The Rt Hon Jeremy Hunt
House of Commons
07th October 2014
Dear Mr Hunt,
I was interested to hear that the government has set up an independent review into choices in end-of-life care. I have attached results from a survey that we recently conducted regarding Living Wills (also known as Advance Decisions) and end-of-life care, which you may find interesting, and instructive for your review.
We sit at an unparalleled juncture in history, in which most of us can expect to live to old age. Compare this to medieval Britain, where life expectancy was just 30 years. It is not uncommon now, however, to survive to middle age before personally experiencing the death of a loved one. Advances in modern medicine allow us to live well with chronic illness, but we also run the risk that the lives of frail older people are prolonged to the point where life becomes a burden. As medicine develops, so too does the ability to prolong life by artificial means. Machines to enable a person to breathe and feed them intravenously and resuscitating a person or administering drugs can all prolong life, even if these actions themselves can no longer aid recovery. Dying people often fear ‘lingering on’ unnecessarily, and have priorities such as retaining a sense of control and not being a burden on their loved ones. Yet in the medical setting, we can often overlook the wishes of a patient to have a peaceful death.
Added to this, it is very rare to find realistic public depictions of the most common death in our society today – that of the frail, older patient with slowly deteriorating health, in a hospital bed. Death in the media is dramatised death, designed to entertain or provoke. These distorted death-representations only lead us to trivialise the subject, warping our perceptions of death, and at the same time leaving us just as unprepared for the real thing.
In more recent years, much has been written about the Living Will and the need to have one in place, should we lose capacity during our lifetime and be unable to communicate our specific wishes concerning certain medical treatment. Sadly it took the tragedy of Hillsborough and the case of Tony Bland before the courts began to focus on such issues.
Mr Bland was diagnosed as being in a persistent vegetative state, having suffered head injuries at the Hillsborough Stadium. It was widely acknowledged that there was no chance of recovery. His family and doctors wished to remove his feeding tube to allow him to die but at that time it was illegal to do so without the consent of the courts. The courts eventually ruled that it could be done and, at the same time, expressed views that seemed supportive of Living Wills.
In reaction to this the Medical Treatment Bill was introduced to parliament in 1992. Then in 1993, the Law Commission in England declared that the refusal of an Advance Decision should carry the same weight as refusing a request of a patient who had full capacity.
Further court decisions in England and Wales seemed to uphold the validity of Living Wills until finally in April 2007, the Mental Capacity Act 2005 came into force and put Living Wills in England and Wales on a statutory footing and confirmed their legality, provided that the terms of any deed drawn up in this connection complied with the provisions laid down in the act.
Yet, almost a decade after the Act was drafted, statistics reveal that the overwhelming majority of people have not planned for serious illness or end-of-life care. Ask people if they want a say in their medical care, and most would say “yes”. But according to the ONS’s recent National Survey of Bereaved People, almost two-thirds of respondents (63%) reported that no decisions had been made about care which the patient would not have wanted; and that is despite 94% of people expressing their conviction in the right to determine how they are treated medically in the future.
Moreover, a quality marker for end-of-life care is that the individual should be able to die in their place of choice but the statistics below demonstrate that this often does not happen. Only 32% of family members reported that their relative had expressed a preference of where they would like to die. For those who expressed a preference, the majority preferred to die at home (79%) while a minority expressed a preference to die in hospital (3%), but only 35% of people who want to die at home actually die there. Half of people (50%) who want to die at home, die in hospital.
Statement 3 of the NICE Quality standards for End of Life Care for Adults emphasises the importance of people approaching the end of life feeling satisfied that they have been able to discuss, record and review their needs and preferences and take a role in planning and decision-making, if they would like to do so. It is clearly a concern that so many individuals have not been afforded these standards of care, despite the fact that Living Wills should have been made freely available years ago.
Therefore, it is in response to these rather depressing thoughts that I would like to provide you with details of the new UK Living Will Registry which has recently launched, and is already working to help increase the choice that people have about how, when and where they receive end of life care. I hope you will agree that the service we provide will become an important link in the overall system that will be needed to enable end-of-life choices to be acted upon.
At the UK Living Will Registry, we believe that everybody has the right to be able to decide how they wish to be cared for, where they want to die, and to make decisions in advance as to how they are to be treated at the end of their lives in case they are ever unable to decide for themselves.
Let me briefly remind you of the main benefits of Living Wills. Living Wills ensure that patients who have mental capacity (that is, who can understand, believe, retain and weigh the necessary information) can make their own decisions to refuse treatment, even if those decisions appear irrational to the doctor or may place the patient’s health or life at risk. In other words they respect the rights of competent adults. Living Wills also release huge levels of responsibility from medical professionals, who no longer have to “guess” patients’ medical care wishes when incapacitated. It also removes uncertainty and discourse from patients’ families, lifting what can often be a huge, emotional burden.
Every adult in the UK should have a Living Will. Much like taking out an insurance policy, it is something you hope you will never need, but because we cannot accurately predict the future it is sensible to have one in the unfortunate case you ever do. To illustrate the insurance aspect of Living Wills, just consider this frightening statistic: 10 to 15 people per 100,000 of the population will suffer a severe head injury each year and currently 120,000 people suffer from the long-term effects of severe brain injury. All would have potentially benefited from taking out a Living Will and registering it; certainly all those who suffer unforeseen accidents in the future would be better protected if they had their own Living Will.
However, creating a Living Will is only the first step – it will only be fully effective if one’s family and the medical profession are both aware of it and can easily access it.
This is why we have taken the time to create the UK’s first national registry for Living Wills. Our aim is to massively increase the availability of Living Wills and provide people with the opportunity to express their wishes, and crucially to make them easily available to medical professionals, After all, what’s the point in expressing your care and medical wishes if no one knows about them!
However, the usefulness of our service goes significantly beyond just ensuring that people’s wishes are adhered to, as important as that is. I write to you at a time of looming demographic crisis. As the baby boomer generation is set to retire, a huge age disparity in the UK means that the labour participation rate is likely to plummet. Fewer workers will mean less economic growth, and a greater dependency ratio will translate to fewer working-age people to support the economy. The retirement of the baby boomers generation is imminent. Retirees are no longer part of the workforce, do not spend as much as other age groups, and are much more likely to be dependent on the support of others. This state of affairs is inevitable, and nothing is likely to stop it.
Against this backdrop of rising demand and flat-lining budgets lurks an NHS funding black hole that must be filled (an NHS deficit of £30bn is predicted by 2020). In such an environment anything that promises even marginal cost-savings should not only be welcomed but actively encouraged and supported. Therefore I also wish to provide you with information about how the service that the UK Living Will Registry provides might help to optimize workflow in the NHS and lead to quite considerable cost savings.
You are probably aware that in the US, states have begun paying for people to create their own Living Will (or Advance Directives, as they’re known over there). Presumably this is influenced by the savings accrued and the consequent decrease in medical costs to both the state and individuals.
Of U.S. deaths, 25%-55% occur in health care facilities. Numerous studies have documented critical deficits in the medical care of the dying; it has been found to be unnecessarily prolonged, painful,expensive, and emotionally burdensome to both patients and their families.
Aggressive medical intervention leaves nearly two million Americans confined to nursing homes,and over 1.4 million Americans remain so medically frail as to survive only through the use of feeding tubes. As many as 30,000 persons are kept alive in comatose and permanently vegetative states. Cost burdens to the state, individuals and families are considerable.
Yet, studies indicate that up 90-95% of people would rather refuse aggressive medical treatment than have their lives medically prolonged in incompetent or other poor prognosis states.
As more and more Americans experienced the burdens and diminishing benefits of invasive and aggressive medical treatment in poor prognosis states – either directly (themselves) or through a loved one – pressure began to mount to devise ways to avoid the suffering and costs associated with treatments one did not want in personally untenable situations.
Cue the Medicare Choices Empowerment Act, which is due to be introduced to the Senate later this year. It is designed to establish an Advance Directive Certification Programme to encourage those on Medicare to adopt and maintain certified advance directives. To incentivise the process, they propose a one-off payment of $75 to each eligible beneficiary that adopts an advance directive and registers it with their state registry. Whilst I do not possess any figures, this Act has clearly been motivated by the perceived cost savings that are likely to accrue with the reduction in intensive end-of life care.
Whilst medical care in the US is evidently funded differently to that in the UK, the situation in Britain regarding invasive, unnecessarily prolonged and expensive end-of-life treatment and care is remarkably similar to that across the pond.
It’s getting to the stage that our government is going to have to face the facts: NHS spending is forecast to increase at a, quite frankly, unsustainable rate, and will eventually reach a breaking point – you only have to look at the myriad hospitals and surgeries buckling under the twin crises of rising demand and static budgets to wonder whether we haven’t reached this point already. Political promises of extra cash – presumably at the expense of the young, who haven’t brought such a crisis on themselves, provided for the benefit of the politically powerful baby-boomer generation, who have already made themselves asset-rich at the expense of future generations and who are quite clearly also willing to force the bill for their retirements down their throats as well – are clearly going to be insufficient to address a funding crisis that is putting at risk the founding principles of the health service. In such an environment anything that promises even marginal cost-savings should not only be welcomed but actively encouraged and supported.
We would welcome an independent review into the potential savings to the NHS that would accrue were the majority of the population to create their own Living Will. We postulate, on the back of quite convincing evidence, that about 90% of people would refuse intensive treatment at the end of their lives, but of course a more conservative estimate would need to be used. Currently, about a third of the health budget is spent on those above 85 years of age, and about two-thirds is spent on those above 65. Of this a large proportion is spent in the last 6 months of a person’s life. Strikingly, a recent Nuffield report, called Understanding Patterns of Health and Social Care at the End of Life, suggested that over half of all hospital costs were due to activity in the last three months of life.
But much of this funding is being wasted on those who have no chance of a meaningful recovery, and many of whom would rather have been given the choice of a more comfortable, shorter dying process at home surrounded by their loved ones. The likely savings to the NHS – if peoples’ actual wishes were adhered to rather than doctors reverting to the default position of treating people no matter what – would be substantial.
If the results of this proposed inquiry were to suggest large cost-savings, it would be sensible to proceed as the USA have done before us, viz. that the state should provide payments to people who both create a Living Will and then register it with the national registry to make it readily available to relevant health professionals.
Currently, the NHS’s integrated Digital Care Record is not fit for purpose. Specific to our concerns, there is currently no universal capability for providing all relevant medical professionals with information regarding people’s end-of-life wishes, in the event that they lose capacity. The paperless medical records of every patient in the country are not anywhere near as comprehensive or joined-up as they could be. What is needed is the input of an external, independent organisation to help establish and manage best practices for the current storage and completion of Living Wills. This would result in an optimised workflow in end-of-life care, aid increased innovation in how care is organised and delivered, and deliver better value (in accordance with peoples wishes) at a vastly lower cost than what is currently provided by the NHS.
This is where we believe we can help. The UK Living Will Registry is the only national registry dedicated to effectively communicating medical care wishes to all relevant parties such as Doctors and Family, in the event of mental or physical incapacity.
Our Free Living Will, created by a leading QC in the field, allows people to make it crystal clear how they would like to be treated across the spectrum of medical care scenarios.
Once the simple, step-by-step, online form (with adjoining comprehensive guidance notes) has been filled-out, we email a copy of the personalised Living Will to be printed and signed.
People are at total liberty to limit their actions to this free service but we would hope that some will value and join our Registration Service.
- Living Will Registration Card
- Stickers for placing on Driver’s License, ID and other highly visible locations
- Secure registration ID for doctors to add to their digital patient record
all display a unique access code that gives access to their own, password protected and encrypted webpage which displays their wishes.
This is the only way that they can ensure that all relevant parties are aware of their wishes should they become mentally or physically incapacitated, 24 hours a day, 7 days a week, day or night.
Clearly, advance decisions, in which people specify what medical treatment they want close to death if they ever become unable to make such decisions for themselves, will become more common in the UK. A large majority have already expressed their conviction in the right to make decisions regarding their medical care in advance, by creating a Living Will, even though only 3% have actually created one.
Already in the United States, a record number of people are completing such documents. Between 2000 and 2010, the proportion of people with advance directives rose from 47 to 72 per cent.
As I have argued, as the world’s population ages and end-of-life health care costs spiral with more advanced methods of keeping patients alive – but not necessarily improving their quality of life – their use is highly likely to grow. Not only are Living Wills good for individuals because they help them to make health care decisions for themselves and remove stress from their families; but they are also good for the health care industry because they have the potential to cut costs significantly.
Currently, lack of familiarity with Living Wills, coupled with many complicated, unresolved issues surrounding them, mostly due to ignorance or misunderstanding, make Living Wills a thorny area. That terminally ill people’s wishes should be respected, and those who choose to opt out of treatment if the prognosis is particularly bad ought to be allowed to do so, is no longer a debate. The state’s role in collecting, managing and storing peoples’ wishes is.
I sincerely hope you feel that our service might be of interest and that you will consider us when you come to outline the systems and processes that will be needed to enable the kind of choices people would like to be able to make at the end-of-life. By doing so, you will be able to ensure that people’s wishes, with regards to their end-of-life medical care, are carried out in the event that they ever lose their mental or physical capacity.
Moreover, many would undoubtedly welcome our proposal that you commission an independent review into the likely cost savings were the majority of adults in England and Wales to create a Living Will. It would definitely be highly informative.
While we welcome the fact that the NHS has risen to the top of the political agenda, and some new spending commitments have been made, we need a comprehensive, long-term spending plan if an NHS true to its founding principles of universal healthcare, provided according to need not ability to pay, is secured for future generations. The NHS, social services, health and care professionals and above all, the British people, deserve no less.
We certainly believe that the UK Living Will Registry will become an important element of the future of end-of-life care decisions in the UK, and that the government would do well to encourage the use of our services.
Please feel free to contact myself or any of my colleagues with any questions you may have.
I hope to hear from you in due course.
UK Living Will Registry
The Rt Hon Gregory Barker MP
The Rt Hon Greg Clark MP
The Rt Hon. the Lord Ashdown of Norton-sub-Hamdon
Mr Sam Lister, Dept. of Health Director of Comms.