Life-limiting Diagnosis Research Articles

Feasibility and Acceptability of Digital Legacy-Making: An Innovative Story-Telling Intervention for Adults With Cancer.

This study examined the feasibility, burden and acceptability of a legacy-making intervention in adults with cancer and preliminary effects on patient quality-of-life (QOL) measures. We conducted a Stage IB pilot, intervention study. The intervention was a digital video legacy-making interview of adults with advanced cancer to create a digital video of their memories and experiences. Baseline and post-video QOL assessments included: Functional Assessment of Cancer Therapy-General (FACT-G), Patient Dignity Inventory (PDI), Hospital Anxiety and Depression Scale (HADS), and Emotional Thermometers for distress, anxiety, anger, help and depression. Participants received a final copy of the digital video for distribution to their families. Adults (n = 16) ages 38-83 years old with an advanced or life-limiting cancer diagnosis completed an intervention. Feasibility and acceptability was strong with 0% attrition. While the pilot study was not powered for quantitative significance, there were changes from baseline to post-intervention in the participants' total or subscale FACT-G scores, PDI, HADS anxiety or depression scores, and Emotional Thermometer scores. A digital video legacy-making intervention is feasible for adults with cancer without significant negative outcomes for individuals completing the study. It remains unclear whether this intervention contributes to positive quality of life outcomes.

QOLP-13. COMPARISON OF SYMPTOM BURDEN AND ASSOCIATED IMPACT ON DAILY LIFE IN GLIOBLASTOMA PATIENTS TREATED WITH AND WITHOUT TUMOR TREATING FIELDS

Abstract INTRODUCTION Clinical trials have demonstrated that the use of low intensity alternating electric fields, known as Tumor Treating Fields (TTFields), via the Optune™ device extends overall survival times in patients with glioblastoma when combined with standard chemotherapy. In addition to survival time, quality of life (QOL) is an important factor in treatment decisions for life-limiting diagnoses. Examinations of the impact of TTFields on QOL have yielded mixed RESULTS: Here, we describe patient-reported symptoms in patients with glioblastoma undergoing treatment with TTFields and compare symptom burden and associated interference with daily life to that of a historic non-TTFields cohort. METHODS Patients with primary glioblastoma who chose treatment with the Optune™ device were prospectively enrolled and asked to complete the brain tumor-specific MD Anderson Symptom Inventory (MDASI-BT) approximately every 8 weeks through cessation of active disease treatment. MDASI-BT assessments were examined for symptom frequency, severity, and relationships between symptom severity and interference with daily life. These results were also compared with a matched cohort of patients who did not chose TTFields treatment and completed MDASI-BT assessments as part of a previous study. RESULTS The most commonly reported symptoms for Optune™ users were fatigue, sleep disturbance and speaking/word finding. Fatigue and sleep disturbance were also among the symptoms rated as most severe, along with feeling drowsy/sleepy. Interference with general activities and overall enjoyment of life as both were reported as both the most common and most severe impacts on daily life. When compared with historic data from non-Optune™ users at the same point in treatment, we found no difference in either symptom burden (p=0.48) or interference scores (p=0.72). CONCLUSION Attention to both survival benefit and symptom experience related to treatment options can inform patient decisions and direct approaches to symptom management as well as improved QOL.

Decisions Parents Make When Faced With Potentially Life-Limiting Fetal Diagnoses and the Importance of Perinatal Palliative Care.

When parents face a potentially life-limiting fetal diagnosis in pregnancy, they then have a series of decisions to make. These include confirmatory testing, termination, and additional choices if they choose to continue the pregnancy. A perinatal palliative team provides a safe, compassionate, and caring space for parents to process their emotions and discuss their values. In a shared decision-making model, the team explores how a family's faith, experiences, values, and perspectives shape the goals for care. For some families, terminating a pregnancy for any reason conflicts with their faith or values and pursuing life prolonging treatments in order to give their baby the best chances for survival is the most important. For others, having a postnatal confirmatory diagnosis of a life limiting or serious medical condition gives them the assurance they need to allow their child a natural death. Others want care to be comfort-focused in order to maximize the time they have to be together as a family. Through this journey, a perinatal palliative team can provide the support and encouragement for families to express their goals and wishes, as well as find meaning and hope.

307 Descriptive and Retrospective Analysis of a Triggering Tool Used to Identify Emergency Department Patients With Unmet Palliative Care Needs

Patients with serious or advanced illness are likely to find themselves in an emergency department (ED) at some point along their trajectory of illness. Identification of appropriate patients as they present to the ED can be a challenge and has been extensively studied. It has been shown that > 50% of inpatient palliative care (PC) consults are generated by ED admitted patients however < 7% consultations originated while in ED . Early PC consults are shown to decrease inpatient length of stay and demonstrate a trend in optimized utilization metrics. Our aim using a novel triggering tool was to understand: 1) volume of ED based palliative medicine consultations, 2) why palliative patients are utilizing the ED, and 3) if this tool could predict patients who subsequently obtained supportive services, or had hospital readmissions, multiple ED visits, critical care admissions, or contributed to hospital mortality over a 1yr period. In June 2016, we trialed a simple triggering tool (fig1) completed by ED physicians to help identify patients presenting to the ED with advanced illness and unmet PC needs. A retrospective chart review of the patients identified during the month of June 2016 was then performed to describe health care utilization metrics in a subsequent 1 year period ending June 2017. Specifically, number of ED visits, hospital readmissions, total hospitalized days, critical care admissions, readmission risk score, palliative care consultations, hospice enrollment, and mortality in a subsequent 1-year period ending June 2017 was extracted. Continuous variables were summarized with median and range while categorical variables were summarized with frequency and percent. All tests are two-sided and p-values less than 0.05 are considered statistically significant. In June 2016, 65 encounters were generated with 58 unique patients; 5 patients had 2 or more ED visits during the month. Patient characteristics at their sentinel ED visit are summarized: median age was 73.5y (Range: 45, 101). The most frequent diagnoses were metastatic cancer (43%), advanced CNS disease (21%) and CHF (19%). 66% of patients were admitted and 22% to ICU/PCU. 15.8% had a prior palliative consult and NONE of these were admitted to the ICU. 80% of all had more than one noted unmet PC need (Step 2). ED consultants suggested 5 (9%) could avoid the ICU. Of patients’ eligible, according to Step 1, 28% (16/58) had more than one life-limiting diagnosis (range1-3). Fifty-two (90%) eligible patients had more than one Step 2 palliative modifier (median 3;Range: 0, 6). The most common were predicted death within 12 months (59%), functional decline (52%), and uncontrolled symptoms (45%). Further investigation revealed that patients who had more life limiting diagnoses also had more palliative modifiers (P=0.031). No life-limiting diagnoses (Step 1) or palliative modifiers (Step 2) were indicative that the patient would be readmitted within 30 days, readmitted within 6 months, and/or die within 1 year of their sentinel visit. Finally, a higher proportion of patients who may have benefited from an inpatient consult died within one year of their sentinel ED visit (P=0.007). Patients presenting to the ED with life-limiting diagnoses often have unmet palliative care needs and would likely benefit from PC services provided in the ED. We have begun a prospective study using meaningful Step1/Step 2 triggers and hope to suggest more meaningful indications for the ED-based PC consult.

Perinatal Palliative Care Birth Planning as Advance Care Planning

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.

Meeting the Perinatal Palliative Care Needs of a Region: Development of a Novel Palliative Care Consultative Program with a Children’s Hospital Fetal Medicine Clinic

Families facing life-limiting fetal diagnosis benefit from palliative care consultation. Differing models of perinatal palliative care (PPC) programs exist in a variety of academic and community-based medical systems to provide medical, social and family-centered care during pregnancy complicated by life-limiting fetal diagnosis. We describe the development of a novel PPC consultative program within a children’s hospital multidisciplinary fetal medicine clinic. Program Goals: Through referral from obstetric specialists, we actively partner with maternal providers within our region to ensure that principles of pediatric palliative care are explored and employed for each mother-infant dyad without …

The Efficacy of Web and Mobile-Based Interventions to Alleviate Physical Symptoms in People with Advanced Diseases: A Systematic Review and Meta-Analysis of Randomized Controlled Trials (GP750)

• Describe how web and mobile-based symptom management interventions may alleviate physical symptoms in patients with advanced, life limiting illness.• Describe the inclusion criteria, search strategy and analysis used in a meta-analysis of web and mobile-based symptom management interventions of physical symptoms in patients with advanced, life limiting illness. Web and mobile-based interventions are promising modalities in which patients with advanced, life-limiting diagnoses can attain symptom-focused care as part of comprehensive palliative care. Systematically review and meta-analyze studies to summarize evidence on the effectiveness of web or mobile-based interventions impacting physical symptoms in patients with advanced, life-limiting diagnoses. Titles and abstracts published from 2004-2019 were identified using PubMed, PsycINFO, and CINAHL. RCTs involving adults with advanced, life-limiting diagnoses using a web or mobile-based intervention to manage their disease or symptoms were included. Interventions must have reported physical symptom outcomes. Risk of bias was assessed using the ROBINS-I tool. Studies that reported mean scores for physical symptoms using validated tools for the intervention and control groups were analyzed. These scores were pooled using a random effects model, and standardized mean difference (SMD) and 95% confidence intervals were reported. Heterogeneity was assessed using the I2 statistic. Eleven of the 1177 screened studies met the inclusion criteria. Interventions focused on five diagnoses (Cancer n=7, COPD n=3, Parkinson’s Disease n=1, Multiple Sclerosis n=1, Post-Polio Syndrome n=1). Intervention components included: general information, messaging a provider, tracking/monitoring, and feedback/tailored information. Eight studies evaluated physical symptoms using a multi-symptom tool and three evaluated specific symptoms (e.g. pain or fatigue). Web or mobile-based interventions significantly improved physical symptoms (SMD -0.34, -0.64 to -0.03, I2=88%). A subgroup analysis including studies using a multi-symptom tool observed a similar trend in improvement of physical symptoms (SMD -0.48, -0.86 to -0.09, I2=91%). This meta-analysis demonstrated that web and mobile-based symptom management interventions are effective modalities to alleviate physical symptoms in adults living with advanced, life-limiting diagnoses. Significant heterogeneity was noted among included studies.

The gift of sight: normalising discussions and referral for corneal donation in the inpatient setting.

For patients with a life-limiting diagnosis, guidance by the General Medical Council recommends exploring patients' beliefs and values about tissue donation with the patient and family towards the end of life. This article gives guidance to healthcare professionals on the process of giving patients the opportunity to donate their corneas, including eligibility, communication and practicalities.

Advance Care Planning Training for Renal Social Workers

End Stage Renal Disease (ESRD) is a life-limiting condition for which hospice and palliative care are not routinely provided to patients and families. While the ESRD mortality rate is close to 25%, patients on dialysis are half as likely to receive hospice services than patients with other life-limiting diagnoses. Nephrologists and dialysis social workers receive little training to effectively lead patients with ESRD and their families through the stages of dying and the completion of advance care planning. The lack of professional training, a need for greater commitment to advanced care planning from dialysis corporations, and reimbursement problems for hospice care, all contribute to low rates of hospice use within the ESRD population. An ESRD advance care training program for social workers is described that was developed as a part of a larger research project designed to increase advance care planning and referrals for hospice for those with ESRD. The goals were to help social workers become better advocates for patients and families, appreciate cultural, spiritual, racial and ethnic differences, and understand the ethical and legal issues in advance care planning. The challenges that emerged included high staff turnover and a paucity of corporate commitment to training.

What Motivates Parents to Continue a Pregnancy after a Life-Limiting Fetal Diagnosis: A Qualitative Study of Parents

Abstract Context: Despite their painful context, the observations and recommendations of studies of perinatal professionals have shown the existence of institutional barriers to the performance of perinatal palliative care (PPC), sometimes linked to these professionals’ moral judgments. This may impede their communication with parents - presentation of management options and decisionmaking - and the concrete performance of PPC. Objective: This study analyzes the motives for which women or couples continue pregnancies after the diagnosis of a lifelimiting fetal disorder (LLFD). Methods: Qualitative study. Discourse analysis of internet posts written by parents on the internet forum of a parents’ association. Most families underlined the importance of spending time with their baby, of getting to know them during the pregnancy and if possible after their birth. These families’ priority is the opportunity to experience and fully exercise their parental responsibilities in making decisions for this unborn infant: showing a personal desire that, insofar as possible, their baby should not suffer and should be welcomed with love. Their child’s lifetime, often brief, is valued as a time of meeting and of love, whether in utero or after birth; they report they attribute little importance to its duration. Avoiding a decision to end the child’s life voluntarily, regardless of his or her prognosis for survival, is also decisive for many parents, even though they cannot prevent the baby’s death due to the disease. A minority mention that this decision is motivated by the hope of a prognosis that will be better than expected, or that the diagnosis will not be confirmed, or a singularly better individual outcome. These cases manifested more of an opening towards a positive surprise, than a lack of confidence in the medical prediction. Religion was not mentioned as an argument for choosing PPC in our study. Conclusion: Parental motivations to continue pregnancies diagnosed prenatally as LLFD are centered on the early bond with the unborn baby, the consideration of his or her full existence as a person, and the prevention of future regrets. These motivations do not appear to be related to religious beliefs or lack of confidence in medical diagnosis/prognosis, Parental duty and love move parents towards this decision. Perinatal professionals should acknowledge these motivations to better understand parental choice and support them.

QOLP-10. PATIENT-REPORTED OUTCOMES DURING TREATMENT FOR GLIOBLASTOMA: SYMPTOM BURDEN AND ASSOCIATED IMPACT ON DAILY LIFE

Abstract INTRODUCTION Glioblastoma is the most common primary malignant brain tumor, with an annual incidence of 3–4 new cases per 100,000 people. Despite advances in chemotherapy, radiotherapy, and surgical interventions, prognosis remains poor. Aims of treatment for life-limiting diagnoses should extend beyond increasing survival time to include palliation of symptoms and promotion of quality of life. Here we describe patient-reported symptoms both early and late in the glioblastoma treatment trajectory, as well as their associated interference with daily life. METHODS Fifty patients with newly diagnosed glioblastoma were recruited between September 2015-March 2018. Demographic and clinical information was collected from medical records. Patients also completed the brain tumor-specific MD Anderson Symptom Inventory (MDASI-BT) approximately every 8 weeks from completion of chemoradiation through cessation of active disease treatment. Both individual and categories of related symptoms reported in the initial two (early treatment) and final two (late treatment) MDASI-BT assessments were examined for symptom frequency, severity, and relationships between symptom severity and interference with daily life. Patients still receiving treatment or who completed &lt; 4 total MDASI-BT assessments were excluded from the analysis. RESULTS The most commonly reported symptoms were often, but not always, consistent with the symptoms rated as most severe. This was true for individual symptoms as well as categories of symptoms. The most common/severe symptoms also changed from early to late treatment. Overall symptom burden was positively correlated with symptom interference in daily life (r=0.67, p&lt; 0.0001). Regression analysis identified different symptoms as predictors of interference in early as opposed to late treatment, and these predictors did not necessarily align with the most common/severe symptoms. CONCLUSION Symptom experience for patients with glioblastoma is complex and dynamic. Attention to symptom trajectories for patients with glioblastoma may direct approaches to assessment, early identification, and symptom management, thus promoting better quality of life.

Experiences from the first 10 years of a perinatal palliative care program: A retrospective chart review.

Perinatal palliative care is a relatively new component of paediatric palliative care which supports families who are expecting the birth of a child with a life-limiting condition. This study seeks to understand the characteristics of the infants and families referred for perinatal palliative care and the context for referrals in terms of diagnoses, referral characteristics, interventions, and outcomes. A retrospective chart review of infants with prenatally diagnosed life-limiting conditions that were referred for perinatal palliative care. Eighty-five referrals were made for perinatal palliative care during the 10-year period, of which, 84 chose to continue with the service. Average gestational age at diagnosis was 23 weeks, and the mean time between diagnosis and referral to palliative care was 7 weeks. Stillbirths were common, occurring in 29% cases. Of livebirths, 59% of the infants survived for 2 days, and 80% died within 30 days. The most commonly referred conditions were trisomy 13 or 18 (24%), severe central nervous system malformations (20%), and severe congenital cardiac disease (16%). Referrals were most often made by neonatologists (39%), and maternal-fetal medicine specialists (36%). Our study confirms previously observed characteristics of diagnosis, referrals, and outcomes, while providing the most detailed account of lifespans for particular diagnoses to date. Our findings validate the need for perinatal palliative care, as 99% of those referred continued with the service. Future research should adopt a prospective approach to identify critical factors affecting decision making of families and physicians in the wake of a life-limiting diagnosis.

Leading up to Loss: Understanding the Perinatal Grief Experience for Expectant Fathers when a Life-Limiting Fetal Diagnosis is Confirmed

Abstract The study aims to understand how men cope with the anticipated loss of their child when a life-limiting fetal diagnosis is confirmed in pregnancy. Twenty-five fathers responded to an online qualitative survey exploring their perinatal loss experiences. Data provide the reader with a glimpse of fathers’ thoughts and feelings between the time of the confirmed fetal diagnosis and the baby’s birth. Study participants chose to either engage with their pregnant partners through showing protection, emotional strength or by being productive in the areas in which they felt they could control; while others chose to avoid by not expressing their feelings with their partners, socially isolating, and turning to their work as a source of refuge. Therapeutic birth planning was shown to be a beneficial method to prepare fathers for their pending loss, involve fathers and their partners in the prenatal decision making and allow fathers to express their feelings throughout the process leading up to the loss. Study results hope to enhance the dearth of research on men’s bereavement experiences in the context of perinatal palliative care and encourage providers to acknowledge fathers’ grief in anticipation of a perinatal loss. Keywords Coping Mechanisms; Expectant Fathers; Grieving Fathers; Life-limiting Fetal Diagnosis; Perinatal Loss; Perinatal Palliative Care

Perinatal Palliative Care: ACOG COMMITTEE OPINION SUMMARY, Number 786.

Perinatal palliative care refers to a coordinated care strategy that comprises options for obstetric and newborn care that include a focus on maximizing quality of life and comfort for newborns with a variety of conditions considered to be life-limiting in early infancy. With a dual focus on ameliorating suffering and honoring patient values, perinatal palliative care can be provided concurrently with life-prolonging treatment. The focus of this document, however, involves the provision of exclusively palliative care without intent to prolong life in the context of a life-limiting condition, otherwise known as perinatal palliative comfort care. Once a life-limiting diagnosis is suspected antenatally, the tenets of informed consent require that the pregnant patient be given information of sufficient depth and breadth to make an informed, voluntary choice for her care. Health care providers are encouraged to model effective, compassionate communication that respects patient cultural beliefs and values and to promote shared decision making with patients. Perinatal palliative comfort care is one of several options along a spectrum of care, which includes pregnancy termination (abortion) and full neonatal resuscitation and treatment, that should be presented to pregnant patients faced with pregnancies complicated by life-limiting fetal conditions. If a patient opts to pursue perinatal palliative comfort care, a multidisciplinary team should be identified with the infrastructure and support to administer this care. The perinatal palliative care team should prepare families for the possibility that there may be differences of opinion between family members before and after the delivery of the infant, and that there may be differences between parents and the neonatal care providers about appropriate postnatal therapies, especially if the postnatal diagnosis and prognosis differ substantially from antenatal predictions. Procedures for resolving such differences should be discussed with families ahead of time.

Perinatal Palliative Care: ACOG COMMITTEE OPINION, Number 786.

Perinatal palliative care refers to a coordinated care strategy that comprises options for obstetric and newborn care that include a focus on maximizing quality of life and comfort for newborns with a variety of conditions considered to be life-limiting in early infancy. With a dual focus on ameliorating suffering and honoring patient values, perinatal palliative care can be provided concurrently with life-prolonging treatment. The focus of this document, however, involves the provision of exclusively palliative care without intent to prolong life in the context of a life-limiting condition, otherwise known as perinatal palliative comfort care. Once a life-limiting diagnosis is suspected antenatally, the tenets of informed consent require that the pregnant patient be given information of sufficient depth and breadth to make an informed, voluntary choice for her care. Health care providers are encouraged to model effective, compassionate communication that respects patient cultural beliefs and values and to promote shared decision making with patients. Perinatal palliative comfort care is one of several options along a spectrum of care, which includes pregnancy termination (abortion) and full neonatal resuscitation and treatment, that should be presented to pregnant patients faced with pregnancies complicated by life-limiting fetal conditions. If a patient opts to pursue perinatal palliative comfort care, a multidisciplinary team should be identified with the infrastructure and support to administer this care. The perinatal palliative care team should prepare families for the possibility that there may be differences of opinion between family members before and after the delivery of the infant, and that there may be differences between parents and the neonatal care providers about appropriate postnatal therapies, especially if the postnatal diagnosis and prognosis differ substantially from antenatal predictions. Procedures for resolving such differences should be discussed with families ahead of time.

Deactivation of Implantable Cardioverter Defibrillator in Patients With Terminal Diagnoses

Implantable cardioverter defibrillators (ICDs) prevent sudden cardiac death. However, in patients with terminal illnesses, these devices may disrupt the dying process. This study was undertaken to review our current strategies surrounding device deactivation. A retrospective chart review was performed at Kingston Health Sciences Centre of patients with an ICD who died from 2015 to 2018. Data collected included patient demographics, clinical details surrounding device implantation, patient co-morbidities leading to deactivation, time to deactivation, physical place of deactivation, and device programming information. Ethics approval was obtained from the Queen's University Health Sciences Research Ethics Board. A total of 49 patients were included for analysis. Mean age at the time of death was 77.5 years (range: 57 to 94 years) and 12.2% (6/49) were women. The indications for ICD implantation were primary prevention of sudden cardiac death in 69.4% (34/49) and secondary prevention in 30.6% (15/49). Deactivation as part of end-of-life care was performed in 32.7% of patients (16/49). Deactivations occurred in clinic in 6.1% (3/49) of patients, on hospital inpatient wards in 12.2% (6/49) of patients, and in critical care settings in 14.2% (7/49) of patients. The remaining 67.3% (33/49) of patients died with fully functioning devices in place. The most prevalent terminal diagnoses were metastatic cancer (22.4%) and end-stage congestive heart failure (20.4%). On average, patients had their devices deactivated 13 months (range: 0 to 62 months) after their terminal diagnosis was established. Once a patient was documented as Do Not Resuscitate (DNR), deactivation was discussed and carried out within a mean time of 38 days (range: 0 to 400 days). Seven patients had their device active for more than 1 month after being documented as DNR. Ten patients (20.4%) received ICD shocks after their terminal diagnosis, 9 received shocks in the month before death, and 2 received shocks after formal DNR orders were in place. Approximately one-third of patients with ICDs received deactivation of their cardioversion/defibrillation therapies as part of their end-of-life care plan. A relatively high proportion of patients (20%) received an ICD shock in the last month of life. In conclusion, addressing device programming needs, including deactivation of cardioversion/defibrillation therapies, should be considered in the context of a patient's goals of care in every patient with an ICD who has a co-existing life-limiting diagnosis.

End-of-life communication: a nationwide study of bereaved parents’ perceptions

ObjectiveTo investigate bereaved parents’ perception of end-of-life communication with healthcare professionals after losing a child due to life-limiting diagnoses.MethodsA national register identified the causes of death of 951 children aged...

Anxiety and Depression in Bereaved Parents After Losing a Child due to Life-Limiting Diagnoses: A Danish Nationwide Questionnaire Survey

ContextLosing a child is the most burdensome event parents can experience involving risks of developing anxiety and depression. ObjectivesTo investigate anxiety and depression in bereaved parents during their child's life-limiting illness and imminent death and three to five years after the loss to target future interventions. MethodsA Danish nationwide cross-sectional questionnaire survey. From 2012 to 2014, a register-based study identified causes of deaths of 951 children aged zero to 18 years. Potential palliative diagnoses were classified according to previously used classification. A total of 402 families were included. A modified version of the self-administered questionnaire “To lose a child” was used. Non-response surveys identified reasons for lack of response. ResultsIn all, 136 mothers and 57 fathers completed a questionnaire, representing parents of 152 children (38%). Sixty-five percent of mothers and 63% of fathers reported moderate-to-severe anxiety during the child's illness. However, three to five years after their loss anxiety had decreased markedly. Thirty-five percent of mothers and 39% of fathers reported moderate-to-severe depression during the child's illness; three to five years after the loss they were suffering equivalently from depression. The Center for Epidemiologic Studies Depression Scale indicated that severe depression was significantly associated with lower education and being unmarried. ConclusionThe reporting of anxiety during the child's illness and prolonged depression in bereaved parents three to five years after the loss indicates a potential need for psychological interventions. In the process of implementing specialized pediatric palliative care in Denmark, our findings should be considered for future treatment programs.

Caring for a Pregnant Patient With a New Diagnosis of Cardiac Angiosarcoma

The use of Jean Watson's theory of human caring science provided a framework for reflecting on the care of patient who had a complex diagnosis. A 34-year-old gravida 1 para 0 woman was admitted at 31-weeks gestation with shortness of breath. She was found to have a pulmonary embolism for which she was admitted for anticoagulation therapy. The imaging revealed a cardiac mass, which was found to be a cardiac angiosarcoma with pulmonary metastases, a life-limiting diagnosis. The patient was treated in the cardiac unit; for 6 weeks, obstetric nurses assessed and completed daily fetal nonstress tests. Multidisciplinary meetings were held among cardiology, oncology, and obstetrics to discuss treatment and birth planning. Many nurses developed a relationship with the family. The patient’s goal was to have a vaginal birth and to breastfeed her baby. To achieve her goals, she was induced at 36 4/7 weeks; however, she needed a cesarean because of nonreassuring fetal heart tracing. The cesarean surgery went smoothly, and the patient accomplished skin-to-skin contact with her newborn and attempted to breastfeed at birth. She was transferred to the surgical intensive care unit for immediate postoperative care. She was ultimately discharged home on Day 5 from the mother–baby unit, with continued treatment for her cancer. Her male newborn weighed 1,975 g and had stable Apgar scores, although he remained in the NICU for hypoglycemia and thermoregulation. He was discharged to home on day of life 22. Caring for patients with complex diagnoses is common in our institution, but caring for this family impacted nursing staff in a different way. Although the patient received a serious diagnosis, it was the relationship with the family that impacted the nurses. When a patient receives terminal diagnosis while she is, instead, expecting to celebrate a new life, it affects everyone involved. Through the use of Watson’s theory of human caring, the nurses involved with this patient shared clinical narratives of how being present and caring for self and others are integral to nursing care. Their stories helped others to process the experience, recover, heal, and identify opportunities for future practice. Strategies could include journaling, sharing their stories, multidisciplinary debriefing, and validation that caring for the care team is as important as caring for the patients.

Birth Planning in Uncertain or Life-Limiting Fetal Diagnoses: Perspectives of Physicians and Parents.

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.