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.
Whole brain failure constitutes the diagnostic criterion for death determination in most clinical settings across the globe. Yet the conceptual foundation for its adoption was slow to emerge, has evoked extensive scientific debate since inception, underwent policy revision, and remains contentious in praxis even today. Complications result from the need to relate a unitary construal of the death event with an adequate account of organismal integration and that of the human organism in particular. Advances in the neuroscience of higher human faculties, such as the self, personal identity, and consciousness, and dynamical philosophy of science accounts, however, are yielding a portrait of higher order global integration shared between body and brain. Such conceptual models of integration challenge a praxis relying exclusively on a neurological criterion for death.
BACKGROUND: Diagnostic criteria for prolonged grief have appeared in the Diagnostic and Statistical Manual of Mental Disorders ( DSM-5; persistent complex bereavement disorder, PCBD) and in the ICD-11 (prolonged grief disorder, PGD), and the question of which diagnosis is most clinically useful has been hotly debated. This study provides the first longitudinal comparison of PCBD and PGD in their ability to capture symptom change over time and their relation to long-term outcomes.
METHODS: A community sample was recruited consisting of 282 individuals who had recently lost a spouse. Structured clinical interviews were conducted at 3, 14, and 25 months postloss for symptoms corresponding to PCBD and PGD criteria. Outcomes at 25 months included PCBD and PGD caseness, depression, global functioning, and interviewer ratings of participant suffering.
RESULTS: PCBD and PGD trajectories determined by growth mixture modeling, each captured three primary outcomes: resilience, moderate-improving symptoms, and prolonged-stable symptoms. The PGD solution also identified trajectories of increasing and decreasing distress: prolonged-worsening and acute-recovering symptoms. Prediction of 25-month outcomes indicated differences conforming to the severity of PGD symptoms, and the prolonged-worsening trajectory was associated with the worst adjustment.
CONCLUSIONS: PGD symptoms were more differentiated, better-captured psychopathology, and other outcomes and were more sensitive to change over time compared to PCBD.
Background: A distinct grief-specific disorder is included in the ICD-11. Lack of clarity remains regarding whether different proposed diagnostic criteria capture similar or different diagnostic entities. Our aim was to examine the specificity of four proposed diagnostic criteria-sets for pathological grief in a population-based sample.
Methods: Participants were 206 conjugally bereaved elderly Danes (59% female; mean age = 72.5 years, SD = 4.2; range 65–81) who completed self-report questionnaires six months post-loss. The main measure was the Danish version of Inventory of Complicated Grief-Revised.
Results: Results indicate substantial agreement between Prolonged Grief Disorder (PGD), Persistent Complex Bereavement Disorder (PCBD) and ICD-11-PGD (kappa's = 0.69–0.84), which found 6–9% of cases tested positive for pathological grief. Complicated Grief (CG) was partly in agreement with the three other symptom-diagnostic tests (kappa's = 0.13–0.20), and the prevalence-rate of pathological grief was 48%.
Limitations: The low response-rate of 39%. The selective inclusion of data >=6 months post-loss prevents a comparison of acute and prolonged grief reactions. Using self-reported data, not diagnostic interviews, challenges the validity of our findings. Using a sample of elderly people may limit the generalizability of our results to other age groups.
Conclusion: We suggest that PGD, PCBD and ICD-11-PGD may be more discriminative in identifying a specific grief-related psychopathology, while CG may identify a broader set of grief reactions.
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.
Brain death has specific implications for organ donation with the potential for saving several lives. Awareness on maintenance of the brain dead has increased over the last decade with the progress in the field of transplant. The diagnosis of brain death is clinical and can be confirmed by apnea testing. Ancillary tests can be considered when the apnea test cannot be completed or is inconclusive. Reflexes of spinal origin may be present and should not be confused against the diagnosis of brain death. Adequate care for the donor targeting hemodynamic indices and lung protective ventilator strategies can improve graft quality for donation. Hormone supplementation using thyroxine, antidiuretic hormone, corticosteroid and insulin has shown to improve outcomes following transplant. India still ranks low compared to the rest of the world in deceased donation. The formation of organ sharing networks supported by state governments has shown a substantial increase in the numbers of deceased donors primarily by creating awareness and ensuring protocols in caring for the donor. This review describes the steps in the establishment of brain death and the management of the organ donor. Material for the review was collected through a Medline search, and the search terms included were brain death and organ donation.
OBJECTIVES: The objective was to promote evidence-based practice in screening for delirium in patients in the palliative care ward of a cancer hospital in Shanghai.
INTRODUCTION: Delirium is common but under recognized among patients in palliative care settings. Early detection is essential for timely management. Practice guidelines recommend an initial screening at first contact, followed by continuous screening.
METHODS: The Joanna Briggs Institute's three-phase Practical Application of Clinical Evidence System and the Getting Research into Practice audit and feedback tool were used to enhance evidence-based practice. In phase 1, four audit criteria were developed and a baseline audit was conducted. In phase 2, barriers to compliance were identified, and strategies were adopted to promote best practice. In phase 3, a follow-up audit was conducted.
RESULTS: In the baseline audit, no delirium screening was performed, either on admission or regularly during hospitalization, hence compliance with these two audit criteria was 0%. Two out of 18 nurses had received training in delirium management, however neither had been trained to use the delirium screening tool. Compliance with the two criteria for nurse training was 11% and 0%, respectively. Four barriers were identified, including lack of a standardized screening tool, lack of a standardized screening procedure, inadequate knowledge on the part of the nurses, and potential inconsistencies between nurses in the rating of screening criteria. After applying strategies to address these barriers, compliance with the four audit criteria was 100%, 100%, 72%, and 72%, respectively, in the follow-up audit.
CONCLUSIONS: Best practice in delirium screening was successfully established in the ward.
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.
The death of a loved one is a stressful experience that can lead to the onset of a range of mental disorders, including major depressive disorder (MDD) and complicated grief (CG). CG is a disorder characterized by persistent and impairing grief symptoms (e.g., yearning, preoccupation with the deceased). Though MDD and CG frequently co-occur, factor-analytic studies and treatment research support their classification as separate disorders. In this chapter, we review biological, psychological, and loss-related risk factors for CG in relationship to MDD. Some of these factors appear to be shared by both disorders (e.g., factors associated with poor stress-regulation and coping). However, some factors appear specific to CG (e.g., the loss of an attachment figure). We then discuss research pertinent to the clinical management of both disorders. Differential diagnosis of MDD and CG among bereaved individuals is paramount, as these disorders appear to respond to different treatments.
BACKGROUND: Medicine has undergone substantial changes in the way medical dilemmas are being dealt with. Here we explore the attitude of Israeli physicians to two debatable dilemmas: disclosing the full truth to patients about a poor medical prognosis, and assisting terminally ill patients in ending their lives.
METHODS: Attitudes towards medico-ethical dilemmas were examined through a nationwide online survey conducted among members of the Israeli Medical Association, yielding 2926 responses.
RESULTS: Close to 60% of the respondents supported doctor-assisted death, while one third rejected it. Half of the respondents opposed disclosure of the full truth about a poor medical prognosis, and the others supported it. Support for truth-telling was higher among younger physicians, and support for doctor-assisted death was higher among females and among physicians practicing in hospitals. One quarter of respondents supported both truth-telling and assisted death, thereby exhibiting respect for patients' autonomy. This approach characterizes younger doctors and is less frequent among general practitioners. Another quarter of the respondents rejected truth-telling, yet supported assisted death, thereby manifesting compassionate pragmatism. This was associated with medical education, being more frequent among doctors educated in Israel, than those educated abroad. All this suggests that both personal attributes and professional experience affect attitudes of physicians to ethical questions.
CONCLUSIONS: Examination of attitudes to two debatable medical dilemmas allowed portrayal of the multi-faceted medico-ethical scene in Israel. Moreover, this study, demonstrates that one can probe the ethical atmosphere of a given medical community, at various time points by using a few carefully selected questions.
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.
Despite education and professional preparation, age and diagnosis discrimination persists in health care. A case scenario describes discrimination that could have resulted in untimely death without advocacy and intervention by 1 informed professional. Nurses must identify their own attitudes and behaviors associated with age, diagnosis, and their role within the interprofessional team to identify when discrimination may be occurring and claim their responsibility as advocate to ethically intervene on behalf of patients and families when appropriate.
This study investigates Chinese peopleâ€™s opinions about the diagnosis of grief and the factors associated with their opinions. Among 1041 participants who completed the online survey, over half (56.5%) agreed that grief could be a mental disorder under certain circumstances, such as harm to self or others, functional impairment, and persistent grief. Primary reasons against the diagnosis were that grief is normal and its intensity decreases over time. A small proportion of opponents also expressed concerns about stigmatization resulting from labeling grief as being pathological. Younger, male, and full-time employed adults tended to support diagnosing grief as a mental disorder.
Persistent complex bereavement disorder (PCBD) is a disorder of grief included in DSM-5. Prolonged grief disorder (PGD) is included in ICD-11. Few studies have evaluated and compared criteria sets for DSM-5 PCBD and ICD-11 PGD. The current study explored and compared the dimensionality, prevalence rates, diagnostic agreement, concurrent validity, and socio-demographic and loss-related correlates of both criteria sets. Self-reported data were available from 551 bereaved individuals. Confirmatory factor analysis showed that for DSM-5 PCBD-symptoms, a three-factor model with distinct but correlated factors fit the data well; for ICD-11 PGD-symptoms a one-factor model yielded adequate fit. The prevalence of probable DSM-5 PCBD (8.2%) was significantly lower than ICD-11 PGD (19.2%). Both DSM-5 PCBD and ICD-11 PGD were significantly associated with concurrent overall grief and depression, and varied as a function of education and time since loss. ICD-11 PGD prevalence rates went down and agreement with PCBD-caseness went up, when heightening the number of symptoms required for an ICD-11 PGD diagnosis. This study was limited by its reliance on self-reported data and grief symptoms were derived from two scales. That notwithstanding, findings provide further evidence that differences exist between disturbed grief criteria in DSM-5 and ICD-11 that may negatively impact research and care.
OBJECTIVE: As advances in prenatal diagnosis increasingly enable detection of life-limiting conditions, end-of-life care may start before birth. Termination of these pregnancies may have been default management, but in the Republic of Ireland, where termination is not a legal option, skilled experience in caring for mothers who continue their pregnancies has developed. This study examines the lived experience of four such mothers.
METHOD: A qualitative study was designed using interpretive phenomenological analysis, which examined the maternal experience of continuing pregnancy with a prenatal diagnosis of anencephaly. Four mothers participated in semi-structured interviews on their experience of pregnancy and delivery of a baby with anencephaly.
RESULTS: A profoundly emotional journey represented an adaptive grieving process, which culminated in rich experiences of transformative growth for all the parents. The parents' relationship with their caregivers facilitated this process and the development of a meaningful parenting relationship with their babies. This positive finding coexists alongside a parallel experience of ongoing deep sense of loss and sadness.
CONCLUSION: Perinatal palliative care for those with a prenatal lethal diagnosis is a positive life experience for some mothers. The role of relationship with healthcare professionals is vital to the process and consideration must be given to a comprehensive multi-disciplinary team approach.
Rationale: Dyspnea is a common and distressing physical symptom among patients in the intensive care unit, which may be underdetected and undertreated.
Objective: To determine the frequency of dyspnea relative to pain, the accuracy of nurses and personal caregiver dyspnea ratings relative to patient-reported dyspnea, and the relationship between nurse-detected dyspnea and treatment.
Methods: An observational study of patients (n=138) hospitalized in a medical intensive care unit (MICU). Nurses and patientsâ€™ personal caregivers at the bedside reported on their perception of patientsâ€™ symptoms.
Measurements and Main Results: Dyspnea was assessed by patients, caregivers, and nurses with a numerical rating scale. Across all three raters, the frequency of moderate-to-severe dyspnea was similar or greater than that of pain (p < .05 for caregiver and nurse ratings). Personal caregiversâ€™ ratings of dyspnea had substantial agreement with patient ratings ( = 0.65, p <0.001), but nursesâ€™ ratings were not significantly related to patient ratings ( = 0.19, p = 0.39). Nurse detection of moderate-to-severe pain was significantly associated with opioid treatment (OR = 2.70, 95% CI = 1.10 to 6.60, p = 0.03); however, nurse detection of moderate-to-severe dyspnea was not significantly associated with any assessed treatment.
Conclusions: Dyspnea was reported at least as frequently as pain among the sampled MICU patients. Personal caregivers had good agreement with patient reports of moderate-to-severe dyspnea. However, even when detected by nurses, dyspnea appeared to be undertreated. These findings suggest the need for improved detection and treatment of dyspnea in the MICU.
The first German interdisciplinary S3-guideline on the diagnosis, therapy and follow-up of patients with endometrial cancer was published in April 2018. Funded by German Cancer Aid as part of an Oncology Guidelines Program, the lead coordinators of the guideline were the German Society of Gynecology and Obstetrics (DGGG) and the Gynecological Oncology Working Group (AGO) of the German Cancer Society (DKG).
Purpose: Using evidence-based, risk-adapted therapy to treat low-risk women with endometrial cancer avoids unnecessarily radical surgery and non-useful adjuvant radiotherapy and/or chemotherapy. This can significantly reduce therapy-induced morbidity and improve the patient's quality of life as well as avoiding unnecessary costs. For women with endometrial cancer and a high risk of recurrence, the guideline defines the optimal extent of surgical radicality together with the appropriate chemotherapy and/or adjuvant radiotherapy if required. An evidence-based optimal use of different therapeutic modalities should improve the survival rates and quality of life of these patients. This S3-guideline on endometrial cancer is intended as a basis for certified gynecological cancer centers. The aim is that the quality indicators established in this guideline will be incorporated in the certification processes of these centers.
Methods: The guideline was compiled in accordance with the requirements for S3-level guidelines. This includes, in the first instance, the adaptation of source guidelines selected using the DELBI instrument for appraising guidelines. Other consulted sources included reviews of evidence, which were compiled from literature selected during systematic searches of literature databases using the PICO scheme. In addition, an external biostatistics institute was commissioned to carry out a systematic search and assessment of the literature for one part of the guideline. Identified materials were used by the interdisciplinary working groups to develop suggestions for Recommendations and Statements, which were then subsequently modified during structured consensus conferences and/or additionally amended online using the DELPHI method, with consent between members achieved online. The guideline report is freely available online.
Recommendations: Part 2 of this short version of the guideline presents recommendations for the therapy of endometrial cancer including precancers and early endometrial cancer as well as recommendations on palliative medicine, psycho-oncology, rehabilitation, patient information and healthcare facilities to treat endometrial cancer. The management of precancers of early endometrial precancerous conditions including fertility-preserving strategies is presented. The concept used for surgical primary therapy of endometrial cancer is described. Radiotherapy and adjuvant medical therapy to treat endometrial cancer and uterine carcinosarcomas are described. Recommendations are given for the follow-up care of endometrial cancer, recurrence and metastasis. Palliative medicine, psycho-oncology including psychosocial care, and patient information and rehabilitation are presented. Finally, the care algorithm and quality assurance steps for the diagnosis, therapy and follow-up of patients with endometrial cancer are outlined.
BACKGROUND: Fetal specialists support standardizing the practice of offering women palliative care for life limiting fetal diagnoses. However, there is little data available regarding what fetal specialists do in practice. Since 2003, our center has kept a database of all women referred for fetal complications.
METHODS: Retrospective electronic chart review of pregnant women between 2006 and 2012 using UCSD's Fetal Care and Genetics Center referral database. Objectives were to determine: (I) how many high risk pregnancies referred to the University of California San Diego Medical Center (UCSD) over a 6-year period have potentially life limiting fetal diagnoses; (II) pregnancy outcome; and (III) referral rate to perinatal palliative care.
RESULTS: Between July 2006 and July 2012, 1,144 women were referred to UCSD's Fetal Care and Genetics Center, a tertiary care center. Of that cohort, 332 women (29%) were diagnosed prenatally with a potentially life limiting fetal diagnosis. Most women were Hispanic or Latino, married, and had previous children. The median gestation at confirmed diagnosis was 19 weeks. Trisomy 13, Trisomy 18, and anencephaly comprised 21% of cases. The pregnancy outcome was determined in 95% cases: 56% therapeutic abortion, 16% intrauterine fetal demise, and 23% live birth. Only 11% of cases were referred to perinatal palliative care.
CONCLUSIONS: The vast majority of women with potentially life limiting fetal diagnoses are not referred to perinatal palliative care. Evaluation of how to integrate palliative care into high-risk obstetrics is needed.
Although heart failure is one of the most common clinical syndromes in medicine and has a high mortality rate, few patients have access to adequate palliative care for their clinical situation. Several trials have recently been published on the usefulness of starting palliative treatment along with cardiac treatment for patients with advanced heart failure. In this review, we analyse the aspects of diagnosing and controlling the symptoms of patients with advanced heart failure and provide a collection of clinical trials that have analysed the efficacy of a palliative intervention in this patient group. Physicians need to be equipped with strategies for recognizing the need for this type of intervention without it resulting in neglecting the active treatment of the patient's heart failure.
Parents, after learning of a life-limiting fetal condition (LLFC), experience emotional distress and must consider options that impact the remainder of the pregnancy, their future lives, and family members. For those who continue, little is known about their long-term presence or absence of regret about their choice, the reasons for this feeling, or its impact on their life. The aim of this research was to examine the concept of decision regret in parents who opted to continue a pregnancy affected by an LLFC. The contextual factors, conditions, and consequences surrounding the presence or absence of regret were analyzed. Data were retrieved from a cross-sectional study using the Quality of Perinatal Palliative Care and Parental Satisfaction Instrument. Participants were parents (N = 405) who experienced a life-limiting prenatal diagnosis and opted to continue their pregnancy. Secondary data analysis examined qualitative responses (121/402) to an item addressing regret. Dimensional analysis was used to examine data, identifying context, conditions, and consequences associated with the presence or absence of regret. Absence of regret was articulated in 97.5 percent of participants. Parents valued the baby as a part of their family and had opportunities to love, hold, meet, and cherish their child. Participants treasured the time together before and after the birth. Although emotionally difficult, parents articulated an empowering, transformative experience that lingers over time.