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Reshuffling health and social care – finding models that work

Fri, 2018-01-12 12:48

Monday’s cabinet reshuffle has opened up some interesting possibilities. With Jeremy Hunt not only staying on as Secretary of State for Health, he has now widened his official remit / title to Secretary of State for Health and Social Care, with the current Department of Health being accordingly renamed the Department of Health and Social Care (DHSC).

Leaving aside that Hunt is not popular with health professionals (although I challenge anyone to name me any Secretary of State for Health who HAS been popular with health professionals!) and that in reality, social care has been a part of his remit for some time, this is, we hope more than just a change of title. We hope that it shows a recognition within the government that to reform healthcare in the UK, we must also reform social care.

It is a bit of a no brainer really – the two are so interlinked. Indeed, the Head of NHS England announced several local pilots integrating health and social care last summer. It is not a new idea!

At the same time as the NHS seems to be facing its worst winter crisis in a long time, if not its worst ever, many are calling for a cross party rethink on how we fund and deliver care in the country, and many are now calling for a cross-party Royal Commission to do this. Certainly, Hunt will be taking the lead on a new green paper to address health and social care reform in the coming months. So, reform of one kind or another would seem to be afoot.

Many fear that the ongoing reforms of the last two administrations are an attempt to ‘privatise’ the National Health Service (NHS) by stealth. These anxieties, from left wing media and health professional bodies, stem from an anxiety that subcontracting out services to ‘for profit’ companies risks diluting or even destroying the NHS ethos of care free at the point of delivery to all according to need rather than ability to pay. These voices argue that the profit motive leads to cut corners and compromises that do not benefit patients. More funding and more state sector intervention is the only hope of saving the NHS and its core ethos, they argue.

On the right, the concern is that a growing bill for providing services cannot be met, and a new, more cost-efficient health service is needed, with less bureaucracy. Market competition is far more efficient than state control, they argue, and so will lead to a more efficient service without compromising care.

Both are right and wrong, I would suggest. Right in much of their diagnoses, wrong in most their prescriptions.

Markets are great for products we buy and sell – they ensure that there is a price that reflect the need for the product and the cost of its production. Health, however, is not a product or a commodity – it is a fundamental of human existence. Healthcare is therefore not a product, it is an essential service that all of us will need to access to maintain our health at some point or other in our lives. More than that, the provision of health and social care is an act of social solidarity that says all human lives matter and that the quality of those lives matter. Ensuring people are cared for and treated well and with dignity is a core act of social solidarity.

The state has an important role in coordinating and distributing essential services and resources, responding to and identifying needs at a macro level through policy and infrastructure in a way that the private sector cannot. But central planning is a blunt instrument and does not easily allow for innovation and creativity. It can be inflexible, and can fail to respond to the difference in needs and circumstances as a very local level.

The German sociologist Tönnies pointed out that in pre-Enlightenment Europe mutual social solidarity was provided by the church, as a local, national and a supra national network and institution. Societies looked after those in need in their community through a variety of institutions and networks, many founded in the church. In many parts of this country, the church still fulfils that role.

Post Enlightenment, there was a move towards more secular networks and institutions to continue this, but also a shift from what Tönnies termed Gemeinschaft (community, mutuality, social responsibility, loyalty, friendship and love) towards Gesellschaft (a group of individuals bound together by utilitarian interests and necessity). The profit motive that is one of the big ties in Gesellschaft removed the sense of mutual care, responsibility and social solidarity. It puts career at the centre, and denies or minimises a sense of vocation, or calling to health or social care.

Socialist and free market systems are both guilty of promoting Gesellschaft at the expense of Gemeinschaft. The barren nature of Soviet era healthcare in Eastern Europe shows this at its most stark – universal, technically competent (for the most part) but reducing people to machines to be fixed and put back to work. It ignored the fact that people have complex hinterlands and responsibilities as well as needs. The free market approach to healthcare in some Western nations displays a similar, bleak utilitarianism that ignores the social and spiritual nature of human beings.

The NHS, amazingly, seems to hold these two ideas in tension – maintaining an ethos of service and social solidarity while operating a modern, professional pay and career structure. How else can we explain the number of staff working well over and above the hours for which they are paid just to keep services running, especially in the current crisis? The staff believe in the NHS, value it and through their time and effort, invest in it as a social institution.

This marrying of the vocational and the professional can probably be laid at the feet of such luminaries as Florence Nightingale who saw no contradiction between the two. And probably to many other social reformers of the 19th and 20th century as well, including the father of the NHS, Aneurin Bevan. While Bevan was an atheist, many of the other reformers of the 18th, 19th and early 20th centuries (such as Wilberforce, Fry, Barnardo, Shaftesbury, etc) were Christians – mostly evangelicals or non-conformists. However, even Bevan had his values shaped in a Welsh upbringing influenced by chapel and the Welsh revivals.

If we are going to see reform in the NHS, it must keep these two elements together – social solidarity and professionalism. While a pure profit motive will never do this, many are setting up Community Interest Companies (CICs) that hold the values of service and social solidarity alongside professionalism and a social entrepreneurship that is creating innovative responses to real needs.

In Manchester, where health and social care budgets are combined and are being commissioned jointly in a trial known as DevoManc, I have seen some real examples of this. One such CIC was started off by a medical student on an Oldham council estate who saw the lack of local GP services in her community. She challenged the local commissioning group about this, and they instead got her to set up a practice to address the needs she saw. The model of whole person care that the practice developed (drawn from a Christian world view) involved working with local community groups, churches and others to address the social as well as health needs of the people on the estate. It was so effective that the CIC she founded to run the practice is now managing nine practices across Greater Manchester, specialising in providing health in areas of social deprivation.

They have gone on to developed specialised community services such as Focused Care to help patients who have difficulty accessing services and complying with treatment. This service marries health and social services in an innovative, family focused approach to supporting patients with complex health and social needs.

This example shows how a private company can be moved, not by a profit motive, but by the ethos of care and compassion at the heart of the NHS’s founding principles. It also shows how small bodies can innovate in a way that larger organisations can sometimes struggle to emulate.

There are many other such innovations that should be part of the fresh thinking needed for health service reform. That many (though not all) of these are faith based should come as no surprise. The church has owned the ethos of social solidarity since it began two thousand years ago. Simply because it is the natural outworking of the gospel of Jesus Christ.

So, Mr Hunt, if you are listening as you survey your expanded DHSC kingdom, you would do well to come and talk to those out in the community who are already re-imagining health and social care, many of whom do so in service of another, much greater Kingdom.

Categories: Discussion

Some Big Public Policy Challenges in Bioethics we can expect in 2018

Thu, 2018-01-11 15:38

As we look forward to the challenges that 2018 will bring I am struggling to think of a time when we have faced more major public policy challenges in bioethics in so many areas all at once.

This is perhaps inevitable given the march of secular humanism through parliament, the courts and institutions.

Here is some background on the five major threats currently looming.

  1. Assisted Suicide 

Given that 11 attempts in British Parliaments to change the law to allow assisted suicide or euthanasia have failed since 2003 our opponents, not surprisingly, have shifted their attention to the courts in an attempt to change the law through the back door.

Conway, who has motor neurone disease and is seeking assisted suicide, lost his case in which CNK Alliance intervened in the Divisional Court in October, and his appeal to the High Court was denied. He now plans to appeal directly to the Court of Appeal. See my previous comments on the case here.

Omid, who has multiple system atrophy and is also seeking assisted suicide, had a preliminary hearing on 21 November and has appealed to the judges to allow a full enquiry in which all witnesses can be cross-examined along the lines of the Carter case in Canada. We await their decision.

There have been three worrying judgements by the Court of Protection in the last few months (see here and here). Formerly all patients with Permanent Vegetative State (PVS) and Minimally Conscious State (MCS) had to go to court for appeals about the removal of artificial nutrition and hydration (ANH), but now there are moves to withdraw ANH from these and less severely brain-damaged patients who are not imminently dying without going to court provided that both doctors and relatives agree that it is in the patient’s ‘best interests’. The Official Solicitor will appeal these judgements in the Supreme Court on 29 January. My fuller review is here.

A recent case involving a pharmacist (Desai) who helped his father end his life with a morphine and insulin overdose resulted only in a nine-month suspended sentence. The general trend is toward fewer prosecutions and convictions for assisted suicide and the DPP’s prosecution criteria on assisted suicide are being interpreted very liberally.

  1. Abortion

The ‘We Trust Women’ campaign (masterminded by Ann Furedi of BPAS) is gaining momentum and now has the support of the RCOG, BMA and RCM. Whilst there is no bill currently before Parliament (and none likely to appear before 2019) proabortion activists may seek to amend a government health bill to achieve their aim of completely decriminalising abortion (see my previous posts here, here, here and here).

This will most likely involve repealing Sections 58 and 59 of the Offences Against the Person Act 1861 (OAPA) which make procuring an abortion for oneself or others a crime punishable by life imprisonment. The effect would be to make abortion legal for any reason up to 28 weeks and, if the Infant Life (Preservation Act) 1929 is repealed too, up to birth.

Were this to succeed the Abortion Act 1967 with all its provisions (two doctors, licensed premises, reporting, conscience clause etc) would fall as it is contingent upon the OAPA.

There are also calls to relax the abortion laws in Northern Ireland, Ireland and the Isle of Man.

  1. Organ transplantation

Geoffrey Robinson MP wants to bring in an opt-out system for organ donation in England. His Organ Donation (Deemed Consent) Bill is due its second reading (debate stage) on 23 February 2018.

In ‘deemed’ (presumed) consent, a person, unless he or she specifically ‘opts out’, is assumed to have given consent to the harvest of their organs after death, even if their wishes are not known. Although relatives may be consulted (a so called ‘soft’ opt out), to ascertain any wishes of the deceased expressed before death, their views can still be overruled by the state should they decide against transplantation. Wales already operates an opt-out system for organ donation and it is likely that Scotland will follow.

Robinson’s private member’s bill may be overtaken by a new government bill seeking to achieve the same thing. The government has just launched a consultation, closing on 6 March 2018, which proposes ‘changing the current law on organ donation consent whilst also allowing people to opt out if they want to’. Both Theresa May, the prime minister and Jeremy Corbyn, the leader of the opposition have signalled support and a Daily Mirror Campaign has built support.

However, evidence for the claim that an opt-out system will increase transplants is still lacking. In Wales, where an opt-out system was introduced in December 2015, there has been a small dip in the number of deceased donors. The Nuffield Council advised in October that robust evidence is needed before any change to the law is considered. But it is also unethical.

Donation must be without coercion and the final decision must lie with the family based on what the person would have wanted, if this is known. Organs are not the property of the state and must not be ‘taken’ without permission, however needy any prospective recipient may be (see previous CMF articles and blog posts here, here and here)

  1. Transgender

Under the Gender Recognition Act 2014, to change gender legally, one must have lived in one’s chosen gender for two years, be 18 or over, have a medical diagnosis of gender dysphoria and appear before a gender recognition panel.

Justine Greening, the Secretary of State for Education, Women and Equalities, wants to allow people to change their gender purely based on self-declaration without having to see a doctor nor appear before a gender recognition panel.

A consultation toward this end has been announced and is to be launched shortly. A Scottish consultation is already underway and closes on 1 March.

She has the support of both Theresa May and Jeremy Corbyn although there is now some resistance growing and recent reports suggest that Greening may be having second thoughts (see further comment here and here).

  1. Freedom of Conscience in healthcare

Currently there is statutory conscience protection for health professionals only for involvement in abortion and activities authorised under the Human fertilisation and Embryology Act. The scope of the former is restricted because of a Supreme Court judgement on the case of two Glasgow midwives.

Freedom of conscience for other activities (eg. Hormones for transgender, abortifacient contraceptives, PrEP, withdrawal of ANH etc) is covered only partially by equality legislation.

There were two significant victories on freedom of conscience last year. The General Pharmaceutical Council, which regulates Pharmacists and Pharmacies, modified new guidance which would have replaced a ‘right to refer’ with a ‘duty to dispense’, in response to protests from interest groups (see my previous comment here).

The Faculty of Sexual and Reproductive Health (FSRH), part of the RCOG, reversed regulations which denied those with conscience objections to some contraceptives, from obtaining its diplomas. This appeared to be in response to criticism by CMF.

These two wins underline the fact that conscience freedom depends on constant vigilance.

Baroness O’Loan’s Conscientious Objection (Medical Activities) Bill is to have its second reading in the House of Lords on 26 January 2018. Although this bill is much narrower in scope than we would have preferred (covering only abortion, IVF and related technologies and withdrawal of treatment) it has our support.

So, a busy year awaits. Watch this space for further developments.

Categories: Discussion

Supreme Court to rule on whether doctors can remove food and fluids from brain-damaged patients without going to court

Tue, 2018-01-09 16:57

Should doctors be able to withdraw food and fluids from severely brain-damaged patients who are not imminently dying? And if so, in what circumstances?

The answer to these questions has changed dramatically as a result of recent decisions by the Court of Protection which are due to be appealed in the Supreme Court on 29 January 2018.

The case of Tony Bland in 1993 (who was in a permanent vegetative state (PVS) after being injured at the Hillsborough Stadium Disaster) established that clinically assisted nutrition and hydration (CANH) is a form of medical treatment that can be withdrawn in some circumstances.

In that case it was also held that, in England and Wales, prior court approval should be sought for the withdrawal of CANH in all such cases. This now also applies for patients in minimally conscious state (MCS).

A vegetative state is when a person is awake but is showing no signs of awareness; they may open their eyes, wake up and fall asleep at regular intervals and have basic reflexes; they’re also able to regulate their heartbeat and breathing without assistance.

A person in a vegetative state doesn’t show any meaningful responses, such as following an object with their eyes or responding to voices; they also show no signs of experiencing emotions.

Permanent vegetative state (PVS) is diagnosed if these features persist for more than six months if caused by a non-traumatic brain injury, or more than 12 months if caused by a traumatic brain injury. If a person is diagnosed as being in PVS, recovery is extremely unlikely but not impossible.

By contrast, somebody in a minimally conscious state (MCS) shows clear but minimal or inconsistent awareness and may have periods where they can communicate or respond to commands, such as moving a finger when asked.

Prof Derick Wade is one of the country’s leading experts in this area, a consultant in neurological rehabilitation based in Oxford. He estimates there could be as many as 24,000 patients in the NHS in England either in a permanent vegetative state, or minimally conscious.

Patients with PVS and MCS are severely brain-damaged but they are not imminently dying and with good care can live for many years. But if CANH is withdrawn, then they will die from dehydration and starvation within two or three weeks.

In such cases, doctors can withhold food and liquid – if they consider there’s no likelihood of improvement, and if the family agree. But to do that, they need to wait – six months for cases with brain injury caused by disease or a year in cases of traumatic injury (see diagnostic guidelines here).

Then the patient has to be assessed by a specialist unit, before being diagnosed as being in PVS or MCS. Then, the procedure is to seek permission from the Court of Protection to take out their feeding tube.

The applications are made by the local Clinical Commissioning Group (CCG) and usually cost around £50,000. Only about 100 such applications have been made in more than 20 years.

Two recent legal judgments have held that there is no requirement for treating clinicians to seek the court’s prior approval to withdrawing CANH for a patient in PVS or MCS where existing professional clinical guidance has been followed and where the treating team and those close to the patient are all in agreement that it is not in the patient’s ‘best interests’ to continue such treatment.

The Official Solicitor is contesting the second of these two judgements in the Supreme Court.

The first case concerned M, a woman who had suffered from Huntington’s disease for 20 years and was now in MCS.  It was argued that it was in M’s best interests not to continue to receive clinically assisted nutrition and hydration (CANH), with the consequence that she would die.

The application was supported by M’s family, her clinicians, and an external specialist second opinion. At a public hearing on 22 June, Justice Peter Jackson made the orders requested, giving short reasons and reserving fuller judgment. On 24 July, CANH was withdrawn from M, who then received palliative care, and on 4 August she died. She was 50 years old at the time of her death.

In his fuller judgement on the case on 20 September, which was widely reported in the press (see Guardian and Telegraph), Mr Justice Jackson said in future judges should not be required to make rulings in similar cases – where relatives and doctors were in agreement and medical guidelines had been followed.

The second case involved a 52-year-old man (Y), married with two adult children who in June 2017, suffered a cardiac arrest after a myocardial infarction (heart attack) as a result of coronary heart disease. It had not been possible to resuscitate him for well over ten minutes, resulting in severe cerebral hypoxia and causing extensive brain damage (See Guardian, Times (£) and full judgement (£)).

Mr Y had been in a prolonged disorder of consciousness since his cardiac arrest and, in July, was admitted to a regional hyper-acute rehabilitation unit under the control of the claimant NHS Trust.

Two medical experts with extensive qualifications and experience in the field of neurological rehabilitation agreed that Mr Y was in a very low level of responsiveness, he had no awareness of self or his environment, and it was highly improbable that he would re-emerge into consciousness.

The clinical team and Mr Y’s family, including his wife, Mrs Y, agreed that it would be in his best interests for clinically assisted nutrition and hydration (CANH) to be withdrawn, with the consequence that he would die within a period of two to three weeks.

The NHS Trust sought a declaration that there was no mandatory requirement to seek consent from the court to the withdrawal of CANH, which the court had upheld. However, the Official Solicitor has appealed this decision and, as noted above, the Supreme Court hearing is expected to take place on 29 January.

I was asked to comment at the time of the first hearing on 20 September and my words were later picked up by Life Site News.

I said that the court decision had set a dangerous precedent and should be appealed. Taking these decisions away from the Court of Protection removes an important layer of legislative scrutiny and accountability and effectively weakens the law.

This will make it more likely that severely brain-damaged patients will be starved or dehydrated to death in their supposed best interests and that these decisions will be more influenced by those who have ideological or financial vested interests in this course of action.

I think that the key issues legally and ethically separating right and wrong in end of life decisions are:

  1. What is the intention of this particular action or omission?
  2. We can say a treatment is futile (ie burden outweighs benefit measured in terms of cure/relief) but not that a life is futile

It seems to me that these recent decisions have been made with the intention of ending the life of a person who is not imminently dying because their life has been judged futile. This is a very dangerous precedent indeed.

Furthermore, there are still significant uncertainties about diagnosis and prognosis in both PVS and MCS. These have increased rather than decreased since the Bland case and this is why continued court endorsement of the withdrawal of life-sustaining nutrition and hydration in such cases is necessary. Well-intentioned people – relatives, carers and clinicians – often make mistakes about diagnosis/prognosis and accordingly, agreement between all of them about withdrawal of CANH is not adequate protection.

Life Site News noted that whilst starvation and dehydration certainly hasten death, this is not a painless procedure. In 2006, a British euthanasia activist gave up her own freely chosen attempt to starve to death after 19 days, saying it was too painful. ‘I would not wish what I have been going through on my worst enemy,’ Kelly Taylor said.

At the moment, because of the current policy of involving the court in all such cases, the number of cases we see are very few (fewer than 100 in over 20 years as noted above). But if the court were to be removed from the equation, this could very well lead to a huge escalation of cases, given how many people in Britain have either PVS or MCS.

Doctors are already moving in this direction as a recent article in the Journal of Medical Ethics argues. Furthermore, in the light of these recent court decisions, new interim guidance for health professionals in England and Wales has been issued by the BMA, Royal College of Physicians (RCP) and General Medical Council (GMC). They plan to publish new definitive guidance in May 2018 which will make this new direction official.

In their interim guidance they note however that it ‘may need revision if a case concerning these issues is considered by the Supreme Court’.

This is now happening and we await the hearing with great interest.

Categories: Discussion