Interview - Martina Spinkova, Czech Republic (http://www.hospice.hu/newsletter)

 

We have heard about the great achievements in the Czech Republic. What do you consider the most important and how do you see the position of your country in Europe?

In our country there are 8 in-patient hospices, all were built since 1989. The availability of strong opioids in our country is very good, very similar to availability in Germany or Austria. The only barrier is the hesitation and low information about using opioids in pain therapy among GPs. They are mostly very afraid about it and do not know, how to use it in pain management both at dying and not dying patients. Lot of people, both professionals and volunteers, are interested in hospice idea. I estimate there are hundreds of those people and the number of them is increasing. I consider it to be of the greatest importance: until the people aren't engaged, we don't manage to change nothing. Taboo of death and dying is still heavily laying on all of us. And even we have made a lot, it's necessary to change a lot, too. In our country if compared with European countries, such changes are obstructed by lot of legislative, economic, political and social obstacles. Here are the main of them:

1. Quality care for the dying people exists but it is available to a very small proportion of citizens only. In our hospices dies 1% of dying people. The people, I'm afraid, see this situation as not good, but the real depth of this problem is not yet fully recognized. With the ongoing emancipation of patients, major changes in this perception should be expected. The death is taboo, very often people think, that their dying relatives must stay in hospital, they are afraid about care at home.

2. We have only four places in Czech Republic, where home-based palliative care is beginning to be offered, but there's no opportunity to finance this type of care systematically. Lot of our forces we have to spend for self – fundraising.

3. The state of care for the terminally ill and dying in nursing homes and retirement homes is very bad, with no knowledge about quality of end-of-life care, with very insufficient funding and staff.

4. The education of health care providers and other caring professionals is not good. Subjects of palliative care should be included into the obligatory pre- and post-gradual curricula in medical school and nursing school study plans.

I am impressed how consciously and approriately you use the media, the policy makers. Great that you have brought meetings directly to the Czech Parliament.

It's nice you know about it in Budapest, so far from Prague! Yes, we tried and are trying to be heard. Not we personally, but we wanted to let people know, that the death is our death and the dying people are still living, sometimes very hard and very sadly, but very, very close to us. We wanted to let people know, it's the real problem and concerns all of us. We cooperate with some very involved journalists, we have made some TV documents about death and dying, charity concerts, exhibitions. Sometimes it's difficult to do it this way, never I'm satisfied with such way to speaking to people – via media - but it works.

The achievements of project that was financed and initiated by OSI Prague – Support of Palliative Care in CR – we've presented twice in Parliament of CR because if it is presented on such an important place, the people, especially important politicians, doctors and decision makers come and hear….and perhaps also help. It's necessary. I've said lot of good things were done, but very little of those, that must be done in politics – legislation, systematic financing and education. It is waiting now especially just for politicians.

We have written, translated and edited some very important and helpful publications and these we've presented in Parliament. (You can download these documents on the archive of Cesta domů in English.) They were:

1. On Organisation of Palliative Care - an essential document of EU, emphasizing palliative care as an enormously important part of the system of health care services; necessary for further development of palliative care and for the establishment of national palliative care.

2. Palliative Care Policy Concept in the Czech Republic - a draft of palliative care policy in the Czech Republic is based on the hitherto experience with delivering palliative care both abroad and in the Czech Republic. It sets up concisely further targets for general and special palliative care, determines the needed legislative and organisational changes and recommends next steps necessary to implement the sought development.

3. Education in Palliative Care -Training programmes designed for university and graduate education of physicians

4. Home Palliative Care Standards - Basic standards applicable to special palliative home care. The draft is based on similar standards used in the countries with an advanced network of mobile hospices and on more than two-year experience from the work of our mobile hospice Cesta domů. The document defines a field palliative care policy, describes necessary basic organisational structures and procedures and it can be used by those who intend to found and operate mobile hospices in the Czech Republic.

 

You do have a National Association. What is its role?

The National Association is established right now and has just begun to work. It is defined as Association of hospice care providers and want to built up respect for hospice care in public and also between politicians and help to find better system of financing the hospice care.

What do you consider the next steps to be taken on the national level?

We need better legislation and structural changes to be made for not such a great number of people have to die without quality end-of-life care.

1. Better system of education of health care professionals must be implemented..

2. The system of financing of palliative care, both home-based and in-patient, must be established – it means to negotiate with friendly societies (health insurance societies).

3. Palliative care must be a respectable part of health care system in our country – so it's necessary to be confirmed in the law.

4. Non-professional carers must have better conditions to provide the care at home without worrying about loosing their job while they provide care to their dying relative – so it is necessary to prepare a new act, that help implement these conditions.

What has been the role of OSI on the field of palliative care in your country?

OSI help to realize structural changes in our country. For me both personally and professionally the support of the project of Development of Palliative Care in CR was a great inspiration: they really helped to identify the problems and to seek and find ways to establish better system, implement structural changes. It is a clever, motivating funding. We have to learn from OSI a lot.

And how do you see palliative care in your country in 5 years time?

I'm afraid I have no time enough to think so much forward. I only hope our dreams'll come true, it means our work will bring results. At least home-based palliative care could be financed systematically, some more in-patient hospices will be built, doctors of medicine will be educated in palliative medicine and pain treatment. But these dreams we have to implement ourselves, haven't we? Your achievements in your country in last year are for me a great support!

The enthusiasm you have is so impressive. I wonder what is your professional background?

Very funny. I'm sorry, I'm an artist. As I have been at home with my children, I've illustrated, mostly the books for children and also I worked as an art editor in publishing houses in Prague. My children are great now (Barbara 26, Adam 23, Marie 21, Teresa 19, Jan and Katherine 17 and Frantisek 11) and I wanted to do something for dying people, not only for little children. I hope, it'll have sense and will bring – sometimes in future – also some fruit….

 

So, I suppose those very nice graphics on your website are your own work.

Yes.

Cesta domu is your team in Prague, providing different types of care. Does it help your advocacy activity?

The team of Cesta domů is for me a little wonder. 22 employees and circa 40 volunteers are people who came to help the palliative care to increase in very nice way. Each of them has his/her own drive and inspiration, and they cooperate very well together. We provide a palliative care at home, we are the only mobile hospice in Prague. Five nurses, three doctors, psychologist, social worker and other professionals. Our team offers bereavement help, too.

Some of employees worked on our OSI project and now established a new website for dying people and their care – providers (www.umirani.cz - unfortunately only in Czech). Beside all the information it offers moderated discussions, both self-help and with professional consultants. This website helps to use and spread our experiences very brightly.

Brand new is our library for students, care-providers, bereavement-groups, nurses, MDs.

And all these activities help us to reflect the real needs of the dying people and all those, who help them to live till the end. We use our experience both in our activities (website and printed documents) and in advocacy – in proposals of law changes, proposals for financing of mobile hospice care in our republic, in persuading our decision-makers. This is a really great comfort for me to know about all our clients (and their families), who really have lived at home till the end. Bravely, softly, patiently. And the strength and patience of all who work in our hospice bring me strength and patience and hope in that moments, when structural changes can't be seen at all.

 

You are the mother of seven children. What do they know and think about your job?

When I'm drawing, they can speak with me, I have a lot of time to speak with them, I think, they like it. When I'm making this strange PC, it's perhaps more boring for them. But I think (and feel) they have a great respect with this work and help me very much. They know about the job a lot, I'm afraid we discuss the problems and questions of palliative care and our hospice sometimes too often at home. Some of them work in hospice both as volunteers and employees. And often they bring me nice fresh inspiration – as children so often and so nice use to do.

As an artist, how did you get involved in palliative care? It is always interesting to see the personal drives, and what makes people most satisfied in everyday work.

Oh! I have really get involved…at the beginning I knew I can be near dying people and help them die well. But now it seems, that means to spend a lot of time with finding money for our hospice and respect for palliative care, to negotiate with authorities, media and decision-makers. I try to be happy also in this way, although I think, that this finding of funding of palliative care could do the politicians much better.

My hope and my strength grows up from doing things that have good sense. I don't need to see outcomes immediately, I only need this hope I'm on the way. I think, this is the only way we can live our life so I'm trying all the day long to do things so. From this point of view for me it's the same to be with children, dying people, to write poems or draw pictures or clean the house. And the most important – I'm on my way with my man, whom I am in love with.

The way goes up and down, we have to go both through dark valleys and windy mountains. When I want to write good poems, draw good pictures or to understand people's sorrows, it's not good to walk only on sunny paths…

Melinda Szöllősi