NUR 3306 – Deliverable 3 – Ethical Nursing Care in Genetics and Genomics

NUR 3306 – Deliverable 3 – Ethical Nursing Care in Genetics and Genomics

Diagnostic Testing and Diagnosis

Cystic fibrosis (C.F.) is an inherited disease characterized by the buildup of thick, sticky mucus that can damage many of the body’s organs. Signs and symptoms include progressive damage to the respiratory system and chronic digestive system problems. Patient A.H. presented to the hospital on August 20, 2019, with difficulty breathing and abdominal extension (DeBoeck, 2017). Patient’s family history was provided by the patient’s mother and father. Both parents have been tested and carry the C.F. gene. An individual must inherit two non-functioning C.F. genes – one from each parent – to have C.F. If both parents are carriers, there is a 1 in 4 (25 percent) chance that both will pass on the non-functioning gene, which would result in a pregnancy affected with cystic fibrosis (DeBoeck, 2017). This is the case in patient A.H.

The sweat test is considered the “gold standard” for the diagnosis of C.F. Quantitative pilocarpine iontophoresis, which measures the sweat chloride concentration, is used for diagnosis. To accurately interpret sweat test results, an appropriate volume of sweat must be obtained. Acceptable volumes of sweat are 75 mg for the Gibson-Cooke procedure and 15 µL for the Macroduct procedure. People with C.F. have more chloride in their sweat than people who do not have C.F. (Friedman, 2015). For a child who has C.F., the sweat chloride test results will confirm the diagnosis by showing a high chloride level. A baby has to sweat enough to do the test. Full-term babies usually produce enough sweat by two weeks of age (Brigman, 2016).

Ethical Considerations

There can come a point when standard cystic fibrosis (C.F.) treatments aren’t working as well as they should be, and the patient may become very unwell, requiring more care and support. This is the point when the C.F. team may decide that a lung or other organ transplant is necessary (Brigman, 2016). Patient A.H. will be assessed for a transplant if the C.F. team decides that the patient is no longer responding to the usual array of treatments. This will involve the patient going through a long, grueling assessment process, which can be very stressful. Eventually, it will be decided whether the patient is unwell enough to be listed for transplant but also well enough to recover from the operation. The area of ethical concern is the dilemma posed by the shortage of donor organs. Advances in immunosuppressive therapy have put increasing pressure on the supply of donor organs, and medical personnel sometimes find difficulties having to determining who among the potential recipients should receive a lifesaving graft. Working in pediatrics, it is frustrating and difficult to have to see these patients be bypassed for organs when the team can see the full life ahead of them. Trust must be placed in the ethical process, and know that each life is valuable in its own way (Brigman, 2016).

NUR 3306 – Deliverable 3 – Ethical Nursing Care in Genetics and Genomics

Ethical Theoretical Foundations

The theory of Utilitarianism with patient A.H. and his family engages the assessing and comparing consequences of different alternative options. Utilitarianism considers the overall costs and benefits of the use of the medication that may be needed and compares it to the overall costs and benefits of other possible options. From a Utilitarian perspective, what needs to be considered is the question of whether the benefit to patient A.H. from medications and treatments is sufficiently high to justify the care and that it will potentially have better consequences overall. Consequence-Based (Utilitarian) This perspective, founded by Jeremy Bentham, focuses on consequences and results and the pursuit of the common good; a central goal is to maximize happiness and minimize suffering for most people (Felzmann, 2017).

Legal and Professional Policies

The Cystic Fibrosis Foundation holds itself accountable to its donors, volunteers, people with C.F. and their families, and the public. The team will be sure to provide patient A.H. and family with all available resources, as stated below, that are placed into legal policy, health insurance knowledge, what insurance companies can and can’t do, as well as extending health insurance coverage under COBRA and disability and government benefits. Connections will also be in place with Social Security Disability Insurance (SSDI) benefits, Supplemental Security Income (SSI) benefits, Medicare and Medicaid coverage, and any employment issues, including protections under the Americans with Disabilities Act (ADA) and unpaid time off from work under the Family Medical Leave Act (FMLA) (Friedman,2015).

Interprofessional Care

The interdisciplinary team for patient A.H. will include a genetic counselor, a psychiatrist/psychologist, a geneticist, and a neurologist. Each plays an essential role in the patient’s care. The genetic counselor is available to clarify to the family the role of genetics in the disease. The psychiatrist/psychologist will be available to speak with the family about psychological concerns during testing, treatment, and care. The geneticist’s role will be to provide the family with guidance on the social, ethical, and legal implications of choices made concerning the patient’s care and treatment. Lastly, the pediatric neurologist is on board to provide continued care for the patient (De Boeck, 2017).

NUR 3306 – Deliverable 3 – Ethical Nursing Care in Genetics and Genomics

Nursing Care Strategies

The collection of data on the child with C.F. varies depending on the child’s age and the circumstances of the admission. The nurse providing immediate care to the patient and family will first Interview the caregivers, conducting a complete parent interview that includes the standard information, as well as data concerning respiratory infections, the child’s appetite, and eating habits, stools, noticeable salty perspiration, history of bowel obstruction as an infant, and family history for C.F., if known. The nurse will then assess the caregiver’s knowledge and also determine the caregiver’s knowledge of the condition. The nurse is to assess vital signs and, when collecting data about vital signs, include observation of respirations, such as cough, breath sounds, barrel chest, and signs of pancreatic involvement. The nurse will also examine the skin around the rectum for irritation and breakdown from frequent foul stools. Knowledge of pharmacological care, diet, and exercise will also be provided to the patient and family to provide whole health care (Friedman,2015).

References

Brigman C, Feranchak A. Liver involvement in cystic fibrosis. Current Treat Options Gastroenterol. 2016;9:484–96.

De Boeck K, Weren M, Proesmans M, Kerem E. Pancreatitis among patients with cystic fibrosis: correlation with pancreatic status and genotype. Pediatrics. 2017;115:e463–9.

Felzmann, Heike. (2017, November 28). Utilitarianism as an Approach to Ethical Decision Making in Health Care. Nurse Key. https://nursekey.com/utilitarianism-as-an-approach-to- ethical-decision-making-in-health-care-2/

Friedman KJ, Teichtahl H, De Kretser DM, Temple-Smith P, Southwick GJ, Silverman LM, Highsmith WE Jr, Boucher RC, Knowles MR. Screening Young syndrome patients for CFTR mutations. Am J Respir Crit Care Med. 2015;152:1353–7

Robichaux, Catherine, Dr., Ph.D., RN, CCRN, CNS. (2016). Ethical competence in nursing practice: Competencies, skills, decision-making. Retrieved from http://ezproxy.rasmussen.edu

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Explain the interdependency of genetics, genomics, and ethics in nursing care.