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.

from Anne in Adelaide, Australia: more about the Sewing life …

Quilt making

August 6. Further to the sewing life: since my blog about sewing, I came across a ‘good news’ story.

Patricia, my cousin in northern-NSW, Australia, responded to tell me about creating quilts. Various community sewing groups with this specialised skill make quilts for hospitals as well as home-made face masks. They create a range of quilts and kids who are in hospital can choose one to keep. My cousin says it is so much more homely to have a bright quilt covering your bed rather than hospital blankets. They also make smaller quilts for newborns that did not survive. The parents can use the quilt to wrap their tiny baby.

a kid’s quilt

This little story is but a reminder of the thousands of people in small communities doing selfless things for others during these challenging times.