Introduction: Bereavement support is an integral element of palliative care. Emerging evidence stipulates that bereavement support should be reserved for those most at risk of poor outcomes. While this evidence makes identifying those at risk of experiencing a complex bereavement a necessary first step, it has been difficult to arrive at a consensus as to whom that should be.
Aim: To explore whether palliative care in-patients with advanced disease are concerned about the bereavement needs of others and, if so, is it their next-of-kin.
Design: A qualitative study using semi-structured interviews, and thematic analysis using a constant comparative method.
Setting/participants: Patients identified by their physicians as being aware of their limited prognosis (n = 19) in a specialist palliative care service in Sydney, Australia.
Findings: Three key themes emerged: 1) Families considered close and supportive may not require bereavement follow-up; 2) Families with previous significant losses or who have more complex lives are perceived by patients as having greater risk; and 3) Asking palliative care patients about whom they are most concerned in their network after their death is difficult but possible.
Conclusions: There are potentially people in the palliative patients’ networks who may be in need of bereavement support, but who are unlikely to be informed about available bereavement services. New strategies are needed to identify people who may benefit from bereavement support.
Background: The high incidence of pain associated with end-stage cancers indicates the need for a new approach to understanding how and why patients, caregivers, and clinicians make pain management choices.
Aims: To provide pilot data and preliminary categories for developing a middle-range nursing theory and framework through which to scrutinize and identify problematic processes involved in management of poorly controlled pain for home hospice patients, caregivers, and nurses, the “caring triad.”
Design: A qualitative pilot study using constructivist grounded theory methodology to answer the question, “In the context of hospice, what are the social processes occurring for and between each member of the hospice caring triad and how can these processes be categorized?”
Settings: Home hospice care.
Participants/Subjects: hospice patients experiencing cancer pain, family caregivers, hospice nurses.
Methods: From a sample of triads including hospice patients, caregivers and nurses, data were collected at observational visits, individual interviews, and a focus group over the course of each triad's study involvement. We used recursive coding processes to interpret data.
Results: Three preliminary categories of social processes were identified: Pain Meaning, Working Toward Comfort, and Bridging Pain; and six subcategories: perceiving pain and discomfort, knowing what to do, planning activities, negotiating a pain plan, talking about pain, and being together in pain.
Conclusions: As illustrated in the caring triad cases presented, this study moved the management approach of pain from a dichotomous realm of nurse-patient, to the more naturalistic realm for home hospice of nurse-patient-caregiver. In analyzing social processes within and across triad members, we identified categories of impact to target assessment, intervention, and education to improve pain outcomes.
Background: In 2018, >75,000 children were newly affected by the diagnosis of advanced cancer in a parent. Unfortunately, few programs exist to help parents and their children manage the impact of advanced disease together as a family. The Enhancing Connections-Palliative Care (EC-PC) parenting program was developed in response to this gap.
Objective: (1) Assess the feasibility of the EC-PC parenting program (recruitment, enrollment, and retention); (2) test the short-term impact of the program on changes in parent and child outcomes; and (3) explore the relationship between parents' physical and psychological symptoms with program outcomes.
Design: quasi-experimental two-group design employing both within- and between-subjects analyses to examine change over time and change relative to historical controls. Parents participated in five telephone-delivered and fully manualized behavioral intervention sessions at two-week intervals, delivered by trained nurses. Behavioral assessments were obtained at baseline and at three months on parents' depressed mood, anxiety, parenting skills, parenting self-efficacy, and symptom distress as well as children's behavioral-emotional adjustment (internalizing, externalizing, and anxiety/depression).
Subjects: Parents diagnosed with advanced or metastatic cancer and receiving noncurative treatment were eligible for the trial provided they had one or more children aged 5-17 living at home, were able to read, write, and speak English, and were not enrolled in a hospice program.
Results: Of those enrolled, 62% completed all intervention sessions and post-intervention assessments. Within-group analyses showed significant improvements in parents' self-efficacy in helping their children manage pressures from the parent's cancer; parents' skills to elicit children's cancer-related concerns; and parents' skills to help their children cope with the cancer. Between-group analyses revealed comparable improvements with historical controls on parents' anxiety, depressed mood, self-efficacy, parenting skills, and children's behavioral-emotional adjustment.
Conclusion: The EC-PC parenting program shows promise in significantly improving parents' skills and confidence in supporting their child about the cancer. Further testing of the program is warranted.
BACKGROUND: A structured family meeting (FM) is recommended within 72 h of admission for trauma patients with high risk of mortality or disability. Multidisciplinary FMs (MDFMs) may further facilitate decision-making. We hypothesized that FM within three hospital days (HDs) or MDFM would be associated with increased use of comfort measures.
MATERIALS AND METHODS: We reviewed all adult trauma deaths at an academic level 1 trauma center from December 2014 to December 2017. Death in the first 24 h or on nonsurgical services were excluded. Demographics, injury characteristics, FM characteristics, and outcomes such as length of stay (LOS) were recorded. Early FM was defined as occurring within three HDs; MDFM required attendance by two or more specialty teams.
RESULTS: A total of 177 patients were included. Median LOS was 6 d (interquartile range 4-12). FMs were documented in 166 patients (94%), with 57% occurring early. MDFM occurred in 49 (28%), but usually occurred later (median HD 5 and interquartile range 2-8). Early FM was associated with reduced LOS (5 versus 11 d, P < 0.001), ventilator days (4 versus 9 d, P < 0.001), and deaths during a code (1.2% versus 13.2%, P < 0.001). MDFM was associated with higher use of comfort measures (88% versus 68%, P < 0.05). Of patients who transitioned to comfort care status (n = 130, 73.4%), code status change occurred earlier if an early FM occurred (5 versus 13 d, P < 0.001).
CONCLUSIONS: MDFM is associated with increased comfort care measures, whereas early FM is associated with reduced LOS, ventilator days, death during a code, and earlier comfort care transition.
Au cours du siècle dernier, les réactions et processus de deuil ont de plus en plus été perçus et conceptualisés comme « a-normaux », c’est-à-dire pathologiques lorsqu’ils sont inhabituels, trop longs ou trop courts, trop intenses ou pas assez présents. Le deuil est souffrance (dolere étymologiquement) et notre société veut le bonheur, le contrôle et l’efficacité. Le deuil doit donc être « traité ». Pourtant, le deuil existe car il est le coût de l’attachement essentiel entre les êtres humains, attachement qui a été phylogénétiquement et ontologiquement sélectionné pour notre survie et notre développement. La perspective humaniste, centrée sur la personne et expérientielle, permet d’envisager les réactions et processus de deuil de manière plus compréhensive, humaine, idiosyncratique. Dans cet article, au-delà d’un bref retour sur les développements théoriques et empiriques dans ce domaine, je présenterai les éléments scientifiques permettant d’appuyer une perspective d’accompagnement centrée sur la personne que tout un chacun peut vivre de manière privée et/ou professionnelle. Basée sur les preuves scientifiques, celle-ci apparaît comme plus respectueuse des diversités intra- et interindividuelles, considérant la personne de manière holistique et intervenant par la relation de qualité à l’autre. L’aidant authentique, respectueux, empathique, flexible et chaleureux est amené à entreprendre un travail humanisant l’autre et le soin qu’il lui apporte tout en répondant aux critères sociétaux d’efficacité attendue.
Dans cet article, l’auteur présente les bases théoriques et techniques du dispositif de médiation transculturelle mis à la disposition des équipes de soins palliatifs. Accompagner une famille dans cette épreuve est un défi pour toutes les équipes soignantes. Ce défi peut se révéler plus complexe encore lorsque soignants et parents ne partagent pas les mêmes références culturelles. Dans des situations d’impasse thérapeutique, la prise en compte du fait culturel – considéré non plus comme un frein, mais au contraire comme un catalyseur formidablement actif – peut non seulement enrichir l’interprétation médicale, mais aussi rendre possible une réelle rencontre entre le patient et son médecin.
BACKGROUND: Post-intensive care syndrome-family is a common problem in relatives of patients who die in an intensive care unit. Family-centred end-of-life care with support for the family during and after the death is supposed to prevent suffering and avoid illness.
AIMS AND OBJECTIVES: This study aimed to investigate family-centred end-of-life care and bereavement follow-up services offered to family members of patients who die in Swedish intensive care units.
DESIGN, METHODS: A cross-sectional study using a 16-question survey based on family-centred end-of-life care was sent to all 81 adult intensive care units. Data were analysed by descriptive statistics and chi-square. Respondents were able to add individual comments to the questionnaire.
RESULTS: Although the majority (76.7%) offered some kind of follow up, this service was not always offered. Modes for invitation, timing, and contents in the follow up varied between the units. The staff tried to individualize the follow-up service according to the family's needs. Nurses and social workers were the only professionals who provided follow-up conversations on their own. Most of the intensive care units (97.3%) kept diaries that were handed over to the family when they left the unit after the patient's death or at a follow-up visit. Only 8.8% reported that they always offer the family the opportunity to be present during resuscitation. Most respondents reported that patients (60.6%) died in a private room.
CONCLUSIONS: Family-centred end-of-life care varied among the intensive care units, and some families were not offered any follow up at all. Timing, invitation, and elements in the follow up differ between the units. Diaries were commonly kept and usually given to the family. Few units offered the family to be present during resuscitation.
RELEVANCE TO CLINICAL PRACTICE: There is a need for national guidelines to ensure that all bereaved families receive equal and individual family-centred end-of-life care.
End-of-life decision making frequently involves a complex balancing of clinical, cultural, social, ethical, religious and economic considerations. Achieving a happy balance of these sometimes-competing interests, however, can be particularly fraught in a family-centric society like Singapore where the family unit often retains significant involvement in care determinations necessitating careful consideration of the family's position during the decision-making process. While various decision-making tools such as relational autonomy, best interests principle and welfare-based models have been proposed to help navigate such difficult decision-making processes, their application in practical terms, however, is dubious at best. This case report is presented to highlight these issues and explore the utility of these frameworks within the Singapore end-of-life care context when the interests of the family may be dissonant from those of the patient.
Families of dying children are profoundly impacted by numerous interactions with health-care providers before, during, and after their child’s death. However, there is a dearth of research on these families’ direct, qualitative experiences with health-care providers. This study presents findings from interviews with 18 family members, predominantly parents, regarding their experiences with health-care providers during a child’s terminal illness, from diagnosis to death. The importance of compassion emerged as a salient theme, manifested in myriad ways, and connected to participants’ perception of caregiver presence in multiple domains. Families were likewise negatively affected by a wide variety of situations and behaviors that represented individual or institutional abandonment or nonpresence, and thus compounded the experience of loss. Specifics and implications for practice are explored.
The United States military began to experience a steady increase in suicide rates across all service branches at the inception of the wars in Afghanistan (2001) and Iraq (2003). As the number of suicide deaths increased, so did the number of affected survivors who seek postvention support. Unique issues that accompany suicide death may expose survivors to a more distressing and complicated grief process. Peer support has clinically been observed to be widely utilized by suicide loss survivors. This article explores unique issues accompanying military suicide loss, potential benefits of postvention peer-based support, clinical considerations, and future directions.
Pathfinders is a 10-session program developed in a community setting to creatively address the diverse needs of bereaved children and families, prevent complications of grief and trauma, and promote healthy adaptation. It is an accessible, grief-focused and trauma-informed family systems model that is theory-driven, research-informed, and grounded in practice-based evidence. Pathfinders incorporates principles central to narrative approaches, with a focus on restorative processes for helping children and families stay on track developmentally. This article outlines the structure, process, and content of Pathfinders, including examples of creative interventions used within the program.
The purpose of this qualitative study was to explore the characteristics of posttraumatic growth arising from losing an immediate family member to suicide in Korea. We used interpretative phenomenological analysis for data collection and analysis and conducted in-depth interviews with 11 participants in Korea to evaluate the positive changes subsequent to the suicide. Participants revealed positive outcomes in response to losing an immediate family member to suicide after suffering the “most unimaginable pain” including (a) “Now I know what the most important thing in life is,” (b) “Warm and intimate relationships matter,” and (c) “Survivors of suicide’s search for meaning.” The implications of these findings and avenues for future research are discussed.
Les services de réanimation sont pourvoyeurs de nombreuses sources de détresse morale et émotionnelle. La mort y est omniprésente, et son accompagnement, bien encadré par les lois, permet au patient de partir avec dignité, et entouré de ses proches. L'accompagnement des familles est un élément de satisfaction et de diminution de l'incidence des complications psychologiques. Pour les soignants il reste encore du travail, notamment dans la prévention du burn-out.
Lorsqu’on accompagne une personne arrivant en fin de vie, qui souffre d’un Alzheimer, ou se retrouve en soins palliatifs, comment anticiper le deuil tout en respectant la personne ? Comment accompagner le mourant en lui apportant le soutien qu’il attend ? Comment accompagner un proche en fin de vie ? Comment traverser un deuil ? Comment accepter la séparation ?
Autant de questions auxquelles cet ouvrage tente de répondre.
La vie de Fabienne bascule une nuit de novembre 2015 lorsque son fils Giani se fait poignarder. Laissé pour mort, le jeune homme s’en sort miraculeusement, mais avec de terribles séquelles : handicapé à 95 %, il souffre également d’un « locked in syndrom ». Enfermé dans son propre corps, Giani est désormais incapable de marcher, de manger et même de respirer seul. Il ne communique plus qu’en bougeant les paupières et en soulevant un doigt. En permanence, sa mère est à son chevet, témoin impuissant de sa souffrance mais prête à se battre pour que justice soit faite. Dans ce témoignage, Fabienne raconte la lutte quotidienne de son fils. Un calvaire qui durera trois longues années. Jusqu’au moment où Giani exprime sa volonté d’en finir et de mourir dignement. Un droit élémentaire dont cette mère-courage a fait aujourd’hui son combat.
The purpose of this review was to evaluate end-of-life care (EOLC) in the intensive care unit (ICU) from the perspective of family members. Sandelowski's segregated approach from Joanna Briggs Institute (JBI) Mixed-Methods Systematic Reviews guided this review. A search was conducted in PubMed, CINAHL, PsycINFO, EMBASE, and ProQuest databases and identified 50 papers (33 quantitative, 15 qualitative, and 2 mixed-methodology studies). Five synthesized themes (distressing emotions, shared decision-making, proactive communication, personalized end-of- life care, and valuing of nursing care) were identified. For quantitative results, study methodologies and interventions were heterogeneous and did not always improve family members' perceived quality of care and family members' psychological distress. Configuration of qualitative and quantitative data revealed ICU end-of-life interventions were ineffective because they were not guided by family members' reported needs and perceptions. To fulfill the family members' needs for the patients' EOLC in the ICU, researchers should develop a theory to explicitly explain how the family members experience ICU EOLC and implement a theory-based intervention to improve family psychological outcomes.
Palliative care may be an opportunity to discuss cancer family history and familial cancer risks with patients' relatives. It may also represent the last opportunity to collect, from dying patients, clinical data and biospecimens that will inform cancer risk assessment and prevention in their surviving relatives. This study aims to explore the perspectives of cancer patients' relatives about cancer heritability, addressing cancer family history, and performing genetic testing in palliative care settings. Thirteen first-degree relatives of cancer patients who died in palliative care participated in the study. Two focus groups were conducted and transcribed verbatim. Two independent coders conducted a thematic content analysis. The themes included: (1) Knowledge of cancer heritability; (2) Experiences and expectations regarding cancer family history discussions, and (3) Views on genetic testing in palliative care patients and DNA biobanking. Participants seemed aware that cancer family history is a potential risk factor for developing the disease. They considered the palliative care period an inappropriate moment to discuss cancer heritability. They also did not consider palliative care providers as appropriate resources to consult for such matters as they are not specialized in this field. Participants welcomed DNA biobanking and genetic testing conducted at the palliative care patients' request. Cancer occurrence within families raises concerns among relatives about cancer heritability, but the palliative care period is not considered the most appropriate moment to address this issue. However, discussions about the risk to cancer patients' relatives might need to be considered on a case-by-case basis.
OBJECTIVES: For patients' entire families, it can be challenging to live with cancer during the palliative stage. However, a sense of coherence buffers stress and could help health professionals identify families that require support. Therefore, the short version of the Family Sense of Coherence Scale (FSOC-S) was translated, culturally adapted, and validated in a Swedish sample.
METHODS: Translation and cross-cultural adaptation of the FSOC-S into Swedish was conducted in accordance with the World Health Organization's Process for Translation and Adaptation of Research Instruments guidelines. Participants were recruited from two oncology clinics and two palliative centers in Sweden.
RESULTS: Content validity was supported by experts (n = 7), persons with cancer (n = 179), and family members (n = 165). Homogeneity among items was satisfactory for persons with cancer and family members (item-total correlations were 0.45 0.70 and 0.55 0.72, respectively) as well as internal consistency (ordinal alpha = 0.91 and 0.91, respectively). Factor analyses supported unidimensionality. FSOC-S correlated (rs > 0.3) with hope, anxiety, and symptoms of depression, which supported convergent validity. The test-retest reliability for items ranged between fair and good (kw = 0.37 0.61).
SIGNIFICANCE OF RESULTS: The FSOC-S has satisfactory measurement properties to assess family sense of coherence in persons with cancer and their family members. FSOC-S could be used to identify family members who experience low levels of perceived family sense of coherence which provides health care professionals with insight into families' needs and ability to live with cancer in the palliative stage.
OBJECTIVES: The experience of caregiving may affect carers' well-being into bereavement. We explored associations between mental well-being and previous experience of bereavement of, and caring for, someone close at the end-of-life.
METHODS: An end-of-life set of questions was included in population-based household survey administered to adults (age 16 years and above). We used univariable regression to explore the cross-sectional relationship between our primary outcome (Warwick-Edinburgh Mental Well-being Scale (WEMWBS)) and possible explanatory variables: sociodemographic; death and bereavement including ability to continue with their life; disease and carer characteristics; service use and caregiving experience.
RESULTS: The analysis dataset included 7606 of whom 5849 (77%) were not bereaved, 1174 (15%) were bereaved but provided no care and 583 (8%) were bereaved carers. WEMWBS was lower in the oldest age class (85 years and above) in both bereaved groups compared with not bereaved (p<0.001). The worst WEMWBS scores were seen in the 'bereaved but no care' group who had bad/very bad health self-assessed general health (39.8 (10.1)) vs 41.6 (9.5)) in those not bereaved and 46.4 (10.7) in bereaved carers. Among the bereaved groups, those who would not be willing to care again had lower WEMWBS scores than those who would (48.3 (8.3) vs 51.4 (8.4), p=0.024).
CONCLUSION: Mental well-being in bereavement was worse in people with self-reported poor/very poor general health and those with a worse caregiving experience. Although causality cannot be assumed, interventions to help people with worse mental and physical health to care, so that their experience is as positive as possible, should be explored prospectively.