Dr Christine Valentine is Research Associate in the University of Bath's Centre for Death and Society (CDAS), part of the Department of Social and Policy Sciences.
According to popular wisdom death is the great leveller, affirming our common humanity whatever our status in life. But our recent study of people bereaved by a drug or alcohol-related death found it can also marginalise and stigmatise both those who have died and those left behind.
Our 2012-15 ESRC funded study [1] aimed to better understand and improve policy and practice for the families and individuals affected by a substance-related death. Interviews with 106 people bereaved by substance use found a failure of services to respond to the diversity of people’s experiences with particularly negative consequences for the bereaved [2]. To address this, the study engaged 40 practitioners via six focus groups to explore how better to support these bereaved people. A working group of 12 practitioners then developed best practice guidelines.
Stigma entails stereotyping and ‘othering’, recognising neither the shared humanity nor unique individuality of those belonging to certain groups. For example, press reporting of substance-related deaths is more likely to distance the reader than invite sympathy for grieving family members [3]. In defining the deceased only by their substance use, such reporting can be particularly distressing for bereaved family members in failing to do justice to the person they knew and loved. One bereaved father interviewed for our study recalled: "I just read 'Unemployed man dies of drug overdose' and read down through and it was [my son] and I don’t think the main point about him was that he was unemployed. There was more to [him] than an unemployed man."
Though increased cultural pluralism has brought greater awareness and appreciation of different ways of dealing with death, when it comes to deaths from substance use negative connotations of deviance predominate. In addition to the stigma of substance use and its association with reckless life-styles, the resulting deaths are considered self-inflicted and preventable. Reinforced by press reporting, those left behind remain particularly vulnerable to negative responses from the wider society, including pathologising or blaming the families for failing to prevent the death or even being complicit in some way. As one bereaved mother reported, “It would seem that they [mental health services] immediately went down the route of what’s going on in the family? …this is a family that aren’t functioning well together.” Such responses, while upsetting for bereaved families, are also limiting for the way we understand and manage death and loss in our society more generally.
That initiatives focus on preventing such deaths is understandable; in the UK nearly 12,000 such deaths were recorded in 2013, those relating to drugs rather than alcohol being the highest on record [4]; [5]; [6][i]. While there are no firm estimates of how many people have been affected by substance-related deaths, these mortality rates suggest a sizeable number. Yet they remain a hidden, neglected and ‘at-risk’ population in terms of the devastating effects of this kind of bereavement on health and well-being [7]. Important though treatment and prevention policies are, they are not always successful. As a bereaved father whose son died as a result of alcohol addiction said: "There are limits to what you can do… It may be that with all your best efforts the problem will still be there and … get worse and in the end it may result in death" ([8]). Do we then abandon those left behind after the death, regarding them as part of the problem rather than listening to and learning from their experiences?
To date little academic attention has been given to substance use bereavement. In contrast, a considerable body of work has highlighted the pressures experienced by families living with a member’s substance use [9], some of which has made a significant contribution to the work of drug and alcohol treatment services [10]; [11]. These pressures include the threat to family relationships, not knowing how to respond to the person’s substance use and grief for having lost that person to their substance use. From what is already known of families living with substance use it is clear they will already be depleted of resources when faced with the person’s death. As one bereaved mother reflected, "Addicted families have been bereaved for a very long time, they lost that person a long time ago...and so they have been grieving for a very long time."
Despite some practitioners’ growing awareness of what bereaved families may be coping with, austerity policies have left the organisations concerned under-resourced. While there have been some practice initiatives in both substance use and bereavement fields, such as annual memorial events, bereavement support groups and training programmes[ii], there is little in the way of evidence-based guidance for services dealing with substance-related deaths, substance use or bereavement support.
Evidence from the UK suggests that bereaved people as a whole are poorly served, often facing gaps and inconsistencies in service delivery [12]. For those bereaved through substance use, our research identified additional problems with both the system for processing such deaths and how the bereaved are treated. With regard to the system, responsibilities for dealing with these deaths and with those people left behind are split across disparate services, which can be divided into two broad categories:
1. Services focusing on the deceased, carrying out statutory procedures, such as establishing the cause of death and ensuring proper disposal of the body. This may involve paramedics, GPs, the police and the coroner (in England) or procurator fiscal (in Scotland), and pathologists. Newspaper reporters are responsible for reporting unexplained deaths, while undertakers look after the body and arrange its disposal.
2. Services for those left behind, including clergy or other religious officials providing funeral care, bereavement counsellors and support groups and drug and alcohol services where the bereaved person is in treatment for their own substance use. However, some interviewees reported that the contact they had with drug and alcohol treatment agencies when the person was alive was withdrawn and, with few bereavement services having knowledge of substance use issues, there was nowhere to turn.
Many of our interviewees encountered insensitive, judgmental and abrupt responses from a range of professionals and practitioners. Poor responses from those dealing with the death at or in the immediate aftermath (category 1) could be particularly undermining, the bereaved person being at their most vulnerable, in some cases having already experienced stigma before the death. To experience further stigma from services when bereaved is likely to be particularly distressing [13]; [14]. As one married couple conveyed, "It’s just a horrible stigma … you are labelled, especially by the police … it’s as if when he died, 'Oh another one bites the dust' … it was just horrible."
What was more, poor responses from professionals made it all the more difficult for interviewees to negotiate an unfamiliar, unwieldy, confusing and time-consuming process involving a range of separate organisations. This was particularly, though not solely, the case where the death was sudden and unexpected and drugs (rather than alcohol alone) were implicated. These unexplained deaths are more likely to involve official investigation by the police and coroner in England and the Procurator Fiscal Depute in Scotland. In such cases, the family home may be treated as a crime scene, the deceased’s body and possessions taken into custody and the funeral delayed until after the inquest. Such delays can create considerable uncertainty for the bereaved, who may feel under suspicion as well as deprived of their family member’s remains.
In being questioned about the kinds of support they needed, interviewees reported appreciating practitioners who showed compassion for their situation; adopted respectful and inclusive language; treated them as individuals and avoided making assumptions; and helped them navigate the ‘system’, in some cases working closely with other services to achieve a joined-up response. Yet, more often they reported treatment that was unkind, unhelpful, dismissive and demoralising. In response, practitioner focus groups highlighted the challenges of multi-agency working and how poor responses were, in part, linked to discrete services, each having their own particular working culture and identity. Communication between practitioners from different services was therefore often poor or lacking. Also many services remain uninformed about substance use bereavement, even those specialising in bereavement support.
There was general agreement that services should and could do more to better support those bereaved by substance use, some practitioners voicing their awareness of the difficulties these bereaved people faced. As a coroner’s officer said: "I come from a very narrow focus in terms of supporting people when they attend the inquest process, but…when I talk to people the one thing that they say is that they have absolutely no idea about what to expect, what’s going to happen, what the process will be and that’s on top of trying to grieve and...the stigma that surrounds people who have died through these circumstances". To tackle stigma and foster closer liaison between frontline services and addiction agencies it was felt that greater understanding of both the bereaved person’s predicament as well as each other’s roles was needed .
In response to our study’s findings, an inter-professional working group of twelve members developed practice guidelines [15]. Group members included a paramedic, two members of Police Scotland, a Senior Coroner’s Officer, a GP, a Funeral Director, a University Chaplain, a Senior Alcohol Policy and Research Officer, a Counsellor and Trainer in counselling and social care (who chaired the group), and three people working in the substance use field who were also bereaved by substance use. Reflecting a range of expertise and experience, the guidelines are being widely disseminated via practitioner networks across relevant services – and being enthusiastically received.
Written by practitioners for practitioners, the guidelines centralise the experiences of the bereaved people in question. They invite the reader to identify with the bereaved service user, while highlighting both the specific challenges these bereaved people face as well as the particularity of each service user’s experience. The guidelines capture both universal and diverse aspects of dying, death and bereavement, crucial for enhancing service provision. How far this will be achieved remains to be seen, but the guidelines testify to the willingness of those concerned to engage with this challenging and complex area despite its under-representation within the broader policy agenda.
Notes
[i] Actual numbers of both drug and alcohol-related deaths are likely to be far higher than official statistics suggest because some deaths are not recorded or categorised as being drug or alcohol-related and definitions of such deaths tend to vary (Corkery, J. (2008) UK drug-related mortality – issues of definition and classification. Drugs and Alcohol Today, 8(2), 17-25)
[ii] See e.g. Adfam; BTA (Bereaved Through Addiction); Cruse Bereavement Care; DrugFAM; FASS (Family Addiction Support Service); SFAD (Scottish Families Affected by Addiction).
References
[1] http://www.bath.ac.uk/cdas/research/understanding-those-bereaved-through-substance-misuse/
[2] Valentine C, Bauld L, Walter T. 2016a. Bereavement following substance misuse: a disenfranchised grief. Omega: Journal of Death Studies. 72:283–301. Available at: http://www.bath.ac.uk/cdas/documents/A_disenfranchised_Grief.pdf
[3] Guy, P. (2004) Bereavement Through Drug Use: Messages From Research. Practice 16(1): 43-54.
[4] ONS (2016) Alcohol-related Deaths in the United Kingdom: Registered in 2014. London: ONS; [cited 2016 Jan 29]. Available from: www.ons.gov.uk
[5] ONS (2015) Deaths Related to Drug Poisoning in England and Wales: 2014 Registrations. London: ONS; [cited 2016 Jan 29]. Available from: www.ons.gov.uk
[6] National Records of Scotland. 2014. Drug-Related Deaths in Scotland in 2013; [cited 2016 Jan 29]. Available from: www.nrscotland.gov.uk
[7] Templeton, L., Ford, A., McKell, j., Valentine, c., Walter, T., Velleman, R., Bauld, l., Hay, G. and Hollywood, J. (2016) Addiction Research and Theory, 24 (5): 341-354. Available at: http://www.tandfonline.com/doi/full/10.3109/16066359.2016.1153632
[8] Valentine C, Templeton L, Velleman R. 2016b. “There are limits on what you can do”: biographical reconstruction by those bereaved by alcohol-related deaths. In: Thurnell-Read T, editor. Drinking dilemmas: space, culture and identity. London: Routledge. p. 187–204. Available at: http://www.bath.ac.uk/cdas/documents/bereavement_project_15/12_There_Are_Limits_on_What_You_Can_Do_Biographical_reconstruction_by_those_bereaved_by_alcohol-related_deaths.pdf
[9]Arcidiacono, C., Velleman, R., Procentese, F. Albanesi, C. and Sommantico, M. (2009). Impact and Coping in Italian families of drug and alcohol users. Qualitative Research in Psychology 6(4): 260-280.
[10] Copello A, Templeton L, Orford J, Velleman R. (2010). The 5-step method: principles and practice. Drugs Education Prevention and Policy. 17:86–99.
[11] Orford, J., Velleman, R., Guillermina, N., Templeton, L. and Copello, A. (2012) Addiction in the family is a major but neglected contributor to the global burden of adult ill-health. Social Science and Medicine 78:70-77
[12] NCPC, (2014) Life After Death: Six steps to improve support in bereavement. London: The National Council for Palliative Care.
[13] Walter T, Ford A, Templeton L, Valentine C, Velleman R. 2015. Compassion or Stigma? How adults bereaved by alcohol or drugs experience services. Health and Social Care in the Community. Doi: 10.1111/hsc.12273
[14] Valentine, C. and Bauld, L., (2016) Marginalised Deaths and Policy, in Foster, L. and Woodthorpe, K. (Eds) (2016) Death and Social Policy in Challenging Times. New York, Basingstoke: Palgrave Macmillan. Available at: http://www.bath.ac.uk/cdas/documents/bereavement_project_15/Marginalised_Death_and_Policy.pdf
[15] Cartwright, P. (2015) Bereaved through substance use. Guidelines for those whose work brings them into contact with adults bereaved after a drug or alcohol-related death. University of Bath. Available at: http://www.bath.ac.uk/cdas/documents/bereaved-through-substance-use.pdf
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