I’ve spent most of the past month dealing with my mother’s “condition.”
My mother, Evelyn Sims McNeil, hated euphemisms. So I should say that her condition was that she was dying. And die she did, on Nov. 13.
I held her medical power of attorney, which meant I made the decisions that she could no longer make, including how aggressive to be in treating her ills. In doing so, I learned important lessons about end-of-life care. My mother was a teacher, so in that spirit, I want to pass on what I learned, hoping it will be helpful to others who find themselves caring for someone who is approaching death.
The main lesson: Beware the emergency room.
Medical professionals and caregivers have a tendency to overuse emergency room services because of concerns about liability. In May, after attending my grandson’s high school graduation, I came home to find a phone message saying that my mother had fallen and had been transported from the group home where she lived to an emergency room.
I rushed to the emergency room, where she was initially glad to see me—but then decided that the doctor, the nurse and I were “rats.” My mother, a few months short of her 96th birthday, had recently been diagnosed with dementia and was suffering from worsening paranoid delusions. Though she was moving around the emergency room forcefully enough to make it clear that she did not have any broken bones, the staff insisted on pelvic x-rays. At that point her delusions took full control, and I had to struggle, while she tried to hurt me, to keep her from throwing herself off the x-ray table.
Misadventures at the emergency room
Later that summer, my sister J.E. McNeil and I tried to have our mother admitted to the psychiatric ward at a local hospital until her medication for the dementia could be adjusted. Despite daylong efforts by us and her psychiatrist to reach the doctor in charge of admissions, we ultimately failed. She was admitted only after being taken to the emergency room, which prolonged the stressful and difficult situation by several hours.
She went from that hospital to a facility that specializes in care for patients with dementia. After she achieved some equilibrium from medication, she returned to the group home.
In September, I returned home on a Friday evening to find another phone message, saying that my mother was going to be taken to an emergency room because the nurse at the group home was worried that a bedsore on her back might turn fatally septic. I argued against it, but the ambulance was already there. I met her at the emergency room, where the doctor and nurse looked at the wound, pronounced it healing and said she didn’t need to be there. Three hours later, after waiting until an ambulance was available, she returned to the group home, lying on her back on a gurney for the bumpy ride back.
In October, my mother’s doctor and the nurse at the group home recommended that she be seen by the Wound Care Center at Shady Grove Adventist Hospital in Maryland. They said that she would have to be admitted through the emergency room.
By then, I had grown wiser. I didn’t take their word for it. I called the Wound Care Center and asked how I could get an appointment for my mother. The next day she traveled to the center not in an ambulance, but in a taxi equipped to carry wheelchairs, and was seen immediately when she arrived.
That same day, the New York Times ran an excellent article headlined “Treating Dementia, but Overlooking Its Physical Toll.” It noted that dementia is not just a disease of the mind, but “a physical illness, too—a progressive, terminal disease that shuts down the body as it attacks the brain.” Because that isn’t well understood, it said, patients are often subjected to aggressive treatment and preventive care that would not be used on patients with another terminal illness. “Simply transferring a dementia patient from the nursing home to a hospital can lead to confusion, falls or a decline in eating—which in turn, often leads to further aggressive treatment,” the article said.
Another lesson from the experience: Beware unnecessary tests.
I should have followed my instincts and declined the pelvic x-ray when my mother was admitted to the emergency room in May. Later, when she was admitted to the hospital psychiatric ward, the emergency room first gave her a CT scan. A few days later a nurse in the psych ward mentioned that the neurologist wanted my mother to have a CT scan. I asked whether the neurologist had looked at the one from the emergency room. Later the nurse came back. “Never mind,” she said.
And a final lesson: Turn to hospice care sooner, rather than later.
Whenever my mother was examined until the day before she died, her vital signs were always good. Good heart rate, good pulse, good circulation, good blood pressure. I would say, “Yes, she’s in great shape except for this dying thing.”
I knew a fair amount about hospice care and didn’t need to be told that it wasn’t signing a death warrant, and that people were not kicked out of hospice care in six months if they were still alive.
But I wish I had understood more clearly that my mother would receive better care in a hospice and that she could qualify without having a specific illness that was clearly killing her, such as cancer.
The Jewish Social Service Agency Hospice came to us. She was admitted with a diagnosis of “debility,” a weakened or enfeebled state. They immediately took charge, treating her with dignity and as an individual. They moved aggressively to eliminate her pain and discomfort, and cut back on multiple daily dressing changes that were good for her wound but not for her. And I could spend my last days with her talking to her and stroking her hair, rather than fighting off trips to the emergency room and other aggressive treatment.
Martha M. Hamilton writes a regular column for Bulletin Today on retirement and financial issues.