With the increased emphasis placed on ‘patient-centred’ care, more patients are demanding to make independent judgement about their fate when it comes to receiving or withdrawing treatment support.1 In keeping with this trend, the ambiguity of the law surrounding euthanasia and ethical principles have made healthcare decisions even more difficult for health professionals; and there are no “right” or “wrong” answers as the society remains divided on whether to prolong or end the suffering,2,3as in the case described below, in which a quadriplegic patient who wished to commit suicide by refusing nutrition.
Rebecca is a 25-year-old quadriplegic female with a complete spinal cord lesion at C4, after being involved in a major motor vehicle accident. After the accident, she had undergone rehabilitation and attempted to live life as a quadriplegic individual. However, approximately 1.5 years after the accident, Rebecca appeared to have lost hope and seemed unhappy, and 3 months later, had communicated her wish to die by refusing nutrition, because she did not want to live life in her current state. She had also requested for her GP to not force feed her with a naso-gastric tube, in order to save her life.
Cases of refusing nutrition in order to die have been documented in literature,4-6 and court rulings have mostly ruled in favour of quadriplegic individuals seeking death,1,7-9 as with the case of Christian Rossiter who won a landmark right to die in 2009.7 Similarly, Larry McAfee was also a quadriplegic, except that he was respirator-dependent and had developed a mouth-controlled mechanism to turn off his own life-supporting respirator.8 Larry, too, won the court’s favour to seek an earlier death.8 In view of these rulings that appear to uphold patients’ right to refuse treatment, more people might be encouraged to fight for their right to live or die. This paper will therefore discuss the ethical dilemma pertaining to passive euthanasia (refusing nutrition) within the framework of deontology and utilitarianism, and principle-based ethics—respect for autonomy, beneficence, non-maleficence and justice.10 The main treatment and management options for Rebecca’s case will also be evaluated. Lastly, this essay will illustrate that in order to act in Rebecca’s best interest and to respect her right to autonomy, her wish for non-intervention should be respected.
Traditionally, the two major schools of ethical reasoning guiding decision-making in medicine are consequentialism and deontological.11,12 Utilitarianism is a version of consequentialism and is outcome-based; whether an action is right or wrong depends on whether its results give the best possible outcome.11 On the contrary, the deontological approach is based on fixed moral values, in that it embodies the notion that an act is inherently right or wrong without considering the outcome or consequences.11,12As argued by Goodhall, strictly adhering to either one of these two main ethical theories would be seriously flawed, as neither are entirely appropriate, nor executable in the healthcare setting.13 To elaborate this further, refusing nutrition shortens the lifespan of an individual, and from a deontological viewpoint, it is equivalent to killing, which violates the principle of ‘respect for human life’. Consequently, if Rebecca’s situation is analysed solely from a deontological perspective, her wish for non-intervention would not be respected. Fundamentally, utilitarianism presents with several weaknesses which limits its practical application in real life.12 One such weakness worth noting is that there may be limitations in our ability to predict future outcomes.12 This was exemplified in a 5 year follow-up case on a 22-year-old girl who became quadriplegic following a car accident, and had made considerable progress in her condition, from requiring feeding via a gastrostomy tube to no longer needing the tube, despite being deemed unlikely to make any further recovery 1.5 years after the accident.14 Bringing the discussion back to Rebecca, there is a chance that her condition might improve significantly with time, and unfortunately, there is no foolproof method available to estimate, evaluate, compare and rank the consequences. The impracticability of deontology and utilitarianism has thence resulted in clinicians adopting the principle-based ethics for modern day medical practice.10,12
In 2017, Victoria became the first Australian state to legalise physician-assisted suicide, with the law set to take effect in 2019.15 The reason for the delay is to prepare clinicians for the change, and doctors will have the right to refuse provision and administration of assisted-dying substance if they are against euthanasia.15 Euthanasia is a highly controversial topic, and the terms ‘mercy killing’ and ‘assisted suicide’ are often used; and the discussion usually revolves around pain and the terminally ill cancer patients.1 Nevertheless, pain is not the only determinant of poor quality of life,1 and as described by Saunders, most patients dislike the dependence and helplessness around others more so than being terminally ill.16 Referring back to Rebecca’s case, she has mentioned that she “didn’t want to live like this”, suggesting that she is overwhelmed by a sense of helplessness and hopelessness with living her life as a quadriplegic and want desperately to die. The issue here lies with Rebecca’s wish to refuse nutrition, which is an expression of control and autonomy,17 one of the last cornerstones of quality of life in situations of unbearable suffering.18-20 There is also the dilemma here on whether nutrition can be regarded as a form of treatment. Nutrition is essential for survival and therefore, not regarded as treatment. However, in an individual who refuses nutrition, a physician’s intervention by ‘force feeding’ with a naso-gastric tube against the patient’s will can be seen as a result of invasion, and must therefore be considered to be part of medical treatment.1 According to the principle of respect for patient’s autonomy, a patient’s right to refuse treatment is fundamental and must be respected,21,22 and this right to treatment refusal is protected under the common law value of autonomy in Australia.1,23 Doctors are therefore compelled to respect patient’s wishes,11,24 provided that the patient is assessed to be competent and informed consent has been obtained.11,12
In assessing a patient’s competency, no formal testing is required and is usually based on the doctor-patient interaction,25 which puts a competent patient at risk of being subjected to unwanted treatment, and the incompetent patient suffering from the harmful effects of bad medical decisions.26-28 Current determination of competency is based on four components—patient’s ability to communicate a choice, understand the relevant information, appreciation of the situation and its consequences, and rationalisation and reasoning with the information provided.29 As can be seen here, these four components have omitted the patient’s emotional states, which in turn, can greatly affect decision-making.30 In this case here, Rebecca seemed to be suffering from depression as she had ‘lost hope and appeared unhappy’, and could be making an impulsive, irreversible decision to seek an early death by refusing nutrition, which could plausibly be attributed to symptoms of depression.31 Because assessment of competency generally does not address a patient’s emotional state, Rebecca will be deemed competent if she is able to communicate choices, understand information and appreciate the situation and its consequences;32 and will therefore, be in the best position to determine her treatment independently,28 and her GP will have the legal obligation to respect her wish despite her depression.33 Still, doctors are bound to an ethic of healing; and although respect for patient’s autonomy is important, doctors should make a clear distinction between competence and patient autonomy by ensuring that the patient’s emotional state does not influence treatment option.28 To do this, a doctor should engage more closely with these patients through education and vigorous persuasion33 instead of abandoning patients who refused treatment without trying to understand their rationales behind.34 While doctors might face the risk of infringing a competent patient’s autonomy when trying to evaluate a patient’s emotional state, it is imperative that a stringent standard for competence evaluation, which involves both cognitive and affective elements,35 be reserved for patients who make decisions that are life-threatening and against public and professional rationality.28 If after all these steps have been taken, and Rebecca is found to be competent, her GP will have to respect her decision to die without intervention.
The principle of beneficence refers to actions aimed at the well-being of others,12 but when it involves healthcare workers and patients, beneficence becomes an obligation;10 and providing nutrition in Rebecca’s case will ensure her survival, which complies with the concept of beneficence. However, what is perceived as beneficial might be viewed as harmful or meaningless to another person.36 Rebecca’s view of beneficence seems to contradict with the idea of artificial nutrition necessary for her survival; she would rather die by refusing nutrition than be trapped as a quadriplegic individual and the greatest benefit in her view would be to be allowed to die. Proponents of euthanasia will also agree that spiritual pain, change of body image, and loss of sense of life—all of which Rebecca has experienced—are forms of suffering beyond symptom control;1,37,38 and that dying provides relief from the unbearable suffering.4 Conversely, Pelligrino and Thomsama argue that from the paternalistic viewpoint, physicians are trained with advanced medical knowledge and insight, and are therefore in a better position to act in the patient’s best interest by using beneficence to override patient’s wishes when there is a difference of opinion.34 This paternalistic viewpoint may not be entirely beneficial for Rebecca since medical intervention with a naso-gastric tube only prolongs her life but does not improve her quality of life, given that she will still live with quadriplegia and will still need to depend on her parents for her daily functioning. Also, most modern ethicists consider strong paternalism—patient clearly has the ability to make informed decisions—to be mostly unjustifiable.12 A proposed solution which combines beneficence and autonomy, known as ‘the joint view’ by De Haan, would justify refusing nutrition in Rebecca’s best interest because she is suffering unbearably and hopelessly living life as a quadriplegic individual.39 Correspondingly, it is the doctor’s role to render support for what decision Rebecca feels will benefit her the most.
Rebecca’s idea of refusing nutrition will certainly cause her to die earlier, given that she is not suffering from cognitive impairment or any systemic illness, and therefore, her refusal to nutrition is considered a form of suicide.40,41 This brings to the discussion, the principle of non-maleficence, which means to ‘not do harm to others’.1 This principle is also stated in the Hippocratic Oath,12 which is still regarded as the cornerstone and foundation of modern medicine.42 Strict adherence to the principle of non-maleficence would mean that refusing nutrition will cause harm to Rebecca by hastening her arrival of death, and a medical practitioner who preaches to ‘do no harm to others’ will have to forcefully intervene with a naso-gastric tube against her will, which will not only violate her autonomy but will also be a personal assault40,41 which constitutes harm. Beneficence and non-maleficence are usually considered together in the healthcare setting to produce net benefit over harm.43 Given that the earlier arguments have agreed that Rebecca has her right to choose her own treatment choice that is in her best interest, it thus follows that what constitutes harm is also best determined by her.1 Many healthcare professionals hold the assumption that refusing nutrition which leads to death by starvation is an unpleasant way to die1,4and it accentuates discomfort, pain and suffering.4 However, studies have shown that death by starvation may not be uncomfortable if it is appropriately managed.22,44 Therefore, Rebecca’s idea of refusing nutrition can be considered morally acceptable, in that, it does not cause ‘harm’ in terms of discomfort, pain and suffering, even though the end result is potential death.
The final moral principle to be discussed is justice, which is often regarded as synonymous with fairness, rightness and equity.12 Justice can be classified into three groups when it comes to healthcare ethics: distributive justice, rights-based justice and legal justice.43 In this case here, rights-based justice appears to be the most relevant for discussion since it is widely acknowledged to be integrally linked to respect for autonomy,45 where there is equal right for every patient to exercise his or her autonomy and the fundamental moral obligation for doctors to respect each patient’s autonomy.46 Hence, in the event that Rebecca insists on refusing nutrition, the role of her GP will be to support her by ensuring non-intervention.
In conclusion, this paper has explored the case of Rebecca, a 25-year-old female patient who became quadriplegic after a car accident. Guided by the four principle-based ethics of autonomy, beneficence, non-maleficence and justice, Rebecca’s situation here has illustrated that respect for autonomy takes precedence when competency and informed consent have been determined. Rebecca’s GP will therefore have to comply with her decision to refuse nutrition. Although this paper focuses on passive euthanasia, the end result is the same with active euthanasia—death; and there is a divided sentiment on whether euthanasia is morally and legally acceptable. With Victoria setting the example through legalisation of physician-assisted suicide, further evaluation is still required from this newly implemented system, along with further study of countries where euthanasia is legal, to understand Australia’s stand in euthanasia.
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