Mahes Visvalingam
Post-retirement postingsPlease note that this site is under construction.
End of Life Issues in Britain
CONTENTS
Disclaimer
Political BackgroundPhilosophical viewpoints and ethical positions
End of Life Care Programme InitiativesEnd of Life - Political Background
1. In Jan 2006, the Department of Health published a command paper called Our health, our care, our say: a new direction for community services. The Executive Summary states that people and patients want more health care in the community and that shifting care closer to the home also delivers better value for money. It concludes that "The same procedure in primary care can cost as little as one-third compared to secondary care. Wherever long-term conditions are well managed in the community, emergency bed days are diminished considerably" (para 31). So, there will be a shift from secondary to primary care and community services (para 30).
2. The NHS End of Life Care Programme (EoLC) http://www.endoflifecare.nhs.uk/eolc
The EoLC Programme was launched in May 2006 to improve the quality of care at the end of life for all patients and enable more patients to live and die in the place of their choice (their homes or care homes) and avoid unnecessary emergency admissions to hospitals. The EoLC site aims to support the programme by sharing good practice, resources and information. We will look at the EoLC Programme initiatives later.
3. Lord Joffe and Assisted Dying
Euthanasia, i.e. the terminating of life at the patient's request, has been illegal in UK. Following the Suicide Act 1961, suicide is no longer a crime but assisting suicide is. However, there are different forms of euthanasia and the terminology is confusing. The wiki page points out that euthanasia can be achieved in 3 ways: 1) aggressive, when life is ended by force or through a fatal substance; 2) non-aggressive (or assisted), when life-support is withdrawn; and, 3) passive, when common treatments (such as antibiotics, drugs, or surgery) are withheld and medication (such as diamorphine, which may have a double effect of precipitating death) are administered to make the patient comfortable. It is difficult to establish whether a particular death, resulting from diamorphine use, was due to an accident (unintended double-effect), physician-assisted suicide or murder. The wiki page claims that passive euthanasia ... is currently common practice in most hospitals (see also Daily Telegraph report 19/05/07). The British Medical Association and the General Medical Council stated that they had no evidence of covert euthanasia (See House of Lords, para 79) but practitioners are hardly likely to own up publicly while assisting suicide is a criminal offence.
Passive euthanasia is open to abuse, as when the infamous Dr Shipman used lethal doses of morphine to end the life of many elderly patients, without documented consent of the patient and/or their family. This amounts to involuntary passive euthanasia. Even voluntary euthanasia (where a physician administers the lethal dose at the request of the patient) is not legal in all countries. Some have only sanctioned assisted suicide, where the patient has to administer the lethal prescription.
Developments elsewhere (House of Lords Select Committee Papers):
Switzerland: laws written in 1937 and implemented in 1942 legalised assisted suicide.
Voluntary euthanasia is illegal.
Growth of suicide organisations in the 1980s, provoking fear of euthanasia industry.
Assisted suicide not restricted to the terminally ill;
it is also available to elderly, mentally ill and others.The Oregon Death with Dignity Act (ODDA)1994 came into operation in 1997.
Legalised assisted suicide.Netherlands 2002: pre-existing practice of euthanasia became legal by statute rather than case law.
Legalised assisted suicide and voluntary euthanasia.Belgium 2002 legalised voluntary euthanasia.
See also: http://www.bbc.co.uk/religion/ethics/euthanasia/infavour/infavour_1.shtml
Between 2003-2006, there were repeated attempts by Lord Joffe to change the law in UK (see for example, report of 3 March 2005) to legalise both assisted suicide and voluntary euthanasia in England and Wales, but not in Scotland nor in N Ireland. His third attempt to legalise his private Assisted Dying for the Terminally Ill Bill in May 2006 was also blocked by the Lords - a very readable report of the House of Lords debate provides the arguments. The Bill is in keeping with the Libertarian ideology pursued by both New Labour and the Conservatives, which promotes "patient rights and choice" in selective (cost effective only?) areas.
Terminally ill patients, whose death is deemed to be imminent by doctors, already have the right to refuse potentially life-saving interventions and accept only palliative care, also known as comfort care. To all intents and purposes, the EoLC Care Programmes legitimise voluntary passive euthanasia through use of personal care plans, which function as living wills. A living will is a statement written by a mentally alert patient that can be used to reject resuscitation and other specific treatments. Many regard even passive euthanasia as murder or suicide, both of which are regarded as sinful by many religions.
4. The Mental Capacity Act 2005 and advanced refusal of treatments
4.1 An article posted on 31 Mar 2007, reports doctors' objections to The Mental Capacity Act 2005, which will be in force in England & Wales from October 2007. For background : see introduction to the Legislative Passage and the debates at Committee stage. The government did not want to use the term voluntary passive euthanasia (15 March 2005, column 1276) in this well intentioned Act. Passive euthanasia is a small but significant part of the Act and discussants in both Houses of Parliament were concerned that the wording was not as tight as it should be to exclude abuse and other problems.
4.2 The Act recognises advance refusal of treatment as legally binding (see 10 Jan 2005, column 14) - it is referred to as Advance Decision in the document Advance Care Planning: A Guide for Health and Social Care Staff (28 Feb 2007, see Section 4) and as Advance Directive by some others. The conditions under which the Advance Decision may become invalid are also stated and illustrated (see http://www.dca.gov.uk/menincap/legis.htm#codeofpractice - Chapter 9). There was much discussion about Artificial Nutrition and Hydration (ANH). The European Court of Human Rights rejected Leslie Burke's attempt to ensure that he will not be dehydrated or starved to death in the final stages of his ultimately fatal illness since the GMC holds that patients do not have the right to request treatments and ANH is classified as treatment; the provision of treatments is at the doctor's discretion. The government, in its response to the Select Committee on Human Rights, replied that ANH will be given unless this was explicitly refused by the patient in the advanced refusal (see Question 8 and para 28 in particular).
4.3 In early 2005, several amendments to the Act were proposed to ensure that it does not criminalise or damage the reputation and career of doctors and nurses who do not comply with the patient's advance refusal. Conscience-stricken doctors have to give reasons for deviating from the 'living will' and have to hand over the care of the patient to another doctor who is willing to act on it.
4.4 The Act also deals with how decisions about the withdrawal of treatment will be made when there is no Advance Decision (see 10 Jan 2005, column 15). Even at the final consideration of Lords Amendments on 5 April 2005 in the House of Commons (column 1368), Ian Duncan Smith (former leader of the Conservative Party) expressed concern that it will be possible for someone who might otherwise live to have life-sustaining treatment withdrawn because someone who was appointed as attorney believes that it is the right thing to do. ... Someone charged as an attorney could make a decision with the purpose of ending life. That is in the Bill. He regretted that the Bill did not exclude the possibility of such involuntary assisted euthanasia.
4.5 In a program entitled The Insider: Let them Die (Channel 4, 7.30 pm Fri 6 Apr 2007), Clover Stroud argued that doctors should also consider the impact of their life and death decisions on the patient's family. Families put under prolonged strain - physical, emotional and financial - become exasperated, especially when their role as a carer undermines their duty of care to their (other) children. Should mentally retarded children and people who lose their mental capacity due to an accident or dementia be allowed to die because they are a burden on others? Given that this is going to be an escalating problem with people living longer, should society be seeking alternatives to euthanasia?
4.6 A wide ranging and complex Code of Practice (see http://www.dca.gov.uk/menincap/legis.htm#codeofpractice - Chapter 9 deals with Advance Decision) and a number of Guides (see http://www.dca.gov.uk/legal-policy/mental-capacity/guidance.htm) have been drawn up. All sorts of people who care for those with impaired mental capacity need to show that they are guided by The Code of Practice, which has legal force. Section 9 of the Code of Practice is peppered with IF statements, revealing some of the circumstantial and subjective elements involved in implementing the Advance Decision - elements and judgements which could lead to litigation. It is therefore not surprising that the medical profession is concerned.
5. The British Medical Association (BMA )
The British Medical Association emphasises the patients' clear and indisputable right to care and assistance while dying but does not believe that patients have a right to assistance to end their lives. The July 2006 BMA report states that in 1997 the BMA opposed any changes to the English Common Law (which has stood from the 1300’s until their report) which disapproves of both suicide and assisting suicide. The BMA is concerned that legalisation might lead to undue pressure being exerted on the patient by family and society, and add to the anxiety felt by vulnerable, elderly and very ill patients. It undermines medicine's quest to save and improve the quality of life and creates a moral dilemma for dissenting health and social care professionals. On page 3 of the report, the BMA makes it very clear that if assisted euthanasia was legalised, there should be a clear demarcation between doctors for and against it.
6. Improvement of Palliative Care
With respect to palliative care, Lord Joffe said (see http://www.parliament.the-stationery-office.co.uk/pa/ld200405/ldselect/ldasdy/86/8605.htm#a6, para 27) "All we can say is that, if the patient wants to have palliative care, he should ask for it and they should try to arrange it; but, if they do not or it is not possible, then the patient must make up his mind. That is what autonomy is about. It is about choosing between the options available to you rather than the ones you would like to have" (Q 148). Looks like this is what the government means by "patient rights and choice". Baroness Finlay of Llandaff, one of the main objectors to Lord Joffe's Bill, has been much more constructive and has put forward her Palliative Care Bill on 16 Nov 2006. Her bill seeks to improve the quality of palliative care across the UK for the terminally ill to make it easier for them to live rather than easier to die. Evidence from Oregon and the Netherlands indicate that growth in provision of palliative care has made assisted dying less attractive since it is no longer seen as the only option.
Fear of pain is one reason why people tend to seek euthanasia. The elderly also fear that losing mental capacity might make them vulnerable to fraud and abuse. Seniors with no family support are especially vulnerable as noted in Financial arrangements and fear of fraud, which includes links to pertinent information.
7. Information for those affected by terminal illness and death
http://www.mariecurie.org.uk/whatwedo/ - caring for cancer patients in their own homes and in hospices
http://www.ifishoulddie.co.uk/terminal_illness.php - a checklist
http://www.ihi.org/IHI/Topics/LastPhaseofLife/
Mahes Visvalingam 9 Apr 07
Last updated on 13/10/07