Part B: Section B.2

1PART B. Communicating with Families about Severe and Terminal Illness in Their Children

WHAT TO DO WITH “BAD NEWS”

Learning Objectives

2.1 Use skill in sharing bad news, including disclosure of a

life altering diagnosis, death of a patient, and occurrence of

a medical error; specifically:

a. Answer the question “Am I going to die?” posed by a 4, 8

and 15 year old

b. Respond when a parent starts to cry in the middle of a

conversation

c. Respond effectively when a parent exhibits anger

d. Be able to state, in under a minute, that a patient received

a drug in error

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 2

Learning Objectives continued

2.2. Skillfully lead a discussion of end of life issues and

goals of care (e.g., do not resuscitate measures) with a

family whose child is severely or terminally ill.

2.3. Listen generously to the grief of patients and families.

2.4. Counsel parents about how to identify a child/teen who

is experiencing complicated grief.

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 3

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 4

What is bad news?

Any information likely to drastically and negatively alter the

patient’s view of his or her future.

- Robert Buckman

What bad news have you

delivered?

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 5

Examples of bad news in pediatrics

o Infant born with a deformity not known prenatally

o Child given an incorrect medication dose

o Child with clinical findings concerning for cancer

o Injured child brought to the ED who dies

o Teen who is unintentionally pregnant

o A delayed discharge or surgery

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 6

What is the scariest part of delivering

bad news?

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 7

What makes bad news so bad?

o Fear of emotional response

o Sadness

o Helplessness

o Fear of blame

o Fear of death

o Lack of training

o Wanting to protect the child and family

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 8

Why learn to do it well?

o You will do it, more often than you realize.

o Powerful impact on how patients and families cope.

o It is rewarding when done well (and stressful when

it is not).

o It is satisfying when done well (and satisfaction can

minimize burnout).

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 9

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 10

Activity

Reflect on the essay “Critical Moments – Doctors and

Patients” NEJM 2011; 365:1270-1.

Do it well—not perfectly

o Expertise in sharing bad news is not defined as doing it

perfectly… rather it is getting it “right” most of the time

o Requires:

o Communication skills

o Being comfortable managing emotions

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 11

The role of self-awareness

and mindful practice in sharing bad news

o Self-awareness can assist practitioners in becoming

more attentive to the presence of stress

o Increased mindfulness is correlated with reduced

burnout and total mood disturbance in physicians

o Patient-centered qualities are correlated with increased

mindfulness (Krasner, 2009)

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 12

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 13

Communication

“Words are, in my not-so-humble opinion, our most

inexhaustible source of magic; capable of both

inflicting injury, and remedying it.”

- Albus DumbledoreHarry Potter and the Deathly Hallows, Part B

Basics

o How to share bad news:

o SPIKES

o Ask – Tell – Ask

o Handling emotions:

o NURSE

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 14

Spikes

o Set up (staging)

o Perception

o Invitation (“warning shot”)

o Knowledge

o Empathy

o Summary and strategy

“Communication Skills in Clinical Practice Part 4”

http://www.youtube.com/watch?v=ftgNapAfV6Q

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 15

Back et al. CA Cancer J Clin. 2005; 55:164-177

Set up and Staging

o Arrange for privacy

o Manage interruptions (e.g. pager, phone)

o Review the chart; clarify medical facts (for yourself)

o Involve others (e.g. other family members, nursing staff)

o Sit down (choose seats wisely)

o Introduce everyone

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 16

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 17

Which feels better?

Impact of Body Language

Perception

o Always get information before you give information:

o “What have the doctors told you…”

o “What is your understanding of…”

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 18

Invitation

o Ask how the patient / family likes to receive information

(i.e. the “big picture” or details)

o Ask if anyone else should be present

o Give a warning shot:

o "Unfortunately the news is not what we had hoped for..." or

o "I am sorry but I have some information which may be

hard to hear..."

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 19

Knowledge

o AVOID JARGON!

o “Doctors sometimes use words that not everyone understands.

Please stop me if I’m doing this.”

o Avoid euphemisms

o Give information in small pieces

o Check understanding frequently

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 20

Empathy and Emotion

o Let them know you have connected with their emotions

o Stop talking

o Observe the emotion

o Identify the emotion

o Explore the reason for the emotion

o (Use the NURSE mnemonic coming up)

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 21

Summary and Strategy

o Check overall understanding

o Recap goals

o Discuss the plan

o Probe for questions

o Document the discussion

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 22

Basics

o How to share bad news:

o SPIKES

o Ask – Tell – Ask

o Handling emotions:

o NURSE

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 23

Ask – Tell – Ask

o Ask the patient / parent to describe their current

understanding of the issue

o Tell the patient / parent in straightforward language what

the “bad news” is about

o Ask the patient / parent to describe the information back

to you

o Ask what question they have, points they need clarified

o Ask what it means to them

o Ask how they may share this news with others

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 24

Back et al. CA Cancer J Clin. 2005; 55:164-177

Sources of conflict

o Past experience of both you and the patient / parent

o Balance of truth-telling while maintaining hope

o Physician wants to be candid, but wants to avoid hurting the

patient / parent

o Patient / Parent wants to hear the truth yet may be resistant

to the content

o Cultural differences may mean differences in expected

communication patterns

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 25

Anticipate reactions

o Be prepared for parental reactions, as well as your own

o Anticipate expressions of anger, sadness, guilt, relief

o Utilize NURSE mnemonic

o Never judge a reaction, nor assume you know why they

are reacting a certain way

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 26

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 27

NURSE Mnemonic

N Name I wonder if you are feeling angry.

I see that you are frustrated.

It seems like you are down today.

U Understan

d

It is hard to imagine what you are going

through.

This is a lot to be dealing with.

R Respect I see how strongly you’ve been advocating for

her.

You are good, loving parents.

S Support I want you to know that I am here for you.

We are available for you as questions come

up.

E Explore Tell me more about what you are thinking.

How are you doing today?

Back et al. CA Cancer J Clin. 2005; 55:164-177

Tears

o Tears are common when hearing bad news

o Have tissues available

o Demonstrates you know this is emotional

o Gives the person ‘permission’ to cry

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 28

Anger

o Look for the source of anger

o A majority of anger stems from fear

o Other sources: genuine insult; personality

o Recognize the direction of the anger

o Is this internal anger or guilt?

o Is it external – toward staff, the hospital, God

o Engage, but avoid enmeshment with the emotion

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 29

Wang-Cheng. EPERC Fast Fact #59

Putting it together

o Here is how one pediatric palliative care physician

frames the issues we’ve just talked about:

http://www.youtube.com/watch?v=KBrmMW9c8_g

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 30

After the bad news disclosure

o Encourage parents to spend time with their child

o Determine how to disclose to the child*

o Offer to call other family members or supports

o Be available for questions

o Arrange a plan for follow-up

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 31

* See Part A: Understanding Grief and Loss in Children

Misguided objections to disclosure

to the pediatric patient

o Fear of inducing anxiety

o Perception that children cannot comprehend the

whole truth

o Perception that some children do not wish to know

the truth

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 32

Benefits of disclosure to the pediatric patient

o Decreases isolation and feelings of abandonment

o Creates more control and less anxiety

o Enhances long-term emotional and social adjustment

o Allows for better participation in decisions

o Keeps kids from being deprived of the opportunity to

make their deaths meaningful

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 33

Kushnick HL. Virtual Mentor 2010;12:573-577

Disclosure to the pediatric patient

o Parents prefer to speak with the providers first

o Make a plan to disclose

o Young Pediatrics 2011

o Autonomy without the exclusion of parents

o Respect for the role of the parent

o An active role in end of life decision making

o “Straight talk” about diagnosis, treatment, prognosis

o Planned follow-up and ongoing discussion

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 34

Pointers for discussing disclosure

o Disclosure is a process

o Establish a culture of openness

o Partner with parents to find hope & solutions

o Inform parents that you will not lie

o Discuss benefits & harms of disclosure

o Engage in a dialogue about the “process”

o Explore family fears about disclosure

o Involve team members & family supporters

o Explore what the child already knows

o Employ nonverbal means as needed

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 35

Friebert S. Virtual Mentor.

2010;12:522-529

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 36

Tell the children…

Because children know when they are dying and can sense

the extraordinary stress of their parents and doctors when

death is imminent, they may feel tremendous isolation if they

are not given permission to talk openly about their illness

and impending death.

Hilden JM et al. J Clin Onc 2000; 18(17): 3193-5

6 E’s of communication with children

who are dying

o Establish agreement with parents and children

concerning open communication

o Engage the child at an opportune time

o Explore what the child already knows and wants to

know

o Explain medical information according to the child’s age

and needs

o Empathize with the child’s emotional reaction

o Encourage by reassuring him/her that you will listen and

be supportive

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 37

Beale EA, Baile WF, Aaron J. J Clin Onc. 2005; 23:3629-3631

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 38

Activity

Respond to the essay “Should parents speak with a dying

child about impending death?” in NEJM 2004; 351:1251-1253

Respond to the essay “At the end of a child’s life, parents

at a loss for words” ABC News March 5, 2012

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 39

Activity

Answer the question “Am I going to die?” posed by a 4, 8,

and 15 year old

http://www.bcchildrens.ca/KidsTeensFam/A-ZPamphlets/G-

HPamphlets.htm#Griefandloss

A way to find out more… ask about

goals of care

o What is your understanding of the illness?

o Given that, what are your hopes? What else?

o What concerns you most about his illness? What

concerns you most right now?

o What’s most important for your child?

o What is the best and the worst that might happen?

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 40

How does uncertainty impact

bad news?

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 41

Uncertainty

o Acknowledge uncertainty

o This illness can act in different ways

o Admit what you don’t know

o Medicine only knows so much at this time

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 42

Some “dos”

o Be humble, yet competent

o Give honest information

o Acknowledge uncertainty

o Include children in developmentally-appropriate discussions when available *

o Balance emotions and cognitive needs

o Negotiate treatment decisions based on goals of care and family values

o Practice your communication skills

* See Part A: Understanding Grief and Loss in Children

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 43

Some “don’ts”

o Give conflicting or vague information

o Use euphemisms

o Speak directly to a child about their illness without permission

o Present treatment options as a choice between life or death

o Give unrealistic hopes about treatments (including resuscitation)

o Assume that not wanting to die is the same as “wanting everything done”

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 44

Putting it into practice

with role play*

o Guided reflective patient narratives

o Simulated patients

* See Sections B3 and B4

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 45

References

PART B. Communicating with Families about Severe and Terminal Illness in Their Children 46

• Back AL, Arnold RM, Baile WF, Tulsky JA, Fryer-Edwards K. Approaching difficult

communication tasks in oncology. CA Cancer J Clin. 2005; 55:164-177

• Beale EA, Baile WF, Aaron J. Silence is not golden: Communicating with children dying from

cancer. J Clin Onc. 2005; 23:3629-3631

• Friebert S. Nondisclosure and emerging autonomy in a terminally ill teenager. Virtual Mentor.

2010;12:522-529

• Hilden JM, Watterson J, Chrastek J. Tell the children. J Clin Onc. 2000; 18:3193-3195

• Kushnick HL. Trusting them with the truth - disclosure and the good death for children with

terminal illness. Virtual Mentor 2010;12:573-577

• Wang-Cheng R. Dealing with anger. EPERC Fast Fact #59. 2008

• Young B, et al. Parents’ experiences of their children's presence in discussions with

physicians about leukemia. Pediatrics 2011;127;e1230-e1238