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Dignity of frail older people and the risks in health and social services. Dr Win Tadd Cardiff University. Dignity & Older Europeans. 3 year cross-national comparative qualitative study , funded by the European Commission Fifth Framework Quality of Life Programme
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Dignity of frail older people and the risks in health and social services Dr Win Tadd Cardiff University
Dignity & Older Europeans • 3 year cross-national comparative qualitative study, funded by the European Commission Fifth Framework Quality of Life Programme • Partnership between nurses, philosophers, sociologists, psychologists, clinicians, health service researchers, NGO’s. • Involved 6 countries: the UK, France, Ireland, Spain, Slovakia, & Sweden.
Focus group participants • 89 focus groups involving 391older people • 85 focus groups involving 424 professionals • 89 focus groups involving 505 young and middle aged adults
Dignity in care in context • Ageism • Undervaluing & fear of old age • Old age as a subject of ridicule • Cultural context of old age • Society needs to embrace a broader notion of the dignity of old age
What older adults said • “They [care staff] 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.”
What older adults said • “There is another kind of not respecting dignity, that isn’t as severe, like laughing at someone when they’ve said the wrong word, because when we get older we might drift from one subject to another.” • “I’m thinking of a patient who was in a wheelchair and when we went to the city to buy new clothes the shop assistant addressed me, over her head!”
What older adults said • “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?’” • “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.”
What older adults said • “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.” • “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.”
What older adults said • “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.” • “They would bring round the food and place it at the bottom of the bed. Then someone else would come along and take it away untouched. If we hadn’t gone in there to feed my father he would have died of starvation. One of us went there every meal time.”
What older adults said • “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.” • “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.’”
Death with dignity • “ I remember when my husband died, he was a very proud man and they knew he was going to die that night. A nurse came in, 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?”
Dignity matters because… • When human dignity is lost or denied, people ‘give up’ and are more likely to become dependent requiring even more costly provision.
Valuing frail older people • “If you’re demented, you’re wasting people’s lives – your family’s lives – and you’re wasting the resources of the National Health Service”. • “ I think that’s the way the future will go, …you’d be licensing people to put others down. Actually I think why not, because the real person has gone already and all that’s left is just the body…”. (Warnock M. A duty to die? Life and Work. October 2008, 23-25.)
Focus on dignity • Violations of the dignity for frail older people can best be removed by focusing on dignity rather than emphasising autonomy and independence. • The focus on autonomy and independence can lead to the frailest and most vulnerable older people being viewed as minimal human beings and/or failures. • Ensuring dignity protects all interests and demands a greater moral force even when all autonomy is lost.
Conclusions • Focusing on dignity can restore the personal dignity of care-givers by recognising the inherent value of caring. • Respect for the human dignity of frail and/or severely demented older people satisfies their basic human rights, demonstrates our care and concern as a society and enhances our own dignity.
Finally… “Whether by stroke, by Alzheimer’s, by poverty or by whatever cause, we stand at risk of losing everything achieved over a lifetime. Each of us, however, dimly, carries this unspoken awareness during our lives. Life can end badly: fear of aging is still rooted in this grim understanding. Dignity in old age matters because every one of us carries this sense of vulnerability and because we fear becoming less than ourselves in the last stage of life.” (Moody, 1998)
