Origins of the desire for euthanasia and assisted suicide in people with HIV-1 or AIDS: a qualitative study

Summary

Background

Euthanasia and assisted suicide, and policies to address them are the subjects of contentious debate in many countries. However, the question of why people desire euthanasia or assisted suicide has not been coherently answered. We aimed to answer this question in a specific group of patients.

Methods

We did a qualitative study of 32 people with HIV-1 or AIDS, who were enrolled in the HIV-1 Ontario Observational Database at Sunnybrook and Women's College Health Sciences Centre, Toronto, Ontario, Canada. We elicited participants' experiences of deliberation about euthanasia or assisted suicide, and the meaning of these experiences with in-depth, face-to-face interviews. We analysed our data with grounded theory methods.

Findings

Participants' desire for euthanasia and assisted suicide were affected by two main factors: disintegration, which resulted from symptoms and loss of function; and loss of community, which we defined as progressive diminishment of opportunities to initiate and maintain close personal relationships. These factors resulted in perceived loss of self. Euthanasia and assisted suicide were seen by participants as means of limiting loss of self.

Interpretation

These determinants of desire for euthanasia or assisted suicide in people with HIV-1 or AIDS have implications for the debate on these practices, and development of policies to regulate them.

Introduction

What gives rise to desire for euthanasia or assisted suicide? Although the traditional idea is that such deaths are wished for as a means to avoid pain and suffering, studies suggest that this explanation is insufficient.1, 2 In fact, depression,3, 4 hopelessness,5, 6 psychological distress,3, 7 and need for social support⁷ are all factors. However, how and why these factors lead people to euthanasia or assisted suicide has not been explained.

People with HIV-1 or AIDS are an appropriate group in which to investigate what causes the desire to die in this way. An estimated third of people living with HIV-1 or AIDS in the developed world have considered asking for assistance to hasten death, which is ten times the rate among seronegative controls.⁸ In the Netherlands, before the advent of highly active antiretroviral therapy, about 25% of people with HIV-1 or AIDS died by euthanasia.9, 10 Factors such as social isolation, estrangement, alienation, and grief affect people with HIV-1 or AIDS¹¹ and their caregivers.¹² People with HIV-1 or AIDS also have a higher rate of psychiatric symptoms such as depression,¹³ and a higher risk of suicide than seronegative individuals.¹⁴

We aimed to understand why people desire euthanasia or assisted suicide. This information could be used to inform the debate on euthanasia and assisted suicide, and to aid development of policies designed to regulate these practices.