22 Sep, 16 | by Jenny Thomas
by Dr Ollie Minton, Macmillan consultant and honorary senior lecturer in palliative medicine.
I do not assume everyone has an intricate knowledge of Shakespeare but most will be familiar with the balcony scene in Romeo & Juliet. The inference is that the name of something does not affect how it functions. I won’t extrapolate that any perceived speciality conflict is on a par with the Montagues & Capulets. Although there is an on-going debate about how we should best work together & within that how best to name ourselves.
However, if the plural of anecdote does not equal data then I am left wondering what the technical term is for the extrapolation of a single trial result. We can all accept the evidence hierarchy mantra (with some qualitative side bars) & that meta-analysis is “king”.
It is why I need to question the need to alter the word palliative to supportive.
The evidence, such as it is, comes from a 2009 trial in an American cancer centre. This was a survey of medical oncologists & while I won’t argue with the conclusions that renaming the service resulted in more referrals, I do wonder if it clouds a more nuanced issue. Attempts to address this subsequently focus on broader working relationships and less on the specific terminology of the service. However these approaches are open to wide local variation depending on staff and organisational setup- the name of the service is one aspect. The demand for all our services is increasing year on year regardless.
I am aware the journal is called supportive and palliative care and the two words are a powerful combination. All health care professionals provide “supportive care” or at least they should, as the reports of care of the dying patient make it clear “it’s everybody’s business”. This is further complicated by regulatory guidance from e.g. the UK General Medical Council which refers to end of life care. This is probably akin to other speciality terminology – geriatricians debating frailty, deconditioning & the impact of multiple co-morbidity. We all have some understanding of these terms but the exact definition & interpretation will differ amongst professionals. We are probably all guilty of speciality specific blinkering but I’d like to think just because I have a hammer in my toolbox… A debate about the rights and wrongs of specific words is not necessarily relevant to patient care.
If the name of the service was important to patients then I would be less recalcitrant. A trial attempted to address this issue, but I am still left wondering. The design is overly complex (2x 2 factorial) in a small number of patients and the wording was combined with differing descriptions of the service. At a time when openness and transparency to enable decision making is paramount, I don’t think a statistically significant change with a 0-10 scale is the outcome measure of choice.
I come back to the fact we do not solely deal with cancer; any proposed name changes are as a result of at most 50% of our referrals. Anecdotally our relationship locally with oncology is clear – oncologists refer to my colleagues in palliative care in order to develop, highlight and/or augment the serious illness conversations that palliative patients need and of course deal with their symptoms. They may emphasise certain aspects of our role – such as a focus on symptom control rather than end of life care, but I have never been aware of anyone not referred to palliative care, for fear of what our service name may do to the patient. We, for our part, minimise any obstacles to seeing appropriate patients and while there are a variety of models we can adopt, we need to be resolute in the approach and service we offer. We should be proud that a palliative ( & supportive) approach does not discriminate about diagnosis/ stage but is based on need and the name does not alter that.