Oral history in palliative care

Background

The Palliative Care Unit within the Northern General Hospital, Sheffield, has been creating oral history audio recordings with people in the unit since 2007, supported by the League of Friends, Sheffield Hospitals Charity 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’s 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

“At fifteen I was down the pit. You weren’t 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’ve been very lucky in my time, very very lucky apart from now… but yeah I went down the pit… 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.”

“My father was a labourer, my mother was there to look after the house, wash and feed us ... I’m the oldest of seven… In the 1940s, 1950s, there were no contraception as there is now and a lot of houses had big families… as a poor family we couldn’t afford anything… most of’t groceries was on’t tick. You had a tick book if you couldn’t afford it… If you hadn’t got it you went without. But where we were, house next to us … they had chickens at top of garden, and if they killed a chicken or a pig in’t abattoir and we knew somebody were roasting, we’d 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.”

“I’m 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’re humans like we are and they do have personalities, and you know it’s not this professional image that you get all the time. I think things are changing and people’s attitudes are changing too. The medical profession you know it’s 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.”

Tracy Green in an oral history interview

Impact of oral history in palliative care

To develop understanding of the role of oral history in palliative care and bereavement, in 2012 a Macmillan funded research study assessed the impact of creating an oral history. The research analysed the Sheffield archive of oral histories and sought views from interviewees, their family and friends and health care professionals. Recruitment for the study took place in Sheffield at the Macmillan Unit and St Luke’s Hospice. The study highlighted beneficial impact of oral history in palliative care.

Interviewees told us they enjoyed creating their oral history and found talking with an interviewer helpful and cathartic. Family and friends view the voice recording as an important outcome and health care professionals see benefits in oral history recording.

Key findings:

  • Oral history is an opportunity to reflect on life, from a personal perspective, without having to write
  • People with a life-threatening illness value being able to express their identity and talk about themselves with no time limit or medical agenda
  • Interviewees consider the oral history process validating, dignified and social
  • Family and friends told us that the most important aspect of oral history in palliative care is the creation of a voice recording as a lasting memory
  • Health care professionals appreciate oral history, they see it as a beneficial complement to clinical care

                                                    

Bill and Maggs by Karen Hitchlock

Feedback about oral history in palliative care

By interviewees

“I found it really satisfying… it's like having a bit of a clear out, you know like clearing out your cupboards. And I'm really glad that I’ve got all that down, that I have said all that and I’ve got it recorded and it's there now, it’s there forever.”

“Just 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’t happen does it?”

“I thoroughly enjoyed it… I was emotional at times, but I do get emotional. It wouldn’t put me off doing it again. No not at all…. I’ve got it for posterity and for my grandchildren.”

By family

“Having his voice on CD is the most precious thing I could have… It’s 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.”

“I don’t think many people actually record their own voices do they, no… I really enjoyed listening to it and I thought it was really interesting. I thought ‘I’m sure my children would like to listen to this as well.”

“It'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.”

By health care professionals

“A 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’ve done and not done, and experiences they’ve had. I think particularly it's valuable because they don’t just have half an hour… they have as much time as they need… it's really nice for them to just have time and space to talk at length.”

“As somebody’s health is deteriorating it's a time for reflection… what their experiences meant, what they’ve achieved... and that’s quite a therapeutic thing. If that’s been a part of their life, I think that’s quite healthy””

“One patient I met… her children were really excited that her grandchildren are going to hear her voice and have individualised messages for when they grow up.”

Photography

Karen Hitchlock works in partnership with people in the Sheffield Macmillan Unit for Palliative Care and their families to produce deeply personal images which complement oral history.


 

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) ‘Medical Ethics and Oral History’. 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 http://www.sciencedirect.com/science/article/pii/S1078817409001059

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’s 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’s 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 http://www.sciencedirect.com/science/article/pii/S0885392404004439


 

Links

Oral History Society
League of Friends

Sheffield Hospitals Charity
Macmillan Cancer Support
Sharing Stories and Saving Memories (Macmillan Cancer Support) 


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, Sheffield Teaching Hospitals NHS Trust and University Teacher in Adult Palliative and End of Life Care: m.winslow@sheffield.ac.uk

Sam Smith. Oral History Coordinator, Sheffield Teaching Hospitals NHS Trust: s.r.smith@sheffield.ac.uk


Sylvia by Karen Hitchlock