
Key research
Opponents of assisted dying for the terminally ill seek to discredit the benefits of a change in the law by expressing their fears of perceived negative consequences. They will argue that a change in the law will create a 'slippery slope', will restrict the provision of palliative care, create a 'duty to die' and damage the doctor patient relationship. They will also seek to deny underground practices in the UK and talk of abuse in the Netherlands. Significant research has shown that all of these fears are unfounded:
Despite the fact that assisted dying legislation would offer a clear framework of protection, some claim that vulnerable groups will be at risk if assisted dying was legalised:
Margaret Battin article (published in 2007)
Objective:
The aim of the study was to examine whether the assisted dying legislation in the respective countries has had any disproportionate impact on 10 groups of potentially vulnerable patients.
Scope:
Oregon and the Netherlands
Design:
The researchers examined data from Oregon and the Netherlands. The data from Oregon comprised of nine annual reports by the Department of Human Services (which has compiled data on all assisted deaths in Oregon since the assisted dying legislation became law), and three independent studies. The results for the Netherlands are based on all four government-commissioned nationwide studies and are complemented by specialised independent studies.
Findings:
After carefully examining the data, the researchers found no evidence of increased likelihood of using assisted dying legislation for the following groups:
a) The elderly: younger patients are more likely to choose an assisted death than older patients.
b) Women: men are slightly more likely to choose an assisted death than women.
c) The uninsured: the data from Oregon confirmed that people without health insurance were not more likely to request or go through with a medically assisted death than those with health insurance. In the Netherlands everyone is covered by mandated nationwide insurance.
d) People with low educational status: patients who received assistance to die were likely to be of equal or higher educational status than average.
e) The poor: recipients of assistance in dying were less likely to be poor
f) The physically disabled or chronically ill: people who are physically disabled or chronically ill but are not terminally ill or, under the Dutch guidelines, seriously ill are not more likely to use assisted dying legislation.
g) Minors (under 18s): a medically assisted death for mature minors is only legal in the Netherlands; the rates were too low to be statistically valid.
h) People with psychiatric illnesses, including depression and Alzheimer's disease: there is no evidence that depressed patients are at a higher risk for receiving assistance under the Oregon Death with Dignity Act. Although the Dutch law permits assisted dying for people with psychiatric illnesses under certain circumstances, this occurs very rarely in practice.
i) Racial or ethnic minorities: in Oregon, 97% of people who used assisted dying legislation were white; Dutch mortality statistics do not include information about race or ethnicity.
The only group where a disproportionate use of assisted dying legislation was found was that of people with AIDS. However AIDS patients represent only 2% of the deaths under the Oregon Death with Dignity Act.
Conclusion:
The researchers concluded that no evidence was found to justify the grave concerns about the negative impact of assisted dying legislation on potentially vulnerable groups. The study clearly shows that there is no factual support for the slippery slope concerns as expressed by opponents of a change in the law.
Full reference:
Battin MP, van der Heide A, Ganzini L, van der Wal G, Onwuteaka-Philipsen BD, 'Legal physician-assisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in vulnerable groups', J Med Ethics 2007, 33: 591-597.
Ganzini and Dobscha (published in 2004)
Objective:
To provide a further analysis of the study performed by Tolle and colleagues (study explained on p12).
Scope:
Oregon
Conclusion:
An intriguing finding by Tolle and colleagues was that there were no reports of assisted suicide outside the law. Although it is unclear how well the interviews would have detected additional illegal assisted suicide or how willing family members who had assisted in a suicide would have been to participate in the study, it is worth noting that this would represent a rate of assisted suicide lower than found in previous studies done in other states.
Emanuel and co-authors (L.L. Emanuel, 'Attitudes and Desires Related to Euthanasia and Physician-Assisted Suicide Among Terminally Ill Patients and Their Caregivers', Journal of the American Medical Association 284 (2000): 2460-68) estimate a rate of PAS and euthanasia in other states in the United States as approximately one in 250, as compared to Oregon's yearly rate of one in 1,000 PAS deaths under the ODDA. If the rate in Oregon is similar to other states in the United States, approximately three in 1,000 cases of PAS or euthanasia in Oregon outside the law each year should be found.
This raises the interesting question of whether legalization of assisted suicide can drive the rate of PAS down. How might legalization have this paradoxical effect?
* First, when physicians understand the law and the safeguards, they may become less willing to act outside such a safe harbour; they report a magnified sense of scrutiny.
* Second, the law's safeguards may be such substantial hurdles that patients simply don't make it over them. Family members reported in the study conducted by Tolle and colleagues that starting the process too late was an impediment to receiving PAS.
* Third, the now-ingrained response among Oregon physicians of referring a patient to hospice when the patient requests PAS may actually ameliorate the need for euthanasia and assisted suicide.
* Finally, Quill points out that one advantage of legalized PAS is that it invites patients to share their concerns and fears, giving the physician the opportunity to intervene.
Whatever the reason, these data do not support the allegation of a slippery slope of increasing death-hastening acts - within or outside the law.
Full reference:
Ganzini L, Dobscha SK, 'Clarifying Distinctions between Contemplating and Completing
Physician-Assisted Suicide', JME 2004, 15(2), 119-122.
See also: Ganzini L, "Back A (2003) From the USA: Understand requests for physician-assisted death." Palliat Med 2006, 17(2): 113-114 - discussed on p14.
Despite claims by opponents that assisted dying legislation would have a negative impact on palliative care provision, evidence shows that the development of palliative care and the introduction of assisted dying legislation are mutually reinforcing:
Jan Bernheim article (published in 2008)
Objective:
This study aims to analyse the effect of the process of legalisation of euthanasia on palliative care and vice versa in Belgium.
Scope:
Belgium
Design:
The effect of the process of legalisation of euthanasia on palliative care, and vice versa, in Belgium are examined by reviewing the published historical, regulatory, and epidemiological evidence in Belgium.
Findings:
* Palliative Care and the legalization of euthanasia are widely viewed as antagonistic societal developments and causes.
* In Belgium, advocates for legalisation of euthanasia worked in palliative care and vice versa.
* In Belgium, all indicators suggest that the movement for legalisation of euthanasia promoted the development of palliative care and that the existence of adequate palliative care made the legalisation of euthanasia ethically and politically acceptable.
* Belgium has some of the best-developed provisions for palliative care, third only to Iceland and the UK.
Conclusion:
In conclusion, this study shows that the development of palliative care and the process of legalisation of euthanasia can be reciprocally reinforcing.
Full reference:
Bernheim J L, Deschepper R, Distelmans W, Mullie A, Bilsen J, Deliens L, 'Development of palliative care and legalisation of euthanasia: antagonism or synergy?' BMJ 2008, 336: 864-867.
Study in six European countries (published in 2003):
Objective:
This study aimed to investigate the frequency and characteristics of end-of-life decision making practices in six European countries: Belgium, Denmark, Italy, the Netherlands, Sweden, and Switzerland.
Scope:
Belgium, Denmark, Italy, the Netherlands, Sweden and Switzerland.
Design:
In all participating countries, doctors who had reported deaths to death registries received a mailed questionnaire about the medical decision-making that had preceded the death of the patient. All deaths arose between June, 2001, and February, 2002.
Findings:
* Death happened suddenly and unexpectedly in about a third of cases in all countries.
* The proportion of deaths that were preceded by any end-of-life decision ranged between 23% (Italy) and 51% (Switzerland).
* Doctor-assisted dying was reported in all countries, but the proportion ranged from about 1% or less in Denmark, Italy, Sweden, and Switzerland, to 82% in Belgium and 40% in the Netherlands.
* Voluntary euthanasia was recorded to take place most frequently in the Netherlands (59%); no cases were reported in Sweden.
* Ending of life without the patient's explicit request (non-voluntary euthanasia) happened more frequently than voluntary euthanasia in all countries apart from the Netherlands; this type of doctor-assisted death was the only one recorded in Sweden (0ยท23% of all deaths).
* Alleviation of pain or symptoms, while taking into account or appreciating hastening of death as a possible side-effect, happened much more frequently than doctor-assisted dying in all countries. The proportion of deaths that were preceded by such an act was lowest in Italy (19%) and highest in Denmark (26%).
* Frequency of non-treatment decisions was also much higher than doctor-assisted dying in most countries, but varied more: such decisions were made in 4% of all deaths in Italy, about 14% in Belgium, Denmark, and Sweden, 20% in the Netherlands, and 28% in Switzerland.
* Large variations were recorded in the extent to which decisions were discussed with patients, relatives, and other caregivers. When patients were competent, the end-of-life decision was discussed with the patient and relatives most frequently in the Netherlands and least frequently in Italy and Sweden. For incompetent patients, the proportion with whom the decision was discussed or who had previously expressed a wish was highest (34%) in the Netherlands and Switzerland, and the decision was discussed with relatives most frequently in the Netherlands (85%) and Belgium (77%). In Italy and Sweden, more than 50% of all end-of-life decisions, whether for competent or incompetent patients, were discussed with neither the patient nor with relatives.
* Doctors consulted colleagues about their end-of-life decisions for about 40% of all patients in the Netherlands, Belgium and Switzerland, and for fewer than 20% in the other countries.
Conclusion:
* There is a large variation in the type and rate of end-of-life decisions per country.
* The extent to which end-of-life decisions were discussed with patients, relatives and colleagues was highest in the Netherlands and Belgium, the countries where assisted dying legislation has been introduced.
Full reference:
van der Heide A, Deliens L, Faisst K et al,'End-of-life decision-making in six European countries: descriptive study', The Lancet 2003, 362(9381): 345-350.
Seale article on discussions with patients, relatives and colleagues (published in 2006)
Objective:
The aim of the study is to assess the extent to which UK doctors discuss end-of-life decisions (ELDs) with patients, relatives and colleagues.
Scope:
Australia, Belgium, Denmark, Italy, the Netherlands, Sweden and Switzerland, United Kingdom and Australia.
Design:
Postal survey of 857 UK medical practitioners. Comparison of UK data with published data from other countries, permissive and not permissive of medical involvement in actively hastening death.
Findings:
* Doctors in permissive countries are significantly more likely, than doctors in non-permissive countries, to say that they discussed decisions with patients and relatives. Conversely, doctors in non-permissive countries are significantly more likely to indicate that they discussed their decision with neither patient nor relative.
* When compared with doctors in non-permissive countries, UK doctors are more likely to have discussed the decision with the patient or with relatives. This suggests that, although the UK is a non-permissive country, UK doctors do not share the same level of reluctance of doctors in such countries to discuss decisions with patients and relatives.
* However, UK doctors fall short of those in permissive countries in overall willingness to discuss decisions, and in willingness to discuss with relatives. Thus, the UK is somewhere between permissive and non-permissive countries in the openness with which decisions are discussed with patients and relatives.
* Doctors in permissive countries are more likely, than those in non-permissive countries, to say that they discussed their decision with other doctors and with nurses. UK doctors are similar to the doctors in permissive countries in this respect, even exceeding them in the proportion reporting discussions with medical colleagues.
Conclusion:
* Willingness to discuss ELDs with patients and relatives is relatively high in the UK, but not as high as in permissive countries. UK doctors are highly likely to discuss ELDs with colleagues, and are more likely to do this than doctors in other countries, whether these countries are permissive or not.
* This study confirms that doctors in permissive countries (Netherlands, Belgium, Switzerland) are more willing to discuss end-of-life decisions with patients & relatives than in non-permissive countries.
Full reference:
C. Seale, 'Characteristics of end-of-life decisions: survey of UK medical practictioners', Palliative Medicine 2006; 20: 653 ? 659.
Cross European study (published in 2007)
Objective:
This paper reports the extent to which physicians in Australia, Belgium, Denmark, Italy, the Netherlands, Sweden and Switzerland discuss topics relevant to end-of-life care with terminally ill patients and their relatives.
Scope:
Australia, Belgium, Denmark, Italy, the Netherlands, Sweden and Switzerland.
Design:
A questionnaire with structured questions was posted to practising physicians in the seven participating countries.
Findings:
* The topics that were least discussed between physicians and patients were options to hasten the end of life and spiritual/existential issues. In all countries, 6% or less of the physicians 'in principle, always' discuss options for hastening the end of life, except for the Netherlands (32%).
* Dutch and Danish physicians were the least likely, to talk to relatives without first informing the patient.
* While it is hardly surprising that physicians who have had palliative care training are significantly more likely than those who have not to discuss emotional, social and spiritual issues and palliative care options with patients, as well as emotional and social problems with relatives, it is perhaps less expected that they would be significantly more likely to discuss with patients options to hasten the end of life. This finding may relate to the patient-centred tradition of palliative care, which may allow patients to discuss their wishes or concerns.
* It is sometimes argued that where euthanasia is available, palliative care and spiritual issues receive less attention; it is therefore notable that the nursing home specialty group in the Netherlands was the most likely to discuss spiritual/ existential issues and palliative care options with patients.
Conclusion:
* The Netherlands, which was the only country with assisted dying legislation at the time this piece of research was conducted, scores very high on having open discussions with patients about palliative care options as well as about hastening death; and in general is very strong in informing patients.
* Physicians in most of the countries except Italy 'in principle, always' discuss issues related to terminal illness with their patients but not with patients' relatives without first informing the patient, unless the relatives ask.
* The majority of physicians appeared to support the principle of patient-centred care to terminally ill patients, consistent with palliative care philosophy and with the law and/or professional guidelines in most of the countries studied.
Full reference:
Colleen Cartwright, Bregje D. Onwuteaka-Philipsen, Gail Williams, Karin Faisst, Freddy Mortier, Tore Nilstun, Michael Norup, Agnes van der Heide and Guido Miccinesi, 'Physician discussions with terminally ill patients: a cross-national comparison', Palliat Med 2007; 21; 295.
Ganzini article (published in 2001):
Ganzini article (published in 2001)
Objective:
The aim of the study was to examine Oregon physicians? attitudes towards and practices regarding the care of dying patients since the introduction of the ODDA.
Scope:
Oregon
Design:
Questionnaires were mailed to Oregon physicians eligible to prescribe under the Act.
Findings:
* One third of respondents reported they had increased their referrals to hospice.
* 76% reported they had made efforts to improve their knowledge of the use of pain medication in terminally ill people.
* 69% reported they had sought to improve their recognition of psychiatric disorders, such as depression.
* 79% reported that their confidence in the prescribing of pain medications had improved.
* In general, physicians were confident in the care of dying patients, felt competent in communicating with dying patients and reported they rarely avoided dying patients.
Conclusion:
Most Oregon physicians who care for terminally ill people report that since the passage of the ODDA, they have made efforts to improve their ability to care for these patients and many have had conversations with patients about assisted suicide.
Full reference:
Ganzini et al, 'Oregon Physician's attitudes about and experiences with end-of-life care since the passage of the Oregon Death with Dignity Act', JAMA 2001, 285;18, 2363-2369.
Goy et al, Oregon (published in 2003):
Objective:
The aim of the study was to obtain hospice nurse and social workers' ratings of efforts made by Oregon physicians to improve their palliative care skills over the previous 5 years.
Scope:
Oregon
Design:
A descriptive survey of nurses and social workers from all 50 Oregon out-patient hospice agencies.
Findings:
* Hospice professionals generally characterized Oregon physicians as having more interest and greater competence in caring for hospice patients than they had 5 years earlier.
* An overwhelming majority said physicians were more willing to refer to hospice over the previous 5 years.
* Oregon hospice nurses and social workers also described their physician colleagues as more willing to prescribe sufficient pain medications for hospice patients relative to 5 years earlier.
* Three quarters of the respondents viewed Oregon physicians as more knowledgeable about using pain medications in hospice patients.
* However, when asked whether Oregon physicians had changed over the last 5 years in their fearfulness of prescribing sufficient opioid medications, 47% of the respondents indicated that they viewed physicians as less fearful today. However, 26% of the respondents marked that they viewed physicians as more fearful than they were 5 years earlier.
* Overall, 51% supported or strongly supported the ODDA, 14% neither supported nor opposed the Act, and 34% opposed the ODDA.
Conclusion:
The majority of hospice nurses and social workers noted positive changes in the provision of palliative care by physicians since the introduction of the ODDA, except for the level of fearfulness of prescribing opioid medications.
Full reference:
Goy et al, 'Oregon hospice nurses and social workers' assessment of physician progress in palliative care over the past 5 years', Palliative and Supportive Care 2003, 1, 215-219.
Opponents often cite that a 'right to die' becomes a 'duty to die'. It is important to examine the real motives of people requesting an assisted death:
Tolle article (published in 2004)
Objective:
The aim of the study was to determine the prevalence of PAS support, PAS consideration and PAS requests in a population of recently deceased Oregonians for whom legal PAS was an option. In addition, the researchers sought to determine which features predict those most likely to consider PAS, to understand better why some who consider PAS do not follow through with a formal request, and to discover why some who make a formal request do not obtain or use the lethal prescriptions they requested.
Scope:
Oregon
Design:
The researchers selected a systematic monthly random sample of Oregon death certificates for deaths from June 2000 to March 2002, which matched the patient population eligible for PAS. They also conducted telephone interviews with family caregivers (from two to five months after a family member's death).
Findings:
* According to family caregivers, 236 decedents (17 percent) personally considered PAS as an option during their terminal illnesses.
* Twenty-five patients (2 percent) formally requested a lethal prescription from a physician in accordance with the ODDA but none of the patients actually died by making use of this lethal prescription.
* No unreported cases of PAS were identified through this epidemiologic study of community-based deaths in Oregon.
* This study confirmed that, regardless of legalization, many more people consider PAS than follow through with it.
* Rates of PAS consideration for study patients in Oregon were about the same as for those dying in states where PAS is illegal.
* Family interviews indicate that dying patients were about nine times more likely to personally consider PAS than to make a formal request to start the process, and nearly 200 times more likely to consider it than to follow through with obtaining a lethal prescription.
* Oregon physicians indicate that about one in 10 patients who make a request for PAS receive, and ultimately take, a lethal prescription. Families in this study reported a lower rate, as only one of 25 patients who made a formal request received a lethal prescription.
* Those who considered PAS also were reported to experience a higher number of symptoms, with pain and sadness most strongly associated with PAS consideration. However, pain has not been commonly reported in those who move beyond consideration to ultimately take a lethal prescription. Physician reports about the 171 Oregonians who used PAS cited concerns about autonomy far more frequently than pain as motivation for the patient?s decision, indicating that those who follow through with PAS may have different motives from those who merely consider PAS.
Conclusion:
* This study confirmed that, regardless of legalization, many more people consider PAS than follow through with it. This confirms that many people are comforted by the thought of having the choice available to them, but this doesn't mean that they will also actually make use of it.
* The motives of people who merely consider PAS and those who follow through with it also differ considerably.
* This study found no evidence of unreported cases of PAS.
Full reference:
Tolle SW, Tilden VP, Drach LL, Fromme EK, Perrin NA, Hedberg K, 'Characteristics and Proportion of Dying Oregonians Who Personally Consider Physician-Assisted Suicide', JME 2004, 15(2), 111-118.
Pearlman article (published in 2005)
Objective:
The aim of the study was to obtain detailed narrative accounts of patients' motivations
for pursuing physician-assisted suicide (PAS).
Scope:
United States
Design:
Five investigators conducted 159 interviews with 60 participants concerning 35 patients between April 1997 and March 2001. Participants were recruited through advocacy organizations that counsel individuals interested in PAS, as well as hospices and grief counselors. Researchers then conducted a content analysis of the conducted interviews to characterize the issues associated with pursuit of PAS.
Findings:
The most commonly cited reasons for considering PAS were:
a) Feeling weak, tired, and uncomfortable
b) Pain and/or unacceptable side effects of pain medications
c) Loss of function (two thirds of participants)
d) Loss of sense of self (two thirds of participants): people were concerned about how dying was eroding their sense of self. Patients expressed concern about losing their personality, 'source of identity', or 'essence'. Without the ability to maintain aspects of their life that defined them as individuals, life lost its meaning and personal dignity was jeopardized.
e) Desire for control: in 21 cases, the patient?s desire for a hastened death was linked to a long-standing sense of independence and desire to maintain control over future events.
f) Fears about future quality of life and dying
Conclusion:
Patients in this study engaged in PAS after a deliberative and thoughtful process. Most patients were motivated to engage in PAS due to illness-related experiences (e.g., fatigue, functional losses), a loss of their sense of self, and fears about the future. None of the patients were acutely depressed when planning PAS. The cases also illustrate that pain is often not the most salient motivating factor.
Full reference:
Pearlman RA, Hsu C et al., 'Motivations for Physician-assisted Suicide - Patient and Family Voices', JGIM 2005, 234-239.
Back article (published in 2002):
Objective:
The aim of the study was to describe qualities of clinician-patient interactions about requests for PAS that were valued by patients and their family members.
Scope:
United States
Design:
Intensive qualitative case study involving multiple longitudinal interviews conducted prospectively with patients pursuing PAS and their family members and retrospectively with family members of deceased patients.
Findings:
* Patients and family members highly valued clinicians who were willing and open to discussing PAS. When they encountered a clinician who was willing to discuss PAS, they felt able to disclose many concerns about dying.
* The value of clinicians being open to discussing PAS went beyond this topic alone. Patients felt that a clinician willing to talk about PAS might also be willing to discuss other worries, fears and vulnerabilities about illness and dying.
* Another important type of clinician expertise was the ability to describe the natural history of illness and care options in the last days of life.
* Another valued type of clinical expertise was defining reasonable expectations about dying and then delivering the care necessary to fulfil those expectations.
* The expertise in individualizing pain control to meet patient goals was also very highly valued.
Conclusion:
The best outcome for patients and their families is when the physician is willing to discuss all of a patient's concerns and requests, including any request for help to die.
Full reference:
Back, AL., Starks, HM., Hsu, C., Gordon, JR., Bharucha, A., and Pearlman, RA., 'Clinician-patient interactions about requests for PAS: A patient and family view', Archives of Intern Med 2002; 16 (2): 1257-1265.
Despite the claims of opponents, there is no evidence that medically assisted dying legislation has an adverse effect on the medical profession or the patient-doctor relationship:
Kmietovicz article (published in 2002)
An inquiry by the BMJ covering seven countries shows that, in most places, respect for doctors is extremely high and has not altered noticeably over the past 10 years.
But out of all the countries the researchers found surveys for, it was Dutch patients who found it hardest to fault their doctors, especially GPs.
This demonstrates that the legalisation of assisted dying has not badly affected patients' trust in their doctor.
Full reference:
Kmietovicz Z, 'R.E.S.P.E.C.T.' why doctors are still getting enough of it?, BMJ 2002, 324, 11.
Research conducted in the United States (published in 2005)
Objective:
The aim of the study was to determine whether or not legalising physician aid in dying would undermine patient trust in the United Stated States.
Design:
A random national sample of 1117 US adults were asked about their level of agreement with a statement that they would trust their doctor less if 'euthanasia were legal [and] doctors were allowed to help patients die?'.
Findings:
* 58% of the participants said that euthanasia would not cause them to trust their personal physician less. Only 20% said legalising euthanasia would cause them to trust their personal physician less. The remainder of the respondents (22%) were neutral.
* 27% of elderly people (age 65+) and 32% of black people thought that physician aid in dying would lower trust.
* Overall views in most of these subgroups were positive. Views about the effect of physician-assisted dying on trust were significantly correlated with participants? underlying trust in their physicians and their satisfaction with care.
Conclusion:
Despite the widespread concern that legalising assisted dying would seriously threaten or undermine trust in physicians, the weight of the evidence in the USA is to the contrary.
Full reference:
Hall M, Trachtenberg F, Dugan E, The impact on patient trust of legalising physician aid in dying, J Med Ethics 2005;31:693-697.
Despite the opposition to a change in the law to allow for assisted dying, there is clear evidence that assisted dying is already going on in practice:
Seale study (published in 2006):
Objective:
This study was aimed at exploring the frequency and proportion of different ELDs made by UK medical practitioners.
Scope:
UK
Design:
A random sample of 1000 GPs and 1000 hospital specialists of all working UK medical practitioners were sent questionnaires, with two follow-up reminders between October and December 2004. Specialities where doctors could not be expected to have attended a death in the previous year were excluded.
Findings:
The type and frequency of end-of-life decisions made by medical practitioners were the following:
* voluntary euthanasia: 0.16%
* physician-assisted suicide: 0.00%
* ending life without an explicit request from patient: 0.33%
* alleviation of symptoms and pain with possible life-shortening effects: 32.8%
* non-treatment decisions (withholding or withdrawal of treatment): 30.3%
This means that of all deaths in the UK, 0.49% are the consequence of assisted dying practices.
In absolute figures, his findings mean that cases of voluntary euthanasia in the UK in 2004 amounted to 936 cases and cases of ending life without an explicit request (non-voluntary euthanasia) amounted to 1,930 cases. This means that 2,866 people received assistance to die, with or without their explicit request, outside any applicable legal framework.
Conclusion:
This piece of research confirms that end-of-life decisions with a possible life-shortening effect are being made on a large scale and without any transparency.
Full reference:
Seale C, 'National survey of end-of-life decisions made by UK medical practitioners', Palliat Med 2006, 20(1): 3-10.
Ward and Tate study (published in 1994)
Objective:
The objective of this study was twofold. First, Ward and Tate wanted to explore NHS doctors' attitudes to competent patients' requests for assisted dying and, secondly, to estimate the proportion of doctors who have taken active steps to hasten a patient's death.
Scope:
UK
Design:
All in all only 221 general practitioners and 203 hospital consultants were subjected to anonymous postal questionnaires and only 273 doctors actually responded to a question on whether a patient had ever asked them to hasten death.
Findings:
* Of these 273 doctors, 163 had actually been asked to hasten death.
* 124 of these 163 had been asked to take active steps to hasten death through assisted dying.
* 38 of 119 respondents had complied with such a request. This proportion represented 12% of all those who returned a completed questionnaire.
Conclusion:
* This study implies that a sizeable proportion of doctors are asked by patients to hasten their deaths; 60% in this study.
* Despite the illegality of it, 12% of doctors reported that they had taken active steps to comply with a request for an assisted death.
Full reference:
Ward BJ, Tate PA, 'Attitudes among NHS physicians to requests for euthanasia', BMJ 1994, 308: 1332-1334.
McLean study (published in 1996)
Objective:
The aim was to ascertain medical practitioners' attitudes towards physician-assisted suicide. The survey also asked questions as to whether or not respondents had had experiences of their own with regard to this practice.
Scope:
UK
Design:
A postal survey of doctors and pharmacists.
Findings:
* 60% of the sample had treated a patient who was considering suicide and 28% had been asked to provide the means for a patient to kill themselves.
* 12% said they personally knew another health professional who had assisted a patient to kill him or herself, and 4% said they had provided the means (such as drugs or information about lethal acts) to assist patients to kill themselves.
Conclusion:
Of the 1000 doctors and pharmacists who participated, 4% admitted having helped a patient to die and 12% believed their colleagues had done so.
Full reference:
McLean S, Britton A. Sometimes a small victory. 1996. Institute of Law and Ethics in Medicine, University of Glasgow. Scottish County Press Ltd.
The Netherlands is sometimes cited as an example of the so-called 'slippery slope' in action. However, there is no evidence to support those claims:
Van der Heide study (published in 2007)
Objective:
To measure the frequency of euthanasia, physician-assisted suicide, and other end-of-life practices in the Netherlands.
Scope:
The Netherlands
Design:
The researchers mailed questionnaires to physicians attending 6860 deaths that were identified from death certificates. The response rate was 77.8%.
Findings:
* In 2005, of all deaths in the Netherlands, 1.7% were the result of euthanasia and 0.1% were the result of physician-assisted suicide.
* These percentages were significantly lower than those in 2001, when 2.6% of all deaths resulted from euthanasia and 0.2% from assisted suicide. Of all deaths, 0.4% were the result of the ending of life without an explicit request by the patient.
* When life was ended without the explicit request of the patient, there had been discussion about the act or a previous wish of the patient for the act in 60.0% of patients, as compared with 26.5% in 2001. The main reasons for not discussing with the patient were unconsciousness (10.4%) or incompetency owing to young age (14.4%). Of all cases of the ending of life in 2005 without an explicit request by the patient, 80.9% had been discussed with relatives. In 65.3% of cases, the physician had discussed the decision with one or more colleagues.
* Continuous deep sedation was used in 7.1% of all deaths in 2005, significantly increased from 5.6% in 2001.
* Before end-of-life decisions were made, physicians discussed euthanasia and assisted suicide with all patients whose death was caused by either act. The physician also discussed the decision to perform euthanasia or assisted suicide with relatives of the patient in 75.5% of deaths in 2005 and with one or more colleagues in 87.7% of deaths.
* In 2005, 80.2% of all cases of euthanasia or assisted suicide were reported. Reporting of cases has risen sharply, from 54% to 80%. Most of the unreported cases involved the use of morphine, and doctors did not perceive their actions to be necessarily 'life ending.' The researchers used responses to confidential questionnaires to estimate the number of unreported cases.
Conclusion:
Research shows that the number of people having a medically assisted death in the Netherlands is actually falling. The number of people having a medically assisted death in 2005 was significantly lower than the number of people using the Act in 2001.
Full reference:
van der Heide A, Onwuteaka-Philipsen BD, Rurup ML et al, 'End-of-Life Practices in the Netherlands under the Euthanasia Act', N Eng J Med 2007, 356(19):1957-1965.
Rietjens et al, continuous deep sedation (published in 2008)
Objective:
To study the practice of continuous deep sedation in 2005 in the Netherlands and compare it with findings from 2001.
Scope:
The Netherlands
Design:
Questionnaire study about random samples of deaths reported to a central death registry in 2005 and 2001.
Findings:
* The use of continuous deep sedation increased from 5.6% of deaths in 2001 to 7.1% in 2005, mostly in patients treated by general practitioners and in those with cancer (in 2005, 47% of sedated patients had cancer v 33% in 2001).
* In 94% patients were sedated for periods of less than one week until death.
* Nine per cent of those who received continuous deep sedation had previously requested euthanasia but their requests were not granted.
* Nine per cent of the physicians had consulted a palliative expert.
* The researchers concluded that the increased use of continuous deep sedation for patients nearing death in the Netherlands and the limited use of palliative consultation suggests that this practice is increasingly considered as part of regular medical practice. More research is needed in this area.
* For 47% of all patients who received continuous deep sedation, the sedation was started in the last 24 hours before death. In two thirds, physicians estimated that the effect of the decision making before death on shortening life was 24 hours or less.
Conclusion:
* Physicians and medical authorities have paid more attention to continuous deep sedation and knowledge has increased.
* Continuous deep sedation has possibly increasingly been used as a relevant alternative to euthanasia. The use of euthanasia had decreased from 2.6% of all deaths in 2001 to 1.7% of all deaths in 2005 (a decrease of 1200 cases), 19 while continuous deep sedation increased by 1800 cases from 5.6% to 7.1%. This increase took place mostly in the subgroups in which euthanasia is most common: patients attended by general practitioners and those with cancer. This is in line with the finding that many Dutch physicians have been found to consider high quality end of life care as an alternative to euthanasia.
* For patients with a longer life expectancy, there is a risk that labeling the decision as continuous deep sedation instead of ending of life might serve as a way to evade the procedural requirements for euthanasia. Our study shows, however, that the estimated effect on life shortening was, in most cases, limited.
* Future studies about medical practices at the end of life should evaluate this in more detail.
Full reference:
Judith Rietjens, Johannes van Delden, Bregje Onwuteaka-Philipsen, Hilde Buiting, Paul van der Maas and Agnes van der Heide, Continuing deep sedation for patients nearing death in the Netherlands: a descriptive study, BMJ 2008, 336, 810-813.

























