Oral history interviews with patients who are nearing the end of life can play an important role in preserving dignity and enhancing feelings of self-worth
Citation: Winslow M (2015) Taking oral histories to improve end-of-life care. Nursing Times; 111: 15, 21.
Authors: Michelle Winslow is Macmillan oral history lead at School of Nursing and Midwifery at the University of Sheffield. She was assisted by Sam Smith, research associate at University of Sheffield, who coordinates the daily running of the service in Sheffield.
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”It’s like having a bit of a clear out… like clearing out your cupboards. And I’m really glad that I’ve got all that down… and it’s there forever.”
These are the words of one of the many patients who, since 2007, have undertaken life history interviews at the Sheffield Macmillan Unit for Palliative Care. In the unit, end-of-life patients and people in supportive care are offered the opportunity to conduct an oral history interview in a session with a volunteer oral historian. The volunteer records the patient’s life story and copies it to a CD for the patient and family (with the patient’s permission). Anyone can request an interview by asking any of the staff in the unit.
Nurses have long striven to maintain the dignity of patients at the end of life. In 2012, Macmillan Cancer Support funded qualitative research with interviewees, health professionals and family members, which showed the part oral history interviews can play in preserving dignity and enhancing feelings of self-worth.
What is an oral history interview?
The oral history interview allows patients the time and space to express their identity, and to talk about themselves with no medical or clinical matters. Interviewers do not ask about a patient’s diagnosis and we try to carry out the interview without thinking of them as patients.
According to our research, interviewees found the oral history process validating, dignified, satisfying and social. Staff were keen to refer patients to us as they thought the process was therapeutic, with end-of-life patients regaining a sense of control and autonomy.
In our research, family members talked about the value of having a recording of their relative’s voice, with one person saying that the CD would be the one thing she would grab if she had to flee the house. Another bereaved woman said she listened to the CD when she realised she had forgotten the sound of her husband’s voice.
Developing the service
The idea for the service came about in 2003 when, after working as a nurse and doing a history degree and a PhD in oral history, I interviewed patients for research while working with the Hospice History Project at the University of Sheffield. The aim was to add their voices to this record of the growth of the hospice movement. One person I interviewed had motor neurone disease and his wife was so pleased with the interview she said the opportunity to record a life history should be a service for end-of-life patients.
It was a light-bulb moment and, after a long quest for funding, the service was finally set up with the support of Sheffield Hospitals Charity. A few years later in 2012, Macmillan Cancer Support provided pilot funding to enable the oral history service to spread to five other sites in Manchester, Leeds, Nottingham, Winsford and Antrim.
Nurses who listened to interview clips began to see the value of an oral history service. One of the nurses was fascinated to listen to an interview with a patient who was a well-known DJ on the 1980s Sheffield music scene. She realised that she knew him and it brought another dimension to the nurse-patient relationship.
The oral history team has worked hard to gain the trust of staff, who were initially worried that the interviews could potentially harm patients in some way. However this has not been a problem. Our volunteer interviewers are well trained, supported and supervised and would inform nurses if they were concerned that someone was upset after thinking about their life.
We are also building an archive of interviews, which gives a fascinating glimpse into local and family history.
The oral histories tell us about the person behind the patient and about personal, non-medical issues that are important to them. More than anything, the archive is invaluable for any family whose relatives have their voices in it, and the recordings will be secure for decades to come.