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Problem-Based Research

In the United States even though individuals 18 and older are able to make their own

medical decisions, the person responsible for making medical decisions for pediatric patients is

the parents or guardian (Diekema, 2018). The basis for granting this authority is in most cases

the parent knows more about the child and are better suited to understand their unique needs

(Diekema, 2018). Health care professionals have a duty to advocate for their patients therefore, a

parental decision about medical needs for the pediatric patient can sometimes be challenged if

the parent’s decision may not be in the best interest of the child (Diekema, 2018). Some states

will allow children to make their own medical decisions however, in most if not all cases the

child must be emancipated from their parents and of a certain age in order for this to occur

(Diekema, 2018). In some cases, if a child can be deemed to have decision-making capacity and

over a certain age, they should be allowed to participate in the decision-making process and the

medical staff should ensure their child’s voice is heard.

Statement of the Problem

Should pediatric patients over the age of sixteen be allowed to have a say in their medical

care if they can show to have decision-making capacity? According to Barstow et al, “Medical

decision-making capacity is the ability of a patient to understand the benefits and risks of, and

the alternatives to, a proposed treatment or intervention (2018).” Patients can show they have

decision-making capacity in four elements which include understanding the situation,

appreciation of the consequences, reasoning the thought process, and communicating wishes

(Barstow et al, 2018). Capacity can be determined by a medical physician and there are many

assessment tools that can be used. In order to determine if a patient has lack of capacity, the

medical physician must have clear and convincing evidence that the patient’s decision would
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cause unintended harm (Barstow et al, 2018). There are some countries that allow pediatric

patients to be tested for capacity and if deemed to have it are allowed to make their own medical

decisions or have a voice in the decision-making process.

One of a nurse’s main roles is to be an advocate for their patients. Being an advocate

includes education, being the voice, keeping a patient safe, and providing quality care (Morris,

2023). Nurses can be an advocate for pediatric patients by listening to their concerns about their

medical care and being that voice for them when they are unable. Parents make the decisions for

children under the age of 18 however, the nurse knows the patients just as well as the parent and

sometimes may know more of what is best for them without being biased. As a child develops

capacity to make decisions for themselves, they should be given a voice because they are the

only person that knows their body the best. Also, by allowed the pediatric patient to have say in

their medical care they will be better equipped to make harder decisions once they turn eighteen

and are the sole decision maker.

Literature Review

There is not a lot of research done about pediatric patients have decision-making capacity

in the U.S. however, there are research studies done in other countries. The study titled

Adolescents’ Capacity to Make Decisions in Healthcare: Perspectives of Serbian Primary Care

Physicians, aimed to explore the health care professionals views and experiences with adolescent

capacity in decision making; experiences with the parents and whether they gave their child

autonomy and consent; and views on the professionals role in an adolescent’s health care (2022).

The study was conducted using a qualitative research approach by interviewing twelve

pediatricians and gynecologists at eight primary institutions from March to May 2016 (Jeremic et
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al, 2022). It was agreed that even though an adolescents capacity to make decisions varies from

person to person, it can be enhanced through education and support.

The study titled Decision-Making Ability of Patients Undergoing Invasive Medical

Procedures was used to evaluate the decision-making process between adults and elderly patients

who have undergone medical procedures (2018). The study used a quantitative approach by

including 300 patients over the age of 18 over a period of 14 months using the Moral-

Psychological Department tool to evaluate the decision-making capacity (Wittman & Roberto,

2018). This study did not include the pediatric population but, it was a good study to see a tool

used by physicians to determine decision-making capacity.

The study titled A Shared Decision-Making Model in Pediatric Palliative Care: A

Qualitative Study of Healthcare Providers aimed at constructing a general decision-making

model focusing on the principles of shared decision-making practices and strategies to address

difficulties in pediatric palliative care (Cai et al, 2023). The study used a descriptive

phenomenology approach interviewing 27 physicians, nurses, and social workers with at least

three years working experience that took place between November 2022 to January 2023 (Cai et

al, 2023). It was shown that pediatric patients with life-limiting conditions depending on

developmental level, physical condition, and willingness should be involved in the shared

decision-making (Cai et al, 2023).

The study titled Involvement and Autonomy of Minors in Medical Setting: Perception of

Children Undergoing Surgery and Parents aimed to analyze the perceptions of minors and their

parents about what age a person is considered to be able to make medical decisions (Rodríguez-

Domínguez et al, 2023). The study involved 302 minors between the ages of 12 and 17 who were

undergoing and elective surgery and 302 parents (Rodríguez-Domínguez et al, 2023). The goal
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of the study was to promote a minor’s participation in making health care decisions and giving

them the opportunity to participate in the process when appropriate (Rodríguez-Domínguez et al,

2023).

Decision-Making and Mental Capacity is an evidence-based practice guideline that was

developed in October 2018 to help health care professionals support individuals to make their

own decisions and to help those who lack the capacity to do so (2018). The guideline was

developed for health and social care practitioners, independent advocates, and health care

professionals working with individuals who may or may not lack the capacity to make decisions

about their healthcare (NICE, 2018). It was intended to help health care professionals support

individuals make their own decisions, assess the decision-making capacity of a person sixteen

and older, and make best interest decisions for individuals who lack capacity (NICE, 2018).

Analysis

The “perspectives of Serbian primary care physicians” study interviewed seven

pediatricians and five gynecologists between the ages of 29 and 60 from eight different primary

healthcare centers in person lasting anywhere from 30 to 60 minutes (Jeremic et al, 2022). The

results from the study where broken down into three main categories which included decision-

making capacity of adolescents, parental behavior, and physician’s role (Jeremic et al, 2022). The

study showed that an adolescent’s capacity to have autonomy was one of the most important

conditions in order for the patient to have their right to consent exercised and that adolescents

reach capacity at individual paces having to do more with maturity rather than age (Jeremic et al,

2022). It was suggested that adolescents be encouraged and assisted in reaching their decisional

capacity by education from both parents and physicians (Jeremic et al, 2022).
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The “invasive medical procedure” study proved that age and education are not directly

related to the ability to make medical decisions (Wittman & Roberto, 2018). After the evaluation,

only two patients, one adult and one elderly, were shown to lack decision-making capacity and

there were only one adult and seven elderly that showed to have had no formal education

(Wittman & Roberto, 2018). It was suggested that due to the aging process, strategies should be

put into place to help educate elderly patients on autonomy and self-determination (Wittman &

Roberto, 2018).

The “palliative care” study helped to develop a model of shared decision-making in

pediatric palliative care with an approach from the three aspects of principle, process, and

participants (Cai et al, 2023). The study challenged the belief that age is a barrier to be about of

the decision-making process by suggesting that pediatric patients should participate in their

medical decisions according to their willingness and abilities (Cai et al, 2023). It was shown that

children are usually not involved in the decision-making process for palliative care because the

individuals involved underestimate the child’s capabilities, have protectiveness over the child, or

presumed complexity and uncertainty of the issue (Cai et al, 2023).

The “elective surgery” study used a descriptive observational approach and designed two

semi-structured questionnaires, one for minors and one for parents, administered one week after

the surgical intervention during the months of June and July 2022 (Rodríguez-Domínguez et al,

2023). The study showed that 20.1 percent of minors and 31.1 percent of parents believed that a

person should not be able to make medical decisions until the age of 18 (Rodríguez-Domínguez

et al, 2023). It was also shown that 74.9 percent of minors believed that pediatric patients 16 and

older should be able to make their own health care decisions (Rodríguez-Domínguez et al, 2023).
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Sixty percent of parents stated that the decision-making capacity should be based on each case

and examined individually to determine maturity (Rodríguez-Domínguez et al, 2023).

The evidence-based practice guidance was developed by the National Institute of Health

and Care Excellence to focus on advanced care planning, supporting decision-making, assessing

mental capacity, and making decisions for individuals that lack capacity while ensuring they are

maintaining their best interest (NICE, 2018). It was suggested that providers should undergo

training in how to apply the Mental Capacity Act 2005 and for facilities to have policies in place

about what interventions to take when approaching decision-making capacity (NICE, 2018).

Recommendations

I would recommend a current research study done in the United States using minor

patients, parents, and healthcare professionals to see what they think about medical decision-

making capacity. I also recommend testing the theory that pediatric patients over a certain age

should be able to make medical decisions. I would start with small things and work up to bigger

concerns after a lot of education. A research study could be Decision-Making Capacity:

Perspectives from Minors with Chronic Illnesses and it would include minors, parents, and

medical staff who either have a chronic illness or care for an individual with chronic illnesses. I

would use a qualitative approach but, a quantitative approach could be used in the future. I would

ensure the protection of human rights by informing the prospective participants of the study,

informed consent to participate, and ensuring confidentiality by keeping all information

anonymous.
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Resources

Barstow, C., Shahan, B., & Roberts, M. (2018, July 1). Evaluating medical decision-making
capacity in practice. American Family Physician.
https://www.aafp.org/pubs/afp/issues/2018/0701/p40.html#:~:text=Medical%20decision
%2Dmaking%20capacity%20is,the%20basis%20of%20informed%20consent.

Cai, S., Cheng, L., Wang, R., Zhou, X., & Peng, X. (2023). A shared decision-making model in
pediatric palliative care: a qualitative study of healthcare providers. BMC Palliative
Care, 22(1), 1–9. https://doi-org.libproxy.dtcc.edu/10.1186/s12904-023-01307-0

Decision-making and mental capacity. National Institute for Health and Care Excellence. (2018,
October 3). https://www.nice.org.uk/guidance/ng108/evidence/full-guideline-pdf-
6542486605

Diekema, D. (2018). Parental decision making. Parental Decision Making | UW Department of

Bioethics & Humanities. https://depts.washington.edu/bhdept/ethics-medicine/bioethics-
topics/detail/72

Jeremic Stojkovic, V., Vears, D. F., Matejic, B., Gazibara, T., Turza, K., & Cvjetkovic, S. (2022).
Adolescents’ Capacity to Make Decisions in Healthcare: Perspectives of Serbian Primary
Care Physicians. Journal of Child & Family Studies, 31(12), 3268–3280. https://doi-
org.libproxy.dtcc.edu/10.1007/s10826-022-02365-3

Morris, G. (2023, June 20). How nurses can advocate for patients. NurseJournal.
https://nursejournal.org/articles/how-to-advocate-for-patients/

Rodríguez-Domínguez, F. J., Osuna-García, T., Guillén, A., Pérez-Cárceles, M. D., & Osuna, E.
(2023). Involvement and Autonomy of Minors in Medical Settings: Perceptions of
Children Undergoing Surgery and Parents. Children (Basel, Switzerland), 10(12), 1844.
https://doi.org/10.3390/children10121844

Wittmann-Vieira, R., & Roberto Goldim, J. (2018). Decision-making ability of patients

undergoing invasive medical procedures. Acta Paulista de Enfermagem, 31(5), 497–503.
https://doi-org.libproxy.dtcc.edu/10.1590/1982-0194201800070