“I never want to end up in a nursing home” is the most distressing phrase that I encounter in my work as an expert in ageing.
In other areas of healthcare we have an aspiration that any illness or disability we acquire will be treated in a way that allows us to flourish to the greatest extent possible. Yet despite the many positives of ageing into later life, the welcome increases in healthy life expectancy and greater availability of home support, there comes a point where the complexity of illness and disability will be such that living in a congregated setting will be required for a significant minority of us as we age.
Yet if we turn our heads away from this possibility, we create a policy void and even negativity towards nursing home care that eventually finds its way into political, societal and even professional neglect. A shocking example was provided by a previous ombudsman when he decried the position of younger people in nursing homes leading “wasted lives” with a lack of dignified treatment, self-determination and independence, but made no reference whatsoever that these deficits also applied to more than 20,000 older residents in nursing homes.
The minimum space for a resident’s room under the national nursing home standards is smaller than the minimum size of a parking space mandated by Dublin City Council
This neglect is mirrored in a lack of proactive policy on nursing homes by the Department of Health whereby wholescale privatisation of the sector has taken place without debate or consideration of how this affects care provision, no indication of a vision of high-quality service by the commissioning body (the National Treatment Purchase Fund), low prioritisation of engaging in nursing homes by healthcare professional bodies, poor linkage with public health and secondary care services, and over-reliance on a reactive regulatory system that cannot on its own remedy the broader absence of a pro-active framework prioritising flourishing and independence.
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Regulation on its own will never be enough, with the minimum becoming the maximum in the absence of other inputs such as popular will or virtuous thought. For example, the minimum space for a resident’s room under the national nursing home standards is smaller than the minimum size of a parking space mandated by Dublin City Council – how can we expect to fit an armchair and some beloved furniture and belongings into such a small space?
This reflects international concerns, with a recent book, Les Fossoyeurs (The Gravediggers) making waves in the last French presidential election through its detailing of allegations of poor care in French nursing homes run by Orpea, a major commercial nursing home provider.
The standards we expect in hotels and restaurants in terms of decor, service and satisfaction arise not only because of the regulation that is in place but because we have generated an expectation of how they should be. It is time that we begin to start identifying with nursing home care as being a significant possibility in our own futures, and create a vision of how it might be.
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There is some urgency to this – Ireland performed overall relatively well for the Covid pandemic, but had among the worst death rates among nursing home residents in Europe. While the ministerial panel on nursing homes was an important interim solution, it is deeply troubling that implementation of its recommendations have fallen well behind the proposed timelines with an alarming lack of political, popular or media concern, and the implementation panel ceased in June with virtually all targets of substance unachieved.
If deaths had occurred to this extent in children’s homes there would be an outcry and almost certainly a public inquiry. Having undertaken the review of the Leas Cross scandal in 2005, I have written to both the past and preceding ministers for health and justice that just such a review should take place, and a public inquiry is needed to radically review how our future care and living arrangements are provided, as well as providing a statutory framework for delivery of high-quality healthcare.
The next time you say or think, or hear someone say, ‘I’d hate to end up in a nursing home’, consider an alternative version
Rethinking the design and design policy of nursing homes should be an immediate start, and our research group in Trinity Haus in TCD has formulated guidelines on how we move forward. Rather than large units with more than 200 beds sited distant from neighbourhoods, we need to look at relatively small units embedded in localities near people’s homes, designed in the form of small sub-units with a domestic scale and feel, including kitchen, sittingrooms and private spaces. Individual rooms should have space for personal effects and furniture. This model, known under names such as the “Green House” or the Teaghlach model, has been shown to be more effective in terms of protection during pandemics, as well as promoting a better quality of life.
It is clear that there needs to be a radical increase in HSE and voluntary provision of nursing home care to achieve this type of more sophisticated care setting, the sort that we would wish to be in.
So, the next time you say or think, or hear someone say, “I’d hate to end up in a nursing home”, consider an alternative version. “As I have a significant likelihood of requiring nursing home care in my future, I want it to be a supportive, liberating environment in a domestically-scaled and local setting which will allow me to flourish to the greatest extent possible.” We must all make this change of mindset to translate this impulse to a better present and future for all.
Prof Desmond O’Neill is a consultant geriatrician at Tallaght University Hospital and undertook the review of Leas Cross nursing home in 2005