Anne Dempsey talks to consultant Sinead Donnelly about the research she conducts into palliative care
Collating qualitative research could sound like a dry business but not in the hands of Dr Sinead Donnelly, a consultant in palliative medicine at Limerick Milford Care Centre hospice, who also makes documentaries around dying as a way to reach and stretch her professional peers.
A research day for physicians on palliative care which she has organised takes place in Limerick on Thursday. Presentations include an inquiry into the moment of death at home and patients' views of palliative care.
It was her quest to learn more about dying that led her into talking to families and filming her findings.
"My purpose is to prepare people for the time of dying but very often I'm not there. I don't know what happens at the moment of death. We need to find out more for our learning, for our own training purposes," she says.
"It is the experience of family stories that for me is the best way of presenting the inside track of the world of palliative care and how innovative we can be.
"I want to allow people tell their stories with their own life and vigour. My aim is to touch and move my audience so that they think about death because I believe that's when learning happens."
She trained in palliative care in Our Lady's Hospice, Harold's Cross, Dublin and has worked in Britain and the United States. In Glasgow she began to explore traditions around death and dying in western Scotland and later in the west of Ireland. She discovered that many families instinctively adopted a palliative care philosophy, such as staying with someone who is dying, knowing how to feel the pulse, keeping the mouth moist, reading the breathing.
"My question is that while we have made great strides in palliative care, could we be disempowering people also? For instance, we set a great store these days by mouth care, but we found people were doing it anyway, tickling the mouth with a feather to open it, and moistening with alcohol."
She returned to Ireland in 2000 and continued her research at Milford.
"We interviewed relatives within two weeks of the death of the relative. Many recognised very clearly the moment of death and saw it as mysterious, sacred.
"Again, what came through was the importance of being present, of bringing their own sense of ritual and faith, which we facilitated in the unit. There was also a great scattering of humour even at the time of death. Families spoke too of their appreciation of doctors and carers, of the respect with which the person dying was treated, being addressed by name even when unconscious."
She has made three documentaries on the theme of caring, illness and dying. The first, Anam: a story of cultural soul, a bilingual film screened by Telefís na Gaeilge, asked a number of palliative care professionals what was the most important aspect of the care they provided.
"One doctor said she no longer says to people 'I know how you feel' because she realises it's not true." In the second, Give Me Your Hands, Donnelly, with cameraman Matt Kelly, interviews three families in crisis, looking at how members, neighbours and community come together.
This documentary has been turned into a teaching pack for professional and voluntary groups, with video, facilitator notes and 12 photograph stills as discussion triggers.
The third film features 14 young people aged 10-16 who have experienced the death of someone close. Donnelly says A Child's Grief illustrates how children can deal with grief authentically and well.
Conducting and interpreting qualitative research - a workshop for physicians takes place at the Milford Care Centre, Limerick on Thursdayand is organised by the Irish Hospice Foundation, the Palliative Medicine Department, Limerick and the Irish College of General Practitioners.