Pediatric Palliative Care Communication

Resources for the Clinical Nurse Specialist

Alison Pirie, MSN, RN
Purpose/Objectives:
The purpose of this article was to highlight the lack of
communication skills pediatric practitioners have when
delivering bad news and introducing pediatric palliative
care to a family with a child with a life-limiting condition.
Fortunately, innovative tools and guidelines have been
appearing in recent literature, and the clinical nurse
specialist has an opportunity to implement these
communication tools by utilizing her core competencies.
Background/Rationale:
Over 10 years ago, the American Academy of Pediatrics
and the World Health Organization individually prepared
definitions and mandates concerning the importance of
pediatric palliative care. Approximately 450,000 children are
currently living at home with chronic, life-limiting health
conditions, many of whom are not receiving any palliative
care services.
Description of the Project:
Literature about practitioner communication practices
and resources was reviewed.
Outcome:
Advances are being made in pediatric palliative research,
guidelines, and clinical tools.
Interpretation:
New advances are not being disseminated to the pediatric
healthcare practitioner population, leaving practitioners with
inadequate education and preparation for implementing
pediatric palliative care.
Implications:
The clinical nurse specialist has the ability to cross through the
spheres of influence by providing holistic care, implementing
system changes, and by using a communication framework
when working with palliative care patients and families.
KEY WORDS:
clinical nurse specialist, communication,
pediatric palliative care
A
pproximately 53 000 children die in the United
States each year, with more than half of thembeing
younger than 1 year. Of these deaths, 16 000 are
attributable to a chronic condition. Four hundred fifty thou-
sand children live at home with chronic, life-threatening
conditions. Many of these children are unable to attend
school or participate in other age-appropriate activities.
Approximately 5000 of the 53 000 children receive hospice
services. These numbers illustrate the large number of
children who are chronically ill who will not live to adult-
hood but are not in the immediate end-of-life period. These
children may be appropriate for palliative care services. Al-
though there are no official criteria to define palliative care
eligibility, guidelines and suggestions are available in the
literature and from expert organizations.
1
This article presents the plight pediatric practitioners
face when communicating to families with children with
life-limiting conditions. For effective communication, spe-
cialized communication tools and skills are necessary
during all phases of the childs life, including the time of
diagnosis, changes in the status of the condition, and during
the childs end-of-life period. The clinical nurse specialist
(CNS) is perfectly situated to take the lead in pediatric pal-
liative care and communication with the childs family by
applying the specialized communication tools and re-
sources available. The CNS is also capable of developing
new tools for future use.
CNS Role in Pediatric Palliative Care
Communication and Coordination
The CNS has the potential to be a change agent and leader
within pediatric palliative care. The CNS direct care com-
petency definition describes care that fulfills the World
Author Affiliation: School of Nursing/Johns Hopkins Hospital, Johns
Hopkins University, Baltimore, Maryland.
The author reports no conflicts of interest.
Correspondence: Alison Pirie, MSN, RN, School of Nursing/Johns Hopkins
Hospital, Johns Hopkins University, 1800 Orleans St, Baltimore, MD 21287
(amcneil6@jhmi.edu).
DOI: 10.1097/NUR.0b013e31825aeb97
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Feature Article
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Health Organizations definition of pediatric palliative
care. The World Health Organizations definition
2
of pe-
diatric palliative care states that care is the active total
care of the childs body, mind, and spirit and also in-
volves giving support to the family. It begins when illness
is diagnosed and continues regardless of whether or not
a child receives treatment directed at the disease. In addi-
tion, the World Health Organization
2
encourages a broad
multidisciplinary approach to providing well-rounded care
to children and their families with life-limiting illnesses,
including using a holistic model to meet the physical, spir-
itual, and psychological needs of the child and family. The
National CNS Competency Taskforce
3
describes the CNS
in the direct care competency using a holistic perspective
when promoting health and improving quality of life.
The CNS is expected to provide advanced management
of health, illness, and disease states that require direct in-
teractions between patients and families.
3
Because the
CNS is able to bridge the gap between the 3 spheres of
influence: patient, nursing practice, and system, he/she
has the skills to identify the need for palliative care, de-
velop interventions and services, and subsequently pro-
vide the necessary coordination of care using the core
competencies.
Communication Between the Healthcare
Practitioner and the Family
Communication is considered the most commonly pro-
vided procedure in medicine. It is required in order to
come to an accurate diagnosis and establish a success-
ful treatment plan. Communication is fundamental to holis-
tic, family-centered care. Effective communication responds
to the complex needs of the whole patient and family.
Informativeness, interpersonal sensitivity, and partnership
building are essential elements to parent-child-physician
communication.
4
During a discussion involving members of the parent-
child-healthcare practitioner team, the healthcare practi-
tioner must include cognitive and affective communication
in order to address patient communication needs. Cognitive
communication serves the need to know and understand.
Affective communication focuses on the emotional need
to feel known and understood. Acknowledging individ-
ual elements of communication, especially when delivering
bad news, improves patient satisfaction with practitioner
communication.
4
Bad news is any news that can alter how a patient
sees his/her future, news that may disrupt a patients cur-
rent lifestyle, or any information that is not welcome.
4,5
However, healthcare practitioners receive little education
and practice in the delivery of bad news.
5
Communication
skills are learned in practice through trial and error, which
is in part attributable to the lack of qualified mentors
to educate young healthcare practitioners on this topic.
There is a current initiative in the preparation of pediatric
healthcare practitioners to increase skill development
in communication, particularly in the area of delivering
bad news.
4
Patient dissatisfaction is common with bad-news com-
munication because of the lack of skills and ineffective
communication styles of nurses and physicians.
5
Parents
interacting with healthcare practitioners cite dissatisfac-
tion with the information provided if they feel disrespected
or feel their fears are unacknowledged during these con-
versations. In surveys, parents consistently express their
desire to have as much information about their childs
condition, its implications, and prognosis as possible. Par-
ents want the information presented in a clear, jargon-free
manner as soon as it is available. The practitioner must
present information during these conversations with the
understanding of the familys cognitive and affective com-
munication needs.
4
Healthcare practitioners often perceive families as not
being ready to hear about their childs potentially poor
prognosis.
6
Although parents report having some cogni-
tive understanding of the prognosis, they still have diffi-
culty fully understanding the reality of their childs illness.
7
Because the family often requires additional time to accept
and digest the affective communication, the need for pal-
liative care is commonly realized by providers long before
parents, which delays implementation.
7
The Committee on Bioethics and Committee on Hos-
pital Care
8
recommend initiating palliative care discussions
at diagnosis. Currently, this is not the common practice.
Therefore, providers must first assess parent-readiness be-
fore introducing the concept of palliative care. McCabe
et al
9
found pediatric residents have limited end-of-life ex-
periences and educational opportunities. No study par-
ticipants agree with the statement feeling adequately
trained when asked about their end-of-life responsibil-
ities, including those involving parent communication.
9
Hendricks-Ferguson
6
explored parents perspectives of
initial palliative care and end-of-life conversations and
found that perspectives were individual and varied. She
concluded that a communication model should be devel-
oped that would incorporate a cognitive map to foster
earlier discussions on palliative care and end-of-life care
options for parents to consider during their childs ill-
ness.
6(p528)
Knowing how and when to initiate con-
versations about palliative care is difficult to standardize
because it is a very individualized concept.
RESOURCES FOR THE PEDIATRIC PALLIATIVE
CARE CNS
Guidelines for Delivering Bad News
Dr Chris Feudnter
10
identifies the delivery of bad news as
the first task of pediatric palliative care and developed a
model for healthcare practitioners. Several similar models
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and lists of guidelines exist to assist healthcare practi-
tioners in the delivery of bad news. The 3 phases of de-
livering bad news and the tasks included in each phase
are listed in the Table.
The third phase, planning, encompasses the second task
of pediatric palliative care as described by Dr Feudnter.
10
The second task of pediatric palliative care includes rede-
fining treatment goals and reframing the situation, as well
as planning for future opportunities where the parents
can ask questions and obtain information. Ending discus-
sions with plans for future communication and follow-up
reduces the likelihood that the family will feel abandoned
and will increase their satisfaction with the bad-news
communication.
10
As noted earlier, most practitioners have little experi-
ence and education in delivering bad news. Dr Feudnters
model for delivering bad news gives the practitioner direc-
tion for bad-news communication, especially when an ex-
perienced mentor is not available. This model addresses
all of the factors parents cite as reasons for dissatisfactions
following bad-news communication, including feelings of
disrespect, and allows the practitioner to deliver clear, com-
prehensive information on the patients condition. The CNS
is in a position to coordinate conversations involving bad
news, and therefore, the CNS is encouraged to use this
model. This places the CNS in the position to be the fam-
ilys consistent care coordinator from the first task of pedi-
atric palliative care.
A Communication Framework
Whereas physicians are frequently tasked with initiating
palliative care conversations with parents, it is often a
nurse who spends the most time at the bedside, giving
the nurse an accurate understanding of the childs suffer-
ing andthefamilys understandingof theillness.
7
Collaborative
care and communication between all members of the
childs healthcare team may assist in creating earlier, more
sympathetic conversations with a child and their family
regarding palliative care and possible end-of-life decisions.
The COMFORT Initiative describes 7 themes that serve
as a framework for early palliative care communication
and breaking bad news.
11
COMFORT stands for (1) com-
munication, (2) orientation and opportunity, (3) mindful-
ness, (4) family, (5) oversight, (6) reiterative and radically
adaptive messages, and (7) team. These principles should
guide the CNS in all discussions with families who have
children with life-limiting diagnoses. The COMFORT Ini-
tiative encourages narrative communication between the
healthcare practitioner and the patient, not communica-
tion at the patient. Its orientation into early palliative care
interventions will allow the CNS to fully understand a fam-
ilys needs and concerns as well as help the CNS cope
with unexpected conversation topics.
11
Although it is com-
monly the physician who leads the delivery of bad news,
but in ongoing conversations during direct patient care
and care coordination, the CNS can use these principles
to be equipped to handle the difficult questions that arise
after the initial shock of the bad news.
A Decision-Making Tool
Seattle Childrens Hospital Pediatric Advanced Care Team
developed a decision-making tool (DMT) to be used by
families with children with serious health conditions. The
goal of this tool is to allow the family to openly discuss
treatment goals with each other and with the medical
team. The DMT is a living document that is modified as
the patients needs and preferences evolve. The introduc-
tion of the DMT uses nonthreatening language to explain
its purpose and why it is being introduced to the patient
and family. For example: It can be used when your child
is diagnosed with a new condition, when you have deci-
sions to make about treatment options, planning for dis-
charge, or how to approach your childs care in the future.
Explaining its purpose with these phrases allows the fam-
ily to feel supported, rather than abandoned, during an
emotionally labile time. The tool requests the family and
interdisciplinary healthcare team complete information
about the patients medical diagnosis along with the benefits
and burdens of the treatments to this diagnosis. Information
is also elicited about quality-of-life values, patient prefer-
ences for involvement in goal and decision making, and
other contextual issues such as cultural preferences and
environmental factors. This tool walks not only the family
Table. Three Phases of Delivering Bad News
10
Phase Practitioner Tasks
Preparation 1. Rehearse what to say
2. Decide location of conversation
3. Investigate familys cultural beliefs
4. Visualize howthe delivery of bad news will unfold
Delivery
1. Summarize patients clinical course and
current status
2. Prepare family for undesirable information
with a warning shot
3. Factually state bad news
4. Allow a therapeutic silence to show respect and
empathy for familys situation
5. Healthcare provider follow-up with statement
acknowledging his/her own emotion or state
acknowledging emotions he/she observes
6. Answer questions from family
Plans
1. Redefine treatment goals
2. Reframe situation
3. Create plan for future communications with
the family
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through decision making and goal development, but the
healthcare practitioner as well. The Seattle Childrens Hos-
pital is fortunate enough to have a functioning pediatric pal-
liative care team, but any practitioner would be able to read
the directions provided on the DMT and walk through each
stepwith a family. By removing the wordpalliative fromthis
functional tool, it reduces the intimidation as well as the in-
ternal decisional conflict healthcare practitioners face when
considering the appropriate time to introduce palliative care
to a family.
12
The Initiative for Pediatric Palliative Care
The Initiative for Pediatric Palliative Care was originated
to address quality improvement, research, and education
focused on enhancing family-centered care for children
with life-limiting health conditions.
13
The Initiative for
Pediatric Palliative Care has developed a curriculum with
5 modules that prepare any member of an interdisciplin-
ary healthcare team to provide pediatric palliative care
services to their patients. The first module Engaging
With Children and Families addresses the decisional con-
flict that healthcare practitioners struggle with about how
and when to introduce pediatric palliative care. This mod-
ule aims to increase the healthcare practitioners ability
to engage the patients and families in making healthcare
decisions about treatment goals by assessing the familys
values and providing honest communication about treat-
ment goals.
13
Conclusion
Pediatric palliative care for children with life-limiting con-
ditions is rationalized throughout the literature as a vital
part of pediatric care but remains sorely underutilized.
Barriers to palliative care communication and coordina-
tion are documented, including the main barriers of lack
of practitioner education, experience, and known resources.
Proficiency within the CNS core competencies allows the
CNS to bridge the gaps between patient, nursing, and sys-
tem spheres while increasing family satisfaction with com-
munication and care coordination. As innovative clinical
tools and guidelines are developed, and the literature ex-
pands on this topic, the CNS has a responsibility to become
the leader of future pediatric palliative care communication
and coordination.
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Clinical Nurse Specialist
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