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1. Does E have the capacity to refuse life-sustaining treatment, including feeding? 

2. Were E attempts to make binding advance directives refusing treatment valid?


3. What are the ethical factors, legal principles, and critical thinking framework(s) to consider in balancing the value of E’s life against the value of her personal independence? 

The Capacity of Mental Health Patients

Anorexia is the ideal ‘hard case’ in health care law; this is because most patients are young otherwise healthy people who, plagued by the disorder are committed to a terrifyingly destructive path. More often than not, they refuse treatment despite being well aware of the consequences that might eventually lead to death (Callaghan & Ryan, 2013, p. 2).  The challenge with anorexia and other similar mental disorders is that courts, health care practitioners have to strike a balance between recognising and respecting the right of autonomy for patients and the preservation of life as this illness poses a suicide risk. Anorexia patients, as well as other patients who might need life-sustaining treatment depending on their medical condition, have the option of filling advance care directives. An Advance Care Directive is an instrument that outlines a patient’s stipulations for future treatment depending on the medical condition in question (Prof. Colleen, 2013, p. 2). Patients above eighteen years with the capacity to comprehend the implications of their decisions can fill and sign advance care directives; in these, they can elect not to be resuscitated or subjected to any other life-sustaining treatment. The following discourse aims to analyse E’s case and identify the capacity required for a patient to refuse life-sustaining treatment, the validity of advanced health care directives and the ethical factors that practitioners should consider in similar situations. In identifying capacity, the analysis will look into the various tests courts consider in determining a patient’s soundness of mind and other influencing factors.

In any legal contract or transaction, parties involve must have capacity in order for the document or agreement to be valid and binding (Latimer, 2012, p. 367).  Minors, mentally ill patients, intoxicated persons and corporations are usually subject to certain limitations in their legal capacity to contract; this is because forming a legally binding agreement requires that parties are well aware of the implications and obligations arising. As such, capacity is the ability to comprehend the nature, objective and implication of a decision (Townsend & Luck, 2015, p. 92). In medical care, the basic rule is that practitioners must seek consent from the patient prior to undertaking any treatment (Herring, 2014, p. 149). This is an embodiment of the autonomy principle which is key in medical law. To give consent, a patient or their recognised guardian must have the capacity to give this consent. Capacity, in this case, is usually determined on grounds of age and understanding as outlined by John Stuart Mill (Donnelly, 2010, p. 91). The Gillick test is used to identify capacity in cases where age is an issue (Gillick v West Norfolk & Wisbeck Area Health Authority, 1986). Different tests, however, depending on the condition in question are used to identify capacity in terms of soundness of mind.

Legal capacity in anorexia cases is determined by weight and BMI as these are believed to affect the functioning of the brain. Mental capacity assessments usually consider the ability of the patient to; express their opinion on the choice of treatment, comprehend information corresponding with the decision, understand the implication of the treatment to their situation and reason by logically weighing the various treatment options available (Elzakkers, Danner, Hoek, & van Elburg, 2016, p. 147).  These assessments usually focus on cognitive abilities raising debate as to whether they can consider the values and emotions that also play a part in decision making (Hindmarch, Hotopf, & Owen, 2013, p. 54). It is because of this debate that many scholars believe the test inadequate for anorexia patients, however as it stands these are the tests considered in determining mental capacity.

The Validity of Advance Care Directives

The Mac-Arthur Competence Assessment Tool-Treatment (Mac-CAT-T) is used to determine mental capacity by examining the underlying abilities previously mentioned (Elzakkers, Danner, Hoek, & van Elburg, 2016, p. 148). This test has been credited to capture comprehensively the current concept of competence and is the acclaimed assessment standard in psychiatric testing (Tan, Hope, Stewart, & Fitzpatrick, 2006, p. 268). In most Mac-CAT-T analyses, patients with low BMI, devalued appreciation for treatment or health, previous anorexia treatment and low social functioning have been found to have diminished mental capacity. Therefore, in evaluation mental capacity, it is important to consider BMI, the value for treatment and an appreciation of the illness, treatment history and possible stubbornness in thinking (Elzakkers, Danner, Hoek, & van Elburg, 2016, p. 147).

In Ms X (2014) the Court of Protection was faced with the decision to determine the mental capacity of a young anorexic woman to refuse treatment. Ms X had suffered from severe anorexia for well over a decade coupled with alcoholism all believed to emanate from previous distressing childhood events. Her severe condition had led to hospitalisation on various occasions for organ failure; at some point leading to a coma. Additionally, she had been treated as an inpatient anorexia patient on various occasions even undergoing force-feeding treatments. However, her destructive social cycle saw her binge drink upon discharge in an effort to dull her frustrations. Usually, the purpose of force- feeding patients is to sustain their life as other treatment is offered (Clough, 2016, p. 437); Ms X, however, did not respond well to any of these treatments.

The Court of Protection, when presented with these facts, held that Ms X lacked the capacity to decide on her treatment; it, however, held that force-feeding would not be in her best interests (A NHS Foundation Trust v Ms X, 2014). In this case, the court relied on the values of life and treatment and her ability to reason and weigh the available treatment options in order to determine capacity; Ms X’s inability to weigh relevant information disqualified her capacity to consent or refuse treatment. A similar opinion was held in Re E (2012) where Jackson J was convinced that E lacked capacity as she could not weigh the benefits and disadvantages of eating well and that her need not to gain weight overpowered all other thoughts (Re E (Medical treatment: Anorexia) , 2012). Additionally, her BMI was low; it read at 11 when the BMI required for an adequately functioning brain is 17 (Saul, 2012). 

With the above considerations in mind, it is clear that E does not have the mental capacity to consent to treatment or refuse it. Despite having been described as intelligent and articulate, her illness at the moment is too severe; having been admitted and placed on ‘end of life’ care indicates that her physical state is dire. Additionally, the fact that she is on opiate medication, to which she has developed an addiction will call to question any of the decisions she makes. Going by BMI and ability tests, E is most likely incapable of weighing the consequences of her medical options and making an informed logical decision thereafter.

As previously mentioned, advance health care directives are documents that allow adult patients to set out instructions for their future treatment (Slater & Gordon, 2017). These documents are usually prepared when a patient has capacity; they come in handy where the patient loses said capacity due to an underlying medical condition. In New South Wales, advance care directives are legally enforceable despite there being no specific legislation governing them; if found to be valid, they must be respected (NSW Government, 2017). According to the Guardianship Act 1987 (NSW), a person who lacks mental capacity can refuse treatment in advance, this implied provision gives legal backing to the use of Advance Care Directives. Additionally, the New South Wales Health Department has issued guidelines on the best practice applicable by medical practitioners with regard to Advance Care Directives. The 2004 guidelines outline certain principles to consider in ensuring the validity of a directive which are also embodied in common law principles (Roth, 2014, p. 4).

Common law dictates that, for an advanced health care directive to be valid it must be specific, voluntarily drafted and the person drafting it must have the capacity (Slater & Gordon Lawyers, 2017). On capacity; at the time of making the directive, the patient must have capacity in terms of age and soundness of mind. The directive must also be made free of coercion and must be specific on the refusal of treatment. In Local Health Authority v E (2012), the Court of Protection held that a woman suffering from anorexia was incompetent to make health care directives that she had signed previously. The court believed there were reasons to doubt her capacity to sign and refuse treatment based on her actions.

The 2004 NSW Department Guidelines also embody these principles; they require that the validity of a directive be tested against the principles of specificity, currency, competence and witnessing (Roth, 2014, p. 4). Currency dictates that an advance care directive is prepared to reflect a patient's current intentions; this encourages people to review their directives as long as they have the capacity. However, as long as the patient had the capacity and advance care directive will remain binding. Additionally, witnessing of advance care directives provides proof of their capacity at the time; it also serves as protection against fraud. A recent Supreme Court of New South Wales decision outlines these principles. In Hunter and New England Area Health Service v A (2009), the court found an advance care directive refusing kidney dialysis for an adult patient as valid. This was based on grounds of age as well as mental capacity to consent. Justice McDougall in the case held that the hospital was bound to adhere to the patient’s wishes as he had a right to autonomy and failure to observe the directive would serve as battery under law (Flannigan & Hunwick, 2010).

Once an advanced care directive has been identified as valid, then the medical team attending to the patient is tasked with informing the family on the implications of the directive; that is what they should expect. Additionally, they should avail sufficient time to process this information as they endeavour to follow the instructions provided in the directive. Where any doubts arise in the process then the team is advised to seek medical advice; this is because failure to adhere to an advance care directive that has been verified as valid can expose medical practitioners to litigation risks on grounds of breach of duty and infringement of the right to autonomy (NSW Government, 2017).

The court can invalidate an advance care directive where it finds that the document did not meet the aforementioned threshold. A doctor cannot treat a patient without consent (Elliston, 2007, p. 47), where the patient lacks capacity to give consent and the decision is made for them then the treatment administered should be guided by the best interests’ principle (Dawson, 2012). The best interest of the patient is determined by striking a balance between the harms and benefits of the treatment to the patient; after all, a doctor has the duty to ensure they do good and not harm their patients (Dickenson, Huxtable, & Parker, 2010, p. 196). This is the manifestation of the Hippocratic Oath through the principles of Non-Maleficence and Beneficence. It is expected of every medical caregiver to favour their patient’s well-being and do right by them (Kinsinger, 2010, p. 45).

In Re L (2012) EWHC 2741 (COP), the court was faced with deciding on force-feeding treatment for a young woman who had long suffered from anorexia nervosa and had spent most of the past decade undergoing inpatient treatment for the same. At this time she had lost a great deal of weight and the outcome of her ailment was bleak. The medical assessment highlighted that she lacked the competent capacity to give consent or refuse it with regard to her treatment. The issue before the court was whether it would be in her best interests to administer force-feeding. Her family, as well as medical experts, believed her condition was too fragile and force feeding would most likely cause death. The court held that withholding this treatment was lawful as it would do more harm than good when administered (Coggon, 2014). 

In consideration of the discourse above, the court is likely to find the advance directives by E invalid. This is subject to her lack of capacity; her severe anorexia, alcoholism and depression pose a challenge to her mental state. If there are no medical assessments to prove or disprove her capacity the court is likely to doubt it based on her actions and values. If found invalid, the medical team can assess the validity of force feeding as a treatment guided by the best interests principle applied in the aforementioned cases. If it is believed that force-feeding would be in E’s best interests and also that the benefits of the treatment out way the harm caused then the team can proceed with the treatment.

There are four major principles guiding medical practice; non-maleficence, justice, autonomy and beneficence (Stanford University). These principles guide medical practice and establish the framework for biomedical ethics (Beauchamp & Childress, 2013, p. 12).

The medical profession is built on the principle of autonomy; this is the ability to self-determine without limitation or interference regardless of awareness on possible consequences (Carr, 2013, p. 105). Autonomy grants an individual the right to enjoy acting on their own accord while having this freedom curtailed is considered as diminished autonomy. Patient autonomy is key in medical ethics, the patient has the right determine what is to be done to their body and failure to adhere to their decision constitutes battery. However, cases do arise where this autonomy is limited by capacity either due to age or mental capacity that curtails understanding of the consequences arising. Where such a situation arises, the patients best interest are to be considered, guided by the balance of harm and benefits from the treatment to be administered.

Non-maleficence, on the other hand, is the duty of a medical practitioner not to intentionally inflict harm on a patient. Treatment, usually, in one way causes some degree of harm to patients; some types of treatments more than others. Guided by this principle, it is the duty of the practitioner to consider treatment that causes the least amount of harm with the most amount of benefit to the patient. The benefits should out way the harm for the treatment to be justifiable; the practitioner should also not impose the risk of harm during treatment (Dr. Henderson, 2015). As such this right goes hand in hand with the harm and benefits principle.

Another ethical principle to consider is beneficence which in essence is the obligation to behave in a way that promotes the good of others; in this case patients (Dickenson, Huxtable, & Parker, 2010, p. 196). In principle, this is the moral duty to act in the benefit of a patient, to assist them to achieve the best possible care and health. The avoidance of harm and pursuit of good is also embodied in the Hippocratic Oath and is seen as a positive principle with non-maleficence being the negative principle. However, challenges arise where this duty collides with the patient’s right to autonomy and independence with regards to treatment.

Justice is the last principle to consider, as a principle, it dictates that equity and equality be adopted in medical practice. The challenge is that there is no criterion to determine equality or inequality between parties; practitioners are expected to provide fair treatment to all patients to the best of their ability (Carr, 2013, p. 108). As such, in the medical profession, there should be fair distribution of resources; practitioners should also endeavour to respect patient’s rights and most importantly respect the law (Dr. Nisselle, 2013). 

The above-mentioned ethical factors and principles provide the guidelines for determining how to balance E’s right to autonomy as well as the duty to sustain life and ensure she has the best care. In order to determine how to proceed with E’s treatment, the medical team should first and foremost identify what is in the best interest of E as a patient. This can be determined by court as highlighted in the cases previously mentioned. If the court upholds the directives then it would be in E’s best interest to adhere to the directives. However, if the directives are invalidated and treatment is found to be in her best interests; the mode of treatment adopted will have to be considered. Force-feeding has been mentioned to have possible success; however, E has expressed her dislike for it. The challenge is in balancing the harm caused by the treatment versus the eventual benefit to E. This harm’s and benefits principle; which is an embodiment of the four tenets of good medical practice, will establish the framework to guide the practitioners on how to proceed with E’s treatment.

Conclusion

In conclusion, the outcome of the Department of Health’s application is likely to invalidate the directives previously signed by E. Additionally, the court will also find E lacking capacity to consent to or refuse treatment citing her inability to appreciate the value of treatment and the severity of her illness. As such, this means that E can undergo treatment, the challenge now is whether force-feeding is a suitable treatment method for E’s current condition. The study has outlined various principles that guide medical practitioners in determining the validity of treatment. The medical team should consider their obligations according to the principles of autonomy, justice, beneficence and non-maleficence. From these principles the concepts of harm and benefits and best interest arise; in administering treatment, the team should ensure the treatment is in E’s best interest and provides more benefits than harm to her. If force-feeding fits these qualifications then it would be valid; although it is notable that many scholars and practitioners alike believe this treatment curtails freedom of choice and autonomy.

Reference list

A NHS Foundation Trust v Ms X, EWCOP 25 (Court of Protection October 8, 2014).

Beauchamp, T. L., & Childress, J. F. (2013). Principles of Biomedical Ethics (7th ed.). Oxford: OUP.

Callaghan, S., & Ryan, C. J. (2013). Treatment Refusal in Anorexia Nervosa: The Hardest of Cases. Springer Science and Business Media, 1-3.

Carr, C. (2013). Course notes Medical law and ethics. Oxon: Routledge.

Clough, B. (2016). Anorexia, Capacity and Best Interests: Developments in the Court of Protection Since the Mental Capacity Act 2005. Medical Law Review, 434-445.

Coggon, J. (2014). Anorexia Nervosa, Best Interests and the Patients Human Right to a 'Wholesale Overwhelming of her Autonomy'. Medical Law Review, 119-30.

Dawson, A. (2012). Public Health Ethics. Cambridge: CUP.

Dickenson, D., Huxtable, R., & Parker, M. (2010). The Cambridge Medical Ethics Workbook (2nd ed.). Cambridge: CUP.

Donnelly, M. (2010). Healthcare decision-making and the law: Autonomy, capacity and the limits of liberalism. Cambridge: CUP.

Dr Henderson, R. (2015). Medical Ethics. Retrieved March 24, 2017, from https://patient.info/doctor/medical-ethics

Dr Nisselle, P. (2013). Essential learning: Law and ethics. Retrieved March 25, 2017, from https://www.medicalprotection.org/uk/casebook-and-resources/new-doctor/vol-6-no-1-2013/essential-learning-law-and-ethics

Elliston, S. (2007). Best Interests of the Child in Healthcare. London: Routledge-Cavendish.

Elzakkers, I. F., Danner, U. N., Hoek, H. W., & van Elburg, A. A. (2016). Mental Capacity to consent to treatment in anorexia nervosa: explorative study. BJPsych Open, 147-153.

Flannigan, A. C., & Hunwick, A. (2010, April 6). Advance Care Directives- Hunter and New England Health Service v A [2009] NSWSC 761. Retrieved from Mondaq: https://www.mondaq.com/australia/x/97538/Healthcare/Advance+Care+Directives+Hunter+and+New+England+Health+Service+v+A+2009+NSWSC+761

Gillick v West Norfolk & Wisbeck Area Health Authority (1986).

Herring, J. (2014). Medical Law and Ethics. Oxford: OUP.

Hindmarch, T., Hotopf, M., & Owen, G. (2013). Depression and decision-making capacity for treatment or research: a systematic review. BMC Med Ethics, 54.

Kinsinger, F. S. (2010). Beneficence and the professional's moral imperative. Journal of Chiropractic Humanities, 16(1), 44-46.

Latimer, P. (2012). Australian Business Law. Sydney: CCH Australia Ltd.

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Prof. Colleen, C. (2013). Advanced Health Care Directive. NSW: Southern Cross University.

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Roth, L. (2014, May). Advance care directives. NSW Parliamentary Research Service, pp. 1-13.

Saul, P. (2012, July 3). Force-feeding anorexic patients curbs freedom of choice. Retrieved from The Conversation: https://theconversation.com/force-feeding-anorexic-patient-curbs-freedom-of-choice-7815

Slater & Gordon. (2017). Advance Care Directives. Retrieved from Slater & Gordon Lawyers: Health and Law: https://www.healthpractitioners.com.au/advance-health-directives/

Slater & Gordon Lawyers. (2017). New South Wales-Common Law Advance Health Directive. Retrieved from Slater & Gordon Lawyers: Health and Law: https://www.healthpractitioners.com.au/advance-health-directives/new-south-wales-common-law-advance-health-directive/

Stanford University. (n.d.). What are the basic principles of medical ethics? Retrieved March 24, 2017, from https://web.stanford.edu/class/siw198q/websites/reprotech/New%20Ways%20of%20Making%20Babies/EthicVoc.htm

Tan, J. O., Hope, T., Stewart, A., & Fitzpatrick, R. (2006). Competence to make treatment decisions in anorexia nervosa: thinking processes and values. Philos Psychiatr Psychol, 267-282.

Townsend, R., & Luck, M. (2015). Applied Paramedic Law and Ethics: Australia and New Zealand. Chatswood: Elsevier.

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