Hungary’s capital city, Budapest, has played a special role in the development of the Hungarian hospice movement. It was in Budapest that innovative pioneers were to be found at the end of the 1980s; a group that included the President of Hungary and other leading figures. A groundswell of interest arose that eventually led to the establishment of Hungary’s first hospice and the Hungarian Hospice Foundation. Meetings with ministers and government representatives ensured that in Hungary, hospice care became incorporated into the Hungarian National Health Service.

Palliative care in Hungary began with the collapse of the communist system. Prior to the political changes that began in 1989, issues dealing with death and dying were considered to be taboo.⁷⁰ The experiences of Alaine Polcz, one of the key figures in hospice development in Hungary, are noteworthy:

‘I worked for two decades on the department of paediatric oncology – leukaemia – and at that time leukaemia was doubtless considered as a terminal illness of swift course. We had immense losses. We tried to create more human and bearable conditions for the last days of the children. However, it was a very hard task – for everyone. I collected my experience about dying in the hospital and at home. I examined the various aspects of the issue and I wrote an article about it. I did not find a place to publish it. At long last, after months of hesitation, the periodical ‘Valosag’ published it. This publication was a battering ram – a pioneer work in Hungary.’⁷¹

As the 1980s drew to a close, two groups in Budapest, based at the National Institute of Oncology, began to collaborate and explore more holistic ways of dealing with patients.⁷² From this collaboration emerged the first Hungarian hospice, known as the Hungarian Hospice Foundation. Alaine Polcz figured prominently amongst the seven founder members.⁷³ Well known in Hungary, she was associated with the liberal branch of Hungarian politics and had married the acclaimed writer, Miklos Meszoly. As a friend of both George Soros and President Arpad Goncz, her contacts proved to be helpful in the establishment and development of hospice.

The Hungarian Hospice Foundation was formally established on 29 April 1991. The hospice addressed its activities at first to making the public aware of palliative care, and to begin to change attitudes.⁷⁴ The concept of hospice was completely unknown to the public, the approach to death and dying a taboo. Consequently the Hungarian Hospice Foundation’s main concern was to bring this new form of care for the dying into the public and enlist relevant social organisations for support.⁷⁵ Led by Dr Katalin Muszbek, its aims were stated as follows:

(i) Psychological and mental care for dying patients
(ii) Pain and symptom control
(iii) Public health and social services care
(iv) Help and counselling for family members
(v) Bereavement service for family members
(vi) Establishing hospice houses and hospice care teams
(vii) Organising a hospice education system

The service, which initially meant home care given by a few volunteers, is now provided by a variety of organizations, in various forms (inpatient unit, hospice home care, hospital mobile team, day care centre, pain outpatient clinic, psycho-oncological outpatient clinic, telephone mental health service, bereavement service, etc.). Hospice teams began to form in 1994 with the help of the Soros Foundation.⁷⁶

In 1993, hospice care was incorporated into the Hungarian National Health Service and included in subsequent development plans. Entry criteria were defined and invitations issued to services offering hospice/palliative care who intended to be integrated into the service and subsidised by it.

In 1995, the Hungarian Hospice-Palliative Care Association was established by the National Association of Cancer Patients and 19 hospice organisations, and invited applications from organisations and individuals who provided or wish to support palliative care. The Association is heavily involved in education, alongside Semmelweis University of Medicine and the Institution for Basic and Continuing Education of Health Workers. It also organises annual conferences, disseminates information from EAPC, and publishes a quarterly newsletter.⁷⁷

In 1997, Hungarian Health Law declared the human right of palliative care, and defined hospice care. The legal framework was made to conform to European standards and WHO recommendations when a new act on health services was created, which dedicated an entire chapter to patient rights, and a section to the definition of hospice treatment.⁷⁸ When the new Health Care Act of 1997 was being drafted, a 3-person committee made up of Bela Blasszauer, Ference Falus and Katalin Hegedus produced a document dealing with the care of the dying. This document has become an important reference base; a summary was incorporated into the Health Care Act to outline the principles of hospice care. Yet Katalin Muszbek recalls the difficulties in the legislation:

‘This Act involved the topic of hospice, so there is a paragraph, an Act, a part of an Act, I don’t know this is a paragraph on what does hospice mean? Everybody has the right in the terminal phase to have hospice care, the family members can stay with the patients in the hospice, etc, so this is very modern, and we were very happy in ’97 that we had this Act and we thought that it’s working. But this Act in Hungary in the Hungarian regulation or Hungarian legislation, the Act itself is not working, only if it has a special regulation. And this was missing, so it was not a hospice code. It doesn’t mean that when you made a hospice activity it was not registered as a hospice activity, it was registered as a normal home care service or a chronic bed activity in a hospital, because we had a code for those two, but we didn’t have a special code, a special regulation, for hospice…in the Act there is hospice but in practice it was not hospice care.’⁷⁹

National Guidelines and standards for palliative care were established by the Hungarian Hospice Palliative Association and accepted by the Ministry of Health in 2002, and a detailed palliative care guideline was launched that dealt not only with professional but also constitutional and financial aspects of palliative care.⁸⁰ These guidelines – approved by the Health Department – were sent to all Hungarian hospitals.⁸¹

In 2003, there was a media campaign to establish human rights and patients rights organisations that initiated a parliamentary examination.⁸² The Council of Europe report on palliative care (Recommendation Rec (2003) 24 of the Committee of Ministers to member states on the organisation of palliative care) was translated and edited by the Hungarian Hospice Palliative Association in October 2004 with the participation of many journalists.⁸³ When interviewed in 2002, Dr Katalin Muszbek stressed the need for a Ministerial decree relating to the provision of hospice and palliative care in Hungary:

‘I would like a Ministerial Order…a Ministerial Decree Order is very important for the financial system; it’s the most important.’⁸⁴

The lack of a Ministerial Decree to regulate the financing of palliative care began to affect the availability of funding from other sources, as Katalin Muszbek recalls:

‘One of the main barriers to the development of palliative care in Hungary was the lack of the decrees or regulations, the problem was that palliative care is not recognised in Hungary…we were told that if we do not have any regulation in palliative care then we can not go on many of the Hungarian groups. The hospice groups are based in the civil background, they are NGO’s or some of them are working in a hospital and the hospital manages the in-patient unit, but in general there is a foundation behind that which they built to raise money, or some charity managing the differences between the budget of the government and the real expenses.’⁸⁵

By 2004, changes to Ministry of Health personnel and continuous lobbying from pioneers such as Katalin Hegedus and Katalin Muszbek had introduced fresh optimism about the possibility of a Ministerial Decree:

‘…in the last year that there were some political changes and some personnel changes in the different Ministries, in the different authorities. One was that a psychiatrist, who is a psychoanalyst, and a very socially sensitised person, or a socially skilled person, became the Vice-Minister in the Ministry. The second one is that the Director of the National Health Insurance Fund became a person who was interested in creating or setting up a hospice. So these two key persons were the target of our lobby in the last two years…So we tried to approach first the Minister, the new Minister, and the different levels of the Ministry, and we got the promise that they are really willing to help us. And we prepared the, not only the Foundation, but the ... Association prepared material regarding what would we like to have in the regulations…So we prepared this, and then we formed, we lobbied it at this Minister, the two Vice-Ministers, and it seemed to be that they had open minds, they were open-minded and they encouraged us to do this.’⁸⁶

Eventually, after many years of lobbying, publicity and educational work, numerous advertising campaigns and the organisation of charity events to spread the hospice philosophy, hospice and palliative care became an integral part of the Hungarian health care system:⁸⁷

‘…we were working at it, the Board of the Hospice Association, Palliative Association, but practically Katalin (Hegedus) and me were in the Ministry at the final preparation of this regulation, and we were there almost a day. And we finished it at about six o’clock and we...I begin to cry now to...we’ve got it!...so we embraced each other and we began to cry, because that was a historical point that we could not believe that after 13 years it’s done, it is there, it’s on the paper that there is a hospice regulation, there is a hospice code that means that it will be in the Hungarian daily practice.’⁸⁸

In April 2004 the National Health Insurance Fund and the Open Society Institute organized a Palliative Care Policy Development Conference to set up a National Strategic Plan for Palliative Care. The Hungarian Hospice Foundation, University Clinics and professional medical societies were also invited to this conference in addition to policy makers, hospice and patients' right organisations. Participants accepted recommendations to develop policy, education and training initiatives, the final construction of financing, as well as a national strategy which relied on professional consensus. Recommendations were published in a special medical journal in November 2004. The conference recommended that by 2009, at least half of those requiring help should get it with 70% of all costs covered by the national insurance⁸⁹ Katalin Muszbek recalls the pivotal role that the Open Society Institute played during this time:

‘Without their activity the whole region would be much, much poorer, and what I could see when I follow from 2000 to 2004 the activities of the countries in the region, I could see in 2002 a huge development and in 2003 a much, much bigger development in this country, via the support of the Open Society Institute, because they organise meetings, they visit personally the countries and they organise some local meetings in the country. For example they realised in Hungary that the biggest need is now the policy; in another country it is how to set up the first step, home care; the third country how to [improve] education, etc.’⁹⁰

The National Health Care Insurance Fund started a two-year financing pilot programme for hospice/palliative services in May 2004. The providers had to meet special requirements as elaborated in professional and financial plans, references, infrastructural, personal and material conditions and quality management. The main elements of the monitoring were the professional and operational indicator-system, bi-annual reports and process control. The NHIF stipulated the integrated form of provision: in-patient and home care services needed to operate in conjunction with each other.⁹¹

In 2004, the Health Ministry launched the Ministerial decree on the hospice minimum condition which gave official licences and special financing that took the whole hospice team into account. The ministerial decree for hospice minimum standards was passed providing: a definition of palliative care; description of forms of care (home care, inpatient unit, mobile team); objective and personal conditions of operation. The decree on the minimum requirements for hospice care provided for greater professional control and increased contribution from the state.⁹² A lot of the existing inpatient and home hospice services applied, and also some ‘normal’ hospital departments and home care services, who fulfilled the application’s requirements (for example, they had nurses trained in hospice care or the service had a quality control system). Some of the other old hospices did not apply but continued their hospice work on the basis of other support. As a result, in addition to the existing hospice inpatient centres, some other hospitals that were not previously classed as hospices received financial support.⁹³ Katalin Muszbek recalls the importance of clearly defining a ‘hospice service’:

‘…the key element of this project is that, if a hospital opens a hospice inpatient unit, the minimum beds, the number of beds are 10. When they open it should be combined with a home care team …so the first and the very important thing is that it is based on the minimum standards, so if a group is applying to get this money, this reimbursement, and they are not the minimum standards, they are asking just because this is good money, better money than regular, they cannot get it. It’s very important, because when we extend an activity, you know, all those people who see the money in the new project are applying for it, and we would like to keep the essence of hospice/palliative care…Because now we know what it means or it is written; what does it mean hospice and palliative care, what is its meaning, what kind of personal needs or minimal standards has it or any other kind of minimum standards are written in it?…And er that was very important because otherwise you know it was a higher amount of support from the National Health Insurance Fund and if we do not have these minimum standards and the groups are unable, the palliative care groups are unable to complete them then it became a business and not palliative care and that was one of the reasons why we strongly fought for only those groups to be supported financially that complete the minimum standards.’⁹⁴

Katalin Hegedus elaborates further on the problem of definition:

‘Yes but the main problem for me for example, because in I am in the university and this university has a lot of clinics you know and opportunity we don’t have palliative care in the university clinics and now there is a project in my university to create a hospice in the university but the head nurse of the university wants something not the professors and dean and physicians, oncological people, but if the head nurse wants to organise something its chronic, it will be a chronic department and not a real hospice you know, and for the other chronic wards and chronic departments it is the same problem because they don’t know exactly what are the differences, what are the differences between chronic and palliative care.’⁹⁵

The concept of palliative care as a basic human right was discussed during negotiations leading to the 2004 National Health Insurance Fund/Ministry of Health decision that created the legal and financial conditions for hospice and palliative care to become an integral part of the Hungarian health care system. Within this context, Katalin Muszbek suggests that the ministerial decree has improved access to palliative care.⁹⁶

At a board meeting of the Hungarian Hospice Palliative Association (HHPA) on 13th March 2007, it was revealed that the National Health Insurance Fund contract ended on March 31st 2007, but also that the contract was to be reviewed or extended on the production of a new tender that detailed revised hospice funding provision. Katalin Hegedus suggests:

‘This decree is very important for us because without this decree it is impossible to develop the hospices in Hungary, and by this decree we could receive financial support from the national health insurance fund - without this it is impossible, and it was started in 2004 and it is a model programme for two years but for palliative care services who got this financial support it is very important that, after the 2 year programme they can continue this programme in the hospital or in the home care system, and I think that is the main aim of the municipal decree and the national health support.’⁹⁷

Some hospitals will continue to receive hospice care financing, yet others will be terminated because although they began by providing hospice care, they eventually provided chronic care only and therefore do not now fulfil the relevant criteria. By contrast, other hospitals had undergone a complete reorganisation in order to satisfy the hospice funding criteria. The confusion surrounding the definition of a ‘hospice’ was of particular concern to the HPPA board, who felt that some organisations that did not really provide hospice care could receive NHIF funding, whilst ‘genuine’ hospices may face closure. A good example of the ethical dilemmas involved in the funding process was the application from a pulmonology institute to set up a 24-bed ‘palliative care’ unit – it was revealed that the person responsible for submitting the application was pro-euthanasia. It was stressed how important it was that such initiatives do not become part of the hospice and palliative care framework in Hungary. Within this context, Katalin Hegedus and Katalin Muszbek had made recommendations on the financing of hospice and palliative care to the supervisory board of the National Authority of Public Health, the Ministry of Health, the National Health Insurance Fund, the Oncology Professional Supervisory Board, and hospice and hospital directors throughout Hungary.⁹⁸ The NHIF have confirmed that they are to continue their financial support until at least 31st December 2008.

In 2007, quality control of hospice physician's work has been undertaken by the public health authority.⁹⁹ Professional guidelines have been published regarding the palliative care of terminally ill patients with malignant tumours. These standards address the concept and regulation of palliative care, its accessibility on the part of patients and issues of quality. Also stated are the tasks and responsibilities of team members, together with education and training requirements. Standards of documentation, cost analysis and research are also outlined.

Hungarian Hospice Palliative Association Board Meeting (March 13th 2007)

At a board meeting of the Hungarian Hospice Palliative Association (HHPA) on 13th March 2007, it was revealed that the new fee payable under the recent changes to the Hungarian health care system for visiting a GP is not applicable to cancer patients. However, a hospice consultation fee is payable up to a maximum of 20 days per year, whereby the hospice pays the state in advance, and the patient reimburses the hospice accordingly. No reimbursement is required if the patient dies within the 20 day period. There are no costs to home care patients. In reality this is often avoided by patients being transferred from one hospice/hospital to another. Indeed, in practice, only one person to date had been reported as having paid the fee. The HPPA board felt that it was a question of how the law was interpreted, but expressed some concern that this rule may inevitably result in reduced income for hospices and other palliative care institutions.¹⁰⁰