A wise saying: There is nothing new under the sun. Suffering is our human condition; we all have some experience with it. Though it seems of late there is just too much. A recent visit to a nursing home reminded me of how much silent suffering exists in our world, especially among our most weak and vulnerable inhabitants. An elderly gentleman was labeled by staff as “resistant to care” for flailing his arms and pushing away caregivers in his final days of life. He lay in his bed, having lost the ability to talk in order to express his needs, or turn himself in bed to relieve the pressure on his bony prominences, or quench his thirst with small sips of fluids. Sadly, this is not an isolated situation in places where our vulnerable reside.
We still do not provide the kind of care most of us would like to have as we become increasingly dependent and eventually lay dying. COVID-19 has seemingly targeted the elderly, with nearly 40% of COVID-19 deaths being nursing home related. This current crisis has created extra burden in caregiving (and also innovative ways for delivery). The “essential” workers in these settings are true heroes dedicated to diminishing suffering while often working within a vast lack of resources. I have witnessed firsthand how difficult it is to properly staff these facilities. Though plenty of data is being collected, we actually don’t know how many people are dying without the level of care that was needed, without loved ones at their bedside, without facility staff who were adequately trained to alleviate pain and suffering.
Our elderly are again being short-changed and marginalized in a society that has a poor track record for providing the financial and societal supports that are necessary to ensure dignity and appropriate care towards the end of life. So when I read about another funded study—this one for 3.5 million dollars— to implement a palliative care program in a number of select nursing homes, I do wonder what it is that we still need to study? (A large number of previously performed research studies have indicated the benefits of palliative care, and the training inadequacies among those who care for elderly and seriously ill populations.) I should make the distinction here, regarding palliative care and not hospice care per se, because we are talking about care that lessons difficult symptoms and increases quality of life, not just end-of-life care. I’m happy for the palliative care focus, but perhaps Maslow’s hierarchy of needs warrants closer examination and provision of funding sources to ensure that needed care gets delivered? I believe in research, and in the societal change that comes from deeply understanding the issues and ensuring solutions are reality-based. We must begin by having adequate staff for meeting the basic needs of keeping residents clean and comfortable, having time to feed them, moisten their dry mouths, and ensure staff have adequate training to know, recognize and alleviate symptoms of distress.
I am indeed validated in my concerns, when I read another study (McGarry, Grabowski, & Barnett), indicating more than 20% of US nursing homes across the country have reported severe staffing and PPE shortages during this pandemic, (the most common staff shortages were reported among nurses and nurses’ aides). How do we provide this palliative care, when our nursing homes are plagued with staffing issues, with ongoing lack of trained staff who can provide it? A report from over a decade ago from the recognized leaders of palliative care in the US (CAPC-Center to Advance Palliative Care), recognized the need for, but also the limitations of, palliative care in nursing homes: “The tight financial constraints of nursing home management provide challenges for delivering palliative care. Many homes know what they need to do to improve the quality of life and care for their residents, but don’t have the necessary resources for service enhancement.” Additionally, this report outlines a number of models that are being used, and can be replicated, to ensure palliative care is provided to nursing home residents by partnering with outside agencies to deliver palliative care, and training of nursing home staff in the basics of palliative care delivery. Well over a decade later, there still has not been a standard federal response to the acknowledged needs of palliative care training and care delivery in nursing facilities. Now we see the devastation of COVID-19 amid our elderly. In August the CARES Act will finally distribute funding for nursing homes for improved access to PPE, infection control and testing, however much of the funds are connected to “performance-based distribution” to ensure federal government pays for “better outcomes” (I can’t begin to know how an equitable funding allotment will be assured).
So, we know it is needed, we know how to deliver it…WHAT’S THE HOLD-UP? How much is related to financial constraints that drive staffing metrics, along with profit margins (70% of nursing homes are for-profit institutions)? And limitations including the education and training opportunities for facility staff, with high rates of turnover for minimum wage jobs in these facilities? As a country, we have not deemed providing palliative care to every resident who needs it in a nursing home as a federal spending priority. I know (as so many of us do) the lack of practical caregiving resources available, even when COVID deaths occurring in nursing facilities didn’t highlight this lack or create an even greater need.
I just wonder…When will our country begin to spend the money necessary to provide the needed resources to right this wrong?
“Excellence is not a gift, but a skill that takes practice. We do not act ‘rightly’ because we are ‘excellent’, in fact we achieve ‘excellence’ by acting ‘rightly’”. Plato
UPLIFT trial National Institutes of Health’s National Institute on Aging, grant R01AG066922.
McGarry, B.E., Grabowski, D.C., & Barnett, M.L. (2020). Severe staffing and personal protective equipment shortages faced by nursing homes during the COVID-19 pandemic. Health Affairs, 39 (10),1-5
Nursing Home Data- retrieved from: https://data.cms.gov/stories/s/COVID-19-Nursing-Home-Data/bkwz-xpvg/
Center to Advance Palliative Care. (2007). Improving palliative care in nursing homes. New York: Meier, D.E. & Sieger, C.E.
CARES Act Funding- retrieved from: https://www.hhs.gov/about/news/2020/08/07/hhs-announces-allocations-of-cares-act-provider-relief-fund-for-nursing-homes.html