Older adults' attitudes toward using Euthanasia at the end-of life: cancer vs. Parkinson's disease.

Background: There is a paucity of studies that compare older adults' attitudes toward Euthanasia in two different terminal illnesses. Moreover, these studies did not relate to potentially influencing psycho-social factors. The current study aimed to examine the impact of a diverse range of variables on attitudes among older adults toward Euthanasia in two medical conditions: cancer and Parkinson's disease. Methods: A total of 501 individuals aged 75 and above participated in the study. Attitudes toward Euthanasia were measured using vignettes which described two conditions: an 80-year-old man with metastatic cancer and another man in an advanced stage of Parkinson's disease. The questionnaire included measures of relevant experience (with a close family member or a friend dying from a terminal illness), self-efficacy, will to live, satisfaction with life, will to prolong life, fear of death and dying, social support, and psycho-social characteristics. The data were analyzed using hierarchical linear regression models. Results: A more positive attitude toward Euthanasia was found in the case of cancer compared to Parkinson's disease. Being a woman, having more years of education, lower level of religiosity, greater fear of death and dying and higher self-efficacy contributes to more favorable attitudes toward Euthanasia in both end-of life conditions. Conclusions: The finding that attitudes toward Euthanasia are statistically significantly more positive in the case of cancer compared to Parkinson's disease can be attributed to the greater prevalence of cancer in the population, and to the public's awareness of the suffering associated with each of these medical conditions. Beyond the important role of the socio-demographic characteristics of gender, education, and religiosity, it appears that fear of death and dying and self-efficacy are important psychological factors in explaining attitudes toward Euthanasia in both illnesses among older people. These findings shed light on older adults' attitudes toward Euthanasia in debilitating illnesses.

The meaning of culture in nursing at the end of life - an interview study with nurses in specialized palliative care.

BACKGROUND: The countries of the world are becoming increasingly multicultural and diverse, both as a result of growing migration, of people fleeing countries at war but also due to increased mobility related to labour immigration. Culture is a broad concept where the definitions focus on learned and shared values, traditions, and beliefs of a group of individuals. People's culture affects health and perceptions of illness as well as treatment, symptoms, and care. Moreover, people who are at the end of life, live and exist within all levels and contexts of care. Specialized palliative care requires that the nurse has sufficient knowledge and skills to be responsible for meeting the patient's nursing needs also on a cultural level, regardless of cultural affiliation. The aim of the study was to highlight nurses' experiences of the meaning of culture when caring for patients at the end of life in specialized palliative care. METHODS: The study was conducted with a qualitative design and inductive approach. Semi-structured interviews were conducted with twelve nurses in western Sweden. Data were analysed using qualitative content analysis. RESULTS: The nurses had an awareness of culture as a phenomenon and how it affected palliative care at the end of life. The results showed two categories, Awareness of the impact of culture on nursing and Culture's impact and influence on the nurse's mindset and approach, consisting of seven subcategories that highlight the nurse's experience. It emerged that there are differences between cultures regarding notions of dying and death, who should be informed, and treatments. There were also challenges and emotions that arose when cultural preferences differed among everyone involved. A person-centred approach allowed for recognition of the dying person's culture, to meet diverse cultural needs and wishes. CONCLUSION: Providing culturally competent care is a major challenge. There are often no routines or methods prescribed for how nurses should relate to and handle the diversity of cultural notions that may differ from the values and cornerstones of palliative care. Having a person-centred approach as strategy can help to better manage the situation and provide equitable care on terms that respect cultural diversity.

Normality and compassionate care: experiences from advanced cancer patients in their last time at home.

BACKGROUND: Many cancer patients prefer to receive palliative treatment at home, as it allows them to be in a familiar and comfortable environment. Integrating Advance Care Planning (ACP) into routine practice in primary healthcare helps patients and their relatives prepare for end-of-life (EoL) care in accordance with patients' preferences. This includes the option to spend their final days at home if desired. The aim of this study was to gain insights from experiences of advanced seriously ill cancer patients at home while receiving palliative treatment and being engaged in ACP within primary healthcare settings. METHOD: This study employed a qualitative design, utilizing individual, semi-structured interviews that were analysed through reflexive thematic analysis, employing an abductive approach with a latent-level focus. The study included interviews with 12 participants with cancer who were receiving palliative care, had an estimated lifetime under 3 months, and had undergone an organized ACP approach in primary healthcare, documented with a palliative plan. RESULTS: Participants emphasized the importance of (1) Preserving normality at home, maintaining a sense of routine, comfort, and familiarity in the face of present and future challenges. The top obstacles for success identified by participants included (1a) The challenge of deterioration and the dual aspects of (1b) The value and burden of family caregivers. Cancer treatment placed a significant demand on patients due to side effects. Family caregivers played a crucial role for participants, providing support in daily life and serving as a key factor in the overall decision to which extend they are able to involve in support and care at home in the future. (2) Compassionate health care personnel (HCP) made a difference by fostering a culture of understanding participants' concerns, fears, and preferences, which was a key element that built and maintained trust for the participants. (3) Preparing for the future, especially EoL discussions initiated by healthcare personnel, was deemed important but, at times, uncomfortable for participants as it confronted them with reality. Guidance from ACP provided them with a sense of certainty and control. CONCLUSION: Preserving normality at home, along with the desire to stay at home for as long as possible, is a crucial goal for advanced cancer patients. Consistent professional communication and care in primary healthcare play a key role in building and maintaining trust, as well as fostering a sense of certainty and control for the participants.

Mixed-methods evaluation of a face-to-face educational intervention for health and social care professionals to deliver family-centred cancer supportive care when a parent with dependent children is at end of life.

OBJECTIVE: To deliver and evaluate an educational intervention to equip health and social care professionals (professionals) on how best to support parents at end of life with cancer concerning their dependent children (<18). METHODS: An evidence-based and theory-driven face-to-face educational intervention was developed and evaluated using three levels of Kirkpatrick's Model of Evaluation. Pre-test, post-test surveys were completed immediately before-and-after the intervention using a validated self-efficacy scale and single-item questions evaluating perceived usefulness and relevance (levels one/two). Qualitative interviews ≥ 3-months post-intervention explored if, and how the intervention impacted professionals' practice (level three). Fourteen sessions were delivered at oncology settings to 347 professionals between 2021 and 2023. Two hundred seventy four professionals completed the pre-test survey, with 239 completing the post-test survey. Fourteen professionals were interviewed between three-and 19-months post-intervention. RESULTS: Quantitative findings demonstrated a statistically significant improvement in self-efficacy post-educational intervention (p < 0.001). Qualitative data highlighted professionals gained new approaches to progress end of life conversations with parents, despite some familial resistance to sharing the reality of the situation with children. Positive intervention content shaping clinical practice included the bereaved parent's lived experience, communication framework and roleplay videos. Some professionals considered a booster session and opportunities to practice conversations necessary to further consolidate learning into practice. CONCLUSIONS: Evidence and theory-driven education can positively impact professionals' provision of family-centred cancer care. Future studies should explore the impact of this educational intervention on familial outcomes. Alongside a sustainable delivery of this intervention, advanced communication skills programmes should incorporate parent-child end of life conversations.

Factors Associated With Quality-of-Dying-and-Death Classes Among Critically Ill Patients.

Importance: Improving end-of-life care in the intensive care unit (ICU) is a priority, but clinically modifiable factors of quality of dying and death (QODD) are seldom identified. Objectives: To comprehensively identify factors associated with QODD classes of dying ICU patients, emphasizing clinically modifiable factors based on the integrative framework of factors associated with for bereavement outcomes. Design, Setting, and Participants: This observational cohort study was conducted at medical ICUs of 2 Taiwanese medical centers from January 2018 to March 2020 with follow-up through December 2022. Eligible participants included primary family surrogates responsible for decision making for critically ill ICU patients at high risk of death (Acute Physiology and Chronic Health Evaluation II score >20) but who survived more than 3 days after ICU admission. Data analysis was conducted from July to September 2023. Main Outcomes and Measures: QODD was measured by the 23-item ICU-QODD questionnaire. Factors associated with patient membership in 4 previously determined QODD classes (high, moderate, poor to uncertain, and worst) were examined using a 3-step approach for latent class modeling with the high QODD class as the reference category. Results: A total of 309 family surrogates (mean [SD] age, 49.83 [12.55] years; 184 women [59.5%] and 125 men [40.5%]) were included in the study. Of all surrogates, 91 (29.4%) were the patients' spouse and 66 (53.7%) were the patients' adult child. Patient demographics were not associated with QODD class. Two family demographics (age and gender), relationship with the patient (spousal or adult-child), and length of ICU stay were associated with QODD classes. Patients of surrogates perceiving greater social support were less likely to be in the poor to uncertain (adjusted odds ratio [aOR], 0.89; 95% CI, 0.83-0.94) and worst (aOR, 0.92; 95% CI, 0.87-0.96) QODD classes. Family meetings were associated with the poor to uncertain QODD class (aOR, 8.61; 95% CI, 2.49-29.74) and worst QODD class (aOR, 7.28; 95% CI, 1.37-38.71). Death with cardiopulmonary resuscitation was associated with the worst QODD class (aOR, 7.51; 95% CI, 1.12-50.25). Family presence at patient death was uniformly negatively associated with the moderate QODD class (aOR, 0.16; 95% CI, 0.05-0.54), poor to uncertain QODD class (aOR, 0.21; 95% CI, 0.05-0.82), and worst QODD class (aOR, 0.08; 95% CI, 0.02-0.38). Higher family satisfaction with ICU care was negatively associated with the poor to uncertain QODD class (aOR, 0.93; 95% CI, 0.87-0.98) and worst QODD class (aOR, 0.86; 95% CI, 0.81-0.92). Conclusions and Relevance: In this cohort study of critically ill patients and their family surrogates, modifiable end-of-life ICU-care characteristics played a more significant role in associations with patient QODD class than did immutable family demographics, preexisting family health conditions, patient demographics, and patient clinical characteristics, thereby illuminating actionable opportunities to improve end-of-life ICU care.

End-of-life care and grief: study conducted with family members of COVID-19 victims. / Cuidados no final de vida e luto: estudo com familiares de vítimas da COVID-19.

This article aims to investigate the implications of grief among family members of COVID-19 victims; verify the prevalence of prolonged grief symptoms; and identify family members' expectations regarding end-of-life care for their loved ones affected by COVID-19. Descriptive, cross-sectional research, with a quantitative-qualitative approach. Data collection was performed using an online questionnaire, guided by the PG-13 instrument. Descriptive and inferential statistics were applied. The results were presented descriptively and with the aid of tables. The study sample included 142 family members, mostly female, who presented emotional, physical, social, and financial implications as a result of grief. A prevalence of prolonged grief symptoms was observed in 11.4% of the mourners with more than six months and 29.6% of those with less than six months. Three thematic categories were identified: transparency in communicating the health situation, access to moments of farewell, and promotion of comfort in care actions. The symptoms of Prolonged Grief Disorder have a significant association with the degree of kinship. In final care, family members' expectations were classified as: permission for a dignified farewell, effective communication, and promotion of comfort and care.

O objetivo deste artigo é investigar implicações do luto em familiares de vítimas da COVID-19; verificar a prevalência de sintomas de luto prolongado; identificar expectativas dos familiares acerca do cuidado em fim de vida de seus entes acometidos por COVID-19. Pesquisa descritiva, transversal, com abordagem quanti-qualitativa. Coleta de dados mediante questionário on-line, norteado pelo instrumento PG-13. Aplicou-se estatística descritiva e inferencial. Os resultados foram apresentados de forma descritiva e com auxílio de tabelas. Amostra de 142 familiares, maioria do sexo feminino, que apresentaram implicações emocionais, físicas, sociais e financeiras em decorrência do luto. Houve prevalência de sintomas de luto prolongado em 11,4% dos enlutados com mais de seis meses e 29.6% dos que tinham menos de seis meses. Foram identificadas três categorias temáticas: transparência na comunicação da situação de saúde, acesso a momentos de despedida e promoção de conforto nas ações de cuidado. Os sintomas de Transtorno de Luto Prolongado possuem associação significativa com o grau de parentesco. Nos cuidados finais as expectativas dos familiares foram classificadas em: permissão para despedida digna, comunicação efetiva e promoção de conforto e cuidado.

Understanding barriers and facilitators to palliative and end-of-life care research: a mixed method study of generalist and specialist health, social care, and research professionals.

BACKGROUND: Palliative care provision should be driven by high quality research evidence. However, there are barriers to conducting research. Most research attention focuses on potential patient barriers; staff and organisational issues that affect research involvement are underexplored. The aim of this research is to understand professional and organisational facilitators and barriers to conducting palliative care research. METHODS: A mixed methods study, using an open cross-sectional online survey, followed by working groups using nominal group techniques. Participants were professionals interested in palliative care research, working as generalist/specialist palliative care providers, or palliative care research staff across areas of North West England. Recruitment was via local health organisations, personal networks, and social media in 2022. Data were examined using descriptive statistics and content analysis. RESULTS: Participants (survey n = 293, working groups n = 20) were mainly from clinical settings (71%) with 45% nurses and 45% working more than 10 years in palliative care. 75% were not active in research but 73% indicated a desire to increase research involvement. Key barriers included lack of organisational research culture and capacity (including prioritisation and available time); research knowledge (including skills/expertise and funding opportunities); research infrastructure (including collaborative opportunities across multiple organisations and governance challenges); and patient and public perceptions of research (including vulnerabilities and burdens). Key facilitators included dedicated research staff, and active research groups, collaborations, and networking opportunities. CONCLUSIONS: Professionals working in palliative care are keen to be research active, but lack time, skills, and support to build research capabilities and collaborations. A shift in organisational culture is needed to enhance palliative care research capacity and collaborative opportunities across clinical and research settings.

"It's like crystal gazing": The Lived Experience of Anticipating End-of-Life Choices in Older Adults and Their Close Ones.

BACKGROUND AND OBJECTIVES: Nowadays people increasingly try to take control over the end of their lives by anticipating end-of-life choices. Explication of these choices is encouraged using advance care planning (ACP). We aim to deepen our understanding of how choice-making processes are lived in real life, exploring the experience of community-dwelling older adults and their close ones over time. RESEARCH DESIGN AND METHODS: A multiperspective and longitudinal approach grounded in phenomenology was chosen. Ten triads consisting of an older adult (75+) and 2 close ones (n = 30) were interviewed, twice individually and once as a group, over 20 months (=70 interviews). Data were thematically analyzed both longitudinally and from all 3 perspectives. RESULTS: The essential meaning of anticipatory choice-making processes was described as a dynamic and relationally entangled decisional process, to navigate between paradoxical choices for an opaque future. Three fields of tension were created due to ambivalence in these choice-making processes: navigation between having and losing control, between taking away and burdening with responsibility, and between expressing and holding back oneself. DISCUSSION AND IMPLICATIONS: Anticipation of choices for hypothetical end-of-life scenarios turned out to be complex and ambivalent. Most older adults resisted ambivalence and ignored complexity in an attempt to stay in control over their end of life. The burdening impact of choices on close ones illuminated the relationality of choice-making processes. These aspects of end-of-life choice-making processes should be integrated into ACP in order to better understand and care for people and their close ones faced with these choices.

End-of-life care needs in cancer patients: a qualitative study of patient and family experiences.

BACKGROUND: Cancer is a disease that transcends what is purely medical, profoundly affecting the day-to-day life of both patients and family members. Previous research has shown that the consequences of cancer are greatly aggravated in patients at the end of life, at a time when they must also grapple with numerous unmet needs. The main objective of this study was to obtain more in-depth insight into these needs, primarily in patients with end-stage cancer nearing death. METHODS: Semi-structured interviews were conducted in Spain with cancer patients at the end of life (n = 3) and their family members (n = 12). The findings from the interviews were analyzed using qualitative thematic analysis and a grounded theory approach. RESULTS: Four major themes emerged from the interviews that explored the needs and concerns of patients with cancer at the end of life: (1) physical well-being (2) emotional well-being (3) social well-being and (4), needs relating to information and autonomous decision-making. The interviews also shed light on the specific needs of family members during this period, namely the difficulties of managing increased caregiver burden and maintaining a healthy work-life balance. CONCLUSIONS: A lack of support, information and transparency during a period of immense vulnerability makes the end-of-life experience even more difficult for patients with cancer. Our findings highlight the importance of developing a more in-depth understanding of the needs of this population, so that informed efforts can be made to improve palliative healthcare and implement more comprehensive care and support at the end of life.

Acceptability of Using a Decision Aid to Support Family Carers of People With Dementia Towards the End of Life: A Qualitative Study.

OBJECTIVES: To explore the experiences, acceptability and utility of a decision aid for family carers of people with dementia towards the end of life. METHODS: We conducted semi-structured interviews with a sample of family carers enroled into a 6-month feasibility study in England, sampling to gain a range of experiences and views, based on relationship to person they cared for (e.g., spouse, adult child), age, gender, and self-reported use of the decision aid during the feasibility study. Interviews were conducted in March 2021-July 2021 and analysed using reflexive thematic analysis. We used COREQ checklist to report our methods and results. RESULTS: Family carers found the decision aid acceptable, describing it as comprehensive, accessible with relevant information and its presentation enabled good engagement. Experiences of the decision aid covered four main themes which demonstrated the perceived acceptability and utility: 1. A source of support and reassurance; 2. Empowering conversations and confidence; 3. Including the person living with dementia; and 4. Breaking down complexity. CONCLUSIONS: An aid focussing on decisions about dementia end of life care supported family carers break down complex and emotive decisions, not only with making decisions in the moment but also in future planning. PATIENT OR PUBLIC CONTRIBUTION: Our three Patient and Public Involvement (PPI) members (all former family carers) were crucial throughout the wider study. PPI supported development of the topic guides, supported trialling the topic guide and interview procedures and finally supported the development of themes as part of the analysis.

What are we planning, exactly? The perspectives of people with intellectual disabilities, their carers and professionals on end-of-life care planning: A focus group study.

BACKGROUND: Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning. AIM: To explore the perspectives of people with intellectual disabilities, families, health and social care professionals and policy makers on end-of-life care planning within intellectual disability services. DESIGN: A total of 11 focus groups and 1 semi-structured interview were analysed using qualitative framework and matrix analysis. The analysis was conducted inclusively with co-researchers with intellectual disabilities. SETTING/PARTICIPANTS: A total of 60 participants (14 people with intellectual disabilities, 9 family carers, 21 intellectual disability professionals, 8 healthcare professionals and 8 policy makers) from the UK. RESULTS: There were differences in how end-of-life care planning was understood by stakeholder groups, covering four areas: funeral planning, illness planning, planning for living and talking about dying. This impacted when end-of-life care planning should happen and with whom. Participants agreed that end-of-life care planning was important, and most wanted to be involved, but in practice discussions were postponed. Barriers included issues with understanding, how or when to initiate the topic and a reluctance to talk about dying. CONCLUSIONS: To develop effective interventions and resources aiding end-of-life care planning with people with intellectual disabilities, clarity is needed around what is being planned for, with whom and when. Research and development are needed into supporting intellectual disability staff in end-of-life care planning conversations. Collaboration between intellectual disability staff and palliative care services may facilitate timely end-of-life care planning and thus optimal palliative end-of-life care.

The impact of clinical internship experience on nursing students' attitudes towards death and choices of end-of-life care: A self-control study.

AIM: This study aims to explore the impact of emergency department internships on the attitudes towards death among undergraduate nursing students and their preferences for end-of-life care settings. Additionally, the study analyzes the reasons behind nursing students' choices of end-of-life care settings and provides insights for improving undergraduate education on attitudes towards death and end-of-life care, and provide reference for the development of emergency hospice care. DESIGN: This study adopts an observational design with a self-controlled before-and-after approach. METHODS: A questionnaire survey was conducted with 96 nursing interns between July 2021 to June 2022. Demographic information and data on attitudes towards death, and preferences for end-oflife care location were collected by online questionnaire. Paired test were conducted to compare differences between groups. RESULTS: The study included a total of 96 nursing students with an average age of 21.11 years. The scores for the avoidance-acceptance dimension of death attitudes before and after the internship were 2.40 (1.80, 3.00) and 2.20 (1.60, 3.00), respectively, showing a significant difference (Z = -2.084, p = 0.037). Factors such as gender, experience in caring for critically ill or dying patients, knowledge of death education, and discussions about death at home were found to influence nursing students' attitudes towards death. Nursing students expressed a preference for receiving end-of-life care and treatment in their homes or in hospice/palliative care wards, while the intensive care unit, emergency department, and nursing homes were the least preferred settings. There were significant differences in nursing students' preferences for end-of-life care settings before and after the internship (p = 0.000). Importantly, the number of nursing students expressing a desire to receive end-of-life care in the emergency department increased from 2 to 7 after the internship, while the number of students not wanting end-of-life care in the emergency department decreased by 5.

Non-kin caregivers of terminally ill people: Contributions, experiences, and needs: A protocol for a mixed-methods study.

BACKGROUND: The role of non-kin caregivers, such as friends, neighbours, and acquaintances, in providing end-of-life care is significant but often overlooked in research and policy discussions. These caregivers provide extensive support for individuals in end-of-life care, in addition to or instead of family members. However, there is limited evidence in the literature regarding the experiences, burdens, and benefits of non-kin caregivers. AIMS: The aim of this research is to examine the role and contributions of non-kin caregivers in end-of-life care. The study intends to uncover their experiences, associated challenges, benefits, and requirements for support. METHODS: In order to achieve this objective, a mixed-methods approach will be employed, gathering data through structured questionnaires from approximately 150 non-kin caregivers and in-depth interviews with up to 25 participants. The questionnaires will measure the impact, burden, and benefits of caregiving. The Burden Scale for Family Caregivers, the Benefits of Being a Caregiver Scale, the Family Inventory of Needs, the Positive Mental Health Scale, a Graphic Closeness Scale, and selected items of the Eurofamcare Common Assessment Tool for socio-demographic and caregiving-related data will be used. Quantitative data will be analysed using IBM SPSS Statistics 28 for descriptive analysis and group comparison. The objective of the qualitative in-depth interviews is to obtain a comprehensive picture of the personal experiences, motivations and support needs of members of the non-kin caregivers cohort, who are as heterogeneous as possible in terms of gender, socio-economic status, and facility with the German language. The qualitative data from the interviews will be examined using MAXQDA software, adopting a grounded theory approach for analysis. DISCUSSION: This research will develop a comprehensive framework that captures the nuanced experiences of non-kin caregivers at the end of life. The framework will identify areas where support for non-kin caregivers is lacking and where further research is needed. TRIAL REGISTRATION: The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00033889; date of registration: 05 April 2024). The study is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.

Coping and end-of-life decision-making in ALS: A qualitative interview study.

How do people with amyotrophic lateral sclerosis (PALS) deal with their diagnosis and engage in end-of-life decision-making? What informational or supportive needs do they have for counselling about life-sustaining treatment and end-of-life care? Which correlating conditions and influences relate to these needs and how do they connect to the wish to die or wish to live? We conducted a qualitative interview study with 13 people with ALS in Germany from March 2019 to April 2021. Data collection and analysis followed a grounded theory-based approach and revealed close relationships between coping, informational needs and the preparedness for decision-making. We identified the coping strategies 'avoid thinking about end-of-life' and its counterpart, 'planning ahead to be well-prepared,' and differentiated the latter into the patterns 'withdrawing from life and taking precautions against life-prolongation' and 'searching for a new meaning in life and preparing for life-sustaining treatment'. The approaches are based on individual perceptions, attitudes and motives and can be positively/negatively reinforced by healthcare professionals (HCP), family and other interpersonal networks, but also by disease progression and in reaction to health care services. Type and degree of needs concerning information and counselling differed according to coping strategies. These strategies may vary over time, resulting in different support needs. Our findings signify that deep insight is needed into PALS' coping processes to understand their decision-making about life-sustaining treatment. Healthcare professionals should be sensitive to illness experiences beyond medical aspects and foster coping as a biographical process to better support people with ALS.

The matter of grief, loss and bereavement in families of those living and dying in residential aged care setting: A systematic review.

The grief, loss and bereavement needs of the families of those living and dying in residential aged care setting is not very well understood. This systematic review examines grief, loss, and bereavement experience of, and interventions relating to, family caregivers of those entering, living and dying in residential aged care. Out of 2023 papers that were identified, 35 met the inclusion criteria which included (n=28) qualitative and (n=7) quantitative intervention studies. The qualitative findings indicated quality of care provided to the resident at the end of their life, and after death care influenced family caregivers' grief reactions. The intervention studies revealed that educational interventions have the potential to lead to some benefits in the context of grief loss and bereavement outcomes. Recognizing the emotional experiences and support needs of families and carers may enhance the understanding of the ageing, caring, dying, grieving pathway for older people and their families.