Journal of Palliative Care

Background: Previous research unambiguously establishes the importance of knowledge and education about opioids and pain management in medical care. This article aimed at describing the perception of the general public on the uses and the risks of morphine in palliative care in an Ecuadorian sample, where training and access to those services is limited. Methods: We used an online recruited sample of 257 participants for this cross-sectional descriptive study. Participants responded to an online self-report survey regarding morphine’s effects and its relationship with addiction and death in a palliative care context. Results: Analyses indicate that there is a lack of understanding about the effectiveness of morphine and that, overall, participants did not associate morphine with death and dying. Results also show that people in health-related occupations did not differ from the general public in beliefs about the addiction and the effectiveness of morphine. However, occupation and education effects were noted for several other items, as well as whether the participants had direct experiences with palliative care as either a patient or a caregiver. Conclusions: There is still misinformation about opioids such as morphine in the general public and health professionals in Ecuador. Although personal experiences with pain control and palliative care are linked to better knowledge about opioids, education is still necessary to overcome the myths around them. Future research could address the found misconceptions to increase health literacy through education policies and interventions.

Background: The brachial plexus nerves originate from the cervical (C5-C8) and first thoracic (T1) spinal nerves, and innervate muscles and skin of the chest, shoulder, arm and hand. Brachial plexus injuries can occur as a result of shoulder trauma and inflammation. Malignant tumors can also cause neoplastic brachial plexopathy (NBP), and refractory neuropathic pain is the most common symptom of NBP. Methadone is a synthetic opioid with high efficacy as an opioid-receptor agonist, and its inhibitory effects on N-methyl-D-aspartate (NMDA) may play a role in pain relief. However, there is a need to examine if oral methadone exhibits safety and efficacy against neuropathic pain due to NBP. Case Presentations: NBP was diagnosed in 3 cases without brain or cervical spine metastasis. The clinical features of these patients were analyzed retrospectively. None of the cases had an indication for surgery because of advanced cancer and all had received radiation therapy that had an insufficient effect, prior to methadone treatment. All 3 patients had nociceptive and neuropathic pain. Methadone for refractory pain was initiated using the stop-and-go method. NRS pain scores decreased in all cases and there were no severe side effects. Discussion: For the purpose of pain relief, patients with NBP may receive surgery, radiation therapy and nerve block, but these are not always effective. Methadone was recently shown to be superior to fentanyl in treating neuropathic pain in patients with head-and-neck cancer in a RCT, and our findings suggest that methadone may also be effective for patients with NBP. Conclusion: More studies are necessary, but results in 3 cases suggest that oral methadone may be a safe analgesic agent for patients with neuropathic pain due to NBP.

Background: Skin disorders and neuropathy often occur as side effects of chemotherapy. We encountered a patient who was treated for drug-induced skin symptoms, but the symptoms did not improve, and he was eventually diagnosed as having dermatomyositis. Case presentation: A 71-year-old man underwent chemotherapy with regorafenib in February 2020 for the postoperative recurrence of sigmoid colon cancer, but treatment was discontinued after about 2 months owing to the appearance of skin symptoms, which were thought to be side effects of regorafenib. Subsequently, his symptoms further worsened, and he was hospitalized 3 weeks after the appearance of the initial skin symptoms, and a palliative care team was asked to relieve his back pain caused by the drug-induced skin symptoms. Erythema was widely observed on the lower back and limbs, and he experienced needle stick-like pain. Furthermore, the patient demonstrated difficulty in lifting both upper limbs. As acetaminophen was effective for his pain, the dose was slowly increased with careful observation. The cause of the patient’s muscle weakness was unclear, and after careful discussion of the possible causes among specialists in dermatology, neurology, and rheumatoid arthritis, a diagnosis of dermatomyositis associated with the malignant tumor was made about 10 days after his admission. The patient’s symptoms gradually improved with steroid pulse treatment (methylprednisolone 1 g/day for 3 days) followed by high-dose gamma globulin treatment (2.5 g/day for 5 days), and the patient was discharged 48 days after admission. Discussion: Because this patient was referred to a palliative care team for the purpose of relieving pain caused by skin symptoms associated with chemotherapy, a crucial point is the symptoms were treated as side effects of the chemotherapy from the beginning. As neuropathy can occur as a result of chemotherapy, the pain and muscle weakness could be explained at the time; however, the symptoms continued to worsen even after the chemotherapy was stopped. Because the symptoms were not typical of polymyositis/dermatomyositis, diagnosis of the patient was delayed, even though he was treated in each specialized department. Our present case indicates that paraneoplastic syndrome should always be kept in mind when treating cancer patients.

Background: The quality of palliative and end-of-life (EOL) care for adolescents and young adults (AYAs) with cancer remains largely unknown. Objective: To describe caregivers of AYA cancer decedents perspectives’ on EOL care quality related to EOL care communication. Design: Cross-sectional observational study. Setting/Subjects: Caregivers (n = 35) of AYAs who died from a cancer diagnosis from 2013-2016 were recruited from 3 U.S. academic medical centers. Measurements: Caregiver participants completed structured surveys (FAMCARE scale and the Toolkit After-Death Bereaved Family Member Interview) by telephone to gather perceptions of quality of EOL care of their AYA cancer decedents. Results: Caregivers reported unmet needs regarding preparation for the time of death (50%), the dying process (45%) and unmet spiritual/ religious needs (38%). Lowest quality of EOL care scores related to communication and emotional support. Conclusions: Our findings call for special focus on providing information about what to expect during the dying process and adequately addressing spiritual and religious preferences during EOL care for AYAs.

COVID-19 has stressed the healthcare system in ways our society has not seen before. Less visibly, elderly patients and their caregivers have been stressed as well, both by the virus and by the public health measures required to slow its spread. After months of isolating, patients with dementia and their caregivers are worried about reentering a society with different rules and expectations. Although an extremely complex topic, the re-entry of individuals with cognitive impairment back into society is critical for both the wellbeing of the person as well as the caregiver. Successful re-entry into society will vary based on a person’s interests and baseline cognition, however, the ability to participate in activities and events that previously provided joy and stimulation is the first step. This paper, written by practicing geriatricians and palliative clinicians, offers some concrete counseling strategies and tips for caregivers to help navigate re-entry into society with their loved ones.

Objectives: The Do-Not-Resuscitate (DNR) order is part of most hospitals’ policies on the process of making and communicating decisions about a patient's resuscitation status. Yet it has not become a part of our society's ritual of dying in the Middle East especially among children. Given the diversity of pediatric patients, the DNR order continues to represent a challenge to all parties involved in the care of children including the medical team and the family. Methods: This was a retrospective review of the medical charts of patients who had died in the pediatric intensive care unit (PICU) of a tertiary academic institution in Beirut, Lebanon within the period of January 2012 and December 2017. Results: Eighty-two charts were extracted, 79 were included in the analysis. Three were excluded as one patient had died in the Emergency Department (ED) and 2 charts were incomplete. Most patients were male, Lebanese, and from Muslim families. These patients clinically presented with primary cardiac and oncological diseases or were admitted from the ED with respiratory distress or from the operating room for post-operative management. The primary cause of death was multiorgan failure and cardiac arrest. Only 34% of families had agreed to a DNR order prior to death and 10% suggested “soft” resuscitation. Most discussions were held in the presence of the parents, the PICU team and the patient's primary physician. Conclusions: The DNR order presents one of the most difficult challenges for all care providers involved, especially within a culturally conservative setting such as Lebanon. As the numbers suggest, it is difficult for parents to reach the decision to completely withhold resuscitative measures for pediatric patients, instead opting for “soft” resuscitations like administering epinephrine without chest compressions.

Background: There are no validated tools for measuring eating-related distress among patients with advanced cancer. Objective: The aim of the study was to investigate the potential measurement properties of a questionnaire for eating-related distress. Methods: This is a secondary analysis. We performed an exploratory factor analysis for factorial validity and calculated Cronbach’s α for internal consistency. Patients were classified into the 2 groups categorized using the international cachexia criteria. The total scores of each factor and all items were calculated, and comparisons were performed for known-group validity. We performed statistical correlation analysis for concurrent validity, convergent validity, and discriminant validity using Pearson’s product moment correlation coefficient. Results: A total of 140 patients responded. Three factors were identified. The values of Cronbach’s α were 0.90, 0.89, and 0.86, respectively. Patients were classified into 2 groups: Non-cachexia/Pre-cachexia (n = 57) and Cachexia/Refractory cachexia (n = 83). Significant differences were observed in the total scores of each factor and all items: (factor 1) 7.5 vs. 11.0, p < 0.001; (factor 2) 8.0 vs. 13.0, p < 0.001; (factor 3) 5.0 vs. 10.0, p < 0.001; (all items) 20.0 vs. 35.0, p < 0.001, respectively. The total scores of each factor and all items significantly correlated with the Edmonton Symptom Assessment System-revised and the nutrition impact symptoms: 0.62 (p < 0.001) and 0.63 (p < 0.001), respectively. Scaling success rates were 100% in factor 1, 2, and 3. Conclusion: The questionnaire appears to be useful. Eating-related distress in patients with advanced cancer had 3 factors.

Objective: The purpose of the study was to examine associations between self-esteem and symptoms of anxiety and depression among young adults who lost a parent to cancer. Methods: Older adolescents and young adults, aged 16 to 28 years, who had lost their parent to cancer and had accepted an invitation to join a support group, completed a questionnaire 5 to 8 months after the loss and a similar questionnaire about 10 months later (follow-up). Of a total of 77 young adults who participated in the study, 56 completed both questionnaires. Self-esteem was measured with the Rosenberg Self-Esteem Scale. Symptoms of anxiety and depression were measured with the Hospital Anxiety and Depression Scale. Univariate and multiple linear regression models were used to analyze the associations. Result: Self-esteem was significantly associated with symptoms of anxiety and depression at baseline and at follow-up. Conclusion: This study reveals that self-esteem is a valuable explanatory variable, and that it is associated with both symptoms of anxiety and depression in bereavement. This new knowledge could be used to guide future support to parentally bereaved young adults.

Hospice and palliative care teams face numerous barriers to the meaningful involvement of patients and families in medical decision making, which limits opportunities for exploration of the very values, preferences, and goals that ideally inform serious illness care. Researchers who develop and test interventions to address these barriers have noted the complementary utility of two existing models in supporting collaborative relationships between hospice and palliative care teams and the patients and families they serve: (1) the social problem-solving model, and (2) the integrative model of shared decision making in medical encounters. This paper describes the integration and extension of these two highly synergistic models, resulting in a goal-directed model of collaborative decision making in hospice and palliative care. Directions for practice innovation and research informed by the model are discussed at length.

Background: Patients with advanced chronic obstructive pulmonary disease (COPD) have a significant symptom burden despite maximal medical therapy, yet few are referred for concomitant palliative care. Objective: To evaluate the utilization and impact of palliative care on the location of death and to identify clinical variables associated with palliative care contact. Design: Retrospective chart review from 2010 to 2016 at the VA Western New York Healthcare System using ICD-9/10 diagnosis of COPD. Palliative care contact was identified by Z51.5 or stop code 353. Results: Only 0.5% to 2% of living patients received palliative care, increasing abruptly at death (6%). Lower diffusion capacity for carbon monoxide (DLCO) (greater emphysema) was associated with palliative care contact, independent of comorbid disease burden or age. Initial outpatient contact was associated with a longer duration of palliative care (P = .003) and death in a home-like setting. Outpatient palliative care was associated with more severe airflow obstruction (forced expiratory volume in 1 second, percent predicted [FEV1%]), whereas greater disease exacerbation frequency was associated with inpatient contact. COPD patients not referred to palliative care had a greater comorbid disease burden, similar FEV1%, fewer disease exacerbations, and a greater DLCO. Conclusion: Few patients with COPD received palliative care, similar to national trends. Initial outpatient palliative contact had the longest duration of care and death in the preferred home environment. The extent of emphysema (DLCO reduction) and more frequent disease exacerbations identified in patients were more likely to receive palliative care. Our study begins to define the benefits of palliative care in advanced COPD and confirms underutilization in the years before death, where a prolonged impact on the quality of life may be realized.

Objectives: Patients with chronic respiratory insufficiency suffer from advanced disease, but their overall symptom burden is poorly described. We evaluated the symptoms and screening of depression in subjects with chronic respiratory insufficiency by using the Edmonton symptom assessment system (ESAS). Methods: In this retrospective study, 226 subjects with chronic respiratory insufficiency answered the ESAS questionnaire measuring symptoms on a scale from 0 (no symptoms) to 10 (worst possible symptom), and the depression scale (DEPS) questionnaire, in which the cut-off point for depressive symptoms is 9. Results: The most severe symptoms measured with ESAS (median [interquartile range]) were shortness of breath 4.0 (1.0-7.0), dry mouth 3.0 (1.0-7.0), tiredness 3.0 (1.0-6.0), and pain on movement 3.0 (0.0-6.0). Subjects with a chronic obstructive pulmonary disease as a cause for chronic respiratory insufficiency had significantly higher scores for shortness of breath, dry mouth, and loss of appetite compared to others. Subjects with DEPS ≥9 reported significantly higher symptom scores in all ESAS categories than subjects with DEPS <9. The area under the receiver operating characteristic curve for ESAS depression score predicting DEPS ≥9 was 0.840 (P < .001). If the ESAS depression score was 0, there was an 89% probability of the DEPS being <9, and if the ESAS depression score was ≥4, there was an 89% probability of the DEPS being ≥9. The relation between ESAS depression score and DEPS was independent of subjects’ characteristics and other ESAS items. Conclusions: Subjects with chronic respiratory insufficiency suffer from a high symptom burden due to their advanced disease. The severity of symptoms increases with depression and 4 or more points in the depression question of ESAS should lead to a closer diagnostic evaluation of depression. Symptom-centered palliative care including psychosocial aspects should be early integrated into the treatment of respiratory insufficiency.

Objective: It is unclear how well palliative care teams are staffed at US cancer centers. Our primary objective was to compare the composition of palliative care teams between National Cancer Institute (NCI)-designated cancer centers and non-NCI-designated cancer centers in 2018. We also assessed changes in team composition between 2009 and 2018. Methods: This national survey examined the team composition in palliative care programs at all 61 NCI-designated cancer centers and in a random sample of 60 of 1252 non-NCI-designated cancer centers in 2018. Responses were compared to those from our 2009 survey. The primary outcome was the presence of an interprofessional team defined as a palliative care physician, nurse, and psychosocial member. Secondary outcomes were the size and number of individual disciplines. Results: In 2018, 52/61 (85%) of NCI-designated and 27/38 (71%) non-NCI-designated cancer centers in the primary outcome comparison responded to the survey. NCI-designated cancer centers were more likely to have interprofessional teams than non-NCI-designated cancer centers (92% vs 67%; P = .009). Non-NCI-designated cancer centers were more likely to have nurse-led teams (14.8% vs 0.0%; P = .01). The median number of disciplines did not differ between groups (NCI, 6.0; non-NCI, 5.0; P = .08). Between 2009 and 2018, NCI-designated and non-NCI-designated cancer centers saw increased proportions of centers with interprofessional teams (NCI, 64.9% vs 92.0%, P < .001; non-NCI, 40.0% vs 66.7%; P = .047). Conclusion: NCI-designated cancer centers were more likely to report having an interprofessional palliative care team than non-NCI-designated cancer centers. Growth has been limited over the past decade, particularly at non-NCI-designated cancer centers.

Background: Medical interpreters are critical mediators in communication with pediatric subjects and families to include participation in difficult conversations. Objective: The objective of this pilot study was to provide suggestions from medical interpreters to palliative care teams as to how to effectively incorporate medical interpreters into end-of-life conversations. Methods: Participants included pediatric hospital-based medical interpreters who had interpreted for at least 1 end-of-life conversation in the pediatric hospital setting. A total of 11 surveys were completed by medical interpreters. The study consisted of a written 12-item survey with a follow-up focus group to further explore survey themes. Results: The translation of cultural contexts, awareness of the mixed messages the family received from health care teams, and the emotional intensity of the interactions were depicted as the most challenging aspects of the medical interpreter’s role. Despite these challenges, 9 interpreters reported they would willingly be assigned for interpreting “bad news” conversations if given the opportunity (82%). Medical interpreters recognized their relationship with the family and their helping role for the family as meaningful aspects of interpreting even in difficult conversations. Medical interpreters shared 7 thematic suggestions for improved communication in language-discordant visits: content review, message clarity, advocacy role, cultural understanding, communication dynamics, professionalism, and emotional support. Conclusions: As experts in cultural dynamics and message transmission, the insights of medical interpreters can improve communication with families.

Background: Increasing burden of non-communicable diseases and ageing population has parallely increased the need for Palliative care. Unavailable, inaccessible, and inadequate palliative care services in our setting increased the need for volunteers. In Puducherry, palliative care programme was implemented through trained volunteers in 2015. Objectives: To explore the experiences of volunteers who provide palliative care and also to get feedback on volunteering from the patients who received care. Settings and Design: A descriptive qualitative study was carried out at two Non-Governmental Organizations (NGO) working for palliative care in and around Puducherry. Methods and Material: Participants were selected purposively to include seven volunteers and eight patients to attain information saturation. The time period of this study was between September and October 2018. Analysis Used: Manual thematic analysis was done to identify codes, which were grouped to form categories and themes. Results: Factors that facilitated participants to take up the role of volunteers were witnessing the death of family members with unmet palliative care when required and experiences in organizations working for elderly and disabled children. Improvement in patients’ condition and patient satisfaction motivated them to continue, despite lack of resources and social support. Their perception was of having become bolder and empathetic by working as palliative care volunteers. Patients reported satisfaction with the provision of drugs and other materialistic support like clothes and sweets during festivals; however, their basic and financial needs remained unmet. Conclusion: The palliative care programme or the National programme for elderly should focus on components that would improve the quality of palliative care by reducing patients’ dissatisfaction. Support in terms of provision of drugs, financial help and nutrition is necessary to improve both the patients’ and volunteers’ satisfaction in palliative care services.

Objective: To describe key stakeholders’ perspectives on specialist palliative care and its integration into the management of amyotrophic lateral sclerosis (ALS). Methods: The study conducted was a qualitative, noninterventional, descriptive study. Data were collected via individual interviews of 42 stakeholders (n = 14 patients, n = 16 family caregivers, and n = 12 health-care providers). Transcribed interviews were analyzed using inductive thematic analysis techniques. Results: Stakeholders’ general impressions of specialist palliative care were highly variable. Many expressed limited or inaccurate understandings of palliative care’s definition and purpose. Perceptions of palliative care as hospice were common. Stakeholders generally supported the integration of specialist palliative care into ALS management, and many recognized the value of early integration of palliative services in both the community and the clinical setting. Conclusion: Key stakeholders readily identified a meaningful role for specialist palliative care in ALS management. Integration of specialist palliative care into existing systems of support would be facilitated by a more comprehensive understanding of the service among patients, family caregivers, and health-care providers.

Background: Hope is a positive coping mechanism that is important at all stages of illness, more so for palliative care patients. Objective: To explore the experiences of hope of palliative care patients. Methods: A qualitative study was conducted at University of Malaya, Kuala Lumpur, Malaysia. Adult palliative care in-patients were recruited and interviewed with semi structured questions on hope. Transcripts from the interviews were thematically analyzed with qualitative data management software NVIVO. Results: 20 palliative care patients participated in the study. The themes generated from thematic analysis were (1) The notions of hope, (2) The sources and barriers of hope and (3) The contents of hope. Conclusion: Hope is an ever-present source of energy that gives people strength to carry on even in the most adverse situations. Understanding hope from the palliative care perspective may allow healthcare providers to develop strategies to better foster hope in the terminally ill.

Objective: Palliative, end-of-life care (PEOLC) providers are poorly resourced in addressing the needs of patients with mental health challenges, and the dying experiences of this cohort—particularly those with a comorbid, chronic and persistent mental illness (CPMI)—are poorly documented. We sought to explore the experiences of PEOLC providers with regard to caring for patients with mental health challenges, and gather insights into ways of improving accessibility and quality of PEOLC for these patients. Method: Twenty providers of PEOLC, from different disciplines, took part in semi structured interviews. The data were coded and analyzed using a reflexive, inductive-deductive process of thematic analysis. Results: The most prominent issues pertained to assessment of patients and differential diagnosis of CPMI, and preparedness of caregivers to deliver mental health interventions, given the isolation of palliative care from other agencies. Among the assets mentioned, informal relationships with frontline caregivers were seen as the main support structure, rather than the formal policies and procedures of the practice settings. Strategies to improve mental health care in PEOLC centered on holistic roles and interventions benefiting the entire palliative population, illustrating the participants saw little point in compartmentalizing mental illness, whether diagnosed or not. Conclusions: Continuity of care and personal advocacy can significantly improve quality of life for end-of-life patients with mental health challenges, but bureaucracy and disciplinary siloing tend to isolate these patients and their caregivers. Improved interdisciplinary connectivity and innovative, hybridized roles encompassing palliation and psychiatry are 2 strategies to address this disconnect, as well as enhanced training in core mental health care competencies for PEOLC providers.

Background: The 21st century has seen a proliferation of end-of-life documentary films and television documentaries that contribute to building a public image of hospice and palliative care. The way in which terminally ill patients are represented in these documentaries creates impressions of who is welcomed to receive end-of-life care. These documentary representations have not been previously mapped. Methods: Using quantitative content analysis, I analyzed 35 contemporary Western documentaries and studied their diversity in the representations. I focused on terminally ill patients who are given time and space in the narration to voice their views about the end-of-life process. I paid attention to such elements as gender, race and ethnicity, age, class, religion and sexuality. Results: The documentaries welcomed the representations and voices of terminally ill people. Class, religion and sexuality often had a marginal role in narration. The gender diversity of the representations was quite balanced. Regarding age, the documentaries preferred stories about working age patients for dramatic purposes, yet all age groups were represented. However, the documentaries had an identifiable racial and ethnic bias. With a few exceptions, terminally ill who had a personal voice in the narrations were white. In comparison, racial and ethnic minorities were either absent from most of the documentaries, or their role was limited to illustrations of the general story. Conclusions: End-of-life documentaries provide identifiable access to the patients’ experiences and as such they provide emotionally and personally engaging knowledge about hospice and palliative care. While these representations are people-oriented, they include racial disparities and they focus mostly on the experiences of white terminally ill patients. This bias reinforces the misleading image of hospice and palliative care as a racialized healthcare service.

Objectives: Mesothelioma is a rare, progressive cancer with a short trajectory from diagnosis to the end of life. This study explores the experiences of palliative and end of life care for patients with mesothelioma from the perspective of bereaved family caregivers. Methods: A qualitative, descriptive approach was adopted comprising face-to-face, semi-structured interviews with bereaved caregivers of patients with mesothelioma in the UK. An inductive, thematic analysis was conducted using the ‘Framework’ approach. Results: Nine bereaved caregivers participated. Four themes emerged: understanding what lies ahead; carer support; care co-ordination; managing after death: practicalities, inquests and abandonment. Caregivers need to understand what lies ahead in order to emotionally and practically prepare themselves for supporting the patient at the end of life. Information and support needs of caregivers were often distinct from those of patients, including the importance of information about the coroner's involvement. The importance of care co-ordination was emphasised, with caregivers valuing on-going relationships and a named individual taking responsibility for co-ordinating the patients care. Feelings of abandonment arose when there was no contact with healthcare professionals following the death of the patient. Conclusions: Greater opportunity for open, one-to-one communication between family caregivers and healthcare professionals is vital to enable the caregiver to prepare for what lies ahead at the end of life and prevent feelings of abandonment after the death of the patient. Improved care co-ordination and partnership working are essential for supporting both patient and caregiver at the end of life.

Objectives: With the rapidly aging population worldwide, the demand for palliative care is increasing. Palliative care publicity and education must be further developed globally, especially for the elderly. It is essential to perform targeted promotion by understanding the awareness and needs of palliative care of the elderly. This study aimed to investigate elderly people's awareness of palliative care and their own views on and needs for palliative care, which could provide a basis for the popularization of palliative care among them. Methods: A total of 20 elderly people were recruited to participate in the semi-structured, and in-depth interviews. Participants were from communities and nursing homes in Chongqing, China. The interview transcripts were coded using the method of thematic analysis. Results: Finally, 4 themes and 10 subthemes were identified, that is: unawareness of the concept of palliative care (never heard of palliative care, confusion between euthanasia and palliative care), motivations for accepting palliative care (personal perspective: less suffering; family perspective: relieving the burden), factors influencing palliative care decision (cost of palliative care, knowledge of palliative care, opinion of decision-making agents), and necessity and preferences for publicizing palliative care (eagerness to know more about palliative care, focusing on policy and charges, preference for Electronic Media Advertising). Conclusions: Palliative care publicity among the elderly is important and necessary. Findings in this study could provide some insights into how to popularize palliative care among the elderly. Considering the preference of the elderly for access to palliative care information, simultaneous publicity through TV and online channels is suggested. Since the elderly would like to choose their doctors and adult children as decision-making agents, more communication between community, health professionals and family is advocated.

Background: Palliative care encompasses supportive health care for patients at any stage of illness aimed at relieving symptoms, controlling pain, managing stress, offering respite for caregivers, and optimizing the quality of life. Objective: To explore strategies for increasing access to palliative care among individuals living in remote/rural communities, a rapid review was conducted on studies that explored the use of telehealth applications with this population. Methods: From December 2019 to February 2020, the PRISMA methodology was used to gather peer-reviewed studies published in the English language. MedLine, Google Scholar, and EBSCO were searched; no date limitations were set. Given the diversity of study methodologies and outcomes, the findings were synthesized narratively. The Cochrane Collaboration’s tool for assessing the risk of bias was also employed. Lastly, the studies were mapped to clinical guidelines for the various aspects of quality palliative care. Results: The 18 studies found, published between 2004 and 2019, were conducted in seven countries and on five continents. Aims included evaluating feasibility, efficacy, and user satisfaction. Insights draw from a combined pool of 3,313 patients and 250 providers. Most studies involved oncology patients and employed videoconferencing or a web platform/online software with videoconferencing. Three themes emerged: delivery of care, symptom management and quality of life, and patient/caregiver/provider satisfaction levels. Telehealth proved effective for patient and medication monitoring, provider and specialist appointments, and palliative care consultations. Operational benefits included clinician time saved, shorter appointment wait times, and reduced no show rates; implementation challenges also emerged. Statistical improvements in quality of life and symptom management were reported. Nearly two-thirds of the studies reported positive experiences among patients, caregivers, and providers; about half included an interprofessional team. The studies primarily focused on the structure/process and physical aspects of quality palliative care, there was a paucity of insights on the spiritual, cultural, end of life, and ethical/legal aspects of care. Two-thirds (12/18) of the studies employed a descriptive design. Risk for selection, performance, detection, and reporting biases emerged for all the studies; for example, only four of the studies included control groups and less than 20% (3/18) reported on attrition of study participants. Additional limitations include the rapid review methodology which relied heavily on the lead author’s decisions and the restriction of studies published only in the English language. Conclusion: More rigorous research is required to confirm the viability of clinical care delivery and establish best practices for quality, virtual palliative care to remote/rural areas.

Background: Mainland China is facing increasing demand for palliative care and has launched related policies after 2010. Research and publications are important for sustainable development of palliative care, and should be encouraged by policy. Objectives: This study aimed to describe the development of palliative care-related publications in Mainland China in various aspects. Design: We searched Web of Science, Scopus, PubMed, Cumulative Index of Nursing and Allied Health Literature, Ovid MEDLINE, and China National Knowledge Infrastructure for publications from Mainland China for 2010–2020, with the topic words “hospice,” “palliative care,” “end-of-life care,” or “terminal care.” The publishing year, region, impacts, journals, publication types, and topics were analyzed. Results: A total of 3682 publications were identified, 754 of them (20.5%) published in Chinese core journals or international journals. The annual publication number and impact factor rose rapidly after 2016 and dropped again in 2020. There is no specialized palliative care journal in Mainland China. The publication numbers differed significantly between East and Western China and were closely linked to the economy (R2 = 0.8120, P < .0001). The megacities Beijing and Shanghai comprised 2.6% of the total population of Mainland China but produced 22.6% of the publications. Palliative care in cancer patients was the most common topic (37.7% of the publications). Practical keywords such as “pain management” and “living will” gained popularity recently. Conclusions: Palliative care-related research and publication in Mainland China are growing in recent years. However, the early stage growth is unstable, with a conspicuous regional disparity. Policies should be designed, in an equitable manner, to encourage original research and publication of palliative care.

Background: People with life-limiting illness are increasingly having more care provided to them by informal caregivers (ICs) such as family members and friends. Although there is a substantial amount of literature surrounding informal caregiving, there is a paucity of research from a hospice palliative care angle. To address this knowledge gap, this scoping review explored the effects of/challenges to informal caregiving at the end of life in Canada. Methods: Scoping review of the literature following Arksey and O’Malley’s framework. Key healthcare and social sciences databases alongside the gray literature were searched. Relevant scholarly and gray literature sources from 2005 to 2019 were screened for inclusion criteria, and a thematic content analysis employed to summarize findings. Results: Of 2,717 initial search results, 257 distinct full text articles were obtained. Following deduplication and screening, 33 met inclusion criteria. Four major themes were identified: (1) Physical health challenges, (2) Psycho-socio-spiritual health challenges, (3) Financial issues, and (4) Health system issues. Gender of ICs was also found to be an important contributor to the differing effects of providing support. Conclusions: This review raises awareness toward ICs regarding the numerous physical, psycho-socio-spiritual, financial, and health system challenges faced during care for people with life-limiting illness. The knowledge gained will inform and advance future practice, policy, and research. Application to interventions (such as caregiver benefits) will assist to improve informal caregiving experiences and outcomes alongside quality of life. Further research is required to understand these unique experiences and the challenges of minority IC populations.

Background: Informal caregivers are a significant part of the hospice and palliative care landscape as members of the interdisciplinary care team. Despite this, little is known about the impact this responsibility has on informal caregivers’ experiences of grief and bereavement. Objective: To address this, a scoping review of the literature was conducted to explore the current state of knowledge toward grief and bereavement of informal caregivers of adult/geriatric patients in the hospice and palliative/end-of-life care realm within North America. Methods: Using Arksey and O’Malley's 5-step framework, key electronic health care and social sciences databases (eg, CINAHL, MEDLINE, ProQuest Sociological Abstracts, PsycINFO) alongside gray literature sources were searched and screened against inclusion and exclusion criteria. A thematic content analysis was used to identify key themes. Results: 29 articles met the final inclusion criteria with 3 central themes emerging: (1) mediators of grief, (2) grief experiences, and (3) types of grief. Discussion: Informal caregivers encounter unique grief and bereavement experiences: The range of psychosocial outcomes, both negative and positive, can be affected by various mediators such as caregiver burden, demographics, disease type of the patient being cared for, etc. Bereavement interventions must be designed with the mediators of grief in mind. Conclusions: Understanding the nuances of informal caregivers’ experiences with grief and bereavement will inform and advance practice, policy, and research. Practitioners/clinicians should be further educated on how to properly acknowledge the complexity of grief and bereavement for informal caregivers, specifically paying attention to mediators. Further research needs to consider the role of culture.