Supreme Court New South Wales

• Medium Neutral Citation: Re JS [2014] NSWSC 302
• Hearing dates: 4 March 2014
• Decision date: 04 March 2014
• Jurisdiction: Common Law
• Before: Darke J

Decision

Declaration that medical practitioners and staff at John Hunter Hospital with responsibility for care of JS would be acting lawfully if they act in accordance with a request made by JS that he be disconnected from the mechanical ventilation currently in place, provided that such request is not withdrawn or modified by JS.

• Catchwords: HEALTH LAW - patient treatment - request to cease life-sustaining treatment - validity of request
• Legislation Cited: Crimes Act 1900 (NSW)
• Cases Cited: Brightwater Care Group Incorporated v Rossiter [2009] WASC 229; Hunter and New England Area Health Service v A (2009) 74 NSWLR 88; Secretary, Department of Health v JWB and SMB (1992) 175 CLR 218; X v Sydney Children Hospital's Network [2013] NSWCA 320
• Category: Principal judgment
• Parties: Hunter New England Local Health District (plaintiff); JS (defendant)
• Representation: Counsel: Mr S A Woods (plaintiff); Ms L O'Shannessy and Ms B Lyons (NSW Ministry of Health) (plaintiff)
• File Number(s): 2014/65851
• Publication restriction: N/A

Judgment - EX TEMPORE (REVISED)

 

1 The plaintiff, Hunter New England Local Health District, is the operator of the John Hunter Hospital in Newcastle ("the hospital").

 

2 The defendant, JS, is a patient of the hospital. He has been a patient there for a considerable period. JS is now 27 years of age. Since the age of seven, he has been a quadriplegic, and is presently receiving a variety of medical services from the plaintiff, including what may be generally described as life sustaining treatment. In the absence of that treatment, which includes artificial ventilation, JS will almost certainly die.

 

3 JS has decided that he no longer wants to receive that life sustaining treatment and has expressed a wish that it cease tomorrow, on his twenty-eighth birthday. He has provided a signed request to that effect.

 

4 The plaintiff, by a Summons filed on 3 March 2014, seeks declaratory relief concerning the position thereby faced by it and the individual medical practitioners and staff through whom it provides medical services to JS at the hospital. A declaration is sought to the effect that the responsible medical practitioners may lawfully discontinue all life sustaining treatment and medical support measures for JS including by the withdrawal of ventilation.

 

5 A further declaration is sought to the effect that the medical services to be provided at the hospital to JS be limited to services ancillary to the discontinuance of all life sustaining treatment, and medical support measures and palliative measures aimed at providing JS with comfort, pain relief and relief of anxiety or torment.

 

6 The legal principles applicable in situations such as this were discussed and stated by McDougall J in Hunter and New England Area Health Service v A (2009) 74 NSWLR 88; [2009] NSWSC 761 ("Hunter"). It is clear that whilst the common law recognises two sometimes conflicting interests, namely: (a) a competent adult's right of autonomy or self determination, or the right to control his or her own body; and (b) the interest of the State in protecting and preserving the lives and health of its citizens, it is generally the case that whenever there is a conflict between a capable adult's exercise of the right to self determination and the State's interest in preserving life, the right of the individual must prevail (see Hunter at [5] to [18]). The suggested exception to that principle, referred to by McDougall J in Hunter at [19], is not applicable in the present case.

 

7 There is a rebuttable presumption that an adult has the capacity to consent to or refuse medical treatment (see Hunter at [23]). An apparent consent may be vitiated for a number of reasons including lack of competence or the presence of undue influence. In this context, McDougall J expressed the view in Hunter (at [28] - [30]), that he did not accept the proposition that, in general, a competent adult's clearly expressed advance refusal of specified medical procedures or treatment should be held to be ineffective simply because the person was not given adequate information as to the benefits of the procedure or treatment and the dangers consequent upon the refusal of such. His Honour stated at [28]:

 

"As I have said, a valid refusal may be based upon religious, social or moral grounds or indeed upon no apparent rational grounds; and it is entitled to respect (assuming of course that it is given freely, by a competent adult) regardless. But more fundamentally, the concept of informed refusal seems to me to involve some degree of confusion."

 

8 His Honour continued at [30]:

 

"The reason for obtaining consent to treatment is to justify in law what would otherwise be a battery ... . A consent that is based on misleading information is clearly of no value; and a consent based on insufficient information is not much better. But once it is accepted that religious, social or moral convictions may be of themselves an adequate basis for a decision to refuse consent to medical treatment, it is clear that there is no reason that a decision made on the basis of such values must have taken into account the risks that may follow if a medical practitioner respects and acts upon that decision. This is so a fortiori where there is no discernible rational basis for the decision. No question arises of justifying what would otherwise be unlawful, and factors to be taken into account in determining whether something is or is not unlawful do not have application by analogy."

 

9 I am content to follow the approach thus taken by McDougall J, although I note that in Brightwater Care Group (Inc) v Rossiter [2009] WASC 229 ("Brightwater"), Martin CJ cast doubt on that view, at least in circumstances where it was feasible for the patient to be given, prior to the making of the decision, full information as to the consequences of a decision to discontinue treatment. His Honour considered that, in those circumstances, medical practitioners should be under a legal obligation to provide such information (see Brightwater at [30]). However, there is no reason to think that, in the present case, JS has not been given adequate information about the benefits of the life sustaining treatment and what will happen if the treatment is withdrawn, consequent upon a decision to refuse it.

 

10 It is a corollary of the abovementioned principles that, save for emergency situations, a medical practitioner who provides treatment contrary to the wishes of a mentally competent adult patient acts unlawfully (see Secretary, Department of Health and Community Services v JWB and SMB "Marion's case" (1992) 175 CLR 218 at 309 - 310 per McHugh J; [1992] HCA 15; see also Hunter at [30] and Brightwater at [31]). Of course, if there is a real doubt as to the validity or effectiveness of a refusal of medical treatment, it is open to the providers of health services to approach the Court to seek appropriate relief. That is particularly the case where the withdrawal of treatment would bring about the death of the patient.

 

11 The evidence in support of the relief claimed consists of affidavits sworn on 3 March 2014 by Ms Blaise Lyons and by Mr Anthony Deegan. Ms Lyons is a solicitor employed by the Ministry of Health. She has the conduct of this matter. Mr Deegan is a partner of Sparke Helmore Solicitors, who has also assisted the plaintiff in this matter.

 

12 It is necessary to briefly describe JS' present condition as it appears from the evidence, in particular from the report of Professor Peter Wark dated 26 February 2014, and the reports of Dr Sue Rutkowski dated 3 February 2012 and 28 February 2014.

 

13 In Professor Wark's report, he notes that JS suffers quadriplegia at the C2-3 level and has suffered this since the age of seven. He notes that since the injury, JS has required full invasive ventilator support via a tracheotomy. From 2005 to 2013 the ventilation was stable such that JS was able to remain an outpatient. However, in March 2013, JS was admitted to the intensive care unit of the hospital with ventilator associated pneumonia and collapse of the left lung. He required a larger tracheotomy. The left lung has failed to expand ever since.

 

14 JS was readmitted to the hospital in May 2013. There were increasing episodes of autonomic dysreflexia that could not be controlled despite treatment as an outpatient. These episodes were associated with extreme respiratory distress. He was again admitted to the intensive care unit and ventilation was thereby stabilised. He was subsequently transferred to another ward in the hospital and has remained there with the assistance of full time carers.

 

15 In January 2014, a review by Dr Gale suggested the addition of a low dose beta-blocker. Opinions were also sought from the Royal North Shore Spinal Unit, and the possibility of a nerve block was discussed. The consensus was that this was unlikely to be successful. It was felt, according to Professor Wark, that all realistic options to control the dysreflexia were being applied.

 

16 In February 2014, JS was discharged from the hospital with a detailed plan for control of his dysreflexia. He managed for only seven days in the community, with a breakdown of his pressure areas requiring antibiotics, surgical debridement and reapplication of dressings. Professor Wark concludes his assessment by noting that:

 

(a) JS now suffers from an escalating combination of chronic medical conditions including autonomic dysreflexia that requires intermittent and regular administration that is not feasible in a community setting;

 

(b) JS' pulmonary condition has deteriorated, and there is a likelihood of acute respiratory failure; and

 

(c) JS now faces recurring urinary infections and renal calculi with an increased frequency.

 

17 Professor Wark concludes that despite comprehensive ongoing hospital inpatient care, JS' health is slowly deteriorating. He states the further opinion that there is a consensus amongst the medical professionals that all reasonable treatment avenues have been implemented. In that respect, note should also be taken of Dr Rutkowski's report of 28 February 2014. Dr Rutkowski suggested a trial of certain medication which might relieve the problems of autonomic dysreflexia although in the doctor's opinion such relief was unlikely. JS apparently declined to undertake such a trial and thereafter there was a discussion between Dr Rutkowski and JS concerning his right to refuse treatment including the use of artificial ventilation. JS expressed the wish to Dr Rutkowski that any further artificial ventilation treatment should cease from 5 March 2014.

 

18 I mentioned earlier in these reasons the rebuttable presumption as to capacity. The question of capacity was further dealt with in Hunter by McDougall J at [24] and [25]. In deciding whether a person has capacity to make a particular decision, the ultimate question is whether that person suffers from some impairment or disturbance of mental functioning so as to render him or her incapable of making the decision. That will occur if the person is unable to comprehend and retain the information which is material to the decision, in particular as to the consequences of the decision, or is unable to use and weigh the information as part of the process of making the decision (see Hunter at [25]).

 

19 The evidence establishes that at least since the March 2013 episode, JS has openly discussed with some family members and medical staff the possibility of withdrawal of life sustaining treatment and in particular the mechanical ventilation. JS was the author of a document on that subject. The document, which is dated 3 September 2013, contains the following:

 

"To my doctors, nurses and staff and all the people caring for me. I am writing this letter to address a very difficult and upsetting topic which I have thought about for many months now.

 

As you know, over the past two years, my body has begun to deteriorate rapidly and because of this I have also begun losing my quality of life. There have always been difficulties and compromises that I have met, but now that degeneration is outpacing the counter measures, which is why I have spent the last three months in hospital. It is because of this that I have come to the conclusion that I want to explore the legal options of withdrawal of life-sustaining therapy."

 

20 The document concluded with these words:

 

"In conclusion, let me be absolutely clear, it is my wish that the life sustaining mechanical ventilation which has kept me alive for the last nineteen years be ceased soon at an agreed time and place. Please give me the control over the care that I receive that every other patient is afforded, and I know is my right."

 

21 There is a considerable body of evidence relevant to the question of JS' capacity. I refer in this regard to the report of Professor Marina Vamos (psychiatrist), dated 27 February 2014; the report of Professor Michael Hensley (Director of Medical Services at the hospital), dated 28 February 2014; the report of Professor Bryan Kelly (psychiatrist), dated 28 February 2014 and the report earlier mentioned of Dr Sue Rutkowski, dated 28 February 2014. It is not necessary to set out the detail of that evidence. It is sufficient to note that it establishes to my satisfaction that JS is not suffering from any impairment or disturbance which makes him incapable of making the decision. Indeed, the evidence indicates that JS has approached the decision in a deliberate and apparently rational fashion.

 

22 The abovementioned evidence needs to be read together with what is contained in Mr Deegan's affidavit concerning the events of yesterday. Mr Deegan deposes that yesterday afternoon he met with JS at the hospital in the presence of Professor Hensley, Dr Rowley and Professor Duggan. On that occasion, Mr Deegan showed JS a copy of the plaintiff's Summons in these proceedings and the affidavit sworn by Ms Lyons. Mr Deegan asked whether JS would like an explanation of the Summons and the affidavit and JS accepted that invitation. Mr Deegan went through the documents with JS and it appears that JS read at least parts of the affidavit of Ms Lyons.

 

23 JS was then asked whether the statement contained in the document dated 3 September 2013 still represented his beliefs and wishes. JS said "yes, it does". JS then read and signed a letter dated 3 March 2014, which was directed to "my doctors, nurses and staff and all the people caring for me", and confirmed that the statement contained in the 3 September 2013 document still reflected JS' feelings and wishes. The document further confirmed that JS had read the Summons and the supporting affidavit and that JS consented to the declarations sought. The document was signed by JS using a pen held in his mouth whilst the letter was held up towards his face to assist him.

 

24 During the same meeting, JS discussed with Mr Deegan a Request/ Consent for Medical Procedure form. Such a form was signed by JS in the manner just described. This form concerned palliative care in relation to the consequences of cessation of the mechanical ventilation.

 

25 JS also signed a further letter dated 3 March 2014 which contains the following:

 

"I, JS, wish my doctors to disconnect me from mechanical ventilation as I no longer want this treatment even though I understand that I will probably die as a result of the cessation of the mechanical ventilator support.

 

I consent to my doctors supporting me with medication, including sedating medication, as appropriate to prevent and/or treat distress and pain associated with the cessation of mechanical support. I understand that this support will not hasten my death. As the medications that may be used have been administered to me previously, there are no anticipated side effects from the medication."

26 Mr Deegan's affidavit then describes a further conversation concerning the topic of organ donation, in which JS indicated that he wanted to make his body available for organ donations. The question whether such donations might involve a delay in proceeding with the proposed cessation of the treatment was discussed. JS said words to the following effect:

 

"Whilst my current condition has become intolerable, I would be prepared to wait another day or so if that was necessary in order for organ donations to be made. In that regard, I have made arrangements assuming my life will end about 5 March 2014, and I would not want any delay required for organ donations to invalidate any Court Orders that may be made as sought by the Local Health District. My team of carers have been paid up to 5 March 2014 and the Local Health District and John Hunter Hospital would have to be prepared to take over my care if organ donations required a delay of a day or so. "

 

27 Professor Hensley in response told JS that the hospital has made a commitment to his ongoing care so that JS should not feel any need not to make an order of organ donation for that reason. JS then confirmed that in those circumstances he would be prepared to have the proposed cessation of treatment delayed a day or so if required to enable organ donations. JS was then left alone with Mr Deegan to further discuss the issues.

 

28 In total, Mr Deegan spent approximately 90 minutes in the presence of JS yesterday afternoon. According to Mr Deegan, JS was very alert and communicative, and appeared to clearly understand the matters he was discussing.

 

29 The totality of the evidence concerning capacity leaves me in no doubt that JS had the capacity to make the decision he made yesterday, including the request that the mechanical ventilation be disconnected. The evidence demonstrates that, as part of his decision making process, JS was able to (and did) weigh up the information he had.

 

30 Moreover, as mentioned earlier, JS appears to have been given adequate information about the life sustaining treatments and about what would happen to him if such treatment was withdrawn. He appears to be well aware of the consequences of his request being respected. He has given a consent to what may be described as palliative care to be given to provide some relief from those consequences. The evidence shows that JS approached the information with rationality. The decision he reached was not arrived at quickly. Rather, the decision has been in the making for the better part of the last twelve months. It is a decision which he was entitled to make.

 

31 There is also nothing in the evidence to suggest that JS' request for the withdrawal of ventilation is vitiated by any undue influence or pressure. In particular there is nothing in the discussion about organ donation which indicates any such pressure.

 

32 I conclude that JS had the capacity to make a decision to refuse the continuation of the mechanical ventilation, and that JS' decision in that regard was freely given and based on adequate information.

 

33 In these circumstances, it seems to me that provided JS' request is not revoked by him or modified by him, the medical practitioners and staff at the hospital with responsibility for his care would be acting lawfully if they act in accordance with JS' request that he be disconnected from the mechanical ventilation, which currently sustains his life. I propose to make a declaration to that effect.

 

34 Before doing so, I should note that I was referred to various provisions of the Crimes Act 1900 (NSW) which, it was said, could have some relevance. In the light of my conclusions about JS' capacity and the validity of his decision, I cannot see that any of these provisions could have any application. In particular, reference was made to s 31C of the Crimes Act which concerns aiding and abetting the suicide or attempted suicide of another person. As stated by Basten JA in X v The Sydney Children's Hospitals Network [2013] NSWCA 320 at 59:

 

"The legal concept of suicide, being the intentional taking of one's own life, is not engaged in a case where medical assistance is refused, even in the knowledge of certain death."

 

35 I should also note that I decline to make a declaration to the effect of prayer 2 in the Summons. It seems to me that such a declaration, insofar as it would effectively prescribe the limits of JS' future care, is not appropriate.

 

36 For these reasons, the Court will make the following order:

Declare that the medical practitioners and staff of the John Hunter Hospital with responsibility for the care of the defendant, JS, would be acting lawfully if they act in accordance with the request made by JS on 3 March 2014 that he be disconnected from the mechanical ventilation currently in place, provided that such request is not withdrawn or modified by JS.

 

 

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Amendments

19 March 2019 - coversheet, paragraphs [9] and [10] - changed 'Bridgewater' to 'Brightwater'

Decision last updated: 19 March 2019