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Technology
Creates New Concerns for Dying Older Patients and Their Families
By Anna Hindes, EurekaAlert July 18, 2003
New technologies available in the management of dying now put older patients and their families in a shared dilemma with doctors, often without any proper understanding of the issues, according to new research funded by the ESRC as part of its Innovative Health Technologies Programme. 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 Copyright
© 2002 Global Action on Aging
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