Like other families, my first real glimpse of home hospice care was when the team came to help my mom care for my dad the last 3 months of his life. I was not new to watching the dying process, though. At the time, I was a fledgling nurse working in critical care, seeing first hand the fierce effort to prevent the occurrence of death. Dad’s terminal diagnosis of two separate cancers, both colon and lung, had initially been treated with a brief run of chemotherapy, then the lung cancer was complicated by brain metastasis, which was treated with a number of radiation treatments that took the stuffing right out of him… until dad said “I’m done”. I spent a couple days each week to help care for dad, often overlapping with the hospice crew who would come and go, giving mom a much needed break. Though I knew death as the enemy in the hospital world, I had also been given opportunities to watch many families deliver a loving presence even if they were not the ones to do the turning, bathing and administration of medications. I had witnessed their presence, versus the many drugs we trialled, as the only antidote for an anxious and confused patient. I learned to value this presence—perhaps more than all the technology and medical treatment we could offer in the hospital—this gift of a loving family that soothed a suffering soul. The medicalisation of dying, so prevalent in intensive care, was not the only way for dying to occur. Hospice was delivering care to dying patients in a different way.
Over a decade following dad’s death, now as a hospice nurse, I was travelling that 1-5 corridor again, this time to help care for my mother. I’ve sat in many hospice team meetings, during times when the staff shudders and soft groans are audible, while discussing the patient who had “family issues”—surrounding the son or daughter who was a “medical professional” and being “difficult for staff to manage”. Now that issue was ME!
I probably drove mom’s hospice nurse crazy (though she never told me so). I didn’t hesitate to ask for things, and I wanted to know what else could be done for symptoms that were problematic. We all have our own perceptions and biases, which create assumptions that can interfere with new ways of doing things— but I think both mom’s nurse and myself learned together from a number of opportunities, and ultimately mom benefited.
I still hear hospice staff say, “she should just be the daughter, and let us be the caregivers” and I cringe, remembering well what I felt as both a daughter and a nurse who had end of life expertise, caring for my mother. One word sums it up: Advocacy. I knew how to do this for mom. Being a medical professional does not mean you are an expert in everything medical, and being a family member does not mean you have little to offer in terms of medical opinion. Regardless of what is understood, or lacking in experience—whether clever and knowledgeable, or barely confident and a mere novice…a family member is an advocate. The word Advocacy means to “summon, call to one’s aid…the act of supporting someone to make their voice heard”. This is what families can do for their loved ones.
It is what hospice care is all about.
Thank you for this excellent post. It reminded me of a time when I was filling out the admission paperwork for my dad as he entered a nursing home. His health was failing, and he was living with profound dementia.
As a former hospice nurse, I knew that the “no code” order was the right thing to do, and it was what my dad would have wanted. Yet, it was very difficult to put my signature on that piece of paper. I’m so very appreciative of the nursing home staff who supported me in being a daughter that day, instead of expecting me to be a nurse.
I took a leave of absence from my job as a hospice RN to take care of my mother. I was able to get her transferred home on hospice, give her medications and also provide some EOL teaching to her hired caregivers. Your definition of advocacy defined what I did. I was up front with hospice staff, so they knew I was a hospice RN. The only time I was told to be “the caregiver, not the nurse” was when the RN left a foley catheter at the house, just in case the on call RN needed it. I didn’t mind that instruction. (We never needed to use it.) Thanks for another great post.
My first experience with hospice was as the daughter, and I am a nurse as well. I was so impressed with the care my family received from the hospice that I also became a hospice nurse. Never have I had such a challenging job–hospice is not for wimps.
The death of my father brought me into hospice as well. I appreciated having that family perspective when working with other families as I wanted to give them that good death experience that hospice had given my family.