The Uncomfortable Deathbed by Rachael Ryan

Rudi Dobron was 63 when, in 2004, he first developed symptoms of laryngeal cancer (Syme 2007). Following an initial 6 weeks of radiotherapy, in effort to conserve his ability to speak, Dobron was pronounced ‘cured’. Three years subsequent to his initial diagnosis, however, the cancer returned. Here, his larynx was removed and a tracheostomy, which allowed him to breathe through a passageway in his neck, was inserted. Dobron lost his ability to speak and, following a further operation to remove his oesophagus, experienced great difficulty in swallowing. Four months later, the cancer reappeared in Dobron’s lymph nodes and, due to its proximity to his carotid artery, could not be removed. Here, in effort to ‘buy time’, he began engagement in 6-cycles of in-patient ‘palliative chemotherapy’. This treatment was later determined to be futile by his oncologist and was ceased prematurely. By now, Dobron was suffering from mouth ulcers, constipation, diarrhoea, loss of appetite and pneumonia; his pain controlled by oral liquid morphine. Gradually, the suffering associated with Dobron’s decline became intolerable, such that he was experiencing extreme difficulty swallowing liquids, occasional shortness of breath, and significant weight and energy loss; all accompanied by his fundamental inability to speak (Syme 2007; McIntyre 2009).

Eventually, as it was determined that there was no prospect of recovery or improvement in his circumstances, and that his deterioration and suffering would continue to decline, Dobron became determined to die (McIntyre 2009). Due to the absence of alternatives, Dobron sought relief from his intolerable suffering in a way that he considered would be relatively quick, peaceful, and lawful: to refuse food and fluids until starvation and dehydration prompted his eventual demise (Syme 2007).

Dobron was later advised of the comforts of in-patient palliative care and entered Melbourne hospice Caritas Christi, a Catholic palliative care unit, for respite. Here it could be assumed that, with sufficient sedation and good mouth care — two things that are standard under palliative care guidelines — Dobron would likely die in 5-7 days, and with minimal suffering (Syme 2007).  He appointed his partner Beverley McIntyre to be his Medical Enduring Power of Attorney (MEPA), and clarified his wishes for the provision of maximum relief from pain and suffering and discontinuation of life-prolonging treatment in an Advance Healthcare Directive. Although both forms were handed to his doctor upon admission, Dobron passed away a protracted 47 days later (Syme 2007).

 Dr Rodney Syme, who wrote of Dobron’s case in his 2016 novel ‘Time to Die’, examined his medical record and the details of his experience in palliative care. Despite his very clear intentions to refuse nutrition and hydration and to be kept comfortable while doing so, including rejection of percutaneous endoscopic gastrostomy (PEG) tube feeding and requests for sedative medication, it took 32 days before Dobron finally received 24-hour sedation (Syme 2007). Evidence of his extreme, unremitting suffering included incontinence, pressure sores, a white-coated tongue, headaches, depression, frustration, feelings of choking, breathlessness, weakness, ‘desire to die’ and fundamentally, his inability to communicate (McIntyre 2009). According to Syme, ‘the prescribed dosages of analgesia and sedation were minimal in strength, particularly considering the ethical imperative that patients should not die with unrelieved suffering’ (Syme 2007).  Despite the great clarity with which Dobron pronounced his intentions, both initially and over the duration of his care at Caritas Christi, palliative care staff did not honour them. Neither his Medical Enduring Power of Attorney (MEPA) form nor his Advance Healthcare Directive could be found in his medical record after he died (Syme 2007; McIntyre 2009).

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When Rudi Dobron entered palliative care, he was ready to die. Instead, for a further seven weeks, he endured prolonged, intolerable suffering, engendered by deficits in the modern approach to dying. I concur with urologist Rodney Syme and a large aggregate of others that such discomfort could have been avoided by an earlier death (Syme 2007). To this end, it is a matter of urgency that a comprehensive regulatory framework be introduced, based on appropriate ethical principles and values, to allow the incorporation of physician-assisted dying into palliative care practice
(Parliament of Victoria 2016). Consideration of the four-principles and capabilities approaches to ethics and scrutiny of current legislation qualify the significance of the aforementioned premise. Some suffering cannot be palliated and will end only with death. Such circumstances are not confined to the terminally ill, but impinge also upon those whom endure ‘advanced incurable illnesses’ (Syme 2007). Doctors have an ethical imperative to relieve suffering and to respect patients’ autonomy, which, in 3-5% of cases where symptoms cannot be adequately palliated, introduces the necessity to hasten death when it is requested rationally (Denton 2015). With this, I submit that terminal sedation, a practice that will ‘lead to a comfortable death, but not too quickly’, is oftentimes disproportionate as the sole response to irremediable symptoms (Billings & Block 1996).  Notably, Palliative Care Australia (PCA) acknowledges that assisted dying is requested both rationally and recurrently (Syme 2007). I assert that every person is entitled to be the critic of their own suffering and to have sovereignty over the time and manner of their death, with confidence that, unlike Dobron, their intentions will be honoured.

  1. Origins of Palliative Care Ethics

The Catholic Church provides 57% of palliative care in Australia; anchored philosophically in Judaeo-Christian theology (Denton 2015). Notions including the ‘sanctity of life’ and ‘value of suffering’ underpin current guidelines for end-of-life care. Current attitudes stand to confront physician-assisted dying, in conflict with palliative care goals of dignity, self-determination, and the prevention of suffering. Clause 1.4 c) of the AMA Code of Ethics directs doctors to ‘respect the right of a severely and terminally ill patient to receive treatment for pain and suffering, even when such therapy may shorten a patient’s life’ (Australian Medical Association 2004). In congruence with The Doctrine of Double Effect, PCA holds that end-of-life care intends neither to hasten nor postpone death, and justifies the practice of terminal sedation on the basis of intention to relieve suffering (Palliative Care Australia 2016). Here, the parallel that exists with physician-assisted dying is overlooked: that providing control to those enduring irremediable symptoms is intended not to cause death, but to relieve unremitting suffering.

  1. Four-Principles Approach

Physician-assisted dying is considered ethically permissible conduct under Beauchamp and Childress’ ‘four-principles’ system of ethics; based on autonomy, beneficence, non-maleficence and justice (Kerridge, Lowe & Stewart 2013). Health professionals have a fundamental legal and ethical duty to respect the autonomy of their patients, such that rational requests for physician-assisted dying should be honoured (Kerridge, Lowe & Stewart 2013). Reference to individual sovereignty is made in clause (k) of the AMA Code of Ethics, which obliges that doctors ‘respect the rights of patients to make their own decisions about treatment or procedures’ (Australian Medical Association 2004). This principle extends also to the right of physicians to conscientiously object to the provision of assisted dying, particularly in clause (p) of the Code: ‘When a personal moral judgement or religious belief alone prevents you from recommending some form of therapy, inform your patient so that they may seek care elsewhere’ (Australian Medical Association 2004).

Physician-assisted dying is undoubtedly congruent with the principle of beneficence, which requires that therapy be provided when outcomes are deemed advantageous to the patient (Kerridge, Lowe & Stewart 2013). Outcomes of dignity, sense of security, control and certainty, and alleviation of suffering are evident in overseas frameworks (Syme 2007). Notably, clause 1.4 a) of the AMA Code of Ethics elicits that doctors should, ‘where death is deemed to be imminent and where curative or life-prolonging treatment appears to be futile, try to ensure that death occurs with dignity and comfort’ (Australian Medical Association 2004).  The Latin phrase ‘primum non nocere’, or ‘above all, do no harm’, is central to the principle of non-maleficence (Kerridge, Lowe & Stewart 2013). Current palliative care practice maintains the tenet that ‘death shall not be hastened’, and thus, in contention with the principle of non-maleficence, does not palliate all suffering (Parliament of Victoria 2016).  Some symptoms will end only with death, however action to this effect is currently unregulated and presents risk of prosecution, ancillary suffering and trauma. Physician-assisted dying, the introduction of which should be stringently regulated, poses no possibility of further harm to its stakeholders (Bartels & Otlowski 2010).
Ideals of non-discrimination and equality of entitlement to care at the end-of-life are currently inconsistent in practice, and do not pertain to the principle of justice (Parliament of Victoria 2016). Reformation of physician-assisted dying so to be legal and transparent, together with safeguards and guidelines for regulation and protection, could amplify congruence with this principle.

  1. The Capabilities Approach and The Nature of Suffering

Notwithstanding differences in method, there is a convergence of agreement between proponents of the four-principles and capabilities approaches to ethics. As described by Eric Cassel (2004) in ‘The Nature of Suffering’:

 Suffering is the specific distress that occurs when persons feel their intactness and integrity as persons are threatened or disintegrating, and it continues until the threat is gone or intactness or integrity are restored.

Toleration of suffering is an immeasurable, subjective and private matter, to which the capabilities approach offers guidance. In its description of requirements to live, and live well, with profound consideration of individual circumstances, an application of the capabilities approach to end-of-life decision-making could ensure that no individual undergoes care that is unsolicited nor imposed by rigid, universal guidelines (Syme 2007). Martha Nussbaum’s list of The Central Human Capabilities provides a valuable summary, examples including the freedom to have good health, to play, and to have political and material control over one’s environment (Kerridge, Lowe and Stewart 2013). It is unethical that a person with unremitting suffering and whom lacks capacity to act, accomplish and function, should be refused the ultimate choice to determine where and when they die.

  1. Australian Legislation

Despite multiple attempts, physician-assisted dying is illegal in all Australian jurisdictions (Parliament of Victoria 2016). Notwithstanding, various well-publicised cases of assisted dying without prosecution exist, prompting my discomfort with the current legislation and the leniency of its application (Kuhse & Singer 1988). Although justice of outcomes is apparent per case-by-case analysis, I assert that public apprehension toward the administration of justice, lack of transparency, and inadequate protection – for medical practitioners from prosecution and patients from misconduct and inadequate care – are legitimate consequences of such practice. I also question whether the existing legal framework reflects contemporary community values (Parliament of Victoria 2016).

  1. Existing Legal Framework

In Queensland, there is substantial doubt as to the conclusiveness of criminal liability in palliative care (Ashby, White & Willmot 2011). Under the Queensland Criminal Code Act 1899 (QCCA), ‘a person who does any act or makes any omission which hastens the death of another person who, when the act is done or the omission is made, is labouring under some disorder or disease arising from another cause, is deemed to have killed that other person’ (Criminal Code Act 1899 (QLD) s 296). Any person who unlawfully kills another is guilty of either murder or manslaughter (Criminal Code Act 1899 (QLD) s 300), and is criminally responsible regardless of the victim’s consent (Criminal Code Act 1899 (QLD) s 284). Although death by suicide is no longer a criminal offence in Australia, any person who aids the suicide of another is criminally liable (Criminal Code Act 1899 (QLD) s 311). Under the Act, doctors and those performing under a doctors’ orders are protected from criminal responsibility if palliative care is provided in ‘good faith and with reasonable care and skill’, and ‘is reasonable, having regard to the other person’s state at the time and all the circumstances of the case’ (Criminal Code Act 1899 (QLD) s 282A). This applies even when death is hastened, but does not, as might be necessary for the legality of physician-assisted suicide, vindicate intention to kill or action to assist suicide. Also required is that ‘the provision of the palliative care is reasonable only if it is reasonable in the context of good medical practice’ (Criminal Code Act 1899 (QLD) s 282A).

Under the common law, requirements for criminal liability are significantly different. Although the Doctrine of Double Effect has not yet been established in Australian common law, it has received judicial endorsement overseas, based on the threshold that there is an intention to relieve suffering (R v Cox (1992) 12 BMLR 38). This notion is difficult to prove ‘beyond reasonable doubt’ as per requirements of the criminal law, and, due to its divergence from fundamental criminal law principles, contributes to the ambiguity of legislation as it currently stands (Ashby, White & Willmot 2011).

Similarly, research has found Queensland legislation surrounding futile medical treatment to be complex and hence poorly understood by medical professionals (Willmott et al. 2016). Futile medical treatment is that which ‘gives no, or an extremely small, chance of meaningful prolongation of survival and, at best, can only briefly delay the inevitable death of the patient’ (Queensland Government 2016). Generally, futility is determined subjectively by medical professionals, based on principles of fairness and the patient’s best interests. Section 79 of the Guardianship and Administration Act 2000 (QLD) renders it ‘an offence for a health provider to carry out health care for an adult with impaired capacity unless the appropriate consent is obtained’. Here, ‘health care’ is defined as the practice of ‘withholding or withdrawal of a life sustaining measure if the commencement or continuation of the measure would be inconsistent with good medical practice’.  At common law, however, doctors are liable only if their assessment of futility is demonstrated to be inappropriate. Herein lies the discord: that, under the Guardianship and Administration Act 2000 (QLD), it may be considered an offence to provide treatment if necessary consent is not attained, even if such treatment is appropriate (Queensland Government 2016).

In Queensland, adults are ‘presumed to have capacity for a matter’ unless evidence substantiates otherwise (Powers of Attorney Act 1998 (QLD) sch 1 s 76(1)). In this case, a patient’s Advance Health Directive or Enduring Power of Attorney can make decisions to withhold or withdraw life-sustaining treatment (Powers of Attorney Act 1998 (QLD); Guardianship and Administration Act 2000 (QLD)). Doctors who act in accordance with an Advance Health Directive are offered ‘no less protection than if [the] adult gave health consent’ (Guardianship and Administration Act 2000 (QLD) s 80), but may still be criminally liable under the provisions of the Criminal Code – particularly since ‘consent to death is immaterial’(Criminal Code Act 1899 (QLD) s 284). For this reason, such that the autonomous wishes of those who rationally request physician-assisted dying are forbidden, I refute the notion that, in current Queensland legislation, consent is the legal embodiment of autonomy (McLean 2009).

  1. Law Reform

The law should be coherent, transparent, and adequately enforced. To accomplish this, and to achieve profound improvements in palliative care, Queensland should undergo legislative reform to accommodate physician-assisted dying under a framework of stringent circumstances and cautious safeguards (Parliament of Victoria 2016). Multiple studies have revealed doctors’ significant lack of understanding of obligations at the end of life (Ashby, White & Willmot 2011). Key areas include: The Doctrine of Double Effect, the withdrawal and withholding of futile treatment, and consent. Despite widespread awareness of cases of physician-assisted dying, offenders are seldom convicted, and the judgements of existing cases have demonstrated great leniency (Parliament of Victoria 2016). Notwithstanding, legal protection is not guaranteed in such cases, and may lead health professionals to practice reluctantly and in fear of prosecution (Ashby, White & Willmot 2011). Subsequently, as in the case of Dobron, patients are vulnerable to inadequate care (Syme 2007). I advocate for amendment of the Criminal Code Act 1899 (QLD) to protect those health professionals whose conduct is within the perimeters of the proposed framework.

Irrespective of his relentless suffering and clearly expressed wishes to die, Rudi Dobron was obliged to an unbecoming final seven weeks of life in palliative care; a situation that is currently unavoidable within the bounds of Queensland legislation (Syme 2007). In scrutiny of this, and in consolidation with the four-principles and capabilities approaches to ethics, I assert that the development of end-of-life legislature to allow physician-assisted dying should be considered a priority.  At present, palliative care cannot alleviate all suffering, and existing legislation limits the autonomy of those with unremitting suffering to make end-of-life decisions (Parliament of Victoria 2006). As demonstrated overseas, outcomes of physician-assisted dying are undoubtedly beneficent and pose no significant harm to stakeholders (Denton 2015). In conflict with principles of non-maleficence and justice, current legislature presents risks of discrimination, vulnerability, malpractice, prosecution, ancillary suffering and trauma – all of which could be improved with legislative reform (Parliament of Victoria 2006). Moreover, the capabilities approach to ethics emphasises the immeasurable and subjective nature of suffering, and the value of autonomy in end-of-life decisions (Kerridge, Lowe & Stewart 2013). Current legislation in Queensland is complex, poorly understood and ineffective in practice (Ashby, White & Willmot 2011). Well-publicised cases of physician-assisted dying have revealed leniency in both prosecution and judgement, and hazard public apprehension, non-transparency, and inadequate protection for medical practitioners and patients, alike. Rational requests for relief from suffering should be acknowledged in all cases, allowing that some suffering will end only with death (Syme 2007). Provision of control over end-of-life decisions is a powerful palliative tool, and, in response to incessant suffering in the community, would be a welcome accompaniment to current palliative care guidelines (Parliament of Victoria 2006).

 

Works Cited

Australian Medical Association 2004, Code of Ethics, Australian Medical Association, viewed 24 May 2017, <https://ama.com.au/sites/default/files/documents/AMA%20Code%20of%20Ethics%202004.%20Editorially%20Revised%202006.%20Revised%202016_0.pdf&gt;.

Bartels, L & Otlowski, M 2010, ‘A right to die? Euthanasia and the law’, Australian Journal of Law and Medicine, vol. 17, no. 4, pp. 532-55.

Billings, A & Block, B 1996, ‘Slow Euthanasia’, Journal of Palliative Care, vol. 12, no. 4, pp. 21-30.

Cassel, E 2004, The Nature of Suffering and the Goals of Medicine, 2nd edn, Oxford University Press.

Criminal Code Act 1899 (QLD) s 282A.

Criminal Code Act 1899 (QLD) s 284.

Criminal Code Act 1899 (QLD) s 296.

Criminal Code Act 1899 (QLD) s 300.

Criminal Code Act 1899 (QLD) s 311.

Denton, A 2015, ‘An Argument for Assisted Dying in Australia’, transcript, The Wheeler Centre, 30 October, viewed 25 May 2017, <https://www.wheelercentre.com/notes/an-argument-for-assisted-dying-in-australia-andrew-denton-s-di-gribble-argument-in-full&gt;.

Guardianship and Administration Act 2000 (QLD) s 79.

Guardianship and Administration Act 2000 (QLD) s 80.

Johnson, D, Kassner, C, Houser, J & Kutner, J 2005, ‘Barriers to effective symptom management in hospice’, Journal of Pain and Symptom Management, vol. 29, no. 1, pp. 69-79.

Kerridge, I, Lowe, M & Stewart, C 2013, Ethics and Law for the Health Professions, 4th edn, The Federation Press.

Kuhse, H & Singer, P 1988, ‘Doctors’ practices and attitudes regarding voluntary euthanasia’, Medical Journal of Australia, vol. 148, no. 12, pp. 623-627.

Legal and Social Issues Committee 2016, Inquiry into end of life choices: Final Report, Parliament of Victoria.

McIntyre, B 2009, Submission No 150 to Inquiry into end of life choices, Legal and Social Issues Committee, Parliament of Victoria.

McLean, S 2009, Autonomy, Consent and the Law, Rouledge, United Kingdom.

McLean, S 2016,Terminal Sedation – Good Medicine? Good Ethics? Good Law?’, QUT Law Review, vol. 16, no. 1, pp.113-124.

Palliative Care Australia 2016, Euthanasia and Physician-Assisted Suicide, viewed 24 May 2017, http://palliativecare.org.au/wp-content/uploads/dlm_uploads/2015/08/20160823-Euthanasia-and-Physician-Assisted-Suicide-Final.pdf

Powers of Attorney Act 1998 (QLD) sch 1 s 76(1).

Queensland Government 2016, End-of-life Care Part 2: Ethical and Special Considerations, Implementation guidelines, Centre for Healthcare Improvement, Queensland.

R v Cox (1992) 12 BMLR 38.

Seale, C 2010, ‘Continuous Deep Sedation in Medical Practice: A Descriptive Study’, Journal of Pain and Symptom Management, vol. 39, no. 1, pp. 44-53.

Syme, R 2007, Time to Die, Melbourne University Press, Melbourne.

White, B, Willmot, L & Ashby, M 2011, ‘Palliative care, double effect and the law in Australia’, Internal Medicine Journal, vol. 41, no. 6, pp. 485-492.

Willmott, L, White, B, Close, E, Gallois, C, Malcolm, P, Graves, N, Winch, S, Callaway, L & Sheperd, N 2016, ‘Futility and the Law: Knowledge, Practice and Attitudes of Doctors in End Of Life Care’, QUT Law Review, vol. 16, no. 1, pp. 55-75.

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