The culture of 'doctor knows best' has given way to a situation in which people may be faced with making important decisions at a time when they feel very vulnerable, says a study led by Dr Jane Seymour of Sheffield University. Dr Seymour said: "Although death these days occurs most commonly at the end of a long life, until now we have known very little about what older people consider is important in achieving a dignified death - a basic human right for all."
With colleagues in the Sheffield Palliative Care Studies Group, she has spent two years researching older adults' views about the use of new medical technologies during care and treatment. The study involved 77 older people living in Sheffield, ranging in age from 60 to over 85. Researchers used pictures, stories and media reports to help participants discuss issues associated with, for instance, technologies used to provide comfort, including pain relief, and those to prolong life, such as resuscitation and artificial feeding. They found people felt they had a poor understanding of the clinical, ethical and legal framework within which the life prolonging technologies were used.
Trust and good communication, and the ability to weigh up with medical experts the risks and benefits were seen as essential to good quality end-of-life care. Contrary to present guidelines and law, many called for a family 'veto' so that when an old person was dying, relatives would be able to give consent on their behalf.
Home was seen, ideally, as the preferred place to be cared for because of the presence of loved ones, independence, familiarity and memories. However, this also produced a range of problems, including fear of dying alone, worries about being a burden, and concerns about the skills of family carers.
Comfort and love were the terms used to describe good care during dying, ideally along with pain relief and sedation used carefully to provide an easy, comfortable and quiet death.
The study researched the use of statements setting out in advance people's wishes. Many wanted to know more about the risks and benefits of these 'living wills', and raised concerns about the perceived link with euthanasia. They did not feel that they would be ready necessarily to adhere to an advance statement when the time came.
The study concludes that advance care planning would be better understood as a process of discussion and review between clinicians, patients and families, rather than by completing an advance statement. Dr Seymour said: "People in our study recognised that families now have to be ready to play a role in making decisions about care and treatment for their dying relative. However, more information was required, in particular, about what doctors are allowed to do when providing pain relief and symptom control to patients, and when removing life-prolonging treatments.
"Developing a programme of public education was identified as an issue which should be addressed urgently if older people and their family carers are to be better equipped to make informed choices."
For further information, contact:
Dr. Jane Seymour on 0114-262-0174 x27 (work) or 0114-232-2237 (home – after 6.15pm), or e-mail: j.e.seymour@sheffield.ac.uk
Or Lesley Lilley or Anna Hinds at ESRC, on 01793-413032/413119
NOTES FOR EDITORS
1. The research report 'Technology and Natural Death: A study of older people' was funded by the Economic and Social Research Council (ESRC). Dr. Seymour is in the Sheffield Palliative Studies Group at the University of Sheffield, SHEFFIELD S11 9NE. The project is part of the ESRC's Innovative Health Technologies Progamme (website:http://www.shef.ac.uk/uni/projects/gop/index.htm)
2. The ESRC is the UK's largest funding agency for research and postgraduate training relating to social and economic issues. It provides independent, high-quality, relevant research to business, the public sector and Government. The ESRC invests more than £76 million every year in social science and at any time is supporting some 2,000 researchers in academic institutions and research policy institutes. It also funds postgraduate training within the social sciences to nurture the researchers of tomorrow. More at http://www.esrc.ac.uk
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