Mental Incapacity Bill Dr P J Howard  why this Bill is so dangerous

BACKGROUND

  I have been a Consultant Physician with an interest in Gastroenterology for over 10 years. I have a particular interest in swallowing disorders and feeding problems both as a medical academic and as a Consultant Physician. I work closely in conjunction with speech therapists and radiologists to provide a clinical service for those with swallowing problems.
 

  Swallowing difficulties in the immediate aftermath of strokes are not uncommon. The attendant risks of aspiration pneumonia in those patients who cannot swallow liquids is now known to be a significant cause of early mortality in these patients. Early swallowing assessments in stroke patients are now routine in general medical wards and stroke units. Fortunately such swallowing difficulties are transient and usually recover within the first few week after stroke. As a Gastroenterologist I am often asked to give advice regarding the management of such patients and to place gastroscopy feeding tubes (PEG tubes) in those with long-term feeding difficulties.
 

  In this statement I shall be concentrating mainly on the implications of the Mental Incapacity Bill for the provision of hydration and nutrition for those who lack capacity. Nevertheless, I will also mention the implications of advance refusals on other aspects of patient care, in particular the resuscitation of patients who have taken drug overdoses and written "suicide notes" refusing resuscitation. I shall also mention the dangers of lasting powers of attorney which would leave patients injured by wrong decisions unable to claim compensation or damages since the attorneys (or court appointed deputies) do not have any statutory duty of care in the Bill.
 

IS FEEDING TREATMENT OR CARE?

  Medical treatment is disease specific. The purpose of medical treatment is to prevent or treat disease and to alleviate pain and distress especially when cure is not possible. Palliative care is an established and respectable branch of medicine. Care refers to those things which are necessary in health and disease to sustain life. According to this definition the provision of hydration and nutrition, warmth, shelter, companionship, comfort and companionship would be care not treatment. Nutrition and hydration serve physiological function required to sustained life.
 

EFFECTS OF WITHDRAWAL OF HYDRATION

  Failure to provide nutrition and hydration will cause the death. Starvation will lead to death over weeks or months. The effects of dehydration will lead to death in a much shorter period, usually within 10-14 days. Death through dehydration, if the patient is not imminently dying, is a particularly unpleasant and distressing way to die. Few, if any, patients would deliberately choose suicide through dehydration. The immediate effects of dehydration in a conscious subject include the development of intense thirst and a strong or even irresistible desire to drink, headache, listlessness, apathy and confusion progressing to delirium. As dehydration progresses the tissues shrink as they loose water, the skin becomes dry and wrinkled, the eyes sunken. With further water loss, blood volume falls and cardiac output declines with a decrease in the blood supply to the skin with the risk of pressure sores. Fever develops, probably because of disturbances in the temperature regulation in the brain, or because of super added infection in the by now debilitated patient. Sweating ceases (which is one of the major means of heat loss) and body temperature may rise precipitously. If there is any doubt about how unpleasant and distressing death through dehydration is, one only has to go without fluids for 2-3 days, let alone 1-2 weeks. Few people in a Western climate have ever experienced real thirst, much less dehydration. It is only when patients no longer have access to water that they would experience dehydration in this country. Yet this is precisely what is anticipated in this Bill.
 

DEFINITION OF HYDRATION AND NUTRITION AS LIFE-SUSTAINING TREATMENT

  The Mental Incapacity Bill defines "life-sustaining treatment" as treatment "which in the view of a person providing health care for P is necessary to sustain life." (s 7(4)). Hydration and nutrition would therefore be medical treatment as they are "necessary to sustain life", Moreover, donees of lasting power of Attorney (and presumably court appointed deputies) will have the power to refuse consent "to the carrying out or continuation of life-sustaining treatment" if the power of attorney "contains express provision to that effect" (s 10(2)). Hence, it is clear that the Bill if enacted intends that patients may direct the cessation of hydration and nutrition and also grant powers of attorney to the same ends.
 

  I have yet to encounter a patient who wishes to die through dehydration and have never come across a deliberate suicide by dehydration.
 

BMA AND GMC GUIDANCE

  Mention has already been made by several representatives of the Making Decisons Alliance of the BMA Guidance on withdrawing and withholding hydration and nutrition. This guidance specifically deals with treatment withdrawal, including the withholding of "artificial" hydration and nutrition from those who are not dying.
 

  "2.1 the main focus of this guidance is decisions to withdraw or withhold life-prolonging treatment from patients who are likely to live for weeks, months, or possibly years, if treatment is provided but who, without treatment, will or may die earlier."
 

  Such treatment includes "artificial" nutrition and hydration but not the "offer of oral hydration and nutrition" (paragraph 3.3).
 

  Hence in the common situation of swallowing difficulties arising from stroke, (which is usually transient and recovers within six weeks), there might be a ban on drip or tube feeding but not of oral feeding. However, oral feeding of such patients would risk choking to death or aspiration pneumonia. How can it be ethically proper to acquiesce to a patient's refusal of tubes or drips while at the same time offering the patient oral food and drink which could kill him?
 

  The BMA recognizes (as it should) that the deliberate withdrawal of hydration will result in a patient's death but argues that it may still be withdrawn if the doctor feels that hydration is no longer "a benefit". This implies logically that life is no longer a benefit to the patient.
 

  "19.1  Although the health care team may foresee that withholding or withdrawing life-prolonging treatment will result in the patient's death, this is fundamentally different from action taken with the purpose or objective of ending the patient's life."
 

  I cannot think of any circumstances where I may ethically withdraw hydration from a non-dying patient, knowing that this intervention will cause the patient's death in 10-14 days. The logical inconsistency of acknowledging that "withholding or withdrawing life-prolonging treatment will result in the patient's death" on the one hand, whilst arguing that this is "different from action taken with the purpose or objective of ending the patient's life" is remarkable. In the case of Tony Bland, the acknowledged purpose of withdrawing hydration was to bring about his death. The problem was precisely that Tony Bland would not die, but could go on living for months or even years, unless his fluids were stopped.
 

  The BMA acknowledges that if doctors are to withhold hydration certain "safeguards" are required.
 

  "19.3  Decisions to withhold or withdraw artificial nutrition and hydration from patients whose imminent death is not inevitable and whose wishes are not known, require additional safeguards which are discussed in Part 3D".
 

  At 20.1 the BMA states that "it accepts that many people perceive there to be an important distinction between this and other treatments" and that . . . "decisions to withhold and withdraw artificial nutrition and hydration are taken only in the most extreme cases, where its provision would not provide a net benefit to the patient". However, later the BMA recognizes that the withdrawal of nutrition and hydration might be decided by general practitioners in the community for common conditions (such as stroke).
 

  "22.1 (a)  All proposals to withhold or withdraw artificial nutrition and hydration whether in hospital or in the community should be subject to formal clinical review by a senior clinician who has experience of the condition from which the patient is suffering who is not part of the treating team . . . for common conditions, the senior clinical could be a general practitioner, particularly where the patient is being treated in the community, such as in a nursing home."
 

  It is clear therefore that the BMA at least recognizes that the withdrawal of hydration and nutrition with the aim of causing death will be commonplace in hospitals and the community. In the preceding paragraph 22.1 it acknowledges again that "The withholding or withdrawing of artificial nutrition and hydration will inevitably result in the patient's death." There is a clear intention of the BMA to support decisions to withdraw hydration and nutrition from patients who are not in PVS without the sanction of the court.
 

  "21.1  The BMA can see no reason to differentiate between decisions for patients in PVS and those for patients with other serious conditions where artificial nutrition and hydration is not considered to be a benefit, which are currently governed by established practice without the need for legal review."
 

  It is perhaps not surprising that the BMA also recognizes a right of conscientious objection to those (such as myself) who would object to causing a patient to die of dehydration.
 

  "24.1  Where a member of the health care team has a conscientious objection to withholding or withdrawing life-prolonging treatment, he or she should, wherever possible, be permitted to hand over care of the patient to a colleague. This is a best practice which may also now be necessitated by the guarantee of freedom of conscience in Article 9 of the European Convention."
 

  It is also not surprising that the BMA recognizes the strain that such policies would place on staff and the need for "support".
 

  "26.1  Although not responsible for making the decision to withhold or withdraw treatment, those close to the patient are often left with feelings of guilt and anxiety in addition to their bereavement. It is important that the family are supported both before and after the decision has been made to withdraw or withhold life-prolonging treatment."
 

  "26.2  The emotional and psychological burden on staff involved in the withdrawing and withholding of life -prolonging treatment should be recognized and adequate support mechanisms need to be available and easily accessible before, during and after the decisions have been made."
 

  If the BMA recognizes such stresses amongst staff making these decisions, how much more stressful would it be for Attorneys or court appointed deputies if they were making these life and death decisions, as proposed by the Mental Incapacity Bill. The BMA recognizes that "Where the patient has died following a decision to withhold or withdraw life-prolonging treatment, however, the usual bereavement may be exacerbated by feelings of guilt or anxiety about whether the right decision was made and about the family's role in that decision".
 

GMC GUIDANCE ON WITHHOLDING AND WITHDRAWING TREATMENT

  The GMC Guidance is an improvement on that of the BMA but it still acknowledges that hydration and nutrition might be withdrawn from patients who are not dying in paragraphs 38 and 81.
 

  Paragraph 38:  Always consult a clinician with relevant experience . . . in cases where . . . you are considering withholding or withdrawing artificial nutrition or hydration from a patient who is not imminently dying, although in a very serious condition, and whose views cannot be determined (see paragraph 81 below).
 

  Para 81:  "Where death is not imminent, it usually will be appropriate to provide artificial nutrition or hydration. However, circumstances may arise where you judge that a patient's condition is so severe, and the prognosis so poor that providing artificial nutrition or hydration may cause suffering, or be too burdensome in relation to the possible benefits."
 

  In the July minutes of the GMC Council (which can be seen on the GMC website) it was acknowledged that there are issues relating to the legality and ethical standing of the GMC Guidance on Withholding and Withdrawing Treatment.
 

  "Our guidance was prepared with the assistance of the Official Solicitor and a professor of medical law. It was the product of lengthy and detailed consultation and careful consideration of statute and common law. No significant concerns about compatibility with ECHR were identified during the drafting or consultation process. We did not therefore seek Counsel's opinion on the guidance. However, the implications of the ECHR are developing as cases come to court as the result of the Human Rights Act 1998. In the light of these developments, and the opinion from Richard Gordon QC now in the House of Lords library, we are now considering whether to seek an opinion from leading Counsel, to provide further advice on the human rights implications and an authoritative opinion to which we may be able to refer if further public comments are made about the lawfulness of our guidance."
 

  In his advice Richard Gordon argues that—
 

  "The GMC Guidance envisages situations in which although a patient's death is not imminent life prolonging treatment my be withdrawn. There is no suggestion in the guidance that this may violate Articles 6, 2, 3 or 8 (see above). Further, even the existing domestic ECHR case-law does not go so far. The Guidance is, therefore, materially misleading".

 

  "I consider that the provision of hydration in such cases is likely to fall within the scope of the State's positive obligations under Article 2 ECHR. Failure even to advise clinicians of the important of compliance with the principles set out in existing case law and with the separate obligations under Articles 6, 3 and 8 ECHR renders, in my opinion, this Guidance—in this respect—unlawful".
 

  He recognises however, that even the GMC at least doubts the legality of its own advice—
 

  "Note, for example, paragraph 17.4 of that Guidance which is ostensibly in direct conflict with paragraphs 38 and 81 of the GMC Guidance providing (materially) as it does that:
 

  `Except where the patient's imminent death is inevitable, a decision to withhold or withdraw all treatment is likely to be inappropriate and potentially unlawful . . .'"
 

CONCLUSION

  The Mental Incapacity Bill would permit an extension of the House of Lords decision in Bland [1993] to patients who are not in PVS and to whom a duty of care remains. Such decisions would not be subject to judicial review but rather could be made by an attorney (or court appointed deputy). The state would be failing in its duty to positively safeguard life under Article 2 of the ECHR. Deliberate dehydration of a conscious patient so as to bring about death would also constitute inhuman and degrading treatment, and therefore be likely to offend Article 3. The abhorrent nature of such a practice would also offend the consciences of doctors and nurses (Article 9).
 

  My position is that the family and attorneys should never be either permitted or required by law to make such decisions and that doctors must never be criminalised for providing patients with hydration and nutrition, howsoever delivered. The proposed Bill would legally require doctors and nurses to withdraw hydration from patients, knowing that this will inevitably cause the death of the patient. Continuance of feeding without the agreement of the attorney would be regarded as assault or battery since the attorney (or deputy) would "stand in the shoes of the patient" and have executive decision-making rights which would be legally binding on the doctor.
 

ADVANCE DIRECTIVES

  There are real dangers in enshrining advance refusals of treatment in statute law. Patients views, wishes and decisions are not necessarily fixed but may vary over time. Consent to treatment is often a process rather than an event and patients may come to accept treatment which they had previously refused and vice versa. Difficult decisions, in particular, may require serious deliberation over time and patients may change their mind about treatment. Few surgeons would accept consent to major surgery made months or years in advance. Unless advance decisions are frequently reviewed, they cannot be guaranteed to represent the contemporaneous wishes of patients. An example of this is the refusal of blood transfusions by Jehovah's Witnesses which must be reaffirmed annually. Few advance refusals of treatment are as vigorous as this. The Bill would allow not only written, but also oral, advance refusals even if expressed in "broad terms or non-scientific language".
 

  Particular anxieties for doctors and nurses would arise in the case of suicidally motivated advance refusals or where the refusal was for basic medical and nursing care or the provision of hydration and nutrition, however administered.
 

  Would the refusal of resuscitation in a suicide note constitute a valid and applicable advance directive? Would it become illegal to stem the hemorrhage of someone who had slashed their wrists?
 

  Drug overdose is one of the most common medical emergencies. However, the Bill would prevent doctors from treating such patients if they had expressed a wish not to be resuscitated either in writing or orally. The criteria for validity are negative (s 24 (1) namely that P has expressed an advance decision which has not been withdrawn, is not contravened by a lasting power of attorney created subsequently and P has not acted in a way that is inconsistent with the advance decision. The three criteria for applicability (again expressed negatively) would clearly apply since the treatment is specifically indicated, the anticipated circumstances have arisen and are as foreseen in the suicide note.
 

  However, we know as clinicians that the overwhelming majority of those who take overdoses do not have a suicidal intention and are pleased to be alive the next day. The term "parasuicide" is used for such cases. Nevertheless, this can only be known with certainty retrospectively after the patient has been successfully resuscitated. The case of suicide notes in cases of deliberate self harm or drug overdose, illustrate the difficulties of enshrining advance refusals of treatment in statute law. The current state of the common law regarding advance statements was carefully and sensibly set out by Mr Justice Hughes in the case of Re AK in which he pointed out that it was important to "ensure that such anticipatory declarations of wishes still represent the wishes of the patient. Care must be taken to investigate how long ago the expression of wishes was made. Care must be taken to investigate with what knowledge the expression of wishes was made. All the circumstances in which the expression of wishes was given will of course have to be investigated." Re AK (High Court of Justice, Family Division: Hughes J (2000) 58 B.M.L.R. 151; [2001] 1 FLR 129). It is my view that the law regarding advance statements should continue to evolve through common law rather than be enshrined in statute.
 

  Further difficulties would arise for doctors and nurses in the case of patients using Advance Refusals of treatment to bring about "passive" euthanasia through the withdrawal of life-sustaining treatment such as insulin or through the withholding or withdrawing of hydration and nutrition.
 

LASTING POWERS OF ATTORNEY

  Anyone making medical treatment decisions must be responsible for the consequences of those decisions. Doctors and nurses can be held to account through clinical negligence. A patient may suffer the consequences of a wrong decision himself. However, the Bill does not impose a duty of care on the attorney (or court appointed deputies). There is therefore no redress or compensation for a wrong medical decision made by a proxy. The only sanction is in cases of ill-treatment or willful neglect punishable by imprisonment for not more that two years or a fine. Ill-treatment or willful neglect are too high a threshold. Unlike the Adults with Incapacity (Scotland) Act 2000, which provides a second medical opinion procedure to tackle disputes between doctors and proxies before recourse to the Court of Session, there is no such provisions in the Bill. Disputes will inevitably arise between healthcare professionals and proxy decision makers who refuse the recommended treatment. Particular difficulties will arise when basic care, palliation or the provision of hydration and nutrition is refused. An attorney might also refuse resuscitation in the case of drug overdoses or deliberate self-harm.
 

  Whilst carers and relatives ought to be involved in decision-making and should be consulted, executive powers for medical decision making ought to remain with doctors who remain accountable and liable for wrong diagnosis, advice and treatment. Without indemnity for negligence, any patient who is harmed through malpractice cannot receive compensation.
 

"BEST INTERESTS"

  The definition of "best interests" in the Bill does not specifically mention "clinical" best interests which was the basis of the judgment in Re F 1989. According to the common law principle of necessity, treatment can be given on the basis of necessity in order to preserve life, prevent a deterioration in health and to alleviate suffering. Patients will take into account, not only clinical opinions regarding their condition, but also other non-clinical factors eg subjective, financial and religious considerations in making decisions regarding treatment. Doctors are competent to make decisions regarding a patient's medical condition and the risks, benefits and alternatives of any proposed treatment. They are not professionally qualified to take into account these other factors in determining what is "best" for a patient. Nevertheless in the case of incapacitated persons it is good practice to take into account these additional aspects in so far as they can be ascertained.
 

SUMMARY

  The Mental Incapacity Bill, as currently drafted, would enable attorneys, or court appointed managers, to refuse medical treatment, including palliative care and even the provision of nutrition and hydration, howsoever administered. Article 2 of the European Convention on Human Rights states that no-one shall be deprived of life intentionally. It must remain unlawful to bring about the death of a patient through neglect of basic care and in particular throughout the withholding or withdrawing of food or fluids. No patient should ever die, or be caused to die, through dehydration.
 

  The proposed legal basis of decision-making is that it should be in accord with the patient's "best interests" that it should be made on the basis of "best interests" however, "best interests" does not include "clinical" best interests. Deciding treatment for the incapacitated, doctors should consider first the clinical needs of the patient and then also the would-be wishes of the patient in so far as these can be ascertained by relatives and carers. The responsibility for the ultimate decision should rest with the doctor, who may nevertheless be held to account for failing to take into proper account the wishes of the patient, family and carers who are also responsible for the patient's well-being.
 

RECOMMENDATIONS

  1.  Advance Directives should be taken into account in deciding the treatment for the incapacitated. Nevertheless they should not be legally binding on doctors who should retain responsibility (and liability) for the decisions they make.
 

  2.  Attorneys should not be given the legal powers to determine treatment. This again should remain with doctors who remain responsible and accountable for the care given to the patient according to their well established duty of care. If attorneys were to have the final say in treatment, they should have a statutory duty of care, be accountable for "negligent" decisions and liable for damages if the patient is harmed.
 

October 2003

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