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End of life
Does legal physician-assisted dying impede development of palliative care? The Belgian and Benelux experience Kenneth Chambaere, Jan L Bernheim End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium Correspondence to Dr Kenneth Chambaere, Endof-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Laarbeeklaan 103, Brussels B-1090, Belgium; [email protected] Received 27 February 2014 Revised 13 November 2014 Accepted 15 January 2015 Published Online First 3 February 2015
ABSTRACT Background In 2002, physician-assisted dying was legally regulated in the Netherlands and Belgium, followed in 2009 by Luxembourg. An internationally frequently expressed concern is that such legislation could stunt the development of palliative care (PC) and erode its culture. To study this, we describe changes in PC development 2005–2012 in the permissive Benelux countries and compare them with non-permissive countries. Methods Focusing on the seven European countries with the highest development of PC, which include the three euthanasia-permissive and four non-permissive countries, we compared the structural service indicators for 2005 and 2012 from successive editions of the European Atlas of Palliative Care. As an indicator for output delivery of services to patients, we collected the amounts of governmental funding of PC 2002–2011 in Belgium, the only country where we could find these data. Results The rate of increase in the number of structural PC provisions among the compared countries was the highest in the Netherlands and Luxembourg, while Belgium stayed on a par with the UK, the benchmark country. Belgian government expenditure for PC doubled between 2002 and 2011. Basic PC expanded much more than endowment-restricted specialised PC. Conclusions The hypothesis that legal regulation of physician-assisted dying slows development of PC is not supported by the Benelux experience. On the contrary, regulation appears to have promoted the expansion of PC. Continued monitoring of both permissive and nonpermissive countries, preferably also including indicators of quantity and quality of delivered care, is needed to evaluate longer-term effects.
INTRODUCTION
▸ http://dx.doi.org/10.1136/ medethics-2014-102655
To cite: Chambaere K, Bernheim JL. J Med Ethics 2015;41:657–660.
Legal regulation of physician-assisted dying (PAD) —euthanasia and physician-assisted suicide—is hotly debated worldwide. One pragmatic concern is that allowing PAD will stunt the development of palliative care (PC) culture, resources and provision.1–4 Some patients eligible for PC might forgo PC or choose early assisted dying, lowering the demand for PC. More importantly, if PAD is available as a ‘quick fix’, policymakers might be tempted to reduce supply by saving on scarce resources for PC. Thus, the culture of competent and compassionate care for the terminally ill might be set back. This concern was not substantiated in a report of the European Association for Palliative Care (EAPC) to the UK Commission on Assisted Dying and an international comparative analysis
paper, both on the basis of survey data collected in 2005 by the EAPC Task Force on the Development of Palliative Care.5 6 However, these two studies on the state of development of PC left open the question whether the rate of PC development was affected by PAD legislation. We here describe changes in PC development in the permissive Benelux countries compared with non-permissive countries.
METHOD We use data from the two editions, 20077 and 2013,8 of the EAPC Atlas of Palliative Care in Europe. EAPC twice systematically surveyed national PC organisations and key experts in each country to tally per capita structural PC resources (home care teams, hospital PC units and palliative support teams, hospices and PC beds). The survey methods are detailed in the atlases.7 8 Other sources of indicators of nations’ PC development are more rudimentary and do not provide specific comparable diachronic data.9–13 Next to the Benelux countries, we show data for Iceland, the UK, Sweden and Ireland, the countries that in both EAPC Atlas editions together with the Benelux constitute the top seven nations in per capita number of structural resources for PC.7 8 We also present Belgian government expenditure for PC from 2002 until 2011. Similar data for other countries could not be retrieved.
RESULTS Structural PC resources 2005–2012 in the top seven Western European countries Countries are listed according to rank in structural PC services per million inhabitants in 2005 (table 1). Belgium remained stable at 18.08 services per million. The indicator in the UK slightly rose by 0.70 to 15.43 per million inhabitants. Large increases were seen in Sweden (from 5.03 to 16.64), Ireland (from 10.93 to 18.12), Luxembourg (from 8.78 to 19.11) and the Netherlands (from 8.45 to 15.32). Luxembourg and the Netherlands are the only countries with an increase in PC beds—respectively 47.40 and 17.28 per million; the other countries saw a decrease ranging from 0.77 per million in Belgium to 12.63 in Sweden.
Government expenditure for PC 2002–2011 in Belgium Between 2002, when euthanasia was legally regulated, and 2011, the government expenditure for PC in Belgium went from 89.77 to 186.98 million euros, an increase of 108% (about 12% annually,
Chambaere K, Bernheim JL. J Med Ethics 2015;41:657–660. doi:10.1136/medethics-2014-102116
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55 (3.29) −29 (−1.86) The Netherlands 138 (8.45)
256 (15.32) +118 (+6.87)
54 (3.31)
157 (9.39)
+103 (+6.08)
0 (0)
44 (2.63)
+44 (+2.63)
0 (0)
0 (0)
0 (0)
84 (5.15)
716 (43.87) 1022 (61.15) +306 (+17.28)
34 (64.96) +1 (+1.91) 1 (1.91) 0 (0) +2 (+3.82) 2 (3.82) 0 (−0.57) 0 (0) 2 (3.82) 2 (4.39) +3 (+5.16) 5 (9.55) 2 (4.39) +6 (+10.33) 4 (8.78) Luxembourg
10 (19.11)
44 (10.93) Ireland
whereas total healthcare expenditure increased by only 2.34% annually between 2003 and 2010) (table 2). Expenditure for PC at home and in home-replacement settings more than tripled, and spending in hospitals increased by 34%. Seventy per cent of the total increase in PC expenditure was for home care, home palliative nursing accounting for 52.4% (not in table).
DISCUSSION Summary of main results
Data are number of structural resources (services per million inhabitants). Data for 20057: except Belgium (data in European Association for Palliative Care Atlas applied to only one region).14 Data for 2012.8 PC beds not included in ‘all resources’ figures. *Mixed (hospital and home care) teams resource not surveyed in 2005. PCU, palliative care unit; PST, palliative support team.
+9 (−2.44)
+26 (+47.40)
156 (34.06)
105 (11.61) 158 (16.64) Sweden
83 (18.12)
+39 (+7.19)
30 (7.45)
39 (8.52)
+9 (+1.07)
14 (3.48)
35 (7.64)
+21 (+4.17)
0 (0)
0 (0)
0 (0)
+9 (+1.97) 9 (1.97) 0 (0)
8 (17.56)
−90 (−12.63) 510 (53.71)
147 (36.50)
−24 (−2.84) 3180 (53.10) 3156 (50.26)
+6 (+0.61)
+31 (+0.37)
11 (1.16) 5 (0.55) +26 (+2.74)
104 (1.66) +104 (+1.66) 158 (2.64) 189 (3.01)
26 (2.74) 0 (0) 94 (9.90)
+44 (+4.37)
337 (5.37)
−23 (−2.69)
50 (5.53)
−29 (−0.75) 356 (5.94) 339 (5.40)
27 (2.84) 50 (5.53)
368 (6.14) 882 (14.73) 969 (15.43) The UK
+53 (+5.03)
3 (9.14) 3 (10.17)
160 (15.32) 165 (15.30) +7 (+0.08)
+1 (+0.98) 7 (21.32) 6 (20.34)
188 (18.00) 195 (18.08) Belgium
Iceland
−19 (−0.58) 0 (0)
0 (0)
0 (0) 0 (0)
0 (−0.08) 0 (0)
+1 (+2.01) 4 (12.18)
28 (2.60)
3 (10.17)
28 (2.68)
0 (−1.03)
+5 (−0.02)
2005* 2012 Δ 2012 2005
Home care teams
Δ 2012 2005
Hospital (PCU/PST)
Δ 2012 2005
All resources
+87 (+0.70)
0 (0)
658
600 (66.34)
0 (−5.85)
+4 (−0.77)
17 (51.78) 17 (57.64)
375 (35.90) 2 (0.19) 0 (0)
0 (0)
+2 (+0.19)
0 (0) 0 (0)
Δ 2012 2005
PC hospices
Table 1
Structural resources for palliative care (PC) 2005–2012 in seven Western European countries
Mixed teams
Δ
0 (0)
2005
PC beds
2012
Δ
379 (35.13)
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Luxembourg and the Netherlands made large strides in increasing their PC resources between 2005 and 2012 and moved closer to the level of the top four of European countries, which includes Belgium. Belgium, like Iceland and the UK, has remained roughly at the same level but with 18.08 services per million inhabitants still ranks among the best European countries. The overall Belgian PC expenditure doubled (with palliative home care by far accounting for the largest increase) and grew at several times the rate of overall healthcare.
Explanation of the findings In the Netherlands and Luxembourg, with large increases in total PC services, and the only ones increasing per capita numbers of PC beds, there is no indication that PC was impeded. Luxembourg has notably doubled its services: as in Belgium in 2002,14 15 the Luxembourg 2009 law de-penalising PAD was accompanied by a twin law declaring PC a basic patient right, mandating and funding universal access to PC and fixing the number of institutional and home care PC services.16 In Belgium, the determination of number of services by law explains the paucity of new structural initiatives since 2005. Room for growth was in the output delivery of PC services, as approximated by expenditure. The other two of the top three nations in 2005, Iceland and the UK, likewise saw only a modest increase in number of structural resources, in stark contrast to the steep rise in the countries ranked just below. In any case, that Belgian PC appears on a par with the UK, the cradle of PC, with the longest tradition of advocacy and provision, is an indication of its advanced development. For Belgium, we see that the stability of the number of structural resources obscures real growth of existing PC services’ output: the annual rise of 12% in government expenditure far exceeds the 2.34% growth of overall healthcare expenditure. The growth of PC results from legislative measures granting eligible patients ‘palliative status’, with a lump sum, benefits and reimbursement for PC.14 15 PC at home, the setting responsible for 70% of the total increase in PC expenditure, is almost fully reimbursed in Belgium on the condition that the caregiver is recognised as trained in (basic) PC. Consequently, a large and increasing number of general practitioners and nurses are trained in PC in line with explicit policy to privilege the firstline daily care for patients and make it demand driven.14 15 Consequently, the penetrance of PC is high in Belgium: in 2007, 41% of all non-sudden death cases benefited from professional multidisciplinary PC, and this rose to 47% in 2010.17 18 However, two considerations mitigate the spectacular expansion of PC as inferred from increased spending on home care. First, some nursing care that before the PC law was provided by conventional home care (eg, for advanced neurological conditions) became funded by PC. Second, the only modest increase in the funding of specialised PC teams is a concern, particularly in light of the increasing frequency of work-intensive euthanasia requests, which very often befall PC specialists.19 20 The principal PC organisation observes that in the face of increasing Chambaere K, Bernheim JL. J Med Ethics 2015;41:657–660. doi:10.1136/medethics-2014-102116
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Chambaere K, Bernheim JL. J Med Ethics 2015;41:657–660. doi:10.1136/medethics-2014-102116
Table 2
Government expenditure on palliative care (PC) 2002–2011 in Belgium (in million euros) Year
Increase 2002–2011
Setting
2002
2003
2004
2005
2006
2007
2008
2009
2010
2011
Absolute
Relative (%)
Proportion (%)
Annual (%)
PC at home multidisciplinary PC teams (specialised) GP visits/nursing/physiotherapy (basic) palliative status and benefits* PC in hospitals† (specialised) PC in home replacement settings‡ (basic) PC partnerships§ Total PC expenditure (all settings) Total healthcare expenditure % of total healthcare expenditure for PC
32.7 7.14 18.3 7.25 49.5 5.62 2.02 89.8
44.0 7.98 28.6 7.46 50.0 6.46 2.02 102.5 28827.15 0.36%
53.7 8.04 37.5 8.22 50.9 6.80 2.01 113.4 30227.62 0.38%
58.6 8.28 42.1 8.19 50.8 7.15 2.00 118.5 30606.00 0.39%
63.4 8.17 47.0 8.27 51.7 7.49 2.02 124.6 29826.05 0.42%
73.6 9.66 55.3 8.68 55.3 7.83 2.03 138.8 30946.35 0.45%
82.6 9.49 63.4 9.73 60.6 10.4 2.06 155.6 31780.10 0.49%
91.6 9.33 71.4 10.8 65.8 12.9 2.09 172.3 33348.34 0.52%
97.1 9.40 76.7 11.1 65.6 15.4 2.04 180.2 33549.37 0.54%
100.6 9.94 79.6 11.0 66.5 17.9 2.03 187.0
67.9 2.8 61.3 3.8 17.0 12.3 0.01 97.2 4722.22
208 39 335 52 34 219 1 108 16.38
70 3 63 4 18 13 0
23 4 37 6 4 24 0 12 2.34
Data are inflation adjusted, using the World Economic Outlook (WEO) EconStats rates, IMF: http://www.econstats.com/weo/V016.htm (last accessed 1 October 2013). Source data: Data 2002–2007: Federal Evaluation Cell on Palliative Care. (Evaluation Report Palliative Care 2008) (in Dutch). Brussels: Federal Government Department Public Health, Food Safety and Environment, DG Organisation Health Care Services, Cell Chronic, Elderly and Palliative Care, 2008. Available at: http://www.health.belgium.be/internet2Prd/groups/public/@public/@dg1/@acutecare/documents/ie2divers/15720532.pdf (last accessed 12 December 2013). Data 2008 are lacking. Data 2009–2010: Belgian Senate, written question no. 5-4187. Available at: http://www.senate.be/www/?MIval=/Vragen/SVPrint&LEG=5&NR=4187&LANG=nl (last accessed 12 December 2013). Data 2011: Belgian Chamber of Representatives, 4th session of the 53rd term, document QRVA53 099. (Written questions and answers) (in Dutch/French), 4 February 2013. Available at: http://www.lachambre.be/QRVA/pdf/53/53K0099.pdf (last accessed 12 December 2013). Cells in italics denote that the precise figure is not known and imputed by interpolation between the last preceding and first following year in which the precise figure was known. Data total healthcare expenditure 2003–2010: Assurinfo. DE NATIONALE UITGAVEN IN DE GEZONDHEIDSZORG 9de editie. Nr. 26| Weekblad van 13 september 2012 (Dutch). Available at: http://www.assuralia.be/fileadmin/content/stats/03_Cijfers_per_tak/05_Gezondheid/06_Nationale_uitgaven_gezondheidszorg/NL/120913_NL_uitgaven2010_gezondheid.pdf *Recognition of palliative status entails a monthly lump sum and elimination of patient contribution to PC provision (by GPs, nurses and physiotherapists). †Included expenditure: funding for PC units with beds; funding for ‘palliative function’ (palliative support teams) for sensitisation, coordination, training and support of hospital personnel. ‡Included expenditure: funding for palliative day centres; funding for nursing homes with a government-recognised PC programme; funding for ‘palliative function’ (at least one GP and one nurse) for support, sensitisation and training of nursing home personnel. §Included expenditure: funding for PC federations and networks, for sensitisation, coordination, knowledge transfer, volunteer training and feedback/evaluation of PC services to government. GP, general practitioner (family physician).
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End of life demand, it strains to maintain or improve the quality of its services.21
REFERENCES 1 2
Strengths and limitations The EAPC Atlas employed an elaborate survey method to provide the best available estimate of per capita total number of PC services. Even so, the accuracy of the input data, based on key persons’ reports, can be questioned. Second, a same structural service can be labelled otherwise in different countries or have a different impact and effectiveness.22 Third, the number-ofservices indicator is overly sensitive in countries with a small population size (Luxembourg and Iceland). Fourth, the number of structural services does not inform about their output in delivery of services to the public, such as the total fraction of deaths preceded by professional PC or about the quality of PC, both arguably more important indicators. Also, some services ‘under the radar’ (eg, volunteer teams in the Netherlands,8 day-care centres in Belgium) are not considered structural in the EAPC Atlas, but could have a significant impact on PC provision.
3 4 5
6
7 8 9 10
CONCLUSIONS Does adding the ‘antibiotic’ of PAD to the Petri dish of society inhibit growth of PC resources and services? The Benelux data do not verify this concern. On the contrary, though similar growth in the absence of legal PAD can evidently not be disproven, the data suggest that PC has been furthered.23 24 In the Netherlands, PC was boosted by the availability of euthanasia.25 26 In Belgium and Luxembourg, the legislators explicitly required access to PC to be made universal as PAD became legal.14 16 After doubling the budget for PC in the run-up to the legalisation of PAD,23 24 in 2002 the Belgian legislators explicitly declared PC to be a basic patient right,27 28 thus anticipating the 2013 EAPC Prague Charter.29 A final comment is that the effects of legal PAD may still manifest on the longer term or in other ways. Therefore, developments in countries with and without legal PAD should be monitored, and indicators of output and quality of PC services (eg, patient outcomes) should be included. Future research might also investigate whether patients are nudged towards assisted dying because of insufficient PC. In order to ensure patients do not request PAD for lack of adequate PC, it is essential that nations considering legalising PAD, like did, endeavour to, as Belgium, Luxembourg and Québec,30 enhance PC services at the same time. Acknowledgements We are grateful to Timo Thibo of the Directorate-General for Health Care, Department Elderly and Palliative Care, for the aid in retrieving and interpreting the necessary data for Belgian government expenditure on PC. We are indebted to Professor Thierry Vansweevelt for information on the legislative process. We also thank Dr. Arsène Mullie for the insightful discussion of the results, and the EAPC Task Force on the Development of Palliative Care in Europe for providing the EAPC Atlas data. Contributors Both authors made substantial contributions to the conception or design of the work, the acquisition, analysis and interpretation of data for the work, and in drafting the work or revising it critically for important intellectual content; both authors gave final approval of the version to be published and agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. Funding The study did not require a funding grant. KC is Postdoctoral Fellow of the Research Foundation Flanders. The Research Foundation Flanders assures the author’s independence in design, interpretation, writing and publishing of this study.
11
12
13
14
15 16
17
18 19 20
21
22 23 24
25 26 27 28 29
Competing interests None. Provenance and peer review Not commissioned; externally peer reviewed. Data sharing statement The data are derived from publicly available sources. 660
30
Roy DJ, Rapin C-H. Regarding euthanasia. Eur J Palliat Care 1994;1(1):1–4. Finlay IG, Wheatley VJ, Izdebski C. The House of Lords Select Committee on the Assisted Dying for the Terminally III Bill: implications for specialist PC. Pall Med 2005;19(6):444–53. Materstvedt LJ, Clark D, Ellershaw J, et al. Euthanasia and physician-assisted suicide: a view from an EAPC Ethics Task Force. Pall Med 2003;17(2):97–101. Pereira J. Legalizing euthanasia or assisted suicide: the illusion of safeguards and controls. Curr Oncol 2011;18(2):e38–45. Chambaere K, Centeno C, Hernàndez EA, et al. PC Development in Countries with a Euthanasia Law. Report for the UK Commission on Assisted Dying Briefing Papers, submitted October 4th, 2011. http://www.commissiononassisteddying.co.uk/ wp-content/uploads/201/10/EAPC-Briefing-Paper-Palliative-Care-in-Countries-with-aEuthanasia-Law.pdf Bernheim JL, Chambaere K, Theuns P, et al. State of palliative care development in European countries with and without legally regulated physician-assisted dying. Health Care 2014;2(1):10–14. Centeno C, Clark D, Lynch T, et al. EAPC Atlas of PC in Europe 2007. http://www. eapc-taskforce-development.eu/documents/taskforce/ATLAS-EAPC-2007.pdf Centeno C, Lynch T, Donea O, et al. EAPC Atlas of Palliative Care in Europe 2013 —full edition. http://issuu.com/universidaddenavarra/docs/atlas_europa_full_edition Wright M, Wood J, Lynch T, et al. Mapping levels of palliative care development: a global view. J Pain Symptom Manage 2008;35(5):469–85. Lynch T, Connor S, Clark D. Mapping levels of palliative care development: a global update. J Pain Symptom Manage 2013;45(6):1094–106. Martin-Moreno J, Harris M, Gorgojo L, et al. Palliative care in the European Union. European Parliament Economic and Scientific Policy Department, 2008. IP/A/ENVI/ ST/2007–22.PE404.899. http://www.eapc-taskforce-development.eu/tfdocs.php Ahmedzai SH, Gomez-Batiste X, Engels Y, et al. Assessing organisations to improve palliative care in Europe. Nijmegen, NL, 2010. http://ec.europa.eu/eahc/documents/ news/Assessing_Organisations_to_Improve_Palliative_Care_in_Europe.pdf Economist Intelligence Unit. The quality of death. Ranking end-of-life care across the world. The Economist. Lien Foundation, 2010. http://www.eiu.com/site_info. asp?info_name=qualityofdeath_lienfoundation&page=noads&rf=0 Federal Evaluation Cell on Palliative Care. [Evaluation Report Palliative Care 2008] (Dutch). Brussels: Federal Government Department Public Health, Food Safety and Environment, DG Organisation Health Care Services, Cell Chronic, Elderly and PC, 2008. http://mailsystem.palliatief.be/accounts/15/attachments/rapporten/fed_ evaluatiecel_mai_2008_rapport_2008_nl.pdf Belgian Official Collection of the Laws. [Law concerning PC—August 22, 2002] (Dutch/French). 2002. http://www.npzl.be/files/107a_B1_Wet_palliatieve_zorg.pdf Central Service of Legislation. [Legislation regulating palliative care as well as euthanasia and assisted suicide] (French). Memorial. Journal Officiel du GrandDuché de Luxembourg. http://www.legilux.public.lu/leg/a/archives/2009/0046/a046. pdf Van den Block L, Deschepper R, Bilsen J, et al. Euthanasia and other end of life decisions and care provided in final three months of life: nationwide retrospective study in Belgium. BMJ 2009;339:b2772. De Roo ML, Leemans K, Claessen SJ, et al. Quality indicators for palliative care: update of a systematic review. J Pain Symptom Manage 2013;46(4):556–72. Chambaere K, Bilsen J, Cohen J, et al. Trends in medical end-of-life decision making in Flanders, Belgium 1998–2001–2007. Med Decis Making 2011;31(3):500–10. Van Wesemael Y, Cohen J, Bilsen J, et al. Process and outcomes of euthanasia requests under the Belgian act on euthanasia: a nationwide survey. J Pain Symptom Manage 2011;42(5):721–33. Vanden Berghe P, Mullie A, Desmet M, et al. Assisted dying-the current situation in Flanders: euthanasia embedded in palliative care. Eur J Palliative Care 2013;20 (6):266–72. von Gunten CF. Humpty-dumpty syndrome. Palliat Med 2007;21(6):461–2. Bernheim JL, Deschepper R, Distelmans W, et al. Development of palliative care and legalisation of euthanasia: antagonism or synergy?. BMJ 2008;336(7649):864–7. Bernheim JL, Distelmans W, Mullie A, et al. Questions and answers on the Belgian model of integral end-of-life care: heresy, experiment, prototype. ‘Eu-euthanasia’: the close historical, and evidently synergistic, relationship between palliative care and euthanasia in Belgium: an interview with a doctor involved in the early development of both and two of his successors. J Bioeth Inquiry 2014;11:507–29. Gordijn B, Janssens R. The prevention of euthanasia through palliative care: New developments in The Netherlands. Patient Educ Couns 2000;41:35–46. Gordijn B, Janssens R. Euthanasia and palliative care in The Netherlands: an analysis of the latest developments. Health Care Anal 2004;12(3):195–207. Sénat, 2000–2001, Document législatif n° 2-244/1. Sénat, 2000–2001, Document législatif n° 2-246/1. Radbruch L, de Lima L, Lohmann D, et al. The Prague Charter: urging governments to relieve suffering and ensure the right to palliative care. Palliat Med 2013;27:101–2. Assemblée Nationale du Québec. Projet de loi n°52 : Loi concernant les soins de fin de vie [Bill 52: An Act concerning end of life care]. 2014. http://www.assnat.qc.ca/ fr/travauxparlementaires/projets-loi/projet-loi-52-41-1.html.n
Chambaere K, Bernheim JL. J Med Ethics 2015;41:657–660. doi:10.1136/medethics-2014-102116
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Does legal physician-assisted dying impede development of palliative care? The Belgian and Benelux experience Kenneth Chambaere and Jan L Bernheim J Med Ethics 2015 41: 657-660 originally published online February 3, 2015
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End of life
Does legal physician-assisted dying impede development of palliative care? The Belgian and Benelux experience Kenneth Chambaere, Jan L Bernheim End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium Correspondence to Dr Kenneth Chambaere, Endof-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Laarbeeklaan 103, Brussels B-1090, Belgium; [email protected] Received 27 February 2014 Revised 13 November 2014 Accepted 15 January 2015 Published Online First 3 February 2015
ABSTRACT Background In 2002, physician-assisted dying was legally regulated in the Netherlands and Belgium, followed in 2009 by Luxembourg. An internationally frequently expressed concern is that such legislation could stunt the development of palliative care (PC) and erode its culture. To study this, we describe changes in PC development 2005–2012 in the permissive Benelux countries and compare them with non-permissive countries. Methods Focusing on the seven European countries with the highest development of PC, which include the three euthanasia-permissive and four non-permissive countries, we compared the structural service indicators for 2005 and 2012 from successive editions of the European Atlas of Palliative Care. As an indicator for output delivery of services to patients, we collected the amounts of governmental funding of PC 2002–2011 in Belgium, the only country where we could find these data. Results The rate of increase in the number of structural PC provisions among the compared countries was the highest in the Netherlands and Luxembourg, while Belgium stayed on a par with the UK, the benchmark country. Belgian government expenditure for PC doubled between 2002 and 2011. Basic PC expanded much more than endowment-restricted specialised PC. Conclusions The hypothesis that legal regulation of physician-assisted dying slows development of PC is not supported by the Benelux experience. On the contrary, regulation appears to have promoted the expansion of PC. Continued monitoring of both permissive and nonpermissive countries, preferably also including indicators of quantity and quality of delivered care, is needed to evaluate longer-term effects.
INTRODUCTION
▸ http://dx.doi.org/10.1136/ medethics-2014-102655
To cite: Chambaere K, Bernheim JL. J Med Ethics 2015;41:657–660.
Legal regulation of physician-assisted dying (PAD) —euthanasia and physician-assisted suicide—is hotly debated worldwide. One pragmatic concern is that allowing PAD will stunt the development of palliative care (PC) culture, resources and provision.1–4 Some patients eligible for PC might forgo PC or choose early assisted dying, lowering the demand for PC. More importantly, if PAD is available as a ‘quick fix’, policymakers might be tempted to reduce supply by saving on scarce resources for PC. Thus, the culture of competent and compassionate care for the terminally ill might be set back. This concern was not substantiated in a report of the European Association for Palliative Care (EAPC) to the UK Commission on Assisted Dying and an international comparative analysis
paper, both on the basis of survey data collected in 2005 by the EAPC Task Force on the Development of Palliative Care.5 6 However, these two studies on the state of development of PC left open the question whether the rate of PC development was affected by PAD legislation. We here describe changes in PC development in the permissive Benelux countries compared with non-permissive countries.
METHOD We use data from the two editions, 20077 and 2013,8 of the EAPC Atlas of Palliative Care in Europe. EAPC twice systematically surveyed national PC organisations and key experts in each country to tally per capita structural PC resources (home care teams, hospital PC units and palliative support teams, hospices and PC beds). The survey methods are detailed in the atlases.7 8 Other sources of indicators of nations’ PC development are more rudimentary and do not provide specific comparable diachronic data.9–13 Next to the Benelux countries, we show data for Iceland, the UK, Sweden and Ireland, the countries that in both EAPC Atlas editions together with the Benelux constitute the top seven nations in per capita number of structural resources for PC.7 8 We also present Belgian government expenditure for PC from 2002 until 2011. Similar data for other countries could not be retrieved.
RESULTS Structural PC resources 2005–2012 in the top seven Western European countries Countries are listed according to rank in structural PC services per million inhabitants in 2005 (table 1). Belgium remained stable at 18.08 services per million. The indicator in the UK slightly rose by 0.70 to 15.43 per million inhabitants. Large increases were seen in Sweden (from 5.03 to 16.64), Ireland (from 10.93 to 18.12), Luxembourg (from 8.78 to 19.11) and the Netherlands (from 8.45 to 15.32). Luxembourg and the Netherlands are the only countries with an increase in PC beds—respectively 47.40 and 17.28 per million; the other countries saw a decrease ranging from 0.77 per million in Belgium to 12.63 in Sweden.
Government expenditure for PC 2002–2011 in Belgium Between 2002, when euthanasia was legally regulated, and 2011, the government expenditure for PC in Belgium went from 89.77 to 186.98 million euros, an increase of 108% (about 12% annually,
Chambaere K, Bernheim JL. J Med Ethics 2015;41:657–660. doi:10.1136/medethics-2014-102116
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55 (3.29) −29 (−1.86) The Netherlands 138 (8.45)
256 (15.32) +118 (+6.87)
54 (3.31)
157 (9.39)
+103 (+6.08)
0 (0)
44 (2.63)
+44 (+2.63)
0 (0)
0 (0)
0 (0)
84 (5.15)
716 (43.87) 1022 (61.15) +306 (+17.28)
34 (64.96) +1 (+1.91) 1 (1.91) 0 (0) +2 (+3.82) 2 (3.82) 0 (−0.57) 0 (0) 2 (3.82) 2 (4.39) +3 (+5.16) 5 (9.55) 2 (4.39) +6 (+10.33) 4 (8.78) Luxembourg
10 (19.11)
44 (10.93) Ireland
whereas total healthcare expenditure increased by only 2.34% annually between 2003 and 2010) (table 2). Expenditure for PC at home and in home-replacement settings more than tripled, and spending in hospitals increased by 34%. Seventy per cent of the total increase in PC expenditure was for home care, home palliative nursing accounting for 52.4% (not in table).
DISCUSSION Summary of main results
Data are number of structural resources (services per million inhabitants). Data for 20057: except Belgium (data in European Association for Palliative Care Atlas applied to only one region).14 Data for 2012.8 PC beds not included in ‘all resources’ figures. *Mixed (hospital and home care) teams resource not surveyed in 2005. PCU, palliative care unit; PST, palliative support team.
+9 (−2.44)
+26 (+47.40)
156 (34.06)
105 (11.61) 158 (16.64) Sweden
83 (18.12)
+39 (+7.19)
30 (7.45)
39 (8.52)
+9 (+1.07)
14 (3.48)
35 (7.64)
+21 (+4.17)
0 (0)
0 (0)
0 (0)
+9 (+1.97) 9 (1.97) 0 (0)
8 (17.56)
−90 (−12.63) 510 (53.71)
147 (36.50)
−24 (−2.84) 3180 (53.10) 3156 (50.26)
+6 (+0.61)
+31 (+0.37)
11 (1.16) 5 (0.55) +26 (+2.74)
104 (1.66) +104 (+1.66) 158 (2.64) 189 (3.01)
26 (2.74) 0 (0) 94 (9.90)
+44 (+4.37)
337 (5.37)
−23 (−2.69)
50 (5.53)
−29 (−0.75) 356 (5.94) 339 (5.40)
27 (2.84) 50 (5.53)
368 (6.14) 882 (14.73) 969 (15.43) The UK
+53 (+5.03)
3 (9.14) 3 (10.17)
160 (15.32) 165 (15.30) +7 (+0.08)
+1 (+0.98) 7 (21.32) 6 (20.34)
188 (18.00) 195 (18.08) Belgium
Iceland
−19 (−0.58) 0 (0)
0 (0)
0 (0) 0 (0)
0 (−0.08) 0 (0)
+1 (+2.01) 4 (12.18)
28 (2.60)
3 (10.17)
28 (2.68)
0 (−1.03)
+5 (−0.02)
2005* 2012 Δ 2012 2005
Home care teams
Δ 2012 2005
Hospital (PCU/PST)
Δ 2012 2005
All resources
+87 (+0.70)
0 (0)
658
600 (66.34)
0 (−5.85)
+4 (−0.77)
17 (51.78) 17 (57.64)
375 (35.90) 2 (0.19) 0 (0)
0 (0)
+2 (+0.19)
0 (0) 0 (0)
Δ 2012 2005
PC hospices
Table 1
Structural resources for palliative care (PC) 2005–2012 in seven Western European countries
Mixed teams
Δ
0 (0)
2005
PC beds
2012
Δ
379 (35.13)
End of life
Luxembourg and the Netherlands made large strides in increasing their PC resources between 2005 and 2012 and moved closer to the level of the top four of European countries, which includes Belgium. Belgium, like Iceland and the UK, has remained roughly at the same level but with 18.08 services per million inhabitants still ranks among the best European countries. The overall Belgian PC expenditure doubled (with palliative home care by far accounting for the largest increase) and grew at several times the rate of overall healthcare.
Explanation of the findings In the Netherlands and Luxembourg, with large increases in total PC services, and the only ones increasing per capita numbers of PC beds, there is no indication that PC was impeded. Luxembourg has notably doubled its services: as in Belgium in 2002,14 15 the Luxembourg 2009 law de-penalising PAD was accompanied by a twin law declaring PC a basic patient right, mandating and funding universal access to PC and fixing the number of institutional and home care PC services.16 In Belgium, the determination of number of services by law explains the paucity of new structural initiatives since 2005. Room for growth was in the output delivery of PC services, as approximated by expenditure. The other two of the top three nations in 2005, Iceland and the UK, likewise saw only a modest increase in number of structural resources, in stark contrast to the steep rise in the countries ranked just below. In any case, that Belgian PC appears on a par with the UK, the cradle of PC, with the longest tradition of advocacy and provision, is an indication of its advanced development. For Belgium, we see that the stability of the number of structural resources obscures real growth of existing PC services’ output: the annual rise of 12% in government expenditure far exceeds the 2.34% growth of overall healthcare expenditure. The growth of PC results from legislative measures granting eligible patients ‘palliative status’, with a lump sum, benefits and reimbursement for PC.14 15 PC at home, the setting responsible for 70% of the total increase in PC expenditure, is almost fully reimbursed in Belgium on the condition that the caregiver is recognised as trained in (basic) PC. Consequently, a large and increasing number of general practitioners and nurses are trained in PC in line with explicit policy to privilege the firstline daily care for patients and make it demand driven.14 15 Consequently, the penetrance of PC is high in Belgium: in 2007, 41% of all non-sudden death cases benefited from professional multidisciplinary PC, and this rose to 47% in 2010.17 18 However, two considerations mitigate the spectacular expansion of PC as inferred from increased spending on home care. First, some nursing care that before the PC law was provided by conventional home care (eg, for advanced neurological conditions) became funded by PC. Second, the only modest increase in the funding of specialised PC teams is a concern, particularly in light of the increasing frequency of work-intensive euthanasia requests, which very often befall PC specialists.19 20 The principal PC organisation observes that in the face of increasing Chambaere K, Bernheim JL. J Med Ethics 2015;41:657–660. doi:10.1136/medethics-2014-102116
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Chambaere K, Bernheim JL. J Med Ethics 2015;41:657–660. doi:10.1136/medethics-2014-102116
Table 2
Government expenditure on palliative care (PC) 2002–2011 in Belgium (in million euros) Year
Increase 2002–2011
Setting
2002
2003
2004
2005
2006
2007
2008
2009
2010
2011
Absolute
Relative (%)
Proportion (%)
Annual (%)
PC at home multidisciplinary PC teams (specialised) GP visits/nursing/physiotherapy (basic) palliative status and benefits* PC in hospitals† (specialised) PC in home replacement settings‡ (basic) PC partnerships§ Total PC expenditure (all settings) Total healthcare expenditure % of total healthcare expenditure for PC
32.7 7.14 18.3 7.25 49.5 5.62 2.02 89.8
44.0 7.98 28.6 7.46 50.0 6.46 2.02 102.5 28827.15 0.36%
53.7 8.04 37.5 8.22 50.9 6.80 2.01 113.4 30227.62 0.38%
58.6 8.28 42.1 8.19 50.8 7.15 2.00 118.5 30606.00 0.39%
63.4 8.17 47.0 8.27 51.7 7.49 2.02 124.6 29826.05 0.42%
73.6 9.66 55.3 8.68 55.3 7.83 2.03 138.8 30946.35 0.45%
82.6 9.49 63.4 9.73 60.6 10.4 2.06 155.6 31780.10 0.49%
91.6 9.33 71.4 10.8 65.8 12.9 2.09 172.3 33348.34 0.52%
97.1 9.40 76.7 11.1 65.6 15.4 2.04 180.2 33549.37 0.54%
100.6 9.94 79.6 11.0 66.5 17.9 2.03 187.0
67.9 2.8 61.3 3.8 17.0 12.3 0.01 97.2 4722.22
208 39 335 52 34 219 1 108 16.38
70 3 63 4 18 13 0
23 4 37 6 4 24 0 12 2.34
Data are inflation adjusted, using the World Economic Outlook (WEO) EconStats rates, IMF: http://www.econstats.com/weo/V016.htm (last accessed 1 October 2013). Source data: Data 2002–2007: Federal Evaluation Cell on Palliative Care. (Evaluation Report Palliative Care 2008) (in Dutch). Brussels: Federal Government Department Public Health, Food Safety and Environment, DG Organisation Health Care Services, Cell Chronic, Elderly and Palliative Care, 2008. Available at: http://www.health.belgium.be/internet2Prd/groups/public/@public/@dg1/@acutecare/documents/ie2divers/15720532.pdf (last accessed 12 December 2013). Data 2008 are lacking. Data 2009–2010: Belgian Senate, written question no. 5-4187. Available at: http://www.senate.be/www/?MIval=/Vragen/SVPrint&LEG=5&NR=4187&LANG=nl (last accessed 12 December 2013). Data 2011: Belgian Chamber of Representatives, 4th session of the 53rd term, document QRVA53 099. (Written questions and answers) (in Dutch/French), 4 February 2013. Available at: http://www.lachambre.be/QRVA/pdf/53/53K0099.pdf (last accessed 12 December 2013). Cells in italics denote that the precise figure is not known and imputed by interpolation between the last preceding and first following year in which the precise figure was known. Data total healthcare expenditure 2003–2010: Assurinfo. DE NATIONALE UITGAVEN IN DE GEZONDHEIDSZORG 9de editie. Nr. 26| Weekblad van 13 september 2012 (Dutch). Available at: http://www.assuralia.be/fileadmin/content/stats/03_Cijfers_per_tak/05_Gezondheid/06_Nationale_uitgaven_gezondheidszorg/NL/120913_NL_uitgaven2010_gezondheid.pdf *Recognition of palliative status entails a monthly lump sum and elimination of patient contribution to PC provision (by GPs, nurses and physiotherapists). †Included expenditure: funding for PC units with beds; funding for ‘palliative function’ (palliative support teams) for sensitisation, coordination, training and support of hospital personnel. ‡Included expenditure: funding for palliative day centres; funding for nursing homes with a government-recognised PC programme; funding for ‘palliative function’ (at least one GP and one nurse) for support, sensitisation and training of nursing home personnel. §Included expenditure: funding for PC federations and networks, for sensitisation, coordination, knowledge transfer, volunteer training and feedback/evaluation of PC services to government. GP, general practitioner (family physician).
End of life
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End of life demand, it strains to maintain or improve the quality of its services.21
REFERENCES 1 2
Strengths and limitations The EAPC Atlas employed an elaborate survey method to provide the best available estimate of per capita total number of PC services. Even so, the accuracy of the input data, based on key persons’ reports, can be questioned. Second, a same structural service can be labelled otherwise in different countries or have a different impact and effectiveness.22 Third, the number-ofservices indicator is overly sensitive in countries with a small population size (Luxembourg and Iceland). Fourth, the number of structural services does not inform about their output in delivery of services to the public, such as the total fraction of deaths preceded by professional PC or about the quality of PC, both arguably more important indicators. Also, some services ‘under the radar’ (eg, volunteer teams in the Netherlands,8 day-care centres in Belgium) are not considered structural in the EAPC Atlas, but could have a significant impact on PC provision.
3 4 5
6
7 8 9 10
CONCLUSIONS Does adding the ‘antibiotic’ of PAD to the Petri dish of society inhibit growth of PC resources and services? The Benelux data do not verify this concern. On the contrary, though similar growth in the absence of legal PAD can evidently not be disproven, the data suggest that PC has been furthered.23 24 In the Netherlands, PC was boosted by the availability of euthanasia.25 26 In Belgium and Luxembourg, the legislators explicitly required access to PC to be made universal as PAD became legal.14 16 After doubling the budget for PC in the run-up to the legalisation of PAD,23 24 in 2002 the Belgian legislators explicitly declared PC to be a basic patient right,27 28 thus anticipating the 2013 EAPC Prague Charter.29 A final comment is that the effects of legal PAD may still manifest on the longer term or in other ways. Therefore, developments in countries with and without legal PAD should be monitored, and indicators of output and quality of PC services (eg, patient outcomes) should be included. Future research might also investigate whether patients are nudged towards assisted dying because of insufficient PC. In order to ensure patients do not request PAD for lack of adequate PC, it is essential that nations considering legalising PAD, like did, endeavour to, as Belgium, Luxembourg and Québec,30 enhance PC services at the same time. Acknowledgements We are grateful to Timo Thibo of the Directorate-General for Health Care, Department Elderly and Palliative Care, for the aid in retrieving and interpreting the necessary data for Belgian government expenditure on PC. We are indebted to Professor Thierry Vansweevelt for information on the legislative process. We also thank Dr. Arsène Mullie for the insightful discussion of the results, and the EAPC Task Force on the Development of Palliative Care in Europe for providing the EAPC Atlas data. Contributors Both authors made substantial contributions to the conception or design of the work, the acquisition, analysis and interpretation of data for the work, and in drafting the work or revising it critically for important intellectual content; both authors gave final approval of the version to be published and agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. Funding The study did not require a funding grant. KC is Postdoctoral Fellow of the Research Foundation Flanders. The Research Foundation Flanders assures the author’s independence in design, interpretation, writing and publishing of this study.
11
12
13
14
15 16
17
18 19 20
21
22 23 24
25 26 27 28 29
Competing interests None. Provenance and peer review Not commissioned; externally peer reviewed. Data sharing statement The data are derived from publicly available sources. 660
30
Roy DJ, Rapin C-H. Regarding euthanasia. Eur J Palliat Care 1994;1(1):1–4. Finlay IG, Wheatley VJ, Izdebski C. The House of Lords Select Committee on the Assisted Dying for the Terminally III Bill: implications for specialist PC. Pall Med 2005;19(6):444–53. Materstvedt LJ, Clark D, Ellershaw J, et al. Euthanasia and physician-assisted suicide: a view from an EAPC Ethics Task Force. Pall Med 2003;17(2):97–101. Pereira J. Legalizing euthanasia or assisted suicide: the illusion of safeguards and controls. Curr Oncol 2011;18(2):e38–45. Chambaere K, Centeno C, Hernàndez EA, et al. PC Development in Countries with a Euthanasia Law. Report for the UK Commission on Assisted Dying Briefing Papers, submitted October 4th, 2011. http://www.commissiononassisteddying.co.uk/ wp-content/uploads/201/10/EAPC-Briefing-Paper-Palliative-Care-in-Countries-with-aEuthanasia-Law.pdf Bernheim JL, Chambaere K, Theuns P, et al. State of palliative care development in European countries with and without legally regulated physician-assisted dying. Health Care 2014;2(1):10–14. Centeno C, Clark D, Lynch T, et al. EAPC Atlas of PC in Europe 2007. http://www. eapc-taskforce-development.eu/documents/taskforce/ATLAS-EAPC-2007.pdf Centeno C, Lynch T, Donea O, et al. EAPC Atlas of Palliative Care in Europe 2013 —full edition. http://issuu.com/universidaddenavarra/docs/atlas_europa_full_edition Wright M, Wood J, Lynch T, et al. Mapping levels of palliative care development: a global view. J Pain Symptom Manage 2008;35(5):469–85. Lynch T, Connor S, Clark D. Mapping levels of palliative care development: a global update. J Pain Symptom Manage 2013;45(6):1094–106. Martin-Moreno J, Harris M, Gorgojo L, et al. Palliative care in the European Union. European Parliament Economic and Scientific Policy Department, 2008. IP/A/ENVI/ ST/2007–22.PE404.899. http://www.eapc-taskforce-development.eu/tfdocs.php Ahmedzai SH, Gomez-Batiste X, Engels Y, et al. Assessing organisations to improve palliative care in Europe. Nijmegen, NL, 2010. http://ec.europa.eu/eahc/documents/ news/Assessing_Organisations_to_Improve_Palliative_Care_in_Europe.pdf Economist Intelligence Unit. The quality of death. Ranking end-of-life care across the world. The Economist. Lien Foundation, 2010. http://www.eiu.com/site_info. asp?info_name=qualityofdeath_lienfoundation&page=noads&rf=0 Federal Evaluation Cell on Palliative Care. [Evaluation Report Palliative Care 2008] (Dutch). Brussels: Federal Government Department Public Health, Food Safety and Environment, DG Organisation Health Care Services, Cell Chronic, Elderly and PC, 2008. http://mailsystem.palliatief.be/accounts/15/attachments/rapporten/fed_ evaluatiecel_mai_2008_rapport_2008_nl.pdf Belgian Official Collection of the Laws. [Law concerning PC—August 22, 2002] (Dutch/French). 2002. http://www.npzl.be/files/107a_B1_Wet_palliatieve_zorg.pdf Central Service of Legislation. [Legislation regulating palliative care as well as euthanasia and assisted suicide] (French). Memorial. Journal Officiel du GrandDuché de Luxembourg. http://www.legilux.public.lu/leg/a/archives/2009/0046/a046. pdf Van den Block L, Deschepper R, Bilsen J, et al. Euthanasia and other end of life decisions and care provided in final three months of life: nationwide retrospective study in Belgium. BMJ 2009;339:b2772. De Roo ML, Leemans K, Claessen SJ, et al. Quality indicators for palliative care: update of a systematic review. J Pain Symptom Manage 2013;46(4):556–72. Chambaere K, Bilsen J, Cohen J, et al. Trends in medical end-of-life decision making in Flanders, Belgium 1998–2001–2007. Med Decis Making 2011;31(3):500–10. Van Wesemael Y, Cohen J, Bilsen J, et al. Process and outcomes of euthanasia requests under the Belgian act on euthanasia: a nationwide survey. J Pain Symptom Manage 2011;42(5):721–33. Vanden Berghe P, Mullie A, Desmet M, et al. Assisted dying-the current situation in Flanders: euthanasia embedded in palliative care. Eur J Palliative Care 2013;20 (6):266–72. von Gunten CF. Humpty-dumpty syndrome. Palliat Med 2007;21(6):461–2. Bernheim JL, Deschepper R, Distelmans W, et al. Development of palliative care and legalisation of euthanasia: antagonism or synergy?. BMJ 2008;336(7649):864–7. Bernheim JL, Distelmans W, Mullie A, et al. Questions and answers on the Belgian model of integral end-of-life care: heresy, experiment, prototype. ‘Eu-euthanasia’: the close historical, and evidently synergistic, relationship between palliative care and euthanasia in Belgium: an interview with a doctor involved in the early development of both and two of his successors. J Bioeth Inquiry 2014;11:507–29. Gordijn B, Janssens R. 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Does legal physician-assisted dying impede development of palliative care? The Belgian and Benelux experience Kenneth Chambaere and Jan L Bernheim J Med Ethics 2015 41: 657-660 originally published online February 3, 2015
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