Poland: The Status of Pediatric Palliative Care

Abstract

In 1996–1997, the author surveyed 122 physicians and nurses from 25 departments of pediatric oncology in Poland asking for their attitudes and opinions towards autonomy of incurable sick children, therapy applied in terminal stage, pain management, possibilities of providing palliative care, place of death, euthanasia, cooperation with hospices, professional preparation for work with dying children, and burnout syndrome.1Dangel T. Physicians' and nurses' attitudes towards children in terminal stage of cancer. In: Dangel T, ed. Palliative home care for children in Poland: model, needs, possibilities and their evaluation [in Polish]. Warszawa: Wydawnictwo Naukowe Scholar, 2001:58–102.Google Scholar The survey was performed two times, before and after a course in palliative care, to measure an impact of the author's educational program on the attitudes and opinions of the responders. The majority of surveyed physicians and nurses agreed with the need to provide information to children about diagnosis and treatment. However, only half believed that children should be informed about forthcoming death. The majority of responders agreed that children should participate in decisions about treatment, although they are against children's participation in decisions about withdrawing of curative treatment. The majority of physicians and nurses (78%) agreed with children's participation in decisions about choosing the place of death. Although, only half of them (51%) believed that children should be informed about forthcoming death. The majority of responders declared that the most appropriate place of death for a child is the family home. Simultaneously, there was a tendency to use life-prolonging methods, which, in fact, prevent child's homecoming. This tendency was significantly decreased by participation in the course of palliative care. Only 5% of responders have allowed for a possibility of active euthanasia in children in the terminal stage of cancer. The majority of responders (60%) felt professionally unprepared to work with incurably sick (dying) children and their families. This feature more frequently (85%) occurred in physicians and nurses with job seniority less than 5 years. Sixty percent of responders experienced symptoms of burnout syndrome, with the same frequency in physicians and nurses. The higher risk of burnout was found in those with job seniority over 5 years. Somewhat more than half (56%) of responders judged that protection of children against cancer and procedural pain was satisfactory in their departments; 43% of responders expressed contrary opinion. A significant percentage of responders did not mention any method of child's protection against pain during vein puncture (43%), lumbar puncture (13%), and bone marrow aspiration (11%). The majority of responders (68%) were of the opinion that there is a possibility of providing children with an appropriate palliative care in their departments, whereas 30% were of the contrary opinion. The majority of responders perceived the need for cooperation with hospices. However, only 37% confirmed the fact of cooperation between their departments and local hospices. Subsequent study determined the demand for palliative care in the population of children with life-limiting conditions in Poland.2Dangel T. Szamotulska K. Wojciechowska U. Demand for pediatric palliative care in Poland - epidemiological analysis.Pediatria Polska. 2000; 75 ([in Polish]): 695-707Google Scholar The data originated from the Central Office of Statistics, the National Cancer Register, the National Institute of Hygiene, and the World Health Organization. They focused on mortality and place of death in children to 19 years old, and provided an analysis of mortality/incidence ratio values. Overall, 14243 children with life-limiting conditions (age 1–19 years) died in Poland in 1985-1996 (on average 1187 per year). Seventy-four percent of them died in hospital and 26% died at home. The population of 3744 children who died at home consisted of children with cancer (48%) and non-cancer conditions (52%). The latter group consisted of children with cerebral palsy (24%), other neurological and chromosomal abnormalities (20%), and congenital heart disease and myocardiopathies (8%). The annual average number of children dying at home during that period was 312. The first pediatric palliative home care program in Poland—the Warsaw Hospice for Children (WHC)—was established by the author in 1994. In the first studied group of 134 WHC patients, 101 children died at home under the WHC care; hospice care had been withdrawn in 16 cases, and 17 children were still alive at the time of the survey. In the group of 109 deceased children, 93% died at home and 7% died in hospital. Among all 134 patients 59% were children with cancer and 41% with non-cancer conditions. The mean age of the patients was 10.5 years (range 0.1–27 years). The average period of care in the group of 101 patients who died at home was 137 days and was significantly different in the group of cancer (35 days) versus non-cancer (378 days) patients. Total period of care for cancer patients was 2485 days (18%) versus 11,340 days (82%) for non-cancer patients. Pain was the most frequent symptom, recognized in 84% of the patients. Severe pain most frequently was observed in children with solid tumors (71%) and less frequently in children with non-cancer conditions (3%). The average cost of one day of care for one patient varied from PLN 136 to PLN 252 (i.e. US$ 34–63) in 1995–2000.3Dangel T. Analysis of clinical experience and functioning of the author's model of home palliative care for children.in: Dangel T. model, needs, possibilities and their evaluation [in Polish]. Warszawa: Wydawnictwo Naukowe Scholar, Palliative home care for children in Poland2001: 103-122Google Scholar To evaluate the quality of care provided by the WHC, a study was performed using our own questionnaire.4Dangel T. Fowler-Kerry S. Karwacki M. Bereda J. An evaluation of a home palliative care program for children.Ambulatory Child Health. 2000; 6: 101-114Crossref Scopus (21) Google Scholar Data were collected from parents of deceased children. In the group of 136 parents/carers of 87 diseased children, information was obtained from 80 persons (59%). The expectations of parents about the hospice care were: my child would not suffer (n = 67), my child would feel safe (n = 47), we would receive psychological support (n = 44), my child would receive medical support (n = 37), the hospice would help make formal arrangements after my child's death (n = 26), our helplessness as caretakers would decrease (n = 23), we would receive spiritual support (n = 20), and we would receive financial support (n = 15). Helplessness was the most difficult and most common (n = 60) problem experienced by parents. Controlling pain and other symptoms was most frequently (n = 45) mentioned as a problem the hospice helped. Most responders did not speak honestly with their child about the child's death (n = 60, 75%). Forty-nine (61%) responders felt they were prepared for their child's death and 23 (29%) were not. Fourteen parents felt that their child accepted forthcoming death, and 12 felt their child did not. Twenty reported that their child was conscious and 35 described their child as unconscious. The majority felt that their child was peaceful (n = 53, 68%) and did not suffer (n = 46, 59%). Only 15 (19%) responders felt that their child suffered. Sixty-eight of the responders to this questionnaire received assistance from hospice staff with the funeral arrangements following their child's death; all of them reported this as a positive experience. Thirty-four (43%) parents decided to participate in the meetings of the bereavement support group. They felt that overcoming grief was easier when they met people experiencing similar suffering. Thirty-nine (49%) parents did not participate because of the following reasons: travel distance to meetings made participation impossible (n = 11), no need to participate (n = 8), or the bereavement program was too emotionally difficult (n = 15). Seventy-nine responders (99%) were satisfied with the hospice home care program. The mean satisfaction rate was 9.61 (Likert scale from 0 to 10). The WHC model of care has been recommended during annual courses on pediatric palliative care organized for physicians, nurses, and other health care professionals in 1996–2001. Seven consecutive courses were attended by 677 participants. In 1999, an educational center on pediatric palliative care was opened in Warsaw by the WHC. The Polish standards of pediatric home care were published in 1999.5Dangel T. Januszaniec A. Karwacki M. Standards of home palliative care for children.Nowa Medycyna. 1999; 6 ([in Polish]): 43-50PubMed Google Scholar The Minister of Health has not officially accepted this document and, therefore, it is not obligatory either for hospices and health insurance companies. The WHO guidelines “Cancer Pain Relief and Palliative Care in Children” were edited by the WHC in 2001 (20,000 free copies sponsored by the Ministry of Health and the Open Society Institute NY). A network of 32 hospices currently provides pediatric palliative home care. This group consists of 5 children's hospices (Lodz, Lublin, Myslowice, Poznan, and Warsaw) and 27 adult hospices (the list is available at www.hospicjum. waw.pl). Approximately 60% of the Polish population have access to this network. The annual number of patients (0–18 years old) admitted to these programs was 171 in 1999, 186 in 2000, and 214 in 2001. The main epidemiological factor that limits the development of pediatric palliative home care programs is the high rate of hospital deaths (74%) in the population of children with life-limiting conditions. Estimates by the WHC suggest that the presence of an operating home care program does not influence this factor: still only one-fourth of the potential population of pediatric patients has had access to palliative home care. This probably reflects Polish society's attitudes towards children dying from life-limiting conditions. The majority would prefer life-prolonging treatment than palliative care. Further progress will require cooperation between the network of hospices (non-governmental organizations) and the Ministry of Health to introduce a national program on palliative care and cancer pain management in children.