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Sedation at home for terminally ill patients
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ORIGINAL ARTICLE
Sedation at home for terminally ill patients夽 Sédation à domicile des malades en phase terminale Eymeric Jacques a,1, Dominique Grouille a,∗, Danielle Galinat b, Christian Delpeyroux c, Marcel-Louis Viallard d,e, Bertrand Sardin a, Gérard Terrier a a
Service d’accompagnement et de soins palliatifs, pôle clinique médicale, CHU Dupuytren, 2, avenue Martin-Luther-King, 87042 Limoges cedex, France b Hospitalisation à domicile, santé service Limousin, 20, rue de la Perdrix, 87000 Limoges, France c Cabinet de médecine, 20, rue du Maréchal-Juin, 87100 Limoges, France d EA 4569, laboratoire d’éthique médicale et de médecine légale, université Paris Descartes, Sorbonne Paris Cité, 45, rue des Saints-Pères, 75006 Paris, France e Équipe de médecine palliative néonatale et pédiatrique, hôpital Necker Enfants-Malades, AP—HP, 149, rue de Sèvres, 75015 Paris, France Received 16 August 2013; received in revised form 17 September 2013; accepted 23 September 2013
KEYWORDS Palliative medicine; Terminal phase; Distress; Refractory symptom; Suffering
夽 ∗ 1
Summary Context. — Palliative care provided by family physicians at home for end of life patients is becoming more frequent. During terminal stages, sedation can be a treatment necessitated by acute distress or refractory symptoms. Goals of study. — Our study aimed to show the elements facilitating or hindering setting up sedation by the treating physician for terminal stage patients at home. A practical goal was to help optimize setting up such care in Haute-Vienne (France), particularly through adapted training. Method. — We carried out a descriptive study in March 2013. A questionnaire was mailed to all general practitioners in Haute-Vienne. Results of quantitative variables were compared with a Student test and those of qualitative variables through a Chi2 test or a Fisher exact test. Results. — One hundred and seventy-one questionnaires (42% of contacted physicians) were usable. In our sampling, 54% of physicians had already done a home sedation; 74.69% of
La version franc ¸aise de cet article est disponible en ligne (voir l’annexe à la fin du texte). Corresponding author. E-mail address: [email protected] (D. Grouille). Photo.
1636-6522/$ — see front matter © 2014 Published by Elsevier Masson SAS. http://dx.doi.org/10.1016/j.medpal.2013.09.002
Please cite this article in press as: Jacques E, et al. Sedation at home for terminally ill patients. Médecine palliative — Soins de support — Accompagnement — Éthique (2014), http://dx.doi.org/10.1016/j.medpal.2013.09.002
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E. Jacques et al. physicians who had never done it,were considering it. The three most important facilitating elements were: training for 96.40%, advanced directives for 93.49% and help in setting up a sedation by a mobile palliative care team for 88.27%. The three most important hindering elements were: the difficulty in doing a collegial procedure at home for 78.82%, a sense of lack of mastery for 77.38%,and the coordination difficulties between the various players involved for 49.41%. Only 35% of physicians had already had some palliative care training. Discussion. — Fundamental problems raised by home sedation have been investigated in particular as concerns the patient’s entourage, the coordination of care team members and emergency situations. Conclusion. — Improvement of care through home sedation could be obtained with training and supervision of such care. The mobile palliative care and home hospitalization teams from the Limoges University Hospital are actors who can facilitate implementing such training. © 2014 Published by Elsevier Masson SAS.
MOTS CLÉS Médecine palliative ; Phase terminale ; Détresse ; Symptômes réfractaires ; Souffrances
Résumé Contexte. — La prise en charge palliative des malades par les médecins généralistes se développe lors des fins de vie à domicile. Durant la phase terminale, la sédation peut être une thérapeutique nécessaire pour traiter les symptômes réfractaires et les détresses aiguës. Objectif de l’étude. — Notre étude visait à mettre en évidence les éléments facilitateurs et freinateurs à la mise en place d’une sédation par les médecins traitants lors d’une phase terminale à domicile. Son objectif pratique était d’aider à rendre optimale la réalisation de cette thérapeutique en Haute-Vienne, notamment grâce à la mise en place d’une formation adaptée. Méthode. — Nous avons réalisé une étude descriptive en mars 2013. Un questionnaire a été envoyé par voie postale à tous les médecins généralistes de la Haute-Vienne. Les résultats des variables quantitatives ont été comparés par test de Student et ceux des variables qualitatives par de test du Chi2 ou test exact de Fisher. Résultats. — Cent soixante et onze questionnaires (42 % des médecins contactés) ont pu être exploités. Dans notre échantillon, 54 % des médecins avaient déjà pratiqué une sédation à domicile, 74,69 % des médecins ne l’ayant jamais pratiqué l’avaient déjà envisagée. Les trois éléments facilitateurs les plus importants étaient : la formation à 96,40 %, les prescriptions anticipées personnalisées à 93,49 % et l’aide à la mise en place par une équipe mobile de soins palliatifs à 88,27 %. Les trois freins les plus importants étaient: la difficulté à réaliser une procédure collégiale à domicile à 78,82 %, le manque de maîtrise à 77,38 % et la difficulté de coordination entre les différents acteurs à 49,41 %. Seulement 35 % des médecins avaient déjà rec ¸u une formation en soins palliatifs. Discussion. — Des problématiques fondamentales posées par la sédation à domicile ont été plus particulièrement étudiées comme celles de l’entourage du patient, de la coordination des partenaires et des situations d’urgence. Conclusion. — L’amélioration de la prise en charge de la sédation à domicile pourrait être obtenue grâce à la formation à et l’encadrement de cette pratique. Les hospitalisations à domicile et les équipes mobiles de soins palliatifs du CHU de Limoges sont des acteurs pouvant faciliter la mise en œuvre de cette amélioration. © 2014 Publi´ e par Elsevier Masson SAS.
Introduction Sedation is the search, through the means of medication, of a decrease of vigilance that can reach loss of consciousness. Its goal is to diminish or abolish the perception of a situation deemed unbearable by the patient when all available and adapted means for the situation have been offered and/or enacted without obtaining the expected relief. Sedation can be used in an intermittent, transitory or continuous way [1,2]. Many professionals including the ones in palliative care, especially among the members of the Société franc ¸aise
d’accompagnement et de soins palliatifs (SFAP: French society for palliative care and nursing), have worked for the last 10 years on the issue of sedation. Recommandations have been elaborated and refined regularly to ensure that the use of sedation in a setting of terminal phase distress conforms to ethics [1—6]. The indications retained in this published formal consensus are refractory symptoms, in particular physical and moral suffering experienced as unbearable by the patient, (‘‘total pain’’ in the English literature), and life threatening distress with no specific treatment options (i.e. asphyxia or catastrophic hemorrage in ENT or pulmonary end stage cancers, so called refractory symptoms). The recommanded medication for a sedation is midazolam (Hynovel® , Buccolam® ), for it is usable intravenously or
Please cite this article in press as: Jacques E, et al. Sedation at home for terminally ill patients. Médecine palliative — Soins de support — Accompagnement — Éthique (2014), http://dx.doi.org/10.1016/j.medpal.2013.09.002
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Sedation at home for terminally ill patients subcutaneously (even per os or intrarectally in children). Its effect is rapidly reversible (half life 2 hours intravenously). Titration and maintenance doses are clearly defined in the recommendations to avoid any slippage [1,2]. Midazolam is an anxiolytic drug at low doses, anxiolytic and sedating at average doses, hypnotic at high doses. It is recommanded that deciding on a sedation be done after a collegial discussion integrating the patient’s consent when it can be obtained. If the patient cannot give consent or express his wishes, then the decision follows a collegial procedure, taking into account eventual advanced directives and/or the advice of the person with medical power of attorney or, if none, of relatives. Sedation is not an appropriate answer to a request by relatives or professionals to hasten death, if the terminal stage is prolonged. The last point that is specified in the published expert consensus is that sedation does not correspond to a specific level of consciousness, but rather to a range of consciousness alterations that can reach loss of consciousness. The goal is to seek the minimal efficient dose that decreases even stops, if feasible, the situation experienced as unbearable, without necessarily seeking deep drowsiness [3]. Let us note that the law relating to patient’s rights and end of life situations called the Leonetti Law [7—11] evokes sedation without naming it and without a recommendation for a collegial procedure: If a physician realises that he/she can only relieve the suffering of a person in advanced or terminal stage of a an incurable or severe illness, whatever its cause, by using a treatment that may shorten life as a side effect, he/she must inform the patient, the power of attorney, the family or, relatives, the case being. The procedure followed is documented in the medical chart. Currently more people die in the hospital than at home. This goes against the wishes of French people who wish for an end of life at home [12]. Furthermore, recent studies have shown a lack of knowledge of palliative medicine (both its methods and services available) by family physicians [13—17]. Then, what about sedation? The goal of our study was to identify the factors, which would allow an improvement of sedation at home for terminal phase distress. This improvement was aiming both the indications, the decision-making process, the setting-up and monitoring of a sedation. To that end, family physicians were questioned about their experiences and their expectations of such a treatment. This was the topic of the first part of this study. In a second part, we analyzed the key points, which would enable the development of home sedation in the best technical and ethical conditions.
3 of the study and a stamped envelope. The questionnaire was elaborated with family physicians, with the staff from the home hospitalisation team, Santé service Limousin and the mobile palliative care staff from the Limoges teaching hospital. It was sent via regular mail in March 2013 to all family physicians in the Haute-Vienne region, which is 407 physicians.
Questionnaire It explores first the general knowledge and experience physicians have of sedation (Appendix A). Next we have tried to determine if some variables created the difficulty in implementing home sedation. We listed seven items, which could modify such implementation: • the lack of technical knowledge for sedation; • the lack of time; • the difficulty in setting up a collegial procedure at home; • the difficulty coordinating home hospitalisation, the treating physician, the non-hospital based care team and the mobile palliative care team; • too heavy a responsibility; • the inability to deal with end of life; • the fear of hastening death. We also tried to determine the variables, which could facilitate the implementation of home sedation. We have listed six parameters: • training; • the existence of detailed advanced directives; • the existence of a technical brochure on sedation in the patient’s home; • the assistance for implementation at home by the mobile palliative care team; • coordination with a 911 call center to ensure continuity of care; • the availability 24/7 of medical telephone assistance Last, the questionnaire especially concentrates on the family physician’s needs for education.
Statistical analysis Results of quantitative variables are presented as the mean plus or minus standard deviation, minimum, maximum and median. Those of qualitative variables are expressed as frequencies and percentages. Comparison of qualitative variables between two groups were done by Chi2 test or Fischer exact test depending on theoretical cohort numbers and on the number of classes in the studied variables. The distributions of quantitative variables have been compared with a Student’s t-test. The chosen level of significance for all statistical analyses was 0.05.
Results Material and methods Study type The study is a descriptive investigation based on a semiclosed questionnaire sent with a letter explaining the goals
Response rates Out of 407 physicians, 174 returned the questionnaires (42.75%); 171 questionnaires were usable and constituted our analysis basis.
Please cite this article in press as: Jacques E, et al. Sedation at home for terminally ill patients. Médecine palliative — Soins de support — Accompagnement — Éthique (2014), http://dx.doi.org/10.1016/j.medpal.2013.09.002
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Physicians characteristics Gender Sixty-three percent were women and 37% men.
Age The mean age of physicians was 51.83 years; minimum age was 28 years, maximum 71 years and a median of 55 years.
Practice location
(43%). We observed a statistically significant difference (P = 0.00021) when comparing sedation and practice location: physicians in a rural location (80%) implemented more sedation than those practicing in an urban location (45%) and a semi rural location (51%). We also observed an almost significant difference (P = 0.0524) when comparing practice mode and sedation: solo practitioners implemented more sedations (63%) than group practitioners (47%). Fifty-eight percent of physicians who had done a home sedation had done so in a home hospitalisation context.
Forty-three percent practiced in an urban location, 30% in a semi rural and 22% in a rural location.
Sedation fro acute respiratory distress in a home hospitalisation
Practice mode
This concerned 56% of responses.
Fifty-six percent of physicians were in group practices and 44% in a solo practice.
Practice type Eighty-three percent of physicians had a private practice only position and 17% had a mixed practice mode (both private practice and a hospital practice).
Sedation for refractory symptoms in a home hospitalisation This concerned 80% of responses. Home sedations were more often implemented for refractory symptoms than for respiratory distress.
Treatments used Use of home hospitalisation Ninety-seven percent of physicians had taken care of patients in a home hospitalisation setting.
Training in palliative care Thirty-five percent of physicians have had training in palliative care. They benefited from it as part of: • initial medical training: 7.02%; • university or interuniversity diplomas: 7.60%; • evening lecture continuous medical training: 11.11%; • day long continuous medical education: 7.60%; • two day long continuous medical education: 3.51%.
Sedation Knowledge of the sedation principle in palliative medicine Seventy-eight percent of physicians knew the principle of sedation in palliative medicine.
Legal aspects Eighty-eight percent knew that this practice is authorized by law.
Is sedation disguised euthanasia? Seventy-six percent of practitioners thought that sedation was not a disguised form of euthanasia. Yet, almost a quarter of them assimilated sedation to euthanasia.
Implementation of sedation in a terminal stage at home Fifty-four percent of physicians had already done a home sedation in a terminal stage setting. When correlating this implementation with the practitioner’s gender, we found a statistically significant gender difference (P = 0.0372): women implemented more home sedations (60%) than men
Midazolam was the first molecule used by 42.11% of responders. In 20%of cases, morphine was used alone for sedative purposes. The association of a morphine-like compound, pethidine (Dolosal® ) with two neuroleptics, chlorpromazine (Largactil® ) and promethazine (Phenergan® ) was still used by 6.32% of physicians.
Physician’s wishes for implementing sedation Some physicians, though having never done a home sedation, found an indication for it. We tried to evaluate that, according to the two indications recommanded by the expert consensus panel, namely refractory symptoms and distress. This section of the questionnaire was reserved exclusively to physicians who had never done a home sedation: • wish for sedation for acute terminal distress: 67% of answers; • wish for sedation for refractory symptoms: 68% of answers. We realized that 23.31% of physicians who had never done a home sedation in a terminal stage wished to never initiate one. The wishes of practitioners for implementing sedation were almost identical for acute distress and refractory symptoms.
Hindrances The results are summarized in Table 1: • lack of mastery: more than 75% of respondents felt they were technically not competent to implement a sedation and considered that a hindrance; • lack of time: this was not considered a hindrance by 54.12% of physicians; • difficulty in setting up a collegial procedure at home: this factor is the principal hindrance to home sedation for 78.82% of family physicians; • difficulty in coordinating the different team members: for responder family physicians, difficulty in team coor-
Please cite this article in press as: Jacques E, et al. Sedation at home for terminally ill patients. Médecine palliative — Soins de support — Accompagnement — Éthique (2014), http://dx.doi.org/10.1016/j.medpal.2013.09.002
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Sedation at home for terminally ill patients Table 1
5
Hindrances to home sedation.
Lack of expertise Lack of time Difficulty in setting up a home collegial procedure Difficulty coordinating all people involved Too heavy a responsibility Inability to broach end of life Fear of hastening death
Yes, completely, %
Rather yes, %
Rather no, %
No, %
37.50 18.82 37.06 18.24 11.18 3.55 2.35
39.88 27.06 41.76 31.18 23.53 11.24 11.76
18.45 41.18 16.47 37.06 42.94 46.75 40.00
4.17 12.94 4.71 13.53 22.35 38.46 45.88
dination was the third most important hindrance, though 50.59% of them did not consider it as such; • too heavy a responsibility: implementing and managing a home sedation is not a real hindrance for 65.29% of family physicians; • inability to approach end of life issues: we note that the inability to approach end of life issues was the second least important hindrance with 85.21% of negative answers; • fear of hastening death: we note that the fear of hastening death was the least important hindrance with 85.88% of negative answers. Overall the three most important hindrances were the lack of technical expertise, the difficulty in setting up a collegial procedure at home and the difficulty in coordinating team members.
Facilitating factors Results are reported in Table 2: • training: we note that for 96.40% of physicians training was a factor facilitating the setting up of a home sedation; • personalised advance prescriptions: this was the second facilitating element in 93.49% of responses; • home availability of a technical information sheet on sedation: such availability was a facilitating factor for 57% of doctors; • home set up help by the mobile palliative care team: 88.27% of physicians considered this a facilitating element; • coordination through the 911 network for continuity of care:55.02% of physicians considered this a facilitating factor; • 24/7 telephone medical help availability: this was a facilitating factor for 85,71% of responders. According to the family physicians the three most facilitating elements were training, personalized advance
Table 2
prescriptions and the help of the mobile palliative care team.
Initiating sedation in a home hospitalisation setting Results are reported in Table 3. We have listed three possible situations: • initiation of home sedation seemed feasible alone to 57.48% of physicians; • initiation with the help of the mobile palliative care team was the preferred choice for 96.4% of physicians; • if sedation was already in place, 97.6% of physicians felt capable of continuing or modifying it.
Need for information and training Results are reported in Tables 4 and 5. Six topics proposed in the questionnaire were endorsed: • French Palliative Care Society recommendations on sedation; • legal frame of sedation; • knowledge of the various team members and their coordination; • indications for terminal stage sedation; • available therapeutic tools for home sedation; • actual titration using midazolam (Hypnovel® ). Indeed, all the topics were considered useful by practitioners with the lowest rating at 87.96% for legal aspects. The practical set up of a midazolam titration was the most sought by physicians, with 93.86% of favourable answers. Starting with a proposition for three training formats (one evening, one day seminar, two day seminar) and three helper formats (guidelines, technical information sheet, internet site), we noticed that family physicians ask for the combination of an evening training session (71.07%), a guideline sheet (90.97%) and a technical information sheet, associated with sedation prescriptions (92.99%).
Facilitators for home sedation.
Training Presence of detailed advance prescriptions Presence at home of a technical sheet on sedation Help in home set up by the mobile palliative care team Coordination with the 911 center for care continuity Availability of medical telephone help 24/7
Yes, completely, %
Rather yes, %
Rather no, %
No, %
63.47 57.40 44.64 50.00 16.87 43.45
32.93 36.09 33.93 38.27 39.15 42.26
1.80 2.96 14.88 8.64 34.34 10.12
1.80 3.55 6.55 3.09 9.64 4.17
Please cite this article in press as: Jacques E, et al. Sedation at home for terminally ill patients. Médecine palliative — Soins de support — Accompagnement — Éthique (2014), http://dx.doi.org/10.1016/j.medpal.2013.09.002
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Initiation of a home sedation.
Initiation alone Initiation with the mobile palliative care team Continuing an existing sedation, adjusting it if necessary
Table 4
Yes, completely, %
Rather yes, %
Rather no, %
No, %
27.54 58.08 58.68
29.94 38.32 38.92
31.74 2.40 1.20
10.78 1.20 1.20
Information expectations.
Recommendations by the formal expert consensus Legislation on sedation Knowing involved people/coordination Indication of sedation in terminal stages Usable therapeutics for home sedation Implementing a midazolam titration
Yes, completely, %
Rather yes, %
Rather no, %
No, %
52.15 46.39 40.72 47.27 58.68 52.76
39.26 41.57 49.70 41.21 37.13 41.10
5.52 9.04 7.19 8.48 2.40 3.07
3.07 3.01 2.40 3.03 1.80 3.07
Discussion
(Do they feel more ‘autonomous’ in that realm or is it lack of time to answer?)
Answer characteristics Key factors in home sedation
Response rate The 42.75% response rate shows an interest on the part of family physicians in palliative care. The very fact of filling out questionnaires reflects their expectations in that area, in particular concerning sedation, with a goal of helping them in daily practice.
Studied population Gender Women answered more in our study than men (63%). This is peculiar in our Limousin area where family physicians are two third men and one third women. We noticed as well that women set up the most home sedations (60% of them).
Age The average age (51.83 years) corresponds to the average age of French family physicians (51.80 years) [18]. Our sampling is thus representative of the medical population for that variable.
Practice location We noticed that more urban location physicians (48%) answered our study than rural location physicians (22%). Yet this last category implements the most home sedations (80%). It is thus surprising that so few physicians answered our study as they use this therapy more frequently.
Table 5
Which are the seven crucial points allowing setting up a home sedation in the best conditions?
Social environment, a key factor The social environment is a determining factor for a return to home; it is not impossible if problematic but will necessitate more resources and a reinforced coordination around the patient. The absence of caretakers can be replaced by home-helpers or home nurses but this will be the financial responsibility of the patient. Care provided by helpers is a daily task aimed at the patient’s comfort, hygiene, meals and the needs of living quarters such as cleaning, household chores etc. . . It is mostly people in the 45 to 65 years age group who assume such caretaker roles, in particular women who occupy a central place [19]. The helper is not necessarily the most available person, but the one who feels the most capable of such a role. At the beginning of home care, the helpers do not really know what they commit to, nor for how long [20]. It is, when confronted with the realities of end of life home care, that they progressively discover what is implied and what upheaval it creates in their own lives. Such care is very time consuming and places relatives as caretakers in a
Training expectations.
Evening training One day seminar Two days seminar A guideline sheet A technical sheet of sedation prescriptions A website
Yes, completely, %
Rather yes, %
Rather no, %
No, %
38.99 20.53 14.00 54.84 57.96 24.16
32.08 35.10 16.67 36.13 35.03 32.22
15.72 33.11 48.67 5.81 3.18 24.16
13.21 11.26 20.67 3.23 3.82 19.46
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Sedation at home for terminally ill patients singular relationship to the patient’s body. It is not easy for the patient and relatives, but in the process a new relation of trust can be established. So that an end of life can happen at home in optimal conditions, the surroundings must be adapted. Contrary to hospitals, home is by definition not conceived for medical care. It must often be rearranged so that a patient can live comfortably. Furthermore, the presence of medical equipment, medications should not alter the house irreversibly. Most difficulties encountered by relatives have to do with the patient’s pain and uncomfortable symptoms [21]. This total involvement for relatives has as a consequence a suffering and often a feeling of exhaustion [22—25]. This can manifest itself in care, but it is most often in the immediate aftermath of death that the most important exhaustion symptoms appear [17].
Obstacles to be lifted A particular trust relationship exists most often between patients and the chosen family physician. Experience shows us that for physicians a long term relationship makes them more readily accept to take care of an end of life at home. This decision is written in a care continuum, and many experience it as a kind of responsibility. For patients, the physician must have availability, ‘humanity’ and technical knowledge. For relatives and the patient, it is very important to be able to reach the physician. They also ask that he/she be efficient and technically competent to solve eventual problems at home. Sadly the availability of family physicians is less and less with a subsequent decrease in home visits. Yet a home end of life necessitates a lot of time and visits. Thus, 45.88% of physicians in our study related a lack of time as a hindrance to setting up home sedation. But only 18.82% felt it to be really hindering, which confirms our comments above. A lack of training in palliative care for family physicians has been evidenced by the National End-of-Life Observatory [17]. Pain relief seems now less of an issue; this leaves room for other palliative care improvement areas to develop through training programs. We found that only 35% of physicians had had some palliative care training, mostly through evening programs. This situation will progressively improve as a result of the introduction of a palliative care training module in the medical school curriculum in 2002; it was reinforced in 2013. In our study, the importance of training was found in 96.40% of practitioners who considered it a factor in setting up home sedation. This result is consistent with our 77.38% of respondents who underlined the lack of technical expertise as a hindrance to home sedation implementation. The psychological and emotional load linked to managing an end of life at home is important. This situation is more important to family physicians as they follow their patients for many years. Yet they manage these situations most of the time alone and isolated. There is no exchange time with other professionals or debriefing time such as we have in institutions. That is why the questionnaire clearly states, in the section on ‘‘hindrances to home sedation’’ the item ‘‘inability to broach end of life’’. But in the study it was not a hindrance to home sedation for 85.21% of physicians.
7 Currently the family physician is presented as the ‘central axis’ in the health care system, often overwhelmed by responsibilities. Yet, in parallel to this, patients with terminal illness are almost exclusively cared for at the hospital; it is then difficult for a physician to reinvest himself in the care of a patient he has not followed. At this time, more and more end of life care is provided by home hospitalisation services who can guarantee a 24/7 availability for continuity of care. This results in doubling medical responsibility, on the one hand that of the physician, on the other that of the medical home hospitalisation team. These services provide support in coordination and clinical expertise, which allows the family physician to be less the center of care provision, yet stay informed and practice in less arduous conditions. The role of ‘orchestra conductor’ reflects a classical ‘family’ physician image but not the reality of medical practice functioning in France nowadays. In the course of managing an end of life patient, there is a succession of referring doctors one of whom is, at best, the family physician. But he has the monopoly of prescriptions, despite a frequent delegation of that function to the physician in charge of the home hospitalisation team. It is he who takes important decisions such as request for extra help, hospitalisation, etc. Given the current practice of general medicine, it is the physician’s best interest to stay in the center of end of life care, without being the ‘central axis’, based on existing local resources. In our study, 65.29% of doctors do effectively not see responsibility as a hindrance to sedation.
Coordination of team partners In Haute-Vienne, coordination of end of life care occurs between the teaching hospital and its two palliative care mobile teams, the treating physician, ancillary staff and usually a home hospitalisation service. In effect, the practice of sedation necessitates logistical and material means that are often difficult to obtain in cities (midazolam only available through a hospital pharmacy, continuous electronic injection equipment, regular visits through the day by care team members, etc.). Setting up a home hospitalisation enables us to provide equipment, medications and to coordinate the different people involved. Coordination is a function requiring particular competencies all the more so that end of life situations are often complex clinically, socially and ethically. This function is heavy and tends to be professionalized nationwide. We found that for 50.59% of physicians, the difficulty in coordination between different members is a hindrance to setting up home sedation. So, if the treating physician no longer wishes to be the ‘‘central axis’’ person, who is to assume the care coordination role? Taking care of a person at the end of life requires an ‘upstream’ organisation starting at the hospital. For the hospital team must no longer envision care as fighting an illness but see care in light of time and quality of remaining life. If return to home is not organised properly ahead of time, taking into account the various factors at play (medical ones, adapted environment, relatives capable of assuming the difficulties of home maintenance care), a patient has many chances of being rehospitalised in the short term. In case of difficulties, relatives taking care of the patient must know exactly whom to reach. It is essential that continuity of care be guaranteed to maintain end of life
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patients at home. Indeed, in city settings, the permanence of care has become insufficient, as physicians can no longer assume full night on-call. A relay has been taken the hospitals or other entities, which provide 24/7 access to continuous care. In the department of Haute-Vienne, this consists of the 911 line, of the telephone assistance linked to the two home hospitalisation teams and of the on-call physician for the Limoges teaching hospital. Coordination through 911 calls allows us to handle acute distress situations at home in the absence of coverage by the treating physician, especially at night. The 911 center is informed of the list of patients in home end of life situations for whom no hospitalisation or resuscitation needs to be provided, but for whom symptomatic or sedation treatment can be necessary. Such coordination already exists thru the mobile palliative care teams at the Limoges Hospital but, based on our experience, will need to be developed.
lag for taking care of them and prevent inappropriate rehospitalisations. Advance personalised prescriptions are considered an important help for sedation by family physicians (93.49%). They also give reassurance to patients, their relatives and the professionals intervening at home. Unluckily, advance prescriptions are not a well known or widespread practice in non hospital medicine. Through its expertise and in concert with the patient (if possible), the family, the treating physician, the home hospitalisation coordinating physician and nurses, the mobile palliative care team can enable the broadcasting of such prescriptions for home settings; it can also, as seen in the previous section, alert the 911 center of the palliative status of a patient. Thus all physicians intervening at home will have all the elements needed for optimal care in emergency situations.
The problem of emergency situations
Collegial procedure
Emergency situations in a home end of life setting are a source of anguish for the patient and relatives. Two situations give particularly rise to anxiety: night time with the difficulty of accessing medical advice and the agonal phase where symptoms appear unbearable to relatives [17]. It is not because clinical signs are not considered a vital emergency for caretakers that they do not generate feelings of insecurity for relatives. Situations encountered by professionals at home can be complex and hazy. It is possible that symptoms cannot be alleviated. It then raises the question of the physician’s ethical and legal responsibilities if a decision for sedation needs to be made without a collegial procedure, or a decision to transfer a patient to the hospital. In all cases, advance directives must be sought systematically for they are a precious decision making helper. In any circumstance, the physician must preserve the patient’s dignity and guarantee the quality of end of life [26], but the lack of medical information at home is often problematic and does not always allow the most pertinent decisions. A complete medical record, including information on the palliative situation and procedures to follow allows an easy answer to these questions: whom to call if needed, how to handle problems and hospitalisation. Hospitalisation at end of life is not necessarily a bad thing, but it implies important consequences: a risk of death during transfer, a frequently and sometimes long stay in emergency, a setting that is not well adapted to patients at end of life. It is preferable to give to the people involved, thru training and anticipation, the capacity to serenely handle difficult situations at home and use the hospital as a last resort.
It is recommanded by an expert group, validated by the French High Healthcare Authority and endorsed as well by the French Palliative Care Society (SFAP) [1,2]. It allows setting up a process of ethical and medical reflexion on sedation. It necessitates gathering several intervening professionals, both medical and non medical. This procedure can be difficult to set up at home. This recommendation is justified by the consciousness altering properties of the treatment. But, to be ethical, several actors must participate, which is a challenge at home: • organising a discussion time for the physician, the outside care providers and the members of the mobile team; • time allowance often difficult to find in loaded schedules.
Personalised advanced prescriptions Personalised advance prescriptions allow to anticipate various acute distress situations that can occur for the patient. This allows better reaction time by the nurse’s application of prescriptions prior to the physician’s arrival. Indeed, the terminal stage is often accompanied by acute episodes and the onset of uncomfortable symptoms. These complications are often predictable according to underlying pathology. It is then interesting to anticipate them via advance personalised prescriptions, to decrease the time
The study confirms that this difficulty is the most important hindrance to sedation implementation for 78.82% of physicians. Creating specific national billing codes, both medical and non medical, for the time spent could make private practice people more available. This is reflected in the comments of a physician who states that ‘‘End-of-life care is very time consuming. There is no specific billing code. How can we spend 1 or 2 hours with a patient for 33 euros?’’
Practical aspects of a home sedation Sedation is a treatment adapted for very specific indications, which are defined in guidelines for home [2]. It is not often used in that context, but has already been implemented by 54% of physicians, a majority of which are women practicing in a rural setting and in a home hospitalisation situation. Knowledge about this treatment is well spread, as 88% of family physicians knew its authorization by law and 78% knowing its principles. Indications found consisted mostly of refractory symptoms (80% of physicians having used it did so for that indication) and 56% used it for acute distress situations. These numbers are in concordance with our practice observations where acute vital distress situations are less frequent. The compounds used mostly for home sedation are benzodiazepines in 62.12% of cases, in particular midazolam (42.11%). This reflects knowledge of the formal expert consensus validated by the French High Healthcare Authority and scientific societies. The use of compounds other than midazolam can be explained by its limited access in
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ambulatory medicine as confirmed by the comment of one physician: ‘‘the only problem is medication availability’’. When midazolam is not available, the use of other benzodiazepines (diazepam or clorazepate) is possible with the inconvenience of their more difficult handling especially in terms of duration of action and metabolite accumulation. In six answers we found the simultaneous use of Dolosal® , Largactil® and Phenergan® (‘DLP lytic cocktail’) which corresponds to older sedation formulas (Dolosal® was taken off the market in 2002). We must insist on the fact that neuroleptics are not adapted to these situations as they give a semblance of sedation. With these treatments, the patient seems quiet (sleepy, slow movements, stiff face, etc.) but in reality he remains conscious and, quite often, extremely anxious. This has been demonstrated long ago with EEG studies of patients taking neuroleptics and their stories told subsequently, especially with droperidol (Droleptan® ). [27,28]. We also noted the sole use of opioids in 20% of cases. Let us make note of the fact that morphine-like substances are antalgic molecules not sedating ones, though sedation may be observed, especially if overdosed. They can nonetheless be associated with midazolam in case of physical pain linked to the distress or to refractory symptoms. If benzodiazepines are inefficient, it is possible, after a mandatory anaesthesia consult, to use hypnotic molecules used in anaesthesia [2]. Furthermore, we noted that 31.5% of physicians wishing to initiate sedation think that it is disguised euthanasia, compared to 18% of those who have already done one. This difference may be the source of the reticence of physicians has in introducing such a treatment. These results sometimes evoke the wish to hasten death. Some comments by physicians point that way: ‘‘‘aggressive’ end of life care with the accord and wishes of families has always been done’’. Whatever the case, it has been proven that sedation does not shorten life, though that opinion is widespread in society and also among physicians [4,29]. Some factors thought to enable sedation set up by physicians stand slightly apart: training for 96.40%, advanced personalised prescriptions for 93.49% and the help of a mobile palliative care team for 88.27%. The three other factors are thought facilitating by more than half of the physicians. As far as implementing and managing a home sedation, 97.6% of practitioners feel capable of continuing an established sedation and of modifying it if needed. This confirms that this treatment can be developed by family physicians. That being the case, the initiation of a sedation seems more delicate, as 57.48% of physicians state they are able to do it alone whereas 96.4% prefer starting it with the assistance of the mobile palliative care team. This seems to indicate that initiating sedation scares physicians being alone, probably because of a lack of knowledge of the law, of the treatments and their indications (see information expectations in Table 4).
to physicians when taking care of a person at the end of life at home. Sedation is reserved for a few precise indications and in particular circumstances so that its home use is done safely and in a controlled way. Our study has shown that sedation has been done by 54% of responding physicians. They are most often women and family physicians practicing in a rural setting. Despite lack of prior experience, sedation has been considered by at least once by 74.69% of physicians. With these results, it is important to enable physicians to set this specific treatment up correctly in a reassuring reference frame and according to the recommendations of a formal expert consensus panel [1]. The ultimate goal of the study was to determine which levers can be used to help physicians implement a home sedation when needed. To this end, the determining elements are: training, advanced personalised prescriptions and the help of a mobile palliative care team. Only 35% of family physicians have had any palliative care training in their careers. To enable them to set up sedation, we evaluated their precise training needs and the steps for their implementation. Physicians ask for knowledge in the theoretical, practical and legal aspects of sedation. The favoured training format is an evening presentation, which allows easier availability and quick essential knowledge acquisition. We may consider distributing guideline sheets to physicians who wish for them. Technical information sheets may be systematically included in the medical record of home palliative care patients. Caring for an end of life person at home is often complex and is facilitated by the help of a home hospitalisation service. This entity, dedicated to non-hospital patients, makes hospital level care available to patients at home. Regarding compounds available for sedation, it allows access to midazolam and to the electronic equipment for continuous intravenous flow. On a human scale it allows multiple daily visits by the care team members; it allows care and monitoring, coordination between the different team members, an easier access to the mobile palliative care team and a 24/7-telephone availability. We think that we must evolve towards a more systematic implementation of the procedures required for sedation, as it allows a safer frame of work for the physician, the patient and their relatives. A regular update in therapeutics and pharmacology seems necessary as well. Such an evolution seems essential in the current societal context. If end of life at home is not handled better, especially by sedation for patients who need it, and for lack of wanting and knowing how to mobilise all modern medicine resources for a humanistic caring approach, the legislators may be more and more inclined, under various pressures, to decriminalise ‘medical help in dying’ that is assisted suicide even euthanasia [30].
Conclusion
Disclosure of interest
Though restricted to hospitals for a long time, sedation is for some years now, part of the range of therapies available
The authors declare that they have no conflicts of interest concerning this article.
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Appendix A. Supplementary data The questionnaire used in this study is available online at http://dx.doi.org/10.1016/j.medpal.2013.09.002.
Appendix B. Supplementary data The French version of this article is available online at http://dx.doi.org/10.1016/j.medpal.2013.09.002.
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E. Jacques et al. [14] Conseil national de l’ordre des médecins. Enquête auprès des médecins sur la fin de vie [survey of French physicians on the end of life]. Paris: Conseil national de l’ordre des médecins; 2013. Available at: http://www.conseil-national. medecin.fr/sites/default/files/sondage fin de vie fevrier 2013.pdf (accessed 19 July 2013). [15] Conseil national de l’ordre des médecins. Le conseil national de l’ordre des médecins prend position sur la fin de vie. Bulletin d’information de l’Ordre national des médecins 2013;28:5. [16] Sicard D. Penser solidairement la fin de vie. Commission de réflexion sur la fin de vie en France. Paris: La Documentation franc ¸aise; 2012. Available at: www.sante.gouv.fr (accessed 4 August 2013). [17] Observatoire national de la fin de vie. Vivre la fin de sa vie chez soi. Paris: Observatoire national de la fin de vie; 2013. Available at: http://www.ladocumentationfrancaise.fr/docfra/ rapport telechargement/var/storage/rapports-publics/ 134000186/0000.pdf (accessed 31 July 2013). [18] Caisse autonome de retraite des médecins franc ¸ais (Carmf). Statistiques cotisants : âge moyen des médecins généralistes franc ¸ais Demography of French practitionners; information on the Internet. Paris: Carmf; 2010. Available at: www.carmf.fr/doc/publications/infocarmf/58-2010/stat1.htm (accessed 4 August 2013). [19] Fukui S, Fujita J, Tsujimura M, Sumikawa Y, Hayashi Y. Predictors of home death of home palliative cancer care patients: a cross-sectional nationwide survey. Int J Nurs Stud 2011;48:1393—400. [20] Fontan MC. Les derniers jours à domicile. In: Hirsch E, editor. Fins de vie, éthique et société. Toulouse: Érès; 2012. p. 445—8. [21] Ishii Y, Miyashita M, Sato K, Ozawa T. Family’s difficulty scale in end-of-life home care: a new measure of the family’s difficulties in caring for patients with cancer at the end of life at home from bereaved family’s perspective. J Palliat Med 2012;15:210—5. [22] Landry-Dattée N, Théodore C, Velardo D. Accompagner la famille confrontée à la proximité de la mort d’un de ses membres. In: Hirsch E, editor. Fins de vie, éthique et société. Toulouse: Érès; 2012. p. 424—31. [23] Consoli SM. Violence et solitude dans l’expérience des fins de vie qui se prolongent. In: Hirsch E, editor. Fins de vie, éthique et société. Toulouse: Érès; 2012. p. 432—8. [24] Landry-Dattée N. Face à la durée, soutenir les familles. In: Hirsch E, editor. Fins de vie, éthique et société. Toulouse: Érès; 2012. p. 439—44. [25] Maillaud E. Long dying. Med Palliat 2009;8:181—4 [editorial, French]. [26] Conseil national de l’ordre des médecins. Code de déontologie médicale. Paris: Conseil national de l’ordre des médecins; 2012. Available at: http://www.conseil-national.medecin.fr/ article/le-code-de-deontologie-medicale-915 (accessed 28 February 2013). [27] Fléron MH. Droperidol. In: Gosgnach M, Chauvin M, Riou B, editors. Pharmacologie en anesthésie-réanimation. VélizyVillacoublay: Arnette;; 1998. p. 331—40. [28] Stoelting RK. Pharmacology and physiology in anesthetic practice. Philadelphia: J. B. Lippincott Company; 1991. p. 365—83. [29] Mercadante S, Porzio G, Valle A, Fusco F, Aielli F. Palliative sedation in patients with advanced cancer followed at home: a systematic review. J Pain Symptom Manage 2011;41:754—60. [30] Grouille D, Sardin B, Terrier G. Fin de vie : une sédation pour quels objectifs ? Rev Prat 2013;63:603—4.
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ORIGINAL ARTICLE
Sedation at home for terminally ill patients夽 Sédation à domicile des malades en phase terminale Eymeric Jacques a,1, Dominique Grouille a,∗, Danielle Galinat b, Christian Delpeyroux c, Marcel-Louis Viallard d,e, Bertrand Sardin a, Gérard Terrier a a
Service d’accompagnement et de soins palliatifs, pôle clinique médicale, CHU Dupuytren, 2, avenue Martin-Luther-King, 87042 Limoges cedex, France b Hospitalisation à domicile, santé service Limousin, 20, rue de la Perdrix, 87000 Limoges, France c Cabinet de médecine, 20, rue du Maréchal-Juin, 87100 Limoges, France d EA 4569, laboratoire d’éthique médicale et de médecine légale, université Paris Descartes, Sorbonne Paris Cité, 45, rue des Saints-Pères, 75006 Paris, France e Équipe de médecine palliative néonatale et pédiatrique, hôpital Necker Enfants-Malades, AP—HP, 149, rue de Sèvres, 75015 Paris, France Received 16 August 2013; received in revised form 17 September 2013; accepted 23 September 2013
KEYWORDS Palliative medicine; Terminal phase; Distress; Refractory symptom; Suffering
夽 ∗ 1
Summary Context. — Palliative care provided by family physicians at home for end of life patients is becoming more frequent. During terminal stages, sedation can be a treatment necessitated by acute distress or refractory symptoms. Goals of study. — Our study aimed to show the elements facilitating or hindering setting up sedation by the treating physician for terminal stage patients at home. A practical goal was to help optimize setting up such care in Haute-Vienne (France), particularly through adapted training. Method. — We carried out a descriptive study in March 2013. A questionnaire was mailed to all general practitioners in Haute-Vienne. Results of quantitative variables were compared with a Student test and those of qualitative variables through a Chi2 test or a Fisher exact test. Results. — One hundred and seventy-one questionnaires (42% of contacted physicians) were usable. In our sampling, 54% of physicians had already done a home sedation; 74.69% of
La version franc ¸aise de cet article est disponible en ligne (voir l’annexe à la fin du texte). Corresponding author. E-mail address: [email protected] (D. Grouille). Photo.
1636-6522/$ — see front matter © 2014 Published by Elsevier Masson SAS. http://dx.doi.org/10.1016/j.medpal.2013.09.002
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E. Jacques et al. physicians who had never done it,were considering it. The three most important facilitating elements were: training for 96.40%, advanced directives for 93.49% and help in setting up a sedation by a mobile palliative care team for 88.27%. The three most important hindering elements were: the difficulty in doing a collegial procedure at home for 78.82%, a sense of lack of mastery for 77.38%,and the coordination difficulties between the various players involved for 49.41%. Only 35% of physicians had already had some palliative care training. Discussion. — Fundamental problems raised by home sedation have been investigated in particular as concerns the patient’s entourage, the coordination of care team members and emergency situations. Conclusion. — Improvement of care through home sedation could be obtained with training and supervision of such care. The mobile palliative care and home hospitalization teams from the Limoges University Hospital are actors who can facilitate implementing such training. © 2014 Published by Elsevier Masson SAS.
MOTS CLÉS Médecine palliative ; Phase terminale ; Détresse ; Symptômes réfractaires ; Souffrances
Résumé Contexte. — La prise en charge palliative des malades par les médecins généralistes se développe lors des fins de vie à domicile. Durant la phase terminale, la sédation peut être une thérapeutique nécessaire pour traiter les symptômes réfractaires et les détresses aiguës. Objectif de l’étude. — Notre étude visait à mettre en évidence les éléments facilitateurs et freinateurs à la mise en place d’une sédation par les médecins traitants lors d’une phase terminale à domicile. Son objectif pratique était d’aider à rendre optimale la réalisation de cette thérapeutique en Haute-Vienne, notamment grâce à la mise en place d’une formation adaptée. Méthode. — Nous avons réalisé une étude descriptive en mars 2013. Un questionnaire a été envoyé par voie postale à tous les médecins généralistes de la Haute-Vienne. Les résultats des variables quantitatives ont été comparés par test de Student et ceux des variables qualitatives par de test du Chi2 ou test exact de Fisher. Résultats. — Cent soixante et onze questionnaires (42 % des médecins contactés) ont pu être exploités. Dans notre échantillon, 54 % des médecins avaient déjà pratiqué une sédation à domicile, 74,69 % des médecins ne l’ayant jamais pratiqué l’avaient déjà envisagée. Les trois éléments facilitateurs les plus importants étaient : la formation à 96,40 %, les prescriptions anticipées personnalisées à 93,49 % et l’aide à la mise en place par une équipe mobile de soins palliatifs à 88,27 %. Les trois freins les plus importants étaient: la difficulté à réaliser une procédure collégiale à domicile à 78,82 %, le manque de maîtrise à 77,38 % et la difficulté de coordination entre les différents acteurs à 49,41 %. Seulement 35 % des médecins avaient déjà rec ¸u une formation en soins palliatifs. Discussion. — Des problématiques fondamentales posées par la sédation à domicile ont été plus particulièrement étudiées comme celles de l’entourage du patient, de la coordination des partenaires et des situations d’urgence. Conclusion. — L’amélioration de la prise en charge de la sédation à domicile pourrait être obtenue grâce à la formation à et l’encadrement de cette pratique. Les hospitalisations à domicile et les équipes mobiles de soins palliatifs du CHU de Limoges sont des acteurs pouvant faciliter la mise en œuvre de cette amélioration. © 2014 Publi´ e par Elsevier Masson SAS.
Introduction Sedation is the search, through the means of medication, of a decrease of vigilance that can reach loss of consciousness. Its goal is to diminish or abolish the perception of a situation deemed unbearable by the patient when all available and adapted means for the situation have been offered and/or enacted without obtaining the expected relief. Sedation can be used in an intermittent, transitory or continuous way [1,2]. Many professionals including the ones in palliative care, especially among the members of the Société franc ¸aise
d’accompagnement et de soins palliatifs (SFAP: French society for palliative care and nursing), have worked for the last 10 years on the issue of sedation. Recommandations have been elaborated and refined regularly to ensure that the use of sedation in a setting of terminal phase distress conforms to ethics [1—6]. The indications retained in this published formal consensus are refractory symptoms, in particular physical and moral suffering experienced as unbearable by the patient, (‘‘total pain’’ in the English literature), and life threatening distress with no specific treatment options (i.e. asphyxia or catastrophic hemorrage in ENT or pulmonary end stage cancers, so called refractory symptoms). The recommanded medication for a sedation is midazolam (Hynovel® , Buccolam® ), for it is usable intravenously or
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Sedation at home for terminally ill patients subcutaneously (even per os or intrarectally in children). Its effect is rapidly reversible (half life 2 hours intravenously). Titration and maintenance doses are clearly defined in the recommendations to avoid any slippage [1,2]. Midazolam is an anxiolytic drug at low doses, anxiolytic and sedating at average doses, hypnotic at high doses. It is recommanded that deciding on a sedation be done after a collegial discussion integrating the patient’s consent when it can be obtained. If the patient cannot give consent or express his wishes, then the decision follows a collegial procedure, taking into account eventual advanced directives and/or the advice of the person with medical power of attorney or, if none, of relatives. Sedation is not an appropriate answer to a request by relatives or professionals to hasten death, if the terminal stage is prolonged. The last point that is specified in the published expert consensus is that sedation does not correspond to a specific level of consciousness, but rather to a range of consciousness alterations that can reach loss of consciousness. The goal is to seek the minimal efficient dose that decreases even stops, if feasible, the situation experienced as unbearable, without necessarily seeking deep drowsiness [3]. Let us note that the law relating to patient’s rights and end of life situations called the Leonetti Law [7—11] evokes sedation without naming it and without a recommendation for a collegial procedure: If a physician realises that he/she can only relieve the suffering of a person in advanced or terminal stage of a an incurable or severe illness, whatever its cause, by using a treatment that may shorten life as a side effect, he/she must inform the patient, the power of attorney, the family or, relatives, the case being. The procedure followed is documented in the medical chart. Currently more people die in the hospital than at home. This goes against the wishes of French people who wish for an end of life at home [12]. Furthermore, recent studies have shown a lack of knowledge of palliative medicine (both its methods and services available) by family physicians [13—17]. Then, what about sedation? The goal of our study was to identify the factors, which would allow an improvement of sedation at home for terminal phase distress. This improvement was aiming both the indications, the decision-making process, the setting-up and monitoring of a sedation. To that end, family physicians were questioned about their experiences and their expectations of such a treatment. This was the topic of the first part of this study. In a second part, we analyzed the key points, which would enable the development of home sedation in the best technical and ethical conditions.
3 of the study and a stamped envelope. The questionnaire was elaborated with family physicians, with the staff from the home hospitalisation team, Santé service Limousin and the mobile palliative care staff from the Limoges teaching hospital. It was sent via regular mail in March 2013 to all family physicians in the Haute-Vienne region, which is 407 physicians.
Questionnaire It explores first the general knowledge and experience physicians have of sedation (Appendix A). Next we have tried to determine if some variables created the difficulty in implementing home sedation. We listed seven items, which could modify such implementation: • the lack of technical knowledge for sedation; • the lack of time; • the difficulty in setting up a collegial procedure at home; • the difficulty coordinating home hospitalisation, the treating physician, the non-hospital based care team and the mobile palliative care team; • too heavy a responsibility; • the inability to deal with end of life; • the fear of hastening death. We also tried to determine the variables, which could facilitate the implementation of home sedation. We have listed six parameters: • training; • the existence of detailed advanced directives; • the existence of a technical brochure on sedation in the patient’s home; • the assistance for implementation at home by the mobile palliative care team; • coordination with a 911 call center to ensure continuity of care; • the availability 24/7 of medical telephone assistance Last, the questionnaire especially concentrates on the family physician’s needs for education.
Statistical analysis Results of quantitative variables are presented as the mean plus or minus standard deviation, minimum, maximum and median. Those of qualitative variables are expressed as frequencies and percentages. Comparison of qualitative variables between two groups were done by Chi2 test or Fischer exact test depending on theoretical cohort numbers and on the number of classes in the studied variables. The distributions of quantitative variables have been compared with a Student’s t-test. The chosen level of significance for all statistical analyses was 0.05.
Results Material and methods Study type The study is a descriptive investigation based on a semiclosed questionnaire sent with a letter explaining the goals
Response rates Out of 407 physicians, 174 returned the questionnaires (42.75%); 171 questionnaires were usable and constituted our analysis basis.
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Physicians characteristics Gender Sixty-three percent were women and 37% men.
Age The mean age of physicians was 51.83 years; minimum age was 28 years, maximum 71 years and a median of 55 years.
Practice location
(43%). We observed a statistically significant difference (P = 0.00021) when comparing sedation and practice location: physicians in a rural location (80%) implemented more sedation than those practicing in an urban location (45%) and a semi rural location (51%). We also observed an almost significant difference (P = 0.0524) when comparing practice mode and sedation: solo practitioners implemented more sedations (63%) than group practitioners (47%). Fifty-eight percent of physicians who had done a home sedation had done so in a home hospitalisation context.
Forty-three percent practiced in an urban location, 30% in a semi rural and 22% in a rural location.
Sedation fro acute respiratory distress in a home hospitalisation
Practice mode
This concerned 56% of responses.
Fifty-six percent of physicians were in group practices and 44% in a solo practice.
Practice type Eighty-three percent of physicians had a private practice only position and 17% had a mixed practice mode (both private practice and a hospital practice).
Sedation for refractory symptoms in a home hospitalisation This concerned 80% of responses. Home sedations were more often implemented for refractory symptoms than for respiratory distress.
Treatments used Use of home hospitalisation Ninety-seven percent of physicians had taken care of patients in a home hospitalisation setting.
Training in palliative care Thirty-five percent of physicians have had training in palliative care. They benefited from it as part of: • initial medical training: 7.02%; • university or interuniversity diplomas: 7.60%; • evening lecture continuous medical training: 11.11%; • day long continuous medical education: 7.60%; • two day long continuous medical education: 3.51%.
Sedation Knowledge of the sedation principle in palliative medicine Seventy-eight percent of physicians knew the principle of sedation in palliative medicine.
Legal aspects Eighty-eight percent knew that this practice is authorized by law.
Is sedation disguised euthanasia? Seventy-six percent of practitioners thought that sedation was not a disguised form of euthanasia. Yet, almost a quarter of them assimilated sedation to euthanasia.
Implementation of sedation in a terminal stage at home Fifty-four percent of physicians had already done a home sedation in a terminal stage setting. When correlating this implementation with the practitioner’s gender, we found a statistically significant gender difference (P = 0.0372): women implemented more home sedations (60%) than men
Midazolam was the first molecule used by 42.11% of responders. In 20%of cases, morphine was used alone for sedative purposes. The association of a morphine-like compound, pethidine (Dolosal® ) with two neuroleptics, chlorpromazine (Largactil® ) and promethazine (Phenergan® ) was still used by 6.32% of physicians.
Physician’s wishes for implementing sedation Some physicians, though having never done a home sedation, found an indication for it. We tried to evaluate that, according to the two indications recommanded by the expert consensus panel, namely refractory symptoms and distress. This section of the questionnaire was reserved exclusively to physicians who had never done a home sedation: • wish for sedation for acute terminal distress: 67% of answers; • wish for sedation for refractory symptoms: 68% of answers. We realized that 23.31% of physicians who had never done a home sedation in a terminal stage wished to never initiate one. The wishes of practitioners for implementing sedation were almost identical for acute distress and refractory symptoms.
Hindrances The results are summarized in Table 1: • lack of mastery: more than 75% of respondents felt they were technically not competent to implement a sedation and considered that a hindrance; • lack of time: this was not considered a hindrance by 54.12% of physicians; • difficulty in setting up a collegial procedure at home: this factor is the principal hindrance to home sedation for 78.82% of family physicians; • difficulty in coordinating the different team members: for responder family physicians, difficulty in team coor-
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Sedation at home for terminally ill patients Table 1
5
Hindrances to home sedation.
Lack of expertise Lack of time Difficulty in setting up a home collegial procedure Difficulty coordinating all people involved Too heavy a responsibility Inability to broach end of life Fear of hastening death
Yes, completely, %
Rather yes, %
Rather no, %
No, %
37.50 18.82 37.06 18.24 11.18 3.55 2.35
39.88 27.06 41.76 31.18 23.53 11.24 11.76
18.45 41.18 16.47 37.06 42.94 46.75 40.00
4.17 12.94 4.71 13.53 22.35 38.46 45.88
dination was the third most important hindrance, though 50.59% of them did not consider it as such; • too heavy a responsibility: implementing and managing a home sedation is not a real hindrance for 65.29% of family physicians; • inability to approach end of life issues: we note that the inability to approach end of life issues was the second least important hindrance with 85.21% of negative answers; • fear of hastening death: we note that the fear of hastening death was the least important hindrance with 85.88% of negative answers. Overall the three most important hindrances were the lack of technical expertise, the difficulty in setting up a collegial procedure at home and the difficulty in coordinating team members.
Facilitating factors Results are reported in Table 2: • training: we note that for 96.40% of physicians training was a factor facilitating the setting up of a home sedation; • personalised advance prescriptions: this was the second facilitating element in 93.49% of responses; • home availability of a technical information sheet on sedation: such availability was a facilitating factor for 57% of doctors; • home set up help by the mobile palliative care team: 88.27% of physicians considered this a facilitating element; • coordination through the 911 network for continuity of care:55.02% of physicians considered this a facilitating factor; • 24/7 telephone medical help availability: this was a facilitating factor for 85,71% of responders. According to the family physicians the three most facilitating elements were training, personalized advance
Table 2
prescriptions and the help of the mobile palliative care team.
Initiating sedation in a home hospitalisation setting Results are reported in Table 3. We have listed three possible situations: • initiation of home sedation seemed feasible alone to 57.48% of physicians; • initiation with the help of the mobile palliative care team was the preferred choice for 96.4% of physicians; • if sedation was already in place, 97.6% of physicians felt capable of continuing or modifying it.
Need for information and training Results are reported in Tables 4 and 5. Six topics proposed in the questionnaire were endorsed: • French Palliative Care Society recommendations on sedation; • legal frame of sedation; • knowledge of the various team members and their coordination; • indications for terminal stage sedation; • available therapeutic tools for home sedation; • actual titration using midazolam (Hypnovel® ). Indeed, all the topics were considered useful by practitioners with the lowest rating at 87.96% for legal aspects. The practical set up of a midazolam titration was the most sought by physicians, with 93.86% of favourable answers. Starting with a proposition for three training formats (one evening, one day seminar, two day seminar) and three helper formats (guidelines, technical information sheet, internet site), we noticed that family physicians ask for the combination of an evening training session (71.07%), a guideline sheet (90.97%) and a technical information sheet, associated with sedation prescriptions (92.99%).
Facilitators for home sedation.
Training Presence of detailed advance prescriptions Presence at home of a technical sheet on sedation Help in home set up by the mobile palliative care team Coordination with the 911 center for care continuity Availability of medical telephone help 24/7
Yes, completely, %
Rather yes, %
Rather no, %
No, %
63.47 57.40 44.64 50.00 16.87 43.45
32.93 36.09 33.93 38.27 39.15 42.26
1.80 2.96 14.88 8.64 34.34 10.12
1.80 3.55 6.55 3.09 9.64 4.17
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E. Jacques et al. Table 3
Initiation of a home sedation.
Initiation alone Initiation with the mobile palliative care team Continuing an existing sedation, adjusting it if necessary
Table 4
Yes, completely, %
Rather yes, %
Rather no, %
No, %
27.54 58.08 58.68
29.94 38.32 38.92
31.74 2.40 1.20
10.78 1.20 1.20
Information expectations.
Recommendations by the formal expert consensus Legislation on sedation Knowing involved people/coordination Indication of sedation in terminal stages Usable therapeutics for home sedation Implementing a midazolam titration
Yes, completely, %
Rather yes, %
Rather no, %
No, %
52.15 46.39 40.72 47.27 58.68 52.76
39.26 41.57 49.70 41.21 37.13 41.10
5.52 9.04 7.19 8.48 2.40 3.07
3.07 3.01 2.40 3.03 1.80 3.07
Discussion
(Do they feel more ‘autonomous’ in that realm or is it lack of time to answer?)
Answer characteristics Key factors in home sedation
Response rate The 42.75% response rate shows an interest on the part of family physicians in palliative care. The very fact of filling out questionnaires reflects their expectations in that area, in particular concerning sedation, with a goal of helping them in daily practice.
Studied population Gender Women answered more in our study than men (63%). This is peculiar in our Limousin area where family physicians are two third men and one third women. We noticed as well that women set up the most home sedations (60% of them).
Age The average age (51.83 years) corresponds to the average age of French family physicians (51.80 years) [18]. Our sampling is thus representative of the medical population for that variable.
Practice location We noticed that more urban location physicians (48%) answered our study than rural location physicians (22%). Yet this last category implements the most home sedations (80%). It is thus surprising that so few physicians answered our study as they use this therapy more frequently.
Table 5
Which are the seven crucial points allowing setting up a home sedation in the best conditions?
Social environment, a key factor The social environment is a determining factor for a return to home; it is not impossible if problematic but will necessitate more resources and a reinforced coordination around the patient. The absence of caretakers can be replaced by home-helpers or home nurses but this will be the financial responsibility of the patient. Care provided by helpers is a daily task aimed at the patient’s comfort, hygiene, meals and the needs of living quarters such as cleaning, household chores etc. . . It is mostly people in the 45 to 65 years age group who assume such caretaker roles, in particular women who occupy a central place [19]. The helper is not necessarily the most available person, but the one who feels the most capable of such a role. At the beginning of home care, the helpers do not really know what they commit to, nor for how long [20]. It is, when confronted with the realities of end of life home care, that they progressively discover what is implied and what upheaval it creates in their own lives. Such care is very time consuming and places relatives as caretakers in a
Training expectations.
Evening training One day seminar Two days seminar A guideline sheet A technical sheet of sedation prescriptions A website
Yes, completely, %
Rather yes, %
Rather no, %
No, %
38.99 20.53 14.00 54.84 57.96 24.16
32.08 35.10 16.67 36.13 35.03 32.22
15.72 33.11 48.67 5.81 3.18 24.16
13.21 11.26 20.67 3.23 3.82 19.46
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Sedation at home for terminally ill patients singular relationship to the patient’s body. It is not easy for the patient and relatives, but in the process a new relation of trust can be established. So that an end of life can happen at home in optimal conditions, the surroundings must be adapted. Contrary to hospitals, home is by definition not conceived for medical care. It must often be rearranged so that a patient can live comfortably. Furthermore, the presence of medical equipment, medications should not alter the house irreversibly. Most difficulties encountered by relatives have to do with the patient’s pain and uncomfortable symptoms [21]. This total involvement for relatives has as a consequence a suffering and often a feeling of exhaustion [22—25]. This can manifest itself in care, but it is most often in the immediate aftermath of death that the most important exhaustion symptoms appear [17].
Obstacles to be lifted A particular trust relationship exists most often between patients and the chosen family physician. Experience shows us that for physicians a long term relationship makes them more readily accept to take care of an end of life at home. This decision is written in a care continuum, and many experience it as a kind of responsibility. For patients, the physician must have availability, ‘humanity’ and technical knowledge. For relatives and the patient, it is very important to be able to reach the physician. They also ask that he/she be efficient and technically competent to solve eventual problems at home. Sadly the availability of family physicians is less and less with a subsequent decrease in home visits. Yet a home end of life necessitates a lot of time and visits. Thus, 45.88% of physicians in our study related a lack of time as a hindrance to setting up home sedation. But only 18.82% felt it to be really hindering, which confirms our comments above. A lack of training in palliative care for family physicians has been evidenced by the National End-of-Life Observatory [17]. Pain relief seems now less of an issue; this leaves room for other palliative care improvement areas to develop through training programs. We found that only 35% of physicians had had some palliative care training, mostly through evening programs. This situation will progressively improve as a result of the introduction of a palliative care training module in the medical school curriculum in 2002; it was reinforced in 2013. In our study, the importance of training was found in 96.40% of practitioners who considered it a factor in setting up home sedation. This result is consistent with our 77.38% of respondents who underlined the lack of technical expertise as a hindrance to home sedation implementation. The psychological and emotional load linked to managing an end of life at home is important. This situation is more important to family physicians as they follow their patients for many years. Yet they manage these situations most of the time alone and isolated. There is no exchange time with other professionals or debriefing time such as we have in institutions. That is why the questionnaire clearly states, in the section on ‘‘hindrances to home sedation’’ the item ‘‘inability to broach end of life’’. But in the study it was not a hindrance to home sedation for 85.21% of physicians.
7 Currently the family physician is presented as the ‘central axis’ in the health care system, often overwhelmed by responsibilities. Yet, in parallel to this, patients with terminal illness are almost exclusively cared for at the hospital; it is then difficult for a physician to reinvest himself in the care of a patient he has not followed. At this time, more and more end of life care is provided by home hospitalisation services who can guarantee a 24/7 availability for continuity of care. This results in doubling medical responsibility, on the one hand that of the physician, on the other that of the medical home hospitalisation team. These services provide support in coordination and clinical expertise, which allows the family physician to be less the center of care provision, yet stay informed and practice in less arduous conditions. The role of ‘orchestra conductor’ reflects a classical ‘family’ physician image but not the reality of medical practice functioning in France nowadays. In the course of managing an end of life patient, there is a succession of referring doctors one of whom is, at best, the family physician. But he has the monopoly of prescriptions, despite a frequent delegation of that function to the physician in charge of the home hospitalisation team. It is he who takes important decisions such as request for extra help, hospitalisation, etc. Given the current practice of general medicine, it is the physician’s best interest to stay in the center of end of life care, without being the ‘central axis’, based on existing local resources. In our study, 65.29% of doctors do effectively not see responsibility as a hindrance to sedation.
Coordination of team partners In Haute-Vienne, coordination of end of life care occurs between the teaching hospital and its two palliative care mobile teams, the treating physician, ancillary staff and usually a home hospitalisation service. In effect, the practice of sedation necessitates logistical and material means that are often difficult to obtain in cities (midazolam only available through a hospital pharmacy, continuous electronic injection equipment, regular visits through the day by care team members, etc.). Setting up a home hospitalisation enables us to provide equipment, medications and to coordinate the different people involved. Coordination is a function requiring particular competencies all the more so that end of life situations are often complex clinically, socially and ethically. This function is heavy and tends to be professionalized nationwide. We found that for 50.59% of physicians, the difficulty in coordination between different members is a hindrance to setting up home sedation. So, if the treating physician no longer wishes to be the ‘‘central axis’’ person, who is to assume the care coordination role? Taking care of a person at the end of life requires an ‘upstream’ organisation starting at the hospital. For the hospital team must no longer envision care as fighting an illness but see care in light of time and quality of remaining life. If return to home is not organised properly ahead of time, taking into account the various factors at play (medical ones, adapted environment, relatives capable of assuming the difficulties of home maintenance care), a patient has many chances of being rehospitalised in the short term. In case of difficulties, relatives taking care of the patient must know exactly whom to reach. It is essential that continuity of care be guaranteed to maintain end of life
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E. Jacques et al.
patients at home. Indeed, in city settings, the permanence of care has become insufficient, as physicians can no longer assume full night on-call. A relay has been taken the hospitals or other entities, which provide 24/7 access to continuous care. In the department of Haute-Vienne, this consists of the 911 line, of the telephone assistance linked to the two home hospitalisation teams and of the on-call physician for the Limoges teaching hospital. Coordination through 911 calls allows us to handle acute distress situations at home in the absence of coverage by the treating physician, especially at night. The 911 center is informed of the list of patients in home end of life situations for whom no hospitalisation or resuscitation needs to be provided, but for whom symptomatic or sedation treatment can be necessary. Such coordination already exists thru the mobile palliative care teams at the Limoges Hospital but, based on our experience, will need to be developed.
lag for taking care of them and prevent inappropriate rehospitalisations. Advance personalised prescriptions are considered an important help for sedation by family physicians (93.49%). They also give reassurance to patients, their relatives and the professionals intervening at home. Unluckily, advance prescriptions are not a well known or widespread practice in non hospital medicine. Through its expertise and in concert with the patient (if possible), the family, the treating physician, the home hospitalisation coordinating physician and nurses, the mobile palliative care team can enable the broadcasting of such prescriptions for home settings; it can also, as seen in the previous section, alert the 911 center of the palliative status of a patient. Thus all physicians intervening at home will have all the elements needed for optimal care in emergency situations.
The problem of emergency situations
Collegial procedure
Emergency situations in a home end of life setting are a source of anguish for the patient and relatives. Two situations give particularly rise to anxiety: night time with the difficulty of accessing medical advice and the agonal phase where symptoms appear unbearable to relatives [17]. It is not because clinical signs are not considered a vital emergency for caretakers that they do not generate feelings of insecurity for relatives. Situations encountered by professionals at home can be complex and hazy. It is possible that symptoms cannot be alleviated. It then raises the question of the physician’s ethical and legal responsibilities if a decision for sedation needs to be made without a collegial procedure, or a decision to transfer a patient to the hospital. In all cases, advance directives must be sought systematically for they are a precious decision making helper. In any circumstance, the physician must preserve the patient’s dignity and guarantee the quality of end of life [26], but the lack of medical information at home is often problematic and does not always allow the most pertinent decisions. A complete medical record, including information on the palliative situation and procedures to follow allows an easy answer to these questions: whom to call if needed, how to handle problems and hospitalisation. Hospitalisation at end of life is not necessarily a bad thing, but it implies important consequences: a risk of death during transfer, a frequently and sometimes long stay in emergency, a setting that is not well adapted to patients at end of life. It is preferable to give to the people involved, thru training and anticipation, the capacity to serenely handle difficult situations at home and use the hospital as a last resort.
It is recommanded by an expert group, validated by the French High Healthcare Authority and endorsed as well by the French Palliative Care Society (SFAP) [1,2]. It allows setting up a process of ethical and medical reflexion on sedation. It necessitates gathering several intervening professionals, both medical and non medical. This procedure can be difficult to set up at home. This recommendation is justified by the consciousness altering properties of the treatment. But, to be ethical, several actors must participate, which is a challenge at home: • organising a discussion time for the physician, the outside care providers and the members of the mobile team; • time allowance often difficult to find in loaded schedules.
Personalised advanced prescriptions Personalised advance prescriptions allow to anticipate various acute distress situations that can occur for the patient. This allows better reaction time by the nurse’s application of prescriptions prior to the physician’s arrival. Indeed, the terminal stage is often accompanied by acute episodes and the onset of uncomfortable symptoms. These complications are often predictable according to underlying pathology. It is then interesting to anticipate them via advance personalised prescriptions, to decrease the time
The study confirms that this difficulty is the most important hindrance to sedation implementation for 78.82% of physicians. Creating specific national billing codes, both medical and non medical, for the time spent could make private practice people more available. This is reflected in the comments of a physician who states that ‘‘End-of-life care is very time consuming. There is no specific billing code. How can we spend 1 or 2 hours with a patient for 33 euros?’’
Practical aspects of a home sedation Sedation is a treatment adapted for very specific indications, which are defined in guidelines for home [2]. It is not often used in that context, but has already been implemented by 54% of physicians, a majority of which are women practicing in a rural setting and in a home hospitalisation situation. Knowledge about this treatment is well spread, as 88% of family physicians knew its authorization by law and 78% knowing its principles. Indications found consisted mostly of refractory symptoms (80% of physicians having used it did so for that indication) and 56% used it for acute distress situations. These numbers are in concordance with our practice observations where acute vital distress situations are less frequent. The compounds used mostly for home sedation are benzodiazepines in 62.12% of cases, in particular midazolam (42.11%). This reflects knowledge of the formal expert consensus validated by the French High Healthcare Authority and scientific societies. The use of compounds other than midazolam can be explained by its limited access in
Please cite this article in press as: Jacques E, et al. Sedation at home for terminally ill patients. Médecine palliative — Soins de support — Accompagnement — Éthique (2014), http://dx.doi.org/10.1016/j.medpal.2013.09.002
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ambulatory medicine as confirmed by the comment of one physician: ‘‘the only problem is medication availability’’. When midazolam is not available, the use of other benzodiazepines (diazepam or clorazepate) is possible with the inconvenience of their more difficult handling especially in terms of duration of action and metabolite accumulation. In six answers we found the simultaneous use of Dolosal® , Largactil® and Phenergan® (‘DLP lytic cocktail’) which corresponds to older sedation formulas (Dolosal® was taken off the market in 2002). We must insist on the fact that neuroleptics are not adapted to these situations as they give a semblance of sedation. With these treatments, the patient seems quiet (sleepy, slow movements, stiff face, etc.) but in reality he remains conscious and, quite often, extremely anxious. This has been demonstrated long ago with EEG studies of patients taking neuroleptics and their stories told subsequently, especially with droperidol (Droleptan® ). [27,28]. We also noted the sole use of opioids in 20% of cases. Let us make note of the fact that morphine-like substances are antalgic molecules not sedating ones, though sedation may be observed, especially if overdosed. They can nonetheless be associated with midazolam in case of physical pain linked to the distress or to refractory symptoms. If benzodiazepines are inefficient, it is possible, after a mandatory anaesthesia consult, to use hypnotic molecules used in anaesthesia [2]. Furthermore, we noted that 31.5% of physicians wishing to initiate sedation think that it is disguised euthanasia, compared to 18% of those who have already done one. This difference may be the source of the reticence of physicians has in introducing such a treatment. These results sometimes evoke the wish to hasten death. Some comments by physicians point that way: ‘‘‘aggressive’ end of life care with the accord and wishes of families has always been done’’. Whatever the case, it has been proven that sedation does not shorten life, though that opinion is widespread in society and also among physicians [4,29]. Some factors thought to enable sedation set up by physicians stand slightly apart: training for 96.40%, advanced personalised prescriptions for 93.49% and the help of a mobile palliative care team for 88.27%. The three other factors are thought facilitating by more than half of the physicians. As far as implementing and managing a home sedation, 97.6% of practitioners feel capable of continuing an established sedation and of modifying it if needed. This confirms that this treatment can be developed by family physicians. That being the case, the initiation of a sedation seems more delicate, as 57.48% of physicians state they are able to do it alone whereas 96.4% prefer starting it with the assistance of the mobile palliative care team. This seems to indicate that initiating sedation scares physicians being alone, probably because of a lack of knowledge of the law, of the treatments and their indications (see information expectations in Table 4).
to physicians when taking care of a person at the end of life at home. Sedation is reserved for a few precise indications and in particular circumstances so that its home use is done safely and in a controlled way. Our study has shown that sedation has been done by 54% of responding physicians. They are most often women and family physicians practicing in a rural setting. Despite lack of prior experience, sedation has been considered by at least once by 74.69% of physicians. With these results, it is important to enable physicians to set this specific treatment up correctly in a reassuring reference frame and according to the recommendations of a formal expert consensus panel [1]. The ultimate goal of the study was to determine which levers can be used to help physicians implement a home sedation when needed. To this end, the determining elements are: training, advanced personalised prescriptions and the help of a mobile palliative care team. Only 35% of family physicians have had any palliative care training in their careers. To enable them to set up sedation, we evaluated their precise training needs and the steps for their implementation. Physicians ask for knowledge in the theoretical, practical and legal aspects of sedation. The favoured training format is an evening presentation, which allows easier availability and quick essential knowledge acquisition. We may consider distributing guideline sheets to physicians who wish for them. Technical information sheets may be systematically included in the medical record of home palliative care patients. Caring for an end of life person at home is often complex and is facilitated by the help of a home hospitalisation service. This entity, dedicated to non-hospital patients, makes hospital level care available to patients at home. Regarding compounds available for sedation, it allows access to midazolam and to the electronic equipment for continuous intravenous flow. On a human scale it allows multiple daily visits by the care team members; it allows care and monitoring, coordination between the different team members, an easier access to the mobile palliative care team and a 24/7-telephone availability. We think that we must evolve towards a more systematic implementation of the procedures required for sedation, as it allows a safer frame of work for the physician, the patient and their relatives. A regular update in therapeutics and pharmacology seems necessary as well. Such an evolution seems essential in the current societal context. If end of life at home is not handled better, especially by sedation for patients who need it, and for lack of wanting and knowing how to mobilise all modern medicine resources for a humanistic caring approach, the legislators may be more and more inclined, under various pressures, to decriminalise ‘medical help in dying’ that is assisted suicide even euthanasia [30].
Conclusion
Disclosure of interest
Though restricted to hospitals for a long time, sedation is for some years now, part of the range of therapies available
The authors declare that they have no conflicts of interest concerning this article.
Please cite this article in press as: Jacques E, et al. Sedation at home for terminally ill patients. Médecine palliative — Soins de support — Accompagnement — Éthique (2014), http://dx.doi.org/10.1016/j.medpal.2013.09.002
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Appendix A. Supplementary data The questionnaire used in this study is available online at http://dx.doi.org/10.1016/j.medpal.2013.09.002.
Appendix B. Supplementary data The French version of this article is available online at http://dx.doi.org/10.1016/j.medpal.2013.09.002.
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Please cite this article in press as: Jacques E, et al. Sedation at home for terminally ill patients. Médecine palliative — Soins de support — Accompagnement — Éthique (2014), http://dx.doi.org/10.1016/j.medpal.2013.09.002