Palliative and End-of-Life Care for Newborns and Infants

Catlin, Anita; Brandon, Debra; Wool, Charlotte; Mendes, Joana

doi:10.1097/anc.0000000000000215

Cited by 31 publications

(14 citation statements)

References 3 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Care providers from various care settings and specialty areas can be involved in the delivery of perinatal palliative care, making communication among these teams integral to ensuring the families' goals of care are discussed and documented, and a consistent approach to care is provided. 2,[5][6][7][8][9] There is limited empirical evidence to inform perinatal palliative care practice, and further research is needed to better understand and develop effective models of care, which can inform program development. 1,10,11 No published comprehensive tools have been found which assess health-care provider's competency, attitudes, and knowledge in providing palliative care to the perinatal population.…”

Section: Introductionmentioning

confidence: 99%

Development and Implementation of a Survey to Assess Health-Care Provider’s Competency, Attitudes, and Knowledge About Perinatal Palliative Care

et al. 2018

View full text Add to dashboard Cite

Perinatal palliative care is an emerging area of health care. To date, no published tools assess health-care provider's knowledge and level of comfort in providing such care. A 2-phase study was undertaken to develop and implement a survey to evaluate the self-assessed competency, attitudes, and knowledge of health-care providers working in perinatal palliative care. Phase 1 included a review of the literature and appraisal of palliative and death-related instruments to inform the initial draft of the Perinatal Palliative Care Survey (PPCS). Twenty-four Canadian pediatric palliative care specialists critiqued the PPCS, establishing its face and content validity. Phase 2 involved administering the PPCS at 4 sites across Canada, resulting in 167 responses from nurses, physicians, and midwives. The majority of participants responded that they possessed a degree of comfort in providing perinatal palliative care, particularly with assessing pain (76%), managing pain (69%), assessing other symptoms (85%), and managing other symptoms (78%). Two areas where participants level of confidence or extreme confidence was diminished included having conversations with families about the possibility of their infant dying (55%) and knowing and accessing community palliative care resources (32%). Responses in the knowledge section identified gaps related to opioid use, pharmacological interventions for breathlessness, pain behaviors, and tolerance developed to opioids and sedatives. Eighty-six percent of respondents stated that if education about palliative care was made available, they would participate with priority topics identified as communication with families (75%), managing symptoms (69%), pain management (69%), and ethical issues (66%). The PPCS provides a useful assessment to determine the educational needs of health-care providers delivering perinatal palliative care.

show abstract

Section: Introductionmentioning

confidence: 99%

Development and Implementation of a Survey to Assess Health-Care Provider’s Competency, Attitudes, and Knowledge About Perinatal Palliative Care

et al. 2018

View full text Add to dashboard Cite

show abstract

“…That's why it is so difficult for them to "give up" on them and why they use all the means they have at their disposal to try and save the NB's life. On the other hand, NPC own philosophy states that this kind of care should start in addition to curative care and should be increased when the curative objective is no longer appropriate (11)(12)18) . We found out that most health professionals recognize that NPC aims at preventing and soothing newborns' suffering and at increasing their quality of life while they are still alive and providing them with a painless death.…”

Section: Discussionmentioning

confidence: 99%

“…We found out that most health professionals recognize that NPC aims at preventing and soothing newborns' suffering and at increasing their quality of life while they are still alive and providing them with a painless death. Some of them also seem to value the care provided to the parents (11,24) . In fact, communication with parents may be more stressful than the effective provision of care for newborn infants in a end-of-life situation (12) , but parental care represents an ethical value included in the principle of patient autonomy in which any decision has to be discussed with parents, in accordance with their beliefs and culture, and includes the design of an individualized care plan (25) .…”

Section: Discussionmentioning

confidence: 99%

“…NPC will also provide the adequate support to the fetus/newborn and family, honouring them with due respect and dignity (5) . They may, at an early stage, be applied in addition to curative care and be more evident when the curative objective is no longer appropriate and the intention is to prevent and relieve newborns' suffering and the pain endured by families and increase their quality of life while they are still alive and as they face imminent death (7)(8)(9)(10)(11) . In the case of newborns who are close to death, the objective is to help them have a "good death", always maintaining a deep respect for human dignity (1,6,12) .…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Perception of health professionals about neonatal palliative care

Silva¹,

Silva

Silva³

2019

Rev. Bras. Enferm.

View full text Add to dashboard Cite

Objective: To identify the perception of health professionals about neonatal palliative care. Method: A phenomenological qualitative study, a non-probabilistic sample, of 15 health professionals from a neonatal intensive care unit in northern Portugal. Content analysis was performed. Results: Despite their lack of training in palliative care, the health professionals showed concern for the dignity, quality of life and comfort of the newborn and family. They expressed emotional and relational difficulties in following the trajectories of serious illness and death and in the ethical decisions regarding the end-of-life. Conclusion: It is emphasized that professionals are sensitive to pain and suffering and reveal dedicated and committed in the care of the newborn and family. They are available to train and embrace the current challenges posed by the constitution of pediatric palliative care teams and to help achieve an organizational culture that advances in such care.

show abstract

“…It is particularly between weeks 22 to 25 of gestation - the limit of viability, when shared decision-making with parents concerning intensive and comfort care options is at stake. The intensive care options include the application of surfactant therapy, intubation, and supportive ventilation, while comfort care options aim at improving an infant’s quality of life (QoL), treating symptoms, and minimizing pain and suffering [5].…”

Section: Introductionmentioning

confidence: 99%

Decision-making at the limit of viability: the Austrian neonatal choice context

Stanak

Hawlik

2019

BMC Pediatr

View full text Add to dashboard Cite

Background We aimed to explore the shared decision-making context at the limit of viability (weeks 22–25 of gestation) through analyzing neonatologist’s communication strategies with parents and their possible impact on survival and neurodevelopmental impairment (NDI) outcomes. Methods A mixed methods approach was applied where a systematic literature search and in-depth semi-structured interviews with five heads of neonatology departments and one clinical ethicist from the Austrian context were integrated into a literature review. The aim was to identify decision practice models and the choice context specific to Austria. Results Professional biases, parental understanding, and the process of information giving were identified as aspects possibly influencing survival and NDI outcomes. Institutions create self-fulfilling prophecies by recommending intensive/palliative care based upon their institutional statistics, yet those vary considerably among high-income countries. Labelling an extremely preterm (EP) infant by the gestational week was shown to skew the estimates for survival while the process of information giving was shown to be subject to framing effect and other cognitive biases. Conclusion Communication strategies of choice options to parents may have an impact on the way parents decide and hence also on the outcomes of EP infants.

show abstract

Palliative and End-of-Life Care for Newborns and Infants

Cited by 31 publications

References 3 publications

Development and Implementation of a Survey to Assess Health-Care Provider’s Competency, Attitudes, and Knowledge About Perinatal Palliative Care

Development and Implementation of a Survey to Assess Health-Care Provider’s Competency, Attitudes, and Knowledge About Perinatal Palliative Care

Perception of health professionals about neonatal palliative care

Decision-making at the limit of viability: the Austrian neonatal choice context

Contact Info

Product

Resources

About