1. Screening for Distress versus Providing Supportive Care: Avoiding a Conflict
4e Nationaal Congres Palliatieve Zorg Lunteren, NL Nov 2012
James C. Coyne, Ph.D. Department of Psychiatry, University of Pennsylvania Health Psychology Program, University of Groningen

2. We would all like patients with advanced cancer to feel that they can talk to a healthcare professional about their concerns without feeling guilty about taking up the professional’s time.

3. We would all like patients with advanced cancer to have better management of their symptoms and better understanding of what is possible in their personal circumstances. 3

4. 4

5. Advanced cancer patients are not receiving the help they need.
Large proportions of patients were burdened by symptoms/problems.
Of those who had received help, many viewed it as inadequate.
Better symptom/problem identification and management is warranted for advanced cancer patients. 5

6. Efforts to marshal the resources and personnel to address the needs of cancer patients can have unintended consequences, particularly when they are undertaken in dysfunctional systems with perverse incentives. 6

7. Developments in North America: Will they spread to the Netherlands?7

8. An American woman Susan Krantz, received national news attention when she complained about her physician charging her $50 for her having asked questions during her annual physical. 8

9. She had not been warned of the extra charge ahead of time.
Her insurance company paid her physician for the physical, but not for answering her questions.
She had not been warned of the extra charge ahead of time. 9

10. Analysis

11. Talking to patients as a (billable) procedure.
Conversations with the meter running.
“We’re not paid to solve
patients’ problems, we are
paid to do procedures.” 11

12. American healthcare system staffed by professionals financed by fees for service, not guaranteed salaries.
Professionals are paid for doing procedures, not engage in cognitive processes like having conversations and solving problems. 12

13. Patients who have unmet needs to have their problems solved are given more procedures.13

14. Monitoring screening for distress with quality indicators.
Pfizer gives $10 million grant to American psychologist to develop quality indicators to monitor oncologists’ screening for distress. 14

15. Oncologists cannot close their medical records without indicating whether they have asked a patient about distress.
Oncologists must indicate what action was taken if a patient report being distressed.
Oncologists can comply with quality indicators by asking simply “you feeling depressed?” and prescribing antidepressants to patients who answer “yes” without formal diagnosis, patient education, or follow-up. 15

16. 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

17. 1 2 3 4 5
NonMDs
Other MDS
Psychiatrists
Oncologists
God 17

18. “To screen or not to screen?”

19. “To screen or not to screen?”
The answer is complex, and depends on the goals, existing resources in a setting, and the readiness of that setting to accommodate the effects of introducing screening, intended and unintended. 19

20. Identifies distress and depression that would otherwise be undetected.
Promise of screening
Cheap, quick.
With touch screen, can be integrated into routine care in almost mechanical fashion.
Identifies distress and depression that would otherwise be undetected.
Uncovers unmet needs.
Gives voice to otherwise silent or unheard persons in need. 20

21. Promise of screening Scores are ambiguous as to what needs to be done.
Requires follow up to resolve positive screens, involving staff and patient time and resources.
Many needs that are identified will not have standard or ready solutions.
Clinical need is not equivalent to interest in or readiness to accept services. 21

22. Implementation of screening
Has 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.

24. Raffle, A and Gray, M. (2007). Screening: Evidence and Practice
Raffle, A and Gray, M. (2007). Screening: Evidence and Practice. Oxford Press.
Screening must be delivered in a well functioning total system if it is to achieve the best chance of maximum benefit and minimum harm. The system needs to include everything from the identification of those to be invited right through to follow-up after intervention for those found to have a problem.

25. Current Dutch practices do not comply with proposed international guidelines for mandated screening.25

26. Detection of Need for Care Guideline: Discussions following completion of the Lastmeter26

27. Viva les Dutch!
The last time I checked, the Dutch were still talking to every patient who wished to talk, even those who were not distressed. 27

28. What screening is not
Definition 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.

29. The basic comparative evaluation
of screening:
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.

30. The Basic Comparative Evaluation of Screening
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.

31. No study has ever shown that patients screened for distressed have better outcomes than patients having the same access to discussions with staff and services without being screened. 31

32. Screening for distress should be cautiously recommended for well resourced settings, not mandated! Be prepared for on intended consequences.

33. Alternatives to screening
Enhanced support, access to services, and follow up for patients already known to be distressed or socially disadvantaged.
Provide ready access for patients to discuss unmet needs with professional and peer counselors regardless of level of distress.
Increase resources for addressing health disparities in access to psychosocial services. 33

34. Alternatives to screening
Give patients time to talk and listen to them, don't let screening for distress get in the way.
Don't require cancer patients to interact through computer touch screen assessments.
Do give them the opportunity to talk about their experiences, their needs, their concerns, and their preferences regardless of their level of distress. 34

35. Implementing screening for distress involves adopting a distress paradigm for supportive services that will have unintended consequences. 35

36. Should the services we provide to cancer patients be required to be evidence-based?36

37. We need to ensure quality services that will improve patient outcomes.
Of course.
We need to ensure quality services that will improve patient outcomes.
Patients with advanced cancer are often dissatisfied with the effectiveness of services they receive. 37

38. Many patients do not seek services in order to resolve distress.
Of course not.
Many patients seeking services are not distressed and so cannot register an improvement.
Many patients do not seek services in order to resolve distress. 38

39. Compared to what?
Almost all claims of being “evidence-based” services are based on comparisons to wait list and no treatment.
Providing evidence-based treatments requires training, credentialing, and billing.
The unanswered question whether most patients need more than focused attention, support, and feedback. 39

40. Should patients have free access to yoga?
Should patients have access to yoga if it is not shown to reduce their distress? 40

41. A struggle over who should deal with spiritual issues?41

42. Should psychiatrists conduct that spiritual histories?
Should psychiatrists bill for doing meaning-centered, spiritually oriented psychotherapy?
Should pastoral counselors talk about spiritual issues without mental health credentialing? 42

43. Many patient concerns can be addressed with information, support and attention, and follow up.
Fewer patients need more specialized services, but they should have access to them, and the services should be evidence based. 43

44. treatments that should beevidence-based.
Resolution
We need to distinguish between patients getting the routine supportive services they need and getting more specialized, intensive
treatments that should
beevidence-based. 44

45. Rogers A, Karlsen S, Addington-Hall J 'All the services were excellent
Rogers A, Karlsen S, Addington-Hall J 'All the services were excellent. It is when the human element comes in that things go wrong': Dissatisfaction with hospital care in the last year of life. J Advanced Nursing 31 (4):
Examined causes of dissatisfaction with hospital-based care. At least one negative comment was made by 59% of those making any comment. Qualitative analysis of responses to open questions suggest that expressions of dissatisfaction arise from a sense of being 'devalued', 'dehumanized' or 'disempowered' and from situations in which the 'rules' governing the expected health professional-patient relationships were broken. 45

46. Alternatives to screening
Enhanced support, access to services, and follow up for patients already known to be distressed or socially disadvantaged.
Provide ready access for patients to discuss unmet needs with professional and peer counselors regardless of level of distress.
Increase resources for addressing health disparities in access to psychosocial services. 46

47. Thank you!
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