During the World Day of the Sick, patients appealed that in the process of treating illnesses, human beings should not be forgotten and patients should be treated with respect and dignity. As part of the 13th Patients' Organisations Forum currently underway in Warsaw, the report "Dignity in Chronic Illness "* was presented, which includes the results of a survey conducted by the Institute for Patient Rights and Health Education [IPPEZ] on patients' sense of dignity in chronic illness.
The number of people with chronic diseases is increasing year on year. This is a global trend, resulting primarily from demographic conditions (ageing population) and unhealthy lifestyles, which cause more and more people to suffer from diseases of civilisation such as cancer, cardiovascular disease and metabolic diseases. There is also a systematic increase in the number of people with mental illnesses or autoimmune diseases. It is therefore very important to discuss the quality of life of patients with these conditions and how we should treat patients and their relatives. This year's World Day of the Sick, organised by the IPPEZ, is largely devoted to this issue. A sense of dignity is just as important as treatment. Medicine is making enormous progress in terms of treatment outcomes. More and more diseases are being successfully treated, changing from being fatal diseases to chronic diseases with which patients live for many years.
Undoubtedly, saving lives is the main objective of medical personnel. However, we must remember that patients in illness are accompanied by a great deal of fear. It is therefore not enough just to meet the medical needs of patients who, more than death, are afraid of losing control of their bodies and becoming dependent on others. -Dr Arkadiusz Nowak, Institute for Patients' Rights and Health Education
KEY FINDINGS OF THE REPORT "DIGNITY IN CHRONIC ILLNESS"
Carers, family and friends are most supportive during illness. The vast majoritý of respondents have chronic illnesses, in which there is often a rapid and often alsȯ terminal loss of health. Respondents emphasised that the illness "sometimes enslaves them", "causes sadness and limitations", increases "fear for the futuré", "is a burden", and that loved ones in illness arę "helpless" and "although theý carę, they often do not understand̨". The results of the survey show that we feel best in illness with those closest to us and it is from them that we receive the most support. Almost two-thirds (67%) of those surveyed feel they receive such support, and half (56%) said they also feel support from friends.
In second place is the medical staff. Here, however, only one in four patients feels that they receive adequate support in their illness from doctors and medical staff.
Respondents feel the least support̨ from clergy - one in three people. It is also interestinġ that with this question, one in 10 respondents refused to answer.
Physiology, loss of mind control and dependence on others are what patients fear most. Chronic patients have a number of social 'complicationś resulting from discrimination and downplaying of their needs, but also many complications resulting from the specific nature of the disease itself, including those of a physiological nature (e.g. incontinence, stoma), which are one of the factors that strongly determine the sense of dignity of the
It is a common sense assumption that people who are ill are most afraid of̨ death, while other issues, such as dependence on others or loss of control over the body and mind, are no longeṙ so important to them. The results of the study conducted seem tǫ contradict this common thesis.-sociologist Dr Tomasz Sobierajski
Only one in five respondents (20%) is not afraid of̨ losing control over basic physiological functions of their body. In contrast, two-thirds (66%) of respondents have concerns that their illness will affect their loss of̨ control over their sensory perception of the world. What - in addition to losing control over the body and mind - respondents with chronic illnesses fear most is dependence on others. 2 in 3 respondents (65%) fear̨ this condition, and one in two (48%) fear̨ it strongly.
This is one of the main conclusions that emerged from the survey carried out by IPPEZ. Interestingly, similar findings were presented as a result of a 2015 survey conducted in the USA**, in which one in two patients considered incontinence, being connected to a ventilator or other life support device as worse than death, and being completely bedridden, being fed parenterally and being dependent on the help of others as negatively as death from disease.Many studies show that in chronic diseases - in addition to the treatment process itself - the possibility of normal daily functioning with the help of medical devices, for example, plays a great role.
Access to these - tailored individually to the patient's needs and not officially rationed to the disease entity - allows the patient to maintain a sense of dignity in everyday, often intimate situations involving mobility or physiology and to function with dignity in the social world when interacting with other people.
Patients want to live a normal life and want to participate in society. One interesting element that emerged during the analysis of the survey results was also the relatively high level of optimism displayed by the respondents, the vast majority of whom were burdened with a severe chronic illness. 7 out of 10 (69%) people surveyed declared that they disagreed̨ with the statement that their life had no meaning. People with chronic illnesses and their carers do not want̨ to be relegated to the margins of society. However, one in seven patients surveyed feel that their sense of dignity in illness has been lost and 18 % feel that people avoid them̨ because of their illness. Despite this, the majoritý of respondents indicate a high level of determination in their illness and want to be treated as full members of society and the health system who, despite their illness, still have much to offer society.
* The 'Dignity in Chronic Illness' survey was conducted on a group of 145 respondents with the support of NGOs involved in the support of patients and their relatives in illness. The study sample consisted of 115 patients with chronic diseases, such as oncological diseases, musculoskeletal diseases, diseases of the nervous system, autoimmune diseases; and 30 carers, relatives of persons with chronic diseases, mainly dementias
**Survey conducted by Dr Emily Rubin of the University of Pennsylvania (USA) between 1 January 2015 and March 2016. It included 180 patients aged 60 years or older with conditions including advanced cancer and heart failure.