‘Whispers of some quiet conversations’- Palliative care after the pandemic

By Dr Ollie Minton  Twitter: @drol007

The song Africa, by Toto, made me reflect on our strange times. It prompted me to write down some thoughts on where we are now, and where Covid-19 might lead us. For instance, the song text contains the words: “I know I must do what is right”.

What is right? The message from nurses, allied healthcare professionals and doctors in palliative care over the years has been clear: it’s ok to talk about death, don’t shy away. More is best, when it comes to open discussions about dying. This might not make me the most popular choice of conversation partner (at the many parties I get invited to), but yes, death is normal, death is universal, death is best faced head-on. And it’s important we don’t go into avoidance drive on this area, hiding behind war and violence metaphors, or the heightened polarised emotions in times of plague, pandemics and pestilence [delete as you see appropriate]. That’s why I hold sermon in the kitchen, whenever there is a party and loudly proclaim that I’m a palliative care doctor.

The mainstream media are rightly focused on the front-end responses to COVID-19, with PPE, testing, tracing and allocation of resources making headlines on every news cycle. Alongside this is a growing realisation of the need to give some attention to end of life care, grief and bereavement. The daily tsunami of information via my smartphone is overwhelming, and the growing numbers of people who are very sick and dying serves to solidify the message that more needs to be done for those that might live. But let’s not make this distract from consideration of those that might die, however fashionable ‘survival/fighting mode’ might be at the moment.

Cue Toto again: “Gonna take some time to do the things we never had

We need to take time to pause and state what is important. Over the years, palliative care has developed huge resources and research efforts so that we can now. Proudly, lay out what has been done, and adapt it for Covid-19 times. We’ve been saying for years that specialist palliative care can’t just be ‘valiantly’ by the clinical bedside, riding to the rescue of a select few, but must focus far more on teaching and learning with generalist providers. Most palliative care is prob given by district nurses and hospital juniors. They are hungry for more information, and we need to give it to them, not store it behind password protected websites or pay-walled journal articles. Could we have done this in the year 2000? I doubt it. Times are hard and spare energy is limited but we’d make a plea for just a few things:

  1. Use sensible guidance from trusted, evidence-based sources:
  2. Plan ahead for your own mortality (and then file and forget) – everyone should consider a will and a lasting power of attorney with an optional advance decision to refuse treatment and some method of recording and storing this. Many websites exist https://compassionindying.org.uk/ or https://app.mywishes.co.uk/login to name just two.
  3. Help the cause by campaigning and pestering your MP to ensure palliative and end of life care is universally funded via the NHS. Recognising when someone is in the last year of their life and supporting them with this can be difficult, but shifts the focus from acute and impending death and allows people a better chance to plan for living and dying well (and fits with the General Medical Council’s ethical guidance https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/treatment-and-care-towards-the-end-of-life ). Resourcing this throughout the NHS would move the debate towards where and how you want to live your life, rather than focusing on what to do (or not do) when someone inevitably lands in hospital. There is a bill in the house of Lords https://hansard.parliament.uk/lords/2019-06-14/debates/42F5A25C-76C0-4542-B8CA-E3625E2C096A/AccessToPalliativeCareBill that we hope will become law –universal availability of palliative care!

Maybe you will hear my “drums echoing tonight”, as I keep banging away for good palliative and end-of-life care. This is not meant to be flippant or gimmicky, nor an ethical or philosophical argument – that is not my focus. We should capitalise on the excellent structures of teamwork and collaboration we’ve created in palliative care settings, and make sure that when this pandemic passes we don’t forget the role we all have to play. This is not solely the duty of palliative medicine. We all need to take responsibility for our own mortality and to once and for all fund what we need in order to die better.

It’s gonna take a lot to drag me away from you –
There’s nothing that a hundred (wo)men or more could ever do…

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