Resolving Ethical Dilemmas Faced by Nurses
4. What are the duties of surrogate decision makers? (Hook & Mueller, 2005)
The primary goal of nursing and other health-care professions is to keep people alive and well or, if this cannot be done, to help them live with their problems and die peacefully. To accomplish this, health-care professionals struggle to improve their knowledge and skills so they can care for their patients, provide them with some quality of life, and help return them to wellness. The costs involved in achieving this goal can be astronomical.
Questions are being raised more and more often about who should receive the benefits of this tech- nology. Managed care and the competition for resources are also creating ethical dilemmas. Other difficult questions, such as who should pay for care when the illness may have been due to poor health- care practices such as smoking or substance abuse, are also being debated.
Practice Issues Related to Technology Genetics and the Limitations of Technology In issues of technology, the principles of benefi- cence and nonmaleficence may be in conflict. A specific technology administered with the intention of “doing good” may result in enormous suffering.
Causing this type of torment is in direct conflict with the idea of “do no harm” (Burkhardt &
Nathaniel, 2007). At times, this is an accepted con- sequence, such as in the use of chemotherapy.
However, the ultimate outcome in this case is that recovery is expected. In situations in which little or no improvement is expected, the issue of whether the good outweighs the bad prevails. Suffering induced by technology may include physical, spiri- tual, and emotional components for the patient and the families.
M: Massage the dilemma O: Outline the option R: Resolve the dilemma
A: Act by applying the chosen option
L: Look back and evaluate the complete process, including actions taken
box 4-3
The Moral Model
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Today, many infants who have low birth weight or birth defects, who not so long ago would have been considered unable to live, are maintained on machines in highly sophisticated neonatal units.
This process may keep babies alive only to die several months later or may leave them with severe chronic disabilities. Children with chronic disabili- ties require additional medical, educational, and social services. These services are expensive and often require families to travel long distances to obtain them (Urbano, 1992).
The use of ultrasound during pregnancy is an expected standard of care. In the past these pictures were mostly two-dimensional and were used mostly to determine the size of the fetus for development and in relationship to the mother’s pelvic anatomy.
Today, with the advanced technology, visualization of internal organs such as the heart, kidneys, and brain is possible. If a defect is found, parents now have additional options, which present further ethical decisions.
Genetic diagnosis and gene therapy present new ethical issues for nursing. Genetic diagnosis is a process that involves analyzing parents or an embryo for a genetic disorder. This is usually done before in vitro fertilization for couples who run a high risk of conceiving a child with a genetic dis- order. The embryos are tested, and only those that are free of genetic flaws are implanted.
Genetic screening is used as a tool to determine whether couples hold the possibility of giving birth to a genetically impaired infant. Testing for the most common genetic disorders has become an expected standard of practice of health-care provid- ers caring for women who are planning to become pregnant or who are pregnant. Couples are encour- aged to seek out information regarding their genetic health history in order to identify the possibilities of having a child with a genetic disorder. If a couple has one child with a genetic disorder, genetic spe- cialists test the parents and/or the fetus for the presence of the gene.
Genetic screening leads to issues pertaining to reproductive rights. It also opens new issues. What is a disability versus a disorder, and who decides this? Is a disability a disease, and does it need to be cured or prevented? The technology is also used to determine whether individuals are predisposed to certain diseases, such as breast cancer or Hunting- ton’s chorea. This has created additional ethical issues regarding genetic screening. For example:
Bianca, 33 years old, is diagnosed with breast cancer. She has two daughters, ages 6 and 4 years.
Bianca’s mother and grandmother had breast cancer.
Neither survived more than 5 years post-treatment.
Bianca undergoes a lumpectomy followed by radia- tion and chemotherapy. Her cancer is found to be nonhormonally dependent. Due to her age and family history, Bianca’s oncologist recommends that she see a geneticist and have genetic testing for the BRCA-1 and BRCA-2 genes. Bianca makes an appointment to discuss the testing. She meets with the nurse who has additional education in genetics and discusses the following questions: “If I am posi- tive for the genes, what are my options? Should I have a bilateral mastectomy with reconstruction?”
“Will I be able to get health insurance coverage, or will the companies consider this to be a preexisting condition?” “What are the future implications for my daughters?”
If you were the nurse, how would you address these concerns?
Genetic engineering is the ability to change the genetic structure of an organism. Through this process, researchers have created disease-resistant fruits and vegetables and certain medications, such as insulin. This process theoretically allows for the genetic alteration of embryos, eliminating genetic flaws and creating healthier babies. This technol- ogy enables researchers to make a brown-haired individual blonde, to change brown eyes to blue, and to make a short person taller. Envision being able to “engineer” your child. Imagine, as Aldous Huxley did in Brave New World (1932), being able to create a society of perfect individuals: “We also predestine and condition. We decant our babies as socialized human beings, as Alphas or Epsilons, as future sewage workers or future . . . he was going to say future World controllers but correcting himself said future directors of Hatcheries, instead”
(p. 12).
The ethical implications pertaining to genetic technology are profound. For example, some ques- tions raised by the Human Genome Project relate to:
■ Fairness in the use of the genetic information.
■ Privacy and confidentiality of obtained genetic information.
■ Genetic testing of an individual for a specific condition due to family history. Should testing
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be performed if no treatment is available?
Should parents have the right to have minors tested for adult-onset diseases? Should parents have the right to use gene therapy for genetic enhancement?
The Human Genome Project (HGP) is dedicated to mapping and identifying the genetic composi- tion of humans. Scientists hope to identify and eradicate many of the genetic disorders affecting individuals. Initiated in 1990, the Human Genome Project was projected to be a 13-year effort coordi- nated by the U.S. Department of Energy and the National Institutes of Health. However, because of swift technological advances, in February 2001 the scientists announced they had cracked the human genetic code and accomplished the following goals (Human Genome Project Information, 2002):
■ Identified all of the genes in human DNA
■ Determined the sequences of the three billion chemical bases that make up human DNA
■ Stored this information in databases
■ Developed tools for data analysis
■ Addressed the ethical, legal, and social issues that may arise from the project
Rapid advances in the science of genetics and its applications present new and complex ethical and policy issues for individuals, health-care personnel, and society. Economics come into play because, currently, only those who can afford the technology have access to it. However, more recently many health insurance companies will cover certain types of prenatal genetic testing, particularly when a pro- pensity for a disorder exists due to family history or ethnicity. Efforts need to be directed toward creating standards that identify the uses for genetic data and the protection of human rights and con- fidentiality. As of 2012, due to the amount of data collected, the HGP has developed a “universal storage area” so that this information is internation- ally accessible to scientists, geneticists, and research- ers (www.genome.gov). This is truly the new frontier.
Stem Cell Use and Research
Over the last several years, issues regarding stem cell research and stem cell transplant technology have come to the forefront of ethical discussion.
Stem cell research shows promise in possibly curing neurological disorders such as Parkinson’s disease, spinal cord injury, and dementia. Questions have been raised regarding the moral and ethical issues of using stem cells from fetal tissue for research and the treatment of disease. Stem cell transplants have demonstrated success in helping cancer patients recover and giving them a chance for survival when traditional treatments have failed.
A new business has emerged from this technol- ogy as companies now store fetal cord blood for future use if needed. This blood is collected at the time of delivery and may be used for the infant and possibly future siblings if necessary. The cost for this service is high, which limits its availability to only those who can afford the process.
When faced with the prospect of a child who is dying from a terminal illness, some parents have resorted to conceiving a sibling in order to obtain the stem cells for the purpose of using them to save the first child. Nurses who work in pediatrics and pediatric oncology units may find themselves dealing with this situation. It is important for nurses to examine their own feelings regarding these issues and understand that, regardless of their personal beliefs, the family is in need of sensitivity and the best nursing care.
A primary responsibility of nursing is to help patients and families cope with the purposes, ben- efits, and limitations of the new technologies.
Hospice nurses and critical care nurses help patients and their families with end-of-life decisions. Nurses will need to have knowledge about the new genetic technologies because they will fill the roles of coun- selors and advisers in these areas. Many nurses now work in the areas of in vitro fertilization and genetic counseling.
Professional Dilemmas
Most of this chapter has dealt with patient issues, but ethical problems may involve leadership and management issues as well. What do you do about an impaired coworker? Personal loyalties often cause conflict with professional ethics, creating an ethical dilemma. For this reason, most nurse prac- tice acts now address this problem and require the reporting of impaired professionals and providing rehabilitation for them.
Other professional dilemmas may involve working with incompetent personnel. This may be
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frustrating for both staff and management. Regula- tions created to protect individuals from unjustified loss of position and the enormous amounts of paperwork, remediation, and time that must be exercised to terminate an incompetent health-care worker often make management look the other way.
Employing institutions that provide nursing services have an obligation to establish a process for the reporting and handling of practices that jeop- ardize patient safety (ANA, 1994; IOM, 2007).
The behaviors of incompetent staff place patients and other staff members in jeopardy; eventually, the incompetency may lead to legal action that may have been avoidable if a different approach had been taken.
Conclusion
Ethical dilemmas are becoming more common in the changing health-care environment. More ques- tions are being raised, and fewer answers are avail- able. New guidelines need to be developed to assist in finding viable solutions to these questions. Tech- nology wields enormous power to alter the human organism and enable health-care providers to prolong human life, but economics may force the profession to rethink answers to questions such as,
“What is life versus what is living?” and “When is it okay to terminate human life?” Will society become the brave new world of Aldous Huxley?
Again and again the question is raised, “Who shall live, and who shall die?” What is your answer?
Study Questions
1. What is the difference between intrinsic and extrinsic values? Make a list of your intrinsic