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Screening for Distress versus Providing Supportive Care: Avoiding a Conflict


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How introducing routine screening of cancer patients for distress can have unintended negative consequences.

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Screening for Distress versus Providing Supportive Care: Avoiding a Conflict

  1. 1. Screening for Distress versusProviding Supportive Care: Avoidinga Conflict4e Nationaal Congres Palliatieve Zorg Lunteren, NL 14-16 Nov 2012 James C. Coyne, Ph.D. Department of Psychiatry, University of Pennsylvania Health Psychology Program, University of Groningen
  2. 2. We would all like patients with advanced cancer to feel that they can talk to a healthcare professionalabout their concerns without feeling guilty about taking up the professional’s time.
  3. 3. We would all like patients with advancedcancer to have better management of their symptoms and better understanding of what is possible in their personal circumstances.
  4. 4. Advanced cancer patients are not receivingthe help they need.Large proportions of patients were burdenedby symptoms/problems.Of those who had received help, manyviewed it as inadequate. Better symptom/problem identification and management is warranted for advanced cancer patients.
  5. 5. Efforts to marshal the resources andpersonnel to address the needs of cancer patients can have unintendedconsequences, particularly when they areundertaken in dysfunctional systems with perverse incentives.
  6. 6. Developments in North America:Will they spread to the Netherlands?
  7. 7. An American woman Susan Krantz,received national news attention when shecomplained about her physician chargingher $50 for her having asked questionsduring her annual physical.
  8. 8. Her insurance company paid her physicianfor the physical, but not for answering herquestions.She had not been warned of the extracharge ahead of time.
  9. 9. Analysis
  10. 10. Talking to patients as a (billable) procedure.Conversations with the meter running.“We’re not paid to solvepatients’ problems, we arepaid to do procedures.”
  11. 11. American healthcare system staffed byprofessionals financed by fees for service,not guaranteed salaries.Professionals are paid for doing procedures,not engage in cognitive processes likehaving conversations and solving problems.
  12. 12. Patients who haveunmet needs to have their problems solved are given more procedures.
  13. 13. Monitoring screening for distress withquality indicators.Pfizer gives $10 million grant to Americanpsychologist to develop quality indicators tomonitor oncologists’ screening for distress.
  14. 14. Oncologists cannot close their medical recordswithout indicating whether they have asked apatient about distress.Oncologists must indicate what action was taken ifa patient report being distressed.Oncologists can comply with quality indicators byasking simply “you feeling depressed?” andprescribing antidepressants to patients whoanswer “yes” without formal diagnosis, patienteducation, or follow-up.
  15. 15. A significant proportion of breast cancer patients in the United States are prescribed an antidepressant without ever having a two weeks mood disturbance in their life.
  16. 16. NonMDs 1 Other MDS 2 Psychiatrists 3 Oncologists 4 God 5
  17. 17. “To screen or not to screen?”
  18. 18. “To screen or not to screen?”The answer is complex, and depends on thegoals, existing resources in a setting, and thereadiness of that setting to accommodate theeffects of introducing screening, intended andunintended.
  19. 19. Promise of screeningCheap, quick.With touch screen, can be integrated into routinecare in almost mechanical fashion.Identifies distress and depression that wouldotherwise be undetected.Uncovers unmet needs.Gives voice to otherwise silent or unheardpersons in need.
  20. 20. Promise of screeningScores are ambiguous as to what needs to be done.Requires follow up to resolve positive screens, involvingstaff and patient time and resources.Many needs that are identified will not have standard orready solutions.Clinical need is not equivalent to interest in or readiness toaccept services.
  21. 21. Implementation of screeningHas not been shown to improve patient outcomes.Involves reworking of pathways from patients to psychosocial services.Involves reconceptualization of provision of support in terms of billable procedures or “sessions” with professionals.Has unintended consequences including forcing the cancer experience into the mold of a mental health issue.
  22. 22. Raffle, A and Gray, M. (2007). Screening:Evidence and Practice. Oxford Press.Screening must be delivered in a well functioningtotal system if it is to achieve the best chance ofmaximum benefit and minimum harm. The systemneeds to include everything from the identification ofthose to be invited right through to follow-up afterintervention for those found to have a problem.
  23. 23. Current Dutch practices do not complywith proposed international guidelines for mandated screening.
  24. 24. Detection of Need for Care Guideline:Discussions following completion of the Lastmeter
  25. 25. Viva les Dutch! The last time I checked, the Dutch werestill talking to every patient who wished totalk, even those who were not distressed.
  26. 26. What screening is notDefinition excludes settings in which patients complete screening items or questionnaires and their responses are then used to structure discussions with professionals or peer counselors, regardless of whether the patients meet pre-established thresholds for distress.Definition excludes situations in which a questionnaire is used to facilitate a conversation independent of patients’ level of distress.
  27. 27. The basic comparative evaluationof screening:All patients screened for distress. Patientsscreening positive according to some set criteriareceive a follow up interview, in which nature ofdistress is evaluated, and a service is provided or areferral is made. versusPatients are informed about same services andhave ready access to them by self-referral orclinician referral without regard to level of distress.
  28. 28. The Basic Comparative Evaluation ofScreening All patients screened for distress. Patients screening positive according to some set criteria receive a follow up interview, in which nature of distress is evaluated, and a service is provided or a referral is made.Versus Patients are informed about same services and have ready access to them by self-referral or clinician referral without regard to level of distress.
  29. 29. No study has ever shown that patients screened for distressed have better outcomes than patients having thesame access to discussions with staffand services without being screened.
  30. 30. Screening for distress should be cautiouslyrecommended for wellresourced settings, not mandated! Be prepared for onintended consequences.
  31. 31. Alternatives to screeningEnhanced support, access to services, and followup for patients already known to be distressed orsocially disadvantaged.Provide ready access for patients to discussunmet needs with professional and peercounselors regardless of level of distress.Increase resources for addressing healthdisparities in access to psychosocial services.
  32. 32. Alternatives to screeningGive patients time to talk and listen to them, dontlet screening for distress get in the way.Dont require cancer patients to interact throughcomputer touch screen assessments.Do give them the opportunity to talk about theirexperiences, their needs, their concerns, and theirpreferences regardless of their level of distress.
  33. 33. Implementing screening for distressinvolves adopting a distress paradigmfor supportive services that will haveunintended consequences.
  34. 34. Should the services we provide to cancer patients be required to be evidence- based?
  35. 35. Of course.We need to ensure qualityservices that will improvepatient outcomes.Patients with advanced cancerare often dissatisfied with theeffectiveness of services theyreceive.
  36. 36. Of course not.Many patients seeking servicesare not distressed and socannot register animprovement.Many patients do not seekservices in order to resolvedistress.
  37. 37. Compared to what?Almost all claims of being “evidence-based”services are based on comparisons to wait listand no treatment.Providing evidence-based treatments requirestraining, credentialing, and billing.The unanswered question whether most patientsneed more than focused attention, support, andfeedback.
  38. 38. Should patients have free access to yoga? Should patients haveaccess to yoga if it is not shown to reduce their distress?
  39. 39. A struggle over who should deal with spiritual issues?
  40. 40. Should psychiatrists conduct that spiritualhistories?Should psychiatrists bill for doing meaning-centered, spiritually orientedpsychotherapy?Should pastoral counselors talk aboutspiritual issues without mental healthcredentialing?
  41. 41. Many patient concerns can be addressedwith information, support and attention, andfollow up.Fewer patients need more specializedservices, but they should have access tothem, and the services should be evidencebased.
  42. 42. ResolutionWe need to distinguish between patientsgetting the routine supportive services theyneed and getting more specialized, intensivetreatments that shouldbeevidence-based.
  43. 43. Rogers A, Karlsen S, Addington-Hall J All theservices were excellent. It is when the humanelement comes in that things go wrong:Dissatisfaction with hospital care in the last yearof life. J Advanced Nursing 31 (4): 768-774 2000Examined causes of dissatisfaction with hospital-basedcare. At least one negative comment was made by 59% ofthose making any comment. Qualitative analysis ofresponses to open questions suggest that expressions ofdissatisfaction arise from a sense of being devalued,dehumanized or disempowered and from situations inwhich the rules governing the expected healthprofessional-patient relationships were broken.
  44. 44. Alternatives to screening • Enhanced support, access to services, andfollow up for patients already known to bedistressed or socially disadvantaged.• Provide ready access for patients to discussunmet needs with professional and peercounselors regardless of level of distress.• Increase resources for addressing healthdisparities in access to psychosocial services.
  45. 45. Thank you! Follow me onTwitter @CoyneoftheRealm