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

1. Screening for Distress versus
Providing Supportive Care: Avoiding
a Conflict
4e 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. 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.

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.

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.

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

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.

9. 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.

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.”

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.

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

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.

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.

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.

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

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.

20. 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.

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.

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. 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.

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

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.

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.

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.

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.

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

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

37. 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.

38. 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.

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.

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

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

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?

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.

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

45. 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): 768-774 2000
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.

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.

47. Thank you!
jcoynester@gmail.com
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@CoyneoftheRealm