1. BEREAVEMENT AFTER ALCOHOL AND OTHER DRUG-RELATED DEATHS
Christine Valentine
Colin Murray Parkes Open Meetings
12th March 2015

2. Sizeable, Yet hidden and neglected Group
Little research on the impact on families of losing a member to substance use
Little support – or recognition – in policy or practice
A few exceptions. E.g.
DrugFAM
Adfam ents/current_projects/bereavement
Bereavement Through Addiction (BTA) in Bristol
Cruse (England and Scotland)
SFAD aths

3. Overview of Study
Funded by ESRC( ) to study adult family members and others affected by the alcohol- or drug-related death of a loved one.
2 sites: SW England & Scotland.
Research team of 9, including 1 Bereaved family member; and an Advisory Group.
Twofold aim to
1: Understand the experiences and needs of those affected by the death of a loved one through substance-use.
2: Improve service delivery for this group of bereaved people.

4. THE PROJECT TEAM
Christine Valentine, Lorna Templeton, Tony Walter (University of Bath).
Linda Bauld, Jennifer McKell/Allison Ford(University of Stirling).
Joan Hollywood, Gordon Hay, Richard Velleman (Consultants)
bereaved-through-substance-misuse/

5. A Two-Phase Approach Phase 1:
Interviews with 106 bereaved family members in England and Scotland – largest known qualitative research sample of its kind.
Findings to inform Phase 2.
Phase 2:
Focus Groups with service personnel (some also bereaved).
Working group of 10 practitioners and bereaved people tasked with developing practice guidelines.

6. Phase 1 : Understanding
What makes these deaths so difficult to grieve? Our interview findings suggest 4 main factors:
Life: pressures of living and coping with the person’s substance use while they were alive.
Death: circumstances surrounding the death, including negotiating services.
Memory: remembering (formally and informally), a life that may be considered unfulfilled or wasted.
Stigma (actual and perceived): stigma associated with this type of death tends to be attached to bereaved family members as being in some way complicit - devaluing their grief and depriving them of social support.
Note: 4th factor, i.e. stigma, a key ingredient of the other 3 factors.

7. 1. Living with Substance Use
Impact of the death reflects differing experiences of living with substance misuse, for example
Alcohol use often long-standing & accompanied by other serious problems
Some families affected by more than one member’s substance use/death.
For some death may be expected and sense of already having lost the person to their addiction; for others unexpected, e.g. accidental overdose - parents unaware of substance use .
Families may not know how to respond to substance use and must cope with feeling that whatever course of action they took ultimately failed.
Demands of person’s substance use may threaten family cohesion as well as relationships beyond the family - sense of isolation.

8. Threat to family cohesion
…and gradually I felt sort of driven to almost a choice, you know, the drinking is causing great upset in the whole family. … Who do I look after? Do I sort of expend loads and loads of time and effort trying to rescue him from this situation or do I think about the other members of the family..? (father talking about son)
Sense of isolation
… I’d been up a lot of the night because Mum had been drunk and… I was very tired and I got to school the next day and I can remember thinking …I just can’t hold this all in and a teacher coming in and saying well so and so is going to be off school for a while because her Mum’s got cancer and me thinking oh god I really wish my Mum had cancer because then I could talk about it… say to people I can’t cope, I haven’t slept, do you know I had to cook all the meals at the weekend… and I couldn’t because I was completely embarrassed… (daughter talking about mother)

9. 2. Circumstances/Aftermath of Death
Family members’ experiences were often of ‘bad’ deaths, i.e. far removed from ideal of dying at home, with close others, peacefully, with dignity, etc. (though in some cases partially achieved)
More often the person had died alone or away from home, in the presence of professionals, without privacy, dignity or peace.
Encounters with professionals and service personnel often (though not always) insensitive and unhelpful.
Negotiating official procedures could be daunting due to complex and fragmented system, which could involve criminal investigation.

10. (Mother talking about son)
the person may have died alone
… the neighbours alerted that nobody had seen her for a few days, because she lived at the front of a set of flats, and so police broke in and found her, so that’s very sad… I still feel really bad that she just died on her own, and she wouldn’t have understood, she would have thought everyone had abandoned her because she never got that she actually drove everyone away. But … it was horrible and you could see when you went in the flat, there was where she must have fallen. (daughter talking about mother)
A far from peaceful death
So we agreed to having the machine turned off. And he died I think it was a day later... But it was awful, because when they switch the machine off, if you can picture a fish out of water, that’s what we were looking at. We had to watch him gasping and writhing for a day. And it was absolutely shocking… he didn’t slip away peacefully.
(Mother talking about son)

11. 3. The Memory
We know that cherishing fond memories helps us to find continuity and meaning in a loss – but what about remembering a life and death defined by substance use?
A mixed picture, i.e.
Some family members struggled with difficult memories, including the sense of waste of life.
Others found comfort through a continuing bond with the deceased.
Some were able to acknowledging some good coming out of the bad

12. The sense of waste of life
And having to get to grips with a death was overlaid with having to get to grips with the fact that this sense of a waste ... obviously there’s always the grief associated with the death of …any close member of your family… but also a sense of total waste of a life (father talking about son)
Good coming out of bad
But for me I wanted to understand why she drank ... I don’t have the answer to that but I think I’ve tried to understand a bit more about my family dynamic and ... going by how it’s affected me in positive ways as well as negative ways… would I change it? I would like some of the pain to have gone away but I do think the relationship I have with my mum has made me who I am and from that I have a lot of empathy and … determination and it has enabled me to achieve things in my life that I may not have done otherwise (daughter talking about mother)
A continuing bond
I just go on my own and have a chat to him…I will always visit his grave... If it’s looking tatty, I would always clean it. I will always take him a little something and … write him a poem or a letter, because he’s still there (Niece talking about uncle).

13. 4. Stigmatised Deaths and Devalued Grief
Cultural perceptions of substance use life-style, reinforced by media reporting, more likely to encourage blaming rather than sympathising with bereaved family:
Sense of isolation can make it harder to share experiences with others, both within and beyond the family.
Exacerbated by insensitive responses of professionals e.g. police; the coroner; even clergy and counselling professionals
Self-stigma and perceived responses of others.
Challenging stigma and stereotypical assumptions to assert that the person was more than their addiction.

14. Stigma within the family
My sister never said anything about him…a lot of people think, well he caused his own death … Oh well they brought it on themselves…So I don’t think you get the sympathy that you would get normally.(Mother, talking about son)
Challenging stigma
I think I was really conscious of the fact that I didn’t want anyone to think just because he was an alcoholic and just because he died young doesn’t make him a bad dad, he was a fantastic father, he really was.... and I wanted people [at the funeral] to know how special he was to us”. (son, talking about father)

15. In Pairs
If you have come across this type of bereavement before, either in you work or personally, what impact did it have on you? If you have not come across this type of bereavement before, then what thoughts/feelings does it evoke for you?
What are - or what do you imagine might be – particularly difficult for family members and individuals bereaved after an alcohol and/or drug related death?
 In light of your answer to 2. what would you see as being important to consider when working to support someone who is coping with this type of loss?

16. Phase 2: Responding From the interviews we have identified that
Responses of professionals in the aftermath of a death made a big difference to the way people coped with their grief.
This depended on whether they encountered common humanity, i.e. kindness, concern, tact, or stereotyping/othering, i.e. abrupt, off-hand treatment.
What they appreciated was
Being kept informed about what was happening.
Professionals being available and taking time.
Being treated with fairness and sensitivity – particularly by the Media.
Help with negotiating a complex and largely fragmented system (refer to map)

17. Mapping the Response

18. Kindness/tact or Othering
“There seemed to be a lot of policemen and they said we’re searching the house. I said, have you got a search warrant? He said we don't need a search warrant. I questioned…how they could do this, but they were very - they treated us terribly…
And in contrast to that, as we were going into the house…the paramedic from the ambulance came out... And he stopped and he said I’m so sorry…I did everything I could. But he said, you know, he’d been there some time. It was quite the opposite of the police.” (Mother talking about son)

19. Stereotyping or common humanity?
“The Police were very much of the opinion that this was yet another junkie. Clearly didn’t like him because he had a history. X is a very small town so he was well known for all the things that he had been involved in.” (Mother talking about son)
“There were two policewomen who came and they stayed and they made us tea and they comforted us. And he (son) was known to the police as well because he had been an addict… he had been in trouble and that’s awful as a mother. You feel like society looks down on you. But I didn’t get that sense this time... They were really, they couldn’t have been more helpful.” (mother talking about son)

20. Keeping Family/close others informed
“.... I did feel desperately let down because all I know the facts are that there was a young man fighting for his life and surely somebody in that A&E department would have had the decency to say, ‘Well I think he needs next of kin’ but no, they didn’t…” (Mother talking about son)
“I tried to find out what happened, so I phoned the police to find out and to query some stuff. And they in turn contacted the doctor who done the autopsy who in turn contacted me and then tried to explain. So the doctor and the procurator fiscal, they helped me no end” (Father talking about son)

21. Being Available/Taking Time
“But a person who helped us incredibly at the most crap time was [my son’s] doctor …he came round and he was absolutely incredible. He was so understanding and we talked…that was the best counselling that we had” (Mother, talking about son). “You know…my – and my son’s - GP never visited, never phoned, never came near when my son died....I came back from the undertakers and we got a message from one of the doctors, an ansaphone message to say oh Hi Doctor (X) here, yes I was supposed to phone you yesterday but I didn’t, sorry, I am phoning today, you are obviously not in, just to let you know tomorrow we are running industrial action so if you need a doctor phone on Monday” (Mother, talking about son).

22. WHAT ABOUT THOSE WHOSE WORK DOES FOCUS ON THE BEREAVED?
“I went for an assessment and......and I haven’t heard anything since...[that was] about four months ago”
(Mother, talking about counselling support)
“This lady who was supposed to be a trained counsellor was evidently making her own assumptions about what kind of person he was, and that was clearly in line with the commonly held stereotype of a drug addict.”
(Sister, talking about counsellor)

23. What do professionals Say?
From our focus groups we learned that
Dealing with substance use deaths only a small part of workload for ‘front-line staff, e.g. ambulance crew, A&E, police, coroner, local journalists, who are required to focus on dying/deceased, not bereaved.
So presence of mind needed to shift from usual work mode:
e.g. Police delivering ‘bad news’
Newspaper reporters working to strict word and time limits
Coroners working within new time constraints

24. Stigma as Major Obstacle
Stigma linked to stress and strain of working in fragmented system –
each service has own occupational culture/language and may know little about other parts of the system.
little openness, exchange or mutuality in times of austerity and targets.
A situation that perpetuates lack of understanding and awareness
“For me you have to strip it right back to raising awareness and getting rid of stigma…because society creates that and I think that environment is the thing that needs to go”

25. (In Light of Findings) How do we respond?
Main objective to produce guidelines for improving support for this group.
To be developed by Working Group of 10 members, including police officer, funeral director, senior coroner’s officer, GP, chaplain, paramedic and practitioners providing drug/alcohol or bereavement support
Based on 5 key messages identified from interview and focus group data.

26. Our 5 Key Messages
Show kindness and compassion – regardless of role/position and duties remember you are dealing with another human at a particularly vulnerable time for them and treat them with empathy and respect.
Consider your language – language can marginalise, stigmatise and pass judgment.
Respond to the bereaved person as an individual not a category - people’s experiences and needs are diverse, e.g. do not make assumptions about who is directly affected by the death /may need support; or about the deceased person’s life.
It’s everyone’s responsibility – do not use the excuse that it’s someone else’s job. Respond with empathy and respect and do what you can to help bereaved person find out what they need to know/do next - challenges current fragmentation of services and links to final message
Work together – to create a joined-up response.

27. Pair/Group work
Discuss the messages with reference to the following two questions:
What do you feel are the obstacles to getting each of these messages across?
To what extent are these messages relevant to your own work?

28. One Notable Feature of the Study
Extent to which all those who took part have supported and contributed to the project
“....one of the things that sticks in my mind about my mum’s death is the undignified way she died and how I should have had more of a voice to have done something about that......to me if I can talk about some of that, that maybe produces some guidelines that makes something different for somebody else, that would be a really positive thing to have done” (daughter)

29. Thank you!
Questions?