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Iasevoli, Mario (2013) Decisioni ed opinioni nel fine vita: confronto tra i diversi professionisti coinvolti nell'assistenza al paziente. Lo studio pilota E.L.D.Y. [Tesi di dottorato]

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Abstract (inglese)

Background: For a long time the approach of clinicians towards death has focused only on the pathological process of the organ dysfunction, while the clinical practice has revealed a more holistic and multi-dysfunctional nature of death, as a biological, psychological and social process engaging the individual as a whole. In developed countries, moreover, the causes that lead to death are widely changed: today chronic and degenerative diseases are prevailing with an increase in people dying in intensely medicalized conditions or in morbid terminal conditions, related to the continuous progress in medical technology and to the increased life expectancy. Consequently, what concerns the end of life is still a source of many ethical issues and uncertainties in taking the decisions in clinical practice, especially in the suspension or abstention of a treatment. The multidisciplinary reflection on these issues has led to a large increase in the interest of numerous national and international researchers towards the end of life, pointing out a growing change in the common thought and a difference of approach to these issues by Italian physicians and professionals than their European and/or American colleagues. The literature shows a lack of data linked to the geriatric field, especially in Italy.
Aims: The main purposes of the research called ELDY (End of Life Decisions studY) were: 1) to study the frequency and the typology of the decisions taken - by physicians and nurses working in geriatrics - in the clinical practice and in the life terminal phase of patients. 2) to investigate the end of life decisions-making opinions’ by physicians and other social health workers (employed in the elderly assistance). 3) to compare the achieved results with those of analogous studies done in National and European context. The secondary purposes consisted of: 4) detecting the potential relationships among the different attitudes towards end of life decisions and some cultural and working characteristics of the staff involved in the assistance of the elderly. 5) Formulating and judging the reliability of a more appropriate questionnaire for the Italian context, intended to analyze all the possible decisions and opinions that physician (or other health workers) could take in the final stage of the patient’s life.
Materials and Methods: By means of a complex interdisciplinary work, which took into account the criticisms of previous national and international studies, a new evaluation questionnaire was developed and then sent to about 5000 doctors, nurses, health workers, psychologists and other staff employed in elderly patients assistance units in Veneto and Trentino Alto-Adige. It was also created a special website in which it was possible to fill in or download the material. The questionnaire was divided into three parts: the first part (Q1) was addressed only to physicians and nurses, concerning the last death that they attended; the second one (Q2) was referred to health workers, regarding their convictions and opinions about the end of life decisions; the last part (Q3) was designed to identify some general features of the professional.
Results: The number of respondents was 1051 social and health workers: 205 physicians (MD), 508 registered nurses (RN), 173 healthcare workers (HW), 106 psychologists (PSY), and 59 of other personnel working in the involved structures. The questionnaires that met the selection criteria for the statistical analysis were 633 about the end-of-life decisions and 990 about the opinions stated: it is observed that 97% of doctors and nurses state that they have never intervened directly and intentionally to anticipate the end of life.
It was found: two cases of euthanasia were reported (MD: 1 and IP: 1); twelve cases reported the termination of life without explicit request of the patient (MD: 2 and RN: 10); two cases of intentional medically assisted death, without, however, specifying who was the acting subject (patient, physician, nurse, other); cases of doctor-assisted suicide did not emerge. The 54.6% of respondents stated that they had started or had not stopped a treatment, taking into account the possibility that this act would have extended the life of the patient; otherwise the 21% claimed to have not withhold or withdrawal a treatment, taking into account the possibility, or with the clear intention, that this act could have anticipated the death of patients already in end-stage. About the opinions towards end-of-life decisions: only a lower number of professionals agrees on the principle of unavailability of life (MD: 31.4%, RN: 21%, HW: 32.4%, PSY: 13.5%), while the majority of respondents supports the “right to decide” to anticipate the end of life (MD: 46.1%, RN: 59.1%, HW: 59.3%, PSY: 61%) and takes into account the possibility not to implement or discontinue life-sustaining treatments (MD: 74.5%, RN: 79%, HW: 75.1%, PSY: 88.5%). Substantially concurring opinions among the various professionals have emerged regarding the appointment of a trustee to make decisions to anticipate the end of life if the patient is not in full possession of his faculties (MD: 79.9%, RN: 76.4%, HW: 73.1%, PSY: 88.6 %) and to draft the directives in advance on non-implementation or termination of life-sustaining treatments (MD: 60.5%, RN: 61.3%, HW: 64.9.%, PSY: 72.1%). A large majority of professionals also agrees on the value for the end-of-life decisions for an interdisciplinary approach based on not only medical and nursing figures (MD: 82%, RN: 83.9%, HW: 76.3%, 96.2% PSY).
Conclusions: 1) Both physicians and nurses assume decisions with the possibility, or the intention, to hasten the end of life. 2) Many different professionals agreed on, for example: the principle of availability of human life, the importance of appointing a trustee in the case of non-competence, of involving relatives in the decision-making process, in order to satisfy the no-treatment request and to respect the advanced directives, the importance of pain relief, quality of life, respect the dignity and determination in assisting the patient in the terminal phase. Contrasting opinions emerged, however, about the practice of euthanasia. 3) Some interesting data that agree with the previous studies seem to confirm the reliability of the emerged answers of our study and an approach of the Italian physicians to the European colleagues both on the practices and on the opinions regarding the end life decisions. 4) The non-medical health professionals are more likely to the principle of self-determination of the patient, the possibility of allowing the use of drugs in lethal doses and to the delegation of decisions to be made by relatives in the terminal stages of life if not competent. Among the doctors who claimed to be in agreement with the statement that life is an unavailable value and there is no "right to die", no one has implemented a form of medically assisted death, and vice versa, more than half of those who disagreed took over a decision to end life in their last death assisted. 5) Between the Italian and European doctors and among the various professionals involved in the study it seems that a disagreement exists about the communicative approach the end of life. 6) Observing the high percentage of interest, the request for in-depth study of these issues and the number of respondents to the various questionnaire parties, we can consider as reached the target of elaborating a new instrument useful for investigating effectively bioethical issues of end-of-life decisions among the professionals employed in geriatrics. This questionnaire could become useful to monitor the development of stances and practices in physicians and other health workers. Finally, it can be extended beyond the field of geriatrics, to a national as well as international level

Abstract (italiano)

Background: Per molto tempo l'™orientamento dei clinici nei confronti della morte si è incentrato sul solo processo patologico della disfunzione d'™organo, mentre la pratica clinica rivela sempre più la natura olistica e multidisfunzionale della morte, da intendere non solo in termini di processo biologico, ma anche psicologico e sociale coinvolgente l'™individuo nella sua globalità . Nei paesi sviluppati, inoltre, le cause che portano al decesso sono ampiamente mutate: prevalgono oggi le patologie croniche e degenerative con un aumento di persone che giungono al decesso in condizioni ampiamente medicalizzate o in stato morboso terminale protratto correlato agli avanzamenti della tecnologia medica e alla maggiore aspettativa di vita. Quindi ciò che accade negli ultimi frangenti della vita è ancora oggi origine di numerose questioni etiche ed incertezze nelle decisioni che vanno assunte nella pratica clinica, in particolare nella sospensione o astensione di un trattamento. La riflessione multidisciplinare su tali problemi ha portato ad un forte aumento dell'™interesse verso il fine vita di numerosi ricercatori nazionali ed internazionali, evidenziando una crescente modifica del pensiero comune ed una differenza di approccio a tali argomenti da parte di medici e professionisti italiani rispetto ai colleghi europei e/o americani. In letteratura sono esigui i lavori in ambito geriatrico, in particolar modo in Italia.
Scopi: Gli obiettivi primari dello studio ELDY (End of Life Decisions studY) erano: 1) studiare la frequenza e la tipologia delle decisioni assunte da Medici ed Infermieri coinvolti nel campo geriatrico nella pratica clinica durante la fase terminale della vita dei pazienti; 2) indagare le opinioni riguardanti le decisioni di fine vita dei Medici e del rimanente personale socio-sanitario impegnato nell'™assistenza al paziente anziano; 3) confrontare i risultati ottenuti con lavori similari condotti nel contesto europeo ed italiano. Gli obiettivi secondari erano: 4) individuare le potenziali associazioni esistenti tra le diverse opinioni riguardo le decisioni di fine vita e talune caratteristiche culturali e lavorative dei professionisti; 5) realizzare e valutare la validità di un nuovo questionario più adeguato al contesto italiano, pensato per indagare le opinioni e le decisioni di fine vita assunte dai professionisti nell'™assistenza al paziente terminale.
Materiali e Metodi: E' stato elaborato un nuovo questionario di valutazione, mediante un articolato lavoro interdisciplinare che ha tenuto in considerazione le critiche rivolte a precedenti studi nazionali ed internazionali, e successivamente inviato a circa 5000 tra Medici, Infermieri, Operatori Socio-Sanitari, Psicologi e altro personale delle unità operative di assistenza al paziente anziano del Veneto e Trentino Alto-Adige. Inoltre è stato realizzato un apposito sito internet per compilare o scaricare il materiale. Il questionario era costituito da tre parti: la prima (Q1) compilabile solo da Medici e Infermieri e riguardante le decisioni assunte in riferimento all'™ultimo decesso cui il professionista ha assistito; la seconda parte (Q2) destinata a tutto il personale socio-sanitario, volta ad indagare le opinioni e le convinzioni in merito alle decisioni di fine vita; la terza parte (Q3) era adibita ad identificare alcune caratteristiche generali del professionista.
Risultati: Hanno risposto al questionario 1051 professionisti socio-sanitari: 205 Medici (MD), 508 Infermieri (IP), 173 Operatori Socio-Sanitari (OSS), 106 Psicologi (PSY) e 59 di altro personale. I questionari che rispondevano ai criteri di selezione per l'™analisi statistica erano 633 per quanto riguarda le decisioni assunte e 990 per quanto riguarda le opinioni dichiarate. Relativamente alle decisioni assunte: il 97% dei medici ed infermieri afferma di non essere intervenuto in maniera diretta ed intenzionale per anticipare la fine della vita. Sono stati dichiarati: 2 casi di eutanasia (MD: 1 e IP: 1); 12 casi di soppressione della vita senza esplicita richiesta del paziente (MD: 2 e IP: 10); 2 casi di decesso in seguito ad atti compiuti con l'™esplicita intenzione di anticipare la fine della vita senza specificare, però, chi fosse il soggetto agente (paziente, medico, infermiere o altro); nessun caso di suicidio medicalmente assistito. Il 53.2% dei rispondenti ha affermato di aver iniziato o non interrotto un trattamento, tenendo in considerazione la possibilità che questo atto potesse prolungare la vita del paziente; il 21.2%, invece, ha dichiarato di non aver iniziato o di aver interrotto un trattamento tenendo in considerazione la possibilità oppure con l'™intenzione precisa che questo atto potesse anticipare la morte del paziente già in fase terminale. Per quanto riguarda invece le opinioni: solo una minor parte dei professionisti concorda con principio dell'™indisponibilità della vita (MD: 31.4%, IP: 21%, OSS: 32.4%, PSY: 13.5%), mentre la maggior parte dei rispondenti è favorevole al "diritto del paziente di decidere" sulla possibilità di anticipare la fine della vita (MD: 46.1%, IP: 59.1%, OSS: 59.3%, PSY: 61%) e sulla possibilità di non attuare o di interrompere trattamenti di sostegno vitale (MD: 74.5%, IP: 79%, OSS: 75.1%, PSY: 88.5%). Pareri sostanzialmente concordanti tra i vari professionisti sono emersi, in caso di paziente non competente, in merito alla nomina di un fiduciario per assumere decisioni di anticipare la fine della vita (MD: 79.9%, IP: 76.4%, OSS: 73.1%, PSY: 88.6%) e alla predisposizione di direttive anticipate relative alla non attuazione o interruzione di trattamenti di sostegno vitale (MD: 60.5%, IP: 61.3%, OSS: 64.9.%, PSY: 72.1%). Un'ampia maggioranza di professionisti, inoltre, concorda con l'utilità nelle decisioni di fine vita di un approccio interdisciplinare in cui siano presenti non solo figure mediche e infermieristiche (MD: 82%, IP: 83.9%, OSS: 76.3%, PSY 96.2%).
Conclusioni: 1) Sia medici che infermieri assumono decisioni con la possibilità o con l'™intenzione di anticipare la fine della vita. 2) I differenti professionisti presentano pareri concordanti per quanto riguarda, ad esempio: il principio della disponibilità della vita umana, l'™importanza di nominare un fiduciario in caso di non competenza, il coinvolgimento dei familiari nel processo decisionale, il soddisfare la richiesta di non trattamento e di rispettare le dichiarazioni anticipate, l'™importanza del sollievo del dolore, della qualità di vita, del rispetto della dignità e volontà del paziente terminale. Pareri discordanti presentano, invece, in merito alle pratiche eutanasiche. 3) Alcune rilevanti concordanze con lavori precedenti sembrano avvalorare le risposte da noi riscontrate e confermare un avvicinamento dei medici italiani ai colleghi europei, sia sulle pratiche, che sulle opinioni di fine vita. 4) Il personale sanitario non medico si dimostra più favorevole al principio dell'™autodeterminazione del paziente, alla delega ai parenti delle decisioni da assumere nelle fasi terminali della vita in caso di non competenza e alla possibilità di consentire l'™uso di farmaci in dosi letali. Tra i medici d'™accordo che la vita è un bene indisponibile e non esiste un "diritto a morire", nessuno ha attuato una forma di morte medicalmente assistita, viceversa, più della metà di chi non lo era ha poi dichiarato di aver attuato una decisione di fine vita nell'™ultimo decesso seguito. 5) Sembrano esistere discordanze tra i medici italiani ed europei e tra i vari professionisti coinvolti nello studio in merito all'™approccio comunicativo nel fine vita. 6) Alla luce delle elevate percentuali d'™interesse, delle ulteriori richieste di approfondimento di tali temi e del numero di rispondenti, si può ritenere raggiunto l'obiettivo che prevedeva l'™elaborazione di un nuovo strumento utile ad esplorare efficacemente le questioni bioetiche inerenti il fine vita tra i professionisti coinvolti nel campo geriatrico. Esso può divenire un mezzo utile per monitorare l'andamento delle opinioni e delle pratiche del personale medico e non. Infine potrebbe essere estendibile oltre il campo geriatrico, a livello nazionale ed internazionale

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Tipo di EPrint:Tesi di dottorato
Relatore:Manzato, Enzo
Data di deposito della tesi:23 Gennaio 2013
Anno di Pubblicazione:23 Gennaio 2013
Parole chiave (italiano / inglese):Decisioni e opinioni di fine vita/End of Life decision-making
Settori scientifico-disciplinari MIUR:Area 06 - Scienze mediche > MED/09 Medicina interna
Struttura di riferimento:Dipartimenti > Dipartimento di Scienze Cardiologiche, Toraciche e Vascolari
Codice ID:5441
Depositato il:16 Ott 2013 09:54
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