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J Pereira Legalizing Euthanasia Essay

5. Oregon

The most important evidence for practice in Oregon is provided by annual reports on the Death with Dignity Act.  This section also highlights some aspects that been raised in relation to Oregon practice but are not based on the reports.  See also research on the impact of assisted suicide on suicide prevention (section 10, below).

According to the official Oregon report, the most frequent end of life concern cited by people requesting assisted suicide is not pain but ‘loss of autonomy’ (91.5%), followed by decreased ability  ‘to engage in activities making life enjoyable’ (88.7%), ‘loss of dignity’ (79.3%), ‘losing control of bodily functions’ (50.1%) and ‘burden on family, friends/caregivers’ (40%), and only then ‘inadequate pain control or concern about it’ (24.7%), (in each case citing accumulated data for 1998-2013).  Evidently most of these concerns relate to disability and dependence.  The concern about feeling one is a ‘burden’ on others is significant, much more so than fear of pain (which, also, should not be conflated with actual pain).

From the same report it is clear that in only 15.7% of cases was the prescribing physician present at the time of death (only 13.9% in 2014), that only 5.5% were referred for psychiatric evaluation (only 2.9% in 2014), and that in 38.3% of cases the person was dependent on Medicare/Medicaid insurance or other governmental insurance (up to 60.2% in 2014).

According to Oregon’s Prioritized List of Health Services 2015 cancer treatment is limited according to relative life expectancy, for example, ‘treatment with intent to prolong survival is not a covered service for patients who have progressive metastatic cancer...’(Guidance Note 12).  In contrast ‘It is the intent of the Commission that services under ORS 127.800-127.897 (Oregon Death with Dignity Act) be covered for those that wish to avail themselves to those services’ (Statements of Intent Page 1).

[NB The Statements of Intent and Guidance Notes come after the 103 pages of the prioritized list]

Health Evidence Review Commission, Prioritized List of Health Services (1 January 2015).

It should be noted that the drugs that are used for assisted suicide are also used in execution by lethal injection in the United States.  This dual use is causing availability problems with supply of the drugs.

N Jaquiss ‘Penalized By The Death Penalty’ Willamete Week 21 May 2014

A good overview of practice in Oregon, including some case studies as well as statistical evidence, shows problems with doctor shopping, suspect coercion and lack of sufficient psychiatric evaluation. 

H Hendin and K Foley, ‘Physician-assisted suicide in Oregon: a medical perspective.’ Michigan Law Review, 2008: 1613-1639.*[full text available]

Kenneth Stevens has shows that from 2001 to 2007 a majority (61%, 165 out of 271) of the lethal prescriptions were written by a minority (18%, 20 out of 109) of the participating physicians.  More striking still, just 3 physicians were responsible for 23% of lethal prescriptions (62 out of 271).[1]

KR Stevens ‘Concentration of Oregon's Assisted Suicide Prescriptions & Deaths from a Small Number of Prescribing Physicians’ Physicians for Compassionate Care Educational Foundation 18 March 2015.

See also ‘Five Oregonians to Remember’ PCCEF, 27 December 2007.


[1] I am grateful to Dr Robert Twycross for bringing this online article to my attention.

 

6. Switzerland

Assisted suicide in Switzerland is performed almost entirely through organisations such as EXIT and Dignitas.  Since 1982 (when EXIT was founded) there has been only one official government report, in 2012, and this is dependent on data provided by assisted suicide organisations.  Media reporting of UK citizens dying in Switzerland play a significant role in the UK debate, but it should be noted that most of those individuals would not qualify under current proposals for ‘Assisted Dying’ , as they were not expected to die within six months. If the law changed in the UK either people would continue to go to Switzerland (which would have fewer restrictions) or the option of assisted suicide in Switzerland would place pressure on the UK to extend its practice to those who are not terminally ill. Research on the experience of assisted suicide in Switzerland is not reassuring.

A systematic study of 43 consecutive cases of assisted suicide in Switzerland from 1992 to 1997 found that in 10 cases (23%), the time between first contact with EXIT and the completed assisted suicide was less than a week and in 4 cases (9%) it was less than a day.  In 6 cases (14%) the person had previously been treated in a psychiatric institution.  In 11 cases (26%) there was no serious medical condition recorded on file, and in 5 cases (12%) the stated reason for seeking assisted suicide was bereavement.  The authors of the study conclude that in the 1990s assisted suicide was ‘performed by lay-people who act without outside control and violate their own rules.’.

Frei, Andreas, et al. ‘Assisted suicide as conducted by a “Right-to-Die”-society in Switzerland: a descriptive analysis of 43 consecutive cases.’ Swiss Medical Weekly 131.25-26 (2001): 375-380.*[full text available] 

A later study found that between 1990s and 2001-2004 the rate of assisted suicide for non-fatal diseases increased from 22% to 34% and concluded that ‘weariness of life rather than a fatal or hopeless medical condition may be a more common reason for older members of Exit Deutsche Schweiz to commit suicide’.

Fischer, S., Huber, C. A., Imhof, L., Imhof, R. M., Furter, M., Ziegler, S. J., & Bosshard, G. (2008). ‘Suicide assisted by two Swiss right-to-die organisations’. Journal of medical ethics, 34(11), 810-814.*[full text available] 

A study in 2014 found that assisted suicide in Switzerland was associated with living alone and divorce and was significantly more frequent among women.  In 16% of deaths by assisted suicide no medical condition was listed.

Steck, N., Junker, C., Maessen, M., Reisch, T., Zwahlen, M., & Egger, M. (2014). ‘Suicide assisted by right-to-die associations: a population based cohort study’. International journal of epidemiology, 43(2), 614-622.*[full text available]

Research on trends from 1991 to 2008 showed ‘a tripling of assisted suicide rates in older women, and the doubling of rates in older men.’.

Steck, Nicole, Marcel Zwahlen, and Matthias Egger. ‘Time-trends in assisted and unassisted suicides completed with different methods: Swiss National Cohort.’ Swiss Med Wkly 145 (2015): w14153.*[full text available]

The most recent figures by EXIT shows 583 deaths by assisted suicides in 2014, up 124 (27%) from 2013

Research showed that requests for assisted suicide were based not on symptom burden but on fear of loss of control. Moreover, those seeking assisted suicide had misconceptions about palliative care.

Gamondi, C., M. Pott, and S. Payne. ‘Families' experiences with patients who died after assisted suicide: a retrospective interview study in southern Switzerland.’ Annals of oncology 24.6 (2013): 1639-1644.*[full text available]

Until 2006 assisted suicide had not occurred in Switzerland in a hospital setting.  The difficulties of introducing it into hospital and the concerns of the palliative care team are set out below.

Pereira, J., et al. ‘The response of a Swiss university hospital’s palliative care consult team to assisted suicide within the institution.’ Palliative medicine 22.5 (2008): 659-667.*[full text available]

There is also research from Switzerland on the negative impact on family members of witnessing assisted suicide.

Wagner, Birgit, J. Müller, and A. Maercker. ‘Death by request in Switzerland: Posttraumatic stress disorder and complicated grief after witnessing assisted suicide.’ European Psychiatry 27.7 (2012): 542-546.*[full text available]

Assisted suicide in Switzerland is most well known in the UK because of people travelling from the UK to die by assisted suicide.  A detailed study of ‘suicide tourism’ shows numbers are increasing, the proportion of cancer is decreasing and the proportion of mental illness and multiple co-morbidities is increasing.  Among reasons for assisted suicide the largest single cause, with 223 cases, was cancer, but 37 cited Parkinson’s disease, 37 cases gave arthritis as a reason, 14 cases were for mental illness, and 40 cases gave as a reason impairment of eyesight and/or hearing. 

Gauthier, S., Mausbach, J., Reisch, T., & Bartsch, C. (2014). ‘Suicide tourism: a pilot study on the Swiss phenomenon’. Journal of medical ethics, medethics-2014.*[full text available]

 

7. The Netherlands

In addition to annual reports, based on notified cases of euthanasia there have been a series of studies of end of life practices at 5 year intervals since 1990. These were nationwide studies of a stratified sample from the national death registry.  Questionnaires were sent to physicians attending these deaths and were returned anonymously.  The first is commonly termed the Remmelink Report and subsequent reports followed the same pattern.  Both the annual reports and the five yearly studies show incremental increases in deaths by euthanasia over time.  Deaths by assisted suicide are less frequent, in part because they are associated with complications.

The first two reports showed evidence of a number of deaths without explicit patient request (in other words non-voluntary euthanasia).  The rates were 0.8% and 0.7% being equivalent to 1,000 and 900 deaths in per year.  The reaction of supporters was generally to dismiss the significance of these figures, rather than to see them as a possible cause for concern.

Van der Maas, Paul J., et al. ‘Euthanasia, physician-assisted suicide, and other medical practices involving the end of life in the Netherlands, 1990–1995.’ New England Journal of Medicine 335.22 (1996): 1699-1705.*[full text available]

J Keown, ‘Euthanasia in the Netherlands: Sliding down the Slippery Slope’, 9 Notre Dame J.L. Ethics & Pub. Pol'y 407 (1995).*[full text available]

van Delden, Johannes JM, Loes Pijnenborg, and Paul J. van der Maas. ‘Reports from the netherlands. Dances with data.’ Bioethics 7, no. 4 (1993): 323-329.*

Cohen-Almagor, Raphael. ‘Non-voluntary and involuntary euthanasia in The Netherlands: Dutch perspectives.’ Issues in Law and Medicine 18.3 (2003).*

For such reasons the law and practice of euthanasia and assisted suicide in the Netherlands has been criticized twice by the United Nations Human Rights Committee.

UN Human Rights Committee (HRC), UN Human Rights Committee: Concluding Observations: Netherlands, 27 August 2001, CCPR/CO/72/NET

UN Human Rights Committee (HRC), Concluding observations of the Human Rights Committee: Netherlands, 25 August 2009, CCPR/C/NLD/CO/4

Results from the most recent 5 yearly study (published in 2012 and relating to 2010) show that deaths classified as ‘ending life without explicit patient request’ have declined.  However, overall numbers of deaths by euthanasia have risen by more than 60% in five years.  This is not due to increase in reporting (which has declined slightly from the 2005 rate of 80%), but is due to increased numbers of requests and increased percentage of requests accepted.  Another matter of concern is the steep rise in cases of continuous deep sedation (in 2010 12.3% of deaths), which may account for the rise in deaths by ‘intensified alleviation of symptoms’ (from 18.8% of deaths in 1990 to 36.4% of deaths in 2010).  The presence of so many deaths with, or by, continuous deep sedation confounds the data as it may be used as equivalent to euthanasia or to life ending without request. 

Onwuteaka-Philipsen, B. D., Brinkman-Stoppelenburg, A., Penning, C., de Jong-Krul, G. J., van Delden, J. J., & van der Heide, A. (2012). ‘Trends in end-of-life practices before and after the enactment of the euthanasia law in the Netherlands from 1990 to 2010: a repeated cross-sectional survey’. The Lancet, 380(9845), 908-915.*[full text available]

The latest annual report (for 2013) shows that the rate of increase in euthanasia numbers has not slowed, but instead has accelerated.  There were 4,829 deaths by euthanasia or assisted suicide notified in 2013, up 15% on the previous year.  As well as the increase in overall numbers that has been a disproportionate increase in euthanasia for non-terminal diseases, thus in comparison with 2012, euthanasia for multiple geriatric syndromes increased 46% (to 251 cases), euthanasia for dementia increased 130% (to 97 cases), and euthanasia for mental disorders increased 200% (to 42 cases).

This increase in euthanasia or assisted suicide for non-terminal conditions reflects opinion among professionals, with a significant number (between 24% and 39%) in favour of euthanasia or assisted suicide for individuals who experience mental suffering due to loss of control, chronic depression or early dementia.  A third of doctors and 58% of nurses were in favour of euthanasia in the case of severe dementia, given the presence of an advance directive.

Kouwenhoven, Pauline SC, et al. ‘Opinions of health care professionals and the public after eight years of euthanasia legislation in the Netherlands: A mixed methods approach.’ Palliative medicine 27.3 (2013): 273-280.*

Other research shows a wide variation among general practitioners, consultants and members of the euthanasia committees in their judgement of whether the patient’s suffering is sufficient for euthanasia.

Rietjens, Judith AC, et al. ‘Judgement of suffering in the case of a euthanasia request in The Netherlands.’ Journal of Medical Ethics 35.8 (2009): 502-507.*

While euthanasia is defined as ending life on request, the Netherlands has extended life ending without request to newborn infants with disabilities.  A description of the protocol (known as the Groningen protocol) is given by two authors who helped develop this practice.

Verhagen, A. A. E., and P. J. J. Sauer. ‘End-of-life decisions in newborns: an approach from the Netherlands.’ Pediatrics 116.3 (2005): 736-739. *

Lastly, while euthanasia and assisted suicide are requested to secure an easeful death, complications are well documented, especially in assisted suicide.  A study in 2000 found that ‘complications [such as spasm, gasping for breath, cyanosis, nausea or vomiting] occurred in 7% of cases of assisted suicide, and problems with completion [a longer-than-expected time to death, failure to induce coma, or re-awakening of the patient] occurred in 16%’ because of which ‘physicians who intend to provide assistance with suicide sometimes end up administering a lethal medication themselves,’ This is not only a problem of the past, in the 2013 report there were 4,501 cases of euthanasia, 286 cases of assisted suicide and 42 cases involving a combination of the two (i.e. cases which began as assisted suicide, but had to be completed by euthanasia).

Groenewoud, J. H., van der Heide, A., Onwuteaka-Philipsen, B. D., Willems, D. L., van der Maas, P. J., & van der Wal, G. (2000). ‘Clinical problems with the performance of euthanasia and physician-assisted suicide in the Netherlands’. New England Journal of Medicine, 342(8), 551-556.*[full text available]

 

8. Belgium

Though Belgium legalised euthanasia in 2002, eighteen years after the Netherlands (in 1984), it has now overtaken the Netherlands in numbers of deaths.  There were 1,803 reported cases in 2013 (more than double the 822 reported cases in 2009).  According to research conducted by Chambaere (see below) these official figures underreport euthanasia by around 50%. What is more worrying is that research indicates that more than 1,000 patients a year (1.7% of all deaths) have their lives ended deliberately without having requested it.  This figure has not declined with time. 

The Belgium law came to prominence recently with the decision in February 2014 to extend euthanasia to children.  This has caused concern among clinicians and bioethicists in other countries.

AM Siegel, DA Sisti and AL Caplan ‘Pediatric euthanasia in Belgium: disturbing developments.’ JAMA 311.19 (2014): 1963-1964.*

Carter, Brian S. ‘Why Palliative Care for Children is Preferable to Euthanasia.’ American Journal of Hospice and Palliative Medicine (2014): 1049909114542648.*[full text available]

For background to the original 2002 law and its initial implementation see:

R Cohen-Almagor, ‘Euthanasia policy and practice in Belgium: critical observations and suggestions for improvement.’ Issues L. & Med. 24 (2008): 187.*[full text available]

See also a report analysing ten years of euthanasia practice in Belgium.

E de Diesbach, M de Loze, C Brochier and E Montero Euthanasia in Belgium: 10 years on European Institute of Bioethics (April 2012)

Research shows that the cases that are not reported are also less likely to involve a written request, less likely to involve specialist palliative care, and more likely to be performed by a nurse.

Smets, Tinne, et al. ‘Reporting of euthanasia in medical practice in Flanders Belgium: cross sectional analysis of reported and unreported cases.’ British Medical Journal 341 (2010): 5174.*[full text available]

Research on nurses in Belgium in 2007 showed that cases of life-ending without request were almost as common as cases of euthanasia, and that in 12% of euthanasia cases and 45% of life-ending without request it was a nurse who administered the lethal dose, actions which went ‘beyond the legal margins of their profession.’

Inghelbrecht, Els, et al. ‘The role of nurses in physician-assisted deaths in Belgium.’ Canadian Medical Association Journal (2010): 905-910.*[full text available]

On the ongoing issue of high levels of intentional life-ending without consent in Belgium see:

Cohen-Almagor, Raphael. ‘First do no harm: intentionally shortening lives of patients without their explicit request in Belgium.’ Journal of Medical Ethics (2015): medethics-2014.*[full text available]

Research has also shown that, in Belgium, continuous deep sedation is used with the intention or co-intention to shorten life in 17% of cases, but that it is rarely instituted at the request of the patient (only in 12.7% if cases).

Papavasiliou, Evangelia Evie, et al. ‘Physician-reported practices on continuous deep sedation until death: A descriptive and comparative study.’ Palliative medicine (2014): 0269216314530768.*

The most recent research (published in 2015) shows that while rates of euthanasia increase there has been no improvement in reporting and no reduction in cases of life-ending without request.

K Chambaere et al. ‘Recent Trends in Euthanasia and Other End-of-Life Practices in Belgium.’ New England Journal of Medicine 372.12 (2015): 1179-1181.*[full text available]

In the face of evidence of widespread ending of life without request some researches have sought to excuse these actions because a third of such patients had, ‘at some point’ in the past, either explicitly or ‘implicitly’ expressed a wish that their lives be ended.  However, the very attempt to downplay concerns about deaths deliberately brought about without an explicit request itself illustrates the degree to which non-voluntary euthanasia in Belgium is tolerated and is not regarded as shocking or as a practice in urgent need of correction.

Chambaere, K., Bernheim, J. L., Downar, J., & Deliens, L. (2014). ‘Characteristics of Belgian “life-ending acts without explicit patient request”: a large-scale death certificate survey revisited.’ Canadian Medical Association Open Access Journal, 2(4), E262-E267.*[full text available]

On the distinction between expressing a wish to die, a wish to hasten death, and a request, see:

Monforte‐Royo, C., Villavicencio‐Chávez, C., Tomás‐Sábado, J., & Balaguer, A. (2011). The wish to hasten death: a review of clinical studies. Psycho‐Oncology, 20(8), 795-804.*[full text available]

Data from the annual reports shows that an increasing percentage of those dying by euthanasia do not have cancer, but have neuro-psychiatric disorders or the comorbidities of old age.  These cases increased from a combined 41 deaths in 2010 (4.3% of euthanasia that year) to 176 deaths in 2013, (9.7% of euthanasia).

Stories of individual cases are no substitute for quantitative research, but they help show the possible human meaning behind these statistics.  Some illustrative examples are given below.

‘Marc and Eddy Verbessem, Deaf Belgian Twins, Euthanized’ The World’ Post 15 January 2013.

B. Waterfield, ‘Belgian killed by euthanasia after a botched sex change operation’ Telegraph 01 Oct 2013

R Aviv ‘The Death Treatment: When should people with a non-terminal illness be helped to die?’ New Yorker 22 June 2015

E O’Gara ‘Physically healthy 24-year-old granted right to die in Belgium’ Newsweek 29 June 2015

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