Rapid Responses to:
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Rapid Responses: Rapid Responses published:
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Essential to have pro-choice living wills
- Michael H.K. Irwin (7 August 2004)
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Why should the state pay?
- David Bihari (7 August 2004)
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Bedside ethics: who should decide?
- Thalia A. Arawi (8 August 2004)
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Who decides?
- R S KUMAR BHAMIDIMARRI (8 August 2004)
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Dialysis on demand while judges play God
- Nigel Dudley (9 August 2004)
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media coverage
- john mm rumbold (10 August 2004)
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Man wins battle to keep receiving life support
- Rosemarie Anthony-Pillai (11 August 2004)
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Law is an ass
- Arun M Gordhandas (12 August 2004)
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Is tube feeding medical therapy or a basic human necessity?
- Peter KK Au-Yeung (17 August 2004)
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Misguided judgement on artificial hydration may lead to a cruel end.
- Fiona Haas (24 August 2004)
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Is it medicine to withold nutrition and hydration?
- Emmanuel J. Gonzalez Lopez de Lemus (8 October 2004)
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Michael H.K. Irwin, Retired GP Hove, BN3 3EH
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Editor - Leslie Burke's High Court case (1) shows how necessary it is today to develop extensively the concept of the pro-choice living will. In the past, the typical living will (also known as an advance directive, an advance refusal, or an advance statement) only allowed patients to refuse medical interventions or treatments which were aimed at prolonging or sustaining life. And, then, opponents of such living wills could condemn these documents as "suicidally motivated refusals of medical treatment". In 1999, when being interviewed by Clare Dyer, for the BMJ, I stated that "Of course (a living will) could be written to state that one wants to stay alive with life-prolonging measures for as long as possible". (2) Recently, Friends At The End (3) produced a pro-choice living will which can be used equally well by those who traditionally have not wanted life-prolonging care as well as by those individuals, like Leslie Burke, who want medical treatment to be given to prolong their lives for as long as possible. I believe all medical and nursing personnel should make a living will, setting an example for others to follow, because this could be of great value someday to their personal doctors, family and friends. Michael Irwin Member of Council, Friends At The End Former Chairman, Voluntary Euthanasia Society (England and Wales) (1) Dyer O. Man wins battle to keep receiving life support. BMJ 2004;329:309 (7 August) (2) Dyer C. Euthanasia campaigner to stand in by-election. BMJ 1999:319:1154 (30 October) (3) Friends At The End, 11 Westbourne Gardens, Glasgow G12 9XD Competing interests: None declared |
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David Bihari, Intensive Care Physician Prince of Wales and Lismore Base Hospital, New South Wales NSW 2031
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What is going on here? Given the overall lack of resources for education and health care in our communities, I cannot see why the taxpayer should fund care that has been deemed to be medically futile! Whilst we can argue about the definition of futility, it is not the individual's right to demand state funded treatment that is associated with a "poor outcome". If an individual wishes to receive such futile medical treatment then they must meet the cost themselves and pay for it privately. Competing interests: None declared |
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Thalia A. Arawi, Chairperson, Dept. of Philosophy IC/ 11-0236
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With the case of Leslie Burke i we are taken back, although perhaps indirectly, to the days where paternalism was part of everyday medicine. Mr. Burke’s objection to the clauses in the GMC guidance that allow the withdrawal of artificial nutrition or hydration from patients, if physicians concluded that the quality of life of the patient was very poor, leaves the burden of proof on the shoulders of the physician and on his/her professional conscience. It takes us back to a time when it was believed the physician knows better, even about things as personal as what constitute the quality of life of the patient (an issue that is quite complex and even subjective). The existence of a living will stating the desire to continue life support is in line with modern day biomedical ethics with its emphasis on autonomy and the right to self determination: If the patient is competent then his/her wishes should be respected.. However, one cannot ignore the fact that this is a case where more than one principle of medical ethics comes to the surface and perhaps conflict. If treatment or medical intervention in the form of artificial nutrition or hydration is “futile” should it be carried out particularly when carrying it out might trespass on the rights of others to a much needed hospital bed or when tax money should be spent on what one might consider as more stringent and successful health plans? But the question remains: What constitutes stringent health care plans? Curing AIDS? Continuing clinical trials in an attempt at treating Lupus or sickle cell anemia? Working on germ-line gene therapy and altering future generations -and, perhaps, depriving them from the right to make an autonomous choice about their health, looks and perhaps character? One might wish to add that tax money is being spent in different places, a great number of which the tax payer does not approve off. Burke’s statement cannot but resonate: “further down the line, I won't be able to communicate my wishes either way, and this [artificial nutrition or hydration] could just be withdrawn without my consent. In a civilized society, it can't be right to allow vulnerable people to effectively starve to death." Is it right to allow anyone to starve to begin with? Competing interests: None declared |
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R S KUMAR BHAMIDIMARRI, SHO MEDICINE WANSBECK GENERAL HOSPITAL, NE63 9JJ
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Very interesting situation! But who decides for a patient who can't communicate due to illness specially when he or she hasn't got a court order for decision on life support? In this day-in-age where NHS is getting "modernised", I am not sure how the system is going to come up with solutions for such problems? Competing interests: None declared |
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Nigel Dudley, Consultant in Elderly Medicine St James's University Hospital LEEDS LS9 7TF
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Just suppose that Leslie Burke develops renal failure or even heart failure secondary to severe aortic stenosis in the future rather than swallowing problems that require placement of a feeding tube to sustain his life.[1] Mr Justice Mumby has indicated that a patient has the right to die with dignity and to be protected from treatment or lack of treatment that may lead to a situation that the patient would find distressing. The legal principle proposed by Mr Justice Mumby is that "it was for the competent patient not his doctor to decide what treatment should or should not be given in order to achieve what the patient believed conduced to his dignity in order to avoid what the patient would find distressing."[2]It would seem that as well as Mr Burke being able to demand tube feeding it would also be possible for him to demand renal dialysis to keep him alive and avoid the distressing effects of renal failure or even demand a new aortic valve. If any patient could make such demands on doctors and medical services to protect life and avoid distress then have the floodgates been opened by this ruling? The ruling does seem to dramatically shift the balance between the rights of an individual and the rights of a resource limited society where it has already been established in law for some time that the Secretary of State is under no obligation to meet all demands for facilities and treatment.[3] All the Secretary of State can do is work as best as possible for the greater good with the resources made available to him. The ruling of Mr Justice Mumby should not be allowed to stand as it is. Perhaps this detailed ruling stems from Mr Mumby's involvement as the counsel working with the Official Solicitor in the case of Frenchay Healthcare NHS Trust v S when he witnessed first hand that the court and judges are equally as capable or incapable as consultants of playing God when deciding what is in a patient's best interests.[4] In that case his very valid concerns about a rushed judgment and a misdiagnosis of a permanent vegetative state were simply brushed to one side all in the best interests of the patient. S was someone who after six weeks' assessment in a specialist unit was recommended as needing more comfortable seating and an alteration in drug regime. Was S sensate or insensate? Diagnosis of the permanent vegetative state and deciding what is in someone's best interests can be difficult, even for judges.[5] [1] Dyer O. Man wins battle to keep receiving life support. BMJ 2004;329:309 [2] Regina (Burke) v General Medical Council (2004) The Times, 6 August [3] R v Secretary of State for Social Services, West Midlands Regional Health Authority and Birmingham Area Health Authority (Teaching), ex parte Hincks and others (1980) 1 BMLR 93 [4] Frenchay Healthcare NHS Trust v S [1994] 2 All ER 403 [5] Andrews K, Murphy L, Munday R et al. Misdiagnosis of the vegetative state: retrospectiv study in a rehabilitation unit. BMJ 1996;313:13 - 16 Competing interests: None declared |
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john mm rumbold, n/a west midlands
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The media coverage generally omitted to say that the GMC guidance was judged to be reassuring. The impression was given that this gentleman's wishes would automatically be overridden by arrogant doctors. The judge doesn't seem to have thought thru the implications of enforcing patient's wishes for treatment not medically indicated - and surely if patients unable to communicate their wishes must be given medically futile treatment so must competent communicating patients? In short this could result in the end of evidence-based medicine as we know it. Competing interests: None declared |
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Rosemarie Anthony-Pillai, SpR Palliative Medicine Sue Ryder Care St John's Hopsice, Moggerhanger, Bedfordshire MK44 3RJ
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Editor - Some will be appalled at the recent ruling in the case of Leslie Burke against the GMC(1) and will see it as opening the floodgates to patients demanding also sorts of treatments that theoretically prolong life, but are expensive and possibly down right dangerous; undermining the specialist role of the medical professionals in making expert decisions. Unlike any other medical intervention the emotive nature of feeding and hydration means we, the doctors, may not use evidence as the basis for our clinical decisions and, as the Disability Rights Commission rightly point out, we are at risk of using personal judgements based on factors such as quality of life(1). No doubt the GMC guidelines were created in good faith but this does not take away from the fact that they do make it possible for doctors to wield excessive paternalistic power and to leave the patient feeling vulnerable as Mr Burke clearly felt himself to be. In order to prevent the floodgates opening to ludicrous demands by patients, one must consider keeping feeding and hydration in a separate category from other medical treatment, or else being careful to use the same yard sticks for how we implement feeding and hydration as for any other treatment - it is imperative that doctors are seen to make their decisions based on fact and evidence as far as possible. In spite of the paucity of data, we do have studies to show that feeding may not be helpful in cachexia – anorexia sydrome(2), and dementia(3). But we also know that feeding, in particular percutaneous endoscopic gastrostomy feeding, has a role in stroke patients(4), in spite of this studies have shown clinicians are slow in making the assessments and initiating the treatment(5). We really must have more research into the role of feeding and hydration in different disease processes; until then if there is any concern a patient is experiencing thirst and or hunger we must address this, just as we do their pain or any other symptom. Our role as doctors is to treat our patients safely and to the best of our ability be the intent curative or palliative. It is not our role to prolong dying neither is it our role to save the state the burden of long term care for someone with a severe disability, however poor one perceives that person’s quality of life to be. 1. Dyer O. Man wins battle to keep receiving life support. BMJ 2004;329:309 2. Thomas DR. Distinguishing starvation from cachexia. Clin Geriatr. Med 2002 Nov; 18(4): 883-91 3. Sanders DS, Alan JA, Bardhan KD. Percutaneous endoscopic gastrostomy: an effective strategy for gastrostomy feeding in patients with dementia. Clin Med. 2004 May/Jun; 4(3):235-41 4. Bath PM, Bath FJ, Smithard DG. Interventions for dysphagia in acute stroke. Cochrane Database Syst Rev. 2000;(2):CD000323 5. Rodrigue N, Cote R, Kirsch C, Germain C, Coutier C, Fraser R. Meeting the nutritional needs of patients with severe dysphagia following a stroke: an interdisciplinary approach. Axone 2002 Mar; 23(3): 31-7 Competing interests: None declared |
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Arun M Gordhandas, Retired GP; Occasional Locum DN16 2SZ
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Bert Massie, chairman of the Disability Rights Commission, is being extravagantly emotive when he said “……doctors [have a] set of assumptions that disability equals a very poor quality of life.” He does not seem to differentiate between chronic disability with which many lead a very useful productive life and the end stage disability which affects every human being before he meets his end. This end stage disability may last from few hours to few months/years depending upon the acuteness of the condition. All these patients could be on a life prolonging treatment. Withdrawing life prolonging treatment applies to all these who have reached the end stage; whether from a chronic debilitating illness or from an acute episode in a previously healthy individual. If a patient is mentally fit enough to communicate his wishes, either by words or gestures or even blinking (vide Count of Monte Cristo) then no doctor would ever consider withdrawing treatment. It is only when a patient is so disabled mentally that doctors have to make this judgement. This legal judgment means that every patient suffering from senile dementia, or Alzheimer’s disease would need life prolonging with antibiotics and artificial feeding unless a living will has been made or the relatives give their consent. What happens if there are no relatives? A doctor dares not stop life prolonging treatment in such a patient in case some whistle blower informs on him. What happens if the relatives do not want to take that responsibility? One cannot blame them if they do not want to make a life and death decision when they are emotionally involved. There has to be an objective, non-emotional assessment of the situation. Only person who can provide it is the doctor in charge. By all means let the decision be made by that individual seconded by an independent panel. But to get permission from the court is too ridiculous for words. Why is it taken for granted that legal decisions are always objective and free of bias? Expert witnesses can sway the court in their chosen direction as has been proven number of times. Mr Burke could have made a living will and could have appointed a relative who would have seen that his living will was adhered to when the time came. It is a pity that the Disability Right Commission got involved and tried to make a universal principle out of this one individual case. It seems that legal profession is the only one which does not realise that hard cases make bad law. Competing interests: None declared |
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Peter KK Au-Yeung, Specialist Anaesthetist Hong Kong
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This appeared to be a case of a man not wishing to be starved and dehydrated to death, whatever his quality of life. If tube feeding and hydration is medical therapy, then tests such as "ordinary" and "extra- ordinary" means, medical futility or quality of life would be relevant. But if tube feeding is part of basic care, then it is the duty of any carer to provide it, and tests of futility do not apply. After all, if a patient could still swallow, no one would yet countenance asking a carer not to spoon-feed him/her whatever his/her quality of life. The Tony Bland case established a precedent which implied that tube feeding can be viewed in the same way as putting a patient on a ventilator, or giving him dialysis. This current case seemed to imply that tube feeding could be considered as a basic human necessity, not subject to tests of medical futility. Of course, if one needs to give the patient a risky general anaesthetic to put in and/or secure a tube to feed the patient, then that act is invasive medical therapy. Yet the Bland judges authorized the cessation of feeding through a functioning feeding tube, and even its removal. Rather than getting alarmed at the possibility of being forced to continue futile therapy, doctors should come together with patients and other interested stakeholders to formulate a comprehensive approach to tube feeding. If such was forthcoming, then a carefully formulated and generally acceptable approach to the whole area of hydration and nutrition would let doctors, lawyers and judges get on with the difficulties of withdrawing or withholding truly life-sustaining treatments, rather than get drawn into this emotive area which can basically be summed up as "food and drink". Competing interests: None declared |
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Fiona Haas, Nurse St Richard's Hospital, Chichester PO19 4SE
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A court order should not have been necessary to ensure that Mr Burke receives artificial nutrition and hydration as long as it will benefit him. Mr Burke clearly wants to live as long as he can, so any decision about his quality of life is not necessary. However, there will a time when continuing with artificial hydration will not help Mr Burke’s condition and will cause other problems. Unfortunately, Mr Justice Mumby’s ruling [1] leaves no room for adjustment according to the changing condition of the patient. Artificial nutrition and hydration have a place keeping a patient with swallowing difficulties alive. When a patient is dying from his disease there comes a point when further nutrition or hydration may not help and should usually be discontinued [2]. When a patient is very near death the body has little need for food and fluids. A reduction in the intake of food and water is one of the first signs of an impending death[3]. Patients who are artificially fed or hydrated are unable to reduce their intake when the body no longer requires it. The continuing administration of fluids is likely to cause aspiration pneumonia and distressing respiratory problems [4]. One of the most disturbing consequences is that secretions are increased. This causes a sense of drowning in the patient, made worse if there is a poor swallowing reflex. Suction (a plastic tube pushed down the back of the throat) can be used to remove some of the excess fluid. This may not work very well and may have to be repeated many times. Suction is not needed as frequently for dying patients who are not hydrated artificially in the last hours. I wish that some of the people who are interested in protecting the rights of disabled people would spend a some time working with nurses in hospitals so that they could see what does happen and how awful it is when a patient is given too much fluid in the last few hours. Nurses are around patients when they die and often see patient who suffer unnecessarily because of a misguided attempt to help them. Fiona Haas. Respiratory Nurse. St Richard’s Hospital, Chichester, West Sussex PO19 4SE. fionahaas@hotmail.com. References:- 1. Dyer O. Man wins battle to keep receiving life support. BMJ 2004;329:309. 2. Ellershaw J, Ward C. Care of the dying patient: the last hours or days of life. BMJ 2003;326:30-34. 3. Twycross RG, Lack SA . Dysphagia. In: Alimentary Symptom Control in Cancer. Bath: Churchill Livingstone, 1986. 4. Boyd KJ, Beeken L. Tube feeding in palliative care: benefits and problems. Palliative Medicine 1994;8:156-158. Competing interests: None declared |
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Emmanuel J. Gonzalez Lopez de Lemus, Teaching Ethics Strathmore University
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After having seen and read the article and the responses to it I find a lack of understanding between both sides of the story. Some say: why should the state pay for treatment if it is futile? The others claim that who is the judge to decide what you give or give not, playing God.
I see a very misguided idea about the futile treatment issue. Artificial nutrition and hydration is not futile treatment, because if you stop it, even if you do it to any other patient in the world, the patient would inexorably die! Our efforts to provide health care are futile if we withold nutrition and hydration. There is a professional duty to provide these basics needs. Extraordinary treatment is a different matter, but it should be the patient himself -if he can- or his kin who decide about that. It seems quite risky and unnecessary that doctors should decide about the life of his patients, if it is something that depends on a personal decision. The day judges and hospitals administration decide about the lives of people we should look at each other carefully, nobody is safe whether sick or healthy. Money is a terrible tyrant and that is what happens when you let interests decide the value of life. We should love people and use money and not viceversa. Emmanuel Gonzalez Lopez de Lemus (MD) Competing interests: None declared |
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