End of Life Care

Helen Whately Excerpts

Wednesday 2nd March 2016 Commons Chamber

[Helen Whately (Faversham and Mid Kent) (Con)]

I welcome this debate, not least because end-of-life care, or death, is something we as a society tend to avoid talking about, and there are parallels with mental health. Another parallel is that, like mental health, this issue is too often overlooked in our healthcare system. Talking about it here is therefore a step in the right direction.

It is of course good to see that the UK ranks No. 1 in international studies, as other hon. Members have said, but we know that we as a society do not do end-of-life care well enough—in fact, too often we do it badly. One reason that many constituents wrote to me before the assisted dying debate to support assisted dying was that they lacked confidence in the system’s provision of end- of-life care and were not confident that they would have the chance of a good death. As many of us know, it is possible to have a good death, and that is what is experienced in many hospices, which do excellent work, as well as, sometimes, in hospitals and care homes.

Too few people die where they want to, quite apart from the quality of the experience they have. For example, only 6% of over-75s in Kent want to die in hospital, yet 40% actually die there. Some 86% want to die at home or in a hospice, but only 29% die in either of those places.

Every year about 500,000 people die in the UK. As the hon. Member for Heywood and Middleton (Liz McInnes) said, about one in five of them do not even receive palliative care. Those 500,000 people have family and friends who are affected by their death, so quality of death, on the basis of scale alone, should be a priority. In their final weeks and months, most people are highly dependent on the NHS, and there are frequent emergency hospital admissions for people towards the end of their life. Those hospital admissions account for 70% of health costs in their last three months of life. Unnecessary admissions to hospital are not only a bad experience for many individuals towards the end of their life, but expensive, and the NHS has scarce resources. That is another reason why it should be a priority to prevent people from dying in hospital when they do not want or need to. The question is whether it is yet a priority. The Public Administration Committee heard evidence that end-of-life care was still consistently overlooked across the NHS.

For the situation to improve, four things need to happen. There needs to be a focus on it from the very top of the NHS—from the leadership and from Government. There needs to be investment in capabilities to give people a better quality of death—not only capabilities of staff in terms of their skills, but in the technology that is needed. There needs to be better learning from what works; many places around the country, and internationally, do this well. There needs to be much greater transparency and measurement of where it is going well and where it is being done badly, and accountability on quality.

On the technology point, many people lack a plan for how they want to die, yet that that can make a real difference. In the absence of a plan, there is often a default response when something happens to somebody who is frail and possibly close to death: an ambulance is called, they are taken to A and E, and they end up in the acute ward of a hospital and may never leave. Only last week, I spoke to a local GP who was very frustrated about this happening to his patients. He has often discussed with them what they would like to happen if their end of life is approaching, and sometimes even written it down. However, too often, in the moment of crisis, what he has written down makes no difference at all, because the people on the scene at the time—for instance, if an ambulance is called out of hours—do not have access to the plan that he has discussed with the patient.

That said, the GP was optimistic that this could change, because his CCG, NHS West Kent, is implementing an electronic care broadcasting system whereby other doctors, A and E and the ambulance staff would be able to access what the patient had said they wanted to happen in that situation. There is strong evidence of the benefits of such systems, which means that far more people are able to die in their preferred place. In some cases, this has resulted in the number of people getting to die in their preferred place of death rising to about 80%, and brought hospital deaths down from the average of about 53% across the country to below 40%, or even as low as 4%. Implementing such systems should therefore be a priority, as should learning from where they are going well.

Transparency and monitoring are a crucial part of improving end-of-life care. We need more transparency. We need to know about the variability that has been mentioned. As MPs, we need to know how good the end-of-life care is for our constituents. I welcome the CQC’s increased attention to end-of-life care, but there are yawning gaps in reporting on quality. There is great inconsistency between what is reported in different areas and different institutions, and between CCGs, and relatively little is reported consistently at a national level. There needs to be a much greater focus on reporting. That was one of the recommendations in the Select Committee’s report, and NHS IQ—Improving Quality—looked at it before being transferred into NHS England. I would be grateful if my hon. Friend the Minister updated us on what is going on with regard to transparency on quality of end-of-life care, as I know that this Government do understand the importance of transparency.

All of us here today know that end-of-life care must improve; that this affects hundreds of thousands of people every year; that improving it will require continued and greater leadership and focus from the very top of the NHS and from Government; that investment will be required in capabilities and in technology, and should also lead to some cost savings; that there should be greater transparency, monitoring and accountability in respect of quality; and that there should be more, and more effective, sharing of the success stories and evidence of what works. Those things would mean that end-of -life care really was a priority for the health and care system, and that it should improve.