The Dance of Palliative Nursing

This issue of the journal includes several articles on what I call "the dance" of palliative nursing. The topics range widely from ethics committees, innovative pediatric palliative care, family caregiving, hospital readmissions, and suffering. The details of these articles describe the dance of nurses, as they interact with patients and families, moving through the final months of life, navigating health care systems, cultural clashes, family dynamics, and the ever present conflicts between the desperate innate desire to prolong life while confronting the awareness of lives that are ending too soon. Death comes with life/work incomplete, amid the psychological, social, and spiritual realities that converge and often create suffering beyond measure.

So, when I write the words "the dance of palliative nursing," make no mistake that I am envisioning a beautiful ballet, elegant waltz, or a dramatic tango. I'm thinking more of the eighth-grade dance at the local junior high: the many unwilling participants (eg, eighth-grade boys) who practice avoidance by taking prolonged trips to hide in the restroom, the stepped-on toes, and the terror shared by all that the next song may be a slow dance. That's the one. If these memories have escaped you, lay down the journal and go consult with most anyone aged 12 to 13 years old.

I was reminded of this dance recently when I found myself assisting a patient with lung cancer who had refused all professional advice related to her rapidly declining health. Despite many available care options, she insisted on staying alone, clinging desperately to her independence. She had lied to her hospice providers to convince them that she had help available in her home. But to the contrary, she had suffered several recent late night falls resulting in hours on the floor until discovery and the summoning of the local fire department. She was inclined to smile and nod when advice was given and then do exactly as she pleased.

And so on this day, I was called to assist as she was stranded in a bathroom, on a very low toilet, in a much weakened state where she now was unable to move. She had not made it to the toilet quite in time, so she sat amid urine and feces in a greatly compromised state, her pride shattered, her ego destroyed, which had been fiercely protected throughout her illness.

In a space hardly big enough for one small person, the patient, another woman, and I moved closely together in a chaotic dance, in which it was impossible to achieve the goal of lifting her and escaping the mess. There was an intense standoff as she refused the reality that stronger assistance was needed. At one point, I found myself body-to-body, stare-to-stare in a very uncomfortable position, supporting the patient amid the mess in a half-sitting, half-standing position, as she faced one final indignity.

Through a tense negotiation, she agreed to allow a fourth person to enter the bathroom, after we carefully cleaned her, protected her privacy, and lifted her from the commode. And in that moment, eye-to-eye, as nurse and patient danced in this very small space called life, I was reminded of what matters.

Our role as palliative care nurses is not to orchestrate picture-perfect, well-synchronized, choreographed dances. It is to be at the eighth-grade dance in unfamiliar spaces, in clothes that itch, stepping on toes, and often wishing desperately, that the last dance would come soon.

My dance partner died 2 weeks later, on her terms, in her home, and nearly alone (as she had just fired her nursing assistant), but fortunately, shortly after her hospice nurse arrived, so in the end, not dancing alone.

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

Editor-in-Chief

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