Withdrawing and withholding artificial nutrition and hydration from a patient in a minimally conscious state (Re: M)

In the summer of 2011 the Court of Protection ruled that it would be unlawful to withdraw artificial nutrition and hydration (ANH) from a woman, M, who had been in a minimally conscious state (MCS) for 8 years after contracting viral encephalitis at the age of 43 years.1 It was reported as the first English legal case concerning the withdrawal of ANH from a patient in a MCS. Although the judge sought to limit the judgement as closely as possible to the facts of the case, it is likely to have a significant impact on treatment decisions in relation to life-sustaining treatment for people in states of low awareness.

Under the Mental Capacity Act 2005, decisions made on behalf of adults lacking capacity in England and Wales need to be made on the basis of an assessment of their best interests. The only exception to this is when there is a valid and applicable advance directive refusing the treatment in question. As M had made no advance directive, it fell to the court to make the decision in her best interests. Quoting case law, the court held that, with the exception of patients in a persistent vegetative state, decisions of this kind must be made by adopting a ‘balance sheet’ approach, comparing ‘the advantages of withdrawing ANH against the advantages of continuing with the treatment’ (para 246).1

The judgement draws heavily on the case of Bland.2 Anthony Bland had severe brain damage after being crushed during the Hillsborough Stadium disaster in 1989 and was subsequently in a persistent vegetative state from which there was no hope of recovery. The court extracted the following principles from Bland:

• The principle of sanctity of life is fundamental.

• That principle is not absolute and may yield in certain circumstances.

• A decision about withdrawing ANH must be determined by what is in the best interests of the patient.

• In the great majority of cases the best interests of the patient will require that treatment should be given.

• In some cases the decision whether to withhold treatment would be made by weighing up relevant and competing considerations.

• In Bland such an approach was inappropriate as the treatment in question was ‘futile’.

Counsel acting on behalf of M argued that the decisive factor in this case should be M's previous wishes and feelings and not the principle of the sanctity of life. M's family were strongly of the view that M would have rejected her current treatment, in particular they cited her views that someone in the condition of Anthony Bland should be allowed to die. Counsel argued that, ‘according true respect to M's autonomy requires the court to consider seriously what M's view would have been, even if it cannot be conclusively determined, and to give it substantial weight’ (para 225).1 Although the more specific the statement of previous wishes the more weight it would carry, counsel argued that it did not necessarily follow that more general statements should be set aside. The court disagreed, arguing that although both M's former wishes and feelings and the wishes of family members and carers need to be taken into account, neither would be determinative in this case.

As her life did contain some positive pleasures, and there was every possibility that these could be increased by enhanced care, in the court's view the sanctity of life was the determining factor and it would not be in M's best interests for ANH to be withdrawn. With regard to future care, the court proposed that a declaration be made that her current ‘do not resuscitate’ order should continue. It distinguished this from the decision regarding ANH because of the likelihood, even if cardiopulmonary resuscitation were successful, of her brain sustaining further damage from hypoxia. With regard to decisions relating to other treatments, such as antibiotics, these should be left to the treating clinicians in relation to the specific conditions as they arise.

In his concluding observations, Baker LJ made the following recommendations for future cases:

• In accordance with paragraph 5 of Court of Protection Practice Direction 9E, all applications to withhold or withdraw ANH from a patient in a vegetative state or MCS must be made to a High Court judge.

• No application for an order authorising the withdrawal of ANH from a patient in a vegetative state or MCS should be made unless (1) a Sensory, Modality Assessment and Rehabilitation Technique (SMART) or similarly validated equivalent assessment has been carried out, and (2) in the case of a patient thereby diagnosed as being in a MCS, a series of Wessex Head Injury Matrix (WHIM) assessments have been carried out over time with a view to tracking the patient's progress.

Payment for ‘donation’

There has been a lot of debate in the UK recently about whether ‘donors’ of organs, gametes, tissue and blood, as well as participants in clinical trials, should be paid and, if so, how. On 11 October 2011 the Nuffield Council on Bioethics published a report, ‘Human bodies: donation for medicine and research’, setting out its thinking, following an 18-month inquiry.3 This made a number of recommendations including the payment of funeral expenses for those on the Organ Donor Register who donate organs after their death, the removal of the upper limit of £250 for loss of earnings for egg donors, and explicit payment for the donation of gametes for research in line with participation in first-in-human clinical trials. A week later the Human Fertilisation and Embryology Authority—following its own review and consultation—announced its decision to allow the payment of £750 for egg donors and £35 per clinic visit for sperm donors (for both treatment and research).4

In analysing the issues the Nuffield Council on Bioethics uses an ‘intervention ladder’ setting out six levels of intervention. Levels 1–4 are referred to as ‘altruist-focused interventions’, which act to ‘remove disincentives from, or provide a spur to, those already inclined to donate’ and levels 5 and 6 are ‘non-altruist-focused interventions’ in which ‘the reward offered to the potential donor is intended alone to be sufficient to prompt action’ (pp 5–7).3 The report makes clear, however, that the step from altruist-focused to non-altruist-focused interventions should not be seen as moving from ethical to unethical, although non-altruist-focused interventions may require more careful consideration. The six levels are:

1. Providing information about the need for donation.

2. Recognition of, and gratitude for, donation.

3. Removal of barriers to donation among those already disposed to donate.

4. An additional prompt or encouragement for those already disposed to donate.

5. Benefits in kind to encourage those who would not otherwise donate.

6. Financial incentives that leave people better off by their decision to donate.

The conclusions of the two organisations are very similar. Both organisations highlight the need for organisational improvements to aid recruitment and retention of donors through the provision of more information and the promotion of gamete donation as well as practical changes designed to improve the way donors are treated and valued; these types of changes fall into levels 1 and 2 of the intervention ladder. Both organisations also recommend removing the upper limit of £250 for compensation for donors, which, although designed to recompense for loss of earnings and expenses, they believe results in egg donors being out of pocket as a result of their decision to donate. This falls into level 3. Both organisations also support the continuation of the use of ‘egg sharing’ arrangements whereby a woman agrees to donate some of her eggs in return for free or reduced price treatment. The Nuffield Council on Bioethics acknowledges that this falls into level 5 of its intervention ladder and is therefore a non-altruist-focused intervention.

The report recommends that in considering whether offering some form of non-altruist-focused intervention would be harmful, factors that should be considered include the welfare of the donor, the welfare of others closely involved, the potential threat to the common good and the professional responsibilities of the health professionals involved. With egg sharing it argues that women do not undergo any additional risk as a result of their decision to participate in an egg-sharing arrangement and that their chance of becoming pregnant as a result of the transfer of fresh embryos is not reduced (although the cumulative pregnancy rate will be lower because fewer ‘spare’ embryos will be available for storage and future transfer). Also relevant is the fact that the benefit in kind is closely associated with the material donated and that, it can be argued, the benefit received is not financial but the opportunity to have a child. It is interesting, however, that having provided this justification for permitting a benefit in kind, in terms of maintaining the status quo, the report explicitly rules out introducing any new forms of non-altruist-focused interventions before other interventions lower down the ladder have been fully explored.

The Nuffield Council on Bioethics goes further than the Human Fertilisation and Embryology Authority in recommending that those who donate eggs for research should be paid, in the same way as participants in first-in-human trials. This takes the intervention to level 6. In this case, it argues, that when there are no clear recipients of the donated material a move away from an altruistic model may not present a risk of undermining social solidarity. The relevant value in such situations is one of justice—if donors are willing to donate in order to promote scientific knowledge it is only fair that their contribution should be recognised and remunerated.

In relation to gamete donation and its other recommendations, the Nuffield Council on Bioethics stresses that altruism and social solidarity remain key elements of donation even when some form of payment is given: ‘systems based on altruism’ it says, ‘and systems involving some form of payment are not mutually exclusive’ (p 132).3 The intervention ladder helps to illustrate this point and provides a useful tool for assessing proposed interventions. Not everyone will agree with its conclusions and recommendations, but the Nuffield Council on Bioethics, in its long and detailed report, has certainly provided food for thought.

Lack of communication about non-resuscitation decisions

Patients should generally be consulted before having a do not attempt resuscitation (DNAR) order made. If it is impossible, or inadvisable for some reason, to discuss it with the patient, people close to the individual should be consulted. Controversy arose in October 2011 regarding the degree to which patients—particularly older people—and their relatives were continuing to be routinely excluded from such decisions in hospitals.

The report of the NHS Ombudsman for England noted that 15 186 complaints had been resolved during the year. A significant proportion of these were generated by poor communication leading generally, according to the Ombudsman, Ann Abraham, to the unnecessary exclusion of patients and their families ‘from a full awareness of the patient's condition or prognosis’.5 A typical case highlighted in the report concerned the placing of a DNAR order on an 85-year-old patient when he was admitted to Cheltenham General Hospital after a fall. He was transferred briefly to another hospital but returned to Cheltenham General after contracting pneumonia and another DNAR order was made. In both cases, the orders were made without discussion with the patient or his family. After his death, the relatives complained that they had been told his condition was not immediately life threatening although the death certificate showed he was known to have had terminal bladder cancer. In her analysis of the case, the Ombudsman said it highlighted the importance of good communication. The patient should have been told about the severity of his condition and asked if he wanted his family to be updated, rather than being kept ignorant of his deteriorating health. Following the case, the Trust drew up plans for communication training for its medical and nursing staff.

In the same month, the charity Action on Elder Abuse trawled through the findings from the Care Quality Commission's (CQC) inspections of 100 English hospitals, which focused on patient nutrition and dignity.6 It highlighted, among other failings, how older patients and their relatives were excluded from such discussions. At least five hospitals were shown to breach guidance to involve patients or families in DNAR decisions. The charity criticised ‘the casual disregard of national DNAR guidance’, noting that DNAR forms were sometimes routinely inserted into older patients' files on admission, or decisions were left to junior doctors who did not discuss the issue with patients or their families. In one case inspectors found a notice from a previous admission, still wrongly active in a patient's files.

The CQC also criticised York Teaching Hospital NHS Trust for breaching its own DNAR guidelines.7 CQC inspectors identified several anomalies that meant that some patients might have out of date DNAR orders, and they also found a lack of evidence that patients, or relatives closely involved in their care, had been consulted when such orders were made. Medical staff agreed on the desirability of discussion with patients or their next of kin but found it a difficult topic and said that decisions to make a DNAR were often taken when relatives were unavailable to talk about them.

Justice Committee calls for custodial sentences for data breaches

In October 2011, the UK's Justice Select Committee published a report recommending increased powers be given to the Information Commissioner to investigate and punish breaches of the Data Protection Act 1998.8 The committee backed the UK Information Commissioner's ongoing calls for the introduction of custodial sentences to punish individuals found guilty of illegally obtaining and selling personal data. The report's findings immediately preceded the release of figures, obtained under the Freedom of Information Act 2000, which showed there were at least 806 incidents between July 2008 and July 2011 in which the confidentiality of medical records was compromised.9

The report states that current fines, sometimes as low as £50 per breach, are an ‘inadequate’ deterrent when the financial gain exceeds the penalty. In one case a nurse was providing patient details to her partner who worked for an accident management company. She was fined £150 per offence, but gained up to £900 per incident from the accident management company (para 4).8 Cases were also highlighted in which the intrusion or disclosure of information had caused significant trauma to the victim and a fine was not deemed an adequate sentence. When announcing the report, the Chairman of the Justice Committee, Sir Alan Beith, MP, said parliament ‘must’ enact the power already provided under the Criminal Justice and Immigration Act 2008 to hand out custodial penalties for serious misuses of personal information.10

The report also called on the government to look into extending the Information Commissioner's inspection powers to compel information audits and investigate potential data abuses, identifying the healthcare sector as a particular area of concern. At present the Information Commissioner's office only has the power to carry out compulsory data protection audits of central government departments.

Medical Ethics Today, 3rd edition: book launch and conference

On 22 February 2012 the British Medical Association (BMA) is holding a high-level conference to coincide with the launch of the third edition of Medical Ethics Today, the BMA's handbook of ethics and law. The event will focus on two key ethical issues within contemporary medical practice, the withdrawal of clinically assisted nutrition and hydration from patients in a MCS and the future of medical professionalism. Further details of the event can be found on the BMA website at www.bma.org.uk.