Palliative care (PC) focuses on caring for the whole person, from birth to death, while managing symptoms and helping to navigate medical complexities. Care does not stop at the time of death, however, as assisting patients, families, and fellow clinicians through grief and bereavement is within PC's purview. Unfortunately, many clinicians feel unprepared to deal with these topics. In this article, PC and hospice clinicians define and explain bereavement, distinguish normative grief from pathological grief, offer psychometrically sound scales to screen and follow those suffering from grief, and discuss the interaction between grief and bereavement and the physical and mental health of those who are left behind after the death of a loved one.
Background: While grief research has focused on death-related losses and distressed outcomes, contemporary findings suggest that role losses can lead to grief, and growth can accompany grief. The current study aimed to replicate and extend the Papa, Lancaster, & Kahler, 2014 study by: (1) assessing common loss responses (prolonged grief, major depression, posttraumatic stress) and role centrality among bereaved, divorced, and unemployed individuals, and (2) exploring posttraumatic growth and stress appraisals among loss groups.
Method: A cross-sectional online survey was completed by 372 recently bereaved, divorced, and unemployed individuals. Exploratory factor analysis assessed common loss responses in the bereaved group. In the sample, multiple regressions assessed the relationship between role centrality, stress appraisals, and outcome variables (prolonged grief, posttraumatic growth); correlational analysis assessed the relationship between posttraumatic growth and psychopathology variables; qualitative analysis assessed examples of posttraumatic growth.
Results: A subset of each loss group reported prolonged grief and posttraumatic growth. Prolonged grief was a distinct factor from major depression and posttraumatic stress. Role centrality and stress appraisals were significantly associated with outcome variables. There was a weak, positive relationship between posttraumatic growth and psychopathology variables.
Limitations: Limitations included convenience sampling and a cross-sectional study design, which precluded assessing responses over time. Strengths included replicating existing literature and incorporating a strength-based measure.
Conclusions: Prolonged grief can emerge from death-related loss and role loss. Also, posttraumatic growth can accompany prolonged grief. In clinical practice, loss can be conceptualized broadly beyond bereavement and addressed with the potential for posttraumatic growth.
In few periods in human history have bereavement and grief been on so many people's minds as they are today. As the coronavirus disease 2019 (COVID-19) ravages the world, we have seen many perish in a short time. Many have died alone because of requirements for physical distancing. Even more will succumb as COVID-19 continues to spread. Moreover, deaths from other causes, numbering over 50 million annually, are also happening amid physical distancing and other COVID-19-related challenges. The pandemic is affecting the way terminally ill patients are being cared for, when and how people are dying of other causes, and how bodies are being handled and bereavement rituals performed. The bereaved are required to grieve without the support of usual social and cultural rituals. Grieving is further encumbered by cascading life stressors deriving from policies needed to mitigate the pandemic. Though we are often heartened by human resilience in response to death and other hardships, for some, the burden of this pandemic will be too much. Among other mental health problems, we will likely see an increase in prolonged grief disorder. In this commentary, we review the new diagnosis of prolonged grief disorder and outline why we might anticipate increased rates of this condition on the heels of COVID-19, especially among older persons. We suggest ways we might mitigate this emerging problem.
Background: Bereaved individuals are known to have greater health risks, such as insomnia, excessive alcohol intake, and depression. However, few studies have investigated the relation between these risks and bereavement outcomes, namely complicated grief (CG) and major depressive disorder (MDD). This study aimed to assess the relation between insomnia, changes in alcohol consumption, and CG or MDD.
Methods: A cross-sectional, self-report questionnaire survey was conducted between May and July 2014 on 20 acute hospitals, 133 inpatient palliative care units (PCUs), and 22 home hospice services. Questionnaires were sent to the bereaved family members identified by each institution.
Results: Data were obtained from 814, 7,291, and 1,018 family members from acute hospitals, PCUs, and home hospice services, respectively. Significant associations were found between CG or MDD and all sleep condition symptoms (OR: 1.48-12.88; all p<0.0001) and between changes in alcohol intake (OR: 1.63-3.55; all p<0.0001).
Limitations: The majority were family members who had lost a loved one to cancer in a PCU, the psychological health of nonresponders was unavailable, the results were based on self-report data, and no clinical assessment interviews were done; this could limit the generalizability of the findings.
Conclusions: Overall, 14% and 17% of the respondents reported increased and decreased alcohol consumption, respectively, and 46–61% reported experiencing insomnia. Interestingly, both increase and decrease in alcohol intake after bereavement were risk factors of possible CG or MDD. These results suggest that assessing sleep conditions and alcohol consumption might help prevent severe psychological impairments in bereaved individuals.
Objective: Grief reactions in bereaved caregivers of cancer patients have been identified individually as distinct prolonged grief disorder (PGD)- and major depressive disorder (MDD)-symptom trajectories, but no research has examined whether patterns of change (trajectories) for PGD and MDD symptoms synchronize during bereavement. We conducted a secondary analysis study to investigate the construct distinctiveness of PGD and MDD by simultaneously identifying and examining similarities and differences between bereaved caregivers’ PGD- and depressive-symptom trajectories from immediately postloss through 2 years later.
Methods: PGD and depressive symptoms were measured for 849 cancer patients’ caregivers over their first 2 years of bereavement using 11 grief-symptom items of the Prolonged Grief-13 scale (P-11) and the Center for Epidemiologic Studies-Depression (CES--D) scale, respectively. PGD- and depressive-symptom trajectories were identified using latent class growth analysis with continuous latent-class indicators (total PG-11 and CES-D scores). Concordance of caregiver participants’ membership in PGD- and depressive-symptom trajectories was examined by a percentage and a kappa value.
Results: Five distinct symptom trajectories were identified for both PGD and MDD, with four shared trajectories (endurance, transient-reaction, resilience, and prolonged-symptomatic) having different prevalence rankings. Nonetheless, unique trajectories were identified for PGD (potential recurrence) and depressive symptoms (chronically distressed), respectively. Concordance between membership in PGD- and depressive-symptom trajectories was moderate (61.3%, kappa [95% CI]: 0.49 [0.44, 0.53]).
Conclusion: GD and MDD are related but distinct constructs indicated by the unique trajectories identified for each, different prevalence rankings for PGD- and depressive-symptom trajectories, and moderate concordance between membership in PGD- and depressive-symptom trajectories, respectively.
Grief is a common, instinctive, natural reaction that occurs following the loss of a loved one. This human experience is universal and will affect most people during a lifetime and cause a range of emotional and physical distress that can feel overwhelming and intolerable. In late life especially, people are exposed to an increasing number of losses and often grieve multiple losses at the same time. Death of a spouse is thought to be the most common and difficult loss in older adults, with nearly one-third of those aged 65 and older being widowed. Bereavement has been associated with a deterioration in mental health and physical health and thus clinicians need to be aware of the risk factors as well as the principles for treatment. This chapter explores grief in older adults including the impact grief has on an individual, the factors of “normal” grief and bereavement, complicated grief, mental health consequences of bereavement, and evidence-based practices for treatment.
Traditional Chinese art practices such as brush painting and calligraphy are thought to promote self-development through holistically engaging both physical and mental health. This pilot study investigated the beneficial effects of a community-based self-help group incorporating Chinese art practices as a culturally adapted bereavement intervention. Twenty-six Chinese parents aged over 49 years and who had lost their only child participated in a 20-session Chinese brush painting group over a 6-month period. Ten bereaved parents from the same community who did not participate in the art course but received living support were recruited as a control group. Compared with the control group, the art practice group exhibited a pre-post intervention effect in terms of promoting positive affect and preventing deterioration of prolonged grief symptoms, particularly through the improvement of accessory grief symptoms (e.g., "emotional numbness due to the loss", and "feeling that life is unfulfilling, empty or meaningless after the loss"). No effect was found on negative affect. These findings indicate that a culturally adapted community-based art group may be an effective means of improving grief-related health.
Prolonged grief disorder, characterized by severe, persistent, and disabling grief, has recently been included in the International Classification of Diseases-11 (ICD-11). Emotional disturbances are central to such complicated grief responses. Accordingly, emotion regulation is assumed critical in the development, persistence and treatment of complicated grief. Yet, a comprehensive review on this topic is lacking. We conducted a systematic review (PROSPERO: CRD42017076061) searching PsychInfo, Web of Science and PubMed to identify quantitative research examining relationships between emotion regulation and complicated grief. Sixty-four studies on 7715 bereaved people were identified, focusing on a variety of emotion regulation strategies (i.e., experiential avoidance, behavioral avoidance, expressive suppression, rumination, worry, problem solving, cognitive reappraisal, positive thought, and mindfulness). Our synthesis showed strong evidence that experiential avoidance and rumination play a role in the persistence of complicated grief. More generally, surveys support positive associations between putative maladaptive emotion regulation strategies and complicated grief, and negative associations between putative adaptive emotion regulation strategies and complicated grief. Laboratory research yielded mixed results. Emotion regulation is critical in complicated grief, and in particular experiential avoidance and rumination form important targets in complicated grief treatments. We advise expanding current knowledge, by employing more advanced, intensive data collection methods and experiments across diverse samples. Increasing knowledge in this domain will improve clinical practice.
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.
The COVID-19 pandemic is anticipated to continue spreading widely across the globe throughout 2020. To mitigate the devastating impact of COVID-19, social distancing and visitor restrictions in health care facilities have been widely implemented. Such policies and practices, along with the direct impact of the spread of COVID-19, complicate issues of grief that are relevant to medical providers. We describe the relationship of the COVID-19 pandemic to anticipatory grief, disenfranchised grief, and complicated grief for individuals, families, and their providers. Furthermore, we provide discussion regarding countering this grief through communication, advance care planning, and self-care practices. We provide resources for health care providers, in addition to calling on palliative care providers to consider their own role as a resource to other specialties during this public health emergency.
Complicated grief (CG) poses significant physical, psychological, and economic risks to bereaved family caregivers. An integrative review of the literature published 2009-2018 on CG associated with caregiving was performed using PubMed, PsychINFO, and Web of Science. The search returned 1428 articles, of which 32 were included in the review. Sixteen studies described risk and protective factors and 16 described interventions for CG. Caregiver-related risk factors included fewer years of education, depression, anxiety, poor physical health, and maladaptive dependency and attachment traits. Additional risk factors included lower perceived social support, family conflict at end-of-life, and family having difficulty accepting death. Care recipient-related risk factors are younger age, fear of death, and place of death. Protective factors included hospice utilization in reducing fear of death, high pre-bereavement spiritualty, and satisfaction with palliative care. Complicated grief treatment was the most widely-studied intervention. Social Workers and other clinicians can use this information to identify family caregivers at increased risk for CG and refer or implement an early intervention to lessen its impact.
The current article focused on examining the potential benefits of the End-of-Life (EoL) informal caregiving, communication, and ritualistic behaviors in adaptation to the conjugal bereavement across two different cultural-background contexts: France and Togo, West Africa. The investigation adopted a transnational approach including a total of 235 bereaved spouses. Despite the variation in the length of time since death, no significant difference was found between the Togolese and French bereaved with respect to the level of complicated grief symptoms. However, the Togolese bereaved perceived a significant postloss growth, fostered by EoL communication with the dying and the performance of ritualistic behaviors. In the French sample, bereaved individuals who had experienced more intimate communication with their dying spouse reported a high level of postloss growth. Moreover, findings showed that EoL caregiving without ritualistic support or communication is associated with poor postbereavement outcomes. These findings suggest a clinical need to promote informal caregiving to the dying, communication with the dying, and ritualistic support during the process of dying as entangled components of EoL care.
The current study examined Posttraumatic Growth (PTG) experienced by bereaved pet owners in the United States, French-Canada, Japan, and Hong Kong following the death of their pet. Using qualitative methodology, we analyzed responses of participants who answered “yes” to a question about experiencing PTG and explored to what extent the cross-cultural responses mapped onto the five factors of the Posttraumatic Growth Inventory (PTGI). For the U.S. sample, 58% of responses mapped onto the PTGI. For French-Canada, 72% of responses mapped onto the PTGI. For Japan, 50% of responses mapped onto the PTGI and for Hong Kong, 39% of responses mapped onto the PTGI. We also explored emergent categories related to PTG for individuals who have lost a pet and discerned the unique aspects for PTG across cultures.
The present study examines how meaning and belief in God or god(s) is related to bereavement outcomes. Data from 299 participants residing in the United States indicated that the variables of search for meaning, presence of meaning, and belief in God or god(s) were significantly related to posttraumatic growth, complicated grief, and psychological distress. Results from this study can be used to identify appropriate clinical strategies for mental health practitioners working with bereaved clients and will expand the breadth of literature on bereavement with atheist populations in the United States.
Knowledge about what psychological characteristics underlie complicated grief (CG) is limited. The current study examined the five-factor personality traits in 81 bereaved adults with (n = 51) and without (n = 30) CG. A trained doctoral-level clinician evaluated participants using a structured, diagnostic psychiatric interview, and they completed self-report measures of grief and personality. A multiple regression model indicated that higher levels of neuroticism were associated with greater CG symptom severity, implicating neuroticism in the development of CG. Future prospective studies confirming it as a risk factor for the development of CG are warranted.
The impact of traumatic workplace death on bereaved families, including their mental health and well-being, has rarely been systematically examined. This study aimed to document the rates and key correlates of probable posttraumatic stress disorder (PTSD), major depressive disorder (MDD), and prolonged grief disorder (PGD) in family members following a workplace injury fatality. The hidden nature of the target population necessitated outreach recruitment techniques, including the use of social media, newspaper articles, radio interviews, and contact with major family support organizations. Data were collected using a cross-sectional design and international online survey. The PCL-C (PTSD), the PHQ-8 (MDD), and PG-13 (PGD) were used to measure mental health disorders. All are well-established self-report measures with strong psychometric qualities. Participants were from Australia (62%), Canada (17%), the USA (16%), and the UK (5%). The majority were females (89.9%), reflecting the gender distribution of traumatic workplace deaths (over 90% of fatalities are male). Most were partners/spouses (38.5%) or parents (35%) and over half (64%) were next of kin to the deceased worker. Most deaths occurred in the industries that regularly account for more than 70 percent of all industrial deaths-construction, manufacturing, transport, and agriculture forestry and fishing. At a mean of 6.40 years (SD = 5.78) post-death, 61 percent of participants had probable PTSD, 44 percent had probable MDD, and 43 percent had probable PGD. Logistic regressions indicated that a longer time since the death reduced the risk of having each disorder. Being next of kin and having a self-reported mental health history increased the risk of having MDD. Of the related information and support variables, having satisfactory support from family, support from a person to help navigate the post-death formalities, and satisfactory information about the death were associated with a decreased risk of probable PTSD, MDD, and PGD, respectively. The findings highlight the potential magnitude of the problem and the need for satisfactory information and support for bereaved families.
Purpose: Prior latent class analyses (LCA) have focused on people who were bereaved more than 6 months earlier. Research has yet to examine patterns and correlates of emotional responses in the first few months of bereavement. We examined whether subgroups could be identified among very recently (= 6 months) bereaved adults, based on their endorsement of symptoms of prolonged grief disorder (PGD), posttraumatic stress disorder (PTSD), and depression. Associations of class membership with overall disturbed grief, PTSD, and depression—assessed concurrently and at 6 months follow-up—were examined. Furthermore, we examined differences between classes regarding socio-demographics, loss-related, and cognitive behavioural variables.
Methods: PGD, PTSD, and depression self-report data from 322 Dutch individuals bereaved = 6 months earlier were subjected to LCA; N = 159 completed the follow-up assessment. Correlates of class membership were examined.
Results: Three classes were identified: a low symptom class (N = 114; 35.4%), a predominantly PGD class (N = 96; 29.8%), and a high symptom class (N = 112; 34.8%). PGD, PTSD, and depression scores (assessed concurrently and at 6 months follow-up) differed significantly between classes, such that low symptom class < predominantly PGD class < high symptom class. Being a woman, younger, more recently bereaved, experiencing deaths of a partner/child and unnatural losses, plus maladaptive cognitions and avoidance behaviours were associated with membership of the pervasive symptom classes.
Conclusion: In the first 6 months of bereavement, meaningful subgroups of bereaved people can be distinguished, which highlights the relevance of early detection of people with elevated bereavement-related distress and offering them preventive interventions that foster adaptation to loss.
OBJECTIVE: Bereavement can result in unresolved and prolonged grief, often termed prolonged grief disorder (PGD). The impact of PGD on cognitive functioning is poorly understood. The aim of the study was to compare the cognitive decline, assessed by repeated measures of different cognition domains, between persons with normal and PGD and a non-grieving reference population in a 7-year follow-up study.
METHODS: The study sample comprised 3126 non-demented persons, mean age: 64 years, of the Rotterdam Study. Participants were classified into three groups: no grief (reference group, N = 2,582), normal grief (N = 418), and prolonged grief disorder (N = 126). Participants were assessed with the Complicated Grief Inventory and underwent cognitive testing (Mini-Mental State Examination [MMSE], Letter-Digit Substitution test, Stroop test, Word fluency task, Word learning test). Analyses were adjusted for baseline cognition and depressive symptoms; persons with major depressive disorders were excluded.
RESULTS: Compared with the reference group, participants with PGD showed a decrease in global cognitive function, MMSE scores, and World learning test (immediate and delayed) over time. Participants with normal grief did not show a stronger cognitive decline in any of cognitive tests than the reference group.
CONCLUSIONS: Participants with PGD showed a stronger cognitive decline than the reference group during 7 years of follow-up. This suggests that PGD is a risk factor for cognitive decline, but this study cannot detect the psychobiological mechanism underlying this longitudinal association.
Complicated grief (CG) is a debilitating syndrome characterized by persisting and intense distress and impairment after the death of a loved one. The biological mechanisms associated with this syndrome remain unclear but may involve neurobiological pathways implicated in the stress response and attachment systems. The neuropeptide oxytocin has been implicated in attachment and social behaviour, and loss of social bonds has been associated with disruptions in oxytocin signalling. Furthermore, prior research has reported associations between circulating oxytocin and other mental illnesses, including depression. The present pilot study aimed to examine plasma levels of oxytocin in bereaved adults with primary CG (n = 47) compared to age- and sex-matched bereaved individuals with primary Major Depressive Disorder (MDD) (n = 46), and bereaved individuals without any mental disorder (n = 46). In unadjusted analyses comparing groups according to primary diagnosis, oxytocin levels were significantly higher for primary CG compared to primary MDD (p = 0.013), but not compared to bereaved controls (p = 0.069). In adjusted regression models, having a primary or probable (Inventory of Complicated Grief = 30) diagnosis of CG was associated with significantly higher oxytocin levels (p = 0.001). While additional research is needed, findings from our pilot study provide preliminary support for recent conceptualizations of CG implicating a role for oxytocin and the attachment system. Importantly, these findings contribute to the limited current knowledge about possible biological correlates of CG.
Persistent complex bereavement (PCBD) was entered to DSM-5. No studies have yet examined the nature, prevalence, prognostic validity, and underlying mechanisms of PCBD symptom patterns in recently bereaved people. Knowledge on these issues could improve the early identification and treatment of disturbed grief. Latent class analysis was used to identify subgroups characterized by different PCBD symptom patterns among recently (=6 months) bereaved adults (n = 476). In a subgroup (n = 251), we assessed associations of class membership with PCBD severity and functional impairment assessed 3 years later. Associations between class membership and sociodemographic and cognitive-behavioral variables were also examined. We identified a resilient (50.0%), separation distress (36.1%), and high PCBD symptoms (13.9%) class. Class membership had prognostic value as evidenced by associations with PCBD severity and functional impairment assessed 3 years later. Deaths of partners/children, unexpectedness of the loss, and maladaptive cognitions and avoidance behaviors were also associated with membership of the pervasive symptom classes.