A qualitative interpretive-systemic focus group study was conducted to examine the developmental and implementational underpinnings of Asia's first national Advance Care Planning (ACP) programme constituted in Singapore.

63 physicians, nurses, medical social workers, and allied health workers who actively rendered ACP were purposively recruited across seven major public hospitals and specialist centers.

Framework analysis revealed 19 themes, organized into 5 categories including Life and Death Culture, ACP Coordination, ACP Administration, ACP Outcomes, and Sustainability Shift. These categories and themes formed an Interpretive-Systemic Framework of Sustainable ACP, which reflects the socio-cultural, socio-political, and socio-spiritual contexts that influence ACP provision, highlighting the need to adopt a public health strategy for enhancing societal readiness for end-of-life conversations.

The Interpretive-Systemic Framework of Sustainable ACP underscores the importance of health policy, organizational structure, social discourse, and shared meaning in ACP planning and delivery so as to support and empower care decision-making among terminally ill Asian patients and their families facing mortality.

Family caregivers (FCs) of cancer patients often experience high distress. This randomized clinical trial assessed the feasibility and preliminary effects of an intervention to improve FC supportive care.

A pragmatic and minimal intervention to improve FC supportive care was developed and pretested with FCs, oncology team, and family physicians to assess its relevance and acceptability. Then, FCs of lung cancer patients were randomized to the intervention or the control group. The intervention included (1) systematic FC distress screening and problem assessment in the first months after their relative cancer diagnosis, and every 2 months after; (2) privileged contact with an oncology nurse to address FC problems, provide emotional support and skills to play their caregiving role; (3) liaison with the family physician of FCs reporting high distress (distress thermometer score ≥4/10) to involve them in the provision of supportive care. Distress, the primary outcome, was measured every 3 months, for 9 months. Secondary outcomes included quality of life, caregiving preparedness, and perceived burden. At the end of their participation, a purposive sample of FC from the experimental group was individually interviewed to assess the intervention usefulness. Content analysis was performed.

A total of 109 FCs participated in the trial. FC distress decreased over time, but this reduction was observed in both groups. Similar results were found for secondary outcomes. However, FCs who received the intervention felt better prepared in caregiving than controls (p = 0.05). All 10 interviewed FCs valued the intervention, even though they clearly underused it. Knowing they could contact the oncology nurse served as a security net.

Although the intervention was not found effective, some of its aspects were positively perceived by FCs. As many of them experience high distress, an improved intervention should be developed to better support them.

South Asian migrants have a higher burden of life-threatening diseases and chronic diseases compared to other ethnic groups. Yet, knowledge gaps remain around their palliative care needs in the host countries. The aim of the review was to present results from a systematic literature review of available international evidence on experiences with and perspectives on palliative care among older South Asian migrants, relatives, and healthcare providers.

A systematic review in accordance with PRISMA guidelines was conducted in February 2018, searching PubMed, CINAHL, PsychINFO, and EMBASE databases. PROSPERO #CRD42018093464. Studies included empirical research, providing international evidence on experiences and perspectives on palliative care of South Asian migrants and were published between 2000 and 2018. Thematic synthesis was used to analyze data.

A total of 30 articles were included: qualitative (24), quantitative (5), and mixed methods (1). Three main themes were discovered: 1) palliative care practice within the family, 2) trust as a precondition of palliative care, and 3) the importance of knowledge and cultural competency. All the themes, to a greater or lesser extent, are related to access to and use of palliative care services by South Asian migrant families.

Involvement of family members in palliative care decision making could improve the satisfaction of South Asian migrant families toward the service. For example, Advanced Care Planning involving family members could be a possible way to engage family members in palliative care decision making. Supportive interventions, e.g. providing knowledge, aimed at patients and their family members might improve knowledge and increase awareness among South Asian migrant families of palliative care. Knowledge gained from this review could be implemented with other ethnic minority groups.

This scoping review describes the existing literature which examines the breadth of healthcare providers’ (HCP's) experiences with the provision of medical assistance in dying (MAiD).

This study employed a scoping review methodology: (1) identify research articles, (2) identify relevant studies, (3) select studies based on inclusion/exclusion criteria, (4) chart the data, and (5) summarize the results.

In total, 30 papers were identified pertaining to HCP's experiences of providing MAiD. Fifty-three percent of the papers were from Europe (n = 16) and 40% of studies were from the USA or Canada (n = 12). The most common participant populations were physicians (n = 17) and nurses (n = 12). This scoping review found that HCPs experienced a variety of emotional responses to providing or providing support to MAiD. Some HCPs experienced positive emotions through helping patients at the end of the patient's life. Still other HCPs experienced very intense and negative emotions such as immense internal moral conflict. HCPs from various professions were involved in various aspects of MAiD provision such as responding to initial requests for MAiD, supporting patients and families, nursing support during MAiD, and the administration of medications to end of life.

This review consolidates many of the experiences of HCPs in relation to the provision of MAiD. Specifically, this review elucidates many of the emotions that HCPs experience through participation in MAiD. In addition to describing the emotional experiences, this review highlights some of the roles that HCPs participate in with relation to MAiD. Finally, this review accentuates the importance of team supports and self-care for all team members in the provision of MAiD regardless of their degree of involvement.

Hospice is an important method of promoting quality end-of-life (EoL) care, yet its utilization is relatively low in underserved populations. The unique characteristics of a border community—such as a lack of healthcare resources and cultural integration—impact EoL decision making. The aim of our study was to assess the willingness to use hospice care services and its predictors among family caregivers of Latino patients in the United States (U.S.)–Mexico border region of Southern California.

This study analyzes secondary data from a home health agency in the U.S.–Mexico border region. Quantitative data were collected via a face-to-face interview with 189 caregivers of patients enrolled in the agency. Bivariate tests and logistic regression were employed to address our study objectives.

The majority (83%) of family caregivers were willing to use hospice services for their loved ones. The factors impacting willingness to use hospice services included the primary language of the caregiver (OR = 6.30, CI95% = 1.68, 23.58); trust in doctors to make the right decisions (OR = 3.77, CI95% = 1.05, 13.57); and the belief that using hospice care means giving up on life (OR = 0.52, CI95% = 0.30; 0.88). Caregivers who trusted doctors to make the best decisions for their loved ones and English-speaking caregivers were more willing to utilize hospice services, while caregivers who held a strong belief that hospice care means giving up on life were less likely to consider using hospice care for their loved ones.

The willingness of family caregivers to use hospice services for their loved ones is influenced by cultural perspectives about hospice care. As the importance of family involvement in EoL care planning has been highlighted, family caregivers' beliefs about hospice care services need to be addressed within their particular cultural context.

Posttraumatic growth (PTG) refers to positive psychological changes resulting from individuals’ inner struggles with traumatic events such as life-threatening illness. Although palliative care patients are confronted with their own mortality, little is known about their PTG experience. This study investigates whether PTG is an empirically relevant concept for palliative patients by assessing the prevalence and areas of growth, and examining associations with psychological distress and quality of life.

Participants were recruited in Switzerland. Using validated questionnaires, we assessed PTG (Posttraumatic Growth Inventory, PTGI), psychological distress (Hospital Anxiety and Depression Scale), and quality of life (McGill-Quality of Life Questionnaire – Revised). We performed descriptive analyses, Spearman correlations, and linear regressions.

Fifty-five patients completed the PTGI, 44% of whom experienced no/low growth, 47% moderate growth, and 9% high/very high growth. Participants experienced the greatest positive changes in terms of appreciating life and relating to others. We found significant negative bivariate correlations between PTG and psychological distress (r = −0.33) and between PTG and depression (r = −0.47). Linear regressions showed that PTG is associated with depression (β = −0.468; p = 0.000), but not with anxiety or quality of life (adjusted R2 = 0.219).

Over half of our patients experienced moderate to very high growth, indicating that PTG is an empirically relevant psychological process in palliative care. PTG is associated with lower levels of depression, possibly as those experiencing growth are more able to process past traumas and build a more positive outlook on one's life and self. By contrast, the relative independence of anxiety and PTG points to the likely coexistence of positive and negative psychological responses to trauma. The lack of association between PTG and quality of life points to the uniqueness of the PTG concept in capturing how people access deeper meaning and greater appreciation of life along the path toward posttraumatic self-reconstruction.

This study aims to (i) develop a screening tool for determining distress and supportive care needs of adolescent and young adult cancer patients (AYAs) based on the NCCN's Distress Thermometer and Problem List (DTPL), (ii) evaluate its feasibility, discriminant validity, and test–retest reliability in clinical settings, and (iii) report prevalence of distress and unmet needs.

In the development phase, after translation of the Japanese version of the DTPL (DTPL-J) from English into Japanese and back translation, cognitive debriefing was performed. Items in the problem list were modified to better reflect AYAs’ concerns after interviews. The modified items were reviewed and accepted unanimously by healthcare professionals. In the feasibility phase, the DTPL-J for AYAs was used in a clinical setting for 3 months. Descriptive statistics of participants’ demographics, selected items, and DT scores were calculated to report prevalence of distress and unmet needs. Response and referral rates to experts were assessed to evaluate feasibility. Some items were compared with patient demographics to assess discriminant validity. Among the patients who responded at least twice, correlations between two consecutive screenings were assessed to evaluate test–retest reliability.

The DTPL-J consisted of 49 items in five categories. Of 251 patients, 232 (92.4%) were provided the DTPL-J and 230 (91.6%) responded. Based on the DT cutoff of ≥4, 69 of 230 patients (30%) had high distress. Anxiety (n = 85, 36.6%) was the most commonly selected item. Primary nurses referred 45 (21.7%) patients to an attending physician or another expert. Referral rates after DTPL-J use were higher than rates before use, but the difference was not statistically significant (p = 0.06). The items compared were consistent with their social background. A positive correlation was observed between two responses for some items.

The feasibility, discriminant validity, and test–retest reliability of the tool were suggested.

This paper aims to clarify our understanding of fear and explore the strategies employed by people with life-limiting conditions and their caregivers in addressing the emotion of fear as they journey through the dying process. The role of fear is discussed: different kinds of fear, the tangible and intangible measures by which people manage their fear, and the ways of transcending fear.

The findings of a larger research project funded by the Australian Department of Health and Ageing are drawn upon. In-depth interviews were conducted with clients and caregivers relating to the psychosocial and emotional issues in palliative care. Secondary analysis was utilized to examine the perceptions of fear in this cohort.

While there were many other findings, the results highlighted in this paper relate to the notion of fear among interview participants. Interview data showed that people with life-limiting conditions and their caregivers had different types of fear and employed a variety of strategies to deal with fear. Four themes emerged embodying these strategies: calling on their own resilience and inner resources, maintaining human relationships, gaining the ability to “keep one step ahead” in the dying process, and engaging in spirituality and religion.

The implications of the findings for healthcare professionals are highlighted. The recognition of emotions is embedded in palliative care; healthcare professionals should view the management of emotions as an integral part of professional practice. Addressing fear is essential because unresolved fear can impinge on one's ability to cope. Our paper brings together different perspectives on fear and how vulnerable individuals attempt to cope with it while at the same time providing a view of the challenges confronting healthcare professionals who are engaged with them and committed to optimizing health outcomes for palliative care clients and their caregivers.

Dignity therapy (DT) is a kind of psychotherapy that identifies the main concerns of end-of-life patients that affect their perception of dignity and helps them to find a new meaning in life. Most prior studies on DT analyze outcomes for palliative care patients. The aim of this systematic review is to explore the outcomes of DT in palliative care patients’ family members.

In June 2020, a bibliographic search was performed using the terms “Dignity Therapy” and “Palliative Care” in the following databases: Cochrane library, TRIP database, PUBMED, Scopus, and Web of Knowledge. Of the 294 articles found, 8 met the selection criteria and were considered in the present study. No articles were excluded based on their publication date.

Family members generally believe that DT helps them to better prepare the patient's end-of-life and overcome the bereavement phase. The legacy document was considered a source of comfort, and most would recommend DT to other people in their situation. DT is generally considered as important as any other aspect of the patient's treatment.

There is evidence of the benefits of DT for palliative patients’ family members. However, there are still few studies that evaluate these outcomes. The existing evidence is poorly generalized, and thus, further studies are needed to deeply explore the benefits of this therapy both for patients and their families.

Insight into symptoms as predictors for anxiety may help to foster early identification of anxiety and to ameliorate anxiety management. The aim of this study was to determine which frequently occurring symptoms are predictors for anxiety in advanced cancer patients recently admitted to a hospice.

Symptom burden was measured in patients admitted to a hospice who died ≤3 month after admission using the Utrecht Symptom Diary. This is a Dutch-translated and adapted version of the Edmonton Symptom Assessment System to self-assess the 11 most prevalent symptoms and overall well-being on a 0–10 numerical rating scale. Multiple linear regression analysis was employed to analyze the predictive value of fatigue, nausea, pain, dyspnea, depressed mood, insomnia, and well-being on anxiety.

A total of 211 patients were included, 42% of whom were men, and the median age was 71 years (range = 31–95). Anxiety was uncommon and rarely severe: 25% had a score ≥1, and 14% had a score >3. After correction for age, gender, and marital status, depressed mood (p = 0.00) and dyspnea (p = 0.01) were independent predictors for anxiety and explained 23% of the variance in anxiety.

Hospice inpatients with advanced cancer who suffer from dyspnea and/or depressed mood are at increased risk for anxiety. Treatment of dyspnea and depressed mood may contribute to adequate anxiety management. Further research should explore other factors associated with anxiety, especially in the psychological, social, and spiritual domains.

The death of a person is a stressful event. Such stress affects the physical and psychological well-being of the bereaved. As an associated mental disorder, major depressive disorder (MDD) is common. Some dream of the deceased, and these dreams are called bereavement dreams. Some MDD patients also experience dreams. These two types of dreams are sometimes difficult to differentiate. The dream of the bereaved might be only a bereavement-related dream, yet it might be a symptom of MDD. Herein, we report one patient who had distressing dreams after the death of her mother.

A 63-year-old woman was referred for psychiatric consultation because of generalized fatigue and insomnia. Questioning her about recent events, she said that her mother had died of colonic carcinoma 5 months previously. Two months after the death, she suddenly started dreaming of her mother, getting angry with her almost every night. Generalized fatigue, insomnia, and distressing dreams appeared simultaneously. The dream caused much distress, making her afraid to fall asleep.

Her psychiatric features fulfilled the DSM-IV-TR criteria for MDD, single episode. The death of her mother was considered to be one of the causes of MDD. She was administered 25 mg/day of sertraline hydrochloride. After that, her symptoms gradually disappeared, and the frequency of distressing dreams was reduced. Five months later, physical and psychiatric symptoms of MDD were completely resolved. Subsequently, she has not suffered from any distressing dreams of her mother.

This case indicates that dreams experienced after the death of a loved one should not be regarded simply as bereavement dreams. Some of the dreams may be symptoms of MDD. If the dreams are the symptoms of MDD, antidepressant treatment as well as psychotherapy may be useful. Therefore, we should avoid regarding symptoms of MDD as reactions to bereavement.

End-of-life and anticipatory medications (AMs) have been widely used in various health care settings for people approaching end-of-life. Lack of access to medications at times of need may result in unnecessary hospital admissions and increased patient and family distress in managing palliative care at home. The study aimed to map the use of end-of-life and AM in a cohort of palliative care patients through the use of the Population Level Analysis and Reporting Data Space and to discuss the results through stakeholder consultation of the relevant organizations.

A retrospective observational cohort study of 799 palliative care patients in 25 Australian general practice health records with a palliative care referral was undertaken over a period of 10 years. This was followed by stakeholders’ consultation with palliative care nurse practitioners and general practitioners who have palliative care patients.

End-of-life and AM prescribing have been increasing over the recent years. Only a small percentage (13.5%) of palliative care patients received medications through general practice. Stakeholders’ consultation on AM prescribing showed that there is confusion about identifying patients needing medications for end-of-life and mixed knowledge about palliative care referral pathways.

Improved knowledge and information around referral pathways enabling access to palliative care services for general practice patients and their caregivers are needed. Similarly, the increased utility of screening tools to identify patients with palliative care needs may be useful for health care practitioners to ensure timely care is provided.

Depression is a serious issue for cancer patients, resulting in impaired quality of life and probably shorter survival. However, many cancer patients with depression are not treated because of the difficulties in identifying depression within this population. Our study aimed to examine caregivers' perceptions of depression among advanced cancer patients.

This qualitative study employed semistructured interviews, and we analyzed data using grounded theory and qualitative methods. We recruited caregivers from our palliative care unit (PCU) at an academic medical center.

We interviewed a total of 15 caregivers. Cancer patients' caregivers had a good theoretical knowledge of depression but also acknowledged that, in the context of cancer and because of their relationship with the patient, identification of depressive symptoms could be challenging. They considered themselves as partners in the patient's care with a supportive role. However, by assuming the role of partner in patient care, caregivers exposed themselves to emotional difficulties and an increased need for support and information.

Our results suggest a significant impact of depression in advanced cancer caregivers, and it is therefore crucial that healthcare professionals develop educational programs targeting cancer patients' families as well as specific interventions to minimize the impact of the burden of patient care on caregivers.

Chronic heart failure is a disease with high morbidity and symptom burden for patients, and it also places great demands on family members. Patients with heart failure should have access to palliative care for the purpose of improving quality of life for both patients and their families. In the PREFER randomized controlled intervention, patients with New York Heart Association classes III–IV heart failure received person-centered care with a multidisciplinary approach involving collaboration between specialists in palliative and heart failure care. The aim of the present study was to describe family members' experiences of the intervention, which integrated palliative advanced home and heart failure care.

This study had a qualitative descriptive design based on family member interviews. Altogether, 14 family members participated in semistructured interviews for evaluation after intervention completion. The data were analyzed by means of content analysis.

Family members expressed gratitude and happiness after witnessing the patient feeling better due to symptom relief and empowerment. They also felt relieved and less worried, as they were reassured that the patient was being cared for properly and that their own responsibility for care was shared with healthcare professionals. However, some family members also felt as though they were living in the shadow of severe illness, without receiving any support for themselves.

Several benefits were found for family members from the PREFER intervention, and our results indicate the significance of integrated palliative advanced home and heart failure care. However, in order to improve this intervention, psychosocial professionals should be included on the intervention team and should contribute by paying closer attention and providing targeted support for family members.

We sought to determine the frequency with which hospice and palliative social workers encounter patients, family caregivers, and other clients at risk of suicide, and to discover the extent to which hospice and palliative social workers feel prepared to address issues related to suicide in their professional practice.

We conducted a cross-sectional survey of hospice and palliative social workers, recruiting a convenience sample of volunteer respondents through advertisements at professional conferences and listservs, and via social media accounts associated with national organizations, state hospice and palliative care associations, and individual healthcare professionals.

Most respondents reported having worked with patients, family caregivers, or other clients who had exhibited warning signs of suicide during the previous year. Fewer respondents indicated that they had worked with patients and family members who had attempted or died by suicide. While the majority of respondents believed they possessed sufficient knowledge and skills to intervene effectively with individuals at risk of suicide, they indicated that additional education on this topic would be valuable for their professional practice.

These study results suggest that suicide-related competencies are important in the practice of hospice and palliative social work. Future education and training efforts should include skill development in addition to knowledge building.

The objective of this training project is to develop and host Interprofessional Communication courses to improve interdisciplinary communication in oncology care. The initial national course was held in a virtual format and included pre- and post-course participant data. The curriculum was developed with support from the National Cancer Institute.

A virtual two-day course was held to equip nurses, social workers, and chaplains with vital communication skills in oncology practice, so that they could return to their home institutions and teach communication skills to other healthcare professionals, with the intention of making improved communication a quality improvement goal. Fifty-two participants were selected through an application process to attend the virtual course in two-person interprofessional teams (e.g., nurse and chaplain, or social worker and nurse). The Interprofessional Communication Curriculum was based on the National Consensus Project for Quality Palliative Care's eight domains of quality palliative care. The six online modules developed by the investigators were presented in lectures, supplemented by discussion groups, role plays, and other methods of experiential learning.

Pre- and post-course results identified areas of communication, which are a priority for improvement by oncology clinicians. Participant goals identified specific strategies to be implemented by participants in their settings.

The need for communication training was clearly demonstrated across professions in this national training course. Participants were able to apply course content to their goals for quality improvement in cancer settings.

Pain treatment is an essential component of care for elderly patients with advanced dementia. The objective of this study was to identify and analyze the different scales used for pain assessment in elderly persons diagnosed with dementia, in the literature available at the Latin American level.

A systematic review was performed on the existing scales for pain assessment in elderly people diagnosed with Alzheimer's disease, vascular dementia, and dementia with Lewy bodies.

226 articles were retrieved from the PUBMED, BIREME, and Scielo databases, of which a total of 10 articles entered the systematic review. The instruments identified in these publications were PAINAD, Abbey, McGill, and PACSLAC, while the Colored Pain Scale, Faces Pain Scale, and VAS scales were used as the silver standard. In Spanish, the Abbey scale, and in Portuguese, the PACSLAC scale showed the best reliability and validity coefficients.

It is concluded that there are only two appropriate scales for the assessment of pain in people with dementia in the region of interest of this study. It is recommended to generate more evidence for a more accurate assessment of pain in people with dementia.

The overall aim of this study was to discover how chaplains assess their role within ethically complex end-of-life decisions.

A questionnaire was sent to 256 chaplains working for German health care institutions. Questions about their role and satisfaction as well as demographic data were collected, which included information about the chaplains' integration within multi-professional teams.

The response rate was 59%, 141 questionnaires were analyzed. Respondents reported being confronted with decisions concerning the limitation of life-sustaining treatment on average two to three times per month. Nearly 74% were satisfied with the decisions made within these situations. However, only 48% were satisfied with the communication process. Whenever chaplains were integrated within a multi-professional team there was a significantly higher satisfaction with both: the decisions made (p = 0.000) and the communication process (p = 0.000).

Although the results of this study show a relatively high satisfaction among surveyed chaplains with regard to the outcome of decisions, one of the major problems seems to reside in the communication process. A clear integration of chaplains within multi-professional teams (such as palliative care teams) appears to increase the satisfaction with the communication in ethically critical situations.