Withdrawing life-prolonging treatment
25/08/2004
Thank you for all your time and excellent work and rest assured that if myself or family or friends require any legal help in the future I will refer them to yourselves.
Michael, Crawley
On the 30th of July a patient won his legal challenge to prevent doctors withdrawing life-prolonging treatment at the High Court in London. Head of Public Law, Douglas Silas provides a summary of the judgment, which runs into 94 pages. An important ruling Douglas believes that a far higher number of cases will need to come before the Court in future years to decide whether treatment should be withdrawn from a patient or not.
This was a Judicial Review Claim brought by Mr Burke against the General Medical Council (GMC). Mr Burke ('the Claimant') suffers from a condition known as 'Cerebellar Ataxia'. This is a congenital degenerative brain condition, which follows a similar course to multiple sclerosis. Mr Burke is 44 years old and was diagnosed when he was 22. Whilst he is already dependant on a wheelchair for mobility and has uncoordinated movement which affects his speech, his mental ability is not impaired, nor is his capacity to make decisions.
The Claimant argued that the GMC's Guidance on 'Withholding and Withdrawing Life Prolonging Treatments: Good Practice and Decision Making' was incompatible with The Human Rights Act. The Guidance was published in August 2002 (and runs to over 20 pages and was produced following consultation with a wide range of medical, legal, ethical, religious, patient and disabled people groups).
Mr Burke challenged specific parts of the Guidance arguing that they were incompatible with his rights under Article 2 (Right to Life), Article 3 (Right to Freedom from Inhuman or Degrading Treatment), Article 6 (Right to a Fair Trial), Article 8 (Right to Privacy and Family Life), and Article 14 (Right to not be Discriminated Against) of the European Convention of Human Rights ('ECHR').
The evidence before the court was that in time to come, the Claimant's medical condition would deteriorate to the point where he would require Artificial Nutrition and Hydration ("ANH"). However, the guidance at a number of points gave the impression that the decision on whether to withdraw ANH would be one primarily taken by a doctor on the basis that in medical opinion the patients condition may no longer be worth living (although taking into account the views of the patient).
General Findings
In the High Court, Mr Justice Mumby, over three days, heard submissions and evidence not only on the Claimant and Defendant's behalf but also from witnesses on behalf of the Official Solicitor (as intervener) and the Disability Rights Commission ('DRC') (as an interested party). He then reserved his Judgement until receiving further written submissions following the European Court of Human Rights decision in Glass v United Kingdom.
In his written Judgment, he made it clear that this was not a case about the prioritisation or allocation or resources, whether human, medical or financial and it was also not a case about innovative, experimental or untested forms of treatment. He praised the Guidance generally but subjected it to detailed scrutiny in light of Mr Burke's claim, although he said it was not his job to write a textbook or practice manual or give advisory opinions.
In his written statement he summarised the issues before him in two ways:
1.The circumstances in which it would be lawful for doctors to withhold or withdraw ANH; and
2.The circumstances in which (if at all) that decision must first be referred to a court.
The Judge drew a distinction between patients who are 'competent' (or who are incompetent and who have made an advance directive which is valid and relevant to the treatment in question) on the one hand, and those patients who are 'incompetent' but who have not made such an advance directive. He noted that the latter group would normally have treatment decisions determined by reference to their 'best interests'.
He also drew a distinction between patients who are 'incurable', those who are 'terminally ill', and those who are 'dying'. He noted that in his final days, Mr Burke, though potentially unable to communicate, may still have an appreciation of his predicament before he lapses into a semi-comatose condition before ultimately dying.
The Judge highlighted the concept of the sanctity of life and the principle of self-determination. He also affirmed that existing case law had established that a mentally competent patient has an absolute right to refuse to consent to medical treatment for any reason, irrational or rational, or for no reason at all, even where that decision may lead to his or her own death (see case of Re MB (medical treatment) [1997]).
He noted that recognition and protection of human dignity was one of the core values of our society and that personal autonomy and dignity were both aspects of 'private life' protected by Article 8 (see case of Pretty v UK [2002]).
Then, following a very detailed analysis of existing UK and European Case Law, including the Common Law 'duty to care' obligation of an NHS Hospital, he reiterated that the tests of 'best interests' were not just limited to best medical interests but also encompassed medical, emotional and all other welfare issues (see case of Re A (male sterilisation) [2000]).
In quoting extensively from cases such as the 'Anthony Bland' decision from the House of Lords in 1993 through to recent "best interests" cases decided by Dame Butler-Sloss (as President of the Family Division) he concluded that either the doctors or the Court had to decide what is in a patient's best interests if a patient was incompetent and has not made an advance directive.
However, he noted that the mere fact that a patient was physically and mentally disabled is not, of course, any reason for withholding life prolonging treatment and accepted the DRC's argument that the assessment of 'best interests' had to be made from the point of view or perspective of the particular patient and that best interests in this context would be related to 'intolerability' (i.e. that ANH should be provided unless the patient's life, would from the patient's point of view would be intolerable).
Interim Conclusions
At paragraph 116 of the Judgment he then summarised his interim conclusions in relation to the existing law as follows:
1.When a patient is admitted into his hospital a duty to care arises to provide treatment whether the patient is competent, incompetent, conscious or unconscious;
2.Once the duty to care has arisen there is an obligation that cannot lawfully be shed by the doctors or hospital unless arrangements are made for the responsibility to be taken over by someone else;
3.The duty and care is to provide treatment in the 'best Interests' of the patient;
4.Best interests must take into account ethical, social, moral, emotional and welfare considerations;
5.Whilst doctors may have expertise on medical matters they have no special expertise on non-medical matters. Medical opinion, however eminent, can therefore never been determinative of a patient's best interests;
6.If the patient is competent it is for them to determine what is in their own best interests;
7.If the patient is incompetent (and has given no advance directive) then it is for the Court to decide what is in their best interests;
8.Personal autonomy and dignity are protected by Articles 3 and 8 of the ECHR including choosing how one manages ones own death and being protected from treatment (or lack of treatment) which will result in one dying in distressing circumstances;
9.A competent patient (or incompetent one who has given an advance directive) can determine what life prolonging treatment he should or should not have. Sanctity of life must take second place to personal autonomy; and
10.Where best interests are being decided there is a very strong presumption in taking all steps which will prolong life although this is not always absolute.
The Judge then undertook a further analysis of the various Articles of the ECHR raised before applying them to the actual issue of withdrawal of ANH (see paragraph 178). He reached further conclusions as follows:
(1)Articles 3 and 8 are engaged and are enhanced where a patient is vulnerable;
(2)Treatment can be 'degrading' within Article 3 whether or not there is awareness on the part of the victim as it should be judged by the standard of what a right-thinking bystander would consider "humiliating, debasing the victim, showing a lack of respect for, or diminishing his or her human dignity";
(3)Failure to provide life prolonging treatment where a patient is already reliant on the medical care he is receiving would breach Article 3 where, if the care is removed, it may cause acute mental and physical suffering or lead to dying in distressing circumstances. Even if this does not breach Article 3 it may breach Article 8;
(4)Article 8 requires the patient not the doctor to decide what treatment should or should not be given. However, Articles 2 and 3 do not entitle anyone to force life-prolonging treatment on a competent patient who does not wish to accept it
Although the Judge recorded the fact that a doctor still cannot be required to undertake any treatment he does not, in his clinical judgement, wish to provide, he pointed out that their duty is still to find other doctors who will do so. He also noted that whilst some medical procedures may not be unlawful in themselves they might require the sanction of the court before being given.
Applying the legal finding to the Guidance
The Judge then finally turned to the specific parts of the Guidance under attack. He concluded that the emphasis throughout the Guidance was on the right of a competent patient to refuse treatment rather than to require it. In so doing, whilst he pointed out that there is no legal obligation to provide treatment which is contrary to the doctor's clinical view. The Guidance failed to acknowledge the heavy presumption in favour of life prolonging treatment from patients who may not be dying but who are just in a very serious condition.
He concluded that this could cause them suffering and be against what they believed their best interests to be. He therefore held that the determination of best interests should be done by a court in most situations and therefore concluded that the Guidance was wrong and that Mr Burke's claim should succeed, although he invited his lawyers to reconsider the precise terms of the declarations that they were seeking.
Analysis
Whilst in many ways this judgement seems to be more theoretical than practical because Mr Burke was not actually dying at the time, it is still an extremely important judgement that I am sure will be relied on in time to come. Whilst the GMC will now be required to alter their Guidance, this judgement also points out how important it will be for these types of cases to come before the Court when deciding on a patient's best interests.
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