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Sharing Life-Altering Information - Pediatric/Neonatal - Inpatient/Ambulatory/Emergency Department

Sharing Life-Altering Information - Pediatric/Neonatal - Inpatient/Ambulatory/Emergency Department - Clinical Hub, UW Health Clinical Tool Search, UW Health Clinical Tool Search, Clinical Practice Guidelines, Patient-Centered Care, Related


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Sharing Life-Altering Information –
Pediatric/Neonatal –
Inpatient/Ambulatory/Emergency Department
Clinical Practice Guideline
Note: Active Table of Contents – Click each header below to jump to the section of interest
Table of Contents
INTRODUCTION ............................................................................................................. 3
SCOPE ............................................................................................................................ 3
DEFINITIONS ................................................................................................................. 4
RECOMMENDATIONS ................................................................................................... 4
Setting up the meeting ............................................................................................................ 5
Assessing the family’s perception and understanding ............................................................. 7
Involve the family in the discussion ......................................................................................... 8
Share knowledge and information with the family ................................................................... 9
Address the family’s emotions ................................................................................................ 9
Summarize, strategize, and self-reflect at the conclusion of, and after, the encounter ...........12
METHODOLOGY .......................................................................................................... 14
COLLATERAL TOOLS & RESOURCES ..................................................................... 16
APPENDIX A. POCKET CARD .................................................................................... 17
REFERENCES .............................................................................................................. 18
Copyright © 2017 University of Wisconsin Hospitals and Clinics Authority
Contact: Lee Vermeulen, CCKM@uwhealth.org Last Revised: 10/2017CCKM@uwhealth.org

2
Content Expert(s):
Name: Margo Hoover-Regan, MD – Pediatric Hematology/Oncology
Phone Number: (608) 263-6200
Email Address: mhooverregan@pediatrics.wisc.edu
Contact for Changes:
Center for Clinical Knowledge Management (CCKM)
Email Address: CCKM@uwhealth.org
Workgroup Members:
Lydia Wraight, MD – Neonatology
Sharon Frierdich, MS, RN, BC-PNP – AFCH Peds Specialty Clinics
Joyce Kilgore-Carlin, CAPSW – Nursing- Coordinated Care
Julie Slattery, NP – Pediatrics Hematology/Oncology
Karilyn Stampfli, NP – Nursing Administration - AFCH
Linda Sparks – Patient Relations Director
Reviewer(s):
Josh Ross, MD - Pediatric Emergency Medicine
Michael Wilhelm, MD- Pediatric ICU
Scott Hagen, MD – Pediatric ICU
Jonathan Kohler, MD - Pediatric Surgery
Mary Ehlenbach, MD – Pediatric Hospitalist/Complex Care Program
Susan Hubanks, NP – Neurological Surgery – General
Meredith Schultz, MD – Pediatric Neurology
Patricia Staats, MD – General Pediatric and Adolescent Medicine
Jan Haedt, BS, RN, CPHRM – Risk Management
Robert Ebbe, JD, CPHRM – UWSMPH Risk Management
Joseph Hanes, JD – Corporate Counsel
Committee Approval(s):
Clinical Knowledge Management (CKM) Council (10/26/2017)
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Contact: Lee Vermeulen, CCKM@uwhealth.org Last Revised: 10/2017CCKM@uwhealth.org

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Introduction
“Life-altering information” is information a patient’s family might perceive as a significant change
in the health or treatment of their child. Pediatric care team members report insufficient training
in and comfort with sharing life-altering information.1-4 Sharing life-altering information can be
particularly stressful for care team members who are inexperienced in doing so skillfully.5,6
Patients and families confirm that health care team providers can be deficient in this skill.
Education and training are required to learn how to share life-altering information in a patient-
and family-centered, collaborative, culturally-sensitive, empathic, respectful and caring way.7-9
Skillfully sharing life-altering information can develop and enhance the therapeutic relationship
and the patient and family’s sense of well-being.3,7 This guideline addresses sharing life-altering
information (also known as “breaking bad news”) with pediatric patients and their families and
assists care team members in performing two-way, collaborative, patient- and family-centered
communication. This does not address the process of disclosure related to identified
medical errors or preventable adverse events.
Scope
Intended User(s): Physicians, Advanced Practice Providers, Registered Nurses, Social
Workers, Case Managers, Health Psychologists, and learners/trainees in all fields.
Objective(s):
ξ To improve patient and family-centered care by providing evidence-based recommendations
for actions taken by staff in disclosing and sharing a life-altering diagnosis or change in
condition or prognosis
ξ To provide pediatric care team members with a toolkit of skills for sharing life-altering
information, in a manner that mitigates some of the emotional stress experienced by the
patient or family, thereby increasing understanding of clinical information.
ξ To encourage use of a multidisciplinary team approach to sharing information, and provide
awareness of and strategies to address the emotional responses by the patient and family.
Target Population: All neonatal and pediatric patients cared for in the emergency, inpatient,
and/or ambulatory setting (including primary and specialty care).
Clinical Questions Considered:
1. What are the foundational steps or tools to use in order to effectively and empathically
communicate and ensure patient/family understanding among patients and/or families
receiving “bad news” or difficult prognoses?
2. What approach to and content of the conversation are likely to encourage collaboration with
the patient or family and make them feel as an important member of the care team?
3. What methods are proven to be most effective and preferred to address family emotions and
responses to bad news?
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Contact: Lee Vermeulen, CCKM@uwhealth.org Last Revised: 10/2017CCKM@uwhealth.org

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Definitions
1. “Life-altering information” is information the patient and/or family might perceive as a
significant change in the health, treatment, or quality of life of the patient.7 Examples of this
can span a spectrum of diagnoses, conditions, or disability (e.g., a cancer diagnosis,
broken leg, need to be on anticoagulation therapy, or diagnosis of a lifelong disability or
chronic condition). This is not necessarily a life-threatening situation. In the literature,
alternatives to “life-altering information” include “breaking bad news” or “delivering, giving
and communicating” bad news. These alternatives imply a one-way flow of information,
limiting the emphasis on patient- and family-centered care and subtly suggest a paternalistic
approach.10 The concept of “bad news” is problematic because it implies a value judgment
by the pediatric care team member, who is likely to be unaware (or minimally aware) of the
patient’s or family’s interpretation of the information in the context of their lives.11 Families
can react negatively to being told that a diagnosis is not, relatively speaking, “bad” news, as
that is theirs alone to judge.12 Children and families are regarded as experts in regard to
their own experience.7
2. “Pediatric care team members” are any clinical personnel in the hospital or ambulatory
setting, who participate in the care of pediatric patients. Examples include but are not limited
to physicians, advanced practice providers, nurses, social workers, health psychologists,
therapists, and trainees in all of these fields.
3. “Encounters” are considered any interaction between one or more members of the
pediatric care team and a pediatric patient/family, in which life-altering information will be
discussed.
4. “SPIKES” is an acronym for features of breaking bad news in adult oncology patients,
originally representing “Setting, Perception, Invitation, Knowledge, Emotion,
Summary/Strategy”.5 The “SPIKES” recommendations have been modified by UW Health
for the pediatric setting which demonstrated significant improvements in the self-efficacy of
pediatric care team members.7
Recommendations
The literature repeatedly suggests that care team member education and confidence in sharing
life-altering information discussions leads to improved interactions with patients.3,13-15 Therefore,
provision of training in two-way, collaborative, patient- and family-centered communication is
recommended for all staff on the pediatric care team.7,16 (UW Health Low quality evidence, strong
recommendation)
The original SPIKES recommendations and model have been validated in self-efficacy training
settings, and was revised for the pediatric population.5,7 The recommendations outlined in this
document are meant to guide preparation for, conduct of, and follow-up from encounters in
which life-altering information is shared with pediatric patients and their families. It is best for
team members to be familiar with and review all of these recommendations prior to planning an
encounter; employing features of the guideline as deemed appropriate for the clinical situation.
Use of these foundational recommendations should help to avoid lasting emotional injury for the
family arising from suboptimal sharing of life-altering information.2,7,17
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Setting up the meeting
The family should be informed as soon as possible after a diagnosis/change in their child’s
condition has been identified. (UW Health Very low quality evidence, strong recommendation) Staff
should take care to avoid inadvertently sharing a diagnosis or condition change by being
overheard discussing the patient with another care team member. Investing the time necessary
to prepare for an encounter between staff and the patient/family will yield benefits to and
efficiencies in the therapeutic environment and relationship, and can build a more productive,
longer term relationship.16 Prior to the meeting, health care team members should reflect on the
seriousness of the life-altering information they will share with the patient and family. UW Health
Very low quality evidence, weak/conditional recommendation)
Expectations of what a patient’s family can expect when information needs to be shared related
to the patient’s care should be set by the members of the care team. (UW Health Low quality
evidence, strong recommendation) This can be done when orienting the family to the unit, clinic, or
after obtaining a lab or scan. The type of expectations which should be established include5:
ξ Where the information may be shared.
ξ Time frame when information may be available.
ξ Who the family may like to have available for support.
ξ Whether the family would like a note keeper, or tape recording to document the information
(for themselves and/or others).18
ξ Whether arrangements need to be made for both parents and/or other appropriate family
members to be informed together (if appropriate to the family’s situation), or if it is preferred
that individuals are told the information separately.
ξ Whether the patient should be included or excluded from the meeting, as well as options for
coverage (other family, Child Life, etc.) if child is not attending.19-22 It is important to reassure
the family that staff will contact them during the meeting if a need arises.19-21 (UW Health Low
quality evidence, weak/conditional recommendation)
A private location (e.g., away from the child, interview room with door closed, comfortable
seating, tissues, water, paper/pen for parents or their designated note taker ) should be
reserved or provided, and the meeting should be of a length that ensures adequate time for full
disclosure, subsequent discussion, and addressing reactions.5,18,22,23 (UW Health Very low quality
evidence, strong recommendation) Whenever possible, staff should consider securing coverage of
other duties from a colleague during the meeting, and should be prepared to turn off their
phones and/or pagers in order to minimize interruptions during the meeting.5,19-21
The length and timing of difficult conversations can be unique challenges for the emergency
department and intensive care settings in particular, as decisions often need to be made quickly
and the environment can be filled with many interruptions and distractions.24,25 While every effort
to adhere to the basic principles outlined in this guideline should be made by all staff, slight
modifications may be considered in the emergency and intensive care settings to overcome
their unique challenges. For example, the length of the discussion may need to be shortened
due to the urgency and timing for decisions which need to be made following discussion of the
life-altering information. In these instances, it is recommended to clearly communicate the
reasons for the urgency or brevity to the patient/family. (UW Health Very low quality evidence,
weak/conditional recommendation)
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Deciding Whether to Include the Patient
Over time, the historical pendulum for involving a pediatric patient in a prognostic discussion
has swung back and forth from “don’t tell” to “always tell”. Current literature suggests four key
considerations (role of hope and prognosis, patient factors, family dynamics, and staff training or
support) when deciding whether a patient should be present.26 The decision of whether to
involve a patient in the discussion of life-altering information should be made on an individual
basis following consideration of the factors outlined in Table 1 and discussion with the
parent/family member.26 (UW Health Very low quality evidence, weak/conditional recommendation)
Health care team members should remain sensitive to the family’s emotions and preferences.
Some family members have expressed a preference to meet with the health care team privately
(i.e., without their child present) in order to feel they are allowed to more fully express their
emotions or ask questions.
Table 1. Considerations for Prognostic Disclosure to Children26
Considerations
Hope and Prognosis
o
o Role of hope in discussion
o Therapeutic misconception and misestimation with focus on clinical trials
o Distinction between realistic and unrealistic expectations of patients and parents
Individual Patient Considerations
o Unique needs of individual patient
o Patient’s age, developmental level, and illness experience
o Awareness of patient’s communication cues
o Patient’s communication preferences (e.g., receive information from parents vs. medical team;
preference for written materials, pictures, videos, etc.)
Family Considerations
o Cultural beliefs of family
o Communication style of family (how decisions are generally made)
o Challenge of balancing parent’s desires and patient’s communication needs
o Children and parents may change over time
Clinician Considerations
o Manner of telling (who tells, what they say, how it is shared, etc.)
o Considering the purpose of telling
o Clinician’s potential lack of training and comfort with difficult discussions
o Importance of support and self-care for clinicians who must repeatedly share difficult news with
children
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Recommended Health Care Team Process to Prepare for the Family Meeting
(UW Health Low quality evidence, weak/conditional recommendation)
1. Identify the team members who will be involved in the family meeting.19-21
a. Team members who are participating should have an ongoing relationship with
the patient/family (e.g., MD most responsible for management decisions, primary
nurse/APP, psychosocial representative, spiritual care representative).19-21
b. Involve a trained interpreter if language differences exist.19-21,25
c. Consulting specialist(s) may wish to participate to share their information.
2. Every attempt should be made to limit the number of team members participating. A
room full of people, some of whom the patient and/or family members may have never
met, can be very intimidating.
3. Select the meeting “leader” or “facilitator” who has or will have a meaningful relationship
going forward with patient/family.22
4. Inquire about and/or review pertinent family information that may impact the family’s
response (e.g., family dynamics, culture, race, religious beliefs and socio-economic
background).22,26
5. Develop and communicate the plan for the family meeting with the healthcare team.
a. Review the clinical findings, available treatment options, and ways in which
support will be offered.19-21
b. Review how team members might respond to family members’ emotional
reactions or difficult questions.
c. Remind team members that each person on the team has a responsibility to
apply the recommendations outlined in this guideline to the best of their ability
and applicability to the individual encounter.
d. Acknowledge that there may need to be more than one meeting to allow for
enough time to communicate the necessary information and provide support.
Assessing the family’s perception and understanding
During the meeting, health care team members should work to avoid or minimize physical
barriers between themselves and the family (and patient if present). It is recommended to create
an inviting and comfortable physical environment that promotes sharing, comfort, conversation,
and collaboration.5 (UW Health Very low quality evidence, strong recommendation) This can be
achieved by making sure there is adequate seating, encouraging that all participants are seated,
creating and maintaining connection with the family via eye contact, touch on the arm, or hand
(if appropriate), and ensuring that the family knows the names and roles of the medical
personnel and other team members present.5,19-21,24
Before the meeting “leader or facilitator” begins relaying information to the patient/family, staff
should first ASK questions to assess the family members’ current knowledge and
understanding.5,16,27,28 (UW Health Very low quality evidence, weak/conditional recommendation)
Explore the patient/family’s knowledge, expectations, and hopes as this will help members of
the pediatric care team understand the family’s perspective and provide a starting point for
discussion.27,29 Use of open-ended questions is recommended to learn what the patient/family
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perceives the medical situation to be and the seriousness of the situation. (UW Health Very low
quality evidence, weak/conditional recommendation)
Suggested Open-ended Questions to Assess Family’s Perceptions & Knowledge7,29
ξ “What have you been told about your child’s medical situation so far?”
ξ “What is your understanding of the reasons we did (particular tests)?”
Suggested Open-ended Question to Assess Patient’s Perception & Knowledge26
ξ “Tell me what you know about what is making you sick”
When any of the viewpoints or wishes of any involved parties (e.g., family members, patient,
healthcare team) conflict, consider the use of “shuttle diplomacy” as a method for reconciling the
differences.26,30 (UW Health Low quality evidence, weak/conditional recommendation) This diplomatic
approach allows all parties to have their voice heard and provides an avenue to deeper
understanding of parental beliefs, understanding, and fears.26 Staff should correct
misinformation and determine if the patient/family is engaging in denial or has unrealistic
expectations of treatment.5,29 (UW Health Very low quality evidence, weak/conditional
recommendation) It is important to remember that denial is often an adaptive coping mechanism.
Once the patient/family’s perceptions and level of knowledge has been established, the ensuing
information provided during the meeting should be tailored to what the patient/family
understands, starting at the level of comprehension and vocabulary or health literacy of the
family.18,28,29 (UW Health Low quality evidence, weak/conditional recommendation)
Involve the family in the discussion
It is recommended to invite the family and/or patient to participate in the discussion.7,25,29 (UW
Health Low quality evidence, strong recommendation) This can be done by asking the family to let
team members know if they do not understand some information, and encouraging them to ask
questions and express any concerns.3,6,7,10,11,29,31 If present during the discussion, reassurance
to the patient that he or she is safe to ask any question and, when appropriate, providing
opportunities for the patient to have discussions without parents present is another strategy to
encourage participation.26 It is important to recognize that younger children often communicate
nonverbally through play, and this may be the most comfortable way for them to interact.
Several therapeutic tools exist which can be used to help assess what the child understands
and open conversations (e.g., My Wishes (pediatrics)32, Voicing My Choices (adolescents)33,
Shop Talk34, and Hear My Voice35).26 Discussion and confirmation of the meeting agenda can
help members prepare relevant questions.3,7,10,11,29,31 For example: “We plan to cover what’s
happening with your child, what we are planning to do about it, and to answer any questions you
may have. Is there additional information you would like us to cover?” Families can also be
informed that there will be an opportunity to meet again, if needed.
Health care team members should interject if the patient or family seems not to understand or
appears confused during the meeting. It is also important for staff to be sensitive to the family’s
dynamics, culture, race, religious beliefs and socio-economic background.3,7,10,11,16,18,26,31 (UW
Health Low quality evidence, strong recommendation)
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9
Share knowledge and information with the family
To lessen their shock, staff should warn the family members that bad news is coming.5 (UW
Health Low quality evidence, weak/conditional recommendation) This is commonly referred to as
providing a “warning shot.”2,36-38
When discussing the life-altering information and any relevant clinical details, it is recommended
that staff perform the following communication techniques and styles (UW Health Low quality
evidence, weak/conditional recommendation):
ξ Repeat key information as needed. Always reinforce the big picture. Connect the information
you’re providing back to the information the family already has, and help the family
understand how the new information makes a difference in the life of the patient and
family.2,6,36-38
ξ Pace the information and periodically check the family’s understanding.2,24,36-38 Encourage
and allow time for family reflection, sharing reactions, and clarification/questions. Avoid the
pitfall of talking for the sake of overcoming your own discomfort.
ξ Don’t lecture. Speak honestly but avoid excessive bluntness.16,24 Speak slowly and be aware
of your tone of voice.24 Avoid the tendency to lapse into “physician speak”; instead use non-
technical words that respect the health literacy of the patient/family (i.e., simple language
without euphemisms, technical terms, or clinical jargon).2,6,16,36-39
ξ Avoid excessive prognostication.24 Some clinical scenarios may require staff to be honest
that the future can be unclear. It may be useful to provide a range on prognosis and leave
room for hope.7
ξ Emphasize positive findings when possible.7
ξ Encourage all team members to participate.
ξ To assist in the explanation, it may be helpful to use visual aids and test results such as
models, diagrams, lab results, X-rays, patient education handouts, etc.2,6,18,36-38
ξ Don’t feel like you have to have all the answers. If you do not have information, let the family
know you will get back to them with the information requested.
Address the family’s emotions
Building rapport with patients is essential to patient-centered care, however in settings such as
the emergency department, it can be challenging to establish as the pediatric health care team
members often do not have a long-term relationship with the patient.39 An evaluation of patient
and provider perceptions in a review demonstrated physicians are often more focused on
efficiency and practical aspects, such as medical tests and procedures, than empathizing with
patients when discussing bad news.39 In contrast, patients and their families participating in the
studies expected psychological comfort and reassurance.39 Combining empathic, exploratory
and validating statements is one of the most powerful ways to offer support and solidarity to
Suggested Precursors Disclosing the Life-Altering Information
ξ “I have some difficult news to share.”
ξ “I’m sorry to tell you that I’ve got some bad news to share with you.”
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families.8,16,40,41 It reduces the family’s isolation, expresses solidarity, and validates their
feelings/thoughts as being normal and expected.
During the entire encounter, it is important for staff to remember to respond to the family’s words
and feelings, and encourage opportunities for the family members to express their feelings. (UW
Health Low quality evidence, weak/conditional recommendation) When responding to a family
member’s emotions, staff should (UW Health Low quality evidence, weak/conditional
recommendation):
ξ Allow for silence, disbelief/denial, tears, other difficult moments and all expression of
emotions (including anger, shock, guilt and grief).27
ξ Determine if time is needed for further discussion after the encounter.
ξ Encourage parents and family members to be supportive of each other. Explain it is normal
for different individuals to respond differently.
ξ When the prognosis is poor, avoid using phrases like, “There is nothing more we can do for
your child.” The family may have important therapeutic goals such as palliative care, good
pain control, symptom relief, etc. that the care team can accomplish.5,16
ξ Be honest that the future can be unclear; avoid excessive prognostication.
ξ Avoid any indication of abandonment. Assure patient and family of continuing support.
Emphasize commitment to symptom control and quality of life for the patient.5
Recommended Responses to Address Family Emotion5,27,40,41
Empathic responses consist of observing for any emotion on the family member’s part.
ξ “I can see how upsetting this is for you.”
ξ “I can tell you weren’t expecting to hear this.”
ξ “I know this is not good news for you.”
ξ “I was hoping for a better result.”
ξ “This must be very difficult for you.”
ξ “This must be a parent’s worst nightmare.”
ξ “I imagine that your hearts are broken.”
Exploratory responses are questions that seek to clarify the thoughts and feelings expressed
by the family.
ξ “How do you mean?”
ξ “Tell me more about it.”
ξ “You said it frightened you?”
ξ “Could you tell me what you’re worried about?”
ξ “Now, you said you were concerned about your other children. Tell me more.”
Validating responses are verbal or physical responses that validate the expressed
emotions/reactions. Speech, body language, and touch can be used as appropriate to convey
empathy and personal support. Most families view a clinician’s show of emotion in a positive
light.
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Recommended Responses to Address Family Emotion5,27,40,41
ξ “I can understand how you felt that way.”
ξ “I guess anyone might have that same reaction.”
ξ “You were perfectly correct to think that way.”
ξ “Yes, your understanding of the reason for the tests is very good.”
ξ “It appears that you’ve thought things through very well.”
ξ “Maybe other parents have had similar experience.”
Note: Avoid statements such as “I know how you feel”. Avoid trying to equate your own
experiences to those of the family. Such attempts at empathy are often not welcome.
Hope can be an important coping strategy for families and a prerequisite for effective decision
making.31 Members of the healthcare team should balance hope with realism by framing hope in
terms of what is possible to accomplish and the mutual goals of patient/family and the health
care team.7,29,40 When possible, it is recommended to provide the family with a realistic sense of
and belief in opportunities such as new solutions, different options and choices, new ways of
reacting, and favorable future prospects.10,24,29,40 Specifically, staff should support a particular
hope or prepare the family for substitution of an unrealistic hope with a more realistic one. In
clinical scenarios where options for curative treatment do not exist, the discussion between the
family and health care team may shift to instead focus on hope for accomplishing important
therapeutic goals such as palliative care (e.g., pain control and symptom relief) for which
treatments do exist and that the care team can accomplish.5,16
Examples of Statements of Hope or Support7
ξ “There are always options.”
ξ “We will be here to support you.”
At any impasse or if uncertain about what a family member is communicating, feeling, or
expressing, care team members may ask an exploratory question before making an empathic
response.5 (UW Health Very low quality evidence, weak/conditional recommendation) Such a scenario
might involve the following statements/actions5:
Physician: “I’m sorry to say that the x-ray shows that there has been significant injury to
the brain. (Pause).
Parent: “I’ve been afraid of this” and cries.
Physician: Moves her chair closer and offers parent tissue and pauses. “I know that this
isn’t what you wanted to hear. I wish the news were better.”
The physician observed the parent crying, realized the parent was tearful because of the
bad news, and moved closer to the parent. She might have touched the parent’s arm or
hand, paused for her to gain composure, and then let the parent know she understood
why she was upset by reflecting her observation of the parent’s emotions.5
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Summarize, strategize, and self-reflect at the conclusion of, and after,
the encounter
Summarize
It is recommended to summarize important points from the encounter, re-state mutual goals,
and time line to family members. It is recommended to assure parents they will participate in
management decisions.7,10,40 (UW Health Low quality evidence, weak/conditional recommendation)
Sharing responsibility for decision-making with family is consistent with offering patient and
family-centered care and may also reduce a sense of failure on the part of the pediatric care
team members if treatment is not successful.5
Strategize
Staff should strategize and make future plans, including establishing a treatment plan. Patients
who have a clear plan for the future are less likely to feel anxious and uncertain.5 However,
before discussing a treatment plan, staff should consider asking the family if they are ready (at
that time) for such a discussion.5,10,18,29,40 (UW Health Low quality evidence, strong recommendation)
In instances where discussions and decisions need to occur more rapidly, such as in the
emergency or intensive care settings, it is important to clearly communicate the reasons for
having the discussion even when the family may not feel ready. (UW Health Very low quality
evidence, weak/conditional recommendation)
In discussing treatment options, staff should encourage discussion and make recommendations
for particular treatment based upon medical judgment.7,40 Family understanding of the treatment
plan should be verified (e.g., using “teach back” techniques) to prevent the natural tendency to
overestimate the efficacy or misunderstand the purpose of the treatment.7,10,29,40 (UW Health Low
quality evidence, strong recommendation)
Toward the end of the meeting, it is important to ensure an ongoing therapeutic relationship
between the health care team and the family. Staff should consider offering help or assistance
in sharing the information with others(e.g., other family members, siblings, or the child).7 It is
recommended to provide information about support services as appropriate, (e.g., social
workers, spiritual care, health psychology, support groups and community resources) as well as
any relevant patient education materials.7 Finally, staff may need to allow family privacy in the
room after meeting. (UW Health Very low quality evidence, weak/conditional recommendation).
Suggested Statements to Ensure an Ongoing Therapeutic Relationship
ξ “We’ll be meeting with you on a daily basis during your hospital stay to share more
information and respond to any questions or concerns that you may have.”
ξ “This is my contact information. Please contact me if you have further questions or
concerns.”
Documentation should be entered in the electronic medical to record the information shared with
the family to facilitate consistency of information provided by the health care team.7 (UW Health
Very low quality evidence, strong recommendation)
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Self-Reflection/De-briefing
Following the encounter, team members should seek opportunities to reflect, process, and
understand staff and healthcare team’s own emotions (e.g., a brief post-meeting discussion
between staff about what worked and what did not work, and goals and responsibilities for the
care plan).7,10,29,40 (UW Health Low quality evidence, weak/conditional recommendation) Psychosocial
representative(s) may consider making sure the encounter proceeded according to the
recommendations as applicable to the particular patient and family, and offering feedback to the
health care team on the strengths of or areas to improve during the interaction. Staff may also
consider seeking opportunities for personal reflection about how the family meeting has
impacted them individually and their practice.8 (UW Health Very low quality evidence,
weak/conditional recommendation)
Disclaimer
Clinical practice guidelines assist clinicians by providing a framework for the evaluation and
treatment of patients. This guideline outlines the preferred approach for most patients. It is not
intended to replace a clinician’s judgment or to establish a protocol for all patients. It is
understood that some patients will not fit the clinical condition contemplated by a guideline and
that a guideline will rarely establish the only appropriate approach to a problem.
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Methodology
Development Process
Each guideline is reviewed and updated a minimum of every 3 years. All guidelines are
developed using the guiding principles, standard processes, and styling outlined in the UW
Health Clinical Practice Guideline Resource Guide. This includes expectations for workgroup
composition and recruitment strategies, disclosure and management of conflict of interest for
participating workgroup members, literature review techniques, evidence grading resources,
required approval bodies, and suggestions for communication and implementation.
Methods Used to Collect the Evidence:
The following criteria were used by the guideline author(s) and workgroup members to conduct
electronic database searches in the collection of evidence for review.
Literature Sources:
ξ Electronic database search (e.g., PubMed)
ξ Hand-searching journals, external guidelines, and conference publications
Time Period: 2000 to 2017, with a focus on time since the last guideline review (2014-2017)
Search Terms: “bad news” “difficult news” “SPIKES” “professional-family relations” “patient-
centered care” “family participation” “prognosis” “surgical decisions” “intensive care” and
“communication”
Methods to Select the Evidence:
Search results were included for review by the workgroup if they were published in English and
evaluated care of neonatal and pediatric patients. Case studies, quality improvement studies,
and reviews were considered when they evaluated patient, family, or provider perceptions on
communicating difficult news; health literacy; described standards of patient-centered care; or
residency program curriculums for communicating with patients/families.
Methods Used to Formulate the Recommendations:
The original recommendations were created based upon: 1) a review of the literature, including
the SPIKES framework designed for use by adult oncologists giving diagnostic and prognostic
information to their adult patients; 2) input of a multidisciplinary work group, including
physicians, nurses, health psychologists, child life specialists, social workers, spiritual care, and
a patient family advisor; 3) input from four families of patients from different pediatric
subspecialties who recounted their experiences with being informed about life-altering
information involving their child’s health.
Updated recommendations were internally developed by the work group via a consensus
process using discussion of the literature and expert experience/opinion. If issues or
controversies arose where consensus could not be reached, the topic was escalated
appropriately per the guiding principles outlined in the UW Health Clinical Practice Guideline
Resource Guide.
Methods Used to Assess the Quality of the Evidence/Strength of the Recommendations:
Recommendations developed by external organizations maintained the evidence grade
assigned within the original source document and were adopted for use at UW Health.
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15
Internally developed recommendations, or those adopted from external sources without an
assigned evidence grade, were evaluated by the guideline workgroup using an algorithm
adapted from the Grading of Recommendations Assessment, Development and Evaluation
(GRADE) methodology (see Figure 1).
Figure 1. GRADE Methodology adapted by UW Health
Rating Scheme for the Strength of the Evidence/Recommendations:
GRADE Ranking of Evidence
High We are confident that the effect in the study reflects the actual effect.
Moderate We are quite confident that the effect in the study is close to the true effect, but it
is also possible it is substantially different.
Low The true effect may differ significantly from the estimate.
Very Low The true effect is likely to be substantially different from the estimated effect.
GRADE Ratings for Recommendations For or Against Practice
Strong The net benefit of the treatment is clear, patient values and circumstances
are unlikely to affect the decision.
Weak/conditional
Recommendation may be conditional upon patient values and
preferences, the resources available, or the setting in which the
intervention will be implemented.
Recognition of Potential Health Care Disparities: None identified.
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Collateral Tools & Resources
The following collateral tools and resources support staff execution and performance of the
evidence-based guideline recommendations in everyday clinical practice.
Metrics
ξ Anecdotal reports of patient-family experience
ξ Rate of documentation using standardized template
Patient Resources
Health Facts For You #7280 – Sharing Difficult News with Children
Other Resources
Patient and Family Centered Care Initiative (Carbone Cancer Center)
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17
Appendix A. Pocket Card
UW Health Clinical Practice Guideline
Sharing Life-Altering Information to Neonatal/Pediatric Patients & Families
S- Set up meeting to deliver life altering news
Prepare the family for meeting:
Determine who (family/family support) will be present.
Discuss & decide whether to include or exclude child in meeting & options for coverage.
Be sure family knows team will share information and how information will be shared.
Prepare the health care team for meeting:
Consultants & primary physician discuss results, findings, and recommendations before family meeting.
Team meets to plan family meeting, select meeting facilitator.
Remember family wants options & hope.
Be aware of family's culture, race, religious beliefs & socio-economic background.
Arrange for health interpreter if necessary.
Manage personal interruptions, e.g. pagers off.
Review how team members might respond to family’s questions & emotions using empathic, exploratory & validating responses.
Reflect on life-altering impact of information you will share.
Prepare the private meeting space i.e., tissues, pens/paper or note taker.
P- Assess the family’s perception and understanding
Be seated; make introductions (team members’ names, roles).
Explore what family already knows about child’s medical condition: “What have you been told about your child’s medical situation so far?”
Correct misinformation.
Tailor information to family’s level of comprehension.
I- Involve the family in the discussion
Confirm meeting agenda; ask family to say if they do not understand.
Encourage questions & assure of other opportunities to meet /discuss.
Be sensitive to family’s culture, race, religious beliefs & socio-economic background.
K- Share knowledge and information with family
Warn family life-altering news is coming (“I have some difficult news to share”)
Connect new information with information family already has.
Pace information, limit to a few key points. Check family’s understanding as information is shared. Use visual aids.
Avoid lecturing, “physician speak,” euphemisms, excessive bluntness & excessive prognostication. Discuss possible outcomes. Acknowledge future can be
unclear.
Balance hope with realism, & discuss palliative care, if appropriate: “There are always options.” “We will be here to support you.”
E- Addressing family’s emotions
Use empathic responses after observing family’s emotional response: “I can see how upsetting this is for you.” “I can tell you were not expecting to hear this.”
“I know this is not good news for you.” “I was hoping for a better result.”
Use exploratory questions to clarify thoughts/feelings expressed by family: “How do you mean?” “Tell me more about it.” “Could you tell me what you’re
worried about?”
Use validating responses for emotions and reactions: “I can understand how you felt that way.” Avoid equating your own experience with family’s experience.
S- Summing up, ending the meeting and going forward
Ask family if ready for treatment plan discussion.
Assure family they will participate in care decisions.
Encourage discussion & offer recommendations for particular treatment based on medical judgment.
Verify family understands the treatment plan.
Summarize mutual goals, time line. Manage family’s expectations about future communication & information sharing.
Offer help sharing information w/others (siblings, the child).
Provide information about support services- social work, spiritual care, health psych, support groups, community resources.
Document meeting & plans in medical record.
Team reflects upon and processes own emotions /reactions; discusses what worked, what didn’t, goals & responsibilities for implementing treatment plan.
Copyright © 2017 University of Wisconsin Hospitals and Clinics Authority
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18
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Contact: Lee Vermeulen, CCKM@uwhealth.org Last Revised: 10/2017CCKM@uwhealth.org