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Palliation in a pandemic

Professor Mark Taubert is a consultant in palliative medicine at Velindre University NHS Trust and Cardiff University School of Medicine. Here, he answers questions about what has changed in palliative care during the COVID-19 pandemic.

How has the pandemic affected your specialty? What have been the main challenges?

It has made us all quite tired and sometimes emotional if I am honest. I was asked to write an article for the Telegraph recently, and one patient’s experience in particular kept coming back to me, which I think I will never forget. The challenge of not having visitors and family by the bedside has been enormous.

I remember at the start of the pandemic through my work with the European Association for Palliative Care I saw what was happening in other countries like Italy and Spain and that was quite frightening. A few colleagues, including Simon Tavabie, wrote an article about this time of preparation, entitled Waiting for the storm, which felt like a very apt description.

The term ‘palliative pandemic’ started circulating in Italy, and we got some harrowing reports from Lombardy, where patients were dying alone on hospital ward corridors. The Italian situation was likely to predict what we would face here in the UK with an estimated 2–3 week delay.

I must say, services got together like never before to write guidelines and produce videos for generalists who might be forced to provide much more palliative care than they had previously been trained for or been used to.

How has COVID-19 changed conversations about dying?

There have been a few steps forward, and a few steps back. Some patients knew they might deteriorate suddenly which made them more open to talking about their wishes and fears. I was involved in a few family discussions that happened via video-link. It was quite emotional really, but they were things that needed to be said.

Some people died soon after, and their wishes were known and taken into account. Others survived a severe bout of COVID-19 but due to underlying healthcare conditions, the conversation around what mattered most to them was still very relevant. I asked a few people in follow-up clinics whether their plans had changed, and no one wanted to reverse their prior expressed views on ceilings of treatment.

I did have some people say, ’Don’t give me one of those DNR forms now, will you?’ – but that actually then became a prompt to discuss fears, concerns and misconceptions.

Much of what is said in Talking about dying: how to begin honest conversations about what lies ahead still holds true, but in the pandemic it had to be seen in the context of a rapid illness, that could (or could not) result in death within a fortnight.

Where patients survived against expectations, you then also had a situation where it was quite appropriate to revoke treatment escalation plans and DNACPR decisions, or where people maybe rewrote their advance decision to refuse treatment document. Sometimes the clearest situations were those when a patient had granted a lasting power of attorney for health and welfare to someone who was able to refuse certain treatments on their behalf when they had lost capacity to be involved in decisions.

The need to individualise these discussions, talk them through with patients and their families (unless the discussion might lead to harm) and to not stigmatise and base them on factors like disability, was already enshrined in our national Welsh DNACPR policy, but the message was repeated and repeated. Many clinicians, including myself and colleagues, went on the news on a few occasions to ensure this was a consistent public message.

Have we learned anything in the past year that would change the recommendations of the report?

I’ve certainly learned a lot. One of the key experiences was working with a dedicated team on the What matters most charter, which takes a public health approach to palliative care and advance care planning.

I think the fear about DNACPR decisions that is evident among some people can be improved by approaching conversations the other way round. Starting with the ‘meta’ question of what matters most to an individual and their loved-ones, and then narrowing it down to possible future decision on preferred options in their care, least favourite interventions, and how to go about the final hours and days of life, may work better than going in asking about CPR. We tried to do just that with the charter and videos, and I feel it adds to the Second conversation approach suggested by the RCP extremely well.

If you could wave a magic wand, what one thing would you ask of government(s) on improving end-of-life care?

A magic wand would be very nice indeed!

I would ensure enhancement of education, policy and research in end-of-life care. Getting the ideals outlined in the RCP Talking about dying report out there, the Marie Curie Daffodil standards, and the What matters most charter. Teaching people about the Mental Capacity Act is vital. I would ask them to have a palliative care and end-of-life care education day every single day of the year, so we reach all staff, patients, carers, district nurses, GPs, healthcare assistants and the public, and campaign for much better understanding of the last days of life. I would make Kathryn Mannix’s book With the end in mind compulsory reading on school curricula.