Background: End-of-life (EOL) conversations are highly important for patients living with life-threatening diseases and for their relatives. Talking about the EOL is associated with reduced costs and better quality of care in the final weeks of life. However, there is therefore a need for further clarification of the actual wishes of patients and their relatives concerning EOL conversations in an acute hospital setting.
Aim: The purpose of this study was to explore the wishes of patients and their relatives with regard to talking about the EOL in an acute hospital setting when living with a life-threatening disease.
Methods: This study is a qualitative study using semi-structured in-depth interviews. A total of 17 respondents (11 patients and six spouses) participated. The patients were identified by the medical staff in a medical and surgical ward using SPICT™. The interview questions were focused on the respondents’ thoughts on and wishes about their future lives, as well as on their wishes regarding talking about the EOL in a hospital setting.
Results: This study revealed that the wish to talk about the EOL differed widely between respondents. Impairment to the patients’ everyday lives received the main focus, whereas talking about EOL was secondary. Conversations on EOL were an individual matter and ranged from not wanting to think about the EOL, to being ready to plan the funeral and expecting the healthcare professionals to be very open about the EOL. The conversations thus varied between superficial communication and crossing boundaries.
Conclusion: The wish to talk about the EOL in an acute hospital setting is an individual matter and great diversity exists. This individualistic stance requires the development of conversational tools that can assist both the patients and the relatives who wish to have an EOL conversation and those who do not. At the same time, staff should be trained in initiating and facilitating EOL discussions.
STUDY AIMS: 1) To characterize distinct profiles of cancer caregivers' physical and mental health during the end-of-life caregiving period; 2) to identify the background and antecedent factors associated with the distinct profiles of caregivers; 3) to determine the relevance of caregiver profiles to the risk for developing prolonged grief symptoms.
DESIGN & METHODS: This study was a secondary analysis of spouses/partners (n = 198) who participated in the Cancer Caregiver Study. Latent profile mixture modeling was used to characterize caregiver health profiles from data collected prior to their spouse's death. Regression analyses were used to determine the impact of caregiver health profiles on the risk of developing prolonged grief symptoms (PG-13 scale).
RESULTS: Two health profiles were identified, one of which was comprised of a minority of caregivers (n = 49; 25%) who exhibited higher anxiety and depressive symptoms, greater health impact from caregiving, more self-reported health problems, and greater difficulty meeting physical demands of daily activities. Caregivers who were observed in this poorer health profile had significantly lower levels of active coping (p < 0.001) in adjusted models. Additionally, according to subsequent bereavement data, caregivers' preloss health profile was a significant predictor of developing prolonged grief symptoms (p = 0.018), controlling for caregivers' age (p = 0.040) and amount of active coping (p = 0.049), and there was a mediating effect of caregiver health on the relationship between active coping and prolonged grief symptoms.
CONCLUSIONS: Caregiving and bereavement should not be considered separately; caregivers adapt to bereavement with the resources and coping attained throughout the life course, culminating in the experience of providing end-of-life care. Interventions aimed at supporting caregivers and bereaved persons should focus on maintaining physical and mental health during stressful life transitions, and especially during the period in which they are providing care to a spouse at end-of-life.
Faire reconnaître le rôle central des aidants profanes et rappeler le caractère indispensable de leur contribution fait aujourd’hui partie des principaux besoins que les aidants revendiquent explicitement, tant vis-à-vis des professionnels avec qui ils collaborent, que vis-à-vis des pouvoirs publics. Dans un contexte de plus forte sensibilisation à leur égard, c’est aussi l’ambition de ce numéro de Gérontologie et société, qui se propose à la fois de définir et de renseigner ce que recouvre la notion de proches aidants auprès de personnes âgées mais également de comprendre la nature de leurs engagements et de leurs expériences. Comment ces aidants pensent-ils leur rôle et envisagent-ils leur situation ? Quels sont les ressorts et les logiques sociales qui déterminent leurs investissements et leurs manières d’aider ? Dans quelle mesure sont-ils épaulés et comment s’accommodent-ils des services qui leurs sont proposés ? Sur la base d’une sélection de 9 articles, retenus pour leur diversité d’approche disciplinaire et territoriale, les contributions présentes dans ce numéro offrent un témoignage concret du profil hétérogène de ces aidants, de l’extrême diversité des tâches qu’ils accomplissent mais aussi des difficultés qu’ils sont susceptibles de rencontrer au quotidien. Plus fondamentalement encore, ils interrogent la situation d’aide, l’intimité des relations entre aidants et aidés et démontrent l’impérieuse nécessité à poursuivre les efforts pour soutenir ces proches aidants dans leur travail quotidien d’accompagnement.
A Nova Scotia man is free to seek a medically assisted death in the next few days after the province’s Court of Appeal refused to extend a temporary injunction granted to his wife, who claimed that he was exaggerating his illness and did not qualify.
The case, which has led the anonymous couple to separate after a marriage of nearly 50 years, comes as Canada’s assisted dying law is in a state of flux. The country’s Supreme Court has declared the current law overly restrictive in that it requires two doctors to certify that the patient faces a “reasonably foreseeable” death from a condition, as well as unbearable suffering.
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Background: This study compares a longitudinal population-based sample of spouses bereaved by suicide and those bereaved by other sudden deaths to determine if suicide-bereaved spouses (SBS) experience greater rates of physician-diagnosed mental disorders.
Methods: First, married individuals whose spouse died by suicide, sudden natural death (SND) and unintentional injury (UI) were compared to non-bereaved matched cohorts to determine if there were differences in mental disorder rates between bereavement groups and non-bereaved matches. Second, SBS (n = 365), spouses bereaved by SND (n = 1000), and spouses bereaved by UI (n = 270), were compared using inverse probability treatment weighting and generalized estimating equations to calculate relative rates of mental disorders 5 years before/after death.
Outcomes: All bereaved cohorts had higher rates of mental disorders compared to non-bereaved cohorts. SBS had the greatest rate of depression post-bereavement (50·96%), followed by UI (38·52%) and SND (33·70%) spouses. When comparing bereavement cohorts, a significant group-by-time interaction (P = 0·047) revealed the rate change for depression was significantly different between suicide and UI-bereaved spouses, with SBS having higher rates of depression before bereavement. SBS had increased rates of any mental disorder both pre (ARR = 1·35, 95% CI = 1·03-1·18, P<·05) and post spousal death (ARR = 1·24, 95% CI = 1·03-1·45, P<·05) when compared to UI spouses signifying pre-existing mental disorders. Post-bereavement, SBS had greater rates of depression only when compared to SND-bereaved spouses (ARR = 1·31, 95% CI = 1·10-1·55, P<·01). Interpretation: SBS have the greatest rates of depression and any mental disorder before the death of their spouse, suggesting suicide bereavement may be unique. Sudden spousal bereavement is a vulnerable time for mental disorders.
Research suggests variation in how grief develops across time, and gender may account for some of this variation. However, gender differences in growth patterns of the newly codified ICD-11 prolonged grief disorder (PGD) are unknown. This study examined gender-specific variances in grief trajectories in a registry-sampled cohort of 857 spousal bereaved individuals (69.8% female). Participants completed self-report questionnaires of PGD symptoms at 2, 6, and 11 months post-loss. Using Growth Mixture Modeling, four PGD trajectories emerged: resilient characterized by low symptoms (64.4%), moderate-stable characterized by moderate symptoms (20.4%), recovery characterized by elevated symptoms showing a decrease over time (8.4%), and prolonged grief characterized by continuous elevated symptoms (6.8%). Similar proportions of men and women comprised the four trajectories. Gender influenced the parameter estimates of the prolonged grief trajectory as men evidenced more baseline symptoms (higher intercept) than women did and a decreasing symptom-level (negative slope), while women showed symptom-increase over time (positive slope). The prolonged grief trajectory captured the largest proportion of probable PGD cases in both genders. Low optimism and low mental health predicted membership in this class. Altogether, the absolute majority of both men and women followed a low-symptom resilient trajectory. While a comparable minority followed a high-symptom prolonged grief trajectory, men and women within this trajectory expressed varying symptom development. Men expressed prolonged grief as an acute, decreasing reaction, whereas women showed an adjourned, mounting grief reaction. This study suggests that gender may influence symptom development in highly distressed individuals across early bereavement.
Purpose: The aim of this study was to gain more insight into the psychosocial well-being of the recently bereaved spouses who took care of their partners with cancer.
Method: A qualitative study was developed, taking a phenomenological approach. Eleven former caregivers and spouses of patients who died of cancer at, or after, the age of 64, participated in individual in-depth interviews. Only caregivers who were bereaved for a minimum of three months and maximum of one year were interviewed. The analysis of the data was based on the Qualitative Analysis Guide of Leuven.
Results: The first moments of bereavement included feelings of disbelief, regret and relief. A feeling of being overwhelmed during this time was reported by some, others sought distraction from their grief. Loneliness, emotional fluctuations and a sense of appreciation for the support of loved ones were dominant themes. Also, gratitude and the importance of consolation played a role in the participants' well-being. When participants addressed the matter of moving forward in life, most explained how they wanted to keep the memories of their partner alive while rebuilding their lives.
Conclusions: The present study offers insight into the experiences of the bereaved spousal caregiver and highlights the need of social support during the bereavement period. All participants expressed loss-oriented and restoration-oriented coping strategies. Also, loneliness is considered a dominant feeling throughout the bereavement period. Social contact can ease these feelings of loneliness through providing either distraction or possibilities to share the burden. This paper emphasized the importance of improving access to healthcare professionals during bereavement.
Population ageing has rapidly increased the number of people requiring end-of-life care across the globe. Governments have responded by promoting end-of-life in the community. Partly as a consequence, older spouses are frequently providing for their partner’s end-of-life care at home, despite potentially facing their own health issues. While there is an emerging literature on young-old caregivers, less is known about spouse carers over 75 who are likely to face specific challenges associated with their advanced age and relationship status. The aim of this review, therefore, is to identify and synthesise the literature concerning the experiences of caregiver’s aged 75 and over whose partner is approaching end-of-life. We conducted a mixed-method systematic review and narrative synthesis of the empirical literature published between 1985 and May 2019, identified from six databases: Medline, PsychINFO, Cumulative Index to Nursing and Allied Health Literature, Embase, Sociological Abstracts and Social Service Abstracts. Hand searching and reference checking were also conducted. Gough’s Weight of Evidence and Morgan’s Feminist Quality Appraisal tool used to determine the quality of papers. From the initial 7819 titles, 10 qualitative studies and 9 quantitative studies were included. We identified three themes: 1) “Embodied impact of care” whereby caring was found to negatively impact carers physical and psychological health, with adverse effects continuing into bereavement; 2) “Caregiving spouse’s conceptualisation of their role” in which caregiver’s navigated their self and marriage identities in relation to their partner’s condition and expectations about gender and place; 3) “Learning to care” which involved learning new skills and ways of coping to remain able to provide care. We identified a recent up-surge in published papers about very old spousal caregivers, which now comprise a small, medium-quality evidence base. This review outlines a range of potential lines of inquiry for future research including further clarification of the impact of caregiving on the likelihood of mortality, the incidence of men and women providing end-of-life care amongst this age group, and the role of anticipatory grief in shaping their perceptions of their relationship and their own longevity.
Objective: Mechanical ventilation, a measure of life-sustaining treatment (LST), may not be helpful and can be devastating for patients with terminal illness. We explored the effects of demographic characteristics, attitude, subjective norms, and perceived behavioral control on the behavioral intentions of primary caregivers to withdraw LST of long-term ventilator-dependent patients.
Methods: Primary caregivers of ventilator-dependent patients in the respiratory care units of six hospitals participated in the study. A cross-sectional design including the domains of attitude, subjective norms, perceived behavioral control, and behavioral intention was adopted.
Results: Valid data for 99 participants were analyzed using logistic regression. Religious belief, a spousal relationship with the patient, item 5 in subjective norms, and item 5 in perceived behavioral control positively influenced the intention to withdraw patient LST.
Conclusions: Religious beliefs, a spousal relationship, perceived behavioral control (confidence in relieving patient suffering), and the opportunity of current favorable subjective norms are major determinants of the intention to withdraw patients’ LST.
Practice Implications: Shared decision-making with the kin and primary caregivers of long-term ventilator-dependent patients at the end of life is crucial.
BACKGROUND: Palliative nursing care provides the best possible quality of life (QoL) for patients who face life-threatening conditions, such as breast cancer, and their families. It seems that coping with breast cancer can affect couples' QoL. Hence, this study aimed to assess the potential role of ways of coping (WOC) in QoL among husbands of women with breast cancer.
METHOD: In this cross-sectional study, 150 men whose wives were affected by non-metastatic breast cancer and were at least 4 months post-diagnosis, were recruited. The Persian version of the WOC questionnaire (WOCQ) and the World Health Organization's QoL brief questionnaire (WHOQoL-BREF) were used to measure WOC and QoL. ThePearson correlation test was applied to assess bivariate correlation of the variables.
FINDINGS: A significant direct correlation was found between the total WHOQoL-BREF score and all subscales of WHOQ, except escape-avoidance coping (r=-0.017, P=0.830). Most dimensions of the WHOQoL-BREF and WOCQ subscales were correlated significantly and directly. Nevertheless, escape-avoidance coping had a significant indirect correlation with the physical dimension of WHOQoL-BREF (r=-0.220, P=0.007).
CONCLUSION: Findings indicated a need for coping-based interventions in palliative nursing to improve QoL in husbands of women with breast cancer.
BACKGROUND: Providing care for patients with advanced cancer is often the responsibility of the partner. Being confronted with an incurable cancer diagnosis can be highly disruptive for the patient's partner and can be considered a potentially traumatic event. However, most caregivers seem to adapt well during the process of providing care. This finding is in line with the concept of resilience in literature: a dynamic process of adapting well, resulting from the interplay between intrinsic and extrinsic resources and risks. Resilience is age-related, with the elderly population being higher in resilience as compared to the younger generation. However, resilience has been understudied in middle-aged caregivers.
AIM: To explore what intrinsic and extrinsic resources facilitate or hamper resilience in the middle-aged partner of a patient with incurable cancer.
METHODS: Nine middle-aged partners of patients who died at home of cancer were selected and interviewed in depth within the first year following the death of their partner. A thematic analysis utilizing an inductive approach was conducted.
FINDINGS: Resilience was challenged by the partner's diagnosis of incurable cancer. All participants made use of a set of interacting, caregiver-specific and context-related resources, facilitating a resilient process and leading to positive feelings and even personal growth. The partners demonstrated individual competences: adaptive flexibility, positivism, a sense of self-initiative and adaptive dependency. Furthermore, they relied on their context: cancer-related professionals and relatives. Context and situation interact continuously. The resulting dynamics were based on the context-availability, meaningful relationships and the patient's role.
CONCLUSION: A resilient trajectory results from an interplay between individual and contextual resources. To build resilience in middle-aged partners of patients with incurable cancer, health care professionals should address all available resources. Moreover, they should be aware of being part of the caregiver's context, a complex adaptive system that can be either resilience-supporting or -threatening.
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.
Context: We previously developed the reintegration model to describe the adjustment process for individuals at the end of life. However, caregivers and loved ones also require significant support and must work to reimagine their relationship with one another.
Objectives: We sought to develop a dyadic version of the reintegration model that delineates key parts of the adjustment process that occur between the patient and another significant person rather than as two separate individuals.
Methods: We refined an initial conceptual model of this dyadic process with findings from a narrative literature review on spousal dyadic mutuality. We assessed emergent themes regarding dyadic adjustment from the literature for their fit with our original reintegration model and through consensus discussion, applied the findings to a final proposed conceptual model of dyadic reintegration at the end of life.
Results: Examples of dyadic adjustment in the literature relate to the comprehension, creative adaptation, and reintegration processes described in the original reintegration model. Evidence also supported three substantive additions in the new dyadic model: (1) shared understanding that the harmony of the dyad is interrupted; (2) consideration of the "we" (the dyad) and the "I" (the individual) in mutual reflection to create a shared narrative; and (3) emphasis on relationship as a factor impacting adjustment processes.
Conclusions: Available evidence supports interdependent relationships between members of dyads for the three adaptation processes of comprehension, creative adaptation, and reintegration in the model. This dyadic reintegration model can be useful in clinical practice to support dyads facing life-limiting illness.
Introduction: Motor neuron disease (MND) is a progressive neuromuscular disorder that can have significant and debilitating impact on the affected patient and families. Spouses are the primary carers for persons with MND in India, and the life of the person with MND and their spouse is never the same after the diagnosis.
Aim: The objective was to explore the lived experience of spouses of persons diagnosed with MND.
Methods: A qualitative exploratory study with three-point interviews was conducted with spouse caregivers of two persons diagnosed with MND who were receiving treatment from a national tertiary referral care center for neurological disorders. All the patients were diagnosed as definite MND according to the modified El Escorial criteria. With the spouses, in-depth interviews were conducted at their home, lasting on an average of 1 hour using a semi-structured interview guide (prompts). Interpretative phenomenological analysis was used to derive themes from the interviews.
Results: The major themes emerged from the analysis were meaning of MND which contained the subthemes of delay in diagnosis and deterioration, psychological response across illness trajectory, relationship with the subthemes of changing roles in being acarer, marital relationship, to be seen as doing "right," and communication; adaptation with the subthemes of coping strategies and support system and life without the loved one.
Conclusion: The changes in the lives of spouses and in strategies for caring the partner with deterioration of symptoms in the illness trajectory are explained in this study. The palliative approach in the management of MND has to take into account, the experiences and needs of carers since care happens at home.
Purpose: Many patients with advanced cancer choose palliative chemotherapy. Considering its purpose of palliation and not treatment, it is important to consider the life of family caregivers. Family caregivers who experience bereavement undergo extreme stress, which is particularly high among patients’ spouses. The present study aims to clarify the experiences of the spouses of patients at the hospitals in Japan after the notification of palliative chemotherapy discontinuation until bereavement.
Method: We interviewed the spouses of 13 patients who received palliative chemotherapy using a semistructured interview guide. Each spouse was interviewed twice. The interviews were transcribed verbatim, and key concepts were identified using a grounded theory analytic approach.
Results: After the hospital's recommendation for palliative chemotherapy discontinuation, the spouses had “bewilderment over having to discontinue palliative chemotherapy” and experienced “difficulty in facing bereavement.” The spouses having “difficulty to give up hope for the patient's survival,” felt “bafflement over caregiving at the terminal stage,” which would be their responsibility in the future. Further, they had “hesitation in being honest to the patient” and were engaged in “knowing how to live with the patient until bereavement.“
Conclusion: Nurses need to encourage the patients and spouses to honestly express how they feel from the early stages of palliative chemotherapy. Furthermore, nurses should help spouses with how they face bereavement. This result may help prevent anticipatory grief, which may lead to excessive stress and emotional distress on the family caregivers.
Cancer impacts spouse caregivers, especially when couples engage in dyadic coping around the cancer. Communication is a key factor in this process. Our goals were to describe cancer-related communication between advanced cancer patients and their spouse caregivers, and to describe how dyadic communication patterns are related to caregivers' reported burden and preparedness for caregiving. Caregivers completed measures of caregiver burden and preparedness for caregiving. Then, the patient and caregiver were asked to interact with each other in two structured discussions: a neutral discussion and a problem discussion focused on cancer. Discussions were coded using the Rapid Marital Interaction Coding System (RMICS2). Caregivers reported moderate levels of preparation and burden. Greater caregiver hostility communication predicted higher levels of caregiver burden, whereas greater caregiver dysphoric affect communication predicted lower levels of caregiver burden. Whereas positivity was more common than hostility in couples' communication, patient hostility was a significant predictor of caregiver preparedness. Patient neutral constructive problem discussion was also associated with increased caregiver preparedness. Caregiver outcomes are an understudied component to dyadic cancer research. Our paper describes observational data on cancer-related communication between caregivers and advanced cancer patients and communication's influence on caregiver outcomes. This work provides the foundation for future evidence-based communication interventions that may influence both patient and caregiver outcomes.
This work aims to integrate previous research perspectives on terminal well-being decline and partner bereavement by investigating the codevelopment of life satisfaction in the years preceding the death of one partner. We analyzed longitudinal data from the German Socio-Economic Panel Study (N = 1,450 couples) and applied dyadic multilevel models to estimate both partners' trajectories of life satisfaction and to reveal the pathways of well-being transmission in couple members approaching [partner] death. Findings were compared with a propensity-score-matched control sample of couples in which neither partner died during the study. We found that to-be-deceased and to-be-bereaved partners experienced increasing disparities in their trajectories of life satisfaction in the years before [partner] death: Although both partners exhibited significant and accelerated declines in life satisfaction, these declines were more pronounced in to-be-deceased individuals. In the control sample, we also identified significant and accelerated declines in life satisfaction but these declines were less intense and they did not differ between partners. Regarding between-partner correlations, we observed that couples approaching [partner] death experienced weaker interdependencies in their declines of life satisfaction. Finally, and concerning the pathways of well-being transmission, we found that life satisfaction was significantly transmitted between partners and the strength of this effect did not differ between the samples. These findings suggest that the years before [partner] death are characterized by distinctive patterns of change and interdependence in life satisfaction. Future studies may explore the sources of increasing between-partner disparities in life satisfaction in an end-of-life relationship context.
Objective: Home-visit nurses play a key role in supporting the spouses of terminal cancer patients and encouraging positive perspectives of the caregiving experience. This study aimed to develop a scale to support nurses in self-assessing their practice around this important role.
Design: Cross-sectional questionnaire study.
Setting:The Home Nursing Scale to Help Spousal Caregivers (HNS-HSC) questionnaire for self-assessment of home-visit nursing to spouses was developed based on interviews with spouses and literature reviews.
Participants: Overall, 1500 home-visit nurses nationwide who had experience in supporting spousal caregivers and their patients in the predeath and postdeath periods were approached for participation.
ain outcome measure: Planned exploratory and confirmatory factor analyses were used to assess the underlying dimensions of the HNS-HSC; Cronbach’s a was used to determine the reliability. The Japanese version of Frommelt Attitude Toward Care of the Dying Scale Form B (FAT-COD-B-J) and Grief Care scale were administered to assess convergent and discriminant validity.
Results: Exploratory and confirmatory factor analyses identified 26 items on five factors: ‘helping spouses plan their futures’ ‘helping caregivers alleviate any regrets regarding their care’, ‘understanding the bond between a couple’, ‘providing support for anticipatory grief’, and ‘addressing spousal caregivers’ emotions after their spouses’ deaths’. The final model showed acceptable goodness-of-fit indices. The Cronbach’s a for the entire scale was 0.949 and exceeded 0.822 for each factor. The correlation coefficient with the FAT-COD-B-J, which served as an external validation, was 0.35. The correlation coefficients for the three grief care scales were 0.64, 0.45 and 0.72, respectively.
Conclusions: This scale is a reliable and valid tool for visiting nurses to self-assess their knowledge, skills and practice around helping spousal caregivers. By using this scale, it is expected to change nursing practice in pursuit of improving quality of life of spouses.
Most caregiving literature has focused on women, who have traditionally taken on caregiving roles. However, more research is needed to clarify the mixed evidence regarding the impact of gender on caregiver/patient psychological outcomes, especially in an advanced cancer context. In this paper, we examine gender differences in caregiver stress, burden, anxiety, depression, and coping styles, as well as how caregiver gender impacts patient outcomes in the context of advanced cancer. Eighty-eight patients with advanced cancer and their caregivers completed psychosocial surveys. All couples were heterosexual and most caregivers were women (71.6%). Female caregivers reported significantly higher levels of perceived stress, depression, anxiety, and social strain compared with male caregivers, and female patients of male caregivers were more likely to use social support as a coping style compared with male patients of female caregivers. These findings highlight the potential differences between male and female caregivers' needs and psychological health.