Select Committee on Assisted Dying for the Terminally Ill Bill Minutes of Evidence


Memorandum by The End-of-Life Care Research Group, Vrije Universiteit Brussels

1.  THE END-OF-LIFE CARE RESEARCH GROUP

    —    The research programme of the End-of-life Care Research Group of the Vrije Universiteit Brussel consists of two inter-related research areas. The first is the needs and quality of palliative terminal care (PTC). The second is medical end-of-life decisions (ELDs) that effectively or potentially shorten the life of patients (eg voluntary euthanasia, physician-assisted suicide, alleviation of pain and symptoms with a potential life shortening effect, withholding or withdrawing of life prolonging treatment, etc).

    —    The programme includes clinical and epidemiological studies involving the interdisciplinary study of PTC and ELDs. The programme builds on a line of research on end-of-life decisions that has been carried out over the past six years and resulted in many publications in eg Bioethics, Palliative Medicine and The Lancet.

    —    Main topics of the research programme are medical practice at the end of life in Flanders, Belgium; the involvement of different caregivers; the decisions making process; and international comparative studies.

    —    I can provide a full CV of all my work and publications on request.

2.  THE IMPORTANCE OF THE END-OF-LIFE CARE RESEARCH GROUP

    —    Over the past decades, more than ever, end-of-life care has attracted the interest of the public, policy makers, and healthcare professionals. Many factors have contributed to this. In all developed countries, ageing of the population has resulted in a growing need for geriatric care in general and specifically end-of-life care, since this groups accounts for the vast majority of decedents. In addition there has been a growing recognition in many countries that end of life care is less than optimal.

    —    Many dying patients still experience pain and other symptoms, considerably limiting the quality of their remaining lifetime. Because of for example, "morphinofobia", there are indications that all too often physicians withhold sufficient pain medication for dying patients.[27]

    —    There is a sense that the health care systems have failed to educate health care professionals to provided the adequate services to ensure good care for the dying.

    —    Moreover, the intensive discussion about voluntary euthanasia and physician-assisted death has focused attention on the care of the dying and the factors that might spur a patient to request administration of drugs to hasten death.

    —    In Belgium, uniquely in the world, the regulation of voluntary euthanasia and the expansion of palliative care were intimately connected, and co-evolved synergistically.

3.  TWO IMPORTANT STUDIES FOR THE SELECT COMMITTEE TO CONSIDER

    —    As an experienced researcher in the area of palliative terminal care (PTC) and end of life decisions (ELDs), I am a privileged observer of the relevant societal and legal developments on the issue.

    —     For this submission there are two research studies I have been involved in that I would like to highlight. I attach both these research papers to this memorandum for your attention.

4.  STUDY 1: END OF LIFE DECISIONS IN MEDICAL PRACTICE IN FLANDERS, BELGIUM: A NATIONWIDE STUDY (DELIENS ET AL 2000)[28]

    —    This study examined death certificates relating to about 2,000 deaths in Flanders, Belgium—before legislation for voluntary euthanasia came into force.

    —    We found that the estimated incidence of voluntary euthanasia in medical practice in Flanders at this time was 1.1 per cent of all yearly deaths.

    —    We concluded from this study that despite voluntary euthanasia being considered murder under criminal law, it did exist.

    —    There is some concern about the pressures that vulnerable people would be exposed to if voluntary euthanasia were to be legalised. Netherlands data shows that there is no evidence for this argument.[29]

    —    In addition, our study found that voluntary euthanasia was practiced significantly more often among higher educated patients than among lower educated ones. This data suggests that contrary to concerns about the so called "slippery slope", social inequalities of the traditional sense also exist within voluntary euthanasia practice.

    —    The rate of termination of life without explicit request was far higher in this study (3.2 per cent) than in the Netherlands (0.7 per cent).[30]

    —    In this study we concluded that if anything, regulation of voluntary euthanasia appears to be associated with a reduction of ethically dubious practices of life termination. This is perhaps because less attention is given to those requirements of careful end of life practice in a society with a restrictive approach than in one with an open approach that tolerates and regulates voluntary euthanasia and physician-assisted suicide.

5.  STUDY 2: END OF LIFE DECISION-MAKING IN SIX EUROPEAN COUNTRIES: DESCRIPTIVE STUDY (VAN DER HEIDE ET AL 2003)[31]

    —    This study involved a European comparison of ELDs across six countries: the Netherlands, Belgium, Switzerland, Italy, Sweden and Denmark.

    —    Data showed that the Netherlands (followed by Belgium and Switzerland) consistently had the best communication between physicians and their patients and families concerning ELDs. This highlights the benefits of an open and transparent system with regards to ELDs.

    —    In this study, 92 per cnet of ELDs in the Netherlands were discussed with competent patients; followed by 78 per cent in Switzerland and 67 per cent in Belgium. This is compared to Denmark (58 per cent), Italy (42 per cent) and Sweden (38 per cent)—countries that have a restrictive approach to voluntary euthanasia and physician-assisted suicide.

    —    Where a patient was incompetent, 85 per cent of physicians in the Netherlands. (77 per cent in Belgium) discussed end of life decisions (including but not exclusive to life termination without explicit request) with relatives. This compares to only 39 per cent of cases in Sweden and Italy and 52 per cent of cases in Denmark.

    —    This study also serves to show, again, that the slippery slope has not occurred in the Netherlands. In this study, in all countries—except the Netherlands—termination of life without explicit request happened more frequently than voluntary euthanasia and physician-assisted suicide.

6.  TO CONCLUDE

    —    One of the important motivations for legally regulating voluntary euthanasia in Belgium was the high ratio between rates of life termination without explicit request and voluntary euthanasia (3.2 per cent of all deaths compared to 1.1 per cent for voluntary euthanasia).

    —    It is my conclusion that the question should be not whether voluntary euthanasia is to be part of end-of-life care (for, whether the practice is legislated for or not, it already is), but how it is practiced and integrated into end-of-life care.

    —    In Belgium, where voluntary euthanasia now has legislation, the focus of the debate has moved from an ethical and ideological debate towards the development of requirements of prudent practice and of guidelines for good medical practice at the end of life.

    —    Should you wish to discuss these issues with me further, please contact me at the above postal or email address.

August 2004



27   Deliens L Ganzini L, Vander Stichele R, The use of drugs to hasten death. Pharmacoepidemiologu and Drug Safety 2004; 13, 113-115. Back

28   Deliens L, Mortier F, Bilson J, Cosyns M, Vander Stichele R, Vanoverloop J, Ingels K, End-of-life decisions in medical practice in Flanders, Belgium: A nationwide survey. The Lancet 2000; 356: 1806-1811. Back

29   Onwuteaka-Philipsen BD, van der Heide A, Koper D, Keij-Deerenberg I, Rietjens JA, Rurup ML, Vrakking AM, Georges JJ, Muller MT, van der Wal G, van der Maas PJ, Voluntary euthanasia and other end-of-life decisions in the Netherlands in 1990, 1995 and 2001. The Lancet 2003; 362: 395-399. Back

30   Onwuteaka-Philipsen BD et al Lancet 2003. Back

31   van der Heide A, Deliens L, Faisst K, Nilstun T, Norup M, Paci E, van der Wal G, van der Maas PJ, End-of-life decision-making in six European countries: descriptive study. The Lancet 2003; 362: 345-350. Back


 
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