Tremendous effort for the past years has focused on describing palliative care as extending throughout serious illness and on distinguishing palliative care from end-of-life care. This focus has been incredibly important in shaping the field and in extending care across illnesses and populations. This issue of the journal, however, brings us back to the reality that the end of life, the actual time of death, is a sacred time and an aspect of patient and family care still worthy of attention.
Most nurses can recall the first death they witnessed; unfortunately, in our profession, this first death was often a time when the nurse felt unprepared and unhelpful. Nurses who are seasoned practitioners can usually recall the "good deaths" as well as the "bad" and how these experiences have challenged them personally and professionally.
The articles in this issue give us hope. There is much progress in preparing nurses to be competent, compassionate witnesses to the last moments of life because nurses are overwhelmingly the clinicians most often at the bedside-whether in a neonatal intensive care unit, home, nursing home, oncology unit, or pediatric unit-at the time of death. The fourth edition of the NCP Clinical Practice Guidelines for Quality Palliative Care devotes one domain to this area, "Domain 7: Care of the Patient Nearing the End of Life."1 Advances in our profession have resulted in simulation learning, so students can practice skills of comforting families and care of the body after death.
The literature and clinical stories are increasingly sharing narratives of the "good" and "bad" deaths. There is growing awareness that the deaths that haunt us, the "bad" deaths, are those occurring after futile resuscitation, those in which patients struggle in pain or with dyspnea, and the deaths surrounded by a conspiracy of silence by the medical team, which have left families completely unprepared. However, there is also a changing legacy, as more often we hear of the good death, the times when the final hours are a time of families feeling prepared and involved, when nurses transform a hospital room to be a sacred space for an infant's short life ending or when an elder remains in their home, the nursing home, bathed by the nursing assistant they trust and love.2,3
As the field of palliative care extends in many directions, it is good to return to the place we began when hospice was a new revolutionary idea. Care at the time of death is ultimately our litmus test; it is our mirror and our measure of our worth.
Betty R. Ferrell, PhD, CHPN, FAAN, FPCN
Editor-in-Chief
[email protected]
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