Health Literacy, which is as much about common sense as about the three R’s, can nevertheless be a matter of life and death. Rebecca Sudore M.D. covered the issue in a recent talk to a group of healthcare professionals and volunteers in which she included video clips and verbal summaries of cases that bring chills: a woman who didn’t know she was having a hysterectomy until after the fact because she was afraid to ask questions, people who suffered or died simply because they could not read the details about medications or procedures. Health Literacy may be a field still in its infancy but it is a topic, as well as a separate professional discipline, for which the time has come.
Dr. Sudore, whose youthful energy and unassuming demeanor belie an impressive list of credentials in geriatric scholarship and practice, is passionate about the subject. Among the messages she shared, here are just a few:
Health Literacy is defined as “the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions.” In other words, if you’re sick or wounded, it’s a pretty good idea to understand what should or should not be done to you – and literally millions of Americans do not.
Millions? Really? Yep, between 40 and 44 million of us are somewhere around a fourth-grade learning level, cannot read signs or medication bottles, poison warnings or the schedules of city buses. Try to imagine making it through the day, if you were in this group, with a bad cold or an infected finger. Another 50 million or so of us are hanging around 4th to 8th grade level, which means we have trouble with “executive functions” such as simple forms or reading a magazine. I hold an advance degree, and don’t even get me started on the difficulty-with-forms issue. If that form, though, means whether or not you agree to a hysterectomy it’s a lot more serious than exchanging data or filing your taxes. Healthcare workers, and sometimes family and friends, must pick up where education or language skills leave off.
Patients, Dr. Sudore explains, are critically hampered not only by lack of education and skills but by shame, fear and a host of other issues. Doctors, often part of the problem, are hampered by lack of time and health-literacy training, and other issues of their own.
Dr. Sudore and her fellow crusaders are out to change all that. They preach keeping messages simple, using plain language, an “Ask-Tell-Ask” method of communicating. Dr. Sudore was pleased, recently, to encounter a physician who caught himself hurriedly saying “Any questions?” to a patient and then corrected the phrase as she had told him, “What are your questions?”
It may be a way off, but Health Literacy is gaining ground.
But I missed his funeral. He knew this in advance. I had moved to San Francisco toward the end of Uncle Porter’s life, a long way from his home in Virginia Beach but really not a difficult trip in those pre-9/11 days of air travel. Uncle Porter had escaped one brush with death a few years earlier – he was a heavy smoker for many long years – but had reached a point at which his lungs and his life were fast coming to an end. My sisters and I, along with other family members, were talking about making arrangements for the funeral, which seemed likely to be soon.
I had always loved talking with Porter across the miles, but the conversations of late had been brief because his lungs wouldn’t allow many words. After one such conversation, as I hung up the phone my husband said, quietly but reasonably, “Why are you waiting for his funeral?”
I picked up the phone and called him back.
“Uncle Porter,” I said, “I’m not coming to your funeral. I’m catching a plane this weekend instead, if that’s okay with you.” The old, familiar cackle responded. “We’re not going anywhere,” he said. “It’d be good to see you.”
A few days later I was on a plane to Richmond. I picked up a car for the short drive to the retirement home Porter and his wife, my lovely Aunt Lynn, called home in their late years. The waters of the Chesapeake Bay, where Uncle Porter taught be how to pick up softshell crabs at ebb tide, and the flat countryside once the site of the nearby family farm where he taught me to milk a cow, are nearby.
We spent a memorable hour, that afternoon, sharing family stories with all the breath he could muster. That night we had dinner in his room, cut short because his energy was gone, but the next morning he was well enough to join Aunt Lynn and me in the dining room. I would not take all the gold in California for those moments.
Two weeks later my husband and I were having breakfast at a London hotel, where we were staying during a long-planned visit. In the International Herald Tribune we read of Uncle Porter’s memorial service in Virginia, attended by fellow farmers and fellow dignitaries, along with a host of friends and all of my family. True to my word I had missed the funeral. But I had lived something better that I would wish for everyone: a goodbye hug and some cherished memories . I look at the picture on my refrigerator, and can imagine Uncle Porter chuckling over the joyful time we snatched from the jaws of death.
When my daughter Pam was 17, she had a group of incandescent friends – Julie, Catherine, Kim, Martha, Polly and others – who lit the spaces of our lives. They went on to college, jobs, marriages and adventures, lost track of each other at times and got back together at high school reunions. They encountered heartaches and obstacles, found success and contentment and joy.
A few weeks ago, Kim’s daughter Ally, who was born within several months of my own beloved first granddaughter, died in an auto wreck. She was 17. Ally was, according to all reports from her grief-stricken friends, one of those incandescent teenagers herself, a pretty, outgoing, church-going, clean-living young woman of limitless promise. It is an unfathomable sorrow. Akin to the ache that envelops the room as those photos of smiling young service men and women roll silently across the NewsHour screen every Friday, with only their names, ages and hometowns suggesting the overwhelming sadness that their loss now creates.
When Pam and Kim and the others were about 17, their friend Mark was killed in a motorcycle accident. The only son of a very dear friend of mine, I remember Mark as filled with a more macho but equally vibrant incandescence; his loss remains, especially for his family and for those contemporary friends, a giant sorrow.
Here, though, is what sorrow does. It unites. It makes humanity understandable, it makes gentleness essential. Why would anyone who knew Ally or Mark ever want to be unkind? How could any of us fail to cherish the people we see and the day we greet?
It does nothing to lessen the loss. But whether we knew them or not, this is a parting gift from Ally and Mark.
Stuff matters not. Friends matter. I had that old truism abundantly reinforced in the past several weeks… when I’ve been blogging only in my head. That’s my excuse for this stale blogspace, and hopefully it merits putting down in black, white and cyberspace. I made the leap into a new – gasp – quarter century on June 8, with the help of something over 100 friends in the Bay area and warm wishes from absentee friends elsewhere, something worth celebrating indeed. All were invited not to bring Stuff, but to bring, if they chose, contributions in amounts of 75 cents, $7.50, or multiples that seemed interesting to my three favorite causes. We raised a bunch of dollars; the hostess had a ball. Shortly thereafter I hopped a $99-one-way flight from San Francisco to Baltimore, because who can refuse a $99 cross country flight, even if it’s not going exactly where you want to go? I had not bothered to fill in the blanks until almost the moment of departure, but it worked out this way: An old college friend arranged for her housekeeper to fetch me from B.W.I. to her home in McLean, VA; then delivered me the next day to the Corcoran museum where another friend is curator of American Paintings. That afternoon a childhood friend fetched me from the Corcoran, sated with beautiful art, and took me to her home in Alexandria. Two days (and more art, see Ann McDowell at the Torpedo Factory Art Center) later she and I drove 90 miles south to our hometown of Ashland, VA for a reunion of the famous Ashland High classes of ’47, ’48, and ’49. (We are a sturdy bunch of Depression-era-raised farm kids and small-townies.) Another childhood friend that night nursed me through the cold and laryngitis all this had produced. The next day my second-grade boyfriend fetched me from Ashland to the Richmond airport, where the Alamo people kindly offered a car for return to B.W.I. without charging an arm and a leg. Two days later, nourished by visits to more old friends, a fetched myself back to B.W.I., onto Southwest’s pleasant airplane and home. Exhausted, but exhilarated, because friends just do that, and thank heavens for them all.