These considerations also aim to show that Tischner’s proposal of the meeting of two people is governed by the same dramatic principles as the meeting between the physician and patient as well as the physician and patient in the face of his or her inevitable death. This arises and emanates from a reversal of the current order in medicine, and even in philosophy, in which personal freedom comes de facto before that of another human being. A reversal of this pattern also points to a new understanding of responsibility towards the other, here “standing” face-to-face with his or her own death, which becomes apparent in the proper understanding of accompanying the other person.

It should also be emphasized that the very topic of death was taken up by Tischner in a globally new way, and his illness and existence in the face of death became a confirmation and personal testament to the importance of these views.

The idea of perinatal hospice arose as a necessary alternative, giving hope and realistic support to parents who decide to continue the pregnancy and accompany their child for the duration of its life—often limited to the mother’s womb—until the child’s natural death. A family under perinatal hospice care can count on psychological support starting from the moment of the unfavourable diagnosis and continuing even after the death of the child. The hospice care team also includes doctors of various specialties who accompany the family through the individual stages: during the pregnancy, during birth, and also as the child is dying. Between the options to terminate the pregnancy and thus take the life of a terminally ill child, and to artificially extend the child’s life, both of which are possible and often practiced in contemporary medicine, there also exists the choice provided by perinatal palliative care, which aims to provide a dignified life and death for the sick child.

The American Academy of Pediatrics indicates the goal of children’s palliative care to be “to add life to the child’s years, not simple years to the child’s life”. This statement represents the quintessential idea of palliative care for terminally ill children. The primary goal of such care is to improve the patient’s quality of life, to alleviate the symptoms of the disease, relieve pain and provide psychological and spiritual support to the sick person and his or her loved ones.  By definition, this support of the patient’s loved ones does not end with the patient’s death, but also covers the grieving period. It is not possible to mandate a strict starting point of palliative care for the patient or its conclusion with the person’s loved ones. Based on four randomly chosen patients of the Father Józef Tischner Children’s Hospice in Krakow, we would like to demonstrate the key treatment points affecting the duration of palliative care and its later course. The diagnosis of a terminal illness that significantly shortens the patient’s life is difficult both for the attending physician and the patient’s family. Properly communicating such a diagnosis reduces stress on the family and speeds up the process of acceptance of the illness, and thus the decision to implement palliative care. The second difficult stage is the progression of the disease and the emotions it provokes in the patient, his or her family and medical staff. A lack of acceptance of the incurable nature and mortality of the disease by the attending physician leads to the use of futile measures to diagnose and treat the disease, which in turn extends the patient’s dying phase. In turn, a lack of consent to the death of a terminally ill child leads to a pathological cycle of grief among the child’s loved ones. Such behaviour also results in professional burnout among medical staff. Placing the patient and his or her closest family under individualized care that includes elements of palliative care at the moment the terminal illness is diagnosed would make it possible to reduce stress, alleviate the side effects of medication and, when causal treatment fails, allow a smooth transition to procedures aimed at relieving symptoms and maintaining the patient’s quality of life. At the same time, our analysis of the individual cases allows us to demonstrate that the health care system in its current form still fails young patients diagnosed with a terminal illness. The work of institutions like home hospice can in some way supplement the system and limit the scope of its failure. Unfortunately, we continue to observe that awareness in both society and the medical community, broadly understood, remains too low when it comes to the methods and range of care provided by a hospice care team to a terminally ill child and his or her loved ones.

The aim of the following work is to present the ways in which a family may accept the death of a child, based on the personal observations and experiences of staff at the Father Józef Tischner Children’s Hospice in Kraków.

Over the years 2011-2014, ninety-four children met the criteria for admission to home hospice. Eighty-four of them were diagnosed with an untreatable, chronic terminal illness and ten of them were diagnosed with cancer. During the period presented, twenty-eight of these patients died. Four case studies are presented.

We are all aware that there is no universal way to prepare for the death of a child. Each family deals with this situation in their own way. It is not possible to predict nor to direct the relatives’ reactions. Therefore, the hospice staff’s primary task is to support and accompany the family during and after the child’s death, as well as to protect the patient against any ineffective or exaggerated medical procedures while facing the terminal stages of the disease. Mutual trust, developed over the course of palliative care, seems to be the most important factor.

Methods: Fifteen persons under the care of the Infectious Disease Clinic were included in the study. The patients were divided into three equal groups: 1) patients undergoing peginterferon alfa ribavirin therapy, 2) patients post ineffective peginterferon alfa ribavirin therapy, 3) patients who had achieved SVR. Data was collected on the basis of semi-structured interviews. The material obtained was analysed in accordance with the grounded theory paradigm.

Results: Respondents mentioned stigma as a variable corresponding to a decrease in the quality of life. Its source was perceived in: 1) misidentification of the hepatitis C virus (HCV = HIV), 2) the image of the disease created by the mass media (“lethal virus”, “silent killer”), 3) stereotypes about people suffering from liver problems (“people with liver disease are drunkards”). The negative effects of stigma included: 1) deterioration of social support, 2) social isolation 3) limited access to basic health care 4) adverse emotional consequences (fear, sadness, anger) 5) self-stigmatization

Conclusions: This study, though small, allowed us to gather extensive material on the functioning of patients with chronic hepatitis C. It should be noted that the interviewees define themselves as being “marked” by the stigma of the disease, which corresponded with numerous negative consequences for both their mental and social situation. It is worth emphasizing that the above-mentioned consequences contribute to a decline in the welfare of the individual and indirectly hinder the healing process.

Study: The study was carried out as part of a master’s thesis in 2013 (unstructured interview, based on grounded theory methodology) and involved eighteen siblings of children with four types of chronic diseases: incurable genetic and neurological diseases, oncological diseases, mental disorders and diabetes.

Results: Based on the research, ten areas of life have been selected in which the impact of the disease is most apparent:

1.     An internal world often filled with feelings of fear, sadness and remorse.

2.     Relationships with the sick sibling – strong empathy with him/her.

3.     Entanglement in the sick siblings’ life.

4.     Relationships with parents- an unfulfilled need for contact and intimacy.

5.     Relationships with peers- sense of difference, withdrawal.

6.     Low self-esteem.

7.     The role of the family hero.

8.     Worsened physical well-being.

9.     Financial problems.

10.  Difficulties in school.

Discussion: Despite the small sample, we gathered a large amount of data on the specificity of the problems experienced by siblings of sick children. The findings show that, over the years of chronic disease, the siblings experience many difficulties that often limit their opportunities for development and impede their entrance into adulthood. Awareness of these difficulties should encourage consideration of assistance programs to improve their quality of life and increase their social opportunities.