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The Covid-19 Nursing Homes Expert Panel report, released last week and titled “Examination of measures to 2021”, is evidence-based, clinical and technical. It tells the bleak and tragic story of how, by mid-July 2020, 1,748 Irish lives were lost to Covid-19 and more than half of those who died (56 per cent) were frail elderly men and women, resident in Irish nursing homes.
The report is written by a public health expert, a retired hospital geriatrician, a former director of nursing and a retired hospital advocate. These authors have carefully reviewed and analysed the evidence base nationally and internationally, conducted a three-stage consultation process, undertaken site visits to three nursing homes (two of which were virtual) and talked with residents and relatives identified by independent advocacy organisations.
Given its fast turnaround time, the report is most comprehensive and provides clear direction to policymakers and researchers.
While recommendations are welcome, there are aspects of this report that cause concern
Its key recommendations centre around topics including: public health measures for infection prevention/control and outbreak management; future admissions to nursing homes and nursing home management; data analysis; community support teams and clinical/general practitioner lead roles on these teams and in nursing homes; nursing home staffing and workforce education; visiting protocols, palliative care; communication; regulations and statutory care supports.
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Regarding these recommendations, consideration is given to timelines, with due cognisance given to the need for both short-term and more long-term actions.
Many of these recommendations relate to systems, structures and governance, all of which are welcome and long overdue. They signal a need for reform in aged care policy; for nursing homes to become part of a continuous spectrum of older persons’ services and for their better integration into the broader health and social care systems.
Others relate to the pandemic itself: the need for providers to be supplied with sufficient PPE; that all future residents must be tested for Covid-19 prior to admission, and that contingency plans are put in place to replace staff in the event of further absenteeism.
Other recommendations include a ban on nursing home staff working simultaneously across multiple sites, better clinical governance in nursing homes, with one GP having full responsibility for all residents in designated areas, multi-disciplinary team support and the need for a delegated activity co-ordinator.
Quality of life
While these recommendations are welcome, there are aspects of this report that cause concern. The first is the dominant focus on the patient rather than the person and the lack of attention paid to citizenship, personhood and quality of life issues.
We know that within nursing homes, choice, autonomy, connectivity, social contact, attachment and meaningful activities are important correlates of quality of life. Based on recent international research, we also know that the effects of confinement – the hazards of being left alone in one’s own bedroom for days without adequate social contact– can be more lethal than Covid-19 itself.
Isolation, loneliness, boredom and having no access to outdoor fresh air will inevitably adversely impact on residents’ physical, cognitive and mental health. Yet in this report, the user’s voice remains silent and the reader has no sense of how exactly Covid-19 restrictions have affected residents’ wellbeing and what remedies – creative, technological or otherwise – will now be put in place to safely resume recreational activities and reinstate what for many residents constitutes the most pleasurable part of their daily lives in nursing homes, namely, the cherished visit from a close family member or friend.
Secondly, given that close to three-quarters of people in Irish residential care facilities probably have dementia (in England it is 86 per cent and in Spain up to 76 per cent), the invisibility of this group of people within this report and the lack of attention paid to their unique and complex needs is striking.
We will always need nursing homes for our extremely frail and vulnerable loved ones
In ways this omission is not that surprising given that no dementia specialist sat on the expert panel and given that none of the three lead Irish dementia organisations – the National Dementia Office (NDO), the Alzheimer Society of Ireland (ASI) and the Dementia Services Information and Development Centre (DSIDC) – was invited to participate in stakeholder consultations.
Where reference to dementia occurs, this tends to be superficial – for example the inaccurate and lightweight commentary made by one stakeholder respondent that dementia sufferers are a sub-group in nursing homes who may need extra attention.
Residents’ rights
No real consideration is given to residents’ rights even during a pandemic crisis and their need to take exercise, see a family member, remain occupied in meaningful activities, attend Mass and so on. Nor is consideration given to the additional strain the escalation of challenging behaviours places on frontline care staff. Likewise the requirement that all staff receive dementia care training seems to be tacked on as a last minute recommendation, notably coming after end-of-life training is first cited.
Reports are often a useful way for governments to demonstrate that action is being taken and avoid making substantive changes – until a crisis occurs. Now a crisis has occurred, where tragically many human lives have been lost, a report has been written, so political action is hopefully imminent provided funding becomes available.
The Leas Cross report in 2006 was instrumental in bringing about the regulation of Irish nursing homes with a new Health Care Act introduced and new standards for designated residential care settings launched. Despite its hugely biomedical focus, this new report will hopefully bring further reform to an aged care system urgently in need of overhaul.
A final cautionary note is that myths and misunderstandings about older people and their care often prevail, and the recommendation for a shift in the model of care in Ireland does not mean the elimination of nursing homes but rather their reconfiguration. We will always need nursing homes for our extremely frail and vulnerable loved ones. Nor does it mean placing the responsibility for care back into the hands of family members, mostly women, wives and adult daughters, many of whom are already hugely stressed and exhausted from providing 24-hour care with very limited State support.
It means offering our frail and vulnerable loved ones and their family members choice and giving them a range of care options including housing with care, group dwellings, sheltered housing, assisted living, nursing homes and most importantly the option to stay in their own homes with adequate home care supports including assistive technology and intensive home care packages. These are options they clearly desire and deserve but sadly until now have been grossly under-developed and under-resourced in Ireland.
Suzanne Cahill is Honorary Professor in Dementia at Trinity College Dublin