Number 10/2015

Issue Topic: Pediatric palliative care

List of abstracts

This article aims to depict the meeting of two people leading to the realisation of the concept of home hospice care for children: the meeting of a physician and a person whose life has been influenced by the person and thought of Fr. Prof. Józef Tischner. The physician’s approach to medicine that we wish to portray in this article is very close to Józef Tischner’s thought, even though he or she is not involved with it on a daily basis. For the past ten years, this meeting has thus taken place each day in the practice of home hospice care for children, whose patron is Józef Tischner. The individual faith of the physician, which reveals his or her approach to sick and dying young patients, to people, to the role of medicine and the significance of the singular challenges arising from these young patients is for us a pretext for taking up the problem of the meeting point of two people, of the tragic nature of being human in the world, of the drama that plays out between the physician or nurse and psychologist and the dying young person and of his or her existence in the face of death, all by considering them according to the values left by our patron.

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 great progress that has been made in medicine in recent years, particularly in intensive therapy, which has enabled the replacement of insufficiently functioning vital organs with modern medical technology, even for several months, has made it possible to keep critically ill patients alive, including significantly premature children with various genetic disorders or severe congenital defects that make it impossible for them to live independently. The chance of the effective treatment of many illnesses is significantly higher today than even a few years ago. These seemingly limitless therapeutic possibilities are unable to change reality, however. In many situations, physicians must still admit they are helpless in the face of the seriously ill for whom nothing more can be done. We refer here to situations in which admiringly tenacious therapy (as popularized by the media) aiming to save everyone, always, even when it is unable to ensure the patient’s return to health, makes it so that emergency treatment can only worsen the patient’s already-poor quality of life. The steady progress in medicine that we see unfolding before our very eyes is constantly shifting the boundaries of medical intervention. However, the enormous treatment possibilities afforded by contemporary medicine more and more often give rise to questions of what the “strict limits of medical intervention” are or should be.
This article aims to present the idea of perinatal palliative care, which may also be described as perinatal hospice care. This is a relatively new field of medicine that began in the 1990s, and since that time has grown both in Poland and around the world. While relying on the principles of palliative care, the field has its own specific nature, resulting from the fact that the focus is on the pregnant woman awaiting the birth of a terminally ill child. The current technologization of medicine and the possibilities it affords of diagnosing severe damage to the fetus, as well as artificially extending the child’s life, poses an ever greater number of ethical dilemmas. These dilemmas are related to decisions concerning human life and death. One of the answers may be abortion legislation, which—including in Poland—allows for the termination of a pregnancy with a severe diagnosis. Yet legal regulations also extend into practice. Numerous specialists working with pregnant women expecting to give birth to a terminally ill child recommend or even force the women to terminate the pregnancy, often presenting it as the only viable solution and thereby limiting the parents’ independent and fully conscious choice.

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 Father Joseph Tischner Children’s Hospice in Cracow supports terminally ill children, their families, and parents who have experienced the death of their child. The specific profile of childhood diseases requiring palliative care demands a special approach in pediatric hospice care. The most frequent disabilities in children are due to congenital diseases connected with progressive neurodegeneration and with a long-term course of unexpected deterioration and a sometimes unpredictable life span. Late-stage cancer is less frequent in pediatric hospice care. The prolonged duration of the terminal state in severe children’s diseases, a progressive loss of vital functioning and the need for parental devotion to the care of the affected child all limit everyday family life, present barriers to social and economic advantages, and many times lead to stigma.  Pediatric hospice care focuses on the child’s and family’s well-being within the realities of the disease. Here we present the findings of a survey conducted among 54 parents of severely affected children treated in home-based hospice care and of parents who lost their children to incurable diseases. The questionnaire concerned their lives and financial situations as well as personal and social issues connected with the experience of the disease and the child’s death. Disability’s impact on everyday family life was demonstrated, as well as financial limitations and the availability of institutional aid. Possible personal and societal influences on the borderline situation of those who experience a child’s incurable disease and death are discussed. Finally, we attempt to analyse the issue of identifying problems and supporting the family in home-based pediatric palliative care.
The death of a child is an extremely difficult experience. This is especially true nowadays, in times of great progress in medicine, when a child’s death is considered to go against the natural order of things. While the death of an elderly family member is usually met with grief, yet taken naturally, the death of a child is always a severe interruption to a family’s existence.

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.

Background: Social stigmatization is a multidimensional phenomenon, which undoubtedly has negative effects on the individual or social group. It is defined as the process of depreciation of a certain group of persons arising from stereotypes and cognitive distortions that have been formed on the basis of incomplete, unverified knowledge. As a result, a person “marked” by the stigma is perceived as inferior. The consequences of such a stigma are considered in numerous studies. Researchers have mentioned such effects as: social isolation, self-stigmatization and a decline in self-esteem and in the level of acceptance of the disease.

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.

Background: A person’s illness has an influence on his or her entire family system and each of its members (Świętochowski, 2010). The need to adapt to this non-normative situation affects their quality of life, meant here as life satisfaction. We can find a number of studies on the specific nature of the problems experienced by parents of sick children or those who have sick parents. However, very little research has been done on the quality of life for siblings of children with chronic diseases. The experiences of people cooperating with sick children’s families point to the different, specific way of life of such a family. Over the years, healthy siblings are brought up in the shadow of the disease. Consequently, the aim of this study is to present the specific problems they experience and to use this knowledge to help create a support network for them.

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.