On the withdrawal of hydration and nutrition, how far can we trust the NHS?

(Photo: Unsplash/Bill Oxford)

An article in the current issue of Clinical Medicine, published this week, raises serious questions about the way NHS Trusts withdraw Clinically Assisted Nutrition and Hydration (CANH) from unconscious patients.

The authors had sent Freedom of Information requests to 95% of the NHS Acute and Specialist Hospital Trusts and CCGs in England, to find out how many were applying key aspects of medical guidance dealing with these decisions.

Despite an 88% response rate, no Trusts or CCGs were found which had implemented certain basic recommendations made by doctors' professional bodies.

The significance of these findings will merit interest far beyond the medical community.

They should cause real concern to everyone who might one day find themselves in an NHS hospital without the mental capacity to give or refuse consent to CANH withdrawal, or who might have a loved one in that condition.

Clinically assisted nutrition and hydration

CANH has been regarded as 'medical treatment' since the House of Lords so decided in the 1993 case of Tony Bland.

As the Royal College of Physicians point out in their Guidelines on Prolonged Disorders of Consciousness (PDOC), "During the 25 years or so following the Bland judgment, more than 50 applications were made to the court ... Provided clinicians agreed that the patient was in permanent [Vegetative State], they had universally been allowed" (p98).

In 2018, the Supreme Court decided in An NHS Trust v Y that CANH could be withdrawn from patients in a vegetative state without reference to the courts, provided that "the provisions of the MCA 2005 are followed and the relevant guidance observed, and if there is agreement upon what is in the best interests of the patient".

Central to the Supreme Court's deliberations was the question of compliance with Article 2 of the European Convention on Human Rights, guaranteeing the right to life. As the European Court of Human Rights had repeatedly ruled, this compliance was dependent on "the existence in domestic law and practice of a regulatory framework compatible with the requirements of article 2" (para. 105 of the judgement).

The Supreme Court was satisfied that a regulatory framework was in place, comprising the Mental Capacity Act 2005 and its Code of Practice, together with professional medical guidance (paras. 105, 107).

Later in 2018, the RCP together with the BMA reflected the outcome of this case in new Guidance, also endorsed by the GMC. This document was an update of their 2017 Interim Guidance, which the Supreme Court had explicitly referred to as "undeniably part of the established regulatory framework" at that time, whilst anticipating the "final guidance planned for 2018" (again in para. 107).

So the updated 2018 guidance clearly formed part of the regulatory framework sought and identified by the Court.

This final Guidance makes clear that, "Decisions about CANH must be subject to regular review and audit as part of internal governance and external regulatory review procedures", and that CCGs "should ensure that deaths following withdrawal of CANH from patients who are not imminently dying are reviewed" in terms of "the process that was followed to assess the patient's best interests" (2.12).

Amongst the various factors which, again according to the Guidance, this best interests decision process should take into account are the patient's diagnosis, any pain or distress they are experiencing, their prospects of recovery, second opinions from independent clinicians, evidence of the person's wishes and any religious beliefs.

The Guidance includes a standard checklist which should be used to record the necessary consultations with family and friends, as a way of ensuring the procedural correctness of the decision.

This Guidance applies not only to patients in so-called "Vegetative States" (VSs), but also to those in Minimally Conscious States (MCSs), at the high end of which patients are close to (and will in some cases regain) full consciousness, as well as others suffering from dementia, catastrophic strokes, Parkinson's or Huntington's diseases.

In their separate Guidelines on Prolonged Disorders of Consciousness (including VSs and MCSs), the RCP makes the important point that, "A robust process is required to replace external scrutiny by the court ..." (4.7).

Freedom of Information results

None of the NHS Trusts or CCGs responding to Freedom of Information requests was keeping a local register of deaths resulting from CANH.

None was able to provide figures for such deaths which had taken place in either of the two previous years, suggesting that records of these events were not being kept in any other form.

None was able to confirm that internal or external audit of these deaths was being carried out, to ascertain (as queried in the information requests) "the degree to which there Is compliance with the BMA/RCP/GMC Guidelines, 2018, when such deaths occur".

Lawfulness of decisions

Unless withdrawals of CANH are being independently monitored, based on proper record keeping, their lawfulness can't be taken for granted.

Under the Mental Capacity Act 2005, best interests decisions about someone's life-sustaining treatment must not be "motivated by a desire to bring about his death", (section 4(5)). It is also made clear that "nothing in this Act is to be taken to affect the law relating to murder or manslaughter or ... assisting suicide" (section 62). Section 5 provides that, to avoid criminal liability, a best interests decision-maker (in these circumstances a doctor) must reasonably believe they are acting in a person's best interests.

So there is an absolutely vital distinction involved here between a valid best interests decision in accordance with the Act, and the unlawful taking of life.

The only way to confirm the lawfulness of these decisions is reviewing them independently in accordance with medical guidance.

In its 2017 Annual Report, the National Mental Capacity Forum reported that,

"Sometimes there seems [to be a] failure to recognise that such decisions must weigh in the balance whether the benefits of an intervention outweigh its risks and burdens and that such weighing up must not be motivated by a wish to bring about the person's death."

If NHS bodies are simply assuming that withdrawal of CANH is being carried out in accordance with the law, they are prejudging the results of the reviews which they should be carrying out.

This would amount to a deliberate policy of turning a blind eye to any unlawful 'life-shortening' which may be taking place beneath their radar.

CQC Regulation

Another Freedom of Information request was sent to the Care Quality Commission, enquiring whether they were reviewing these deaths so as to assess compliance with medical guidelines. The CQC responded that they did not hold the information requested.

As the Clinical Medicine article concludes, "It appears, therefore, that at the present time there is no systematic collection of data regarding deaths following withdrawal of CANH and the CQC is not actively monitoring such events".

We've noted the Supreme Court's decision that the regulatory framework essential for Article 2 compliance includes medical guidance. The research published in Clinical Medicine shows that parts of this guidance of central relevance to Article 2 are not only being ignored by NHS bodies, but are also not subject to regulation by the CQC.

In other words, the regulatory framework on which the Supreme Court relied in 2018, when it decided to exempt such cases from routine judicial scrutiny, does not appear to exist in any real sense.

A "regulatory framework" involving no active regulation hardly seems worthy of the name.

It must also surely be a matter of concern that the UK's Supreme Court considers the bare existence of medical guidance sufficient to constitute a "regulatory framework", regardless of whether medical practice is actually regulated against that guidance to verify its implementation.

As barrister Charles Foster has commented,

"If there is no way of knowing on a systemic level whether the Mental Capacity Act is being flouted by the Supreme Court's implicit guidance being ignored, it seems arguable that the state is in breach both of its positive and procedural obligations under Article 2."

National data collection

A previous edition of PDOC Guidelines was issued in 2013. In the Preface to that 100 page document, the RCP highlighted one single recommendation, "strongly endorsed by the RCP's Council", namely "the development of a national register and dataset", on which they envisaged that all patients in a VS or MCS would be entered.

The lack of any ensuing action was revealed when the same recommendation resurfaced seven years later, almost word for word, as part of the 2020 revision to these Guidelines (section 2.8), in which the RCP anticipated that the same national data would additionally include details of external scrutiny carried out on withdrawal decisions.

Establishment of a national register has also been favoured by the National Mental Capacity Forum. In their 2017 Annual Report, they commented that this "would allow auditing of how the guidelines are being followed and avoid the problems that were encountered with the Liverpool Care Pathway".

However, the Forum's 2019 Annual Report expressed disappointment that "there has not been any register established ... This is a lost opportunity ...".

As the RCP also point out in their 2018 CANH Guidance: "National data collection provides an important overview of practice across the country and can help improve practice as well as identifying trends that may need further investigation."

A question of trust

We'd all like to be able to have trust and confidence in the NHS to apply the safeguards provided by law and medical best practice for upholding the right to life of vulnerable patients.

But if NHS Trusts are unwilling to implement key aspects of medical professional guidance voluntarily, legislation making this a legal duty would now seem to be called for, and as a matter of urgency.

The article in Clinical Medicine highlights several specific risks which arise from a lack of proper scrutiny over these life and death decisions, including:

  • "Unrecognised lack of expertise" by clinicians, which "may result in the improper withdrawal of CANH",
  • "Conflicts of interest [between] parties involved in the best interests discussion", and
  • "The reliability of third party information [about] a patient's wishes".

As regards this last point, we looked in a previous articleat the consequences for the sanctity of life where unwarranted assumptions are made about a patient's wishes, based on poor quality information.

Health and Care Bill

In February, the government published its White Paper announcing a new Health and Care Bill for the current session of Parliament.

Amongst the Bill's stated purposes are improvements in accountability, patient safety and public confidence in the NHS. Its provisions are to include the creation of an independent Health Service Safety Investigations Body to follow up serious patient safety concerns.

But concerns about CANH withdrawal may be impossible to investigate fully, or may not even come to light at all, unless the proper local and national records are maintained, and routine internal and external reviews are carried out as laid down in medical guidance.

The government's new Bill could impose the necessary legal obligations on all concerned to ensure that the regulatory framework, which the Supreme Court assumed to be in place, becomes a reality.

This would enable any suspicious trends in particular hospitals to be identified and investigated, and any corner-cutting, negligence or downright "life-shortening" to be rooted out.

Only then will the government be able to demonstrate, and the public be reassured, that the right to life under Article 2 is adequately protected in our NHS hospitals.

A final caution

Summing up his findings as Chair of the Gosport Independent Panel in 2018, former Bishop of Liverpool Jim Jones wrote, "...at Gosport War Memorial Hospital, there was a disregard for human life and a culture of shortening the lives of a large number of patients by prescribing and administering 'dangerous doses' of a hazardous combination of medication not clinically indicated or justified" (page viii).

Bishop Jones reminded us that, "Handing over a loved one to a hospital, to doctors and nurses, is an act of trust and you take for granted that they will always do that which is best for the one you love. It represents a major crisis when you begin to doubt that the treatment they are being given is in their best interests" (page vii).

Exactly the same can be said when treatment that you believe is in a loved one's best interests - and 'treatment' here may include CANH - is denied them.