Whatever the result of the election, and whatever promises were made, we are all still going to die. Three million UK citizens die during a five year Parliament, and millions more are bereaved. Better palliative care is one area where the NHS and social care system could make huge improvements in compassionate care and make considerable financial savings. 50 per cent of deaths are in hospital, yet fewer than 5 per cent of people say they want to die in hospital. Hospital costs at the end of life can be more than five times the cost of social care in the community, yet fewer than one in ten Clinical Commissioning Groups commission dedicated nurse-staffed palliative support, advice and co-ordination for dying people, their families and carers around the clock.
Unsurprisingly, there are significant variations in the quality of care that people experience depending on where they are, what services are available and what conversations they’ve had about dying. Kate Granger is an inspirational doctor with terminal cancer. She works with elderly patients and has this advice on death planning. ‘The most important first decision is “‘where?”’ Preferred place of death is rarely achieved in the UK and I think that’s because we don’t plan properly. It takes a lot of effort and preparation to die at home successfully. I personally think if it is someone’s wish to die at home and they have been diagnosed with an incurable condition, the planning for that event needs to start then. Patients and families need early conversations with health and social care professionals about what support and resources are available so that expectations are not dashed. Anticipatory medicines need to be in the house long before the final crisis.’
A death plan, like organ donation, is far more useful if you tell everyone. Anyone who might possibly find you on the floor one day needs to know your wishes. If you don’t want to be resuscitated, ask your GP to counter sign an official Do Not Resuscitate form and have on display so anyone coming to your aid can see it. The front of the fridge is a good place. If you don’t have it on display, you’re may be transferred to hospital for intensive treatment rather than cared for in your home.
Most palliative care is given by carers, community and hospice nurses but it’s also important that a doctor sees a patient who is terminally ill at least once a fortnight. As one Eye reader observed: ‘Our father died recently at the age of 90, after a being in bed for a month at home. The district nurse attended from the start and emphasised immediately that this was a case of “end of life care”. The care provided during this last month was excellent. My mother and my four attended regularly throughout this period, together with the various district nurses, day carers and night carers.
Eventually swallowing became difficult for my father and the district nurse fitted a morphine syringe pump. We were told that death was likely to follow within days, which duly occurred. Despite this being the most anticipated death possible, we were amazed to be advised by the GP certifying death, that because our GP had not attended in the previous two weeks, he was obliged to inform the police of a possible suspicious death.
The police turned up, we were questioned as suspects and the body inspected for evidence. The policewoman told me that this was a common occurrence for anticipated deaths, and it also happened to our neighbour. The body was then taken to the coroner’s mortuary, where eventually after a delay of several days, it was released to the undertakers. This episode caused unnecessary distress to my mother and I, and wasted the police and the coroner’s time.’
GPs are not obliged to visit a terminally ill patient every 2 weeks, and if a patient dies having not been seen by a doctor in that time it can usually be sorted out by a phone conversation with the coroner, without needing a post mortem. However, as this story shows, this is not always the case. MD has just experienced superb NHS end of life care for a relative who died in Sherston, Wiltshire – compassionate, collaborative and competent. Thank you. However, many terminally ill patients cannot get fast and free social care or 24/7 advice and support. And coordination between different services can be very disjointed. Dying, death and bereavement are part of everyone’s life. It’s time they got the attention and support they deserve.
There is more advice on planning your death and improving your NHS care in Staying Alive