lundi 22 mars 2010

Palliative care for prenatally diagnosed lethal fetal abnormality

Diagnosis of lethal fetal abnormality raises challenging decisions for parents and clinicians. Most parents opt for termination, which may include feticide. Advances in imaging seem unlikely to lead to earlier diagnoses. Perinatal palliative care offers an alternative. Parental decision making and the clinical aspects of perinatal palliative care were studied after a prenatal diagnosis of lethal fetal abnormality in 20 pregnancies.
40% of parents chose to continue the pregnancy and pursue perinatal palliative care. Six of these eight babies were liveborn and lived for between 1,5 h and 3 weeks.

"In our experience, those parents who chose this model of care gave positive feedback about their decision and the care provided."

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Journal Reference:
A C G Breeze et al. Palliative care for prenatally diagnosed lethal fetal abnormality. Arch. Dis. Child. Fetal Neonatal Ed. 2007;92;56-58; originally published online 16 May 2006;

Full of Grace, Couple grieves loss of their infant daughter

Grace Marion Chapman lived outside her mother’s womb for only 90 minutes.
But her parents — Sherry and Brent Chapman of Erie — will remember her for a lifetime.
“We’re very proud parents,” Sherry said. “We’re not ashamed of our daughter. We’re not ashamed of our situation. We’re certainly not angry or bitter. We’re very proud, and in our story, we’re still parents. Our daughter’s not here now, but we’re still parents.”

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published on 3/21/2010 in the Longmont Times-Call

vendredi 19 mars 2010

Perinatal Hospice: Family-Centered Care of the Fetus with a Lethal Condition

Twenty-eight newborns prenatally diagnosed with lethal anomalies were eligible for a pilot hospice program at Rockford Memorial Hospital (RMH). Comprehensive care in a comforting community setting was provided to the 75% of families who chose this option. No maternal morbidity resulted. In the 76% of infants who were born live, survival ranged from 20 minutes to 256 days. Further study of psychological outcomes is warranted.

"the need for comprehensive, especially psychological, care for families of infants who will die in utero, or live for only a short while after birth, has been underestimated. The family's experience with these pregnancies is analogous to that of families with a terminally ill child. Their needs are best fulfilled with a comprehensive end-of-life approach."

"We recognize that when a prenatal diagnosis portends perinatal death of the family's newest member, hospice care must start at the time of diagnosis."

"To provide adequate understanding, especially while exploring anticipatory
grieving, parents were carefully counseled regarding the fetal diagnosis and probable prognosis. Families were allowed to grieve, explore life issues, and prepare for the precious time they might have to spend with their child. Antepartum consultation with the neonatology service included development of a postnatal plan for the eventuality of a live birth."

"Perinatal hospice care has now been offered on the RMH perinatal service for a number of years. During the pilot program, 75% of patients chose to continue their pregnancies in this environment of care, despite prenatal diagnosis of a lethal condition. The care of this group of patients was accomplished without any notable maternal morbidity."

"Typically, the options presented to the parents at the time a lethal condition is diagnosed include abortion of the pregnancy versus continued pregnancy with routine maternal care, and nonintervention for the neonate at the time of labor and delivery. A bare presentation of these options may leave parents with the perceived choice of futilely watching their
infant die, which they may also interpret as increasing the suffering of their child, versus actively doing something to end this sudden, emotionally wrenching dilemma."

"Parents of infants with external congenital defects are not repulsed by the appearance of their infant, and most emphasize the normal aspects of the child. A major advantage of perinatal hospice is that a significant majority of these infants may be live-born, allowing the parents and family a chance to share precious time with their infant, even if the infant's life is exceedingly brief."

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Journal Reference:
Calhoun BC, Napolitano P, Terry M, et al. Perinatal hospice. Perinatal Hospice: Family-Centered Care of the Fetus with a Lethal Condition. Journal of American Physicians and Surgeons Volume 11 Number 2 Summer 2006

jeudi 18 mars 2010

Counselling following diagnosis of a fetal abnormality: the differing approaches of obstetricians, clinical geneticists, and genetic nurses

Women receiving a positive diagnosis of an abnormality during pregnancy may be counselled about a termination by one of several types of health professionals including obstetricians, geneticists, and genetic nurses. There is anecdotal evidence to suggest that these groups differ in both
their approaches to counselling and their attitudes towards abnormality. The aim of the current study is to document how genetic nurses, geneticists, and obstetricians describe their own counselling of women following the diagnosis of specific fetal abnormalities. Obstetricians reported counselling in a significantly more directive fashion than
did geneticists, who in turn reported counselling in a more directive way than did genetic nurses. The extent to which the groups differed in their reported approaches varied across conditions. The most marked difference was evident for Down's syndrome: 94% of genetic nurses, 57% of geneticists, and 32% of obstetricians reported counselling non-directively.
Future research needs to focus on what these different groups see as the
objectives of counselling in this situation, how they actually counsel, and with what effects.

So, for example, respondents in all three groups were more likely to report counselling non-directively for sickle cell disease, than they were for cleft lip or anencephaly.
... consensus between all three groups was evident for just two conditions, cleft lip and anencephaly, the majority of respondents reporting counselling parents in the direction of terminating the affected pregnancy for anencephaly.

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Journal Reference:
T Marteau, H Drake and M Bobrow. Counselling following diagnosis of a fetal abnormality: the differing approaches of obstetricians, clinical geneticists, and genetic nurses. J Med Genet 1994 31: 864-867 doi: 10.1136/jmg.31.11.864

Continuing with pregnancy after a diagnosis of lethal abnormality: experience of five couples and recommendations for management

In the genetics clinic we meet many parents whose pregnancy has been complicated by the unexpected finding of a serious fetal malformation. Many of these couples terminate their pregnancy but some continue and allow nature to take its course. We summarise the experience of five couples and highlight various aspects showing the inappropriateness of routine obstetric care for these women. These were five consecutive couples (see table 1) known to the genetics department who agreed to a semistructured, tape recorded interview at varying intervals (one week to eight months) after their pregnancies.
The decision to continue the pregnancy allowed the parents to avoid some feelings of guilt, regret, and doubt. "We saw him. If I had had a termination we would have had nothing to remember. And I would always have wondered if the scans were wrong. I would have had that termination on my conscience for the rest of my life" (case 4). "I'd 99.9% accepted that the baby wasn't going to live. I was always holding out a little hope. But if the pregnancy had been terminated I would have had guilt. Now I feel no guilt or remorse" (case 5).
Some parents wish to continue a pregnancy given a poor prognosis for the fetus. If counselling was less directive possibly the proportion would be higher. All the parents interviewed found the time to prepare for the death of their child valuable, but many had distressing experiences during that time. These parents need extra support, understanding, and respect for their decision.

Journal Reference:
Chitty Lyn S et al. For Debate: Continuing with pregnancy after a diagnosis of lethal abnormality: experience of five couples and recommendations for management. BMJ 1996;313:478-480 (24 August)