In a paper on legal and ethical elements of Hospice-Palliative Services in Hungary, Katalin Hegedus reports on the incorporation of patients’ rights into Health Care legislation, and discusses the situation of those suffering from serious illnesses or dying.¹¹⁹

Incorporating such rights into the Health Care Act of 1997 followed strengthening of the democratic legal system, and a re-examination of the relationship between patients and doctors. Professionals stressed the need to include palliative care in the new legislation. A number of rights are detailed: the right to receive medical care, to human dignity, to personal contacts, to be informed and have self-determination, to refuse treatment, to be informed of the content of health documentation, and the right to professional secrecy. Significant areas are those dealing with information and self-determination; building on previous work in the area of informed consent. The right to refuse treatment in some circumstances is an innovation of the new Act, for patients who are able to do this. The Act also allows for “Living Wills”. The earlier Health Care Act of 1973 had made it difficult to discontinue treatment, and in the early 1990s doctors were not always able to differentiate between the new concept of palliative care and passive euthanasia although the 1987 proposed Code of Ethics in Medicine recognised the suffering caused by unnecessary treatment. In 1993, a directive from the Ethical College of the Hungarian Chamber of Physicians disapproved of all forms of euthanasia. Their Code of Ethics passed in 1998 makes a clear distinction between euthanasia and palliative medicine.¹²⁰ Katalin Hegedus explains the situation:

‘In the health care act about euthanasia, passive euthanasia is not forbidden and we have the living will in our health care system but the problem is normally the patients don’t know about this opportunity, it is in the law but few people know about it. And there is not an obligation for the physician to tell this possibility to the patient…and active euthanasia is not possible you know but sometimes there are debates abut it.’¹²¹

Hungary has not participated in any way in the Council of Europe discussions about euthanasia (the Marty Report). There are no initiatives in Hungary that seek the legalisation of euthanasia or assisted suicide.¹²²

At Budapest Hospice House, a contract must to be signed by family member to ensure they understand that the hospice is not a place of ‘cure’ for their loved one. In Hungary, still often just ‘partial truth’ is told; relatives of a terminally ill person are always told of the patient’s prognosis – the patient is told only if they express a wish to know.¹²³ Agnes Ruzsa recalls the ethical dilemmas involved in ‘truth-telling’:

‘…when I became a trained oncologist I recognised that a lot of patients become terminally ill, and the hospital is not able to take care of this patient and we have to say to them, ‘Oh there is no problem, you can go home and your general practitioner will give you a pill and you will live in very good circumstances’, but it was not true.’¹²⁴

Dr Julia Lohinszki, in her account of the issue of “truth-telling” describes the kind of culture change that became necessary in the face of the increasing numbers of patients treated by the hospice services:

‘Usually it was [the practice] not to tell the truth, not for the patient. And in this last ten years we tried – it is respect to tell the truth to the patients. It’s necessary, and of course we cannot start a treatment without telling what the illness is - at the first moment. So now the surgeons also began to tell the truth, because a lot of patients came to us and they didn’t know their problem - why they have to come in an Oncology Department…The problem is, we have to say that the disease is progressive, that we have to finish the curative treatment - so this phase of terminal illness is a little bit sophisticated. And we speak a lot about how to tell, when to tell, and in what depth to tell the truth. But it’s now general to tell, and if some patients come and the relatives ask us not to tell the truth, we can try to discuss also with relatives - that it will be easier to communicate with a patient if everyone can tell the truth, and not to hide the problem and leave the patient alone.’¹²⁵

Katalin Muszbek provides a poignant example of the problems relating to ‘truth-telling’ in Hungarian culture:

‘…there is such a low education of the physician in psycho-social aspects that they do not know how to communicate, how to bring bad news, so they regularly say ‘ok it’s not such a big problem’. So I had a patient at 28 and that patient had a lot of metastasis in the bones and had big pain and he told me that he wants to die and he was asking the mother to bring the pills together and give them to him because he wanted to finish and then I told him it is just a short time that you have and he didn’t understand at first because in Hungary nobody told such a sadness to anybody and then the next day because I visited him everyday twice at least and he was in a very poor condition and I repeated and then he asked do you think that I am going to die and I told him yes I do, ‘how much time do I have?’ I said maybe seven weeks and then he told me ok, then I will say goodbye to everybody for a couple of weeks - I can survive no longer, and then he told me now he can understand why the young doctor is not coming and sitting with me everyday because the young physician does not know what to do or how to say it and really I was shocked by this communication because I never saw such a communication and I was a little bit worried that I did something wrong. It is more than 20 years since we had the first meetings on communication and ‘breaking bad news’ and I was so heated because this old professor told me ‘I am proud that I am [drawing my] pension and I did not tell anybody that they have cancer.’¹²⁶

Yet Katalin Muszbek also suggests that there has been definite improvement in this area in the last fifteen years - for example, ‘breaking bad news’ training courses are now being run.¹²⁷ Agnes Rusza recalls the development of these courses:

‘…we organised training on palliative care for oncologists and also some training about how to break bad news because it was also very important to programme because oncologists don’t like to say the bad news to the patients and for the relatives too, so it was another training programme, breaking bad news, and something new, and to give them, to provide them with knowledge about palliative care, about painkilling and symptom control too.’¹²⁸

Katalin Hegedus also suggests an improvement in this area:

‘I think telling the truth, its I think during these 20 years I am in health care in Hungary its changed a lot and about 60-70% of cancer patients are well informed. When I started to work in this field it was about 20% and now its changed…although it is the same problem that we spoke about relating to palliative education for young physicians - its normal to speak in a in a more empathic way and for medical students they have very strict communication skills about it but for older physicians nothing, unfortunately they don’t want to participate; we have a lot of communication training for physicians and there are many participants but only young people’¹²⁹

Katalin Muszbek suggests that spirituality and religion were discouraged during Socialist times but hospice care and spirituality may have grown together since the collapse of Communism (although there is no firm no research on this to date). The hospice service at Budapest Hospice House is provided independently of spiritual/religious belief.¹³⁰ Agnes Rusza recalls the change in religious and spiritual belief amongst people at the end of life:

‘And in this period people began to go back to the chaplains – because in the Communist period people [turned] their back [on] the chaplains and also the whole spiritual aspects of afterlife and also the illness too, and they change their mind and a lot of people who were coming closer to their death are asking me for a priest or somebody who can provide them with spiritual care too. It was very important because I thought the spiritual need was very high among these people…But some people don’t like to speak about the religious aspects of their life, and they always told me that, ‘It is not good for me because I am afraid to speak about this part of my life’, so it was very hard work for those people.’¹³¹

Katalin Hegedus summarises the current relationship between palliative care and some religious groups in Hungary:

‘In palliative care, after the communist era there were big changes in religion and spirituality, and during the communist era it was quite difficult to speak about it. And after the political changes yes we could speak about it. And there are only 40 priests for all the hospices in Hungary who agree to participate, and we wanted to contact with the Catholic University to get more contact with them and to get young priests involved in palliative care, but they don’t want to come really, I don’t know why. For example, there are two or three hospices in the Catholic Church who don’t want to come to the National Association, but I don’t know why, because sometimes you know there are a lot of National Congress conferences and we invite them and they don’t want to come but I don’t know why.’¹³²