Muslim perspectives on palliative care in perinatal and neonatal patients: a mini-review
Infant, Newborn; Palliative Care; neonatal; perinatal; palliative; withdrawal; Dnr; end-of life; islam; muslim
Muslims comprise nearly a quarter of the worldwide population, with significant populations in the United States, Canada, and Europe. As clinicians, it is important to be familiar with Islamic religious and cultural perspectives on medical treatment, life-prolonging measures and comfort and palliative care, but historically, this has been a gap in the literature. Recently, there have been multiple papers discussing Islamic bioethics, particularly in regards to end of life care in adults; however, there has been a lack of literature discussing the Islamic perspective on issues related to neonatal and perinatal end of life care. This paper uses clinical scenarios to review key relevant principles of Islamic law, discussing the primary and secondary sources used in formulating fatawa, including the Quran, hadith, qiyas, and 'urf, and the importance of preservation of life and upholding of human dignity (karamah). Neonatal and perinatal scenarios are used to specifically explore the Islamic perspective on withholding and withdrawal of life-sustaining measures and determining what constitutes an acceptable quality of life. In some Islamic cultures the expertise of the patient's physician is given significant weight in making these judgments, and as such, families may appreciate frank assessment of the situation by the clinical team. Because of the various factors involved in issuing religious ruling, or fatwa, there is a wide spectrum of opinions on these rulings, and physicians should be aware of these differences, seek counsel and guidance from local Islamic leaders, and support families in their decision-making process.
Shoaib AB; Vawter-Lee M; Venkatesan C; Soliman AF
Frontiers in Pediatrics
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="http://doi.org/10.3389/fped.2023.1204941" target="_blank" rel="noreferrer noopener">10.3389/fped.2023.1204941</a>
Lasting Legacy: Maternal Perspectives of Perinatal Palliative Care
Female; Fetal mortality; hospice; Infant; mothers; Newborn; palliative care; perinatal; Perinatal Care organization & administration; prenatal; Prenatal Diagnosis; Retrospective Studies
BACKGROUND: Many of the leading causes of infant mortality are diagnosed prenatally, presenting providers with the ability to present perinatal palliative care planning as an option. OBJECTIVE: Our study adds to the literature both by describing infant interaction with the health care system and by gaining deeper understanding of the maternal experience after being offered perinatal palliative care. METHODS: The study was conducted at a public university-based medical center in the Midwest. Phase 1 consisted of a retrospective review of electronic medical records of 27 mother-infant pairs offered perinatal palliative care, 18 of whom elected to develop a perinatal palliative care. Phase 2 consisted of a focus group and interviews of seven of the mothers. RESULTS: In the initial phase of this study, results revealed differences regarding the infant's end-of-life trajectory, including location of death, number of invasive procedures, and death in the setting of withholding versus withdrawing life-sustaining treatment. Highlighting that without a perinatal palliative care plan in place, the default treatment for infants with prenatally diagnosed life-limiting conditions is likely to be invasive and painful with often times minimal likelihood of long-term survival. Analysis of interview and focus group data revealed three themes: care, choice, and legacy. CONCLUSION: The authors used their experience with the health care system to draw implications for practice from the focus group and interview data, which care can serve to promote women feeling cared for and cared about, as well as promote opportunities for hope during a fragile pregnancy.
Kamrath HJ; Osterholm E; Stover-Haney R; George T; O'Connor-Von S; Needle J
Journal of Palliative Medicine
2019
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<a href="http://doi.org/10.1089/jpm.2018.0303" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0303</a>
An ethical rationale for perinatal palliative care
end-of-life; Neonatology; Palliative Care; Ethics; Perinatal
Perinatal palliative care has grown out of both an historical necessity in attending to babies in the NICU that face difficult odds of survival, the increasing technology that may avail life-extending, yet technology-dependent, care, and the growth of fetal diagnostic and treatment centers. This review looks ta the history and ethical rationale for making available services from Pediatric and Perinatal Palliative Care to families in the prenatal and postnatal periods caring for a loved one with life-limiting circumstances.
Carter BS
Seminars in Perinatology
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/10.1016/j.semperi.2021.151526" target="_blank" rel="noreferrer noopener">10.1016/j.semperi.2021.151526</a>
Individualised decision making: interpretation of risk for extremely preterm infants-a survey of UK neonatal professionals
ethics; neonatology; perinatal; preterm; resuscitation
BACKGROUND: The British Association of Perinatal Medicine (BAPM) published a revised framework for perinatal management of extremely preterm infants (EPIs) in 2019. We aimed to assess UK neonatal professionals' interpretation of elements of this framework, as well as the consistency of their estimates of outcome for EPIs. METHOD(S): An online survey gave participants five cases involving anticipated extremely preterm birth with different favourable and unfavourable risk factors. Respondents were asked to assign a risk category and management option using the BAPM framework and to estimate the chance of survival if the baby received active resuscitation and the chance of severe disability if they survived. RESULT(S): Respondents were consistent in interpretation of risk categories. The majority would follow parental wishes about management. Management decisions did not always correspond with risk assessment, with less inclination to recommend palliative (comfort) care. There were wide estimates of survival or severe disability (5%-90%) with consultants providing lower estimates of severe disability than other groups. CONCLUSION(S): UK neonatal professionals deferred to parental wishes in the cases presented, indicating an emphasis on shared decision making. However, they did not necessarily use the risk stratification approach for management decisions. Variation in estimates of outcome raises questions about the accuracy of informed decision making and suggests support is needed for UK clinicians to incorporate risk factors into individualised counselling. There may be value in validating existing online risk calculators for UK infants or in developing a UK specific risk model. Copyright © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.
Wood K; Di Stefano LM; Mactier H; Bates SE; Wilkinson D
Archives of disease in childhood
2021
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<a href="http://doi.org/10.1136/archdischild-2021-322147" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2021-322147</a>
Outcomes following perinatal palliative care consultation: a retrospective review
paediatrics; palliative care; perinatal; quality of life
Objective: To inform clinical practice by describing a model of perinatal palliative care delivery within a fully staffed fetal health center (FHC) inside a freestanding children's hospital. Study design: The team conducted a retrospective chart review of the palliative care team (PaCT) database from FHC's inception in 2010 to 31 December, 2018, and surveyed the FHC neonatologists. Result(s): PaCT consults in the FHC increased from 1 in 2010 to 102 in 2018. PaCT met 430 mothers for prenatal consultation. Of the 390 live-born infants, 172 died; 48 received comfort care only from birth; and 19 survived to discharge home with hospice. At the time of review, PaCT still follows 109 children met prenatally. PaCT discharged 96 patients that no longer required PaCT services. Conclusion(s): PaCT provides an integral service within the FHC as evidenced by the increasing volume of consultations, variety of care provided and perceived value by FHC neonatologists. Copyright © 2021, The Author(s), under exclusive licence to Springer Nature America, Inc. part of Springer Nature.
Tucker MH; Ellis K; Linebarger J
Journal of Perinatology.
2021
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<a href="http://doi.org/10.1038/s41372-021-00966-2" target="_blank" rel="noreferrer noopener">10.1038/s41372-021-00966-2</a>
Neonatal and perinatal palliative care pathway: A tertiary neonatal unit approach
palliative care; neonatology; perinatal; bereavement; care pathway
A lack of well-structured guideline or care pathway results in inadequate, inconsistent and fragmented palliative care (PC) for babies and their families. The impact on the families could be emotionally and psychologically distressing. Not all neonatal units have specialist PC clinicians or teams, and such units will benefit from a well-planned perinatal PC pathway. In this article, we discuss a tertiary neonatal unit perinatal care pathway which provides guidance from the point of diagnosis and establishment of eligibility of a baby for PC through to care after death and bereavement support for families. Planning PC with families which encourages family-centred and individualised approach is also discussed. Copyright © 2021 BMJ Publishing Group. All rights reserved.
Akyempon AN; Aladangady N
BMJ Paediatrics Open
2021
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<a href="http://doi.org/10.1136/bmjpo-2020-000820" target="_blank" rel="noreferrer noopener">10.1136/bmjpo-2020-000820</a>
Effectiveness of utilizing the WHO safe childbirth checklist on improving essential childbirth practices and maternal and perinatal outcome: A systematic review and meta-analysis
World Health Organization; perinatal; systematic review; meta-analysis; outcomes; WHO; childbirth
INTRODUCTION: The World Health Organization (WHO) Safe Childbirth Checklist (SCC) is a 29-item checklist based on essential childbirth practices to help health-care workers to deliver consistently high quality maternal and perinatal care. The Checklist was intended to reduce maternal and perinatal mortality and address the primary cause of maternal death, intrapartum stillbirth, and early neonatal death. The objective of this review was to locate international literature reporting on the effectiveness of utilizing the WHO safe childbirth checklist on improving essential childbirth practices, early neonatal death, stillbirth, maternal mortality, and morbidity. METHODS: We searched MEDLINE, google scholar, Cochrane Central Register of Controlled Trials (CENTRAL), met-Register of Controlled Trials (m-RCT) (www.controlled-trials.com), ClinicalTrials.gov (www.clinicaltrials.gov) and the WHO International Clinical Trials Registry Platform (ICTRP) (www.who.int/stop/search/en) to retrieve all available comparative studieshttp://www.opengrey.eu/ published in English after 2008. Two reviewers did study selection, critical appraisal, and data extraction independently. We did a random or fixed-effect meta-analysis to pool studies together and effect estimates were expressed as an odds ratio. Quality of evidence for major outcomes was assessed using the Grading of Recommendations, Assessment, development, and evaluation(GRADE). RESULTS: We retained three cluster randomized trials and six pre-and-post intervention studies reporting on WHO SCC's. The WHO SCC utilization improved quality of preeclampsia management(moderate quality of evidence) (OR = 7.05 [95% CI 2.34-21.29]), maternal infection management(moderate quality of evidence) (OR = 7.29[95%CI 2.29-23.27]), Partograph utilization(moderate quality of evidence) (OR = 3.81 [95% 1.72-8.43]), postpartum counselling(low quality of evidence) (RR = 132.51[95% 49.27-356.36]) and still birth(moderate quality of evidence) (OR = 0.92[95% CI 0.87-0.96]). However, the utilization of the checklist had no impact on early neonatal death (very low quality of evidence) (OR = 1.07[95%CI [1.01-1.13]) and maternal death (low quality of evidence) (OR = 1.06[95% CI 0.77-1.45]). CONCLUSIONS: Moderate quality of evidence indicates that WHO SCC utilization is effective in reducing stillbirth and Improving preeclampsia management, maternal infection management and partograph utilization Low quality of evidence indicates that WHO SCC is effective in enhancing postpartum danger sign counseling. Low and very low quality of evidence suggests that WHO SCC has no impact on maternal and early neonatal death, respectively.
Tolu L B; Jeldu W G; Feyissa G T
PLoS One
2020
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<a href="http://doi.org/10.1371/journal.pone.0234320" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0234320</a>
Fostering Vicarious Resilience for Perinatal Palliative Care Professionals
grief; ethical; burnout; perinatal; palliative; self-care; compassion; resiliency
Background: The demands on healthcare professionals caring for families grappling with a life-limiting condition in an unborn or newly born child can be overwhelming. Clinicians working in emergency/trauma, hospice, and pediatric settings are already at high risk for burnout and compassion fatigue, which can leave healthcare institutions increasingly vulnerable to poor retention, absenteeism, and waning quality of care. The provision of exemplary palliative care requires a cohesive interdisciplinary team of seasoned professionals resilient to daily challenges. In September 2019, the American College of Gynecology, in a committee opinion, published standard of care guidelines for perinatal palliative care. This has created an impetus for exceptional caregiving and a greater demand for both physician and interdisciplinary healthcare provider education, training, and ongoing support that promotes truly beneficent care for pregnant patients confronted with life-limiting fetal conditions. Methods: A scoping review of the research literature was conducted in order to distinguish the barriers and facilitators of professional resiliency in perinatal palliative care. PubMed, Medline, CINAHL, and EBSCO Psychology & Behavioral Sciences Collections were systematically reviewed. Because of the paucity of studies specific to perinatal palliative care, several interviews of nurses and physicians in that field were conducted and analyzed for content distinctly pertaining to personal practices or workplace factors that support or hinder professional resiliency. Results: The research indicated that medical professionals often cite a lack of knowledge, inexperience using effective communication skills related to perinatal palliative care and bereavement, challenges with interdisciplinary collaboration, misconceptions about the role and function of palliative care in the perinatal or neonatal settings, moral distress, and workload challenges as encumbrances to professional satisfaction. Strategic implementation of facility-wide bereavement care training, effective communication modalities, and evidenced-based practical applications are critical components for a thriving perinatal palliative care team. Authentic formal and informal debriefing, peer mentoring, adequate caseloads, robust provider self-care practices, exceptional relational efficacy, and cultural and spiritual humility can foster personal growth and even vicarious resilience for perinatal palliative care professionals. Conclusions: Support should be strategic and multifaceted. The onus to implement salient measures to cultivate resilience in the perinatal palliative caregiver should not be only upon the individuals themselves but also upon prevailing regulatory governing bodies and healthcare institutions.
Grauerholz KR; Fredenburg M; Jones PT; Jenkins KN
Frontiers in Pediatrics
2020
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<a href="http://doi.org/10.3389/fped.2020.572933" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.572933</a>
Assessment of Healthcare Professionals' Self-Perceived Competence in Perinatal/Neonatal Palliative Care After a 3-Day Training Course
competence; neonatal; palliative care; perinatal; training course
Background: Perinatal/neonatal palliative care (PNPC) offers a plan of care for improving the quality of life of infants when the prolongation of life is no longer the goal of care. The number of PNPC programs has increased in recent years, but training for clinicians has not kept pace. Therefore, an interdisciplinary team developed a 3-day intensive PNPC training course for physicians, nurses, and other healthcare professionals at Columbia University Irving Medical Center (CUIMC). Objective: The aim of this study was to assess the efficacy of a PNPC training course in improving the self-reported competence of participants. Study Design: A cross-sectional survey design was used to obtain data from 88 healthcare professionals who attended the PNPC training course. Data was collected using a validated questionnaire. The questionnaire included 32 items that queried participants about their self-assessed competence using a forced 1-4 Likert scale. The 32 items, which served as the outcome variables, were clustered into the eight domains of palliative care. The survey was administered through a web-based tool at the beginning and the conclusion of the course. Results: Results from two-sample t-tests comparing pre-test and post-test self-assessed competence were statistically significant for each item across disciplines. Additional analysis revealed that after participation in the training course, the statistically significant differences between physicians' and nurses' pre-course self-reported competence disappeared. Conclusion: The development of an evidence-based curriculum improved the self-reported competence of participants across disciplines, filled a specific gap in nurses' self-reported competence and addressed a global training need.
Hammond J; Wool C; Parravicini E
Frontiers in Pediatrics
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/10.3389/fped.2020.571335" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.571335</a>
Lasting Legacy: Maternal Perspectives of Perinatal Palliative Care
Infant; Humans; Female; palliative care; hospice; Retrospective Studies; Adult; Palliative Care/*organization & administration; perinatal; Prenatal Diagnosis; Mothers/*psychology; Newborn; Patient Care Planning/*organization & administration; prenatal; Fetal Diseases/diagnosis/*mortality; Perinatal Care/*organization & administration
BACKGROUND: Many of the leading causes of infant mortality are diagnosed prenatally, presenting providers with the ability to present perinatal palliative care planning as an option. OBJECTIVE: Our study adds to the literature both by describing infant interaction with the health care system and by gaining deeper understanding of the maternal experience after being offered perinatal palliative care. METHODS: The study was conducted at a public university-based medical center in the Midwest. Phase 1 consisted of a retrospective review of electronic medical records of 27 mother-infant pairs offered perinatal palliative care, 18 of whom elected to develop a perinatal palliative care. Phase 2 consisted of a focus group and interviews of seven of the mothers. RESULTS: In the initial phase of this study, results revealed differences regarding the infant's end-of-life trajectory, including location of death, number of invasive procedures, and death in the setting of withholding versus withdrawing life-sustaining treatment. Highlighting that without a perinatal palliative care plan in place, the default treatment for infants with prenatally diagnosed life-limiting conditions is likely to be invasive and painful with often times minimal likelihood of long-term survival. Analysis of interview and focus group data revealed three themes: care, choice, and legacy. CONCLUSION: The authors used their experience with the health care system to draw implications for practice from the focus group and interview data, which care can serve to promote women feeling cared for and cared about, as well as promote opportunities for hope during a fragile pregnancy.
Kamrath H J; Osterholm E; Stover-Haney R; George T; O'Connor-Von S; Needle J
Journal of Palliative Medicine
2019
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<a href="http://doi.org/10.1089/jpm.2018.0303" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0303</a>
Family Conferences in Prenatal Palliative Care
fetal malformation; palliative medicine; patient care; perinatal; qualitative research
Background: Fetal malformations are diagnosed prenatally in nearly 3% of pregnancies, and ~1.2% are major malformations. After prenatal diagnosis, it is imperative to consider families' values and to support their decision-making process. Prenatal palliative care is a growing field mainly based on family conferences. The prenatal care setting is unique and differs from postnatal and adult care. There are no descriptions of family conferences in prenatal palliative care. The descriptions of themes that emerge from the prenatal care conference charts may guide professionals in this delicate task, and help determine the causes of suffering and identify family values before the birth of the infant. Aim(s): To perform a content analysis of medical records of family conferences and to describe the main themes observed during prenatal palliative care follow-up after the diagnosis of a life-limiting fetal condition. Design(s): This is a retrospective study of medical records of family conferences from a perinatal palliative care group, the GAI group, between May 2015 and September 2016. Setting/Participants: Families with estimated perinatal mortality >50% and eligibility for follow-up at our tertiary fetal medicine center were enrolled. We included women who participated in at least one family conference with the GAI group and who had given birth at the clinic or delivered at another center and returned for the postnatal family conference. Result(s): Fifty women met the inclusion criteria. Five main themes and 18 categories emerged from the charts and are described in detail. A model of follow-up in prenatal palliative care is proposed based on the themes and categories identified. Conclusion(s): This analysis may guide health professionals who seek to better identify family needs and values and organize follow-up during prenatal palliative care.
Bernardes L S; Oliveira F F; Jesus R C A; Benute G R G; Gibelli M A B C; Nascimento N B; Bolibio R; Barbosa T V A; Setubal M S V; Gomes A L; Rocha L S N; Rosa G R; Francisco R P
Journal of Palliative Medicine
2020
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<a href="http://doi.org/10.1089/jpm.2019.0579" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0579</a>
Specialized Pediatric Palliative Care in Neonates with Life-Limiting Illness: A Systematic Review
life limiting; outcomes; palliative care; perinatal; teams
OBJECTIVE: The aim of this study is to assess the impact of specialized pediatric palliative care (PPC) on neonates with life-limiting conditions compared to standard care. STUDY DESIGN: MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase databases were searched from January 2000 to September 2018. Randomized clinical trials, experimental or observational studies, and secondary administrative database analyses published in English, Spanish, French, and German were included. Two independent reviewers extracted data, and used the Newcastle-Ottawa Scale and the Cochrane Risk of Bias Tool for quality analysis. Discrepancies were resolved as a team. RESULTS: From the 37,788 records obtained, only eight articles met the inclusion criteria. A meta-analysis was not possible due to the heterogeneity in how the outcomes were defined; however, a qualitative synthesis of the results was possible; organizing outcomes into eight different categories: psychological, social and spiritual support; communication; location of care; symptom management; bereavement care; predicted versus actual neonatal outcomes; and parental coping, stress, and satisfaction. CONCLUSION: Specialized versus may have an impact on neonates with life-limiting conditions and their families. More studies that evaluate the impact of specialized versus in neonates with sound statistical analysis is warranted.
Zuniga-Villanueva G; Widger K; Medeiros C; Trenholm M; Streuli J C
American Journal of Perinatology
2020
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<a href="http://doi.org/10.1055/s-0040-1710031" target="_blank" rel="noreferrer noopener">10.1055/s-0040-1710031</a>
Investigating factors associate to nurses' attitudes towards perinatal bereavement care
Attitude; Nurses; bereavement; perinatal
2008
Chan MF; Lou Feng-lan; Arthur DG; Cao Feng-lin; Wu LH; Li P; Sagara-Rosemeyer M; Chung L; Lui Li
Journal Of Clinical Nursing
2008
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Journal Article
<a href="http://doi.org/10.1111/j.1365-2702.2007.02007.x" target="_blank" rel="noreferrer">10.1111/j.1365-2702.2007.02007.x</a>
Gender differences in parental psychological distress following perinatal death or sudden infant death syndrome
Death; Syndrome; infant; Sudden Infant Death; gender; infant death; perinatal
1995
Vance JC; Boyle FM; Najman JM; Thearle MJ
British Journal Of Psychiatry
1995
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/10.1192/bjp.167.6.806" target="_blank" rel="noreferrer">10.1192/bjp.167.6.806</a>
Primary Palliative Care In Neonatal Intensive Care
Consultative; Neonatal; Nicu; Perinatal; Primary Palliative Care
Marc-Aurele K; English N
Seminars In Perinatology
2017
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10.1053/j.semperi.2016.11.005
Moving Toward A Shared Process: The Impact Of Parent Experiences On Perinatal Palliative Care
Decision Making; Neonatal; Palliative Care; Parent Experiences; Perinatal; Trisomy 13; Trisomy 18
Hasegawa SL; Fry JT
Seminars In Perinatology
2017
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).
10.1053/j.semperi.2016.11.002
Quality Indicators And Parental Satisfaction With Perinatal Palliative Care In The Intrapartum Setting After Diagnosis Of A Life-limiting Fetal Condition
Perinatal; State; Model; Program; Decisions; Prenatal-diagnosis; Nursing; Fetal Diagnosis; Palliative Care; Quality Indicators; Experiences; Measurement; Medical Care; Diagnosis; Health Aspects; Palliative Treatment; Fetal Diseases; Analysis; Quality Management; Pregnancy; Medical Diagnosis; Palliative Care; Parents & Parenting; Perception; Quality Of Care
Measurement of quality indicators (QIs) in perinatal palliative care has not been addressed. Parents who chose to continue pregnancy after a diagnosis of a life-limiting fetal condition described perceptions of quality care and their satisfaction with care. This research identified which QIs explained parental satisfaction. High QI scores are associated with parental satisfaction. Parents who were satisfied reported 2.9 times the odds that their baby was treated with dignity and respect and 3.4 times the odds their medical care was addressed. This research is a first step in developing a robust measure of QIs in perinatal palliative care.
Wool C; Black BP; Woods AB
Advances In Nursing Science
2016
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DOI: 10.1097/ANS.0000000000000147