For the first time, this study provides data on end-of-life medical decisions on a representative sample of all deaths in France.
In 12.2% of cases, the decision was to do everything possible to prolong life. Non-treatment decisions were made in 16.8% of cases, treatment was withheld in 14.6% and withdrawn in 4.2%. Alleviation of symptoms with opioids and/or benzodiazepines was intensified in 28.1% of cases, A drug was administered to deliberately hasten death in 0.8% of cases, at the patient's request in 11 out of the 38 cases concerned.
The study shows that end-of-life medical decisions that may hasten death are relatively frequent in France. Most of such decisions are in compliance with the law, which allows physicians to withhold or withdraw life prolonging treatment and to intensify alleviation of symptoms even if unintended side effects may hasten death (“double effect”), as long as the first intention is not to hasten death. In a much smaller number of cases (3.1%), the death followed a decision made with the declared intention of hastening death. The patient's pathology is the main factor governing this type of decision. Even though most end-of-life medical decisions are made in compliance with the 2005 law, and decisions leading to a strong likelihood of death are more frequently taken after discussion with the patient or trusted third party and the medical staff (other doctors, nursing staff), the study shows that the legal provisions governing these decisions are not always fully respected.
Strengths and limitations
For the first time in France, this study provides data on end-of-life decisions on a representative sample of deaths, whatever the cause, wherever the death took place. It gives objective results on this important issue that will inform and assist both public and legislative debate. The French national end-of-life watchdog Observatoire National de la Fin de Vie (ONFV) has noted the lack of available scientific data on medical practices in this regard in France .
This survey also shows that investigating this sensitive topic and even exploring illegal practices is possible in France; this was by no means certain when the study was first launched. That is why we deliberately adapted the questionnaire to take account of the French legislative context and of the French sensitivity on this issue revealed in preliminary tests, even at the expense of comparability with other countries.
From a methodological viewpoint, we conducted the survey using a mixed mode approach, i.e. enabling physicians to answer either by Internet or by returning the questionnaire in a paid-reply envelope. We developed a different process for each of the response channels in order to guarantee total anonymity.
The 40% participation rate is towards the bottom of the range of the European EURELD surveys and could be considered as a limitation . One explanation for this low rate might be that, unlike some of the EURELD surveys with a higher response rate, we did not stratify the sample according to the likelihood that death followed a potential end-of-life decision, and therefore sent our questionnaire to proportionally more physicians who would probably consider their patient's end of life to be irrelevant to the survey. But in fact, this participation rate is fairly close to that for other surveys of French physicians [7, 14]. In the non-response survey, the main reasons given were lack of time and refusal to take part in any kind of survey. Few doctors mentioned the survey topic as a reason for not responding. The length of the questionnaire and, above all, the need to look through the patient’s case history may have been dissuasive. Some doctors did not feel the survey concerned them, especially if they had not been treating the patient prior to death, as the under-representation of deaths from external causes also suggests.
Nevertheless, the comparison of respondent and non-respondent physicians’ profiles reveals no significant differences, lending support to our belief that this assessment of end-of-life medical decisions is likely to be reliable, although an under-estimation of illegal practices cannot be excluded.
This survey, like others on the same topic, [2, 4, 15–27] is based on the responses of physicians, who are best placed to answer questions about decisions for which they have taken responsibility. However, one limitation is that they can only report on their own experience of a reality that also involves other people (the patient, the family or friends, other medical staff etc.) who might have different points of view.
Comparison with end-of-life decisions in other studies
The only figures available in France about end-of-life decisions concerned withholding or withdrawal of life support were conducted in 2004, prior to the law. In the MAHO survey , carried out in public hospitals, withholding or withdrawing life support was less frequent than in our results concerning all public hospitals (45.4% of the deceased patients included in the study, vs. 51.2% in our survey). In the DALISA survey [8, 14], carried out in emergency departments, withholding life support was observed in 41.5% of the deaths, and withdrawing (alone or preceded by withholding) life support in 58.5%, vs. 89% and 11% respectively, in our results concerning emergency departments. These differences may be partially explained by the different study designs; the legislation has also changed between these studies and ours.
It is not easy to compare study findings with those conducted elsewhere, even where similar survey protocols are used (retrospective survey of certifying physicians, with a representative sample of deaths). The definition we used for sudden deaths and the wording and approach for questions about end-of-life medical decisions were different to those used in EURELD type studies. In particular, we chose a two-step approach: a question on a treatment/decision (withholding, withdrawing a treatment, intensifying the alleviation of pain); and, for each decision made, its possible or certain effect on hastening death as well as the intention of hastening death, is investigated. According to Seale  who compared the two wordings for UK, the two-step approach gives a lower percentage of end-of-life decisions compared to the approach where the potential effect of hastening death is included in the question of treatment. As a result, end-of-life decisions could not be classified in an identical manner as Eureld, although we tried to get as close as possible. If we had replaced our definition of “sudden death” (deaths declared by physician as “sudden and unexpected” and for which they cannot provide any information about the patient's end of life) with the EURELD definition, the percentage of sudden deaths would have more than doubled (from 16.9 to 39.3%). This change of definition of sudden deaths reduces more the proportion of medical decisions without any intention regarding deaths than the one that possibly or certainly hastened deaths.
Compared with the 2001 Eureld survey results  and more recent results in Belgium  and the Netherlands , and taking the definitions of medical decisions closest to those used in these surveys, the proportion of sudden deaths in the French data (39%) is higher than that of all other countries (29-34%). The percentage of deaths for which a decision was made that possibly or certainly hastened death (40%), is around the average observed in the other European countries. It is much higher than in Italy, (29% in 2001), but well below the levels in Switzerland, where assisted suicide is legal (51% in 2001), and in the Netherlands (57% in 2010) and Belgium (48% in 2007), two countries where euthanasia has been legalised. In France, intensification of treatment to alleviate pain and/or symptoms is close to the level observed in Belgium in 2007, but slightly higher than in most EURELD countries. However, levels of withholding or withdrawal of treatment are similar to those observed in more recent surveys in Belgium and the Netherlands.
France ranks among the countries with a low percentage of physician-assisted dying by administration of a drug to deliberately hasten death. At less than 1%, this level is close to the Danish level in 2001, it is higher than in Sweden and Italy and much lower than in the Netherlands and Belgium. No physician-assisted suicide was reported and euthanasia (at the patient’s request) is very rare. According to our results, a fifth of medical decisions that possibly or certainly hastened deaths are made at the patient’s request, (a third for deaths with a decision to administer a medication to deliberately hasten death). This is much lower than in the Netherlands and Belgium (where Euthanasia is legal). It is higher than in other European countries in the 2001 Eureld survey. Discussion of the decision with competent patients was more frequent in France (80%) than in most European countries in 2001 with the exception of the Netherlands. Also for non-competent patients, the family is very often involved in the discussion (78%), less frequently than in the Netherlands, similarly to Belgium-Switzerland but much more frequently than in other countries. This might reflect an effect of the French law on discussion with patients or relatives.
Overall, the main results on end-of-life medical decisions are consistent with those of surveys conducted in other countries: intensification of pain relief treatment is the most common decision  and administration of drugs to intentionally end the patient’s life is rare.
Discussion of the findings in light of the French law
In France, the 2005 law on patients’ rights and the end of life defined a legal framework allowing patients to refuse any treatment they consider unreasonable, and allowing doctors to decide on treatments that may have the side effect of hastening death, in accordance with the wishes expressed by the patient . The medical decisions observed in our survey mostly complied with French legal requirements, as the 2005 Act allows withholding and withdrawal of life support, and intensified alleviation of symptoms even when it may (unintentionally) hasten death. Indeed 80% of the physicians who made this decision said they were aware of its potential “double effect”. Some decisions overstepped the law, although very rarely. A drug was administered with the explicit intention of hastening death – an act that can be considered as poisoning under French law – at the patient's explicit request in 0.2% of these deaths, and without a clear patient request in another 0.6%. Intention to hasten death was also declared, even if very infrequently, in some of the decisions of life support withholding or withdrawal or of intensified alleviation of symptoms. As a whole, decisions with intention to hasten death amounted to 3.1% of all deaths, and only one out five of these decisions was made on the patient's explicit request, whereas such a request is mandatory in all countries where the law permits euthanasia in specific cases, and is part of the ONFV definition of euthanasia .
The decision making processes observed in our survey were far from complying with the 2005 legal procedures, which are required whatever the end-of-life decision made. A discussion with the patient when competent was mentioned by the physician in only 72% of the cases when a drug was administered intentionally to hasten death, in 80% when life support was withdrawn, and 41% when everything was done to prolong life.
When an end-of-life decision is made for an incompetent patient, advance directives if any, discussion with a trusted third party previously named by the patient, if any, discussion with the family, if any, discussion with a colleague not in charge of the patient, with colleagues and with nursing staff members, are compulsory components of the decision-making process. When a treatment was withdrawn for a possibly incompetent patient, the decision was discussed with other doctors in 39% of cases, with the nursing staff in 27% of cases and with the family in 50% of cases. The physician made this decision alone in 14% of cases. When a drug was administered with the intention of hastening death, the decision was discussed in 14, 10, 19 and 4 cases out of 24, respectively.
Looking at these discrepancies between legal requirements and actual practice, we should not forget that our survey concerned deaths that occurred in December 2009, less than three years after the revision of the medical ethics charter. There is still a lot to be done through medical education and population awareness-raising to ensure that no physician is obliged to face such difficult decisions alone.