My mother-in-law, Marilyn, was at the end of her life in mid-December. Nurses at Pepin Heart Institute in Tampa, Florida, told us it was time for hospice. My sister-in-law Susan met with Amy, a Palliative Care nurse at Pepin, who set up a meeting with a social worker from Gulfside Hospice. As Marilyn’s full-time caregiver for the last eight years, Susan wanted a facility close to her home, so she could spend as much time as possible with her mom. Rucki House, a Gulfside care center in Zephyrhills for people actively dying, was one option.
Tuesday, December 21, 2021
Susan was juggling a lot and was slightly confused after she talked with J. “Shannon” Figley, the Patient Care Ambassador/Social Worker from Gulfside Hospice.
I called Shannon myself and explained that Susan had spoken to her earlier that day.
Shannon took a deep breath. She explained that she would be at Pepin the next day to evaluate Marilyn. Then they would probably move Marilyn to a rehab center where physical therapists would work with her for a possible transfer to a long-term care facility.
Now it was my turn to take a breath.
“Marilyn isn’t a candidate for a long-term care facility,” I said.
“Well, we’ll see about that,” Shannon said. “Susan said she could no longer provide care at home.”
“Marilyn is ready for Rucki House. She needs to be with people who understand the dying process and can help her transition peacefully.”
“I have to see if that’s true. Either way, she can start off with hospice in a rehab center to work on strengths first.”
“What strengths?” I asked.
“The ability to stand and pivot,” Shannon said.
Stand and pivot?
Marilyn needed help to adjust herself in bed. She couldn’t stand, much less pivot.
“Ohhhhh, no wonder Susan was confused,” I said. “I’m sorry for any miscommunication. My mother-in-law is at end-of-life.”
“Ohhhhh, I think you’re confused,” Shannon snapped. “We don’t put people to sleep at Hospice.”
I blinked a few times and stared at the phone.
“I’m aware of what hospice does,” I said softly.
Maybe, like so many in health care right now, Shannon was stressed and overworked.
“I’m a longtime volunteer with both Seasons and LifePath hospice providers in this area,” I said kindly. “I’m also an end-of-life doula. I understand you need to personally evaluate Marilyn. But let’s go with the assumption that I’m telling you the truth. What is the process from there?”
“Who are you again?” Shannon asked.
She took my name and said she’d get back to me. I never heard from her again.
Wednesday, December 22, 2021
Shannon stopped by Pepin and learned the following:
- Marilyn was 89 years old with 90% of her heart blocked at the arteries.
- She also had pneumonia and was on oxygen.
- Marilyn was not a candidate for heart surgery.
- She could not get out of bed or walk unaided.
- Her organs were failing.
- Several doctors and physical therapists confirmed that she was at end-of-life.
Marilyn also explained that she had stopped eating and wanted to be left alone.
Shannon, a social worker, insisted that Marilyn wasn’t dying. Therefore, she’d make arrangements to transfer her to a rehab center rather than Rucki House.
Is that the process now? I wondered. Do rehab centers pay lobbyists to ensure they’re stop number one for patients and, of course, funding? No matter what a patient truly needs?
Shannon’s boss even called Susan around this time to ask if Marilyn had any funds to pay for a rehab center. This felt highly inappropriate.
Shannon insisted there was no other way. Susan asked for time to talk to her family and Amy, the Palliative Care nurse. She also spoke to several hospice volunteers in search of another option.
Meanwhile, my husband Marc called LifePath Hospice. Their Melech House was not as close as Rucki House but perhaps they’d be more helpful.
If Gulfside Hospice was our only option, we would go with it. But a rehab or hospital setting, where no one is truly equipped or trained to help people die peaceful deaths, seemed like awful options.
We had to wait and see.
Thursday, December 23, 2021
A nurse from LifePath Hospice arrived at Marilyn’s bedside and essentially rescued her.
The nurse could immediately tell that Marilyn was actively dying. We didn’t need to convince her. She told Pepin nurses to stop drawing blood and remove uncomfortable IVs pumping her with the medicine she didn’t need. The LifePath nurse also got Marilyn started on Ativan, to help with near-death anxiety.
Then LifePath assured us that they would transfer her to Melech House the next day. Marilyn would get the comfort care she deserved, and family members could sit with her around the clock. While we made plans to transfer Marilyn, calling family members and coordinating visits with grandchildren to say goodbye – Shannon from Gulfside continued texting and calling, even when Susan told her we were going in a different direction. She refused to take no for an answer.
Friday, December 24, 2021
Shannon came into Marilyn’s hospital room at Pepin uninvited. They dimmed the lights as Marilyn slept. Shannon began to loudly berate Susan.
“I’m completely put off by you,” Shannon said. “You’re not going with Gulfside? You’re going with LifePath? How can that be?”
Marilyn stirred, agitated by the disruption.
Marc slowly rose from his chair. Keeping one eye on his mom, he told Shannon, “This isn’t okay. My mom is trying to rest. Please leave.”
Shannon continued to yell at Susan. She claimed Susan gave Gulfside permission to transfer Marilyn. This never occurred.
Marc stepped in between the two of them and spoke sternly. He told her to leave – again. Finally, Shannon left. Marc got a call from LifePath and stepped out into the hallway to take it.
Shannon, at the nurse’s station, yelled, “There’s the guy I was telling you about. Mr. Robinson, you are a rude man!”
Marc stared at her for a moment and said, “Are you seriously yelling at me right now?” He took another step toward her. “Should I be more concerned with you rather than my dying mother?”
Shannon called security.
Unfortunately, this happens. Unscrupulous businesses and organizations aim to take advantage of people at one of the most vulnerable moments of their lives.
Families don’t want to spend hours “shopping around” when a loved one is dying. Rather, they want to take care of the business end of things quickly. The death industry knows this. Too many of them bully, price gouge, and pile on the pressure.
Families rightfully push back, ask about options, or object out loud and Hospice tells them they’re too sensitive. Gulfside Hospice ignored and labeled their concerns “emotional.”
Security guards arrived when Marc returned to his mother’s room. They saw a quiet, peaceful atmosphere. Two adult children caring for their mother. They realized they’d been called in error.
LifePath Hospice transferred Marilyn to Melech House at 2 pm.
Saturday, December 25, 2021
Marilyn died peacefully at 3:15 am.
I can’t help but wonder how many other times Shannon, and her boss at Gulfside Hospice, got it wrong. How many other families suffer because of a protocol to place patients, whether they need it or not, in a rehab center first? Do they force all dying patients to stand and pivot?
We are forever grateful to LifePath Hospice for treating Marilyn as more than just a funding source.
In less than 14 hours, the Melech House team provided a peaceful room with caring professionals who explained the dying process to Marilyn’s children. They showed compassion to a grieving family. Thank you LifePath Hospice for allowing my loved ones to watch vigil over their mother during this sad and sacred time.