Hospice success stories in the form of palliative care ‘beacons’ are outstanding examples of hospice/palliative care in a particular region. These palliative care services provide illumination in the form of education and training; they are also recognised from afar for their innovation, enterprise and quality. Palliative care ‘beacons’ serve as an example and source of inspiration to others, indicating what can be achieved in difficult circumstances, when the correct ingredients are present for successful innovation, service provision and sustained development. Each palliative care ‘beacon’ faces both common and disparate challenges, and in responding to those challenges, has contributed to the development of palliative care regionally, nationally and internationally⁶⁰. Palliative care ‘beacons’ in Romania are Hospice Casa Sperantei (Brasov) and Emanuel Hospice (Oradea).

Hospice Casa Sperantei, Brasov

The multi-disciplinary palliative care team, led by medical director Dr Daniela Mosoiu, offers free specialist medical and nursing care, and psycho-social/spiritual support for adults and children with life limiting and terminal illness including cancer and AIDS. Founded in 1992 with the support of international donations, this NGO started as a hospice home care service for adults. Mariana Pernea started work for the home care team at Hospice Casa Sperantei in the spring of 1997, and recalls some of the difficulties:

‘At that time it was a small team. In fact it was Daniela [Mosoiu] as a doctor, and there were four nurses I think at that time, and they were struggling with a lot of, with a big number of patients, trying to do something for them.’⁶¹

From 1992-2000 the hospice cared for an average of 185 patients per year. A paediatric service opened in 1996 and new premises were sought to accommodate the expanding services. Around 1,000 square metres of land adjoining the Marzescu hospital were donated by the city council in 1999.

Graham Perolls, President of Hospice Casa Sperantei, outlines the ethos of the organisation:

‘Hospice Casa Sperantei works with the medical and nursing staff employed in the community and hospitals to facilitate the provision of hospice care for the people of Brasov. The underlying philosophy of the organisation is based on Christian principles. Importance is attached to spiritual and emotional wellbeing of all patients and their families in a context which respects the individual’s beliefs and practices.’⁶²

In June 2002, Hospice Casa Sperantei opened a new purpose built, free standing inpatient unit, funded by national and international donors. The new premises form the base for a range of services that include adult and paediatric inpatient, home care, day care and bereavement support, together with specialist support for local hospitals, and an outpatient clinic available for patients living within a 25 miles radius of Brasov. Support is also offered free of charge to patients’ families. Daniela Mosoiu explains the clinical importance of the inpatient unit to the development of palliative care:

‘We thought …we need to show how this is done in practice and it’s very difficult to do this in a home care team, so we would need a unit to be a model where they can see it.’⁶³

In September 2003, Melina Dumitrescu, founding member of Hospice Casa Sperantei and administrator since 1996, received the Children’s Hospice International (CHI), Sister Frances Dominica Award for Innovative Program Development, for her role in the development and building of the free standing hospice, which includes the children’s unit⁶⁴. As she notes:

‘We developed from a small team of nearly 20 people to what we have now; four services under the same roof which are home-care, in-patient units for adults and children, day-centres for adults and children and out-patient clinic, with a staff of more than 90 people so that sort of training wasn’t easy.’⁶⁵

In 2004, a day care unit was set up at Hospice Casa Sperantei with the support of St Ann’s Hospice, Manchester⁶⁶. Dot Entwistle, Day Therapy Team Leader at St Ann's Hospice, visited Casa Sperantei in September 2002 to help initiate the development of the unit. In June 2004, Carmen Venz, the Day Care Sister at Casa Sperantei, visited St Ann's Hospice for a week to observe clinical practice in the Day Therapy Unit and visit local health professionals. The visit was funded by donations from day care leaders in the UK.

Hospice Casa Sperantei is a unique service that has made remarkable progress in a short space of time. Since becoming established as a small home care team in 1992, the hospice has developed into a large organization occupying free-standing premises together with a regional educational centre with residential facilities. Its achievements have been assisted in no small way by the long-standing partnership with the Ellenor Foundation. Casa Sperantei has been described as a British-style hospice that has adapted to the cultural context and legal requirements of Romania. Despite the harsh economic climate, the activity of the hospice suggests an impact has been made at a number of levels: locally with the people of Brasov and the surrounding district; nationally, with the Ministry of Health, the Ministry of Education and the National House of Insurance; and internationally, as a provider of palliative care education throughout the region.⁶⁷

Emanuel Hospice, Oradea

Founded in 1996 by Fundatia CASA⁶⁸, Emanuel Hospice is a Christian NGO providing free specialist palliative home care in Oradea for adults and children with a variety of life-threatening and life-limiting conditions including cancer, neurological disease, and AIDS. The interdisciplinary team (physicians, nurses, social workers and an administrator) provide the only specialist home care in the district offering pain and symptom management, respite care, an emergency on-call service, and psycho-social/spiritual support for patients and their families.

In addition to medical and nursing care, the hospice team provides all necessary nursing supplies and equipment, helps with completing official documentation, and provides free transport between hospital and home. The hospice also runs training courses for professionals and volunteers, and the team offers bereavement support where needed. Patients or their families can self-refer or be referred by hospital consultants, nurses, or family doctors⁶⁹. On 8th October 2005, World Hospice and Palliative Care Day, Emanuel Hospice opened new administrative offices, made possible by charitable national and international donations.

The ‘Beacon Project’

In 2001, the Open Society Institute commissioned an important research project entitled Transitions in End of Life Care (Hospice and related developments throughout Eastern Europe and Central Asia). The project was undertaken by Professor David Clark and Rev. Dr Michael Wright. In its conclusion, the report identified Hospice Casa Sperantei, Brasov as a ‘Palliative Care Beacon’ in South Eastern Europe, and recommended that the hospice should further develop its regional role in the Balkans. This created the idea for the ‘Beacon Project’ which was launched in May 2003 by Graham Perolls, in response to this recommendation.⁷⁰

The ‘Beacon Project’ identified the need to establish regional training centres in five key cities within Romania, building on the excellent work at Hospice Casa Sperantei in Brasov and with the intention of making that standard of care available throughout the rest of the country and the surrounding Balkan region⁷¹. Romanian initiatives included: establishing a National Institute for Hospice and Palliative Care in Bucharest; Casa Albert, a children’s hospice in the Bacau region; and Something for Romania, supporting the development of hospice services in Cluj.

The ‘Beacon Project’ has also established partnerships with several other projects throughout South Eastern Europe and has been able to advise governments, health boards and other organisations on the development of hospice services; for example, providing hospital-based care and palliative care education at BELhospice, Belgrade, Serbia. The ‘Beacon Project’ also provides assistance, advice, and training in Albania, Bulgaria, Republic of Macedonia, and the Republic of Moldova⁷². Daniela Mosoiu describes how the project developed:

‘…I think the idea was really to use the knowledge that we – not just the – the experiences that we have acquired during these ten years, or maybe more now, to help develop other services in the region, and in Romania as well…and also now...from Moldavia, Bulgaria, Albania, Macedonia, Serbia – so, you know, the Balkan area, and also to train them, but also to try to see what, you know, how they can be supported in their work, and how much can we do, because, you know, you cannot meet the needs of – all the needs, you know, that are necessary in the region.’⁷³

In 2005, thanks to a three-year grant from the pharmaceutical company GlaxoSmithKline, the ‘Beacon Project’ was extended to palliative care for children in Romania and South Eastern Europe. This project is called the ‘Beacon of Hope Project for Children’.⁷⁴