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.
When I open my eyes, I see the river flowing out to the sea, as it continues to do, day after day, regardless of what else the day brings with the sunrise. It brings a sense of permanence that steadies us in a world full of change and surprise. Some things seem to stay the same. Yet the river, as it meanders past me, has changed even in these few years I have known it. Creeping farther up the bank each year, it sweeps more of the trees and the silt with each winter rainstorm and ensuing floods. Some mornings the glassy calm is a soothing balm while other days the white caps remind me of the larger pounding waves the river hurries past me to join. The original inhabitants of the river speak of the changes: it no longer teems with fish and its shores are no longer held secure with giant Sitka spruce reaching across the watery expanse. The river has its losses, too.
It’s been nearly 30 years since the evening as a fairly new nurse I had been assigned to the oncology floor. I still remember my patient (a young woman in her mid thirties with advanced ovarian cancer) the mother of the two young boys who sat with her husband as they forlornly waited at her bedside, squeezing her pale hands while she lay gasping with heavy breaths, and no longer cognizant of the rest of us. The little boys kissed their mother goodbye and went home with their grandmother. This young mother had been hospitalized a few days prior to my shift while suffering a pain crisis, requiring significant medication adjustment to alleviate her suffering; it was obvious to the medical staff that she was coming to the end of her life. Now her family was understanding this as well and attending vigil at her bedside.
