Does palliative care have a problem with…“the c-word”? By Dr. John MacArtney

This is an article about the new c-word… COVID. Let me reassure you that if you find “COVID talk” difficult and is something you’d rather ignore, you are not on your own.

Take home messages:

  • Hospice staff are still struggling with the emotional implications of working through the emergency period and foreground ways of getting back to pre-2020 “normal”, but also recognise there is a ‘new normal’ that includes COVID affecting patients’ amount and quality of life left, which can get pushed to the background.
  • This tension reflects the wider “living with COVID” approach in healthcare, which assumes people have time and capacity to recover from infections.
  • The uncertainty staff expressed suggests that hospice palliative care needs to engage in more explicit reflection on what ways of mitigating COVID-19 best fulfil a core value of promoting quality of life left.

In a recent interview Dr Jeanne Marrazzo, head of the National Institute of Allergy and Infectious Diseases in the USA – a job previously held Dr Anthony Fauci – reflected on the difficulties of addressing COVID-19 mitigations in 2024, “I thought to myself, it’s more that people just want to live a normal life. We really don’t want to go back. It was so painful. We’re still all traumatized. Let’s be honest about that. None of us are over that”.

But unfortunately for people working in palliative care, COVID is not something you can avoid.

In our recently published study of interviews with hospice staff conducted two-years after the ending of the UK’s emergency public health period in July 2021, we asked them what “living with COVID” meant for them now. We found that those working in palliative care were similarly still struggling to process what took place during the emergency public health period, which was having implications for how they felt about living and working with COVID now.

COVID… was emotional

In a previous study we identified how the public health emergency posed an existential threat to hospice palliative care. This was because this exceptional period challenged how the ideals of palliative care – to provide timely, holistic care that promotes the quality of life left – could be achieved. But even though the emergency measures had been withdrawn, we found that the problem of COVID-19 had not gone away.

It is not an understatement to say that the difficulties of the emergency period continue to significantly affect staff working in palliative care. Like many other studies, we recommended that service providers be aware that some staff many still need additional emotional support.

But the impact of the “pandemic trauma” is not only personal. Those memories of the emergency period are affecting hospice palliative care practices and policies for mitigating COVID-19 today.

What is normal about living with COVID?

In our most recent study staff told us how distressing it had been to implement many of the mitigations in the emergency period and reflected that such measures should never again be allowed to affect patient’s quality of life. They explained it was important that, although it will not be forgotten, COVID was to be put in the “background” or better still, relegated to the past. They would put appropriate measures in place for infections on a case-by-case basis, but otherwise it was important to “move on” from Covid-19 and return to previous normal ways of working.

However, staff also recognised people with life-limiting illnesses are some of those who remain at highest risk from a COVID-19 infection affecting the amount and quality of life left. For them, the idea that those with life-limiting illnesses could contract the virus because they had accessed palliative services was particularly worrying. This anxiety was most obvious when staff reflected upon the largely reactive approach hospices have adopted to mitigate a virus that is transmitted asymptomatically, but is no longer proactively monitored.

Their concern belied a social paradox that healthcare faces when trying to address COVID. Ideas of how to mitigate COVID are associated with staff experiences of the emergency period that so many found distressing and want to avoid returning to. But many healthcare staff also recognise the added risks patients face if they do contract COVID. However, the emotional difficulties some had with talking about COVID along with the systematic push across healthcare and society to put COVID in the background has made it very difficult to address the “new normal” in which COVID circulates.

It is time to talk about what COVID-19 means to palliative care… now

This paradox is especially problematic for palliative care, especially when you take into account the wider socio-political context within which palliative care finds itself supporting people with life-limiting illnesses.

Since July 2021 the country and healthcare have been following a “living with COVID” approach to managing infections. This policy is premised on the assumption that people can withstand multiple infections. As such, it has been described as an ableist policy.

Not only that, but the mitigations originally promised to those made vulnerable by a “living with” approach have been systematically withdrawn (e.g. testing, monitoring, welfare support) or socially devalued (e.g. masking, social distancing, vaccines). A “living with” approach can therefore also be disablist.

And just as the effects of the COVID-19 emergency were not experienced equitably, we know that the risks of living with COVID are not the same for all. In particular, being made vulnerable to COVID intersects with and exacerbates other social and economic disparities.

Providing hospice palliative care in-line with a “living with” approach is therefore not unproblematic for a service that seeks to promote quality of life left; that argues a dying person’s life is of equal value to a healthy one; that needs to provide care wherever and whenever it might find people in need of palliative support; that puts so much time, research and effort into increasing equity of access.

What comes next…

In our study we documented a range of responses to the difficulties staff face when reckoning with the socio-political realities of living with Covid in the context of hospice palliative care, including denial, anger, bargaining, helplessness, sadness, and fatalism.

What path hospice palliative care takes next is unclear. But it seems to me that the first step is to recognise that there are palliative care professionals who are struggling, professionally and personally, with a “living with (getting) COVID” approach that can be seen to fall short of the values and practices of hospice palliative care. It might then be possible to explore better ways to promote quality of life left while seeking to live with not getting COVID.

Author

Dr. John MacArtney
Marie Curie Associate Professor of the sociology of dying, palliative care and the aftermath
Warwick Medical School, University of Warwick
X: https://x.com/johnmacartney

Declaration of interests

I have read and understood the BMJ Group policy on declaration of interests and declare the following interests: none.

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