Intended for healthcare professionals

Rapid response to:

Analysis

Getting services right for those sick enough to die

BMJ 2007; 334 doi: https://doi.org/10.1136/bmj.39127.653704.80 (Published 08 March 2007) Cite this as: BMJ 2007;334:511

Rapid Response:

Being sick enough to die: the need for evidence

Dear Editor,

Sydney Dy and Joanne Lynn are to be congratulated for helpful
analysis piece and the perceptive title, "Getting services right for those
sick enough to die". Their analysis has echoes of a 1982 BMJ editorial by
Bayliss entitled, “Thou shalt not strive officiously” (1) which, focussed
on resuscitation but captures much of the present challenges.

Perhaps the biggest challenge in using trajectories is diagnosing the
transition between living with a chronic condition and the onset of dying
from that condition. In various forms of cancer the transition has become
much more openly acknowledged and the introduction and value of good
palliative care beyond doubt. However, the trajectory of
neurodegenerative diseases such as dementia in the aged are not well
described, accordingly transitions are missed or perhaps not capable of
robust diagnosis in routine practice.

The health needs of the very old are a relatively new phenomenon and
whilst there may be some advance in debate and understanding over the
value of interventions such as the resuscitation of older people in care
homes (2) there is much ignorance, misunderstanding and occasional
unrealistic expectation regarding the appropriate level of support,
intervention and its impact on the very old with conditions such as
dementia.

Feeding, nutrition, feeding and dementia offer an example of the
complex interplay of factors. In early disease with increased activity
people with dementia may need an increased diet to maintain wellbeing
whereas in more advanced disease, less activity, increasing frailty and
weight loss may be expected. In his elegant prose, Alan Bennett provided
personal observations from visiting his mother in a care home.

“The turnover of residents is quite rapid since whoever is quartered
in this room is generally in the later stages of dementia. But that is not
what they die of. None of these lost women can feed herself and to feed
them properly, to spoon in sufficient mince and mashed carrot topped off
with rhubarb and custard to keep them going, demands the personal
attention of a helper, in effect one helper per person. Lacking such one-
to-one care, these helpless creatures slowly and quite respectably starve
to death.” (3)

It is not clear is whether Bennett had considered that the
“respectable death” may have been deferred by more aggressive feeding and
whether that would have been appropriate or a chosen course for the
individual.

The BMJ previously published a well considered analysis by John
Hoffer on “Tube Feeding in advanced dementia” 4) In the responses to that
article Dr Ansell,
a Senior lecturer at the Department of Health Sciences, University of York
wrote 5),

“Significant weight loss marked the beginning of the end of their
lives for each of my long-lived parents and parents-in-law (three of whom
had dementia), but once we were able to accept this and stopped trying to
'feed them up' food ceased to be such a worry. They each developed
idiosyncratic tastes and my late father happily ate a doughnut a day but
almost nothing else for several years. My mother, now in her 90th year,
eats only toast, spicy rice dishes and jelly babies. To her relief we have
finally stopped trying to persuade her to vary her diet and my brother and
I now cook and freeze small quantities of what she likes to eat. With this
bespoke meals service my very frail mother continues to live alone in her
own home and appears to be meeting her nutritional needs.”

The apparent disparity of perspective between the accounts of Bennett
and Ansell illustrates the present difficulty of doctors and other health
professionals providing good clinical opinion. This dilemma needs a
similar intelligent consideration as the debate regarding resuscitation.
This is problematic because opinion over eating, food and nutrition is
subject to so much diverse opinion that what evidence and informed choice
may exist often seems overrun by fashion and prejudice. At the very least
cachexia related to non-malignant disease needs wider understanding and
more generally research is urgently needed to provide evidence base to
support clinical decision making whether patients are sick enough to die.
It is not sufficient to ensure that the services are right for those sick
enough to die.

Yours sincerely,

Clive Bowman

Helga Goutcher

References

1) Bayliss RI Though shalt not strive officiously BMJ 1982 Vol 285
No 6352 P 1373-1375

2) Simon P Conroy, Tony Luxton, Robert Dingwall, Rowan H Harwood,
John R F Gladman, Cardiopulmonary resuscitation in continuing care
settings: time for a rethink? BMJ 2006;332:479-482 (25 February),
doi:10.1136/bmj.332.7539.479

3) Alan Bennett The candlewick way of death
Untold Stories 2005 Faber and Faber ISBN-10: 0571228313

4) L John Hoffer Tube feeding in advanced dementia: the metabolic
perspective
BMJ 2006; 333: 1214-1215

5) Pat Ansell Thank you (rapid response to Hoffman)
http://www.bmj.com/cgi/eletters/333/7580/1214#151016

Competing interests:
Medical Director Care Home provider

Competing interests: No competing interests

13 March 2007
Clive E Bowman
Medical director
Helga Goutcher
BUPA Care Services, Bridge House, Outwood Lane, Horsforth, Leeds LS18 4UP