About the project www.umirani.cz
Death accompanies us, it is a consequence of our birth, it applies to all of us and no one is going to avoid it. And still we do not talk about death very much. There are still many myths about dying. The information and discussion portal umirani.cz creates a space on Internet for information on dying, end-of-life care, on death and the ways to deal with it. It allows you to read and write about death, to ask questions and debate about it.
Those who come to the portal can read information prepared for nursing staff, doctors, patients, caregivers as well as the bereaved.
There are detailed texts for caregivers about how to care for their dying loved ones both in hospital and at home, what the principles of end-of-life care are, how to answer the physical, psychological and spiritual needs of dying people. You will also find tips to make caregiving easier and make the last moments of the lives of the terminally ill more comfortable. Family members can learn about the phases a dying person goes through when he or she receives a serious or terminal diagnosis. They may form an idea about what palliative care involves, what compensation tools for the ill are available and how to use them. There is also an overview of services within the social and health network as well as the directory of institutions providing palliative care and home care agencies all over the country. The part for caregivers is designed particularly for families that are caring for someone but also for medical staff and social workers.
There is a part of the portal designed for doctors. It includes expert papers and casuistries related to pain and other symptoms treatment. It states the main principles of the general palliative care including the care for the patient’s family. Some doctors may welcome advice on how to tell the patient about a serious diagnosis. There are also videos showing how to treat different types of patients. Doctors can also find some treatment limitations and medication specifics of treatment regarding certain diagnoses. Also basic information on treating the terminally ill is very important for general practitioners.
Also seriously ill people themselves can look for information on the portal – they can learn information on the causes of pain, the possibilities provided by current medical knowledge in treating and eliminating pain and other problems. Here they can find texts on ways of dealing with an incurable disease and handling the difficult situation they face.
The time of dying is a time of crisis, fear and uncertainty for relatives and friends of the departing person. In case they are in such a situation, they may ask themselves questions such as: “What happens in the process of dying? How can I say that death is on its way? How can I help? Is it normal that a dying person thinks he or she has died? What do I do at the moment of my loved one’s death? Will I be able to handle it if I haven’t gone through this before?” They can look for the answers in the section called Last Days and Weeks, which offers help for keeping someone company when they are dying. This includes not only thoughts on the last period of life but also everything we need to know on bodily changes during dying, what can happen during the last moments, what to do and how to behave right after the death, how to be available for the ill and how to be available to caregivers as well as how to behave to people whose close person has passed.
The bereaved can find texts explaining what happens during the first days and weeks, what grief is and how it develops, what reactions are normal during the grief period and how self-help groups work. In the difficult time after the death of a close relative it is necessary to arrange number of pressing administrative matters, therefore we offer advice on where to start when dealing with administrative bodies and how to proceed. Some will also make use of practical information regarding the funeral arrangements.
The www.umirani.cz portal does not only include information for the terminally ill, the caregivers and the bereaved. You will also find all the principal information on palliative treatment and hospice care.
The part called Myths On Dying contains information, which can eliminate our prejudices and rid us of unnecessary fear. Palliative care can solve a number of symptoms, fears and dread related to dying because it does not see the patient as merely a “diagnosed case” but as a human being, whose quality of life it can help to the very end. Here one can study everything regarding palliative care: from the definition to the history and to the situation abroad as well as in the Czech Republic.
The Library includes a glossary of basic terms regarding palliative care, a short legislation overview and answers to frequently asked questions. There are also expert papers, both original and adopted. In the section called student work you can find thematic papers of students of colleges and universities to download. Bibliography includes a sorted list of books related in various ways to life, disease, treatment, dying and grief.
We also offer the services of The Homecoming hospice care library, the catalogue of which is available on-line.
The portal regularly brings news regarding palliative treatment and hospice care. We send a monthly Newsletter to subscribers which contains information on important matters and events in the field and on changes on the portal.
Another important service offered for portal visitors is the Internet Advisory Desk. All received queries will usually be answered within 7 days by doctors, nurses, psychologists, medical care ethicists, social workers, priests and lawyers. Experts in various fields who answer the queries in the advisory desk, are living examples of how deeply and in how many ways death is present in our life and how many questions are related to it. Guaranteed anonymity makes it easier to ask questions and reduces the fear of the answer. Publishing the questions and answers (anonymously if the inquirer wishes) also helps other portal visitors. They often find their questions have already been answered.
The portal is not only a set of texts and articles, but also a place for vivid discussions, where people exchange both their good and bad experiences related to the death and departure of those close to them in a hospital, a hospice or at home. They can tell what they experienced, what they lost, what path they took, how the care for a dying person enriched them, what was difficult for them, what they want to warn others about, but also what they cherish and what has helped them.
Since the spring 2005 the portal has been visited by about three houndred thousand visitors, the average daily number of visits exceeds 700. The highest number of visitors was at the Internet Advisory Desk, News and in the Information for nursing staff and in the texts for the bereaved. The portal has been supported by the Phare EU project and OSF Praha foundation. In 2009/2010 it has been financed by the Amgen Foundation. The portal is currently looking for a partner, who would support its existence in a long term perspective.
Umirani.cz is operated by the hospic civic association Cesta domů. The English version of the website was financed by Open Society Fund Praha (East-east project 2008).
