The recent Care Quality Commission findings, revealing that 40 per cent of UK hospitals are failing to meet the expected standards for end-of-life care, highlight just how important it is that all hospitals commit to and ensure that any person faced with the inevitability of death is treated with the utmost dignity and respect.
It comes as no surprise to me that Alder Hey, Great Ormond Street, and Sheffield, all children's hospitals, have been deemed as 'outstanding'. These hospitals have incredible dedicated teams of doctors and nurses that are specialists in paediatric palliative care, and this is reflected in their rating. Of course, this is due to their clinicians being well trained, skilled and dedicated but it is also due to their service being recognised as needed and therefore commissioned. Teamwork is extremely important in these hospitals, as one single person cannot be there all the time to provide a child with round the clock care. Having good links with palliative care teams based in hospitals and hospices, for both children and adults, is essential for quality coordinated care.
The Liverpool Care Pathway, as Julia Neuberger, author of the 2013 report points out, was misused. One could argue this is because it gave staff the excuse not to listen to what people wanted, and did not prioritise communication. You can be the most skilled physician, surgeon, or nurse in the world, but if you can't communicate compassionately and thoughtfully you should question whether you should be doing the job. More worryingly, in this position you can actively cause harm - not just to patients but to their relatives too.
People die all the time, much as babies are born all the time. What lies at the centre of good palliative care is the ability to listen and shape treatment and care around the individual, thinking about their needs, not just their symptoms. Are they thirsty, in pain, sweaty, scared? Much is not rocket science, it's compassion, but boy do you want someone who does know the science of pharmacology and physiology when your symptoms are hard to manage.
People want to die where they feel safe. For some this is in hospital, for some this is home. Home does not necessarily mean that it will cost less, and a hospital death is not a failure - it is only a failure if it's not managed well or if someone doesn't want to be there. That said, it is no good making this an indicator of quality, as asking people where they want to die months in advance doesn't tend to give them a mechanism for them to change their minds.
Leadership, as Neuberger suggests, is essential, and the board of an organisation needs to influence the culture and be assured about the quality of care. They need to make decisions that facilitate good end-of-life care and they need to hold people to account. There is a parallel with child protection - it is everybody's responsibility and it needs a profile at every level of an organisation.
Knowing when someone is dying is key. Neuberger points out that a junior doctor may not have experienced this before, and I argue that we should change this. If a patient suffers a rare or particularly interesting disease, medical students will be asked to see and observe the patient to learn. So why aren't we also asking them to respectfully and considerately see people at the end of their lives?
So much of medicine is about what more we can do in terms of tests and interventions. But sometimes it's not just about recognising the advancement of death but knowing when to stop fighting it.
Good end-of-life care needs to be an aim on every ward, and of every nursing and medical team, no matter what their speciality. It is not just something that happens in hospices or care of the elderly wards. It is doing the basics of care brilliantly, and knowing when to ask for help.