Five years ago, the James Lind Alliance carried out research using their Priority Setting Partnership protocol to identify the most important national concerns about palliative and end-of-life (EOL) care. Top of their list was the question: ‘What are the best ways of providing palliative care outside working hours to avoid crises and help patients stay in their place of choice?’ Since then, the Marie Curie organisation has instigated several investigations, with some completed and some still ongoing. Findings so far show that in the last year of their lives, patients with known life-limiting illnesses can expect an average of four emergency admissions to hospital. The studies suggest that improvements in out-of-hours (OOH) access are reducing this statistic.

In the current pandemic, we need to ask this question again. It is likely that many people are being caught unawares, needing to decide at the last minute where they want to be looked after, with the additional complications of infection control and uncertainty about what support they might need. Any provision for Covid care in the home would be undermined, not only by lack of awareness of its availability, but also the inability to access it in an emergency, especially out of hours. And out of hours is, after all, two thirds of all hours!

I started working as a GP in the late 1970s when each practice was responsible for its own OOH calls and the practice number was diverted directly to the home landline. For ten years my wife and I, in a practice together with a third partner, were on call three out of five nights plus week-ends. Although this could be onerous, the majority of patients did not abuse the service and, in a small practice, it meant there was a depth of knowledge about each patient and their medical experience. Then came multi-practice rotas, co-operatives and finally the loss of OOH responsibility altogether. Gradually GPs had to adapt to picking up the pieces the next day rather than having a clear picture of what had gone on while the surgery was closed. The present default pathway for severe Covid-19 is to ring 111, be assessed by a paramedic, and then taken to hospital if medical support is needed. Resisting this pathway can be hard for those infirm and/or in acute distress, especially if 111 call-handlers or the paramedics argue forcefully against an express wish to stay at home.

There are some examples of good practice that have been adapted from systems set up before this pandemic, as highlighted on the NHS website; and we know of one hospice team in Essex that has succeeded in bringing about significant changes in only three months . These involve acute response teams which can be accessed at any time, usually using local diverts from 111 and 999. We are carrying out ongoing investigations to see how well these schemes are working in practice.

However the recent rapid review on primary care and community palliative care during pandemics on this website confirms that community palliative care planning for pandemics has not been prioritised. I personally know of one area where, although there is a dedicated Covid rapid response team, it currently does not have reliable access out of hours. I understand that for GP practices, there can be challenges in negotiating with 111 to divert their calls to a local number despite NHS guidance for GPs which states: ‘Integrated urgent care (IUC) providers operating outside core practice hours should … arrange ongoing management based on clinical need … using their existing processes for NHS 111.’

So what should I do if I think I might prefer to stay in my own bed with severe Covid-19? Firstly, I could contact my GP to discuss my situation and develop an advance care plan (a rapid review of advance care planning for Covid-19 is currently underway at the Centre for Evidence-Based Medicine (CEBM) and we will comment on it when it appears). One of the questions I’d need to consider would be what sort of oxygen therapy, if any, I’d be happy to accept, a complicated issue raised in our previous blog.

We could plan that if and when I first get ill, I would ring the surgery and perhaps my GP could arrange a test to confirm the diagnosis. The lag between displaying symptoms of C-19 and getting severely ill seems to be between five and twelve days, so this would be the opportunity to set things up in readiness. Given a positive diagnosis, equipment and drugs could be delivered to my home, and my carers could be trained to give medication safely. I’d hope that any unused drugs could be recycled for another patient, rather than wasted. I would also need to know how to access emergency support at any time of the day or night.

If my condition worsened, I would hope that a palliative care team could be mobilised to oversee my care. Interestingly, I’ve been informed by a GP whose practice in Bristol has involved the EOL care of thirty care home residents who died of Covid-19, that only one of them had significant symptoms, and that was agitation rather than breathlessness. A comment from a Marie Curie blog in the BMJ confirms that ‘… the deaths are often quick and comfortable’.  So perhaps less palliative care is needed at home than has been anticipated.  In a hospital setting, it seems that the broader spectrum of patients can result in more EOL distress.

I suspect that there are many who would choose to stay at home, if they knew it was an option they could trust. We are only at the end of the beginning of this pandemic. With no vaccine, we can expect most people to become infected sooner or later; and although, by social distancing and targeted isolation, we may be able to keep the number being admitted within capacity of the hospital service, we need to ensure that an alternative care pathway is available and well publicised countrywide, to avoid the risk of people dying without adequate support at home, or indeed being admitted to hospital against their wishes.

There are various surveys, both ongoing and in the planning stages, of GP experiences, of community palliative care, and of the bereavement experience of carers and health-care professionals; and when these are available, we will comment on them. In the meantime, please let us know what is available in your area, how easy it is to access, and how you feel about how things are going.