context of a life. Recognizing "the other" is based on recognizing one's implicit biases, acknowledging the privilege that most of us possess as educated professionals, and seeking to view another's reality through the lens of the life we are serving. Even the most skilled and compassionate nurse likely brings to each day some implicit biases that exhibit as stereotyping, prejudices, and feelings that impact our care. We each have our own strengths and our own weaknesses. As a nurse in Southern California, perhaps I have become better at providing respectful care to Black or Latino patients, but am I as assured in my care of those with mental illness or the patient who is transgender? I may be a strong advocate for spiritual care, but how comfortable am I when the patient's religion is unfamiliar to me or in sharp contrast to my own beliefs?



As nurses, we stand on a solid foundation of nurse leaders who have created much of the scholarship and practice related to ethical practice, social justice, and transcultural care. The nursing profession is based on a commitment to the other, to patient-centered care, and to care that sees the person through a lens of respect and through action that engenders trust. Nurses have historically championed care for those most in need. Public health nursing has taught us a great deal about entering the world of the other and seeing the patient's reality as sacred ground while considering the social, economic, political, and environmental health determinants that inform the quality of their life and their death.



Ibram X. Kendi writes, "The only way to undo racism is to consistently identify and describe it-and then to dismantle it." True progress toward more equitable care will start with the steps we take as a palliative care community in addressing the needs of disenfranchised groups and minority populations, and advocating for local and national policies that reflect more inclusive care. However, such progress will only be advanced through efforts that foster a philosophy of care that is based on uplifting, healing, and embracing the other-care that transcends differences and serves each person with respect. Such a vision requires not only a logistical remodeling of how palliative care is delivered at the system level but an interior recalibrating of our hearts, minds, and intentions. It will require a strategic personal and collective commitment toward identifying, describing, and dismantling the worn constructs of prejudice responsible for centuries of needless and painful suffering.


The invitation is to embark on a journey that reintroduces us to the highest ideal of our self and our work in this era of pandemics and injustice. How much of our worldview are we willing to surrender to put the other at the true center of our work? In what ways can we be accountable for the biases that inform our relationships with the communities we serve? What needs to happen before we realize there is no "other" and that we are, in fact, deeply interconnected and all worthy of the same love and kindness, particularly in the time of a serious illness?



Palliative nurses have an opportunity to fully embrace this time to be role models and leaders. Nurses can be a voice for those who are too ill or overwhelmed to speak for themselves. Advocacy begins with listening-one of the essential skills of our specialty. By listening deeply to the stories of the marginalized, we are best prepared to provide culturally respectful care and to serve as advocates. Now is the time to listen even more deeply, so that we can seek to understand the diverse life stories and experiences of those we serve. To listen, to see, to know, to learn, and to care for-this is our privilege and our gift.



Betty Ferrell, PhD, FAAN, FPCN


JHPN Editor-in-Chief


William E. Rosa, PhD, MBE, ACHPN, FAANP, FAAN


JHPN Editorial Board Member