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Where Are We Going Wrong? The Story of Unnecessary Deaths and Suffering

This insightful text delves into the sequences in oncological care, emphasizing early detection, accurate staging, proper diagnosis, treatment options, rehabilitation, and palliative care. It highlights the importance of addressing precursor stages of cancer for better survival rates and discusses the challenges and decisions faced in multidisciplinary teams. The narrative questions existing practices and guidelines, advocating for personalized medicine and improved access to essential diagnostic resources. Additionally, it explores the necessity of supportive care and rehabilitation programs for patients to reintegrate into society confidently.

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Where Are We Going Wrong? The Story of Unnecessary Deaths and Suffering

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  1. Where are wegoingwrong?The story behindunneccessarydeaths and suffering Renée Otter, MD, PhD…..

  2. Sequences in oncological care Treatment A Earlydetection staging diagnosis Treatment B rehabilitation Palliative care Patients’ pathway (journey)

  3. Sequences in oncological care Treatment B Treatment A Earlydetection staging diagnosis Treatment C rehabilitation Palliative care Patients’ pathway (journey)

  4. Sequences in oncological care Treatment B Treatment C Re-staging Treatment A Earlydetection staging diagnosis rehabilitation Palliative care Patients’ pathway (journey)

  5. Patients’ pathway (journey) Earlydetection diagnosis staging Treatment A Treatment B rehabilitation

  6. Earlydetection • Reason for this: tackleprecursor situations to cancer or cancer in an early stage as « the earlier the cancer isdetected, the bettersurvival »

  7. Earlydetection • Not all precursor stages of cancer (dysplasia) lead to cancer • If precursorstages of cancer (dysplasia) lead to cancer, the real lead time isunknown (varyfromsomeyears to >20) •  overtreatment? Undertreatment!

  8. Earlydetection • Reason for this: tackleprecursor situations to cancer or cancer in an early stage as « the earlier the cancer isdetected, the bettersurvival » • Individual (PSA) • Organised (screening programme) • Participation depends on a.o. the public awareness of symptoms (and the character of the person), the knowledge of the GPs • knowlegde of how to do the tests (based on what?? • by whom • where to go if ever the results are not « within the norms » • The health system shouldstimulate participation and knowledge

  9. Sequences in oncological care Treatment B Treatment A Earlydetection staging diagnosis Treatment C rehabilitation Palliative care Patients’ pathway (journey)

  10. Diagnosis and staging • Once screening or symptoms (rare find by chance) • Diagnosisneeds: • Knowledge on the 150 different types and subtypes of malignancies: Cancer is NOT 1 disease • physicalexamination • Radiology (+ nuclearmedicine) • Pathology •  synthesis : diagnosis AND stage • Stage necessary to plan the right treatments

  11. Diagnosis and staging • Where are wegoingwrong • Knowlegde of the GP to whom to refer • Knowledge of the medicalspecialist: if not a cancer specialist (but vice versa istruetoo!!) • Availability of diagnostic equipments ( financial position of a country) AND • trainedradiologists!!! • Trainedpathologists intra – and intervariabilitypanels • Availablility of dedicated MDT ( different disciplines of medicalspecialists) • Knowledge and availability of evidencebased guidelines and staging classifications (TNM)

  12. Diagnosis and staging • Wherecanweget information? • On delay on diagnosis and staging • On minimal imagingtechnics for that cancer • On Quality of the radiologist and pathologist?? • Will this information of any help? To whom? • Sensation and loss of confidence for nothing!! thatswherewe are goingwrong. • Second opinion: isitindependant?!

  13. Sequences in oncological care Treatment B Treatment A Earlydetection staging diagnosis Treatment C rehabilitation Palliative care MDT

  14. Multidisciplinary teams • Who are they: • Combination of diagnosic and treatmentspecialists • Trained • Experienced • Integrated • Sharesresponsabilities in takingdecisionsconcerningtreatment plan

  15. Multidisciplinary teams • Where are wegoingwrong? • Trained?!Are therespecial training programmes, are somespecialisationsrecognisedlikeonco-urologists?! NO EU decisions • Experienced: whatdoesthismean: volume? Outcome? % of complications? What about a small country??what about rare cancers? Variation among EU ishuge • Integratedin a dedicated team : requests trust and confidence!!! • How to measurewhatis right and wrong? Complication rates?? survival?? Patients experiences?? • Financial position of medicalspecialists in a private versus public sector • Who/ whatwill & cantake the decisionsconcerningwhich team isdedicated?!

  16. MedicalTreatment • Where are wegoingwrong? • How to measurewhatis right and wrong? • Are evidencebased guidelines alwaysproviding the right treatmentopportunities for every one?? Individual/personalizedmedicine??? • Availability of new or expensivedrugs? Be careful as drugsonly have a small impact on the survival

  17. Treatmentaccording to guidelines

  18. No « changes » in stage over 10 years • More stage I breast cancer because of the change of TNM classification • Increase in stage I prostate cancer because of PSA • No change in stage in colon cancers; in rectal cancers less stage I & II because of procedures: endo-echo, MRI, Pet scan • More stage IV lung cancer because of PET scan

  19. Sequences in oncological care Treatment B Treatment A Earlydetection staging diagnosis Treatment C rehabilitation Palliative care Supportive care

  20. Rehabilitation • Support patients to go back to the society • Hugeproblem the more patients become (ex) patients increasesurvivorship • Are thereGLs? Trainedprofessionals?? • No impact on survival but on Quality of life • «  LIVING NOT SURVIVING »

  21. From the OECD • Differences in cancer survival • half of it may be explained by the available resources (imaging techniques ,infrastructure, new drugs, NHE) • ¼ by process quality of delivery of care(early detection, access,optimal treatment) • ¼ by governance (NCCP, coordination….) • Where are we going wrong? • Do we treat survival or quality of life?????

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