End-of-life care for patients with cancer: Clinical, geographical, and sociocultural differences.

OBJECTIVES: 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. METHODS: 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. RESULTS: 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. SIGNIFICANCE OF RESULTS: 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.

Death education for Palliative care: a european project for University students.

BACKGROUND: The need to spread the culture of palliative care and to train health care professionals from undergraduate courses is recognised internationally. The article presents the outcomes of a project devoted to palliative care training in university courses in four countries. AIMS: This article considered the outcomes of a course designed for university students who had the potential to work in a palliative care team. The main aim was to check the efficacy of the course and the motivation to work in palliative care settings, considering the impact of fear and representations of death. METHODS: The project presented the essential contents related to palliative care, using psychodramatic and photo-voice techniques. Longitudinal measurements were taken using a quantitative method design to detect changes among the students involved. The project involved 341 students at the first administration of the survey consisted of a protocol composed of standardized questionnaires in five countries (Austria, Israel, Italy, Poland and Romania), of whom 276 completed the pre- and post-surveys-165 of them in the experimental group and 111, in the control group. RESULTS: The experience showed that it is possible to address death-related issues seriously and competently without necessarily causing discomfort and despondency in students. The results of the changes over time in the experimental and control groups highlight how the view of death as annihilation is correlated with the fear of death and the need for avoidance of thoughts concerning dying. The main result is that competence in palliative care facilitates familiarisation with issues of death and dying, as well as the ability to work in this area, thereby enhancing interpersonal skills. CONCLUSION: The project showed that it is possible to implement death education on palliative care topics in undergraduate courses to increase motivation to work in this field.

Distance Monitoring of Advanced Cancer Patients with Impaired Cardiac and Respiratory Function Assisted at Home: A Study Protocol in Italy.

During the pandemic, telemedicine and telehealth interventions have been leading in maintaining the continuity of care independently of patients' physical location. However, the evidence available about the effectiveness of the telehealth approach for advanced cancer patients with chronic disease is limited. This interventional randomized pilot study aims to evaluate the acceptability of a daily telemonitoring of five vital parameters (heart rate, respiratory rate, blood oxygenation, blood pressure, and body temperature) using a medical device in advanced cancer patients with relevant cardiovascular and respiratory comorbidities assisted at home. The purpose of the current paper is to describe the design of the telemonitoring intervention in a home palliative and supportive care setting with the objective of optimizing the management of patients, improving both their quality of life and psychological status and the caregiver's perceived care burden. This study may improve scientific knowledge regarding the impact of telemonitoring. Moreover, this intervention could foster continuous healthcare delivery and closer communication among the physician, patient and family, enabling the physician to have an updated overview of the clinical trajectory of the disease. Finally, the study may help family caregivers to maintain their habits and professional position and to limit financial consequences.

Death education and photovoice at school: A workshop with Italian high school students.

The study shows the effects of a death education workshop with Italian high school students. Students (N = 416) from 10 high schools throughout Italy participated: 212 in the experimental group and 204 in the control group. Four weekly, two-hour workshops about the themes of death, with theoretical lessons and an experiential artistic activity of photovoice. Results show that the students in the experimental group showed significantly increased self-efficacy levels and existential anxiety levels did not increase after death education intervention. Educating youth about death could give them the skills to improve the management of death-related events and cope with negative emotions.

Home Artificial Nutrition and Energy Balance in Cancer Patients: Nutritional and Clinical Outcomes.

Malnutrition is one of the main factors determining cachexia syndrome, which negatively impacts the quality of life and survival. In cancer patients, artificial nutrition is considered as an appropriate therapy when the impossibility of an adequate oral intake worsened nutritional and clinical conditions. This study aims to verify, in a home palliative care setting for cancer patients, if home artificial nutrition (HAN) supplies a patient's energy requirement, improving nutritional and performance status. A nutritional service team performed counseling at a patient's home and assessed nutritional status (body mass index, weight loss in the past 6 months), resting energy expenditure (REE), and oral food intake; Karnofsky Performance Status (KPS); cachexia degree; and survival. From 1990 to 2021, 1063 patients started HAN. Among these patients, 101 suspended artificial nutrition for oral refeeding. Among the 962 patients continuing HAN until death, 226 patients (23.5%) survived 6 weeks or less. HAN allowed to achieve a positive energy balance in 736 patients who survived more than 6 weeks, improving body weight and KPS when evaluated after 1 month of HAN. Advanced cancer and cachexia degree at the entry of the study negatively affected the positive impact of HAN.

Identifying the prevalence of unmet supportive care needs among family caregivers of cancer patients: an Italian investigation on home palliative care setting.

PURPOSE: Family caregivers (FCs) are crucial resources in caring for cancer patients at home. The aim of this investigation was (1) to measure the prevalence of unmet needs reported by FCs of cancer patients in home palliative care, and (2) to investigate whether their needs change as their socio-demographic characteristics and the patients' functional abilities change. METHODS: FCs completed a battery of self-report questionnaires, including the Cancer Caregiving Tasks, Consequences, and Needs (CaTCoN). RESULTS: Data were collected from 251 FCs (74 men and 177 women, mean age 58.5 ± 14.2 years). Most of the participants experienced a substantial caregiving workload related to practical help (89.8%), provided some or a lot of personal care (73.1%), and psychological support (67.7%) to patients. More than half of the FCs reported that the patient's disease caused them negative physical effects (62.7%). Emotional, psychosocial, and psychological needs were referred. Some FCs reported that the patient's disease caused them a lot of stress (57.3%) and that they did not have enough time for friends/acquaintances (69.5%) and family (55.7%). The need to see a psychologist also emerged (44.0%). Age, caregiving duration, and patients' functional status correlated with FCs' unmet needs. Women reported more negative social, physical, and psychological consequences and a more frequent need to talk to a psychologist. CONCLUSION: The analysis demonstrated that cancer caregiving is burdensome. The results can guide the development and implementation of tailored programs or support policies so that FCs can provide appropriate care to patients while preserving their own well-being.

Tackling the Pandemic a Year Later: Burnout Among Home Palliative Care Clinicians.

CONTEXT: The COVID-19 pandemic strongly challenged healthcare workers, disrupting their work routine and impacting on their professional life. A previous investigation explored levels of burnout and psychological morbidity among palliative care professionals (PCPs) during COVID-19 first wave. OBJECTIVE: To update data about burnout and psychological morbidity among PCPs after a year of COVID-19 pandemic. METHODS: The same questionnaires on burnout (Maslach Burnout Inventory, MBI) and psychological morbidity (General Health Questionnaire 12 items, GHQ-12) were administered a year after. Differences in MBI and GHQ-12 scores obtained in the two studies (COVID2020 and COVID2021), as well as distributions of PCPs showing burnout symptoms and psychological morbidity were analyzed and compared. We also explored the association between the three dimensions of burnout and socio-demographic and professional characteristics. RESULTS: The sample consisted of 145 PCPs (59% physicians and 41% nurses). Response rate (70.4%) was quite similar to the previous study (73.2%). No differences were observed in the frequency of burnout between COVID2021 and COVID2020; the PCPs in COVID2021 reported marginally higher level of EE (P = .049) and this result is confirmed in physicians (P = .010) while no difference was observed in nurses (P = .326). In addition, the percentage of cases showing psychological morbidity significantly decreased. CONCLUSION: Our findings show stable levels of burnout and decreasing levels of psychological morbidity among PCPs one year after the onset of the COVID-19 pandemic. However, more research is needed to detail the significance of emotional exhaustion dimension, a variable influenced by the survey.

Can Naloxegol Therapy Improve Quality of Life in Patients with Advanced Cancer?

This observational study aims to evaluate the efficacy of naloxegol therapy in resolving opioid-induced constipation (OIC) and in improving the quality of life in a home palliative care cancer setting. Advanced cancer patients with OIC (Rome IV criteria) not relieved by laxatives started a naloxegol therapy 25 mg/day for 4 weeks. Quality of life was evaluated by Patient Assessment of Constipation Quality-of-Life (PAC-QoL) at day 0 and day 28; background pain by Numerical Rating Scale, number of weekly spontaneous bowel movements and Bowel Function Index (BFI) were evaluated at day 0 and every week. Seventy-eight patients who completed the 4-week study improved all four PAC-QoL dimensions (physical and psychological discomfort, worries/concerns and satisfaction level). Weekly spontaneous bowel movements increased and BFI improved. Background pain reduced after seven days and remained lower during the following weeks. Seventy-two patients dropped out the study before day 28 with a reduced survival compared to patients completing the study. Even in these patients, an improvement of bowel function was observed after two weeks. Naloxegol was effective in improving the quality of life, resolving OIC and reducing overall pain in patients with advanced cancer.

Virtual Reality in Home Palliative Care: Brief Report on the Effect on Cancer-Related Symptomatology.

Virtual reality (VR) has been used as a complementary therapy for managing psychological and physical symptoms in cancer patients. In palliative care, the evidence about the use of VR is still inadequate. This study aims to assess the effect of an immersive VR-based intervention conducted at home on anxiety, depression, and pain over 4days and to evaluate the short-term effect of VR sessions on cancer-related symptomatology. Participants were advanced cancer patients assisted at home who were provided with a VR headset for 4days. On days one and four, anxiety and depression were measured by the Hospital Anxiety and Depression Scale (HADS) and pain by the Brief Pain Inventory (BPI). Before and after each VR session, symptoms were collected by the Edmonton Symptom Assessment Scale (ESAS). Participants wore a smart wristband measuring physiological signals associated with pain, anxiety, and depression. Fourteen patients (mean age 47.2±14.2years) were recruited. Anxiety, depression (HADS), and pain (BPI) did not change significantly between days one and four. However, the ESAS items related to pain, depression, anxiety, well-being, and shortness of breath collected immediately after the VR sessions showed a significant improvement (p<0.01). A progressive reduction in electrodermal activity has been observed comparing the recordings before, during, and after the VR sessions, although these changes were not statistically significant. This brief research report supports the idea that VR could represent a suitable complementary tool for psychological treatment in advanced cancer patients assisted at home.

Home palliative care professionals perception of challenges during the Covid-19 outbreak: A qualitative study.

BACKGROUND: Home palliative care services have played an essential role during the first wave of the SARS-CoV-2 outbreak by providing symptom control, drug procurement, and psychological support for frail patients and their families unable to leave their homes. AIM: To understand how home palliative care professionals were affected by the outbreak, describing changes and challenges in their daily work as well as their reactions to the Covid-19 pandemic in Italy. DESIGN: Qualitative study conducted using telephone semi-structured interviews, with thematic analysis. SETTING/PARTICIPANTS: Thirty home care professionals working for an Italian non-profit organization which provides home palliative care for cancer patients and their families. RESULTS: Three main themes were identified. The first theme showed both patient-related and practice-related challenges participants faced in their daily work, requiring the implementation of different communication methods and patient and family education on risk prevention. The second theme showed the perception of increased responsibility and being the only landmark for family played a decisive role in participants' positive attitude. The third theme highlighted the participants' perception of the critical role of a home care setting in this emergency situation. CONCLUSIONS: The first wave of the Covid-19 pandemic brought many challenges and stressors for home palliative care professionals. On the other side, they reported a satisfaction with their critical role in carrying out their work with patients at risk.

Students' Confidence and Interest in Palliative and Bereavement Care: A European Study.

As part of a European Erasmus Plus project entitled Death Education for Palliative Psychology, this study assessed the ways in which Master's Degree students in psychology and the creative arts therapies self-rated their confidence and interest in death education and palliative and bereavement care. In five countries (Austria, Israel, Italy, Poland, Romania), 344 students completed an online questionnaire, and 37 students were interviewed to better understand their views, interest, and confidence. The results revealed some significant differences between countries, and showed that older respondents with previous experience as formal caregivers for end-of-life clients showed greater interest in obtaining practical clinical competence in these fields. A mediation analysis indicated that students' previous care experiences and past loss experiences were related to students' current interest in death education and palliative and bereavement care through the mediation of their sense of confidence in this field. The qualitative findings identified five shared themes: life and death, learning about death, the psychological burden, personal experience and robust training, and four key training needs. Overall, students' interest in studying and working with terminal illness and death are rooted in internal resources, a preliminary sense of confidence, but also external requirements.

Let's Start With the End: Bibliodrama in an Italian Death Education Course on Managing Fear of Death, Fantasy-Proneness, and Alexithymia With a Mixed-Method Analysis.

This article presents the results of an experience of death education (DE) course with bibliodrama in Italian high schools, which focused on emotions and existential themes. The research analyzed the inability to recognize or describe one's own emotions (alexithymia), fantasy-proneness, and attitudes toward death in two different groups of students: one who took a course on DE (with 113 students) and another who did not participate in it (with 114 students). The use of a mixed method allowed this study to explore the quantitative results that the students indicated in the questionnaire and the qualitative open answers to the final question about how they had profited from this DE course. The results showed that the course had a positive effect, as the DE group significantly decreased alexithymia and negative attitudes toward death, particularly in fear and avoidance of death, making their representation of death less traumatic.

Caring Advanced Cancer Patients at Home During COVID-19 Outbreak: Burnout and Psychological Morbidity Among Palliative Care Professionals in Italy.

CONTEXT: Providing palliative care (PC) at home for patients with advanced cancer has become essential during the COVID-19 emergency. Nevertheless, the home PC professionals (PCPs) faced a challenging situation because of increased number of discharged patients, reduced availability of health-care facilities, and physical/relational barriers between them and patients. OBJECTIVES: This study aimed to investigate the impact of COVID-19 pandemic on burnout and psychological morbidity among home PCPs in Italy. METHODS: One hundred and ninety-eight PC physicians and nurses working in home assistance in Italy were invited to participate. The results obtained by the investigation conducted during the COVID-19 emergency (COVID2020) were compared with data collected in 2016 in the same setting (BURNOUT2016). The questionnaires (socio-demographics, Maslach Burnout Inventory and General Health Questionnaire-12) were the same for both the surveys. The PCPs participating in COVID2020 survey (n = 145) were mostly the same (70%) who participated in the BURNOUT2016 study (n = 179). RESULTS: One hundred and forty-five PCPs participated in the study (response rate 73.2%). During the COVID-19 emergency, home PCPs presented a lower burnout frequency (P < .001) and higher level of personal accomplishment than in 2016 (P = .047). Conversely, the risk for psychological morbidity was significantly higher during the pandemic (P < .001). CONCLUSIONS: In the age of COVID-19, the awareness of being at the forefront of containing the pandemic along with the sense of responsibility toward their high-risk patients may arouse PCPs' psychological distress, but, on the other hand, this condition may improve their sense of professional satisfaction and personal accomplishment.

Rethinking palliative care in a public health context: addressing the needs of persons with non-communicable chronic diseases.

Non-communicable chronic diseases (NCCDs) are the main cause of morbidity and mortality globally. Demographic aging has resulted in older populations with more complex healthcare needs. This necessitates a multilevel rethinking of healthcare policies, health education and community support systems with digitalization of technologies playing a central role. The European Innovation Partnership on Active and Healthy Aging (A3) working group focuses on well-being for older adults, with an emphasis on quality of life and healthy aging. A subgroup of A3, including multidisciplinary stakeholders in health care across Europe, focuses on the palliative care (PC) model as a paradigm to be modified to meet the needs of older persons with NCCDs. This development paper delineates the key parameters we identified as critical in creating a public health model of PC directed to the needs of persons with NCCDs. This paradigm shift should affect horizontal components of public health models. Furthermore, our model includes vertical components often neglected, such as nutrition, resilience, well-being and leisure activities. The main enablers identified are information and communication technologies, education and training programs, communities of compassion, twinning activities, promoting research and increasing awareness amongst policymakers. We also identified key 'bottlenecks': inequity of access, insufficient research, inadequate development of advance care planning and a lack of co-creation of relevant technologies and shared decision-making. Rethinking PC within a public health context must focus on developing policies, training and technologies to enhance person-centered quality life for those with NCCD, while ensuring that they and those important to them experience death with dignity.

Burnout in Home Palliative Care: What Is the Role of Coping Strategies?

OBJECTIVE: The study examines psychophysical distress of health-care professionals providing home-based palliative care. The aim is to investigate potential correlations between dimensions of burnout and different coping strategies. METHODS: The present study is an observational cross-sectional investigation. The study involved all the home palliative care teams of an Italian nonprofit organization. Of a total of 275 practitioners working for the organization, 207 (75%) decided to participate in the study and complete questionnaires. Questionnaires employed were Maslach Burnout Inventory, General Health Questionnaire 12, Psychophysiological Questionnaire of CBA 2.0, and Coping Orientation to Problems Experienced. Professionals were physicians (50%), nurses (36%), and psychologists (14%). There were no exclusion criteria. Data were processed by SPSS 23 and analyses employed were Spearman ρ, Mann-Whitney U test, and 1-way analysis of variance on ranks. RESULTS: Among participants, a low number of professionals were emotionally exhausted (11%) or not fulfilled at work (20%), whereas most of them complained of depersonalization symptoms (67%). Emotional exhaustion and depersonalization were found to be associated with avoidance coping strategies, whereas problem-solving and positive attitude were negatively associated with emotional exhaustion and positively with personal accomplishment. Moreover, using avoidance strategies was related to a worse psychological and physical condition. CONCLUSIONS: Findings suggest the need to provide professionals training programs about coping and communication skills tailored to fit the professionals' needs according to their work experience in palliative care and aimed at improving the approach to patients and relatives.

Associations between caregiving worries and psychophysical well-being. An investigation on home-cared cancer patients family caregivers.

PURPOSE: Caregiving to a family member with cancer might have health implications. However, limited research has investigated the psychophysical health of home-cared cancer patients family caregivers. In a previous study, we have found that a prolonged worry in daily life is a crucial variable compared to caregivers' psychophysical symptomatology. This investigation was designed to further examine the well-being of family caregivers, explore the domains of worry, and assess to what extent "content-dependent" worry could be associated with the caregivers' health METHODS: The sample consisted of 100 family caregivers of oncological patients assisted at home. Participants completed a battery of self-report questionnaires (Penn State Worry Questionnaire, Worry Domain Questionnaire, Hospital Anxiety and Depression Scale, Family Strain Questionnaire Short Form, and Psychophysiological Questionnaire of the Battery CBA 2.0). RESULTS: The level of worry was medium-high among participants, and caregivers worry more about their occupation and future. Depression, anxiety, and somatic symptomatology levels resulted mild, while strain level resulted high. Statistical analyses confirm the conclusions of the previous study, revealing a significant positive correlation between worry levels and caregivers' psychophysical health. Innovatively, it has been highlighted that who has higher scores of content-dependent worry shows also higher levels of strain, somatic symptoms, anxiety, and depression CONCLUSIONS: Not only trait-worry ("content-free" measure) but also content-dependent worry is associated with strain and negative health outcomes. People may worry about different targets, and it might be useful to further investigate what are the specific worriers of family caregivers in order to promote their physical and emotional well-being.

Worry as a risk factor for mental and somatic diseases. A research on home-cared cancer patients family caregivers.

OBJECTIVE: Cancer patients family caregivers are exposed to several physical and emotional distress. Many recent reviews have provided strong evidence linking negative affective states and dispositions to disease. Moreover, several recent studies suggested that perseverative cognition, as manifested in worry, plays a role in nearly all anxiety disorders and is a crucial factor in somatic health as well. In this study, we tested a group of family caregivers since we wanted to find out whether worry might act directly on psychological and somatic diseases. METHODS: The sample consists of 107 family caregivers. Participants completed a battery of self-report questionnaires including the Caregiver Burden Inventory, the Penn State Worry Questionnaire, the Psychophysiological Questionnaire and the Beck Depression Inventory. They underwent tests at the moment of oncological home-care request. RESULTS: The study has revealed that there is a significant positive correlation between worry measures and mental and physical health of the participants. In fact, the tendency to perseverative cognition resulted as a powerful and solid predictor of physical symptomatology (R = 0.5, beta = 0.67, p < 0.001) and depression level (R = 0.46, beta = 0.52, p < 0.000001). CONCLUSIONS: Worry plays an important role in psychological and physical health and it is a counterproductive attempt at constructive mental problem solving. These results have great practical and operative value. Interventions improving caregiver's ability to cope with stress situations are likely to result in more positive benefits for cancer patients: in fact, if we promote the caregiver's physical and emotional well-being, he or she can provide the best care possible to the patient.