Tools & Resources for Prognostication Caroline Walker Community Matron October 2012

Prognostication Why is it important? What tools / resources are available? Could we utilise these to facilitate more equitable palliative care? Group ideas

Why is it important? Identifying people approaching end of life is where end of life care begins (End of life Care Strategy DoH 2008) “Improving this identification and being more proactive in pre-planning of care would be one of the best ways to improve end of life care.” (Thomas 2010, p. 26). NOT helpful particularly to define exact timescales (for pts, families or professionals) e.g. answering `Howl long have I got’? Prognosication v.s Predication of Need Rainy Day thinking

End of Life Care Strategy (DoH 2008) Aims to ensure that all adults receive high quality care at the end of life, regardless of their age, place of care or underlying diagnosis

End of Life Care Strategy (DoH 2008)

Reflection How good are we at identifying patients approaching the end of life? Think about last GSF. How were these patients identified? Who identified them (GPs/Macmillan Nurses/DNs c.f. PNs/specialist nurses) How many pts were on the list (average 25 pts/GP per year?) What % had cancer? How many did not have cancer? Why is this (lead to prognostication difficulties/trajectories and difficulties when trying to separate palliative from active tx)

Models showing involvement of palliative care A + B = model of palliative care in cancer C = proposed model for heart failure Early Palliative care intervention may help to improve communication and address the issues surrounding sudden death At end of life palliative care may play a greater role but it is likely that at least some of their active HF treatments will continue. Gibbs et al (2002, p. ii37)

Examples of Prognostication Tools Surprise question (Developed by Joanne Lynn in United States, Lynn 2005) GSF Prognostic Indicator Guidance (4th Edition 2011, includes surprise question, general indicators of decline and disease specific indicators) SPICT Tool Karnofsky Performance Scale ECOG Performance Status Scale Disease specific tools / Models (e.g. Child Pugh Score for advanced liver disease, PREDICT model for Breast Cancer, heart failure models e.g. Beattie 2007, Metra 2007) PiPs Prognostic Tool for Advanced Cancer (Gwilliam et al 2011) SPICT tool – Supportive and Palliative Care Indicators Tool Bit of a minefield??? Less is more???

Surprise Question “Would you be surprised if the patient were to die in the next year or month or weeks or days?” What factors might this intuitive question be taking into consideration? E.G. Co-morbidities, social factors, choices,

From GSF PIG 2011

General Indicators Functional performance status declining (e.g. Barthel, Karnofsky, ECOG) e.g. limited self-care, in bed or chair 50% of day. and increasing dependence in most activities of daily living Co-morbidity (regarded as the biggest predictive indicator of mortality and morbidity) General physical decline and increasing need for support Advanced disease - unstable, deteriorating complex symptom burden Decreasing response to treatments, decreasing reversibility Choice of no further active treatment Progressive weight loss (>10%) in past six months Repeated unplanned/crisis admissions Sentinel Event e.g. serious fall, bereavement, transfer to nursing home Serum albumen <25g/l DS1500 eligability

GSF Specific Indicators Cancer (Metastatic disease, reduced functionality) Organ Failure (erratic decline) COPD (severe, MRC 4/5, LTOT, cor pulmonale, admissions/exacerbations, Low BMI, NIV) Heart Failure (NYHA stage 3/4, admissions, symptoms despite optimal tolerated therapy) Renal Disease (Stage 4/5 CKD, not choosing / discontinuing dialysis, symptomatic renal failure) Neurological Diseases (physical/cognitive deterioration, complex symptoms, weight loss, dysphagia, dysphasia, aspiration pneumonias) Frailty / Dementia (gradual decline) Indicators for frailty, dementia and stroke. Cancer: Metastatic disease / functional ability

Could we utilise prognostication tools to facilitate more equitable palliative care? How can we make a difference now? How could we make a difference in the future? Think about current caseloads…are there any patients you can think of that might meet PIG criteria (start first with surprise question, then general indicators, then specific indicators). Are these patients already on the GSF. If not, why do you think that is? Making a difference: Reviewing current caseloads (DNs, CMs, ?peer reviews) Working with PNs to review COPD / Heart failure registers Improved communication to/from specialist teams and secondary care (e.g. medics identifying potential GSF candidates on discharge letters) Using MDT meetings ?Single point of referral

References Beattie, J. (2007) Implantable cardiac defibrillators in patients who are reaching the end of life. British Heart Foundation. Department of Health (2008) End of Life Care Strategy: Promoting High Quality Care for all adults at the end of Life Gibbs, J. et al (2002) Living with and dying from heart failure: the role of palliative care. Heart 88 (suppl ii): ii36-ii39 Gold Standards Framework (2011) Prognostic Indicator Guidance Version 4 http://www.cheshire-epaige.nhs.uk/ePaige%20Documents/GSF%20updated%20guidance%20Sept%202011.pdf Gwilliam, B. et al 2011 Development of Prognosis in Palliative care Study (PiPS) predictor models to improve prognostication in advanced cancer: prospective cohort study. BMJ 343 Metra,M. et al (2007) Advanced chronic heart failure: A position statement from the Study Group on Advanced Heart Failure of the Heart Failure Association of the European Society of Cardiology. European Journal of Heart Failure, 9, p.684-694 SPICT Guidance University of Edinburgh (2010). Supportive and Palliative Care Indicators tool (SPCIT) www.palliativecareguidelines.scot.nhs.uk/careplanning/ Thomas, K. (2010) Using prognostic indicator guidance to plan care for final stages of life. Primary Health Care 20 (6) p. 25-28.