1. McKhann G, Drachman D, Folstein M, Katzman R, Price D, Stadlan EM. Clinical diagnosis of Alzheimer’s disease: Report of the NINCDS-ADRDA Work Group under the auspices of department of health and human services task force on Alzheimer’s disease. Neurology. 1984;34:939–944.[PubMed]
2. Prince M, Bryce R, Ferri C (2011) World Alzheimer Report 2011: The benefits of early diagnosis and intervention. Alzheimer Disease International, http://www.alz.co.uk/research/WorldAlzheimerReport2011.pdf, Accessed on January 20, 2014
3. Dubois B, Feldman HH, Jacova C, Cummings JL, Dekosky ST, Barberger-Gateau P, Delacourte A, Frisoni G, Fox NC, Galasko D, Gauthier S, Hampel H, Jicha GA, Meguro K, O’Brien J, Pasquier F, Robert P, Rossor M, Salloway S, Sarazin M, de Souza LC, Stern Y, Visser PJ, Scheltens P. Revising the definition of Alzheimer’s disease: A new lexicon. Lancet Neurol. 2010;9:1118–1127.[PubMed]
4. Vos SJB, Xiong C, Visser PJ, Jasielec MS, Hassenstab J, Grant EA, Cairns NJ, Morris JC, Holtzman DM, Fagan AM. Preclinical Alzheimer’s disease and its outcome: A longitudinal cohort study. Lancet Neurol. 2013;12:957–965.[PMC free article][PubMed]
5. Bertens D, Knol DL, Scheltens P, Visser PJ, Alzheimer’s Disease Neuroimaging Initiative Temporal evolution of biomarkers and cognitive markers in the asymptomatic, MCI, and dementia stage of Alzheimer’s disease. Alzheimers Dement. 2015;11:511–522.[PMC free article][PubMed]
6. Amieva H, Le Goff M, Millet X, Orgogozo JM, Pérès K, Barberger-Gateau P, Jacqmin-Gadda H, Dartigues JF. Prodromal Alzheimer’s disease: Successive emergence of the clinical symptoms. Ann Neurol. 2008;64:492–498.[PubMed]
7. Wilson RS, Leurgans SE, Boyle PA, Bennett DA. Cognitive decline in prodromal Alzheimer’s disease and mild cognitive impairment. Arch Neurol. 2011;68:351–356.[PMC free article][PubMed]
8. Harrison J. Cognitive approaches to early Alzheimer’s disease diagnosis. Med Clin North Am. 2013;97:425–438.[PubMed]
9. Villemagne VL, Burnham S, Bourgeat P, Brown B, Ellis KA, Salvado O, Szoeke C, Macaulay SL, Martins R, Maruff P, Ames D, Rowe CC, Masters CL, Australian Imaging Biomarkers, Lifestyle (AIBL) Research, Group Amyloid β deposition, neurodegeneration, and cognitive decline in sporadic Alzheimer’s disease: A prospective cohort study. Lancet Neurol. 2013;12:357–367.[PubMed]
10. Saxton J, Lopez OL, Ratcliff G, Dulberg C, Fried LP, Carlson MC, Newman AB, Kuller L. Preclinical Alzheimer disease. Neuropsychological test performance 1.5 to 8 years prior to onset. Neurology. 2004;63:2341–2347.[PubMed]
11. Alzheimer’s Association. Alzheimer’s Association Report. 2011 Alzheimer’s diseases facts and figures. Alzheimers Dement. 2011;7:208–244.[PubMed]
12. Wimo A, Jonsson L, Bond J, Prince M, Winblad B, Alzheimer Disease International The worldwide economic impact of dementia 2010. Alzheimers Dement. 2013;9:1–11.[PubMed]
13. Wimo A, Reed CC, Dodel R, Belger M, Jones RW, Happich M, Argimon JM, Bruno G, Novick D, Vellas B, Haro JM. The GERAS study: A prospective observational study of costs and resource use in community dwellers with Alzheimer’s disease in three European countries – study design and baseline findings. J Alzheimers Dis. 2013;36:385–399.[PubMed]
14. ALCOVE Project (2013) The European Joint Action on Dementia. Synthesis Report 2013. ALzheimer COoperative Valuation in Europe (ALCOVE), 2013. http://www.alcove-project.eu/images/pdf/ALCOVE_SYNTHESIS_REPORT_VF.pdf, Accessed on February 18, 2014
15. ILC-UK. The European Dementia Research Agenda, http://ilcuk.org.uk/files/pdf_pdf_165.pdf, February 2011, Accessed on February 18, 2014
16. G8 Dementia Summit Declaration, https://www.gov.uk/government/publications/g8-dementia-summit-agreements, Published 11 December 2013, Accessed on February 18, 2014
17. Department of Health (2009) Living Well with Dementia: A National Dementia Strategy. London: Department of Health. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/168220/dh_094051.pdf, Accessed on February 18, 2014
18. Banerjee S. Living well with dementia – development of the national dementia strategy for England. Int J Geriatr Psychiatry. 2010;25:917–922.[PubMed]
19. Alzheimer Europe. In 2012 Dementia in Europe Yearbook. http://www.alzheimer-europe.org/Policy-in-Practice2/Country-comons/National-Dementia-Strategies-diagnosis-treatment-and-research, 2012, Accessed on February 18, 2014
20. Trova Norme and Concorsi Salute. Presidenza del consiglio dei ministry conferenza unificata. October 30 2014, http://www.trovanorme.salute.gov.it/norme/dettaglioAtto?id=50972&completo=true, Accessed on March 26, 2015
21. Brooker D, Fontaine JL, Evans S, Bray J, Saad K. Public health guidance to facilitate timely diagnosis of dementia: ALzheimer’s cooperative valuation in Europe recommendations. Int J Geriatr Psychiatry. 2014;29:682–693.[PubMed]
22. De Lepeleire J, Wind AW, Iliffe S, Moniz-Cook ED, Wilcock J, Gonzalez VM, Derksen E, Gianelli MV, Vernooij-Dassen M, Interdem Group The primary care diagnosis of dementia in Europe: An analysis using multidisciplinary, multinational expert groups. Aging Ment Health. 2008;12:568–576.[PubMed]
23. Dubois B, Feldman HH, Jacova C, Dekosky ST, Barberger-Gateau P, Cummings J, Delacourte A, Galasko D, Gauthier S, Jicha G, Meguro K, O’brien J, Pasquier F, Robert P, Rossor M, Salloway S, Stern Y, Visser PJ, Scheltens P. Research criteria for the diagnosis of Alzheimer’s disease: Revising the NINCDS-ADRDA criteria. Lancet Neurol. 2007;6:734–746.[PubMed]
24. Dubois B, Feldman HH, Jacova C, Hampel H, Molinuevo JL, Blennow K, DeKosky ST, Gauthier S, Selkoe D, Bateman R, Cappa S, Crutch S, Engelborghs S, Frisoni GB, Fox NC, Galasko D, Habert MO, Jicha GA, Nordberg A, Pasquier F, Rabinovici G, Robert P, Rowe C, Salloway S, Sarazin M, Epelbaum S, de Souza LC, Vellas B, Visser PJ, Schneider L, Stern Y, Scheltens P, Cummings JL. Advancing research diagnostic criteria for Alzheimer’s disease: The IWG-2 criteria. Lancet Neurol. 2014;13:614–629.[PubMed]
25. Albert MS, DeKosky ST, Dickson D, Dubois B, Feldman HH, Fox NC, Gamst A, Holtzman DM, Jagust WJ, Petersen RC, Snyder PJ, Carrillo MC, Thies B, Phelps CH. The diagnosis of mild cognitive impairment due to Alzheimer’s disease: Recommendations for the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimers Dement. 2011;7:270–279.[PMC free article][PubMed]
26. McKhann GM, Knopman DS, Chertkow H, Hyman BT, Jack CR, Jr, Kawas CH, Klunk WE, Koroshetz WJ, Manly JJ, Mayeux R, Mohs RC, Morris JC, Rossor MN, Scheltens P, Carrillo MC, Thies B, Weintraub S, Phelps CH. The diagnosis of dementia due to Alzheimer’s disease: Recommendations from the National Institute of Aging-Alzheimer Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimers Dement. 2011;7:263–269.[PMC free article][PubMed]
27. Cummings JL, Dubois B, Molineuvo JL, Scheltens P. International work group criteria for the diagnosis of Alzheimer disease. Med Clin North Am. 2013;97:363–368.[PubMed]
28. Molinuevo JL, Rami L. Applying the IWG research criteria in clinical practice: Feasibility and ethical issues. Med Clin North Am. 2013;97:477–484.[PubMed]
29. Morris JC, Blennow K, Froelich L, Nordberg A, Soininen H, Waldemar G, Wahlund LO, Dubois B. Harmonized diagnostic criteria for Alzheimer’s disease: Recommendations. J Intern Med. 2014;275:204–213.[PubMed]
30. Boise L, Morgan DL, Kaye J, Camicioli R. Delays in the diagnosis of dementia: Perspectives of family caregivers. Am J Alzheimers Dis Other Demen. 1999;14:20–26.
31. De Vugt ME, Verhey FR. The impact of early dementia diagnosis and intervention on informal caregivers. Prog Neurobiol. 2013;110:54–62.[PubMed]
32. Iliffe S, Manthorpe J. The hazards of early recognition of dementia: A risk assessment. Aging Ment Health. 2004;8:99–105.[PubMed]
33. Mattsson N, Brax D, Zetterberg H. To know or not to know: Ethical issues related to early diagnosis of Alzhiemer’s disease. Int J Alzheimers Dis. 2010;2010:841941.[PMC free article][PubMed]
34. Milne A. Dementia screening and early diagnosis: The case for and against. Health Risk Soc. 2010;12:65–76.
35. Gauthier S, Leuzy A, Racine E, Rosa-Neto P. Diagnosis and management of Alzheimer’s disease: Past, present and future ethical issues. Prog Neurobiol. 2013;110:102–113.[PubMed]
36. Gaugler JE, Ascher-Svanum H, Roth DL, Fafowora T, Siderowf A, Beach TG. Characteristics of patients misdiagnosed with Alzheimer’s disease and their medication use: An analysis of the NACC-UDS database. BMC Geriat. 2013;13:137.[PMC free article][PubMed]
37. Moher D, Liberati A, Tetzlaff J, Altman DG, Group PRISMA Preferred reporting items for systematic reviews and meta-anlayses: The PRISMA statement. Ann Intern Med. 2009;151:264–269.[PubMed]
38. Carpenter BD, Xiong C, Porensky EK, Lee MM, Brown PJ, Coats M, Johnson D, Morris JC. Reaction to a dementia diagnosis in individuals with Alzheimer’s disease and mild cognitive impairment. J Am Geriatr Soc. 2008;56:405–412.[PubMed]
39. Iliffe S, Manthorpe J, Eden A. Sooner or later? Issues in the early diagnosis of dementia in general practice: A qualitative study. Family Pract. 2003;20:376–381.[PubMed]
40. Fox M, Fox C, Cruickshank W, Penhale B, Poland F, Steel N. Understanding the dementia diagnosis gap in Norfolk and Suffolk: A survey of general practitioners. Qual Prim Care. 2014;22:101–107.[PubMed]
41. Wilcock J, Iliffe S, Griffin M, Jain P, Thuné-Boyle I, Lefford F, Rapp D. Tailored education intervention for primary care to improve the management of dementia: The EVIDEM-ED cluster randomized trial. Trial. 2013;14:397.[PMC free article][PubMed]
42. Littlewood C, Seymour J, Owen V. Does treating Alzheimer’s disease early, delay institutionalisation? Int J Geriatr Psychiatry. 2010;25:1307–1309.[PubMed]
43. Bruandet A, Richard F, Bombois S, Maurage CA, Deramecourt V, Lebert F, Amouyel P, Pasquier F. Alzheimer disease with cerebrovascular disease and vascular dementia: Clinical features and course compared with Alzheimer disease. J Neurol Neurosurg Psychiatry. 2009;80:133–139.[PubMed]
44. Banerjee S, Wittenberg R. Clinical and cost effectiveness of services for early diagnosis and intervention in dementia. Int J Geriatr Psychiatry. 2009;24:748–754.[PubMed]
45. Weimer DL, Sager MA. Early identification and treatment of Alzheimer’s disease: Social and fiscal outcomes. Alzheimers Dement. 2009;5:215–226.[PMC free article][PubMed]
46. Getsios D, Blume S, Ishak KJ, Maclaine G, Hernandez L. An economic evaluation of early assessment for Alzheimer’s disease in the United Kingdom. Alzheimers Dement. 2012;8:22–30.[PubMed]
47. National Audit Office. Improving dementia services in England – an interim report. GP survey results. 2010. http://www.nao.org.uk/wp-content/uploads/2010/01/091082.pdf, Accessed on July 17, 2014
48. Downs M, Turner S, Bryans M, Wilcock J, Keady J, Levin E, O’Carroll R, Howie K, Iliffe S. Effectiveness ofeducational interventions in improving detection and management of dementia in primary care: Cluster randomised controlled study. BMJ. 2006;332:692–696.[
Euthanasia is a debatable issue. It is illegal all over the world. The Netherlands is the only country where euthanasia and physician-assisted suicide are openly practised since the physician performing these acts will not be prosecuted under certain circumstances. There were several court cases and court decisions that affected the development of euthanasia and physician-assisted suicide in individual countries. When a patient asked for euthanasia, it was very important to find out the underlying reasons and make all legal means available to relieve the pain and other distressing symptoms.
Chao DVK, Chan NY and Chan WY. Euthanasia revisited. Family Practice 2002; 19: 128–134.
Euthanasia comes from the Greek words, ‘EU' meaning ‘good' and ‘THANATOS' meaning ‘death'.1 Bringing these together, euthanasia means ‘the good death'. In most parts of the world, euthanasia is considered illegal. However, it is openly practised in some areas. The physician performing this act will not be prosecuted under certain circumstances, although it is regarded as illegal under the law in that region. The country most well known for performing euthanasia is The Netherlands.2,3 In Hong Kong, euthanasia is illegal in all respects and is not accepted among medical professionals.4,5
This article discusses the issues of euthanasia, other related issues and the situations in The Netherlands and other parts of the world.
Euthanasia is a debatable issue. It is not just a medical ethical problem, it also has philosophical, legal, religious and political dimensions. Discussions on this topic are complicated further by misunderstanding and confusion of the terminology. Therefore, it is worthwhile to clarify the definitions first.
What is euthanasia? Classically, euthanasia was defined as the hastening of death of a patient to prevent further sufferings. Within this broad definition, there are several terms used to describe different forms of euthanasia, namely voluntary, involuntary and non-voluntary euthanasia; and active and passive euthanasia.1,6
There is no agreement on the precise meaning of these terms. Voluntary euthanasia usually refers to euthanasia with the patient's consent. The patient has expressed a wish to die and someone performs the act of euthanasia to let him die. Involuntary euthanasia does not involve the patient's consent. The patient is competent to express his will and is able to make a decision, but has not been consulted, and his life is ended by an act of euthanasia. Non-voluntary euthanasia means that the euthanasia is performed when a patient is not competent to make a decision, for example when the patient is comatosed, mentally insufficient or is not able to express a wish, such as a baby born with severe congenital abnormalities.
Active euthanasia refers to euthanasia as a result of someone performing an act such as injection of a lethal drug, whereas passive euthanasia means euthanasia resulting from the omission of an act. Conventionally, active euthanasia was different from passive euthanasia in that the latter was to withhold or withdraw treatment, while the former was active killing. However, a famous philosopher, James Rachels, argued that “active euthanasia is not any worse than passive euthanasia”. His argument is that since the outcome is the same and both acts lead to a patient's death, there is no difference between active and passive euthanasia in terms of the moral aspect.6,7
Passive euthanasia often refers to forgoing life-sustaining treatment in general, but it also denotes an intention to kill. Since this term was misleading and caused unnecessary confusion and misunderstanding, it was not used in official discussions on euthanasia in major western countries.8
To avoid unnecessary confusion and misunderstanding, therefore, in the following discussion euthanasia is defined as “direct intentional killing of a person as part of the medical care being offered”.4,5
There are other terms which are important in the discussion of euthanasia. They are physician-assisted suicide, withholding or withdrawing life-sustaining treatment, and medical futility.
Physician-assisted suicide means that the physician provides the means by which the patient can end his life. Usually, the physician will prescribe a lethal drug which is administrated by the patient himself. Throughout the world, the Northern Territory of Australia was the first place that physician-assisted suicide had ever been legal until the Rights of the Terminally Ill Bill was overturned in 1997.9,10
Withholding or withdrawing life-sustaining treatment simply means that the physician forgoes the life-sustaining treatment for a terminally ill patient taking into account the patient's benefit, the wishes of the patient and family, and the futility of treatment. It is legally acceptable and appropriate.4,5 However, what kind of treatment will be considered to be medically futile? What does medical futility mean?
There is no agreement on the definition of medical futility. Some authors tried to define this term in two aspects, quantitatively and qualitatively. Schneiderman et al. proposed a definition for medical futility in 1990 and further clarified their original proposal in 1996. In defining the quantitative aspect, they proposed that “when physicians conclude (either through personal experience, experiences shared with colleagues, or consideration of reported empirical data) that in the last 100 cases, a medical treatment has been useless, they should regard that treatment as futile”. It means that the treatment has less than a 1 in 100 chance of benefiting the patient. The qualitative portion of the definition stipulated that if a treatment merely preserves permanent unconsciousness or cannot end dependence on intensive medical care, physicians should consider the treatment futile.11–13
Experience and development of euthanasia worldwide
The Voluntary Euthanasia Society, also known as Exit, was founded in 1935 in the UK. It was the first publicly acknowledged euthanasia society in the world and was organized to campaign for the legalization of euthanasia.1 The idea of legalizing euthanasia was then debated more vigorously in many public forums. In the next year, a bill to legalize euthanasia was debated in the House of Lords in the UK, but it was rejected.14,15
Nevertheless, the Second World War changed the atmosphere of discussion on euthanasia. In 1939, the Nazis started the ‘euthanasia programme' in various specialized medicine departments. It was estimated that >70 000 psychiatric patients fell victim to the programme. The victims were gassed or poisoned.16 It was this ‘euthanasia programme' that quelled the discussion on euthanasia.
The debate became silent for a long period until the 1970s. In the 1970s and early 1980s, the discussion on euthanasia became a more extensive academic debate7 and a point of public contention, especially in The Netherlands.14,15 There were several important cases and court decisions, together with several important acts or bills legalized in various countries. These became the cornerstones in the development of euthanasia in the world.
The following sections discuss the experience and development of euthanasia around the world, especially The Netherlands, Australia, the USA and the UK.
The Netherlands is the only country where euthanasia and physician-assisted suicide are practised openly. Although both euthanasia and physician-assisted suicide are still subject to criminal law, the physicians will not be prosecuted if they perform these acts in accordance with the formal regulation.2 Since the first court case of euthanasia in 1973, public debate on euthanasia and physician-assisted suicide has become more intense.
The Royal Dutch Medical Association stated that “Legal euthanasia should remain a crime, but that if a physician, after having considered all the aspects of the case, shortens the life of a patient who is incurably ill and in the process of dying, the court will have to judge whether there was a conflict of duties which could justify the act of the physician”.3
In 1984, the Royal Dutch Medical Association stated that physicians performing euthanasia and assisted suicide would not be prosecuted if they met the following requirements: (i) the request by the patient must be voluntary, durable and persistent; (ii) the patient was fully informed about the medical condition and the prognosis, and there was no other alternative treatment available; (iii) the patient had unbearable suffering(s); and (iv) the physician had consulted with another physician.2,17
The State Commission on Euthanasia published its report in 1985. The proposal was similar to the for-mer statements that the physician performing euthanasia should not be punished by law under certain circumstances.3
In 1990, the Royal Dutch Medical Association and the Dutch Ministry of Justice made an agreement on the notification procedure. The physician performing euthanasia or assisted suicide was guaranteed immunity from prosecution if a certain number of ‘rules of careful practice' had been followed. Based on the guidelines developed in 1984, the physician was also requested to report the case as euthanasia or physician-assisted suicide to the medical examiner by means of an extensive questionnaire, but not as a case of natural death. The medical examiner then reported to the public prosecutor who would decide whether a prosecution should start.2,17,18
The Remmelink Committee, set up by the Dutch government in 1990, appointed van de Maas and his colleagues to provide the information of euthanasia practice in The Netherlands.
The study found that in 1990 in The Netherlands:
Of the 129 000 deaths, there were 2300 cases of euthanasia, accounting for 1.8% of all deaths.
There were 400 cases of physician-assisted suicide, accounting for 0.3% of all deaths.
There were 22 500 cases of alleviation of pain and symptoms with high dosage of opioids, representing 17.5% of all deaths.
There were 22 500 cases of death resulting from a non-treatment decision, representing 17.5% of all deaths.
There were 1000 cases of death resulting from administration of a drug with the explicit intention to shorten the patient's life, without the strict criteria for euthanasia being fulfilled. This represented 0.8% of all deaths.
Each year, there were ~9000 explicit requests for euthanasia or assisted suicide, of which less than one-third were agreed to. In the remaining cases, alternatives were found that had made life bearable again or the patient died before any action had been taken.17–19
One challenge to the guideline for euthanasia and physician-assisted suicide in The Netherlands was the apparent ‘slippery slope' phenomenon. This could be illustrated by the Chabot case, the Prins case and the Kadijk case.
Dr Chabot, a psychiatrist, helped a physically fit patient with a history of depression for 20 years to commit suicide by prescribing a lethal drug in 1991. The Dutch Supreme Court found Dr Chabot guilty as charged only because he had not ensured that the patient was actually examined by another doctor before he assisted her suicide. The court stated that defence of necessity was not limited to cases where the suffering of the patient was of somatic origin, it could also apply to patients with entirely non-somatic suffering.17,20
The Prins case and the Kadijk case demonstrated the controversy further. In 1993, Dr Prins gave a lethal injection to a baby girl born with a partly formed brain and spina bifida, after consulting her parents and other physicians. In 1995, the District Court in Alkmaar refused to punish him. In the Kadijk case, a physician was charged with murder for administrating a lethal injection to a severely disabled baby. The court reached an almost identical conclusion to that in the Prins case.17
After these cases, the Royal Dutch Medical Association adopted a new guideline for euthanasia and physician-assisted suicide in 1995. Based on the former guideline, it also required expert advice from at least one other independent physician, who must have examined the patient personally and written a report.17,21
In 1999, a new bill was proposed that a physician could agree with the requests of terminally ill children aged 12–15, even without the consent of parents, if they were convinced that this would ‘prevent serious detriment' to the patient. This bill is still awaiting approval from the Dutch Parliament.22
In April 2001, the Dutch senate passed a bill to allow euthanasia and physician-assisted suicide. It made The Netherlands the first country to legalize the practice formally.23,24
The Northern Territory of Australia was the first place in the world to pass laws allowing a physician to end the life of a terminally ill patient. The Rights of the Terminally Ill Act was passed by the Northern Territory Parliament on 25 May 1995. This act then became law on 1 July 1996.9,25,26
Under the Act, the consent of two doctors and a psychiatrist was required. The patient had to be aged 18 or over, with a sound mind and suffering from a terminal illness with an unacceptable amount of pain or suffering. Moreover, there must be no other palliative care options “reasonably available to the patient to alleviate the patient's pain and suffering to levels acceptable to the patient”. The physician who assisted a patient in terminating his life would not be subject to civil or criminal action or professional disciplinary action for anything done in good faith and without negligence in compliance with this Act. There was a 7 day waiting period, followed by a 48 h ‘cooling off' period.25–27
Mr Bob Dent, a 66-year-old Darwin resident suffering from carcinoma of the prostate, became the first person in the world to die under euthanasia legislation. On 22 September 1996, Dr Philip Nitschke, the leading supporter of euthanasia in the Territory, helped him to die with a computer-linked machine that allowed the patient to administer the lethal injection by himself.28–30
Mrs Janet Mills, a 52-year-old lady suffering from mycosis fungoides, was the second patient to die under the Act with the assistance of Dr Nitschke.30,31
However, just 6 months after the first death under the Act, the Rights of the Terminally Ill Act was overturned by the Australian Federal Senate. This brought the end of the world's first law legalizing euthanasia.10,30–32
In the USA, withholding and withdrawing life sustaining-treatment was the main focus of discussion in the 1970s and 1980s.
In 1975, Karen Ann Quinlan, a 21-year-old woman, went into a coma. She was put on a ventilator for breathing. Because of her persistent vegetative state, the family members began to request to discontinue the ventilator support. Eventually, the court decided that if there was no chance of Karen ever becoming conscious, the life support system could be removed.6,15,33
In the 1980s, 35 states and the District of Columbia passed the Natural Death Acts. These acts recognized the legality of a ‘living will', that allowed a person to specify what treatment they would want to receive given a terminal condition.6
In 1988, there was the Nancy Cruzan case, in which the young lady was in a persistent vegetative state for 4 years. Her life was maintained by artificial hydration and nutrition. The US Supreme Court decided not to allow discontinuation of the treatment since there was no clear and convincing evidence that she would want her treatment to be discontinued. However, the court stated that individual states could not ignore the expressed wishes of patient when satisfactory evidence was presented.1,6,15
In the 1990s, there was more debate on the issues of physician-assisted suicide, especially after considerable publicity given to Dr Jack Kevorkian.1
Dr Kevorkian, a retired pathologist, first assisted a patient with Alzheimer's disease to commit suicide in Michigan in June 1990. He claimed that he had assisted more than 100 deaths. He escalated his practice from assisting suicide to direct killing in the case of Thomas Youk, a patient suffering from amyotrophic lateral sclerosis. This time he prepared a video showing his action and let the video be broadcast on a national television news programme. He was then convicted on charges of second degree murder and imprisoned in 1999.1,34–36
In 1994, the focus for the debate on physician-assisted suicide shifted to the state of Oregon.
The Oregon Death and Dignity Act was passed in the Oregon general election in 1994. It stated that “An adult who is capable, is a resident of Oregon, and has been determined by the attending physician and consulting physician to be suffering from a terminal disease, and who has voluntarily expressed his or her wish to die, may make a written request for medication for the purpose of ending his or her life in a humane and dignified manner in accordance with this Act”.37 In August 1995, an Oregon judge decided that the law was unconstitutional because it did not give equal protection against suicide to terminally ill persons, and was therefore invalid. The act was then suspended pending the Supreme Court's decision.38
On 27 October 1997, the Oregon Death and Dignity Act became law to legalize physician-assisted suicide. According to the data collected, 15 persons died after taking the prescribed lethal medication during the first year's practice of physician-assisted suicide.39 However, on 27 October 1999, the House of Representatives voted to amend the act to make it a federal crime for doctors to prescribe drugs for terminally ill patients to end their lives.40 This ended the practice of legalized physician-assisted suicide in Oregon.
The UK was the first country to debate legalization of euthanasia, although the bill to legalize euthanasia was finally rejected in 1936.14,15 A Select Committee on Medical Ethics was set up to reconsider the subject of euthanasia after the Tony Bland and Nigel Cox cases in the early 1990s.1
Tony Bland was a victim of the disaster at Hillsborough football stadium in 1989. He was severely injured and remained in a persistent vegetative state. He was kept alive for three and half years by artificial feeding. In 1993, the Courts held that it was in the ‘best interests' of the patient and ‘good medical practice' if artificial feeding was discontinued. His artificial feeding was then withdrawn.1,41–43
Dr Nigel Cox was a rheumatologist who was involved in the death of a 70-year-old lady suffering from rheumatoid arthritis with severe complications. As her pain was intractable, Dr Cox administered a lethal injection of potassium chloride, which resulted in her death. The Winchester Crown Court found him guilty as charged. The Professional Conduct Committee described his conduct as “unlawful and wholly outwith a doctor's professional duty to a patient”, but expressed its profound sympathy for his situation and declined to suspend his registration or take further action against him.1,17,43
After these cases, the House of Lords set up a Select Committee on Medical Ethics to investigate the related issues surrounding medical treatment decisions at the end of life. The report was published in February 1994. It recommended not to legalize euthanasia. It stated that competent patients had every right to refuse treatment whereas the incompetent also had the right to be protected from aggressive overtreatment to which the competent would object. It also recommended that adequate pain relief should be used even if this shortened life, and high quality palliative care should be made more widely available. The report also supported the use of living wills or advance directives, which set out the types of treatment that the patient would or would not accept in certain circumstances. This ended the debate on euthanasia issues surrounding the two cases.8,17,42,43
All over the world, the debate on euthanasia and physician-assisted suicide is a continuing process. In the early 1990s, there was the Sue Rodriguez case in Canada.44 In 2000, a new law was proposed to permit doctors to carry out euthanasia and remove euthanasia from criminal law in Belgium.45 The debate will go on.
There were arguments both for and against the practice of euthanasia and physician-assisted suicide. For instance, in the election of the Oregon Death and Dignity Act, there were 51% of voters in favour of and 49% opposing the Act.38 Both sides had their own supporters.
Some may agree with euthanasia and physician-assisted suicide for the terminally ill patient for the following reasons:
it can relieve unbearable suffering of the patient;
it can relieve burdens from the relatives;
the patient has a right to die;
the patient can die with dignity; and
the limited resources can be reallocated.
In the study by van der Maas et al. in The Netherlands in 1990, it was demonstrated that patients made the request for euthanasia for the following reasons: loss of dignity mentioned in 57%, pain in 46%, unworthy dying in 46%, being dependent on others in 33% and being tired of life in 23% of the cases.19
In fact, the public support for legalization of euthanasia and physician-assisted suicide has been increasing over time. In the USA, in 1950, only 34% of citizens agreed that physicians should be allowed to hasten the lives of patients with incurable diseases. By 1991, the figure increased to 63%.46 Bachman et al.47 showed that 66% of Michigan adults supported legalization of physician-assisted suicide, while only one-quarter of the public preferred a ban. Emanuel et al.48 demonstrated that about two-thirds of oncology patients and the public found euthanasia and physician-assisted suicide acceptable for patients with unremitting pain.48
Physicians' attitudes toward the practices of euthanasia and physician-assisted suicide were also very important: 56% of Michigan physicians supported legalization of physician-assisted suicide.47 However, significantly fewer oncologists found euthanasia and physician-assisted suicide acceptable.48 In Washington, a slight majority of physicians favoured legalization of euthanasia and physician-assisted suicide. There were 54 and 53% of physicians who thought that euthanasia and physician-assisted suicide, respectively, should be legal in some situations.49 In Oregon, 60% of physicians thought that physician-assisted suicide should be legalized in some cases.50
The actual practices of euthanasia and physician-assisted suicide varied between different countries. In a national survey in the USA, Meier et al. found that 18.3% of physicians had received a request for physician-assisted suicide and that 3.3% had engaged in the practice, while 11.1% had received a request for a lethal injection and 4.7% had engaged in giving a lethal injection.51 Lee et al. found that 21% of Oregon physicians had received a request for physician-assisted suicide in the past year and that 7% complied with the requests.50 In a group of oncologists in the USA, Emanuel et al. found that 57.2% had received a request for euthanasia or physician-assisted suicide and that 13.6% had carried out the practice.48 In a sample of consultants and GPs in the UK, Ward and Tate found that 45% had been asked for euthanasia and that 14% had taken action to end the patient's life.52 In The Netherlands, van der Mass et al. found that 88% of physicians had received at least one request for euthanasia or physician-assisted suicide and that 53% had complied at some time in their clinical practice.53
In a study concerning euthanasia in The Netherlands carried out in 1995, van der Mass et al. found that euthanasia accounted for at most 2.4% and physician-assisted suicide for at most 0.4% of all deaths. It seemed that there was no sign of an unacceptable increase in less careful decision making for euthanasia and physician-assisted suicide.53
Although the majority of the public and a large number of physicians supported legalization of euthanasia and physician-assisted suicide, the public policy in general does not favour these interventions. This was evident by the rejection of the Rights of the Terminally Ill Act in the Northern Territory of Australia in 1997 and by the end of the Oregon Death and Dignity Act in USA in 1999. There were other arguments against these practices which follow.
The suffering was not relieved adequately. The unbearable suffering may be due to inadequate palliative care support and/or inadequate pain relief. Therefore, the safeguard measure is to improve the palliative care. Moreover, the request may be due to a co-morbid condition, e.g. major depression. Breitbart et al. found that the desire for hastened death in a group of terminally ill patients with cancer was significantly associated with a clinical diagnosis of depression.54 Another study showed that terminally ill patients with depressive symptoms were more likely to consider euthanasia or physician-assisted suicide.55 Patients with major depression can be treated effectively even in the presence of terminal illness. If the act of euthanasia was allowed to be carried out, there might be confusion in identifying medical negligence.
Patients changed their minds in the course of their illnesses. In the same study by van der Maas et al., it was demonstrated that of the total number of patients' requests for euthanasia and assisted suicide, only less than one-third were finally adhered to. In most cases, alternatives were found that made life bearable again.19 Patients might also have changed their minds due to some unfinished business.
The ‘slippery slope’ phenomenon. At the beginning, euthanasia was only performed for terminally ill patients, and then it widened to include the chronically ill. The danger was that it may be extended further to involve those in a persistent vegetative state, those with AIDS, the elderly, etc.15 The Chabot case demonstrated the shift of euthanasia practice from physically ill patient to mentally ill. The Prins and Kadijk cases showed that it was widened to include non-voluntary patients. Moreover, there was a case of euthanasia for a dementia patient in The Netherlands in 1999.56 If the trend continued, it would further involve those who were mentally retarded, socially unproductive, and even racially unwanted.
Patients may lose trust in physicians. If a physician could save a life and, on the other hand, could end a life, it would create ambiguity in the duty of the physician. This would undermine the patients' trust in doctors and would in turn erode the medical profession.14
A patient's decision may be affected by pressure from a relative. If a terminally ill patient found that he was a burden to the family and especially if the family members also felt the same, the request for euthanasia would not be a totally voluntary decision. The decision may have resulted from the relatives' pressure. This request may also be abused by the relative, or even by the physician.14
Abuse by politicians. The Nazis killed thousands of Jews in the Second World War by the ‘euthanasia programme'. This was the worse scenario of the ‘slippery slope' theory that politicians used the legalized euthanasia practice to kill the racially unwanted.16
Sanctity of life. From the religious point of view, “nothing and no one can in any way permit the killing of an innocent human being, whether a fetus or an embryo, an infant or an adult, an old person, or one suffering from an incurable disease, or a person who is dying”.57
The patient's right to die does not mean the physician's right to kill. The Hippocratic Oath states that “I will give no deadly medicine to any one if asked, nor suggest any such counsel”. The terminally ill patient may die naturally because of the course of the disease, but it does not mean that it is justified for a doctor to give the patient a drug or perform an action to end his life.
Roles of a family physician
It is not uncommon for a family physician to see a patient with a terminal illness. The patient may only consult for minor problems; he may want to express his worry and concern about his condition; he may want to seek advice on pain relief. Therefore, if the patient requested euthanasia, what could a family physician do?
When facing a patient with such a request, a family physician should consider the following:58,59
Spend more time in understanding the patient's condition, his recent treatment, his family and social background, establish a good doctor–patient relationship and let the patient express his concerns, worry and suffering.
Investigate the underlying reasons for the request; ask whether there is inadequate pain relief, unbearable suffering or a feeling of being a burden to the family.
Try to involve the family members early in the care of the patient, because good social and psychological support is as important as any therapy to relieve the pain and suffering.
Explore the mental and psychological states of the patient, especially looking for depressive features, to see whether the request to die is due to major depression. In that case, anti-depressant therapy will make a difference.
Try to make all the possible legal options for relief and control of distressing symptoms available to the patient.
Refer the patient to other specialists if indicated, such as a hospice, home care team, psychiatrist and social worker.
Encourage and promote research on the improvement of relief of pain and distressing sufferings so that the next patient will be able to benefit.
Remember that euthanasia and physician-assisted suicide are illegal in most parts of the world. A family physician should always be firm in refusing any commitment to the performance of euthanasia and assisted suicide.
Euthanasia and physician-assisted suicide are illegal all over the world. However, it is openly practised in The Netherlands, where the physician performing these acts will not be prosecuted under certain circumstances.
Withholding or withdrawing life-sustaining treatment for a terminally ill patient taking into account the patient's benefit, the wishes of the patient and family, and the futility of treatment is legally acceptable and appropriate.
Various cases and different court decisions played an important role in the development of euthanasia practice in individual countries.
It is very important to explore the underlying reasons for a patient to request euthanasia and to provide all legal means of support to relieve pain and suffering.
Involve the family members and other community resources if indicated early in the management of patients who are terminally ill.
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Crit Care Clin: Ethical Issues