The Limits of "Life-Limiting"
pediatrics; hospice; life-limiting; life-threatening; terminal; risk
The field of hospice and palliative medicine has struggled to define the conditions that are appropriate for palliative care. "Life-threatening" appropriately encompasses lethal conditions and helpfully incorporates the concept of probability, which is a necessary variable in any risk calculation. Yet it leaves one important group of patients unaccounted for: those whose primary need for palliative care is not expected abbreviation of life but rather the quality of that life. In an attempt to include these patients, the term "life-limiting" has come to be used more frequently. Although attractive in its breadth-and at first glance appearing to be a less threatening way to introduce palliative care-the term is inherently flawed. It denotes a certain outcome, without any consideration of the likelihood of that outcome. Rather than "softening the blow" of introducing palliative care, the term seems to condemn a patient to the very outcome that palliative care is tasked to ameliorate, namely, the limitation of life. As such, it may provide a distorted view of what palliative care is, especially in pediatrics where the term is used with disproportionate frequency. The inherent misplaced certainty of "life-limiting" and the self-defeating message it sends to patients should be acknowledged.
Macauley R C
Journal of Pain & Symptom Management
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2019.03.010" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.03.010</a>
Integrating Pediatric Palliative Care Into The School And Community.
Chronic Illness; Hospice; Life-limiting; Life-threatening; Pediatric Palliative Care; Quality Of Life; School; Transition
Children and adolescents with complex chronic conditions often receive pediatric palliative care (PPC) from health care professionals. However, children's needs exist both in a health care context and in the community where children interact with peers, including school, places of worship, sports, activities, and organizations. Partnerships between PPC professionals in health care settings and teachers, coaches, spiritual leaders, activity directors, and others, may lead to greater health and well-being. Children near the end of life or those with out-of-hospital do-not-resuscitate orders may also find palliation in their community. Cooperation between all caregivers benefit the child and family.
Davis KG
Pediatric Clinics Of North America
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Pediatr Clin North Am.
Hearing the voices of children diagnosed with a life-threatening or life-limiting illness and their parents' accounts in a palliative care setting: A qualitative study
Children; palliative care; qualitative; experiences; life-limiting; life-threatening
BACKGROUND: Exploring children's experiences of a life-threatening or life-limiting diagnosis is essential in offering appropriate care for them. There have been few studies examining these and they are often from the parent's perspective. Even if adults are frequently unwilling to share information with children, they become aware of their diagnosis and prognosis. The theory of awareness contexts provided a theoretical framework through which it can be understood what children knew about their condition. AIM: To advance the understanding of the experiences of children with a life-threatening or life-limiting condition. DESIGN: A qualitative study using dyadic interviews and thematic analysis. SETTING/PARTICIPANTS: Ten children between 14 to 17 years old with a life-threatening or life-limiting illness who were supported by a palliative care service in Romania. Interviews were also undertaken with their mothers. RESULTS: Interview data demonstrated that there was a gap in the child's experience and understanding of their condition compared to their parents. The data produced six major themes: awareness of the illness, death and dying, the spiritual response to illness, the emotional response to illness, striving for normality and independence and coping strategies. The study showed that children can read subtle cues or they may talk with other children to learn about their illness when information is not openly available to them. CONCLUSIONS: Children in the study often know more about their condition than their parents realised. Using this understanding, healthcare professionals can advise parents and children about how to communicate with one another which would enable the children to give voice to their thoughts, emotions and experiences.
Ciobanu E; Preston N
Palliative Medicine
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/02692163211000238" target="_blank" rel="noreferrer noopener">10.1177/02692163211000238</a>
Development of the Dutch Structure for Integrated Children's Palliative Care
family; life-limiting; integrated care; life-threatening; care network; children’s palliative care; homecare; paediatric palliative care team
Children's palliative care (CPC) is gaining attention worldwide, facilitated by the exchange of knowledge during regular specialised congresses. This article describes the developments in the Netherlands over the past 15 years. The Foundation for Children's Palliative Expertise (PAL) was established as a nationwide initiative committed to improving palliative care for children countrywide. This led to the development of the first hospital-based CPC team in 2012, which expanded to a total of seven teams adjacent to children's university hospitals. Regional networks for CPC were developed in parallel to these teams from 2014 onwards. The networks are a collaboration of professionals from different disciplines and organisations, from hospital to homecare, and have covered the aspects of CPC nationally from 2019 onwards. They are connected through the Dutch Knowledge Centre for CPC. This centre was established in 2018 by the PAL Foundation in collaboration with the Dutch Association for Pediatrics. In 2013, the first evidence-based guideline, 'palliative care for children', provided access to knowledge for parents and healthcare providers, and in 2017, a format for an individual palliative care plan was established. Within the Knowledge Centre for CPC, a physician's support centre for dilemma's regarding the end of life of children was set up. The efforts to have children's palliative care embedded in the regular Dutch health care insurance are ongoing.
Vallianatos S; Huizinga CSM; Schuiling-Otten MA; Schouten-van Meeteren AYN; Kremer LCM; Verhagen AAE
Children
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children8090741" target="_blank" rel="noreferrer noopener">10.3390/children8090741</a>