Authors

  1. Ferrell, Betty PhD, MA, FAAN, FPCN, CHPN

Article Content

I am driving on a Los Angeles freeway. It is a beautiful morning, and I am enjoying a day off. It is midmorning, so I have avoided the intense traffic. I am listening to music, relaxed and embracing the fact that in 15 minutes I will be on a golf course with friends. Then everything changes.

 

Right before my eyes, a car speeds ahead to my left, crosses before me, striking another car, to my right with such intensity that the second car becomes airborne. The struck car flips completely in midair then crashes with extreme force into a cement wall. The speeding car seems to explode with the force of the impact, and I see car doors, bumpers, and steel panels fly wildly with one car propelled to my left and the other now upside down to my right. I focus on maintaining control and avoid flying metal. It feels at once both high speed while also an unreal, slow-motion scene. I am trying to decide if I should keep moving to avoid further collision or pull over to assist. As I look in my rearview mirror I see many people having pulled over, leaping from their cars and assisting to pull people from the shattered cars. I pause, remember to breathe, then continue driving as I look in my rearview at a crowd of people on cell phones, screams, bodies lifted from the cars, and sirens already approaching from the distance[horizontal ellipsis]

 

I reflect later on these moments, and I am reminded of why I have devoted my career to palliative care. While palliative care is increasingly involved in sudden deaths in acute care settings, such as emergency rooms, most of our care involves illnesses that extend months to years. In more chronic care, time stands still in different ways. Weary family members and nurses often shift from the sadness of an impending death to an unspoken wish that death could come soon. Serious illness involves immense burden with symptoms, complex treatments, hospitalizations, and enormous work for family caregivers. But deaths following prolonged illness also come with abundant opportunity-time for forgiveness, time to say goodbye. Deaths from cancer, heart failure, AIDS, and organ failure create a time for last vacations, unspoken words, photographs, and legacy. I am struck by the awareness that the people being lifted from their cars had no such luxuries.

 

As I think about the lives that abruptly end compared with those whose deaths are preceded by a final chapter, I am reminded of the central place of nursing in the precious time of dying. It is the bedside nurse who distinguishes the patient report of physical pain from the muted expression of suffering. It is the neonatal nurse who guides young parents in making handprints or clipping a lock of hair from a baby who will never go home. And it is a nurse who guides the prodigal son who has returned home, in the bathing of his father, knowing this bath is more than bodily care. It is a bath that will be remembered forever and through which both men are changed-perhaps redeemed-by the bath's end.

 

This issue of JHPN speaks of the messy, chaotic, burdensome care of serious and prolonged illness. Ethical conflicts, symptom management, caregiving across the span from perinatal to older adult, each of these articles is a story of that last chapter of life, which often is prolonged. Nurses are present to take what is messy and overwhelming and make it a sacred time.

 

I am reminded of the messiness of caring as I recall one of my first hospice patients when I was a young nurse; young enough to still want everything to end neatly-everything "fixed." I was caring for a 40-year-old mother of 2 young girls dying of breast cancer. I had developed a good relationship with her overwhelmed husband, and one day in a "driveway" conversation (every hospice nurse has them), the husband asked me if he could speak honestly. "Of course," I offered, prepared to hear his grief and despair. Instead the husband told me that he and his wife hated each other, had been separated, and reunited only for the children's sake when her terminal disease was diagnosed. He was angry that it was taking too long. And he was very angry at having to act the part of a devastated husband. At this point in the conversation, I was devastated. I didn't sign up for anger, hate, and mess. I signed up for the "loving families at the bedside" version of hospice.

 

I shared the details of this patient and family with my hospice nurse colleagues. This woman's dying extended for countless weeks; all the nurses restrained their personal feelings about the husband who became increasingly absent, and they stayed the course as a woman held on to every day of her precious life as a mother that she could. As the woman's vision was lost from her brain metastasis, the nurses sat at her bedside to finish knitting the blankets she wanted to leave for her daughters.

 

Years later, I saw one of her daughters, now a teenager, and she immediately recognized me as one of her mother's nurses. She thanked me profusely for the care of her mother and how she cherished the knitted blanket; the contrast of a prolonged, difficult illness in my memory and a memory of a good death of a beloved mother by a daughter.

 

[horizontal ellipsis]I don't know if the people involved in the car accident survived. Watching the exploding cars and intense force gives me reason to fear they have not. I pray they survive, but I turn off my music and drive in silence, aware that before my eyes, in just seconds, without warning, lives may have ended. It is all that I can offer; silence to respect the frailty of life, the thin line between life and death, the thin veil between the assumption of immortality, and the reality that for many, death comes unannounced, without warning. And I am once again grateful to be a palliative care nurse.

 

Betty Ferrell, PhD, MA, FAAN, FPCN, CHPN

 

Editor-in-Chief

 

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