Refusal of Treatment in a Pediatric Population

Alex Graves, Kerry Sanson, Kerry Sawamura, Katie ONeil, Erin Colleli, Lisa Bardinelli, Heather Mugford

Do pediatric patients have the capacity to make competent, informed decisions about their treatment?

YouTube Video
http://abcnews.go.com/US/video/boy-with-cancerchooses-to-stop-treatment-15766475

Vocabulary
Informed Consent: permission granted in the knowledge of the possible consequences, typically that which is given by a patient to a doctor for treatment with full knowledge of the possible risks and benefits. Assent: the process whereby minors may agree to participate in clinical trials. It is similar to the process of informed consent in adults, however there remains some overlap between the terms. Competence: The ability to do something successfully of efficiently. Autonomy: The state of existing or acting separately from others. Emancipation: The fact or process of being set free from legal, social, or political restrictions; liberation. Adolescent: The period following the onset of puberty during which a young person develops from a child into an adult. Minor Treatment Statue: Allows minors to authorize treatment for medical conditions they they might leave untended if their parents were to know about them, such as sexually transmitted diseases, pregnancy, and substance abuse.

Mature Minor Doctrine

Common law in some US states
Allows an adolescent demonstrating maturity and competence to make medical decisions about their care, including refusal of life-sustaining treatment (Freyer, 2004) In all cases, the minor has been over 16, and the procedure hasnt been serious ("The mature minor," 2013)

Courts take into account age, intelligence, competence, understanding of the consequences of the proposed treatment/decision ("The mature minor," 2013)

Modified Substituted Judgment

For older adolescents who meet the criteria for competence
The decision to discontinue active therapy is communicated to a responsible adult who legally executes the decision (Freyer, 2004)

Substituted Judgment
A legal concept For previously competent minors (who are no longer competent) that had previously revealed their treatment preferences, wishes, and/or values to a responsible adult. (Freyer, 2004) It is not the opinion of the adult, but rather what the minor would have wanted (putting the adult in the shoes of the minor) (Docker, 1996) Importance of having advanced directives as an adolescent (Freyer, 2004)

What states allow it?

14 states allow mature minors to consent to general medical treatment either in all or certain circumstances. - Alabama, Arkansas, Idaho, Illinois, Kansas, Massachusetts, Montana, Nevada, Oregon, Pennsylvania, South Carolina, Tennessee, West Virginia

In South Carolina there is also a law saying that any licensed health worker may provide any necessary medical treatment to an child (regardless of age) without consent

3 states allow minors regardless of their age or maturity level to consent to treatment either in all or limited circumstances. - Delaware: if reasonable efforts were made to obtain parental consent first

- Alaska: if parent is either unavailable or unwilling to consent

- Louisiana: any treatment that the states attorney general believes to be necessary

Maturity
Analysis of adult maturity includes
Age Level of education Grades in school Work or other extracurricular activities Disciplinary issues Future plans

What states dont???

34 states have no mature minor exception in the general medical setting. Parental consent is the legal requirement
Vermont is one of them!
The legal age in Vermont to give informed consent is 18. A minor could give consent if
Married or have been married On active U.S. military duty

Are emancipated minors

Minors in Vermont
Minors 12+ can give informed consent for treatment of STDs, drug dependence and alcoholism
Parent is notified if they require immediate hospitalization for treatment

Minors 14+ can voluntarily admit themselves to hospital for mental health related treatment if they give consent in writing Minors of any age can give informed consent to medical treatment associated with rape, incest, or sexual abuse.

Questioning the Decisional Capacity of Adolescents

Main argument/research findings revolve around the difference between adolescent and adult decisionmaking
Adolescents are more prone to impulsive, risk-taking behavior Adolescents often fail to taken into account long-term as well as short-term consequences Even when adolescents do acknowledge the consequences of an action or decision they fail to have a mature appreciation of the significance of what is at stake they know the price of everything, but the value of nothing

Physiologic Differences: Adolescent Brain vs. Adult Brain

In adolescent decision-making there is greater engagement of the limbic system and less engagement of the prefrontal cortex
Limbic system= emotions Prefrontal cortex= problem-solving and complex thought

Pros
The child is given the patient right of autonomy
They can feel like they have a little control in a situation that they have no control over The child could have a better quality of life in the end of their life They can enjoy time at home with family

The child may find comfort in no longer being a burden to their family

Cons
The childs decision could cause conflict in the family
Giving up on all curative care means that there is a significantly lower chance for survival The child may want to end care because they feel like a burden to their family The child may not be competent:
Their brain may not be developed enough to make an informed decision about their care Medications or conditions of the disease may impair the childs ability to make an informed decision about their care It can be difficult to determine if a child is competent

Case Study
Amanda B. is a 16 year old female with a history of depression and a suicide attempt. She has been diagnosed with a stage 3 inoperable brain tumor which will require aggressive treatment. Amanda states, I just want to die, but her parents want her to continue treatment. Should she be deemed competent to make her own decisions regarding her treatment?

Case Study 2
JT is a ten year old boy who was diagnosed with ALL at age four. Although he has undergone countless rounds of treatment, his cancer continues to relapse. Four months earlier, JTs oncologist recommended another round of intense chemotherapy to see how his cancer will respond. Now, JT has relapsed for a third time and is rapidly deteriorating. JTs parents are convinced they need to go to a different hospital to try something new and cutting-edge; however, JT states I just want to go home and see my friends. Should JTs wishes be respected?

Nursing Implications
Family Education: It is essential for the nurse to educate the patient and family on: -Treatment options: covering prognosis, why the treatment was chosen, the planned course of treatment, side effects, and survival/curative rate -Options for refusal of treatment: home pediatric hospice and palliative care care (VNA),

Nursing Implications
Family support- nurses should ease the stress of the patients and parents by providing information on all of the support systems in and out of the hospital -Child Life Specialist- Pediatric health care professions who work with children and families to help cope with the stress of hospitalizations, illness, and disability. They also provide children with age-appropriate information for procedures and other tests they may encounter. -Therapists- Provide the patient and families someone to talk comfortably with. -Visiting Nurses Association (VNA)- allows for nurses to provide home care to patients with their everyday ALDs

Pediatric Palliative Care

Pediatric palliative care is specialized medical care for children with terminal illnesses. It focuses on providing relief from the symptoms, pain, and stress of the illness. -Goal is to improve quality of life for the child and the family. -Allows the child to be home surrounding by loved ones while truly enjoying the time they have left.
For more information on pediatric palliative care you can visit http://www.chpcc.org/about-us/

Childrens Hospice and Palliative Care Coalition

Works Cited
ABC. (2012). Boy with cancer choose to stop treatment [Web]. Retrieved from http://abcnews.go.com/US/video/boy-with-cancer-chooses-to-stop-treatment15766475 Coleman, D. L., & Rosoff, P. M. (2013). The legal authority of mature minors to consent to general medical treatment. Pediatrics, 131(786 Cramer, A. (2013). consent, privacy and medical records. Retrieved from http://www.vtmd.org/consent-privacy-and-medical-records Docker, C. (1996). Limitations of the best interests and substituted judgement standards. Retrieved from http://www.euthanasia.cc/bi.html Freyer, D. (2004). Care of the dying adolescent: Special considerations. NeoReviews, 113(2), 381-388. Retrieved from http://neoreviews.aappublications.org/content/pediatrics/113/2/381.full (2013). The mature minor doctrine. USLegal, Retrieved from http://healthcare.uslegal.com/treatment-of-minors/the-mature-minor-doctrine/