Dignity Matters A focus on the treatment of

Dignity Matters: A focus on the treatment of older people Dr Win Tadd Department of Geriatric Medicine, Wales College of Medicine Cardiff University, U. K. January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 1

Dignity & Older Europeans n 3 year, cross-national comparative qualitative study, funded by the European Commission Fifth Framework Quality of Life Programme n Partnership between nurses, philosophers, sociologists, psychologists, clinicians, health service researchers, and NGO’s. January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 2

Project Outline n Phase 1: Review & analysis of literature, development of a theoretical model of dignity and a bibliographic database n Phase 2: Qualitative analysis of focus group data (265/1320 participants from 6 countries) to uncover older peoples’, professionals’ and younger peoples’ views of dignity n Phase 3: Modify model and develop inter-professional educational materials & policy/service recommendations www. cf. ac. uk/dignity January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 3

Older people’s Focus Groups n 89 focus groups 391 participants Ø 227 aged 60 -79 years, 164 aged 80+ yrs Ø 283 women, 108 males Ø 212 widowed/divorced, 114 married Ø 108 basic education, 50 graduates Ø 66 living in residential/nursing homes Ø 214 receiving some form of community care January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 4

Professionals’ Focus Groups n 424 professionals in 85 focus groups. Ø 55 (13%) were male and 369 (87%) were female. Ø Mean age 41 years (18 -77) Ø Mean length of time since qualification 14. 4 years (3 weeks-46 years) Ø Nursing 45%, Physicians 9. 6%, Care workers 9. 4% Social workers 6%, Senior/Managerial 6% Physiotherapists 5%, Others 18% Ø Hospitals 34%, Nursing Homes 33% Community Care, Health care centres, Clinics, Day centres, Helping services Ø Mean percentage of working time spent with people aged over 65 = 79. 6% (0 -100%) January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 5

Young & Middle aged adults Focus Groups n 89 focus groups involving 505 participants Ø Young adults 13 -39 years: (328) Ø Middle aged adults: 40 -60 years: (177) Ø Gender: female 328; male 177 Ø Education: 161 degree; 76 certificate/diploma; 227 high school; 41 basic schooling Ø Occupation: 227 Full time education; 237 Employed; 41 Unemployed/retired/home makers Ø Experience of caring for older people: 96 currently; 222 previously; 187 none. Ø Residence: 308 city; 126 town; 71 rural January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 6

Access to treatment “ My doctor’s locum is very disrespectful and I won’t see him. He’s cheeky. I just won’t see him. I went to him, with some complaint or other and he said ‘Well what do you expect at your age? ’ And then further on in the conversation he said ‘Well, you know, it’s your age’ and the third time he said it I said ‘Stop talking about my age’…” January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 7

Access to care “Over the last 10 years or so finances for older people has been very sadly lacking… My neighbour had a care package and was desperate to use her commode at lunchtime as she did not want to be incontinent. But you needed two staff to put her on the commode and they couldn’t be sent in then because the money wasn't available. She was the one who suffered as the staff just came later and changed her. ” January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 8

Access to treatment “My own mother, a fit 72 year old, travelling up and down the country visiting family everywhere, had a sudden stroke, was taken into hospital but wasn’t treated because they said they couldn't do anything until she'd had a scan. She couldn't have a scan because there was a waiting list and she wasn't a priority. ” “Why wasn't she a priority? ” “Because she was old. The old aren’t given the same value as the young. It's not that people are nasty or that people don't care. It's because the system is ageist. My mother had the scan a week later on the Wednesday morning but she died on the Wednesday night. ” January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 9

The experience of ageism “Now you have what they call ‘bed-blocking’ What a terrible word that is. But I mean these poor old people they are called 'bed blockers' through no fault of their own. It’s disrespectful as if they are objects. ” January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 10

Disrespectful images of older people Bed-block patients cost £ 359, 000 January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 11

The impact on older people “Once you are past 60 you are a burden, and I am sure that is what they were saying, you are a burden on them. ” “You get quite anonymous I think, you get grey hair and become anonymous and invisible. You don’t matter and are overlooked. ” January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 12

Dignity enhancing care January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 13

Dignity enhancing care Promoted autonomy and individuality n Engendered respect n Involved effective communication n Encouraged involvement and participation n Ensured privacy n Empowered rather than humiliated n Maintained personal identity n January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 14

Respect and individuality “When you feel that they treat you with loving care, affection, attention, gentleness, it makes you feel good. It makes you feel like a human being. ” “The nursing staff up here work very, very hard. They do. They always find time to talk to me and treat me with dignity. It didn’t matter whether they were just passing, you were acknowledged and you were treated like the person you are. January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 15

Meaningful communication [About a meeting with a nurse] “To allow a person plenty of time, to put things in order for us, with medicine and how we are feeling and everything. It was terrific, an example of really dignified behaviour. ” “And they touch them. Physical contact is very important. That person becomes closer through physical contact. A bond is established. ” January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 16

Empowerment and participation “Those are the situations in which you see that professionals adapt to your personal situation, to your circumstances, beyond bureaucratic procedures and competencies. That’s when you feel that they are treating you with dignity, like a person with needs, whose questions are being answered. ” January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 17

Privacy “Well if they wanted to talk to you about anything, or if you were upset, they talked to you privately and quietly and they would draw the curtains. The doctors always drew the curtains and if they wanted to look at your wound, they didn't just sort of throw the covers off you. . They said ‘Do you mind, can I have a look‘? or if they brought someone different they would say, ‘Do you think Dr whoever could have a look? ’ and they would introduce them. They didn't sort of barge in and take it for granted that you wouldn't mind what they were doing. ” January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 18

A sense of identity “They never make me feel just like another old woman. They remember who I am, a mother, a grandmother, that I bring another life with me. ” January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 19

Undignified Care January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 20

Undignified Care - Intrusive assessments “But to have somebody facing you in your own home, sometimes twice a week at 8 o'clock in the morning. Watching you wash, dress, go to the toilet! I said to her, ‘Do you have to keep coming here? ' and she said 'I have got to see what you can do' My answer that I could tell her what I can do, was no use as she just insisted that she had to see me. It was so humiliating, it was horrible, horrible. Talk about loss of dignity. It upset me, it really upset me. ” January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 21

Undignified Care - Poor communication “He was well a sort of dignified man, marvellous mind and he had to go into hospital towards the end of his life and he did tell me when I went in to see him once, and he told me that he couldn't stand this business of ’Come on love', or them calling ‘George’. That just wasn't his language, he was a very dignified man. ” January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 22

Undignified Care -Poor Communication “Why don't patients complain? First of all they don't want to be thought stuffy. But also they, recognise their vulnerability, and will bend over backwards not to offend the people in whose hands they find themselves. You may think title is a minor expression of dignity, but it is perhaps one of the few things left to people struggling to maintain their dignity. ” January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 23

Undignified Care -Poor Communication “I went into this particular specialist and instead of talking to me, he was writing all the time. I could have been an elephant! He said to the nurse ‘Take her in there and tell her to strip down’ and I just said, ‘Am I invisible? ’” January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 24

Undignified Care -Poor Communication “The nurse and doctor just chatted together while he put in the drip - it was awful. They just moved him as though he was an object. Not one word, not a smile - nothing. ” January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 25

Undignified Care -Use of the toilet “I’ve seen caregivers who didn’t treat certain people in a dignified manner. Once one came in with a list to check who had to go to the toilet. People don’t go to the toilet by list. They have to go when they need to. Someone asked the nurse to take them. She looked at the list and said, ‘It’s not your turn. ’ How do you like that? Does that person have dignity or not? That’s not treating someone with dignity. ” January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 26

Undignified Care -Use of the toilet “And you see again at night, they're short staffed and she was told, ‘Wet the bed, it's easier to change the bed than get the hoist. ’” January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 27

Undignified Care -Use of the toilet “I went to visit my husband on the first day and he is a very private person, and doesn't like being embarrassed. He was almost in tears and said ’Please, please go and get a bottle I am nearly wetting myself’. I rushed out and got a bottle and asked him why he didn't just ring the nurse. 'I have for an hour and a half I've been asking for a bottle. ' When I told the nurse she said, ’Oh don't worry we would have changed the sheets. ' Now his dignity at that stage would have gone out of the window. There was no dignity. ” January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 28

Undignified Care -Use of the toilet “It offended me when I was given a bed pan by a young man. It was very embarrassing. ” January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 29

Undignified Care -Use of the toilet “I felt very embarrassed on the hoist and I used to say ’Can I cover myself up' and they just pulled your night-dress down over your knees, but the back view was wide open to anybody. Also it was often the male nurse who would help you and I was so embarrassed about that. ” January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 30

Undignified Care - Lack of privacy “You can hear everything that is going on behind the curtains. The staff shout as if you are deaf or stupid, saying things like 'I am going to stand you up now and do your bottom' as if they have to explain everything, and that means that people right next door can all hear. Or when they come round asking 'Have you opened your bowels today’. There’s not much dignity then. ” January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 31

Undignified Care - Lack of privacy “You know when people are getting washed or using the toilet and people keep popping in and out of the curtains, saying ’Can I just ask you about such and such'. . It makes you feel awful. But then people just forget I think. ” January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 32

Undignified Care - Rough handling “I spend my nights crying. If you saw my arms the bruises. Three nights ago. . . They put me on the commode and my arms hurt and they do everything to me. . . ‘Turn around, ’ [Order given in an impatient tone], like an animal. You can’t turn around, you can hardly move. ” January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 33

Undignified Care - Hiding medications in food “They mashed her tablets up in part of her dinner like they do to the dog you know I mean that. That's not on is it? It's just not on. That's the most undignified thing I've ever seen. ” January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 34

Undignified Care - Denying autonomy “They would not do any deliberate harm to her but they did a lot of negative harm in the way in which they treated her because she was still able to make certain kinds of decisions for herself. But somehow even these were taken away from her. “ January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 35

Undignified care at the end of life “ I remember when my husband died, right at the end, he was a very proud man and was very ill. They knew he was going to die that night. A nurse came and she was a real hard sort of nurse and my friend said, ’Can we wash him and put him into his clean pyjamas? ’. She said ‘Oh don't put him in clean pyjamas, he is not going to be here much longer'. I said to the nurse ’It’s his dignity, I want him washed and changed’. That's dying with dignity isn't it? ” January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 36

Undignified Care: Lack of human & physical resources “Here I see, as far as dignity’s concerned, that there’s a lack of staff to care for the needs that exist. ” “ I don't know. They do their best but they are short of the most basic equipment such as beds and commodes, there is little privacy. How can you be treated with dignity lying in a hospital corridor? January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 37

What have we done? Produced a range of educational materials, leaflets, & poster www. cf. ac. uk/dignity n Together with a multi-agency committee Produced the ‘Behind Closed Doors’ materials and campaign www. bgs. org. uk/campaigns/dignity. htm n January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 38

Other resources n www. scie. org. uk/publications/practiceguid e 09 January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 39

Dignity is important because… n Positive health and social outcomes result when people : n (i) feel valued and respected (Ranzjin R et. al. 1998, SCIE, 2006) n (ii) are involved in care decisions; (Brillhart B, Johnson K. 1997, SCIE 2006) and n (iii) are able to exercise direction over their lives (Bensink GW et al. 1992 (SCIE, 2006) n When human dignity is lost or denied, people ‘give up’ and are more likely to become dependent requiring even more costly provision. January 22 nd 2007 National Service Framework for Older People Marriott Hotel Cardiff 40