At the late October 2016 Avenidas Caregiver Conference, the keynote speaker was Lisa Krieger, reporter with the San Jose Mercury News. Her topic was the “Slow Medicine Movement.” The description was: “legislative and policy efforts to improve caregiving, palliative medicine, and our final years.”
Ms. Krieger authored a thought-provoking series in late 2012 on the “cost of dying” at the end of life in the SJMN. You can find a link to a BSN blog post about the series and Ms. Krieger’s eight “cures” to reduce suffering and the cost of dying here:
Brain Support Network volunteer Denise Dagan attended the Avenidas Caregiver Conference in late October 2016. Denise shared these notes from Ms. Krieger’s keynote address.
Notes from Denise:
Sadly, Ms. Krieger went through the care of her father without the information and assistance available at the kind of conference at which she was speaking. She recounted how she had no awareness of palliative or hospice care, advance directives or POLST forms. Nor did she realize the exorbitant cost of the treatment options the hospital was offering her dad. Treatments she knew were not the right choice for a man with dementia, but which doctors looked disappointed with her for rejecting. Only after she had sent them all away did someone suggest hospice, in the last few days of his life. But, it was the $323,000 bill for a 10-day hospital stay that really sent her over the edge. As a journalist, she felt she had to write about it.
In her initial research she was impressed with Dennis McCullough’s concept of slow medicine in his book, “My Mother, Your Mother: Embracing ‘Slow Medicine,’ the Compassionate Approach to Caring for Your Aging Loved Ones.” He found that seniors with access to intense medical intervention did no better than those without such resources because medical technology has, “blurred the line between saving a life and prolonging a death.”
“Slow Medicine,” he says, “is shaped by common sense and kindness, it advocates for careful anticipatory “attending” to an elder’s changing needs rather than waiting for crises that force acute medical interventions—thereby improving the quality of elders’ extended late lives without bankrupting their families financially or emotionally.” Essentially, he’s talking about palliative care and hospice services, advance directives and POLST forms — the very things Ms. Krieger didn’t know about during her caregiving journey. But, she’s telling us about them, now.
The second half of Ms. Krieger’s talk was about recent updates and expansions to family caregiving support both in California and nationally. Although she did not specify, she mentioned seeing recommendations to Congress from the National Academy of Sciences on the subject. Here are a few things she did specify.
Medicare finally reimburses doctors for a single care planning meeting with seriously ill patients and their families so doctors don’t lose out financially for taking the time to provide information about treatment options, possible outcomes, and answer questions. If there’s one thing Ms. Krieger wished she’d had, it was medical data on outcomes of the treatment options being offered her father. Today, that data is available but, excepting for this one billing-approved meeting, doctors are paid for each procedure or test, not talk or explanations. There is a bill being debated in congress to further expand Medicare’s coverage of the care planning process, but it needs support to get passed.
Recent changes to the California Care Act include provisions that require hospitals to identify a caregiver upon admission to whom the hospital may disclose medical information about the patient, and train in post-hospital care during the discharge process.
California recently increased its paid leave to 60% percent of a person’s salary (capped at $1,100 per week) starting in 2018, and created a new classification for low-income workers, who make about $20,000 or less, to receive 70% of their regular pay, so more people could afford take advantage of the benefit.
The California Task Force on Family Caregiving was recently established “to examine issues relative to the challenges faced by family caregivers and opportunities to improve caregiver support, review the current network and the services and supports available to caregivers, and make policy recommendations to the Legislature.”
The Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (S. 1719/H.R. 3099) would require the Secretary of Health and Human Services to develop, maintain and update an integrated national strategy to recognize and support family caregivers. This also needs support to get passed.
There is a movement afoot that started in 1994 proposing to change Social Security benefits to reflect child-care years out of the paid work force, that is now being expanded to include Social Security quarters credit for those who leave work to care for a family member in the case of long term illness. Unfortunately, this is still in conceptual stages.
Finally, there is a push to educate young people about the need for compassionate caregiving and to elevate the status and pay for caregivers so that young people are more likely to consider it as a career path. After all, the young people today will be our caregivers tomorrow.