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Understanding & responding to adults bereaved through

substance use

Lorna Templeton

(on behalf of the project team)

SSA Annual Symposium, November 2014

The Project Team: Tony Walter, Christine Valentine, Lorna Templeton,

Amy Brickhill (University of Bath). Linda Bauld, Jennifer McKell, Allison Ford, Carole-

Anne Greenan (University of Stirling). Joan Hollywood (bereaved family member advisor). Gordon Hay, Richard Velleman (Consultants).

ESRC funded (2012-2015) – England & Scotland.

http://www.bath.ac.uk/cdas/research/understanding-those-bereaved-through-substance-misuse/

Context

A sizeable population, although no firm estimates of prevalence.

Lack of academic research, only a handful of studies.

Issue largely omitted from policy and practice, with some exceptions.

Research study overview

1. Phase 1: 100 in-depth qualitative interviews with adults who have experienced this type of bereavement (complete).

2. Phase 2: 6 focus groups with 40 professionals and bereaved people (complete).

3. Phase 3: working group to develop practice guidelines (in progress).

Interview sample, N=106

oFemale 79, Male 27 (age range 22-75). oDeceased: Male 79, Female 23 (age range 16-84).oMajority White British (interviewees & deceased).oTime since death: average 8 yrs (range 1 month to 30+ yrs). oRelationship of interviewee to deceased:

o56 parents (several couples interviewed together).o21 children (includes 1 adopted child).o13 spouses/partners (includes ex’s and 1 LGBT).o13 siblings (includes step-siblings).o6 friends.o3 nieces.

o12 in treatment and 9 in recovery (interviewees).oWide range of causes of death: alcohol featured in roughly half of the deaths, drug deaths predominantly involved opiates.

Findings: some emerging themes from interviews & focus groups

oDiversity of sample: characteristics, experiences & needs.oNegative impact of living with substance (mis)use can continue after death, affecting grieving & remembering.oCompounding factors:

oCircumstances of the death.oDiscourses of understanding substance use/addiction (both before & after death).oStigma (actual and perceived).

oWhat do this group need, and how should it be delivered?oCreative responses & other ‘positive’ outcomes.oIs this a unique bereavement?

Impact can continue at & beyond death“So for me when she first died it was a relief that that was over .....it is

difficult because you feel guilty for feeling like that.....you think it’s wrong to have feelings like that and therefore you feel that perhaps you

don’t have the right to grieve and be so upset.....it took me a while to realise that I had the right to be upset” (daughter)

“...I know it’s an unusual thing to say but I prefer it that he’s dead you know, it’s been so much more peaceful since he’s died, just to not have to witness someone’s profound suffering like that....it feels like he’s at

peace, that’s how it feels now” (son)

Addiction is a very hard thing to get through. But...you will always live in hope that they were going to turn their lives around. And that’s why I

supported him....many other people have said, well, I would have chucked him out a long time ago and said I don't want anything to do

with him. But I could never do that” (mother)

“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)

Discourses around ‘addiction’“I remember at the funeral I wanted any proceeds to go to

Nacoa [National Association for the Children of Alcoholics].....[but my] brother-in-law didn’t want the funeral to have any mention of alcohol. So I thought, this is what killed him but

we’re not to mention it” (ex-wife)

“alcoholism, it’s a hell of a problem to deal with. And I think anybody trying to deal with it has to accept that there are limits on what you can do because ultimately each person

chooses his own life. And I think that’s an important message....It may be that with all your best efforts the

problem will still be there and.....in the end it may result in death” (father)

“.....knowing that it was a disease and she couldn’t help herself....I think that was the first time in my life when I was

helped to realise it wasn’t my fault, it wasn’t my fault that she drank, to see more of alcoholism as a disease” (daughter)

Stigma“[people] shouldn’t, like I did.....stigmatise themselves, they shouldn’t put themselves down or worry about what other people are going to think.....

It’s so important to be able to talk about how you’re feeling and....not worry that you’re going to be judged for how you’re feeling, or that your

loved ones are going to be judged” (brother)

“…I just read, ‘Unemployed man dies of drug overdose’ and it was [my son]….so I wrote to the editor of the paper, I explained the type of

person [my son] was and I don’t think the main point about him was that he was unemployed, there was more to [him] than an

unemployed man.....[but] that headline is the headline they want, they don’t want this person to be an ordinary nice person, they want him to

be a drug addict” (father)

“And it’s just a horrible stigma, you get a label on you, you are labelled, especially by the police.....it’s as if when she died ‘Oh another one bites the dust’. That’s the impression we got you know when it all

happened, it was just horrible” (mother)

Support: mapping the response

Support: poor experiences

“I did feel desperately let down because....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)

“The police weren’t brilliant, the way they told my mum. She has a post office....a policeman came in and said ‘do you have any

relatives in [town]?’ She went ‘oh yes, my son’ and he just went ‘oh, well he’s been found dead’....He said this in the shop with

customers there” (sister)“it was just routine to them [policemen]....you are going to tell a

mother that her son just died, it doesn’t matter what kind of person she is or what kind of person he was, you try and show a bit of

compassion. You don’t just go in as if it was an ordinary run of the mill thing” (mother)

“I thought there is no emotion or anything with you....I just felt her mannerism wasn’t somebody with compassion and empathy, it

was just, you know, this is my job” (mother)

 

Support: making a difference“a person who helped us absolutely incredibly at the most crap

time was [my son’s] doctor. He was so understanding and we talked....that was the best counselling that we had” (mother)

“The doctor in A&E who signed his death... he said ‘This gentleman had died’ and that made such a difference to us. We

were upset and I thought he wasn’t referred to as ‘This drug addict has died’” (parents)

“But I found a very sympathetic, very lovely [undertaker] who was wonderful and who took care of everything. He was just incredibly empathetic and softly spoken and didn’t make any

assumptions about the situation” (mother)

“There were two policewomen who came and they stayed and they made us tea and they comforted us....[my son] was known

to the police 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, no. They couldn’t have

been more helpful” (mother)

Developing a better response, what’s needed?

1. “It’s everyone’s job”.2. Joined-up & well co-ordinated

response, nationally & locally.3. Need for a common language to

understand and to respond. 4. Tackle attitudes & stigma to

substance use/associated deaths. 5. Need for information, education,

awareness and understanding – about the nature of substance use but also grief and bereavement.

6. Manage diversity in this group of bereaved people.

7. Response needs to be immediate, responsive, flexible, not time-limited, respectful (to deceased and bereaved), personal, kind, compassionate.

“....the police, going back to when Rich died, never called him Richard; they called him

the body. And that was horrible. It was

depersonalised”

“When we did get to see him, the mortician brought him down,

and when we were ready to go he said, shall we go back,

then, Rich? And he said nice looking boy. I said, oh, thank

you”

(mother)

Presence of alcohol/drugs in other ways

Participants who themselves have/had alcohol problems – in treatment/recovery.Association between their use, and their treatment/recovery, and

the death. Influences experience of, impact of, and understanding of the

death. Important role to play in other ways, and for others who do not have

such problems.Coping/escapism.Presence of alcohol at funerals. Remembering.

“....he loves St Patrick’s Day and I usually take a beer with me. If it is St Patrick’s Day I will pour it on the grave. Because I know he’s an alcoholic, but at the end of the day that was his thing. Paddy’s Day was a good knees-up and why shouldn’t he after

he’s died” (niece)

Creative responses Writing – books, songs, letters, poetry. Contributing to memorial quilts & events. Making films. Raising money for related charities. Volunteering, training, working in these areas to help

others, setting up support/services.

“I decided I was going to write a book, which I have subsequently done… it is a book about loss by

bereavement, by addiction, drugs… I think a lot of people have found it helpful, actually. Loads of people have read

it and said that’s really helped me” (mother)

I write a lot of poetry about him. I write a lot of songs about him (niece)

Positive outcomes“....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 a lot of determination

and it has enabled me to achieve things in my life that I may not have done otherwise” (daughter)

“I think it has completely defined me....it made me grow up really quick.....I think as well I appreciate life because of it....it certainly has changed, defined who I am, not completely. I am who I am,

but it did shape my life definitely” (daughter)

“since my uncle died, I’ve turned my life around. I had nothing....my mental health was really quite severe. I was getting into lots of

debt and, when he passed away, I just realised that you need to be living. And the biggest thing I want to do is just make an impact

on other people’s lives and take care of people that are in the worst part of their lives....you know if I can help just at least one person and then I’ve done something good in the world” (niece)

Is this a unique bereavement?“...bereavement is a difficult thing for people to, or death is a difficult thing for people to deal with anyway, they react

weirdly to it. But the fact that it is death through an addiction I think emphasises that” (daughter)

“It would be good to have something like Cruse or bereavement counselling, but it would be good if somebody had a specialism in it because as I said there's always guilt

around death.....The people around them feel that they could have done something, and I think that’s a thing when anyone's abusing any substance....it's that support to really

know it's not their fault” (daughter)

“The big thing for us is that [our son] died; not how he died really” (parents)

Concluding thoughts This is a group who face several complex and

distressing dilemmas. Our research extends knowledge about bereavement

through substance use. Findings contribute to gaps in understanding sub-groups

of the bereaved, and theories of grief & bereavement. Similarities with other types of death, but there may be

factors which are unique to this type of death. This is a group lacking in support (before and after

death) and we hope that our study will make a contribution to raising awareness, resulting in greater attention within policy & practice.

“I noticed how lost the family were after this death. And we just didn’t have any support”(niece)