This document discusses improving cancer communication between doctors and patients. It begins with some cancer epidemiology statistics in the US. The main points are: - The language used in oncology, such as "war on cancer", can imply meanings that increase patient anxiety and imply blame. - Terms like "early detection" and "screening saves lives" may give patients a false sense of prevention or cure. - Doctors should acknowledge patient emotions, use plain language, present information in bite-sized chunks, and encourage participation in decision making. - When discussing risks, benefits, and the future, doctors should address patient concerns directly and not minimize their experiences. The goal is to provide trust and hope while still being honest.

1. Communicating Cancer:
Hope and Truth
Don S. Dizon
Massachusetts General Hospital
Harvard Medical School

2. Disclosure
Deputy Editor
Oncology and Palliative Care
UpToDate, Inc.

3. Objectives
 To better understand how the language of
oncology often implies dual meanings in
the discussion of risk, diagnosis, and
treatment.
 To heighten awareness of the power of
communication
 To discuss ways to incorporate more
sensitivity in to communications

4. Outline
 Perspective: Cancer epidemiology
 Importance: How communication impacts
for women facing a diagnosis of cancer and
those living with cancer
 Improvement: Methods to improve
communication and retain hope

5. Epidemiology of Cancer
 Nearly 2 million
cases each
year
There are over 14 million cancer
survivors in the US alone
 Almost 600K
will die
 1 in 4 deaths in
the US
 AA > Whites at
risk
Siegel, R., Naishadham, D. and Jemal, A. (2013), Cancer statistics, 2013. CA: A Cancer Journal for Clinicians, 63: 11–30.

6. Why the ―how‖ of
communication matters…
http://connection.asco.org/Commentary/Article/ID/3219/The-Power-of-Words.aspx

7. Especially to our patients
http://connection.asco.org/Commentary/Article/ID/3219/The-Power-of-Words.aspx

8. ―Screening saves lives‖
 Common mantra- but define your audience
 Perspectives on this ―truism‖ are not
universally positive, especially after
diagnosis
Screening = Early Detection ≠ Prevention ≠
Cure
―Early detection [of breast cancer] is not the
answer. Finding and treating all stage 0 breast
cancer will not prevent all breast cancer
deaths.‖
http://connection.asco.org/Commentary/Article/id/3368/On-Cancer-Prevention-Risk-Reduction-and-Cure.aspx

9. After diagnosis:
The ―War on Cancer‖
 John Donne (1624): Illness is a ―cannon
shot‖; a ―siege [that] blows up the heart‖
(Devotions Upon Emergent Occasions)
 In 1864, Louis Pasteur (1864): Germ
theory as an ―Invastion‖
 Richard Nixon (1971): Publically declared
the ―war‖ on cancer [the ―relentless and
insidious enemy‖]

10. ―War on Cancer‖
 War = Battles to be won and lost
 Patients = Soldiers?
 Doctors = Generals?
 Mammograms = Guards?
 Chemotherapy = Weapons?
 Death = Defeat?

11. The language of blame -―Lifestyle choices raise your risk‖
SJ: I don't understand how
this happened to me.
MD: Some studies have
shown women who haven't
had children have an
increased chance of getting
it.
SJ: I see. So I brought this
on myself?
Sex And The City. Season 6, Episode 15, ―Catch-38‖

12. ―Lifestyle choices‖
SJ: Give me my chart. I'm
going to find some woman
doctor, some hot woman
doctor who understands
what this is all about.
MD: I just meant
statistically...
SJ: You're lucky to have
touched my breasts.
Sex And The City. Season 6, Episode 15, ―Catch-38‖

13. When words are meant to be
reassuring…
 ―Well, ―At least you caught it early‖
 Consider what this might mean:
 Early stage = excellent prognosis
 Early stage = Don‘t need to worry
 Early stage = Won‘t need
chemotherapy or radiation
 Early stage = It won‘t kill you
http://wildrosespirit.wordpress.com/category/cancer-humor/

14. Treatment as a ―benefit‖-Breast reconstruction
 Type of breast surgery is a difficult decision
for patients with breast cancer
 Breast reconstruction is never seen as a
potential benefit
http://wildrosespirit.wordpress.com/category/cancer-humor/; http://www.butdoctorihatepink.com/2011/07/things-people-say-tobreast-cancer.html

15. Minimizing side effects
doesn‘t help
―You‘ll look just fine even without hair‖
―It‘s devastating… experiencehair
Hair loss is a traumatic with no in
over 50% of women undergoing
there is no going back to
chemotherapy
normal. C MacGregor, The
 Trivializing the effect is detrimental
Globe patients may experience 2011
Rarely, and Mail, Mar 16,
persistent alopecia
 Incidence is 3% among patients
treated with docetaxel
McGarvey EL, et al. Cancer Pract 2001; 9:283; Bourgeois H, et al. SABCS 2010.

16. After Treatment Language
―Go and live your life.‖
 End of treatment = Fear of Recurrence
 Time of increased anxiety
 Expectations are unclear  What is the
―New Normal‖
 All survivors require follow-up…
 Is the cancer experience ever over?

17. How can we do better?
 Oncology is an extreme model for medicine
 Unpredictable disease
 Dire diagnosis
 No guarantees
• Physicians and their patients experience:
 Anxiety
 Uncertainty
 Distress

18. Facts about most
cancers
 Not everyone is curable
 Prognostic factors widely known, vary by
cancer
 For newly diagnosed, non-metastatic: one
chance for cure
 Adjuvant treatment=curative intent
 Treatments are toxic
 Biologic therapy IS NOT NECESSARILY
less toxic
 Side effects don‘t end with treatment

19. What we say…
• Biology/Science
• Cancer is a heterogenous disease
• Molecular profiles are showing it‘s really not
one disease
• Natural History
• Spreads via hematogenous, lymphatic, or
local means
• Treatments/Options will vary

20. May not be what ―he‖ hears
• Biology/Science:
• This is a bad tumor
• Oh my god- Im going to oncologist
die
• Natural History:
• Its really bad
• Oh my god- Im going to die
• Treatment options:
• These sound bad
• Either I‘m going to die of cancer or these
treatments will kill me

21. Bottom Line
• Patients want information
So engage cognitively
• Patients do NOT want to lose hope
AND engage affectively

22. How can we do better?

23. A Communication Toolkit
Acknowledge emotion
During initial visits:
 Plain language
 Don‘t assume prior knowledge
 Address elephants
 Give info in bite-size chunks
 Ask for a ‗teach-back‘
Presented by:
Dizon DS, Politi MA, Back AL. ASCO Educ Book 2013: 442-46.

24. A Communication Toolkit
Approaching Decisions
 Outline options (benefits and risks)
 Build on values and preferences
 Encourage participation of others
 Invite to share in decision making
 If overwhelmed- bring them back again

25. Acknowledge emotions
 Studies show it doesn‘t happen often enough:
 Duke study: 398 oncology visits (51
oncologists)
 Analyzed for instance of emotion
acknowledgement by oncologist
 Result:
 292 empathic opportunities
 Clinician response recorded 27% of the
KI Pollack, et al. J Clin Oncol 2007; 25:5748-5752.
time

26. Respond to Emotion- It
matters
Clayton: Patients want honesty, and
accuracy, provided empathically and with
understanding
Jansen: Acknowledging emotions enables
patients to hear more
 Enables retention of information/education
Clayton JM, et al. Psychoonc 2008; 17:641-59; 11:47-58; J Jansen, et al. Pat Ed
and Counsel 2010; 79:218-24.

27. Regarding treatment
1.Plain language
2.Use frequencies rather than
percentages
3.Explain BOTH benefits and
risks.

28. Benefits and Risks
Make sure to define ―benefits‖
 Use absolute rather than relative risks
 Use graphics to explain statistics
Risks are important
Together  Will inform preferences based on
one‘s values
MedX: Evidence based
guidelines are not mandates.

29. Offer to discuss the
future
―How much have you been worrying about
the future?‖
―Sometimes people are a bit hesitant to ask
about what to expect, or statistics, or
prognosis‖
―What information about the future could
help you be prepared?‖
Presented by:

30. Ask for a ‗teach-back‘
―Tell me what you‘re going to tell your best
friend about this—it will help me know if I‘ve
been clear.‖
―What are you taking away from this part of
our discussion‖
Presented by:

31. Praise is positive
Use the power of positive reinforcement
Not meaningless positive feeling
Appreciation for the work of being a
patient
- work of understanding
- thoughtful decision making
- consideration for others
Presented by:

32. In Summary
• Address the elephant in the room first
• Is the disease terminal?
• Can I die of this?
• How can medicine help? Do they offer any
Guarantees?
TRUST IS CRITICAL
“If I think I cannot help anymore or if I feel
you are dying, I will be the one to tell you
its time.”

33. Conclusion
 Words have consequences
 Speak plainly but clearly
 Metaphors can both help and confuse
 Think before you speak (my mom‘s
advice)
 Acknowledge concerns, fears
 Address the worse case scenario
 But do not trivialize the experience

34. Cancer is scary

35. But we can help make it
less so
ddizon@partners.org