Advance care planning (ACP) is linked with high-quality clinical outcomes at the end of life. However, ACP engagement is lower among African Americans than among Whites. In this study, we sought to identify correlates of ACP among African American women with multiple chronic conditions for two reasons: (1) African American women with multiple chronic conditions have high risks for serious illnesses, more intensive treatments, and circumstances that may require substitutes' decision-making and (2) identifying correlates of ACP among African American women can help us identify important characteristics to inform ACP outreach and interventions for this group.

A cross-sectional survey was conducted with 116 African American women aged ≥50 years who were recruited from the central area of a mid-western city.

On average, participants were 64 years old (SD = 9.42). The majority were not married (78%), had less than a college education (50%), and had an annual income of $15,000 (54%). Their mean numbers of chronic conditions and prescribed medications were 3.31 (SD = 1.25) and 8.75 (SD = 4.42), respectively. Fifty-nine per cent reported having talked with someone about their preferences (informal ACP); only 30% had completed a living will or a power of attorney for healthcare (formal ACP). Logistic regression showed that age, the number of hospitalizations or emergency department visits, and the number of prescription medications were significantly correlated with both informal and formal ACP; other demographic and psychosocial characteristics (the knowledge of ACP, self-efficacy, and trust in the medical system) were not.

Results of this study suggest a need for targeted, culturally sensitive outpatient ACP education to promote ACP engagement in older African American women, taking into account age, the severity of chronic conditions, and levels of medication management.

This study aims to explore clinicians’ practices and attitudes regarding advance care planning (ACP) in mainland China.

This study was a multicenter cross-sectional survey. Clinicians from tertiary hospitals in Beijing, Guangxi, and Inner Mongolia were invited to participate in the study. A questionnaire was formulated based on related literature to obtain information including demographic characteristics, and practices and attitudes toward ACP.

The total number of participants included 285 clinicians. The data response rate was 84.57%. Most of the clinicians had an inadequate understanding of ACP. Only a few clinicians had experience in participating or witnessing an ACP or related end-of-life discussions. Among 285 clinicians, 69.82% of clinicians were willing to introduce ACP to patients. Two hundred and thirty-eight (83.51%) clinicians wanted more education on ACP. Almost all clinicians believed that patients had the right to know about their diagnosis, prognosis, and available care options. Most clinicians (82.11%) regarded that ACP was partially feasible in mainland China. If clinicians had a serious illness, almost everyone was willing to find out their true health status and decide for themselves, and 81.40% wanted to institute an ACP for themselves. The biggest barriers to the use of ACP in mainland China were cultural factors. Statistical analysis revealed that some or good understanding level (P = 0.0052) and practical experience (P = 0.0127) of ACP were associated with the positive willingness.

ACP is still in its infancy in mainland China. Clinicians had inadequate understanding and minimal exposure to ACP. Most clinicians recognized the value and significance of ACP and had a positive attitude toward ACP. Clinicians need to be provided with education and training to promote their ACP practices. Culturally appropriate ACP processes and documents need to be developed based on Chinese culture and Chinese needs.

There are few studies evaluating the role of spirituality and the role of spiritually integrated interventions in people with amyotrophic lateral sclerosis (PALS) and their caregivers.

A scoping review was conducted to examine the nature and breadth of peer-reviewed literature on the role of spirituality, interventions integrating spirituality, and outcomes for PALS and their caregivers.

A literature review was performed, following the methods from the Joanna Briggs Institute Reviewers, based on all articles published between January 2006 and April 2022, identified in the CINAHL Complete, MEDLINE Complete, MedicLatina, Psychology and Behavioral Sciences Collection, and SPORTDiscus with full-text databases using key terms. Extracted data included research aims, study design, population and characteristics, theme description, and measures or type of intervention.

A total of 18 articles were included in this study: 14 qualitative, 3 quantitative, and 1 protocol of a quantitative study. Eight studies were based in Europe. The search identified different main themes related to spirituality for caregivers and patients, 2 spiritual measure scales, and one intervention. However, many studies were limited in sample size, generalizability, and transferability and used less sophisticated research designs.

This scoping review illustrates the importance given to spirituality by caregivers and PALS and reveals a very heterogeneous response. Thus, experimental studies in the area of spirituality are needed to systematically explore the impact of spiritual interventions, and the results of these studies could advance practice and policy by enhancing the quality of life for PALS and their caregivers.

Neuroticism is a significant predictor of adverse psychological outcomes in patients with cancer. Less is known about how this relationship manifests in those with noncancer illness at the end-of-life (EOL). The objective of this study was to examine the impact of neuroticism as a moderator of physical symptoms and development of depression in patients with amyotrophic lateral sclerosis (ALS), chronic obstructive pulmonary disease (COPD), end-stage renal disease (ESRD), and frailty in the last 6 months of life.

We met this objective using secondary data collected in the Dignity and Distress across End-of-Life Populations study. The data included N = 404 patients with ALS (N = 101), COPD (N = 100), ESRD (N = 101), and frailty (N = 102) in the estimated last 6 months of life, with a range of illness-related symptoms, assessed longitudinally at 2 time points. We examined neuroticism as a moderator of illness-related symptoms at Time 1 (∼6 months before death) and depression at Time 2 (∼3 months before death) using ordinary least squares regression.

Results revealed that neuroticism significantly moderated the relationship between the following symptoms and depression measured 3 months later: drowsiness, fatigue, shortness of breath, wellbeing (ALS); drowsiness, trouble sleeping, will to live, activity (COPD); constipation (ESRD); and weakness and will to live (frailty).

These findings suggest that neuroticism represents a vulnerability factor that either attenuates or amplifies the relationship of specific illness and depressive symptoms in these noncancer illness groups at the EOL. Identifying those high in neuroticism may provide insight into patient populations that require special care at the EOL.

To explore experiences of pediatric clinicians participating in a serious illness communication program (SICP) for advance care planning (ACP), examining how the SICP supports clinicians to improve their communication and the challenges of implementing new communication tools into clinical practice.

A qualitative description study using individual interviews with a diverse group of pediatric clinicians who participated in 2.5-hour SICP training workshops at pediatric tertiary hospitals. Discussions were transcribed, coded, and arranged into overarching themes. Thematic analysis was conducted using interpretive description methodology.

Fourteen clinicians from 2 Canadian pediatric tertiary hospital settings were interviewed, including nurses (36%), physicians (36%), and social workers (29%), from the fields of neonatology (36%), palliative care (29%), oncology (21%), and other pediatric specialties (14%). Key themes included specific benefits of SICP, with subthemes of connecting with families, increased confidence in ACP discussions, providing tools to improve communication, and enhanced self-awareness and self-reflection. A second theme of perceived challenges emerged, which included subthemes of not having the conversation guide readily accessible, divergent team communication practices, and particular features of the clinical environment which limited the possibility of engaging in ACP discussions with parents.

A structured program to enhance serious illness communication supports clinicians to develop skills and tools to increase their confidence and comfort in conducting conversations about end-of-life issues. Addressing challenges of adopting the newly learned communication practices, by providing access to digital SICP tools and conducting SICP training for clinical teams may further support clinicians to engage in ACP.

Dying is mostly seen as a dreadful event, never a happy experience. Yet, as palliative care physicians, we have seen so many patients who remained happy despite facing death. Hence, we conducted this qualitative study to explore happiness in palliative care patients at the University of Malaya Medical Centre.

Twenty terminally ill patients were interviewed with semi-structured questions. The results were thematically analyzed.

Eight themes were generated: the meaning of happiness, connections, mindset, pleasure, health, faith, wealth, and work. Our results showed that happiness is possible at the end of life. Happiness can coexist with pain and suffering. Social connections were the most important element of happiness at the end of life. Wealth and work were given the least emphasis. From the descriptions of our patients, we recognized a tendency for the degree of importance to shift from the hedonic happiness to eudaimonic happiness as patients experienced a terminal illness.

To increase the happiness of palliative care patients, it is crucial to assess the meaning of happiness for each patient and the degree of importance for each happiness domain to allow targeted interventions.

With a fraction of hospices having their Consumer Assessment of Healthcare Providers and Systems (CAHPS®) scores on Hospice Compare, a significant reservoir of hospice quality data remains in online caregiver reviews. The purpose of this study was to develop a method and model of hospice quality assessment from caregiver reviews using Watson’s carative model.

Retrospective mixed methods of pilot qualitative thematic analysis and sentiment analysis using NLP of Google and Yelp caregiver reviews between 2013 and 2023. We employed stratified sampling, weighted according to hospice size, to emulate the daily census of enrollees across the United States. Sentiment analysis was performed (n = 3393) using Google NLP.

Two themes with the highest prevalence had moderately positive sentiments (S): Caring staff (+.47) and Care quality, comfort and cleanliness (+.41). Other positive sentiment scores with high prevalence were Gratitude and thanks (+.81), “Treating the patient with respect” (+.54), and “Emotional, spiritual, bereavement support” (+.60). Lowest sentiment scores were “Insurance, administrative or billing” (–.37), “Lack of staffing” (–.32), and “Communication with the family” (–.01).

In the developed quality model, caregivers recommended hospices with caring staff, providing quality care, responsive to requests, and offering family support, including bereavement care. All ten Watson's carative factors and all eight CAHPS measures were presented in the discovered review themes of the quality model. Close-ended CAHPS scores and open-ended online reviews have substantial conceptual overlap and complementary insights. Future hospice quality research should explore caregiver expectations and compare review themes by profit status.

Typically pediatric end-of-life decision-making studies have examined the decision-making process, factors, and doctors’ and parents’ roles. Less attention has focussed on what happens after an end-of-life decision is made; that is, decision enactment and its outcome. This study explored the views and experiences of bereaved parents in end-of-life decision-making for their child. Findings reported relate to parents’ experiences of acting on their decision. It is argued that this is one significant stage of the decision-making process.

A qualitative methodology was used. Semi-structured interviews were conducted with bereaved parents, who had discussed end-of-life decisions for their child who had a life-limiting condition and who had died. Data were thematically analysed.

Twenty-five bereaved parents participated. Findings indicate that, despite differences in context, including the child’s condition and age, end-of-life decision-making did not end when an end-of-life decision was made. Enacting the decision was the next stage in a process. Time intervals between stages and enactment pathways varied, but the enactment was always distinguishable as a separate stage. Decision enactment involved making further decisions - parents needed to discern the appropriate time to implement their decision to withdraw or withhold life-sustaining medical treatment. Unexpected events, including other people’s actions, impacted on parents enacting their decision in the way they had planned. Several parents had to re-implement decisions when their child recovered from serious health issues without medical intervention.

A novel, critical finding was that parents experienced end-of-life decision-making as a sequence of interconnected stages, the final stage being enactment. The enactment stage involved further decision-making. End-of-life decision-making is better understood as a process rather than a discrete once-off event. The enactment stage has particular emotional and practical implications for parents. Greater understanding of this stage can improve clinician’s support for parents as they care for their child.

Timely, effective and personalized identification of the multidimensional needs in patients with advanced cancer are major goals of appropriate palliative care (PC) delivery. However, there is considerable variation in structures, processes, and patient demographics that might influence the intensity of end-of-life care. This study aims to characterize patterns in clinical and demographic characteristics at the inception point and their association with the intensity of care during the last month of life in advanced cancer patients assisted at home.

Cancer patients entered in home PC during 2020 in Italy were considered. The association between home PC services during the last month of life (primary outcome) and demographic data, performance status (Karnofsky Performance Score [KPS]), symptoms, and therapies at the entry was explored in this retrospective study.

Among 1,721 consecutive patients (919 in Centre-North and 802 in Centre-South Italy), patients from Centre-South were younger (p < 0.001), had worse KPS (p < 0.001), and shorter survival (p = 0.010). Patient age was inversely associated with the number of total/physician/nurses services during the last month of life (p < 0.001, p = 0.001, and p = 0.008, respectively). Patients with severe symptoms (asthenia, pain, and anxiety) at inception needed more PC services at the end of life (p = 0.026, p = 0.008, and p = 0.038, respectively). The distribution of workload differed according to the geographical area, with higher number of PC services provided by physicians (p < 0.001) in Centre-North and by nurses (p = 0.002) in Centre-South.

These findings highlight major disparity in access and nature of PC in a country with universal access to health services. Studies aimed at comparing PC models among different countries should pay attention to the local heterogeneity within each health-care system.

End-stage kidney disease and hemodialysis (HD) treatment are associated with a high symptom burden in many patients. This study aimed at updating patient-reported outcomes concerning quality of life, fatigue, anxiety, and depression in HD patients treated in a single center in order to assess the need for palliative care provision.

A cross-sectional design, in which a sample of patients treated at a single HD department (Rigshospitalet, Denmark) between January and June 2019, was analyzed using the Kidney Disease Quality of Life Short Form, the Multidimensional Fatigue Inventory, and the Hospital Anxiety and Depression Scale. In addition, we compared the results with previously published data from the same department (2000) and with an age- and sex-matched sample from the Danish general population (1997/2014). Chi-square and t-tests were used for comparisons.

Screened patients = 242, included = 141, analyzed = 131 (70.2% male, mean age = 61.3 years). HD patients reported low scores for quality of life, high scores for fatigue, and approximately 30% had anxiety/depression. Regarding quality of life, they had significantly lower scores on general health (P ≤ 0.000), vitality (P = 0.009), social functioning (P = 0.001), mental health (P = 0.007), and mental component (P = 0.005) compared with former data of HD patients. Moreover, they reported significantly poorer quality of life and worse fatigue compared with the general Danish population.

In the patients undergoing HD, quality of life was poor and worsened when compared with former HD patients’ data. Additionally, fatigue, depression, and anxiety in HD patients were prevalent. A clear need for palliative care provision was observed.

The Necesidades Paliativas CCOMS-ICO© (NECPAL) screening tool was developed to identify patients in need of palliative care and has been used in Israel without formal translation, reliability testing, or validation. Because cultural norms significantly affect subscales such as social vulnerability and health-care delivery, research is needed to comprehensively assess the NECPAL’s components, adapt it, and validate it for an Israeli health-care setting. This study linguistically and culturally translated the NECPAL into Hebrew to examine cultural and contextual acceptability for use in the Israeli geriatric health sector. The newly adapted tool was measured for itemized and scale-level content validity, inter-rater reliability (IRR), and construct validity.

The NECPAL was back-translated and its content validated by a 5-member expert panel for clarity and relevance, forming the Israeli-NECPAL (I-NECPAL). Six health-care professionals used the I-NECPAL with 25 post-acute geriatric patients to measure IRR. For construct validity, the known-groups method was used, as there is no “gold standard” method for identifying palliative needs for comparison with the NECPAL. The known groups were 2 fictitious cases, predetermined of palliative need. Thirty health-care professionals, blinded to the predetermined palliative status, used the I-NECPAL to determine whether a patient needs a palliative-centered plan of care.

The findings point to acceptable content and construct validity as well as IRR of the I-NECPAL for potential inclusion as a tool for identifying geriatric patients in need of palliative care. Content-validity assessment brought linguistic changes and the exclusion of the frailty parameter from the annex of chronic diseases. The kappa-adjusted scale-level content-validity index indicated a high level of content validity (0.96). IRR indicated a high level of agreement (all parameters with an “excellent–good” agreement level). The sensitivity (0.93), specificity (0.17), positive predictive value (0.53), and negative predictive value (0.71) revealed how heavily the scale weighed upon the surprise question. These metrics are improved when removing the surprise question from the instrument.

Similar to other countries, the Israeli health-care system is regulated by policies that portray the local beliefs and culture as well as evidence-based practice. The decision about when to switch a patient to a palliative-centered plan of care is one such example. It is thus of utmost importance that only locally adapted and vigorously tested screening tools be offered to health-care providers to assist in this decision. The I-NECPAL is the first psychometrically tested palliative needs identification tool for use in the geriatric population in Israel, on both a scale and an itemized level. The results indicate that it can immediately replace the current unvalidated version in use. Further research is needed to determine whether all parts of the scale are relevant for this patient population.

Within the multidisciplinary team, there can sometimes be lack of clarity as to the specific different contributions of each of the psycho-social-spiritual professionals: social workers, psychologist, and spiritual caregivers. This study examined the content of their end-of-life conversations with patients.

A total of 180 patients with terminal cancer received standard multidisciplinary care, including conversations with a social worker, psychologist, and spiritual caregiver. After each patient’s death, these professionals reported using a structured tool which content areas had arisen in their conversations with that patient.

Across all content areas, there were significant differences between social work and spiritual care. The difference between social work and psychology was slightly smaller but still quite large. Psychology and spiritual care were the most similar, though they still significantly differed in half the content areas. The differences persisted even among patients who spoke with more than 1 kind of professional. The 6 content areas examined proved to subdivide into 2 linked groups, where patients speaking about 1 were more likely to speak about the others. One group, “reflective” topics (inner and transpersonal resources, interpersonal relationships, one’s past, and end of life), included all those topics which arose more often with spiritual caregivers or psychologists. The second group, “decision-making” topics (medical coping and life changes), was comprised of those topics which arose most commonly with social workers, bridging between the medical and personal aspects of care and helping patients navigate their new physical, psychological, and social worlds.

These findings help shed light on the differences, in practice, between patients’ conversations with social workers, psychologists, and spiritual caregivers and the roles these professionals are playing; can aid in formulating individualized care plans; and strengthen the working assumption that all 3 professions contribute in unique, complementary ways to improving patients’ and families’ well-being.

When one explores the paths that sick people follow in search of meaning and a cure, one is quite likely to encounter religious knowledge and practices. Examining this facet and the spiritual experiences that arise therein leads us to the subject of identity, which systematically comes up as soon as we consider the impact of serious illness on people's lives. We need to follow the identity-building process that occurs in the disease, ruptures, and redefinitions if we are to understand how religious practices and knowledge contribute to the process.

This article discusses these elements using data collected in a qualitative research study of 10 cancer patients, carried out in Québec. Drawing on the sociology of religions, particularly the contemporary transformation of the religious and the spiritual, we attempted to understand the patients' spiritual experiences by focusing on the self-discovery that occurred through the initiatory ordeal of their illness.

We observe that these resources are particularly helpful when the patients use them to turn inwards, to pay attention to themselves, to unite the mind and body, to connect with something greater than themselves, and to transform their values so as to develop a new psychosocial version of themselves.

Our analysis shows that there is a complementary relationship between religion and illness at the crossroad of the identity-building process. This relevance demands to be attentive to the initiatory process that leads to the self-discovery and a renewal of the relationship with the self.

This study aimed to explore in a naturalistic, real-life setting the dynamics of trust in oncological consultations.

Cases to study were purposively selected from a data set of audio-recorded and transcribed consultations between oncology physicians and patients with advanced cancer, and analyzed qualitatively. The analytical approach was deductive, relying on a thematic framework of dimensions of trust, and inductive, not restricted by this framework.

The multiple case study approach allowed to identify factors, which play a role in the dynamics of trust. These factors are the number of treating physicians and how they communicate, continuity of care and the capital of trust, the hierarchical position of the physician and the physician's self-trust, and the patient's personality.

The findings illustrate the importance to contextualize trust in the flow of oncological consultations and to conceive it comprehensively for each singular encounter between patients and clinicians.

The difficulties in conducting palliative care research have been widely acknowledged. In order to generate the evidence needed to underpin palliative care provision, collaborative research is considered essential. Prior to formalizing the development of a research network for the state of Victoria, Australia, a preliminary study was undertaken to ascertain interest and recommendations for the design of such a collaboration.

Three data-collection strategies were used: a cross-sectional questionnaire, interviews, and workshops. The questionnaire was completed by multidisciplinary palliative care specialists from across the state (n = 61); interviews were conducted with senior clinicians and academics (n = 21) followed by two stakeholder workshops (n = 29). The questionnaire was constructed specifically for this study, measuring involvement of and perceptions of palliative care research.

Both the interview and the questionnaire data demonstrated strong support for a palliative care research network and aided in establishing a research agenda. The stakeholder workshops assisted with strategies for the formation of the Palliative Care Research Network Victoria (PCRNV) and guided the development of the mission and strategic plan.

The research and efforts to date to establish the PCRNV are encouraging and provide optimism for the evolution of palliative care research in Australia. The international implications are highlighted.