Trigger warning: death, suicide
Some Long Covid patients have expressed their realisation that, unless they are considered at high risk of death from acute, active infection with SARS-CoV-2, there is little the NHS seems to be able to do. It doesn’t matter whether these patients feel as if they are dying, so overwhelming and debilitating are the symptoms of severe cases of Long Covid. If hospitalised, patients generally receive excellent care and, once discharged, they are expected to recover. When patients don’t meet these expectations, healthcare professionals are often at a loss.
In part, this is associated with the lack of (effective) chronic care modelling in health services. Western healthcare is largely predicated upon an acute care model, where prompt and short-term treatment for a biomedically conceptualizable disease or injury is usually sufficient to restore the patient back to health. (This is also associated with the so-called ‘sick role’ which will be discussed under a further blog in this series).
The successes of the acute care model are most clearly seen in emergency and critical medicine, and it is this model which has, despite many tragic deaths from covid-19, saved countless lives. In essence, acute models acknowledge two outcomes: recovery or death. The fact that many people survive acute and critical illness (such as infection with SARS-CoV-2) but do not fully recover is not well accommodated by dominant explanatory and guiding healthcare frameworks. Primacy of mortality risk, as distinguished from morbidity, as a measure of seriousness of illness is a case in point.
Using mortality risk as a primary measure of seriousness of an illness (and therefore triage and access to care) is clearly appropriate in acute and critical care scenarios, but does not apply so well to chronic care. In many chronic illnesses, although mortality risk may be low (though risk of suicide from stigma and neglect should be considered), other measures such as quality of life, disability, functional health status and impact on carers should be considered when conceptualising seriousness of an illness. Indeed, for some people, quality of life is far more important than length of life.
Such points have been repeatedly made by some people within the ME/CFS and wider chronic illness communities; however, it would seem that it is has taken a pandemic, and for medical doctors to experience disabling chronic illness themselves, for this to filter through to the medical profession.
In a letter written to the BMJ, a group of doctors declare, as if by revelation, that ”death is not the only outcome to measure” in Long Covid. People with ME/CFS and other chronic illnesses do not need to be told this: ME/CFS is associated in research with a lower quality of life than cancer, congestive health failure, stroke and many other illnesses which are deemed far more serious than ME/CFS due to their higher mortality rate. These illnesses receive far better care than ME/CFS, meaning that some of the patients in the health services with lowest quality of life get the least care.
In a similar vein to the BMJ authors, Dr Elaine Maxwell, author of the recently published National Institute for Health Research report entitled ‘Living with Covid 19’, was reported in the media of having assumed, prior to report findings, that those patients most seriously ill (i.e. hospitalised) with Covid-19 would be those most affected by Long Covid (and thus, presumably, those that would be prioritised in rehabilitation care). In a BBC article, Dr Maxwell appeared surprised that people who were not hospitalised were in some cases far more severely affected with Long Covid sequelae than patients who were hospitalised. This highlights how the primacy of an acute care model, and drawing on mortality risk as the primary measure of seriousness of an illness, can cause some patients to be completely overlooked.
It is a sad truth that if Long Covid researchers had happened to listen to people in the post-viral chronic illness community over the past few decades, the findings of this report would not have come as a surprise. Indeed, I often wonder where we would be now in treating Long Covid patients (and other chronic post-infectious illness) if the health services, medical profession and associated health bodies had actually listened to patients who have experience of post-infectious illness, such as ME/CFS and chronic Lyme disease. I also wonder how many lives, and how much quality of life, of chronically ill patients could have been saved.
Clearly, chronically ill patients with low quality of life, with high functional impairment and whose illnesses may also impact on carers deserve the same quality of care, with or without potentially life-threatening complications, as patients who are acutely or critically ill. It can only be hoped that Long Covid might herald the start of a new approach, a new paradigm even, in science and healthcare. Meanwhile, the suffering of Long Covid and other chronically ill patients continue.
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