Who counts when we count cases and deaths from covid-19?

Carmel Hughes, Michael Tunney and Kate Lapane look at why covid-19 deaths in care homes are not being counted, and what needs to be done to protect those most at risk

The efforts to limit the spread of the covid-19 has brought about a widespread, radical transformation of everyday life, with virtually no one free from its effects. We are in lockdown and implementing physical distancing for social solidarity. We stay at home and wonder when life will return to normal. For the lucky ones, our homes have become sanctuaries and perceived as places of safety.

But what if your home is a nursing or care home? What if your family is no longer able to visit and you do not understand why? What if the staff taking care of you are suddenly wearing personal protective equipment (PPE), if such equipment is available?

You can’t hear what they are saying to you from behind a mask (if they have one) because you can no longer see their mouth when they speak to you. If you have dementia, you are likely confused, frightened, and unable to understand what is going on. What if you or your fellow residents contract the virus, develop symptoms, and become very unwell? Will you be denied treatments because of age or pre-existing comorbidities? Will you lack “priority” for scarce ventilators if needed? Finally, how are staff coping in this confusing new world, as they try to provide care under the most difficult of circumstances? What protection is direct care staff in nursing homes being offered?

Research has highlighted a continuing pattern of poor quality care for older people in this setting.1,2,3 Infection control has proven to be no different, and reflections on research undertaken by us show how little progress has been made as we now face a catastrophe in this care setting. Previous work demonstrated extensive colonisation with methicillin-resistant Staphylococcus aureus (MRSA) amongst residents and staff,4 with little high quality research on infection control strategies for preventing such transmission.5,6 A randomised controlled trial (RCT) focusing on an education and training programme on infection control for staff7 showed no effect and a follow-up qualitative study highlighted barriers to good practice—time, the non-clinical environment of homes, and financial resources to purchase the necessary equipment.8 Infection control was not seen as a priority.

Nursing homes represent a clustered group of individuals at the highest risk as most residents are of advanced age, have weakened immune systems, require assistance with activities of daily living and many have dementia, which may exacerbate the impact of chaos caused by pandemics. Many are receiving post-acute care, so disruptions to usual medical care caused by pandemics may lead to exacerbation of co-morbid medical conditions such as congestive heart failure, diabetes, and chronic obstructive pulmonary disease.

It is no surprise that care homes have emerged as centres where the coronavirus has spread with impunity. Media reports have highlighted that staff lack PPE,9 residents have been abandoned in nursing homes,10 and mortality is high. But the number of deaths are not officially recorded due to the lack of testing.11 Two very recent publications in Morbidity and Mortality Weekly Report described the impact of covid-19 in long-term care facilities in Washington State, USA, in terms of the rapid transmission and the number of deaths.12,13 Both reports recommended a range of protective strategies including restricting access to visitors and non-essential personnel, minimising resident-to-resident interaction, and use of PPE. However, it was noted that staff reported inadequate supplies of PPE and hand sanitiser,12 issues also acknowledged by the American Geriatrics Society.14

Some lessons about the inadequacies of nursing home emergency preparedness in the wake of natural disasters are likely to hold true in the face of this current pandemic.15 We have learned that forced transitions in these situations increase risk of mortality16 and hospitalizations.16,17 One survey revealed that 91% of long-term care health professionals, including direct care workers and other staff, noted they were “…ill-prepared to deal with public health emergencies.”18

So what should be the response to this perfect storm? Dosa et al. have outlined a number of practical guidelines for what they describe as a “population at highest risk”, such as minimising transmission, and protecting healthcare workers.19 But many of these recommendations pre-suppose that the infrastructure is in place to ensure that these actions can be implemented. But as was demonstrated by the reports from Washington state,12,13 this is not the case. Nursing homes are often viewed as being on the periphery of healthcare systems, and the place of last resort for care delivery. They are often privately owned, and therefore not seen as part of the responsibility of government or associated agencies.

Death is an inevitable part of old age. But this cannot be viewed as an acceptable reason for ignoring the growing numbers of covid cases and deaths in care homes. It suggests that these deaths don’t matter. They are not being counted because in some people’s minds, they don’t count. But that is not good enough.

Carmel M. Hughes, Professor of Primary Care Pharmacy and Head of the School of Pharmacy, Queen’s University Belfast, UK.

Competing interests: none declared. 

Michael M. Tunney, Professor of Clinical Pharmacy, School of Pharmacy, Queen’s University Belfast, UK. 

Competing interests: none declared. 

Kate L. Lapane, Professor in Population and Quantitative Health Sciences and Associate Dean, University of Massachusetts Medical School, USA. 

Competing interests: Since 2019, twice yearly Kate has consulted for two hours for Barbara Zorowitz to review guidelines for prescribing in post-acute care settings (Empirian).

You can follow Carmel and Michael on twitter @pharmacyatQUB and Kate @UMassMedical.

 

  1. Patterson SM, Hughes CM, Crealey G, Cardwell C, Lapane K. An evaluation of an adapted United States model of pharmaceutical care to improve psychoactive prescribing for nursing home residents in Northern Ireland (Fleetwood NI Study).  Journal of the American Geriatrics Society 2010; 58: 44-53
  2. Hofman H, Schorro E, Haastert B, Meyer G. Use of physical restraints in nursing homes: A multicentre cross-sectional study. BMC Geriatrics 2015: 15; 129
  3. Pauly L, Stehle P, Volkert D.  Nutritional situation of elderly nursing home residents.  Zeitschrift fur Gerontologoe und Geriatrie 2007; 40: 3-12
  4. Baldwin NS, Gilpin DF, Hughes CM, Kearney MP, Gardiner DA, Cardwell C, Tunney MM.  Prevalence of meticillin-resistant Staphylococcus aureus (MRSA) colonization among residents and staff in nursing homes in Northern Ireland.  Journal of the American Geriatrics Society 2009; 57: 620-626
  5. Hughes CM, Smith MBH, Tunney MM.  Infection-control strategies for preventing the transmission of meticillin-resistant Staphylococcus aureus (MRSA) in nursing homes for older people (Review).  Cochrane Database of Systematic Reviews 2010, Issue 1
  6. Hughes CM, Tunney MM, Bradley MC. Infection-control strategies for preventing the transmission of meticillin-resistant Staphylococcus aureus (MRSA) in nursing homes for older people (Review).  Cochrane Database of Systematic Reviews 2013, Issue 11
  7. Baldwin NS, Gilpin DF, Tunney MM, Kearney MP, Crymble L, Cardwell C, Hughes CM.  A cluster randomised controlled trial of an infection control education and training intervention programme focussing on MRSA in nursing homes for older people.  Journal of Hospital Infection. 2010; 76: 36-41
  8. McClean P, Tunney M, Parsons C, Gilpin D, Baldwin N, Hughes C.  Infection control and methicillin-resistant Staphylococcus aureus (MRSA) decoloniation-the perspective of nursing home staff.  Journal of Hospital Infection 2012; 81: 264-269
  9. Booth R.  Residential homes ‘desperate’ for PPE, as two care workers die. https://www.theguardian.com/society/2020/apr/06/residential-homes-desperate-for-ppe-as-two-care-workers-die).  Accessed April 10th 2020.
  10. Connolly K. Care home across globe in spotlight over Covid-19 death rates (https://www.theguardian.com/world/2020/apr/09/care-homes-across-globe-in-spotlight-over-covid-19-death-rates. Accessed April 10th 2020.
  11. Booth R. Hundreds of UK care home deaths not added to official corona virus toll.   ((https://www.theguardian.com/world/2020/apr/09/covid-19-hundreds-of-uk-care-home-deaths-not-added-to-official-toll). Accessed April 10th 2020
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  14. American Geriatrics Society.  American Geriatrics Society (AGS) Policy Brief: COVID-19 and Nursing Homes.  Journal of the American Geriatrics Society 2020; doi 10.1111/jgs.16477
  15. Office of Inspector General. Nursing home emergency preparedness and response during recent hurricanes: OEI-06-06-00020; August 2006. Report No.: OEI-06-06-00020.).
  16. Dosa D, Hyer K, Thomas K, Swaminathan S, Feng Z, Brown L, Mor V. To evacuate or shelter in place: implications of universal hurricane evacuation policies on nursing home residents. Journal of the American Medical Directors Association 2012;13 :190.e1-7
  17. Thomas KS, Dosa D, Hyer K, Brown LM, Swaminathan S, Feng Z, Mor V. Effect of forced transitions on the most functionally impaired nursing home residents. Journal of the American Geriatrics Society 2012; 60:1895-900
  18. Mather LifeWays Answers National Call: To Implement Emergency Preparedness and Bioterrorism Training for 25,000 Long-Term Care Workers.  https://www.mather.com/archives/1407, accessed April 11, 2020
  19. Dosa D, Jump RLP, LaPlante K, Gravenstein S. Long-Term Care Facilities and the Coronavirus Epidemic: Practical Guidelines for a Population at Highest Risk. Journal of the American Medical Directors Association 2020; doi.org/10.1016/j.jamda.2020.03.004