Introduction to the special issue on palliative care, end-of-life, and bereavement: Integrating psychology into pediatric palliative care.

Background: Rural pediatricians and adult-trained hospice teams report feeling ill-prepared to care for children at end of life, resulting in geographies in which children are not able to access home-based services. Objectives: To develop a pediatric palliative care curriculum for inpatient nurses and adult-trained hospice teams caring for children in a rural region. Methods: Curriculum design and delivery was informed by local culture through an interdisciplinary, iterative development approach with confidence, intention, and support measured pre-, post-, and 4 months after delivery. A needs assessment was completed by pediatric nurses caring for children receiving palliative or end-of-life care to inform curricular content (phase 1). A curriculum was designed by an interdisciplinary pediatric palliative care team and piloted with nursing cohorts annually through educational conferences with monthly discussion series for 3 consecutive years (phase 2). Curricular content was then provided for 31 rural hospice team members (phase 3). Results: Self-reported confidence in caring for children increased by 1.1/10 points for adult-trained hospice team members. Mean score for intention to care for children increased by 5.2 points (sustained 5.1 points above baseline at 4 months). Perception of support in caring for children increased by 5 points (mean sustained 5.4 points above baseline at 4 months). Family needs, care goals, and symptom management were prioritized learning topics. Rural hospices previously unwilling to accept children enrolled pediatric patients in the 4 months following the conference. Conclusion: Grassroots curricular initiatives and ongoing educational mentorship can grow pediatric palliative and hospice services in rural regions.

Download Full-text

Approaching the Necessity of Pediatric Palliative Care in Colombia: A challenge for the Health System. A Retrospective Cross Sectional Study.

10.21203/rs.3.rs-100110/v1 ◽

2020 ◽

Author(s):

Susana Orrego Villegas ◽

Karine Maria Posada España ◽

Silvia Librada Flores ◽

Juliana Lopera Solano

Keyword(s):

Palliative Care ◽

End Of Life ◽

Pediatric Population ◽

Cross Sectional Study ◽

Pediatric Palliative Care ◽

Cross Sectional ◽

Public And Private ◽

Attention Model ◽

Private Politics ◽

Clinic Practice

Abstract Background: Pediatric Palliative Care (PPC) focuses on achieving quality of life and control the symptoms for children during the sickness process, also provide support to the family in order to relief suffering and give response to needs assessment. In Colombia, this subspecialty does not exist, as a result of not having clinic practice guides and information about the population who benefit under 18 years of age. This study is to approach the necessity of PPC in our country, defining a methodology to characterize and estimate prevalence of pediatric population who may need special care in order to develop an attention model. Methods: A retrospective descriptive study was conducted among 80,926 members between 0 and 18 years of age who has a private health insurance in Colombia between January 1, 2016 and December 31, 2018. Data was obtained from the insurance transactional database. Patients were grouped based on the Association for children with life threatening conditions and their families (ACT) of the Royal College of Pediatrics four classifications plus perinatal group. Results were processed and analyzed using descriptive statistical functions in Microsoft Excel. Results: 1,694 patients (2,09%) were eligible to enter a PPC program according to their IDC-10 diagnoses based on ACT plus Perinatal Group classification. Approximately 54% were male, 57.97% were considered early childhood, 26.56% childhood and 15,47% adolescence. With regards to ACT classification and Perinatal Group; 55.55% of patients had diagnosis from Perinatal Group (55.55%) followed by group 4 (23.2%) and group 1 non-cancer (9.68%). Conclusion: Being able to identify patients in need of PPC programs early may increase it being utilize at the time of diagnosis and not wait till the end of life. This might also help alleviate misconception of PPC only being offered during the end of life period. This study should help with the development of public and private politics aimed to promote the creation of PPC programs in developing countries.

Download Full-text

Patterns of Hospice and Home-Based Palliative Care in Children: An Ohio Pediatric Palliative Care and End-of Life Network Study

The Journal of Pediatrics ◽

10.1016/j.jpeds.2020.04.004 ◽

2020 ◽

Vol 225 ◽

pp. 152-156 ◽

Cited By ~ 2

Author(s):

Daniel H. Grossoehme ◽

Lisa Humphrey ◽

Sarah Friebert ◽

Lili Ding ◽

Gang Yang ◽

...

Keyword(s):

Palliative Care ◽

End Of Life ◽

Pediatric Palliative Care ◽

Home Based

Download Full-text

Quality of Living and Dying: Pediatric Palliative Care and End-of-Life Decisions in the Netherlands

Cambridge Quarterly of Healthcare Ethics ◽

10.1017/s0963180117000767 ◽

2018 ◽

Vol 27 (3) ◽

pp. 376-384 ◽

Cited By ~ 2

Author(s):

MARIJE BROUWER ◽

ELS MAECKELBERGHE ◽

WILLEMIEN DE WEERD ◽

EDUARD VERHAGEN

Keyword(s):

Palliative Care ◽

The Netherlands ◽

End Of Life ◽

Pediatric Palliative Care ◽

End Of Life Decisions ◽

Quality Of Dying ◽

Quality Of Living ◽

Life Decisions ◽

The Relationship

Abstract:In 2002, The Netherlands continued its leadership in developing rules and jurisdiction regarding euthanasia and end-of-life decisions by implementing the Euthanasia Act, which allows euthanasia for patients 12 years of age and older. Subsequently, in 2005, the regulation on active ending of life for newborns was issued. However, more and more physicians and parents have stated that the age gap between these two regulations—children between 1 and 12 years old—is undesirable. These children should have the same right to end their suffering as adults and newborn infants. An extended debate on pediatric euthanasia ensued, and currently the debate is ongoing as to whether legislation should be altered in order to allow pediatric euthanasia. An emerging major question regards the active ending of life in the context of palliative care: How does a request for active ending of life relate to the care that is given to children in the palliative phase? Until now, the distinction between palliative care and end-of-life decisions continues to remain unclear, making any discussion about their mutual in- and exclusiveness hazardous at best. In this report, therefore, we aim to provide insight into the relationship between pediatric palliative care and end-of-life decisions, as understood in the Netherlands. We do so by first providing an overview of the (legal) rules and regulations regarding euthanasia and active ending of life, followed by an analysis of the relationship between these two, using the Dutch National Guidelines for Palliative Care for Children. The results of this analysis revealed two major and related features of palliative care and end-of-life decisions for children: (1) palliative care and end-of-life decisions are part of the same process, one that focuses both on quality of living and quality of dying, and (2) although physicians are seen as ultimately responsible for making end-of-life decisions, the involvement of parents and children in this decision is of the utmost importance and should be regarded as such.

Download Full-text

The Most Important Aspects for a Good Death: Perspectives from Parents of Children with Cancer

INQUIRY The Journal of Health Care Organization Provision and Financing ◽

10.1177/00469580211028580 ◽

2021 ◽

Vol 58 ◽

pp. 004695802110285

Author(s):

Ji Yoon Kim ◽

Bu Kyung Park

Keyword(s):

Palliative Care ◽

End Of Life ◽

Linear Regression Analysis ◽

Living Will ◽

Good Death ◽

Pediatric Palliative Care ◽

Children With Cancer ◽

Cross Sectional ◽

Cancer Data

A good death is an important concept in pediatric palliative care. To improve the quality of pediatric palliative care, it is imperative to identify which domain is most important for a good death among children with cancer and their parents. This study aimed to (1) assess the essential domains for a good death from the perspectives of parents whose children have cancer using the Good Death Inventory (GDI) and (2) examine which characteristics are associated with the perception of a good death. An anonymous cross-sectional questionnaire was administered to 109 parents of children with cancer. Data were collected using a validated Korean version of the GDI. Descriptive statistics, t-test, and ANOVA were used to identify the preferred GDI domains. Multiple linear regression analysis was performed to identify factors associated with the GDI scores. The most essential domains for a good death included “maintaining hope and pleasure” and “being respected as an individual.” The factors most strongly associated with the perception of a good death were end-of-life plan discussion with parents or others and parental agreement with establishing a living will. Encouraging families to discuss end-of-life care and establish a living will in advance can improve the quality of death among children with cancer.

Download Full-text

Pediatric Palliative Care: An Assessment of Physicians' Confidence in Skills, Desire for Training, and Willingness to Refer for End-of-Life Care

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909107312592 ◽

2008 ◽

Vol 25 (2) ◽

pp. 100-105 ◽

Cited By ~ 46

Author(s):

M. Joan Sheetz ◽

Mary-Ann Sontag Bowman

Keyword(s):

Palliative Care ◽

End Of Life ◽

End Of Life Care ◽

Pediatric Palliative Care ◽

Life Care ◽

Willingness To Refer

Download Full-text

Pain therapy, pediatric palliative care and end-of-life care: training, experience, and reactions of pediatric residents in Italy

European Journal of Pediatrics ◽

10.1007/s00431-014-2304-8 ◽

2014 ◽

Vol 173 (9) ◽

pp. 1201-1207 ◽

Cited By ~ 3

Author(s):

Francesca Rusalen ◽

Anna Ferrante ◽

Chiara Pò ◽

Michele Salata ◽

Caterina Agosto ◽

...

Keyword(s):

Palliative Care ◽

End Of Life ◽

End Of Life Care ◽

Pain Therapy ◽

Pediatric Palliative Care ◽

Life Care ◽

Training Experience ◽

Pediatric Residents ◽

Care Training

Download Full-text

Approaching the necessity of pediatric palliative care in Colombia: a challenge for the health system.

10.21203/rs.3.rs-41367/v1 ◽

2020 ◽

Author(s):

Susana Orrego ◽

Karine Posada ◽

Silvia Librada ◽

Juliana Lopera

Keyword(s):

Palliative Care ◽

End Of Life ◽

Pediatric Population ◽

Pediatric Palliative Care ◽

Public And Private ◽

Attention Model ◽

Private Politics ◽

Life Threatening ◽

Group 5 ◽

Clinic Practice

Abstract Background: Pediatric Palliative Care (PPC) focuses on achieving quality of life and control the symptoms for children during the sickness process, also provide support to the family in order to relief suffering and give response to needs assessment. In Colombia, this subspecialty does not exist, as a result of not having clinic practice guides and information about the population who benefit under 18 years of age. This study is to approach the necessity of PPC in our country, defining a methodology to characterize and estimate prevalence of pediatric population who may need special care in order to develop an attention model. Methods: A retrospective descriptive study was conducted among 80,926 members between 0 and 18 years of age who has a private health insurance in Colombia between January 1, 2016 and December 31, 2018. Data was obtained from the insurance transactional database. Patients were grouped based on the Association for children with life threatening conditions and their families (ACT) of the Royal College of Pediatrics four classifications plus perinatal group. Results were processed and analyzed using descriptive statistical functions in Microsoft Excel. Results: 1,694 patients (2,09%) were eligible to enter a PPC program according to their IDC-10 diagnoses based on ACT plus group 5 classification. Approximately 54% were male, 57.97% were considered early childhood, 26.56% childhood and 15,47% adolescence. With regards to ACT classification and group 5; 55.55% of patients had diagnosis from group 5 (55.55%) followed by group 4 (23.2%) and group 1 non-cancer (9.68%). Being able to identify patients in need of PPC programs early may increase it being utilize at the time of diagnosis and not wait till the end of life. This might also help alleviate misconception of PPC only being offered during the end of life period. This study should help with the development of public and private politics aimed to promote the creation of PPC programs in developing countries.

Download Full-text