Planning for the future – when does the future start?

Dr Laura-Jane E SmithWellcome Clinical Research Fellow, Imperial College

Respiratory SpR, NorthEast London

@drlaurajane

November 2015

The Challenge of Palliative Care. Smith, LJE and Quint JK, in: Controversies in COPD, Publisher: European Respiratory Society. Editors: Antonio Anzueto, Yvonne Heijdra, John R Hurst, Chapter: 20 pp.297-322

YouGov poll 2014

Advance care planning

Advance statement

Advance decision to refuse

treatment

Lasting Power of Attorney

Mental Capacity Act 2005

Why do ACP?

How can we identify people nearing the end of life?

How can we put this into practice?

WHY DO ACP IN COPD?

Functional impairmentSymptom burden (breathlessness, anorexia, pain, cough, insomnia, confusion,

fatigue, low mood, anxiety, panic) Social isolation

Impaired HRQoLTreatment preferences

Invasive interventions near the end of life Advance care planning

Access to specialist palliative care services

Habraken JM et al. 2009Edmonds P et al. 2001Gore JM et al 2000

COPD Lung cancer

Mutual understanding

Enhancing openness

Enabling discussion of

concerns

Enhancing hope Relieving fear Strengthening

family ties

Debunking myths

Providing practical

advice/support

Enhancing autonomy

HOW CAN WE IDENTIFY PEOPLE NEARING THE END OF LIFE?

COPDHeart failure

Dementia Frailty

Cancer

Group task

FEV1% Hypoxaemia Breathlessness Cor pulmonale

Exacerbation frequency Hospitalisation Exercise

tolerance Biomarkers

Low BMI Older age RVSP Low serum albumin

ICU admission Co-morbid CCF Functional status Use of NIV

Nishimura 2002

Soler-Cataluña 2005 Knaus 1991, Almagro 2002

Ai-Ping 2005

Pinto-Plata 2004 Coxson 2013

Connors 1996 Connors 1996, Almagro 2002

Connors 1996 Connors 1996

Connors 1996 Dallari 1994

Anthonisen 1989 NOTT 1980

Plant 1998

Incalzi 1999

Declining functional

status

Complications eg LTOT, cor pulmonale

High use of healthcare

Symptom burden

Patient choiceTriggers eg

hospitalisation, bereavement

HOW CAN WE PUT THIS INTO PRACTICE?

laura-jane.smith@imperial.ac.ukabout.me/laurajane.smithwww.drlj.mewww.deathcafe.comwww.lahf.org.uk@drlaurajane

Age FEV1%

MRC BODE

BMI SGRQ

Surprise question

Clinician prediction

LTOT Depression

Albumin Co-morbidities

6MWT Previous NIV use

Exacerbation frequency Hospitalisation

• Age: whilst advancing age is an independent predictor of mortality (eg Celli 2005, Soler-Cataluna 2005), it is not very practically helpful in discriminating within COPD population

• FEV1%: traditionally way we determined severity, and prognosis (Anthonisen 1989). Helpful at extremes, but alone a poor predictor. Large variations in prognosis within GOLD stages

• MRC: breathlessness a better predictor of 5year survival than FEV1 (Nishimura 2002)

• BODE: Includes FEV1% predicted, 6MWT, mMRC, BMI . For each one-point increment in the BODE score the hazard ratio for death from any cause was 1.34 (95%CI 1.26-1.42) and the hazard ratio for death from a respiratory cause was 1.62 (95%CI 1.48-1.77). Score of 2 = 80% survival, score of 7 = 18% survival at 4years (Celli 2004)

• BMI: Independent prognostic factor (Landbo 1999). Falling BMI may be due to chronic systemic inflammation. Nutritional interventions not helpful. Marker, not causal. Part of BODE index.

• SGRQ: In a prospective study of patients with COPD after hospitalisation, SGRQ (total score and subscales of activity, impact and symptoms) was related to higher mortality (Gudmundsson 2006)

• Surprise question: Said to be able to identify people who would benefit from palliative care input (Murray 2011), but others think unhelpful in COPD (Small 2010). No studies testing accuracy? Depends on clinician assessment.

• Clinician prediction: Clinician’s estimates of prognosis for malignant (Parkes 1972)and non-malignant disease are inaccurate (Christakis 2000). Often overly-optimistic, and vast inter-rater variability.

• LTOT: Those on LTOT have more severe disease. Often low FEV1%, and cor pulmonale, both assoc with poorer survival.

• Depression: Those with clinical diagnosis of depression had higher mortality when adjusted for FEV1% (Stage 2004). What about milder depression? Less clear…

• Albumin: In the SUPPORT study, albumin was one of the independent predictors of mortality found, in a group of >1000 patients with COPD admitted to hospital with an exacerbation (Connors 1996).

• Co-morbidities: A number of comorbidities are associated with higher mortality (eg diabetes Gudmunnson 2006). A high Charlson index is also associated.

• 6MWT: Independent predictor, after accounting for age, BMI, FEV1 and comorbidities. (Pinto-Plata 2004). Part of BODE index.

• Previous NIV use: Hypercapnoea, and need for NIV during an exacerbation identified in a number of studies as assoc with poorer survival (eg Connors 1996, Soler-Cataluna 2005)

• Exacerbation freq: Exacerbation frequency is associated with lung function decline (Donaldson 2002) (Soler-Cataluna 2005

• Hospitalisation: Severe acute exacerbations have an independent negative effect on prognosis, particularly if they require hospital admission (Soler-Cataluna 2005)

Kaplan-Meier Survival curves for the 4 quartiles of the BODE index and the 3 stages of severity of COPD based on FEV1% as defined by the ATS.Quartile 1 = 0-2Quartile 2 = 3-4Quartile 3 = 5-6Quartile 4 = 7-10

Stage 1 = FEV1 >50% predictedStage 2 = FEV1 36-50% predictedStage 3 = FEV1 <36% predicted

• Anthonisen, Nicholas R. “Prognosis in Chronic Obstructive Pulmonary Disease: Results from Multicenter Clinical Trials.” American Review of Respiratory Disease 140, no. 3_pt_2 (September 1, 1989): S95–S99.

• Christakis, Nicholas A., Elizabeth B. Lamont, Julia L. Smith, and Colin Murray Parkes. “Extent and Determinants of Error in Doctors’ Prognoses in Terminally Ill Patients: Prospective Cohort studyCommentary: Why Do Doctors Overestimate? Commentary: Prognoses Should Be Based on Proved Indices Not Intuition.” Bmj 320, no. 7233 (2000): 469–473.

• Connors, A F, N V Dawson, C Thomas, F E Harrell, N Desbiens, W J Fulkerson, P Kussin, P Bellamy, L Goldman, and W A Knaus. “Outcomes Following Acute Exacerbation of Severe Chronic Obstructive Lung Disease. The SUPPORT Investigators (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments).” American Journal of Respiratory and Critical Care Medicine 154, no. 4 (October 1, 1996): 959–967.

• Donaldson, G. C., T. a. R. Seemungal, A. Bhowmik, and J. A. Wedzicha. “Relationship Between Exacerbation Frequency and Lung Function Decline in Chronic Obstructive Pulmonary Disease.” Thorax 57, no. 10 (October 1, 2002): 847–852.

• Edmonds, Polly, Saffron Karlsen, Saba Khan, and Julia Addington-Hall. “A Comparison of the Palliative Care Needs of Patients Dying from Chronic Respiratory Diseases and Lung Cancer.” Palliative Medicine 15, no. 4 (2001): 287–295.

• Gore, J. M., C. J. Brophy, and M. A. Greenstone. “How Well Do We Care for Patients with End Stage Chronic Obstructive Pulmonary Disease (COPD)? A Comparison of Palliative Care and Quality of Life in COPD and Lung Cancer.” Thorax 55, no. 12 (2000): 1000–1006.

• Habraken, Jolanda M., Gerben ter Riet, Justin M. Gore, Michael A. Greenstone, Els J.M. Weersink, Patrick J.E. Bindels, and Dick L. Willems. “Health-Related Quality of Life in End-Stage COPD and Lung Cancer Patients.” Journal of Pain and Symptom Management 37, no. 6 (June 2009): 973–981.

• Landbo, Charlotte, Eva Prescott, Peter Lange, Jørgen Vestbo, and Thomas P. Almdal. “Prognostic Value of Nutritional Status in Chronic Obstructive Pulmonary Disease.” American Journal of Respiratory and Critical Care Medicine 160, no. 6 (December 1, 1999): 1856–1861.

• Murray, S. A., and K. Boyd. “Using the ‘surprise Question’ Can Identify People with Advanced Heart Failure and COPD Who Would Benefit from a Palliative Care Approach.” Palliative Medicine 25, no. 4 (June 1, 2011): 382–382.

• Parkes, C. Murray. “Accuracy of Predictions of Survival in Later Stages of Cancer.” British Medical Journal 2, no. 5804 (April 1, 1972): 29–31.

• Small, N., C. Gardiner, S. Barnes, M. Gott, S. Payne, D. Seamark, and D. Halpin. “Using a Prediction of Death in the Next 12 Months as a Prompt for Referral to Palliative Care Acts to the Detriment of Patients with Heart Failure and Chronic Obstructive Pulmonary Disease.” Palliative Medicine 24, no. 7 (October 1, 2010): 740–741.

• Smith, LJE and Quint JK. The Challenge of Palliative Care in: Controversies in COPD, Publisher: European Respiratory Society. Editors: Antonio Anzueto, Yvonne Heijdra, John R Hurst, Chapter: 20 pp.297-322

• Stage, K. B., T. Middelboe, and C. Pisinger. “Depression and Chronic Obstructive Pulmonary Disease (COPD). Impact on Survival.” Acta Psychiatrica Scandinavica 111, no. 4 (April 1, 2005): 320–323.