Jane Seymour Senior Lecturer in Palliative Care University of Sheffield

1. Protecting personhood at the end of life: older adults’ accounts of technologies, practices and places of care Jane Seymour Senior Lecturer in Palliative Care University of Sheffield

2. Technology and natural death: a study of older people Research team: Jane Seymour, Merryn Gott, Gary Bellamy, David Clark, Sam Ahmedzai. Advisory group: Doris Adams, Alan Hindmarch, Margaret Lloyd,Marian Neale, Stuart Parker, Sheila Payne, Ivy Sharpe, Don Thompson

3. To explore the beliefs and understandings older people express about ‘life prolonging’ and ‘basic care’ technologies in end-of-life management.  To explore what risks and benefits older people associate with regard to the application of these technologies during end-of-life care. To explore whether older people are able to express preferences with regard to the use of these technologies during end of life care, and what form these take. To explore whether older people express ideas about ‘natural death’ and draw distinctions between natural and unnaturaltechnologies. Research Objectives

4. Why are ‘places’ of care important? • They limit possibilities surrounding ‘quality’ care and the degree of comfort that may be achieved for a dying person. • Types of place are linked to particular types of care practice and interpersonal relationships that influence the experience of mortal illness, death and bereavement.

5. Some ‘background’ questions • What issues are involved in talking to older adults about end of life care? • Dying in old age fits poorly with popular notions of ‘good death’: what perspectives do older adults have on this? • Place of care is one aspect of disadvantage among people with palliative care needs: what does this mean for older adults? • What issues are involved in informal care-giving to older adults at the end of life?

6. This paper looks at… • ‘Preferences’ for place of care during dying • Personhood, body-practices and place • Places of care and decisions about end of life care

7. Method: 2 phase qualitative study • Focus groups with 32 older people or their representatives who belonged to purposively selected community groups in Sheffield. Phase 1 • Interviews with 45 older people within the age groups 65-74; 75-84 and 85+ years. • Recruited from GP’s lists in 3 contrasting areas of Sheffield. Phase 2

8. Who took part? 44 participants reported good health; 32 fair or poor health, 1 did not comment 71 reported their ethnicity as ‘white’; 2 as ‘Irish’; 3 as ‘Black Caribbean’ or ‘Black British’, 1 did not comment Among interviewees: 19 lived in an area of high deprivation; 8 in an area of moderate deprivation; 18 in an area of low deprivation. 7 interviewees lived in sheltered, residential or nursing home accommodation

9. ‘Preferences’ for places of care • Home was linked to symbolic meanings: presence of loved ones, independence, familiarity, repository of memories, support of ‘self’ • However, a range of practical and moral problems were associated with care at home

10. Turning home into a ‘hospital’ Joan: I had to make an effort at a time when I didn’t want to talk to anybody, I sort of kept going, welcoming everybody and making them coffee and everything at a time when I wanted to shut the door and be on my own….We reached a stage where this hospice at home took over and they just literally moved in all the equipment that they needed to look after [husband]. It was just like him being in [hospice] or in hospital. (Interview 17: woman 65-74 years, area of moderate deprivation)

11. Intimate care and adult children Tina: …people of this age don’t want, they want their partner with them; they don’t want their children there because there’s a lot of embarrassing things, and they don’t want their sons and daughters attending to them, if you know what I mean. Personal things. (Interview 35: woman 65-74 years, area of low deprivation)

12. The ‘stranger’ problem: one solution Colette: Well they know their home they don't like changes, and they don't want strangers looking after them or washing them and one thing or another. But they would let somebody who they knew wash them - I used to wash them. One of my patients, well clients we used to call them, they wouldn't let the nurse bath them but they used to let me give them a bed bath- they didn't want the nurse that was coming for that job, they didn't want her because they didn't know her. (Focus group 2)

13. The problem of the unbounded body Fred: That’s when I would want to go in hospital, when I thought I was being too much of a trouble, you know, if you get incontinent and if you get … well having to wash beds and things everyday … in our situation we haven’t got a dryer, but there’s only two of us, we manage all right. But I don’t know how we go on if we … and this would worry me, it would kill me if I were waking up every morning to a problem like that and knowing Fay had got to try wash the sheets and things, day after day, no drying weather and things like that. (Interview 6, Man aged 65-74, deprived locality)

14. The ‘double jeopardy’ of ageing and illness Leon: I would sooner be at home than here. I’ve been here too long now, nearly seven year, it’s a long time. Gary: What is it about here that you don’t like? Leon: When they’re old people, I don’t like old people me, silly that, isn’t it? … I don’t like old people. Can’t get on with ’em. I’d sooner be with young people. Gary: You’d sooner be around young people? Leon: I would, yeah, any time. Gary: What is it about the older people here? Leon: They’re all’t same I think, it’s funny, funny, they don’t talk about owt that’s sensible. You can’t have a conversation with them. You can young’ uns. Gary: That’s why you said earlier about the fact that you like the staff? Leon: That’s right, they’re all young’ uns, staff, mostly anyway, very nice people. (Interview 18, man aged 85+ living in a residential home in an affluent area)

15. Personhood, body-practices and place Fay…I went [to see her], they told me not to go but I went the next day and when I went in …they hadn't fed her, they hadn't given her medication, they hadn't given her any drink, she had excretion in her pants that had been there 24 hours because it was the same pair of pants I'd put on her the day before. When I asked them about it I said: ‘Well, why haven't you given her anything to eat?' [They said] ‘Because she has her rights and she doesn't want to eat or drink' - and I said ‘She doesn't have rights like we do, she has dignity with care, it's not the same as giving her rights' and they wouldn't see it. She was totally traumatised by that situation and I fetched her out the next - well in fact it was that night so she was only in 24 hours. I fetched her out and that's why I decided never will she go in (Focus group 4)

16. Places of care and decisions about end of life care: vulnerability vs control Alan: You know, [we don’t always have] enough information … to make the decisions. Having said that I am in a cleft stick- I don‘t want that information…because I'm …I've been faced with a situation like that, you know, oh God I'm really ill here, will I survive until tomorrow? So I don't want anyone to give me that information. But the other side of me says hold on, you know, this is me, it belongs to me this body (Focus group 1)

17. Care decision-making at home Fay: If I hadn't have had the district nurses many a time - 'cos she kept having little strokes and - I mean that's another thing- it would be smashing if we had some kind of training because I didn't know what to look for initially and when she did have a stroke I panicked thinking what do I do? Do I phone 999? Or, as the doctor said in the end, just try and put an aspirin in her mouth and let her sleep through it because what will they do if they take her in hospital? But I didn't know what to look for and I panicked because I knew she wasn't right. Many a time I phoned this contact number for community sister and she would visit within a few minutes and although [mother] wasn't on their books she was brilliant. If it hadn't been for the community nurses I wouldn't have got through it. (Focus group 4)

18. Some conclusions • ‘Home’ as a place of care needs to be examined critically • Hospitals, hospices and care homes were valued as places of safety in which suffering could be contained, but risks of isolation and treatment as ‘just a body’ emerged. • Care of the dying person’s body is not a set of tasks but is bound up with feelings of value and personal identity. • Thinking about older adults’ and their carers needs for ‘control’ and ‘care’ can help to elucidate what styles of support are needed to improve the experience of dying in all care settings