1. A Matter of Care? Health Professionals’ and Patients’ Perspectives on ‘Care’ in the Context of Discharge Against Medical Advice. Dr Laura Machin, Dr David Warriner, Steffi Siby, Emily Ford

2. The Social and Ethical Aspects of Self- Discharge Against Medical Advice Started Feb 2012, funded by Lancaster University Early Career Small Grant Scheme, collaborating with Dr David Warriner, Emily Ford, and Steffi Siby Interdisciplinary in nature Project Aims: – How do self-dischargers and health professionals understand and make sense of the concepts ‘self-discharge’, ‘self-dischargers’, and the self-discharge process? Institutional ethical approval, and R&D approval granted 33 qualitative interviews with: – Self dischargers (12), – NOK of self-dischargers (4), – Health professionals (17) consultants, foundation year doctors, gps, hospital managers, senior nurses, & registrars – across two NHS Trusts in England (4 hospital sites) – range of medical specialities / hospital wards Transcribed and coded for themes

3. Process Self-discharge in context: – Approx. 1 – 2% of patients decide not to follow health professionals’ advice each year – Particular sections of society thought to be more vulnerable to self-discharging – Self-dischargers have higher readmission and in- hospital mortality rates – The reasons given for self-discharge include long waiting times, poor bedside manner, and failure of communication amongst hospital staff What is Self-Discharge?

4. Why Look at Self-Discharge in order to Explore ‘Care’? Deconstruct the concept of ‘care’ – Meanings – Overcome ambiguity – Contribution Challenge existing portrayals surrounding self-discharge

5. Existing Concepts of ‘Care’ Contract of care – Social contract (Sullivan, 2000) – Just doing the job paid for? (Downie, 1986; Gillon, 1986) Standard of care – Minimum standard Duty of care – Professional guidance e.g. Hippocratic Oath, GMC “the patient is the first concern, and to work in ways which best serve the patient’s interests.” “Ethical foundations of the duty to provide care…is the principle of beneficence, which recognises and defines the special moral obligation on the part of HCPs to further the welfare of patients and to advance patients’ well-being” (Ruderman et al, 2006) Expectations Contract of care – Requirements Standard of care – Likelihoods Duty of care – Beliefs / values – An absolute duty? (Sokol, 2011; Upfold, 2002) “the public is asking for a return of medical professionalism, with its core values of scientific expertise and altruism” (Cruess & Cruess, 2000) – unrealistic / outdated?

6. A Contract of ‘Care’: Fulfilled “We’re not obliged to do anything. We’re not obliged to give medicines. We’re not obliged to give transport.” (HP_01_MGR_MB) “Once the patient has left the hospital…[and] I’ve done whatever I can without leaving the hospital it’s up to the patient then. I’m employed and under contract to fulfil the duties as a hospital based practitioner…” (HP_06_REG_STH)

7. A Contract of ‘Care’: Broken “There should be a meaningful ‘contract’ between the patients and the health provider and if that breaks down nobody is bound by that.” (HP_01_GP) “I’m sure it’s about self-protection for the hospital and the practitioner. That they’re saying that the patient must take responsibility for their own actions and that we couldn’t be liable. So I think it’s very much about protecting our interests rather than anything else.” (HP_08_Con_STH)

8. A Standard of ‘Care’: Minimum “…it’s a L shaped unit…So they [patients] can’t always actually see what we’re doing. So the layout sometimes doesn’t help us and sometimes they get frustrated and think no one is seeing me. But we know where you are. We check on you every hour as a minimum but we don’t necessarily physically need to come and do something to you every hour.” (HP_01_MGR) “…they were constantly monitoring my blood. I was given antibiotics. I had drips. I had catheters. So there was some care but I didn’t feel like it was happening. It was like the minimum that could happen, happened.” (SDgr_10_F)

9. A Standard of ‘Care’: Breached “I didn’t feel that it was actually healthy to be in there, to be honest with you. I felt that the place wasn’t as clean as I would have hoped it would have been. I was in dirty sheets. The operation that I’d had, I had a pack put in and I had the pack taken out in the same bed sheets that I was in. I was obviously bleeding quite a bit so I had bloody sheets. I’d taken off the gown that I was wearing when I went down for the operation and I’d put it on the floor because I didn’t know where else to put it so it was basically by me bed all day. And even though nurses had been in and out it hadn’t been picked up or taken away. It’s not very pleasant.” (SDgr_01_F) “Well, I need to go to the toilet a lot as I’ve got a weak bladder and every time I pressed for the bedpan they used to come up grumbling. You don’t want to go again already. I said I do. Then they shoved it under and I was sort of lying up with this bedpan stuck under me. Well, nobody can pee upward can they.” (SDgr_02_F) “…she sort of stripped me off and then someone said the doctor is here so she said I’ll have to leave you for a minute and she dashed off and left me. So I was sat there with nothing on for ages” (SDgr_02_F)

10. A Duty of ‘Care’: Boundary-less “Personally, I think we still have a responsibility for doing what we can which is why I think it’s appropriate to contact the patient’s GP. Assuming that you’ve given them tablets, given them advice, advise them to go to the GP. I think to simply say, right, you’ve discharged it’s your fault. I think we’re actually failing if we do that…I think we have a duty of care.” (HP_04_NURSE_STH) “I think we’ve got a duty beyond [the hospital]…we endeavour to communicate with their GP and any other medical team they may be involved with so that they get appropriate follow up.” (HP_08_CON_STH)

11. A Duty of ‘Care’: Diminishing? “I wouldn’t say we’ve got better, I think we’ve got more worried…I imagine 20 or 30 years ago if somebody wanted to self-discharge we acted more out of the patient’s interest than our own interests. I think now what happens in hospitals a lot is…that they’re number one priority is to cover their back and the number two attitude is to cover the patient’s back. And I think that this shift has become as medical-legal activity has increased. No one likes complaints. Nobody wants to be criticised…we’ve just become more worried because of that and therefore we act more defensively.(HP_05_REG_STH) “I’d rather them go home with medication even if they are discharging against our advice. Because it’s a nurse’s instinct and you’re not going to let someone suffer.” (HP_09_NURSE_STH)

12. Components of ‘Care’ Structural – Staffing, funding, policies Motivation – Contractual, defensive, altruistic, obligation Punitive – Litigation, corners’ courts Active / Passive – Monitoring, equipment, Physicality Spatial – Physical layout of hospitals, wards, rooms – Visibility Temporal – Length of stay Boundaries – Ward, hospital grounds, home Identity / relationship – NOK, GP What does this mean when understanding self-discharge? Can it account for the negative portrayals of self-discharge in the literature?