Running head: PEDIATRIC SHARED DECISION MAKING

Pediatric Shared Decision Making

Stephanie Logan
Ferris State University

PEDIATRIC SHARED DECISION MAKING

Abstract
This paper explores whether or not pediatric patients should be involved in the decisionmaking process of their own medical care. This is a complex topic that requires
analyzing each patient on an individual basis. Understanding the complexity of the topic
will help nurses and physicians better facilitate care to the pediatric population, as well as
the parents of whom are faced with difficult medical decisions. This paper will go over
theories that can be applied to each situation, the assessment of the healthcare
environment, inferences, implications, and consequences, and recommendations for
quality and safety improvements revolving care.

PEDIATRIC SHARED DECISION MAKING

Pediatric Shared Decision Making

Shared decision making is defined as, an approach where clinicians and patients
share the best available evidence when faced with the task of making decisions, and
where patients are supported to consider options, to achieve informed preferences
(Elwyn, G., Laitner, S., Coulter, A., Watson, P., & Thomas, R, 2010). This becomes a
controversial topic when shared decision-making is applied to the pediatric, or adolescent
population. The purpose of this paper is to delve into the topic, should the pediatric
population be included in their own care? Many adolescent teens and preteens, would
like the option to make medical decisions on their own. Often times, adults believe
adolescents should be involved in their own care, with a medical team, as well as their
parents. Having a better understanding of the pediatric population and the family
dynamic, will help nurses provide exceptional care for not only the patient, but also the
family as a whole. In addition, this paper will cover theories that can be applied to the
pediatric population dealing with a medical disease, the assessment of the healthcare
environment, inferences, implications, and consequences, and recommendations for
quality and safety improvements.
Theory Base
Theories are imperative to quality nursing care. By implementing a theory into
practice, the nurse can follow the model and focus on the care and the needs of the patient
that are inline with the theory being used. The Ericksons Modeling and Role-Modeling
Theory, and the Transtheoretical Model of Change are both great theories that help the
staff and patient, as well as the family deal and cope with the decisions that need to be

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made. By enabling each of these theories, the nurse is taking the initiative to promote
health for the adolescent patient.
Ericksons Modeling and Role-Modeling Theory
The Ericksons Modeling and Role-Modeling Theory, can be used when
facilitating care and helping make important medical decisions. Helen Erickson, Evelyn
M. Tomlin, and Mary Anne P. Swain developed this nursing theory. The model was first
published in 1983 in the book, Modeling and Role Modeling: A Theory and Paradigm for
Nursing (Modeling, 2013). By utilizing this theory, nurses can provide the same
compassionate care to all patients, regardless of their personal background.
In the theory, modeling is the process by which the nurse seeks to know and
understand the patients personal model of his or her own world, as well as learns to
appreciate its value and significance (Modeling, 2013). Modeling recognizes that each
patient sees the world in his or her own light, and may have a different view from
everyone else in the world; they are their own unique being. The nurse uses the process
to develop an understanding of the patient and their beliefs by understanding their unique
viewpoint of the world, this process is called modeling.
Role modeling is the process by which the nurse facilitates and nurtures the
individual in attaining, maintaining, and promoting health (Modeling, 2013). This
concept promotes the patient as being the expert in his or her own care, as well as
knowing what he or she needs when it comes to being helped, or their medical treatment.
Nurses have three main roles within this model. They are nurturance, facilitation, and
unconditional acceptance. As a nurturer, the nurse provides care and comfort to the
patient based on their individual needs. As a facilitator, the nurse helps provide

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information and resources for the patient to facilitate the steps towards improving health.
Unconditional acceptance, means the nurse will accept each patient just as he or she is,
without any attached conditions.
The five goals of nursing intervention within this theory are to build trust,
promote the patients positive orientation, promote the patients control, affirm and
promote the patients strengths, and set mutual, health-directed goals (Modeling, 2013).
If each of these goals are followed, the nurse will build the trust or rapport with the
patient, will promote the patients strengths, and will provide health directed goals that
are in the best interest of the patient. The patient will begin to trust the nurse as an
advocate for them, and may also begin to accept their parent or guardians decisions
regarding care.
The Transtheoretical Model of Change
Prochaska and DiClemente developed the Transtheoretical Model of Change
(TTM) in the late 1970 (The Transtheoretical Model, 2013). Prochaska and
DiClemente first developed this model by examining the experiences of smokers who
quit on their own, versus those requiring further treatment. The goal of examining these
experiences was to try to understand why some people were capable of quitting on their
own. Ultimately, it was decided that people quit smoking if they are ready to do so.
Because of this revelation, the TTM focuses on the decision-making of the individual and
is a model of intentional change.
Precontemplation is the first stage in the TTM. This stage is when people do not
intend to take action in the foreseeable future, which is defined as the next six months.
The contemplation stage is when people are intending to start the healthy behavior or

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change. These people or patients are aware of the problem and are thinking about taking
action. When in the preparation stage, the patients are preparing to take action. They are
getting emotionally ready and intend to act upon change. During the action stage, the
patient intends to keep moving forward with the change, and is taking the necessary
actions. The maintenance stage is when the patient is keeping up with the necessary
actions for change, and not backing out or slowing down. Finally the termination stage,
this is when the patient comes to the appropriate point to terminate the change, meaning
they have hit the goal that they were reaching for. If the patient has a relapse in their goal
or disease process, they must start over completely, at the beginning stage of the TTM,
which is the precontemplation stage (The Transtheoretical Model, 2013).
To better understand this model and the different stages, take a 16-year-old patient
that has cancer for example. Before the patient is actually diagnosed with cancer, the
patient is practicing the precontemplation stage. The patient is still unaware of the
disease and is going about their day in a normal way, playing with friends, life is good
and no change is needed. Next, in the contemplation stage, the patient is now aware of
the disease. The physicians tell the patient and family about the prognosis and different
options. The patient now is thinking about taking action and going forward with the
treatment. In the preparation stage, the patient has now decided to go with the treatment
and is getting emotionally ready for it. The teen is trying to prepare in this stage and
learn everything they can about the disease and what they are about to go through. Next,
in the action stage, the patient is now going through with the treatment and has already
weighed out the options in their mind. They are set on taking action and following
through with it. In the maintenance stage, they are fully committed and are following

PEDIATRIC SHARED DECISION MAKING

through with the treatment. The patient is not backing down and is going through with
everything necessary to complete the change, or to cure the cancer. Termination stage is
the ending point, when appropriate. This is when the patient finally has the positive news
from the physician. If the cancer does not come back, the patient can be done with the
Transtheoretical Model. If the patient has a relapse of the cancer, they must start the
model completely over, starting with the precontemplation stage.
As nurses, it is important to understand each of these stages and to be able to
recognize which stage the patient is currently in. Dealing with a disease and trying to
process it all involves constant change within the model. By understanding what stage
the patient is in, nurses can help facilitate better communication, provide an appropriate
atmosphere, and give emotional encouragement.
Assessment of the Healthcare Environment
Pediatricdecisionmakingisaverycomplextopicrevolvingmedicaldecisions
basedonthecarethatwillbeprovidedtotheadolescentpatient.Thereisnotoneset
formulatohelpfamiliesandhealthcareprofessionalsindecidingiftheadolescentshould
beinvolvedinthedecisionmakingprocessofcare.Manyissuesarisesuchaslegal
issues,whethertheadolescentistherightageormaturitylevel,andthecomplexityofthe
diagnosis,abilitytounderstand,andthateachsituationisunique,amongthemany.
LegalIssues
Legalissuescanarisewhenthepatientandparentsdisagreeontherouteofcare
eachbelievesisinthebestinterestofthepatient.Patientsoftenbelievetheyshouldget
tomakethefinaldecision,becauseitistheirlifeandbodygoingthroughtherigorous
treatment.Becauseofthis,nursesmustunderstandthefamilydynamicandtrytohelp

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facilitateindividualizedcareandeducationtothepatientandfamily.Byutilizingthe
ModelandRoleModelingTheory,createdbyHelenErickson,thenursecanfacilitate,
nurture,andprovideunconditionalacceptancetothisfamilyintheirtimeofneed.
Right Age or Maturity Level
What is the right age or maturity level of a minor to be considered competent in
making his or her own medical decision? To determine the competency of a minor,
courts look at age, experience, degree of maturity, judgment skills, the demeanor of the
minor, evidence of separateness from parents, and the particular faces in the case
(Hickey, 2007, p. 101). It is crucial for the safety of the pediatric patient to have their
competency properly assessed by the physicians, nurses, and parents. If the patient is
cleared to be involved in the care without being properly assessed, they may be putting
their own health at risk. Again, by using the Modeling and Role Modeling Theory, nurses
and physicians can monitor the patient and their family. By doing so, they can begin to
use their best judgment when deciding how involved the patient should be in care.
Because there is not a formula to follow, medical staff must follow the code of ethics as
well as best judgment when making crucial judgment calls.
Complexity, Understanding, Situational
Each patient and situation is different from one another. Laws and hospital
personnel have not designed a formula to help decide if a patient should be involved in
care, because every person and case is unique. One patient may be mature and old
enough, but the complexity of their case makes it difficult for them to understand.
Another case may be very basic and straight forward, but the patient cannot process the
information given in a mature manor. When implementing care, the medical team must

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remember that the complexity of each case goes further than the disease; meaning there is
an adolescent patient trying to process the information given and would like to be
involved, too.
Inference/Implications/Consequences
Many factors play a role in the decision-making process for an adolescent patient.
In the adult world, patients go to the doctor, receive a diagnosis, and make a medical
decision on their own. This is not the case for the pediatric patient. The pediatric patient
must rely on the decision making process with the guidance of their family and medical
staff. Many issues arise when trying to figure out if the adolescent patient should be
involved in care. A few of the reasons are, legal issues, the maturity level of the patient,
and the complexity and understanding of the situation.
Legal
Adult patients have the moral and legal right to make their own medical decisions.
Adolescent patients cannot make legal decisions without the consent of their parents,
even if they would like to. When a parent or legal guardian is making a medical decision
for their child, it should be based on the decision to better their child. If a medical
decision is made that is not in the best interest of the child, authorities have the option to
challenge the decision. If a guardian makes a medical decision for their child that goes
against any life-sustaining treatment or based off of their own religious beliefs, the law
will intervene and rule against their decision (Diekema, 2014). The American Academy
of Pediatrics stated in 1995, that they recommend patients participate in their medical
decision-making, depending on their psychological development (Fiks, Localio, Asch,
Guevara, 2010). Although the minor has the right to be involved in the decision-making

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process, the parents still have the legal right make the decisions regarding care for their
minor child.
Development and Maturity
The rational part of the human brain is not fully developed until the age of 25
(Wyatt, Kirk, List, Brinkman, Lopez, Asi, 2015). Recent research has found that
adolescent and adult brains work differently. Adults process information with the
prefrontal cortex, the brains rational part. This is the part of the brain that responds to
different situations with good judgment, and is also aware of the long-term consequences
when making decisions. Adolescents are usually incapable of making a rational decision.
Teens often think with the emotional part of their brain, the amygdala. When presenting
a child with a hard medical decision, nurses and physicians, as well as family must take
into account their age and maturity level. Maturity plays into being able to think in a
rational way, instead of only emotional judgment. A child that is not mature enough will
have a hard time looking past the present moment. They will see the hurt, pain, and
struggle that they will currently go through, instead of the end results. If a patient is
struggling with rational decisions, it is best for the adults to make the decisions based on
what they believe to be best.
An example of a minor making a poor decision on his own is, Dennis Lindberg Jr.
Dennis had a hard life from the start, relying on the kindness of strangers to find a way to
survive. His parents did not properly take care of him; therefore he was placed in the
care of his aunt. Shortly after moving in with his aunt, he was diagnosed with leukemia.
Not only did the aunt allow Dennis to make all of the medical decisions on his own, he
was a newly practicing Jehovahs Witness. While going through treatment, doctors told

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him that he would need a blood transfusion to potentially survive the cancer. Because of
the new religious beliefs, Dennis refused the transfusion. Ultimately, because of this
decision, Dennis died at the age of 14, when his life could have been saved had his
guardian and medical staff intervened. Dennis is just one example of an adolescent
making a poor medical decision on his own. Dennis should have been evaluated to find
out if his brain was mature enough to make the decision on his own. If medical
professionals evaluated him and found him to be mature enough to make important
medical decisions, he could have made those decisions with the assistance of his aunt and
medical staff. If they realized he was not mature enough, staff and family should have
intervened to make the important decisions for him based on his own safety and wellbeing (Black, 2007).
Situational and Complexity
Not only has medical treatment become more sophisticated as technology
advances, the medical cases have become more complex as well. When choosing which
route of care is best for the patient, there is no right answer. Prior to deciding on the
treatment, physicians do not guarantee a course of action will result in a positive ending.
Although they understand the medical body, they do not know how each individual will
respond to the treatment. Given this, each situation and complexity is completely
different. During the beginning stages of creating a plan of care, it is important for the
physicians and nurses to explain to the patient and family what they believe is going on.
If the medical staff feels the situation is more complex and difficult to understand, they
must voice their opinion during a family meeting, or care conference. Although it is

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important to involve the patient if they are deemed fit, it is also crucial for the physicians
to keep the safety of the patient a priority.
Recommendations for Quality and Safety Improvements
With exceptional quality and safety of care given by the nurses to the patients and
family, medical outcomes and patient satisfaction will increase. Properly staying up to
date with education on the quality and safety guidelines that can be found from, The
American Nurses Association (ANA), and Quality and Safety Education for Nurses
(QSEN) will help facilitate this greater care.
American Nurses Association
The ANA is the voice of nursing. This association represents the interests of the
nations 3.4 million registered nurses (American Nurses Association, 2010). The
definition of nursing is, the protection, promotion, and optimization of health and
abilities, prevention of illness and injury, alleviation of suffering through the diagnosis
and treatment of human response, and advocacy in the care of individuals, families,
communities, and populations (American Nurses Association, 2010). It is in the nursing
duty to protect and advocate for the patient and family together. This can be done
through communication, education, and collaboration, which are three standards that can
be found within the ANA Standards of Practice (American Nurses Association, 2010).
Communication. The ANA defines communication as, The registered nurse
communicates effectively in a variety of formats in all areas of practice (American
Nurses Association, 2010). Nurses communication is number one in importance when
advocating for the patient. If a nurse does not properly communicate, they cannot
educate the patient and family, voice opinions and concerns with the medical staff, and

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speak up for the patients wishes. This is a difficult time for the parents and child.
Medical staff are continuously around medical jargon, and watching many patients make
difficult medical decisions. A majority of the time, these families are not used to making
such a difficult decision, and have a hard time understanding and processing what is
going on. By having quality communication, nurses can help facilitate a positive
environment and make sure the patient and family fully understands what they are being
presented with. Quality communication can help bridge the gap between the physicians,
parents, and the patient when they are trying to decide on the route of care that they feel
is best for the patient.
Education. Education is explained by the ANA as, The registered nurse attains
knowledge and competence that reflects current nursing practice (American Nurses
Association, 2010). Not only must nurses educate their patients and families, they must
educate on the current nursing practice. It is important to present what the research is
currently supporting. Nurses cannot assume that the patient knows what is going on or
fully comprehends. Because of this, nurses must properly educate and answer any
questions they may be presented with. By properly educating, patients and families can
begin to make an educated decision on the plan of care they would like to take. If the
parents and child are not properly educated, the family may make a decision that is not in
the best interest of the patient, not knowing they are not helping the patient. By
providing information over and over again through communication and education, the
family will begin to understand what the outlook looks like. Nurses must remember the
stress the family is going through, and just because they are told something once, it may
not sink in at that given moment. Nurses must be patient, reiterate, and answer any

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questions that the family may present. Giving a comfortable and secure environment will
help the family feel more open to the education process.
Collaboration. The ANA describes the collaboration role of a nurse as, The
registered nurse collaborates with the healthcare consumer, family and others in the
conduct of nursing practice (American Nurses Association, 2010). By collaborating and
working as a team, the patient may have a better chance of having their voice heard. As
long as everyone involved in the care is on the same page, the parents may feel less
panicked and trust the medical professionals. By creating a positive environment to
facilitate care, the patient may have more of a desire to fight the diagnosis they have been
told.
Quality and Safety Education for Nurses
The overall goal for Quality and Safety Education for Nurses (QSEN) project is
to meet the challenge of preparing future nurses who will have the knowledge, skills and
attitudes (KSAs) necessary to continuously improve the quality and safety of the
healthcare systems within which they work (Cronenwett et al., 2007). Nurses should be
prepared to continuously improve the quality and safety through patient-centered care,
teamwork and collaboration, and safety. By having knowledge, skills, and attitudes that
are necessary to continuously improve, quality care will continue to rise for the
adolescent patient.
Patient-centered care. Patient-centered care recognizes that the patient and
family is the main focus and is in control. Providing compassion and coordinated care
based on the patients preferences, values, and needs is also recognized within patientcentered care (Cronenwett et al., 2007). The key to providing quality patient-centered

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care is to see the situation through the patients eyes. The nurse must respect and
encourage the individual to express his or her own concerns and attitude towards the care.
If the nurse begins to understand the patients point of view, they may be able to express
to the parents and physicians what the patients ideas are, in an easier way for everyone to
understand. If the patient has an uneducated viewpoint, the nurse can properly educate
and then begin to advocate in a proactive way.
Teamwork and collaboration. QSEN defines teamwork and collaboration as,
Function effectively within nursing and inter-professional teams, fostering open
communication, mutual respect, and shared decision-making to achieve quality patient
care (Cronenwett et al., 2007). Teamwork and collaboration is crucial when handling a
complex case with many different dynamics. Within the team, it is important to utilize
ones own strengths, while recognizing other limitations. Teamwork works effectively
when there are different viewpoints and perspectives being offered. Nurses can give their
own point of view with the patient-centered care in mind. Often times the physicians
look at the diagnosis simply from the medical standpoint. They do not recognize the
patient and their well-being, as well as they do the disease. Parents are often
overwhelmed and dwelling on the thought of potentially losing their child. The nurse can
look at things from the patients viewpoint and try to speak up in order to advocate what
they feel is the best treatment for the patients well-being.
Safety. The staff is trying to treat the disease, but the safety of the patient must
always come first. Nurses and physicians will help keep the patient safe by suggesting
and implementing evidence-based research. Current research will provide the family and
patient with the safest innovative technology possible to treat the disease within the

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patient. If the staff presents current research, not only will they be presenting the best
measures possible, they will also be implementing safety by trying to prevent errors and
other medical complications.
Conclusion
A medical decision revolving adolescent patients is a complex and is difficult to
make. When faced with a patient that would like to be involved in care, there are many
things that must be considered. Is the patient an appropriate age and maturity to be
involved? Does the patient understand and comprehend the diagnosis? Throughout the
complicated process, the nurse must always keep the patient safe while advocating and
providing emotional support. This is a difficult time for not only the patient, but the
family as well. If the nurse begins to understand where the patient is coming from, the
can pave the way to bridge the gap with communication between the patient, family, and
physicians.

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