Dying for Change
by Sophie McKay
Half a million people die in the UK every year. But there is a troubling discrepancy between how people die and how they wish to die. For an event so significant it lacks (for most people) choice.
The new Demos pamphlet, Dying for Change, looks at how people die in modern Britain. The vast majority (60 per cent) die in hospital. Our research shows this is not what most people want. Most people would prefer to die at home, surrounded by their families and familiar possessions. By 2030 only 1 in 10 people will die at home.
The research also estimates that £500m (equating to a total of 2.5 per cent) of the NHS budget for end of life care could be channelled into providing care that allows individuals to die at home or within the community,with the support they need, instead of hospital. Not only does this provide people with an option they prefer and a more dignified death, it also more than finances itself over the course of a decade.
The research suggests that this money could be spent on a variety of measures to improve the quality of end of life care that uses Big Society to its full potential. These include creation of new places to die; strengthening family support care networks; creation of community nursing and telephone medical help-lines; spreading the use of personal budgets to palliative care and encouraging people to talk more openly about death.
Dying for Change shows that difficult as death may be, there are still choices that should and can be made available to those nearing the end of their lives.
Mandy Thomlinson
The preface to this report is powerful and we hope it is shared widely. It could be used in secondary schools for example.
The report contains many constructive suggestions to improve care of the dying. At www.RespectOurWishes.com we try to help by making advance care plans available free to all online. The statement of last wishes covers preferred place of dying, spiritual support, music preference etc.
We have no agenda over what the choices should be. We just advocate talking about dying before a crisis occurs.
Carolyn dutton
My father(89) died 2 years ago from lung cancer.
At the same my mother was continually in &out of hospital.He wanted to die at home,my mother couldn't look after him.we tried to support them during the day and night but it was beyond us.
He was offered a hospice place but that meant leaving home and his wife. Two days later he was so poorly that he needed hospital care,however there was no vacant bed in a hospital or hospice.They ended up in a nursing home which we had to PAY FOR. Macmillan nurse was slightly helpful but our problem was night care and day nursing care We got 1 night sit but the amount of input from district nurse was limited by their own work.The care of the dying must be more joined up and when someone is at the late stages nursing care needs to be there 24hours not as and when and if you're lucky.
Carolyn
Susan Noble
An excellent and welcome report.
£500m seems modest in terms of what it could achieve but the question still remains of how this could be funded.
Earlier this year an innovative funding iniative , The Social Impact Bond, was launched which aligns the interests of philanthropy minded investors, the public sector and the provider of social services. Success is determined by improved social outcomes (The test case involves the Ministry of Justice and the required outcome being reduced re-offending rates)
Have the authors considered such an approach to funding and could this model be part of the debate 'Dying for Change'?
Nicholas Mellor
Very glad that you scanned the world looking for models that we might learn from.
As Dr. Jan Stjernsward, Chief Cancer, WHO, Emeritus, noted:
‘The hospice approach or the institutionalised medical approach has failed to reach the majority of those in need of palliative care, covering only a lucky few. The West is not always best. There, birth and death have been institutionalised and traditional cultural support systems have been lost to a purely medical approach that, in the very near future, will not be sustainable, much less reproducible in the rest of the world considering the rapid aging of the populations. The ratio of caregiver to caretakers has already reached a ratio of 2:1 and may soon be 1:1, and today's brilliant hospital/hospice care for the select few will not be possible for the majority of the world's terminally ill.’
I may have misread the report, but the financial costs focussed very much on direct hospital costs whereas there are very significant long term costs due to a 'bad death' when the family may become permanently fragmented by the tensions this may cause.
Secondly often the medical system is late in introducing the concept of palliative care to the patient given the overriding scientific optimism that permeates a 'medically drive' approach to healthcare.
In my international work, I have seen families use of their reserves seeking a cure, however late in the day, and leaving the survivors and children exposed to extreme poverty (fortunately this must be very rare in the UK).
Dr David Latimer
yes most people want to die peaceable at home or a familiar place, but they don't they die in hospital, why is that?
May I suggest that this is or has a lot to do with the relatives, loved ones etc,
ok example. your sitting by the side of your Dad's bed. who has been dying from say pancreatic cancer for 18 months. suddenly his breathing becomes short , he starts retching, then he calms down a bit but his breathing is still funny, you feel sure hes going to die?
what do you do? Dial 999 of course ,
but hang on a mo. why?
he is dying so you have 2 choices
1 call the family and have them sit round while he dies (he'll be gone in 29 minutes max)
2 dial 999 - the Paramedics arrive.Your Dad ends up in the ICU (Intensive Care Unit) with a tracheotomy ( hole in your throat so a machine can make you breathe) and then he dies 10 days later having never regained consciousness and you have to sit there for 10 days waiting for him to die
Why does this happen? Because everyone has been brainwashed into thinking that medicine/science can fix everything
well it can't
when the Grim Reaper comes for you then you have to go with him / or her
jane bates
as a British doctor working as a palliative care physician working in Malawi this is a welcome report to reflect on. I will enjoy using the opening material in discussions with medical students. Many patients here are brought by their families to die in hospital so that they can be seen to be doing the right thing. Transport of bodies to distant home locations is then expensive and adds to the costs of already crippling funeral budgets. in the midst of the HIV epidemic the average age of our palliative care patients is 43, so a different environment but many of the same issues compounded by a severe lack of material resource but enriched by many psychsocial and spiritual resources provided at family and community level.
Ben Jameson
This is a very welcome report.
I work in the Acute GP Service at Derriford Hospital in Plymouth. We take all requests for acute hospital care from community GPs. We freqently recieve requests for acute care in the last few days of life.
When general practice works well, these crises can be avoided. If the proposals outlined were universally applied patients could have their choices respected at the end of life. Until this time, we will comntinue to have patients present in crisis.
We propose to develop a GP based team to respond to acute deterioration at the end of life and to look at symptom control, diagnosis and to support patient choice when dying.
The report does not consider an acute repsonse, but we will probably always need to have this service as a support when long term plans have not worked out or the opportunity to plan has been missed.
Ben.