PURPOSE: Investigate whether Life Review Therapy and Memory Specificity Training (LRT-MST) targeting incurably ill cancer patients may also have a beneficial effect on caregiving burden, symptoms of anxiety and depression, and posttraumatic growth of the informal caregivers.
METHODS: Data was collected in the context of a randomized controlled trial (RCT) (secondary analyses) on the effect of LRT-MST among incurably cancer patients. Informal caregivers of participating patients were asked to complete outcome measures at baseline (T0), post-intervention (T1), and 1-month follow-up (T2): caregiver burden (caregivers reaction assessment scale (CRA)), symptoms of anxiety and depression (hospital anxiety and depression scale), and posttraumatic growth (posttraumatic growth inventory). Linear mixed models (intention to treat) were used to assess group differences in changes over time. Effect size and independent samples t tests were used to assess group differences at T1 and T2.
RESULTS: In total, 64 caregivers participated. At baseline, 56% of the caregivers experienced anxiety and 30% depression. No significant effect was found on these symptoms nor on posttraumatic growth or most aspects of caregiver burden. There was a significant effect of LRT-MST on the course of self-esteem (subscale CRA) (p = 0.013). Effect size was moderate post-intervention (ES = - 0.38, p = 0.23) and at 3-month follow-up (ES = 0.53, p = 0.083).
CONCLUSIONS: Many caregivers of incurably ill cancer patients experience symptoms of anxiety and depression. LRT-MST does not improve symptoms of depression and anxiety, negative aspects of caregiver burden, or posttraumatic growth. LRT-MST may have a protective effect on self-esteem of informal caregivers (positive aspect of caregiver burden).
Objectives: Euthanasia and assisted suicide (EAS) of individuals with mental disorders is a growing practice in several countries, including the Netherlands. Here, we aimed to identify the most frequent dimensions of and associated factors to psychological pain, which has been associated with suicidality, in individuals undergoing psychiatric EAS.
Methods: An exploratory retrospective content analysis of the English translation of 66 digital case records of individuals who died by EAS in the Netherlands between 2011 and 2014 was performed. Nine standard psychological pain dimensions (irreversibility, loss of control, emptiness, emotional flooding, freezing, social distancing, narcissistic wounds, confusion, and self-estrangement), illness, and sociodemographic variables were evaluated by 2 independent raters using a premade data abstraction form (Kohen > 0.8 in all cases).
Results: The mean number of dimensions was 4.64 ± 1.20 (median = 5), out of 9. The most frequent dimensions were irreversibility, loss of control, emptiness, and emotional flooding, in decreasing order. Past treatment refusal and the mention of social connections in case descriptions were related to the higher number of psychological pain dimensions (4.89 ± 1.24 vs. 4.31 ± 1.07, P = 0.03 and 5.05 ± 1.17 vs. 4.43 ± 1.17, P = 0.03, respectively). Emotional flooding was the only dimension specifically associated with specific psychiatric conditions, namely posttraumatic phenomena and personality disorders.
Conclusions: Numerous psychological pain dimensions were detected in case descriptions of individuals who underwent EAS before the procedure. Subjective nature of the study precludes definite conclusions but suggest that future studies should explore psychological pain and the role of interventions targeting it in patients requesting EAS.
Objectives: Little is known about the experience of family caregivers of patients who require prolonged mechanical ventilation (PMV). We examined the perspectives of caregivers of patients who died after PMV to explore the role of palliative care and the quality of dying and death (QODD) in patients and understand the psychological symptoms of these caregivers.
Methods: A longitudinal study was performed in five hospitals in Taipei, Taiwan. Routine palliative care family conferences and optional consultation with a palliative care specialist were provided, and family caregivers were asked to complete surveys.
Results: In total, 136 family caregivers of 136 patients receiving PMV were recruited and underwent face-to-face baseline interviews in 2016–2017. By 2018, 61 (45%) of 136 patients had died. We successfully interviewed 30 caregivers of patients’ death to collect information on the QODD of patients and administer the Impact of Event Scale (IES), Hospital Anxiety and Depression Scale (HADS) and Center for Epidemiologic Studies Depression (CES-D) scale to caregivers. We observed that more frequent palliative care family conferences were associated with poorer QODD in patients (coefficients: -44.04% and 95% CIs -75.65 to -12.44), and more psychological symptoms among caregivers (coefficient: 9.77% and 95% CI 1.63 to 17.90 on CES-D and coefficient: 7.67% and 95% CI 0.78 to 14.55 on HADS). A higher caregiver burden at baseline correlated with lower psychological symptoms (coefficient: -0.35% and 95% CI -0.58 to -0.11 on IES and coefficient: -0.22% and 95% CI -0.40 to -0.05 on CES-D) among caregivers following the patients’ death. Caregivers’ who accepted the concept of palliative care had fewer psychological symptoms after patients’ death (coefficient: -3.29% and 95% CI -6.32 to -0.25 on IES and coefficient: -3.22% and 95% CI -5.24 to -1.20 on CES-D).
Conclusions: Palliative care conferences were more common among family members with increased distress. Higher caregiver burden and caregiver acceptance of palliative care at baseline both predicted lower levels of caregiver distress after death.
All medical care providers are legally and ethically bound to respect their patients' wishes. However, as patients lose decision-making capacity and approach end of life, their families or surrogates, who are confronted with grief, fear, self-doubt, and/or uncertainty, may ask physicians to provide treatment that contradicts the patients' previously stated wishes. Our work discusses the legal and ethical issues surrounding such requests and provides guidance for clinicians to ethically and compassionately respond—without compromising their professional and moral obligations to their patients.
Background: patients with palliative needs often experience high symptom burden which causes suffering to themselves and their families. Depression and psychological distress should not be considered a “normal event” in advanced disease patients and should be screened, diagnosed, acted on and followed-up. Psychological distress has been associated with greater physical symptom severity, suffering, and mortality in cancer patients. A holistic, but short measure should be used for physical and non-physical needs assessment. The Integrated Palliative care Outcome Scale is one such measure. This work aims to determine palliative needs of patients and explore screening accuracy of two items pertaining to psychological needs.
Methods: multi-centred observational study using convenience sampling. Data were collected in 9 Portuguese centres. Inclusion criteria: =18 years, mentally fit to give consent, diagnosed with an incurable, potentially life-threatening illness. Exclusion criteria: patient in distress (“unable to converse for a period of time”), cognitively impaired. Descriptive statistics used for demographics. Receiving Operator Characteristics curves and Area Under the Curve for anxiety and depression discriminant properties against the Hospital Anxiety and Depression Scale.
Results: 1703 individuals were screened between July 1st, 2015 and February 2016. A total of 135 (7.9%) were included. Main reason for exclusion was being healthy (75.2%). The primary care centre screened most individuals, as they have the highest rates of daily patients and the majority are healthy. Mean age is 66.8 years (SD 12.7), 58 (43%) are female. Most patients had a cancer diagnosis 109 (80.7%). Items scoring highest (=4) were: family or friends anxious or worried (36.3%); feeling anxious or worried about illness (13.3%); feeling depressed (9.6%). Using a cut-off score of 2/3, Area Under the Curve for depression and anxiety items were above 70%.
Conclusions: main palliative needs were psychological, family related and spiritual. This suggests that clinical teams may better manage physical issues and there is room for improvement regarding non-physical needs. Using the Integrated Palliative care Outcome Scale systematically could aid clinical teams screening patients for distressing needs and track their progress in assisting patients and families with those issues.
Symptom relief is fundamental to palliative care. Aboriginal and Torres Strait Islander (Indigenous) Australians are known to experience inequities in health care delivery and outcomes, but large-scale studies of end-of-life symptoms in this population are lacking. We compared symptom-related distress among Indigenous and non-Indigenous Australian patients in specialist palliative care using the multi-jurisdictional Palliative Care Outcomes Collaboration dataset. Based on patient-reported rating scale responses, adjusted relative risks (aRRs) stratified by care setting were calculated for occurrence of (i) symptom-related moderate-to-severe distress and worsening distress during a first episode of care and (ii) symptom-related moderate-to-severe distress at the final pre-death assessment. The p-value significance threshold was corrected for multiple comparisons. First-episode frequencies of symptom-related distress were similar among Indigenous (n = 1180) and non-Indigenous (n = 107,952) patients in both inpatient and community settings. In final pre-death assessments (681 Indigenous and 67,339 non-Indigenous patients), both groups had similar occurrence of moderate-to-severe distress when care was provided in hospital. In community settings, Indigenous compared with non-Indigenous patients had lower pre-death risks of moderate-to-severe distress from overall symptom occurrence (aRR 0.78; p = 0.001; confidence interval [CI] 0.67-0.91). These findings provide reassurance of reasonable equivalence of end-of-life outcomes for Indigenous patients who have been accepted for specialist palliative care.
BACKGROUND: Psychological distress is highly prevalent among patients with metastatic colorectal cancer.
AIMS: To perform an economic evaluation of a combined screening and treatment program targeting psychological distress in patients with metastatic colorectal cancer in comparison with usual care.
DESIGN: Societal costs were collected alongside a cluster randomized controlled trial for 48 weeks. A total of 349 participants were included.
SETTING: Participants were recruited from oncology departments at 16 participating hospitals in the Netherlands.
METHODS: Outcome measures were the Hospital Anxiety and Depression Scale and quality-adjusted life-years. Missing data were imputed using multiple imputation. Uncertainty was estimated using bootstrapping. Cost-effectiveness planes and cost-effectiveness acceptability curves were estimated to show uncertainty surrounding the cost-effectiveness estimates. Sensitivity analyses were performed to check robustness of results.
RESULTS: Between treatment arms, no significant differences were found in Hospital Anxiety and Depression Scale score (mean difference: -0.058; 95% confidence interval: -0.13 to 0.011), quality-adjusted life-years (mean difference: 0.042; 95% confidence interval: -0.015 to 0.099), and societal costs (mean difference: -1152; 95% confidence interval: -5058 to 2214). Cost-effectiveness acceptability curves showed that the probability of cost-effectiveness was 0.64 and 0.74 at willingness-to-pay values of €0 and €10,000 per point improvement on the Hospital Anxiety and Depression Scale, respectively. The probability that the intervention was cost-effective compared to usual care for quality-adjusted life-years was 0.64 and 0.79 at willingness-to-pay values of €0 and €20,000 per quality-adjusted life-year, respectively.
CONCLUSION: The intervention is dominant over usual care, primarily due to lower costs in the intervention group. However, there were no statistically significant differences in clinical effects and the uptake of the intervention was quite low. Therefore, widespread implementation cannot be recommended.
The varied physical, social, and psychological stressors that accompany advanced disease can be burdensome and cause intense emotional suffering, hindering the ability of patients and families to cope in day-to-day life and negatively affecting quality of life. This article addresses key concepts for the assessment and management of commonly encountered types of psychological distress in serious illness including grief, prolonged grief, major depressive disorder, death contemplation, and suicidal ideation.
Background: Early identification of psychosocial distress is important to address the needs of vulnerable populations and influence symptom management. Older veterans diagnosed with life-limiting cancers are particularly vulnerable because they often have unmet needs, experiencing psychological or emotional problems and gaps in healthcare communication, which extends suffering. Lack of emotional support, ongoing physical pain, and unresolved symptom control can further increase distress among older veterans, contributing to complexity of decision-making for end of life (EOL) care.
Objective: We explored older veterans’ experiences and identification of psychosocial distress in cancer care to better understand how they describe distress while facing the end of life.
Methods: Guiding this study is a conceptual framework from psychosocial oncology with the multifactorial experience of distress indicated by NCCN guidelines for distress screening. We use a phenomenological approach to explore the experience of psychosocial distress among older veterans diagnosed with advanced cancers at risk for dying within a year. Inclusion criteria: Provider response of “no” to, “Would you be surprised if your patient died within a year?” and “yes”, to the question, “Have you talked with your patient about the severity of their illness as being life-limiting, terminal?”
Results: Five themes emerged: (1) the meaning of distress: “It’s hard to explain”; (2) severity of advanced cancer: “There’s no stage five”; (3) distressing thoughts about the possibility of dying: “Either way, it’s life limiting”; (4) coping: “Deal with it and hope for a better day”; and (5) personal factors: “I don’t want to be anything but a man who can handle adversity.” Findings suggest older veterans may have unique cancer experiences different from other populations.
Conclusion: Older veterans in this study exhibited distressing symptoms which demonstrate they are at risk for declining health and in need of support for their distress. Healthcare providers are urged to understand the complexity of distress to provide the best possible treatment for older veterans.
PURPOSE: The purpose of this study was to investigate the relationship between social support (from personal and workplace sources) and psychological distress (depression, anxiety, and stress symptoms), as well as to examine the mediating role of satisfaction with work-family balance among hospice nurses.
DESIGN AND METHOD: A cross-sectional study design was utilized with a sample of 90 hospice nurses from the southern United States. Participants completed online surveys, including (a) the Depression, Anxiety, and Stress Scale (DASS-21), (b) loosely adapted items from the Affectivity, Burnout, and Absenteeism Scales, and (c) Satisfaction with Work-Family Balance Scale.
FINDINGS: Workplace social support, not personal social support, was associated with lower psychological distress, and satisfaction with work-family balance mediated the relationship between workplace social support and depression symptoms, a component of psychological distress.
CONCLUSIONS: Hospice nurses' social support in the workplace and their satisfaction with the balance between their work and family lives play a role in supporting their mental health.
CLINICAL RELEVANCE: Hospice nurses may benefit from programs fostering the creation of workplace-based interpersonal relationships.
Background: There is a lack of studies examining the prevalence and severity of psychosocial distress in parents caring for a child with life-limiting condition. More research is also needed to better understand the experience, support needs and quality-of-life of this population.
Aim: To describe the experience and support needs of caring for children with life-limiting conditions and examine the level of distress and quality-of-life experienced by parents.
Design: Cross-sectional, prospective, quantitative study guided by an advisory group. Participants completed a survey that included demographics and self-report outcome measures of unmet support needs, appraisal of caregiving, psychological distress and quality-of-life. Bivariate correlation analyses were performed to examine for associations between measures.
Setting/participants: Parents currently caring for one or more children (<=18 years) with a life-limiting condition and registered with a paediatric palliative care service (Australia).
Results: In total, 143 parents (88% female) completed the questionnaire (36% RR). Compared with population norms, participants reported low quality-of-life, high carer burden and high psychological distress. Almost half (47%) of the sample met the criteria for one or more diagnoses of clinically elevated stress, anxiety or depression. There were significant associations between the psychosocial outcome variables; carer strain and depression had the strongest correlations with quality-of-life (r = –.63, p < .001, for both). Participants also reported multiple unmet needs related to emotional and practical support.
Conclusions: This study contributes to the growing body of evidence on paediatric palliative care, specifically that parents caring for a child with a life-limiting condition report high levels of distress and burden, low quality-of-life and need more emotional and practical support targeted at their unmet needs. Paediatric palliative care services should routinely assess parent mental health and provide appropriate support.
BACKGROUND: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear.
OBJECTIVE: The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness.
DESIGN AND METHODS: A dimensional analysis of articles retrieved from a librarian-assisted systematic review of Scopus, CINAHL, and PsychInfo was conducted, focusing on how children, parents, other family members, and healthcare providers describe parental moral distress, both explicitly through writings on parental moral experience and implicitly through writings on parental involvement in distressing aspects of the child's serious illness.
ETHICAL CONSIDERATIONS: To promote child and family best interest and minimize harm, a nuanced understanding of the moral, existential, emotional, and spiritual impact of serious pediatric illness is needed. The cases used in this dimensional analysis come from the first author's IRB approved study at the Children's Hospital of Philadelphia and subsequent published studies; or have been adapted from the literature and the authors' clinical experiences.
FINDINGS: Three dimensions emerged from the literature surrounding parent moral distress: an intrapersonal dimension, an interpersonal dimension, and a spiritual/existential dimension. The overarching theme is that parents experience relational solace and distress because of the impact of their child's illness on relationships with themselves, their children, family, healthcare providers, their surrounding communities, and society.
DISCUSSION: Elucidating this concept can help nurses and other professionals understand, mitigate, or eliminate antecedents to parental moral distress. We discuss how this model can facilitate future empirical and conceptual bioethics research, as well as inform the manner in which healthcare providers engage, collaborate with, and care for families during serious pediatric illness.
CONCLUSION: Parent moral distress is an important and complex phenomenon that requires further theoretical and empirical investigation. We provide an integrated definition and dimensional schematic model that may serve as a starting point for future research and dialogue.
Background: Surviving family caregivers describe the end-of-life experience as "very distressing" and half of those surveyed indicate inadequate emotional support; however, little is known about the causes of distress on the last day of life.
Objective: The purpose of this study was to explore the experience of the last day of life from the perspective of the surviving caregiver.
Design: The study used a narrative inquiry approach.
Setting/Subject: Surviving caregivers of deceased adult cancer patients at a single institution were invited to participate.
Measurements: After reviewing, coding, and categorizing the narratives individually, they were collectively considered and thematically analyzed across all cases to provide a summative analysis.
Results: Six themes captured the overall experiences: (1) relationships and communication with health care providers impact overall experience, (2) being able to prepare for death was a source of comfort, (3) being a caregiver impacts quality of life and identity, (4) spiritual visitations as a welcome experience, (5) navigating the dying days and early grief period wrought with guilt and closure, and (6) loss of community contributes to distress and distracts from healing.
Conclusions: In this study, distress was most often linked to communication failures. Caregivers also experienced distress and guilt related to the loss of their caregiver role. Findings also support a need for increased preparation for caregivers. Finally, the study showed the frequency of visitations/spiritual experiences during grieving.
BACKGROUND: Cancer and its treatment can cause persistent psychosocial consequences for patients. Although distress among the general cancer population has been well studied, many patients who report high distress do not receive specialty, follow-up care. We know little about the distress needs of those who attend appointments with support services. Improved knowledge of this subpopulation of patients with cancer may improve supportive care service delivery.
METHODS: This is a descriptive chart review that examines results from a cancer distress tool in an outpatient supportive care clinic and explores factors associated with distress among patients who attend an appointment for support beyond usual oncologic care. All adult patients with a cancer diagnosis presenting to the supportive care clinic during a 120-day period for an initial intake completed a self-report needs assessment tool. A review of medical records was then conducted. Primarily descriptive statistics, mean comparison, and correlational analysis summarized the data.
RESULTS: Nearly 48% of individuals rated very severe distress in at least one area of functioning. Areas with the highest average distress ratings included pain, fatigue, sleep, and anxiety. No significant associations were found between total distress scores and demographic or illness-related variables. Anxiety and depression were higher among those scheduled to see a behavioral health specialist than a palliative provider.
CONCLUSIONS: Patient and illness factors were not associated with needs among those who attended appointments with support providers. Study results suggest that a biopsychosocial approach from interdisciplinary providers is warranted to manage the needs of patients referred for additional supportive care.
BACKGROUND AND OBJECTIVE: A priority focus on palliative and supportive care is helping the 43.5 million caregivers who care for individuals with serious illness. Lacking support may lead to caregiver distress and poorer care delivery to patients with serious illness. We examined the potential of instrumental support (assistance with material and task performance) to mitigate distress among caregivers.
METHOD: We analyzed data from the nationally representative Health Information National Trends Survey (HINTS V2, 2018). Informal/family caregivers were identified in HINTS V2 if they indicated they were caring for or making healthcare decisions for another adult with a health problem. We used the PROMIS® instrumental support four-item short-form T-scores and the Patient Health Questionnaire (PHQ-4) for distress. We examined multivariable linear regression models for associations between distress and instrumental support, adjusted for sampling weights, socio-demographics, and caregiving variables (care recipient health condition(s), years caregiving (=2), relationship to care recipient, and caregiver burden). We examined interactions between burden and instrumental support on caregiver distress level.
RESULTS: Our analyses included 311 caregivers (64.8% female, 64.9% non-Hispanic White). The unweighted mean instrumental support T-score was 50.4 (SD = 10.6, range = 29.3-63.3); weighted mean was 51.2 (SE = 1.00). Lower instrumental support (p < 0.01), younger caregiver age (p < 0.04), higher caregiving duration (p = 0.008), and caregiver unemployment (p = 0.006) were significantly associated with higher caregiver distress. Mean instrumental support scores by distress levels were 52.3 (within normal limits), 49.4 (mild), 48.9 (moderate), and 39.7 (severe). The association between instrumental support and distress did not differ by caregiver burden level.
CONCLUSIONS: Poor instrumental support is associated with high distress among caregivers, suggesting the need for palliative and supportive care interventions to help caregivers leverage instrumental support.
AIM: To develop a simultaneous, evolutionary concept analysis of moral distress and moral uncertainty in the context of medical assistance in dying (MAiD).
BACKGROUND: Moral distress is well represented in nursing literature but disagreement persists in how the concept is defined and understood. Moral uncertainty has not been investigated in-depth. Further definition and conceptual clarity is required to understand these concepts within the context of MAiD.
DESIGN: Simultaneous concept analysis.
DATA SOURCES: Cumulative Index of Nursing and Allied Health Literature, Google Scholar, and PubMed databases were searched for articles in English. The final sample consisted of 44 documents published from 1984 to 2019.
METHOD: An adapted combination of Rodgers's Evolutionary Model and Haase et al's Simultaneous Concept Analysis method.
RESULTS: Despite the significant overlap, moral distress and moral uncertainty have subtle distinguishing differences. Attributes of moral distress in the context of MAiD focus on knowing the right course of action but being unable to act, especially when conflict or suffering occurs. Attributes of moral uncertainty center on an inability to decide on which course of action to take or knowing what outcome is preferable.
CONCLUSION: More research is required to bring further clarity to these concepts and develop interventions to support nurses who receive requests for or participate in MAiD.
Advanced cancer patients with cachexia and their families can suffer from eating-related distress. This complex entity encompasses patients’ struggle to nourish themselves, emotional and social consequences of their inability to maintain food intake, and profound disturbance in family relationships. With evidence-based nutritional care, as well as symptom management to enable food intake, cachexia can be mitigated to some degree. In addition, patients and families require psychosocial support and education to understand and cope with this condition. Only by taking an integrated approach can health care teams alleviate eating-related distress, improve quality of life (QOL), reduce interpersonal conflicts, and alter perceptions of nutritional neglect for patients and families. However, few studies have investigated eating-related distress among patients and families. The aim of this narrative review is to describe what is known about eating-related distress and the roles of integrated palliative, supportive, and nutritional care in improving QOL of patients and families.
Objectif: Étudier la relation entre la détresse et la confusion mentale chez les patients en situation palliative afin d’apporter une prise en charge adaptée à cette situation complexe et fréquente en fin de vie.
Méthodes: C’est une étude quantitative observationnelle, prospective et multicentrique réalisée auprès de patient en situation palliative. Les équipes de chaque structure incluaient les patients et réalisaient des évaluations à l’aide d’un formulaire visant à renseigner l’intensité de la détresse ressenti par le patient, à l’aide de la Distress Thermometer auto-évaluée puis hétéro-évaluée, et la présence ou non d’une confusion à l’aide de la Nu-DESC. En outre, il était rapporté la prise ou non des prescriptions médicamenteuses anticipées ainsi que toutes les caractéristiques épidémiologiques du patient.
Résultats: Nous avons pu inclure 51 patients et réaliser 467 entretiens. Aucune relation n’a été mise en évidence entre la détresse et la confusion sur tous les entretiens confondus. Par contre, une relation faible à modérée a été mise en évidence au premier entretien. La confusion a tendance à augmenter à l’approche du décès alors qu’aucune relation n’a pu être mise en évidence entre la détresse et la date du décès.
Conclusion: Ces résultats questionnent sur le ressenti des patients confus puisqu’il n’a pas été mis en évidence que la confusion engendre une détresse plus importante chez ces patients sur tous les entretiens.
De plus en plus souvent, nous entendons parler d'euthanasie : que ce soit par les médias, par les politiques, par les services publics ou par diverses associations, la thématique est sur toutes les langues.
Cependant, force est de constater que le sujet est bien souvent abordé avec méconnaissance ou parti pris. Mon souhait est donc d'intervenir dans cet ouvrage pour décrire le plus fidèlement possible la très dure réalité qui entoure le processus d'euthanasie.
Non, la vie dans nos hôpitaux n'est pas - ou n'est plus - un long fleuve tranquille. Elle est en crue permanente, avec de nombreux débordements quotidiens. En tant que membre du personnel soignant, je constate combien il nous est difficile à nous, infirmiers, médecins, psychologues, assistants sociaux, de garder la tête hors de l'eau, lorsqu'il est question de ce qu'on appelle pompeusement "éthique".
Introduction: Custody concerns are a major source of psychosocial distress among single parents with life-limiting illness. Although children are increasingly living in diverse household structures, the current health care system is not designed to meet the unique needs of single parents or nontraditional families. Patients with unaddressed custody concerns can experience psychological suffering during treatment and at the end of life. Lack of clarity and resolution regarding guardianship may also result in additional hardship for their grieving children.
Case Description: We present the case of a 36-year-old-female with metastatic breast cancer, who was the single mother of four children. Despite significant concerns about her children's well-being, the patient did not complete legal guardianship processes. She experienced immense distress at the end of her life due to an unresolved custody plan.
Discussion: This case demonstrates the need for addressing custody and guardianship concerns with seriously ill patients early in the illness trajectory. While clinicians need not become experts on custody and guardianship themselves, understanding the impact of custody concerns-and the barriers to their resolution-can substantially improve end-of-life care for patients and better equip surviving family for the changes that lie ahead.