Palliative care as a Fundamental Human Right: where are we at in Italy?

Abstract: The right to live with dignity during the final stages of existence, enshrined in national and supranational Charters of Rights, represents a significant step towards humanizing medicine and is integral to the right to health. Palliative Care, rooted in health, dignity, and therapeutic self-determination, has emerged as a fundamental human right and a moral imperative within health systems. It seeks to alleviate suffering, emphasizing the holistic well-being of patients with life-limiting illnes-ses. This paper provides an analysis of the current situation of Palliative Care in Italy and examines its critical aspects, also in relation to the issues found in other European and non-European countries. In Italy, although laws have been enacted to ensure the provision of Palliative Care, its availability remains inconsistent across different regions. Financial constraints and insufficient support hinder the comprehensive dissemination of these services. Recognizing the significance of Palliative Care, the Catholic Church also endorses its implementation as a response to human suffering and an approach to end-of-life care. Efforts to strengthen Palliative Care are critical to meeting the rising demand and ensuring access to compassionate and dignified care for all individuals in need. Through legislative advancements and adequate resources, Italy can make significant strides in advancing the provision of Palliative Care.

[Palliative care and legislation]. / Soins palliatifs et législation.

PALLIATIVE CARE AND LEGISLATION. Defined by the circular of August 26, 1986, palliative care is provided to people at the end of life, helping to relieve their suffering. Since the law of June 9, 1999, access to palliative care has been a right of all patients. With a view to alleviating suffering, human resources are mobilized to support the sick person. While human relationships play a central role, technology is also called. Caregivers have a responsibility to provide palliative care, as they are bound by professional ethics. Doctors and nurses have a duty to accompany the dying person to his final moments, ensuring the quality of a life that is coming to an end through appropriate care and measures. They are liable for any breach.

SOINS PALLIATIFS ET LÉGISLATION. Définis par la circulaire du 26 août 1986, les soins palliatifs sont dispensés à des personnes en fin de vie et contribuent au soulagement des souffrances. Depuis la loi du 9 juin 1999, l'accès aux soins palliatifs est un droit des personnes malades. Dans une optique de conjuration de la souffrance, des moyens humains sont mobilisés à travers l'accompagnement de la personne malade. Si les relations humaines occupent une place centrale, la technique est également sollicitée. Les soignants ont une responsabilité dans la délivrance des soins palliatifs, puisque la déontologie les y oblige. Le médecin et l'infirmier ont notamment le devoir d'accompagner le mourant jusqu'à ses derniers moments en assurant, par des soins et mesures appropriés, la qualité d'une vie qui prend fin. Leur responsabilité est engagée en cas de manquement.

[State of palliative care in France]. / État des lieux des soins palliatifs en France.

STATE OF PALLIATIVE CARE IN France. France is facing an epidemiological context marked by an increase in the number of elderly and very elderly people (often polypathological and dependent), and in the number of people suffering from serious or degenerative chronic illnesses. Considering people's needs and providing them with support in their last period of life has become more time-consuming, requiring appropriate care. The end-of-life trajectories of French people are heterogeneous, with a diversity of palliative and end-of-life trajectories coexisting, depending on their pathologies, personal situations, and frailties. This observation, combined with a legislative framework that has been evolving since the 90s to strengthen the rights of patients and their families, has prompted public authorities to reform end-of-life care provision, so that it is effective wherever the end of life takes place, and in line with societal expectations. A palliative care network is currently being set up at regional level and will be gradually extended to each region. Based on currently available data, the Centre National des Soins Palliatifs et de la Fin de Vie (National Center for Palliative and End-of-Life Care) has published an atlas to provide a better understanding of the evolution of end-of-life care provision and activity in France, the key figures of which are summarized in this article. This situation remains incomplete due to the lack of identification of trained professionals and the care procedures performed, especially at home. The government's current ambition to strengthen dedicated territorial organizations based on personalized care and support plans is a response to the present and future challenges of organizing palliative and end-oflife care in France.

ÉTAT DES LIEUX DES SOINS PALLIATIFS EN France. La France fait face à un contexte épidémiologique marqué par une augmentation du nombre de personnes âgées, voire très âgées (souvent polypathologiques et dépendantes), et de celui de personnes atteintes d'une maladie chronique grave ou dégénérative. La prise en compte des besoins des personnes et leur accompagnement pendant leur dernière période de vie devenue plus longue nécessite une prise en charge adaptée. Les parcours de fin de vie des Français sont hétérogènes, faisant coexister une diversité de trajectoires palliatives et de fin de vie en fonction de leurs pathologies, leur situation personnelle et leurs fragilités. Ce constat ainsi qu'un cadre législatif évoluant depuis les années 1990 vers un renforcement des droits des personnes malades et de leurs proches engagent les pouvoirs publics en direction d'une réforme de l'offre en soins de la fin de vie afin qu'elle soit effective quel que soit le lieu et en adéquation avec les attentes sociétales. Une filière de soins palliatifs est en cours de structuration au niveau régional et est amenée à se décliner de manière graduée à l'échelle de chaque territoire. Sur la base des données actuellement disponibles, le Centre national des soins palliatifs et de la fin de vie publie un atlas pour mieux comprendre l'évolution de l'offre et de l'activité en matière d'accompagnement de la fin de vie en France, dont une synthèse des chiffres clés est proposée dans cet article. Cet état des lieux reste incomplet par manque d'identification des professionnels formés ainsi que des actes de soins réalisés, et ceci est d'autant plus vrai au domicile. L'ambition gouvernementale actuelle d'aller notamment vers un renforcement des organisations territoriales dédiées qui s'appuient sur des plans personnalisés de soins d'accompagnement constitue une réponse aux défis d'aujourd'hui et de demain pour l'organisation des soins palliatifs et de la fin de vie en France.

En busca del buen morir / In search of a good death

La muerte siempre ha generado desconcierto, por lo que acompañar en este proceso de final de vida conlleva un alto compromiso existencial. Si a esta difícil tarea se le agregan los condicionantes hospitalarios o legales que sufren los enfermos en su agonía, estamos ante una muerte aterradora, muy distante de una partida que pueda ser considerada amorosa. Como sabemos, la palabra "clínica" hace referencia a la práctica de atender al pie de la cama del paciente, aliviando el dolor del que está por partir; sin embargo, el "corsé legal" de la muerte está alejando al médico de aquel que debiera recibir toda su atención y sus cuidados, atándole el brazo para acompañarlo en el buen morir. Deberíamos debatir y acordar una estrategia que enriquezca la experiencia del momento final de la vida, de modo que ese conjunto acotado de pacientes pueda elegir su forma de partir. Es de un valor incalculable despertar la compasión en este tema tan importante que preocupa al ser humano desde los inicios de la civilización. Sería muy fructífero que aprovechemos la transmisión de sabiduría de siglos de antiguas culturas que han sabido cuidar con humildad la vida hasta el instante de morir. (AU)

Death has always implied confusion, so accompanying this end-of-life process entails a highexistential commitment. If we add to this difficult task the hospital or legal constraints suffered bypatients in their agony, we are facing a terrifying death, very far from a departure that can be considered a loving one. As we know, the word "clinical" refers to the practice of caring for the patient very close to the bed, alleviating the pain of whom is about to leave; however, the "legal corset" of death is separating the doctor from the one who should receive all his attention and care, preventing him from accompanying the pacient in his/her good dying. We should discuss and agree on a strategy that enriches the experience of the end of life, so that patients could choose the way to leave. It is of incalculable value to awaken compassion on this important issue that has concerned human since the beggining of civilization. It would be very fruitful if we take advantage of the enormous wisdom of ancient cultures that have humbly cared for life until the moment of death. (AU)

Changing Pediatric Hospice and Palliative Care Through Medicaid Partnerships.

Since its inception in 2010, the Concurrent Care for Children Provision of the Affordable Care Act has enabled seriously ill pediatric patients and their families to access comprehensive, supportive hospice services while simultaneously receiving ongoing treatment-directed therapies. Although this groundbreaking federal legislation has resulted in improvements in care for vulnerable pediatric patients, the implementation of the law has varied from state to state through Medicaid programming. The pediatric professional community is called to consider how Medicaid services can more effectively be delivered by leveraging legislative mandates and collaborative relationships between clinicians, Medicaid administrators, and policy makers. In this article, we examine ways concurrent care has been executed in 3 different states and how key stakeholders in care for children with serious illness advocated to ensure effective implementation of the legislation. The lessons learned in working with state Medicaid programs are applicable to any advocacy issue impacting children and families .

[Withholding or withdrawing life-sustaining treatments in acute oncology situations: History and regulatory aspects in France]. / La « Limitation et/ou arrêt des thérapeutiques ¼ (LAT) en oncologie face à une situation aigüe : historique et aspects réglementaires en France.

The management of oncology patients, especially hospitalized patients, can lead to almost daily discussions regarding therapeutic limitations. Here, we review the history and propose a summary of the texts framing the notion of "withholding and withdrawing life-sustaining treatment" in oncology practice in France. This decision is regulated by the Claeys-Léonetti Law of February 2, 2016 recommending a collegial discussion and its documentation in the medical record. The decision to withhold or withdraw life-sustaining treatments is the subject of discussion between the patient, his physicians and his family and may take place at any time during his management. The work of intensive-care physicians provides many useful recommendations for acute oncology situations, however articles specific for oncology practice are scarce; this is a topic that oncologists must take up.

Changes of the hepatic subcapsular blood flow in a case of high-grade retroperitoneal liposarcoma: what to expect?

Changes of the hepatic subcapsular blood flow with the early appearance of hypervascularity near the falciform ligament are rare radiologic findings. They present most frequently in cases of superior vena cava (SVC) obstruction and are related to the recruitment of the cavo-mammary-phrenic-hepatic-capsule-portal and the cavo-superficial-umbilical-portal pathways. We present the case of a 52-year-old female patient with an highly aggressive retroperitoneal liposarcoma with SVC obstruction caused by external compression due to a mediastinal metastatic mass. The patient exhibited no symptoms of SVC obstruction due to the collateral cavo-portal pathways.

Physician attitudes to voluntary assisted dying: a scoping review.

BACKGROUND: Voluntary assisted dying (VAD) became legal in the Australian state of Victoria on 19 June 2019 and will be legal in Western Australia from 2021. Other Australian states are progressing similar law reform processes. In Australia and internationally, doctors are central to the operation of all legal VAD regimes. It is broadly accepted that doctors, as a profession, are less in favour of VAD law reform than the rest of the community. To date, there has been little analysis of the factors that motivate doctors' support or opposition to legalised VAD in Australia. AIM: To review all studies reporting the attitudes of Australian doctors regarding the legalisation of VAD, including their willingness to participate in it, and to observe and record common themes in existing attitudinal data. DESIGN: Scoping review and thematic analysis of qualitative and quantitative data. DATA SOURCES: CINAHL, Embase, Scopus, PubMed and Informit were searched from inception to June 2019. RESULTS: 26 publications detailing 19 studies were identified. Thematic analysis of quantitative and qualitative findings was performed. Three overarching themes emerged. 'Attitudes towards regulation' encompassed doctors' orientation towards legalisation, the shortcomings of binary categories of support or opposition and doctors' concerns about additional regulation of their professional practices. 'Professional and personal impact of legalisation' described tensions between palliative care and VAD, and the emotional and social impact of being providers of VAD. 'Practical considerations regarding access' considered doctors' concerns about eligibility criteria and their willingness to provide VAD. CONCLUSION: A detailed understanding of medical perspectives about VAD would facilitate the design of legislative models that take better account of doctors' concerns. This may facilitate their greater participation in VAD and help address potential access issues arising from availability of willing doctors.

[There is no progress without school. Postgraduate specialization school completes the paradigm shift in palliative care.] / Non c'è progresso senza scuola. La Scuola di specializzazione completa il cambio di paradigma delle cure palliative.

With the conversion of law decree no. 34 of 19 May 2020, bearing urgent measures concerning health, support to work and the economy, as well as social policies related to CoViD-19 epidemiological emergency, thanks to the approval of an amendment to legislative decree "Rilancio" signed by Giorgio Trizzino, the Specialization school in medicine and palliative care will be established starting from a.y. 2021-2022. Additionally, a course in pediatric palliative care will be introduced in pediatrics specialization schools. The news has been welcomed with enthusiasm by the scientific community and the main stakeholders, some of which have made a strong contribution to this result: the Italian Society for Palliative Care, the Italian Federation for Palliative Care, the Maruzza Levebvre d'Ovidio Foundation, as well as the many professionals, institutions, and NPOs that have been supporting for the past forty years the progress of palliative care in Italy. An assessment of the impact of such a measure and its effects entails due process and contextualization in different areas: first of all, that of demand and current supply, followed by the historical-cultural, the social, and the normative.

Between illness and death: "Euthanasia".

The arguments for and against euthanasia present a complex picture that will need to be discussed and decided in Mexico. This article addresses some relevant aspects such as the legal determination of death, the field of bioethics intervention, terminology related to euthanasia, its classifications, international instruments promoting human rights, as well as reflections on the importance of palliative care and the patient's right to be in a terminal situation to act in accordance with their goals, expectations and beliefs, in the context of their family and social relationships.

Los argumentos a favor y en contra de la eutanasia exponen un panorama complejo, que será necesario discutir y decidir en México. En este artículo se abordan algunos aspectos relevantes, como la determinación legal de la muerte, el campo de intervención de la bioética, la terminología relacionada con la eutanasia, sus clasificaciones, los instrumentos internacionales promotores de los derechos humanos, y reflexiones sobre la importancia de los cuidados paliativos y el derecho que tiene el paciente en situación terminal para actuar conforme a sus objetivos, expectativas y creencias, en el contexto de sus relaciones familiares y sociales.

Implementation of a Perinatal Hospice Program.

BACKGROUND: In 2017, the Nebraska Unicameral passed legislative bill 506, which required physicians to inform patients carrying fetuses diagnosed with a life-limiting anomaly of the option to enroll in a comprehensive perinatal hospice program. The bill also required the Department of Health & Human Services to provide information about statewide hospice programs. Families enrolled in hospice programs are better prepared for the birth and death of their child. This large academic medical center was listed on the registry but did not have a formal perinatal hospice program. PURPOSE: Implementation of a comprehensive perinatal hospice program. METHODS: The program was designed and implemented, beginning with the formation of an interdisciplinary team. Guidelines were developed for program referral, care conferences, team communication, and family follow-up. The team was educated. Electronic record documentation and order set were implemented. A data collection process was developed to track referrals and critical data points. RESULTS: The perinatal hospice program has been accepting referrals but has not had any qualifying referrals. IMPLICATIONS FOR PRACTICE: The development of an evidence-based guideline for referral that can improve referral consistency. While trisomy 13 and 18 diagnosis was historically considered life-limiting, these families now have the option of full intervention and transfer for specialists. IMPLICATIONS FOR RESEARCH: Future research will include collecting data from patients who could have benefited from hospice, including infants who were born 20 to 22 weeks, or for maternal reasons. Future research will evaluate the experience after bereavement, the hospice team's experience, and the effectiveness of the referral process.

Availability of Internationally Controlled Essential Medicines in the COVID-19 Pandemic.

Section 2 of the 2019 World Health Organization Model List of Essential Medicines includes opioid analgesics formulations commonly used for the control of pain and respiratory distress, as well as sedative and anxiolytic substances such as midazolam and diazepam. These medicines, essential to palliative care, are regulated under the international drug control conventions overseen by United Nations specialized agencies and treaty bodies and under national drug control laws. Those national laws and regulations directly affect bedside availability of Internationally Controlled Essential Medicines (ICEMs). The complex interaction between national regulatory systems and global supply chains (now impacted by COVID-19 pandemic) directly affects bedside availability of ICEMs and patient care. Despite decades of global civil society advocacy in the United Nations system, ICEMs have remained chronically unavailable, inaccessible, and unaffordable in low- and-middle-income countries, and there are recent reports of shortages in high-income countries as well. The most prevalent symptoms in COVID-19 are breathlessness, cough, drowsiness, anxiety, agitation, and delirium. Frequently used medicines include opioids such as morphine or fentanyl and midazolam, all of them listed as ICEMs. This paper describes the issues related to the lack of availability and limited access to ICEMs during the COVID-19 pandemic in both intensive and palliative care patients in countries of all income levels and makes recommendations for improving access.

Pediatric Cardiology Specialist's Opinions Toward the Acceptability of Comfort Care for Congenital Heart Disease.

In order to evaluate physicians' willingness to seek legal action to mandate surgery when parents refuse surgery for various congenital heart lesions, we surveyed pediatric cardiologists and cardiovascular surgeons at 4 children's hospitals. We asked whether physicians would support parental refusal of surgery for specific heart defects and, if not, whether they would seek legal action to mandate surgery. We then analyzed associations between physicians' willingness to mandate surgery and national operative mortality rates for each lesion. We surveyed 126 cardiologists and 9 cardiac surgeons at four tertiary referral centers. Overall response rate was 77%. Greater than 70% of physicians would seek legal action and mandate surgery for the following lesions: ventricular septal defect, coarctation of the aorta, complete atrioventricular canal, transposition of the great arteries, tetralogy of Fallot, and unobstructed total anomalous pulmonary venous return. Surgery for all of these lesions has reported mortality rates of < 5%. Physicians were less likely to seek legal action when parents refused surgery for Shone complex, any single ventricle lesion, or any congenital heart disease accompanied by Trisomy 13 or Trisomy 18. Among experts in pediatric cardiology, there is widespread agreement about the appropriate response to parental refusal of surgery for most congenital heart lesions, and these lesions tended to be heart defects with lower surgical mortality rates. Lesions for which there was greater consensus among experts were those with the best outcomes. There was less consensus for lesions with higher mortality rates. Such surveys, revealing disagreement among expert professionals, can provide an operational definition of the current professional "gray zone" in which parental preferences should determine treatment.

Evolution of Italian laws banning trafficking, use and abuse of psychotropic drugs.

The penalty system implemented by Italian law still represents a barrier against psychoactive drugs and drug addiction, especially at a time when the age of first consumption has considerably dropped. Presidential Decree n. 309 of October 9, 1990 entitled "Consolidation of the laws governing drugs and psychotropic substances, the prevention, treatment and rehabilitation of drug addicts", and referred to as Presidential Decree 309/90, is the reference text for the cultivation, production, trade and use of narcotics and other psychoactive substances in Italy. The Presidential Decree has its origins in the now-forgotten law of December 22, 1975, n. 685, amended by law 162/90, which provided a draft of the current Presidential Decree 309/90. The current text has been amended numerous times over the years.

Nurses' knowledge of law at the end of life and implications for practice: A qualitative study.

BACKGROUND: Some patients do not receive adequate pain and symptom relief at the end of life, causing distress to patients, families and healthcare professionals. It is unclear whether undertreatment of symptoms occurs, in part, because of nurses' concerns about legal and/or disciplinary repercussions if the patient dies after medication is administered. AIM: The aim was to explore nurses' experiences and knowledge of the law relating to the provision of end-of-life pain and symptom relief. DESIGN: Semi-structured interviews with nurses were assessed using a six-stage hybrid thematic analysis technique. SETTING/PARTICIPANTS: Four face-to-face and 21 telephone interviews were conducted with nurses who routinely prescribed and/or administered pain and symptom relief to patients approaching the end of their lives in Queensland and New South Wales, Australia. RESULTS: While many nurses had no personal experiences with legal or professional repercussions after a patient had died, the fear of hastening death and being held accountable was frequently discussed and regarded as relevant to the provision of inadequate pain and symptom relief. Concerns included potential civil or criminal liability and losing one's job, registration or reputation. Two-thirds of participants believed that pain relief was sometimes withheld because of these legal concerns. Less than half of the interviewed nurses demonstrated knowledge of the doctrine of double effect, the legal protection for health professionals who provide end-of-life pain and symptom relief. CONCLUSION: Education is urgently required to strengthen nurses' knowledge of the legal protections supporting the provision of appropriate palliative medication, thereby improving their clinical practice with end-of-life patients.

Improving community access to terminal phase medicines through the implementation of a 'Core Medicines List' in South Australian community pharmacies.

OBJECTIVES: Difficulties accessing medicines in the terminal phase hamper the ability of patients to die at home. The aim of this study was to identify changes in community access to medicines for managing symptoms in the terminal phase throughout South Australia (SA), following the development of a 'Core Medicines List' (the List) while exploring factors predictive of pharmacies carrying a broad range of useful medicines. METHODS: In 2015, SA community pharmacies were invited to participate in a repeat survey exploring the availability of specific medicines. Comparisons were made between 2012 and 2015. A 'preparedness score' was calculated for each pharmacy, scoring 1 point for each medicine held from the following 5 classes: opioid, benzodiazepine, antiemetic, anticholinergic and antipsychotic. RESULTS: The proportion of pharmacies carrying all items from the List rose from 7% in 2012 to 18% in 2015 (p=0.01). Multiple linear regression demonstrated that a monthly online newsletter subscription (p=0.04) and provision of a clinical service to aged care facilities (p=0.02) were predictors of pharmacies carrying all items on the List. Furthermore, multiple linear regression demonstrated that the provision of an afterhours service (p=0.02) and clinical services to aged care facilities (p=0.04) were predictors of pharmacies with a high 'preparedness score'. In responding to issues with supply of medicines at end of life, respondents were more likely to contact the prescriber if aware of palliative patients (p=0.03). CONCLUSIONS: These results suggest that there is value in developing and promoting a standardised list of medicines, ensuring that community palliative patients have timely access to medicines in the terminal phase.

Palliative care clinicians' knowledge of the law regarding the use of the Deprivation of Liberty Safeguards (DoLS).

OBJECTIVES: To examine palliative care clinicians' level of knowledge of the law regarding the use of the Deprivation of Liberty Safeguards (DoLS). METHODS: Regional postal survey of palliative care clinicians working in hospices in the East of England, undertaken in April 2015. Clinicians' level of knowledge was assessed by their response to 7 factual questions. Data regarding self-reported levels of confidence in applying the Safeguards was collected, alongside information regarding the number of times they had used DoLS in practice. A free-text section invited additional comments from participants. RESULTS: There were 47 responses from 14 different organisations; a response rate of 68%. Respondents included consultants, specialty and associate specialists, registrars, nurses and social workers. Higher self-reported confidence and training in the use of DoLS was associated with higher factual knowledge. Consultants had the highest level of knowledge, training and experience. Doctors of other grades, nurses and social workers recorded less knowledge and experience and scored lower in the knowledge sections. The free-text comments revealed difficulty applying the Safeguards in practice, particularly among the consultant responses, based around several themes: insufficient guidance on how to use the Safeguards, process after death, uncertainty as to relevance to palliative care and delays in assessments. CONCLUSIONS: Clinicians working in palliative care have good levels of knowledge of the DoLS. Despite this concerns were raised, particularly by consultants; uncertainty as to when they should be used and the relevance of the Safeguards in clinical practice. Further guidance should be given to clinicians working in this specialty to ensure that clinical practice is both lawful and in the patients' best interests.