Palliative Care against Medically Assisted Death? Misunderstanding and Instrumental Objections.

CONTEXT: Palliative Care (PC) and Medically Assisted Death (MAD), specifically assisted suicide and euthanasia, are distinct practices characterized by differing objectives, methods, implementation and outcomes. Representatives of PC, including scientific societies or physicians, may, in certain cases, adopt a critical stance towards MAD. OBJECTIVES: The study aims to explore the underlying reasons for such opposition. METHODS: To this end, the philosophical underpinnings and legal conditions of PC and MAD will be analyzed. RESULTS: The ethical and philosophical landscape of PC and MAD leads us to identify, on one hand, the Hippocratic paradigm and, on the other hand, what we call Socratic medicine. From a legal analysis perspective, the presence of intolerable suffering serves as a common ground between the two practices, albeit risking being the subject of misunderstandings and instrumental objections. CONCLUSION: Preventing an instrumental use of PC in relation to MAD is crucial to enable the respect and the coexistence of the two practices.

Pain Management at the End of Life in the Emergency Department: A Narrative Review of the Literature and a Practical Clinical Approach.

Access to pain management is a fundamental human right for all people, including those who are at the end of life (EOL). In end-stage patients, severe and uncontrolled pain is a common cause of admission to the emergency department (ED), and its treatment is challenging due to its complex, often multifactorial genesis. The aim of this narrative review was to identify the available literature on the management of severe EOL pain in the ED. The MEDLINE, SCOPUS, EMBASE, and CENTRAL databases were searched from inception to 1 April 2023 including randomised controlled trials, observational studies, systemic or narrative reviews, case reports, and guidelines on the management of EOL pain in the ED. A total of 532 articles were identified, and 9 articles were included (5 narrative reviews, 2 retrospective studies, and 2 prospective studies). Included studies were heterogeneous on the scales used and recommended for pain assessment and the recommended treatments. No study provided evidence for a better approach for EOL patients with pain in the ED. We provide a narrative summary of the findings and a review of the management of EOL pain in clinical practice, including (i) the identification of the EOL patients and unmet palliative care needs, (ii) a multidimensional, patient-centred assessment of the type and severity of pain, (iii) a multidisciplinary approach to the management of end-of-life pain, including an overview of non-pharmacological and pharmacological techniques; and (iv) the management of special situations, including rapid acute deterioration of chronic pain, breakthrough pain, and sedative palliation.

Compassion: Learning Needs and Training Opportunities-a Survey Among Palliative Healthcare Providers in Italy.

Compassion is a key quality in palliative care; however, there is a lack of evidence of the need to discuss the theme of compassion and professionals' training in the subject. The study aimed to investigate the knowledge of the construct of a sample of Italian healthcare professionals (HCPs) working in palliative care. In addition, their learning needs and training opportunities were explored. An online survey was completed by 330 HCPs. It was divided into five sections which examined knowledge of the construct of compassion and the perception of its utility in palliative care, the activities carried out in eventual training in compassion, and professionals' learning needs thereof. Professionals who had knowledge of the right definition of compassion considered it more useful and training more necessary. Most of the sample never received training about compassion. However, 97% of those who received training believed it to be necessary. Satisfaction with training was higher among those who received multidisciplinary team education. Training occasions are relatively rare in the Italian context, although they seem to increase knowledge and awareness about the construct utility and training necessity. Besides, multidisciplinary team training seems to be more satisfying. Offering team training on compassion can promote a deeper awareness of it and of its utility in clinical practice.

How to communicate with families living in complete isolation.

IMPORTANCE: During the SARS-CoV-2 pandemic, a complete physical isolation has been worldwide introduced. The impossibility of visiting their loved ones during the hospital stay causes additional distress for families: in addition to the worries about clinical recovery, they may feel exclusion and powerlessness, anxiety, depression, mistrust in the care team and post-traumatic stress disorder. The impossibility of conducting the daily meetings with families poses a challenge for healthcare professionals. OBJECTIVE: This paper aims to delineate and share consensus statements in order to enable healthcare team to provide by telephone or video calls an optimal level of communication with patient's relatives under circumstances of complete isolation. EVIDENCE REVIEW: PubMed, Cochrane Database of Systematic Reviews, Database of Abstracts and Reviews of Effectiveness and the AHCPR Clinical Guidelines and Evidence Reports were explored from 1999 to 2019. Exclusion criteria were: poor or absent relevance regarding the aim of the consensus statements, studies prior to 1999, non-English language. Since the present pandemic context is completely new, unexpected and unexplored, there are not randomised controlled trials regarding clinical communication in a setting of complete isolation. Thus, a multiprofessional taskforce of physicians, nurses, psychologists and legal experts, together with some family members and former intensive care unit patients was established by four Italian national scientific societies. Using an e-Delphi methodology, general and specific questions were posed, relevant topics were argumented, until arriving to delineate position statements and practical checklist, which were set and evaluated through an evidence-based consensus procedure. FINDINGS: Ten statements and two practical checklists for phone or video calls were drafted and evaluated; they are related to who, when, why and how family members must be given clinical information under circumstances of complete isolation. CONCLUSIONS AND RELEVANCE: The statements and the checklists offer a structured methodology in order to ensure a good-quality communication between healthcare team and family members even in isolation, confirming that time dedicated to communication has to be intended as a time of care.

Cancer Pain Management: An Italian Delphi Survey from the Rational Use of Analgesics (RUA) Group.

BACKGROUND: In patients with cancer, the prevalence of pain is high, and pain management is often challenging despite the wide availability of drugs and guidelines. METHODS: This Delphi survey was organized within the Rational Use of Analgesics (RUA) Group projects to reach a consensus among Italian palliative care specialists on pain assessment and management. Items were identified from recent publications on cancer pain and guidelines. RESULTS: This survey included input from 190 palliative care specialists representing all Italian territory. A consensus was reached on 17 statements. Items concerning pain assessment achieved over 70% agreement amongst the participants. Items on principles of pain management and management according to type of pain, including breakthrough cancer-related pain and neuropathic pain also achieved high levels of agreement. CONCLUSION: Results from the RUA project showed that Italian palliative care specialists had a particular interest in items related to pain challenges, in addition to the evaluation and control of pain associated with cancer. However, some discrepancies between current guidelines and clinical practice were observed.

Medical assistance in dying: just an ethical or legal issue?

According to current vital statistics suicide appears as a growing public health problem in most Western countries. However, suicide is rarely discussed in scientific journals, possibly because of a persisting moral stigma. As a consequence, the diverse bases of suicidal behavior are little understood while the role of Chronic-Degenerative Terminal Diseases (CDTD) has been poorly investigated. In the present study, the topic of suicidality was addressed in a clinical, holistic, perspective in an attempt to clarify how, in some chronically ill patients, the decision to end their own life is taken independently from mental disorders, being conversely, the expression of a rational psychological pattern which copes with the burden of chronic illnesses to become an integral part of their clinical spectrum. An assisted suicide (AS) request should therefore be considered from a clinical point of view and not only as an ethical or legal issue, in fact a holistic evaluation of the patient's situation must be performed, conferring the decisions making process a further in-depth line of thinking. In this study we first examined the relationship between suicide and CDTD as reported in the medical literature; then we reviewed the psychological theories which allegedly explain suicidal behavior; finally we discussed the possible role of a full-fledged palliative care in preventing suicide and in managing death requests by CDTD patients.

[Ethical, deontologic and legal considerations about SIAARTI Document "Clinical ethics recommendations for the allocation of intensive care treatments, in exceptional, resource-limited circumstances".] / Considerazioni etiche, deontologiche e giuridiche sul Documento SIAARTI "Raccomandazioni di etica clinica per l'ammissione a trattamenti intensivi e per la loro sospensione, in condizioni eccezionali di squilibrio tra necessità e risorse disponibili".

On 6 March 2020, the Italian Society of Anaesthesia Analgesia Resuscitation and Intensive care (SIAARTI) published the document "Clinical Ethics Recommendations for Admission to and Suspension of Intensive Care in Exceptional Conditions of Imbalance between Needs and Available Resources". The document, which aims to propose treatment decision-making criteria in the face of exceptional imbalances between health needs and available resources, has produced strong reactions, within the medical-scientific community, in the academic world, and in the media. In the current context of international public health emergency caused by the CoViD-19 epidemic, this work aims to explain the ethical, deontological and legal bases of the SIAARTI Document and to propose methodologic and argumentative integrations that are useful for understanding and placing in context the decision-making criteria proposed. The working group that contributed to the drafting of this paper agrees that it is appropriate that healthcare personnel, who is particularly committed to taking care of those who are currently in need of intensive or sub-intensive care, should benefit from clear operational indications that are useful to orient care and, at the same time, that the population should know in advance which criteria will guide the tragic choices that may fall on each one of us. This contribution therefore firstly reflects on the appropriateness of the SIAARTI standpoint and the objectives of the SIAARTI Document. It then turns to demonstrate how the recommendations it proposes can be framed within a shared interdisciplinary, ethical, deontological and legal perspective.

Palliative Sedation in Terminal Cancer Patients Admitted to Hospice or Home Care Programs: Does the Setting Matter? Results From a National Multicenter Observational Study.

CONTEXT: Few studies regarding palliative sedation (PS) have been carried out in home care (HC) setting. A comparison of PS rate and practices between hospice (HS) and HC is also lacking. OBJECTIVES: Comparing HC and HS settings for PS rate, patient clinical characteristics before and during PS, decision-making process, and clinical aspects of PS. METHODS: About 38 HC/HS services in Italy participated in a multicenter observational longitudinal study. Consecutive adult cancer patients followed till death during a four-month period and undergoing PS were eligible. Symptom control and level of consciousness were registered every eight hours to death. RESULTS: About 4276 patients were screened, 2894 followed till death, and 531 (18%) underwent PS. PS rate was 15% in HC and 21% in HS (P < 0.001). Principal refractory symptoms were delirium (54%) and dyspnea (45%), respectively, more common in HC (P < 0.001) and HS (P = 0.03). Informed consent was not obtained in 72% of patients but achieved by 96% of families. Midazolam was the most used drug (94% HS vs. 75% HC; P < 0.001) mainly by continuous infusion (74% HC vs. 89% HS; P < 0.001). PS duration was less than 48 hours in 67% of patients. Hydration during PS was less frequent in HC (27% vs. 49%; P < 0.001). In the eight hours before death, consciousness level was unrousable to mild physical stimulation in 81% and symptom control complete in 89% of cases. CONCLUSION: Our results show feasibility of PS in HC and HS and suggest setting differences in rates, indications, and practice of PS, possibly related to patients' selection or care organization.

Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care.

Advance care planning (ACP) is increasingly implemented in oncology and beyond, but a definition of ACP and recommendations concerning its use are lacking. We used a formal Delphi consensus process to help develop a definition of ACP and provide recommendations for its application. Of the 109 experts (82 from Europe, 16 from North America, and 11 from Australia) who rated the ACP definitions and its 41 recommendations, agreement for each definition or recommendation was between 68-100%. ACP was defined as the ability to enable individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate. Recommendations included the adaptation of ACP based on the readiness of the individual; targeting ACP content as the individual's health condition worsens; and, using trained non-physician facilitators to support the ACP process. We present a list of outcome measures to enable the pooling and comparison of results of ACP studies. We believe that our recommendations can provide guidance for clinical practice, ACP policy, and research.

The rights of the dying child and the duties of healthcare providers: the "Trieste Charter".

PURPOSE: The death of a child is a devastating and tragic event for all those involved. This charter aims to help healthcare workers and people assisting terminally ill children to recognize some important rights of the child, with some related suggestions. We consider it important to have a trace of this process, based on the skillfulness of long-lasting experts. METHODS: In September 2012, a group of professionals working with children affected by incurable illness in Italy launched a project to formulate the charter. Trieste is the city where the group of professionals first met to start the project. The first step was a detailed literature search on the topic, the second step was an extensive discussion among the professionals (writing committee) to prepare a first draft; later (third step) the draft was revised by 38 experts in different areas, including patient and family representatives, and lastly (fourth step) the final version of the charter was prepared. RESULTS: We developed a document containing 10 rights and corresponding duties that could be applied to any clinical situation or circumstances and used as a guide by professionals and families caring for children in the terminal stages of an illness. CONCLUSIONS: The Trieste Charter proposes fundamental rights for children who are approaching the end of their lives. The charter will have achieved its purpose when every person caring for a dying child is capable of staying near the child until the last moments of his or her life, prepared to accept his or her death, ensuring both respect and dignity.

Palliative sedation: the position statement of the Italian National Committee for Bioethics.

In January 2016 the Italian National Bioethics Committee (NBC) published a position statement entitled Deep and continuous palliative sedation in the imminence of death, related to the use of sedation and analgesia for relief from pain and psychological distress in dying patients. In this statement the Committee points out the clinical and ethical appropriateness of palliative sedation as a therapeutic procedure. As a result, today palliative sedation has to be considered useful, scientifically safe and reliable, and acknowledged as an integral part of good clinical practice. At the same time, the position statement, once and for all, makes clear that palliative sedation cannot and must not be equated with the practice of euthanasia. Thus, this document should be known by health professionals caring for dying patients not only in palliative as well as in intensive care settings, but it should be also considered as a milestone aimed to encourage and ease a widespread implementation of this procedure in all health care settings.

[Quality end of life in uremic patients: theory and practice]. / Qualità del fine vita nel paziente uremico: dalla teoria alla pratica.

The rate of fragile elderly patients affected by chronic kidney disease stage 5-5D is rapidly increasing. The decision making process regarding the start and the withdrawal of dialysis is often difficult for all those involved: patients, relatives, nephrologists and renal nurses. Therefore nephrologists and renal nurses are called to rapidly improve their theoretical and practical competence about the end-of-life care. The quality of clinical intervention and management requires a sound expertise in the ethical, legal, organizational and therapeutic aspects, not trivial nor even deductible from purely private and individual opinions nor from traditional medical practice. The present paper discusses the ethical and legal implications related to the start rather than to withdrawn from dialysis, preferring a non-dialysis medical treatment and / or palliative care. Operational aspects regarding the regional network of palliative care, the path of shared decision making process and a systematic approach to optimize medical and nursing interventions through the Liverpool Care Pathway program are discussed thereafter.

[Forgoing treatments: a kind of euthanasia? A scientific approach to the debate about end of life decisions]. / La limitazione dei trattamenti: una forma di eutanasia? Un approccio scientifico al dibattito sulle decisioni alla fine della vita.

In the last decade an extensive debate on the topic of end of life decisions has developed in western countries, obtaining a worldwide media relevance. Philosophers, theologians, legal experts and doctors, focus their attention on the three thorny issues of the topic: forgoing treatments, euthanasia and assisted suicide. A thorough and respectful discussion on these issues should include all stakeholders - above all palliative care physicians - and should be encouraged in order to understand the views in favor or against the three practices, checking the different moral positions, and analyzing the cultural, social and legal aspects in the background on one hand, and, on the other, their impact on the health care systems. At present, in the fields of communications and politics, the debate related to the topic of these end of life practices is characterized by a confusion of terms and meanings. As an outcome, the term "euthanasia" is misused as a "container" including forgoing treatments, euthanasia and assisted suicide, while palliative sedation is wrongly considered as a procedure to cause death. This confusing approach does not permit to understand the real issues at the stake, keeping the debate at the tabloid level. Conversely, sharing the precise meaning of the words is the only way to provide tools to make rational, autonomous and responsible decisions, allowing individual informed choices in compliance with the principle of autonomy. This article is not aimed to take a moral stand in favor or against forgoing treatments, euthanasia and assisted suicide. Through an analysis based on scientific criteria, the authors firstly review the definitions of these three practices, examining the concepts enclosed in each term; secondly, they offer a glance on the legal approach to end of life issues in western countries; lastly, they investigate the relationship between these practices and palliative care culture in light of the medical societies official statements. The authors chosen to examine the topic of forgoing treatments, euthanasia and assisted suicide from a scientific point of view, because the clinical approach, taking into account the biological context of disease related to the human and social domains, seems to be able to better gather all the aspects of end of life practices, providing useful information to deal with them also in a philosophical or juridical perspective.

[Part I. End-stage chronic organ failures: a position paper on shared care planning. The Integrated Care Pathway]. / Parte I. Il percorso clinico e assistenziale nelle insufficienze croniche d'organo "end-stage".Documento di consenso per una pianificazione condivisa delle scelte di cura.

In Italy the birth rate decrease together with the continuous improvement of living conditions on one hand, and the health care progress on the other hand, led in recent years to an increasing number of patients with chronic mono- or multi-organ failures and in an extension of their life expectancy. However, the natural history of chronic failures has not changed and the inescapable disease's worsening at the end makes more rare remissions, increasing hospital admissions rate and length of stay. Thus, when the "end-stage" get close clinicians have to engage the patient and his relatives in an advance care planning aimed to share a decision making process regarding all future treatments and related ethical choices such as patient's best interests, rights, values, and priorities. A right approach to the chronic organ failures end-stage patients consists therefore of a careful balance between the new powers of intervention provided by the biotechnology and pharmacology (intensive care), both with the quality of remaining life supplied by physicians to these patients (proportionality and beneficence) and the effective resources rationing and allocation (distributive justice). However, uncertainty still marks the criteria used by doctors to assess prognosis of these patients in order to make decisions concerning intensive or palliative care. The integrated care pathway suggested in this position paper shared by nine Italian medical societies, has to be intended as a guide focused to identify end-stage patients and choosing for them the best care option between intensive treatments and palliative care.

[Part II. Scientific evidence in end-stage chronic organ failure. A position paper on shared care planning]. / Parte II. Evidenze scientifiche nelle insufficienze croniche d'organo "end-stage". Documento di consenso per una pianificazione condivisa delle scelte di cura.

The therapeutic options related to chronic organ failure are interconnected to the variability of human biological responses and the personal history and choices of the chronically ill patient on one hand, and with the variable human answers to therapies on the other hand. All these aspects may explain the small number and low quality of studies aimed to define the clinical criteria useful in identifying end-stage chronically ill patients, as highlighted through the 2012-2013 Medline survey performed by the task force. These results prevented the grading of scientific evidence. However, taking into account the evidence based medicine definition, the task force believes the clinical reasoning and the individual experience of clinicians as well as the patients and families preferences cannot be replaced "tout court" with a strict methodological research. Accordingly, the working method selected by the task force members was to draw up a set of clinical parameters based on the available scientific literature, submitting it to a peer review process carried out by an expert panel. This paper discusses a set of clinical parameters included in the clinical decision-making algorithm and shared by nine medical societies. For each chronic organ failure these clinical parameters should be intended not as a rigid cutoff system to make a choice between two selected care options (intensive vs palliative), rather as the starting point for a joint and careful consideration regarding the opportunity to adopt the clinical decision-making algorithm care proposed in Part I.

[From treatment to palliative care: difficult news in oncology]. / Dal trattamento oncologico alle cure palliative: i momenti difficili della comunicazione.

The transition from oncological treatment to palliative care represents one of the most difficult moments in communicating bad news to patients. Even the most experienced doctor can feel profoundly affected when facing these moments.