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Susanne Gilliam, 67, was walking down her driveway to get the mail in January when she slipped and fell on a patch of black ice.<\/p>\n
Pain shot through her left knee and ankle. After summoning her husband on her phone, with difficulty she made it back to the house.<\/p>\n
And then began the run-around that so many people face when they interact with America\u2019s uncoordinated health care system.<\/p>\n
Gilliam\u2019s orthopedic surgeon, who managed previous difficulties with her left knee, saw her that afternoon but told her \u201cI don\u2019t do ankles.\u201d<\/p>\n
He referred her to an ankle specialist who ordered a new set of X-rays and an MRI. For convenience\u2019s sake, Gilliam asked to get the scans at a hospital near her home in Sudbury, Massachusetts. But the hospital didn\u2019t have the doctor\u2019s order when she called for an appointment. It came through only after several more calls.<\/p>\n
Coordinating the care she needs to recover, including physical therapy, became a part-time job for Gilliam. (Therapists work on only one body part per session, so she has needed separate visits for her knee and for her ankle several times a week.)<\/p>\n
\u201cThe burden of arranging everything I need \u2014 it\u2019s huge,\u201d Gilliam told me. \u201cIt leaves you with such a sense of mental and physical exhaustion.\u201d<\/p>\n
The toll the American health care system extracts is, in some respects, the price of extraordinary progress in medicine. But it\u2019s also evidence of the poor fit between older adults\u2019 capacities and the health care system\u2019s demands.<\/p>\n
\u201cThe good news is we know so much more and can do so much more for people with various conditions,\u201d said Thomas H. Lee, chief medical officer at Press Ganey, a consulting firm that tracks patients\u2019 experiences with health care. \u201cThe bad news is the system has gotten overwhelmingly complex.\u201d<\/p>\n
That complexity is compounded by the proliferation of guidelines for separate medical conditions, financial incentives that reward more medical care, and specialization among clinicians, said Ishani Ganguli, an associate professor of medicine at Harvard Medical School.<\/p>\n
\u201cIt\u2019s not uncommon for older patients to have three or more heart specialists who schedule regular appointments and tests,\u201d she said. If someone has multiple medical problems \u2014 say, heart disease, diabetes, and glaucoma \u2014 interactions with the health care system multiply.<\/p>\n
Ganguli is the author of a\u00a0new study<\/a>\u00a0showing that Medicare patients spend about three weeks a year having medical tests, visiting doctors, undergoing treatments or medical procedures, seeking care in emergency rooms, or spending time in the hospital or rehabilitation facilities. (The data is from 2019, before the covid pandemic disrupted care patterns. If any services were received, that counted as a day of health care contact.)<\/p>\n That study found that slightly more than 1 in 10 seniors, including those recovering from or managing serious illnesses, spent a much larger portion of their lives getting care \u2014 at least 50 days a year.<\/p>\n \u201cSome of this may be very beneficial and valuable for people, and some of it may be less essential,\u201d Ganguli said. \u201cWe don\u2019t talk enough about what we\u2019re asking older adults to do and whether that\u2019s realistic.\u201d<\/p>\n Victor Montori, a professor of medicine at the Mayo Clinic<\/a> in Rochester, Minnesota, has for many years raised an alarm about the \u201ctreatment burden\u201d that patients experience. In addition to time spent receiving health care, this burden includes arranging appointments, finding transportation to medical visits, getting and taking medications, communicating with insurance companies, paying medical bills, monitoring health at home, and following recommendations such as dietary changes.<\/p>\n Four years ago \u2014 in a paper titled \u201cIs My Patient Overwhelmed?<\/a>\u201d \u2014 Montori and several colleagues found that 40% of patients with chronic conditions such as asthma, diabetes, and neurological disorders \u201cconsidered their treatment burden unsustainable.\u201d<\/p>\n When this happens, people stop following medical advice and report having a poorer quality of life, the researchers found. Especially vulnerable are older adults with multiple medical conditions and low levels of education who are economically insecure and socially isolated.<\/p>\n Older patients\u2019 difficulties are compounded by medical practices\u2019 increased use of digital phone systems and electronic patient portals \u2014 both frustrating for many seniors to navigate \u2014 and the time pressures afflicting physicians. \u201cIt\u2019s harder and harder for patients to gain access to clinicians who can problem-solve with them and answer questions,\u201d Montori said.<\/p>\n Meanwhile, clinicians rarely ask patients about their capacity to perform the work they\u2019re being asked to do. \u201cWe often have little sense of the complexity of our patients\u2019 lives and even less insight into how the treatments we provide (to reach goal-directed guidelines) fit within the web of our patients\u2019 daily experiences,\u201d several physicians wrote in a\u00a02022 paper<\/a>\u00a0on reducing treatment burden.<\/p>\n