Consultation with specialist palliative care services in palliative sedation: considerations of Dutch physicians

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1 Support Care Cancer (2014) 22: DOI /s ORIGINAL ARTICLE Consultation with specialist palliative care services in palliative sedation: considerations of Dutch physicians Ian Koper & Agnes van der Heide & Rien Janssens & Siebe Swart & Roberto Perez & Judith Rietjens Received: 22 April 2013 /Accepted: 27 August 2013 /Published online: 14 September 2013 # Springer-Verlag Berlin Heidelberg 2013 Abstract Purpose Palliative sedation is considered a normal medical practice by the Royal Dutch Medical Association. Therefore, consultation of an expert is not considered mandatory. The European Association of Palliative Care (EAPC) framework for palliative sedation, however, is more stringent: it considers the use of palliative sedation without consulting an expert as injudicious and insists on input from a multi-professional palliative care team. This study investigates the considerations of Dutch physicians concerning consultation about palliative sedation with specialist palliative care services. Methods Fifty-four physicians were interviewed on their most recent case of palliative sedation. Results Reasons to consult were a lack of expertise and the view that consultation was generally supportive. Reasons not to consult were sufficient expertise, the view that palliative I. Koper VU University, Amsterdam, The Netherlands A. van der Heide: S. Swart : J. Rietjens Department of Public Health, Erasmus MC, Rotterdam, The Netherlands R. Janssens Department of Medical Humanities, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands R. Perez Department of Anesthesiology, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands R. Perez Hospice Kuria, Amsterdam, The Netherlands I. Koper (*) Ierlandstraat LN, Haarlem, The Netherlands ikr300@gmail.com sedation is a normal medical procedure, time pressure, fear of disagreement with the service and regarding consultation as having little added value. Arguments in favour of mandatory consultation were that many physicians lack expertise and that palliative sedation is an exceptional intervention. Arguments against mandatory consultation were practical obstacles that may preclude fulfilling such an obligation (i.e. lack of time), palliative sedation being a standard medical procedure, corroding a physician's responsibility and deterring physicians from applying palliative sedation. Conclusion Consultation about palliative sedation with specialist palliative care services is regarded as supportive and helpful when physicians lack expertise. However, Dutch physicians have both practical and theoretical objections against mandatory consultation. Based on the findings in this study, there seems to be little support among Dutch physicians for the EAPC recommendations on obligatory consultation. Keywords Palliative sedation. Consultation. Specialist palliative care services. Qualitative Introduction Palliative sedation is a medical intervention at the end-of-life aiming at symptom control by deliberately lowering a patient's consciousness. The Royal Dutch Medical Association (RDMA) issued a guideline in which preconditions for the use of palliative sedation are described. The guideline states that palliative sedation may be used to offer relief from refractory pain and other distressing symptoms such as delirium, agitation or dyspnoea, without the intention to prolong or shorten life [1 4]. Its use should be limited to patients with a life expectation of 2 weeks or less. Sedation can be used continuously or intermittently; and rather than the degree of

2 226 Support Care Cancer (2014) 22: consciousness, the degree of symptom control needed should be used to determine the depth of the sedation [1]. Palliative sedation is used rather frequently and its prevalence is increasing. Reports on frequencies of the use of palliative sedation in different countries show percentages ranging from 4 to 36 % [2, 4 7]. This variation may well have been caused by differences in definitions applied to palliative sedation or by the difference in study population selection. In the Netherlands, the application of palliative sedation increased from 5.6 % of all deaths in 2001 and 8.2 % in 2005 [8] to 12.3 % in 2010 [9]. A comparable increase was found in other studies [6, 7]. Palliative sedation differs from euthanasia in that it is aimed at the reduction of conscious experience of symptoms, not at ending life. In fact, there are no indications that palliative sedation applied in accordance with guidelines would shorten life [2, 10, 11]. Unlike euthanasia, palliative sedation is considered a normal medical practice by the RDMA and therefore the association sees no need to insist that an expert physician be consulted at all times before deciding to resort to palliative sedation [1]. In cases where a practitioner has doubts regarding his expertise or experiences difficulties in the process, such as establishing the refractoriness of a symptom, the RDMA considers it standard professional practice to consult the appropriate expert in time [1]. More stringent than the RDMA, the European Association of Palliative Care (EAPC), who developed a framework for the composition of guidelines for palliative sedation, speaks of injudicious use of palliative sedation in situations in which before resorting to sedation, there is a failure to engage with clinicians who are experts in the relief of symptoms despite their availability [12]. Whenever possible, the decisionmaking process as well as the medical rationale for palliative sedation should be based on the input from a multi-professional palliative care team rather than from a single treating physician, the EAPC states. Furthermore, De Graeff and Dean in 2007, in their review of international literature, reported palliative sedation therapy to be an unusual and extraordinary intervention that requires both medical and communicative expertise and they consider consultation with palliative care experts advisable if not mandatory [13]. In 1998, the Dutch government launched a national palliative care program, which included, besides education and research in palliative care, the nationwide establishment of specialist palliative care services (Consultation Teams Palliative Care) organised by the Comprehensive Cancer Centre Netherlands. These consultation teams consist of experienced physicians and nurses who are trained in palliative care that can be consulted by all healthcare professionals by telephone [14]. If caregivers or families feel the need for consultation at the home of the patient, consultation teams are prepared to do home visits. In 2008, Rietjens and colleagues reported that of all Dutch physicians who practiced palliative sedation in 2005, on average 9 % consulted these specialist palliative care services [8]. This percentage was composed of 5 % for nursing home physicians, 2 % for clinical specialists and 20 % for general practitioners. In a more recent Dutch study on the practice of palliative sedation in two Dutch regions after the introduction of the RDMA guideline, Swart et al. reported that in 22 % of all cases of palliative sedation, the treating physician had consulted these specialist palliative care services [15]. However, the physicians' reasons whether or not to consult specialist palliative care services have never been studied. Therefore, the present study aims to identify, clarify and analyse these reasons. In a qualitative study, we investigated the Dutch physicians' attitudes and considerations regarding (mandatory) consultation of specialist palliative care services before resorting to palliative sedation. Methods Participants This study is part of the larger AMROSE project, aimed at studying the Dutch practice of palliative sedation after the launch of the national guideline on palliative sedation [16]. The focus of this project was on the practice of continuous sedation until death. In 2008, a structured questionnaire was sent to a random sample of 1,580 physicians. Of the 606 responding physicians, 370 reported on their most recent case of palliative sedation. Of these 370 physicians, 51 declared their willingness to participate in a subsequent qualitative semi-structured interview, and all of them were interviewed. The pilot interviews with one physician from each setting were added, resulting in a total of 54 interviews. Information on characteristics such as the physician's age, sex, medical speciality and working experience was acquired from the original questionnaire (Table 1). The interviews were conducted between October 2008 and April 2009 and lasted between 30 and 65 min. The participants gave consent for audio taping and the recordings were transcribed verbatim. We removed names and privacy-related information. To ensure consistency among the interviewers, a semi-structured interview with fixed prompts was used. The team of interviewers consisted of six professionals: two health scientists, two physicians, a psychologist and a physiotherapist. The interviews occurred at the workplace of each respective participant. All interviewers received a one-day training session on interview techniques and monthly meetings were organised to discuss findings and interim analyses. During one of these meetings, the interviewers concurred that all relevant perspectives had been caught. Further purposive sampling was therefore deemed unnecessary. The interview addressed the physician's most recent case of continuous sedation until death as well as experiences and attitudes regarding the practice of palliative sedation in general. The full

3 Support Care Cancer (2014) 22: Table 1 Characteristics of interviewed physicians Practice location; no. of physicians (%) Characteristic General practice Nursing homes Hospital n =23 n =23 n =8 Age, year <40 1 (4) 3 (13) 2 (25) (39) 7(30) 4(50) (48) 11 (48) 2 (25) >60 2 (9) 2 (9) 0 Sex Male 13 (57) 6 (26) 5 (63) Female 10 (44) 17 (74) 3 (38) Working in current specialty, year (9) 8 (35) 2 (25) (39) 7(30) 4(50) (31) 8(35) 2(25) (22) 0 0 Working in hospice or palliative care unit 2 (9) 10 (44) 4 (50) Palliative care consultant 3 (14) 4 (17) 3 (38) interview scheme can be found elsewhere [17]. Questions that related to consultation and expertise in palliative sedation are listed in Box 1. Box 1 Interview questions related to consultation and expertise 1. Did you consult a palliative care team in your most recent case of palliative sedation? 2. Do you think, in general, that consultation of a palliative care team should be an obligation before continuous sedation until death can be used? Why (not)? 3. To what extent do you regard yourself expert enough to use continuous sedation until death? Analysis The analysis of the interviews was performed using the constant comparative method [18]. The data were broken down into discrete units that were coded and categorised into themes by IK and JR independently. The themes underwent content and definition changes as units of data were compared, added or removed, and relations between themes became apparent. Eventually, IK and JR compared themes and organised these in a coding tree, which was discussed several times with the rest of the authors, who have multi-professional backgrounds and who had also read large parts of the raw material. The final coding tree, containing all relevant themes, was used by IK to code all interviews. All the codes were checked and supplemented if necessary by JR. Differences were discussed but were minimal, so consensus was easily reached. The final results were agreed upon by all authors. Quotes illustrating the considerations of physicians were selected by IK and JR. Results Thirty-six out of fifty-four physicians reported not to have consulted specialist palliative care services in their most recent case of palliative sedation, while ten physicians did. Eight physicians did not provide information on consultation in their most recent case of palliative sedation as is shown in Table 2. They did, however, discuss in general the issues of consultation and of palliative expertise. Considerations on consultation Most physicians mentioned several arguments for and against (mandatory) consultation. Reasons to consult Insufficient expertise was often mentioned as a reason to consult. According to physicians, expertise in palliative sedation could concern both the decision-making (such as the indication, the assessment of the refractoriness of symptoms and ruling out potential treatment alternatives) and the performance of the medical procedure (such as establishing the dosage of sedatives and whether they should be administered continuously or recurrently) (Box 2, quotes 1 and 2). Another

4 228 Support Care Cancer (2014) 22: Table 2 Consultation with specialist palliative care services by physicians in their most recent case of PS by setting Setting where the respondent was working; no. (%) Consultation General practice Nursing home Hospital Total n =23 (43) n =23 (43) n =8 (14) n =54 No consultation with a specialist palliative care services 12 (52) 18 (78) 6 (75) 36 (67) Consultation with a specialist palliative care services 9 (39) 1 (4) 0 10 (18) Unknown 2 (9) 4 (18) 2 (25) 8 (15) reason for consultation was that it could provide general support or serve as an eye-opener (Box 2, quote 3). Box 2 Arguments in favour of consultation Lack of expertise Quote 1: I do consider myself competent in the evaluation, but I am less expert in the exact administration and the protocols involved because those change occasionally and I just don't do this often enough. So for that I ask the expertise of the TT-team.* General practitioner A018 Quote 2: That palliative sedation part I can handle. For me it is more about the phase before that, is this symptom really refractory or not sometimes I consult the team on this matter. General practitioner R96 Supportive Quote 3: Consultation of a physician with knowledge in palliative care sometimes gives an eye opening effect, things you didn't see or hear that way. [ ] I think it can be supportive. It is a tough decision you're making. General practitioner A118 *A TT-team is a home healthcare team specialised in palliative care. Reasons not to consult A key argument for considering consultation in the case of palliative sedation to be unnecessary was that several respondents considered themselves to have sufficient expertise (Box 3, quote 1). Various sources for expertise were mentioned. Firstly, they referred to education in palliative sedation and palliative care including both standard palliative care education (e.g. in the curriculum of nursing home physicians) and extra-curricular training. Additionally, previous experience with palliative sedation and palliative care of terminal patients in general was mentioned as a source of expertise as well. Physicians also referred to their knowledge of palliative sedation guidelines, protocols and professional literature when describing the sources of their expertise. Finally, some respondents referred to the expertise of nearby colleagues or the medical team they were working in. Box 3 Arguments against consultation Sufficient expertise Quote 1: My expertise is quite in order. I really think so. I'm in a Palliative Care Consultation Team myself, I have experience with it, I received palliative care education, we organised our unit very well, a team of nurses, a protocol, yes it's perfect. Clinical specialist A602 Palliative sedation is normal medical practice Quote 2: If you use it as a treatment for refractory symptoms, with limited life expectancy, then I think I see no reason for review. Nursing home physician A377 Quote 3: No it is not that hard. Midazolam, not Morphine, that makes it a lot easier, less side effects. So yes, giving sleeping medication is not so hard, so I don't understand what the problem could be. Q: Inexperience for instance..? A: Why? It is an infusion it is installed and the pump is running so I don't see what the problem might be. General practitioner A165 Alackoftime Quote 4: There are certainly situations where you simply have to act immediately in a difficult situation. Q: And you don't have time [to consult] A: Where you don't have time en where it would be very bad medical practice if you don't act, but instead waste time by approaching a team. Clinical specialist R545 Fear of disagreement Quote 5: The difficult part is of course, when you discuss it with the family and you start making the necessary preparations, you still need approval from that team. That is the dilemma. It would be bothersome if they say: well, we don't agree with this. General practitioner A304 Little added value Quote 6: As a GP, I know my patient, I have bonded with my patient, I know how he reacts, what he wants. A palliative team does not know this patient, they'll come up with general guidelines and recommendations and those do not work for everyone. General practitioner R218 Another argument for not consulting mentioned by respondents was that they considered palliative sedation to be normal medical practice (Box 3, quotes 2 and 3). Several lines of reasoning were described to support this thought. Firstly, some respondents stressed that palliative sedation unlike euthanasia does not shorten life. Secondly, physicians described situations where the indication to use palliative sedation was very clear, or considered the technical procedure to be rather straightforward. Finally, physicians referred to other more difficult decisions that do not require consultation either. Some physicians also mentioned that consultation in the context of palliative sedation is practically very difficult. They argued that when a patient needs sudden sedation, immediate action needs to be undertaken. Then waiting for the advice of specialist palliative care services is not in the best interest of

5 Support Care Cancer (2014) 22: the patient (Box 3, quote 4). Finally, some respondents mentioned that they did not consult with specialist palliative care services because they fear that the team will disagree with their decision (Box 3, quote 5) or because they feel that it adds little value in case the consultant does not know the patient or the physician well enough to judge the situation sufficiently (Box 3, quote 6). Considerations regarding the mandatory aspect of consultation Argument in favour of mandatory consultation Physicians considered a lack of expertise a reason to make consultation mandatory before resorting to palliative sedation. They acknowledged that alternative treatment options might be overlooked in the decision-making process (Box 4, quote 1). Another reason mentioned to obligate consultation is the exceptional nature of the practice (Box 4, quote 2). One physician argued that obligating consultation provides an opportunity to improve the practice of palliative sedation as it may highlight practical difficulties. Box 4 Arguments in favour of mandatory consultation Lack of expertise Quote 1: Yes I don't think it is wrong to obligate consultation. I mean, it is different to use Midazolam in a dying phase, this is something else. When you really establish a refractory symptom, you should check whether you whether all options have been considered or if others might have some ideas. Your knowledge could be limited. Nursing home physician A367 Exceptional situation Quote 2: I think it is something is it refractory just to exchange ideas with someone, that is so incredibly important in this stage, I would never skip this. And I can't imagine someone else would. So, yes actually I do think [it should be mandatory]. If I would request [palliative sedation] later in life, I would appreciate it if my practitioner consults a colleague. Yes. General practitioner R90 Arguments against mandatory consultation Several physicians reported mandatory consultation as being practically unfeasible. In some situations, they argued, mandatory consultation may lead to unacceptable medical practice because patients may be suffering unnecessarily while waiting for consultation. Physicians also questioned the legal status of the advice, if consultation would become mandatory (Box 5, quotes 1 and 2). Box 5 Arguments against mandatory consultation Practical problems Quote 1: These are often decisions made outside of office hours, and may occur suddenly. Especially in our profession a serious dyspnoea may arise in several minutes, if you still need to get going with an obligatory consultation team, you are severely failing your patient Clinical specialist R566 Quote 2: If you obligate something, it should have consequences in my opinion. [ ] I don't know the legal implications. What if they give the advice not to apply palliative sedation, what if I ignore the advice? General practitioner R193 Palliative sedation is normal medical procedure Quote 3: I think this palliative sedation is not meant to replace euthanasia. And by making [consultation] mandatory, it appears to go in that direction. Because then you will emphasize that it is an alternative for euthanasia, but it is not. Nursing home physician R257 At odds with professional responsibilities Quote4:Weneedtobecareful we live in a society where everyone says: I have this form and we have a consultation team, now all is going to be alright. You see this at the oncology unit very clearly, oncology teams: if there is a team, good health care is guaranteed. In reality it doesn't work that way, is my experience. The danger of a Palliative Care Consultation Team is of course telling a patient: Well the team is on its way, good luck and take care. Clinical specialist R566 Quote 5: I think we need to leave certain things to the physician and the patient or his representative. Especially if preceded by a process of negotiating, evaluating and adjusting the policy, yes we shouldn't interfere too much with that. Nursing home physician A420 Deterrent Quote 6: Here we quite often add some Midazolam [to the other medication] when a demented and restless patient is dying. Is that palliative sedation, should that be reviewed? I would feel deterred to do this again. Nursing home physician R266 A second argument against mandatory consultation was that physicians perceived palliative sedation as normal medical practice. They claimed that obligating consultation would change the legal and moral status of palliative sedation. In their views then, palliative sedation might incorrectly be seen as an alternative to euthanasia (Box 5, quote 3). Thirdly, mandatory consultation was mentioned to be at odds with a physician's professional responsibility. Individual physicians should have sufficient expertise themselves and consult when they have doubts which are common in any other medical practice (Box 5, quotes 4 and 5). Finally, some respondents mentioned that obligating consultation may deter physicians from practicing palliative sedation because of the administrative red tape or the inspection afterwards, which may not be in the patient's best interest (Box 5, quote 6). Other arguments concerning mandatory consultation Some physicians expressed that although consultation should not be obligatory, the possibility to consult with specialist palliative care services should be facilitated. They say the threshold for using the consultation service should be kept as low as possible. Other physicians thought that consultation should be mandatory in certain situations, e.g. for physicians who have little or no experience, or who do not work in a team.

6 230 Support Care Cancer (2014) 22: Discussion Despite the wide availability of palliative consultation teams in the Netherlands, studies of Rietjens et al. in 2009 and Swart et al. in 2012 investigating the practice of palliative sedation in the Netherlands reported consultation averages of 9 and 22 % of all cases, respectively [8, 16]. These numbers may seem quite low considering the strict attitude of the EAPC, which associates a failure to consult clinicians who are experts in the relief of symptoms with injudicious use of palliative sedation. Most physicians mentioned both arguments for and against consultation and its theoretical obligation. The views on consultation and whether or not it should be mandatory for physicians working as palliative care consultants or physicians working in a palliative care setting were just as varied as the views of physicians who were not. A key reason not to consult with specialist palliative care services prior to the use of sedationinourstudywasthatseveral physicians considered themselves to have sufficient expertise, and consultation hence would add little value. Interestingly, besides referring to their own expertise, several nursing home physicians and clinical specialists referred to the expertise of their team, potentially explaining the higher numbers of consultation among GPs [19, 20]. Furthermore, several physicians indicated that they did not consult with specialist palliative care services because the medical situation of the patient necessitated acute action. In the light of this, the suggestion made by the EAPC to address the option of palliative sedation early in the disease trajectory merits attention. Another reason why physicians did not consult specialist palliative care services was that they considered palliative sedation to be part of the normal medical practice, either referring to the fact that it does not shorten life (contrary to euthanasia) or to the fact that is not a difficult practice. This first notion is in line with the notion of the RDMA guideline, which also stresses that palliative sedation is a normal medical practice if it is used according to the criteria in the guideline [21]. The second notion is not, since the RDMA guideline acknowledges that palliative sedation is a complicated procedure that necessitates careful attention and expertise. Finally, a few physicians mentioned that they did not consult because they were worried that the specialist palliative care services would provide advice that would conflict with their own course of action, e.g. in a situation where they had already discussed with the family that sedation would be used. De Graeff et al. reported in 2008 that in 41 % of the telephone consultations on palliative sedation, a negative advice had been given by the palliative consultation team [22]. These negative advices predominantly concerned situations in which the team thought that other treatment options were overlooked, as well situations in which the patient had a life expectancy of more than 2 weeks. These figures show the need of timely involvement of the specialist palliative care services when there are doubts about the use of sedation. The present study also provides insight in the reasons favouring consultation of a palliative care team. The lack of expertise was an important reason to consult a palliative consultation team, but is not the only reason. Some physicians find it complicatedtodecideonusingpalliativesedationandturntoa palliative consultation team for general or emotional support. Albeit from a different perspective, this is in line with a study by Kuin et al. in 2004 who showed that requesting caregivers were coached on how to deal with patient-related problems, as well as problems they themselves experienced [23]. Consultants should therefore be aware that some physicians seek emotional or general support rather than specific advice. Although in our study there seems to be support for lowthreshold facultative consultation, there does not seem to be much support to obligate physicians to consult specialist palliative care services prior to the use of palliative sedation in the Netherlands. Objections against mandatory consultation which included practical problems, such as a lack of time and the inhibitory effect of obligation on using sedation, and theoretical problems, such as the argument that obligating consultation, would suggest that palliative sedation is not a normal medical practice with the argument that this would collide with the professional responsibility of physicians. The predominant negative attitude of the physicians in this study towards mandatory consultation of a palliative consultation team is in line with the Dutch guideline but conflicts with the advice of the EAPC in their framework for guidelines on palliative sedation. It is obvious that expertise is still a key issue in the argumentation concerning consultation in palliative sedation. While Shipman et al. in 2002 found that consultation with specialist palliative care services helped general practitioners develop expertise in palliative care [24], there are more ways to support the development of physicians' expertise than just consultation, such as education, guidelines and protocols [25, 26]. Strengths and limitations A strong aspect of the study lies in its qualitative nature, as it allowed for an in-depth analysis of the considerations of physicians concerning mandatory consultation. Interviewing physicians from different settings revealed a rich variety of argumentations in favour of and against consultation before resorting to palliative sedation. The respondents' most recent case was used as a starting point for the discussion about the practice of sedation, while subsequently, more general questions were asked including the respondents' perspectives regarding consultation. Therefore, we were not able to relate physicians' considerations regarding consultation to specific case characteristics. Further, even though physicians were randomly selected for the original questionnaire study, the

7 Support Care Cancer (2014) 22: physicians who were interviewed for this study volunteered to participate. It is possible that only physicians with a special interest in palliative care or palliative sedation volunteered, which could entail selection bias. Lastly, the extent to which the views of the Dutch physicians are generalizable to other countries is unclear. Conclusions This study provides insight in the reasons whether or not to consult a palliative consultation team prior to the use of palliative sedation. Physicians mentioned expertise as an important issue in this matter and reported a lack of expertise as an important reason to consult the specialist palliative care service, as well as consultation being generally supportive. Reasons not to consult include practical problems, such as time, and the fact that several physicians considered palliative sedation to be part of the normal medical practice. Although there was support for low-threshold facultative consultation, Dutch physicians have both practical and theoretical objections against mandatory consultation. Therefore, based on the findings in this study, there seems to be little support among Dutch physicians for the EAPC recommendations on obligatory consultation. Acknowledgments This study was funded by the Netherlands Organisation for Health Research and Development (ZonMw), the Sint Laurens Fonds Rotterdam and Stichting Palliatieve Zorg Dirksland-Calando. The funding sources were not involved in the conduct of the study or the development of the article. The authors thank Anneke Tooten, Tijn Brinkkemper and Gwendolyn Zelvelder for interviewing the respondents. Conflict of interest Roberto Perez has received grant funding from Hospice Kuria. Siebe Swart, Agnes van der Heide, Judith Rietjens, Rien Janssens en Ian Koper have no competing interests. References 1. RDMA, Guideline for palliative sedation Utrecht, the Netherlands. Available via knmgpublicaties/knmg publicatie/guideline-for-palliative-sedation htm. Accessed 3 March Sykes N, Thorns A (2003) The use of opioids and sedatives at the end of life. Lancet Oncol 4: Moyana J, Zambrano S, Ceballos C (2008) Palliative sedation in Latin America: survey on practices and attitudes. Support Care Cancer 16: Fainsinger RL, Waller A, Bercovici M et al (2000) A multicentre international study of sedation for uncontrolled symptoms in terminally ill patients. Palliat Med 14: Rietjens JA, van der Heide A, Vrakking AM (2004) Physician report of terminal sedation without hydration or nutrition for patients nearing death in the Netherlands. Ann Intern Med 141: Seale C (2009) End-of-life decisions in the UK involving medical practitioners. Palliat Med 23: Chambaere K, Bilsen J, Cohen J et al (2010) Continuous deep sedation until death in Belgium: a nationwide survey. Arch Intern Med 170(5): Rietjens JA, van Delden J, Onwuteaka-Philipsen B et al (2008) Continuous deep sedation for patients nearing death in the Netherlands: descriptive study. BMJ 336: Onwuteaka-Philipsen BD, Brinkman-Stoppelenburg A, Penning C (2012) Trends in end-of-life practices before and after the enactment of the euthanasia law in the Netherlands from 1990 to 2010: a repeated cross-sectional survey. Lancet 380: Verkerk M, van Wijlick E, Legemaate J, de Graeff A (2007) A national guideline for palliative sedation in the Netherlands. J Pain Symptom Management 34(6): Maltoni M, Pittureti C, Scarpi E et al (2009) Palliative sedation therapy does not hasten death: results for a prospective multicentre study. Ann Oncol 20: Cherny N, Radbruch L (2009) Board of the EAPC. EAPC recommended framework for the use of sedation in palliative care. Palliat Med 23: De Graeff A, Dean M (2007) Palliative sedation therapy in the last weeks: a literature review and recommendations for standards. Palliat Med 10(1): Comprehensive Cancer Centre Netherlands. Consultation palliative care. Available via Accessed 8 May Swart SJ, Van der Heide A, Brinkkemper T et al (2012) Continuous palliative sedation until death: practice after the introduction of the Dutch national guideline. BMJ Support Palliative Care 2: Swart SJ, Brinkkemper T, Rietjens JAC et al (2010) Physicians' and nurses' experiences with continuous palliative sedation in the Netherlands. Arch Int Med 170(14): Swart SJ, van der Heide A, van Zuylen L et al (2012) Considerations of physicians about the depth of palliative sedation at the end of life. CMAJ 184(7): Boeije H (2002) A purposeful approach to the constant comparative method in the analysis of qualitative interviews. Quality & Quantity 36: van Heest FB, Finlay IG, Kramer JJE, Otter R, Meyboom-de JB (2009) Telephone consultations on palliative sedation therapy and euthanasia in general practice in The Netherlands in 2003: a report from inside. Family Practice 26(6): Teunissen SCCM, Verhagen EH, Brink M et al (2007) Telephone consultation in palliative care for cancer patients: 5 years of experience in The Netherlands. Support Care Cancer 15: Janssens R, van Delden JJM, Widdershoven GAM (2012) Palliative sedation: not just medical practice. Ethical reflections on the Royal Dutch Medical Association's guideline on palliative sedation J Med Ethics 38(11): de Graeff A, Jobse AP, Verhagen EH, Moonen AAJ (2008) De rol van consultatie bij palliatieve sedatie in de regio Midden-Nederland. Ned Tijdschr Geneeskd 152: Kuin A, Courtens AM, Deliens L et al (2004) Palliative care consultation in The Netherlands: a nationwide evaluation study. J Pain Symptom Management 27(1): Shipman C, Addington-Hall J, Barclay S et al (2002) How and why do GPs use specialist palliative care services? Palliat Med 16: Hasselaar JG, Reuzel RP, Verhagen SC et al (2007) Improving prescription in palliative sedation: compliance with Dutch guidelines. Arch Intern Med 167: Lo B, Rubenfeld G (2005) Palliative sedation in dying patients we turn to it when everything else hasn tworked. JAMA 294(14):