Un an après la mort en couche de son second enfant, l'auteure tombe de nouveau enceinte. Elle raconte son combat pour faire le deuil de sa fille, Clotilde, ainsi que la peur ressentie à l'annonce de cette nouvelle grossesse.
Essentiellement destiné aux sages-femmes, ce guide permet de mieux accompagner la mère, mais aussi le père, dans les premiers temps d'un deuil périnatal puis, ultérieurement, pour une nouvelle grossesse. Il prend en compte la composante traumatique, longtemps négligée dans ce type de deuil.
Background: Fetal malformations are diagnosed prenatally in nearly 3% of pregnancies, and [about] 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: 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: 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.
Results: 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.
onclusions: This analysis may guide health professionals who seek to better identify family needs and values and organize follow-up during prenatal palliative care.
OBJECTIVE: Hypoplastic left heart syndrome is a single ventricle defect. While staged surgical palliative treatments have revolutionised care, patients with hypoplastic left heart syndrome continue to have significant morbidity and mortality. In 2017, the National Pediatric Cardiology Quality Improvement Collaborative recommended all single ventricle patients to receive a prenatal palliative care consult. This study aimed to elucidate provider perspectives on the implementation of prenatal palliative care consults for families expecting a child with hypoplastic left heart syndrome.
METHODS: An online survey was administered to obstetric and paediatric providers of relevant disciplines to assess their experience with palliative care involvement in hypoplastic left heart syndrome cases.
RESULTS: Nearly, all physicians (97%) and most registered nurses (79%) agreed that the initial palliative care consult for patients with hypoplastic left heart syndrome should occur during the prenatal period. Respondents also indicated that prenatal palliative care consults should also be offered in a variety of other CHD conditions. Participants believed positive aspects of this new referral protocol included an expanded support network for families, decreased family stress during the postnatal period, increased patient education about what to expect during the postnatal period, and continuity of care.
CONCLUSION: Multidisciplinary healthcare professionals believe that prenatal palliative care consults provide a variety of benefits for patients and families with hypoplastic left heart syndrome. Additional, multi-centre research is necessary to evaluate whether prenatal palliative care consults should become standard of care for families expecting a child with a single ventricle defect.
Palliative care (PC) teams are increasingly being called upon to provide care earlier and more remote from end of life. Because much of the field has grown out of hospice and geriatric care, most teams have little to no experience caring for pregnant women or their fetuses when serious or life-threatening illness strikes. This article, written by a team of oncologists (gynecologic, medical, and radiation) and PC providers, seeks to demystify the care of seriously ill pregnant women and their fetuses by exploring the diagnostic, treatment, prognostication, symptom management, and communication needs of these patients. Truly comprehensive PC extends throughout the life span, from conception to death, regardless of age. Accordingly, increased knowledge of the unique needs of these vulnerable groups will enhance our ability to provide care across this continuum.
BACKGROUND: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL).
OBJECTIVE: We piloted values clarification exercises to inform resuscitation decision making and qualitatively assess perceptions of QOL.
METHODS: We conducted a mixed-method study of women with threatened periviable delivery (22 0/7-24 6/7 weeks) and their important others (IOs). Participants engaged in three values clarification activities as part of a semi-structured interview-(a) Card sorting nine conditions as an acceptable/unacceptable QOL for a child; (b) Rating/ranking seven common concerns in periviable decision making (scale 0-10, not at all to extremely important); and (c) "Agreed/disagreed" with six statements regarding end-of-life treatment, disability, and QOL. Participants were also asked to define "QOL" and describe their perceptions of a good and poor QOL for their child. Analysis was conducted using SAS version 9.4 and NVivo 12.
RESULTS: All mild disabilities were an acceptable QOL, while two-thirds of participants considered long-term mechanical ventilation unacceptable. Although pregnant women rated "Impact on Your Physical/Mental Health" (average 5.6) and IOs rated "financial Concerns" the highest (average 6.6), both groups ranked "financial Concerns" as the most important concern (median 5.0 and 6.0, respectively). Most participants agreed that "Any amount of life is better than no life at all" (pregnant women 62.1%; IOs 75.0%) and disagreed that resuscitation would cause "Too much suffering" for their child (pregnant women 71.4%; IOs 80.0%). Half were familiar with the phrase "QOL". Although the majority described a good QOL in terms of emotional well-being (eg "loved", "happy", "supported"), a poor QOL was described in terms of functionality (eg "dependent" and "confined"). Additionally, financial stability emerged as a distinctive theme when IOs discussed poor QOL.
CONCLUSION: Our study offers important insights on parental perspectives in periviable decision making and potential values clarification tools for decision support.
L’objectif de l’étude était de décrire les pratiques des obstétriciens français face au choix des parents de poursuivre la grossesse après l’annonce d’une pathologie fœtale de particulière gravité, non curable. L’étude était une étude descriptive, transversale et nationale par questionnaires anonymes. La majorité des obstétriciens n’ont pas de formation spécifique en soins palliatifs ou éthique et ne disposent pas d’un protocole encadrant ces prises en charge, mais jugent ce document utile. Les obstétriciens jouent un rôle important dans ces situations.
BACKGROUND: There is no international consensus on the definition and components of severe maternal morbidity (SMM).
OBJECTIVES: To propose a comprehensive definition of SMM, to create an empirically justified list of SMM types and subtypes, and to use this to examine SMM in Canada.
METHODS: Severe maternal morbidity was defined as a set of heterogeneous maternal conditions known to be associated with severe illness and with prolonged hospitalisation or high case fatality. Candidate SMM types/subtypes were evaluated using information on all hospital deliveries in Canada (excluding Quebec), 2006-2015. SMM rates for 2012-2016 were quantified as a composite and as SMM types/subtypes. Rate ratios and population attributable fractions (PAF) associated with overall and specific SMM types/subtypes were estimated in relation to length of hospital stay (LOS > 7 days) and case fatality.
RESULTS: There were 22 799 cases of SMM subtypes (among 1 418 545 deliveries) that were associated with a prolonged LOS or high case fatality. Between 2012 and 2016, the composite SMM rate was 16.1 (95% confidence interval [CI] 15.9, 16.3) per 1000 deliveries. Severe pre-eclampsia and HELLP syndrome (514.6 per 100 000 deliveries), and severe postpartum haemorrhage (433.2 per 100 000 deliveries) were the most common SMM types, while case fatality rates among SMM subtypes were highest among women who had cardiac arrest and resuscitation (241.1 per 1000), hepatic failure (147.1 per 1000), dialysis (67.6 per 1000), and cerebrovascular accident/stroke (51.0 per 1000). The PAF for prolonged hospital stay related to SMM was 17.8% (95% CI 17.3, 18.3), while the PAF for maternal death associated with SMM was 88.0% (95% CI 74.6, 94.4).
CONCLUSIONS: The proposed definition of SMM and associated list of SMM subtypes could be used for standardised SMM surveillance, with rate ratios and PAFs associated with specific SMM types/subtypes serving to inform clinical practice and public health policy.
This is an evidence-based case study examining the process and outcome of 22 prenatal sessions and 1 postpartum follow-up session of psychodynamic therapy for a woman pregnant after a history of repeated pregnancy losses. Self-report measures of depression, anxiety, pregnancy-specific anxiety, prenatal attachment, trauma, and perinatal grief were completed prior to each session. A session quality item was completed after each session and a therapy outcome measure at termination and follow-up. The therapist and the patient completed an exit interview on the therapy relationship, which focused on moments of tension or misunderstanding, over the course of treatment. All sessions were transcribed and scored by certified raters for reflective functioning. Results suggest that the patient experienced reliable and clinically significant change on all pregnancy-specific measures, with most change happening in the early phase of treatment. However, general symptoms of depression and anxiety were variable and highly volatile over time. Exit interviews suggest that therapist empathy and validation were helpful in promoting change on pregnancy-specific symptoms, whereas problems or ruptures in the alliance may have been associated with a lack of change on general psychiatric symptoms. The patient showed little change on reflective functioning, perhaps contributing to ruptures in psychotherapy and lack of change on general psychiatric symptoms.
BACKGROUND: The objective of the study was to assess perinatal grief experienced after continuing pregnancy and comfort care in women diagnosed with lethal fetal condition compared with termination of pregnancy for fetal anomaly (TOPFA).
METHODS: This was a retrospective observational study which included women who chose to continue their pregnancy after the diagnosis of lethal fetal condition with comfort care support at birth at the Prenatal Diagnosis Center of Rennes Hospital from January 2007 to January 2017. Women were matched with controls who underwent TOPFA for the same type of fetal anomaly, gestational age at diagnosis and year. Women were evaluated by a questionnaire including the Perinatal Grief Scale.
RESULTS: There were 28 patients in the continuing pregnancy group matched with 56 patients in the TOPFA group. Interval between fetal loss and completion of questionnaire was 6±3 years. Perinatal grief score was similar at 61±22 vs 58±18 (p = 0.729) in the continuing pregnancy and TOPFA groups, respectively. Women in the TOPFA group expressed more guilt. The cesarean-section rate in the continuing pregnancy group was 25% .
CONCLUSION: Perinatal grief experienced by women opting for continuing pregnancy and comfort care after diagnosis of a potentially lethal fetal anomaly is not more severe than for those choosing TOPFA.
Termination of pregnancy after diagnosis of fetal anomaly (TOPFA) is a contested issue and stigma may negatively impact affected women's psychological reactions. This study examined the influence of perceived and internalized stigma on women's long-term adjustment to a TOPFA. One hundred forty-eight women whose TOPFA dated back 1 to 7 years responded to self-report questionnaires. The associations between perceived stigma at the time of the TOPFA, current internalized stigma and symptoms of grief, trauma and depression were modeled using multiple linear regression. The proportion of participants reporting scores above the cutoffs on the respective scale was 17.6% for grief, 18.9% for posttraumatic stress, and 10.8% for depression. After controlling for time since the TOPFA, pre-TOPFA mental health and obstetric variables, higher levels of current internalized stigma were related to higher levels of grief, trauma, and depression. Mediation analyses suggested that the effect of perceived stigma at the time of the TOPFA on symptoms of grief and trauma was mediated by current internalized stigma, but the cross-sectional design limited causal interpretation of results. Internalized stigma is associated with long-term psychological distress following a TOPFA. Perceived stigma at the time of the TOPFA may contribute to increased trauma and grief symptomatology, but results need to be validated in longitudinal studies. Health care providers and public initiatives should aim at reducing stigma among affected women.
JM is a 32-year-old primagravida with polycystic ovary disease. She had extreme difficulty conceiving and was started on clomiphene 6 months ago by her fertility specialist. After doubling the dose on the sixth cycle, she successfully became pregnant. On her second prenatal visit at 12 weeks gestation, an ovarian cyst was detected. Ultrasound showed a complex ovarian mass with nodules on the bowel and abdominal wall. There was mild-to-moderate peritoneal fluid. Cytology showed adenocarcinoma of ovarian origin. Further workup demonstrated advanced stage III epithelial ovarian cancer. JM was referred to GYN-oncology who felt pregnancy-sparing debulking was not an option. The oncologist recommended termination of pregnancy due to the risks of delaying chemotherapy. JM refused, citing her fertility difficulties in the past and her desire to carry the pregnancy to term "even if it kills me." She tells the oncologist she cannot bear the thought of terminating her pregnancy under any circumstances. The oncologist wants to comply with her wishes but feels the patient is making a choice that would result in harm to herself. The oncology team requests an ethics consult.
Background: Providers often use birth plans to document parents' wishes for their fetus with a life-limiting condition.
Objective: The objective of the study was to (1) discover important components of a birth plan for parents and providers who carry them out, and (2) understand the experience of parents and providers with birth plans.
Methods: The study design involves mixed-methods, descriptive, exploratory survey. This involves parents (n = 20) of a pregnancy complicated by a life-limiting diagnosis and providers who care for them (n = 116). The approach involves descriptive and univariate analyses for quantitative data and thematic analysis for qualitative data.
Results: Consistent components for families and physicians were diagnosis and medical management of the infant. Families gave greater emphasis on memory-making preferences. Parents feel birth plans give them a sense of control. Themes emerged from parents' experience of creating a birth plan are as follows: sense of control, therapeutic, memory making, effective communication, feeling prepared, and unexpected events. Most physicians feel comfortable discussing goals of care with families but report insufficient time. The importance of components of birth plans and perception of the parents' understanding of the prognosis varied by specialty.
Discussion: Birth plans are beneficial and provide a greater sense of control for parents. Most physicians feel comfortable utilizing them. More than one-third of the physicians do not feel that they have time to complete a birth plan with parents. Communication between physicians and families about limitations of the plan and the potential trajectories could be improved. Communication between maternal and neonatal care providers regarding parent expectations and understanding could also be improved.
OBJECTIVE: To investigate whether less invasive methods of autopsy would be acceptable to bereaved parents and likely to increase uptake.
DESIGN: Mixed methods study.
SETTING: Bereaved parents recruited prospectively across seven hospitals in England and retrospectively through four parent support organisations.
SAMPLE: Eight hundred and fifty-nine surveys and 20 interviews with bereaved parents.
METHODS: Cross-sectional survey and qualitative semi-structured telephone interviews.
MAIN OUTCOME MEASURES: Likely uptake, preferences, factors impacting decision-making, views on different autopsy methods.
RESULTS: Overall, 90.5% of participants indicated that they would consent to some form of less invasive autopsy [either minimally invasive autopsy (MIA), non-invasive autopsy (NIA) or both]; 53.8% would consent to standard autopsy, 74.3% to MIA and 77.3% to NIA. Regarding parental preferences, 45.5% preferred MIA, 30.8% preferred NIA and 14.3% preferred standard autopsy. Participants who indicated they would decline standard autopsy but would consent to a less invasive option were significantly more likely to have a lower educational level (odds ratio 0.49; 95% CI 0.35-0.70; P = 0.000062). Qualitative findings suggest that parents value NIA because of the lack of any incision and MIA is considered a good compromise as it enables tissue sampling while easing the parental burden associated with consenting to standard autopsy.
CONCLUSION: Less invasive methods of autopsy are acceptable alternatives for bereaved parents, and if offered, are likely to increase uptake and improve parental experience. Further health economic, validation and implementation studies are now required to assess the viability of offering these in routine widespread clinical care.
Le diagnostic anténatal aboutit parfois à une décision d’interruption médicale de grossesse (IMG). Il s’agit d’une décision partagée par le corps médical et le couple concernant leur futur enfant, juridiquement reconnu comme fœtus tout au long de la grossesse. Les IMG pour indications fœtales ne peuvent être décidées qu’à l’issue d’un parcours de soins où patientes, couples et soignants se doivent d’aboutir à un projet d’avenir “digne et acceptable” pour l’enfant attendu.
BACKGROUND: A prenatal diagnosis of a life-limiting disease raises complex ethical, emotional, and medical issues. Studies suggest that 40%-85% of parents decide to continue the pregnancy if given the option of Perinatal Palliative Care. However, structured Perinatal Palliative Care programs are missing in many European countries. In Germany, parents have the right to free psychosocial support from pregnancy counseling services after the prenatal diagnosis of a life-limiting disease.
AIM: We aimed to investigate whether German professional pregnancy counselors perceive the need for structured Perinatal Palliative Care and if so, how it should be conceived.
DESIGN: This is a qualitative interview study with purposeful sampling. The interviews were analyzed with the coding method of Saldaña.
SETTING/PARTICIPANTS: A total of 10 professionals from three different pregnancy counseling services participated in the study.
RESULTS: The main topics raised by the professionals were as follows: (1) counseling and parental support during the decision-making process; (2) fragmented or missing support infrastructure for parents; and (3) challenges, hesitations, and barriers, particularly from the different stakeholders, regarding a Perinatal Palliative Care framework. They highlighted the importance of the integration of Perinatal Palliative Care in existing structures, a multi-professional approach, continuous coordination of care and education for all healthcare providers involved.
CONCLUSION: A structured Perinatal Palliative Care program is considered as necessary by the pregnancy counselors. Future research should focus on (1) needs reported by concerned parents; (2) attitude and role of all healthcare providers involved; (3) strategies to include stakeholders in the development of Perinatal Palliative Care networks; and (4) outcome parameters for evaluation of Perinatal Palliative Care frameworks.
Advancing technology in reproductive medicine has led to more frequent perinatal diagnoses of fatal or life-limiting anomaly. For those parents who choose to continue pregnancies while facing such a diagnosis, compassionate and communal perinatal palliative care provides beneficial physical and psycho-socio-emotional support for these families, so that they may preserve and acknowledge the relationship with their child, no matter how brief his/her life.
Ces dernières années, les soins palliatifs en maternité se sont beaucoup développés. Cela est dû à l’évolution du cadre législatif, de la médecine et des demandes de nombreux parents, face à un diagnostic létal durant la grossesse, de poursuivre celle-ci et d’accompagner leur enfant à la naissance. En parallèle, la prise en charge, en réanimation néonatale, de l’extrême prématurité, s’est grandement améliorée. Différentes situations peuvent être concernées par la mise en place de soins palliatifs en maternité. Cet accompagnement spécifique comprend des enjeux importants.
La grossesse suivant un deuil périnatal est particulièrement singulière. Elle nécessite un accompagnement et un suivi attentifs afin de permettre à l’enfant à venir de prendre sa place au sein de sa famille. Entretien avec Marie-José Soubieux, pédopsychiatre et psychanalyste.