Whether doctors should help seriously ill patients to die is controversial from an ethical and legal point of view. Meanwhile medical euthanasia has become legal in more and more countries around the world. Therefore, many fear that the number of cases will increase significantly – and that assistance to die could also be carried out frivolously or abusively.
Currently both euthanasia and assisted suicide are legal in the Netherlands, Belgium, Luxembourg, Canada and Colombia. Whereas with euthanasia the doctor ends the patient’s life by way of targeted administration of drugs, in the case of assisted suicide he or she makes the lethal drug available to the patient only so that the latter then takes it him or herself. In Switzerland and in five US states only assisted suicide is legal – namely in Oregon, Washington, Montana, Vermont and California.
Overall, however, the legal situation is complex – detailed information about individual countries can be found on the German Reference Centre for Ethics in the Life Sciences (DRZE) website.
Data from the years 1947 to 2016
Now a research team has for the first time comprehensively investigated how often euthanasia is being employed and how legalisation has affected the attitude to euthanasia and the numbers of cases. In this study scientists led by Ezekiel J. Emanuel of the Perelman School of Medicine at the University of Pennsylvania (USA) examined all available data on the subject from 1947 to 2016. This data included surveys and studies with physicians and the general population, interviews with doctors, official databases and studies of death certificates (which were carried out in the Netherlands and Belgium since 1990). Their results have now been published in the scientific journal JAMA.
Evaluation of the data showed that euthanasia is overall relatively rarely carried out: in those countries where it is legal, between 0.3 and 4.6 percent of deaths were ascribed to active euthanasia or assisted suicide. 70 percent of patients involved were cancer patients. Nonetheless, the number of cases has increased both in the US as well as in Belgium and the Netherlands since euthanasia was legalised – in the other countries there was insufficient or absence of data.
“It is often assumed that medical euthanasia is widespread. However, the most solid data that we have on this issue is already 15 years old”, says Emanuel. At present discussions are going on in several countries and US states on bills that could legalise such practices. “But at the moment we have no comprehensive knowledge of how such euthanasia practices look and how the public and doctors view the topic”, the researcher says. “We need more data before such measures can be employed as a solution in palliative medicine”.
Endorsement has increased in many countries
Another finding of the study: In both the US and in Europe public support for euthanasia continuously increased from the 1940s until the beginning of the 21st century. In the US in 1947 it amounted to 37 percent, in the 1990s had already reached 66 and in the early 2000s was 75 percent. Since then it has again declined somewhat, namely to 64 percent in 2012. Proponents of euthanasia were preferably male, young, white and belonged to no religious affiliation.
In Europe in well there has been growing approval of euthanasia. Support between 1999 and 2008 increased in most Western European countries, yet declined in many countries in Eastern Europe. Emanuel and his team suspect that this could be related to declining religiosity in Western Europe and increasing religiosity in the former communist countries of Eastern Europe.
Abuse rare – little known about complications
The particular reasons mentioned by those wanting to end their lives were the loss of autonomy and dignity, lack of life satisfaction and other forms of strong psychological stress. Pain, however, was rarely cited as a reason. The majority of patients who request euthanasia were older, male, white and relatively well educated.
Requests for euthanasia in the US states where assisted suicide is legal were received by less than 20 percent of physicians – and less than 5 percent of them have already performed it. This suggests that legalisation does not mean that euthanasia becomes the norm, but rather remains an exception for extreme cases. Furthermore most patients who requested euthanasia were already in palliative care – which suggests that their symptoms were being adequately addressed. Moreover, the results indicate that critical cases – such as life-ending measures for minors or dementia patients – make up only a very small proportion of cases. “Overall, our data suggest that there is no comprehensive abuse of medical euthanasia”, the authors write.
Another matter is a cause for concern: aside from in the Netherlands and the United States, there was no data on the frequency of complications – and even in these countries the reports were often incomplete. There was as such in 40 percent of cases of physician-assisted suicide between 1998-2015 a lack of data regarding complications. When data was available, a prolonged process of dying (lasting more than one day), vomiting of the medication, and seizures were reported as complications.
Questions for the future
Which research queries with respect to euthanasia are now the most important for the future? A team led by Mark Rodgers from the British University of York recently occupied itself for the first time with this question. Researchers interviewed different groups of people who were interested in the topic of euthanasia as to which issues they consider particularly important. These included experts from the areas of health and social care, scientists, civil rights activists and patients as well. A total of 110 groups and individuals were interviewed, with euthanasia advocates and opponents being equally involved. Over 90 percent of respondents were from the United Kingdom – where active euthanasia and assisted suicide are permitted; the rest came from other European countries.
The main research questions emerged: how and why do people choose to end their lives? What factors influence this decision and how does this change over time? How could the quality of life of patients with an incurable disease be improved in the last phase of life? What does “quality of life” exactly mean to them? What does “unbearable suffering” mean to them? Other issues that were mentioned by a majority of the respondents were: are concerns that seriously ill patients end up being pushed toward euthanasia relevant or not? And: why do some patient groups decidedly reject euthanasia? What are their reasons, and how could this be changed?
“These issues should be the subject of future studies. At the same time, the existing literature should be evaluated on these points”, the authors write. “This could be the most effective way to introduce objective evidence for euthanasia into the discussion”.
Covering incidence rate and complications more accurately
The same call is being made by Emanuel and his team. In their view, more systematic data should be collected on the subject of euthanasia around the world – not only in countries where it is already legal. “In doing so all three areas should be investigated”, the researchers write. “The actual frequency of medical euthanasia use, how often euthanasia is requested and with what methods it is performed, and finally, the incidence rate of complications”. In countries where euthanasia is legal, careful analysis of the official data and death certificates should be carried out – similarly to what is already the case in the Netherlands and Belgium.