Lasting Legacy: Maternal Perspectives of Perinatal Palliative Care

Kamrath, Heidi; Osterholm, Erin; Stover-Haney, Rachael; George, Thomas; O'Connor-Von, Susan; Needle, Jennifer

doi:10.1089/jpm.2018.0303

Cited by 18 publications

(26 citation statements)

References 14 publications

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“…Reports indicate families feel discussions are framed based on providers' view of quality of life which may be vastly different from theirs. Families appreciate providers who offer comprehensive care and planning as well as encouragement to embrace the moments and milestones of their pregnancy (40). Providers must utilize reflexive practices so that members of the treatment team are aware of their own views and how information is portrayed during this vulnerable time (17).…”

Section: Parental Decision-making Experience With a Prenatally Identimentioning

confidence: 99%

“…Pregnant women and their support people are most comfortable when there is a dedicated provider or care team who takes the time to know them and is willing to explore the fears, questions, and uncertainty that lies ahead with them. Families appreciate learning about all support and treatment options from providers as opposed to seeking resources and information on their own (40,48).…”

Section: Parental Decision-making Experience With a Prenatally Identimentioning

confidence: 99%

“…Families have shared experiences of hearing insensitive or rushed remarks that cause lasting trauma ( 8 , 37 – 39 ). For example, phrases such as “incompatible with life” were found to be insensitive and unhelpful by parents ( 40 ). Families take information in the context of their pre-existing views of disability, parenthood, certainty of the information received, their journey to pregnancy, and their support system when making subsequent decisions ( 41 ).…”

Section: Parental Decision-making Experience With a Prenatally Identimentioning

confidence: 99%

“…The experience of parenting and legacy making are included in the concept of the palliative care birth planning and can occur during the prenatal, perinatal and neonatal care phases. PnPC providers should facilitate exploration of how families seek opportunities to parent, make memories, and create a legacy as the PnPC team is well-equipped to anticipate or suggest what opportunities, choices, and options are available and may be important to the family ( 40 ). Photography, recordings, sibling involvement, creation of tangible keepsakes, bathing, and family-centered or faith-based rituals are commonly valued memory making opportunities during the remainder of the pregnancy and afterwards ( 76 ).…”

Section: Role Of Perinatal Palliative Care-supported Advance Care Plamentioning

confidence: 99%

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Perinatal Palliative Care Birth Planning as Advance Care Planning

2020

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Purpose of Review: A significant number of pregnancies are complicated by a fetus with a life-limiting diagnosis. As diagnoses are made earlier in the pregnancy, families experience anticipatory grief and are faced with navigating goals of care for a baby that has yet to be born. With the support of the care team, families can begin to grieve, plan, and make meaningful memories during the duration of the pregnancy, the birth of their baby, and life of the child. Creating a palliative care birth plan, which expands beyond the traditional concept for delivery planning to include prenatal, perinatal, and neonatal care has become an important method for parents to process the diagnosis, for parents to document their wishes, and for members of the care team to communicate with the goal of supporting and enhancing the experience of the family. This articles reviews recent and relevant literature on the importance of birth planning and the role of perinatal palliative care when a life-limiting fetal diagnosis is made. Recent Findings: The process of birth planning is an important component of perinatal palliative care. Through this process, families can express their fears, values, hopes, and wishes. It also offers an opportunity for providers to communicate these wishes for the remainder of the pregnancy, the delivery, birth, and time afterwards. This has been demonstrated to decrease maternal stress and promote family centered care. Summary: Perinatal birth planning is an important component of perinatal palliative care when a fetus has a life-limiting diagnosis. The process of birth planning can be supportive and therapeutic as well as an important communication tool. With multiple practices and designs of perinatal palliative care programs, there are no standard tools even though important components have been identified. Ultimately, the strategies outlined here can be used as advance care planning tools.

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Section: Parental Decision-making Experience With a Prenatally Identimentioning

confidence: 99%

Section: Parental Decision-making Experience With a Prenatally Identimentioning

confidence: 99%

Section: Parental Decision-making Experience With a Prenatally Identimentioning

confidence: 99%

Section: Role Of Perinatal Palliative Care-supported Advance Care Plamentioning

confidence: 99%

See 2 more Smart Citations

Perinatal Palliative Care Birth Planning as Advance Care Planning

2020

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“…She should be encouraged to participate in making memories, in finding the ordinary within the extraordinary, and in fostering a legacy-medical research, organ donation, writing-for her child. 11 This context of community is essential for perinatal palliative care because this is the only way to attain the care necessary to respect and preserve the communal nature of the family, who are at the center of care. Providers who incorporate community in their care recognize the value in how human beings relate to one another in the most fundamental way.…”

Section: The Necessity Of Communitymentioning

confidence: 99%

Compassion and Community in Perinatal Palliative Care: Understanding the Necessity of the Patient Perspective Through Narrative Illustration

Kuchemba-Hunter

2019

J Palliat Care

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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.

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Access to legacy‐oriented interventions at end of life for pediatric oncology patients: A decedent cohort review

Daniels,

Franqui‐Rios,

Mothi

et al. 2024

Pediatric Blood & Cancer

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BackgroundLegacy‐oriented interventions have the potential to offer pediatric oncology patients and families comfort at end of life and during bereavement. Certified child life specialists often provide these services, and presently little is known about whether disparities exist in the provision of legacy‐oriented interventions.MethodsIn this retrospective decedent cohort study, we examined demographic and clinical characteristics from a sample of 678 pediatric oncology patients who died between 2015 and 2019. Bivariate analysis assessed differences between patients who received any versus no legacy‐oriented intervention. Uni‐ and multivariable logistic regression models assessed associations of baseline characteristics and likelihood of receiving legacy‐oriented intervention. Further multivariable analysis explored joint effects of significant variables identified in the univariable analysis.ResultsFifty‐two percent of patients received a legacy‐oriented intervention. Older adolescents (≥13 years) were less likely (odds ratio [OR]: 1.73, p = .007) to receive legacy‐oriented interventions than younger ones. Patients with home/hospice deaths were also less likely (OR: 19.98, p < .001) to receive interventions compared to patients who passed away at SJCRH locations. Hispanic patients (OR: 1.53, p = .038) and those in palliative care (OR: 10.51, p < .001) were more likely to receive interventions. No significant race association was noted.ConclusionAll children and adolescents with cancer deserve quality care at end of life, including access to legacy‐oriented interventions, yet nearly half of patients in this cohort did not receive these services. By identifying demographic and clinical characteristics associated with decreased odds of receiving legacy‐oriented interventions, healthcare professionals can modify end‐of‐life care processes to improve access. Introducing legacy‐oriented interventions early and increasing exposure in community spaces may enhance access to legacy‐oriented interventions for pediatric oncology patients.

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Lasting Legacy: Maternal Perspectives of Perinatal Palliative Care

Cited by 18 publications

References 14 publications

Perinatal Palliative Care Birth Planning as Advance Care Planning

Perinatal Palliative Care Birth Planning as Advance Care Planning

Compassion and Community in Perinatal Palliative Care: Understanding the Necessity of the Patient Perspective Through Narrative Illustration

Access to legacy‐oriented interventions at end of life for pediatric oncology patients: A decedent cohort review

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