After the fall of the Ceaucescu regime, activists working independently in the Romanian cities of Cernavoda, Bucharest and Brasov began to give attention to the establishment of palliative care services. In December 1990, the Reverend John Walmsley (from Glasgow) visited Romania with a few volunteers. Confronted by the situation experienced by children, he founded the charity Romanian Children’s Aid, later known as Children in Distress. On 15 March 1992, the charity opened Romania’s founding service: St Laurence’s Hospice, Cernavoda - a specialist paediatric unit for children with AIDS. Other units were to follow in Bucharest and Curtea de Arges. The aims of the charity are stated as follows:

‘Through our specialised facilities we aim to bring quality of life and dignity in death to children that would otherwise have neither. We are working with our Romanian partners to develop their skills in palliative medical and nursing care and to establish centres of excellence, which can serve as models for other Romanian institutions.’⁴⁵

The Romanian Association for the Development of Palliative Care (ARDIP) was founded by physicians Maria Lungu and Constantin Bogdan on 5 January 1992 at the Berceni Hospital, Bucharest (now St Luke’s). Within 3 months, the Association had 24 members. In 1999, Dr Lungu and Dr Bogdan founded the Romanian Society for Palliatology and Thanatology (SRPT). A bulletin is published quarterly (News in Palliative Medicine) and a review annually (Palliative Medicine). Financial constraints and a limited network of international support meant that the Bucharest initiatives were limited however, leaving the major impetus for palliative care centred on Brasov and the work of Graham Perolls.

As a young man, Graham Perolls visited Romania in 1975 and formed longstanding friendships there. In 1985, Graham had established a hospice in Dartford named The Ellenor Foundation, in memory of his parents, Ellen and Norman Perolls. However, it was shortly after the revolution in 1990, during visits to a Romanian orphanage and a cancer hospital that he felt the need to help the Romanian people to develop a hospice service:

‘And then on my second visit, I went back in March, that was my first visit to the cancer hospital and again I couldn’t believe really what I was seeing, people, you know, dying in horrific pain and just left on their own really. I realised that most people were sent home as soon as they were diagnosed with a terminal illness so, you know, there were very few actually who died in the hospital, not just those who maybe didn’t have anywhere to go, or they just couldn’t get rid of them, but it was a fairly horrendous scene to go round the cancer wards and, you know, you just didn’t really know where to start.’⁴⁶

Graham Perolls responded to requests for help by drawing on his experience of hospice and the willingness of the Ellenor Foundation Trustees to support the establishment of a hospice in Romania:

‘Well initially after I’d been to Brasov on a few visits in 1990 and I had the idea perhaps we could do something to help, obviously, you know, to do anything like that you would mean money and so really my first task was to persuade our Trustees at the Eleanor Foundation to launch an appeal to raise money for Romania.’⁴⁷

In April 1992, Hospice Casa Sperantei (‘Home of Hope’) came into being as a Romanian/English charity with ten founder members from each country. A home care team was established in Brasov with financial and educational support provided by The Ellenor Foundation. Gabriela Baila recalls the early days:

‘When I started I had 40 patients in my caseload; yes, 40 patients. We didn’t have an office. We would start at 9 o’ clock in the morning and we’d finish at 6.00 in the afternoon. This is the way we started and we worked for one year, probably, and then we started to set boundaries, because, of course, you have to do this in time.’⁴⁸

Palliative care education has featured prominently in Romania. After extensive fund-raising, land was purchased in 1994 for an education unit in Brasov, and The Princess Diana Hospice Education Centre was officially opened in 1997. In extensive buildings, the centre provides well-equipped conference and group facilities for 60 persons (22 residential). A well-equipped library houses a wide range of monographs, journals and resources.

Postgraduate palliative care courses are offered for doctors, nurses and pharmacists. A diploma course of ten weeks’ duration is offered for GPs and nurses. When the centre opened, PHARE, (a European Union initiative that supports disadvantaged groups in Eastern Europe) agreed to fund 75% of the courses for 2 years.⁴⁹ The centre has now achieved international recognition, addressing the training needs of health professionals within Romania and south-eastern Europe.

Between 1998 and 2002, four national conferences were held in Brasov, attracting over 400 delegates in total. By 2002, over 1,120 Romanian health professionals had attended courses. The First Balkan Conference, organised by the National Association for Palliative Care, was held in 2001, attracting 68 participants from countries that included Albania, Macedonia, Moldova, the Ukraine and Yugoslavia. Delegates evaluated the conference as being ‘excellent’ (33%) or ‘very good’ (66%).⁵⁰ Daniela Mosoiu describes the series of events that resulted in the First Balkan Conference being staged:

‘And when we started in the region, we started with training people from Moldova, which is the country neighbour with Romania, and we share the same language, so that made things even easier because the courses could go on in Romanian. And then we had this Balkan conference because there was interest in the region and we thought it is good opportunity to meet and to see what are the problems and if there can be some network developed, if that would help, if we can…help people from other places train with us…’⁵¹

In addition to these conferences, there has been a National Lobby Conference for Palliative Care held at the Study Center in Palliative Medicine in Brasov in 1999 and 2001. Following the 1999 conference, a common curriculum was established for nursing and medical schools and also palliative care standards for service and education providers.⁵² In 2004, a conference entitled the International Congress on Palliative Care: Experiences and Perspectives (29th September – 2nd October 2004) was organised by the Romanian-Dutch project on Palliative Care (PACARO); Romanian Society of Palliatology and Thanatology (SRPT); Institute for Rehabilitation Research (iRv); University of Maastricht.

Within Romania, Daniela Mosoiu has been appointed national co-ordinator for palliative care education and has produced a palliative care curriculum endorsed by the Ministry of Health. The University of Greenwich (UK) initially provided accreditation but the courses have since been accredited by the Romanian National Centres for Postgraduate Study for Doctors, Nurses and Pharmacists. In 2001, a National Program of Palliative Care was proposed following the Integration of Palliative Care Services in Public Health System conference in Brasov. The program was coordinated by Hospice Casa Sperantei, Institute of Management of Health Services, Center for Palliative Medicine Research, and the Health and Family Ministry.⁵³

In 2002, national standards in palliative care were developed in a partnership project between the Romanian Association for Palliative Care and the National Hospice and Palliative Care Organization in the USA. These standards were developed in an attempt to maintain the quality of care by providing some basic requirements, and also to serve as an evaluation tool in the process of contracting funds. These standards are now part of a Ministry of Health White Paper that will define the palliative care services for Romania and present the strategy for development of services at a national level.⁵⁴ This document is the first attempt to develop clear standards for palliative care services in Romania. The standards can be seen as a set of criteria to be accomplished by any potential hospice/palliative care service, and could also be used by the health authorities and financers in order to evaluate the existing and emerging palliative care services in the country. The team that contributed to the development and publishing of these standards did not attempt to define them as a level to aspire to, but simply as a core of basic requirements to ensure the quality of palliative care services provided for incurable patients in advanced and terminal stages of their disease. The standards for palliative care are part of a RASP (Romanian-American Sustainable Partnership) program financed by USAID World Learning.⁵⁵

In 2002, the Romanian-Dutch medical program PACARO was developed by Wim van den Heuvel (Professor of Rehabilitation Medicine at the University of Maastricht) and Luminita Dumitrescu (paediatrician/family physician). The project was supported by Maastricht University and the Institute of Rehabilitation Research, Hoensbroek, The Netherlands, in cooperation with the Romanian Society of Palliatology and Thanatology (SRPT); National Society of General Practitioner/Family Medicine (SNMGR) and the Romanian Association of Integrated Care (RainCare Foundation). The program was developed between February 2002 and September 2004 and had the financial support of the Dutch Foreign Ministry. The overall objective of PACARO was to stimulate and to demonstrate the possibilities for palliative care in Romania, to develop models for such care, to establish a network of trained experts, to share knowledge and experience with other interested groups, and to guarantee the quality of palliative care and its cost effectiveness.⁵⁶ Wim van den Heuvel describes how the PACARO project developed:

‘I visited Romania several times and one time…I was thinking we should develop a project on palliative care and since at the same time the Association of General Practitioners was going very strongly in Romania, I discussed with the Association, ok how would you go in to, to do if I think about palliative care and then we developed the idea let’s try to make something like palliative care teams at home where the GP, the support of an oncologist or another specialist and with nurses and with social workers who’d work together, try to deliver palliative care at home as far as possible and so I made a proposal with that idea to the Dutch Minister of Foreign Affairs…so that’s how we started.’⁵⁷

Access to information has become a priority in Romania. A help-line has been established for patients and caregivers. A handbook - The ABC of Palliative Medicine written by Daniela Mosoiu - has been published and a series of booklets produced for patients and carers. Under the heading ‘What do we need to know about’ – separate editions have been published entitled: Morphine, Syringe Driver, Dressings, Lymphoedema, Pressure Sores, Urinary Problems, Feeding the Patient, The Adolescent with a Terminal Illness, The Child and the Terminally Ill Parent, The Family of a Terminally Ill Child, and Grief. The National Commission for Palliative Care was appointed in the Ministry of Health in 2004, and a draft regulation concerning palliative care services was produced (although by 2006 the regulation has yet to be adopted).

Reporting in the EAPC Palliative Care Euro Barometer (2005), Romanian health professionals noted that there had been a number of significant factors in the development of palliative care including:

‘Partnerships and constant financial support from outside the country, [which] have helped to develop the initial services that have now brought the issue of palliative care onto the agenda of policy makers. National palliative care standards for home care services have been produced in partnership with NHPCO. Laws have been introduced regarding patients’ rights, hospital law, and financing arrangements in relation to palliative care. These policy changes have created the right environment for the future financing and development of palliative care services.’⁵⁸

In 2005, The National Association for Palliative Care marked the publication of the Council of Europe (2003) report on palliative care (Recommendation 24 of the Committee of Ministers to member states on the organisation of palliative care) by translating it and hosting an official launch. The National Commission for Palliative Care did not participate in any way in the Council of Europe discussions about euthanasia (the Marty Report). At the current time, there are no initiatives in Romania that seek the legalisation of euthanasia or assisted suicide.⁵⁹