AIM: This survey investigated the availability of training programs in pediatric palliative care (PPC) for Italian postgraduates specializing in pediatric medicine.
METHODS: Two questionnaires were developed: (i) a questionnaire addressed to the Directors of Italian postgraduate pediatric medicine programs (n = 37); and (ii) a survey to the postgraduate students in pediatric medicine at the University Hospitals of Padua and Udine (n = 127).
RESULTS: 14 directors participated (response rate: 37.8%). In 85.7% of cases (n = 12), lectures on PPC were offered, for a supposed maximum of 90 minutes/year. 116 students responded (response rate: 91%): they stated that, approximately 40 min/year of training on PPC was provided. In total, 37% of responders stated they attended a PPC Service during their training. The majority of responders (68.1%, n = 79) did not feel ready to care for a pediatric patient with life-limiting disease.
CONCLUSIONS: Although PPC is well-recognized as part of a pediatrician's training, it receives poor attention.
BACKGROUND: Much effort has been made to explore how patients with advanced chronic illness and their families experience care when they attend the Emergency Department, and many studies have investigated how healthcare professionals perceive Palliative Care provision in the Emergency Department. Various models exist, but nonetheless incorporating palliative care into the Emergency Department remains challenging. Considering both healthcare professionals' and users' perspective on problems encountered in delivering and receiving appropriate palliative care within this context may provide important insight into meaningful targets for improvements in quality of care. Accordingly, this study aims at exploring issues in delivering palliative care in the Emergency Department from the perspective of both providers and users, as part of a larger project on the development and implementation of a quality improvement program in Italian Emergency Departments.
METHODS: A qualitative study involving focus group interviews with Emergency Department professionals and semi-structured interviews with patients with palliative care needs in the Emergency Department and their relatives was conducted. Both datasets were analyzed using Thematic Analysis.
RESULTS: Twenty-one healthcare professionals, 6 patients and 5 relatives participated in this study. Five themes were identified: 1) shared priorities in Emergency Department among healthcare professionals and patients, 2) the information provided by healthcare professionals and that desired by relatives, 3) perception of environment and time, 4) limitations and barriers to the continuity of care, and 5) the contrasting interpretations of giving and receiving palliative care.
CONCLUSIONS: This study provides insights into targets for changes in Italian Emergency Departments. Room for improvement relates to training for healthcare professionals on palliative care, the development of a shared care pathway for patients with palliative care needs, and the optimization of Emergency Department environment. These targets will be the basis for the development of a quality improvement program in Italian Emergency Departments.
OBJECTIVE: To examine factors associated with perceived quality of communication with physicians by relatives of dying residents of long-term care facilities (LTCFs).
DESIGN: A cross-sectional retrospective study in a representative sample of LTCFs conducted in 2015. In each LTCF, deaths of residents during the 3 months before the researcher's visit were reported. Structured questionnaires were sent to the identified relatives of deceased residents.
SETTINGS AND PARTICIPANTS: A total of 736 relatives of deceased residents in 210 LTCFs (in Belgium, Finland, Italy, the Netherlands, and Poland).
METHODS: The Family Perception of Physician-Family Communication scale (FPPFC) was used to assess the quality of end-of-life (EOL) communication with physicians as perceived by relatives. We applied multilevel linear regression models to find factors associated with the FPPFC score.
RESULTS: The quality of EOL communication with physicians was perceived by relatives as higher when the relative spent more than 14 hours with the resident in the last week of the resident's life (b = 0.205; P = .044), and when the treating physician visited the resident at least 3 times in the last week of the resident's life (b = 0.286; P = .002) or provided the resident with palliative care (b = 0.223; P = .003). Relatives with higher emotional burden perceived the quality of EOL communication with physicians as lower (b = -0.060; P < .001). These results had been adjusted to countries and LTCF types with physicians employed on-site or off-site of the facility.
CONCLUSION: The quality of EOL communication with physicians, as perceived by relatives of dying LTCF residents, is associated with the number of physician visits and amount of time spent by the relative with the resident in the last week of the resident's life, and relatives' emotional burden.
IMPLICATIONS: LTCF managers should organize care for dying residents in a way that enables frequent interactions between physicians and relatives, and emotional support to relatives to improve their satisfaction with EOL communication.
BACKGROUND: By 2030, 30% of the European population will be aged 60 or over and those aged 80 and above will be the fastest growing cohort. An increasing number of people will die at an advanced age with multiple chronic diseases. In Europe at present, between 12 and 38% of the oldest people die in a long-term care facility. The lack of nationally representative empirical data, either demographic or clinical, about people who die in long-term care facilities makes appropriate policy responses more difficult. Additionally, there is a lack of comparable cross-country data; the opportunity to compare and contrast data internationally would allow for a better understanding of both common issues and country-specific challenges and could help generate hypotheses about different options regarding policy, health care organization and provision. The objectives of this study are to describe the demographic, facility stay and clinical characteristics of residents dying in long-term care facilities and the differences between countries.
METHODS: Epidemiological study (2015) in a proportionally stratified random sample of 322 facilities in Belgium, Finland, Italy, the Netherlands, Poland and England. The final sample included 1384 deceased residents. The sampled facilities received a letter introducing the project and asking for voluntary participation. Facility manager, nursing staff member and treating physician completed structured questionnaires for all deaths in the preceding 3 months.
RESULTS: Of 1384 residents the average age at death ranged from 81 (Poland) to 87 (Belgium, England) (p < 0.001) and length of stay from 6 months (Poland, Italy) to 2 years (Belgium) (p < 0.05); 47% (the Netherlands) to 74% (Italy) had more than two morbidities and 60% (England) to 83% (Finland) dementia, with a significant difference between countries (p < 0.001). Italy and Poland had the highest percentages with poor functional and cognitive status 1 month before death (BANS-S score of 21.8 and 21.9 respectively). Clinical complications occurred often during the final month (51.9% England, 66.4% Finland and Poland).
CONCLUSIONS: The population dying in long-term care facilities is complex, displaying multiple diseases with cognitive and functional impairment and high levels of dementia. We recommend future policy should include integration of high-quality palliative and dementia care.
Context: To provide high-quality palliative care to nursing home residents, staff need to understand the basic principles of palliative care.
Objectives: to evaluate the extent of agreement with the basic principles of palliative care of nurses and care assistants working in nursing homes in five European countries and to identify correlates.
Methods: This is a cross-sectional study in 214 homes in Belgium, England, Italy, the Netherlands, and Poland. Agreement with basic principles of palliative care was measured with the Rotterdam MOVE2PC. We calculated percentages and odds ratios of agreement and an overall score between 0 (no agreement) and 5 (total agreement).
Results: Most staff in all countries agreed that palliative care involves more than pain treatment (58% Poland to 82% Belgium) and includes spiritual care (62% Italy to 76% Belgium) and care for family or relatives (56% Italy to 92% Belgium). Between 51% (the Netherlands) and 64% (Belgium) correctly disagreed that palliative care should start in the last week of life and 24% (Belgium) to 53% (Poland) agreed that palliative care and intensive life-prolonging treatment can be combined. The overall agreement score ranged between 1.82 (Italy) and 3.36 (England). Older staff (0.26; 95% confidence interval [CI]: 0.09–0.43, P = 0.003), nurses (0.59; 95% CI: 0.43–0.75, P < 0.001), and staff who had undertaken palliative care training scored higher (0.21; 95% CI: 0.08–0.34, P = 0.002).
Conclusions: The level of agreement of nursing home staff with basic principles of palliative care was only moderate and differed between countries. Efforts to improve the understanding of basic palliative care are needed.
The removal of organs and tissues is characterized by a high level of stress and can be very traumatic for the nursing team. This study was informed by a grounded theory approach and was based on data drawn from two focus groups with 15 nurses. Main themes centered on factors that modulate the level of stress (first experiences, children donors, doubts about death, organizational factors), and coping strategies (including nurses’ attitudes toward organ donation and training needs). There is a need to implement training for the stress management of the operating nurses and to provide supportive interventions.
OBJECTIVE: To examine how relatives evaluate the quality of communication with the treating physician of a dying resident in long-term care facilities (LTCFs) and to assess its differences between countries.
DESIGN: A cross-sectional retrospective study in a representative sample of LTCFs conducted in 2015. Relatives of residents who died during the previous 3 months were sent a questionnaire.
SETTINGS AND PARTICIPANTS: 761 relatives of deceased residents in 241 LTCFs in Belgium, England, Finland, Italy, the Netherlands, and Poland.
METHODS: The Family Perception of Physician-Family Communication (FPPFC) scale (ratings from 0 to 3, where 3 means the highest quality) was used to retrospectively assess how the quality of end-of-life communication with treating physicians was perceived by relatives. We applied multilevel linear and logistic regression models to assess differences between countries and LTCF types.
RESULTS: The FPPFC score was the lowest in Finland (1.4 ± 0.8) and the highest in Italy (2.2 ± 0.7). In LTCFs served by general practitioners, the FPPFC score differed between countries, but did not in LTCFs with on-site physicians. Most relatives reported that they were well informed about a resident's general condition (from 50.8% in Finland to 90.6% in Italy) and felt listened to (from 53.1% in Finland to 84.9% in Italy) and understood by the physician (from 56.7% in Finland to 85.8% in Italy). In most countries, relatives assessed the worst communication as being about the resident's wishes for medical treatment at the end of life, with the lowest rate of satisfied relatives in Finland (37.6%).
CONCLUSION: The relatives' perception of the quality of end-of-life communication with physicians differs between countries. However, in all countries, physicians' communication needs to be improved, especially regarding resident's wishes for medical care at the end of life.
IMPLICATIONS: Training in end-of-life communication to physicians providing care for LTCF residents is recommended.
The present article reviews the state of public debate and legal provisions concerning end-of-life decision-making in Italy and offers an evaluation of the moral and legal issues involved. The article further examines the content of a recent law concerning informed consent and advance treatment directives, the main court pronouncements that formed the basis for the law, and developments in the public debate and important jurisprudential acts subsequent to its approval. The moral and legal grounds for a positive evaluation of this law, which attests that the patient may withhold or withdraw from life-prolonging treatment, will be offered with reference to liberal approaches and particularly to the frameworks of care and virtue ethics; but reasons will also be offered in order to consider not only the latter but also broader range of end-of-life treatment decisions as morally apt options. In this light, we argue in favour of a further development of the Italian legislation to encompass forms of assisted suicide and active euthanasia.
BACKGROUND: While the need for palliative care in long-term care facilities is growing, it is unknown whether palliative care in this setting is sufficiently developed.
AIM: To describe and compare in six European countries palliative care provision in long-term care facilities and to assess associations between patient, facility and advance care planning factors and receipt and timing of palliative care.
DESIGN: Cross-sectional after-death survey regarding care provided to long-term care residents in Belgium, England, Finland, Italy, the Netherlands and Poland. Generalized estimating equations were used for analyses.
SETTING/PARTICIPANTS: Nurses or care assistants who are most involved in care for the resident.
RESULTS: We included 1298 residents in 300 facilities, of whom a majority received palliative care in most countries (England: 72.6%-Belgium: 77.9%), except in Poland (14.0%) and Italy (32.1%). Palliative care typically started within 2 weeks before death and was often provided by the treating physician (England: 75%-the Netherlands: 98.8%). A palliative care specialist was frequently involved in Belgium and Poland (57.1% and 86.7%). Residents with cancer, dementia or a contact person in their record more often received palliative care, and it started earlier for residents with whom the nurse had spoken about treatments or the preferred course of care at the end of life.
CONCLUSION: The late initiation of palliative care (especially when advance care planning is lacking) and palliative care for residents without cancer, dementia or closely involved relatives deserve attention in all countries. Diversity in palliative care organization might be related to different levels of its development.
OBJECTIVE: Ensure access to perinatal palliative care (PnPC) to all eligible fetuses/infants/parents.
DESIGN: During 12 meetings in 2016, a multidisciplinary work-group (WG) performed literature review (Grading of Recommendations, Assessment, Development and Evaluation (GRADE) method was applied), including the ethical and legal references, in order to propose shared care pathway.
SETTING: Maternal-Infant Department of Padua's University Hospital.
PATIENTS: PnPC eligible population has been divided into three main groups: extremely preterm newborns (first group), newborns with prenatal/postnatal diagnosis of life-limiting and/or life-threatening disease and poor prognosis (second group) and newborns for whom a shift to PnPC is appropriate after the initial intensive care (third group).
INTERVENTIONS: The multidisciplinary WG has shared care pathway for these three groups and defined roles and responsibilities.
MAIN OUTCOME MEASURES: Prenatal and postnatal management, symptom's treatment, end-of-life care.
RESULTS: The best care setting and the best practice for PnPC have been defined, as well as the indications for family support, corpse management and postmortem counselling, as well suggestion for conflicts' mediation.
CONCLUSIONS: PnPC represents an emerging field within the paediatric palliative care and calls for the development of dedicated shared pathways, in order to ensure accessibility and quality of care to this specific population of newborns.
Dans le deuil périnatal, l’absence de reconnaissance juridique et sociale de l’existence de l’enfant peuvent être des facteurs de risque pour le travail de deuil des parents. La comparaison entre les lois italiennes et françaises montre le rôle joué par les racines laïques et chrétiennes dans la législation. Malgré les différences, dans les deux pays la reconnaissance de l’existence de l’enfant est encore faible. On n’est pas encore en mesure de pourvoir aux besoins des parents, pour lesquels, même sans l’inscription à l’état civil, l’enfant a vraiment existé.
The article looks into the case involving Fabiano Antoniani, who, following a major road accident, was left tetraplegic. Marco Cappato drove him to a Swiss clinic where Mr. Antoniani took his own life by self-administration of lethal pentobarbital sodium. Cappato was put on trial, but the Italian Constitutional Court urged the Parliament to decriminalise assisted suicide in extremely serious cases. From a comparison with other European countries, approaches range from restrictive (banning both active euthanasia and assisted suicide), to entirely permissive. An intermediate approach only entails a ban on active euthanasia. It would be desirable to uniformise the diverse national statutes on a European level, which would make it possible for everyone to receive assistance towards ending their suffering, with limitations to incurable cases to be medically verified, and at the end of a path designed to ensure that patient freedom of choice is upheld at all time.
The prevalence of children on long-term ventilation (LTV) at home has increased in many countries. In Italy, there are 4.3/100,000 population younger than 18 years. Pediatric palliative care (PPC) network provides high-level care for these patients. In December 2003, in the northeast region of Italy, the regional authority promoted and developed a regional network for PPC, a regional network dedicated to the management of pediatric patients with life-limiting and life-threatening diseases. Characterization of LTV children population and description of care offered to them by a regional PPC network, based on the experience of the Veneto region were collected in a regional database. The regional database and evaluation of families' satisfaction, by means of a questionnaire, were longitudinally analyzed. We studied 56 children on LTV. The main involved diseases were neuromuscular diseases and myopathy. All patients had major comorbidities. Mean age was 4.5 years. The median age of starting ventilation was 3.9 years. The initial type of ventilation was invasive mechanical ventilation in 31 patients and noninvasive ventilation in 25 of them. The overall average frequency of hospitalizations for acute episodes was 0.7 admissions per year and the median duration of staying was 6 days. The median duration of staying in the intensive care unit (ICU) was significantly reduced after the opening of a residential solution (the pediatric hospice) (5 vs. 39 days). PPC network can offer global care to children on LTV. The availability of a residential structure into the PPC network seems to reduce the number and duration of hospital stays, especially in ICU, of this population, with likely cost savings. Further studies are necessary to confirm this hypothesis.
Depuis le 31 janvier 2018, l’Italie fait partie des États qui disposent d’une loi permettant à tout individu majeur d’exprimer ses volontés en matière de traitement, en prévision des jours où il pourrait être hors d’état de le faire. Parallèlement, en France, deux ans après son entrée en vigueur, la loi Claeys-Leonetti est de plus en plus questionnée. Certains demandent une nouvelle loi sur la fin de vie. Un détour par l’Italie, centré sur le contexte d’émergence de sa récente loi, peut se révéler éclairant. Si les similitudes entre les deux textes sont nombreuses, les différences entre les pratiques et les cadres de pensée peuvent suggérer des pistes de réflexion afin de contribuer à améliorer les conditions de la fin de vie.
Supportive and palliative care at the end of life (EOL) is a core component of health systems. Providing care at the EOL may require the interaction of several care providers working in different settings including nursing homes, home care, hospices, and hospitals. This work aims to (a) provide evidence on the performance of EOL care for cancer patients across healthcare organizations, with a focus on the place of care, aggressive treatments, opioids, and the place of death and (b) analyze factors associated with dying in hospital. A population-based retrospective study was performed using administrative data from Tuscany region (Italy). Thirteen thousand sixty-six cancer patients who died in 2016 were considered. There is a marked variability in EOL care within regional areas, with the multilevel logistic regression highlighting a greater likelihood of dying in hospital for patients who were admitted to intensive care units or previously hospitalized. There is a lower probability of dying in acute care setting for patients assisted in hospices and in both hospital and hospices/home care and for patients treated with opioids. This intraregional variation highlights the need to improve EOL planning and rethink the delivery of supportive/palliative care. Further investigations on the preferences of patients may lead to more understanding.
BACKGROUND: Dependence is a common life experience and innate condition for human beings due to their bodily and relational essence, but in contemporary society, it has become a stressful condition. Care dependence is central to nursing, and patients with advanced cancer are often dependent on care. Understanding nurses' perceptions of care dependence can contribute to awareness of the impact it has on nurses.
OBJECTIVE: The aim of this study was to explore palliative care nurses' experiences and perceptions regarding patient dependence.
METHODS: Sixteen nurses taking care of dependent patients in a palliative care center in Rome were interviewed. Giorgi's descriptive phenomenological method was used.
RESULTS: Nurses caring for dependent patients transcend the boundaries of dependence. Care dependence is an experience of powerlessness and regression. A patient's life in dependence is precarious, as they have to overcome the daily limits of life. Taking care of dependent patients requires nurses to manage the unmanageable and to know and to embrace change from within in order to build positive relations of personal closeness and reciprocal self-giving.
CONCLUSIONS: Nurses should be aware that self-transcendence and the consequent positive relations could make the difference in the experience of care dependence and promote personal growth for both patient and nurse. Positive and transcending relationships can transform care dependence into the opportunity to find meaning and purpose in life.
IMPLICATIONS FOR PRACTICE: The study highlights what nurses feel in caring for dependent patients. Understanding nurses' perceptions is important to delineate a proper caring for dependent patients.
This article analyses new legislation regulating advance directives in Italy. On 14 December 2017, the Italian Senate passed a Bill regulating end-of-life decisions by codifying patients' rights to self-determination. It is the first law governing advance directives in the Italian legal system. This article studies and critically examines the two types of advance directives through an Italian legal perspective - living wills and nominations of a surrogate. It also applies a legal comparison approach. In its conclusions, this article advances some policy suggestions.
BACKGROUND: Newer models of palliative and supportive cancer care view the person as an active agent in managing physical and psychosocial challenges. Therefore, personal efficacy is an integral part of this model. Due to the lack of instruments in Italian to assess coping self-efficacy, the present study included the translation and validation of the Italian version of the Cancer Behavior Inventory-Brief (CBI-B/I) and an initial analysis of the utility of self-efficacy for coping in an Italian sample of palliative care patients.
METHODS: 216 advanced cancer patients who attended palliative care clinics were enrolled. The CBI-B/I was administered along with the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30), the Mini Mental Adjustment to Cancer Scale (Mini-MAC), the Cancer Concerns Checklist (CCL), and the Hospital Anxiety and Depression Scale (HADS). The Eastern Cooperative Oncology Group Performance Status (ECOG-PS) ratings of functional capacity were completed by physicians.
RESULTS: Factor analysis confirmed that the structure of the CBI-B/I was consistent with the English version. Internal consistency reliability and significant correlations with the EORTC QLQ-C30, Mini-MAC, and HADS supported the concurrent validity of the CBI-B/I. Differences in CBI-B/I scores for high versus low levels of the CCL and ECOG-PS supported the clinical utility of the CBI-B/I.
CONCLUSIONS: The CBI-B/I has strong psychometric properties and represents an important addition to newer model of palliative and supportive care. In order to improve clinical practice, the CBI-B/I could be useful in identifying specific self-efficacy goals for coping in structured psychosocial interventions.
A consensus document on early palliative care was produced by a committed Working Group of the Italian Society of Medical Oncology and the Italian Society of Palliative Care to improve the early integration of palliative care in medical oncology and to stimulate and guide the choices of those who daily face the problems of advanced stage cancer patients. The simultaneous administration of antineoplastic treatments and early palliative care was shown to be beneficial in metastatic cancer pathway outcomes. Patients who could benefit from early palliative care are those with an advanced cancer at presentation, a compromised PS for cancer, and/or morbidities, and who are too frail to receive treatment. According to the Bruera practice models, in which the combination of cancer management with early palliative care can be offered, three groups of patients needing simultaneous care were identified and three different models of the delivery of palliative care were proposed. In patients with good prognosis and low need of simultaneous care, the solo practice model and the request for consultations were suggested, while in patients with poor prognosis disease with high need of simultaneous care and in conditions with high need of simultaneous care, regardless of cancer prognosis, the integrated care approach should be offered. Palliative care consultation services are seldom accessible in the majority of Italian hospitals; thus the application of various practice models depends on available resources, and a shared care model with the structures of palliative care operating in the area is often required.
BACKGROUND: In December 2017, Law 219/2017, 'Provisions for informed consent and advance directives', was approved in Italy. The law is the culmination of a year-long process and the subject of heated debate throughout Italian society. Contentious issues (advance directives, the possibility to refuse medical treatment, the withdrawal of medical treatment, nutrition and hydration) are addressed in the law.
MAIN TEXT: What emerges clearly are concepts such as quality of life, autonomy, and the right to accept or refuse any medical treatment - concepts that should be part of an optimal relationship between the patient and healthcare professionals. The law maximizes the value of the patient's time to decide. Every patient is allowed to make choices for the present (consenting to or refusing current treatment) as well as for the future, conceived as a continuation of the present, and to decide what comes next, based on what he/she already knows. The law identifies three distinct but converging paths towards the affirmation of a care relationship based on reciprocal trust and respect: the possibility to consent to or refuse treatment, the shared care planning, and advance directives.
CONCLUSIONS: The fundamental point to emerge from the new Italian law is that consensus is an essential connotation of the treatment relationship. Consensus is not limited to the acceptance/rejection of medical treatment but is ongoing. It is projected into the future through shared care planning and advance directives which act as tools for self-determination and the manifestation of the beliefs and preferences of persons unable to express their will. These principles are in line with the idea of appropriate care as evaluated from two different perspectives, one of scientific adequacy and the other commensurate with the individual's resources, fragility, values, and beliefs. Surely, however, the new law is not the end of the matter on issues such as conscientious objection, which is deeply rooted within the Italian cultural and political debate. In this regard, healthcare institutions and policymakers will be called upon to develop and implement organizational policies aimed at the management of foreseeable conscientious objection in this field.