Health: End of Life

Lord Davies of Stamford Excerpts

Thursday 12th December 2013 Lords Chamber

[Lord Davies of Stamford (Lab)]

My Lords, the whole House ought to be very grateful to the noble Lord, Lord Dubs, for giving us this important and necessary opportunity to discuss this matter, although of course we do not have long enough to do it real justice.

At the heart of the debate there is, unfortunately, an illusion or a self-deception: the suggestion that under the present regime the medical profession does not get involved in determining the timing or circumstances of the death of its patients. In fact, as we all know, for a number of generations it has been pretty widespread practice for doctors who have a patient who is in distress right at the end of life to accelerate the process. One doctor put it to me as, “helping the patient on his way”, generally by administering a lethal dose of an opiate or perhaps a barbiturate. This is not talked about because of course it is against the law, so there is a great deal of hypocrisy here, but we should not have any illusion about the truth.

More frequently in recent years, the patient has been referred to a hospice and there a clinical decision is taken steadily to withdraw the necessary means of life support: resuscitation, ventilation, antibiotics and dialysis will be denied or withheld. In the case of someone who was very close to me, liquids were denied. The only thing that was administered was a sufficient amount of opiate to keep the poor patient comatose, presumably on the grounds that if she was killed by an overdose of the opiate that would be against the law, but if she was killed by dehydration that would not be against the law. She actually took two weeks to die. I cannot think of a more cruel fate.

I support the Bill of the noble and learned Lord, Lord Falconer, for three reasons. First, it would liberate the patient and give the patient a choice; it would give the patient a vote in the important matter of his or her demise. Secondly, it would liberate the medical profession from these agonising dilemmas—the conflict between the law and the duty to do the best for the patient. The third reason goes to the heart of the responsibilities of this House. The law in this country—in any country worthy of the name of a country living under the rule of law—ought to be clear, unambiguous, respected and upheld. The law in this area is none of those things in this country. The law is cruel, anomalous and nobody takes it seriously. The previous Director of Public Prosecutions said that he would not prosecute in certain cases under this law, as has already been referred to.

In another area, jurisprudence has changed the law in respect of establishing the double-effect rule. No doubt the GMC will be producing guidance on what doctors can and cannot do, particularly as new pathways are brought in, and perhaps that guidance will be prayed in aid before the courts. The whole situation is completely unclear, unsatisfactory and, frankly, hypocritical. Nobody takes it seriously.

The law should not be made by the back door by the Director of Public Prosecutions. On a matter of fundamental principle it should not even be made by judges under jurisprudence. It certainly should not be made by professional associations producing guidance for their members. That is a completely disreputable way of producing the law. We in Parliament have abdicated our responsibility to ensure that we have a law that is clear, can be respected and can therefore be upheld. We must no longer abdicate this vital responsibility.

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[Baroness Jolly (LD)]

My Lords, I thank the noble Lord, Lord Dubs, for securing this debate. I fully appreciate his position on this issue, which is clearly personally heart and head-felt. I know that, as a member of the All Party Parliamentary Group on Choice at the End of Life, this is a subject in which he takes a great deal of interest.

I echo the words of the noble Lord, Lord Beecham. This is a well informed debate, and at times it has been very moving to hear personal stories from Members of your Lordships’ House. With a four-minute time constraint on speeches, noble Lords have focused their thoughts, and that has led to many powerful points being well made. Here, I should like to make special mention of the maiden speech of the right reverend Prelate the Bishop of Sheffield, which was sensitive, thoughtful and thought-provoking. I am sure that he will make a huge contribution to the work of your Lordships’ House.

This is an important debate on a highly emotive and complex issue. Death affects us all. First, I assure noble Lords that, as a Government, we are committed to improving quality and choice in end-of-life care. Today, many noble Lords have focused on assisted dying. As was highlighted by the noble Lord, Lord Dubs, and others, the Government believe that any change to the law in this emotive and contentious area is an issue of individual conscience and a matter for Parliament to decide rather than one for government policy.

The Assisted Dying Bill, introduced by the noble and learned Lord, Lord Falconer of Thoroton, seeks to legalise, in England and Wales, assisted suicide for terminally ill, mentally competent adults who are reasonably expected to die within six months and who have been ordinarily resident in England and Wales for at least 12 months. The Government will take a collective view on the noble and learned Lord’s Bill in order to respond to the debate on its specific provisions at, but not before, Second Reading. As things stand, however, no date has been set for the Second Reading of his Bill and today’s debate does not address it.

My noble friend Lord Taverne raised the question of the DPP’s role in prosecuting offences. Prosecutors must apply the two-stage test set out in the Code for Crown Prosecutors in cases of encouraging or assisting suicide and all other offences. The full code test has two stages: the evidential stage and the public interest stage. A case which does not pass the evidential stage must not proceed, no matter how serious or sensitive. Where there is sufficient evidence, prosecutors must then consider whether a prosecution is in the public interest.

The noble Lord, Lord Davies of Stamford, stated that the DPP has said that he will not prosecute those who encourage or assist suicide. The DPP’s policy is clear that it,

“does not in any way ‘decriminalise’ the offence of encouraging or assisting suicide”.

Indeed, it specifically says:

“Nothing in this policy can be taken to amount to an assurance that a person will be immune from prosecution if he or she does an act that encourages or assists the suicide or the attempted suicide of another person”.

[Lord Davies of Stamford]

I am grateful to the noble Baroness for giving way. Of course, in a four-minute speech I had to use some shorthand, but my essential point was that it was extremely undesirable in the interests of both the clarity of the law and in how our democracy works to have the law on such an important subject made by the back door—by DPP decisions or even by jurisprudence. Would the Minister like to comment on that remark?

[Baroness Jolly]

I take the noble Lord’s point. I am not a lawyer but I will certainly write to him to ensure that his point is answered. In a letter to all Members of this House I will make sure that they, too, hear the same response.

Noble Lords may be aware of the different ways in which to document decisions on end-of-life care. Many of the general public are not. One option is a health and welfare lasting power of attorney. It allows someone to give authorisation to the attorney to make decisions about health and care, including decisions on life-sustaining treatments. Another option is making an advance decision. This enables anyone aged 18 or older who has capacity to make a decision about their future care. They may wish to refuse a particular treatment or intervention in the future when they no longer have the capacity to make their wishes known. It is a way of making plans for the future. It is a legally binding way of being able to refuse a treatment or intervention. An advance decision can be made not to be resuscitated under certain conditions. An advance decision can be made to refuse all life-sustaining care, provided that certain conditions are met. The decision must be witnessed and made in writing. These advance decisions are legal mechanisms to help a person plan their care. Both advance decisions and lasting power of attorney exist in addition to the systems that clinicians use to record patients’ wishes for end-of-life care.

The noble Lord, Lord Dubs, said that there should be a positive duty to inform a patient of their rights. Healthcare professionals should proactively seek to communicate with their patients and where appropriate, the patients’ families to find out their needs and preferences, and to capture these in an advance care plan if the patient so wishes. Healthcare professionals should understand the Mental Capacity Act so that they can inform patients about these rights if the patient is willing. It would be inappropriate to compel healthcare professionals to force such information on people who do not want it.

The noble Baroness, Lady Meacher, suggested that it would make a lot of sense to ensure that advance decisions are stored so that they could be accessed at the right time. It is important that those making an advance decision should decide how best to record their decision to suit their individual circumstances. There are also practical issues in trying to rely on a central register to record wishes, such as ensuring that it is up to date and accurately reflects current issues and wishes. Even if a register was established and showed that an advance decision was in place, healthcare professionals would still be required to satisfy themselves that it was valid and applicable, and would have to seek information from other healthcare staff and close family to ensure wishes, so a register would not be solely relied on. The noble Baroness, Lady Meacher, also raised the point of whether NICE should issue guidance on the use of advance decisions. NICE is an independent body and anyone can suggest a topic to it through the topic selection procedure. These are then evaluated to decide the topics on which guidance will be developed.

The noble Baroness, Lady Hollins, asked what is being done about ensuring that we have the right palliative care services. She raised various points, and when I get to the body of my text I will address that subject. All patients should receive high quality and compassionate care in the last days and hours of their lives, and we know that choice is at the heart of this. The noble Baroness, Lady Murphy, highlighted two issues: legislative decisions and policy decisions. I will direct the rest of this speech to policy-related actions and decisions.

The mandate to the NHS was refreshed in November this year. We highlighted the importance of improving standards of care at the end of people’s lives as a priority for the NHS and an area in which we expect particular progress to be made. In response to a recommendation made by the NHS Future Forum, the Government updated the NHS constitution in March 2013 to make it clear that patients should be fully involved in all discussions and decisions about their health and healthcare, including end-of-life care.

I now want to set out further details on the work that we have planned for extending choice in end-of-life care. We recognise that dying well means people being able to exercise more choice in where they receive their care, and to have quality services delivered where and when they need them. We know that most people would prefer to be cared for and to die at home, in familiar surroundings, surrounded by friends and family. We know that currently more than 50% of people die in hospital, the place where they would least prefer to be. We want to make sure that services are set up to help people to die at home, with high quality end-of-life care for all those who need it. However, increasing choice is not an easy task that can be done overnight.

In Liberating the NHS: Greater Choice and Control, we set out our commitment to move towards offering more choice nationally to support preferences on how to have a good death. In light of this, we have been working with the National Council for Palliative Care to undertake a review, of when and how choice could be offered in end-of-life care. Noble Lords will be interested to know that a workshop involving all the key individuals and organisations in end-of-life care will take place early in the new year. It will discuss the key issues and barriers that the review will need to consider. In particular, a review will consider when such choices could feasibly be introduced, with the right services and support in place to deliver this. Our intention is that the review should be as comprehensive as possible, looking at all the issues in depth and involving all key stakeholders. We would therefore encourage and greatly appreciate your Lordships’ input. Any changes requiring legislation would be introduced using existing legislative powers. The outcome of the review will inform NHS England’s future approach to choice in end-of-life care.

The noble Lord, Lord Dubs, asked when we could expect proposals to replace the Liverpool care pathway. The work on a response to the independent review of the Liverpool care pathway is being led by the Leadership Alliance for the Care of Dying People. The alliance is currently engaging on draft outcomes and guiding principles that would underlie the care of people at the end of life in all settings. The system-wide responses will be published in the first part of 2014 after the engagement concludes. The right reverend Prelate the Bishop of Sheffield asked about the role of chaplaincy services. The College of Health Care Chaplains is represented on the alliance and will be part of the process of developing the final version of the outcomes and guiding principles. I endorse the comments made by the right reverend Prelate on the key role that chaplaincy services can play in end-of-life care.

Recent survey findings indicate that there is an increasing trend that people wish to die at home, and we cannot ignore that. The End of Life Care Strategy, published by the Department of Health in 2008, set out the ongoing ambition to support more people to die in their preferred location. Work is ongoing from NHS England—the leadership alliance—to refresh the strategy. This refresh will look at the strategy’s recommendations, including on patient choice, and build on them for the future direction of end-of-life care. NHS England is looking to complete this work early in 2014, which will inform its future approach. Following on from this, we know that one of the main barriers to people receiving the care they deserve is a lack of open discussion between health and social care staff. The noble Lord, Lord Dubs, spoke of the death taboo slowly receding, but in some cultures death is still considered part of life itself.

We know that after speaking to their loved ones about plans for end-of-life care, GPs are next on the list of people that patients most want to talk to. We also know that where GPs initiate conversation, nine out of 10 people are happy to continue with it. However, we recognise that some people would not wish to enter into conversations, either with their family or with health and social care staff. If this is their choice, we would expect healthcare staff to respect that.

All this is the background to the Find Your One Percent campaign. One per cent of people on a GP list will die each year. The purpose of the Find Your One Percent campaign is to help GPs make sure that people who may be approaching the end of their life have the chance to discuss and plan for their end-of-life care. The campaign is hosted by the Dying Matters coalition, working with Macmillan Cancer Support, the Royal College of General Practitioners and others to ensure that clinicians are provided with the information and, more importantly, the resources they need to support a good death.

The focus is on helping. We believe that GPs play an important role in helping patients to make choices that are right for them and to make sure that this happens. Guidance has been produced for GPs to help patients make informed choices. It is not compulsory for them to follow, nor is it about hitting government targets: it is about improving the quality of people’s experience at the end of life and ensuring that they receive the care they need, when they need it. GPs can help make sure that that happens by offering people the opportunity to prepare an end-of-life care plan. Care planning of this type is not a single event. Plans evolve as people’s conditions change or their preferences alter. This mechanism allows GPs to ensure that people get the treatment they want at the end of their lives, and have a chance to discuss this difficult topic and express their preferences.

Further, the quality and outcomes framework, a voluntary reward and incentive scheme for GP practices in England, currently has two dedicated indicators for palliative care. The framework encourages GPs to establish and maintain a register of all patients in need of palliative care and to have regular, multi-disciplinary case review meetings where all patients on the palliative care register are discussed. These indicators are being retained in the quality and outcomes framework for 2014-15.

In October 2013, NICE, the National Institute for Health and Care Excellence, announced that it is shortly to review its quality standard for end-of-life care for adults and the support guide for commissioners. This will provide further help to develop end-of-life care services and provide incentives for better conditions.

Many noble Lords have recognised the valuable role that hospices play in delivering end-of-life care services. The noble Lord, Lord Judd, spoke powerfully about a community’s sense of identity and ownership in their local hospice. Building on the success of the £40 million capital budget for hospices in 2010-11, which funded 123 projects in 116 hospices, the Government have provided a further capital budget for hospices of up to £60 million.

The independent Palliative Care Funding Review panel, set up by the Secretary of State for Health, was asked to recommend how a new per-patient funding system for adults and children should be developed. It reported in July 2011 and was recommended by the Government. As noble Lords will know, pilots were set up as a result of this and are currently gathering evidence. This evidence gathering will finish in March 2014. We have already stated our position: we see merit in removing the means test at the end of life, and this is being considered as part of the review. Noble Lords will be pleased to note that we have committed to introducing the new funding system by 2015-16, which is a year earlier than recommended by the review.

Before concluding, I thank those charities and hospices that do such wonderful work with patients at the end of their life, and with their friends and families after death to come to terms with their bereavement. In particular, Marie Curie, Sue Ryder and Macmillan Cancer Support have all been mentioned in today’s debate, but there are other smaller organisations.

I hope that I have been able to offer some reassurance that the Government are making progress on these complex and sensitive issues. If there are any questions that remain unanswered, I will write to all noble Lords who have taken part in this debate.