AI-based clinical decision-making systems in palliative medicine: ethical challenges.

BACKGROUND: Improving palliative care (PC) is demanding due to the increase in people with PC needs over the next few years. An early identification of PC needs is fundamental in the care approach: it provides effective patient-centred care and could improve outcomes such as patient quality of life, reduction of the overall length of hospitalisation, survival rate prolongation, the satisfaction of both the patients and caregivers and cost-effectiveness. METHODS: We reviewed literature with the objective of identifying and discussing the most important ethical challenges related to the implementation of AI-based data processing services in PC and advance care planning. RESULTS: AI-based mortality predictions can signal the need for patients to obtain access to personalised communication or palliative care consultation, but they should not be used as a unique parameter to activate early PC and initiate an ACP. A number of factors must be included in the ethical decision-making process related to initiation of ACP conversations, among which are autonomy and quality of life, the risk of worsening healthcare status, the commitment by caregivers, the patients' psychosocial and spiritual distress and their wishes to initiate EOL discussions CONCLUSIONS: Despite the integration of artificial intelligence (AI)-based services into routine healthcare practice could have a positive effect of promoting early activation of ACP by means of a timely identification of PC needs, from an ethical point of view, the provision of these automated techniques raises a number of critical issues that deserve further exploration.

Translation and Cultural Adaptation of the <i>Go Wish Game</i>: Thinking About Personal Values to Promote Advance Care Planning.

<b><i>Background:</i></b> The Go Wish Game (GWG) is a practical tool developed to ease advance care planning (ACP) conversations regarding end-of-life (EOL) issues. The game consists of a guide and 35 cards to help persons think about their personal values and priorities in the context of care and to discuss and share those concerns with families and health care professionals (HPs). <b><i>Objectives:</i></b> To promote ACP conversations in the Italian context, we developed an Italian version of the GWG by linguistic translation and cultural adaptation. <b><i>Design:</i></b> Cross-cultural adaptation process developed by Beaton et al. <b><i>Measurements:</i></b> We started with a back-and-forth translation to guarantee linguistic appropriateness. A prefinal Italian version was developed and then qualitatively evaluated by two focus groups (FGs) to assess content validity and cultural appropriateness. Participants' suggestions were discussed by the research groups and included in the final Italian version. <b><i>Data analysis:</i></b> The FGs' transcripts were analyzed by thematic analysis. <b><i>Sample:</i></b> One FG included HPs potentially involved in ACP, the second FG involved representative from local patient associations (RLPAs) with chronic, degenerative, and potentially terminal disease. Participants were purposefully selected. The two FGs involved eight HPs and five RLPAs, respectively. <b><i>Results:</i></b> Fewer explicit statements concerning EOL choices and a broader emphasis on the role of HPs in this discussion characterized the prefinal version. Our analysis identified three themes and five subthemes: (1) <i>improving translation</i>: linguistic redefinition and practical clarification; (2) <i>how to play the GWG</i>: needs and suggestions; and (3) <i>more than a game</i>. <b><i>Conclusion:</i></b> The Italian version developed in this study presents several cultural peculiarities. The rigorous translation and cultural adaptation process applied can enrich the existing literature by spreading a practical tool for initiating ACP in other languages and cultures. Further studies are needed to evaluate this tool's effectiveness in supporting ACP and training HPs to promote the ACP process.

Lesson Learned From Hospital Palliative Care Service in a Cancer Research Center in Italy: Results of 5 Years of Experience.

Background: International studies have documented that over a third of all hospital beds are occupied by patients with palliative care needs in their last year of life. Experiences of Palliative Care Services that take place prevalently or exclusively in hospital settings are very few in Italy. Objective: Describe clinical, educational and research activities performed by a hospital PCS and discussing opportunities and critical issues encountered in an Italian Cancer Center. Method: Retrospective data regarding adults with advanced stage diseases referred from January 2015 to December 2019. Results: Clinical activity - The PCS performed 2422 initial consultations with an average of 484 initial consultations per year. A majority of patients had advanced cancer, from 85% to 72%, with an average of 2583 total consultations per year and an average of 4.63 consultations per patient. The penetrance has increased over time from 6.3% to 15.75%. Educational and research activity - Since 2015, PCS has provided training to health professionals (HPs) of different departments of our hospital. Most of the educational projects for HPs were part of research projects, for example the communication training program, management of pain and end-of-life symptoms and the training program for PC-based skills. Conclusion: Our data suggests that a PCS able to provide palliative care to inpatients and outpatient and continuous training support to other hospital specialists can relatively quickly improve the level of its penetrance in hospital activities.

Consultations' demand for a hospital palliative care unit: how to increase appropriateness? Implementing and evaluating a multicomponent educational intervention aimed at increase palliative care complexity perception skill.

BACKGROUND: Planned, multidisciplinary teams' discussions of cases are common in cancer care, but their impact on patients' outcome is not always clear. Palliative care (PC) needs might emerge long before the last weeks of life. Many palliative care patients could be managed from the usual care staff, if appropriately trained; specialist palliative care should be provided to patients with more complex needs. Staff needs adequate training, so that only patients presenting a higher complexity are properly referred to the second level ("specialized") PC services. In the considered hospital setting, "tumour boards" (multidisciplinary discussions) refer often to a low number of patients. Overall complexity of patients' needs is hardly considered. METHODS: A mixed method pilot study with data triangulation of professionals' interviews and an independently structured evaluation of complexity of referred patients, before and after the intervention, using the PALCOM instrument. We trained four teams of professionals to deliver first-level palliation and to refer patients with complex needs detected in multidisciplinary discussions. A multicomponent, first level PC educational intervention, including information technology's adaptation, a training course, and bedside training was offered from the specialized PC Services, to all the HPs involved in multidisciplinary pancreas, lung, ovarian, and liver tumour boards. RESULTS: While the level of complexity of referred patients did not increase, trainees seemed to develop a better understanding of palliative care and a higher sensitivity to palliative needs. The number of referred patients increased, but patients' complexity did not. Qualitative data showed that professionals seemed to be more aware of the complexity of PC needs. A "meaning shift" was perceived, specifically on the referral process (e.g., "when" and "for what" referring to specialist PC) and on the teams' increased focus on patients' needs. The training, positively received, was adapted to trainees' needs and observations that led also to organizational modifications. CONCLUSIONS: Our multicomponent intervention positively impacted the number of referrals but not the patients' complexity (measured with the PALCOM instrument). Hospital staff does not easily recognize that patients may have PC needs significantly earlier than at the end of life.

A Qualitative Study on Nudging and Palliative Care: "An Attractive but Misleading Concept".

The debate about the ethical decision-making process in the healthcare context has been enriched with a theory called "nudging", which has been defined as the framing of information that can significantly influence behaviour without restricting choice. The literature shows very limited data on the opinion and experience of palliative care healthcare professionals on the use of nudging techniques in their care setting. The aim of this study is to explore the beliefs of experienced palliative care professionals towards nudging. We performed a qualitative study using textual data collected through a focus group. It was audio-recorded, and the transcripts were subjected to a thematic analysis. It was performed within an oncological research hospital with a small and multidisciplinary group of healthcare professionals specialised in PC. Participants reported two overarching positions grounded in two main themes: (1) translating nudging in the PC setting and (2) towards a neutral space. The participants found few justifications for the use of nudging in the PC field, even if it can be very attractive and reassuring. Participants also expressed concerns about the excessive risk of developing pure paternalism.

Preparedness and Capacity of Indian Palliative Care Services to Respond to the COVID-19 Pandemic: An Online Rapid Assessment Survey.

BACKGROUND: COVID-19 has been causing a high burden of suffering for patients and families. There is limited evidence on the preparedness of Indian palliative care services for the pandemic. AIM: This study aimed to assess the preparedness and capacity of Indian palliative care services in response to the COVID-19 pandemic. METHODS: A cross-sectional online survey was developed based on prior evidence and international health regulations. It was emailed to the Indian Palliative Care Association members and investigators' professional networks in India. One participant per palliative care service was requested. Descriptive analysis was used. RESULTS: Representatives of 78 palliative care services completed the survey. Three in four services had COVID-19 case definition and adapted their protocols for infection control (75%). About half of the services (55%) reported concerns about achieving appropriate hand hygiene in the community. More than half of the services (59%) had capacity to train nonspecialists for symptom control and psychological support. About half of the services reported that they had plans to redeploy staff (56%) and resources (53%) in the case of outbreaks. Two-fifths of the services used paper records to store an updated contact list of staff (40%) and did not have designated focal contacts for information update (40%). Staff anxiety related to personal infection risk and family care was relatively high (median score = 7 on a 1-10 scale). CONCLUSION: We recommend the following resource allocation to enable palliative care services to support the Indian health system in delivering essential care in this and future pandemics: (1) infection control, especially in the community; (2) training using existing clinical protocols to strengthen palliative care across the health system; and (3) redeployment plans.

[Artificial intelligence and palliative care: opportunities and limitations.] / Intelligenza artificiale e cure palliative: opportunità e limiti.

The so-called artificial intelligence tools applied to palliative care (machine learning, natural language processing) have great potential to support clinicians in improving decision-making processes and in identifying those who are at high risk of mortality or at greater risk of inappropriate treatment and/or non-positive outcomes. The improvement of prognostic abilities may help to avoid that some choices of patients with serious diseases are taken only in the last days of life, in the face of treatment options not previously discussed in an adequate and shared way. These tools can facilitate some essential aspects in the practice of palliative care, for example the activation of interviews that have as their objective the advance care planning and the definition of treatments consistent with the needs and desires of patients, especially in final stages of life. The development, also in our country, of projects for the application of artificial intelligence in palliative care requires particular attention to the possible organizational repercussions and to some ethical and relational aspects. It will be necessary to reflect on the most appropriate organizational models and on the specialized resources necessary in relation to the foreseeable increase in the number and variability of patients with early identified palliative care needs. These tools must not interfere in fundamental elements of the relationship between patient and doctor, that is the ability to communicate a poor prognosis in an individualized and ethically appropriate way.

Preparedness of African Palliative Care Services to Respond to the COVID-19 Pandemic: A Rapid Assessment.

CONTEXT: Palliative care is an essential component of the coronavirus disease 2019 (COVID-19) pandemic response but is overlooked in national and international preparedness plans. The preparedness and capacity of African palliative care services to respond to COVID-19 is unknown. OBJECTIVES: To evaluate the preparedness and capacity of African palliative care services to respond to the COVID-19 pandemic. METHODS: We developed, piloted, and conducted a cross-sectional online survey guided by the 2005 International Health Regulations. It was electronically mailed to the 166 African Palliative Care Association's members and partners. Descriptive analyses were conducted. RESULTS: About 83 participants from 21 countries completed the survey. Most services had at least one procedure for the case management of COVID-19 or another infectious disease (63%). Respondents reported concerns over accessing running water, soap, and disinfectant products (43%, 42%, and 59%, respectively) and security concerns for themselves or their staff (52%). Two in five services (41%) did not have any or make available additional personal protective equipment. Most services (80%) reported having the capacity to use technology instead of face-to-face appointment, and half (52%) reported having palliative care protocols for symptom management and psychological support that could be shared with nonspecialist staff in other health care settings. CONCLUSION: Our survey suggests that African palliative care services could support the wider health system's response to the COVID-19 pandemic with greater resources such as basic infection control materials. It identified specific and systemic weaknesses impeding their preparedness to respond to outbreaks. The findings call for urgent measures to ensure staff and patient safety.

Response and role of palliative care during the COVID-19 pandemic: A national telephone survey of hospices in Italy.

BACKGROUND: Palliative care is an important component of health care in pandemics, contributing to symptom control, psychological support, and supporting triage and complex decision making. AIM: To examine preparedness for, and impact of, the COVID-19 pandemic on hospices in Italy to inform the response in other countries. DESIGN: Cross-sectional telephone survey, in March 2020. SETTING: Italian hospices, purposively sampled according to COVID-19 regional prevalence categorised as high (>25), medium (15-25) and low prevalence (<15) COVID-19 cases per 100,000 inhabitants. A brief questionnaire was developed to guide the interviews. Analysis was descriptive. RESULTS: Seven high, five medium and four low prevalence hospices provided data. Two high prevalence hospices had experienced COVID-19 cases among both patients and staff. All hospices had implemented policy changes, and several had rapidly implemented changes in practice including transfer of staff from inpatient to community settings, change in admission criteria and daily telephone support for families. Concerns included scarcity of personal protective equipment, a lack of hospice-specific guidance on COVID-19, anxiety about needing to care for children and other relatives, and poor integration of palliative care in the acute planning response. CONCLUSION: The hospice sector is capable of responding flexibly and rapidly to the COVID-19 pandemic. Governments must urgently recognise the essential contribution of hospice and palliative care to the COVID-19 pandemic and ensure these services are integrated into the health care system response. Availability of personal protective equipment and setting-specific guidance is essential. Hospices may also need to be proactive in connecting with the acute pandemic response.

Long-term sustainability of a quality improvement program on cancer pain management: a complex intervention in an inpatient setting.

BACKGROUND: Several approaches towards pain control for admitted cancer patients have been suggested by the literature without achieving satisfactory results. In this quality improvement project, we proposed a multicomponent intervention. MEASURES: A set of indicators was established for each component of the project. The feasibility of both the intervention and its evaluation system was measured. According to the literature review and the analysis of the local context, 5 active components were identified, piloted, and assessed: training of ward professionals, education of patients and nonprofessional caregivers, regular pain assessment, specialist-level pain consultation procedures, and involvement of hospital management. RESULTS: Multiprofessional training programs with daily discussions, daily pain assessment, and a readily available specialized palliative care service seem to be the active components of this complex intervention. The quality improvement project achieved 2 years sustainability. CONCLUSION: Consolidated educational and organizational methodologies support the feasibility of this complex intervention.

"I go into crisis when ": ethics of care and moral dilemmas in palliative care.

BACKGROUND: Recognising and knowing how to manage ethical issues and moral dilemmas can be considered an ethical skill. In this study, ethics of care is used as a theoretical framework and as a regulatory criterion in the relationship among healthcare professionals, patients with palliative care needs and family members. This study is a part of a larger project aimed at developing and implementing a training programme on "ethical communication" addressed to professionals caring for patients with palliative care needs. The aim of this study was comprehending whether and how the ethics of care informs the way healthcare professionals make sense of and handle ethical issues in palliative care. METHODS: Qualitative study employing a theoretically driven thematic analysis performed on semi-structured interviews. The research was conducted in a clinical cancer centre in northern Italy. Eligible participants were physicians and nurses from eleven hospital wards who assisted patients with chronic advanced disease daily and had previously attended a 4-h training on palliative care held by the hospital Palliative Care Unit. RESULTS: The researchers identified five themes: morality is providing global care; morality is knowing how to have a relationship with patients; morality is recognizing moral principles; moral dimension and communication; and moral dilemmas are individual conflicts. CONCLUSIONS: Ethics of care seems to emerge as a theoretical framework that includes the belief systems of healthcare professionals, especially those assisting patients with palliative care needs; moreover, it allows the values of both the patients and professionals to come to light through the relationship of care. Ethics of care is also appropriate as a framework for ethical training.

Monitoring the Italian Home Palliative Care Services.

BACKGROUND: In Italy, there currently is a lack of reliable and consistent data on home palliative care provided to people near death. OBJECTIVES: Monitoring the activities of the Italian Home Palliative Care Services, according to the 2014 national data collection program entitled "Observatory of Best Practices in Palliative Care" and providing process/outcome measures on a subsample (Best Practice Panel), on regulatory standards and on complete/reliable activity data. DESIGN: A data collection web portal using two voluntary internet-based questionnaires in order to retrospectively identify the main care activity data provided within the year 2013 by Home care units. In the Best Practice Panel and International best practices, eligibility and quality measures refer to the national standards of the NL 38/2010. Setting/Subject: Home Palliative Care Services (HPCSs) that provided care from January to December 2013. RESULTS: 118 Home care units were monitored, globally accounting for 40,955 assisted patients within the year 2013 (38,384 cancer patients); 56 (47.5% of 118) were admitted in the Best Practice Panel. Non-cancer (5%) and pediatric (0.4%) patients represented negligible percentages of frail care patients, and a majority of patients died at home (respectively nearly 75% and 80% of cancer and non-cancer patients). CONCLUSION: The study demonstrated the feasibility of the collection of certified data from Home care services through a web-based system. Only 80% of the facilities met the requirements provided by the Italian NL 38/2010. Moreover, the extension of the palliative care services provided to frail non-cancer and pediatric patients, affected by complex and advanced chronic conditions, is still inadequate in Italy.

The "ARIANNA" Project: An Observational Study on a Model of Early Identification of Patients with Palliative Care Needs through the Integration between Primary Care and Italian Home Palliative Care Units.

OBJECTIVE: The aim of this study was to illustrate the characteristics of patients with palliative care (PC) needs, early identified by general practitioners (GPs), and to analyze their care process in home PC services. BACKGROUND: Early identification and service integration are key components to providing quality palliative care (PC) services ensuring the best possible service for patients and their families. However, in Italy, PC is often provided only in the last phase of life and for oncological patients, with a fragmented service. METHODS: Multicenter prospective observational study, lasting in total 18 months, implemented in a sample of Italian Home Palliative Care Units (HPCUs), enrolling and monitoring patients with limited life expectancy, early identified by 94 GPs. The study began on March 1, 2014 and ended on August 31, 2015. RESULTS: Nine hundred thirty-seven patients, out of a total pool of 139,071, were identified by GPs as having a low life expectancy and PC needs. Of these, 556 (59.3%) were nononcological patients. The GPs sent 433 patients to the HPCUs for multidimensional assessment, and 328 (75.8%) were placed in the care of both settings (basic or specialist). For all patients included in the study, both oncological and nononcological patients, there was a high rate of death at home, around 70%. DISCUSSION: This study highlights how a model based on early identification, multidimensional evaluation, and integration of services can promote adequate PC, also for noncancer patients, with a population-based approach.

Validity, reliability and responsiveness to change of the Italian palliative care outcome scale: a multicenter study of advanced cancer patients.

BACKGROUND: There is an increasing requirement to assess outcomes, but few measures have been tested for advanced medical illness. We aimed to test the validity, reliability and responsiveness of the Palliative care Outcome Scale (POS), and to analyse predictors of change after the transition to palliative care. METHODS: Phase 1: multicentre, mixed method study comprising cognitive and qualitative interviews with patients and staff, cultural refinement and adaption. Phase 2: consecutive cancer patients on admission to 8 inpatient hospices and 7 home-based teams were asked to complete the POS, the EORTC QLQ-C15-PAL and the FACIT-Sp (T0), to assess internal consistency, convergent and divergent validity. After 6 days (T1) patients and staff completed the POS to assess responsiveness to change (T1-T0), and agreement between self-assessed POS and POS completed by the staff. Finally, we asked hospices an assessment 24-48 h after T1 to assess its reliability (test re-test analysis). RESULTS: Phase I: 209 completed POS questionnaires and 29 cognitive interviews were assessed, revisions made and one item substituted. Phase II: 295 consecutive patients admitted to 15 PCTs were approached, 175 (59.3 %) were eligible, and 150 (85.7 %) consented. Consent was limited by the severity of illness in 40 % patients. We found good convergent validity, with strong and moderate correlations (r ranged 0.5-0.8) between similar items from the POS, the QLQ-C15-PAL and the FACIT-Sp. As hypothesised, the physical function subscale of QLQ-C15-PAL was not correlated with any POS item (r ranged -0.16-0.02). We found acceptable to good test re-test reliability in both versions for 6 items. We found significant clinical improvements during the first week of palliative care in 7/10 items assessed-pain, other symptoms, patient and family anxiety, information, feeling at peace and wasted time. CONCLUSIONS: Both the patient self-assessed and professional POS versions are valid and with an acceptable internal consistency. POS detected significant clinical improvements during palliative care, at a time when patients are usually expected to deteriorate. These results suggest that there is room for substantial improvement in the management of patients with advanced disease, across all key domains-symptoms, psychological, information, social and spiritual.

[Early palliative care]. / Le cure palliative precoci.

Early palliative care is a new intervention model that is increasingly used for patients with advanced chronic degenerative conditions. It has been shown to be effective in improving patients' quality of life and disease awareness and providing guidance and support in deciding on treatment choices, with significant cost savings for the healthcare system due to increased appropriateness of care. Several randomized controlled trials have demonstrated the efficacy of early palliative care, in particular in cancer patients and, more recently, also in patients with other advanced life-threatening illnesses. Results have been consistent in showing that early palliative care improves quality of life without negatively affecting survival compared with more aggressive treatment options. Palliative care should be delivered through an integrated approach to care that recognizes the roles of both general practitioners and hospital-based specialists for the early identification of patients who may most benefit from this intervention.

Barriers in the management of cancer-related pain and strategies to overcome them: findings of a qualitative research involving physicians and nurses in Italy.

INTRODUCTION AND AIMS: There are many barriers and obstacles that even today lead to an inadequate treatment of cancer-related pain. The aim is to describe the experiences of a group of Italian physicians and nurses as far as the nature of these barriers is concerned and the possible tools to be used to overcome them. MATERIAL AND METHOD: We run 5 focus groups with 42 healthcare professionals (11 physicians, 31 nurses) working in 5 hospitals in Italy. The findings of the focus groups were analysed according to the "Content Analysis" method. RESULTS: Five main items emerged: the importance of communication, the need for education regarding pain therapy, the ethnic/cultural/religious differences, the mutual trust and support within the working group, the daily challenges. CONCLUSION: In harmony with the most recent literature, physicians and nurses voice above all their need for an education more directly aimed at overcoming the prevailing barriers rooted in ignorance, prejudice and fears.

Implementation of a Hospital-Based Home Palliative Care at regional level: a quantitative study of the Ospedalizzazione Domiciliare Cure Palliative Oncologiche program in Lombardy.

BACKGROUND: Home Palliative Care services can overcome trends of institutionalized dying and support higher rates of death at home. Home Palliative Care services rarely scale-up into regional health planning. This generates unwarranted variability in service provision and outcomes across patients. Lombardy Region sponsored a Hospital-Based Home Palliative Care program, which implemented a common service to oncological patients in the territory, with the purpose to align hospitals toward a target of 65% deaths at home. AIM: Our work assesses service characteristics and outcomes achieved by the regional program from 2009 to 2011. DESIGN AND SETTING: Descriptive analysis from an institutional database of service characteristics, regional expenditure, and outcomes (temporary hospitalization and patient discharge) representing 11,841 patients served by 24 providers in the period 2009-2011. RESULTS: Targets of 65% deaths at home were achieved across the Region, with temporary re-hospitalization below 4.4%. The average pathway length stood above 1 month; intensity of care stood above ministerial and regional standards, with most home visits performed by nurses and physicians. CONCLUSIONS: The implementation of the regional program revealed three strengths (prompt identification and enrollment of eligible patients, and quantity of home visits) and two weaknesses (limited enrollment from general practitioners and multi-disciplinarity). This highlights opportunities for policy-makers to invest on regional protocols of Hospital-Based Home Palliative Care to reduce trends of institutionalized dying and align providers to homogeneous results.

The effectiveness of the quality program Pac-IficO to improve pain management in hospitalized cancer patients: a before-after cluster phase II trial.

BACKGROUND: Cancer-related pain continues to be a major healthcare issue worldwide. Despite the availability of effective analgesic drugs, published guidelines and educational programs for Health Care Professionals (HCPs) the symptom is still under-diagnosed and its treatment is not appropriate in many patients. The objective of the study is to evaluate the efficacy of the Pac-IFicO programme in improving the quality of pain management in hospitalised cancer patients. METHODS/DESIGN: This is a before-after cluster phase II study. After the before assessment, the experimental intervention - the Pac-IFicO programme - will be implemented in ten medicine, oncology and respiratory disease hospital wards. The same assessment will be repeated after the completion of the intervention. The Pac-IFicO programme is a complex intervention with multiple components. It includes focus group with ward professionals for identifying possible local obstacles to optimal pain control, informative material for the patients, an educational program performed through guides from the wards, and an organisational intervention to the ward. The primary end-point of the study is the proportion of cancer patients with severe pain. Secondary end-points include opioids administered in the wards, knowledge in pain management, and quality of pain management. We plan to recruit about 500 cancer patients. This sample size should be sufficient, after appropriate statistical adjustments for clustering, to detect an absolute decrease in the primary end-point from 20% to 9%. DISCUSSION: This trial is aimed at exploring with an experimental approach the efficacy of a new quality improvement educational intervention. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02035098.