Perspective And Theoretical analyses Of Suffering in the context of Euthanasia and Physician Dying (PATHOS)

 

The PATHOS project is a multiperspective and longitudinal study investigating the experience of suffering in the context of euthanasia and physician-assisted dying (EAD) in the Netherlands. 

 

The Netherlands was the first country worldwide to have legalized EAD in 2002. Euthanasia corresponds to the administering of a fatal dose of a suitable drug to the patient on their express request and intends to relieve suffering by accelerating death. Physician-assisted dying is distinct from euthanasia in that the physician supplies the drug, but the patient is the one who administers it. In both cases, the physician must ensure that the statutory due care criteria are fulfilled. 

 

Central to the EAD law is the presence of unbearable suffering without any prospect of improvement and the lack of a reasonable alternative. Although at the heart of this law, very little research describes the experience and the meaning of the suffering of patients making an EAD request. An overview of the literature shows that the interpretation of suffering differs among patients, physicians, and close ones. Indeed, some studies show that physicians tend to interpret suffering as predominantly physical pain, while patients would conceptualize their suffering more from a psychological, social, or existential angle. Other studies highlight situations where relatives struggled to recognize the severity of the patient’s suffering and thus had difficulty recognizing and understanding the patient’s assisted death request. Furthermore, despite knowing that there are several stages to the EAD process (e.g., discussions on eligibility, the time point when EAD is requested, and the doctors' decision), which may each trigger different emotions and reactions amongst those involved, little is known about the patient’s journey over time. Altogether, the literature suggests that the experience of suffering of patients making an EAD request seems subjective and context-dependent.

 

The PATHOS study's general goal is to explore the personal, relational, and care context in which the suffering unravels to better account for the complexity of this experience and identify the nuances of this experience. More precisely, the PATHOS study aims to (1) better understand the meaning and the experience of suffering of the patient requesting EAD, (2) explore and describe how the close ones and healthcare professionals perceive the suffering of the patient, and navigate through this medical journey. 

 

This project addresses these points using qualitative, multiperspective, and longitudinal approaches. By bringing together the patients, the close ones, and the healthcare professionals, we will observe the interactions between these actors and how they experience and perceive suffering in this context. 

 

The PATHOS study will hopefully contribute to the quality of the assessment process and foster conversations about the experience of suffering in the EAS context. 

 

The PATHOS project is hosted by the Radboud University Medical Center in Nijmegen, The Netherlands. The supervisor of this project is Dr. Els van Wijngaarden. 

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