By Dr. Joseph Hawkins, Consultant in Palliative Medicine, Ashford and St Peter’s Clinical End of Life Lead, Ashford and St Peter’s NHS Foundation Trust. Twitter: @JoeHawk75825077
‘I’m making them palliative, please can you come and see them’. I prefer to think of myself as the firefighter and not the arsonist- that is to say as a physician of the palliative variety I have yet to make an individual ‘palliative’. When their palliative disease necessitates my involvement I do my best to help them, mine is not the fire to light but I am good with a salve.
That we don’t make an individual ‘palliative’ is self evident to those in palliative care but the root of the phrase’s use for many bares exploring. It returns to the central tenet of medicine -measure, describe and intervene. Under such diktats the failure of a given therapy to improve an individual’s pathology must be measured as an indication of a change in state, it is not the therapy at fault, or by extension, the giver of the therapy. Rather it is the change in the pathology- one is no longer treating a condition because the condition has moved on, it is now ‘palliative’. Such logic is appealing to many as it provides a guiltless escape of thought and deed. ‘I’m sorry, we tried everything- but now your (insert loved one’s role), is palliative’. This state of being- ‘palliative’ is such that no therapy may touch it, indeed- withdrawal of active therapy must therefore be the natural phrase, and phase, that follows such a statement.
Such a black and white world excuses all manner of miscellaneous medical skullduggery: the fourth CT brain for the patient with advanced dementia and worsening confusion-done, the third week of consecutive IV antibiotics-done, after all they aren’t ‘palliative’ are they? I have started to formulate a new index of poor prognosis based upon recent investigations- 2 CT scans and an OGD seems to be a particularly poor prognostic marker when they’ve occurred within a four week period of one another.
Medicine- in its blend of art, science and experience is a playground of jargon so complicated that specialties will define the same word differently. ‘Palliative’ must be the best example of this crossed meaning of terminology.
We all search for a way of simplifying the concept of the unknown and with advances in investigatory technology the unknown may feel small and insignificant to many medical practitioners. Heuristics – the bias conceived from conceit seems likely to blame for such lopsided linguistic errors. After all, it is only by acknowledging that we won’t know the timing of death that we can start to understand the importance of planning for living within the limits of our constantly changing existence.
There is a paradox created in medicine by innovation and greater choice of therapies and yet has led to fewer good choices for those whom we recognise as dying. This is highlighted by the increase in life expectancy between 2000 and 2019 globally, from 62.7 years to 73.5 years, respectively, but also an increase in years lived with poor health from 8.6 years to 10 years in the same time frame1,2. If we lack the concept of ‘palliative’ as a state of being in which many exist for years prior to their death, a state that is consistent with a panoply of medical and surgical treatment, investigations and most importantly, not immortality, then without this concept we are unable as a society and a profession to except dying. Dying doesn’t mean stopping- stopping is perhaps the best definition of death that I can think of. Therefore if dying isn’t stopping then it must be seen as living, just more slowly. We except limitations upon us throughout life, I am a good runner but I cannot fly or jump buildings and as time goes on I recognise I no longer sprint as I did. The palliative patient may no longer run but we don’t stop our medical treatment, nor do we ask them to fly. As time passes within the context of a disease or frailty then the chances of returning to the prior level of function diminishes. Medicine must adapt but also adjust and if we help our colleagues define ‘palliative’ as we do then perhaps we can help support them and their patients as we adapt and they adjust, together.
References:
1. Wang H Abbas KM Abbasifard M et al. Global age-sex-specific fertility, mortality, healthy life expectancy (HALE), and population estimates in 204 countries and territories, 1950–2019: a comprehensive demographic analysis for the Global Burden of Disease Study 2019. Lancet. 2020; 396: 1160-1203
2. Murray CJ Abbafati C Abbas KM et al. Five insights from the global burden of disease study 2019. Lancet. 2020; 396: 1135-1159
3. https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/treatment-and-care-towards-the-end-of-life/guidance