A. Autonomy involves the patient’s and family’s right to make choices regarding medical and supportive care. Autonomy involves “one’s right to self rule”. Each person has the right to self determination, privacy, and confidentiality. In this role the parents or guardian is given the authority to protect the automous interests of the child.
B. Beneficence is “to do good”. Beneficence involves decisions or actions that promote the best interest of the patient.
C. Nonmaleficence is “to do no harm”. This avoiding treatment in which the burden on the child outweighs the benefits.
D. Justice is the duty to give all persons fair and equal treatment. Justice if the fair allocation of resources and avoidance of discrimination in care provided.
E. Double effect applies to the situation in which producing the desired outcome for the patient has the risk of a negative
F. Fideity implies that medical professionals place their patient’s best interest first when considering options.
G. Veracity is the duty to tell the truth. Telling the truth means giving full disclosure about patient’s medical condition. Full disclosure includes being factual and not withholding information.
II. Cultural Competence
A. Culture “the sum of socially inherited characteristics of a human group that comprises everything which one generation can tell, convey, or hand down to the next”. It is learned patterns of living, including health beliefs and behaviors that have been handed down from generation to generation.
Culture influences illness and health behaviors. Illness behaviors can be influenced by a culture’s definition of the appropriate steps to take in seeking health care. Culture can also affect beliefs about the cause of illness, symptoms, and treatment.
As pediatric oncology nurse one must assess patient/ family culture and cultural beliefs with identify primary decision maker in the family structure.
B. Ethnicity is the cultural characteristics of a particular group which includes the norms, values, attitudes, and behaviors that are atypical and stem from a common culture of origin transmitted across generations.
III. Therapeutic Communication and Relationships
A. Communicate with the patient and the family in a style that is appropriate for family. Ask open ended questions to family and actively listen to family without prejudice. Provide the patient and family with honest, compassionate answers to their questions and concerns. Help them formulate questions as needed and guide them to appropriate resources.
IV. Regulatory Standards and Guidelines
To conduct clinical research investigators must comply with federal guidelines of the U.S. Drug Food and Drug Administration (FDA). The guidelines are:
A. All research with human subjects must be approved by an institutional review board (IRB) which serves to protect the rights of research subjects. The IRB approval must be obtained before the protocol is implemented.
B. An informed consent must be sign by patients or their parents/ legal guardian before treatment can begin. The informed consent document (approved by the IRB) must describe in lay terms the research, purpose of research, the risks, benefits, duration, and alterative to the research. Children of an appropriate age should be informed about their participation in the trial and their assent must be obtained. Assent indicates that the child agrees with participation in the research study.
C. The patient’s medical records should contain complete documentation of eligibility, treatment, modifications, outcomes, and toxicities.
D. Investigational drugs require a drug accountability log which details the disposition of every drug dose.
V. Healthcare Legislation
A. Legal Services
1. Candlelighters Childhood Cancer Foundation is a nonprofit organization that provides legal assistance in resolving problems with health insurance claims, employment discrimination, waivers into military service, and access to equal education.
2. The National Coalition for Cancer Survivorship, American Cancer Society, and the Cancer Legal Resource Center are also nonprofit organizations that provide information about legal rights, insurance issues, and advocacy services.
B. Health Insurance
1. The Comprehensive Omnibus Budget Reconciliation Act requires employers to offer group medical coverage to employers and their dependents who otherwise would lose their group coverage due to individual circumstances.
2. Health Insurance Portability with Accountability Act of 1996 allows individual to change job without losing coverage if they have been insured for at least 12 months.
3. Georgetown’s University Health Policy Institute’s “Consumer Guide for Getting and Keeping Health Insurance” provides information about insurance services available or survivors can contact their state’s office of insurance commissioner for information.
VI. Professional Boundaries
A professional boundary is “the space between the nurse’s power and the patient’s vulnerability”. The nurse recognizes and maintains boundaries that establish appropriate limits to the relationship. Boundary- continuum issues can include such things as giving and receive gifts from patients or families, buying groceries for hospitalized bound families, sharing the details of one’s personal life with patient and families, or participating in outside social contacts.
A. Types of Boundary Crossing
1. Self disclosure- The development of friendships and or dual relationships with patients and families.
2. Language- The use of terms of endearments such as dear, sweetheart, honey, should be avoided.
3. Physical touch- Permission of physical contact such as sitting on a patient’s bed, hugging, or touching, should be obtained from patient or family.
B. Professional Boundaries of Relationship ( Adapted from Professional Boundaries for Registered Nurses: Guidelines for the Nurse-Client Relationship, by The College and Association of Registered Nurses of Alberta, 2005)
1. Remuneration- Nurse is paid to provide care
2. Length of relationship- Limited to the time patient needs nursing care
3. Location of relationship- Location is limited to where the nursing care is provided
4. Purpose of relationship- Providing nursing care to the patient and family only
5. Structure of the relationship- The nurse provides care to the patient and the family
6. Power of balance- Unequal power- The nurse has power due to authority, knowledge, influence, and access to privileged information about the patient and family.
7. Responsibility for the relationship- Nurse is responsible for maintaining a professional relationship
8. Preparation for the relationship- Nurse is required to have formal knowledge, preparation, orientation, and training
9. Time spent in relationship- Nurse and patient relationship is confined to work hours.
VII. Principals of Teaching and Learning
Principals of teaching and learning include health teaching and anticipatory guidance about the disease (including symptoms and side effects), disease management in hospital and home settings, and about the promotion of the child’s growth and development process. In order to apply principles the pediatric oncology nurse (PON) assess teaching methods appropriate to the situation, child’s developmental level, learning needs, language preference and culture. The PON continually evaluates the effectiveness of the teaching and education.
A. Treatment Plan
1. Types of chemotherapy and side effects
2. Date, time, and location of next appointment
3. Days blood counts/ medication levels should be obtained
B. Signs to Report
2. Cough or difficulty breathing
3. Earache/ sore throat
4. Stomach pain
5. Red or irritated skin around child’s bottom
6. Blisters, rashes, ulcers on the skin
7. Redness, swelling, pus around central line
8. Mental Status changes
9. Changes in food intake
10. Anything that is not normal of the child and of the child’s behavior
C. Infection Precautions
1. Good handwashing
2. Proper nutrition
3. Mouth care
4. Avoiding crowds and contagious persons
5. Daily bath
6. Proper way to take a temperature
7. Proper line care
1. Purpose of each medication
2. Side effects of each medication
3. Proper administration of medication
5. Times of administration
1. Nutritional support
2. Do not give aspirin
3. Do not take temperature rectally
4. Only leukocyte- reduced irritated blood
VIII. Research and Evidence Based Practices
Phases of Clinical Trials
A. Phase I- Determines the maximum tolerated dose (MTD) of a specific therapeutic agent or combination of different agents evaluating toxicities and pharmacokinetics.
Patient requirements: Patient with advance disease and no other therapy with adequate organ function, and satisfactory life expectancy
B. Phase II- Determines the efficacy of a therapeutic agent in treating specific types of diseases. Studies are disease specific evaluating a single agent or combination of agents.
Patient requirements: Patient must have measurable disease and normal organ function with reasonable life expectancy and minimal previous exposure to therapeutic agents.
C. Phase III- Determines if the treatment is equal to or superior to the current/ standard treatment.
Patient requirements: Patient accrual is large involving multiple institutions. Patients are randomized between the experimental group and the control group.
D. Phase IV- Goal is to reduce the side effects, toxicities, and late effects of treatment while maintaining cure rates. Phase IV also investigates further the long term safety and efficacy of treatment.
Patient Requirements: not common in pediatrics
IX. Professional Self Care Strategies
A. Be your own best friend- Nurture feelings of self- acceptance and improve self esteem
B. Find time to be alone- Schedule “me time” to include activities to rejuvenate the mind, body, and soul
C. Take time off- Leave work at work
D. Build loving personal relationships- Find and build personal relationships outside of work with not just so workers
E. Acknowledge your feelings- Acknowledgment of feelings of grief, failure, and disappointment to self, colleges, or a counselor improves nursing care
F. Learn to say no and still feel good- Saying no can build tour sense f self esteem and sense of personal freedom
G. Provide terminal care to a dying child- Acknowledge feelings and find meaning in work will help resolve grief.
Baggot, C.R., Kelly, K.P., Fochtman, D., Foley, G. (2002) Nursing care of children and adolescents with cancer (3rd Ed.). Philadelphia: W.B. Saunders Co.
Kline, N.E. (Ed.). (2008). Essentials of pediatric nursing: A core curriculum (3rd Ed.). Glenview, IL: Association of Pediatric Hematology/ Oncology Nurses.
Nelson, M.B., Forte, K., Freiburg, D., Hooke, M., Kelly, K.P., O’Neil, J.B. (2007) Pediatric oncology nursing: Scope and standards of practice. Glenview, IL: Association of Pediatric Hematology/ Oncology Nurses.