Part 5: I am a palliative care social worker who almost got stuck letting my own mother die in the hospital where she never wanted to be

This is the final part in a 5 part series  “I am a palliative care social worker….”

I am a palliative care social worker who believes intrinsically that there are things worse than death, who is rooted in the power of language, who provides care in acute settings and understands teaching hospitals, who has made a hundred referrals to hospice – and yet I almost got stuck letting my own mother die in the hospital where she never wanted to be.

Another irony is that we had an extremely positive experience. We were met with kindness, providers were authentic, we got to raid the family snack drawers and stay at her bedside 24 hours a day.

I also want to be clear: dying in the hospital is not wrong for everyone, but it would have been wrong for my mom.

I do not intend to point fingers at any one individual – I am devastated by the system. By the lack of education to support providers in how to navigate this, for starters. How dare we cite Medicare expenditures at end of life, shake our heads and say “they just don’t get it” about families, act surprised by goal-incongruent care when I – who have accidentally been training for this experience with my mom through ten years in this field – almost got stuck at so many different points? I also have an incredible family, I speak the language where this care was being provided, I am extremely privileged.

It’s true: I can’t say how else our story would have turned out; these were the twists and turns that became our unique experience of losing mom. But I can guarantee you it wouldn’t have included the hospice angel named James who gave me permission to spend Christmas morning with my young children two days before she died, and whose wisdom gave myself and my family the gift of holding mom’s hands as her faithful heart and lungs gently went silent.

Can we talk about this?

Part 3: I am a palliative care social worker who provides care in acute settings and understands teaching hospitals

After we opted against surgery, they very reasonably moved mom from the ICU to receive “comfort care” on a regular hospital floor. It was the morning after her stroke, although time no longer was the anchor from which we operated, and it was my shift to sit up with mom and listen for her gargling secretions.

Before I saw the five physicians shuffle quietly into the room at 5 a.m., I heard them methodically, one by one, reach for the hallway motion-detected sanitizer dispenser. “Squidge-squidge” five times, a somber knock, a silent parade. They asked two questions: “How does she seem to be doing?” and “so the plan is still to make her comfortable?” Even in the moment, the irony of a lights-up meeting before dawn to confirm comfort, while the rest of my exhausted family tried to sleep in the awkward positions unique to visitors, struck me. I really do get it. Many people understandably fear that opting for comfort equals being abandoned in a dark room at the end of the hallway.

Until that moment, I had bought into the story we had been sold: the nurse assigned to us for the next two days happened to come from a hospice background, and she had promised to keep mom comfortable in the hospital. She had suggested that we cancel the evaluation for inpatient hospice that I had begged my way into for later that day, Christmas Eve. I am a Good Girl and I am a people-pleaser, so I had actually considered canceling the evaluation. As I heard “squidge-squidge” five more times that morning as the physicians made their way out, I shook myself awake and said aloud, “what am I thinking?” I conferred in frantic whispers with a dear work colleague who worked miracles on our behalf to confirm my hopes that mom met inpatient hospice criteria, and I met with my family. I explained that our window to transport safely to hospice was closing, and that we could never be comfortable here.

We kept the evaluation, and by afternoon my mom was at an inpatient hospice where, although I am confident they uphold good hand-washing, there wasn’t one more “squidge-squidge.”

I am a palliative care social worker who provides care in acute settings and understands teaching hospitals, and yet I almost got stuck.

Part 4, next week … and also cross-posted on University of Colorado iPallCARE blog: cupallcare.org

Part 1: I am a palliative care social worker who believes intrinsically that there are things worse than death

My mom had a catastrophic stroke in December of 2017 – almost five years to the day after a more mild one – that ended her life at the age of 72. Following the craniotomy from her previous stroke, she drove again, lived independently, had no perceptible deficits. She went on to sail through treatment for an early stage breast cancer and three joint replacement surgeries. She had a tooth extracted and then regrown from a cadaver bone graft. She was determined. Any time you asked, her plan was to live to be 94 years old. She was in the now, and she was in the future. She would talk about plans for her body after death, but mostly due to legalities; her initial wish, which thankfully evolved over time, was for her bones to be placed in a cave to be picked apart by animals. Famously, when my mom was in labor with my sister, she did everything that a human could do to give birth at home; she didn’t trust medical settings. My mom was wise, connected to the earth, practical and everywhere. She would have loved to Know you.

In the twilight zone that took place after her devastating stroke, I stood next to my husband, talking with the neurosurgeon who had been there for the first stroke and who was miraculously on service this time as well. I still can’t believe the great fortune that we already knew this man; he has seen inside of my mom’s brain. I also count my blessings that his man who saved her life once was willing to put the worst possible choice in simple terms: he could attempt to surgically remove damaged tissue and blood which, due to the size of the stroke, would leave her non-verbal, non-ambulatory, unable to read or comprehend or interact with others – or she would die. I asked him more questions about what state she would be in, my sister asked by phone if she would even be able to see. I told him I was scared, that five years prior he had said surgery was the only way forward and that this time I didn’t hear him saying that. He looked down at his clasped hands. I know enough about surgeons to be terrified when they do not recommend surgery. He gently told us we had four hours to decide. I still have the surgery consent form tucked into a box of important papers. His half was signed, dated, time-stamped; he didn’t want to do the surgery, but he would have.

It took the synchronicity of connecting with my uncle and sister together on the phone, as they anxiously waited for their flights from California to Denver, to confirm what I knew in my marrow but that was lost in that ultimatum: my mom – who had over a thousand books and was a professional textbook editor throughout her adult life – would never want to live if she couldn’t make sense of the world around her. I admit that, had I not been able to get ahold of these family members that formed the decision-making triumvirate (and this was a real possibility, as my uncle was on the plane ignoring requests to turn off his cell phone for take-off) this story would likely have resulted in a doomed surgery. I am a palliative care social worker who believes intrinsically that there are things worse than death, and yet I almost got stuck.

Part 2 coming soon, and also cross-posted on University of Colorado iPallCARE blog: cupallcare.org