Communicating Cancer: Hope and Truth

Don S. DizonMassachusetts General Hospital

Harvard Medical School

DisclosureDeputy Editor

Oncology and Palliative CareUpToDate, Inc.

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

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

Epidemiology of Cancer

Nearly 2 million cases each year

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.

There are over 14 million cancer survivors in the US alone

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 positive, especially after diagnosisScreening = Early Detection ≠

Prevention ≠ Cure

http://connection.asco.org/Commentary/Article/id/3368/On-Cancer-Prevention-Risk-Reduction-and-Cure.aspx

“Early detection [of breast cancer] is not the answer. Finding and treating all stage 0 breast cancer will not prevent all breast cancer deaths.”

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”]

“War on Cancer”

War = Battles to be won and lost Patients = Soldiers? Doctors = Generals? Mammograms = Guards? Chemotherapy = Weapons?

Death = Defeat?

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”

“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”

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/

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-to-breast-cancer.html

Minimizing side effects doesn’t help

“You’ll look just fine even without hair” Hair loss is a traumatic experience

in over 50% of women undergoing chemotherapy

Trivializing the effect is detrimental

Rarely, patients may experience 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.

“It’s devastating… with no hair there is no going back

to normal. C MacGregor, The Globe and Mail, Mar 16,

2011

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?

How can we do better?

Oncology is an extreme model for medicine

Unpredictable disease Dire diagnosis No guarantees

• Physicians and their patients experience:AnxietyUncertaintyDistress

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

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

May not be what “he” hears

• Biology/Science:• This is a bad tumor• Oh my god- Im going to 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

oncologist

Bottom Line

• Patients want information

• Patients do NOT want to lose hope

So engage cognitively

AND engage affectively

How can we do better?

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.

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

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 timeKI Pollack, et al. J Clin Oncol 2007; 25:5748-5752.

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.

Regarding treatment

1.Plain language2.Use frequencies rather than

percentages3.Explain BOTH benefits and

risks.

Benefits and Risks

Make sure to define “benefits” Use absolute rather than relative

risks Use graphics to explain statistics

Risks are importantTogether Will inform preferences based on one’s valuesMedX: Evidence based guidelines are not mandates.

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:

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:

Praise is positive

Use the power of positive reinforcementNot meaningless positive feelingAppreciation for the work of being a patient

- work of understanding- thoughtful decision making- consideration for others

Presented by:

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.”

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

Cancer is scary

But we can help make it less so

ddizon@partners.org