Stigma in Death

Death Discomfort

As human beings we are aware of our own mortality, and this is something we have feared and sought to avoid. Whether our avoidance is through attempts to leave our mark through our achievements, having children, living as healthy and therefore as long as we can, adhering to religious beliefs that promise us an afterlife, and so on (Menzies & Menzies, 2021).

Another way we avoid this is by simply not talking about death. Conversations about death can be uncomfortable, perhaps considered morbid.

I’ve felt these moments of discomfort over the years as I’ve lost people close to me, and others have expressed this same feeling of discomfort. Whether we, as the bereaved, feel the discomfort when talking about our deceased or a topic that happened to be their cause of death, or we see the discomfort in the other person as we speak about our deceased person openly.

There was a view that dominated over the 20^th century, proposed by Freud, that we must sever ties to our dead to complete the process of grieving (Menzies & Menzies, 2021). That only once we detach ourselves from our dead, will we find acceptance and peace (Menzies & Menzies, 2021). I don’t believe this is true. Everyone experiences grief differently, and it may be an ongoing thing that never ends, just changes over time. And, as Erich Fromm said, “To spare oneself from grief at all cost can be achieved only at the price of total detachments, which excludes the ability to experience happiness.”

Stigma

Stigma has been described as an attribute that discredits and reduces a person from a “whole and usual person to a tainted and discounted one.”  (Dyregrov & Selseng, 2022).

It occurs when labelling, stereotypes, social separation, status, and discrimination come together, and can operate at interpersonal, intrapersonal and structural levels (Dyregrov & Selseng, 2022). Similarly, it has also been described as having two dimensions:

• Public stigma, which is the general public holding negative attitudes towards individuals with “undesirable” characteristics;
• and self-stigma, which is the internalisation of public stigma resulting in reduced self-esteem and self-efficacy (Titlestad et al., 2021).

Another facet of stigma is associative stigma, which is described as family members, friends or other acquaintances being “tarnished” through their connection to a person who is part of a stigmatised group (Dyregrov & Selseng, 2022).

Stigmatised death and grief

So, with this taboo surrounding death, and talking about death, I thought about the taboos within that taboo. That is, the stigma surrounding HOW some people die.

Drug-related deaths, suicide, and AIDS deaths have been implicated as “bad” deaths that attract condemnation (Valentine et al., 2016). It has been argued that attitudes towards some stigmatised deaths have improved over time as public awareness has increased (Valentine et al., 2016). However, drug-related deaths continue to be accompanied by bad press, perhaps due to being associated with illicit activity and the perception that they are self-inflicted deaths (Valentine et al., 2016).

This stigma can be extended to those who are mourning, devaluing their grief, leading to marginalisation and isolation, and depriving them of opportunities to share their experience and receive support (Valentine et al., 2016). This is related to disenfranchised grief, which was first applied to the grief experienced by people whose relationship with the deceased was not publicly recognised, and has since been extended to deaths believed to be self-inflicted or not truly entailing a loss (Valentine et al., 2016). The bereaved may internalise negative cultural perceptions and this disenfranchises their own grief (Valentine et al., 2016).

Stigma doesn’t just come from general society and media though; it also comes directly from those nearest and dearest to us. In one study exploring the experiences of those bereaved by a drug-related death, 57% of participants experienced negative and/or stigmatising language from family and friends in regard to their loved one’s death. Compare this to just over a quarter experiencing this from work colleagues, neighbours and other acquaintances; 8% feeling hurt by negative remarks by workers in helping professions (healthcare workers, police); and 7% felt attacked by media coverage of drug-related issues and general societal attitudes. The content of these negative remarks were categorised as:

• Dehumanising labels (which were the most common)
• Unspoken and implicit stigma
• Blaming the deceased
• The only and best outcome (Dyregrov & Selseng, 2022).

On top of this, family members even described how they were told their deceased family member could not be embalmed or dressed because they were an intravenous drug user, and another told they could not touch their family members body due to concerns about infection (Templeton et al., 2017).

The expectation of being harshly judged can lead the bereaved to lie or keep their loved one’s cause of death private (Valentine et al., 2016). Many people also do not want their loved one to be defined by their drug use and the stigma attached to it (Templeton et al., 2017).

Not surprisingly, in one study relating to bereavement following fatal overdose, it was found that a lack of understanding and empathy was a factor that worsened the experience of grief (Templeton et al, 2017). Another study reaffirmed this, finding that the process of grief can be negatively impacted by stigmatising and harsh comments; comments which lead to feelings of guilt, shame and self-isolation, increasing the likelihood of health and social issues (Dyregrov & Selseng, 2022).

Where to from here?

An estimated 2 – 2.5 million people globally are bereaved by a drug-related death each year (Dyregrov & Selseng, 2022). Those mourning a stigmatised death remain vulnerable to feelings of shame and isolation as their grief is compounded by a general discomfort with the topic of death and the stigma their loved ones faced, in both life and death.

Is someone’s death less important, less sad, if it is drug-related, or some other stigmatised cause? Is someone’s grief less important? Of course not. Death is death; loss is loss. They are things we all face at some point, and the end result is the same. Stigmatised deaths don’t minimise grief, if anything, perhaps keeping it so private makes our grief even greater and feel more isolating.

Something I was recently introduced to is the death positive movement (Menzies & Menzies, 2021).

Spearheaded by the organisation Order of the Good Death, it is described as the belief that honest conversations about death are the cornerstone of a healthy society, and that it is not taboo or morbid to speak openly about it (Order of the Good Death, n.d.). Further, it is the belief that people should be given support during and after death, which includes being able to speak about your own grief (Order of the Good Death, n.d.).

There are 8 tenets of death positivity, and I will list the first 4 here:

1. I believe that by hiding death and dying behind closed doors we do more harm than good to our society
2. I believe that the culture of silence around death should be broken through discussion, gatherings, art, innovation, and scholarship
3. I believe that talking about and engaging with my inevitable death is not morbid, but displays a natural curiosity about the human condition
4. I believe that the dead body is not dangerous, and that everyone should be empowered (should they wish to be) to be involved in care of their own

(Order of the Good Death, n.d.).

Another aspect of this was the creation of death cafes, where people come together, have a tea or coffee and discuss their thoughts about death (Menzies & Menzies, 2021). The goal of these death cafes was described as being “To increase awareness of death with a view to helping people make the most of their (finite) lives” (Menzies & Menzies, 2021).

Last, death positivity urges us to “push back and engage with the systems and conditions that lead to “unacceptable” deaths resulting from violence, a lack of access to care, etc.” (Order of the Good Death, n.d.).

There have been a number of studies suggesting that continuing our bonds to our dead may in fact help us to deal with loss, and those who do so experience greater psychological wellbeing (Menzies & Menzies, 2021). This might include engaging with others who knew the deceased person, talking to the deceased person, tending their grave, and displaying photos and retaining keepsakes (Valentine et al., 2016). A sympathetic, non-judgmental environment can support this, at a time when those mourning need it most as they navigate the world without their loved one in it.

Conclusion

Working at WAAC on the Needle and Syringe Exchange Program and more broadly as an organisation, working with people living with HIV the topic of death comes up in our interactions with clients. In my experience our team is always open to a conversation about afterlife theories, and experiences with spirits and clairvoyants (regardless of belief). We’re also prepared to talk grief and loss among each other and with clients, providing a safe space to share those experiences.

Perhaps we even embody aspects of the death positive movement. Particularly through events like our Overdose Awareness Day morning tea, where we have a tea or coffee, something to eat, and remember loved ones lost.

Through the provision of Naloxone we support clients, who may come face-to-face with death, to prevent premature loss of life today and in the future – giving people another chance to make the most of their finite lives. In carrying out our job – engaging with clients and providing sterile equipment – we have a role in confronting the conditions that lead to those unacceptable deaths that arise from a lack of access to care – and stigma.

It is my hope that by confronting and sitting with the uncomfortable topic of death – especially stigmatised deaths – other people will feel less alone and be encouraged to speak more openly about their experience with death and grief

“The trauma said, ‘Don’t write these poems.
Nobody wants to hear you cry about the grief inside your bones.”

…

My bones said, “Write the poem.”

― Andrea Gibson, The Madness Vase