“I’ve never been a problem patient”: experiences of end of life care Dr Jo Ashby,

1. “I’ve never been a problem patient”: experiences of end of life care Dr Jo Ashby, Dr Sam Wright and Amanda Clayson #EOLC2018

2. The research (strand 3) • To learn and understand more around the complexities of delivering end-of-life care to people with alcohol and other drug problems • Qualitatively driven - talking to people with a life-limiting conditions/end of life and alcohol/other drug problems

3. Ethical/moral challenges • How do you ensure that people at the end of life have the opportunity to take part in research respectfully? • How to define ‘end of life’ especially for those who do not engage with ‘traditional processes’ can be more typical of substance users? • Moral positioning of substance users/misusers • How do you approach initial conversations and guide the interview itself? • How do you look after yourself as a researcher when doing the fieldwork?

4. Person-centred Evolving Method • A process – ongoing reflection on ethics and use of process consent approach specifically commensurate to this kind of research work • Much of the literature focuses on ethical categories – important but does not account for the fluidity of chronically/ terminally ill • Beginning with initial ‘conversations’ and follow-up discussions about possible options – being flexible /available • Open mindedness around data collection/interview schedule/questioning • Follow up interviews- a chance to ‘pick up where we left off’ • Involvement of family members/carers

5. People with experience 11 PWE 7 male 4 female 4 in a hospice 4 in the community 3 in SU service 6 = alcohol 1= cannabis 3 = illegal opiates 1= polydrug use

6. Current health and care

7. Main analytical themes

8. Anticipation of discrimination (Jake,71) Anticipation of discrimination was evident, carrying identity of drug user : thus it was important that Jake positioned himself as a ‘good patient’: ‘I’ve been in hospital a few times on and off over the years for all kinds of different things but as I say, I’ve never been a problem patient … on record, on my files as an IV user and yet they were giving me morphine … but the fact that I wasn’t abusing it, I wasn’t asking for it every two minutes … These look at me just like the next man … maybe the majority of them have no reason to have access to my file’

9. Perceived lack of compassion (Jake, 71) • 6 months later they told me about this place (hospice) and said “how do you feel about going there?” … I was scratching my head thinking, “why do I need to go to a hospice?” … the nurse explained, she said you know you’re very ill?” and I’ve flippantly remarked, “no shit” … my heart is working at 14%, I know I’m ill”, she went, “no you’re really ill”, she went, “you could have as little as a year to three years to live” • I had this conversation with possibly half a dozen people at the hospital and at no time did anybody ever say, “the likelihood of you actually being here in ten years is next to zero” • It came across as almost flippantly mentioned but I think it was more a case of I think she presumed that I already knew.

10. Understanding substance use from end of life perspective: late presentation • ‘It pretty much all started about May this year, I was ill for about ten days with flu-like symptoms but I’m not a man-flu type person and this was quite severe. What had struck me down, there was other things like vomiting that made me think it wasn’t just flu. Just over a week and I went to a friend’s and said “do you mind if I stay for a few days? I’m really not feeling good”, I live on my own and I should put that in. I said “I’d just feel a bit better if there was somebody to keep an eye on me” and he said “yes”, obviously “stay as long as you like.” Rob,

11. Barbara (57): Understanding her addiction • This is where the drink kicked in, • Took over because I could not cope, I didn’t know what to do • … my only way of dealing with it was drink, drink, drink, drink, but I became dependent • But at that particular time, I didn’t know what alcohol dependency was, • I was like yes, I knew I’d got a drink problem but I wasn’t…, I wasn’t … • I didn’t go to the doctors because I didn’t think a doctor was needed, • I just had this dependency on alcohol because every time I stopped drinking, every time I got up in the morning, • I’d start to shake, “what the hell’s this” “what’s this?”, and I’d have panic attacks and I’m thinking “what’s this” • I didn’t know what a panic was and so my coping mechanism was • “Ooh if I have a drink, the panic attack goes away” and that was how it started

12. Needing knowledge • After I’d had all my drains done and I’d been told I’d got cirrhosis, I didn’t really know much about cirrhosis, • The doctors told me “you’ve got ascites” • I thought, “what the hell is ascites?” • I couldn’t spell it never mind know it at the time • And I was discharged from the hospital after two weeks of being drained. • … back to my dad said “ok I’ve got cirrhosis, I’ve been drained” • And within four weeks I was back in again because I was given no knowledge of diet, such as low salt, you can’t do this, you can’t do that • I didn’t pick up a drink but my stomach grew and grew and I thought • “hang on a minute what’s going on here?” • So I was back in again for another four weeks, where I had another two drains and I said to them look, • “I’m not leaving this hospital until somebody tells me what is going on”

13. To know me, you need to know my story … • I went to see the same gastroenterologist in 2014, • my sister came with me and I always remember his words, • He said “yes I remember you in 2008” • He’s treated me as another person who just drank • He didn’t know my background, he didn’t know I was abused mentally and physically. • He didn’t know anything, but he just, he just saw a six stone alcoholic and that is all he could see • There was no, no delving into my past • And his words were in 2010, when I left, • He said “we’ll discharge you now” he said, “but no doubt we’ll see you again in the future” • Now how un-motivational is that?

14. ‘They don’t judge me like that’ • I think in hospital, liver unit, they don’t have a liver unit, honestly, they only have a gastroenterology, • It’s horrible! It’s horrible to be spoken to like that! • Whereas the liver unit, they don’t look at you like that, you know, • I honestly don’t, I don’t drink, I haven’t had, I don’t touch the drink now for nearly a year but they don’t judge me like that, • They never have, they’ve looked at me as another patient. • But they, you know, they’ve never really said to me, “well, how did you start drinking in 2008?” • It was just a bit of background that they were after

15. Emerging themes: Late presentation, unpredictable trajectories (1) Operating within a rigid treatment/healthcare system • Anticipation of negative attitudes / discrimination – leading to late presentation • Poor mobility / lack of confidence/knowledge in accessing services (appointments etc) • Passivity in patient role: unable to judge health priorities (2) Enhancing care needs • The need for compassion to effectively support – avoiding the ‘undeserving’ identity • The need for holistic approaches to address complex needs (i.e. SU and Palliative care) • Families ill-prepared to provide support; unlikely to seek help

16. Implications for policy and practice • Practice requires more compassionate care approaches to substance users • Beginning to ask: is more training around attitudes / understanding identity needed? • Practitioner training – deconstructing/reconstructing substance misusers? • Better and more effective lines of communication regarding end of life/ diagnosis/prognosis • Guidance to help communication with families/carers – how to tell children etc. • Flexibility in support/treatment – time, space and place need re-thinking in terms of adaptability / availability of services.

17. Summary • Complex interaction of multiple physical and mental health needs, self-identity and social support In a context of: • Single-issue treatment pathways requiring high levels of understanding and assertiveness to identify different health needs and care priorities. • Holistic approaches needed for complex needs, communication; hospitals particularly perceived as poor • Without coordination, patients are vulnerable to poor (or in some cases non-existent) care.

18. Thank you • Professor Sarah Galvani • Email: s.galvani@mmu.ac.uk • Tel: 0161 247 2579 • Twitter: @SarahGalvani @SUABManMet • Website: www.suab.com • Dr Jo Ashby • Email: j.ashby@mmu.ac.uk • Tel: 0161 247 2594 • Twitter: @J0ashby @SUABManMet