Life at the end of life: beliefs about individual life after death and "good death" models - a qualitative study

BACKGROUND: Different ideas of "good death" may influence the effectiveness of end-of-life care in patients with different ethos. This study aimed to identify the influence of believing in individual life after death on "good death" models. METHODS: Semi structured-interview to 8 persons, 4 believers and 4 non-believers in individual life after death from the general Italian population. Analysis of the transcribed text according to the method suggested by Mc Cracken. RESULTS: The analysis has shown a diverse and coherent conceptualization of death according to whether the subjects believe or not in individual life after death. Believers, for whom death marks the passage to a new dimension, prefer to be unaware of dying, while non-believers, for whom death is the end of the individual, prefer to be conscious until the very end of life. However some important aspects in common have been identified, i.e. having close people nearby, receiving assistance from experts, or the preference for a soft atmosphere around the dying person. CONCLUSION: There are aspects in common and aspects in contrast between believers and non-believers in individual life after death: while sharing many aspects of what a "good death" ought to be, they have opposite stands on being aware of dying. A plurality of models should be foreseen, accepting, in this case, their practical and theoretical implications

An increasing number of qualitative research papers in oncology and palliative care: does it mean a thorough development of the methodology of research?

BACKGROUND: In the second half of the nineties, a scientific debate about the usefulness of qualitative research in medicine began in the main medical journals as well as the amount of "qualitative" papers published on peer reviewed journals has noticeably increased during these last years. Nevertheless the label of qualitative methodology has been assigned to an heterogeneous collection of studies. Some of them show a complete awareness of the specificity of this kind of research, while others are still largely influenced by the quantitative paradigm prevailing in the medical field. The concern with the rigour and credibility of qualitative methods has lead to the development of a number of checklist for assessing qualitative research. The purposes of this review were to describe the quality of the development of qualitative research in the medical field, focusing on oncology and palliative care, and to discuss the applicability of a descriptive checklist. METHODS: A review was conducted on Medline and PsycINFO databases. On the basis of their abstract, papers found have been classified considering: publication year, kind of journal, paper type, data gathering method, sample size and declared methodological approach. A sub sample of the previous papers was than selected and their methodological characteristics were evaluated based on a descriptive checklist. RESULTS: 351 abstracts and 26 full papers were analysed. An increase over time in the number of qualitative studies is evident. While most of the papers before 1999 were published on nursing journals (43%), afterwards also medical journals were largely represented. Psychological journals increased from 7% to 12%. The 22% of studies used a sample size lower than 15 and the 15% did not specify the sample size in the abstract. The methodological approach was also often not specified and the percentage increased in the second time period (from 73% to 80%). Grounded theory was the most employed methodological approach while phenomenology shows a decrease. Interview remains the most used data gathering method in both periods, even if it shows a 10% reductions, while focus group and multiple methods application both increase to 12%. The use of the descriptive checklist on the full text of the 26 papers shows that all the items present a larger percentage of satisfaction after 1 January 1999 than it was for the paper published before 1999. There seems to be two different types of quality criteria: specific and unspecific. The first ones mainly refer to qualitative paradigm (such as the relationship with the subject of research or evidence about how subjects perceived the research) and they are often not satisfied. In contrast unspecific criteria (such as the connection to an existing body of knowledge or systematic data gathering) which are mainly shared with the quantitative paradigm are more frequently satisfied. CONCLUSIONS: In oncology and palliative care the publication of qualitative studies increased during the nineties, reaching its peak in around 2000. The use of descriptive checklists even if it was not easy to apply, allows researchers to get a deeper insight into methodological facets that a global judgement may leave out

Intentionally hastening death by withholding or withdrawing treatment

Zusammenfassung: ZWECK: Diese Arbeit soll empirische Daten zur Absicht des Arztes beim Behandlungsverzicht und -abbruch liefern und deren mögliche Bedeutung für die ethische Debatte diskutieren. METHODIK: Die präsentierten Daten basieren auf EURELD, einem breit angelegten Forschungsprojekt zur Erfassung medizinischer Entscheidungen am Lebensende in sechs europäischen Ländern. Ausgehend von einer fortlaufenden Zufallsstichprobe von Todesfallformularen war der zuständige Arzt anonym schriftlich zu den am Lebensende des Verstorbenen getroffenen Entscheidungen befragt worden. ERGEBNISSE: In allen sechs Ländern zusammengenommen gaben die befragten Ärzte in 45% aller Fälle von Behandlungsverzicht oder -abbruch am Lebensende eine ausdrückliche Absicht zur Beschleunigung des Todeseintrittes an. Höher als der Durchschnitt war dieser Prozentsatz in der Schweiz und in Schweden (52% resp. 51%), tiefer in Dänemark und Belgien (36% resp. 38%), im Mittelfeld lagen Italien und Holland (42% resp. 45%). Insgesamt war der Entscheid zum Verzicht oder Abbruch einer Dialyse oder einer Beatmung besonders häufig mit einer ausdrücklichen Absicht zur Beschleunigung des Todeseintrittes verbunden (57% resp. 54%), der Verzicht oder Abbruch von Krebstherapien besonders selten (34%). SCHLUSSFOLGERUNGEN: Ärztliche Entscheidungen zum Behandlungsverzicht oder -abbruch am Lebensende erfolgen in fast der Hälfte der Fälle mit der ausdrücklichen Absicht einer Beschleunigung des Todeseintrittes. Es findet sich keine klare Assoziation zwischen der ausdrücklichen Absicht zur Beschleunigung des Todeseintrittes und objektiven Merkmalen des jeweiligen Behandlungsabbruches oder -verzichtes wie der Wahrscheinlichkeit resp. dem Ausmaß eines lebensverkürzenden Effekts, der Unmittelbarkeit des Todeseintritts oder der zu erwartenden Belastung durch die mögliche lebenserhaltende Maßnahme. Diese Resultate wecken Zweifel an der Brauchbarkeit des Kriteriums der ärztlichen Absicht bei der moralischen Beurteilung von Entscheidungen zum Behandlungsverzicht und -abbruc

Home death for children dying in six European countries

Aim: Guidelines on pediatric palliative care underline that care at the end of life of chronically ill children should preferably be provided in the child’s home situation. Till present, no European data at population level are available for place of death of children. The aim of this study was to compare proportions of home death for children in six European countries and investigate relation between place of death and sociodemographic and clinical factors. Method: Data were collected from death certificates of all deceased children aged 1-17 in Belgium (BE), the Netherlands (NL), Norway (NO), England (E), Wales (W) (2003) and Italy (IT) (2002). Gender, cause (cancer, natural non-cancer and external) and place of death (home vs. outside home) and sociodemographic factors (socio-economic status (SES), degree of urbanization and number of hospital beds in the area) were included in the analyses. Data were analyzed using frequencies and multivariate logistic regression. Results: A total of 3.187 deaths were included in the analyses, 534 (16,8%) died from cancer. The proportion of home deaths was 19,6% (IT), 20,5% (E), 20,6% (W), 21,0% (NO), 23,8% (BE) and 28,6% (NL). Home death was more likely for children dying from cancer in BE, NL, E and W, for children with high SES in BE, in areas with low number of hospital beds in IT, and for boys in NL. Conclusion: The proportion of home deaths for children differs between studied countries. In most, but not all, countries children dying from cancer had better odds of dying at home than those not dying from cancer. Although acknowledging the influence of culture in the differences, studying care provisions in countries with higher proportions of home deaths, particularly in chronically ill children, can be helpful to identify factors facilitating terminally ill children to die at home. Early involvement of palliative care and equal access to these services can be important in this context. Funding: IWT-Flanders

Comparison of multi-state Markov models for cancer progression with different procedures for parameters estimation. An application to breast cancer

Background: the knowledge of sojourn time (the duration of the preclinical screen-detectable period) and screening test sensitivity is crucial for understanding the disease progression and the effectiveness of screening programmes. For this purpose a model of the natural history of the disease is needed. The aim of this work is to provide an illustration of the application of multistate Markov models for breast cancer progression to the data of the Florentine screening programme, in order to estimate the sojourn time and sensitivity for breast cancer screening. Methods: three different multi-state Markov models of increasing complexity were used with three different estimation procedures based on non-linear least squares, maximum likelihood, and on a Bayesian approach. All the models produced estimates for screening sensitivity and mean sojourn time. The data used in our application seem to lead to a non-identifiability problem, since the estimation procedures for both the Maximum Likelihood and Non-Linear Least Squares gave estimates that changed with the parameters’ initial values or difficultly converged. In order to take this problem into account we used the Bayesian Approach by incorporating prior information on all the parameters. Results: the mean sojourn time varied between 2-7 years and 3-5 years for women aged 50-59 and 60-69, respectively. When the model complexity was increased a higher variability in estimates was observed among the estimation procedures. The results of the screening sensitivity estimates were highly variable, both among estimation techniques and models - varying between 63% and 100%, and between 77% and 100% for women aged 50-59 and 60-69, respectively. Conclusions: results are in accord with the literature; those obtained through the Bayesian Approach seem to be more reliable.&nbsp

Do you agree with the doctor’s decision to continue treatment? A scenario-based study of hospital nurses in Italy

Introduction. A lack of social consensus on the duty to comply with a patient’s request to forgo treatment was reported in Italy, but little is known about the nurses’ attitudes regarding this issue. Materials and methods. Questionnaire including two clinical scenarios regarding doctor’s decision to not comply with a competent patient’s request to forgo treatment was administered to all nurses (n=487) of an Italian medium-sized hospital. Results. Eighty-five percent of nurses completed the study. Although 83% of participants supported a general right to self-determination, around 40% of them agreed with the doctor’s decision in both scenarios. The multivariate analyses adjusted for gender, age, length of professional experience, and care setting showed that the agreement with the doctor’s decision was significantly associated with nurses’ personal background beliefs about self-determination and quality of life. Discussion and Conclusions. Many nurses have difficulty in accepting a patient’s request to forgo treatment. Increasing ethical reflection and discussion at both educational and professional level, and introducing ethical consultation services would be essential to develop a consistent approach to end-of-life decisions in Italian hospitals.

Psychological well-being and quality of life in visually impaired baseball players: An Italian national survey

Italian baseball played by visually impaired and blind athletes is an adapted team sport which maintains the peculiar fast-moving features of this popular sport. It is also a mixed team game played together with sighted subjects. Here, we performed a national survey aimed at assessing the differences in psychological well-being (PWB) and quality of life (QoL) between visually impaired baseball players from Italian teams and non-players using a structured online questionnaire. Forty-three visually impaired baseball players and thirty-four visually impaired sedentary individuals completed a structured self-report survey including the validated 18-item Italian versions of the PWB (PWB-18) scale and the Short Form-12 (SF-12) questionnaire to assess the QoL. PWB-18 and SF-12 reference data from the Italian normally sighted population were also employed for comparison with the visually impaired baseball player group. Visually impaired baseball players reported better scores in all dimensions of the PWB-18 scale and significant higher scores in both physical and mental QoL evaluated by SF-12 than the non-player group. In addition, PWB-18 scale findings revealed significant differences between visually impaired baseball players and the reference normally sighted population consisting in lower scores for autonomy, environmental mastery, positive relations with others and purpose in life dimensions. Conversely, the mean scores for PWB-18 personal growth and self-acceptance dimensions were not significantly different between the two groups. The SF-12 questionnaire results demonstrated a significantly higher physical score in visually impaired players compared with the reference population. Instead, the SF-12 mental score of visually impaired athletes tended to be lower, though this difference was not statistically significant. Collectively, our findings suggest that the practice of Italian baseball may have a positive impact on PWB and QoL of visually impaired individuals

Quality of primary palliative care for older people with mild and severe dementia : an international mortality follow-back study using quality indicators

Background: measuring the quality of primary palliative care for older people with dementia in different countries is important to identify areas where improvements can be made. Objective: using quality indicators (QIs), we systematically investigated the overall quality of primary palliative care for older people with dementia in three different countries. Design/setting: a mortality follow-back survey through nation-and region-wide representative Sentinel Networks of General Practitioners (GPs) in Belgium, Italy and Spain. GPs registered all patient deaths in their practice. We applied a set of nine QIs developed through literature review and expert consensus. Subjects: patients aged 65 or older, who died non-suddenly with mild or severe dementia as judged by GPs (n = 874). Results: findings showed significantly different QI scores between Belgium and Italy for regular pain measurement (mild dementia: BE = 44%, IT = 12%, SP = 50% | severe dementia: BE = 41%, IT = 9%, SP = 47%), acceptance of approaching death (mild: BE = 59%, IT = 48%, SP = 33% | severe: BE = 41%, IT = 21%, SP = 20%), patient-GP communication about illness (mild: BE = 42%, IT = 6%, SP = 20%) and involvement of specialised palliative services (mild: BE = 60%, IT = 20%, SP = 77%). The scores in Belgium differed from Italy and Spain for patient-GP communication about medical treatments (mild: BE = 34%, IT = 12%, SP = 4%) and repeated multidisciplinary consultations (mild: BE = 39%, IT = 5%, SP = 8% | severe: BE = 36%, IT = 10%, SP = 8%). The scores for relative-GP communication, patient death outside hospitals and bereavement counselling did not differ between countries. Conclusion: while the countries studied differed considerably in the overall quality of primary palliative care, they have similarities in room for improvement, in particular, pain measurement and prevention of avoidable hospitalisations

Responders and non-responders in a study on medical end-of-life decisions in Denmark, the Netherlands, Sweden and Switzerland

Summary.: Objectives: To determine the direction and magnitude of participation bias in end-of-life research. Methods: Within the framework of a European survey on medical end-of-life decisions, a non-response study was conducted among physicians in Denmark, the Netherlands, Sweden and Switzerland. People were asked about their attitudes and experiences in the area of medial end-of-life decision. The response rates ranged from 12.8% (Netherlands) to 39.4% (Switzerland). The responders (n = 5 403) and the non-responders (n = 866) were compared regarding socio-demographic characteristics, experiences with terminal patients and agreement with attitudes towards "end-of-life decisions”. The reasons for non-participation to the study were analyzed. Results: Non-response did not cause socio-demographic distortion, but non-responders had statistically significantly fewer terminal patients than responders. Agreement rates were statistically significantly higher among responders than among non-responders for euthanasia, non-treatment decision and life-preserving statements. Neutral answers were statistically significantly more frequent among non-responders than among responders for life-preserving and euthanasia statements. The most commonly mentioned reason for non-participation was "lack of time”. Conclusion: Non-participation does cause an overestimation of proponents of life-shortening, as well as of life-preserving end-of-life decisions. Non-responders more often have ambiguous attitudes towards end-of-life decisions than responder

Primary palliative care for older people in three European countries : a mortality follow-back quality study

Background Many older people with serious chronic illnesses experience complex health problems for which palliative care is indicated. We aimed to examine the quality of primary palliative care for people aged 65-84 years and those 85 years and older who died non-suddenly in three European countries. Methods This is a nationwide representative mortality follow-back study. General practitioners (GPs) belonging to epidemiological surveillance networks in Belgium (BE), Italy (IT) and Spain (ES) (2013-2015) registered weekly all deaths in their practices. We included deaths of people aged 65 and excluded sudden deaths judged by GPs. We applied a validated set of quality indicators. Results GPs registered 3496 deaths, of which 2329 were non-sudden (1126 aged 65-84, 1203 aged 85+). GPs in BE (reference category) reported higher scores than IT across almost all indicators. Differences with ES were not consistent. The score in BE particularly differed from IT on GP-patient communication (aged 65-84: 61% in BE vs 20% in IT (OR=0.12, 95% CI 0.07 to 0.20) aged 85+: 47% in BE vs 9% in IT (OR=0.09, 95% CI 0.05 to 0.16)). Between BE and ES, we identified a large difference in involvement of palliative care services (aged 65-84: 62% in BE vs 89% in ES (OR=4.81, 95% CI 2.41 to 9.61) aged 85+: 61% in BE vs 77% in ES (OR=3.1, 95% CI 1.71 to 5.53)). Conclusions Considerable country differences were identified in the quality of primary palliative care for older people. The data suggest room for improvement across all countries, particularly regarding pain measurement, GP-patient communication and multidisciplinary meetings