Development of Palliative Care

Project funded by OSI 2003-2004

In 2003-2004, Cesta domů has organized a Project funded by Open Society Fund (OSI) Prague, which wanted to improve the palliative care in the Czech Republic.

Based on the empirical research and summary of current experiences, the goal of Cesta domů was to prepare The Report of the state of dying and palliative care in Czech republic:

• to identify the main weaknesses of the current care for the dying in the Czech Republic and the main obstacles to the development of this care,
• to analyze experiences from other countries,
• to propose new national Conception of palliative care in the Czech Republic,
• to gain adequate support for this conception (professional and general public, political representatives, state and local authorities, health insurances, academic and educational institutions) and to start patiently realizing it,
• to improve the level of awareness of both professional and general public regarding the possibilities of modern palliative care and to promote principles of quality care for the dying in the whole system of health and social care.

Among the current primary obstacles of the development of palliative care in our country belong:

a) Lack of appreciation of the importance of palliative care, lack of knowledge of its methods and inadequate education of health care workers in the field of palliative medicine. Despite some improvement over the last years and despite devoted work of many physicians and nurses, care for incurably ill remains outside main interests of majority of health care providers. Unfortunately, many physicians and nurses don’t have the knowledge of, or are unable to use in practice, principals of treatment of signs and symptoms of terminal illness such as pain control, communication with incurably ill and with their families. Many health care providers don't know or don't believe, that current medicine is able to control practically any pain, regardless of the diagnosis or of the age of patient. Inadequate attention is given to the problematic of palliative medicine during the medical education and training of physicians, nurses, clinical psychologists and other professionals. Not just majority of population, but also significant part of medical personnel had no opportunity to witness professionally and humanly managed care for a dying person and his/her relatives. It is therefore not surprising, that most of the medical personnel do not know how to manage, sensitively and professionally, the dying of their patients and suffering that accompanies it, and prefer to turn their back to it.

b) Inadequate public knowledge of potentials of the care for dying and unwillingness of the society to occupy itself by these burning questions. Each one of us will sooner or later be faced by problems in care for dying. Yet in public, these problems are not adequately reflected and steps to their improvement do not belong to the long- term priorities of state, political parties or local governments. Care for terminally ill and dying is not considered of a long-term importance either by health policies makers or by media. Incurably ill people and their families therefore rightfully feel ostracized by the society.

c) Limiting and a motivation-lacking legislative frames of palliative care. Palliative care is not adequately based in our legal code and current health and social legislative frame does not support, or even obstructs, a dignified care for incurably ill. It is, first of all, the care for dying provided at home that is facing so many obstacles and some of the legislative provisions are responsible for inadequate treatment of pain and other symptoms of terminally ill. Very poorly protected are rights and dignity of dying patients.

d) Inadequate support of families who would like to care for their dying relative. Lacking is legislature that would allow a family member to care for a dying relative at home: best of all appropriate compensation for the loss of salary or, at least, protection of his/her job. Lacking is also a network of effective home-care agencies skilled in care for terminally ill, that would allow a family to provide care for their dying relative at home. As a result of all these deficiencies, many patients spend the end of their life in hospitals against their wishes, occupying financially expensive and for this purpose unsuitable beds. Grieving family members are then traumatized for a long time by the fact, that they were not able to offer their loved-ones a better alternative respecting their wishes, that they were unable to be with them and to properly part from them.

e) Unsatisfactory financing of palliative care. Financial support of palliative care by state and local governments remains inadequate with no attempt to seek long-term solution. Current financing of hospice beds is too dependent on out-of the system solutions, resulting in recurrent financial problems of these institutions and rendering impossible their development. Health insurances don’t provide for the specific character of palliative care and professional palliative care at home is not possible to reimburse at all. Yet research in other countries has proven, that support of palliative home-care brings not just improvement in the quality of life, but also considerable economical savings.

• Introduction to the Project
• Research and Reflection
• Implemented Changes
• Project Publications