End of Life care is not usually regarded as a front page headline topic by the popular press, nor is it a frequent discussion point in cafes, pubs or bars. It is an important topic nonetheless, if only because it is the one area of healthcare which very nearly all of us will experience. Sudden death, from whatever cause, is not the usual way to die.
This lack of debate might be understandable if everyone who died did so in a quiet, caring, and capable environment at home or in hospice. In the right hands the well-evidenced Liverpool Care Pathway (LCP) helped a lot of people cared for by those trained in its use. NICE actually recommended it. However the fact is that hospitals are still the main place where people die and there have been horrific accounts of poor and insensitive care of those dying in hospital.
The abandonment of the Liverpool Care Pathway (LCP) a year ago shows us the nature of that problem. The review into the LCP led by Baroness Julia Neuberger was generally damning of hospital end of life care. A tick-box approach to the LCP de-personalised treatment, they were highly critical of the quality of communications around the dying person, and deeply critical of hospitals’ inability to respond to the needs of families and their loved ones, especially those dying at weekends or in the middle of the night.
“In the wrong hands,” they said, “the Liverpool Care Pathway was an excuse for poor quality care.” They went on “Generic protocols, as the LCP has come to be seen, intended to be applicable for all patients in the last hours or days of their lives, in any setting, are the wrong approach.”
The publication of guidance from the Leadership Alliance for the Care of Dying People followed quickly and set new standards. The Alliance was made up of 21 organisations including the Department of Health, NHS England, NICE, CQC, NIHR and key charities including representation from the Hospice movement. Their guidance is a direct response to the Neuberger review, accepts its recommendations and points to the supporting evidence base to guide local implementation. It confines itself to establishing strategic guiding principles, it does not replace the LCP. No-one following these principles and guidance will reproduce what is bad but they have to make up their own minds about the details of practice and focus that on the individual, not a protocol. The guidance emphasizes the need for individuality of care, giving proper respect to each person and their needs.
The guidance is extensively supported on the NHS Improving Quality website, with direct access to training information, so there is no excuse for any healthcare professional concerned with the care of dying patients not to have referred to it at the very least.
Now NICE is consulting on the draft of new Guidance for care at end of life. This will be authoritative. It is open for comments until the 9th September. At 266 pages its no lightweight and the supporting evidence is a much bigger tome. The group developing the Guidance was chaired by Professor Sam Ahmedzai from Sheffield University, an internationally respected palliative care clinician. If nothing else the list of 67 recommendations is worth reading to take in the breadth and depth involved in creating personalised care at end of life. They also point to four areas of clinical research priority which will hopefully be picked up in the near future.
One issue which affects research is that there is no clinical priority for end of life care research in the NIHR Clinical Research Network. It is a topic which is ignored in the way the Network has been structured. The 30 speciality topics mostly have a disease theme. In all probability the four end-of-life research priorities (and others which arise) will get researched through the cancer theme. The NCRI seems to be alone in clinical research in recognising Palliative Care with its own Clinical Studies Group (chaired by Professor Ahmedzai).
In addition to the clinical issues there is a need to better understand why so many people die in hospital when research shows they wish to die in their own homes. There have been numerous small studies, mostly focussed on one institution. There is no reason to doubt one conclusion that the communications problems and mechanics of transferring uninterrupted active care from a hospital to a GP, who relies on the support of multi-agency resources in the community, are dominant but there is a very real need to find ways of making it better.
There is also a need to find out what are the key measures which can evaluate performance. This may sound a bit callous. Maybe it is one of the characteristics of this topic that there are aspects which feel a bit insensitive. But it does affect all of us and I know that, when it comes to my time, I want to know that I am getting the best care there is.