A couple of weeks ago, The New York Times published a scathing article on how the pandemic was handled in Belgian nursing homes, focusing on instances where elderly were declined hospitalisation despite the fact that intensive care beds remained available. Refusing hospital care to nursing home residents was never the official policy, a fact also acknowledged by the NYT authors.
The Belgian Society for Gerontology and Geriatrics designed a flowchart early on in the pandemic to assist doctors in their decision-making process on whether or not to hospitalise a nursing home patient with a suspected Covid-19 infection. This flowchart was based on the Clinical Frailty Scale, advising to avoid admissions to the intensive care unit for residents with a Clinical Frailty score over seven. Despite these nuanced recommendations, hospitalisation was sometimes flat out refused based on age or residency in a nursing home.
As a GP in Belgium, I was a first-hand witness of the dramatic impact of the pandemic in nursing homes. Although the decision whether or not to send seriously ill residents to hospital was an extremely difficult one, I would argue it was not the main issue in nursing homes. By the time that decision was on the table, it was already too late. The lack in personal protective equipment and the consequent reuse of masks and gowns, long existing staff shortages and staff coming to work with symptoms, and the initial absence of a clear Covid-19 management plan for nursing homes, all of these factors contributed to the high mortality rate.
The vulnerability of the nursing home system to a contagious disease like Covid-19 was wildly underestimated. Since early on in the pandemic, retirement homes in several countries have been hit hard, leading to horrifying stories about abandoned care home residents and large outbreaks. Sweden’s success story of keeping the pandemic at bay without a strict lockdown was tainted by a high rate of nursing home fatalities. And even now, with infection numbers declining in many places, these residents bear the brunt of the pandemic by suffering social isolation and loneliness due to restrictions set on their freedom of movement and on family visits to minimise infection risks. Residents’ mental and psychological health as well as their general wellbeing risk serious harm from a prolonged period of isolation, and family members have protested the ongoing restrictions.
But can we blame it all on the pandemic? I believe the pandemic has, in a most painful but effective way, opened old wounds, or rather, fundamental questions about how we organise care for the elderly, and more broadly, how we look at ageing in society. Most Western countries rely on an institutionalised model of care for people who are no longer able to live independently due to declining physical and mental capacities. Over the past decades, this sector has seen an increase in privately-owned for-profit institutions. In the US, almost 70 percent of nursing homes have for-profit ownership, and the average home has 87 residents on a given day, too often leading to overcrowded and understaffed care homes.
While intensive effort is directed toward providing a safe environment, medical follow-up and nursing support, moving into such a care home often also means losing even more autonomy, freedom, and purpose in life. Atul Gawande, American surgeon and writer, has centred his analysis of nursing homes around precisely that question: how can we live meaningful lives in old age? How can we maintain the autonomy to be the authors of our lives despite an increasing dependence on others for everyday actions? He argues that large institutions have medicalised ageing, by focusing on health and safety and further confining residents’ choices, and as such have largely ignored the question how the elderly can still lead full lives. Ironically, these large institutions are at a higher risk of being affected by all sorts of pathogens.
Although a one-size-fits-all solution probably does not exist, many alternatives have already been developed which share some common principles. These ‘nursing houses’:
- Have smaller groups of people in units of maximum 10 to 12 people
- Replace hospital-like set-ups with environments that look and feel like a home
- Leave ownership and autonomy in the hands of the residents as much as possible
- Have care providers come into housing as “guests” instead of forcing residents to fit into managed schedules
- Listen to their residents and go to great lengths to help fulfill their purposes in life
So why are we still holding on to nursing home systems that fail to meet the fundamental needs of their residents? Among other reasons, it illustrates our struggle to come to terms with the processes of ageing and dying, both as individuals and as a society. Despite all of medicine’s achievements and technological advances, we still face declining health and the suffering, and frustration that may come with that, at some point in life. Have the elderly become nothing but a burden to the younger generation? This pandemic forces us to reconsider that question and our view on ageing.
The television series Star Trek Next Generation has grappled with this issue in a thought-provoking episode called “Half a life”. Here, the viewer encounters a people who voluntarily choose a ritual suicide at the age of 60 to prevent elderly from becoming a burden to their children and to society. In light of the pandemic, this episode leaves us with two questions. If we are appalled by such moral choice, should we not be able to define, identify and protect the value(s) of ageing? And second, are we so far removed from this sci-fi example, considering the recent controversial debate on whether grandparents would (or should) be willing to accept health risks if this means saving the economy, and their grandchildren?
It is clear that the pandemic urges us to rethink the ethics of ageing. I hope we have the courage to consider fundamental changes to a system that badly needs them.
This article, published here with permission, originally appeared as a blog in the Journal of Medical Ethics.