For 22 years, my husband and I lived together with our 3 aging parents, my mother and father and mother-in-law. All three died at home, at ages 89, 103, and 101 years, respectively, in the comfort of their beds. I vividly recall my father's death. He was approaching his 104th birthday and had been growing increasingly frail. It was 11 PM on a Sunday evening when I visited my father's room to check on him given that he had, uncharacteristically, retired very early in the day. I touched his face and he opened his eyes and smiled slightly. I checked to see whether his extremities were warm and they were. I had learned from our hospice nurse, when my mother was dying, to check the temperature and color of the feet and hands. Cold and discolored extremities are often a sign of impending death. I leaned in and whispered in his ear, "Have a good night, I will see you tomorrow morning." Half an hour after retiring to bed, our caregiver alerted us that my father "was gone." She heard his final breath on the baby monitor. He died peacefully, the way he wanted to, at home.
"Dying at home" was a conscious choice originating with the expressed wishes of our parents and discussed with our parents' primary physician who supported us in the decision and assisted us at every step through the process. We worked with our physician on how to manage direct care, whether to employ in-home hospice, and when to coordinate communication between the physician and the funeral director, should death occur suddenly. We employed in-home hospice for my mother and mother-in-law who were extremely debilitated as the end approached. However, my father was very engaged until the final day of his life, so in-home hospice was never a consideration. It has become for us a family value and practice to die at home if possible. I only hope that my own children share that value.
Stanford University's palliative care site asserts that 80% of Americans have a strong preference to die at home.1 Although the National Hospice and Palliative Care Organization reports that of all US deaths in 2011 only 42% of those dying experienced some form of hospice care in a variety of settings including home, residential facility, or acute care hospital.2 The majority of Americans do not die at home.
It is difficult to talk about death, to even think about and assert preferences for where and how to die. There are cultural and individual differences on this issue that need to be respected. Although dying at home may be a strong preference for many, it is a cultural taboo or a physical impossibility for others. Nurses have not only the skill set but the obligation to explore with patients and families their preferences and the options available for end-of-life care. Dying is just another part of living, and the holistic philosophy demands a clearer focus and serious conversation concerning end-of-life care. For as the Buddha said, "The trouble is, you think you have time."
-Gloria F. Donnelly, PhD, RN, FAAN, FCPP
Editor-in-Chief
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