Trends and Patterns in the Public Awareness of Palliative Care, Euthanasia, and End-of-Life Decisions in 3 Central European Countries Using Big Data Analysis From Google: Retrospective Analysis

Background End-of-life decisions, specifically the provision of euthanasia and assisted suicide services, challenge traditional medical and ethical principles. Austria and Germany have decided to liberalize their laws restricting assisted suicide, thus reigniting the debate about a meaningful framework in which the practice should be embedded. Evidence of the relevance of assisted suicide and euthanasia for the general population in Germany and Austria is limited. Objective The aim of this study is to examine whether the public awareness documented by search activities in the most frequently used search engine, Google, on the topics of palliative care, euthanasia, and advance health care directives changed with the implementation of palliative care services and new governmental regulations concerning end-of-life decisions. Methods We searched for policies, laws, and regulations promulgated or amended in Austria, Germany, and Switzerland between 2004 and 2020 and extracted data on the search volume for each search term topic from Google Trends as a surrogate of public awareness and interest. Annual averages were analyzed using the Joinpoint Regression Program. Results Important policy changes yielded significant changes in search trends for the investigated topics. The enactment of laws regulating advance health care directives coincided with a significant drop in the volume of searches for the topic of euthanasia in all 3 countries (Austria: −24.48%, P=.02; Germany: −14.95%, P<.001; Switzerland: −11.75%, P=.049). Interest in palliative care increased with the availability of care services and the implementation of laws and policies to promote palliative care (Austria: 22.69%, P=.01; Germany: 14.39, P<.001; Switzerland: 17.59%, P<.001). The search trends for advance health care directives showed mixed results. While interest remained steady in Austria within the study period, it increased by 3.66% (P<.001) in Switzerland and decreased by 2.85% (P<.001) in Germany. Conclusions Our results demonstrate that legal measures securing patients’ autonomy at the end of life may lower the search activities for topics related to euthanasia and assisted suicide. Palliative care may be a meaningful way to raise awareness of the different options for end-of-life care and to guide patients in their decision-making process regarding the same.

Trends and Patterns in the Public Awareness of Palliative Care, Euthanasia, and End-of-Life Decisions in 3 Central European Countries Using Big Data Analysis From Google: Retrospective Analysis (Preprint)

BACKGROUND End-of-life decisions, specifically the provision of euthanasia and assisted suicide services, challenge traditional medical and ethical principles. Austria and Germany have decided to liberalize their laws restricting assisted suicide, thus reigniting the debate about a meaningful framework in which the practice should be embedded. Evidence of the relevance of assisted suicide and euthanasia for the general population in Germany and Austria is limited. OBJECTIVE The aim of this study is to examine whether the public awareness documented by search activities in the most frequently used search engine, Google, on the topics of <i>palliative care, euthanasia</i>, and <i>advance health care directives</i> changed with the implementation of palliative care services and new governmental regulations concerning end-of-life decisions. METHODS We searched for policies, laws, and regulations promulgated or amended in Austria, Germany, and Switzerland between 2004 and 2020 and extracted data on the search volume for each search term topic from Google Trends as a surrogate of public awareness and interest. Annual averages were analyzed using the Joinpoint Regression Program. RESULTS Important policy changes yielded significant changes in search trends for the investigated topics. The enactment of laws regulating advance health care directives coincided with a significant drop in the volume of searches for the topic of euthanasia in all 3 countries (Austria: −24.48%, <i>P</i>=.02; Germany: −14.95%, <i>P</i><.001; Switzerland: −11.75%, <i>P</i>=.049). Interest in palliative care increased with the availability of care services and the implementation of laws and policies to promote palliative care (Austria: 22.69%, <i>P</i>=.01; Germany: 14.39, <i>P</i><.001; Switzerland: 17.59%, <i>P</i><.001). The search trends for advance health care directives showed mixed results. While interest remained steady in Austria within the study period, it increased by 3.66% (<i>P</i><.001) in Switzerland and decreased by 2.85% (<i>P</i><.001) in Germany. CONCLUSIONS Our results demonstrate that legal measures securing patients’ autonomy at the end of life may lower the search activities for topics related to euthanasia and assisted suicide. Palliative care may be a meaningful way to raise awareness of the different options for end-of-life care and to guide patients in their decision-making process regarding the same.

Provider Perspectives on Advance Care Planning Documentation in the Electronic Health Record: The Experience of Primary Care Providers and Specialists Using Advance Health-Care Directives and Physician Orders for Life-Sustaining Treatment

Context: Advance care planning (ACP) is valued by patients and clinicians, yet documenting ACP in an accessible manner is problematic. Objectives: In order to understand how providers incorporate electronic health record (EHR) ACP documentation into clinical practice, we interviewed providers in primary care and specialty departments about ACP practices (n = 13) and analyzed EHR data on 358 primary care providers (PCPs) and 79 specialists at a large multispecialty group practice. Methods: Structured interviews were conducted with 13 providers with high and low rates of ACP documentation in primary care, oncology, pulmonology, and cardiology departments. The EHR problem list data on Advance Health Care Directives (AHCDs) and Physician Orders for Life-Sustaining Treatment (POLST) were used to calculate ACP documentation rates. Results: Examining seriously ill patients ≥65 years with no preexisting ACP documentation seen by providers during 2013 to 2014, 88.6% (AHCD) and 91.1% (POLST) of 79 specialists had zero ACP documentations. Of 358 PCPs, 29.1% (AHCD) and 62.3% (POLST) had zero ACP documentations. Interviewed PCPs often believed ACP documentation was beneficial and accessible, while specialists more often did not. Specialists expressed more confusion about documenting ACP, whereas PCPs reported standard clinic workflows. Problems with interoperability between outpatient and inpatient EHR systems and lack of consensus about who should document ACP were sources of variations in practices. Conclusion: Results suggest that providers desire standardized workflows for ACP discussion and documentation. New Medicare reimbursement for ACP and an increasing number of quality metrics for ACP are incentives for health-care systems to address barriers to ACP documentation.

Care for the person, protection of health and respect for the will of the patient in Italy: support administration as a tool to jointly promote health and respect for autonomy in incompetent patients

In Italy, advance health care directives are a subject of considerable debate in both legal theory and practice. This debate focuses in partic- ular not only on the appropriateness of approving ad hoc statutory reg- ulations but also on the extent to which similar advance indications of a person’s wishes are applicable under the existing legal system, albeit in the absence of a law regulating them. The authors of this paper con- sider, in particular, guidelines relating to the possible use of the mech- anism of support administration (<em>amministrazione di sostegno</em>) (Law No. 6/2004) as a procedure to be used for the legal recognition of advance health care directives, particularly in the light of the legal pro- vision for the possible designation in advance of a support administra- tor by a beneficiary in anticipation of an eventual situation of incapac- ity. This underlines how the concept of health does not only exist in the abstract, but must be measured in relation to the particular patient in the particular situation and how beneficence and respect for auton- omy are both essential elements in the choices aimed at promoting the health and the wellbeing of its citizens.

L’attuale situazione giuridica in tema di Dichiarazioni Anticipate di Trattamento (DAT) nell’ambito del contesto europeo e delle singole legislazioni degli Stati europei

Il contributo offre un’analisi comparativa tra i diversi attuali approcci nei confronti delle direttive anticipate di trattamento (DAT) nel contesto europeo, analizzando la possibilità di raggiungere un maggior consenso sulla tematica tra i Paesi della Comunità Europea. Nel contesto dell’attuale dibattito relativo al ruolo, all’efficacia e alla inefficacia delle DAT, l’obiettivo di questo contributo è di presentare una visione complessiva dello stato giuridico attuale delle DAT nell’ambito del contesto europeo e delle singole legislazioni degli Stati europei. Attualmente, la situazione giuridica delle DAT nell’ambito dei singoli Stati europei si presenta assai variegata. A tal proposito, nel contributo si compie una classificazione tra quattro gruppi di Stati: 1. Stati che hanno approvato leggi specifiche, le quali prevedono che le DAT siano obbligatorie prima facie e che potrebbero essere disattese solo per cause di forza maggiore (Gran Bretagna, Austria, Spagna, Ungheria, Belgio, Paesi Bassi, Lussemburgo, Finlandia, Germania); 2. Stati dove normative specifiche sull’argomento sono state adottate negli ultimi anni, ma che hanno attribuito un mero valore consultivo alle DAT (Francia); 3. Paesi dove non esiste ancora una specifica legge in materia, ma dove è in programma di approvarne una nei prossimi anni (Svizzera, Italia); 4. Stati dove non è ancora stata approvata una normativa omogenea sulle DAT e che non hanno in programma di approvarne una in futuro (Norvegia, Portogallo, Grecia, Serbia, Slovacchia, Bulgaria, Lituania, Turchia). ---------- The contribution compares the different existing approaches to advance health care directives within the European context, and explores the possibility of reaching a deeper consensus on this subject among countries. In the context of the current controversy about the role, efficacy, and unefficacy of advance directives of treatment, the aim of this paper is to present an analysis of the legal status of advance directives in the European context and some European countries. At present, the legal status of advance directives in the domestic legislation of European states is very disparate. In this regard, four groups of countries are distinguished in the paper: 1. Countries having passed specific laws to provide that advance directives are prima facie binding, that is, they may be overridden only for compelling reasons (United Kingdom, Austria, Spain, Hungary, Belgium, The Netherlands, Luxemburg, Finland, Germany); 2. Countries where specific laws on the issue have been adopted in recent years, but assigning a merely advisory value to advance directives (France); 3. Countries where there is no specific legislation yet, but which are planning to introduce it in the next few years (Switzerland, Italy); 4. Countries where there is no specific legislation yet and which do not have any concrete plans to introduce it in the coming years (Norway, Portugal, Greece, Serbia, Slovakia, Bulgaria, Lithuania, Turkey).

Advance Health Care Directives: Towards a Coordinated European Policy?

The aim of this paper is to compare the different existing approaches to advance health care directives within the European context, and to explore the possibility of reaching a deeper consensus among countries on this subject. To this end, it first discusses the shortcomings of Article 9 of the Council of Europe's Biomedicine Convention. Second, it offers a comparative analysis of the legal status of advance directives in a number of European countries. Finally, it presents the conclusions of an international interdisciplinary workshop focused on this topic that was held in Zurich in June 2008.