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The preferred location for end-of-life care

Clinical Practice Guideline on Palliative Care in Paediatrics
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Question

What preferences do children in PPC and their families or carers have about where they receive care?

Recommendations

  1. It is proposed that the practitioner discusses with the child or adolescent and the family their preferences about the place of care and the place of death, taking into account their cultural, spiritual, and religious values.
  2. Care should be provided in the location preferred by the child and family, as long as this is appropriate to their care needs and the availability of services in their area.
  3. Wherever possible, paediatric palliative care should be provided in the child’s own home, 24 hours a day, as this is the place of care most often preferred by the child or adolescent and their family.
  4. Patients and their families must be able to change their place of care at any time, and there must be adequate coordination between the different levels of care. This option should be communicated to them from the outset.
  5. The patient’s and family’s preferences for the place of care should be recorded in the medical record and made available to the professionals involved in the patient’s care.

 

Rationale

The evidence is scarce and of low quality; however, it is important to note that there is consistency across studies regarding preference for place of care. Patients and families feel most comfortable and safe in their own homes, where they believe they can maintain as normal a life as possible. Above all, the CDG recognizes the importance of respecting the wishes of the patient and family in paediatric palliative care and this is reflected in the recommendations.

Complete clinical question

Full information on this question (available in Spanish), see:
http://portal.guiasalud.es/guia-en-capas/cuidados-paliativos-pediatria/#question-5

References

5. Ministerio de Sanidad, Servicios Sociales e Igualdad. Cuidados paliativos pediátricos en el Sistema Nacional de Salud: Criterios de Atención. Madrid: Ministerio de Sanidad, Servicios Sociales e Igualdad; 2014.

83. Vickers J, Thompson A, Collins GS, Childs M, Hain R. Place and provision of palliative care for children with progressive cancer: a study by the Paediatric Oncology Nurses’ Forum/United Kingdom Children’s Cancer Study Group Palliative Care Working Group. J Clin Oncol. 2007;25(28):4472-6. https://doi.org/10.1200/jco.2007.12.0493.

84. Hechler T, Blankenburg M, Friedrichsdorf SJ, Garske D, Hübner B, Menke A, et al. Parents’ perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer. Klin Padiatr. 2008;220(3):166-74. https://doi.org/10.1055/s-2008-1065347.

85. Kassam A, Skiadaresis J, Alexander S, Wolfe J. Parent and clinician preferences for location of end-of-life care: home, hospital or freestanding hospice?. Pediatr Blood Cancer. 2014;61(5):859-64. https://doi.org/10.1002/pbc.24872.

86. Friedrichsdorf SJ, Postier A, Dreyfus J, Osenga K, Sencer S, Wolfe J. Improved quality of life at end of life related to home-based palliative care in children with cancer. J Palliat Med. 2015;18(2):143-50. https://doi.org/10.1089/jpm.2014.0285.

87. Montel S, Laurence V, Copel L, Pacquement H, Flahault C. Place of death of adolescents and young adults with cancer: first study in a French population. Palliat Support Care. 2009;7(1):27-35. https://doi.org/10.1017/s1478951509000054.

88. Astray San Martín A. Encuesta sobre cuidados paliativos a pediatras de Atención Primaria en un área sanitaria de Madrid. Rev Pediatr Aten Primaria. 2010; XII (45):33-40.

89. Arias-Casais N, Garralda E, Pons JJ, Marston J, Chambers L, Downing J, et al. Mapping Pediatric Palliative Care Development in the WHO-European Region: Children Living in Low-to-Middle-Income Countries Are Less Likely to Access It. J Pain Symptom Manage. 2020;60(4):746-53. https://doi.org/10.1016/j.jpainsymman.2020.04.028.

90. Ananth P, Melvin P, Feudtner C, Wolfe J, Berry JG. Hospital Use in the Last Year of Life for Children With Life-Threatening Complex Chronic Conditions. Pediatrics. 2015;136(5):938-46. https://doi.org/10.1542/peds.2015-0260.

91. Noyes J, Edwards RT, Hastings RP, Hain R, Totsika V, Bennett V, et al. Evidence-based planning and costing palliative care services for children: novel multi-method epidemiological and economic exemplar. BMC Palliat Care. 2013;12(1):18. https://doi.org/10.1186/1472-684x-12-18.

92. Chong PH, De Castro Molina JA, Teo K, Tan WS. Paediatric palliative care improves patient outcomes and reduces healthcare costs: evaluation of a home-based program. BMC Palliat Care. 2018;17(1):11. https://doi.org/10.1186/s12904-017-0267-z.

Communication with the patient and family
Symptom assessment in paediatric palliative care