- Email: [email protected]
Do you have a right to decide? Or do we have a right to acquiesce?
Australian Critical Care 28 (2015) 72–76
Contents lists available at ScienceDirect
Australian Critical Care journal homepage: www.elsevier.com/locate/aucc
Case Study
Do you have a right to decide? Or do we have a right to acquiesce? Gregory Comadira MBBS, FCICM, FACEM a,∗ , Lucy Hervey RN, MCritCareN, BDes(Hons) a , James Winearls BSc (Hons), MBBS, MRCP, FCICM a , James Young-Jamieson MBBS a , Andrea Marshall RN, PhD b a
Gold Coast University Hospital, Australia NHMRC Centre for Research Excellence in Nursing, Centre for Health Practice Innovation, Menzies Health Institute Queensland, Griffith University and Gold Coast University Hospital, Australia b
article information Article history: Received 30 January 2015 Received in revised form 17 April 2015 Accepted 20 April 2015 Keywords: Donation after cardiac death Organ donation Capacity Ethics Right to refuse Intensive care
a b s t r a c t Clinicians make decisions about patient management on a daily basis and are required to act in a way that is both legally and ethically correct. To act legally requires compliance with a set of rules which reflect the values and interests of society. Ethical decisions are based on what we believe as a group to be morally right. Morals are, however, unique to the individual. Balancing the legal, ethical and moral dimensions of clinical decisions has the potential, therefore, to generate conflict for the individual practitioner. In this paper we report a case study of a patient with a high cervical spine injury resulting in quadriplegia, without prospect of a ventilator independent life. The patient, who was assessed as having capacity to make decisions, subsequently elected to have treatment withdrawn. In this case, withdrawal of treatment constituted removal of mechanical ventilation which ultimately resulted in death. The patient also requested for his organs to be donated after he was deceased. This case study, to our knowledge, is the first report of donation after cardiac death following a high cervical spinal injury in a cognitively intact patient. As such, this case study allows us to discuss the moral, ethical and legal implications of donation after cardiac death following withdrawal of medical treatment. Crown Copyright © 2015 Published by Elsevier Ltd. on behalf of Australian College of Critical Care Nurses Ltd. All rights reserved.
1. Introduction “I disapprove of what you say, but I will defend to the death your right to say it.”1 Critical care is an area of clinical practice that provides a constant intersection of the law, ethics and individual morals. Clinicians make decisions about patient management on a daily basis and are required to act in a way that is both legally and ethically correct. To act legally requires compliance with a set of rules which reflect the values and interests of society, that is, what society as a whole deems right and wrong.2 Ethical decisions are based on principles of what we believe as a professional group to be morally right.3 Morals are, however, unique to the individual.4 Balancing the legal, ethical and moral dimensions of clinical decisions has the poten-
∗ Corresponding author. Tel.: +61 0409754403. E-mail address: [email protected] (G. Comadira).
tial, therefore, to generate conflict for the individual practitioner. Thus one can act legally, indeed be compelled to do so, but at the same time have an internal moral conflict. This conflict can result in moral distress,5,6 a concept that has been associated with end-oflife decision making in the intensive care unit.7 In this case study we discuss the moral, ethical and legal implications of withdrawal of medical treatment and donation after cardiac death. 2. Case history A 59 year old male was admitted to an Intensive Care Unit (ICU) in southeast Queensland after experiencing salt water immersion followed by five minutes of cardiac arrest. At the scene, cardiopulmonary resuscitation was initiated. After return of spontaneous circulation, ineffectual respiratory effort necessitated intubation and ventilation. This was performed with full cervical spine precautions. Examination at the receiving tertiary ICU revealed a Glasgow Coma Score of 10/15. The patient was awake, and able to obey com-
http://dx.doi.org/10.1016/j.aucc.2015.04.004 1036-7314/Crown Copyright © 2015 Published by Elsevier Ltd. on behalf of Australian College of Critical Care Nurses Ltd. All rights reserved.
G. Comadira et al. / Australian Critical Care 28 (2015) 72–76
mands with facial movements. Neurological examination revealed intact cranial nerves with complete quadriplegia at C3 motor and sensory level. A computed tomography scan of the patients’ cervical spine revealed a posteriorly displaced fracture of the odontoid process with moderate posterior subluxation of C1 on C2. He was fully ventilator dependent. A magnetic resonance image scan confirmed the type III C2 odontoid process fracture with posterolateral displacement and evidence of cord laceration at this level – see Figs. 1 and 2. Communication was established and the patient was able to respond to questions through blinking and tongue movements. On day two the patient expressed his wish for the withdrawal of life sustaining ventilation. His family confirmed this was consistent with what he had previously stated over his lifetime. Neurosurgical and intensive care specialists were consulted, and a consensus of
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opinion was for a period of time to be allowed to pass so that the extent of his injury was fully clarified, and his decision verified. Another seven days from the time of injury was negotiated with the patient for assessment of any signs of recovery to be seen, and to allow for a further period of time for the patient and family to consider the implications of his request. There was no evidence of recovery evident by day eight, and the patient remained steadfast in his wishes. Multiple discussions were held with the patient, his family and the patient’s solicitor. It was unanimously agreed that withdrawal of treatment was appropriate given the patient had capacity to make the decision. The patient also indicated at this time that he wished to donate his organs. All discussions and decisions were made in the absence of the effects of narcotic analgesia and sedative medications. In consultation with the patient and family, the decision was made to palliate via removal of the life support with concomitant sedation, then proceed to organ donation after cardiac death.
3. Discussion Clinicians working with critically ill patients are often faced with moral, ethical and legal dilemmas, many of which relate to end-oflife care.8 This case highlights several pertinent questions when systematically addressed. These help to guide collaborative decision making and clinical practice. These questions serve as the focus for this case study discussion.
3.1. Can a patient refuse therapy?
Fig. 1. Extensive cord oedema with in the upper cervical cord to the level of C4.
Fig. 2. Cord haematoma at level of C2.
In the context of life sustaining medical treatment, two broad situations arise. The competent patient who refuses treatment or the competent patient who demands what is considered medically futile treatment. The current case falls into the former situation. The law has consistently recognised such a refusal to be lawful. This is also consistent with the autonomy model of decision making, which is based on informed consent and the ability of patients to make choices about treatment alternatives.9 An adult who has the requisite capacity may choose not to receive medical treatment – even if that treatment is needed to stay alive.10 This raises the question as to how a patient’s unequivocal right to refuse medical treatment can be assessed. The House of Lords – the highest appellate English Court was involved in a similar case to the one we describe here where a patient experienced spinal cord haemorrhage resulting in quadriplegia and subsequently requested the withdrawal of artificial ventilation.10,11 The court, citing similar decisions, determined that the following principles applied to the making of this decision: (1) The patient’s capacity needs to be high where the decision is particularly grave.10 (2) The decision is made by the patient alone, not via outside influence.11 (3) The right to refuse life sustaining therapy may also operate even if the refusal is given in advance of the medical situation.11–13 (4) The patient has all relevant information when refusing treatment.13 Recognition of a patient’s right to refuse treatment is essential. To treat a patient against their stated wishes is, in itself, a harm to the patient and may be viewed by the courts as a form of assault. For example, if a patient wishes to withdraw life sustaining treatment, but the treatment is not withdrawn, the patient is likely to experience severe physical and emotional suffering from the continuation of such treatment. Thus where the patient is competent, to refuse to cease therapy can constitute assault in the same fashion as commencing therapy against the competent patient’s wishes.14,15
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3.2. How is capacity assessed? Provided we establish that the patient has the capacity to refuse therapy, then such refusal is valid. Generally, patients are considered to have capacity to make decisions about their medical care unless there is a compelling reason to think otherwise.16 Assessing capacity is based on four principles. These are the ability of the patient to (1) understand relevant information about their clinical condition and treatment; (2) appreciate their situation; (3) use reason to make a decision; and (4) communicate their choice.17 In the case we describe here, capacity of the patient was assessed following clinical examination and radiological imaging which confirmed the prognosis and gravity of the circumstances. These findings, their impact, and possible outcomes were discussed with the patient, his family and also his solicitor. This discussion was facilitated by the treating medical team which included ICU specialists and neurosurgeons. The patient’s solicitor attended the patient and was confident that the patient understood the gravity of the circumstances and prognosis. The family also independently confirmed that the patient’s current views were consistent with those stated over years. Medical and nursing staff, family and the patient’s solicitor were of the view he was of sound mind. Psychiatric consultation was invited and they were of the view that if the treating team were confident of the soundness of mind that they had no further role. Did our patient have the capacity to refuse therapy? Yes. Can this right be overcome via the gravity of the situation i.e. the “best interests of the patient” versus “life at all costs is in his best interests”? No. A recent case in NSW (Re JS18 ) involved a 27 year old man who required full invasive ventilator support via a tracheostomy since the age of seven. This case outlines the principles of capacity to request removal of therapy well. The decision was that (1) it would be unlawful for a doctor to provide medical assistance if it was refused by a competent adult; (2) refusal of medical therapy does not constitute suicide; and (3) the actions of doctors involved in the medical care would not amount to the criminal act of aiding or abetting suicide. The court makes a distinction between an individual seeking death, from one refusing measures to sustain a life artificially. The legal test was put as follows in the case of Bland19 “But for the artificial measures would the person be alive?” If not, then removal of these artificial measures does not constitute suicide. This is the situation we are confronted with in our case. Having confirmed the right and capacity of the patient to refuse treatment, an approach to the withdrawal of therapy needs to be determined. This is individualised and depends on prevailing levels of analgesia and sedation at the time of decisions to forgo life support, should ensure pre-emptive, timely alleviation of dyspnea, anxiety, pain, and other distressing symptoms.20 Our patient, with a high quadriplegia was fully conscious. After withdrawal of the ventilator support the patient would be unable to initiate a breath. Appropriate sedation and analgesia was administered to prevent patient discomfort and suffering prior to extubation.21 The clinical challenge of palliative sedation arises where the use of the agents hasten death. The use of these agents is based upon the ethical principle of proportionality which originated from Thomas Aquinas in the 13th century.22 The doctrine asserts that, an action in the pursuit of a good outcome is acceptable. Even if it is achieved through means of an unintended but foreseeable negative outcome, if that negative outcome is outweighed by the good outcome. When this principle is applied to the use of palliative sedation the goal is to relieve the intolerable symptoms (the desired good outcome). This is done by the use of medications that will cause loss of social interaction and may hasten death (a foreseeable negative outcome).
This is ethically acceptable, given certain criteria are met. These criteria are that (1) the action in our index case (terminal sedation) is morally good or neutral and (2) the undesired outcome – death, although inevitable in our case is not directly intended23 by the use of these comfort measures. On withdrawal of ventilatory support, death, via respiratory failure was certain due to his high cervical cord lesion; there was no possibility of breathing. Therefore whatever comfort measures were given to him for extubation cannot hasten his death – because death was inevitable within minutes due to his underlying pathology, irrespective of whatever drugs or comfort measures were given to him for this terminal event. In this case the cause of death was quadriplegia caused by traumatic spinal cord injury, not the comfort measures. The issue is therefore, whether we can remove his life support, not the comfort measures afforded thereafter. The patient received midazolam, propofol and fentanyl, and then his life support was removed. In this case the cause of death is the spinal cord injury – causing the patient not to breath resulting in incompatibility with life, therefore withdrawal of life sustaining mechanical ventilation and comfort sedation did not cause death. Were appropriate methods used in the withdrawal process? Yes. A patient-centred approach to withdrawal was incorporated where the patient was included in discussions and decisions regarding the manner of withdrawal and degree of comfort measures to be used; the time of withdrawal; and the context in which withdrawal would occur. The patient, together with his family, planned to spend an evening together, enjoying each other’s company before treatment was withdrawn. 3.3. Donation after cardiac death The patient clearly expressed a wish to donate his organs after death and, this too was something that he had previously discussed with his family. In this case organ donation would have to occur after cardiac death. Donation after cardiac death (DCD) is based upon a legal framework24 with death occurring within a set time frame following the withdrawal of life support to maximise organ viability. The combination of the patients’ injuries, his health status and wishes fulfil the legal requirements for DCD. DCD requires a two-step process. The first step involves clinical suitability and the ANZICS guidelines statement on death and organ donation proscribe eligibility for consideration for DCD and state that DCD donor criteria includes those with ventilator dependent quadriplegia.25 The second step involves the legal requirement for death to occur via cardiac arrest within 60–90 min of treatment withdrawal.25 Thus there is a statutory basis upon which suitability for and timing requirements required for the DCD process to occur. Given this man fulfilled all of the clinical and legal requirements to be suitable to donate, the question then arises with regard to the impact of terminal comfort measures on timing limitations required for the process of DCD. We must first go back to the core of the debate which helps us to reconcile these competing values. There is the right of individuals to choose death with dignity when suffering which must be balanced against the need to uphold the inalienable right to life of every person. In Queensland, unlike most Australian jurisdictions, criminal law is codified. Euthanasia is unlawful to the extent that it constitutes killing under the criminal code.26 It does not, however, constitute a crime to remove medical treatment in the face of futility – “An omission to act would nonetheless be culpable if there was a duty to act. There is no duty to treat if treatment is not in the best interests of the patient”.19 The Collins English Dictionary defines futility as: “lack of effectiveness or success, lack of purpose or meaning”.27 In reality the
G. Comadira et al. / Australian Critical Care 28 (2015) 72–76
determination of futility as it pertains to withdrawal of treatment in most medical patients operates in relation to both a subjective and objective assessment of possible outcomes. In our case futility, was established subjectively by extensive communication with a competent patient who had expressed the view that further treatment, “lacked purpose or meaning” as well as lacking “effectiveness or success.” This subjective determination by the patient was congruent with the professional opinion of two intensivists, two neurosurgeons, and a radiologist who were of the unanimous view that survival in the absence of long term, chronic ventilation would be impossible. Under these circumstances removal of life support, for this patient, does not constitute euthanasia. It must therefore follow the consequent medical measures associated with the comfort of the dying patient, once futility is established it cannot also constitute euthanasia. We argue if the patient can determine, competently and legally, that futile therapy be removed they have the right to be afforded the appropriate comfort measures for the dying process. This issue becomes how much comfort? In particular, does the impost of a time frame associated with DCD affect the principles of providing pharmacologic agents for comfort measures where the pharmacologic agents themselves could potentially hasten death? The ANZICS guidelines outline that circulatory arrest should occur within 60–90 min of treatment withdrawal for the patient to be suitable to continue with DCD.25 The guideline notes that the most influential factor to circulatory arrest is whether the patient will breath independently and effectively when life support is removed.25 In the case of our patient with a pathology involving a high quadriplegia, the patient would be unable to initiate any effectual independent breaths after life support was removed, regardless of pharmacological agents administered for comfort measures. In our case, as we have outlined above, the pathology was such that irrespective of what, if any, agents were used for comfort, death was inevitable upon removal of life support within a matter of minutes. As a matter of principle the question then arises, where-in how much comfort is for the patient’s death and how much is to achieve the death within the timeframe to allow for the donation? In the case we describe here, the pathology was such that time of death was not determined by either the type or indeed dose of comfort agents used. However, we do believe that the potential difficulties may exist regarding a time frame as determined by legislation placed upon the death process. We also believe these difficulties can be reconciled by a two-step process: 1. Fulfilling the ethical requirements regarding withdrawal of life supportive therapy. When they are fulfilled – and only then – the ethical requirements in relation to donation must be considered because these will guide this aspect of the patient’s care. 2. Considering the patient’s wishes in the circumstances that life sustaining measures are withdrawn. This is a larger issue than merely the comfort process and all patient needs should be considered, including their wishes as to how, and in what manner, withdrawal occurs as well as how important it is to that that they donate their organs. In our case the patient expressed that, because survival as he wanted it was not possible, he did not wish to live and requested that supportive therapy be withdrawn. He recognised that withdrawal of supportive therapy would result in death and when this occurred he wished to donate his organs. This means, he requested for the timing of his death to be within the period proscribed by the legislation; this was also congruent with his pathology. A more difficult question arises in circumstances where the pathology is not the time limiting factor, as it was in the case we describe here. For example, should a patient view their treatment as being futile and request receipt of palliative care (including
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pharmacologic agents to promote comfort), it is possible that this management might arguably hasten death thus allowing the patient to fulfil his/her wishes for donation. In such a case it could be argued that administering the pharmacologic agents to provide comfort measures did NOT hasten their death because the patient had competently determined the withdrawal of therapy and consented to the degree of comfort they required during the dying process. This includes their determination that they wanted their death to be in a manner compatible with organ donation. Such a process is compatible with the ethical principles for terminal care in the ICU. 4. Conclusion In this paper we have described a complex moral, ethical and legal case of a patient with a high cervical spine injury and resultant quadriplegia who would be ventilator dependent for the rest of his life. The process through which the patient and family’s wishes could be respected and enacted within an ethical and legal framework is described. The process of shared clinical decision making to enact the patient’s wishes was challenging for the patient, his families and health care providers. This case has highlighted many important moral, ethical and legal issues which we were unable to fully explore in this paper. By systematically working through legal and ethical principles relative to this case we have provided an example of a legally and ethically sound approach to end-of-life care that enabled the patient to die in a manner that was acceptable to him. Authors’ contributions All authors contributed to case study conception, drafting and revising the manuscript. All authors have approved the final version of manuscript. References 1. Hall EB. The friends of Voltaire. Smith & Elder Company; 1906. 2. Gostin LO, editor. Public health law and ethics. New York: University of California Press/The Milbank Memorial Fund; 2002. 3. Corey G, Schneider Corey M, Corey C, Callanan P. Issues and ethics in the helping professions. 9th ed. United States: Cengage Learning; 2014. 4. Kalvemark S, Hoglund AT, Hansson MG, Westerholm P, Arnetz B. Living with conflicts – ethical dilemmas and moral distress in the health care system. Soc Sci Med 2004;58:1075–80. 5. Jameton A. Nursing practice: the ethical issues. Upper Saddle River, NJ: Prentice Hall; 1984. 6. Repenshek M. Moral distress: inability to act or discomfort with moral subjectivity? Nurs Ethics 2009;16:734–42. 7. Elpern E. Moral distress of staff nurses in a medical intensive care unit. Am J Crit Care 2005;14:523–30. 8. Sprung CL, Truog RD, Curtis JR, Joynt GM, Baras M, Michalsen A, et al. Seeking worldwide professional consensus on the principles of end-of-life care for the critically ill. The consensus for Worldwide End-of-Life Practice for Patients in Intensive Care Units (WELPICUS) study. Am J Resp Crit Care Med 2014;190(8):855–66. 9. Will JF. A brief historical and theoretical perspective on patient autonomy and medical decision making: Part II: The autonomy model. Chest 2011;139(June (6)):1491–7. 10. Re B (adult: refusal of medical treatment). All ER 499, 472; 2002. 11. Re T (adult: refusal of medical treatment). All ER 649; 1992. 12. Marlette v Shulman: Adult refusal of medical treatment. 67 DLR (4th) 321.3; 1990. 13. Re C (adult: refusal of medical treatment). All ER 819; 1994. 14. White B, Willmott L, Cartwright C, Parker MH, Williams G. Doctors’ knowledge of the law on withholding and withdrawing life-sustaining medical treatment. Med J Aust 2014;201(4):229–32. 15. Hunter and New England Area Health Service v A (2009) 74 NSWLR 88: [40]. 16. Barton Jr CD, Mallik HS, Orr WB, Janofsky JS. Clinicians’ judgement of capacity of nursing home patients to give informed consent. Psychiatr Serv 1996;47(9):956–60. 17. Sessums LL, Zembrzuska H, Jackson JL. Does this patient have medical decisionmaking capacity? JAMA 2011;306(4):420–7. 18. Re JS. NSWSC302; 2014.
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19. Airedale N.H.S. Trust v Bland. AC 789 House of Lords; 1993. 20. Kompanje EJ, van der Hoven B, Bakker J. Anticipation of distress after discontinuation of mechanical ventilation in the ICU at the end of life. Intensive Care Med 2008;34(9):1593–9. 21. Lo B, Rubenfeld G. Palliative sedation in dying patients: “We turn to it when everything else hasn’t worked”. JAMA 2005;294(October (14)): 1810–6. 22. ten Have H, Welie JV. Palliative sedation versus euthanasia: an ethical assessment. J Pain Symptom Manage 2014;47(1):123–36.
23. Jansen LA, Sulmasy DP. Proportionality, terminal suffering and the restorative goals of medicine. Theor Med Bioeth 2002;23(4–5):321–37. 24. Australian Government Organ and Tissue Authority. National protocol for donation after cardiac death. National Health & Medical Research Council; 2010. 25. Australian and New Zealand Intensive Care Society. The ANZICS statement on death and organ donation. 3.2 ed. Melbourne: ANZICS; 2013. 26. Criminal code Act (1899). 27. Collins English Dictionary – Complete and unabridged 2003 [09.01.15]. Available from: http://www.thefreedictionary.com/futility
Contents lists available at ScienceDirect
Australian Critical Care journal homepage: www.elsevier.com/locate/aucc
Case Study
Do you have a right to decide? Or do we have a right to acquiesce? Gregory Comadira MBBS, FCICM, FACEM a,∗ , Lucy Hervey RN, MCritCareN, BDes(Hons) a , James Winearls BSc (Hons), MBBS, MRCP, FCICM a , James Young-Jamieson MBBS a , Andrea Marshall RN, PhD b a
Gold Coast University Hospital, Australia NHMRC Centre for Research Excellence in Nursing, Centre for Health Practice Innovation, Menzies Health Institute Queensland, Griffith University and Gold Coast University Hospital, Australia b
article information Article history: Received 30 January 2015 Received in revised form 17 April 2015 Accepted 20 April 2015 Keywords: Donation after cardiac death Organ donation Capacity Ethics Right to refuse Intensive care
a b s t r a c t Clinicians make decisions about patient management on a daily basis and are required to act in a way that is both legally and ethically correct. To act legally requires compliance with a set of rules which reflect the values and interests of society. Ethical decisions are based on what we believe as a group to be morally right. Morals are, however, unique to the individual. Balancing the legal, ethical and moral dimensions of clinical decisions has the potential, therefore, to generate conflict for the individual practitioner. In this paper we report a case study of a patient with a high cervical spine injury resulting in quadriplegia, without prospect of a ventilator independent life. The patient, who was assessed as having capacity to make decisions, subsequently elected to have treatment withdrawn. In this case, withdrawal of treatment constituted removal of mechanical ventilation which ultimately resulted in death. The patient also requested for his organs to be donated after he was deceased. This case study, to our knowledge, is the first report of donation after cardiac death following a high cervical spinal injury in a cognitively intact patient. As such, this case study allows us to discuss the moral, ethical and legal implications of donation after cardiac death following withdrawal of medical treatment. Crown Copyright © 2015 Published by Elsevier Ltd. on behalf of Australian College of Critical Care Nurses Ltd. All rights reserved.
1. Introduction “I disapprove of what you say, but I will defend to the death your right to say it.”1 Critical care is an area of clinical practice that provides a constant intersection of the law, ethics and individual morals. Clinicians make decisions about patient management on a daily basis and are required to act in a way that is both legally and ethically correct. To act legally requires compliance with a set of rules which reflect the values and interests of society, that is, what society as a whole deems right and wrong.2 Ethical decisions are based on principles of what we believe as a professional group to be morally right.3 Morals are, however, unique to the individual.4 Balancing the legal, ethical and moral dimensions of clinical decisions has the poten-
∗ Corresponding author. Tel.: +61 0409754403. E-mail address: [email protected] (G. Comadira).
tial, therefore, to generate conflict for the individual practitioner. Thus one can act legally, indeed be compelled to do so, but at the same time have an internal moral conflict. This conflict can result in moral distress,5,6 a concept that has been associated with end-oflife decision making in the intensive care unit.7 In this case study we discuss the moral, ethical and legal implications of withdrawal of medical treatment and donation after cardiac death. 2. Case history A 59 year old male was admitted to an Intensive Care Unit (ICU) in southeast Queensland after experiencing salt water immersion followed by five minutes of cardiac arrest. At the scene, cardiopulmonary resuscitation was initiated. After return of spontaneous circulation, ineffectual respiratory effort necessitated intubation and ventilation. This was performed with full cervical spine precautions. Examination at the receiving tertiary ICU revealed a Glasgow Coma Score of 10/15. The patient was awake, and able to obey com-
http://dx.doi.org/10.1016/j.aucc.2015.04.004 1036-7314/Crown Copyright © 2015 Published by Elsevier Ltd. on behalf of Australian College of Critical Care Nurses Ltd. All rights reserved.
G. Comadira et al. / Australian Critical Care 28 (2015) 72–76
mands with facial movements. Neurological examination revealed intact cranial nerves with complete quadriplegia at C3 motor and sensory level. A computed tomography scan of the patients’ cervical spine revealed a posteriorly displaced fracture of the odontoid process with moderate posterior subluxation of C1 on C2. He was fully ventilator dependent. A magnetic resonance image scan confirmed the type III C2 odontoid process fracture with posterolateral displacement and evidence of cord laceration at this level – see Figs. 1 and 2. Communication was established and the patient was able to respond to questions through blinking and tongue movements. On day two the patient expressed his wish for the withdrawal of life sustaining ventilation. His family confirmed this was consistent with what he had previously stated over his lifetime. Neurosurgical and intensive care specialists were consulted, and a consensus of
73
opinion was for a period of time to be allowed to pass so that the extent of his injury was fully clarified, and his decision verified. Another seven days from the time of injury was negotiated with the patient for assessment of any signs of recovery to be seen, and to allow for a further period of time for the patient and family to consider the implications of his request. There was no evidence of recovery evident by day eight, and the patient remained steadfast in his wishes. Multiple discussions were held with the patient, his family and the patient’s solicitor. It was unanimously agreed that withdrawal of treatment was appropriate given the patient had capacity to make the decision. The patient also indicated at this time that he wished to donate his organs. All discussions and decisions were made in the absence of the effects of narcotic analgesia and sedative medications. In consultation with the patient and family, the decision was made to palliate via removal of the life support with concomitant sedation, then proceed to organ donation after cardiac death.
3. Discussion Clinicians working with critically ill patients are often faced with moral, ethical and legal dilemmas, many of which relate to end-oflife care.8 This case highlights several pertinent questions when systematically addressed. These help to guide collaborative decision making and clinical practice. These questions serve as the focus for this case study discussion.
3.1. Can a patient refuse therapy?
Fig. 1. Extensive cord oedema with in the upper cervical cord to the level of C4.
Fig. 2. Cord haematoma at level of C2.
In the context of life sustaining medical treatment, two broad situations arise. The competent patient who refuses treatment or the competent patient who demands what is considered medically futile treatment. The current case falls into the former situation. The law has consistently recognised such a refusal to be lawful. This is also consistent with the autonomy model of decision making, which is based on informed consent and the ability of patients to make choices about treatment alternatives.9 An adult who has the requisite capacity may choose not to receive medical treatment – even if that treatment is needed to stay alive.10 This raises the question as to how a patient’s unequivocal right to refuse medical treatment can be assessed. The House of Lords – the highest appellate English Court was involved in a similar case to the one we describe here where a patient experienced spinal cord haemorrhage resulting in quadriplegia and subsequently requested the withdrawal of artificial ventilation.10,11 The court, citing similar decisions, determined that the following principles applied to the making of this decision: (1) The patient’s capacity needs to be high where the decision is particularly grave.10 (2) The decision is made by the patient alone, not via outside influence.11 (3) The right to refuse life sustaining therapy may also operate even if the refusal is given in advance of the medical situation.11–13 (4) The patient has all relevant information when refusing treatment.13 Recognition of a patient’s right to refuse treatment is essential. To treat a patient against their stated wishes is, in itself, a harm to the patient and may be viewed by the courts as a form of assault. For example, if a patient wishes to withdraw life sustaining treatment, but the treatment is not withdrawn, the patient is likely to experience severe physical and emotional suffering from the continuation of such treatment. Thus where the patient is competent, to refuse to cease therapy can constitute assault in the same fashion as commencing therapy against the competent patient’s wishes.14,15
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3.2. How is capacity assessed? Provided we establish that the patient has the capacity to refuse therapy, then such refusal is valid. Generally, patients are considered to have capacity to make decisions about their medical care unless there is a compelling reason to think otherwise.16 Assessing capacity is based on four principles. These are the ability of the patient to (1) understand relevant information about their clinical condition and treatment; (2) appreciate their situation; (3) use reason to make a decision; and (4) communicate their choice.17 In the case we describe here, capacity of the patient was assessed following clinical examination and radiological imaging which confirmed the prognosis and gravity of the circumstances. These findings, their impact, and possible outcomes were discussed with the patient, his family and also his solicitor. This discussion was facilitated by the treating medical team which included ICU specialists and neurosurgeons. The patient’s solicitor attended the patient and was confident that the patient understood the gravity of the circumstances and prognosis. The family also independently confirmed that the patient’s current views were consistent with those stated over years. Medical and nursing staff, family and the patient’s solicitor were of the view he was of sound mind. Psychiatric consultation was invited and they were of the view that if the treating team were confident of the soundness of mind that they had no further role. Did our patient have the capacity to refuse therapy? Yes. Can this right be overcome via the gravity of the situation i.e. the “best interests of the patient” versus “life at all costs is in his best interests”? No. A recent case in NSW (Re JS18 ) involved a 27 year old man who required full invasive ventilator support via a tracheostomy since the age of seven. This case outlines the principles of capacity to request removal of therapy well. The decision was that (1) it would be unlawful for a doctor to provide medical assistance if it was refused by a competent adult; (2) refusal of medical therapy does not constitute suicide; and (3) the actions of doctors involved in the medical care would not amount to the criminal act of aiding or abetting suicide. The court makes a distinction between an individual seeking death, from one refusing measures to sustain a life artificially. The legal test was put as follows in the case of Bland19 “But for the artificial measures would the person be alive?” If not, then removal of these artificial measures does not constitute suicide. This is the situation we are confronted with in our case. Having confirmed the right and capacity of the patient to refuse treatment, an approach to the withdrawal of therapy needs to be determined. This is individualised and depends on prevailing levels of analgesia and sedation at the time of decisions to forgo life support, should ensure pre-emptive, timely alleviation of dyspnea, anxiety, pain, and other distressing symptoms.20 Our patient, with a high quadriplegia was fully conscious. After withdrawal of the ventilator support the patient would be unable to initiate a breath. Appropriate sedation and analgesia was administered to prevent patient discomfort and suffering prior to extubation.21 The clinical challenge of palliative sedation arises where the use of the agents hasten death. The use of these agents is based upon the ethical principle of proportionality which originated from Thomas Aquinas in the 13th century.22 The doctrine asserts that, an action in the pursuit of a good outcome is acceptable. Even if it is achieved through means of an unintended but foreseeable negative outcome, if that negative outcome is outweighed by the good outcome. When this principle is applied to the use of palliative sedation the goal is to relieve the intolerable symptoms (the desired good outcome). This is done by the use of medications that will cause loss of social interaction and may hasten death (a foreseeable negative outcome).
This is ethically acceptable, given certain criteria are met. These criteria are that (1) the action in our index case (terminal sedation) is morally good or neutral and (2) the undesired outcome – death, although inevitable in our case is not directly intended23 by the use of these comfort measures. On withdrawal of ventilatory support, death, via respiratory failure was certain due to his high cervical cord lesion; there was no possibility of breathing. Therefore whatever comfort measures were given to him for extubation cannot hasten his death – because death was inevitable within minutes due to his underlying pathology, irrespective of whatever drugs or comfort measures were given to him for this terminal event. In this case the cause of death was quadriplegia caused by traumatic spinal cord injury, not the comfort measures. The issue is therefore, whether we can remove his life support, not the comfort measures afforded thereafter. The patient received midazolam, propofol and fentanyl, and then his life support was removed. In this case the cause of death is the spinal cord injury – causing the patient not to breath resulting in incompatibility with life, therefore withdrawal of life sustaining mechanical ventilation and comfort sedation did not cause death. Were appropriate methods used in the withdrawal process? Yes. A patient-centred approach to withdrawal was incorporated where the patient was included in discussions and decisions regarding the manner of withdrawal and degree of comfort measures to be used; the time of withdrawal; and the context in which withdrawal would occur. The patient, together with his family, planned to spend an evening together, enjoying each other’s company before treatment was withdrawn. 3.3. Donation after cardiac death The patient clearly expressed a wish to donate his organs after death and, this too was something that he had previously discussed with his family. In this case organ donation would have to occur after cardiac death. Donation after cardiac death (DCD) is based upon a legal framework24 with death occurring within a set time frame following the withdrawal of life support to maximise organ viability. The combination of the patients’ injuries, his health status and wishes fulfil the legal requirements for DCD. DCD requires a two-step process. The first step involves clinical suitability and the ANZICS guidelines statement on death and organ donation proscribe eligibility for consideration for DCD and state that DCD donor criteria includes those with ventilator dependent quadriplegia.25 The second step involves the legal requirement for death to occur via cardiac arrest within 60–90 min of treatment withdrawal.25 Thus there is a statutory basis upon which suitability for and timing requirements required for the DCD process to occur. Given this man fulfilled all of the clinical and legal requirements to be suitable to donate, the question then arises with regard to the impact of terminal comfort measures on timing limitations required for the process of DCD. We must first go back to the core of the debate which helps us to reconcile these competing values. There is the right of individuals to choose death with dignity when suffering which must be balanced against the need to uphold the inalienable right to life of every person. In Queensland, unlike most Australian jurisdictions, criminal law is codified. Euthanasia is unlawful to the extent that it constitutes killing under the criminal code.26 It does not, however, constitute a crime to remove medical treatment in the face of futility – “An omission to act would nonetheless be culpable if there was a duty to act. There is no duty to treat if treatment is not in the best interests of the patient”.19 The Collins English Dictionary defines futility as: “lack of effectiveness or success, lack of purpose or meaning”.27 In reality the
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determination of futility as it pertains to withdrawal of treatment in most medical patients operates in relation to both a subjective and objective assessment of possible outcomes. In our case futility, was established subjectively by extensive communication with a competent patient who had expressed the view that further treatment, “lacked purpose or meaning” as well as lacking “effectiveness or success.” This subjective determination by the patient was congruent with the professional opinion of two intensivists, two neurosurgeons, and a radiologist who were of the unanimous view that survival in the absence of long term, chronic ventilation would be impossible. Under these circumstances removal of life support, for this patient, does not constitute euthanasia. It must therefore follow the consequent medical measures associated with the comfort of the dying patient, once futility is established it cannot also constitute euthanasia. We argue if the patient can determine, competently and legally, that futile therapy be removed they have the right to be afforded the appropriate comfort measures for the dying process. This issue becomes how much comfort? In particular, does the impost of a time frame associated with DCD affect the principles of providing pharmacologic agents for comfort measures where the pharmacologic agents themselves could potentially hasten death? The ANZICS guidelines outline that circulatory arrest should occur within 60–90 min of treatment withdrawal for the patient to be suitable to continue with DCD.25 The guideline notes that the most influential factor to circulatory arrest is whether the patient will breath independently and effectively when life support is removed.25 In the case of our patient with a pathology involving a high quadriplegia, the patient would be unable to initiate any effectual independent breaths after life support was removed, regardless of pharmacological agents administered for comfort measures. In our case, as we have outlined above, the pathology was such that irrespective of what, if any, agents were used for comfort, death was inevitable upon removal of life support within a matter of minutes. As a matter of principle the question then arises, where-in how much comfort is for the patient’s death and how much is to achieve the death within the timeframe to allow for the donation? In the case we describe here, the pathology was such that time of death was not determined by either the type or indeed dose of comfort agents used. However, we do believe that the potential difficulties may exist regarding a time frame as determined by legislation placed upon the death process. We also believe these difficulties can be reconciled by a two-step process: 1. Fulfilling the ethical requirements regarding withdrawal of life supportive therapy. When they are fulfilled – and only then – the ethical requirements in relation to donation must be considered because these will guide this aspect of the patient’s care. 2. Considering the patient’s wishes in the circumstances that life sustaining measures are withdrawn. This is a larger issue than merely the comfort process and all patient needs should be considered, including their wishes as to how, and in what manner, withdrawal occurs as well as how important it is to that that they donate their organs. In our case the patient expressed that, because survival as he wanted it was not possible, he did not wish to live and requested that supportive therapy be withdrawn. He recognised that withdrawal of supportive therapy would result in death and when this occurred he wished to donate his organs. This means, he requested for the timing of his death to be within the period proscribed by the legislation; this was also congruent with his pathology. A more difficult question arises in circumstances where the pathology is not the time limiting factor, as it was in the case we describe here. For example, should a patient view their treatment as being futile and request receipt of palliative care (including
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pharmacologic agents to promote comfort), it is possible that this management might arguably hasten death thus allowing the patient to fulfil his/her wishes for donation. In such a case it could be argued that administering the pharmacologic agents to provide comfort measures did NOT hasten their death because the patient had competently determined the withdrawal of therapy and consented to the degree of comfort they required during the dying process. This includes their determination that they wanted their death to be in a manner compatible with organ donation. Such a process is compatible with the ethical principles for terminal care in the ICU. 4. Conclusion In this paper we have described a complex moral, ethical and legal case of a patient with a high cervical spine injury and resultant quadriplegia who would be ventilator dependent for the rest of his life. The process through which the patient and family’s wishes could be respected and enacted within an ethical and legal framework is described. The process of shared clinical decision making to enact the patient’s wishes was challenging for the patient, his families and health care providers. This case has highlighted many important moral, ethical and legal issues which we were unable to fully explore in this paper. By systematically working through legal and ethical principles relative to this case we have provided an example of a legally and ethically sound approach to end-of-life care that enabled the patient to die in a manner that was acceptable to him. Authors’ contributions All authors contributed to case study conception, drafting and revising the manuscript. All authors have approved the final version of manuscript. References 1. Hall EB. The friends of Voltaire. Smith & Elder Company; 1906. 2. Gostin LO, editor. Public health law and ethics. New York: University of California Press/The Milbank Memorial Fund; 2002. 3. Corey G, Schneider Corey M, Corey C, Callanan P. Issues and ethics in the helping professions. 9th ed. United States: Cengage Learning; 2014. 4. Kalvemark S, Hoglund AT, Hansson MG, Westerholm P, Arnetz B. Living with conflicts – ethical dilemmas and moral distress in the health care system. Soc Sci Med 2004;58:1075–80. 5. Jameton A. Nursing practice: the ethical issues. Upper Saddle River, NJ: Prentice Hall; 1984. 6. Repenshek M. Moral distress: inability to act or discomfort with moral subjectivity? Nurs Ethics 2009;16:734–42. 7. Elpern E. Moral distress of staff nurses in a medical intensive care unit. Am J Crit Care 2005;14:523–30. 8. Sprung CL, Truog RD, Curtis JR, Joynt GM, Baras M, Michalsen A, et al. Seeking worldwide professional consensus on the principles of end-of-life care for the critically ill. The consensus for Worldwide End-of-Life Practice for Patients in Intensive Care Units (WELPICUS) study. Am J Resp Crit Care Med 2014;190(8):855–66. 9. Will JF. A brief historical and theoretical perspective on patient autonomy and medical decision making: Part II: The autonomy model. Chest 2011;139(June (6)):1491–7. 10. Re B (adult: refusal of medical treatment). All ER 499, 472; 2002. 11. Re T (adult: refusal of medical treatment). All ER 649; 1992. 12. Marlette v Shulman: Adult refusal of medical treatment. 67 DLR (4th) 321.3; 1990. 13. Re C (adult: refusal of medical treatment). All ER 819; 1994. 14. White B, Willmott L, Cartwright C, Parker MH, Williams G. Doctors’ knowledge of the law on withholding and withdrawing life-sustaining medical treatment. Med J Aust 2014;201(4):229–32. 15. Hunter and New England Area Health Service v A (2009) 74 NSWLR 88: [40]. 16. Barton Jr CD, Mallik HS, Orr WB, Janofsky JS. Clinicians’ judgement of capacity of nursing home patients to give informed consent. Psychiatr Serv 1996;47(9):956–60. 17. Sessums LL, Zembrzuska H, Jackson JL. Does this patient have medical decisionmaking capacity? JAMA 2011;306(4):420–7. 18. Re JS. NSWSC302; 2014.
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19. Airedale N.H.S. Trust v Bland. AC 789 House of Lords; 1993. 20. Kompanje EJ, van der Hoven B, Bakker J. Anticipation of distress after discontinuation of mechanical ventilation in the ICU at the end of life. Intensive Care Med 2008;34(9):1593–9. 21. Lo B, Rubenfeld G. Palliative sedation in dying patients: “We turn to it when everything else hasn’t worked”. JAMA 2005;294(October (14)): 1810–6. 22. ten Have H, Welie JV. Palliative sedation versus euthanasia: an ethical assessment. J Pain Symptom Manage 2014;47(1):123–36.
23. Jansen LA, Sulmasy DP. Proportionality, terminal suffering and the restorative goals of medicine. Theor Med Bioeth 2002;23(4–5):321–37. 24. Australian Government Organ and Tissue Authority. National protocol for donation after cardiac death. National Health & Medical Research Council; 2010. 25. Australian and New Zealand Intensive Care Society. The ANZICS statement on death and organ donation. 3.2 ed. Melbourne: ANZICS; 2013. 26. Criminal code Act (1899). 27. Collins English Dictionary – Complete and unabridged 2003 [09.01.15]. Available from: http://www.thefreedictionary.com/futility