Paediatric Palliative Care Clinical Trial
Official title:
Paediatric End of Life Care Needs in Switzerland
Background Children living with life-limiting conditions have always been part of the health care system. Although there have been dramatic improvements in medical care, hundreds of children continue to die annually. The field of paediatric palliative care (PPC) and end-of-life (EOL) care is based on the principle that an interdisciplinary team should care for patients and their families. However, evidence on how to provide optimal PPC and EOL care covering the needs of children and their families is scarce and lags substantially behind that in the adult world. Few is known on how EOL care - defined as the last four weeks of life in this study - is presently provided in the Swiss health setting. The presented study Paediatric End-of-LIfe CAre Needs in Switzerland [PELICAN]) covers paediatric EOL care and will contribute to a comprehensive understanding of EOL care in Switzerland by analysing retrospectively medical charts of children/young people between 0 - 18 years who died in the years 2010 and 2011 in Switzerland. A survey instrument will be developed and pilot tested to assess the perspectives of families who have experienced the loss of a child. After the development pilot testing and adaptation of the instrument a survey with parents who lost a child in the years 2010 and 2011 will take place. Furthermore, the experiences and needs of health professionals working in the field of pediatric EOL will be explored.
Children living with life-limiting conditions have always been part of the health care
system. Although there have been dramatic improvements in medical care, hundreds of children
continue to die annually. In Switzerland, approximately 400 children (0 to 14 years of age)
die each year, about three quarters of those due to a medical condition. Infant deaths
account for approximately half of the deaths during childhood and are mostly due to
perinatal conditions. Complex chronic conditions such as congenital and chromosomal
abnormalities, diseases of the nervous system, cancer and cardiac conditions constitute the
most important group of disease-related death in childhood. This underlines the rationale to
include children who died due to an oncological, cardiological or neurological disease or
during the neonatal period (from birth up to four weeks of life) in this study.
Characteristics of End-of-Life (EOL) Care and death during childhood When the burden of
disease and poor quality of life outweigh the potential benefit of disease related
treatments, the focus of care shifts towards preparing for an anticipated death and managing
the end stage of a terminal medical condition. Through a process of literature review,
clinician and parent surveys and interviews, six domains of high-quality, family-centred EOL
care have been identified: 1) support of the family unit [the unit of care is the child and
the family, whereas family is defined as those who provide comfort to the child, regardless
of genetic relationship]; 2) communication with the child and the family about treatment
goals and plans; 3) ethics and shared decision making; 4) relief of pain and other symptoms;
5) continuity of care; and 6) grief and bereavement support. Nonetheless, questions about
how to best provide EOL care for dying children remain inadequately answered, as there are
no systematic studies on EOL care in children. Apart from that, there is a lack of
interventional studies, which are very difficult to perform in such an ethical sensitive
field of care.
Dying at home is often associated with good quality of EOL care and a "good death" and the
view that most patients prefer to die at home is commonly accepted. In reality, paediatric
home death rates, although growing, have remained low at 20% between 1999-2003 in the United
States. There is some evidence that parents whose child died at home from cancer show lower
levels of grief-related symptoms and psychological distress. However a recent study by
Dussel et al. showed that the opportunity to plan the place of death is associated with
outcomes consistent with high-quality EOL care, and thus may represent a more relevant
outcome than the actual place of death. Neonatal intensive care units (NICU) and paediatric
intensive care units (PICU) play a particular important role in EOL care as they are a place
where a high percentage of paediatric patients die. For newborns, only rarely exists a
valuable alternative to the NICU. It is important to know when, where and under which
circumstances children die, and to know the impact of characteristics of death on the
overall satisfaction of parents with EOL care. No data about current practice of EOL care
and the characteristics of the child's death exists for Switzerland.
Parents' perspectives on EOL care of their dying child EOL care of these vulnerable patients
and families demands a comprehensive approach that includes the need for health care
professionals to understand the illness experience from the perspective of the dying child
and its family. Guidelines for EOL care of children are focused on effective symptom
management and clear communication, yet parents' values for EOL care are still partly
unknown. There is overwhelming evidence that communication is central to the concerns of
parents and it is the principle determinant of high-quality care. Professional support in
the last four weeks of life was a significant factor associated with having worked through
their grief for parents who lost a child to cancer. Recently, a qualitative study was
conducted in Switzerland exploring the perceptions and needs of families who cared for a
child with life-limiting disease. Shortcomings were demonstrated and basic needs of affected
families such as psychosocial support, coordination of care and bereavement support were
outlined. To get a comprehensive picture of parental perspectives a population-based
assessment is needed to quantify and explain their experiences and needs. This is only
achievable through questionnaire survey and interviews with parents. As showcased by a
systematic literature review, no tools exist to assess the needs of parents whose children
died (i.e., in PICU). Questionnaires have been used in the field of EOL care, but none fits
the unique requirements of the PELICAN research programme covering four distinct diagnostic
groups.
Perspectives of health care professionals Several studies reported on barriers in the
provision of paediatric palliative care (PPC) and EOL care. To develop a successful program
for PPC and EOL care in Switzerland, barriers and gaps of knowledge, professional attitudes,
skills and structural preconditions need to be perceived. In Germany, a recent study
revealed significant shortcomings in financing of specialist nursing home care that
necessarily includes funding of coordination and case-management. Another issue was the
required openness towards PPC and EOL care from professionals, particularly physicians that
is a prerequisite for family-centred EOL care. There are only few articles describing how to
assess attitudinal, educational and institutional issues in professionals. One study from
Australia developed a questionnaire to measure barriers and facilitators of palliative care
in neonatal nursing. From 645 neonatal nurses 57% reported staffing as adequate to support a
palliative care practice, 57% reported that the environment of their unit was not conducive
to provide palliative care to dying infants, while 62% felt that they often went beyond of
what they estimated comfortable when providing technological life support to dying
new-borns. A study from the United States described barriers to EOL care for children and
their families, as perceived by paediatric health care providers. An important finding was,
that perceived barriers to paediatric EOL care differed from those impeding adult EOL care.
Commonly perceived barriers to paediatric EOL care involved uncertainties in prognosis and
discrepancies in treatment goals between staff members and family members. Improved staff
education may help to overcome some of these obstacles; however, the most effective methods
of improving nurses' and physicians' competences in PPC and EOL care remains to be
established. In Switzerland, a recent study with 76 paediatric health care professionals
explored expectations on specialised PPC teams. From the perspectives of non-specialised
care providers the tasks would particularly encompass the coaching of attending teams,
coordination of care, symptom control, and direct support of affected families during and
beyond the illness of their child. More systematic data and specific knowledge of the
situation in Switzerland is urgently needed to meet the needs of health care professionals
and provide them with adequate knowledge on how to best provide EOL care.
Rationale The field of paediatric palliative care (PPC) and EOL care is based on the
principle that an interdisciplinary team should care for patients and their families.
However, evidence on how to provide optimal PPC and EOL care covering the needs of children
and their families is scarce and lags substantially behind that in the adult world. Few is
known on how EOL care - defined as the last four weeks of life in this study - is presently
provided in the Swiss health setting. Generalizability of study results from other countries
is limited. In contrast to many other countries, there are no paediatric hospices in
Switzerland. EOL care is challenging for health professionals. Being aware of current
practices and the parents' perspectives helps showing the difference that good quality EOL
care and support can make to a family losing their child. To meet the parents' values for
care, it is important to assess the needs of this vulnerable group directly. Diverse medical
conditions imply different needs. This circumstance demands the development of a survey
instrument that matches specific diagnoses and their specific illness. In addition to the
parents', the evaluation of perspectives and needs of health professionals is important for
the development of services which should be used by non-specialized care providers. The
combination of a qualitative and quantitative approach enhances a comprehensive discovery of
this existentially high subjective human experience.
Study Aims The overarching aim of the present study is to provide comprehensive information
and understanding about the current practices of EOL care in the paediatric setting in
Switzerland (hospital and community health care), about parental perspectives and the
perspectives of the health care professionals in order to formulate required steps to
improve care during this highly vulnerable and critical phase of life.
Specific aims are stated as follows:
PELICAN I - Aims.
1. Description of current practice of EOL care in Switzerland for children/adolescents who
died from a cardiological, neurological or oncological disease, or who died during the
neonatal period
2. Exploration of differences in EOL care between the four diagnostic groups
PELICAN II - Quantitative aims.
3. Assessment of parental perspectives of EOL care in their child/adolescent, including:
- the development of a new survey instrument (questionnaire)
- validation and evaluation of psychometric properties of the new survey instrument
4. Exploration of differences in parental perspectives between the four diagnostic groups
PELICAN II - Qualitative aims.
5. Exploration of parental experiences and needs in their child's EOL care PELICAN II -
Mixed methods aims.
6. Explanation and interpretation of quantitative results by exploring parental
perspectives of EOL care in their child/adolescent PELICAN III - Quantitative aims.
7. Assessment of formal palliative care education (total hours of training or level A-C
according to the European Association of Palliative Care EAPC ), working environment,
knowledge and attitudes, and barriers of health care professionals, who are involved in
the EOL care of children.
PELICAN III - Qualitative aims.
8. Exploration of experiences and needs of health care professionals, who are involved in
the EOL care of children.
PELICAN III - Mixed methods aims.
9. Identification and understanding of unmet needs and requirements of health care
professionals to provide good quality paediatric EOL care.
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| Status | Clinical Trial | Phase | |
|---|---|---|---|
| Completed |
NCT04236180 -
Effectiveness of Specialised Paediatric Palliative Care
|
N/A |