Introduction

Bibliographical Note

Gay men's end-of-life experiences is a fairly recent and emerging field of research. Early work has been done in Australia, Canada, England and the USA in the field of social work and the disciplines of law and sociology where the focus has tended to be on the end-of-life experience. Almost all publications that included the experiences or concerns of gay men were from research on the broad LGBT populations. ²

Stand-alone studies on gay men's end-of-life were few in number and very little work has been undertaken on the end-of-life plans and experience of international cohorts of only gay men. As the chapter outlines (below) make clear, this book concentrated on the plans and experiences of an international sample of gay men in relation to their will-writing and beneficiary decision-making; advance-care decisions and power-of-attorney appointments; euthanasia and afterlife beliefs; and their funeral plans. Each chapter begins with a short summary of the relevant literature.

A central argument in most of the work on queer end of life was the tension between choosing family members or partners or friends to take on legal and health-care responsibilities in the last stage of life. Early US research emphasized the importance of friends and the family of choice for ageing gays and lesbians who were likely to experience social isolation because of broken ties with their family of origin. ³ Later English research showed that when writing wills, older lesbians and gays tended to choose between children, friends, siblings, ⁴ or make mixed choices, while a study of the end-of-life preparations of LGBT Canadians found a preference for family members over friends for end-of-life discussions and decision makers. ⁵ Australian research noted how advance care or power of attorney provided LGBT people with instruments that avoided the default of family of origin as end-of-life decision makers. ⁶ And preliminary analysis of the beneficiary decisions of a select group of 18 participants from the full data set used in this book showed a distinct preference for family of origin over chosen family. ⁷

One obvious reason for the interest in findings that confirm the privileging of family over friends is that from the 1980s the chosen family was regarded as an alternative to the family of origin either completely or when the latter was not accepting of gay family members' sexuality preferences, ⁸ and, before that, the long history of the gay couple, which 11 participants from this study regarded as their family, and which existed outside the traditional structure of the family of origin. In summary, then, the general assumption that queer people were more inclined to form families of choice and that the family-of-choice idea was widespread also in the general population was not supported by a lot of queer end-of-life research and the research for this book.

Methodology and Sample

The data for this book came from interviews with a sample of 43 gay men aged 40 and older. The majority of participants were recruited from five countries with relatively advanced queer cultures, namely, Australia, Canada, England, New Zealand and the USA. Some had been interviewed for my previous work on gay ageing and gay men's working lives and retirement, and so this was their second interview. ⁹ In addition, two men were recruited from Germany and Hong Kong. The participant who was living in Germany at the time of interview was a North American expatriate who was instrumental in assisting me make contact with the group of men from California who took part in the research. I had intended to recruit a larger cohort from Hong Kong but whether because the topic was unappealing – at least one of the Chinese-Australian gay men that I consulted in the early phase of the research said that raising matters concerning death and the transfer of property might be regarded as offensive – or because Hong Kong was unsettled because of civil disorder in 2019 and the Coronavirus pandemic in 2020, only one gay Hong Kongese asked for an interview. ¹⁰

Traditional qualitative research techniques were used. Firstly, notice of the intention to conduct the research on gay men's end of life and a call for potential interviewees were sent out to gay community groups in Australia, Hong Kong and North America. Secondly, in England and New Zealand, I contacted networks of colleagues and friends to alert them to the research and asked them to disseminate a notice advertising it. To optimise the variety of end-of-life accounts, potential interviewees were purposively recruited through gay community groups and professional and social networks.

In Australia, notices were advertised with Aleph, a social support group for GLBTI Jews in Melbourne and The Country Network, a social support group for gay and bisexual men living in rural and regional Australia as well as at the Australian Lesbian and Gay Archives, Homo Histories Conference, Canberra, November 2019 and the National Tertiary Education Union's Queer Conference, January 2020. In England, recruitment proceeded almost entirely as a result of the help of Mr Rehan Kularatne as well as through an advertisement placed in London Review of Books, October 2020–May 2021. In North America, assistance to publicise the research came from Mr Eric Jannke and also from support groups in and around California including Let's Kick Ass in Palm Springs; PALS in the desert; HIV and aging (sic) research group as well as via an advertisement placed in New York Review of Books, May–December 2021. Thirdly, when potential respondents expressed an interest in being interviewed, they were sent a copy of the plain-language statement and consent form. ¹¹ Once the signed consent form was returned and a time and date agreed upon, the interview was held and recorded.

I encountered more problems recruiting interviewees for this research than for any previous research. It is hard to know if this was because in the minds of many people, priests, doctors or lawyers are the only appropriate experts on death and end-of-life, and that it is not the domain of historians or sociologists. Wills are very personal documents, and often only discussed with a person's partner and lawyer and perhaps also whoever was nominated as executor and power of attorney. The prospect of discussing the details of such a document with a stranger, therefore, and in the context of ‘end-of-life’ might account for some of the difficulties that I experienced in recruiting interviewees, for no matter how relaxed or at ease contemporary society might appear to be with death, it is still a taboo topic, as are will-writing and inheritance. In some countries and among some classes, the latter are topics of the utmost secrecy and certainly not to be shared with strangers, let alone a stranger who is also a researcher.

I have written elsewhere about the problems of recruiting in a foreign land and how letters or emails of introduction can open previously closed doors in local gay communities. ¹² No matter how sociable gay life appears online (for example on Grindr or Gay Romeo) or face-to-face (in clubs, bars, sex venues) researchers from ‘out of town’ must first establish their bona fides and acquaint themselves with the local culture and social institutions before they can hope to recruit potential interviewees. Like an anthropologist wishing to study the inhabitants of a location where they are not known, ground work is required to establish trust with the people they wish to study before the first interview can take place. And as anthropologists know also, despite the heartache of rejected invitations to interview, location is so very useful for what it reveals about cross-national similarities or differences in the data. In the case of this research whether, for example, it can show if the experience of being a gay man and preparing end-of-life documents in The Australian Capital Territory is similar to or different from that of a gay man living in England or British Columbia or if a case can be made for the existence of shared experience of an international western gay habitus.

All interviews with participants living in Australia took place before the onset of the Covid-19 pandemic in Australia and were recorded face-to-face on a digital recorder. Interviews in England, New Zealand and North America were held during the Covid-19 pandemic, 2020–2021 and took place using the Zoom online conference platform. They were orally recorded (not visually) and later transcribed. All interviewees were asked if they would give permission for the oral recordings to be deposited in perpetuity with the La Trobe Library, Melbourne.

Pseudonyms were used in the book to protect the identity of the participants. In the case of interviewees who participated in my previous research, ¹³ the pseudonyms used then were used again in this book, so readers who have copies of my previous published research and the interviewees themselves would be able to track connections across time. Interviewees' correct age at the time of interview were used together with their country of residence, also at the time of interview.

Central to the chapters that follow are aspects of the dying business of the 43 gay men, their accounts of how they were planning to prepare for their own death, in the writing of wills, appointing of attorneys, musings on their funeral plans. The interviews are a snapshot of the preparations that these men were making for their own death at some point in the future. In answering the set of questions that I devised in the hope of gaining some insight into their thinking, they behaved as all interviewees do: some kept to the topic, others strayed off topic, but all drew on their memory of the decisions that they had made about how they hoped to die and sometimes their experience of being with others who had already died.

Chapter Outlines

The dying business that is explored in this book has practical aspects. These are explored in sequence beginning with Chapter 1. Broader theoretical questions are explored in each chapter as they arise.

Chapter 1: Affective and Intimate Lives.

This gives some of the background to decision-making by examining the nature of relationships that the participants had formed in the context of greater acceptance of queer relationships and marriage equality legislation as well as their birth families and current families. It describes how many were in couple relationships and of these what proportion were in common-law (or de facto) relationships, civil partnership, civil union or were gay married as a means of understanding in later chapters their beneficiary decisions, appointment of executors and powers of attorney.

Chapter 2: Wills and Beneficiary Decisions.

The focus of this chapter is on will-writing and decisions concerning beneficiaries. Particular attention is paid to whether participants preferred family members, partners or friends when choosing executors and beneficiaries and their reasons for doing so. Motivation for benefactions such as altruism and social solidarity are also considered.

Chapter 3: Managing Physical and Mental End of Life.

Decisions concerning advance care and power of attorney are investigated in this chapter. A relatively new end-of-life instrument, the advance care was in practice in most of the jurisdictions from which the participants were drawn, as was the long-established legal instrument, power of attorney or its equivalent. Again the focus is on the extent to which participants chose family members over partners or friends to manage their advance care or act at their attorney.

Chapter 4: Euthanasia and Afterlife Beliefs.

Participants were prompted towards the end of the interview to discuss beliefs concerning euthanasia on the one hand and life after death on the other hand, and thus the focus of this chapter. Their views on euthanasia are examined in the context of assisted suicide and dying with dignity services and for what they reveal about end-of-life suffering and the notion of the ‘good death’.

Chapter 5: Funeral Plans.

The final chapter discusses what participants' views were on how they planned or expected to have their bodies disposed of after death and whether they preferred burial to cremation or the bone crusher. Implicitly in recounting their views on what sort of funeral they wanted or whether they wanted one at all, the participants revealed something about how they regarded their life's worth.

A theme that kept recurring when I was examining the participants' decisions about the writing of wills, appointing of attorneys, or when they were musing on their funeral plans was the power that lived experience had in shaping their understanding of the present and their future. In the case of the men interviewed for this book, often it was an experience of the end of life of someone close to them, a friend, a parent or a partner, that shaped their understanding and might have influenced their decisions concerning what their own death might look like and how it might occur.

Having accepted what historian Philippe Aries argued – that death which was once tame, is now wild and can terrify us ¹⁴ – I was intrigued to find that those who had witnessed the death of someone close to them, who had borne witness, to use the religious phrase, seemed to be able to learn from that experience of death, to banish fear and to think about, conceive and plan for their own with greater strength of mind. And that practice based on such an understanding, as was revealed time and again in interviews with participants, reinforced in my mind the truth of anthropologist Clifford Geertz's argument – stated in the quotation at the head of this Introduction – that ethnographic description consists in rescuing ‘the said’ from its perishable state and setting it down for our perusal, after the event.