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Communicating Cancer:
Hope and Truth
Don S. Dizon
Massachusetts General Hospital
Harvard Medical School
Disclosure
Deputy Editor
Oncology and Palliative Care
UpToDate, Inc.
Objectives
 To better understand how the language of
oncology often implies dual meanings in
the discussion of risk, diag...
Outline
 Perspective: Cancer epidemiology
 Importance: How communication impacts
for women facing a diagnosis of cancer ...
Epidemiology of Cancer
 Nearly 2 million
cases each
year

There are over 14 million cancer
survivors in the US alone

 A...
Why the ―how‖ of
communication matters…

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

http://connection.asco.org/Commentary/Article/ID/3219/The-Power-of-Words.aspx
―Screening saves lives‖
 Common mantra- but define your audience
 Perspectives on this ―truism‖ are not
universally posi...
After diagnosis:
The ―War on Cancer‖
 John Donne (1624): Illness is a ―cannon
shot‖; a ―siege [that] blows up the heart‖
...
―War on Cancer‖
 War = Battles to be won and lost
 Patients = Soldiers?
 Doctors = Generals?
 Mammograms = Guards?
 C...
The language of blame -―Lifestyle choices raise your risk‖
SJ: I don't understand how
this happened to me.
MD: Some studie...
―Lifestyle choices‖
SJ: Give me my chart. I'm
going to find some woman
doctor, some hot woman
doctor who understands
what ...
When words are meant to be
reassuring…
 ―Well, ―At least you caught it early‖
 Consider what this might mean:
 Early st...
Treatment as a ―benefit‖-Breast reconstruction
 Type of breast surgery is a difficult decision
for patients with breast c...
Minimizing side effects
doesn‘t help
―You‘ll look just fine even without hair‖
―It‘s devastating… experiencehair
Hair los...
After Treatment Language
―Go and live your life.‖
 End of treatment = Fear of Recurrence
 Time of increased anxiety
 Ex...
How can we do better?
 Oncology is an extreme model for medicine
 Unpredictable disease
 Dire diagnosis
 No guarantees...
Facts about most
cancers
 Not everyone is curable

 Prognostic factors widely known, vary by
cancer
 For newly diagnose...
What we say…
• Biology/Science
• Cancer is a heterogenous disease
• Molecular profiles are showing it‘s really not
one dis...
May not be what ―he‖ hears
• Biology/Science:
• This is a bad tumor
• Oh my god- Im going to oncologist
die
• Natural Hist...
Bottom Line
• Patients want information
So engage cognitively

• Patients do NOT want to lose hope
AND engage affectively
How can we do better?
A Communication Toolkit
Acknowledge emotion
During initial visits:
 Plain language
 Don‘t assume prior knowledge
 Addre...
A Communication Toolkit
Approaching Decisions
 Outline options (benefits and risks)
 Build on values and preferences

 ...
Acknowledge emotions
 Studies show it doesn‘t happen often enough:
 Duke study: 398 oncology visits (51
oncologists)

 ...
Respond to Emotion- It
matters
Clayton: Patients want honesty, and
accuracy, provided empathically and with
understanding
...
Regarding treatment
1.Plain language
2.Use frequencies rather than
percentages
3.Explain BOTH benefits and
risks.
Benefits and Risks
Make sure to define ―benefits‖
 Use absolute rather than relative risks
 Use graphics to explain stat...
Offer to discuss the
future
―How much have you been worrying about
the future?‖
―Sometimes people are a bit hesitant to as...
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 cl...
Praise is positive
Use the power of positive reinforcement
Not meaningless positive feeling
Appreciation for the work of b...
In Summary
• Address the elephant in the room first
• Is the disease terminal?
• Can I die of this?
• How can medicine hel...
Conclusion
 Words have consequences
 Speak plainly but clearly
 Metaphors can both help and confuse
 Think before you ...
Cancer is scary
But we can help make it
less so

ddizon@partners.org
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Communicating hope and truth: A presentation for health care professionals

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Dr. Don S. Dizon, gynecologic oncologist at Massachusetts General Hospital Cancer Center, discusses the lessons he's learned while trying to communicate in an honest and hopeful way with patients facing a difficult diagnosis. This was presented as a webinar hosted by SHARE. If you'd like to view the complete webinar, go to www.sharecancersupport.org/dizon

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  • Butow, et al: Outpatient oncology clinic in AustraliaClinician communication analyzed for responses to information and emotion cuesN= 298 patients seeing one of 5 medical and 4 radiation oncologistsDoctors more likely to respond to informational cues, rather than on emotional cues
  • Transcript of "Communicating hope and truth: A presentation for health care professionals"

    1. 1. Communicating Cancer: Hope and Truth Don S. Dizon Massachusetts General Hospital Harvard Medical School
    2. 2. Disclosure Deputy Editor Oncology and Palliative Care UpToDate, Inc.
    3. 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. 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. 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. 6. Why the ―how‖ of communication matters… http://connection.asco.org/Commentary/Article/ID/3219/The-Power-of-Words.aspx
    7. 7. Especially to our patients http://connection.asco.org/Commentary/Article/ID/3219/The-Power-of-Words.aspx
    8. 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. 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. 10. ―War on Cancer‖  War = Battles to be won and lost  Patients = Soldiers?  Doctors = Generals?  Mammograms = Guards?  Chemotherapy = Weapons?  Death = Defeat?
    11. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 21. Bottom Line • Patients want information So engage cognitively • Patients do NOT want to lose hope AND engage affectively
    22. 22. How can we do better?
    23. 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. 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. 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. 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. 27. Regarding treatment 1.Plain language 2.Use frequencies rather than percentages 3.Explain BOTH benefits and risks.
    28. 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. 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. 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. 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. 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. 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. 34. Cancer is scary
    35. 35. But we can help make it less so ddizon@partners.org
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