Components of Perinatal Palliative Care: An Integrative Review
Palliative Care
When a severe diagnosis is made before or after birth, perinatal palliative care (PPC) can be provided to support the infant, parents and involved healthcare providers. An integrative and systematic overview of effectiveness and working components of existing PPC programs was needed. An integrative search was conducted in MEDLINE, Embase, CENTRAL, CINAHL, PsycInfo and Web of Science. Study designs examining the effect of PPC compared to regular care, and (empirical) articles describing the components of care included in existing PPC initiatives were included. Three independent authors reviewed titles, abstracts and full texts against eligibility criteria. PRISMA guidelines were followed; 21.893 records were identified; 69 publications met inclusion criteria. Twelve publications (17.4%) discussed the effect of a PPC program. Other publications concerned the description of PPC programs, most often by means of a program description (22/69; 31.9%), guidelines (14/769; 20.3%) or case study (10/69; 14.5%). Outcome measures envisioned four main target categories: care coordination, parents and family members, care for the fetus/neonate and healthcare providers. No trials exist to date. Analysis of working components revealed components related to changes directed to the policy of the hospital wards and components involving actual care being provided within the PPC program, directed to the fetus or infant, the family, involved healthcare providers or external actors. PPC is a growing research field where evidence consists mainly of descriptive studies and guidelines. The extensive list of possible PPC components can serve as a checklist for developing future initiatives worldwide. PPC includes several important actors: the fetus/infant and their family and included healthcare providers on both maternity and neonatal wards. This leads to a large variety of possible care components. However, while some studies show proof of concept, an evidence base to determine which components are actually effective is lacking.
Dombrecht L; Chambaere K; Beernaert K; Roets E; De Vilder DKM; De Smet G; Roelens K; Cools F
Children
2023
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="https://www.mdpi.com/2227-9067/10/3/482"><span>10.3390/children10030482</span></a>
Barriers and facilitators for parents in end-of-life decision-making for neonates at the Neonatal Intensive Care Unit: A qualitative study
decision making; emotional regulation; intensive care units; neonatal; Neonatology; parents; qualitative research
BACKGROUND: Mortality and end-of-life decision-making can occur in newborns, especially within the Neonatal Intensive Care Unit. For parents, participating in end-of-life decision-making is taxing. Knowledge is lacking on what support is helpful to parents during decision-making. AIM: To identify barriers and facilitators experienced by parents in making an end-of-life decision for their infant. DESIGN: Qualitative study using face-to-face semi-structured interviews. SETTING/PARTICIPANTS: We interviewed 23 parents with a child that died after an end-of-life decision at a Neonatal Intensive Care Unit between April and September 2018. RESULTS: Parents stated barriers and facilitators within 4 themes: 1. Clinical knowledge and prognosis; 2. Quality of information provision; 3. Emotion regulation; and 4. Psychosocial environment. Facilitators include knowing whether the prognosis includes long-term negative quality of life, knowing all treatment options, receiving information according to health literacy level, being able to process intense emotions, having experienced counseling and practical help. Barriers include a lack of general medical knowledge, being unprepared for a poor prognosis, having an uninformed psychologist. CONCLUSIONS: We found that clinical information and psychosocial support aid parents in decision-making. Information is best tailored to health literacy. Psychosocial support can be provided by experienced, informed counselors, social services and sibling support, distinguishing between verbal and non-verbal coping preferences, and calm, familiar architecture. Intense emotions may hinder absorption of clinical information, therefore interventions to aid emotion regulation and reduce cognitive load may be looked at in further research. Adjustment of the Situations, Opinions and Options, Parents, Information, Emotions framework based on our results can be evaluated.
Piette V; Dombrecht L; Deliens L; Cools F; Chambaere K; Goossens L; Naulaers G; Laroche S; Cornette L; Bekaert E; Decoster P; Beernaert K; Cohen J
Palliative Medicine
2022
<a href="http://doi.org/10.1177/02692163221076365" target="_blank" rel="noreferrer noopener">10.1177/02692163221076365</a>
Neonatologists and neonatal nurses have positive attitudes towards perinatal end-of-life decisions, a nationwide survey
Surveys and Questionnaires; Newborn Infant; Pregnancy; Attitude of Health Personnel; Decision Making; Belgium; Terminal Care; Perinatal death; End-of-life decisions; Death; Termination of pregnancy; Neonatologists; Optimism; Attitude questionnaire; Attitudes of neonatologists and neonatal nurses; Neonatal Nurses
AIM: Perinatal death is often preceded by an end-of-life decision (ELD). Disparate hospital policies, complex legal frameworks and ethically difficult cases make attitudes important. This study investigated attitudes of neonatologists and nurses towards perinatal ELDs. METHODS: A survey was handed out to all neonatologists and neonatal nurses in all eight neonatal intensive care units in Flanders, Belgium in May 2017. Respondents indicated agreement with statements regarding perinatal ELDs on a Likert-scale and sent back questionnaires via mail. RESULTS: The response rate was 49.5% (302/610). Most neonatologists and nurses found nontreatment decisions such as withholding or withdrawing treatment acceptable (90-100%). Termination of pregnancy when the foetus is viable in cases of severe or lethal foetal problems was considered highly acceptable in both groups (80-98%). Physicians and nurses do not find different ELDs equally acceptable, e.g. nurses more often than physicians (74% vs 60%, p = 0.017) agree that it is acceptable in certain cases to administer medication with the explicit intention of hastening death. CONCLUSION: There was considerable support for both prenatal and neonatal ELDs, even for decisions that currently fall outside the Belgian legal framework. Differences between neonatologists' and nurses' attitudes indicate that both opinions should be heard during ELD-making.
Dombrecht L; Deliens L; Chambaere K; Baes S; Cools F; Goossens L; Naulaers G; Roets E; Piette V; Cohen J; Beernaert K
Acta Paediatrica
2020
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/10.1111/apa.14797" target="_blank" rel="noreferrer noopener">10.1111/apa.14797</a>
A post-mortem population survey on foetal-infantile end-of-life decisions: a research protocol
Neonates; End-of-life decisions; Mortality follow-back survey; Population-based; Stillbirths; Termination of pregnancy
BACKGROUND: The death of a child before or shortly after birth is frequently preceded by an end-of-life decision (ELD). Population-based studies of incidence and characteristics of ELDs in neonates and infants are rare, and those in the foetal-infantile period (> 22 weeks of gestation - 1 year) including both neonates and stillborns, are non-existent. However, important information is missed when decisions made before birth are overlooked. Our study protocol addresses this knowledge gap. METHODS: First, a new and encompassing framework was constructed to conceptualise ELDs in the foetal-infantile period. Next, a population mortality follow-back survey in Flanders (Belgium) was set up with physicians who certified all death certificates of stillbirths from 22 weeks of gestation onwards, and infants under the age of a year. Two largely similar questionnaires (stillbirths and neonates) were developed, pilot tested and validated, both including questions on ELDs and their preceding decision-making processes. Each death requires a postal questionnaire to be sent to the certifying physician. Anonymity of the child, parents and physician is ensured by a rigorous mailing procedure involving a lawyer as intermediary between death certificate authorities, physicians and researchers. Approval by medical societies, ethics and privacy commissions has been obtained. DISCUSSION: This research protocol is the first to study ELDs over the entire foetal-infantile period on a population level. Based on representative samples of deaths and stillbirths and applying a trustworthy anonymity procedure, the research protocol can be used in other countries, irrespective of legal frameworks around perinatal end-of-life decision-making.
Dombrecht L; Beernaert K; Roets E; Chambaere K; Cools F; Goossens L; Naulaers G; De Catte L; Cohen J; Deliens L
BMC Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1186/s12887-018-1218-4" target="_blank" rel="noreferrer noopener">10.1186/s12887-018-1218-4</a>
Medical end-of-life decisions in neonates and infants in Flanders
Euthanasia; Non-U.S. Gov't; PedPal Lit; decision making; Withholding Treatment/statistics & numerical data; 48.9-64.0). Lethal drugs were administered in 15 cases among 117 early neonatal deaths and in two cases among 77 later deaths (13%vs 3%; 70.1-85.5) of the 121 physicians thought that their professional duty sometimes includes the prevention of unnecessary suffering by hastening death and 69 (58%; 95% CI 70.4-82.4) of the 253 deaths studied; Active/psychology/statistics & numerical data Female Humans Infant Infant; and such a decision was made in 14 3 cases (57%; Attitude of Health Personnel Belgium; Newborn Male Pain/therapy Palliative Care/statistics & numerical data Physicians/; p=0.018). The attitude study showed that 95 (79%; psychology Questionnaires Research Support
2005
Provoost V; Cools F; Mortier F; Bilsen J; Ramet J; Vandenplas Y; Deliens L
Lancet
2005
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).
Journal Article
<a href="http://doi.org/10.1016/s0140-6736(05)61028-8" target="_blank" rel="noreferrer">10.1016/s0140-6736(05)61028-8</a>
Consultation of Parents in Actual End-Of-Life Decision-Making in Neonates and Infants
Critical Illness/th [Therapy]; Decision Making; Parents/px [Psychology]; Terminal Care; Belgium; gestational age; Humans; infant; Infant Newborn; Life Support Care/px [Psychology]; Medical Futility/px [Psychology]; Physician-Patient Relations; retrospective studies; Surveys and Questionnaires; Terminal Care/px [Psychology]; Withholding Treatment
The objective of this study was to assess how frequently end-of-life decisions (ELDs) with a possible or certain life-shortening effect in neonates and infants were discussed with parents, and to determine if consultation of parents was associated with the type of ELD, (clinical) characteristics of the patient, and socio-demographic characteristics of the physician. A retrospective study of all deaths of live born infants under the age of one year was conducted in Flanders, Belgium. For 292 of all 298 deaths in a 1-year period (between 1 August 1999 and 31 July 2000) the attending physician could be identified and was sent an anonymous questionnaire. All cases with an ELD and containing information regarding the consultation of parents were included. The response rate was 87% (253/292). In 136 out of 143 cases, an ELD was made and information on the consultation of parents was obtained. According to the physician, the ELD was discussed with parents in 84% (114/136) of cases. The smaller the gestational age of the infant, the more the parental request for an ELD was explicit (p=0.025). When parents were not consulted, the ELD was based more frequently on the fact that the infant had no chance to survive and less on quality-of-life considerations (p=0.001); the estimated shortening of life due to the ELD was small in all cases, but significantly smaller (p<0.001) if parents were not consulted. It is concluded that the majority of parents of children dying under the age of one year are consulted in ELD-making, especially for decisions based on quality-of-life considerations (95.1%). Parents of infants with a small gestational age more often explicitly requested an ELD.
Provoost V; Cools F; Deconinck P; Ramet J; Deschepper R; Bilsen J; Mortier F; Vandenplas Y; Deliens L
European Journal Of Pediatrics
2006
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/10.1007/s00431-006-0190-4" target="_blank" rel="noreferrer noopener">10.1007/s00431-006-0190-4</a>
The use of drugs with a life-shortening effect in end-of-life care in neonates and infants
Analgesics Opioid; Euthanasia; Muscle Relaxants Central; Potassium Chloride; Practice Patterns Physicians'; Terminal Care; 0 (analgesics Opioid); 0 (muscle Relaxants Central); 660yq98i10 (potassium Chloride); Belgium; Decision Making; Drug Utilization; Humans; Infant; Infant Newborn; Intention; Pain/dt [drug Therapy]; Terminal Care/es [ethics]
OBJECTIVE: The purpose was to describe the use of drugs with a possible or certain life-shortening effect in end-of-life care in infants and to evaluate the possibly lethal effect. DESIGN: For 292/298 deaths of live born infants (<1 year), in a 1-year period (between 1 August 1999 and 31 July 2000) in Flanders, Belgium, the attending physician could be identified and was sent an anonymous questionnaire. The questionnaires relating to deaths directly preceded by the administration of drugs were reviewed by a multi-disciplinary panel. RESULTS: The response rate was 86.6% (253/292). In 57 cases (22.5%), drugs were administered directly before death. In 17/57 cases, the physician explicitly intended to hasten death. In 16/17 cases information about the drug(s) was available: opioids were administered in 14, a muscle relaxant in 5 and potassium chloride in 3 cases. In 13 cases where the lethal effect could be evaluated, the panel judged that the drugs were effective in hastening death in 10 cases. In most cases the estimated life-shortening was <24 h. In 40/57 cases the physician administered drugs to alleviate pain and/or symptoms, taking into account a possible life-shortening effect without explicitly intending it. Opioids were administered in all 30 cases where information about the drug(s) was supplied. In 13 cases the lethal effect could be evaluated, and in 6 cases the panel judged that the drugs had hastened death. CONCLUSIONS: When life-shortening was explicitly intended, (dosages of) drugs were likely to be lethal. Drugs administered also clearly hastened death in some cases where life-shortening was not explicitly intended.
Provoost V; Cools F; Bilsen J; Ramet J; Deconinck P; Vander Stichele R; Vande Velde A; Van Herreweghe I; Mortier F; Vandenplas Y; Deliens L
Intensive Care Medicine
2006
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/10.1007/s00134-005-2863-2" target="_blank" rel="noreferrer">10.1007/s00134-005-2863-2</a>