From David Vincent in Shrewsbury, UK: The technology of bereavement

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April 9.

“Always go to other people’s funerals,” advised Yogi Berra, “otherwise they won’t come to yours”.

The list of other people’s funerals I have not attended is growing. Early in March my godfather died at 94 in London. A fortnight later a contemporary died in Scotland, six weeks after the death of his wife. None of these fatalities, as it happens, were directly from Covid. Pneumonia, cancer, a fall in old age, have not taken a vacation during the pandemic.

We are particularly diminished by the sudden loss of our friends in Scotland. We began our careers and our families together, living and working alongside each other for three decades, and then regularly exchanging visits as our paths diverged. In John Donne’s terms, a full promontory has been washed away from our lives.

In each case, the lockdown has prevented us from attending the final ceremony. In Scotland the current rules permit a congregation of no more than twenty. They must not sing, for fear of infection, although by arrangement a bagpiper is allowed. What science has determined that the coronavirus will be safely contained within a bagpipe I know not. In any case our friend, from a professional Edinburgh family, a world-class Russian linguist in his working life, had, like many Scots, no sympathy at all for kilts, tartans, bagpipes, and, at least until Brexit, the nationalist movement.

Instead we depend on Obitus, which describes itself as ‘a leading UK provider of bereavement technology services.’ The firm was apparently founded a decade ago, an indication that virtual mourning was not invented by Covid. It has expanded in the last year, working with funeral directors to connect the congregations unable to attend. We sit at home, three hundred miles away, equipped with a login and a password, and five minutes before the ceremony is due to begin, an empty, unnamed, funeral chapel appears on our screen.

It is easy to criticise the proceedings. There is one fixed camera at the rear of the chapel, transmitting an unchanging view of the backs of twenty mourners. The sound quality is indifferent, the visual effects non-existent. After half an hour the congregation leaves separately, unable to attend a wake larger than six people, and we close the lid on the laptop. In a week’s time we will repeat the process for my godfather.

Obitus fully occupies the digital universe, with all its perils. The small print of the contract specifies that, ‘in particular, we will not be liable for any damage or loss caused by a distributed denial-of-service attack, any viruses trojans, worms, logic bombs, keystroke loggers, spyware, adware or other material which is malicious or technologically harmful that may infect your computer, peripheral computer equipment, computer programs, data or other proprietary material as a result of your use of the Website or you downloading any material posted or sold on the Website or from any website linked to it.’ Not problems faced by a clergyman with his prayer book.

But as in so many Covid contexts, the technology is better, much better, than nothing at all. Whilst the long-standing debate about the threat posed to privacy by digital communication becomes ever more urgent, in the pandemic computer screens have in all kinds of ways helped to keep families and networks of friends together. And they need not be the final means of bidding farewell. In the case of our Scottish friends, a more relaxed memorial is planned for when physical gatherings are once more possible.

That is what we must do when the pandemic is over. We will spend our days celebrating the lives of those we have lost.

From David Vincent in Shrewsbury, UK: ‘Sadly’

February 24. We have become accustomed to the ritual announcement of Covid data.

The Government is producing daily figures on the progress of the pandemic. It falls to the newsreaders on the main television channels to deliver these at the head of the bulletin. There are scores for infections, hospital admissions, deaths within 28 days of a Covid diagnosis, and recently, vaccinations.

When it gets to the deaths, always the same feeling is inserted. ‘Sadly’ XXX deaths were reported in the last twenty-four hours.  The point of this extra descriptor is presumably to indicate that the broadcasters comprehend the tragedy that is unfolding day by day. They are not just reading from a teleprompter, but somehow engaging with their own emotions. When they can remember, politicians will also furrow their brows and put the word in front of the deaths they are discussing.

‘Sadly’, when repeated night after night, is an oddly featureless term. I might use it to describe the recent demise of several roses in the arctic winds that blew through my garden last week or the failure of an online order to arrive. I would not think it adequate to encompass the pain I might feel if I were being connected to a ventilator or if a close relative had died.

There is, after all, a thesaurus of terms commentators could use: ‘tragic’, ‘devastating’, ‘infuriating’, ‘unnecessary’. Instead repetition turns ‘sadly’ into a cliché, expressing little more than indifference. This week it means, ‘who cares as long as the figures are coming down.’

Finding a public language to describe the constellation of grief that Covid-19 causes is far from easy. Attention has lately been drawn to an American study which recalculates the bereavement multiplier, the number of individuals left suffering after a death.* The research increases what has been the conventional ratio of five (see my post ‘Computing the Sorrow’, January 22) to just under nine. In the UK context, the current death toll of 121,000 would generate a little over a million bereaved people; globally the figure would be twenty-two million.**

As is often the case, however, sophisticated mathematical tools are being applied to very coarse data. The American study focuses on the nuclear family network of grandparent, parent, sibling, spouse, or child, and asks, given the age-specific Covid mortality and US demographic patterns, how many people would be affected by a death. It is essentially a connections survey. No attention is paid to wider networks of relatives, friends and neighbours, nor are there any questions about the nature of the loss, which presumably can range from shattering grief to passing regret. In the end it is just another version of ‘sadly’, a generalised description of an event which in the States has now accounted for 500,000 lives, or, by this multiplier, 4.5 million bereavements.

More useful research is beginning to appear on the quality of the experience.

Deborah Carr and colleagues (good to see the old stars still working) identify two kinds of death: “Good deaths …are distinguished by physical comfort, emotional and spiritual well-being, preparation on the part of patient and family, being surrounded by loved ones in a peaceful environment, being treated with respect and dignity, and receiving treatments concordant with one’s wishes.”

Whereas: “bad deaths … are distinguished by physical discomfort, difficulty breathing, social isolation, psychological distress, and care that may be discordant with the patient’s preferences.” For the bereaved they are characterised by “the erosion of coping resources like social support, contemporaneous stressors including social isolation, financial precarity, uncertainty about the future, lack of routine, and the loss of face-to-face mourning rituals that provide a sense of community and uplift.”**

Yesterday evening’s newsreaders should have said: “in the last twenty-four hours there have been 548 bad deaths.”

*https://www.theguardian.com/world/datablog/2021/feb/22/covid-4-million-family-membersgrieving-us-study-finds

**Ashton M. Verdery, Emily Smith-Greenaway, Rachel Margolis, Jonathan Daw, ‘Tracking the reach of COVID-19 kin loss with a bereavement multiplier applied to the United States’, Proceedings of the National Academy of Sciences of the United States, 117, 30 (July 28, 2020):17695-17701. https://doi.org/10.1073/pnas.2007476117.

** Deborah Carr, Kathrin Boerner, Sara Moorman, ‘Bereavement in the Time of Coronavirus: Unprecedented Challenges Demand Novel Interventions’, Journal of Aging & Social Policy, 32, 4-5 (2020): 425-431. https://doi.org/10.1080/08959420.2020.1764320

From David Vincent in Shrewsbury, UK: On Death and Dying

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Elisabeth Kubler-Ross

January 20.  Last Sunday, my friend and colleague John Naughton, in his endlessly wise and informative daily blog, Memex1.1, appropriated the Kübler-Ross five stages of dying model in order to frame a coruscating attack on the political mismanagement of the pandemic both here and in the United States.

He addressed Denial, Anger, Bargaining and Depression, concluding with Acceptance:

“We’re nowhere near that yet. People still haven’t grasped that there’s no going back to the way we were. That past is indeed a different country. It’s also a country that was heading straight for climate catastrophe. So every time someone talks about a “return to growth” you know that the reality of what lies ahead hasn’t yet been appreciated. The only kind of growth worth having post-pandemic is a greener, carbon-neutral one. And the only question worth asking is: could we create such a future?”

The piece caused me to take down from my shelves the original, enormously influential book, On Death and Dying.  Since its publication over half a century ago, the notion and labelling of the five stages has been the subject of widespread debate.  The hospice movement, which Kübler-Ross did so much to inspire, no longer uses them.  But re-reading the text highlighted some basic truths about dying in the pandemic.

Kübler-Ross’s opening premise was that “dying nowadays is more gruesome in many ways, namely, more lonely, mechanical and dehumanized.” (p. 21)*  Despite the major improvements in palliative care since 1969, the technologies of medical intervention have become still more impersonal, the patient yet more subordinated to the authority of doctors and the routines of hospitals.

Her insistence that fear of death can only be effectively countered if the issue is explicitly considered  by those not yet dying, remains entirely valid. “It might be helpful” she writes, “if more people would talk about death and dying as an intrinsic part of life just as they do not hesitate to mention when someone is expecting a new baby.” (p. 150)  A beneficial outcome of the pandemic tragedies may be a new era of public engagement with what in most social settings remains an unvisited land.

However debatable the particular issue of ‘stages’, there can be no questioning Kübler-Ross’s central premise that it is the responsibility of all those working with the dying to be informed, caring listeners and that the reactions of those enduring a terminal illness are in their different ways rational and comprehensible.

The departure from the present crisis lies in the context of how this listening takes place.  The book begins by listing the changes that separate modern medicine from the past, including significant therapeutic interventions, increasing life expectancy, and the absence of pandemics.  The return of mass infection and death has fundamentally altered a basic assumption of the book.  “If a patient has had enough time”, Kübler-Ross writes, “(i.e., not a sudden, unexpected death) and has been given some help in working through the previously described stages, he will reach a stage during which he is neither depressed nor angry about his ‘fate.’” (p. 123).

The whole enterprise assumes the resources of a well-found (American) hospital, with teams of professionals including not only doctors and nurses but psychiatrists, social workers and chaplains, ready and able to spend long periods communicating with the patients as their disease takes its course over months or years.

The essence of dying with Covid-19 is that neither patients, nor their families, nor the staff of hospitals or hospices have remotely enough time to work through any sequence of emotional expression or support.  The common experience of those who are infected is for little to happen for the first few days, and then for the unlucky minority there is a sudden descent into breathlessness and other symptoms which leads rapidly to an intensive care unit.  Even if they ultimately survive the mechanical ventilators, they will have been unconscious throughout that part of their treatment.  Hospital staff are overwhelmed by the sheer pressure of numbers, radically reducing staff/patient ratios whilst at the same time trying to stand in for the presence of next of kin excluded by quarantine regulations.

It is the absence time for death and dying which more than the pathogens and the remedies most connects the Covid-19 pandemic with the flu and plague outbreaks that preceded it down the centuries.

Those on the front line have not given up on the challenge.  In the collection of radio podcasts, Letters from Lockdown (broadcast by the BBC PM programme), there is a particularly fine piece by a doctor which focuses on the multiple uses of her mobile phone.  It gets used to keep in touch at speed with staff around the hospital, to take pictures of the property bags of deceased patients, to relieve stress by playing music when in bed after an exhausting shift, and to provide at least a small window of communication to dying patients:

“my phone has been placed next to an old lady’s ear, on her pillow as she drifts into unconsciousness, breathing with shallow, irregular gasps, with hopes and promises  from her daughter, hoping that her mum will be able to hear her final words of love, even though she can’t be there to say them.”**

*Kübler-Ross extracts from: Elisabeth Kübler-Ross, On Death and Dying (1969: New York: Touchstone, 1997).

**Dr. Lisa Linpower, ‘Through My Phone’, Letters from Lockdown (London, Chatto and Windus, 2020), p. 171.