There has been a great deal of press interest recently in the Liverpool Care Pathway for the dying patient (LCP). It has been described in more colourful language, which I will return to later, but I should start out by explaining what it is – and just as importantly what it isn’t.
The LCP was developed in the late 1990s by a hospital in Liverpool and a local Marie Curie hospice. The aim was to bring high-quality hospice care for cancer patients to hospital settings. Later, this was expanded to non-cancer patients and has been adopted by a large number of hospitals throughout the NHS and other countries.
Why was (and is) this necessary? Modern hospice care emerged in the 1960s out of a desire to improve the experience of dying for terminally-ill patients. Hospitals are traditionally very good at delivering curative care, but do less well at caring for people whose greatest need is to be as pain-free and as comfortable as possible, and to have the reassurance that their families are supported to prepare and come to terms with a loved-one passing away.
The reality today is that the majority of people are in hospital when they die. Though the circumstances may vary – for example they may have been recently admitted as an emergency, or they were being treated for an illness that they may not recover from – past reports have shown that poor experiences can be very similar.
These poor experiences tend to arise because their healthcare team has not identified that they may die in the next hours or days; their care is not being planned appropriately; families are not provided with emotional, spiritual and practical support. Resolving these issues can even mean someone doesn’t need to be in hospital at all, allowing them to die at home which is frequently preferred.
The LCP sets out to support hospitals to address such issues. It describes well-tested best practice around the care of dying patients and encourages hospitals to improve their wider work and training in end of life care.
What LCP doesn’t do
What the LCP does not do is give hospitals a license to hasten death. It does not recommend withholding food and water, and putting someone on the LCP is not irreversible. Patients should be reviewed every 4 hours and fully re-assessed every 3 days or in response to a number of triggers.
The LCP explicitly says that families and carers should be fully involved in any decisions around a person’s care.
Age UK firmly believes that where the LCP is properly implemented, it provides some of the highest standards of end of life care. However, we are concerned that a number of people have reported inappropriate use of the LCP, or care that does not live up the standards it describes.
In fact, many of the issues being reported fall within the poor practice described earlier that the LCP set out to resolve. One of the more distressing examples that keeps emerging is families only finding out that their relative is on the LCP after they have died. This shouldn’t happen under the LCP and it certainly shouldn’t happen in a compassionate NHS.
No quick fix
It is important to recognise that the LCP isn’t a quick fix. There are deep issues with how health services care for people at the end of life, and we hope that any light shone on the use of the LCP also brings out some of the more endemic failures around delivering well-planned, dignified care for older people at any stage of life.
Our work with NHS Confederation and the Local Government Association on a commission looking at dignity in care mirrors many of the complaints we are hearing around the improper use of the LCP. It would be naïve to believe the issues are not linked.
Talking about death and dying is extremely difficult and it doesn’t necessarily get any easier if you are a doctor or nurse. Unhelpful language such as “death pathway” or describing best practice incentives as “financial rewards” for ending life do not advance the debate.
While we must recognise and investigate the very real issues raised by such media reporting, we must not be frightened into thinking that good end of life care is avoidable or unnecessary. The need for it is inevitable and for it to be good is vital.
Any older person or those caring for them who needs further information about resolving problems with NHS services can contact Age UK’s freephone advice line on 0800 169 6565