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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 non-permissive countries, preferably also including indicators of quantity and quality of delivered care, is needed to evaluate longer-term effects.
- Euthanasia
- Palliative Care
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Introduction
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).
Structural resources for palliative care (PC) 2005–2012 in seven Western European countries
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, 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).
Government expenditure on palliative care (PC) 2002–2011 in Belgium (in million euros)
Discussion
Summary of main results
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 first-line 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 demand, it strains to maintain or improve the quality of its services.21
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-of-services 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.
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.
Acknowledgments
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.
References
Footnotes
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.
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement The data are derived from publicly available sources.
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