Terminal care in paediatrics: where we are now

Hutchinson, Fiona; King, Norman; Hain, Richard

doi:10.1136/pmj.79.936.566

Cited by 29 publications

(13 citation statements)

References 4 publications

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“…For all (potentially) life-limiting conditions the relationship between cure and palliation should not be considered as mutually exclusive, because a neglect of treatment options with palliative intentions can cause unmet needs of patients and families [32]. The more secure the attitude of general paediatricians towards this morally and medically challenging topic, the better the quality of the individually provided health care will be.…”

Section: Discussionmentioning

confidence: 99%

Paediatric palliative home care in areas of Germany with low population density and long distances: a questionnaire survey with general paediatricians

Kremeike

Eulitz²,

Jünger

et al. 2012

BMC Res Notes

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BackgroundIn 2007, the patient’s right to specialised palliative home care became law in Germany. However, childhood palliative care in territorial states with low patient numbers and long distances requires adapted models to ensure an area-wide maintenance. Actually, general paediatricians are the basic care providers for children and adolescents. They also provide home care. The aim of this study was to improve the knowledge about general paediatrician’s involvement in and contribution to palliative care in children.FindingsTo evaluate the current status of palliative home care provided by general paediatricians and their cooperation with other paediatric palliative care providers, a questionnaire survey was disseminated to general paediatricians in Lower Saxony, a German federal state with nearly eight million inhabitants and a predominantly rural infrastructure. Data analysis was descriptive.One hundred forty one of 157 included general paediatricians completed the questionnaire (response rate: 89.8%). A total of 792 children and adolescents suffering from life-limiting conditions were cared for by these general paediatricians in 2008. Severe cerebral palsy was the most prevalent diagnosis. Eighty-nine per cent of the general paediatricians stated that they had professional experience with paediatric palliative care.Collaboration of general paediatricians and other palliative care providers was stated as not well developed. The support by a specialised team including 24-hour on-call duty and the intensification of educational programs were emphasised.ConclusionsThe current regional infrastructure of palliative home care in Lower Saxony can benefit from the establishment of a coordinated network of palliative home care providers.

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Section: Discussionmentioning

confidence: 99%

Paediatric palliative home care in areas of Germany with low population density and long distances: a questionnaire survey with general paediatricians

Kremeike

Eulitz²,

Jünger

et al. 2012

BMC Res Notes

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“…This finding is in line with the situation in other countries. England can be regarded as gold standard in the development of palliative care; however, recent publications report that there were only four physicians with a specialist paediatric palliative care qualification in 2003 [ 36 ] and five in 2006 [ 26 ], even though more were planned. A review by Liben et al shows that the integration of the growing knowledge in the field of paediatric palliative care into medical curricula is a great challenge [ 37 ].…”

Section: Discussionmentioning

confidence: 99%

Barriers and needs in paediatric palliative home care in Germany: a qualitative interview study with professional experts

et al. 2010

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BackgroundIn North-Rhine Westphalia (Germany) a pilot project for an extensive service provision of palliative care for children and adolescents has been implemented. Accompanying research was undertaken with the aim to assess the status quo of service delivery at the outset of the project and to evaluate the effects of the pilot project. As part of the research, barriers and needs with respect to paediatric palliative home care in the target region were explored.MethodsSemi-structured interviews with 24 experts in the field of paediatrics, palliative and hospice care have been conducted and were analysed by qualitative content analysis.ResultsFour main categories emerged from the interviews: (1) specific challenges and demands in palliative care for children and adolescents, (2) lack of clear legal and financial regulations, (3) gaps in the existing care delivery, and (4) access to services. Generally the interviews reflected the observation that the whole field is currently expanding and that certain deficits are temporary barriers that will be resolvable in the medium-term perspective.ConclusionsPredominant barriers were seen in the lack of clear legal and financial regulations which take into account the specific challenges of palliative care in children and adolescents, as well as in a shortcoming of specialist services for a local based care provision throughout the federal country.

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“…According to the World Health Organization (WHO), pediatric palliative care (PPC) is focused on achieving the best possible quality of life (QoL) for patients and their families and requires a multidisciplinary approach, encompassing physical, emotional, social and spiritual domains. [1][2][3] Based on this principle, the American Academy of Pediatrics Committees on Bioethics and Hospital Care recommended the development and broad availability of PPC services with child specific guidelines and standards. 4 Over the past decade, these standards have increasingly been integrated into the care of children and adolescents with severe, advanced life-limiting diseases in Germany.…”

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confidence: 99%

Specialized Pediatric Palliative Home Care: A Prospective Evaluation

Groh

Borasio

Nickolay

et al. 2013

Journal of Palliative Medicine

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Objectives: In Germany since 2007 children with advanced life-limiting diseases are eligible for Pediatric Palliative Home Care (PPHC), which is provided by newly established specialized PPHC teams. The objective of this study was to evaluate the acceptance and effectiveness of PPHC as perceived by the parents. Methods: Parents of children treated by the PPHC team based at the Munich University Hospital were eligible for this prospective nonrandomized study. The main topics of the two surveys (before and after involvement of the PPHC team) were the assessment of symptom control and quality of life (QoL) in children; and the parents'

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Terminal care in paediatrics: where we are now

Cited by 29 publications

References 4 publications

Paediatric palliative home care in areas of Germany with low population density and long distances: a questionnaire survey with general paediatricians

Paediatric palliative home care in areas of Germany with low population density and long distances: a questionnaire survey with general paediatricians

Barriers and needs in paediatric palliative home care in Germany: a qualitative interview study with professional experts

Specialized Pediatric Palliative Home Care: A Prospective Evaluation

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