“Dr. Dale, I read an article you wrote,” he said.
I was taken aback. A long-standing, favorite patient of mine, an older African American man from Chicago’s south side with HIV and prostate cancer, was claiming to have found the time and inclination to dig up, and read, one of my papers? Really? Why?
The author with a young oak tree he planted in his father’s memory.
“Are you sure? What was it about?” I asked, trying not to sound skeptical.
Janice Lynch Schuster works with Joanne Lynn, a geriatrician and friend of the Hartford Foundation, at the Center for Eldercare and Advanced Illness at the Altarum Institute, a new voice in the field of aging and end of life issues. Learn more about the Center’s work at www.medicaring.org, or follow them on Twitter @medicaring. Health AGEnda is delighted that Janice answered our call for guest posts in last week’s blog.
When I was a little girl, country singer Glen Campbell had a variety show on television called “The Glen Campbell Good Time Hour.” As I remember it, it was a good time; in my young imagination, I often confused him with my father, who I thought was just as handsome and talented and fun as Glen. I loved his songs and wanted to learn to play guitar so I could be more like him.
Sadly, Mr. Campbell has been diagnosed with Alzheimer’ disease. As most people know, Alzheimer’s is the primary cause of dementia, a gradual loss of brain function that becomes more common as we age. As the disease slowly and insidiously strips us of our thoughts and memories, it strips us of our lives and torments our loved ones in a grim process that can take years to unfold. Mr. Campbell’s decision to put a face on this awful disease by continuing to tour is a mark of real courage and heart. I don’t know how long he’ll last on the road—and early reviews, pre-diagnosis, panned him for being so forgetful and bumbling—but I hope that road takes him into some kind of good night, Rhinestone Cowboy.
For those of you who haven’t yet heard, I have recently been diagnosed with Stage IV inflammatory breast cancer. This rare form of breast cancer is known for its rapid spread. True to form, it has metastasized to my spine. This means my time is limited. As a nurse, I knew it from the moment I saw a reddened spot on my breast and recognized it for what it was.
My recent journey through the health care system has been eye-opening. In only a few months, I have witnessed the remarkable capabilities and the stunning shortcomings of our health care system firsthand. I am writing here because in the time I have left, I hope my story and my journey can help illustrate why some of the reforms that my colleagues and I at the John A. Hartford Foundation, as well as many others, have championed are so important.
Photo courtesy of the Campaign for Better Care
On July 28, I attended a special forum, hosted by the Campaign for Better Care, called Building Better Care: Improving the System for Delivering Health Care to Older Adults and Their Families. It took place at the National Press Club, in Washington, DC, and was also accessible via Webcast. The forum offered an excellent lineup of speakers, including several from the Hartford family. In the keynote address, Senator Sheldon Whitehouse (RI) spoke eloquently and informatively about the new Patient Protection and Affordable Care Act and stressed the need to establish benchmarks for cost savings.
Gail Sheehy, author of the new book Passages in Caregiving, spoke about her own caregiving experience and moderated a panel of caregivers and patients. Each person recalled how their opinions and abilities were ignored in their own treatment or a family member’s. Some of the horror stories they told, unfortunately, were not at all surprising to those of us who have worked in hospitals and nursing homes.
Older Americans are not getting very good quality health care, as findings from many studies and experts show. However, most older adults and their caregivers don’t realize that they are getting substandard care. Given that most people are unfamiliar with the various guidelines for the treatment of chronic conditions and geriatric syndromes (e.g., falls, dementia, incontinence), it is probably unreasonable to think that they will ever be able to judge if their care is meeting evidence-based standards. People tend to mistake easy access to interventions (and particularly specialist physicians) for quality.
When family caregivers need to take on a substantial share of care for their loved ones, the many deficiencies in our system become very apparent to all concerned. This reality is poignantly captured in a first-person story in the April 2010 Atlantic Monthly, “Letting Go of My Father,” by Jonathan Rauch.
As Mr. Rauch struggles with caring for his father in his last year, he identifies many of the issues caregivers face. He writes, “My professional work all but stopped. Finding doctors for him and getting him to appointments and coordinating escalating medical needs swallowed entire days.” As a caregiver he struggles with not only his father’s care needs, and the weaknesses of the care system, but his own lack of preparation for the caregiver role. He writes “The medical infrastructure for elder care is good, very good. But the cultural infrastructure is all but nonexistent. How can it be that so many people like me are so completely unprepared for what is, after all, one of life’s near certainties?”