Participation of patients in decisions about treatment for cancer
BMJ 2001; 323 doi: https://doi.org/10.1136/bmj.323.7322.1144 (Published 17 November 2001) Cite this as: BMJ 2001;323:1144
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Oh dear. Just when you’d got us used to the idea that BMJ editorials
were written in clear direct English, you allow Professor Fallowfield to
write: “Patients cannot participate in decision making to their desired
extent unless they have the right types of information, given in ways
optimal for their own level of understanding.”
Does she mean “Patients can’t get as involved as they may wish in
making decisions unless they’re given reliable information in a form they
can understand”? If she does – or if she doesn’t – why not say so?
Other sentences pose problems for those of us whose cardiovascular
apparatus is not what it used to be. I grew dyspnoeic long before I got to
the end of: “True patient participation, which may include an expressed
preference by the patient to assume a more passive role about the type of
information they require, and involvement in decision making is, for most,
an unachievable goal unless we see some real improvements in the current
system of healthcare delivery.”
One problem with the Decorated Municipal Gothic (DMG) prose[1] in
which this editorial is cast is that it deters readers by constantly
forcing them to do the interpreting that the author should have done on
their behalf. It keeps intruding between the readers and the information
wrapped up in it – and the information in this editorial is worth having.
Another problem with DMG is that it encourages enigmatic utterance.
For instance, the statement, “consequently patients may be agreeing to
different treatments without being aware of their side effects”, raises
the question “different from what?”. I reread the surrounding paragraph
several times and decided the only way to understand this bit was to go
back to the original reference. As that was not readily available I turned
my mind to less burdensome matters.
Those of us who presume to write about “communication” need
constantly to monitor our own skills.
1. O’Donnell M. Evidence-based illiteracy: time to rescue “the
literature". Lancet 2000; 355: 489-91
Competing interests: No competing interests
Delivery of information beyond the medical consultation
EDITOR – Although Lesley Fallowfield does not state how she proposes
making “a clear distinction” in the clinical setting between patients’
desire for information and their wish to assume responsibility for
decision making 1, we strongly endorse her point (also made by the NHS
Information Authority)2 that there exists a general need for patient-
centred information that should be objectively appraised.
In 1998, we utilised inherent differences between the amount of
written information offered to patients in our department receiving
clinical trial chemotherapy compared to those receiving standard
chemotherapy. Although levels of satisfaction were generally high,
patients in trials were significantly more likely to remember receiving
information about alternative treatments, remember giving formal consent,
and were significantly more likely to have received the information from a
hospital nurse.3 Interestingly, the patients in trials were more likely
to approach a nurse with questions about diagnosis or treatment.
The Leicestershire Cancer Network has subsequently established
Patient Information Pathways for the common cancers, consisting of routine
consultations with specialist nurses, palliative care nurses, research
nurses, radiographers or dieticians who offer patients standardised
information leaflets and a list of sources of other information available
to them. In particular, a system of routine consultations has been
established prior to the first attendance for standard or trial treatment,
in which a chemotherapy nurse sees the patient and offers them a regime-
specific leaflet. More recently, we have also established a Patient
Information Centre, completely separate from the Chemotherapy Suite,
allowing anonymous access to a trained counsellor. Auditing of patient
satisfaction is ongoing, in a fashion comparable to the previous study.
In view of the “overburdened clinics with too few doctors” mentioned
by Prof Fallowfield, we propose that the worthy goal of increased
information for patients may be more achievable with the help of nurses
and trained support staff.
Ricky A Sharma
Clinical Lecturer
Karen Brockless
Clinical Nurse Team Leader
Sandy Geddes
Patient Information Co-ordinator
R Paul Symonds
Reader
University Department of Oncology, University Hospitals of Leicester,
Leicester LE1 5WW
ras20@le.ac.uk
1 Fallowfield L. Participation of patients in decisions about
treatment for cancer. BMJ 2001; 323: 1144.
2 NHS Executive. Cancer Information Strategy. London: NHSE, 2000.
3 Sharma RA, Symonds RP, O’Byrne KJ, Cheater F, Abrams KR, Steward WP.
Involving patients in treatment decisions: Can we learn from clinical
trials? Clin Oncol 2001; 13: 328-332.
Competing interests: No competing interests