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The right to die with dignity: legal and ethical rules

This essay aims to consider the ethical and legal issues surrounding the case of Hannah Jones, the 13 year old who refused a potentially life saving heart transplant in order to die ‘with dignity’. Hannah Jones along with her parents argued that she had been through “too much trauma” since she had been diagnosed with a rare form of leukaemia when she was 5. The Herefordshire hospital where she was a patient started high court proceedings against her family and tried to remove Hannah temporarily from her parent’s custody to allow for the heart transplant. Hannah put her case to a child protection officer who in turn conveyed her plea to barristers in the high court where the case was eventually thrown out because it was decided that Hannah was mature and competent enough to make this decision on her own. This case highlights the tension that exists between the patient and health authorities when it comes to end of life treatment.

There are two fundamental questions at the heart of this case that this essay will debate. Firstly, as adults, we have the right to decide upon and ultimately reject potentially life saving treatment if we feel it isn’t in our best interest. The law assumes that children and young people are limited in their capacity to make such decisions because they are unable to fully understand and consider the consequences of their actions. The notion of ‘best interest’ assumes that the law has the final say. The first question therefore has to be, when is a person under the age of majority entitled to make such serious decisions about their healthcare. This essay will then turn to consider the second major issue surrounding this case. Who has the ultimate right to decide upon what constitutes the ‘best interest’ of the patient? This doesn’t have to be age related because if the individual is considered competent then surely they should be allowed to make their own decisions.

In order to provide a proper debate around these two fundamental questions, this essay will firstly look rather broadly at the age of majority in relation to healthcare. It would be useful to look at other similar cases where the wishes of the child have clashed with those of the health authorities and what have been the outcomes. The essay will then consider the notion of ‘best interest’ and look at when it is acceptable for a child or young adult to decide on their health care treatment.

The Family Law Reform Act of 1969 argues that the consent to medical treatment of a child of 16 or 17 is as valid as that of an adult (section 9). The act has no application for the refusal of treatment. A precedent exists for those children under 16 (Gillick v West Norfolk and Wisbech AHA [1986] AC 112). This states that a minor has to be judged to be ‘Gillick competent’ before they can consent to treatment. This means that they must have sufficient intelligence and understanding to enable him/her to understand the treatment and implications of that treatment. Therefore, age of majority doesn’t seem to mater so much when it comes to consenting to treatment. However, the refusal of treatment is very different. This is guided by the 1999 Mental Health Act Code of Practice. Since the act is not age specific, those under the age of consent fall under it. Under this code, refusal can be overridden by the parents or the proper authorities. In the case of Hannah Jones, the parents were in agreement with her decision to refuse treatment. The hospital authorities in this case sought to take out a court order and overrule the parents because they felt that the refusal of treatment was likely to result in the death or permanent disability of the child.

It would be useful to consider a couple of cases where the refusal of treatment have gone the way the law intended. The first case worth considering is that of Re: M. M was a 15 year old female who suffered heart failure and required a heart transplant. She initially refused treatment for similar reasons to Hannah Jones. She didn’t want to endure a lifetime of painful treatment for a procedure that might not work anyway. She eventually consented to the treatment but even if she hadn’t and the procedure went ahead without her consent, it would have been lawful. The second case worth considering is that of a 15 year old Jehovah’s Witness who refused a blood transfusion with the backing of his parents. In this case, the courts overruled and he was forced to take have the transfusions. He stopped them when he reached 18.

Harbour et al. (2000) argue that using the Mental Health Act creates inconsistencies between law and good clinical practices. They argue that the code guiding the law is out of date. They point to the findings of an expert committee in this area that and state that, “there should be a threshold of 16 years for the presumption of capacity to make treatment decisions ie to both accept and refuse treatment and in the case of children from 10-16 years old there be a rebuttable presumption of capacity” (p. 196). They argue that the use of the Mental Health Act bypasses the patient’s authority. De Cruz (2001) argues along a similar line when he states that although there has been a growing recognition of children’s rights in healthcare, “a series of cases in the late 1980s and the 1990s revealed that there is also a strong element of judicial paternalism when it comes to children who refuse treatment in life threatening situations” (p. 640). Paul (2000) doesn‘t see this as a problem. He argues that the wishes of the patient should always be respected, until it is no longer practicable and then the Mental Health Act should be invoked.

The law allows for very little leeway for clinical practitioners such as nurses. A nurse has to uphold the law even if they feel that the child is making a competent decision about their health care options. However, as McHale and Tingle (2001) point out it is generally, “not clinically beneficial to treat a child where he or she is objecting, particularly where this involves detention against a child’s will” (p. 118). This highlights the tension that exists between the patients wishes and the law.

It would now be useful to look at the notion of ‘best interest’. In the previous two cases outlined, the judgement has always been that it is in the child’s best interest to have the treatment even though they may have argued otherwise. Elliston (2007) states that, “the central principle endorse in UK law is that when courts make decisions about children, the welfare of the child is paramount, or the decision must be in accordance with the best interest of the child” (p. 11). However, this whole area is fraught with difficulty. Elliston (2007) argues that medicine is an area where it is notoriously hard to establish facts with any degree of certainty. She goes on to argue that although great advances have been made in medicine, medical interventions are not risk free. In the case of Hannah Jones, there could have been a significant chance of failure during and post transplant. Some have argued that this lack of certainty is actually a huge strength of the principle of best interest when it comes to healthcare. It allows courts to consider each case on a case by case basis (Douglas, 2004: 173). Instead of a rigid ruling that has to be followed, courts can really consider the specific aspects of each case. Herring (2005) argues that this flexibility is actually a weakness of the system. He states that too much weight is given to medical opinion in these cases. He states that, “rather than the judiciary too often relying on their own views, a more valid criticism is that there is too much weight attached to supposedly ‘expert’ objective evidence and not enough judicial assessment of it” (p. 162). What medical experts consider to be in the best interest of the child might in fact be a dangerous course of action that may severely impact on their quality of life.

The case of Hannah Jones is somewhat of a landmark case. It doesn’t necessarily set a precedent because as already highlighted, the notion of best interest is considered on a case by case basis. However, for the first time it recognises that other factors other than simply medical factors have to be taken into account when deciding what is in the best interest of the child and their refusal of treatment. This ruling recognises that although the heart transplant could have been life saving, there were sufficient risks not to let it go ahead.

This essay would argue that there needs to be a complete rethink in the way the Mental Health Act is applied when those under the age of consent are refusing treatment. If children are allowed to consent to treatment that could potentially be dangerous and harmful to them, shouldn’t they also be allowed to refuse treatment that they feel may severely impact on their quality of life. Hannah Jones argued that by going ahead with the treatment, her life would change for the worse and there was a risk that she would die anyway. There is plenty of academic research that has shown that shared decision making and patient participation is often produces the best healthcare outcomes. If the patient is unhappy with the treatment option that their doctors had decided upon then it is less likely that they will respond to that treatment. In this case, this essay would argue that the ruling was correct. No one understood the way Hannah was feeling better that Hannah herself. She had been in and out of hospitals for 9 years of her life and even the doctors treating her had recognised that her and her parents had made a choice that was in the best interest of Hannah. It was the health authorities that pursued the case but ultimately Hannah showed that she had made a mature decision and that convinced the courts to make such a landmark ruling.

Two questions were posed at the start of this essay. When is a person under the age of consent entitled to make serious decisions about their healthcare and who has the ultimate right to decide what constitutes the best interest of the patient.

This case has shown that the courts are being more flexible and less paternalistic in how they view these cases. It shows that they are starting to consider the welfare of the patient and more importantly, recognising that children under the age of 18 are capable of making competent decisions about their healthcare. This essay would argue that the age of majority is still fundamental and shouldn’t be completely disregarded. It is good that we have legislation that protects children and more often than not it does serve to uphold the best interests of the child. However, there are cases where the law and health authorities need to take a wider view and realise that sometimes the child, especially one who has been through great suffering their whole life, is competent enough to make serious decisions. The ultimate right to decide what constitutes best interest should still rest with the courts but there needs to be a slight rethink into how this is applied. Less weight should be given to medical evidence and more considerations should be given into how the proposed treatment may impact on the long term quality of life and welfare of the young patient.

Bibliography and References

De Cruz, P. 2001, Comparative Healthcare Law, Routledge Cavendish, London.

Douglas, G. 2004, An Introduction to Family Law, Oxford University Press, Oxford.

Elliston, S. 2007, The Best Interests of the Child in Healthcare, Routledge, London.

Harbour et al. 2000, Children’s Consent to Medical Treatment, Psychiatric Bulletin, 24(5), 196.

Herring, J. 2005, Medical Law and Ethics, Oxford University Press, Oxford.

Lewis, P. 2008, Teenager insists on her right to die with dignity, The Guardian, 11 November.

McHale, V. and Tingle, J. 2001, Law and Nursing, Elsevier Health Sciences, London.

McLean, S. 2008, Hannah’s Choice, The Guardian, 11 November.

Re M [1999] 2 FLR 1097

Percival, J. and Lewis, P. 2008, Teenager who won the right to die: ‘I have had too much trauma’, The Guardian, 11 November.

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