Who supports dying substance users? Drug using identities and ...

Who supports dying substance users? Drug using identities and ...

Who supports dying substance users? Drug using identities and end of life care. Sarah Galvani Professor of Adult Social Care Manchester Metropolitan University, England MMU research team: Dr Lucy Webb, Dr Jo Ashby, Prof Josie Tetley, Ms Lorna Templeton, Dr Sam Wright, Dr Gemma Yarwood, Ms Amanda Clayson, Dr Marian Peacock, Mr Gary Witham, Prof Carol Haigh Background Purpose: To improve and support service responses and reduce inequalities for people with substance use problems, their families and carers, receiving, or in need of, end of life care.

Exploratory study alongside 3 hospices, 3 substance use agencies, and a community organisation facilitating access to people outside services Methodology Methods ( = complete; A = analysis; O = ongoing) 1. What does the existing international research and wider literature tell us about current responses to end of life care for people with substance problems? 2. How many people with substance related chronic or terminal illness are receiving, or in need of, end of life care in the UK? 3. How do people with substance problems, past or

present, experience end of life care? 4. What is experience of family members, friends and carers supporting a relative with both issues? Rapid Evidence Assessment (literature review) Key Informant Semi-Structured Interviews 5. What are the challenges and opportunities professionals face supporting people with substance problems and chronic or terminal illness? Online or paper-based survey Focus groups Individual semi-structured interviews

Progress Research question A Secondary analysis of existing datasets in substance use and palliative care Individual unstructured interviews

Digital stories Secondary analysis of qualitative data (SAQD) Individual unstructured interviews A O A A O O Focus today Do people with substance problems have access to the same end of life care as non-substance using peers?

Drawn from two sources of qualitative data: KI Interviews Professionals Focus groups Headlines/key messages only Key informant interviews (KI) 17 interviews including 15 professionals, 1 service user and 1 family (3 people mum, dad, nephew) Hugely diverse group from social worker to coroner to liver specialist (Not) talking about end of life care and substance use Receiving/giving an EoL diagnosis; talking about death and dying; bluntness/ honesty sometimes without compassion; care planning Managing and developing care responses

Person-centred, joined up working, pain and symptom management, Professional perceptions of the client group Range of negative perceptions; impact on professional approach Commissioning and service provision landscape Cuts; lack of staff and resources; stretched and fragmented services Senior specialist in palliative care a health service that is designed around schedules and appointments, dont necessarily work for people who have more chaotic lifestylesI think what I'm not sure about is whether the system yet sees this group of people as being a group that needs to be looked

after properly, further upstream, in order to prevent this or whether it simply sees it as a problem we need to kind of get rid of if you know what I mean. We dont, as a rule, have a problem with the fact that when somebodys old and frail, it takes longer to sort them out, as a society we can just about cope with that. We cant seem to cope with the fact that people with complex problems need more time. Professionals in partner agencies Six focus groups to date 3 in hospices and 3 in SU services Total of 33 people so far ranging from social workers to senior nurses and recovery workers Mismatch with health or EoL service ethos or criteria

Chaotic lifestyles affect appointment attendance - difficult to discuss EoL if do not attend; not fitting criteria for hospice admission Cancer dominated EoL services; differences between acute and palliative care responses Fluctuating capacity of service user group people with SU probs and sometimes people with life limiting illness not predictable Frustration and emotional strain for professionals Helping too late; people who dont want to stop; impact on responses Lack of knowledge and resources No routine questioning realisation that this was needed; Training needed not equipped to discuss other issue; different cultural issues; partnership working with other specialist group; care pathway needed;

Professionals It sounds like its almost a judgemental thing that happens. They might be dying of cancer, but because its, maybe their GP has seen them right the way through and they know theyve been alcohol dependent, theres almost a kind of well, you brought it on yourself otherwise why are we not getting these referrals? (Hospice at Home staff) You know when we say we dont come across it that often, if we actually went around the servicethere will be a number of people. (Substance Use staff) Summative reflections Do people with substance problems have access to the same end of life

care as non-substance using peers? Probably not Difficult to tell from relatively small numbers of qualitative data Some people self-selecting out due to fears and expectations Dominance of cancer care in services excludes some people Some people not referred to EoL services due to judgemental attitudes No routine questioning Hospice staff appear accepting and not judgemental within limits, e.g. type of substance used, challenging behaviour on wards; good practice evident

Substance use services working with complex health conditions but not exploring/ working with EoL care routinely Experiences of hospital staff and practice are poor reportedly Thank you! Project finishes spring 2018 [email protected] Tel: +44 7775 680418 SUAB European Network free membership email [email protected] People with lived experience (PWE)

10 interviews so far: 4 hospice, 3 substance use services, 4 community networking (ie. outside of services). 6 men, 4 women. Six had problems with alcohol current or past, rest drugs. Age range from 38-71 yrs. EoL conditions include: liver failure, cancers, heart failure, multiple sclerosis, COPD, aneurysm, Wernickes encephalopathy. Hospice experiences overall are good non-judgemental Age gap daunting for younger users; some PWE not open about substance use; Hospital experiences not as good Attitudes of staff; medical care poor; communication poor Home living No joint working of community services; little support in community;

complex family dynamics; EoL not being addressed focus on drug treatment Person in hospice I went through a bad time in [hospital] toxins gone to my head, must have been off my liver, early hours one morning I went crackers, and thats not like me at all, I didnt even know what was going on and Id hold my hands up if I knew what was going on and last time I went into the same ward, just after Christmas, I overheard what one of them said when I went in, she walked past and she went, oh fucking hell, hes here, that was disgusting. Persons experience of hospital

I was discharged in 2010 and I had no care whatsoever and its only me demanding blood tests, that I was then told this isn't right I demanded to be put into the [hospital] and I'm glad I did because I wouldn't have known I was end stage, I wouldn't have known anything about care, about the diet that Ive got to be on, what to do and what not to do. Family members, friends, carers (FMFCs) Phase 1 findings secondary analysis of 93 interviews with family members bereaved through substance use ESRC-funded project Missed opportunities to intervene No hospice deaths majority died at home or hospital

No conversations about palliative or end of life care known even when family and PWE presented repeatedly to services; stigmatised Family members having to strongly advocate for better care Families often not getting any support in their own right Only 18/93 cases was evidence of communicating EoL care to the families Isolation, stigma, conflicted, prolonged strain, shock, guilt, regret Few examples of compassion and care for FMFCs Wife taking about husbands death in hospital ...he went and he just tried to make himself a bed in the bathroom. And I came out and said, Hes really suffering. He just wanted to be private. He needs dignity. And they said, Well he cant have

dignity. And I said, Why cant he go in that room? Well because theres someone else in there. I said, But that person doesnt need the room. And in the end I went up to the man, Do you mind? My husband is actually dying. He said, No, of course not. I dont mind at all. So I managed to get him the room, but I had to force it because they couldnt care less. Mother of son who died aged 49 from acute alcohol toxicity There was that Doctor who wouldnt help me, and I really was in a terrible state, you know. I couldnt eat, I couldnt sleep but I kept on the go all the time, my stomach used to turn over and I

could hear my heart beating you know. I would go to sleep for a couple of hours, wake up, go in and see if he [son] was alright. Senior substance use specialist Also, the stigmatisation that exists alongside it, so you've got this service for normal patients, but not for the stigmatised. It was always the same and it started to occur to me that we need to be developing services for that, provide the same level of care around end of life for people with drug and alcohol problems than it would if they were dying from anything else.

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