The art of being a hospice genie: experience, presence, and caring

Blog by: Amy Getter, a hospice nurse who blogs at hospicediary.com

I had been drained with frustration and immersed in the medical disaster we call home care this past week. Perhaps if I had never known the simplicity of visiting hospice nurses, before the medical giants of organizations and corporations had grabbed such a firm hold to significantly alter just a home visit by a nurse to a dying person, I would not have recognized what was startling.

Okay, I have agreed that it is imperative to standardize what we do, what we say, ensuring that our care is cloaked in the vestiges of the acceptable and researched and validated hospice and palliative care approach.

Last week we learned of a new shortage and increased cost of a medication (atropine) used for years for an end of life symptom: to reduce the gurgling sounds present at the last hours of many dying people, what hospice nurses term “respiratory congestion” and what the untrained average person still might call “the death rattle”. Very simply; it is no longer profitable to produce this very inexpensive medication. And some studies would report how ineffectual it is, though most of us who have initiated atropine drops early on, before respiratory congestion becomes something heard down the hall of the room where someone lies inert in their bed, breathing in gasping breaths- we would share with you in fact, it did help. It’s one of the latest terms I frequently read in research reports, with a sneering mention of the “anecdotal evidence” (just you uninformed hospice staff who work at the bedside and observe the results who might believe something)… not according to the lengthy research data gathered and scientifically reported that might question or even invalidate what you do.

This past week also brought a stunning fact to light; a medication that I used well over a decade ago as a daily injection to treat my patient’s bowel obstruction, (and long since beyond the trial period of patent and trademark regulations requiring exorbitant amounts of reimbursement to the pharmaceutical research and development team); that same medicine, for that same treatment, is suddenly difficult to obtain, but not the once-a-month-injection at the cost of nearly $4,000 dollars. (Yes, I am talking about Octreotide.) Research and Development, latest studies that defunct effective treatments, insurance reimbursement issues clog my hospice pores!

Enough ranting; back to my visit.

I called to say I was stopping by. The husband, a little harried sounding on the phone, said “That would be great”. As I entered, I could hear his dying wife mumbling in the bedroom, she had been incoherent and incontinent overnight, becoming increasingly restless and even a little belligerent, and he seemed at a loss how to begin to disturb her. I spoke quietly to her, explaining what we wanted to do in order to get her cleaned up; I could see just a flicker of understanding with a mumbled okay. We turned and washed the dying woman’s body, adjusting pillows and limbs and soothing her with quiet words, and just then her sister came back home. While I finished my careful check of signs that indicated she had only hours or perhaps a couple of days left in her struggle to leave this life, I heard her family in the hall whispering, “How did she know?” When I came out of the room, the sister said simply, “I have to hug you. You are like a genie, showing up just when we need you -Our own hospice genie- I believe it is the way things happen in life, and I’m just so thankful”.

The startling truth: I do this work to share these moments with family who are struggling to keep their loved one in their own home and provide a peaceful, loving environment. I did no great thing, I arrived and showed compassion, I knew the medicine that would alleviate some of her discomfort, I knew how to help turn someone in a bed when they cannot help themselves, I knew how to drizzle a little medicine into lips that could no longer purse together around a straw, I knew how to touch a hand and whisper comfort to a person who was not my loved one, but another struggling human being who, like us all, is having to come to terms with losing all her human abilities and becoming totally dependent on others at the end of her life.

Please, please, please… as we yearn to do more, and do better, for the suffering that we call dying…let us not lose the simple truth of caring for people as their life is ebbing. Buried beneath the latest research and experimental treatments lies a mere act of humanity: to be present and to care. As Mother Theresa said, “Not all of us can do great things, but we can do small things with great love”.

Photo by Joan Teno