Financial Insecurity versus Maximizing Chance of SurvivalAditi JoshiUniversity of PittsburghI confirm that the work presented in this paper is my own, without content from other individuals or sources unless properly cited.ScenarioYou are a nurse working on a pediatric oncology floor with a 14-year-old patient named Sarah. Sarah is very mature for her age but still loves spending time with her friends and playing basketball. However, Sarah was recently diagnosed with Acute Myeloid Leukemia (AML). So far, the treatments have been unsuccessful and her prognosis is poor. Sarah, her family, and the medical team have begun to lose hope. Yesterday, the Chief Oncologist, Dr. Jessica Greene, learned of a clinical trial that may help Sarah. Sarah and her family were excited when they heard about the clinical trial, but their hope begun to fade when they learned the details. The closest hospital involved in the trial is in St. Louis, approximately 600 miles away from home. Also, the study protocol involves spending up to two months as an in-patient. This means Sarah would have to spend 2 months in St. Louis with one of her parents. Sarah’s mom, Rachel, works part time and is the primary caregiver for her three younger brothers and one younger sister. Sarah’s Dad, Tim, works full time and spends at least 1 week a month traveling for work. One parent would have to take a leave of absence from work to be with Sarah during the research study and the other one would have to watch the children while still working. Unfortunately, there are no other family members who can help out. Sarah knows that her family’s finances are tight because she heard her parents arguing about money the other day. The clinical trial may be Sarah’s best chance for beating the cancer, but her involvement in the trial would negatively affect the rest of her family. It will cause serious financial hardship due to staying in St. Louis for two months, loss of some income, and potentially having to pay for daycare and babysitters. Having one parent away from the other children for two months could negative impact their well-being. Also, the research study is a randomized trial and Sarah may not even receive the investigational drug. Even if she gets the drug, its success is not guaranteed. Rachel and Tim desperately what want what is best for Sarah but are afraid of the consequences for the family as a whole. They ask for you and the medical team’s help in making this difficult decision.Identify the Problem and Whether an Ethical Dilemma ExistsThe patient has recently been diagnosed with AML and all the treatments administered have been rendered unsuccessful leading to a poor prognosis. A clinical trial in St. Louis has emerged and the Chief Oncologist suggests this as an alternative treatment method. It is a randomized trial where its not guaranteed if whether she will get the interventional drug and even if she does get it, the success of it is undetermined. The main concern of the patient’s family is to whether they should enroll Sarah in the trial since that would cause financial stress and affect family dynamics emotionally and psychologically. Gather Relevant FactsThe patient has been diagnosed with stage III AML under the classification of Monocytic Leukemia. Due to the late detection of AML, the treatments have been unsuccessful and the outcome looks incredibly poor. She has been put on aggressive chemotherapy but it causes severe nausea and vomiting, difficulty breathing and constipation. The patient wants to stop treatment but she wants to find every possible way to increase her chance of survival (Lorusso et al., 2017; Taga, T., Tomizawa, D., Takahashi, H., & Adachi, S., 2016)Chief Oncologist, Dr Jessica Greene, has found a clinical trial that could potentially improve her prognosis. The location of the trial is far away and will cost significant amounts of money. The father just got hired at a small start-up company after being laid-off from his previous job. His income isn’t as high compared to his last job. The mother has a part-time job as a retail manager and has to take care of the other children. Two days ago, the patient witnessed her parents have a heated argument about the financial constraints that the family would face. She is only 14 years old so she is not legally competent so her parents will have to act as her de-facto decision makers. She confides in you, the nurse, that she doesn’t want to stress her family out and wants them to have enough money even if its means forgoing treatment for her AML. Financial burden is a common problem that families face who have to provide money for pediatric cancer treatment. According to a study presented in the Journal of Clinical Oncology, there is evidence that childhood cancer patients and their families have to pay a higher amount out-of-pocket that could have detrimental effects on health-seeking behavior and health outcomes (Nipp et al., 2017). Their concern with money is valid since the parents have four dependents including Sarah that they have to take care of. Financial scarcity can cause them to look away from a potentially helpful solution. Identify Methods of Ethical JustificationThe theory of utilitarianism can be applied to this dilemma because the family can focus on the “best consequence” for the greatest good for the greatest number of people. Based on the family situation, involving Sarah in the trial might cause more harm than benefit. You can support the decision of the parents to not enroll Sarah in the trial as she might not even get the drug and success is not guaranteed. The family will face hardships in terms of finance and dynamics and to not have the drug work or not get it period while enduring substantial loss of income is not an ideal situation to be in. However, the theory of deontology can be applied to the dilemma as the parents’ highest duty/obligation is to protect their children and try to figure out as many solutions as possible so their children outlive them as expected. Even though the trial does not have a determined high success rate and the allocation of the interventional drug is also not concrete, if she has the chance to live, then that treatment method should be chosen. As a nurse, you can support the parents’ decision to enroll their child in the trial. Clarify Relevant Values, Rights, and DutiesAs a patient, Sarah has the necessary patient rights such as receiving important information regarding her treatment, having her needs tended to, and privacy and confidentiality. She values wanting to be a normal 14-year old but she doesn’t want to stress her parents and siblings out. Sarah does not want to add financial constraints on top of all the worry they have to face with her treatments. Her duty as a patient is to as a not legally competent individual is to follow the rules in terms of who makes the final decisions and follow necessary protocols. As Sarah’s parents, they have obligations to their other children as they have to the Sarah so they have to find the balance between catering their attention and money to the patient and their children back home. Their worries and values align similarly to Sarah’s. Their duty is to make the reasonable decision in regards to this problem ensuring that Sarah’s voice is heard and incorporated in the decision-making process. As Sarah’s healthcare team, their duty and right is to provide as many treatment options for the family and the patient so the chance of survival improves. The healthcare team has the duty to find reasonable compromises to their dilemma. They should value parents’ and patient’s values and rights and keep those in mind while trying to come up with achievable solutions without causing harm to either side. Their duty is to provide the best care possible using the patient-centered care model. As Sarah’s nurse, you are obligated to advocate the patient’s rights and encourage including her when discussing treatment options as she is under 18. You should value the opinions of the parents’, patient’s, and the healthcare team’s. You should be empathetic and be ethically transparent with the dilemma and make sure the family has all the information that they need. Identify Guidelines of Nursing/Professional Codes of EthicsIn the American Nurses Association (ANA) Code of Ethics, Provision 3.2 states, “The patient should receive sufficient information that helps them make an informed decision, adequate comprehension of information and know how to discontinue participation in research without penalty.” If the patient decides to enroll in the clinical trial, her family and herself should know the risks versus benefit ratio to make the necessary decision in how to navigate the trial (American Nurses Association, 2015). However, enrollment in the trial will lead to financial scarcity. In order to aid with that problem, in the International Council of Nurses (ICN) Code of Ethics, Code Number One – Nurses and People states, that the healthcare team should provide access to different interdisciplinary resources to make situation easier to handle and potentially create a reasonable compromise (International Council of Nurses, 2012). Another code, that supports the notion stated by the ICN code is the Oncology Nursing Certification Corporation Code of Ethics for Nurses (ONCC) which supports the idea that the patient should receive the necessary information about the interventional drug and the risks she might face if she receives it (Oncology Nursing Certification Corporation, 2019). Identify and Use Appropriate Interdisciplinary ResourcesFirst, an ethics committee should be consulted as they will offer assistance in addressing ethical issues that have arisen in Sarah’s care and facilitate sound decision making that respects participants’ values, concerns, and interests. They would serve as advisors and educators rather than decision makers. They utilize a holistic approach and give advice based on benefit versus burden. It is their duty to ensure that all stakeholders have timely access to the committee’s services for facilitating decision making in nonemergent situations and as feasible for urgent consultations. Second, social care workers should be contacted as they refer clients to social services as necessary like community programs to aid in recovering from any emotional/psychological stress and to provide available services such as housing options, legal aid, financial assistance, and job opportunities. Lastly, a family therapist should be appointed to discuss emotional issues and provide treatment for psychological conflicts and how to better handle the whole situation in terms of coping strategies for the family if they decide to get involved in the trial. Identify and Prioritize Alternative Actions/OptionsThe first option is to support the decision to enroll Sarah in the trial as the parents feel it is their highest duty to ensure that their child should have the right to extend her chance of survival as supported by the deontology theory. She could get the drug and potentially have an improved prognosis but if she doesn’t, she will suffer from no harmful consequences. Additionally, with the healthcare professional team, you can advise the family in terms of what interdisciplinary resources would be useful. Conversely, you can support the decision of the parents to not enroll Sarah in the trial as they would prioritize the family as a whole as supported by the utilitarianism theory. The neglect towards the other children, the separation of the family, not getting the interventional drug, financial stress and facing emotional and psychological struggle makes for a poor bargain. Select a Morally Justified Action/OptionYou believe the first choice is the best option and morally justified. The patient’s right to having access to every possible treatment to improve her prognosis is the main priority. With the healthcare team, you will provide with the necessary interdisciplinary resources such as a family therapist, an ethics committee, and a social worker would greatly alleviate the concerns the patient and her family have. The family and the patient will be thoroughly informed about the risk and benefits of enrolling into the trial and how to withdraw from the trial without facing any consequences. ReferencesAmerican Nurses Association. (2015). Provision 3. (6th Ed.), Code of ethics for nurses with interpretive statements (pp. 9-10). Maryland: American Nurses Association. International Council of Nurses. (2012). Code #1: Nurses and People. (4th Ed.), The ICN code of ethics for nurses. Geneva: International Council of Nurses.Lorusso, D., Bria, E., Costantini, A., Di Maio, M., Rosti, G., & Mancuso, A. (2017). Patients’ perception of chemotherapy side effects: Expectations, doctor–patient communication and impact on quality of life–An Italian survey. European journal of cancer care, 26(2), e12618. https://doi.org/10.1111/ecc.12618. *Nipp, R.D., Kirchhoff, A.C., Fair, D., Rebin, J., Hyland, K.A., Kuhlthau, K., Perez, G.K., …Park, E.R. (2017). Financial burden in survivors of childhood cancer: a report from the childhood cancer survivor study. Journal of Clinical Oncology, 35(30): 3474–3481. doi:10.1200/JCO.2016.71.7066. Oncology Nursing Certification Corporation. (2019). Code of Ethics Policy. Retrieved from https://www.oncc.org/code-ethics-policy. Taga, T., Tomizawa, D., Takahashi, H., & Adachi, S. (2016). Acute myeloid leukemia in children: Current status and future directions. Pediatrics International, 58(2), 71-80. https://doi.org/10.1111/ped.12865.
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