Oral history in palliative care
The Palliative Care Unit within the Northern General Hospital, 葫芦影业, has been creating oral history audio recordings with people in the unit since 2007. It has received generous support from 葫芦影业 Hospitals Charity, The League of Friends, 葫芦影业 Town Trust, Blundells Estate Agents and Macmillan Cancer Support.
Oral history is the recording of unique life experience. It captures voices and memories and people are involved in the process of producing their own life histories. Oral history complements palliative care services by offering time to reflect, record identity and make a family record in the teller鈥檚 voice. Participants receive an audio CD soon after their interview and recordings are securely archived. With consent, interviews are available for research. Interviews are carried out by volunteer oral history interviewers who are trained and supported in the practical, emotional and ethical complexities of the work.
Oral history excerpts:
鈥淎t fifteen I was down the pit. You weren鈥檛 down full time, we used to spend, I don't know if there was one or two days a week something like that with the National Coal Board, when you were training. I got an apprenticeship with a Coal Board, great apprenticeship training to be an electrician but the reason that I went down the pit was so I could go in the Miners Welfare club, so that's why I went down the pit, really, if truth be known. I鈥檝e been very lucky in my time, very very lucky apart from now鈥 but yeah I went down the pit鈥 it was scary and damned hard work. I mean my father was a miner, Dad was what they call a tailgate rip which was arguably the, in my eyes anyway, in the top three or four hardest jobs in a mine. Oh man that was some job, some physical job.鈥
鈥淢y father was a labourer, my mother was there to look after the house, wash and feed us ... I鈥檓 the oldest of seven鈥 In the 1940s, 1950s, there were no contraception as there is now and a lot of houses had big families鈥 as a poor family we couldn鈥檛 afford anything鈥 most of鈥檛 groceries was on鈥檛 tick. You had a tick book if you couldn鈥檛 afford it鈥 If you hadn鈥檛 got it you went without. But where we were, house next to us 鈥 they had chickens at top of garden, and if they killed a chicken or a pig in鈥檛 abattoir and we knew somebody were roasting, we鈥檇 take bread next door and ask if we could dip it in their fat. Put a bit of salt on and you had a dripping sandwich. I still eat pork dripping with jelly in it... Even today I eat jelly on my toast and it flavours it up lovely.鈥
鈥淚鈥檓 a happy go lucky kind of person and if I can have a laugh I will, have a laugh at the doctors you know, because they鈥檙e humans like we are and they do have personalities, and you know it鈥檚 not this professional image that you get all the time. I think things are changing and people鈥檚 attitudes are changing too. The medical profession you know it鈥檚 not that stuffed shirt kind of attitude like it used to be, where you went into the doctors and it was like you were going to see your bank manager or something.鈥
Feedback about oral history in palliative care:
By interviewees
鈥淚 found it really satisfying鈥 it's like having a bit of a clear out, you know like clearing out your cupboards. And I'm really glad that I鈥檝e got all that down, that I have said all that and I鈥檝e got it recorded and it's there now, it鈥檚 there forever.鈥
鈥淛ust the fact that somebody is listening to you for an hour, about you, how unusual is that? How many people get that chance to talk about yourself, it doesn鈥檛 happen does it?鈥
鈥淚 thoroughly enjoyed it鈥 I was emotional at times, but I do get emotional. It wouldn鈥檛 put me off doing it again. No not at all鈥. I鈥檝e got it for posterity and for my grandchildren.鈥
By family
鈥淗aving his voice on CD is the most precious thing I could have鈥 It鈥檚 so next to the person being there, you know it's so moving... it's very, very precious. They say what you would grab if you had to run out of the house it would probably be that.鈥
鈥淚 don鈥檛 think many people actually record their own voices do they, no鈥 I really enjoyed listening to it and I thought it was really interesting. I thought 鈥業鈥檓 sure my children would like to listen to this as well.鈥
鈥淚t's really touching, it gives the person a sense of power, empowerment, and self-worth. They can be heard, not forgotten you know, as human beings.鈥
By health care professionals
鈥淎 lot of patients like to be able to share their life stories and get a lot of value out of thinking about what's happened during their life, recalling some of the things they鈥檝e done and not done, and experiences they鈥檝e had. I think particularly it's valuable because they don鈥檛 just have half an hour鈥 they have as much time as they need鈥 it's really nice for them to just have time and space to talk at length.鈥
鈥淎s somebody鈥檚 health is deteriorating it's a time for reflection鈥 what their experiences meant, what they鈥檝e achieved... and that鈥檚 quite a therapeutic thing. If that鈥檚 been a part of their life, I think that鈥檚 quite healthy鈥濃
鈥淥ne patient I met鈥 her children were really excited that her grandchildren are going to hear her voice and have individualised messages for when they grow up.鈥
Publications
Noble B, Winslow M (2015) Development of palliative medicine in the United Kingdom and Ireland. Bruera E, Higginson I, von Gunten C, Morita T (ed.) Textbook of Palliative Medicine and Supportive Care. Boca Raton, FL: Taylor Francis Group
Winslow M, Meldrum M (2013) A History of Hospice and Palliative Medicine. Lutz S, Chow E, Hoskin P (ed.) Radiation Oncology in Palliative Cancer. Chichester: John Wiley and Sons
Winslow M, Smith G (2010) 鈥楳edical Ethics and Oral History鈥. D Ritchie (ed.) Oxford Handbook of Oral History. Oxford: Oxford University Press
Ferris C, Winslow M (2009) Oral History in Radiography: Listening to pioneers. Radiography(2009) 15, e62 - e66
Winslow M, Hitchlock K, Noble B (2009) Recording Lives: The benefits of an oral history service. European Journal of Palliative Care 16, 3: 128-130
Winslow M, Clark D (2006) St Joseph鈥檚 Hospice, Hackney: A century of caring in the East End of London, Progress in Palliative Care 14, 2: 68-74
Winslow M, Clark D (2005), St Joseph鈥檚 Hospice, Hackney: A century of caring in the East End of London. Lancaster: Observatory Publications
Clark D, Small N, Wright M, Winslow M, N Hughes (2005) A Bit of Heaven for the Few? An oral history of the modern hospice movement in the United Kingdom, Lancaster: Observatory Publications
Winslow M, Seymour J, Clark D (2005) Stories of cancer pain: a historical perspective. Journal of Pain and Symptom Management 29, 1: 22-31
Links
Contact us
If you are interested in finding out more about oral history in palliative care please send us an email:
Dr Michelle Winslow - Oral History Lead, 葫芦影业 Teaching Hospitals NHS Trust and University Teacher in Adult Palliative and End of Life Care
E: m.winslow@sheffield.ac.uk
T: (0114) 222 2077
Sam Smith - Oral History Coordinator, 葫芦影业 Teaching Hospitals NHS Trust
E: s.r.smith@sheffield.ac.uk