Ghosts in the Machine: Jonathan B. Koea MD; FRACS. Department of Surgery Auckland Hospital Auckland New Zealand

Transcription

1 Ghosts in the Machine: Patient Journeys Through Cancer Treatment Jonathan B. Koea MD; FRACS. Department of Surgery Auckland Hospital Auckland New Zealand

2 Age-Standardised Cancer Incidence (100,000 population) Maori male Non-Maori male Maori female Non-Maori female All Breast Lung Prostate CRC HCC Cervix Ovary Lancet Oncol 2008;9:473

3 Age-Standardised Cancer Mortality (100,000 population) Maori male Non-Maori male Maori female Non-Maori female All Breast Lung Prostate CRC HCC Cervix Ovary Lancet Oncol 2008;9:473

4 Age-Standardised CRC Incidence (100,000 population) Maori male Non-Maori male Maori female Non-Maori female Aust NZ J Public Health 2006;30:64

5 CRC: Presentation Local Symptoms Obstruction Perforation

6 Surgery for Colorectal Cancer

7 Natural History of Cancer

8 Colorectal Cancer in year old female Colectomy for cancer Synchronous metastasis noted 6 weeks 5-FU 30 June 1975 (R) hepatectomy 1 month hospital stay 24 mths 5-FU post-operatively Alive & 31 years

9 Treatment Summary Investigations: Barium enema Hospital stay: Colectomy 14 days Hepatectomy 32 days Blood tests: 42 Outpatient appointments: 4 in 2 years 30 chemotherapy appointments

10 What About 2008? 58 yr old female from Northland living in South Island No past medical history 3 weeks PR bleeding Reviewed by GP: 05/04/2008» Raised CEA» Mildly anaemic Hb 100 g/l» Abnormal liver function tests Referred for specialist assessment and colonoscopy

11 Locally Advanced Rectal Cancer

12 Synchronous Hepatic Metastases

13 Clinical Review Locally advanced node positive rectal cancer Seven synchronous liver metastases Outcome:» Metallic rectal stent» Palliative radiation therapy

14 Transfers to Auckland for radiation therapy 40 Gray administered over 4 weeks Stent falls out Reassessed: colorectal and hepatobiliary surgery Treatment intent revised: active therapy

15 Treatment of Rectal Primary 10/07/2008: Anterior resection No covering stoma 7 day hospital stay No complications Final Pathology: Low grade adenocarcinoma T3N1M1

16 Rectal Cancer Resection Dukes Stage Local Recurrence Systemic Recurrence A 2% 8% B 4% 18% C 7.5% 37% Nodes Number Local Systemic Patients Recurrence Recurrence (2%) 33 (11%) (5%) 30 (22%) (36%) > (23%) 7 (53%) Dis Colon Rectum 2004;47:1145

17 Treatment of Metastatic Disease Repeat CT scan MDM review 08/08/2008 begins neoadjuvant chemotherapy» Oral capcitabine» Intravenous oxaliplatin First week of therapy in Auckland Subsequently transfers to Whangarei Outpatient chemotherapy 08/09/ /01/2009

18 Liver Resection for Colorectal Cancer probability of survival multiple bilateral (n = 82) multiple unilateral (n = 114) solitary (n = 294) patients at risk p = Lancet 1994;343:1405 Years from R 0 -liver resection

19 R0 versus R1 Resection probability of survival months 44 months 41.4% (158) R0-resection (n = 490) R1/2-resection (n = 114) disease-free survival p = % (46) Lancet 1994;343: % (128) 26.5% (44) v s Years from liver resection

20 Extrahepatic vs No Extrahepatic Tumour 1.0 probability of survival Extrahepatic tumor (n = 66) No extrahepatic tumor (n = 424) patients at risk p < Lancet 1994;343:1405 Years from R 0 -liver resection

21 Surgical Follow up 05/09/2008: Initial assessment 28/11/2008: Review 03/12/2008: MDM review 23/01/2009: Review at end chemotherapy» Decision: requires portal vein embolization» Referred to radiology 17/03/2009: Follow up no word from radiology 26/03/2009: Portal vein embolization

22 Portal Vein Embolization

23 Portal Vein Embolization Pre 18% Post 31%

24 Hepatectomy 27/04/2009: Extended right hepatectomy 8 day hospital stay No complications 7 metastases in specimen Closest margin 4 mm

25 Follow Up 29/05/2009: Well, CEA normal 07/08/2009: Well, Follow up CT scan arranged Further appointment in 6 months

26 Treatment Summary Duration 61 weeks Procedures: 6 (colonoscopy x 2, ERT x 15, sigmoidoscopy, anterior resection, portal vein embolization, liver resection) Total Hospital Stay: 29 days Outpatient visits: 16 Chemotherapy 30 appointments for infusional therapy CT/MRI Scans: 8 Blood tests: 74 Travel to Auckland Hospital: ERT

27 Anxieties / Uncertainties Palliative to therapeutic? Will chemotherapy be effective? Two major operations in 1 year? Will embolization work? Wait times:» Surgery within 6 weeks of booking» Portal vein embolization in 7 weeks booking What does the future hold?

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29 But how do you survive cancer? That s the part no one gives you any advice on. What does it mean? Once you finish your treatment, the doctors say, You re cured, so go off and live. Happy trails. But there is no in place to help you to deal with the emotional ramifications of trying to return to the world after being in the battle for your existence. I was a bum. I played golf every day. I water-skied, I drank beer, and I lay on the sofa and channel-surfed. I went to Chuy s for Tex-Mex, and violated every support system rule of my training diet. Its Not About the Bike p186, 196

30 The Future? 3 6 monthly OPC review 6 monthly CT scans for 2 years then annually 3 monthly CEA Further chemotherapy Further surgery Ablative procedures (SIRT, RFA)

31 What do Maori Want? Maori providers; empathy with whanau, practical assistance Competence, warmth, honesty, respect, care Providers that meet cultural needs halfway Whanau involvement & proximity Assertive navigation Access to Rongoa Cancer Screening NZMJ 2008;121;1279

32 What do Non-Maori Want? Full & frank discussion regarding prognosis & options Prognostic information can be upsetting but still desired Retain family structure and unit Information on life effects & treatment effects Trust their caregivers (faith) Have some hope for life J Clin Oncol 2007;25:5275, J Clin Oncol 2006;24:5265, Support Care Cancer 2004;12:663, BMJ 2000;320:909

33 What Support is Available? Cancer Society of New Zealand Maori health providers Nursing and medical staff Nurse Practitioners Mainstream services Navigators Hospice

34 Cancer Society of New Zealand Operates regionally similar to Iwi based structure Salaried staff and strong reliance on volunteers Offer accommodation, transport assistance, education, support Engaged in funding oncology research Increasing national advocacy role Stated aim to contribute to care of Maori and Pacific

35 Maori Providers

36 MAPAS Intake Intake Maori Graduated

37 NZ Registered Medical Practitioners Ethnicity % Male % Female % Total European Maori Pacific Asian NZHIS Medical Practitioner Workforce Survey 2000

38 Registrars by Ethnicity Ethnicity % Male % Female % Total European Maori Pacific Asian NZHIS Medical Practitioner Workforce Survey 2000

39 Nurse Practitioners Hospital based Roving brief Preadmission patient contact Orchestration of admission issues (clinics, accommodation) Familiar with treatment algorithms (advocacy) Post procedure follow up (phone clinic) Some contact with primary care providers

40 Mainstream Organizations Bound by legislative Treaty obligations Constrained by size and complexity Institutional inertia Maori health often devolved to small numbers Maori staff Services now developing provider role as well as advisor role Mass education often required

41 Patient Navigators First implemented published studies:» 7% increase screening» 9% increase in follow up» no evidence for improving diagnosis, access outcomes» no data patient satisfaction Main tasks: finance, transportation, end of life, dependent care, scheduling of appointments 2008 NCA began Navigator Training Program J Gen Intern Med 2009;24:211, J Natl Med Ass 2008;100:1290, Cancer 2008;113:1999, Cancer 2008;113:426

42 Job Description Clinically confident Knowledge of hospital workings and structures Strong links with primary care providers Comfortable in primary, secondary and tertiary care facilities Outstanding people skills Culturally competent Sound knowledge of standards of cancer care

43 Summary Cancer care evolved rapidly in the last 10 years Management is now multidisciplinary Treatment has become complex and prolonged Survival and cure rates are improving Cancer has assumed status of a chronic disease Physical, emotional and temporal costs to patient & Whanau just being recognised

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