Whilst we do not want to preoccupy ourselves with euthanasia, it seems that on the other hand health care professionals in many countries, including Malta do indeed preoccupy themselves with this issue and believe that by providing the necessary pain relief, or, by omitting to give extraordinary, disproportionate or futile treatment they are committing active or passive euthanasia respectively. In fact even many patients and relatives perceive this and doctors who actually are willing to treat properly are preoccupied with perceptions of morality of patients and family, and even litigation. As in many countries there is scant legislation to act as a guideline. In Malta, however, the Medical Council guidelines are now recognised by law and having guidelines provided to doctors will be helpful.
However the issue is not only providing educational material to doctors, but educating the public and the religious leader. The latter so that they understand their rights and what is morally permissible and the former to make sure that they can communicate effectively in this regard.
Harmonisation and Dissemination of Best Practice, Educating and Alleviating concerns of Health Care Professionals on the proper practice of End Of Life.
The Endcare project brings together leading academic institutions and researchers, including scholars from the Pontifical Academy for Life, UNESCO, EthiMed (the network of Mediterranean Bioethicists), the Fondazione San Raffaele and the Catholic University of Leuven as well as leading practitioners in the field from Malta, the UK, the Republic of Ireland, Italy, France, Belgium and Holland.
It will be addressing the critical issue of end of life treatment and, whilst repudiating euthanasia in all its forms, will examine the short comings of health care professionals, who at one extreme may be recommending extraordinary measures of nutrition, hydration and advanced life support systems at the very end of life and not accepting death as the inevitable outcome, and at the other extreme not even giving sufficient pain relief for those who need it for fear of hastening the patient's demise.
There are morally acceptable guidelines, put forward by religious institutions including the Catholic Church, which can make the end of life more comfortable and which, indeed, can have a significant and disproportionate impact on the reduction of economic costs, although the latter is certainly not the main aim of the project.
It is proposed that a curriculum framework and a complementary care protocol incorporating identified best practice from diverse jurisdictions throughout the European Union be developed and implemented in the fullest respect for ethical, moral, medical and socio-political considerations. A significant amount of analysis and research, networking, teaching and evaluation activities will be required to complement the research project as a whole.
Due to the complexity of the relevant academic, medical, moral, ethical, legal and social issues involved, across the European Community, the project will definitely require as well close and continuous management of the deliverables in order to achieve the desired level of intellectual output. The project will also seek to identify effective training and political pathways for translating project outcomes into practice throughout the European Community.
EndCare aims to address the concerns of health care professionals in providing optimal care at the end of life. Concerns such as inadequate pain relief, concerns with palliative sedation, and who decides about extraordinary and disproportionate care, especially futile treatment have been identified in several countries. It is indeed a pity when someone says that a relative died in pain or in distress or the family were concerned that even in the final days health professionals insisted on taking blood and inserting drips, notwithstanding thrombosed veins and have to stab a patient several times before one can insert a venflow when most veins are collapsed. Whilst concerns with hydration and nutrition are important one questions why, when these become futile and disproportionate, they are not stopped.
The project therefore will not discuss euthanasia, and neither the physiological questions such as whether hydration is indeed at the end of life. These questions are technical and beyond the scope of our discussions. Rather, we depart from a point when, towards the final hours all agree that something is futile, or that the patient is distressed, but no proper action is always taken when there are clear moral guidelines. We shall therefore study why this occurs as the reasons may differ in various countries, from fear of doing the wrong moral thing, lack of legal frameworks, lack of training, or fear of litigation to a lack of a legal framework.
One cannot overlook experiences such as the Liverpool Care Pathway, which was a very good Palliative Care pathway addressing concerns in societies in the UK where Hospices were not existent, but which turned out to be applied inappropriately – in palliative care you have doctors and nurses who are actually trained in palliative care, whereas with the LCP registrars who were not appropriately trained in this pathway applied the conditions without due process inadvertently. (Saunders) The idea is therefore that we all bring our perspective and collect experiences from our countries and there are some funds available (although Erasmus is in itself limited), to pay for someone to carry out some statistical or qualitative research in these areas.
The first stage will thus be a collection of information, carrying out of surveys and a meeting of minds. The path proposed is purposely flexible so that the collective input can be altered as necessary.
The second stage will be to bring together the common moral rules in the various countries and cultures that we manage to study. (Perhaps in the future the study could be extended on a more global perspective – but this certainly is a good start and we are not limiting ourselves to Europe). Whilst preliminary reading shows that moral guidelines are quite uniform, there is perhaps a lack of legal frameworks and the concern is that people feel more secure under a legal framework rather than knowing moral guidelines appropriately. Although it is premature to state this, it is perhaps a reflection of modern society which has to be addressed. This second stage thus will develop:
It should be emphasised here that a curriculum is not merely a syllabus of topics but includes modes of delivery, assessment, location etc. Therefore whilst on-site workshops and focus groups may be appropriate for health professionals, an internet portal or the use of community and government services may be more useful to educate the general public.
The third stages will be implementation. For this we have the summer schools. The summer school are held every year as this will be a learning experience, collecting and publishing feedback from the participants. It should therefore be appreciated that there is inevitably overlap between the three stages (or phases).
There may be no clear distinction where one phase begins and the other starts. Rather they are three ‘waves’ which will interact. However it should be understood that a proper curriculum cannot be developed solely from philosophical reflection alone, no matter how appropriate this is, but should be based on the studies we will carry out in order to show the people participating in the schools that homework has been done to understand the problem formally.
From the partners end one hopes to work on two levels – locally and internationally. For example in Malta there a number of experts (from palliative care, law, theology, culture, geriatrics) who have voluntarily accepted to participate on local studies and publications. Some of these are of course part of the team of experts to join in the international debate.
However the curriculum, whilst flexible to adapt in different countries should ideally be one document which will be given to be published and disseminated by an international organizing. We will try to establish contacts with organisations, perhaps through other projects (the COST Disaster Bioethics have a publication to be used as a text and to be published by the WHO). This is ambitious but possible and it will be futile not to attempt to do so.
The local team, who are all experts in the field as well are:
Project EndCare is being run under the aegis of the Bioethics Research Programme, co-ordinated by Professor Pierre Mallia and hosted by the Faculty of Medicine and Surgery of the University of Malta. Professor Pierre Mallia, M.D., Ph.D. is the contact person appointed to co-ordinate project EndCare on behalf of the University of Malta, which is the lead partner. Professor Mallia heads both the international research team and the management team assigned to the project. He is Professor of Family Medicine and Patients' Rights at the University of Malta and has been the co-ordinator of the Bioethics Research Programme at the Faculty of Medicine & Surgery since 2008.
The Bioethics Research Programme promotes the study, research and public awareness of bioethical issues. It provides practical ethical guidelines to the medical and research community through courses and seminars for medical undergraduates and health care professionals as well as for the legal profession. Professor Mallia's department also runs a Masters course in clinical ethics within a European framework.
The aims of the bioethics research programme are to: