Editor’s Note: “Narrative Matters: On Our Reading List” is a monthly roundup where we share some of the most compelling health care narratives driving the news and conversation in recent weeks.
The One In 40,000
Parents think their children are one in a million, but Liz Savage knows what it means to have your child be the statistical anomaly. One in 40,000 measles, mumps, and rubella (MMR)-vaccinated patients will be affected with immune thrombocytopenia purpura.
Her son, whom she refers to as “Oscar” in her story for Slate, “My Son, the Statistic,” was hospitalized with low platelet counts, as his body adversely reacted to the immunization. Oscar recovered, and despite the stress of the ordeal, Savage says she’d still vaccinate him again.
“I had to weigh my fear of ITP [immune thrombocytopenia purpura] against a lifetime of worrying that he could contract measles anytime we went on vacation, to the park, or to the grocery store.”
The measles vaccine, she points out, has reduced the number of measles cases by 99 percent. “The anti-vaccine movement spreads a misguided belief that expertise is overrated,” she writes. “[Experts] aren’t perfect, and neither are vaccines. But together they are saving countless lives every day.”
Mental Illness, The Silent Killer
Doris A. Fuller didn’t see the symptoms of mental illness when her daughter Natalie was a junior in college. “I had no frame of reference to recognize them,” she writes in her essay for The Washington Post, “My Daughter, Who Lost Her Battle with Mental Illness, is Still the Bravest Person I Know.”
Onset of mental illness peaks between the ages of 18 and 25, but she attributed Natalie’s erratic behavior to jet lag and typical college drama. But after a diagnosis of severe bipolar disorder with psychosis, Natalie embarked on a six-year journey of treatment and, when she refused medication, relapse.
“Each time she … relapsed, she plunged into a longer free fall, hitting the ground harder, recovering more slowly and returning to a lower plateau,” Fuller wrote. Natalie ended her life in March, a few weeks before she would have turned 29.
Amidst her grief, Fuller was contacted by a postdoctoral fellow at Johns Hopkins, who wrote that: “Natalie will help our society to move forward. She is helping us to look at mental illness with the respect, the compassion and the dignity it deserves.”
Doctor, Motivate Thyself
Scott Berman doesn’t practice medicine anymore, but he misses it every day, even as he acknowledges there has been a shift in the ways physicians voice their dissatisfaction with the profession: griping versus whining. “Griping” he characterizes as voicing common complaints without any intention of quitting. “Whiners,” by contrast, are looking for a way out of their predicament.
In his essay “Gripers and Whiners” for the Journal of the American Medical Association, Berman recommends that doctors become stronger activists for patient care.
“It is time for us to stop whining that someone else, the hospital administrator, the insurance company, the nursing staff…is at fault. We need to find the fortitude to just say, ‘we’re mad as hell and we’re not going to take it anymore.’”
Berman includes his father’s story of staying overnight in a hospital holding unit without medications or food. The nursing shortage and the physician who “chewed out” the one available nurse were both complicit in bad care, Berman writes. Doctors need high moral standards, he concludes, and a willingness to go the distance for every patient.
The “Person” In “Personalized Medicine”
“No one paid much attention to her pain,” Jerald Winakur writes of a 91-year-old woman who fell in her garage, in his opinion piece in The Washington Post, “We Need To Take Better Care of Our Elderly.”
The woman, who is later revealed to be Winakur’s mother, triggered her emergency alarm necklace, and then spent the following days in the hospital, with a series of doctors and nurses rotating in and out of her room, as her sons stood by, encouraging her to eat.
“No one asked her about her advance directive,’” Winakur writes. “No one came to give the old woman a bed bath for more than a week. No one repositioned her. No one came in the middle of the night to put a hand on her forehead or to ask ‘Are you able to sleep?’”
The nurses said they had once performed such tasks, but no longer have time. Winakur, whose work has appeared in Narrative Matters previously, believes our entire health care system must change how it treats the elderly and redefine truly “personalized care” for patients.
“The skillful application of compassion and empathy it takes to do this work will—in the end—benefit us all,” Winakur concludes.
End-Of-Life Paperwork
Advance directives may not be sufficient for a patient to receive their specific health care requests when the time comes, Jessica Nutik Zitter writes in, “The Right Paperwork for Your End-of-Life Wishes,” published on The New York Times’ Opinionator blog.
Zitter recounts the story of a patient in the intensive care unit, hooked up to a ventilator as his daughters come running, waiving his advance directive in the air and insisting their father be taken off all machines.
‘“He made us promise,’” they said. Advance directives vary by state, however, and their purpose is “to chart the broad strokes, to delineate the guiding principles,” Zitter writes.
A better option for specific end-of-life requests is a Physician Orders for Life-Sustaining Treatment, or Polst form, which details specifications for the use of certain treatments, such as breathing machines, when full recovery is unlikely. After a conversation with the patient’s daughters, Zitter took the patient off the ventilator and sent him home on hospice, “to be with his family for the precious time he had left.”
Rehab Gone Awry
In a harrowing tale about the unregulated aspects of drug and alcohol rehabilitation units, John Hill tells the story of Ryan Rogers, a 28-year-old seeking treatment for alcoholism who died at the Bay Recovery treatment center. “The Rehab Racket: The Way We Treat Addiction is a Costly, Dangerous Mess,” in the May/June issue of Mother Jones, reveals that due to a lack of national standards, the state-by-state regulation of treatment facilities means that many places are in desperate need of oversight and lack evidence- or science-based approaches to treating patients.
Many patients seeking treatment cannot find availability or cannot afford the often-astronomical prices. Many health insurers do not cover the cost, though the author notes that the Affordable Care Act has started to change that. Bay Recovery’s executive director, Jerry Rand, had his medical license suspended several times and had been placed on probation for “gross negligence and incompetent treatment” of a patient, yet had been allowed to stay in business.
Rogers died in rehab from acute respiratory disease, likely linked to the combination of prescribed medications he had been taking. Bay Recovery was closed down, but without increased access and affordability of quality care centers, many addicts, like Rogers, will struggle to find a solution.
In Case You Missed It
In this month’s Narrative Matters’ essay, Patricia Gabow, a physician and former CEO of Denver Health, writes about her desire to deviate from standards of care to provide care better suited to her 94-year-old mother with dementia after she sustains a fall.
In “The Fall: Aligning The Best Care With Standards of Care At the End of Life,” Gabow finds that the standards of care she had spent so much of her career championing no longer seemed to fit the bill when it came to her mother’s wishes.
Gabow suggests that “we can better align the standards of care with the best care, especially at the end of life.”
SOURCE: Health Affairs Blog – Read entire story here.
