Questions and reflections on memory, death, and aged care in COVID-19 times

10 MINUTE READ

from Luke’s Journal 2020 | Ageing Gracefully | Vol.25 No.3

I try to remember all their names and faces, but there are so many.

• The retired pharmacist with dementia whose mild word-finding difficulties in English (unusually) disappeared when he spoke in the 6-7 other languages he knew. He was nevertheless declining cognitively after losing the mental stimulation from his wife’s daily visits to play cards and backgammon. She only lived down the road – so near yet so far. She would come to stand in the garden below his “balcony” (window) for a chat – “We’re like Romeo and Juliet,
  but in reverse!” he said.
• The frail 36kg Indonesian lady, bed and chair-bound, whose family could only wave at her through the glass doors of her RACF*. Could she still recognise who they were anymore? They wondered if she was eating, without them visiting to patiently spoon in her pureed diet. She told me her favourite food was fried chicken.
• The nth episode of recurrent aspiration pneumonia in as many months for the gentleman with advanced dementia. Back in hospital yet again (thankfully, COVID-negative) because his family would be unable to visit him at all if he remained in his RACF for treatment…

There are so many families who are unable to see their loved ones, our patients, for months – even as they might be approaching the end of life. Death seems so much more lonely and scary during COVID-19 times.^1-4 I helped to draft a local guidance sheet on the palliative management of COVID patients approaching end of life in RACFs, noting that the drug doses and up-titration rates were significantly higher than those we normally used in the frail elderly, because of how severe and distressing symptoms in a COVID death can be.⁵ I spent hours with my public health and outreach colleagues in Zoom meetings, poking holes through RACF outbreak management plans one by one. We watched events unfold south of the border, fearing the worst if our turn came, with 4500-odd residents across 60 RACFs in our district. And the cost of trying to keep them ‘safe’? A deterioration in relationships, quality of life, oral intake, the early detection of subtle delirium and myriad other problems, person-centred BPSD* management, and increasing carer stress.

This pandemic has served to further highlight the cracks (chasms) in the aged care system that were already being brought to light by the Royal Commission. Chronic understaffing and underfunding, lack of adequate training, overuse of chemical and physical restraint, and the list goes on.^6,9 Yet Australia still has one of the highest proportions of elderly living in RACFs compared to other OECD* nations⁷ – why is this the case? Alternative options are limited when care needs exceed the practicalities of what can be managed outside of institutionalised aged care. I spend a large portion of my time counselling families through the guilt, loss and anxiety surrounding this difficult decision with no good answers.⁸ It is not our place to judge another’s circumstances, only to allow them the dignity of risk, and support them through whatever choice they make. And true, there are some RACF residents who call their facilities ‘home’ and would rather stay there than be transferred to hospital, or to avoid feeling like a burden to their families. Not to mention the many RACF staff who genuinely care, but are restricted by the limitations of bureaucracy, funding and their own human strength.

“Death seems so much more lonely and scary during COVID-19 times.”

So, how can we improve the parlous state of aged care in Australia? Where the frail elderly are hidden away in institutions and where their individuality becomes just another number? Perhaps it may help to view the older person (no matter their cognition, function, or social background) not as troublesome, irrelevant, a disease/problem to be solved or a burden on society, but as a person made in the image of God – beloved and deserving of dignity, respect and the best available evidence-based, person-centred care we can provide. They are someone’s friend, parent, grandparent – but even if they weren’t (I have met many “orphaned” elderly in RACFs) it shouldn’t matter.⁹

Somewhere in the middle of the pandemic, my grandfather died at home in his sleep, aged 94. I remember the feeling of shock as I scrolled through the messages while walking down from the COVID ward after a post-take round (all turned out COVID negative, thankfully). My grandfather, the staunch Methodist whose last months were blunted by a progressive decline from vascular dementia, was finally released from the indignities of a crumbling body on the frailty trajectory into a wondrous eternity in the loving arms of Jesus. I had the strange thought that I’d probably been awake as he was taking his last breaths, having been woken at 2:30am by yet another call from ED. The rest of the day’s routine unfolded numbly with its usual meetings, teaching and administrative duties. Perhaps it was the cumulative exhaustion from months of pandemic tension without a sign of reprieve on the horizon (or the pressure release of annual leave), but one of the last things one feels like doing is looking after other people’s grandparents when one’s own has just died. But I turned up to work the next day anyway (as you do too, so often). Focusing on other people’s problems is such a great mental distraction. Besides, the team was understaffed due to sick leave (all turned out COVID negative, thankfully). It helps when you can hide half of your grieving face behind a surgical mask. And so, we soldier on – as my ever-pragmatic grandmother said, “That’s just life.”

Many told me it was a blessing to be able to die at home in his sleep – yet why is this much-envied outcome so difficult to achieve? Most people don’t wish to die alone, or surrounded by strangers, unable to communicate their needs and utterly dependent.^2-4 But most people also don’t begin to talk about their goals of care until it’s too late, and then the overlay of fear, denial and unrealistic expectation plays in. I’ve had countless discussions about advance care planning (even more in the era of COVID-19), with so many met by surprise at the mere notion. Age and multi-morbidity are key risk factors for increased mortality from COVID-19,¹⁰ though there is still a proportion of the elderly who will have a minor illness and survive it, receiving supportive treatment that does not require hospitalisation. But inevitably, death is a reality that faces us all with rising probability as age increases. I have seen such vastly disparate perspectives on the appropriate management of frail, severely impaired older persons (ranging from doing “everything” including CPR and invasive life support, to considering euthanasia) that I begin to question the underlying views on the meaning or purpose of an individual’s life and death that drive this. The Christian perspective suggests that the value of one’s life does not depend on health, function, dependency, choice or the views of others, but on something more intrinsic and difficult to define: the worth of individuals as made in God’s image, whose times are in His hands. And yet they are flawed by sin, their bodies subject to the disease of death (which an earthly physician can never cure), with the only certainty being the eternal life in Jesus which follows. How can we as clinicians better enable those who are at the ends of their earthly lives to face death with dignity, peace, and freedom from fear?

“How can we as clinicians better enable those who are at the ends of their earthly lives to face death with dignity, peace, and freedom from fear?”

I don’t claim to have the answers to any of the questions I’ve asked, and I’m not sure where they might exist. But just as the Lord does not forsake the elderly (Psalm 71), so should we not. The important thing is to keep asking the questions, fighting for better solutions, constantly reevaluating the individual’s needs as their circumstances evolve – in spite of the uncertainty without a one-size-fits-all approach. 

I often get asked why I chose to become a geriatrician – you might say we have a bit of a chip on our shoulders that many do not entirely understand what exactly it is that we do, as perhaps one of the less “desirable” and more “generalist” specialties.

It is because of the people: 

• the opportunity to spend time with and get to know my patients (and write 4-page CGAs* on them) and their families, 
• taking a holistic and individualised approach to caring for a vulnerable population, 
• and finding out what matters most to them as they reach the pointy end of life. 

But it’s also the people I get to work with – amazing multidisciplinary teams, the people in the sector who are all striving to provide the best possible care of the aged. No-one ever said it would be easy, and like all geriatric medicine, it’s a team effort – a society effort, even. 

And so to the aged and all those care for them, whether personally or professionally, I would encourage you with this verse – which provided great comfort as I mourned my grandfather whom I will not see again in this life. I used it in the printouts for his funeral, only belatedly realising it was my Powerchart password at the time (this is my way of providing new reminders from God’s word every 6 months or so – don’t worry, I’ve changed it since then!). It speaks to the hope of eternity and the source of inner renewal that enables us to persevere:

“Therefore we do not lose heart.
Though outwardly we are wasting away,
yet inwardly we are being renewed day by day.
For our light and momentary troubles
are achieving for us an eternal glory that far outweighs them all.
So we fix our eyes not what is seen, but on what is unseen,
since what is seen is temporary, but what is unseen is eternal.”
2 Corinthians 4:16-18

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*Abbreviations:

RACF = residential aged care facility (i.e. nursing home)

BPSD = behavioural and psychological symptoms of dementia (e.g. wandering, aggression, agitation, apathy, depression, sleep-wake cycle disturbance)

OECD = Organisation for Economic Co-operation and Development

CGA = comprehensive geriatric assessment, the “black-box” core business of geriatricians, comprised of a multidimensional, usually interdisciplinary process of assessing an older person’s medical, psychosocial, functional and cognitive status (often within the frameworks of geriatric syndromes), with the aim of developing patient-based interventions within an overall treatment plan aimed at optimising function (11)

Bibliography:

1. Wakam, G.K., Montgomery, M.D., Biesterveld, M.D. & Brown, C.S. (2020). Not Dying Alone – Modern Compassionate Care in the COVID-19 Pandemic. N Engl J Med 2020; 382:e88 || DOI:10.1056/NEJMp2007781
2. Burke, D. (2020). Coronavirus preys on what terrifies us: dying alone. CNN World 29 March 2020. https://edition.cnn.com/2020/03/29/world/funerals-dying-alone-coronavirus/index.html 
3. Dow, A. (2020). Cancer patient dies in isolation, waiting for negative COVID-19 test. The Sydney Morning Herald, 15 April 2020. https://www.smh.com.au/national/cancer-patient-dies-in-isolation-waiting-for-negative-covid-19-test-20200415-p54jyg.html 
4. Hamilton, M., Kirby, E. & van Toorn, G. (2020). COVID-19 places spotlight on dying alone. Australian Ageing Agenda, 27 May 2020. https://www.australianageingagenda.com.au/contributors/opinion/covid-19-places-spotlight-on-dying-alone/ 
5. ANZSPM (2020). Further Symptom Management in COVID-19 patients: Treatment Approaches and Alternative Routes http://www.anzspm.org.au/c/anzspm?a=sendfile&ft=p&fid=1591173787&sid=
6. Commonwealth of Australia (2019). Royal Commission into Aged Care Quality and Safety: Interim Report – Neglect (Volume 1). https://agedcare.royalcommission.gov.au/sites/default/files/2020-02/interim-report-volume-1.pdf
7. Dyer, S.M., Valeri, M., Arora, N., Tilden, D. & Crotty, M. (2020). Is Australia over-reliant on residential aged care to support our older population? Med J Aust; 213 (4):156-157.e1. || doi: 10.5694/mja2.50670
8. Porter, M. (2020). When Alzheimer’s Disease came for my husband, I was left like a widow who cannot mourn. ABC News 29 August 2020. https://www.abc.net.au/news/2020-08-29/aged-care-living-with-unmourned-grief/12570328
9. (recommended further reading) Holland-Batt, S. (2020). Magical thinking and the aged-care crisis Utopian fantasies and dystopian realities. Griffith Review 68.
10. Holt, N.R., Neumann, J.T., McNeil, J.J. & Cheng, A.C. (2020). Implications of COVID-19 in an ageing population. Med J Aust (preprint) 6 May 2020 https://www.mja.com.au/journal/2020/implications-covid-19-ageing-population
11. Kelly, L. & Caplan, G. (2014). Comprehensive geriatric assessment. In Caplan, G. (ed), Geriatric Medicine: An Introduction (1st ed., pp17-29). IP Communications.