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Death Wish Introduction Doctors playing God is an interesting scenario. Many doctors are convinced that science can predict everything. Recently, the debate on the withdrawal of treatment has intensified with a number of patients quite rightly challenging the medical profession. Some people believe that doctors are often given too much power. So much so that many have the confidence to believe that patients cannot recover and that death is the only alternative " in the best interests of the patient". I have often wondered how doctors can truly believe that to "die" is the best option. Afterall, no one actually knows whether death is the best option for any patient. Death is an unknown entity to all of us. The problem with science is this - it is sometimes proven wrong by patients and their relatives determined to live. Lorenzo's oil is only one example made into a Hollywood movie where the parents of a little boy fought and defeated their doctors. As a doctor, I have observed many patients cheating death after doctors have written them off. In my view, patients and relatives should have the autonomy to decide what they wish to do. After all, it is their life. There are of course circumstances in multiple organ failure where the scenario may be different. In any case, the principle decision should be taken by the patient or relatives. Doctors should act as facilitators to the wishes of the family. It is our job to ensure that the repercussion of death is as painless as possible - this includes ensuring that relatives are not traumatised through their bereavement. As doctors, our job is to save and protect life. In the modern world, with NHS resources running short and finances diverted to the protection of younger and more viable patients, are we seeing a culture where a person's life is balanced on a "best interests principle" where the use of resources is the main deciding factor? Of course, you will find that the Department of Health and the hospitals themselves will not admit to "finances" being an issue. Yet if we all observe their motivation - money seems to be the underpinning factor for many decisions. NHS Trusts and the Department of Health have a façade of "spin" where they purport to "care" for people. The stark reality is rather harsher. The NHS is now run much like a business. Finances and cost saving escapades are given far higher priority than patient care. Shortages of beds, resources and staff means cost effective protocols have to be in place even if it means emptying the bed of a patient who is not "viable". Viability is of course a subjective decision made by Trusts and NHS doctors based on their own experiences. Presentations to the public are often couched in "acceptable" phrases. The buzz word these days is "patient's best interests", a phrase that is used to obtain public approval for the decisions made on the elderly and disabled - i.e. the most vulnerable in our society. Tony Leather, our freelance writer debates some of the recent cases. The Killing Fields Are hospital doctors automatically to be granted a licence to kill? Many people feel that doctors do indeed see it that way, and it seems to terrify most people. All forms of intentional killing (aside from abortion) were illegal in the UK until 1993. The 1989 Hillsborough football disaster involved Tony Bland, who suffered horrific injuries. Four years in a so-called persistent vegetative state (PVS) had left his family convinced that he had no chance of recovery. After a lengthy legal battle, they got the House of Lords to let medical staff withdraw food and fluids from Mr Bland, who was being tube-fed. This court ruling was made after the President of the Family Division, Sir Stephen Brown, ruled that artificial feeding was medical treatment and that its withdrawal could therefore follow good medical practice. Tony Bland died of dehydration soon after the withdrawal. The horror of this is the assumption that he himself would have wanted this. Who can possibly know that, and when did the lines blur to the extent that 'good medical practitioners' became summary judges and executioners? While doctors had an obligation to provide adequate care, they did not have a duty to continue medical treatment, which was of no benefit. A court had decreed Tony's survival was of no benefit, but unfortunately the future is unknown for many patients. Indeed, there have been cases where people have recovered after being in a coma for many years. On occasion, patients do cheat death. There are grey areas where life touches death and science does not possess the answer to everything. Doctors have been proven wrong in the past. http://www.comarecovery.org/ provides some stories. The decision for Tony Bland has more or less been abused by the medical profession. It opened the door to misinterpretations and the right for a doctor to make decisions based on his or her subjective view. It is spilled onto diamorphine administration and Do Not Resuscitate orders. It has allowed doctors to let patients die. The buzz word "best interests" arose from this case and has since been used to justify end of life decisions that may or may not have been justified. This practice of withdrawing treatment is called 'euthanasia by omission', and was advocated in the Government document, 'Making Decisions'. Some cases merit the withdrawal of treatment, including assisted food and fluid, with the purpose of ending the life of the patient by dehydration and starvation. The BMA report, entitled 'Guidelines On The Withdrawal and Withholding of Life Prolong Treatment', was clearly flawed on this issue. It made no distinction between the effect of withdrawing life-support, such as ventilation, and the withdrawal of food and fluid by tube from a patient who was not dying and which could have only one result - death by dehydration and starvation. Religious communities condemned this drastic error; because it blatantly contravened the law and could leave doctors could be open to prosecution. The GMC guidelines on this issue were equally unclear, and the Bland case provoked a rash of cases involving withdrawal of treatment. A 49-year-old woman, named only as Mrs M for legal reasons, was left severely brain damaged by an anaesthetic accident during a gynaecological operation overseas in 1997. Although she responded to some stimuli, the doctors agreed that these are only reflexes and that there is no possibility of recovery. However, if feeding and hydration continued, doctors said she could live for 12 years or more. Her family wanted doctors to let her die, citing Article 3 of the European Convention on Human Rights. "No one shall be subjected to torture or to inhuman or degrading treatment or punishment." Yet again, the patient was not consulted. Did she see her life as tortuous? Life On A Balance Sheet Most recently, the parents of a seriously ill premature baby want her to have "every chance of survival", and have taken their case to court. Charlotte Wyatt weighed just one pound when she was born 11 months ago and has serious heart and lung problems. Doctors believe her quality of life will be terrible, and want to let her die if she stops breathing again. The parents told the court that they want to "hang on" to any real prospect for Charlotte, hoping eventually to take their daughter out "so that she can have the feel of fresh air on her skin". Parents Darren, 32, and Debbie, 23, believe that as she has survived this far, the baby must be given every assistance to help her live, but doctors say she will not survive beyond infancy because her lungs are so severely damaged. Darren and Debbie are Christians and their faith should be taken into account. One would hope that they would obtain video evidence of the viability of their child, argue the Human Rights Act 1998, the Geneva Convention etc. The key to this case is the applicant being able to show that the child is able to be viable. The parents of course face an uphill struggle given the expert evidence against them. The recent judicial review has become a "parents words against the doctors" when doctors hold enough status and position for the judge to take seriously. While Darren and Debbie are understandably emotional about their child, it would be advisable for them to concentrate on hard facts, law and to take a dispassionate outlook to their case. For instance - if the opposition expert states that the child is "Continuously in pain" then it is up to the parents legal advisers to show by video evidence that the child is not in pain. At present though, the case has become a debate without actual evidence being presented into court - apart from testimony. On the surface, it may seem kinder to let her die but again no one can actually predict the future. Many babies in the NHS are allowed to die for their "best interests" but how can a dead child be in the best interests of anyone? In all honesty, the doctors with their own scientific acumen cannot establish how the child feels. They can only "assume" and assumptions are open to errors of judgment. Somehow, it seems wrong to challenge the decision of vulnerable parents who are in emotional distress already. It was certainly not what the ethics of medicine ever intended. What does Portsmouth NHS Trust loose by attempting to carry out the wishes of the parents? The answer should be "nothing" but in reality the financial aspect is always in the forefront of every Trust's mind. The current legal challenge would certainly be in the best interests of their balance sheets. In all honesty, there would be absolutely nothing wrong with continuing with the parent's wishes. It would cause less emotional trauma to the parents and in all probability if the child has such a poor prognosis, she would die naturally. The parents would not be subjected to a court ordeal and a possible negative judgment, which may mean that they would always wonder, "Whether their child could have lived had the doctors not been given the right to end life". The doctors within this case should consider the aspect that they are in effect asking the parents to watch their child die while they decide to end her life. One can couch these terms in more sedate words - "best interests" "end of life decision" but in the end it would be a "killing". We cannot imagine any doctor wanting to allow vulnerable parents watch helplessly while they kill their little baby. Somehow, it seems inhumane and cruel. In this case, the death of the child would benefit the balance sheets but not the parents. It is interesting that the court has given the doctors who wish to end the life of this child anonymity. It is interesting that had these people not been doctors, they would be accused of attempting to terminate a person's life and their identities would be disclosed to the media. It is interesting to note that Portsmouth NHS Trust was involved in the case of Jill Baker. Jill found a Do Not Resuscitate notice in her notes in the year 2000. Age Concern campaigned tirelessly for her. It was obvious that the Do Not Resuscitate notice was not warranted. To quote the Hippocratic oath 'I will prescribe regimen for the good of my patients according to my ability and my judgement and never do harm to anyone. To please no one will I prescribe a deadly drug nor give advice which may cause his death.' This is the creed by which all doctors theoretically operate, but vague guidelines that leave the door wide open could easily lead to a rash of murderous doctors 'looking after their patients best interests' Harold Shipman is a man the medical profession would like you to forget, but he may not be by any means, the only one of his kind. After all, Harold ended the lives of many people on the Bland principle of "best interests" of the patient. This "best interests" justification has been used in the Do Not Resuscitate scandals as well as the decision to administer Diamorphine in patients. Examples are the case of David Glass recently decided at the European Court of Human Rights. It is also interesting that David Glass was admitted in the hospital in Portsmouth. It is rather intriguing that Portsmouth NHS Trust has been involved in several high profile cases to end the life of a patient. His Life, His Decision Leslie Burke knows that one day in the not too distant future he will present his family and his doctors with an impossible dilemma. They will have to decide whether the quality of his life has become so poor that it is no longer worth preserving, but is that decision not ultimately his to make? He knows that his physical and mental condition will only worsen in the future, but he is determined not to give doctors the power to decide if he lives or dies. At the moment, doctors can withdraw feeding tubes from patients unable to give consent. However, Mr Burke said, "A time will come when I may need artificial food and hydration. I am afraid that doctors who do not know me will make a decision as to whether my life is worth living." The 44-year old man was born with the progressive condition, cerebellar ataxia, a progressively degenerative disease, which will eventually lead to the loss of his ability to swallow, requiring artificial nutrition and hydration (ANH). Whilst very severely physically disabled, he remains mentally competent and will remain so up until the last days of his illness. He is also likely to retain awareness of pain and distress. His objection to the GMC's guidance has been the discretion, as he sees it, to allow clinicians to withhold or withdraw ANH against his wishes, leaving him to die of thirst. His determination to be given food and water until the end of his natural life prompted a legal challenge to medical guidelines introduced only last year. Mr Burke lives in Lancaster with his mother, 65, and 42-year-old brother, who suffers the same condition. He is, however, more disabled, being unable to speak and needing help with his personal care. Mr Burke was a postman until 1983 when his increasing disability meant he had to use a wheelchair. He said his mental ability is unimpaired but fears this could change. The guidelines in question were issued by the GMC after Ken Taylor, a GP in Preston, was suspended in 1999 for ordering nurses to let an 85-year-old stroke victim starve to death. Her family had supported the decision, but staff at her nursing home defied his orders until supplies ran out. As a result, the GMC told doctors when they can legally withdraw feeding and hydration from patients unable to give consent, who have little prospect of recovery. Yet to Leslie Burke and many others, this is not acceptable, so he took the GMC to court. The case, backed by legal aid, claimed the GMC guidance is a breach to the right of life under the European Human Rights Act. GMC head of standards, Jane O'Brien maintained that doctors were not allowed to withdraw food or fluids from patients with the intention of hastening or causing their death. "Doctors must act in patients' best interests, taking into account their known wishes and the views of those close to them." Despite her reassurances, the court did rule against the GMC in August 2004. The Court did take issue with those GMC statements concerning the withdrawal / withholding of ANH from non-dying patients. The best interests evaluation of the patient, it ruled, involves a welfare appraisal in the widest sense, taking into account a wide range of ethical, social, moral, emotional and welfare considerations. A patient's right to die with dignity is specifically protected by Articles 8 (right to personal autonomy), 2 (right to life) and 3 (right to protection from inhuman or degrading treatment) of the Human Rights Act. As Leslie Burke is likely to continue to have awareness long into the terminal stages of his illness, withdrawal of ANH in this case would therefore be a breach of his Article 3 and Article 8 rights. Article two of the Human Rights Act states that 'Everyone's right to life shall be protected by law. No one shall be deprived of his life intentionally save in the execution of a sentence of a court following his conviction of a crime for which this penalty is provided by law.' No doctor, therefore, has the right to decide life or death for any patient, unless that patient has made it clear that they wish to die. The Court found that the GMC's threshold for considering withdrawing ANH for the non-dying, incompetent, patient was too low and was in any event a matter for the Court to decide. Nonetheless, the Court did recognise that where a patient reaches his final hours and lapses into a dying coma, there is no longer any benefit to be derived from continued ANH. Provided he is insentient and otherwise being treated with appropriate dignity, there will be no breach of the Human Rights Act if ANH is withdrawn. The Court made it clear that it is now a legal requirement, and no longer simply a matter of good practice, to obtain a Court Order in the following circumstances. Where there is any doubt as to the patient's capacity to decide on treatment. Where there is any dispute amongst clinicians as to condition and prognosis, the patient's best interests or the likely outcome of withdrawing / withholding ANH. Where there is evidence that the incompetent patient would have wanted continued treatment. Where the patient (even if a child/incompetent) has resisted/disputed the proposed withdrawal of ANH. Where there is any opposition from those with a reasonable claim to be heard (e.g. family) as to a patient's best interest. This Judgment, to be implemented by April 2005, firmly places the onus on clinicians to recognise a patient's right to request ANH or its continuation, and is therefore a victory for Leslie Burke. Managers of healthcare providers may well find themselves the subject of Court Orders to ensure patients' wishes are carried into effect. Justice Munby ruled that a patient who was competent, or who had left specific instructions, could insist that doctors continue to provide AN&H for as long as the patient wished it. The case is important not only on a personal basis for Mr Burke, who described himself as 'ecstatic' following the ruling, but also for the treatment of disabled and terminally ill people who are mentally competent but physically incapable of communicating their wishes. It is very important that a clear distinction continues to be made between competency and capacity, as is explained in section 50 of the GMC's guidance notes, published in August 2002. We do not have the right to ask why would a man want to continue living in such horrendous circumstances, but we do have a duty to respect that right. The Disability Rights Commission said that, "Whilst doctors can claim to have medical expertise, they can claim no special expertise in non-medical matters which go to form the basis of what is in the patient's best interests. Those opinions could be based on a backdrop of negative images and poorly informed assumptions of intolerable suffering, unacceptable dependence on others or that a particular disability makes life not worth living." The quality of life test will, from now on, be overridden by an 'intolerability' test, whereby the patient themselves comes to a point where they deem their own life intolerable, rather than having such a decision taken by a doctor. However, there is a distinction that should not be forgotten. If a patient is physically capable of swallowing, then food and drink are given orally and so constitute 'nursing care'. It is of course already illegal to withdraw such care. If, however, a patient's condition results in them being unable to eat or drink normally, nutrition and hydration are then provided by a variety of artificial means. A patient who is terminally ill but not technically dying must be allowed access to feeding and hydration until they believe they have reached a stage where their illness is intolerable and they wish to die. Following the court ruling, Mr Burke now has the option of making that decision. The General Medical Council and the British Medical Association recently announced that they are appealing against the decision made for Mr Burke. In doing so. the medical profession are observed to challenge the wishes of the patient. This bizarre decision to appeal against the decision to the lay observer appears as a battle between the medical profession and the patient. It serves only to increase the antagonism and mistrust in doctors. Les Burke had the right idea when he told the BBC "I'm a bit taken aback, I thought they had more common sense". The GMC insists that they have appealed for "further clarification" on their guidelines. Everyone knows that the purpose of an appeal is to overturn the previous decision. To the average reader there is no other clarification required. The real reason for the appeal by the General Medical Council is this - as an organisation they are not used to being beaten in court. Arpad Toth and Richards have done it, but the GMC's arrogance pushes them to maintain a decorum of control. The appeal is all about not allowing a disabled and dying man defeat them in court. The decision has been damning to the General Medical Council. The "common sense" of the GMC is examined in a few instances. They left Harold Shipman on their registration list seven days after he was convicted as a serial killer, have currently taken no action against a junior doctor who killed a patient with a IV dose of potassium, was criticised by the Neale and Shipman inquiries and has recently been questioned over their totalitarian activities by a court judge. We would say that it is highly unlikely that the GMC have any common sense. Death from starvation and / or dehydration can take around 3 weeks, and is undoubtedly very unpleasant. A particularly cruel death sentence, in many respects. So, should Mr Burke, as a mentally competent adult who is fully aware of the progression of his illness, also be legally able to decide not only when but how he dies? The courts have now said that he should, and that has to be a major victory for common sense. Everyone has a right to life, no matter how that life might seem to others. Doctors especially need to remember that. The debate continues… Resources Parents Fight Medics on Right to Die Don't Let Baby Die Pleads Father Swiss Groups Helped 22 Brits Die GMC Supports End of Life Decision Patient Wins Right to Life Ruling GMC Appeals in Right to Food Case RELATED CASE LAW AND GUIDELINES Court Decision - Leslie Burke v GMC BMA GUIDELINES - TREATMENT DECISIONS IN PVS Treatment decisions for patients in persistent vegetative state Revised June 1996 Cessation of treatment, non-resuscitation, aiding suicide & euthanasia GMC GUIDELINES - WITHDRAWAL OF TREATMENT Withholding and Withdrawing Life-prolonging Treatments: Good Practice in Decision-making SUMMARY OF COURT DECISIONS IN END OF LIFE DECISIONS The following brief case references give an indication of how both the European Court of Human Rights in Strasbourg and the English courts have addressed decisions about clinical care at the end of life. Cases are given in chronological order, with the Strasbourg cases coming first. Widmer v Switzerland, 10/02/1993 Pretty v United Kingdom, 29/04/2002 Glass v United Kingdom, 18/03/2003 Glass v United Kingdom, 09/03/2004 A NHS Trust v D & ors, 12/07/2000 NHS Trust A v Mrs M; NHS Trust B v Mrs H, 25/10/2000 North Staffordshire Combined Healthcare Trust v Dorothy Humphries
(also known as NHS Trust A v H), 30/03/2001 R (on the application of Pretty) v Director of Public Prosecutions
(respondent) & Secretary of State for the Home Department
(interested party), 29/11/2001 NHS Trust v I, 22/07/2003
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