By Dr. Joseph Hawkins, Palliative Medicine Consultant, ASPH NHS Foundation Trust and Woking and Sam Beare Hospice. Twitter: @JoeHawk75825077
Collaborators include Sophie Dargan, Palliative Care MDT Coordinator, and Susan Dargan, Clinical Nurse.
‘It’s a travesty!’, a colleague said to me- ‘look at these scans’. I looked and agreed; those lungs resembled a Jackson Pollock painting with wild streaks of grey scale throughout. ‘This person requires a transplant’. Two hours later I was told that the patient in question was going to die and would I mind seeing them?
The tale above is a familiar one to many and one that we recognise is partly the result of a culture in healthcare that struggles with rationalising both recognition of dying and ‘active’ treatments. Modern health care encourages solutions through technology and protocols. On a mass healthcare basis, this makes sense and applied with appropriate pre-conditions such as human interactions with specialists who are trained to affirm or refute such data predictions, technological aids3 can improve the journeys of patients. Locally our department has looked at measures such as the Gold Standard Framework’s PPI (palliative prognostic Index)2, 4-7 and whether a tool designed for prognosticating in cancer might also be used in a mixed malignant and non-malignant group. The PPI is for patients with an irreversible terminal condition within the last year of life. It was developed to help with prognosis in cancer. The tool works by dividing patients in to two groups- those with a score of 6 or above: who are expected to die within 3 weeks of the score being calculated and those with a score of less than 6: who are expected to live for greater than 6 weeks. Our results indicate a positive correlation between the score in both groups and over-all. We saw a 70% positive predictive value in the whole group; comprised of 256 patients, gathered over three months and with a split of 145 who were identified as dying of a cancer and 111 patients who were recognised as dying of a non-malignant condition.
Other studies1 have looked at specific non-malignant groups but we are unaware of a broad group study such as ours and hope to use it locally to improve clarity around hospice and community specialist palliative care referrals initially.
We look to publish the full results of this internal study in the near future. However, our collective hope is that it is pieces of work like this that will continue to push forward an agenda of better care and recognising individuals who are failing to thrive and for whom we should be preparing so that they might face death together with us and those most important to them.
Ultimately, I believe that the solution for the cultural changes that need to happen in health care must come from a combination of system and personal changes within the workforce and the way we look at and engage with, talking about mortality.
Sadly, the patient in the anecdote above died on the evening that I saw them. It was a travesty-not the one my colleague was referring to, but one that I know my colleague has learned from. As I write these last words I feel I must add one thing- we are all prone to error and fallibility at times, it is our colleagues that we must rely upon to help us so that we may all do the best we can for those who rely upon us.
1 Heart 2012 98: 579-583 Kristin Haga, Scott Murray, Janet Reid, et al. Identifying community based chronic heart failure patients in the last year of life: a comparison of the Gold Standards Framework Prognostic Indicator Guide and the Seattle Heart Failure Model. doi: 10.1136/heartjnl-2011-301021
2 Prognostic scoring paper GSF; Woelk C, Harlos M, . The Karnofski , Palliative Performance Scale (PPS) and Palliative Prognostic Indicator (PPI). Microsoft Word – Prognostic_Scoring.doc (goldstandardsframework.org.uk)
3 Palliative Prognostic Index (PPI) Calculator (mdapp.co)
4 Morita T, Tsunoda J, Inoue S, Chihara S. The palliative prognostic index: a scoring system for survival prediction of terminally ill cancer patients. Supportive Care in Cancer 1999; 7: 128-33.
5 Stone CA, Tiernan E, Dooley BA. Prospective validation of the palliative prognostic index in patients with cancer. J Pain Symptom Manage. 2008;35(6):617-22.
6 Kao CY, Hung YS, Wang HM, Chen JS, Chin TL, Lu CY, Chi CC, Yeh YC, Yang JM, Yen JH, Chou WC. Combination of initial palliative prognostic index and score change provides a better prognostic value for terminally ill cancer patients: a six-year observational cohort study. J Pain Symptom Manage. 2014;48(5):804-14.
7 Lee SH, Lee JG, Choi YJ, et al. BMJ Supportive and Palliative Care Epub ahead of print. 14.6.2021. Prognosis palliative care study, palliative prognostic index, palliative prognostic score and objective prognostic score in advanced cancer: a prospective comparison. doi: 10.1136/bmjspcare-2021-003077