Sen. Ted Kennedy (D-Mass.) has spent much of his political career fighting for equal access to quality healthcare for all Americans. Even while currently undergoing treatment for a brain tumor in Boston, Kennedy continues to push for national healthcare legislation. But healthcare isn’t equal until everyone receives the same level of care and compassion, whether the person is a prominent politician or your average grandmother.
This became personal for me when my 79-year-old mother, Mary, had a seizure on May 7. Grammy D, as our family affectionately called her, was subsequently diagnosed with a brain tumor by physicians at a prominent Boston hospital considered one of the finest healthcare institutions in the country.
A week later, Kennedy, 76, suffered a seizure. He too was diagnosed with a brain tumor at a prestigious Boston hospital. My mother received excellent medical and physical nursing care in the hospital. But she and my family received little empathy and compassion and very few, if any, answers to our questions from the nursing staff. Our anxiety was heightened because the initial seizure had robbed my loquacious mother of her speech.
I kept denying the brusque approach of her nurses until one young nurse yelled at my mother like a child when she tried to get out of bed because she had to go the bathroom. At the time, my mother was capable of walking to the bathroom with help.
During this same period, news spread about Kennedy’s condition. Feeling a kinship because of our family’s similar situations, I watched as TV anchors described the personal treatment the esteemed senator received.
On the day my mother was scheduled for a biopsy of her tumor, confusion reigned as we tried to learn where she was. No one bothered to tell us we could wait in the family area for regular updates. Eventually, we stumbled upon it by accident. Then the surgeon didn’t speak to us after the biopsy, despite our request.
Communication only deteriorated after that. In fact, my mother was unexpectedly discharged without advance warning a few days later. Kennedy also had a biopsy during this time, and as I watched the news I knew his family would have no difficulties getting the surgeon to speak to them. When my mother was transferred to the rehab hospital, the healthcare staff didn’t know what was wrong with her or why she was there. We wondered about the sutures in her scalp and the results of the biopsy because we were given no discharge instructions. Neither the rehab team nor her primary care physician could tell us where to get the results. Yet the entire country knew when Kennedy had received his biopsy results.
Fed up, I called the patient liaison office at my mother’s hospital. I informed the liaison that I am an RN and also a writer and editor. Only then did I receive a call from the surgeon’s nurse with the news that my mother had a Grade IV glioblastoma. Until then, the care coordinator, the neurosurgery department, and the neurology department had all let my mother’s discharge planning fall through the cracks.
I also called the rehab hospital and again explained my background and my family’s disappointment with communication regarding her care. The hospital quickly scheduled a meeting so we could talk about my mother’s treatment plan.
Almost three weeks after my mother’s initial seizure, my family belatedly sat down with her neurosurgeon. He told us that my mother’s tumor was so advanced that radiation or chemotherapy offered scant hope at her age. He patiently answered our questions but never apologized for the lack of follow-up.
Kennedy’s biopsy revealed he had a glioblastoma as well. The best specialists in the country flew to Boston to help Kennedy and his wife evaluate treatment options. Their hospitals were in the same city, but the Senator and Grammy D may just as well have been in two different worlds.
My mother died in a nursing home almost seven weeks after her initial diagnosis. In the end, the most compassionate care she and my family received throughout the entire ordeal came not from the nationally renowned hospital’s staff, but from the community nursing home’s nurses and aides during my mother’s last days.
Kennedy continues to fight for equal access to quality healthcare. He gave a valiant speech at the Democratic National Convention that touched on his hope “that we will guarantee that every American will have decent, quality, affordable healthcare as a fundamental right and not a privilege.”
It is not enough that we strive for healthcare that is affordable. As Sen. Kennedy said, it also has to be decent. That must be a fundamental right. Decency is something nurses can take the lead in providing to patients and their families — whether the patient is a prominent politician, an average grandmother coming in through the ED, or a homeless patient off the streets.