scholarly journals 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

10.2196/28635 ◽  
2021 ◽  
Vol 23 (9) ◽  
pp. e28635
Author(s):  
Matthias Huemer ◽  
Daniela Jahn-Kuch ◽  
Guenter Hofmann ◽  
Elisabeth Andritsch ◽  
Clemens Farkas ◽  
...  
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
End Of Life ◽  
Assisted Suicide ◽  
Public Awareness ◽  
End Of Life Decisions ◽  
The Public ◽  
Care Services ◽  
Life Decisions ◽  
Advance Health Care Directives

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.

scholarly journals 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)

2021 ◽  
Author(s):  
Matthias Huemer ◽  
Daniela Jahn-Kuch ◽  
Guenter Hofmann ◽  
Elisabeth Andritsch ◽  
Clemens Farkas ◽  
...  
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
End Of Life ◽  
Assisted Suicide ◽  
Public Awareness ◽  
End Of Life Decisions ◽  
The Public ◽  
Care Services ◽  
Life Decisions ◽  
Advance Health Care Directives

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.

To die, to sleep, perchance to dream? A response to DeMichelis, Shaul and Rapoport

2019 ◽  
Vol 45 (12) ◽  
pp. 832-834 ◽  
Author(s):  
Joel L Gamble ◽  
Nathan K Gamble ◽  
Michal Pruski
Keyword(s):  
Palliative Care ◽  
Medical Ethics ◽  
End Of Life ◽  
Assisted Suicide ◽  
Palliative Sedation ◽  
Physician Assisted Suicide ◽  
Medical Assistance ◽  
End Of Life Decisions ◽  
Medical Assistance In Dying ◽  
Life Decisions

In developing their policy on paediatric medical assistance in dying (MAID), DeMichelis, Shaul and Rapoport decide to treat euthanasia and physician-assisted suicide as ethically and practically equivalent to other end-of-life interventions, particularly palliative sedation and withdrawal of care (WOC). We highlight several flaws in the authors’ reasoning. Their argument depends on too cursory a dismissal of intention, which remains fundamental to medical ethics and law. Furthermore, they have not fairly presented the ethical analyses justifying other end-of-life decisions, analyses and decisions that were generally accepted long before MAID was legal or considered ethical. Forgetting or misunderstanding the analyses would naturally lead one to think MAID and other end-of-life decisions are morally equivalent. Yet as we recall these well-developed analyses, it becomes clear that approving of some forms of sedation and WOC does not commit one to MAID. Paediatric patients and their families can rationally and coherently reject MAID while choosing palliative care and WOC. Finally, the authors do not substantiate their claim that MAID is like palliative care in that it alleviates suffering. It is thus unreasonable to use this supposition as a warrant for their proposed policy.

American Society of Clinical Oncology Provisional Clinical Opinion: The Integration of Palliative Care Into Standard Oncology Care

2012 ◽  
Vol 30 (8) ◽  
pp. 880-887 ◽  
Author(s):  
Thomas J. Smith ◽  
Sarah Temin ◽  
Erin R. Alesi ◽  
Amy P. Abernethy ◽  
Tracy A. Balboni ◽  
...  
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
End Of Life ◽  
Clinical Oncology ◽  
Metastatic Cancer ◽  
Expert Consensus ◽  
Care Services ◽  
Palliative Care Services ◽  
Oncology Care ◽  
American Society

Purpose An American Society of Clinical Oncology (ASCO) provisional clinical opinion (PCO) offers timely clinical direction to ASCO's membership following publication or presentation of potentially practice-changing data from major studies. This PCO addresses the integration of palliative care services into standard oncology practice at the time a person is diagnosed with metastatic or advanced cancer. Clinical Context Palliative care is frequently misconstrued as synonymous with end-of-life care. Palliative care is focused on the relief of suffering, in all of its dimensions, throughout the course of a patient's illness. Although the use of hospice and other palliative care services at the end of life has increased, many patients are enrolled in hospice less than 3 weeks before their death, which limits the benefit they may gain from these services. By potentially improving quality of life (QOL), cost of care, and even survival in patients with metastatic cancer, palliative care has increasing relevance for the care of patients with cancer. Until recently, data from randomized controlled trials (RCTs) demonstrating the benefits of palliative care in patients with metastatic cancer who are also receiving standard oncology care have not been available. Recent Data Seven published RCTs form the basis of this PCO. Provisional Clinical Opinion Based on strong evidence from a phase III RCT, patients with metastatic non–small-cell lung cancer should be offered concurrent palliative care and standard oncologic care at initial diagnosis. While a survival benefit from early involvement of palliative care has not yet been demonstrated in other oncology settings, substantial evidence demonstrates that palliative care—when combined with standard cancer care or as the main focus of care—leads to better patient and caregiver outcomes. These include improvement in symptoms, QOL, and patient satisfaction, with reduced caregiver burden. Earlier involvement of palliative care also leads to more appropriate referral to and use of hospice, and reduced use of futile intensive care. While evidence clarifying optimal delivery of palliative care to improve patient outcomes is evolving, no trials to date have demonstrated harm to patients and caregivers, or excessive costs, from early involvement of palliative care. Therefore, it is the Panel's expert consensus that combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden. Strategies to optimize concurrent palliative care and standard oncology care, with evaluation of its impact on important patient and caregiver outcomes (eg, QOL, survival, health care services utilization, and costs) and on society, should be an area of intense research. NOTE. ASCO's provisional clinical opinions (PCOs) reflect expert consensus based on clinical evidence and literature available at the time they are written and are intended to assist physicians in clinical decision making and identify questions and settings for further research. Because of the rapid flow of scientific information in oncology, new evidence may have emerged since the time a PCO was submitted for publication. PCOs are not continually updated and may not reflect the most recent evidence. PCOs cannot account for individual variation among patients and cannot be considered inclusive of all proper methods of care or exclusive of other treatments. It is the responsibility of the treating physician or other health care provider, relying on independent experience and knowledge of the patient, to determine the best course of treatment for the patient. Accordingly, adherence to any PCO is voluntary, with the ultimate determination regarding its application to be made by the physician in light of each patient's individual circumstances. ASCO PCOs describe the use of procedures and therapies in clinical trials and cannot be assumed to apply to the use of these interventions in the context of clinical practice. ASCO assumes no responsibility for any injury or damage to persons or property arising out of or related to any use of ASCO's PCOs, or for any errors or omissions.

Palliative Care at the End of Life

2006 ◽  
Author(s):  
David J. Bearison
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Assisted Suicide ◽  
Psychosocial Support ◽  
Symptom Control ◽  
Life Care ◽  
Curative Intent ◽  
The Board Of Directors ◽  
Life Decisions

Consider the following advice given to parents whose children are dying in hospitals: “If your child has to die, he can die peacefully. You can make sure he is free of pain. You can make sure that everyone has a chance to say good-bye” (Hilden & Tobin, 2003, p. 3). To offer parents this kind of unconditional assurance (i.e., “You can make sure . . . ”) dismisses the confusing and disturbing realities of actually having to care for a child when it becomes increasingly apparent that curative intent is failing and staff begin to question how best to proceed. The complexity of symptom control in various clinical conditions sometimes precludes children from having peaceful deaths. However, when you read findings from the few palliative care studies that exist (and there are few that consider children as participants), issues of pain management and psychosocial support at the end of life do not seem to be so difficult to resolve. These findings promote ideas that, when satisfactory end-of-life care is not achieved, it is because mistakes were made, staff were inadequately trained, and children thereby were made to suffer unnecessarily. Such ways of thinking in turn lead bereft parents to feel guilty at not having empowered themselves to have taken greater control in the care of their child and to have done the right thing for their child. Although mistakes occur, staff can be better trained, and children might unnecessarily suffer, there are very few guarantees of a comfortable way of dying from medical causes. Most textbooks and studies about end-of-life care simply ignore the messy realities and uncertainties, particularly as they pertain to children and their families. The Report to the Board of Directors of the American Psychological Association from its Working Group on Assisted Suicide and End-of-Life Decisions (2003) raised a clarion call to document publicly what it is like, in practical day-by-day terms, for people who die in hospitals and how it affects endof- life decisions for the staff, patients, and families. We all prefer to die quickly, without protracted suffering and pain and without humiliation. Deaths during sleep are particularly preferred.

An early palliative care intervention can be confronting but reassuring: A qualitative study on the experiences of patients with advanced cancer

2019 ◽  
Vol 33 (7) ◽  
pp. 783-792 ◽  
Author(s):  
Monica Fliedner ◽  
Sofia Zambrano ◽  
Jos MGA Schols ◽  
Marie Bakitas ◽  
Christa Lohrmann ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Advanced Cancer Patients ◽  
End Of Life Decisions ◽  
Early Palliative Care ◽  
Network Support ◽  
Care Intervention ◽  
Life Decisions

Background: Intervention trials confirm that patients with advanced cancer receiving early palliative care experience a better quality of life and show improved knowledge about and use of palliative care services. To involve patients in future health-care decisions, health professionals should understand patients’ perspectives. However, little is known about how patients’ experience such interventions. Aim: To explore advanced cancer patients’ experiences with a structured early palliative care intervention, its acceptability and impact on the patients’ life including influencing factors. Design: Qualitative content analysis of in-depth, semi-structured interviews. Setting/participants: Patients with various advanced cancer diagnoses were enrolled in a multicenter randomized controlled trial (NCT01983956), which investigated the impact of “Symptoms, End-of-life decisions, Network, Support,” a structured early palliative care intervention, on distress. Of these, 20 patients who underwent the intervention participated in this study. Results: Participants received the intervention well and gained a better understanding of their personal situation. Patients reported that the intervention can feel “confronting” but with the right timing it can be confirming and facilitate family conversations. Patients’ personal background and the intervention timing within their personal disease trajectory influenced their emotional and cognitive experiences; it also impacted their understanding of palliative care and triggered actions toward future care planning. Conclusion: Early palliative care interventions like “Symptoms, End-of-life decisions, Network, Support” may provoke emotions and feel “confrontational” often because this is the first time when issues about one’s end of life are openly discussed; yet, advanced cancer patients found it beneficial and felt it should be incorporated into routine care.

scholarly journals Establishment of Palliative and End-of-Life Care Services in Sri Lanka

2019 ◽  
Vol 34 (s1) ◽  
pp. s127-s128
Author(s):  
Clifford Perera ◽  
Udayangani Ramadasa ◽  
Chandrika Wijeratne ◽  
Panduka Karunanayake ◽  
Thashi Chang ◽  
...  
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Sri Lanka ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Task Force ◽  
Steering Committee ◽  
Life Care ◽  
Care Services

Introduction:Sri Lanka has a rapidly aging population with an exponential rise in chronic morbidity. There had been no parallel development of palliative and end-of-life care-specific approach in health care.Aim:To implement sustainable palliative and end-of-life care services in Sri Lanka through the existing systems and resources by advocacy, collaboration, and professional commitment.Methods:Sri Lanka Medical Association established a volunteer task force for palliative and end-of-life care (PCTF) in October 2016, which comprised of multi-disciplinary health care professionals, legal fraternity, and civil society. PCTF identified the need for sensitizing the general public on the importance of palliative care, for standard guidelines and formal training for practicing health care professionals engaged in hospital and community-based palliative care. These needs are addressed through activities of PCTF in collaboration with the Ministry of Health.Results:Representing the National Steering Committee of Palliative Care, the members of the PCTF were instrumental in developing the National Strategic Framework to fill the major gap of affordable quality palliative care in the country. PCTF also published the “Palliative Care Manual for Management of Non-Cancer Patients” as a preliminary guide for health care professionals. The draft document on the End-of-Life Care Guidelines has been formulated and is currently being reviewed by the relevant medical and legal stakeholders. PCTF has organized CME lectures on palliative care all over the country for health care professionals, and also conducted lectures, exhibitions, and mass media programs to sensitize the public on palliative care.Discussion:Within a brief period, PCTF has played a key role to recognize palliative care by contributing to policy making, training, and public sensitization in palliative and end-of-life care in Sri Lanka.

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