Death and dying
THIS CONTENT IS NOT FINISHED. BEING WRITTEN NOW: APRIL 2020
Perhaps it's not surprising that MEN R US volunteers have talked about including a section on death and dying for years but never got round to it. Classic avoidance. Though we feel completely out of our depth, the COVID-19 pandemic has spurred us into action.
MEN R US has volunteers in their 60s who remember the immeasurable loss of friends, boyfriends, partners during the HIV and AIDS epidemic and - at the other end of the spectrum- volunteers in their 20s whose closest experience death has been their 80-year old Nan dying, or something they've seen on TV. We are not trying to draw comparisons but our lived experiences are very different and writing this section has been as difficult as it has been demanding.
What is death?
From a biological standpoint:
- "The cessation of all biological functions that sustain a living organism"."
- "The total and permanent cessation of all the vital functions of an organism."
- "The act of passing away, the end of life, or the permanent destruction of something."
- Irreversible cessation of all integrated functioning of the human organism as a whole, mental or physical."
More importantly, though, death may mean something different for you.
What happens when you die? | AsapSCIENCE | 2 Mar 2016 | 3m 11s
Death is a certain
Despite its certainty, death is one of the least discussed parts of our lives.
Furthermore, many of us would struggle (we're assuming here) to know how to even start a conversation about death and dying. Why is this?
- Traditionally, Western culture keeps death at a nice, safe distance
- Out of sight out of mind, it's something best left to hospitals and funeral directors
- We live in a culture of avoidance where we are conditioned to live (busy busy busy) not die
- It's unsettling to talk about mortality, a fear of the unknown, so best not to tempt fate
- Death can prompt us to reflect on what we haven’t done or accomplished in life
- We can be embarrassed asking friends and /or family to handle matters after our death
- The lack of (advance) planning can split families when making difficult decisions, especially if they are not accepting of homosexuality
The awkwardness, embarrassment and fear that death generates means we tend to avoid these important conversations when we are well and healthy but also those people in our lives who are ageing, ill, dying or grieving.
Not talking about this stuff denies them (and us) the support and comfort needed when they need it most. It also undermines our capacity as friends, mates, boyfriends and partners to relate to those around us, shutting down our more compassionate and empathetic selves. It can also stir up and intensify feelings of isolation, regret and guilt for all concerned. Bottom line: this doesn't make us good friends.
We should also spare a thought that deaths do not always the result from natural causes. There is suicide, accidents, and murder to consider which also place intolerable weight on those left behind. More recently, the trail of devastation chemsex can leave in its wake; and suicide among LGBT+ people which are disproportionately higher when compared to the general population.
This is big adult stuff and, ideally, we should be kind, available, and talk openly about death, particularly with those who need us. We do ourselves and those who matter most in our lives, no favours by keeping death do distant for so much of lives, or until illness or tragedy strikes.
Death and dying and being LGBT+
You would think this was enough but death also throws up additional issues if you are LGBT+
- You may experience discrimination: making legal arrangements, planning a funeral, or going head-to-head with family
- Complexities and tension if you or your partner are a person of faith or religion
- There can be assumptions about you or your partner's identity
- Support can be variable, with little support during grief and bereavement
- There is often an emotional toll on boyfriends, partners, husbands and carers left behind
We have been pleased, if surprised, to find a number of LGBT+ publication that specifically deal with treatment and care, dying and death, and planning:
Your treatment and care: planning ahead for the LGBT community | Opening Doors London
Hiding who I am: the reality of the end of life care for LGBT people | Marie Curie
Fears about death and bereavement | NHS Education for Scotland
Queer funeral guide | The Good Grief Trust | Jun 2019
Lesbian, gay, bisexual or transgender people | Care Quality Commission
National End of Life Care Programme | June 2012
The AIDS epidemic’s lasting impact on gay men | The British Academy | 19 Feb 2018
We need to talk about death | Psychology Today | 9 Mar 2017
Era of the death sentence: our AIDS legacy | HuffPost | 6 Jan 2017
‘Archives of Feeling’: the AIDS Crisis in Britain 1987 | Matt Cook | History Workshop Journal | Vol. 83, Issue 1 | 2017
Body or soul: why we don’t talk about death and dying | The Conversation | 24 Nov 2011
"In my experience teenagers read about death and violence because they are fascinated by death and violence and as a society, we shy away from talking about it. When we talk about death – we talk it about it in a historical sense. We discuss the second world war and the tragic waste of human life, or we teach about the death beliefs of the Egyptians, but we don’t tell them what it was like when their grandfather passed away in a hospice, or what it was like when the boy from our class at school was killed by a truck while motorcycle riding. We don’t tell them what we think might happen after we die, we don’t tell them how we feel about it. We treat death like a terrible contagion. Almost as though we are risking the lives of our young if we talk about it – and I mean really talk about it – with them. It’s one of the few things that every single one of us face, and we often ignore it."
Young people are dying to talk about death | Lynnette Lounsbury | The Guardian | 8 Jun 2014
The five stages of death and dying
Before the late 1960s, when one found out they were dying, the focus was on the cure, not necessarily the care. It was the work of psychiatrist Elisabeth Kubler-Ross that changed this perspective of death from an approach of curing to an approach of caring for the person dying. She outlined the five stages of grief and they are worth reading just so you can know what to expect in very general terms, for yourself and others.
- Denial: The first reaction is denial. In this stage, individuals believe the diagnosis is somehow mistaken, and cling to a false, preferable reality.
- Anger: When the individual recognizes that denial cannot continue, they become frustrated, especially at proximate individuals. Certain psychological responses of a person undergoing this phase would be: "Why me? It's not fair!"; "How can this happen to me?"; "Who is to blame?"; "Why would this happen?".
- Bargaining: The third stage involves the hope that the individual can avoid a cause of grief. Usually, the negotiation for an extended life is made in exchange for a reformed lifestyle. People facing less serious trauma can bargain or seek compromise. Examples include the terminally ill person who "negotiates with God" to attend a daughter's wedding, an attempt to bargain for more time to live in exchange for a reformed lifestyle or a phrase such as "If I could trade their life for mine".
- Depression: "I'm so sad, why bother with anything?"; "I'm going to die soon, so what's the point?"; "I miss my loved one; why go on?" During the fourth stage, the individual despairs at the recognition of their mortality. In this state, the individual may become silent, refuse visitors and spend much of the time mournful and sullen.
- Acceptance: "It's going to be okay."; "I can't fight it; I may as well prepare for it." In this last stage, individuals embrace mortality or inevitable future, or that of a loved one, or other tragic events. People dying may precede the survivors in this state, which typically comes with a calm, retrospective view for the individual, and a stable condition of emotions.
Kübler-Ross model | Wikipedia
Death and the LGBT Community: when culture is not defined by country | Death Cafe
Talking about death and dying | Dying Matters
The art of dying well | The Art of Dying Well
Bury your gays | TV Tropes
This trope is the presentation of deaths of LGBT characters where these characters are nominally able to be viewed as more expendable than their heteronormative counterparts. In aggregate, queer characters are more likely to die than straight characters. Indeed, it may be because they seem to have less purpose compared to straight characters, or that the supposed natural conclusion of their story is an early death.