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 internationally.¹⁰¹

Hungarian Hospice Foundation

The Hungarian Hospice Foundation was formally established on 29 April 1991 by a group of seven founder members¹⁰² - although at this stage it was more to do with ideas than a building. The prime movers included Dr Alaine Polcz and Dr Katalin Muszbek – who together sought a broader-based treatment of patients, coupled with better communication and the clarification of patient rights.¹⁰³ A major project of the Hungarian Hospice Foundation was to acquire and equip Hungary’s first free-standing hospice or ‘hospice house’. Premises that once housed a kindergarten were obtained in a quiet part of the city within District 3. Once established, the pressing task of the hospice was to make the public aware of its provision for dying patients and to begin to change attitudes. While palliative care attracted widespread philosophical support and generated a lively ethical debate, there was general nervousness when it came to action.¹⁰⁴

The new millennium brought far-reaching changes in the life of the Foundation. In 2001 the Hungarian Hospice Foundation was selected from 48,000 NGOs in Hungary to be awarded the ‘NGO of the Year’ Prize of the Non-profit Information and Training Centre (NIOK). After ten years of struggle, in May 2002 the first wing of the Budapest Hospice Home was opened, which was only made possible with substantial public support. The Foundation sought to establish a multi-source income structure to secure funding for its extensive operations, and to ensure that the necessary laws relating to hospice were created and that the state started subsidizing this segment of the health service.

In 2002, the Foundation launched a multi-phase programme to rehabilitate patients, to look after seriously ill people and to support the bereaved. The services of the Psychosocial Support Programme are not restricted to the terminal phase, but are available for cancer patients and their relatives from the moment the illness is diagnosed. In 2003, under a two-year psycho-social model project supported by the Bristol Myers Squibb Foundation, the Foundation had a unique opportunity to significantly widen the capacity of the service to support cancer patients and their families: the Multi-Phase Psycho-Social Support for Cancer Patients and Family Members. The main goal of this project was to provide psychological support for cancer patients and their relatives at various levels free of charge. The Foundation sought to turn the project into a model for a nationwide program and to spread the conviction that psychological health and well-being is as important in coping with cancer as is medical treatment. The program sought to realize the goals at three levels.

The first part of the project was LifeLine, a toll-free helpline was the first step in providing assistance. On-duty volunteers directed the caller to the psycho-oncological ambulance that was available free of charge, where they were received by psychiatrists and psychologists.

The second part of the project involved bereavement support. A bereavement group was launched each year for those having lost their loved ones. These groups mainly included the relatives of deceased patients who had been cared for by the home care team. Members of the group were selected with the help of psychologists, psychiatrists, nurses and volunteers. In the course of setting up the group, the foundation sought to select individuals with a similar bereavement process. The group had between 10 and 12 members and was led by two trained bereavement counsellors. They worked with structural techniques along a planned scheme which was then flexibly adapted to the group’s needs. The aim of the group was to reduce the isolation of those in bereavement, to offer an opportunity to share the pain, to alleviate the burdens by getting to know the process itself, to provide practical support, to help recognize opportunities in experiences of others in a similar situation and to open perspectives towards new possibilities and new relationships.

The third part of the project was an assessment and research study conducted at five oncology departments in Hungary (Budapest, Debrecen, Kecskemét, Szeged, and Zalaegerszeg). The study sought to assess the psychological state of patients receiving oncology treatment, and it also included validation of assessment methods new in Hungary: A validation study of the Hungarian version of the Hospital Anxiety and Depression Scale (HADS) on a large cancer patient sample. The Hungarian Hospice Foundation commenced this research project in January 2004. In the first phase 130 non-terminal patients were studied. The goal was to establish their psychic condition, their degree of depression and anxiety, as well as to validate the HADS questionnaire and the so-called Distress Thermometer on a sample of cancer patients. Preliminary results showed that the problems of the sample were typically physical and emotional, and that the anxiety and depression of the patients were in the range of 5-6, on a scale of 21. Thanks to this research, it is now possible in Hungary for professionals in psycho-oncology to use these up-to-date tools for assessing patients’ status. Closely related to this study is a project by the International Psycho-Oncology Society (IPOS), under which an on-line curriculum is available for professionals working in cancer treatment as part of their daily routine. Their intention was to make them familiar with the most common psychological problems among cancer patients. The Hungarian version of this was completed with the work of the Hungarian Hospice Foundation.

Budapest Hospice House is considered to be the education and training centre for the whole of Budapest, organizing one week postgraduate courses for Eastern-European professionals (primarily for nurses, physicians, psychologists and physiotherapists) whose work is caring for incurable patients and who aim to develop hospice in their home countries. Theoretical lectures are complemented by intensive professional practice at the palliative unit of Budapest Hospice House. In September 2003, Budapest Hospice House hosted a national meeting of professionals, honoured by the presence of the President of the International Psycho-Oncology Society, Dr. Jimmie Holland. Participants included heads of professional committees and societies in oncology and psychiatry, university lecturers, the President of the Association of Hungarian Hospitals, and Hungarian practitioners of psycho-oncology. The short-term objective defined during the highly productive discussions was to work out the local standards of psycho-oncology. In October 2003 the Foundation organized a conference in Budapest, which was part of the Open Society Institute Public Health Seminars series. The aim of the conference was to further the integration of hospice care into the health services of Central and Eastern European countries. The participants were palliative treatment experts, decision makers in health security and government, local hospice leaders, and academics. Nineteen countries sent 72 delegates.

Also in 2003, with support from the Ministry of Interior, the Foundation started an experimental programme at the inpatient ward of the hospital of the Dózsa Avenue homeless shelter. A team of a nurse, physician, physiotherapist, psychologist and volunteer aide gave spiritual support to the patients and alleviated their symptoms. The programme was intended to become a model for a humane service rendered to homeless and incurable patients, one that ensured that the right to human dignity and hospice care, as outlined in the Health Act, are available for everyone.¹⁰⁵ The programme highlighted a number of problems associated with the provision of palliative care for the homeless: lack of volunteers; lack of family member support; lack of training and education for health professionals in this specific area; and late presentation and diagnosis.¹⁰⁶

In 2004, Budapest Hospice House was substantially redeveloped, and Katalin Muszbek recalls the difficulties relating to the opening of the new inpatient unit:

‘Well we had to think, when we started to reconstruct the building where can we put the inpatient unit, we had to consider that without national budget support, National Health Insurance support, we cannot open it. We can work in the home care system because we can reduce the number of the patients if we do not have enough money, but when we have an inpatient unit it’s a very money-consuming field, so we decided to reconstruct the building when we started our discussion with the National Health Fund…this new project was the nine-bed in patient unit and we had to apply for it, and we failed because this is the only hospice house in the country and it had only 10 beds and it was in the regulation by law that an independent hospital should have 20 beds so they refused it so it was a very big problem because it was one year that this house was empty.’¹⁰⁷

In 2005 the inpatient clinic was finally opened. Referrals sometimes come from physicians, but the main source of referral is self-referral (approximately 70%). This is due to the fact that many GPs tend not to recognise palliative care - GPs are often visited by hospice staff to actually encourage referral. In 2006, Budapest Hospice House had 160 inpatients with an average stay of approximately 20 days per patient (91% bed occupancy).¹⁰⁸

The spirituality room at Budapest Hospice House

The Hungarian Hospice Foundation established an integrative ISO Quality Assurance audit system in 2006. The issued certificate applies to the following activities: professional home care, home hospice care, inpatient care, mobile team service, education related to medical care, pain clinic, day centre and psycho-oncology service.¹⁰⁹

Mobile hospice team: Jewish Charity Hospital

In 2001, the Hungarian Jewish Social Support Foundation (HJSSF) established a mobile hospice team based in the Charity Hospital of ‘Mazsihisz’ – the Federation of the Hungarian Jewish Communities (the Jewish Charity Hospital). The hospice was supported by a grant to the American Jewish Joint Distribution Committee from the Government of Luxembourg as part of their contribution to the Nazi Persecutee Relief Fund.¹¹⁰

The Jewish Charity Hospital caters for the health care needs of elderly Jews. In addition to physical care, spiritual, social and psychological care assumes a high priority. Social support identifies a variety of personal, financial and administrative tasks that need to be undertaken with the patient. Psychological support takes the form of discussions regarding anxieties and expectations. At the end of its first year of operation, the mobile team at the Jewish Charity Hospital produced a booklet in both Hungarian and English, giving details of its origins, philosophy and activities.¹¹¹

The mobile hospice team – located within the hospital – is seen to present a number of advantages. In particular, patients are able to receive palliative care without delay, as soon as the need arises. Because patients remain in their usual environment, complications do not arise regarding the availability of beds or admission to special units. Cost effectiveness is thought to be high. However, much debate preceded the initiative. During a project interview, Dr Gyorgy Samuel (medical director) explained how in his opinion, hospice philosophy was ‘a human philosophy’ and not owned by any one group.¹¹² Before the hospice was established, a careful examination took place of Jewish beliefs surrounding death and dying. Eventually, supporters of the hospice prevailed.¹¹³ Dr Katalin Hegedus recalls:

‘The Hungarian Jewish Foundation came to this hospital and they spoke about the hospice movement, but the hospital refused it. And they refused it because the hospice philosophy is against Jewish spirituality, because the Jewish philosophy is for life and not for death. But we spoke about hospice philosophy: it’s not for death, it’s for life also, for quality of life, you know – and during 5 months the hospital refused the service and the money also. But this January the American leader and some leaders from Israel came to the hospital to speak with the Director, and the Director accepted the service.’¹¹⁴

Erzsebet (Elizabeth) Hospice Foundation, Miskolc.

The Erzsebet (Elizabeth) Hospice Foundation, as one of the pioneers of the Hungarian Hospice Association, began the homecare of terminally ill cancer patients in 1994. The Foundation contributed to the opening of the Erzsebet Hospice in 1995, which is integrated into the Semmelweis Hospital in Miskolc.¹¹⁵ The Foundation continuously assists the work of the hospice by obtaining medical and office equipment, as well as items to assist in the care and comfort of the patients. The winning of Dutch grant support in 1999 made it possible to create a day-care department. More volunteers are also getting involved in the work of patient care on a charitable basis.

So far, more than 1500 individuals – doctors, nurses, social workers, psychology and mental hygiene students, trainee priests and ministers – have participated in various training courses at the Training and Resource Centre for Palliative Care. Other hospice institutions, like the Jewish Charity Hospital hospice mobile team also send their members to Miskolc for training.¹¹⁶ The aim of these courses is partly to pass on professional knowledge, and partly to publicize the humane way of treating the dying. In recognition of its educational work, the Erzsebet Hospice Foundation won the title ‘Education and Training Centre’ from the Open Society Institute in 2000.

The professional work of the service is well-known even beyond the borders of Hungary. The Foundation’s doctor represents Hungary on the ECEPT Task Force as a professional rapporteur. The care team received the city of Miskolc’s ‘Nivo’ award in 1999, the certificate of recognition of the Minister of Health in 2000; and the head nurse received the Order of the Golden Cross of the Republic of Hungary in 2002. A significant part of home care activity takes place on a charitable basis and does not enjoy social security support. The foundation attempts to provide the material pre-requisites for its work through gifts, charity events and grants.