NHS: Death at Home

Lord Warner Excerpts

Thursday 8th November 2012 Lords Chamber

Asked by

[Lord Warner]

To ask Her Majesty’s Government what progress is being made to enable more NHS patients to die at home and whether they have plans to strengthen the NHS Constitution in this area.

[Lord Warner]

My Lords, I am glad to have this opportunity today to focus our attention on patient choice at the end of life. I would, of course, have preferred not to have it at the end of the parliamentary week.

Although I continue to be a staunch supporter of legislation on assisted dying, and will certainly support a Bill along the lines proposed by the commission chaired so ably by my noble and learned friend Lord Falconer, that is not my main purpose today. However, the right to assisted dying in this country should be part of the choice agenda for that minority of people who want it, are terminally ill and have mental capacity. We all like to exercise as much control and choice as possible over the way we lead our lives. As citizens, I believe we should be allowed also to exercise the maximum choice on the way we leave our lives. That is the issue I want to explore today.

Around half-a-million people die each year in England, two-thirds of them over 75. A century ago, most of us would have died in our own homes; today, most of us will die in hospital. Despite the findings of the Gomez report published in January this year showing an increase between 2004 and 2010 in the proportion of people dying at home, only 20.8 per cent of deaths took place at home. This is a lower proportion than the US, Canada and parts of Europe, such as the Netherlands. We also face the prospect of increasing numbers of people dying with more complex medical conditions which could, if we are not careful, push our healthcare system towards more people dying in institutions.

This Government, like the previous Government, deserve great credit for recognising the importance of patient involvement in decisions about their health and social care. I congratulate the Government on their commitment to the principle of “no decision about me without me” and on continuing the end-of-life strategy published by Labour in 2008. That document was a major political initiative in the sense of opening up the issue of death and dying for public debate. Today I wish to explore, in a non-partisan way, the progress made since 2008. In doing so, I will draw on the extensive, 73-page 4th annual report on the end-of-life strategy published by the Department of Health last month, together with the excellent briefings that many of us have received from Marie Curie, the Alzheimer’s Society, Sue Ryder, Dignity in Dying and others.

It is clear that considerable progress has been made on many of the issues identified for attention in the 2008 end-of-life strategy. There have been many local initiatives, some of which are described in last month’s annual report. I do not have time to go into detail on these developments but they increase our understanding of how we can improve the prospects of a good death, with dignity, respect, relief of pain, a preference for familiar surroundings and the company of close family and friends, when we want it. These considerations are being better addressed as a result of the 2008 strategy and all the work that has been done since then. However, we still have a long way to go.

There remains the difficult issue of with health professionals over striving to keep alive people who simply want to let go of life, without pain, in a place of safety and familiarity and at a time of their choosing. That can sometimes produce a difference of view between the patient and the relatives, as well as with professionals. In these situations, I regard the wishes of the individual person dying as paramount. It is their views that should take precedence over whatever professionals and families think. That informs the rest of what I have to say.

I have an uneasy feeling that this issue has some bearing on the current strife over the Liverpool care pathway. I will be clear: I am a strong supporter of the pathway. Properly applied by trained personnel, it does not hasten death but ensures that the right type of care is available in the last days or hours of life. It does not preclude the use of clinically assisted nutrition or hydration. Frankly, if 22 highly respected patient and professional organisations, including three colleges, can publicly sign a strong endorsement of the pathway, I know which side of the argument I am on; and it is not that of the Daily Mail.

Turning to the place of death, I have an opportunity to pay tribute to my favourite medical tsar, Professor Sir Mike Richards, who, as national clinical director for cancer and end-of-life care, has done so much to take forward the end-of-life strategy. In his excellent farewell letter, in the fourth annual report, Professor Richards identifies:

“Deaths in usual place of residence”,

as,

“the main marker of progress for the Strategy”.

He also says that:

“While this does not necessarily capture individual patient choice it is nonetheless a good proxy”.

He reported that, nationally, by April 2012, 42.4% of people are now dying at home or in a care home. This is an improvement from about 38% four years ago, which is an improvement of about 1% a year. On present trends, it will take until at least the end of the decade before half of deaths occur in the place of usual residence.

This improvement and this national figure conceal considerable regional variations. If you live in the south-west, with 48% of deaths occurring in the place of usual residence, you have more choice than in London, where only 35% of deaths take place there. The Marie Curie briefing cites the Office for National Statistics data for 2008 to 2010, which across the UK show 55% of people dying in hospital. However, there is a huge variation from 39% to 70% between local authority areas for the number of people dying in hospital. That is a huge range. This kind of regional and local variation is totally unacceptable and strongly suggests that there is considerable variation in professional and organisational practice and attitudes to allowing people to die in their place of choice.

Ministers and officials are to be congratulated on securing better measurement in this area, but they now have to confront the fruits of their labours—after all we have a National Health Service. It is not just a matter of fairness and patient choice. There is also a matter of cost, which, as Sir Humphrey Appleby would have said, is, “Not an inconsiderable consideration, Minister”. Again, Marie Curie has performed a public service with its publication on understanding the cost of end-of-life care in different settings, which suggests that a week of palliative care in the community at the end of life costs about £1,000 a week, whereas a week of hospital in-patient specialist palliative care costs virtually £3,000. I am not suggesting that costs should be the only consideration, but we need to reflect on these figures because they suggest that we could offer more choice on dying at home and also save the public purse.

What is to be done? I have three suggestions to help speed up people’s right to have their preferences on where they die implemented, although I make it clear that I am not trying to dragoon people into dying at home and recognise some of the concerns that Marie Curie has expressed about people’s views changing. My first suggestion is to bring end-of-life choice into the Secretary of State’s mandate to the NHS Commissioning Board, as many parliamentarians have suggested.

Secondly, it is no good just rewriting the NHS constitution to give people more rights. The Government need to be bolder. The right should be written into the constitution clearly, in order to deal with the postcode lottery in patient experience and professional practice around the country. Thirdly, we should consider going further and provide citizens with a statutory right to exercise such a right, either in government legislation or in a Private Member’s Bill—an option I would certainly contemplate bringing forward. I look forward to hearing other peoples’ views in this debate, including the Minister’s, and I hope I have given him something to chew on.