End-of-life medical decisions in France: a death certificate follow-up survey 5 years after the 2005 act of parliament on patients’ rights and end of life

  • Sophie Pennec1, 2Email author,

    Affiliated with

    • Alain Monnier1,

      Affiliated with

      • Silvia Pontone1, 3 and

        Affiliated with

        • Régis Aubry4, 5

          Affiliated with

          BMC Palliative Care201211:25

          DOI: 10.1186/1472-684X-11-25

          Received: 5 April 2012

          Accepted: 23 November 2012

          Published: 3 December 2012

          Abstract

          Background

          The “Patients’ Rights and End of Life Care” Act came into force in France in 2005. It allows withholding/withdrawal of life-support treatment, and intensified use of medications that may hasten death through a double effect, as long as hastening death is not the purpose of the decision. It also specifies the requirements of the decision-making process. This study assesses the situation by examining the frequency of end-of-life decisions by patients’ and physicians’ characteristics, and describes the decision-making processes.

          Methods

          We conducted a nationwide retrospective study of a random sample of adult patients who died in December 2009. Questionnaires were mailed to the physicians who certified/attended these deaths. Cases were weighted to adjust for response rate bias. Bivariate analyses and logistic regressions were performed for each decision.

          Results

          Of all deaths, 16.9% were sudden deaths with no information about end of life, 12.2% followed a decision to do everything possible to prolong life, and 47.7% followed at least one medical decision that may certainly or probably hasten death: withholding (14.6%) or withdrawal (4.2%) of treatments, intensified use of opioids and/or benzodiazepines (28.1%), use of medications to deliberately hasten death (i.e. not legally authorized) (0.8%), at the patient’s request (0.2%) or not (0.6%). All other variables held constant, cause of death, patient's age, doctor’s age and specialty, and place of death, influenced the frequencies of decisions. When a decision was made, 20% of the persons concerned were considered to be competent. The decision was discussed with the patient if competent in 40% (everything done) to 86% (intensification of alleviation of symptoms) of cases. Legal requirements regarding decision-making for incompetent patients were frequently not complied with.

          Conclusions

          This study shows that end-of-life medical decisions are common in France. Most are in compliance with the 2005 law (similar to some other European countries). Nonetheless, the study revealed cases where not all legal obligations were met or where the decision was totally illegal. There is still a lot to be done through medical education and population awareness-raising to ensure that the decision-making process is compatible with current legislation, the physician's duty of care and the patient’s rights.

          Background

          The annual number of deaths in France, ranging between 500,000 and 600,000, has varied relatively little since World War II, with the decline in mortality rates being offset by population growth. However, as the large post-war cohorts grow older, the numbers of deaths will increase considerably (to 770,000 by 2050). Whereas just after World War II most people died at home, in France, as in other developed countries, most now die in hospital.

          These changes are bound to affect the way death is seen and experienced, and to influence future health policy and medical practices. As medical progress increasingly prolongs the life expectancy of the chronically ill, end-of-life questions such as place of death, palliative care, decisions to withdraw or reduce active treatment, staff resources, the role of the family in end-of-life care and demand for euthanasia are becoming ever more critical.

          End-of-life legal provisions vary widely across Europe. In France, the Act of 22 April 2005 on Patients’ Rights and End-of-Life Care [1] introduced three main measures: Firstly, it prohibits “unreasonable obstinacy” and therefore the continuation of futile medical treatments. Secondly, it strengthens the right of access to palliative care for any person whose condition requires such care, and recognizes that, under certain conditions, pain and symptom relief may require drugs that, at high doses, may have the unintended effect of shortening the patient’s life. Thirdly, it strengthens the principle of patient autonomy and of discussion with the patient. If the patient is not competent, the end-of-life medical decision must be taken after discussion with a trusted third party or surrogate (if the patient has named one), and the family, if any, and after consultation with medical staff or colleagues.

          Nevertheless, legalising euthanasia remains a highly controversial topic in the public and political arena, as seen during the 2012 presidential election.

          In Europe, various surveys [25] have shown that in order to better understand end-of-life conditions, it is important to study the medical decisions taken prior to death. In France, the only surveys on end-of-life decisions conducted until now focused on deaths in hospital or emergency wards [69]. The survey Fin de Vie en France (“End of life in France”), conducted in 2010, concerned all deaths, regardless of cause or place (hospital, home, nursing home…). It provides an overview of end-of-life care in France that can be used as a baseline for assessing future developments.

          This paper focuses on the medical decisions relating to end-of-life care in France. It looks at how the decisions varied according to the person's and physician's characteristics. It also investigates the extent to which these decisions comply with the 2005 law.

          Methods

          Retrospective survey of physicians

          As in previous European surveys [10], we conducted a retrospective survey on a sample of deaths where the respondents were the certifying physicians.

          This sample of 14,999 deaths was selected by Inserm-CepiDc (Centre d’épidémiologie sur les causes médicales de décès) using a systematic random procedure. We ensured that it was representative (in terms of age, sex, place of death and region of death) of the 47,872 persons aged 18 and over who died in France in December 2009. Stratification by cause of death (a proxy for the likelihood of an end-of-life decision) was not possible because of the delay in registration of causes of death.

          For each death, we identified the certifying physicians on the death certificates and we mailed them the questionnaire with instructions for replying. Physicians could respond either by post (with paid-reply envelope) or online. These two response channels involved trusted third parties (virtual for Internet responses) to ensure medical confidentiality with regard to the deceased and the anonymity of both the deceased persons and the physicians taking part in the study [11]. Three follow-up letters were sent and a follow-up phone call was made.

          We also conducted a telephone survey on a sample of 620 non-responding physicians to ensure that the results were representative. We recorded their socio-demographic profiles and their reasons for non-response.

          Questions and variables

          The questionnaire was based on the Eureld survey questionnaire [10] but was adapted to take account of the French legal context and of the results of preliminary tests. It comprised 113 questions (see Additional file 1). End-of-life medical decisions and the decision-making process were explored in the middle part of the questionnaire after questions about the end-of-life context (characteristics of the deceased person, physician, place of death, whether palliative care had been provided). Another section comprised questions on the physician's feelings about the death. The last section asked the physicians whether they habitually respond to surveys and what made them decide to respond to this particular survey if such was the case.

          The key questions about end-of-life medical decisions were (see Additional file 2) (1) whether first of all everything was done to prolong the patient’s life (2) whether a treatment of any kind was withheld; (3) whether a treatment of any kind was withdrawn; (4) whether a treatment to alleviate the symptoms was intensified (opioids, benzodiazepines and/or any other treatment) and (5) whether a medication was administered to the patient to deliberately end his/her life. For questions (2) to (4), three sub-questions investigated the physician's intention: (a) did he/she know that his/her decisions could hasten the death (b) did he/she take the decision with the explicit intention of hastening the death and (c) did he/she consider the decision to have hastened the death. We classified the answers to these questions to ensure maximum similarity with the EURELD classification of medical end-of-life decisions (as published in Van den Heide [4]): when one of questions (2) (3) and one of their sub-questions (a) (b) were answered yes, the case was classified as “non treatment decision”; when question (4) and one of its sub-questions (a) (b) were answered yes, the case was classified as “intensification of alleviation of symptoms with possible life shortening effect”; when question (5) was answered yes, we classified the case as “using a medication to deliberately hasten death”, differentiating between treatment at the patients explicit request, administration by the patient him/herself inphysician assisted suicideor administration by a nurse or a physician. When questions (2) to (5) were answered no and question (1) was answered yes, the case was classified as “life prolonging decision”; when questions (1) and (5) were answered no and the sub-questions (a) or (b) to questions (2) (3) (4) were answered no, we classified the case as “no decision”. When questions (2), (3) or (4) were answered “yes” and sub-questions (a) and (b) were answered “no” or “missing”, the case was classified as “medical decision without any intention regarding death”.

          When more than one question (1) to (5) had been answered yes, the decision with the most explicit intention took precedence over other decisions. In cases of similar intention, question (5) took precedence over question (4), which took precedence over question (3), which took precedence over question (2).

          We define as sudden deaths those deaths that the physician considered as sudden and unexpected and for which he/she cannot give any information about the end of life. Some deaths were qualified as sudden by the physician, although he/she was able to give information about end-of-life decisions, and such a decision did exist in 60% of those cases. We therefore included them in our study of “non sudden deaths”.

          Information on the person's ability to express his/her wishes was based on what the physician had noted from his/her discussion of the decision with the person, and on the reasons put forward for not having had such a discussion. Some persons were judged not competent to be involved in a discussion about their wishes, and some further persons, after taking part in such a discussion, were judged not competent to appreciate their situation and/or to decide for themselves. We did not have any clear information about the persons’ abilities in other cases. We considered that the remaining persons were competent.

          Participation

          Among the entire initial sample of 14,999 deaths, 646 of the certifying physicians could not be identified. No physician was asked about more than four deaths, even if they had certified more. In all, 14,080 questionnaires were sent to 11,828 certifying physicians (of whom 14% had signed more than one death certificate). 461 questionnaires did not reach the addressee owing to postal problems or typing errors; 608 responses did not include a completed questionnaire (e.g., physician no longer practising or not the attending physician). 5,217 completed questionnaires were received, giving an overall participation rate of 40% [12]. Only a quarter of responses were obtained online even though respondents were given a full guarantee of anonymity with both collection modes. The results presented are based on 4,891 questionnaires since 327 concerned deaths outside the observation period.

          Quality control and weighting

          The characteristics of the 4,891 deaths in the survey are very close to those of all deaths in December 2009. There is a slightly higher percentage of deaths in public hospitals (55% versus 50%) and a correspondingly lower percentage at home, in private hospitals and retirement homes. Cancers and infectious diseases are slightly over-represented, and cardio-vascular diseases and deaths from external causes are under-represented.

          The answers were weighted for non-response bias according to the number and distribution of the reference variables used to select the initial sample of death certificates: age and sex of the deceased, place of death and region of residence.

          Statistical analysis

          The categorical data were described using frequencies and percentages. Univariate and bivariate analyses were tested with the exact Fisher test instead of a standard Chi square because of the low numbers in some categories. It tests the relation between a variable and a particular medical decision, i.e. whether the observed distribution of a variable for a particular medical decision is different from cases without this medical decision. Logistic regressions were performed for each medical decision with more than 150 observed cases, taking into account both patients' and physicians' characteristics. All tests were performed at a significance level of 1%. Logistic regressions (not shown) were performed to determine the variables or characteristics that remain significant, all other variables held constant. The results section focuses on the significant effects of these variables. The statistical analyses were performed using the SAS Version 9.2 statistical software package.

          Ethics

          This survey was approved by the Comité Consultatif sur le Traitement de lInformation en Matière de Recherche dans le Domaine de la Santé (CCTIRS) in January 2010 and authorized by the Commission Nationale de lInformatique et des Libertés data protection committee (CNIL, - authorization No. 1410166 at sitting 2010–107 of 15 April 2010).

          Results

          End-of-life medical decisions

          We had to exclude 168 cases owing to missing data. Sudden deaths (n=798) amounted to 16.9% of the total (Table 1). For 2,252 non-sudden deaths, one or more decisions were made that possibly or certainly hastened death. For almost half of these deaths, there were two or more decisions. In 34% of all deaths, a life-prolonging treatment was withheld; in 11% it was withdrawn. In 29% of cases alleviation of pain and/symptoms was intensified and in 0.8% a medication was administered deliberately to hasten death.
          Table 1

          Frequency of all the different end-of-life medical decisions

           

          All decisions

           

          Most important decision

           

          Weighted data

           

          Weighted data

           

          N

          Percentage

          95% Confidence interval

          Unweighted data N

          N

          Percentage

          95% Confidence interval

          Sudden death

          798

          16.9

          15.8-18.0

          789

          798

          16.9

          15.8-18.0

          Medical decision without any intention regarding death

          Life-prolonging treatment

          1513

          32

          30.7-33.4

          588

          576

          12.2

          11.3.13.2

          Treatment withheld

          325

          6.9

          6.2-7.6

          140

          140

          3

          2.5-3.5

          Treatment withdrawn

          86

          1.8

          1.4-2.2

          15

          15

          0.3

          0.2-0.5

           Intensification of treatment to alleviate symptoms  with opioids or benzodiazepines

          386

          8.2

          7.4-8.9

          252

          246

          5.2

          4.6-5.8

          Intention of treatment to alleviate symptoms with  medications other than opioids or benzodiazepines

          199

          4.2

          3.6-4.8

          97

          97

          2.1

          1.7-2.5

          None of the above

          599

          12.7

          11.7-13.7

          571

          599

          12.7

          11.7-13.7

          Medical end-of-life practice that possibly or certainly hastened death

             

          2239

          2252

          47.7

           

          Treatment withheld

          1594

          33.7

           

          691

          688

          14.6

          13.6-15.6

          Knowing that the decision may hasten the death

          1526

          32.3

          31.0-33.6

          657

          655

          13.9

          12.9-14.9

          With the intention of hastening death

          68

          1.4

          1.1-1.8

          34

          33

          0.7

          0.5-0.9

          Treatment withdrawn

          531

          11.2

           

          202

          199

          4.2

          3.6-4.8

          Knowing that the decision may hasten the death

          465

          9.8

          9.0-10.7

          162

          161

          3.4

          2.9-3.9

          With the intention of hastening death

          66

          1.4

          1.1-1.7

          40

          38

          0.8

          0.6-1.1

          Intensification of treatment to alleviate pain and/or symptoms (opioids/benzodiazepines)

          1381

          29.2

           

          1346

          1327

          28.1

          26.8-29.4

          Knowing that the decision may hasten the death

          1324

          29.0

          26.7-29.3

          1306

          1288

          27.3

          26.0-28.5

          With the intention of hastening death

          57

          1.2

          0.9-1.5

          40

          39

          0.8

          0.6-1.1

          Use of a drug to deliberately end life*

          38

          0.8

          0.5-1.1

          38

          38

          0.8

          0.5-1.1

          At patients request

          11

          0.2

          0.1-0.4

          10

          11

          0.2

          0.1-0.4

          Sudden deaths: deaths declared “sudden and unexpected” and on which the physician has no information about the end of life.

          The weighted percentages are weighted for non-response bias.

          All decisions = every affirmative answer to questions about medical decisions.

          Most important decision = when more than one decision is observed, the one with the most explicit intention (or awareness) of hastening death (see classification details in Methods).

          * no doctor assisted suicide have been observed.

          Missing values: 168.

          Considering only the most important decision for each death, the proportion of cases with administration of medication to deliberately hasten death does not change (0.8% of all deaths). Of these 38 decisions, 11 were at the patient’s request.

          The physician reported increasing opioid and/or benzodiazepine doses in another 28% of all deaths. Withdrawal of life-prolonging treatment was decided in 4% of all deaths, and life-prolonging treatment was withheld in another 15% of all cases. These medical decisions were made with the explicit intention to hasten death in 0.8%, 0.8%, 0.7% of cases, respectively.

          In all, considering only the most important medical decisions, 3.1% of all deaths followed a decision to hasten death.

          For 12.2% of all deaths, the sole reported medical decision was doing everything possible to prolong life, and for 12.7% no decision was made (no decision to do everything to prolong life and none of the other decisions mentioned in the questionnaire). In 11% of cases a medical decision without any intention regarding death was reported.

          End-of-life medical decisions by patient's and physician's characteristics

          The pathology (cause of death and incurability) and age of the deceased were decisive in end-of-life decisions. The frequency of end-of-life decisions varies from 71% for cancer to 41% for cardio-vascular diseases. For cancer patients, 3 in 4 end-of-life medical decisions consisted of intensifying alleviation of symptoms; for respiratory diseases, end of life decisions were more diverse, with intensification of alleviation of symptoms in 40% of cases and withholding a treatment in 50%. It is difficult to interpret the variations in administration of a drug to deliberately end life owing to the small numbers concerned (Table 2).
          Table 2

          Frequency of all the different medical end-of-life decisions in France by patients’ characteristics (non-sudden deaths)

           

          Life prolonging treatment

          Withholding treatment

          Withdrawing treatment

          Intensification of alleviation of symptoms

          Administration of a medication to deliberately hasten death

          No decision

          Total deaths

           

          n

          %

          n

          %

          n

          %

          n

          %

          n

          %

          n

          %

          n

          Gender

           Man

          302

          15.62

          335

          17.32

          105

          5.43

          641

          33.15

          20

          1.02

          531

          27.46

          1934

           Woman

          274

          13.74

          354

          17.78

          94

          4.72

          686

          34.45

          18

          0.89

          566

          28.42

          1991

          p value

           

          0.0865

           

          0.7323

           

          0.3214

           

          0.4289

           

          0.6790

           

          0.5478

           

          Age

           18-49

          37

          24.82

          14

          9.41

          7

          4.71

          50

          33.62

          1

          0.56

          40

          26.89

          149

           50-69

          139

          19.79

          74

          10.52

          43

          6.11

          268

          38.08

          11

          1.63

          168

          23.87

          704

           70-79

          113

          14.63

          128

          16.63

          42

          5.46

          294

          38.20

          7

          0.90

          186

          24.17

          770

           80-89

          204

          13.05

          309

          19.79

          79

          5.06

          486

          31.13

          16

          1.04

          467

          29.92

          1561

           90+

          83

          11.30

          163

          22.07

          29

          3.93

          227

          30.74

          2

          0.27

          234

          31.69

          738

          p value

           

          <0.0001

           

          <0.0001

           

          0.4066

           

          0.0003

           

          0.1118

           

          0.0008

           

          Place of death

           At home

          104

          15.60

          100

          14.96

          22

          3.29

          150

          22.44

          9

          1.37

          283

          42.34

          668

           Public hospital

          334

          15.67

          393

          18.44

          121

          5.68

          793

          37.21

          16

          0.76

          474

          22.24

          2131

           Private hospital

          59

          14.97

          56

          14.15

          23

          5.81

          156

          39.41

          8

          1.92

          94

          23.75

          396

           Hospice, retirement home

          66

          9.95

          132

          19.83

          33

          4.96

          207

          31.10

          3

          0.51

          224

          33.65

          666

           Public place, street or other

          12

          18.90

          8

          12.43

          0

          0.00

          20

          31.08

          1

          1.85

          23

          35.74

          64

          p value

           

          0.0037

           

          0.0124

           

          0.0181

           

          <0.0001

           

          0.1017

           

          <0.0001

           

          Cause of death

           Cancer

          69

          5.57

          171

          13.76

          50

          4.02

          643

          51.73

          21

          1.68

          289

          23.25

          1243

           Cardio-vascular disease

          208

          24.92

          129

          15.46

          42

          5.03

          175

          20.97

          4

          0.44

          277

          33.19

          835

           Neurological disease

          68

          11.02

          146

          23.59

          42

          6.79

          183

          29.57

          5

          0.76

          175

          28.27

          619

           Infectious disease

          63

          21.01

          64

          21.43

          15

          5.02

          101

          33.81

          3

          0.99

          53

          17.74

          299

           Respiratory disease

          45

          17.29

          76

          29.37

          11

          4.25

          61

          23.57

          3

          1.17

          63

          24.35

          259

           Digestive disease

          42

          25.77

          27

          16.53

          7

          4.29

          47

          28.78

          1

          0.75

          39

          23.88

          163

           Mental or psychiatric disorder

          7

          5.57

          24

          19.85

          10

          8.27

          38

          31.43

          1

          0.97

          41

          33.91

          121

           Other cause

          64

          19.28

          45

          13.55

          21

          6.33

          64

          19.28

          0

          0.00

          138

          41.57

          332

           .

          11

          20.26

          5

          9.49

          2

          3.80

          14

          26.58

          0

          0.00

          21

          39.87

          53

          p value

           

          <0.0001

           

          <0.0001

           

          0.1918

           

          <0.0001

           

          (0.0728)

           

          <0.0001

           

          Incurable disease

           Yes

          235

          9.63

          434

          17.79

          120

          4.92

          982

          40.25

          29

          1.17

          640

          26.23

          2440

           No

          303

          23.09

          224

          17.06

          72

          5.48

          319

          24.29

          9

          0.68

          386

          29.39

          1313

           .

          38

          21.92

          31

          17.78

          7

          4.05

          26

          14.82

          0

          0.00

          72

          41.43

          173

          p value

           

          <0.0001

           

          0.5357

           

          0.5044

           

          <0.0001

           

          0.2138

           

          0.0231

           

          All percentages are weighted for non-response, to ensure there are representative of the initial. The percentage cannot be derived from the absolute unweighted absolute numbers. The p values are obtained with a Fisher exact test. Due to some cells with small numbers, some assumptions of a chi2 test are complied with.

          The medical decision to withhold a treatment increases steadily with age from 9.4% with the youngest patients to 22% with the oldest. Conversely, implementation of life-prolonging treatments declines with age, from 24.8% to 11.3%. For patients aged over 50, intensification of alleviation of symptoms varies little with age.

          The frequencies of the different decisions by respondent physicians' characteristics are shown in Table 3. The patient’s pathology and the number of deaths certified in the previous three months were directly linked to physician’s speciality: 46% of cancer specialists certified more than 10 deaths in the previous three months compared with 10% of general practitioners, cardiologists and surgeons. Logistic regressions (detailed results not shown) confirm and clarify the decisive influence of the patient’s pathology on the end-of-life decisions made. All other variables held constant, physicians involved in the care of cancer patients reported significantly less often that they had “done everything possible to prolong life”. They more often withheld treatment than those treating other pathologies (except cardio-vascular and digestive diseases), and more often intensified the alleviation of symptoms. The age of the patient does not seem to be a determinant for the type of end-of-life decision (non-treatment decisions or intensifying the alleviation of symptoms). However, the older the patients, the less frequent the decision to do everything possible to prolong life. Lastly, there is little differentiation by physician’s speciality, except for anaesthesiologists and intensivists and emergency physicians, who were more likely to do everything possible to prolong life, and cancer specialists who were more likely to intensify the alleviation of symptoms. Young physicians seem to be less likely to do everything possible to prolong life and are more likely to intensify the alleviation of symptoms. End-of-life decisions are more likely to be made in hospital than at home.
          Table 3

          Frequency of all the different medical end-of-life decisions in France by physicians’ characteristics (non sudden deaths)

           

          Life prolonging treatment

          Withholding treatment

          Withdrawing treatment

          Intensification of alleviation of symptoms

          Administration of a medication to deliberately hasten death

          No decision

          Total deaths

           

          n

          %

          n

          %

          n

          %

          n

          %

          n

          %

          n

          %

           

          Gender

           Man

          414

          15.9

          452

          17.4

          123

          4.7

          822

          31.6

          29

          1.1

          758

          29.2

          2598

           Woman

          156

          12.1

          232

          18.0

          74

          5.8

          485

          37.7

          8

          0.6

          332

          25.8

          1287

           .

          6

          16.2

          4

          10.2

          2

          5.1

          20

          50.8

          0

          0.0

          7

          17.8

          39

          P value

           

          0.0074

           

          0.4357

           

          0.4072

           

          <0.0001

           

          0.2600

           

          0.0453

           

          Age

           Under 40

          120

          13.8

          161

          18.4

          50

          5.7

          351

          40.2

          14

          1.5

          178

          20.4

          874

           40-49

          168

          14.9

          198

          17.6

          75

          6.7

          371

          33.0

          3

          0.3

          310

          27.5

          1125

           50-59

          200

          14.7

          237

          17.5

          56

          4.1

          424

          31.3

          14

          1.0

          424

          31.3

          1355

           60 and over

          86

          15.8

          87

          16.0

          16

          2.9

          169

          31.1

          7

          1.2

          179

          33.0

          543

           .

          3

          9.6

          5

          18.1

          2

          7.2

          11

          39.8

          0

          0.0

          7

          25.3

          28

          P value

           

          0.8056

           

          0.8511

           

          0.0049

           

          0.0002

           

          0.0600

           

          <0.0001

           

          Speciality

           General practice

          142

          11.0

          229

          17.7

          47

          3.6

          410

          31.7

          13

          1.0

          450

          34.8

          1292

           Intensive care

          136

          29.1

          58

          12.4

          58

          12.4

          147

          31.4

          5

          1.0

          64

          13.7

          468

           Oncology

          13

          7.1

          17

          9.5

          6

          3.4

          96

          53.9

          6

          3.1

          41

          23.0

          178

           Cardiology

          32

          26.7

          26

          21.6

          1

          0.8

          34

          28.2

          5

          4.4

          22

          18.3

          120

           Surgery

          16

          24.1

          7

          10.8

          2

          3.1

          22

          34.1

          0

          0.0

          18

          27.9

          65

           Geriatrics

          75

          8.8

          151

          17.7

          44

          5.2

          330

          38.7

          3

          0.3

          250

          29.3

          853

           Emergency

          81

          24.4

          63

          18.9

          15

          4.5

          50

          15.0

          0

          0.0

          124

          37.2

          333

           Neurology

          2

          4.9

          9

          24.6

          1

          2.5

          16

          43.5

          0

          0.0

          9

          24.5

          37

           Other

          78

          13.9

          125

          22.2

          25

          4.4

          213

          37.9

          6

          1.0

          115

          20.5

          562

           .

          1

          4.2

          3

          14.4

          2

          9.6

          11

          52.7

          0

          0.0

          4

          19.2

          21

          P value

           

          <0.0001

           

          0.0014

           

          (<0.0001)

           

          <0.0001

           

          0.0003

           

          <0.0001

           

          Work context

           General practice

          93

          12.2

          135

          17.7

          21

          2.8

          201

          26.4

          10

          1.3

          301

          39.5

          761

           Public hospital

          352

          17.9

          357

          18.1

          123

          6.2

          670

          34.0

          17

          0.8

          451

          22.9

          1970

           Private hospital

          47

          16.6

          31

          11.0

          17

          6.0

          120

          42.4

          4

          1.4

          64

          22.6

          283

           Medico-social, rehab. or  LTC establishment

          16

          6.9

          51

          21.7

          7

          3.0

          99

          42.1

          0

          0.0

          62

          26.4

          235

           Other

          20

          9.2

          30

          13.6

          11

          5.0

          78

          35.4

          2

          1.0

          79

          35.8

          221

           Several work contexts

          44

          10.6

          77

          18.7

          19

          4.6

          138

          33.5

          4

          1.1

          130

          31.5

          412

           .

          4

          9.1

          6

          14.3

          1

          2.4

          21

          50.2

          0

          0.0

          10

          23.9

          42

          P value

           

          <0.0001

           

          0.0271

           

          0.0544

           

          <0.0001

           

          (0.5054)

           

          <0.0001

           

          Size of agglomeration

           <5000

          55

          8.5

          118

          18.4

          25

          3.9

          212

          33.0

          10

          1.6

          222

          34.6

          642

           5-10000

          60

          13.8

          74

          17.1

          16

          3.7

          130

          30.0

          3

          0.8

          150

          34.7

          433

           20-20000

          72

          15.2

          84

          17.8

          20

          4.2

          153

          32.4

          5

          1.1

          138

          29.2

          472

           20-100000

          212

          17.7

          210

          17.5

          64

          5.3

          406

          33.9

          9

          0.8

          296

          24.7

          1197

           100-200000

          56

          14.1

          75

          18.7

          29

          7.2

          130

          32.4

          2

          0.5

          109

          27.1

          402

           >200000

          107

          16.0

          110

          16.4

          41

          6.1

          256

          38.2

          6

          0.9

          150

          22.4

          670

           .

          15

          13.7

          18

          16.5

          4

          3.7

          40

          36.6

          1

          1.2

          31

          28.4

          109

          P value

           

          <0.0001

           

          0.9308

           

          0.0891

           

          0.1108

           

          (0.6023)

           

          <0.0001

           

          Number of deaths certified in the past 3 months

           0

          34

          16.8

          40

          19.5

          10

          4.9

          57

          27.8

          2

          1.1

          61

          29.8

          205

           1--2

          123

          15.0

          144

          17.6

          24

          2.9

          241

          29.4

          10

          1.2

          277

          33.8

          819

           3--4

          169

          16.0

          199

          18.8

          62

          5.9

          337

          31.9

          9

          0.9

          280

          26.5

          1056

           5--9

          149

          15.2

          156

          15.8

          50

          5.1

          354

          35.9

          8

          0.8

          269

          27.3

          986

           10--19

          60

          11.6

          100

          19.3

          34

          6.6

          202

          39.1

          5

          1.0

          116

          22.4

          517

           20+

          18

          8.5

          28

          13.2

          15

          7.1

          94

          44.3

          0

          0.0

          57

          26.9

          212

           .

          22

          17.5

          21

          16.5

          5

          3.9

          39

          30.6

          3

          2.4

          37

          29.1

          127

          P value

           

          0.0534

           

          0.2641

           

          0.0259

           

          <0.0001

           

          (0.4672)

           

          0.0006

           

          In-service training on end-of-life

           Yes

          197

          10.6

          311

          16.7

          101

          5.4

          712

          38.3

          10

          0.6

          526

          28.3

          1858

           No

          370

          18.7

          364

          18.3

          94

          4.7

          588

          29.6

          25

          1.2

          543

          27.4

          1984

           .

          8

          10.0

          13

          15.5

          5

          5.9

          26

          30.9

          3

          3.1

          29

          34.5

          84

          All percentages are weighted for non-response, to ensure there are representative of the initial. The percentage cannot be derived from the absolute unweighted absolute numbers. The p values are obtained with a Fisher exact test. Due to some cells with small numbers, some assumptions of a chi2 test are complied with.

          Characteristics of the decision-making process

          We have exploitable information about how and why the decision was made only for cases where the end-of-life decision and life-prolonging treatment matches the last affirmative answer to questions (1) to (5), i.e. in 91% of cases.

          When such a decision was made, 1,706 persons were judged not competent (66% of all decisions) and in 13% of case we had no information about the persons’ competence. We considered that the remaining 545 persons were competent. (21%)

          In 70% of the cases, when an end-of-life decision was made, the persons, when competent, were involved in the discussion. The greater the likelihood that the decision made by the physician would hasten death, the more frequently he/she discussed it with the patient, if competent (see Table 4).
          Table 4

          Characteristics of decision-making by type of medical decision (non sudden deaths)

           

          Life prolonging treatment

          Withholding treatment

          Withdrawing treatment

          Intensification of alleviation of symptoms

          Administration of a medication to deliberately hasten death

           

          n

          %

          n

          %

          n

          %

          n

          %

          n

          %

          Decision discussed with patient (by respondent or other physician)

           Yes

          55

          9.6

          40

          8.02

          12

          8.63

          263

          19.82

          6

          16.18

           No

          79

          13.7

          40

          8.02

          3

          2.16

          44

          3.32

          2

          6.31

           Patient not competent

          308

          53.6

          357

          71.54

          112

          80.55

          904

          68.12

          25

          67.40

           Don't know

          19

          3.3

          6

          1.20

          3

          2.19

          26

          1.96

          1

          3.46

           No response

          114

          19.8

          56

          11.22

          9

          6.47

          90

          6.78

          2

          6.65

           Discussion, per 100 competent patients

           

          41.0

           

          50.0

           

          80.0

           

          85.7

           

          71.9

          Decision following patient's explicit request

           Yes and request repeated

          14

          2.43

          20

          4.03

          9

          6.39

          166

          12.50

          8

          21.00

           Yes and request not repeated

          4

          0.69

          5

          1.01

          1

          0.62

          41

          3.09

          2

          5.85

           Yes and do not know whether request repeated

          7

          1.22

          7

          1.41

          0

          0.00

          40

          3.01

          1

          2.63

           No

          418

          72.57

          392

          79.03

          117

          83.06

          962

          72.44

          22

          58.92

           No response

          133

          23.09

          72

          14.52

          14

          9.94

          119

          8.96

          4

          11.60

          Patient expressed wish at some moment to hasten death

           Yes

          13

          2.26

          46

          9.26

          14

          10.00

          203

          15.31

          14

          38.35

           No

          333

          57.81

          261

          52.52

          86

          61.43

          809

          61.01

          11

          28.99

           Do not know

          115

          19.97

          126

          25.35

          30

          21.43

          210

          15.84

          10

          27.30

           No response

          115

          19.97

          64

          12.88

          10

          7.14

          104

          7.84

          2

          5.36

          Decision discussed with another person

          incompetent person

           Doctors

          102

          33.12

          136

          38.10

          62

          55.36

          434

          48.01

          14

          56.00

           Nurses and nursing assistants, medical care team

          49

          15.91

          95

          26.61

          42

          37.50

          326

          36.06

          10

          40.00

           Family

          74

          24.03

          171

          47.90

          64

          57.14

          549

          60.73

          19

          76.00

           Other people

          1

          0.32

          3

          0.84

          0

          0.00

          4

          0.44

          0

          0.00

           Trusted third party

          19

          6.17

          29

          8.12

          15

          13.39

          150

          16.59

          5

          20.00

           As part of a collective decision

          16

          5.19

          24

          6.72

          15

          13.39

          137

          15.15

          5

          20.00

           No

          119

          38.64

          48

          13.45

          4

          3.57

          57

          6.31

          1

          4.00

           No response

          7

          2.27

          8

          2.24

          1

          0.89

          11

          1.22

          0

          0.00

          Trusted third party

          incompetent person

           Yes and involved in discussion phase

          57

          18.51

          71

          19.89

          22

          19.64

          312

          34.55

          8

          32.00

           Yes and not involved in discussion phase

          19

          6.17

          7

          1.96

          6

          5.36

          11

          1.22

          1

          4.00

           Yes and do not know whether involved or not

          4

          1.30

          2

          0.56

          1

          0.89

          3

          0.33

          0

          0.00

           No

          99

          32.14

          108

          30.25

          31

          27.68

          295

          32.67

          10

          40.00

           No because patient not capable of naming one

          54

          17.53

          105

          29.41

          27

          24.11

          177

          19.60

          4

          16.00

           Do not know

          75

          24.35

          64

          17.93

          25

          22.32

          105

          11.63

          2

          8.00

          Advance directive

          incompetent person

           Yes and was an important factor in the decision

          1

          0.32

          2

          0.56

          0

          0.00

          9

          1.00

          2

          8.00

           Yes and was not important factor in the decision

          0

          0.00

          2

          0.56

          0

          0.00

          3

          0.33

          0

          0.00

           Yes and do not know whether important factor  in the decision

          0

          0.00

          0

          0.00

          0

          0.00

          0

          0.00

          0

          0.00

           No

          185

          60.06

          233

          65.45

          75

          66.96

          685

          75.86

          16

          64.00

           Do not know

          122

          39.61

          119

          33.43

          37

          33.04

          206

          22.81

          7

          28.00

          Best description of the medical act

           Symptom treatment

          337

          58.41

          144

          28.92

          17

          12.15

          717

          54.03

          7

          19.44

           Decision to withhold or withdraw treatment

          20

          3.47

          237

          47.59

          104

          74.31

          123

          9.27

          6

          17.06

           Sedation for distress in terminal phase

          10

          1.73

          19

          3.82

          1

          0.60

          361

          27.21

          17

          45.59

           Euthanasia

          0

          0.00

          0

          0.00

          1

          0.79

          1

          0.07

          5

          12.04

           Medically assisted suicide

          0

          0.00

          0

          0.00

          0

          0.00

          0

          0.00

          0

          0.00

           Other

          66

          11.44

          30

          6.02

          6

          4.29

          18

          1.36

          0

          0.00

           No response

          144

          24.96

          68

          13.65

          11

          7.86

          107

          8.06

          2

          5.87

          All percentages are weighted for non-response, to ensure there are representative of the initial. The percentage cannot be derived from the absolute unweighted absolute numbers.

          According to the responding physicians, when an end-of-life decision or an explicit life-prolonging decision was made, 16% of persons had expressed at some point a wish to hasten death, although only 1.7% had explicitly requested euthanasia. The decision was made at the patient's explicit request in almost 15% of cases. The greater the likelihood that the decision would hasten death, the higher the percentage of persons who had expressed a wish to hasten death (from 8% for those with a treatment withheld to 38% for those with a medication given to deliberately hasten death) or who requested euthanasia (0.5 to 17%).

          When an end of life decision or an explicit life-prolonging decision was made and when the patient was incompetent, 1.5% of the persons had expressed their wishes through written advance directives. For the responding physicians, these advance directives were an important part of the decision in 72% of cases. 50% of patients had appointed a trusted third party, who took part in discussions about decisions to be made at later stages of the disease in 90% of cases. The decisions were discussed in 45% of cases with colleagues and in 31% of cases with nursing staff members. No such discussion (either with colleagues and/or nursing staff, and/or described as a part of a “collective" process) was reported in 14% of cases. These figures varied according to the type of decision: discussions with colleagues, family, or trusted third party were more frequent when decisions were more likely to hasten death (Table 4).

          When a drug was administered to deliberately hasten death on the patient’s explicit request, this request was repeated 8 times out of 11, and an explicit request for euthanasia was made in 6 cases. When the sole decision was to prolong life, it was at patient’s explicit request in 4% of the cases.

          Among the 55 explicit requests for euthanasia reported by the physicians, 6 were granted, whereas in 44 cases the physician chose to intensify the alleviation of symptoms, and in 1 case no decision was reported, except for doing everything possible to prolong the life.

          For almost half of the physicians, “deep sedation for distress in terminal phase” was the term that best described the decision to deliberately administer a medication to hasten death; much less frequently “symptom treatment” or “non-treatment decision”. Only 5 physicians reported “euthanasia”.

          Discussion and conclusions

          Main findings

          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 [13].

          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 [4]. 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, 1527] 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 [28], 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 [29] 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 [4] and more recent results in Belgium [30] and the Netherlands [31], 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 [17] 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 [1]. 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 [1].

          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.

          Conclusion

          In conclusion, these results provide an overview of end-of-life medical decisions in France, three years after the 2005 regulations were enacted, and for the first time on a large sample representative of all kinds of deaths. They are objective results in the context of the current legislation. They will help medical authorities and policy makers to examine how the act of parliament is applied and to understand more clearly which features of the current law are difficult to comply with. They will inform and assist the current public debate on this important topic. They will also serve as a baseline to investigate future changes.

          Declarations

          Acknowledgements

          This survey could not have been done without the financial support of the Institut National dEtudes Démographiques and the Health Ministry’s Direction Générale de la Santé (represented by A. Fontaine and E. Gaillard).

          We would like to thank:

          - The survey’s steering committee for their support and constructive discussions throughout the design and first analysis of the survey (Piernick Cressard and Francois Stefani of the Conseil National de lOrdre des MédecinsNational medical council -, Eric Jougla, Albertine Aouba, Grégoire Rey of CepiDc at Institut national de la Santé et de la Recherche médicale - French national Institute of health and medical research-);

          - Chantal Cases, Director of Ined for her constant support throughout the survey and her advice on data analysis;

          - Our “trusted third party” partners Jeanne Fresson of the Department of Medical Information at the Maternité Universitaire de Nancy and Epiconcept for the Internet response channel;

          - INED’s surveys department, which was the pillar for data collection, and Amandine Stephan for her contribution in coordinating the survey;

          - INED’s administration; IT department and statistical methods department for their involvement in different aspects of this project;

          - Johan Bilsen and Joachim Cohen from the End-of-life Care research group at the Vrije universiteit Brussel for their advice on the design of the survey;

          - Françoise Riou for her comments on the manuscript

          - All those who have been involved in the different steps of this survey (questionnaire testing, pilot survey, data capture…)

          And of course, all our thanks and gratitude to all the physicians who gave their time to take part in the survey.

          Authors’ Affiliations

          (1)
          Institut National d’Etudes Démographiques
          (2)
          Australian Demographic and Social Research Institute, Australian National University
          (3)
          Robert Debré Hospital, Assistance Publique-Hôpitaux de Paris
          (4)
          Observatoire National de la Fin de Vie
          (5)
          Jean Minjoz Hospital

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          32. Pre-publication history

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          © Pennec et al.; licensee BioMed Central Ltd. 2012

          This article is published under license to BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://​creativecommons.​org/​licenses/​by/​2.​0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.