BACKGROUND: Happiness is a core ingredient of health and well-being, yet relatively little is known about what happiness means for individuals near the end of life, and whether perceptions of happiness change as individuals approach the end of their lives.
AIM: The aim of this study was to explore, through interviews, how individuals experiencing hospice care understood and conceptualized happiness.
DESIGN: Qualitative interviews with hospice patients were analyzed thematically.
SETTING/PARTICIPANTS: Adult patients (n = 20) in a New Zealand hospice who were receiving palliative care and who could give their informed consent were invited by hospice nurse coordinators to an interview.
RESULTS: Four themes emerged from analysis of the transcribed interviews. Participants defined happiness most frequently and in most depth in relation to connection with others. They identified being in the present moment, particularly in relation to nature, and that happiness had become less associated with money, status, or possessions. They had an attitude of determination to focus on what mattered now.
CONCLUSION: Patients receiving palliative care were generally happy with their lives, appreciated the simpler aspects of life away from the material. There was a common exhortation to young people to avoid focusing too much on acquisition and the internet and to prioritize instead social connection and engagement with the natural world.
With the daily number of confirmed COVID-19 cases and associated deaths rising exponentially, social fabrics on a global scale are being worn by panic, uncertainty, fear, and other consequences of the health care crisis. Comprising more than half of the global health care workforce and the highest proportion of direct patient care time than any other health professional, nurses are at the forefront of this crisis. Throughout the evolving COVID-19 pandemic, palliative nurses will increasingly exercise their expertise in symptom management, ethics, communication, and end-of-life care, among other crucial skills. The literature addressing the palliative care response to COVID-19 has surged, and yet, there is a critical gap regarding the unique contributions of palliative nurses and their essential role in mitigating the sequelae of this crisis. Thus, the primary aim herein is to provide recommendations for palliative nurses and other health care stakeholders to ensure their optimal value is realized and to promote their well-being and resilience during COVID-19 and, by extension, in anticipation of future public health crises.
Objective: We examined whether older adults' health and well-being during their final year of life predicts end-of-life (EOL) quality of life (QOL) and quality of care (QOC).
Methods: Using data from deceased participants (n = 1125) in the 2011-2015 National Health and Aging Trends Study, we performed latent class analysis to identify profiles of health and well-being, and we examined the association between these classes and EOL QOL and QOC.
Results: Four classes were identified: healthy/happy (20%), frail/happy (37%), cognitively impaired/moderately distressed (27%), and highly impaired/highly distressed (16%). Persons in the highly impaired/highly distressed class showed a poorer QOL at the EOL, whereas those in the healthy/happy class reported a lower level of QOC at the EOL.
Discussion: The benefits of maintaining health and well-being often carry forward to EOL. Older adults with high impairment and distress merit greater attention such as assuring care and advance care plans.
Ce rapport avait pour objectif de guider l'action et le questionnement professionnels pour permettre le respect maximal des volontés liées à la fin de vie et un accompagnement le plus humain possible de la personne et des proches. Voici les résultats obtenus par le groupe de travail :
- Anticiper les situations de fin de vie en favorisant les échanges et en s’appuyant au maximum sur les ressources disponibles que ce soit au sein des équipes ou avec les partenaires du territoire.
- Informer et communiquer régulièrement sur les actions mises en œuvre, les adaptations qui s’imposent en période d’épidémie et les évolutions possibles des situations de fin de vie dont le décès.
- Garantir le confort de la personne et respecter les souhaits de chacun tout en prenant des décisions partagées lorsque des arbitrages s’imposent.
- Maintenir le lien avec les proches et l’entourage et leur apporter un soutien lors de la survenue du décès.
- Soutenir l’ensemble des professionnels dont la charge émotionnelle s’est accentuée.
- Préparer le deuil en offrant la possibilité aux personnes accompagnées et aux professionnels de partager un geste un moment, en mémoire de la personne.
Context: Clinicians often worry that patients' recognition of the terminal nature of their illness may impair psychological well-being.
Objectives: To determine if such recognition was associated with decrements to psychological well-being that persisted over time.
Methods: About 87 patients with advanced cancer, with an oncologist-expected life expectancy of less than six months, were assessed before and after an oncology visit to discuss cancer restaging scan results and again at follow-up (median time between assessments, approximately six weeks). Prognostic understanding (PU) was assessed at previsit and postvisit, and a change score was computed. Psychological well-being was assessed at pre, post, and follow-up, and two change scores were computed (post minus pre; follow-up minus post).
Results: Changes toward more accurate PU was associated with a corresponding initial decline in psychological well-being (r = -0.33; P < 0.01) but thereafter was associated with subsequent improvements (r = 0.40; P < 0.001). This pattern remained controlling for potential confounds. Patients showed different patterns of psychological well-being change (F = 3.07, P = 0.05; F = 6.54, P < 0.01): among patients with improved PU accuracy, well-being initially decreased but subsequently recovered; by contrast, among patients with stable PU accuracy, well-being remained relatively unchanged, and among patients with decrements in PU accuracy, well-being initially improved but subsequently declined.
Conclusion: Improved PU may be associated with initial decrements in psychological well-being, followed by patients rebounding to baseline levels. Concerns about lasting psychological harm may not need to be a deterrent to having prognostic discussions with patients.
BACKGROUND: Spirituality is particularly important for patients suffering from life-threatening illness. Despite research showing the benefits of spiritual assessment and care for terminally ill patients, their spiritual needs are rarely addressed in clinical practice. This study examined the factor structure and reliability of the Functional Assessment of Chronic Illness Therapy-Spiritual (FACIT-Sp) in patients with advanced cancer. It also examined the clinical meaning and reference intervals of FACIT-Sp scores in cancer patients subgroups through a literature review.
METHODS: A forward-backward translation procedure was adopted to develop the Italian version of the FACIT-Sp, which was administered to 150 terminally ill cancer patients. Exploratory factor analysis was used for construct validity, while Cronbach's a was used to assess the reliability of the scale.
RESULTS: This study replicates previous findings indicating that the FACIT-Sp distinguish well between features of meaning, peace, and faith. In addition, the internal consistency of the FACIT-Sp was acceptable. The literature review also showed that terminal cancer patients have the lowest scores on the Faith and Meaning subscales, whereas cancer survivors have the highest scores on Faith.
CONCLUSIONS: The Italian version of the FACIT-Sp has good construct validity and acceptable reliability. Therefore, it can be used as a tool to assess spiritual well-being in Italian terminally ill cancer patients. This study provides reference intervals of FACIT-Sp scores in newly diagnosed cancer patients, cancer survivors, and terminally ill cancer patients and further highlights the clinical meaning of such detailed assessment.
PURPOSE: This study attempted to examine the influence of resilience, life satisfaction, and psychological well-being on attitude to death.
METHODS: A predictive correlational design was used. The participants were 184 nursing students from three universities of Korea. They responded to a self-report questionnaire, with items on demographics, resilience, life satisfaction, psychological well-being, and attitude to death.
RESULTS: The mean score for attitude to death was 2.77±0.39 (range, 1-4), and a significant difference was observed depending on age, grade, and death-related education. Attitude to death was positively correlated with death-related education, resilience, life satisfaction, and psychological well-being. Results of the hierarchical multiple regression analysis indicated that death-related education and psychological well-being were significant predictors of attitude to death, explaining 26.6% of the latter. The most important factor was psychological well-being.
CONCLUSION: Although death-related education and psychological well-being are two of the most influential factors among nursing students, no more than 30.4% of this study's participants received death-related education. Death-related education is necessary to help nursing students so that they can cope positively with stressful situations by finding positive meaning. It is necessary to develop a systematic curriculum so that these students can establish a positive attitude to death.
Depuis les années 2000, en Suisse, le suicide assisté (SA) est en constante augmentation. Cela implique que les soignants, notamment dans les unités de soins palliatifs, sont amenés à prendre en soins des personnes ayant fait une demande de SA. Cette revue de la littérature a pour objectif d'identifier les facteurs pouvant influencer la demande de SA et d'apporter des pistes de réflexion sur la pratique infirmière dans l'accompagnement de ces personnes jusqu'à leur retour à domicile ou à leur éventuel décès. Une consultation des bases de données CINHAL, PubMed et Web of Science a été effectuée entre décembre 2017 et février 2018. Les mots clés utilisés sont : chronic disease, nursing care, assisted suicide/death, death with dignity. Les résultats montrent que les facteurs influençant la demande de SA seraient principalement inhérents et intrinsèquement liés à la personnalité du patient. Les soignants sont peu informés sur les dispositions institutionnelles et légales concernant l'assistance au suicide et sont prêts à s'impliquer à des dégrés divers dans ce processus en fonction de leurs croyances mais aussi de leur niveau de connaissance. L'identification des facteurs influençant la demande de SA met en évidence le besoin d'autonomie et de contrôle des personnes faisant la demande. Par le manque de cadre institutionnel et légal, les soignants sont souvent démunis face à ces situations. Des pistes de réflexion sont proposées concernant le rôle infirmier pour promouvoir le bien-être des personnes au travers du concept d'auto-transcendance de Pamela Reed. Ces résultats sont à considérer avec précaution en vue de la littérature restreinte à ce sujet et du nombre d'articles considérés.
Gardening has well-established physical, social and emotional benefits for older adults in varied circumstances. In Detroit, Michigan (United States of America), as in many cities, policy makers, funders, researchers, community organisations and residents regard gardening as a means of transforming bodies, persons, communities, cities and broader polities. We draw on ethnographic research conducted during one gardening season with 27 older African Americans in Detroit to foreground the social dimensions of wellbeing in later life and thus develop a more robust and nuanced understanding of gardening's benefits for older adults. Based on anthropological understandings of personhood and kinship, this article expands concepts of wellbeing to include social relations across multiple scales (individual, interpersonal, community, state) and temporalities (of the activity itself, experiences of ageing, city life). Even when performed alone, gardening fosters connections with the past, as gardeners are reminded of deceased loved ones through practices and the plants themselves, and with the future, through engagement with youth and community. Elucidating intimate connections and everyday activities of older African American long-term city residents counters anti-black discourses of ‘revitalisation’. An expansive concept of wellbeing has implications for understanding the generative potential of meaningful social relations in later life and the vitality contributed by older adults living in contexts of structural inequality.
This study aimed to investigate "Faith" and "Meaning/Peace" dimensions of the functional assessment of chronic illness therapy-spiritual well-being scale (FACIT-Sp-12) in relation to coping strategies, anxiety and depression, and to analyze the relationship between FACIT-Sp-12 and the daily spiritual experience scale in end-of-life cancer patients. A sample of 152 participants were involved. The daily spiritual experiences correlated the most with "Faith" subscale. Moreover, religious coping, depression and daily spiritual experiences resulted "Faith" significant predictors, while depression, anxiety, self-distraction, positive reframing and behavioral disengagement were "Meaning/Peace" subscale's significant predictors. These findings highlighted the considerable impact of the daily spiritual experiences on patients' spiritual well-being.
OBJECTIVES: Well-being typically exhibits pronounced deteriorations with approaching death, with sizeable interindividual variations in levels and changes. It is less well understood how psychosocial factors contribute to these individual differences. We examined whether and how social integration is associated with terminal trajectories of well-being, indexed as life satisfaction.
METHOD: Data were drawn from 1,119 deceased Japanese participants of a 15-year longitudinal study (age at death: M = 79.2 years; SD = 7.7 years; 43.1% women). Life satisfaction, structural and functional features of social integration (e.g., frequency of contact with family and nonfamily, and perceived overall support, respectively), socio-demographic characteristics, and physical function were assessed.
RESULTS: Social integration predicted individual differences in terminal decline in life satisfaction, after controlling for age at death, gender, education, and physical function: More diverse social relationships were associated with higher levels of life satisfaction at 1 year before death. Additionally, individuals who exhibited more decline in social participation and perceived less support showed more pronounced decline with increasing proximity of death.
DISCUSSION: This study suggests that social integration plays a protective role in late-life well-being, and that sustaining an active social life and supportive social interactions may help mitigate terminal decline in well-being.
This paper reports the impact of a major life event-death-on the physical, psychological and social well-being of the deceased's close friends. We utilised data from a large longitudinal survey covering a period of 14 years (2002-2015) consisting a cohort of 26,515 individuals in Australia, of whom 9,586 had experienced the death of at least one close friend. This longitudinal cohort dataset comprises responses to the SF-36 (health related quality of life measure) and allowed for analysis of the short and longer-term impacts of bereavement. In order to manage the heterogeneity of the socio-demographics of respondents who did/not experience a death event, we use a new and robust approach known as the Entropy Balancing method to construct a set of weights applied to the bereaved group and the control group (the group that did not experience death). This approach enables us to match the two groups so that the distribution of socio-demographic variables between the two groups are balanced. These variables included gender, age, marital status, ethnicity, personality traits, religion, relative socio-economic disadvantage, economic resources, and education and occupation and where they resided. The data show, for the first time, a range of negative and enduring consequences experienced by people following the death of a close friend. Significant adverse physical and psychological well-being, poorer mental health and social functioning occur up to four years following bereavement. Bereaved females experienced a sharper fall in vitality, suffered greater deterioration in mental health, impaired emotional and social functioning than the male counterparts up to four years after the death. The data show that the level of social connectedness plays an important role in bereavement outcomes. Specifically, we found that less socially active respondents experienced a longer deterioration in physical and psychological health. Finally, we found evidence that the death of a close friend lowered the respondent's satisfaction with their health. Since death of friends is a universal phenomenon, we conclude the paper by reflecting on the need to recognise the death of a close friend as a substantial experience, and to offer support and services to address this disenfranchised grief. Recognising bereaved friends as a group experiencing adverse outcomes can be used internationally to prompt health and psychological services to assist this specific group, noting that there may be substantial longevity to the negative sequelae of the death of a friend. Facilitating bereaved people's support networks may be a fruitful approach to minimising these negative outcomes.
PURPOSE: The diagnosis of a terminal disease bears existential challenges, which activate the attachment system. Attachment insecurity, as well as existential resources, such as spiritual well-being, influences patients' extent of psychological distress. Knowledge about the interrelation of these constructs is limited. Based on current research, we assume spiritual well-being to mediate the association of attachment insecurity and psychological distress.
METHODS: We obtained data from the baseline measurement of a randomized controlled trial in advanced cancer patients. Patients were sampled from the University Medical Centers of Hamburg and Leipzig, Germany. Main outcome measures included the Patient Health Questionnaire (PHQ-9), the Death and Dying Distress Scale (DADDS), the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp), and the Experience in Close Relationships Scale (ECR-M16) for assessing attachment insecurity. We tested the mediation hypothesis with two regression analyses using bootstrapping procedure.
RESULTS: A total of 190 patients were included. Spiritual well-being mediated the association of attachment insecurity and depression (R2 = 11%), as well as death anxiety (R2 = 15%), in fearful-avoidant attached patients. Neither dismissingly nor preoccupied attached patients differ in terms of spiritual well-being and psychological distress in comparison with secure attached patients.
CONCLUSION: Spiritual well-being plays a relevant role in advanced cancer patient's mental health through mediating the association of attachment and psychological distress. Developing a better understanding of the interdependency of the constructs of spiritual well-being and attachment can help to develop individually tailored advanced cancer care programs and psychotherapeutic interventions.
Context: Spirituality is the essence of a human being. Patients who have good spiritual well-being (SWB) will also have better quality of life. However, health-care providers usually under-assess this aspect due to lack of practical guideline. In Thailand, the validated survey came from a different cultural background and was heavily based on Buddhism approach.
Aims: The aim of the study is to assess the meaning of spirituality and SWB in Thai breast cancer patients in Southern Thailand where people have more diverse cultural and religious background.
Settings and Design: Descriptive qualitative phenomenology design.
Subjects and Methods: In-depth interview with stratified purposive sampling method. The interviews took place in the oncology outpatient unit department and participants' home. Inclusion criteria were being diagnosed with breast cancer, age over 18 years old, able to communicate in Thai, has a Palliative Performance Scale more than 50, and was not diagnosed with any psychological disorder.
Statistical Analysis Used: Descriptive statistic.
Results: From October 2016 to February 2018, 16 women joined the study. Three themes emerged with five subthemes: (1) feeling life worthwhile, (2) sense of belonging in the community, and (3) feeling connected to the nature.
Conclusions: For Thai women, who have breast cancer, their spirituality focuses on family, mainly their children. They also have better SWB if they have good family relationship, social support, or feeling connected with nature or higher being in a religious or nonreligious way. Future survey design needs to be broader in a secular view and on another perspective rather than the religious approach.
BACKGROUND: The use of complementary therapy has become increasingly integrated into specialist palliative care units (SPCUs).
OBJECTIVE: To evaluate patients' interest in and experience of complementary therapies during their inpatient stay in a SPCU.
METHOD: All 179 patients admitted to the SPCU over a 3-month period were assessed on admission. Those deemed suitable to participate by the researcher/clinical nurse specialist were invited to participate in this research. A standardised paper questionnaire was completed by the participating patients.
RESULTS: 71 patients (40%) completed the study. Those excluded had cognitive impairment, fatigue, communication difficulties or were imminently dying. Some declined to participate. A variety of age groups and diagnoses were represented. Only 27% of participants had a previous experience of using complementary therapies in the past 12 months. The majority (52%) were 'very interested' in receiving complementary therapy, while 13% reported having 'no interest'. Massage and reflexology were identified as the most popular forms of complementary therapy. The primary anticipated benefits associated with complementary therapy were relaxation and improvement in general wellbeing.
CONCLUSION: This research has indicated a high level of interest in complementary therapies in the study population, across a wide age range regardless of diagnosis or level of disease.
Au Québec, le rôle des maisons de SP est central dans l'offre de soins en fin de vie. Avec l'évolution et le vieillissement de la société, des lois et du travail, qui se complexifient, les soignants et l'ensemble des intervenants se voient exposés à une demande émotionnelle croissante combinée à d'autres facteurs de stress. Pourtant, aucun programme visant à favoriser le bien-être au travail pour ce type d'intervenants ne semble disponible au Canada. S'inspirant d'écrits et d'expériences internationales, un processus novateur permettant l'élaboration et la mise en oeuvre d'un programme de bien-être pour intervenants en maison de soins palliatifs (SP) a été entrepris suivant l'influence de la recherche-action. L'article décrit cette démarche de coconstruction. Ce type d'innovation pourrait permettre l'amorce d'une transformation systémique reconnaissant l'importance de soutenir les acteurs den SP pour offrir des soins de fin de vie de qualité.
La Dre Caroline Kilsdonk, médecin vétérinaire, a terminé un certificat en gérontologie et microprogramme de 2e cycle en médecine des animaux de compagnie en 2013, puis une maîtrise en bioéthique en 2016. Elle siège à plusieurs comités d'éthique. Dans sa pratique, elle s'intéresse surtout au comportement canin. Elle souhaite poursuivre sa mission dans quelques CHSLD, où elle pratique la zoothérapie depuis cinq ans avec ses caniches royaux même si elle est présidente de l'Ordre des médecins vétérinaires du Québec depuis juin 2017.
OBJECTIVES: Spousal loss is a significant life event that can negatively affect multiple facets of mental and physical health. Social support and engagement are generally found to improve adjustment following adversity, but much less is known regarding which facet of social support and engagement is most predictive of adjustment following spousal loss. This study examined changes in mental health and well-being following spousal loss and which facets of social support and engagement are associated with positive adjustment following spousal loss.
METHOD: Latent growth curve modeling was applied to longitudinal data from 265 individuals who became widowed from the Changing Lives of Older Couples Study to examine: (1) adjustment following spousal loss in depressive symptoms, anxiety and well-being and (2) whether different facets of social support and engagement predict positive adjustment.
RESULTS: Depressive symptoms increased following spousal loss, whereas anxiety and well-being remained relatively stable before and after spousal loss. Receiving more instrumental support was associated with lower levels of depressive symptoms and anxiety 6-months following spousal loss. Higher levels of emotional support from one's spouse at baseline was associated with more depressive symptoms and anxiety 6-months following spousal loss.
CONCLUSION: Instrumental support received was the most beneficial facet of social support and engagement. The discussion focuses on how these findings fit into the larger literature of the ways through which social support and engagement lead to adjustment following adversity.
Background: A life review is a promising intervention to enhance spiritual well-being in older people. Conventional life review interventions are lengthy and often led by psychologists.
Objectives: This is the first randomised controlled trial study to examine the effectiveness and applicability of a nurse-led short term life-review intervention in people with life limiting diseases, the purpose being to enhance their spiritual well-being and lower their anxiety and depression.
Design: A sequential mixed method approach, randomised controlled trial and qualitative evaluation, was adopted. The intervention group received the short version life review, and the control group attention placebo. Participants were randomly assigned to either intervention or control groups by computerised randomisation. Both participants and outcome assessors were blinded to the group assignment.
Settings: The study was conducted in three publicly funded regional hospitals in Hong Kong.
Participants: The target population were people suffering from life-limiting diseases, and receiving hospitalised, day hospice or outreach home care from the palliative care team.
Methods: Two sets of questionnaires were used: the spiritual sub-scale of the McGill Quality of Life Questionnaire, Hong Kong version and the Hospital Anxiety and Depression Scale, Chinese version. The intervention process was assessed by means of observation log sheets and semi-structured interviews of 12 participants.
Results: A total of 109 participants were recruited (54 in the intervention group, 55 in the control group). The intervention group showed significantly more improvement in spiritual well-being than the control group, with a Cohen’s d-effect size of 0.65. Although there were improvements in both anxiety and depression levels in the intervention group, statistical significance in between-group comparisons was not reached. The process evaluation found that most participants were highly involved (92.6%), interested (77.8 %) and participated in the intervention (79.6%). The participants described the intervention process as ‘comfortable’, ‘relaxing’ and ‘interesting’, and felt enlightened, with raised self-awareness, after it.
Conclusion: The nurse-led short term life-review intervention demonstrated significant improvement effects in spiritual well-being. Participant feedback on nurses’ performance was positive, finding the intervention acceptable and useful. The setting of the intervention has now been extended from bedside to home. It is recommended to incorporate life review into palliative nursing specialty training, empowering more nurses to deliver the intervention in their daily practice.
The purpose of this cross-sectional, descriptive study was to assess differences in neuropathic symptoms, physical and emotional well-being, and quality of life in cancer patients at the end of life compared to those without neuropathic symptoms. Neuropathic symptoms were defined as numbness and tingling in the hands and/or feet. A secondary analysis of data from two hospices in Central Florida was performed. Adults (n = 717) with a cancer diagnosis, an identified family caregiver, and who were receiving hospice services, were eligible. The prevalence of numbness/tingling in the hands or feet was 40% in this sample of hospice patients with cancer. Participants with neuropathic symptoms of numbness/tingling had a significantly higher prevalence of pain (76.7% vs. 67.0%; p = .006), difficulty with urination (29.4% vs. 20.3%; p = .007), shortness of breath (64.9% vs. 54.1%; p = .005), dizziness/lightheadedness (46.0% vs. 28.2%; p < .001), sweats (35.5% vs. 20.3%; p < .001), worrying (50.7% vs. 37.3%; p = .001), feeling irritable (38.5% vs. 28.7%; p = .008), feeling sad (48.2% vs. 37.8%; p = .008), and difficulty concentrating (46.2% vs. 32.5%; p < .001). They also reported significantly higher overall symptom intensity and symptom distress scores (p = < .001), higher pain severity (p = .001) and pain distress (p = .002), and decreased quality of life (p = .002) compared to those without numbness/tingling. Neuropathic symptoms are emotionally distressing at the end of life and associated with higher symptom burden and diminished quality of life.