Memories, trajectories and bereavement
Penny Mills (penny.mills@warwick.ac.uk) Professor Frances Griffiths Dr Dan Munday
Introduction
Much attention has been given in recent years to the concept of illness trajectories and their
potential use in the planning of services provided to those with life limiting illnesses. This study
examines how trajectories are experienced by bereaved individuals and whether the memories
retained by the bereaved or their experience of grief differ according to the disease trajectory of
the deceased.
“We knew there was never going to be a positive ending to it...pretty much
from the beginning....We’d sort of chased a few hopes” David.
Background
Rapid demographic change over the past 150 years; we now
tend to live longer and die more slowly from chronic disease.
Methods
Increasing difficulty in predicting death and the dying phase.
 One to one unstructured in depth interviews conducted with
bereaved relatives and staff members between three months and
two years after the death.
Grief now seen not as a series of stages to be worked through
but as a ‘state of being’. (Field 2003)
 Thematic analysis of the narratives produced.
Emphasis on ‘continuing bonds’ between the deceased and
the bereaved. (Valentine 2008)
 Mapping of trajectories of dying from relatives and health
professionals perspectives.
Changing memorial practices, ‘from cathedral to supermarket’,
‘from words to silence’. (Walter, 1996, 2001)
Evolution of palliative care and desire to expand it’s ethos and
practice beyond those with cancer diagnosis. (DoH,2008)
“I don’t think she talked. We couldn’t
talk, but we held hands all
through the night. I think we slept on
and off...and we didn’t say a word.”
Peter.
Preliminary Results
Trajectories: Lack of uniformity or 'fit’ of trajectories. Some marked differences between accounts given
by staff and relatives. Importance of ‘normality maintenance’ in the face of trajectories. Key events
recounted by relatives are not necessarily related to medical status of deceased. Fluidity of awareness
of dying.
Memories: Importance of planned and spontaneous memory making activities and forward acts of
remembrance. Shared and communal memories as a source of support and comfort. Shaping and
justifying of memories in order to achieve continuity and fit between the dying trajectory and prior
biography of the deceased.
Bereavement: Need to achieve a ‘good’ or ‘appropriate’ death as defined by the deceased - sacrifices
made by the bereaved in order to achieve this. Importance of Health Care Professionals in recognising
trajectories, legitimising and enabling access to services. The continued presence of the deceased.
Discussion
Accounts illustrate a wide variety of remembered experience and some
marked differences between ‘official’ and remembered trajectories.
The ‘good death’ is assessed in relation to the wishes and habits of the
deceased rather than any external concept or scheme. This leads in some
cases to a disparity of need between deceased and carer as efforts are made
to enable the deceased to remain in control of all aspects of their lives and to
approach their illness as they choose.
The input of Health Care Professionals is welcomed and viewed as vital by the
bereaved as providing information, access and endorsement of choices.
“I said ‘well look, what’s going to happen? I’ve got this wall in
front of me and I can’t see beyond it., can you tell me what to
expect?’
And she did. She went through all the rigmarole of.....It was
such an enlightening conversation, that I was ready.” Peter.
References
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