Rapid Responses to:
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Rapid Responses: Rapid Responses published:
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Why Run to Court of Appeal?
- Jay Ilangaratne (8 October 2004)
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Practice by default
- sheila otto (8 October 2004)
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Inaccuracies
- Timothy James (8 October 2004)
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Burke judgement does not compel doctors to provide non-beneficial and wasteful life prolonging treatment
- Peter KK Au-Yeung (10 October 2004)
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Burke case is necessary
- Adrian Joseph Treloar (11 October 2004)
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Feeding and treatment - two different things
- Rebecca E Brain (12 October 2004)
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Withdrawal of feeding is not starvation
- Neville W Goodman (13 October 2004)
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Burke judgment is beneficial but incomplete
- M D Dominic Bell (20 October 2004)
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Why the GMC is wrong - an expert opinion
- Charles H Davis (21 October 2004)
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Medical Paternalism
- Gregory Gardner, Raglan Rd., Smethwick, West Mids B66 3NR (26 October 2004)
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Why the GMC is right (for once . . .)
- Sarah Liv Andersen (22 April 2005)
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Jay Ilangaratne, Founder Medical-Journals.com
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Mr Justice Munby’s well reasoned judgment in the Burke case[1] provides a useful commentary on the dilemmas of doctors faced with complex decisions in relation to life prolonging treatment. There is hardly any criticism of the doctors involved in the Burke case, or of the medical profession generally. In fact, everything suggests that Munby MJ fully understood the sensitive complexities in this difficult area of medical practice. Further, the passage below from the said judgment, confirms that Munby MJ was acutely aware of his legal remit when dealing with the case. “215. During the course of argument many parts of the Guidance were subjected to intensive and critical textual analysis. I do not propose to repeat the exercise. The Guidance is not a legal textbook or statement of legal principles. It consists primarily of professional and ethical guidance for doctors provided for them by the professional body which is responsible for such matters. It is not the function of a judge to comment on such matters: I am not competent to do so. My task is confined to considering those parts of the Guidance which either assert or assume identifiable propositions of legal principle. I propose to confine myself to that task, directing attention in particular to those paragraphs in the Guidance that were the primary focus of the argument before me. My task is likewise confined to identifying where (if at all) there is legal error. It is not my task to go on to advise the GMC how it should go about amending or revising the Guidance, save to direct the GMC's attention to the principles as I have sought to summarise them in paragraph [213] above. Parliament has conferred on the GMC the statutory function of providing advice for members of the medical profession "in such manner as the Council think fit" and I must be careful not to trespass upon that function. Equally I must be careful not to stray beyond the proper bounds of my task as identified by Lord Bridge of Harwich in Gillick.” As a public authority the GMC’s procedures, policies, and guidance need to be compliant with the Human Rights Act and relevant Articles of the European Convention on Human Rights. It is clear that the court’s criticism is of the GMC’s guidance but nothing else. If the court cannot point out the deficiencies of a public authority’s Guidance in relation to life or death matters, then who else could legitimately do so?. Indeed, it is clear from the above passage that the court is suggesting “amending or revising” the Guidance. Surely, that should not be an overly onerous task for the GMC. What is surprising is instead, the GMC has chosen to appeal the matter. Arguably,well informed costs-benefit assessment would have favoured a revision of Guidance rather than an expensive and uncertain route to the Court of Appeal. I wonder whether the GMC is attempting seek absolute and unrestricted clinical autonomy when it comes to life and death matters, barring any interference by the judiciary—that is unlikely to happen. References [1] Burke v GMC [2004] EWHC 1879 (Admin) http://www.bailii.org/ew/cases/EWHC/Admin/2004/1879.html (accessed 8 October 2004) Competing interests: None declared |
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sheila otto, RN ethicist Albany Medical Center 12208
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Here in NY we have a provision in our Proxy law mandating that the wishes of the incapacitated pt. be specific about artificial nutrition and hydration. This provision was included to expediate the bill and in so doing, make possible, cooperation from certain political constituencies with conservative religious beliefs. Based on twenty years experience in a tertiary care teaching hospital, I would argue that such a standard is almost impossible to achieve. While preservation of life sounds like a noble principle to uphold, the reality is that for many persons(if not the majority), the inability to interact with their environment would render a condition not worth living. Withholding of the MEDICAL TREATMENT of artificial nutrition and hydration does not cause pain and suffering. The literature is plentiful in descriptions of such a dying process. The concern of decision makers should be redirected to the burdens of continued life with tubes and bedsores and contractures etc. balanced against the 'benefit" of continued physiologic life. Whose benefit are we speaking of? It is hard to imagine the societal benefit from the artificial preservation of a life of a patient who is unaware of that benefit. Do these patients serve as a means to our end? Competing interests: None declared |
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Timothy James, Senior Lecturer University of Central England, Birmingham, B42 2SU
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Dear Sir, The electronic reference given by Professor Gillan to the Burke case is out of date. Readers who want to see what the judge said should go to http://www.courtservice.gov.uk/judgmentsfiles/j2775/burke-v-gmc.htm. Professor Gillan is also inaccurate, or at least tendentious, in suggesting that those who see virtue in Mr Justice Munby's judgment must be "vitalists". The fallacy of this suggestion is clearly shown by distinguished medico-legal scholars such as Professor Finnis (1) and Dr Keown (2) in their commentaries on the Bland case (3). These cogently demonstrate that there exists a coherent "value of life" position, which is neither crude vitalism nor a value judgment as to which lives are worth living. The context for the discussion is a widespread reaction amongst intensivists, oncologists and others against over-treatment, which led in some cases to the maintenance of biological life with no apparent benefit to the patient. If I understand his third paragraph correctly, Professor Gillan considers it outrageous, or at least inappropriate, that the decision to withdrawn feeding from patients should not be the exclusive preserve of doctors. In particular, the necessity to secure the agreement of family members appears to concern him. This is extremely topical, in the light of the recent decision of the High Court in the case of Charlotte Wyatt (4). Following a long line of precedent, the Judge ruled in favour of the medical staff and against the wishes of the parents. It has been explicitly and authoritatively stated (5) that the Courts in England and Wales consider it beyond their powers to order doctors to administer treatment against their clinical and ethical judgment. To suggest, as Professor Gillan does, that the Burke decision, if upheld, will have such a consequence is perilously close to scaremongering, and his warning should be disregarded. Yours faithfully, T.L. James References 1. “Bland: crossing the Rubicon?” Law Quarterly Review 1993, 109(Jul), 329-337 2. “Restoring moral and intellectual shape to the law after Bland” Law Quarterly Review 1997, 113(Jul), 482-503 3. Airedale NHS Trust v Bland [1993] A.C. 789 4. Portsmouth NHS Trust v Wyatt [2004] EWHC 2247 available at http://www.bailii.org/ew/cases/EWHC/Fam/2004/2247.html 5. Lord Donaldson MR in Re J. [1993] Fam 15 and Re J. [1991] Fam. 33, 41 Competing interests: None declared |
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Peter KK Au-Yeung, Specialist Anaesthetist Hong Kong
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Prof Gillon's editorial (1) did not give a fair assessment of the Burke judgement, and runs perilously close to scare-mongering as suggested by Timothy James (2). A certain frustration that "best interests" are not the exclusive reserve of doctors is detected throughout his arguments. Mr Munby's summary of the relevant case-law clearly demonstrated that the Courts did not consider that "best interests" should be left to doctors alone. (Burke case (3) , para 89-93). To make the point more forcefully, Munby gave a very reasonable illustration in paragraph 97, which as a doctor, I cannot fault. Munby also reassured doctors and others that existing case-law (para 181-187) does not allow the personal autonomy of the patient to compel them to provide "non-beneficial and wasteful ... life prolonging treatment". This is reinforced by the recent Wyatt case. The cases of Burke and Wyatt are useful in making doctors think about these difficult problems. Let us approach this task rationally, based on the arguments of the judgement rather than wildly extrapolating into areas explicitly excluded on the basis of already established legal precedents. References: (1) Gillon R Why the GMC is right to appeal over life prolonging treatment BMJ 2004; 329: 810-811 (2) James T Inaccuracies rapid response to Gillon 8 Oct 2004 (3) R (Burke) v The General Medical Council [2004] EWHC 1879 (Admin) http://www.courtservice.gov.uk/judgmentsfiles/j2775/burke-v-gmc.htm Competing interests: None declared |
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Adrian Joseph Treloar, Consultant and Senior Lecturer SE18 3RZ
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Professor Gillon’s editorial misses the point of the Burke case. Fearing that it has no effect other than to force the feeding on many patients, he fails to see what patients have been perceiving for some time. The case of Mrs Nockels [1] is an example of how families now feel forced to seek court injunctions for patients who do not appear to be receiving the care they need. BMA and GMC guidance states that it may well be in a patients “best interests” for food and fluid to be removed so that a patient dies. This is the point of Mr Burke's challenge to the guidance in the first place. When sick and unable patients find themselves up against such statements, is it any wonder that they feel they need some redress? Many will be aware of other patients who are similarly worried, and whose families have had to plead for what they see as basic treatment. Professor Gillon simply misses this reality and is therefore one sided in his analysis. The Burke case will not make all patients able to require treatment, but it does help to affirm the value and worth of each patient whom we treat. The medical profession needs to remember that it loses the trust of its sickest patients when it dismisses their fears so lightly. 1 Judge tells hospital to feed widow, 91 'left to die' By Celia Hall, Medical Editor. Daily Telegraph 7/10/2003. (Filed: 07/10/2003) Competing interests: None declared |
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Rebecca E Brain, Senior House Officer in paediatrics University Hospital of Wales, CF14 4TN
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Dr Gillon's article includes nutrition and hydration as life- prolonging treatments. This is not the case. Nutrition and hydration are not medical treatments, but a part of basic nursing care. Even when modern medicine has nothing further to offer a patient, we still owe them a duty of care, and depriving them of food and fluid violates this standard. There will be many times when it is no longer appropriate to actively treat someone, however it is inhumane to starve them. Competing interests: None declared |
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Neville W Goodman, Consultant Anaesthetist Southmead Hospital, Bristol, BS10 5NB
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Patients who are dying but mentally alert often stop eating and drinking, and are not hungry or thirsty. Withdrawal of nutrition and hydration from the dying and comatose is not a denial of a basic human right, and the word starvation and the phrase "dying of thirst" are emotively inappropriate.(1) 1 Ahronheim JC, Gasner MR. The sloganism of starvation. Lancet 1990;335:278-279. Competing interests: None |
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M D Dominic Bell, Consultant in Intensive Care The General Infirmary at Leeds
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In justifying his support for the GMC appeal, Raanan Gillon defines the judgment of Mr Justice Munby as a ‘draconian restriction’, at which all parties should be ‘appalled’ [1]. It can be argued however, that it is just such an interpretation that is likely to ‘skew medical care’ towards ‘non-beneficial and wasteful provision of life prolonging treatment’ in various forms, in multiple clinical arenas and for diverse patient cohorts, rather than the primary judgment being responsible for this effect. Critical analysis reveals that this case revolves around a singular set of patient circumstances, and a specific act of omission which sits uneasily with both fundamental ethical principles and the law which prohibits deliberate killing. The circumstances of a patient degenerating into incompetence whilst retaining awareness, sentience and therefore the ability to suffer, but unable to communicate the same, are clearly defined. The strategy under scrutiny, namely the withholding of ANH (artificial nutrition and hydration) is similarly clearly delineated. It is an unavoidable conclusion that the ultimate goal of this strategy in the usual scenario of neurological pathology, is to expedite death in circumstances where the patient would not be receiving other multi-system support which could legitimately be withheld or withdrawn, thereby foreshortening life within a shorter timeframe by other mechanisms. The moral ambiguity of defining ANH as a medical treatment, of artificially creating a distinction between act and omission, and of avoiding consideration of intent, was recognised and discussed in the sentinel forum for this debate, the case of Anthony Bland [2]. It is highly likely that consideration of these aspects and acceptance that occasioning death by starvation and dehydration can be viewed as inhumane, even for the definitively non-sentient patient, was the justification behind the recommendation that such cases should be referred to the courts. It logically follows that having legitimised this strategy for certain patients, the courts should also ensure the protection of others who may be exposed to such management inappropriately, namely incompetent patients retaining sentience, who may not receive associated explicit provision of analgesia and anxiolysis out of a paradoxical concern that this somehow be considered equivalent at law with euthanasia. Beyond this justification for considering the GMC guidance, the judgment, as a contemporaneous review, has much to offer any practitioner involved in end-of-life decision-making, regardless of whether ANH is a key deliberation. The principles of medical law are comprehensively set out with ‘capacity’, ‘competence’, ‘duty-of-care’, and ‘best interests’, lucidly defined. The concept of ‘intolerability’, which is established and referenced in case law, is a valuable threshold when considering the burdens of intervention, and is clearly placed in the context of a ‘welfare appraisal’. The distinction between the ‘incurable’, the ‘terminally-ill and the ‘dying’ is helpful when legitimising certain treatment strategies. Of particular importance is the emphasis on the purpose of treatment as facilitating recovery rather than simply prolonging life, the stance that a ‘right-to-life’ is not overriding, and that Article 3 of the Human Rights Act embraces the ‘right to die with dignity’. The judgment of Justice Munby does not appear therefore to constitute the threat that Gillon describes, or to warrant the appeal from the GMC. It can be argued that the efforts of all parties could be focused instead on the key issue of this case, namely the rationale for and purpose of withholding ANH in the context of palliative care provision. Few scenarios can be considered to be a purely medical issue with no broader ethico-legal considerations, namely the patient with ‘incurable’ pathology, where attempts at enteric ANH generate suffering through distension and vomiting due to untreatable and sustained gut dysfunction. Here ANH clearly crosses the ‘intolerability’ threshold and can legitimately be withheld. If however ANH is tolerated, but serves to prolong a life characterised by suffering through other mechanisms, it would be unethical to potentially compound that suffering by deliberate withdrawal, the impact of which was impossible to assess. Such a patient warrants explicit provision of analgesia and anxiolysis free from any connotation of euthanasia, even though such a strategy would predictably foreshorten life. If ANH is tolerated, but prolongs a life devoid of awareness as in PVS (persistent vegetative state), the broader society needs to be engaged as well as the profession and legislature to objectively discuss whether legitimisation of withdrawal of ANH through the courts constitutes an ethically acceptable alternative to more explicit methods of foreshortening life through analgesic and sedative regimens. It is curious therefore that no reference was made during this case to the proposed Assisted Dying for the Terminally Ill Bill [HL] [3]. It remains possible that Leslie Burke’s fear of suffering would not have translated into a court case if he could have been sure of explicit comfort care at the end of life, rather than be subjected to a strategy arguably unethical and inhumane, employed by doctors seeking disingenuously to remain within the current law prohibiting killing. In conclusion, this case was a focused challenge and judgment on a strategy where it can legitimately be questioned whether doctors should be the end-arbiter, particularly in circumstances where awareness and sentience cannot be objectively assessed. It is only proper that a professional guideline which attempts to act as interface between ethical abstractions and tenets of law is subjected to robust scrutiny when there is the potential for harm. If the case triggers fruitful debate on the ethico-legal considerations outlined above, the judgment may prove to be of additional longer-term benefit to all parties, rather than the threat described by Gillon. 1. Gillon R. Why the GMC is right to appeal over life prolonging treatment. BMJ 2004;329:810-11 2. Airedale NHS Trust v Bland [1993] A.C. 789 3. http://www.publications.parliament.uk Competing interests: None declared |
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Charles H Davis, Consultant Neurosurgeon Royal Preston Hospital, Sharoe Green Lane, Fulwood, Preston. PR2 9HT
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Dear Sir, WHY THE GMC IS WRONG – AN EXPERT OPINION Following the Burke v GMC Judgement earlier this year, the GMC (protecting patients) immediately decided to appeal. The leave for this Appeal was granted last week. In one fell swoop more damage was caused to the doctor/patient relationship than the Bristol scandal, by alienating our most important constituency – disabled people. I decided to seek expert opinion. Nipper an exuberant terrier met me with Mr. Leslie Burke at a modest but immaculate house with ramp and stair lift. Mr. Burke, as is well known, suffers from a progressive neurological disease diagnosed by one of my neurological colleague Dr. Sarosh Vakil who is held in very high regard by the family. Mr. Burke has had the disease for 20 years and works 15 hours a week in the voluntary sector helping other disabled people. Mr. Burke’s view is extraordinarily simple – he wants to make decisions over his health, as and when required, with the help of his family and the best medical advice. He is no fanatic and may choose not to go ahead with modern technological treatments such as the lady quadriplegic at the Royal London Hospital who demanded withdrawal of treatment or on the other hand may wish for a period of time to pursue a more aggressive course such as that chosen by the late Christopher Reeve. All Mr. Burke wants is choice and has a fear that the medical profession will undermine this choice against his express wishes. Nothing could be simpler. I then decided to explore the family history and found that Mr. Burke was one of 5 sibs. and that one of his other brothers suffers from the same condition. I asked where the brother was and was shocked to hear that he was in the room next door. His state is more advanced and has difficulty in talking, but can communicate well with the family and appears cheerful. I became immediately aware that Mr. Leslie Burke knew more about his problems than any other expert. He has lived with the disease for more than 20 years and could see the future in the room next to him. The brothers are looked after by their mother who again is an expert. The reasons given by the General Medical Council for this Appeal appears to be to ‘clarify’ 6 or 7 legal areas. Mr. Justice Munby shifted the balance of power from the medical profession to the patient – certainly this was the correct direction and he made useful other suggestions when doctors and patients fall out such as seeking a second opinion. However, the human condition cannot be clarified totally by guidance, protocols, Do Not Resuscitate orders or even judgements, except in a eugenic society. There is simply no answer for every case. Surely the patients’ judgement must be the most powerful. I believe the Appeal judges would benefit from visiting the Burke household and as I left, I became stuck in a traffic jam, usually impatient, for once, I did not complain. Yours sincerely, C. Davis, F.R.C.S.,
Competing interests: Clinical Director Neurosciences Lancashire and South Cumbria |
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Gregory Gardner, Associate General Practitioner Cape Hill Medical Centre,, Raglan Rd., Smethwick, West Mids B66 3NR
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Although it would be unkind to describe Raanan Gillon’s editorial[1] as old fashioned medical paternalism, it is equally wrong of him to jump to the conclusion that anyone who agrees with Justice Munby’s conclusions must be a ‘vitalist’. The reason why Leslie Burke went to court in the first place is simply because of his fear of being starved or dehydrated to death when he no longer has the ability to communicate his wishes. Since both the GMC and BMA guidelines support in principle the withdrawal of tube feeding even from patients who are not dying such fears are quite understandable. In the Bland judgment of 1993[2] food and fluid delivered by a tube was re-classified as a ‘treatment’. The logical question emerging from this would be 'what disease process is being treated?' The provision of food and fluids is basic nursing care and tube feeding has been used since the 19th century. Although the insertion of a PEG tube is a surgical procedure, the food and fluids delivered by that tube is not a treatment in the strict sense of the word. It is therefore incorrect of Raanan Gillon to conclude that Justice Munby’s tightly circumscribed judgment in the case of Leslie Burke would compel doctors to provide other life prolonging treatments for all legally incompetent patients. It is an irony that in the constituency that has been most enthusiastic in promoting the principle of autonomy, when a patient decides to exercise his own autonomy and expresses his wish to be fed towards the end of his life – a perfectly reasonable request - alarm bells go off all over the place. The Mental Capacity Bill is another factor which has struck a blow at trust between patients and doctors. Once trust is damaged it becomes difficult to restore. By not defining ‘best interests’ in strictly clinical terms the door is left open for the ‘best interests’ of mentally incapacitated patients to include death by starvation. The government deny any complicity with euthanasia by defining euthanasia strictly in terms of commissions, not omissions. This encroachment of euthanasia by neglect and its passive acceptance in the profession is the reason why patients like Leslie Burke feel compelled to go to court. Yours sincerely, Gregory Gardner. 1 Gillon R. Why the GMC is right to appeal over life prolonging treatment. BMJ 2004;329:810-11 2 Airedale NHS Trust v Bland [1993] 2 Weekly Law Reports 359. Competing interests: None declared |
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Sarah Liv Andersen, General Practitioner Brighton
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Amidst the maelstrom of criticism and controversy swirling around the GMC, I welcome Professor Gillon’s comments on something that at last this organisation seems to be doing right. Like him I have an interest in decision- making at the end of life. Like him I am heartened to see the GMC appealing against the judicial ruling in last summer’s case regarding Leslie Burke. The tragic case of Terry Schiavo reinforces the controversy over the withdrawal of artificial nutrition and hydration: in her case the US courts did withstand political pressure for her to be kept alive, but only just. Professor Gillon makes it strikingly clear how Mr Justice Mumby’s ruling in the case of Leslie Burke (a man who was fully aware of his degenerative disorder) might lead to ‘draconian restriction of the exercise of doctors’ professional skills’. If this ruling goes unchallenged we risk finding ourselves faced with the nightmare scenario faced by the husband of Terri Schiavo, where medical treatment cannot be withdrawn despite being in the best interests of the patient. Medical treatment at the end of life, and indeed the process of dying itself, must be discussed and debated - by the media, by the public, by doctors and other health professionals – but not at the expense of oversimplification and polarization. The late Pope John Paul described death as ‘God’s final and greatest gift’: it cannot be in a patient’s best interests for their deathbed to become a battleground. The role of artificial nutrition and hydration in the dying is frequently misconstrued by their friends and family and even by members of the medical team. Our unpublished data from 2 UK District General Hospitals suggests that the degree of open and informed discussion about the need for artificial nutrition can influence the use of percutaneous gastrostomy tubes (PEG). We found that the baseline 30 day mortality following PEG insertion (37%; n=15) fell to 12% (n=3) in the six months following the introduction of team discussions over the care of the dying. More careful selection of patients for PEG insertion may mean that fewer patients endure a treatment designed for long-term feeding when it has not been disclosed, or even discussed within the team, that they are dying. Every case is unique. If the courtroom is to become the forum for discussion of the rights of the unconscious patient then the precedents set may be dangerous. The GMC must have the power and the will to protect doctors’ rights to work with patients and their relatives to enable people to die as individually as they have lived. Competing interests: None declared |
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