Learning more about the needs of older people at the end of life

This year’s Annual Marie Curie Research Conference, held jointly with the Royal Society of Medicine, will focus on palliative care in the community – making a difference in practice.

Jo HockleyJo Hockley, Nurse Consultant at St Christopher’s, will be discussing her research at the conference. Here Jo gives a quick overview about why her work is crucial in bringing benefits to patients at the end of the lives as well as to families and carers.

What is the research that underpins your presentation and how long did it take?

My PhD thesis was about developing quality end of life care in the NHS using action research as a methodology (an unusual methodology for health). It took five years to complete (2001-2006).

Why did we need to investigate this area?

At the time we knew very little about how frail older people in nursing homes were dying, despite a large proportion of the population over the age of 85 being cared for in care homes – with nearly 20% dying in care homes.

Who did we talk to (and how many people) and what did we ask them?

The study was partly an exploratory study but staff in the care homes were also encouraged to come up with actions to bring about change. During the exploratory period I undertook:

  • 22 individual interviews,

  • five focus groups,

  • worked alongside carers two days a week for three months in each nursing home looking after the frailest residents

  • examined various documents

Because the research was being done part-time I was able to spend three years in the field, two of which involved implementing the main actions:

  1. Reflective debriefing sessions following a death

  2. Integrated Care Plan for the last days of life

How will the findings help people with a terminal illness or their families?

Following this piece of research, I moved to London and had the opportunity to try it out further in practice. We methodically worked with 71 nursing homes over a five-year period and have managed to increase the number of people dying in the nursing homes (as opposed to hospital) by 21%. Many frail older people know that they are at the end of their lives; however, care staff have felt in the past that dying was not a good outcome of care even for the oldest people. Our project has helped staff gain in confidence and to be able to speak more openly about end of life care with residents and families, many of whom are very grateful.

What more do we still need to learn about this topic?

What we still don’t know however is the quality of care in the last month of life for these residents.  We have been awarded funding from the Burdett Nursing Trust to introduce the Family Perception of Care into 45 of our nursing homes. We are using this not only as an audit, but also as a way of training reflecting on issues that are brought up by families.

The conference will take place on 28 March 2014 in London and will be attended by Marie Curie staff, healthcare professionals, academics and others with an interest in palliative care research. Visit the Marie Curie website for more information and to view the programme. For conference updates on twitter follow the hashtag #communitypallcare.