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Like many other hon. Members, I have been through the experience of losing a much loved relative in the sometimes undignified setting of a hospital ward. So my motivation in proposing this Bill is to secure a better quality of life for the final days of peoples natural lives.
The Bill aims to confer on patients a right to choose where to receive end-of-life care. I want to make it clear at the outset that palliative care should be understood as palliating all types of advanced, progressive and incurable conditions, and not just cancer. The well respected Birmingham cardiologist, James Beattie, came to see me to impress on me the inadequate nature of the provision for his patients with heart failure. That includes those who have undergone a transplant and those who have chosen not to undergo a transplant, who are often seen as not needing palliative care.
I also pay tribute to the work of Dr. Keri Thomas, a GP who decided to specialise in palliative care through her own experience as a GP and realising that more could be done for her patients. She has been responsible for drawing up the gold standard framework for palliative care, which all mainstream parties now accept as something that should be integral to the health service that we provide. However, the provision of palliative care to that standard is still patchy.
The Bill is necessary for several reasons. First, palliative care provision is likely to affect most people in the country. Secondly, as I have said, the commissioning and provision of end-of-life care services is still patchy.
Palliative care depends heavily on the voluntary sector. It is provided in all settings across all sectors by multi-professional teams. Co-ordinating those teams is crucial, and I believe that it requires this legislative pressure.
Palliative care has been on the parliamentary agenda for a number of years. Hon. Members introduced private Members Bills on the subject in 2005 and 2006 and Baroness Finlay of Llandaff presented a private Members Bill in the other place in 2007. The right hon. Member for Birkenhead (Mr. Field) has consistently raised the issue of end-of-life care, and although he is unable to be with us today, all hon. Members know how strongly he feels on the subject. He recently articulated those feelings in an Adjournment debate in Westminster Hall, in which he most generously shared part of the very limited time available with me.
My own interest in this subject has been fuelled by the work of the Leveson centre for the study of ageing, spirituality and social policy in my constituency. Dr. James Woodward, who was until recently the director of that research facility, has written thoughtful and original papers on the subject of how we treat those who are nearing death.
Research carried out by the Marie Curie Cancer Care charity shows that the majority of people with a terminal illness want to die at home, yet only one in five achieve that. There were 503,000 deaths in England and Wales in 2006 and 290,000 of those took place in hospital. Those are the most recently available statistics.
Mr. Oliver Letwin (West Dorset) (Con): Does my hon. Friend recognise that palliative care is not only about the elderly as they approach death, but about children? The work of childrens hospices in my area shows just how incredibly important palliative care can be for children nearing death, and it shows how much those hospices can provide to avoid those children being hospitalised at the end of their lives.
Mrs. Spelman: I thank my right hon. Friend for that intervention. The untimely death of a younger person or younger member of the family is always difficult for parents who outlive their children and for other members of the family. We all have constituents who have been deeply grateful for the existence of specialised childrens hospices and the specialised palliative care that they offer. I am sure that my hon. Friend, too, shares my concern about the security of funding for childrens hospices, which I shall come on to later in my speech.
It is stating the obvious to say that we only die once, but it is essential that end-of-life care is provided consistently and to a high standard for all. Although it is very expensive to keep a patient in an acute hospital bed, there is still no adequate lever to enable the funding to follow a patient out of hospital and into the community when they go back home, enter a hospice or return to the care home from which they emanated before their admission to hospital. My Bill aims to ensure that the money follows the patient and is not tied to the bed.
As I am sure is the case for many of my hon. Friends, countless constituents come to my surgeries to tell of the distress caused by inflexible care provision at the end of the life of a loved one. I should explain that the lady whom I am about to mention is content for me raise her case in the House. Very recently, Mrs. Anita Gee of Marston Green came to see me. Her husband, Malcolm, died from a terminal illness and was able to spend his last days at home with his wife. Sadly, the care package that had been promised on his discharge from hospital never arrived, and Mrs. Gee was left to struggle on her own. To make matters worse, she received a bill in the post from the council a short time after her husbands death, charging her for the care that he never received. She has stated:
Its an extremely vulnerable time in your life. Im usually on top of things but my brain just stopped. There needs to be something in place so that you dont have to scrabble around making phone calls to ensure your loved one receives the care they need.
That is a poignant reminder to us all of the shortcomings in the present situation. Mrs. Gees dearest wish is that other families do not have to experience what she did. In raising her case, she hopes that the situation can be improved. I, too, hope that it can be improved not only for my constituents, but for the constituents of all hon. Members.
Surely we are not a country where bureaucracy and pragmatism prosper in the place of flexibility and deep concern for the wishes of individuals. Many terminally ill patients find themselves in a care home setting. Funding of places in care is a vexed issue that can affect the ability of the care home to fulfil the wish of residents to end their days in the place that has become home for them. All too often, through inadequate funding or lack of training, a care home has to get a resident admitted to hospital to ensure that the residents medical needs are, in their view, better met.
Most residents and their families are unaware that in moving between a care home and a hospital, they make a perilous journey between two Government Departments, whose funding streams are quite different. Many care homes are dependent on local authority funding, which often needs to be topped up by family members to provide a standard of care regarded as acceptable. There is a real crisis in adult social care provision. Costs are increasing at the rate of 6 per cent. per annum, but local authorities receive an average grant increase of 2 per cent. per annum. That needs resolving if care home residents are to secure their wish to receive palliative care in that setting.
The Bill does not extend to Scotland, but the Scottish Commission for the Regulation of Care commissioned a report on the quality of palliative care in care homes, which highlights a number of the issues. Not least of those issues is the fact that 43 per cent. of residents did not have their palliative care needs met. I would be very interested to know the comparable figures for England and Wales; perhaps the Government will make them available. It is good practice for care home managers to discuss with a resident and their family preferences for end-of-life care before the crisis, but it can then be a great disappointment to the resident and the family if expectations so raised cannot be met.
I am not talking about unachievable ideals when I state that every patient should be able to choose where to receive end-of-life care. Marie Curie Cancer Care had a delivering choice programme, which ran from September 2004 to September 2008 in Lincolnshire. That important pilot provided a package of solutions to increase the number of people who achieve their wish not to die in an acute care setting. A palliative care co-ordination centre, discharge community link nurses and a community-based rapid response team were set up. There was also training for health care professionals in end-of-life care, and greater support for carers to combat the main problems in the system that keep patients in hospital. A Kings Fund report concluded that
the project in Lincolnshire has significantly increased the proportion of deaths at home and decreased the proportion of deaths in hospital, while keeping the overall combined cost of acute and community care stable for patients with cancer receiving palliative care in the last eight weeks of life.
During this pilot, the percentage of people who achieved their wish to die at home rose from 19 per cent. in 2005-06 to 42 per cent. in 2006-07, so the dream of making every death dignified is achievable, if the money follows the patient to where they want to receive palliative care. Many of those involved in palliative care have pointed out that the fact that Jade Goody managed to achieve the death at home that she wanted has raised awareness that that is achievable.
care given with the intention of improving the quality of life of persons with a terminal illness,
with an awareness not only of a persons physical needs, but of their psychological, social and spiritual needs. Palliative care is most commonly provided in hospices. There are 153 charitable hospices in England, six of which are run by Marie Curie and six by Sue Ryder Care. In addition, there are 36 NHS hospices.
As hospices are generally the place where palliative care is provided at a consistently high standard, I want to discuss their survival in the current economic climate. In a survey carried out by Help the Hospices in January 2009, only 2 per cent. of responding hospices said that they were not worried about the financial situation.
Another constituent of mine, Mr. William Marjurey, wrote to me last month to express his concern that the Acorns childrens hospice in Birmingham is experiencing severe financial difficulties. That hospice published a report in January this year entitled, Surviving the Recession, to combat the very real threat of the financial crisis. On average, hospices receive only 30 per cent. of their funding from statutory sources. That makes the huge drop in cash donationsdown 49 per cent.a very worrying trend. A further 16 per cent. of hospices said that they were considering closing or reducing their services.
If my Bill were enacted and the money could genuinely follow the patient from an acute care setting back to a hospice where they chose to spend their final days, this would undoubtedly help our hospices through the present difficult economic climate. Such worrying figures highlight the lack of adequate Government funding for the hospice sector. The end-of-life care strategy, which I welcome, promised that
any new services which are agreed as part of a local strategy should be fully funded from statutory sources,
Sue Ryder Care, a leading third sector provider of specialist palliative care and long-term neurological care in the UK, raises funds voluntarily to provide extra services, such as a bereavement centre, and it would ask health care commissioners to pay the true cost of the care that they choose to purchase. I was dismayed to learn, for example, that my local Marie Curie hospice, Warren Pearl, is receiving bills, which it simply cannot meet, for MRI scans for patients in its care from the local NHS trust.
The current palliative care force is equivalent to just 5,233 full-time nurses and 208 doctors. With the annual number of deaths forecast to rise from 503,000 in 2006 to 586,000 by 2030, this number of trained professionals is clearly not adequate to meet the need. In the west midlands, we have struggled, even at the level of specialist provision, to find a pain consultant for a population the size of Denmarks. Dr. Mark Taubert, a palliative care registrar in south Wales, who has undertaken research in this area, has informed me that some out-of-hours GPs fear palliative care issues and often feel out of their depth.
Without adequate training for all health care professionals, access to palliative care for all terminally ill patients will simply never be possible. Across-the-board training is required for the medical profession, professions allied to medicine and those involved in social care, because no one can be sure when they will be the one who will be accountable for a dying patient. The wrong words can stick like a cracked record in the minds of grieving relatives for years afterwards, not to speak of the hurt that the patient may take to the grave. That situation can be avoided by giving adequate end-of-life-care training across the whole spectrum of those helping someone through to the last days of their life.
It is training in not only delivering palliative care but talking about death that is required. This is a subject on which I know that the right hon. Member for Birkenhead feels strongly. Patients can make an informed choice only if they are themselves informed clearly and sensitively about their prognosis. Death is an area that our death-defying society would happily choose to ignore or brush under the carpet. It has become clinical and awkward to discuss, which does not help to achieve the aim of enabling every person to choose where they die. I welcome the General Medical Councils plan to publish guidance entitled, End of Life treatment and care: Good practice in decision-making, consultation on which is under way.
The NHS is there to improve our health and well-being...and when we cannot fully recover, to stay as well as we can to the end of our lives.
A shift in our thinking about death and care of the dying is required. The social, health and family affairs committee of the Council of Europe published a report in November 2008 on palliative care, which states that the protection of fundamental rights is a Government task and should not be left to the pushing and pulling of pressure group politics.
I hope that in introducing the Bill discussion will not be unduly guided away from the matter in hand towards the idea held by some that it is our right to choose not only where to receive palliative care but when life should be ended. I want the House to concentrate on how to provide dignified end-of-life care, so that people do not feel that they have to resort to ending their life prematurely. I firmly commend the palliative care charities, such as Macmillan, Marie Curie and Sue Ryder Care, and the many independent hospices that are working through the recession to deliver an invaluable service to their community. I commend the Bill to the House.
Dr. John Pugh (Southport) (LD): I congratulate the hon. Member for Meriden (Mrs. Spelman) on bringing forward a Bill on this important and entirely relevant topic. I support passionately palliative care and, like her, I have profound doubts about euthanasia. To some extent, successful palliative care gets the Government and the nation off the hook in the euthanasia debate, because one of the strongest arguments for euthanasia is the avoidance of unbearable and unnecessary pain, and without good palliative care models that simply is not possible. Where there are good models, it may be possible.
The reality is that we all die and most of us will die undergoing some sort of medical treatment, and there is normally a ready equation of medical treatment with cure. Doctors and hospitals are people and institutions that fix us; that is how we usually look at the matter. However, it is a sad truth that most people die in hospital and it is a truth that, by and large, hospitals seek to avoid and to disguise. They avoid acknowledging that people die, and people die on wards opposite people who may well get better.
I spent a short period as a hospital porter, and one chore that I had to do from time to time was to remove people who had died from the wards. It was always
interesting to see how they were moved closer and closer to the door and then to the side wards, and that other patients were told that they had been moved somewhere else. It was never actually explained that they had been moved on to the mortuary, because that obviously had a bad effect on the morale of other patients, if nothing else.
Hospices, however, are predicated on the opposite assumptionthat people die and can, in theory, die well. When someone is in imminent prospect of dying, the Bill tries to give them a right to quality palliative care. That is what the Bill is fundamentally about, and, having read it, I presume that the model is to provide state funding for it and to make available a type of care that is appropriate to, or in line with, the patients will. That, as such, is completely admirable, and I do not have a problem with the objective. There are some problems, however, which I shall highlight, and in summing up perhaps the hon. Member for Meriden can address my concerns.
First, candidates for palliative care are not always as easily identifiable as we might think. Terminal cancer patients with metastases, secondaries and so on are fairly obvious candidates, but what about the elderly and the infirm? On a hospital ward, there can be genuine differences between relatives, medics and individuals as to whether they are on a short, irreversible journey to death or have a faint prospect of recovery. There is often an unwillingness on either siderelatives and medicsto recognise that there is a case for palliative care.
Secondly, it is not clear whether the Bill has effectively dealt with, thought through or addressed another question: who would make the choice when, as in some cases, the patient is barely conscious and incapable of making the choice themselves? Does their right transfer to relatives and, if so, under what circumstances? There are, therefore, two grey areas: who qualifies; and who chooses in cases when choice is not a realistic concept that can be applied to the condition of an individual patient who may be slipping in and out of a comaor in and out of consciousness, anyway.
I am surprised to raise this, my third problem. What I ordinarily understand by palliative care is making a patient comfortable, enabling autonomy so that they can arrange their affairs without being distracted by pain, and alleviating pain and depression. Those are services that carers and medics are used to delivering and can deliver, but perhaps do not deliver as well as they should at times; none the less, such services are within their capacity.
Included in the Bills definition of palliative care, however, is spiritual help, and I have two problems with that. First, from the left field, I should hope that spiritual help is more than, and possibly different from, palliative care, because they are not the same thing. Secondly, there may be some doubt about the capacity of the national health service, a local authority or whoever to fund or provide spiritual help, enlightenment and so on, and the desirability of their doing so. I totally accept the model of the hospital chaplain, but the hon. Lady seeks to put in place much broader arrangements, so I simply question whether the state would be prepared to fund every action, counsel and pre-funerary right of a persons
religion in all circumstanceswhether it might not create difficulties and some doubt about whether that was appropriate for a public body.
I say that as someone who believes that such activity is an integral part of a good death, who sympathises with the laudable emphasis on psychological, social and spiritual help and who applauds the Bills objective. The Bill is about the good deathabout making death as good as it can beand ascribing the state a role in achieving it. That is entirely laudable, but the issue for me is whether it is within the states competence.
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