Page last updated at 11:42 GMT, Wednesday, 16 July 2008 12:42 UK

Promise to improve care for dying

By Nick Triggle
Health reporter, BBC News

Hands
Most people die in hospital despite wanting to stay at home

People are to be given more choice over where they die as part of a package of measures to improve care for the dying.

Ministers said the key to this will be the creation of rapid response nursing teams to help carers.

But England's first End of Life Care strategy also calls for more openness in talking about and planning for death.

Extra money is being provided, but experts said it was still a challenge to turn "fine words into action".

Campaigners have long been calling for more focus on what they see as a neglected area of the NHS.

For far too long, there has been a presumption that death should be at the convenience of the system
Paul Cann, of Help the Aged

About 500,000 people a year die in England mostly following a period of chronic illness such as heart disease, cancer or dementia.

Just one in five deaths happen at home despite two thirds of people saying that is where they would prefer to die.

By comparison, 58% of people die in hospital with many families complaining a lack of support and pain management leaves them with no other alternative.

The government aims to tackle this by setting up 24-hour on-call nurse teams across the country to help those caring for the dying at home to cope in times of crisis.

It is being largely modelled on a programme run by Marie Curie Cancer Care in six areas, which has doubled the number of people dying at home by offering support especially in the final weeks and days of life.

Training

Ministers also want to see training offered to health and social care professionals to help them assess the needs of families facing a death.

An extra 286m is being invested by 2011 to fulfil Labour's 2005 manifesto commitment to double funding in palliative care.

A specialist nurse on the range of end of life care that can be offered

But this will happen over a period when the NHS budget will have increased by nearly 50% anyway.

And the focus on palliative care ignores the general resources spent on looking after the dying, which suggests the extra 286m is not as large an increase as first seems.

For example, over 1bn a year is spent on district and community nursing. About 40% of their time is spent looking after the dying.

But Health Secretary Alan Johnson dismissed suggestions there was not enough money to achieve the aims, pointing out it was also about changing the way the system worked.

"People coming to the end of their lives and their loved ones deserve high quality, compassionate and dignified care on their own terms.

"This strategy will help it happen."

He also said he wanted to start a national debate to get people talking about death.

The strategy suggested a number of ways to encourage that, including getting funeral directors to hold open days and schools to start discussing it with pupils.

Paul Cann, from Help the Aged, said: "For far too long, there has been a presumption that death should be at the convenience of the system, as opposed to respecting the individual wishes of those who are approaching their final days."

But he added the challenge now was to turn "fine words into action".

And shadow health minister Stephen O'Brien said the government had ignored the "wonderful contribution" made by hospices.

England's strategy comes as Scotland is also working on its plans for end of life care.

Meanwhile, Wales has already produced guidance on the issue, but it is too early to tell if it has had a major impact.


Here is a selection of your comments:

My Mum passed away recently after a term of Cancer. When The MacMillan Cancer Nurses asked where she would prefer to be when she passed away, as it was inevitably close, she said at home. A day later she passed away in the comfort of her own home with all her family around her. She was not alone, she was in comfortable surroundings and she went very peacefully which I am truly grateful for. I believe that people should have the right to choose where they die and if possible, these requests should be respected. Dying at home is less clinical and more personal. I believe it makes it easier on the person to let go in the end.
Anonymous, York, North Yorkshire

I nursed my husband at home until his death in April this year, the doctors we were at had a gold star policy in place, this meant that all the hospitals, out of hour doctors, even the chemist that delivered drugs to us knew of the situation, and I have to say up until the last night of my husbands illness the services got it all right the last 18hours of his life was just the worst time - not because he was dieing that had been expected and the outcome of his illness had never been in question. But the system broke down and all the care went out the window, if I could do anything to stop this situation happening to anyone else, I would.
Kay Earnshaw, Peterborough

7 weeks ago my mother died, just 7 weeks after diagnosis of terminal cancer. Her death came a lot sooner than anyone thought, after being admitted to hospital because of a medical emergency. Once it was clear she was dying, she was asked how she felt and she said she wanted to be at home. However, we were told by the Macmillan nurse that this would require a 'homecare plan' which would take too long to arrange (unbelievably, including assessment to see if the NHS would pay) and she also said that nursing care, especially at night, was hit and miss and could not be guaranteed. Mum was put on a waiting list for our local hospice which she wasn't happy with but accepted. In the meantime, the hospital staff did the best they could in difficult circumstances, but there were no side-rooms available and we were facing the prospect of Mum going through her final hours in a busy, noisy surgical ward - rather like dying in a shopping-centre surrounded by your distressed relatives. Thankfully, she was tranferred to the hospice for her last 30 hours. By contrast, the hospice was calm and peaceful, accommodating, sensitive and supportive of both patient and family and, as harrowing as the time was, I treasure those final hours. Not everyone wants to, or can, die at home and hospice beds are few and far between. We urgently need more hospices or at the very least hospital facilities that can provide the necessary peace, privacy and sensitivity at such an important time.
Frankie, Northampton, England

My husband Bill died in St Annes hospice on march 17th 2008. He had ben diagnosed in July 2007 with rectal cancer stage 4 with only palliative care as a treatment option. We had offers of support but managed very well alone until Febuary when Bill was being sick all the time and had a lot of pain. He had developed boney metastases which affected his calcium levels. It was our only hospital admission. When he started being sick again we were told that it was manageable but need treatment. We refused hospital but were given a bed for treatment in the hospice. It was lovely and a kind caring place where we were able to function as if we were at home but knew that we only had to ask for help. Bill always wanted to die at home but by the Sunday we knew that it was only a matter of time so we stayed. OUr childrn stayed with us, our friends all came to say goodbye and our dog came as well. I spent every last moment with Bill and only had to think about being with him. I was able to keep my promise that I would ensure that he had all the painkillers he needed. I laid on bed with him and was able to hold him until he left me. I will be forever grateful to the people at St Annes for their kindness to Bill, myself and our children. Bill was only 48 when he died and he had the rare talent of making everyone love him.
Liz Bruen, Newport, Wales

Earlier this month, my elderly mother, who was suffering from heart failure, was able to die at home. Her Primary Care Trust, in Hillingdon, put everything in place for this to happen. There seemed to be very good communication between the PCT, the local hospice and charities such as Macmillan and Marie Curie. Care included visiting nurses and carers, night sitters, equipment as well as support for myself. Going into hospital was my mother's greatest fear and her GP and her excellent district nurse made sure that was never a possibility. I was able to stay with her during the final days of her life and she was where she wanted to be, at home. Prior to this experience, I had no idea that care at home was an option, having always assumed that she would eventually have to go into hospital. I will always be grateful that her wishes were respected.
Julie Hardy, Woking UK

My mother died three weeks ago from an aggressive form of cancer. She and we made it clear about a month before her death that we wanted her to come home. The NHS District Nursing team were absolutely fantastic and, with a Macmillan nurse liaising with them daily, provided amazing care for my mother. All symptoms and equipment were managed, and they gave my mother the dignity she deserved. All the while, the team were sensitive, caring and professional, not only to my mother, but to the rest of the family. I was saddened to find that we are the exception rather than the rule in receiving such an exemplary service from the NHS and am completely in favour of the new plans. End of life care should be available for all of those who want it at home; not just the lucky few, as it appears we were.
Ian, Cardiff

My Mum died of cancer last year - her deepest wish was to spend her last few days in her own home, and die in her own bed, with the people she cared about around her. She spent a week in the local hospice, who reviewed her pain management strategy and then let her go where she wanted to be. She was asked regularly if she was happy, and if she wanted to be where there were nurses on hand all the time - she constantly reiterated that home was where she wanted to be. She died as she wished, in her own bed, with her loved one's around her, in the arms of her beloved partner. This was made possible by an understanding GP, a supportive hospice service and but the constant, unwavering support of nurses from MacMillan Cancer Care. We were offered full time nursing support from Marie Curie Care, as the end approached, but we did not have the opportunity to accept this as she passed away the day before this ws going to start. It breaks my heart to think that people are forced to move to a hospice or hospital if that's not what they want, because there aren't enough Macmillan or Marie Curie nurses available. It's a crime that this level of support is funded by charities, not by the public purse - it should be a right not a privilege. Death is as much a part of life as birth - people who know that they are facing this should - no MUST - be supported to make their end as dignified and comfortable as possible.
Jane, Littlehampton, UK

My mother died at home last week, only due to my sister being persistent and fighting for the support she needed. My sister was in a position whereby my mother could not be left,when mum was not well enough to go to the Hospice day centre, my sister had 6 hrs off a week courtesy of a sitter, and the team supposedly responsible for care thought that was enough. As we started to reach the end, Mum had to have someone awake with her at night, it was only in the last few days that that help was given. Not everyone has a team of family to support, and indeed everyday life has to go on, children have to go to school, work has to be done. A lot more needs to be done. During a crisis over a weekend my sister was told due to weekend schedules no-one was on duty for another hour or so... and that was on a Saturday afternoon. I could say much more, but it would take a book.
Amanda, Spain

I am 43 with terminal cancer and the last place I want to die is at home. I don't want my husband and young daughters to feel that their one place of refuge has been violated by the sort of death I am likely to die. Sure, 2/3 of people may like to die at home if they think they'll be 95 and dying peacefully in their sleep, but for the family home to be invaded at such a time by illness, smells, unknown carers etc would be hideous. What we want is more hospice beds where all that can be dealt with, where appropriate advice and support can be forthcoming and from where a family (particularly children) can return to their own beds without the spectre of death hanging over the home.
Barbara, Stroud

My father died at home 6 years ago and I have to say it was the most dignified and wonderful death. We were lucky in that he was a GP, my mother is a nurse, and due to redundancy I was able to go and live with them at home for the last 4 months of his life to help mum out. He never went into a hospice, and my mother, the local Devon GP and his team of nurses, as well as a complete angel of a Macmillan Nurse took complete care of him from start to finish. We were clearly extremely lucky.

It was obvious to both my mother and father when the end was coming, and my mother was completely honest with me and my brother about what was going on. Living at home with them during those last few months gave us all time to say everything we wanted to my father, and gave him the chance to say goodbye. About an hour after he died, my mother and I were able to wash him, and "lay him to rest" in the old-fashioned traditional sense before the undertakers came to collect him the next morning. Something that I know my mother and I considered such a priviledge. And my father would have been so happy to know that we did this for him. The whole experience has also made home an even more comforting place to go to now.
Liz Gray, Bath




SEE ALSO
'I'm so glad he died at home'
16 Jul 08 |  Health
Calls for better care for dying
10 Jan 06 |  UK Politics

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