Research / Studies

 

 

Understanding the perspectives of UK-based family members of people who have chosen to end their life by assisted dying

PhD thesis by Dr Megan Knights (nee Hitchcock)
published in October 2023

Megan Knights is a Clinical Psychologist who recently completed her Doctorate in Clinical Psychology at the University of Hertfordshire (UH). In her research, Megan interviewed a small sample of family members about their views on assisted dying, the various contexts informing these views, and the resources that they drew on to support themselves during this time.

Summary of main findings (Link)

Full thesis (Link)


Claims and Facts about Oregon's Death with Dignity Act at 25 years

A comment on “Oregon Death with Dignity Act access: 25 year analysis”
by Nicholas L. Gideonse and Barbara Coombs Lee
published in BMJ Supportive and Palliative Care, 27 October 2023 (Link)

The article “Oregon Death with Dignity Act access: 25 year analysis” provides a simplistic perspective, relying heavily on correlation, not causation, to make unproven claims about Oregon’s medical aid-in-dying law and erroneously comparing it to euthanasia laws outside the United States. Six claims – and the facts.


Imaginaries of Dying: The Visual Rhetoric of Stock Images Tagged with “Palliative Care”

Study by Gaudenz Urs Metzger and Tina Braun
published in OMEGA - Journal of Death and Dying, June 2023 (Link)

Excerpt: The researchers examined the depiction of dying and death in stock photographs tagged with “palliative care”. Health care institutions are presented in these images as well-functioning, spotlessly clean places of care, populated by young, primarily female caregivers who look after their mostly fit patients with a sense of sacrifice and devotion. In comparing these narratives to those reported by the dying themselves, it can be observed that uncertainty, the fear of dying and of death, loneliness, and the ailing and decaying body, have simply been omitted from the imagery.
Stock photography of palliative care paints a highly idealized and euphemistic picture of dying and death. The stereotypical narrowing down of the imagery to a few motifs such as “holding hands” or “composure” means that the individual nuances and experiences of dying are erased, especially those that are negative, such as grief or despair. As a result, these images infer that the final phase of life and dying is something peaceful and entirely unproblematic. This can possibly raise false expectations and hopes among patients and relatives and subsequently may also trigger conflicts with institutions and members of staff if the dying process does not proceed according to this ideal.


Assisted Dying Law Reform: Overcoming the Painful Process that Leads to a Painless Death

PhD Thesis by Elena Roxana Tudosie (Link)
published January 2023

Excerpt from the abstract: The assisted dying debate in the legal jurisdiction of England and Wales is nearing a determining moment, therefore, this thesis analyses the factors concerning assisted dying law reform. This study argues that the criminal law and its response to instances of assisted suicide under Section 2 of the Suicide Act 1961, is merely a coping mechanism, an ‘untidy compromise’ designed to uphold the interests of ‘compassionate-helpers’. It does not meet the needs of ‘death-seekers’. Since the Human Rights Act 1998 came into force, the legal judgments in this area reveal judicial deference to the current construct of the law and the Westminster Parliament’s wish to uphold the so-called blanket prohibition. The legislative attempts since 1936, the challenges on compatibility of the prohibition with the European Convention on Human Rights, as well as the prosecutorial decision-making process, have failed to address this cauldron of disquiet. This thesis asserts that the question on assisted dying ought to be addressed fully, with the Government providing Parliamentary time as a matter of urgency.


Attitudes of university hospital staff towards in-house assisted suicide

Study by Claudia Gamondi, Angèle Gayet-Ageron, Gian Domenico Borasio, Samia Hurst, Ralf J. Jox, Bara Ricou
published in PLOS ONE, 27 October 2022, open access (Link to the article)

This research investigated staff attitudes toward assisted suicide in two University Hospitals in French speaking regions of Switzerland. 13’834 health care professionals, including all personnel caring for patients, were invited to participate. 73% of participants approved that this practice should be authorized in their hospital and saw more positive than negative effects. 57.6% would consider assisted suicide for themselves. Non-medical professionals were 1.28 to 5.25 times more likely to approve assisted suicide than physicians. 70.7% of respondents indicated that each professional should have the choice of whether to assist in suicide.


Aggregating 23 years of data on medical aid in dying in the United States

Study by Elissa Kozlov PhD, Molly Nowels MS, Michael Gusmano PhD, Muhammed Habib MD, Paul Duberstein PhD, June 2022 (Link)

An analysis of data from nine United States jurisdictions with assisted dying (MAID / assisted suicide but not voluntary euthanasia) laws, from 1998 to 2020.

Over 23 years, 5,329 people choose MAID, while 8,451 received a prescription. Individuals who choose MAID tend to be older, white, educated, and diagnosed with cancer across all jurisdictions where it is legal. Many who choose MAID previously had received hospice care. Still, the majority (90%) chose to die at home.

Analysis press release by Rutgers Biomedical and Health Services (Link)


Disability-based arguments against assisted dying laws

Article by Ben Colburn, Professor of Political Philosophy at the University of Glasgow (Link)
published: 7 April 2022

Abstract: Some of the most common arguments against legalizing assisted dying are based on appealing to the rights of people with disabilities. This article identifies and responds to those arguments, including that people with disabilities univocally oppose assisted dying laws; that those laws harm people with disabilities, or show disrespect; and that those laws undermine other vital aspects of healthcare. Drawing on philosophical argument, as well as on evidence from jurisdictions where assisted dying is legal, the article concludes that considerations of disability do not in fact generate good arguments against assisted dying laws. In fact, the opposite is true. There are nevertheless important lessons that proponents and defenders of such laws can learn in conversation with people with disabilities, including about safeguards on assisted dying to protect their well-being and autonomy.


Understanding why patients request euthanasia when it is illegal: a qualitative study in palliative care units on the personal and practical impact of euthanasia requests

Danièle Leboul, Anne Bousquet, Aline Chassagne, Florence Mathieu-Nicot, Ashley Ridley, Elodie Cretin, Frédéric Guirimand, Régis Aubry.

published 2022 in Palliative Care & Social Practice, Vol. 16: 1-11 (Link)

A request for euthanasia appears to be a willful means to remove oneself from the impasse of an existence paralyzed by suffering. It creates a space for discussion, which promotes negotiation with patients on care practices and therapeutics, and strengthens patients' sense of autonomy. Investigating the relationship between the evolution of euthanasia requests within the palliative care setting could be beneficial. It is important to encourage health care professionals to adopt a readiness to listen by interacting with patients in a way that is not momentarily action-oriented but rather focused on proactive discussion.


Early experience with medical assistance in dying in Ontario, Canada: a cohort study

Study by James Downar MDMC MHSc, Robert A. Fowler MDCM MS(Epi), Roxanne Halko RN MPH, Larkin Davenport Huyer MPH, Andrea D. Hill PhD, Jennifer L. Gibson PhD; in: The Canadian Medical Association Journal CMAJ, February 2020 (Link to Article)

Medical assistance in dying (MAiD) was legalized across Canada in June 2016. Some have expressed concern that patient requests for MAiD might be driven by poor access to palliative care and that social and economic vulnerability of patients may influence access to or receipt of MAiD. To examine these concerns, the authors describe Ontario’s early experience with MAiD and compare MAiD decedents with the general population of decedents in Ontario. Result: Recipients of MAiD were younger, had higher income, were substantially less likely to reside in an institution and were more likely to be married than decedents from the general population, suggesting that MAiD is unlikely to be driven by social or economic vulnerability.


Suicide among physicians and health-care workers: A systematic review and meta-analysis

Study by Frédéric Dutheil, Claire Aubert, Bruno Pereira, Michael Dambrun, Fares Moustafa, Martial Mermillod, Julien S Baker, Marion Trousselard, François-Xavier Lesage, and Valentin Navel. In: PubMed, December 2019, PMID: 31830138, PMCID: PMC6907772, DOI: 10.1371/journal.pone.0226361 (Link)

Physicians are an at-risk profession of suicide, with women particularly at risk. The rate of suicide in physicians decreased over time, especially in Europe. The high prevalence of physicians who committed suicide attempt as well as those with suicidal ideation should benefits for preventive strategies at the workplace.


Experience With the California End of Life Option Act in the First Year of Implementation

Study by Huong Q. Nguyen, PhD, RN1 Eduard J. Gelman; Tracey A. Bush, MSW, LCSW; et al, 2018 (Link)

The California End of Life Option Act (EOLOA)took effect on June 9, 2016. In response to recommendations for more comprehensive documentation of EOLOA implementation to improve end-of-life care, this study describes the experience of a large integrated health system and provides in-depth descriptions of individuals who initiated the EOLOA process.


Euthanasia embedded in palliative care. Responses to essentialistic criticisms of the Belgian model of integral end-of-life care

Article by Jan Bernheim and Kasper Raus, in: Journal of Medical Ethics, July 2017 (Link to Abstract)

The Belgian model of ‘integral’ end-of-life care consists of universal access to palliative care (PC) and legally regulated euthanasia. The empirical evidence from the euthanasia-permissive Benelux countries shows that since legalisation, carefulness (of decision making) at the end of life has improved and there have been no significant adverse ‘slippery slope’ effects.


Trajectories to seeking demedicalised assistance in suicide: a qualitative in-depth interview study

Study by Martijn Hagens, Bregje D. Onwuteaka-Philipsen, H. Roeline and W. Pasman, in: Journal of Medical Ethics doi:10.1136/medethics-2016-103660 (Link to Abstract)

In the Netherlands, people can receive (limited) demedicalised assistance in suicide (DAS) – an option less well known than physician-assisted dying (PAD). The study explores which trajectories people take to seek DAS. The study concludes that while PAD is the preferred option of people in two trajectories, obtaining PAD is uncertain and not always possible. Dissatisfaction with physician–patient communication can result in the physician not being involved in DAS, being unable to diagnose diseases and offer treatment nor offer reassurance that people seem to seek. It closes with a plea for more mutual understanding, respect and empathy for the limitations and possibilities of the position of the physician and the patient in discussing assistance in dying.


Attitudes of New Zealand doctors and nurses towards legalising assisted dying – Report to New Zealand medical and nursing associations

Report by Phillipa Malpas, Michael Wilson and Pam Oliver, University of Auckland, New Zealand (Link / PDF)


Two Decades of Research on Euthanasia from the Netherlands. What Have We Learnt and What Questions Remain?

Judith A. C. Rietjens , Paul J. van der Maas, Bregje D. Onwuteaka-Philipsen, Johannes J. M. van Delden, Agnes van der Heide in: Journal of Bioethical Inquiry, September 2009, Volume 6, Issue 3, pp 271-283 (Link)


A research into 387 files of members of DIGNITAS shows that of those members who actually completed their formal request for an accompanied suicide and who actually received a “provisional green light”, only some 14 % actually made use of an accompanied suicide with DIGNITAS.

Excerpt of the diploma thesis (PDF, in German)


Legal physician-assisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in ‘vulnerable’ groups

Margaret P Battin, Agnes van der Heide, Linda Ganzini, Gerrit van der Wal, Bregje D Onwuteaka-Philipsen, in: Journal of Medical Ethics 2007; 33 :591–597. doi: 10.1136 / jme.2007.022335 (Link)


Research by a student of the Otto von Guericke University in Magdeburg, Germany, into 138 accompanied suicides at DIGNITAS, shows that the preparation and assessment time between becoming a member of DIGNITAS and the actual accompanied suicide is around 3 to 6 months. The study disproves claims that it is possible to travel to DIGNITAS one day and receive access to an accompanied suicide right away.

Study (PDF, in German)


Effects of euthanasia on the bereaved family and friends: a cross sectional study

Nikkie B Swarte, Marije L van der Lee, Johanna G van der Bom, Jan van den Bout, A Peter M Heintz. In: British Medica Journal, July 2003; 327:189

This study by Nikkie B Swarte et al of the University of Utrecht shows that bereaved family and friends of cancer patients who died by euthanasia had less traumatic grief symptoms, less current feeling of grief; and less post-traumatic stress reactions than the family and friends of patients who died of natural causes. (Link)


The 'window of opportunity' for death after severe brain injury: family experiences (PDF)

This article by Professors Celia and Jenny Kitzinger explores the problems associated with the right to die for people who lack the capacity to make that choice (because they are in a coma, vegetative, minimally conscious etc). It builds on and develops the emerging bioethics literature on the 'window of opportunity' for allowing death by withholding or withdrawing treatment.


What are the social and economic costs deriving from suicides in Switzerland? What is the price of desperation which has to be paid due to some 1300 suicides and ten-thousands of suicide attempts?

Study "The Price of Desperation" (PDF, in German)


The article "Legal, political and ethical aspects of the assisted dying debate in Germany“, published in the journal “Aufklärung und Kritik”, special edition 11/2006 (ISSN 0945-6627) provides many references to studies, numbers and facts regarding suicides in Germany and Switzerland.

Article (PDF, in German)

 
 

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