How to model life’s trajectory from major diagnosis to death

How do we model our lives from the time of a major diagnosis to death? Illness trajectories are one method, and they can help frame a conversation about what life will be like with a progressive illness. The three characteristic trajectories of decline are rapid (typically cancer), intermittent (declining organ function), and gradual (advanced frailty, neurological conditions, or major stroke). They can be used to inform person centred care and enable advance care planning. The trajectories may appear abstract, but the lives they describe are very real.

Scott Murray and colleagues now propose a fourth trajectory to understand the lives of people with multimorbidity (doi:10.1136/bmj-2021-067896).1 Illness trajectories consider physical, social, psychological, and spiritual dimensions of wellbeing, which are best depicted in graphical form. The trajectory for multimorbidity shares some of the features of intermittent and gradual decline. What’s clear is that these tools are useful and complex and that any one person’s trajectory is inherently unpredictable, factors that lend themselves to the “digital age of big data, data science, and advanced analytics” (doi:10.1136/bmj.q510).2

Even the three established trajectories are nuanced and ever evolving. An international team led by Eric Geijteman explores the different trajectories of incurable solid cancer (doi:10.1136/bmj-2023-076625).3 New cancer treatments, such as targeted therapy and immunotherapy, have brought more success, challenge, and unpredictability. It is now possible to outline illness trajectories for people whose response to therapy is a major temporary improvement, long term response, or rapid decline after an adverse event. The figures in these education papers will be particularly useful in discussing “the prognostic uncertainty associated with systemic anticancer treatment” with patients and carers.

An accurate diagnosis generally helps, and new methods are emerging, such as capsule endoscopy for detecting varices, whose use is supported by a prospective multicentre study (doi:10.1136/bmj-2023-078581).4 Capsule endoscopy works as follows: a patient swallows a capsule attached to a string; the capsule detaches in the oesophagus, its passage through the stomach is magnetically controlled, and examination of the small bowel continues with the aid of peristalsis. It is, say our editorialists, an important opportunity for less invasive investigation, such as of varices (doi:10.1136/bmj.q506).5

Not all magnets are benevolent. Nancy Olivieri’s decades long fight to expose the harms of an experimental drug for thalassaemia major involved numerous court cases and a brave pursuit of truth (doi:10.1136/bmj.q526).6 It resulted in an acknowledgment from novelist John Le Carré that his book A Constant Gardener was “as tame as a holiday postcard” when compared with reality. Olivieri’s whistleblowing won her the John Maddox prize for people who stand up for science and evidence. The manoeuvrings of drug companies continue to deliver commercial success and raise alarm (doi:10.1136/bmj.q408).7 Philosopher Carl Elliott mused that doctors need a moral compass but that if you put a magnet next to the moral compass it is rendered useless. The influence of pharmaceutical companies is a magnet. Olivieri urges us, in research and in patient care, “to rid ourselves of the pernicious magnet.”

Journals can help but can also add to the problem, especially when those journals are predatory or built on peer review systems of sand (doi:10.1136/bmj.q452).8 For our part, the first line of defence in defeating pernicious magnets is the dedication of our staff. Linda Beecham, a former BMJ colleague, died earlier this year from metastatic cancer of unknown primary (doi:10.1136/bmj.q481).9 Her life, I now fully appreciate, followed the illness trajectory of rapid decline. I also now appreciate that Linda had many passions inside and outside The BMJ, including a love of the arts. This didn’t extend, as far as we know, to a love of cosplay, which Cristina Costache considers a “great way to switch off from work” but regrets isn’t especially popular among NHS colleagues (doi:10.1136/bmj.q400).10