Research

A first major research in the Czech Republic, focusing on the care for the terminally ill and dying, was conducted in 2003-2004. The following results were obtained:

The public is unhappy with the current state of care for the dying. Even the best evaluated area of care (treatment of pain) was judged as “good” by 7% of respondents only, and “as rather good” by 29%.
Alarming is the discrepancy between preferences of the public and the actual status of care provided for the terminally ill and dying in our country: approximately 75% of all death occur in health care or social care facilities (hospitals, nursing homes, retirement homes), yet 80% of those, who responded to this question, would not want to die in these institutions.
The group of students evaluated current care for the dying even more critically than the public. It is, therefore, not surprising, that 91% of them evaluate the improvement in care for the dying as important.
The most critical in their evaluation of care for the dying are those who have most experience with it; i.e. health care providers and social workers. And especially those who provide care for the dying most frequently (oncologists, workers of nursing homes, retirement homes and hospices).
Large numbers of the dying suffer from inadequately controlled pain and from other physical symptoms, though modern medicine can effectively treat most such problems.
The area of care for the terminally ill and dying, which is viewed most critically by both the lay and professional public, is the attention paid to psychological suffering of patients and the attention given to their families and friends.
90% of interviewed young physicians feel that they are not trained to communicate with the terminally ill and their families.
Specialized, modern type of palliative care in hospices is available to only 1% of all terminally ill and dying.
Continuity and coordination of care for the dying is frequently poor. In the last weeks of their life patients are frequently being transferred between various health care facilities.
Participation by patient and family in important decision-making regarding the treatment is rather an exception. Communication between physicians and patients regarding diagnosis and prognosis varies and is generally inadequate.
The family of a terminally ill patient that decides to care for their patient at home undergoes a risk of an extremely demanding process without security of any financial support, and, at times, against opposition from their physician.
No institution in the Czech Republic currently monitors the quality of care for the dying. No criteria for this care have yet been developed.

Reflection

The law level of care for the dying in our country is alarming, despite efforts of many health care and social work providers.

Quality care for the dying exists but it is available to a very small proportion of citizens only.
Though the public views the level of care for the dying very critically, 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.
Health care providers evaluate the quality of care for the terminally ill and dying even more critically than the public. Increasing experience of health care providers with the care for the dying also increases negative views of the current level of that care.
The most pressing problems at this time include:
In view of the expected demographic changes during the next decades it must be expected that urgency of problems in this area will grow significantly and necessary changes must therefore be realized as soon as possible.
Experience from abroad demonstrates that:
Our research also proved pressing need to:
- Improve the quality of care for the dying,
- Radically increase the access to modern palliative care,
- Develop home-based palliative care,
- Profoundly improve the care for the dying in health care and social institutions, most of all in nursing homes and retirement homes.