The British Medical Association have put forward proposals in response to legal test cases in which judges ruled that qualified NHS staff and officials no longer required a court’s permission to withdraw artificial nutrition and hydration from those patients who are incapacitated and unable to communicate or feed themselves.
The Supreme Court justices’ decision in July supported the right of doctors to withdraw life-sustaining nutrition on their own authority, provided they had the explicit permission of the patient’s family or, where no family existed, medical proxy. If there is a disagreement and the decision is finely balanced, an application should still be made to the Court Of Protection.
The Court of Protection is the specialist court for all issues relating to people who lack capacity to make specific decisions. The court can make decisions and appoint deputies to make decisions about someone’s property and financial affairs or their healthcare and personal welfare.
• make decisions about the personal welfare or property and financial affairs of people who lack the capacity to make such decisions themselves;
• make declarations about a person’s capacity to make a decision;
• make decisions in relation to serious medical treatment cases, which relate to providing, withdrawing or withholding treatment to a person who lacks capacity;
• authorise deprivation of liberty in relation to a person’s care and residence arrangements;
• appoint a deputy to make ongoing decisions on behalf of a person who lacks capacity, in relation to either the person’s personal welfare or property and financial affairs; and
• make decisions about a Lasting Power of Attorney or Enduring Power of Attorney, including whether the power is valid, objections to registration, the scope of the attorney’s powers and the removal of attorney’s powers
According to the draft proposals currently being circulated by the British Medical Association (BMA), doctors should be granted the authority to end the lives not only of those patients who are near death or in vegetative or minimally conscious states but also “the much larger group of patients who have multiple co-morbidities, frailty or degenerative neurological conditions.”
This also includes stroke patients and those with “rapidly progressing brain injury.”
However, on the NHS site, it says: “In most cases, a minimally conscious state isn’t usually considered to be permanent until it’s lasted several years.
“It’s impossible to predict the chances of someone in a state of impaired consciousness improving.”
“Supportive treatment is used to give the best chance of natural improvement.
“This can involve:
- providing nutrition through a feeding tube
- making sure the person is moved regularly so they don’t develop pressure ulcers
- gently exercising their joints to prevent them becoming tight
- keeping their skin clean
- managing their bowel and bladder (for example, using a tube known as a catheter to drain the bladder)
- keeping their teeth and mouth clean
- offering opportunities for periods of meaningful activity – such as listening to music or watching television, being shown pictures or hearing family members talking.”
And importantly: “It’s impossible to predict the chances of someone in a state of impaired consciousness improving.”
The authors of the BMA document say: “Due to the degenerative nature of their condition, these patients are on an expected downward trajectory and will inevitably die, usually as a result of their underlying condition, although perhaps not imminently and could, potentially, go on living for many years.”
In the Executive Summary of the BMA document, it says that no second opinion need be obtained unless there is ‘reasonable doubt about the diagnosis or prognosis, or where the healthcare team has limited experience of the condition in question’ [ …] ‘it is not necessary to wait until (investigations) have been completed’ if there is not ‘sufficient evidence’ that they will ‘affect the outcome of the best interests assessment’
Nutrition and hydration delivered by tubes is currently legally defined as ‘medical treatment’ and not ‘basic ‘care’.
There have been a number of legal developments that change the way such decisions about life-prolonging treatments are made, in addition to the recent court judgments and the government’s radical withdrawal of the Court of Protection’s Practice Direction 9E which addresses protections concerning serious medical treatment.
The direction was effectively abolished by the Ministry of Justice and the changes came into effect last December. The Court of Protection in English law is a superior court of record created under the Mental Capacity Act 2005. It has jurisdiction over the property, financial affairs and personal welfare of people who lack mental capacity to make decisions for themselves.
As the changes to protections were introduced via secondary legislation – a negative resolution statutory instrument – there was very little parliamentary scrutiny. Furthermore, as the instrument is subject to negative resolution procedure no statement regarding implications in relation to the European Convention on Human Rights was required from government ministers, nor was public consultation deemed necessary. An Impact Assessment has not been prepared for this instrument.
The fact that the UK government had already made amendments to safeguarding laws to accommodate these proposals, which took effect last December, and now plan to make it easier to remove people’s liberty under the Mental Health Act without public consultation, has caused deep unease. In the latest proposed changes to the Mental Health Act, the government seems to think it is appropriate to consider restrictions of people’s liberties as part of their overall ‘care package.’
The Law Society has issued a rather damning briefing on the Mental Capacity (Amendment) Bill 2018 that moved to a Lords committee stage, early last month.
In their briefing, the society say: “While agreeing that simplification is needed and acknowledging that there are resource constraints, these constraints are “insufficient justification for not implementing fully the safeguards recommended by the Law Commission.”
It is in light of the most recent change in legislation that the British Medical Association (BMA) put forward proposals that mean doctors may be permitted to end the lives of patients who may otherwise have survived for years, by the withdrawal of nutrition and hydration, without the need to go to court. While this reduces substantial cost to the NHS in terms of legal fees and in the prolonged treatment for some patients, not everyone is comfortable with these developments.
Writing critically about the legislation changes last year, Mohamed Y Rady and Joseph L. Verheijde say:
“(1) starvation and dehydration is certain to cause death without the presence of concurrent life-limiting disease or life-threatening illness and (2) the dying process by starvation and dehydration can last two to three weeks and can be distressful to both patients and their families. We disagree with the legal and clinical stipulation (post-Bland [a legal case]) that assisted nutrition and hydration (ANH) is medical treatment. Instead, as adopted in many other jurisdictions, we hold that ANH constitutes ‘a basic compassionate care service rendered to disabled persons’.
“We think that court oversight is of practical importance for the safety of the general public and the protection of vulnerable disabled persons in society.
“We outline our rationale for advocating that court oversight should not be limited to Vegative State/Minimal Conscious State but should include any person.”
The authors added: “The clinical guidelines have distinguished only three levels of disorders of consciousness (DOC) (coma, Vegative State (VG), and Minimal Conscious State (MCS) based on clinical assessment for the presence or absence of awareness and wakefulness. However, the diagnostic accuracy of the guidelines’ criteria and definitions of the three levels of DOC has not been validated scientifically. Cohort studies suggest that the rate of clinical misdiagnosis in VS is at least 41% and this error rate has not declined over the past 15 years.
“Incorrect diagnosis can result in a fatal outcome because of premature withdrawal of medical care and ANH. The clinical guidelines have not yet acknowledged the relevance of contemporary neuroscience advances to increase the diagnostic accuracy and expand on the available therapeutic options in DOC. Incorrect diagnosis and/or withholding of therapy in DOC violates the trust of families in the transparency and truthfulness of clinicians who are making life and death decisions on behalf of their loved ones.
“The clinical guidelines have recommended that a neurological diagnosis and prognosis should be made at least within four weeks after the onset of prolonged DOC to determine futility of continued medical care and ANH (Royal College of Physicians of London. Under these circumstances, we propose that court oversight can provide an additional safeguard by including independent neuroscience experts to confirm the clinical diagnosis and prognosis of DOC and to ensure that the decision-making processes are well-informed and as rigorous as possible. Life and death decisions in DOC should be supported by contemporary neuroscience, among other considerations, and not be based on outdated clinical guidelines.”
In summary, the authors propose that until such time as we have greater clarity and understanding about the disorders of consciousness, and about the legal and ethical principles to be applied, there remains a need for independent oversight and that applications to the court should continue to be obligatory in all cases where the withdrawal of ANH is proposed, at least for the time being.
Their paper can be read in full here.
The BMA proposals to withdraw nutrition and hydration tubes have also been condemned as ‘euthanasia by stealth’.
Dr Peter Saunders, from the group Care Not Killing, said: “This is a recipe for euthanasia by stealth, but all in the name of autonomy and best interests – the very worst kind of doctor paternalism justified on the grounds that the patient would have wanted it.
“There are conceivably tens of thousands of patients in England and Wales who are vulnerable to the use and abuse of this guidance.
“It will be almost impossible to work out what has happened in a given case and there are no legal mechanisms in place for bringing abusers to justice.”
The landmark Bland ruling set down that artificial nutrition and hydration by tube are not normal feeding but ‘medical treatment’. It also said that it might not be in a patient’s best interests to be treated, and if medical treatment is not in the best interests of a patient who cannot speak for themselves, it can be stopped. Tony Bland, a Liverpool football supporter was just twenty-two when he suffered severe brain damage in the crush at Hillsborough football stadium in April 1989. The court ruled that he should be allowed to die.
The BMA document was circulated, however, in June. This follows after a court ruling in 2017, which concluded that there was no requirement for court approval before removing patients’ nutrition and hydration tubes.
More recently in July, the country’s highest appeal court, the Supreme Court, ruled in the test case of a patient known only as ‘Y’ that doctors can decide a patient should die without reference to a court.
A spokesman for the BMA said that decisions surrounding the withdrawal of clinically assisted nutrition and hydration (CANH) presented “clinical, ethical and legal challenges.”
He added: “Following a number of legal developments, the BMA has been working with the Royal College of Physicians and the General Medical Council to produce guidance on best practice for health professionals when facing decisions about CANH.
“CANH is a form of medical treatment. The aim of medical treatment is not simply to prolong life at all costs, and the courts have been clear that in some circumstances it will not be in the best interests of the individual patients to receive it.
“Those making these decisions must do so in full dialogue with families to determine what is right for the individual patient, and of course, when there is any disagreement the court still has an important role to play.”
These proposals come at a time when health care has been subjected to increasing rationing.
The BMA document says that the decisions on removing nutrition and hydration tubes should be taken by consultants for hospital patients, or GPs for those in nursing or residential homes or living in their own homes. It was suggested that families or friends should be consulted, usually through ‘best interests meetings’ set up to decide whether it would be better for a patient to live or die. However, the BMA suggested that family and friends should not have the final say on the matter.
In the Executive Summary, the BMA say that no second opinion need be obtained unless there is ‘reasonable doubt about the diagnosis or prognosis, or where the healthcare team has limited experience of the condition in question’ [ …] ‘it is not necessary to wait until (investigations) have been completed’ if there is not ‘sufficient evidence’ that they will ‘affect the outcome of the best interests assessment’
Shockingly, the BMA also propose that when patients die after the withdrawal of nutrition and hydration tubes, this should not be mentioned on death certificates. Instead only the underlying original condition should be given.
Professor Patrick Pullicino, from East Kent Hospitals University NHS Trust, said that this “directs doctors to falsify death certificates. It tells doctors to put down the pre-existing condition and not that they died of dehydration. It will totally conceal the statistics of patients who are being dehydrated to death.”
Understandably, doctors and campaigners who are opposed to euthanasia and the deliberate termination of life by medical staff have condemned the proposals.
Pullicino, who is the consultant that helped expose the controversial hospital deaths under the discredited Liverpool Care Pathway, said the BMA plan was ‘terrible’.
He added: “It codifies current practices of withdrawing food and fluid at the end of life and thereby encourages it.
“It facilitates the extension of end-of-life pathways to people with neurological diseases who are not dying, which is a very negative thing because there are a lot of disabled neurological patients.
“It perpetuates the myth of ‘best interests’, which has been shown to be erroneous and reflective of members’ views and not of the real best interests of the patients.”
I agree. My inital thoughts are that we need to guarantee people with disabilities have access to high quality palliative care. We need to have a process which reviews every incidence of proposed euthanasia, and that panel needs to include people with disabilities. We need to ensure that family members and service providers or anyone else who will benefit financially cannot abuse any application for end of life withdrawal of clinically assisted nutrition and hydration.
We also need to ensure the absolute transparency and accountability of decision-makers, which must include an accurate and honest record of cause of death on death certificates. Coroners have a duty to prevent future deaths, where medical mistakes have been made.
There is no clear definition of ‘degenerative diseases’ in the BMA document. Some illnesses, such as multiple sclerosis, lupus and other autoimmune mediated diseases, for example, may be progressive. Several of these illnesses may affect the neurological system. Most of the treatments for this group of disorders are experimental. People can improve over time, with or without some treatments, following periods of being critical ill. Many of the treatments are only prescribed as a last resort, as they are prohibitively expensive (biologics in particular) especially at a time of heavy NHS funding cuts. The outcomes of these diseases are widely variable from one person to the next. People may have indefinite remissions after years of being seriously ill.
Even if these types of disease are not currently included in the BMA guidelines, complications or co-morbidities and frailty arising over the course of an illness may be.
What guarantee do we have that the categories won’t expand over time?
The legislative changes have been couched in terms of ‘saving money’. The purpose of the NHS is to save lives. Everyone has the basic right to life, that must not be contingent on the ideological preferences of a ‘small state’ neoliberal government. ‘Best interests’ are not an political category, nor are they open to ideological interpretation.
The UK government’s brand of ideological paternalism towards poor people claiming welfare support, for example, involves the removal of the means of meeting basic survival needs as a punishment in the form of sanctions, also considered to be in people’s ‘best interests’.
Unemployment itself has been redefined as a psychological or character disorder over the last few years, and the welfare state has become a political environment for administering discipline, which has shifted it away from the original purpose of providing basic support and alleviating poverty. Behavioural economics has contributed to bolstering this perspective by pathologising people who need support from publicly funded public services via claims of ‘cognitive deficits’ of poor people, rather than acknowledging the structural explanations of poverty. Perish the thought that a socioeconomic system founded on competition would foster inequality.
In healthcare there has been a shift towards ‘behavioural medicine’ too, apparent in the controversial PACE trial and a general emphasis on people’s ‘lifestyle choices,’ and personal responsibility. However these are extremely overly simplistic ideolological narratives that have not emerged because of robust empirical evidence. Public services were not originally designed to punish poor people who need them. Yet the withdrawal of the means of citizens meeting their basic survival needs seems to have become normalised. Pathologising and punishing people who need the support of public services has somehow become acceptable.
The increasing rationing of treatments within the NHS and the neoliberal logic underpinning this is also a cause for concern. People who need support from any public service are subjected to increasing conditionality and rationing in an era of neoliberal austerity.
“Those making these decisions must do so in full dialogue with families to determine what is right for the individual patient, and of course, when there is any disagreement the court still has an important role to play.
“We shared the draft guidance in confidence with legal and health professionals and organisations and patient support groups to seek their views. The final version will reflect last month’s Supreme Court judgment when it is published this year.”
The guidance says it is based on the current legal position which it defines as follows:
- Clinically assisted nutrition and hydration (CANH) – essentially food and fluids by a fine tube through the nose or through the skin into the stomach – is a form of medical treatment
- Treatment should only be provided when it is in a patient’s ‘best interests’
- Decision makers should start from the presumption that it is in a patient’s best interests to receive life-sustaining treatment but that presumption may be overturned in individual cases
- All decisions should be made in accordance with the Mental Capacity Act 2005 (which the government is proposing to amend).
The 77-page ‘confidential’ document, which is currently out for ‘consultation’ (although only to a few selected individuals), has been prepared by the BMA in conjunction with the Royal College of Physicians (RCP) and the doctors’ regulatory authority, the General Medical Council (GMC). It will not be open for public consultation at any point before publication later in the autumn.
The draft guidance, which builds on case and statute law and on previous practice guidelines, has huge implications for the care of some of the most vulnerable people in England and Wales.
However, it does not permit assisted dying – which is when a patient wants to end their life. British parliaments have consistently refused to legalise active euthanasia or assisted suicide for people with a quality of life they would not find ‘acceptable’ or would not ‘have wanted’. The BMA is proposing that doctors, not patients should make the choice to end a life, and that to end lives by starvation and dehydration, rather than with a lethal injection, is somehow perfectly acceptable.
So acceptable in fact that the BMA propose starvation and dehydration or withdrawal of care (or treatment if you wish) should be left off the death certificate, suggesting instead that the ‘underlying medical condition’ should be recorded as the cause of death. This suggestion does not inspire confidence in transparency and accountability concerning such fundamentally irreversible medical decisions, since the record of death hides errors in judgment and diagnoses, prevents scrutiny and prevents coroners from fulfilling the mandatory obligation to ‘prevent future deaths’ in the case of medical incompetence, negligence, abuse, deceit and error.
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