End of life – the facts behind the headlines
There’s good news and bad news this week on end of life care in hospitals. A new review by the Royal College of Physicians has found steady improvements in the quality of care in the last couple of years, but still some major gaps.
The closest many of my patients have come to seeing resuscitation when a patient’s heart stops is in the medical soaps. There’s an ominous ‘beeeeep’ as the patient’s monitor flatlines; a handsome emergency doctor runs out from stage left; he thumps the patient on the chest; they promptly sit up and ask for a cup of tea. The reality is much less pretty – and much less reliable. While everyone should know basic CPR, or cardiopulmonary resuscitation, it’s extremely rare for it to be successful in someone who’s terminally ill. And the process is the very opposite of the peaceful end so many people want. That’s why hospitals always consider whether it’s appropriate to start resuscitation if the heart stops. On the plus side, over 80% of families are now consulted when the hospital decides that the patient is not fit for resuscitation if the need arises. But that figure should be 100% - and there should always be a full discussion of what’s involved and why the hospital doesn’t think it’s appropriate.
But the report’s biggest concern is that so few hospitals have 24/7 access to palliative care doctors. Helping someone to have the end they want requires very different skills to ‘making people better’. Palliative care doctors and nurses have an amazing skill set. Watching them at work is like watching a master class in communication skills. But they also spend their lives honing their talents in helping to relieve suffering. Their raison d'être is summed up in the words of Dame Cicely Saunders, the founder of the hospice movement - "You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die." Death doesn’t recognise working hours, and better access to palliative care teams would go a long way to addressing many of the report’s concerns.
It may seem odd to be talking about ‘prevention being better than cure’ in the context of dying, but for many people it holds true. In the UK, about 70% of people would prefer to die at home, yet at least half of us die in hospital . Sometimes there’s no chance to plan – life-threatening illnesses do happen out of the blue. But many people succumb to long-term illnesses, including cancer, heart failure and chronic obstructive pulmonary disease (COPD). But over the years I’ve seen many patients who haven’t wanted to talk – or even think – about death. The trouble is, if you bury your head in the sand, nobody will know what you want – and there’s lots to consider. GPs like me work with palliative care teams every day to help keep our end-of-life patients at home if they want it. But to do that, we need to make sure the services, and the medicines they might need, are all set up and ready to be used before a crisis happens.
Maybe you think you’re much too young to have to worry about it – but do you know what your parents or your grandparents feel? It may seem awkward to bring up the conversation – but how much worse to find a loved one deprived of the end they want. It really is good to talk.