Memory making in end-of-life care in the adult intensive care unit: A scoping review of the research literature

ObjectiveThe objective of this review is to describe the practice of memory making as part of end-of-life care within an adult intensive care setting and determine reported outcomes.MethodsA scoping review of the literature was performed. Data were collected from sources such as ProQuest, CINAHL, Medline, Embase, PsycINFO, and PubMed using combinations of the keywords: including adult, critical care, intensive care, ICU, death, dying, grief, bereavement, end?of?life, memento*, memor*, keepsak*, and transitional object. Peer-reviewed studies reporting on the use of memory making within an adult intensive care setting and its outcomes for family members were included.ResultsFour activities facilitating memory making as part of end-of-life care for adults are reported in the literature, all in the intensive care setting. Use of a computer-generated word cloud image received by families in the intensive care was reported as a meaningful keepsake and sometimes displayed in places such as the patient's funeral memorial. Offering a printed copy of the patient's electrocardiogram as a memento was considered by some to be extremely or very helpful during their bereavement experience and was reported by nursing staff to be well received by family members. The use of patient diaries during bereavement has been reported with the potential to promote better understanding of the events leading to the death, and photography was also included in some patient diaries as a visual memento.ConclusionAlthough limited evidence is available concerning memory making in the adult intensive care environment, from studies to date, surviving family members of deceased patients in the intensive care unit mostly report valuing memory-making opportunities when offered. However, further research is required to evaluate both healthcare staff's competence and confidence in offering memory making and determine if such offerings promote the family's adjustment to the loss of their loved one after a death in the intensive care area.     

Intensive care unit diaries to help bereaved family members in their grieving process: a systematic review

BackgroundIntensive care unit diaries are often used to support patients during their psychological recovery. The intensive care unit stay can be upsetting, disturbing and traumatic for both patients and their families especially when the patient does not survive.AimTo investigate the connection between intensive care unit diaries and the grieving process experienced by family members of adult patients deceased in the intensive care unit.MethodsSystematic literature review according to PRISMA guidelines: PubMed, CINAHL and Cochrane Library were consulted. The Caldwell’s framework was used for the quality appraisal.ResultsOnly six studies examine this topic. The potential benefits of intensive care unit diaries in family members’ bereavement process may be an aid to realise how extremely ill their loved one was, may provide comfort and may help relatives to cope with their loss.ConclusionThe use of intensive care unit diaries to help family members’ bereavement process may be a useful tool but further research is necessary to better understand their role and benefits.     

Family Centered Practice During Pediatric Death in an Out of Hospital Setting

Objective: To understand effective ways for EMS providers to interact with distressed family members during a field intervention involving a recent or impending out-of-hospital (OOH) pediatric death. Methods: Eight focus groups with 98 EMS providers were conducted in urban and rural settings between November 2013 and March 2014. Sixty-eight providers also completed a short questionnaire about a specific event including demographics. Seventy-eight percent of providers were males, 13% were either African American or Hispanic, and the average number of years in EMS was 16 years. They were asked how team members managed the family during the response to a dying child, what was most helpful for families whose child suddenly and unexpectedly was dead in the OOH setting, and what follow up efforts with the family were effective. Results: The professional response by the EMS team was critical to family coping and getting necessary support. There were several critical competencies identified to help the family cope including: (1) that EMS provide excellent and expeditious care with seamless coordination, (2) allowing family to witness the resuscitation including the attempts to save the child's life, and (3) providing ongoing communication. Whether the child is removed from the scene or not, keeping the family appraised of what is happening and why is critical. Exclusion of families from the process in cases of suspected child abuse is not warranted. Giving tangible forms of support by calling friends, family, and clergy, along with allowing the family time with the child after death, giving emotional support, and follow-up gestures all help families cope. Conclusion: The study revealed effective ways for EMS providers to interact with distressed family members during an OOH pediatric death     

Supporting families of patients with dementia at end-of-life in hospital

IntroductionThere are barriers to implementing person-and family-centred end-of-life care for people with dementia in hospitals. Nursing care for people with dementia is enhanced through family involvement. However, families report unmet needs during admissions contributing to distress and dissatisfaction. Furthermore, little is known about families’ needs during end-of-life care for people with dementia in hospital.AimThis study examined perceptions of interpersonal care during end-of-life for patients with dementia.MethodsThis research used a qualitative approach framed through a social constructionist and complex systems theoretical frameworks. Hospital clinicians (n = 20) and bereaved family members (n = 12) of deceased patients with dementia participated in semi-structured interviews focussing on recent end-of-life care experiences.FindingsAn overarching theme of maintaining connections highlights the need to support patient and family bonds at end-of-life. Although clinicians often presumed families had experienced the social loss of a relative due to dementia, most families described continued bonds. Despite clinicians’ insights into caregiver grief, several families reported unmet bereavement support needs. Clinicians and families sought to personalise end-of-life through affirming signs of patients’ presence, working collaboratively to achieve comfort, personalising basic care interventions and offering gestures of hospitality.ConclusionEnd-of-life care for people with dementia and their families is improved when clinicians personalise patient care interventions using creative and simple strategies. Families feel comforted through humanistic care that acknowledges their unique relationship with the patient. However, it is vital to integrate grief and loss psychoeducation during end-of-life care to address families unmet bereavement needs following patient death.     

Post-traumatic stress symptoms in family caregivers of intensive care unit patients: A longitudinal study

ObjectivesTo describe the prevalence and trajectory of family caregivers’ post-traumatic stress symptoms during the first year after a patient’s admission to the intensive care unit and identify associations between family caregivers’ background characteristics, hope and post-traumatic stress symptoms.Research methodology/designsFamily caregivers of intensive care unit patients (n = 211) completed questionnaires at patient admission to the intensive care unit and thereafter at 1, 3, 6, and 12 months. Mixed-model analyses were performed.SettingFour intensive care units in a university hospital in Norway.Main outcome measuresImpact of Event Scale—Revised and Herth Hope Index.ResultsOn admission, 54% of family caregivers reported high post-traumatic stress symptom levels, which decreased during the first six months after patient discharge. Lower levels of hope, being younger, having more comorbidities and being on sick leave were associated with higher post-traumatic stress symptom levels. Being the parent of the patient was associated with decreased post-traumatic stress symptom levels.ConclusionsFamily caregivers of intensive care unit patients report high levels of post-traumatic stress symptoms. Higher levels of hope were associated with fewer post-traumatic stress symptoms.     

Balancing hope and despair at the end of life: The contribution of organ and tissue donation

PurposeConcern for the grieving family can moderate the intentions of critical care staff to advocate deceased organ and tissue donation. Conversely, benevolent actions may provoke distress through missed opportunities to save or transform lives. This article provides insight into the perceived benefits of organ and tissue donation for grieving families who experienced end-of-life care in the intensive care unit.MethodsData were collected via semistructured, face-to-face or telephone interviews with 43 participants from 31 donor families. Audio recordings were transcribed verbatim and subjected to qualitative content analysis.ResultsThe study findings affirmed the importance of person-centered end-of-life care. Donor families shared examples of good-quality care and communication that contained the hallmarks of compassion, respect, dignity, and choice. We uncovered a trajectory of hope and despair in which the option of organ and tissue donation appeared to give meaning to the life and death of the deceased person and was comforting to some families in their bereavement.ConclusionsOur study findings underlined the significance of donation decision making for grieving families. Organ and tissue donation has the potential to balance hope and despair at the end of life when the wishes of the dying, deceased, and bereaved are fulfilled.     

Family and health professional experience with a nurse-led family support intervention in ICU: A qualitative evaluation study

ObjectivesTo investigate family and health professional experience with a nurse-led family support intervention in intensive care.DesignQualitative evaluation study.SettingA twelve-bed surgical intensive care unit in a 900-bed University Hospital in Switzerland.Main outcome measuresData were collected through 16 semi-structured interviews with families (n = 19 family members) and three focus group interviews with critical care staff (n = 19) and analysed using content analysis strategies.FindingsFour themes related to the new family support intervention were identified. First, families and staff described it as a valuable and essential part of ICU care. Second, it facilitated staff-family interaction and communication. Third, from staff perspective, it promoted the quality of family care. Fourth, staff believed that the family support intervention enabled them to better care for families through increased capacity for developing and sustaining relationships with families.ConclusionsAn advanced practice family nursing role coupled with a family support pathway is an acceptable, appreciated and beneficial model of care delivery in the inttensive care unit from the perspective of families and critical care staff. Further research is needed to investigate the intervention’s effectiveness in the intensive care unit.     

Effect of Patient and Family Centred Care interventions for adult intensive care unit patients and their families: A systematic review and meta-analysis

ObjectivesTo assess the evidence for the feasibility and effect of patient and familycentred care interventions provided in the intensive care unit, single or multicomponent, versus usual care, for reducing delirium, anxiety, depression and post-traumatic stress disorder in patients and family-members.DesignA systematic review and meta-analysis following the PRISMA guidelines and GRADE approach. A systematic literature search of relevant databases, screening and inclusion of studies, data extraction and assessment of risk of bias according to Cochrane methodology. The study is preregistered on PROSPERO (CRD42020160768).SettingAdult intensive care units.ResultsNine randomised controlled trials enrolling a total of 1170 patients and 1226 family-members were included. We found moderate to low certainty evidence indicating no effect of patient and family centred care on delirium, anxiety, depression, post-traumatic stress disorder, in-hospital mortality, intensive care length of stay or family-members’ anxiety, depression and post-traumatic stress disorder. No studies looked at the effect of patient and family centred care on pain or cognitive function in patients. Evaluation of feasibility outcomes was scarce. The certainty of the evidence was low to moderate, mainly due to substantial risk of bias in individual studies and imprecision due to few events and small sample size.ConclusionIt remains uncertain whether patient and family centred care compared to usual care may reduce delirium in patients and psychological sequelae of intensive care admission in patients and families due to limited evidence of moderate to low certainty. Lack of systematic process evaluation of intervention feasibility as recommended by the Medical Research Council to identify barriers and facilitators of patient and family centred care in the adult intensive care unit context, further limits the conclusions that can be drawn.     

The decision-making process of transferring patients home to die from an intensive care unit in mainland China: A qualitative study of family members’ experiences

ObjectivesTo map the decision-making process of family members involved in transferring a critically ill patient home to die from an intensive care unit in mainland China and to explore the experiences of those family members.DesignA constructivist qualitative study.SettingOne hospitals intensive care unit in Southeast China.MethodsThirteen adult family members (of ten patients) who participated in decision-making related to transferring a relative home to die from the intensive care unit were purposively selected. Data were collected via interviews and analysed applying thematic analysis.FindingsA two-stage decision-making process was identified. Family decision-making was mediated by factors including: accepting the impending death and hope that the patient would not die; time pressures in which decisions had to be made, and the challenges of meeting cultural expectations of a home death. Transfer home was a family-centred decision constrained by a gender-based hierarchy restricting the involvement of different family members.ConclusionThe stages and key factors in the decision-making process of family members when involved in transferring a patient home to die from an intensive care unit in China are rooted and informed by cultural expectations and limits in the current healthcare system regarding end-of-life care options. Understanding the climate in which family members must make decisions will facilitate supportive interventions to be implemented by healthcare professionals. Further empirical research is needed to explore family members’ needs when the patient has been transferred and dies at home in mainland China.Implications for Clinical PracticeHealthcare professionals need to understand the challenges family members face when deciding to transfer a relative home to die from an intensive care unit. For example time pressures can limit the choices of family members so that to provide them with timely, ongoing, realistic updates for a greater involvement of family members in generating end of life care plans could be beneficial.¹     

Clinician statements and family satisfaction with family conferences in the intensive care unit

OBJECTIVES: The quality of family-clinician communication in the intensive care unit is often inadequate, but little is known about specific clinician communication behaviors that might improve family satisfaction. In this exploratory analysis, we hypothesized that clinicians' communication behaviors providing emotional support to families during intensive care unit conferences would be associated with increased family satisfaction. DESIGN: We audiotaped 51 intensive care unit family conferences in which withholding or withdrawing life support was discussed or bad news was delivered. Emotional support techniques used by clinicians during each conference were identified and coded using grounded theory. SETTING: Four Seattle hospitals. SUBJECTS: Family members of critically ill patients. INTERVENTIONS: Questionnaires rating satisfaction with communication were completed by 169 family members. MEASUREMENTS AND MAIN RESULTS: Linear regression with generalized estimating equation methods was used to analyze the association between the frequency of clinicians' emotionally supportive statements and family satisfaction. Increasing frequency of three types of clinicians' statements during family conferences was associated with increased family satisfaction: a) assurances that the patient will not be abandoned before death (p=.015); b) assurances that the patient will be comfortable and will not suffer (p=.029); and c) support for family's decisions about end- of-life care, including support for family's decision to withdraw or not to withdraw life-support (p=.005). CONCLUSIONS: Most family members participating in this study were quite satisfied with the communication in the family conferences. Specific clinician communication behaviors are associated with increased family satisfaction during family conferences among family members who are willing to have a family conference recorded. Our results suggest that clinicians in the intensive care unit may improve the experiences of families of critically ill patients by providing explicit support for decisions made by a family with regard to end-of-life care and by assuring families continuity of high-quality care with particular attention to the patient's comfort.     

FACILITATING ATTACHMENT BETWEEN SCHOOL-AGED CHILDREN AND A DYING PARENT

A qualitative, community study of 58 parentally bereaved children and their 35 surviving parents illustrates how families take advantage of forewarning of death to foster connections between children and dying parents and prepare for youngsters’ continued attachment to dying parents after the death. Children and parents displayed strong yearnings to remain connected during terminal illness, but fostering connections for attachment after the death was less intuitive and more emotionally fraught as it undermined coping strategies based on denial of impending death. Thus, although some may benefit from interventions aimed at anticipatory relationship facilitation, clinicians should respect limitations on what family members are psychologically able to bear.     

Facilitating attachment between school-aged children and a dying parent

A qualitative, community study of 58 parentally bereaved children and their 35 surviving parents illustrates how families take advantage of forewarning of death to foster connections between children and dying parents and prepare for youngsters' continued attachment to dying parents after the death. Children and parents displayed strong yearnings to remain connected during terminal illness, but fostering connections for attachment after the death was less intuitive and more emotionally fraught as it undermined coping strategies based on denial of impending death. Thus, although some may benefit from interventions aimed at anticipatory relationship facilitation, clinicians should respect limitations on what family members are psychologically able to bear.     

Healthcare professionals’ values about and experience with facilitating end-of-life care in the adult intensive care unit

ObjectivesTo evaluate values and experience with facilitating end-of-life care among intensive care professionals (registered nurses, medical practitioners and social workers) to determine perceived education and support needs.Research designUsing a cross-sectional study design, 96 professionals completed a survey on knowledge, preparedness, patient and family preferences, organisational culture, resources, palliative values, emotional support, and care planning in providing end-of-life care.SettingGeneral adult intensive care unit at a tertiary referral hospital.ResultsCompared to registered nurses, medical practitioners reported lower emotional and instrumental support after a death, including colleagues asking if OK (p = 0.02), lower availability of counselling services (p = 0.01), perceived insufficient time to spend with families (p = 0.01), less in-service education for end-of-life topics (p = 0.002) and symptom management (p = 0.02). Registered nurses reported lower scores related to knowing what to say to the family in end-of-life care scenarios (p = 0.01).ConclusionFindings inform strategies for practice development to prepare and support healthcare professionals to provide end-of-life care in the intensive care setting. Professionals reporting similar palliative care values and inclusion of patient and family preferences in care planning is an important foundation for planning interprofessional education and support with opportunities for professionals to share experiences and strengths.     

The experiences of Chinese family members of terminally ill patients - a qualitative study

Aim. To describe and understand the experiences of Chinese family members of terminally ill patients during the end of life process in a palliative care unit. Background. Palliative care aims to provide care to dying patients and their family members. Skillful interventions are necessary to help family members cope with the impending death of the patient and maintain their emotional equilibrium. Hence, it is important to understand the experiences of family members of palliative care. Design. A phenomenological study was conducted. Data were collected by semi‐structured interviews. We interviewed a purposive sample of 20 family members of terminally ill patients in a palliative care unit in Hong Kong. The data were analysed following Colaizzi's phenomenological methodology. Results. Family members experienced anticipatory grief, with reactions that included anger, unease, sadness and helplessness. This was particularly acute when the patient was first admitted to the palliative care unit. However, the family members quickly accepted the reality and committed themselves to the care of the patient, seeking informational and emotional support from the nurses. The families wanted to be assured that the patient had been offered good care and suffered no pain. It was considered important to be with the patient during the dying process. Conclusion. This study demonstrated that Chinese family members were committed to the care of the patients in the palliative care unit. Cultural beliefs played a part in influencing family emotions and concerns. Relevance to clinical practice. This study offers a direction for family interventions that acknowledge the reactions of family members to the admission of a patient to a palliative care unit. It highlights that families need active informational and emotional support from nurses.     

Nursing students’ experiences with patient death and palliative and end-of-life care: A systematic review and meta-synthesis

AimTo synthesise the experiences of nursing students encountering patient death and caring for patients under palliative care or at end-of-life and their families in clinical settingsBackgroundNurses are pivotal in caring for dying patients and families. It has been reported that nursing students feel unprepared in caring for dying patients and handling patient death. Understanding their experiences would better inform how palliative care education can be improved and how students can be better supported in clinical settings.DesignA qualitative systematic review and meta-synthesisMethodsPubMed, Embase, CINAHL, PsycINFO, ProQuest and Google Scholar were searched for peer-reviewed articles and theses/dissertations published between 1 January 2012–25 Feb 2023. Qualitative studies of any design reporting nursing students’ experiences of patient death, caring for patients under palliative care, at end-of-life, or with time-limiting diseases in clinical settings in English were included. Study quality was evaluated using the Critical Appraisal Skills Programme tool. Data were synthesised using Sandelowski and Barroso’s 2-step framework through a meta-summary using thematic analysis, which were then integrated into meta-syntheses using an event timeline.ResultsThe review included 71 studies from 26 countries (n = 1586 nursing students). The meta-summary contained 8 themes and 23 subthemes: (1) Communication experience with patients and families, (2) Satisfaction with care provided to patients and families, (3) Impact of the COVID-19 pandemic on death and dying, (4) Perceptions of death and dying, (5) Impact of death, (6) Nursing education on palliative end-of-life care, (7) Support systems and coping methods, (8) Learning outcomes. The meta-synthesis depicted nursing students' experiences before, during and after encountering dying patients, families and patient death. Suggestions for nursing faculty and clinical staff on how they could equip students with necessary skills and knowledge and support them in clinical settings were also provided.ConclusionsWhile caring for dying patients and families was beneficial to nursing students' learning and professional development, they encountered many challenges. Governments, clinical and academic nursing leaders must prioritise the integration of palliative care content into the curricula across nursing schools in face of increasing palliative and end-of-life care needs in patients. Nursing schools should ensure that students are adequately prepared by designing culturally and socioeconomically relevant curricula, integrating theoretical and experiential learning and offering students a thorough understanding of palliative and end-of-life care. Clinical staff and nursing instructors should support students emotionally and guide them in patient care.     

Application of the READY framework supports effective communication between health care providers and family members in intensive care

Effective communication between intensive care health care providers and family is crucial to support surrogate or shared decision-making and to individualise care. Despite its importance in health care standards and policy, the quality of communication with families in intensive care is regarded as suboptimal. Furthermore, an intensive care admission is an extremely stressful event for families, which may impact their understanding and subsequent decision-making. Communicating with family members is a routine practice in intensive care; however, health care providers often receive no formal communication training. To date, family-focused communication interventions in intensive care have targeted end-of-life care and are not generalisable across all types of family–health care provider communication interactions. Mugweni et al. recently reported the results of a multiprofessional training intervention involving 26 health care professionals to improve the delivery of different news to families during pregnancy and at birth. A critique of this article has been undertaken to inform routine communication with critically ill family members and optimise the delivery of care in intensive care units.