Overview of the Case Study and Ethical Principals
Question:
Discuss About The Qualitative Research In Nursing Healthcare?
It is long known that periodic institution of palliative care alleviates distressing symptoms of the terminal stage of the disease (Morton et al., 2017). This helps in the overall improvement of the quality of remaining life. However, the healthcare professionals who are under palliative care team or providing care to some incurable disease face numerous ethical conflicts. These conflicts are at times faced with the patient’s family members or directly with the patient (if an adult) and with the prevailing medical code of ethics (Morton et al., 2017). The following essay aims to critically analyse the ethical concerns which are raised in the given case study of a new born baby Archie who has unfortunately born with encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). At the end, the essay attempts to shade light on certain recommendation for professional practice based on code of ethical conduct.
The first ethical issue that is raised by the series events is the case study is the ethical principal of autonomy. According to the ethical principal of autonomy, it the right of an individual to take their own health related decision. According to this principal, it is the right of the healthcare professionals to respect the autonomy of their patients via creating an environment that favours autonomous choice (Bastable, 2003).
The second ethical principal bridged in this case is veracity. The ethical principle of veracity means telling the truth and this in turn is linked with the informed decision making and informed consent. This again coincides with the ethical principle of autonomy. A healthcare consumer or their carers can only make decision in relation to the health related conditions when they are completely aware about the actual scenario of the present and along with the future outcomes (Bastable, 2003).
Third ethical principal that is bridged in this case is the ethical principle of non-malfeasance. Non-malfeasance means “do no harm” or “avoidance of harm” and this gain coincides with the ethical principle of beneficence which means benefit for the others. In modern times, the ethical principle of non-malfeasance extends in order to make sure that the health care professionals are doing no harm in beneficent act of technology to stretch the life or using experimental treatments that have not yet being test or are still on clinical trials (Bastable, 2003).
The forth and the last ethical principle that has been raised in this case study is ethical principle of justice. This principle refers to fair and equal distribution of resources regardless of who they are and what they have contributed and this again coincides with the ethical principal of utilitarianism which supports what is best for the majority of the people (Bastable, 2003).
Archie is a new born baby and hence his parents are the sole decision makers on behalf of him. Here the principle of autonomy was bridged as Archie’s parents were not allowed to make their own decisions or rather the healthcare professionals tried to impose their personal decision upon Archie’s parents. Moreover, the doctors failed to create an autonomous environment where Archie’s parents can take part in informed decision making. The attempt to create an autonomous environment was done by Mandy. It is she who informed Archie’s parents that there are ongoing trials happening in US in the field of encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). Her statement has scientific basis because the reports published by Rahman (2015), highlighted evidence against the emerging therapies in the key areas of the diseases and all these therapies are found to provide promising results in the research trials. This act of Mandy goes in favour of the NMBA (Nursing and Midwifery Board of Australia) Code of Ethics (2017) which provide immense value towards quality nursing for all the people and informed decision making.
Ethical Principle of Autonomy
In this case study, the principle of veracity is not bridged as the health care professionals have rightly informed the parents of Archie about the expected outcome of the disease. Their claim goes in sync with the findings of the MDDS. According to the reports published by Komulainen et al. (2015), MDDS cause structural alteration of the endoplasmic reticulum along with secondary mitochondrial change leading to muscular dystrophy proving to be exponentially fatal. According to Holloway and Galvin (2016), it is important to tell the truth to the patient and their family because they have rights to know the actual scenario in order to act accordingly to take mental preparation. This again goes with the ethical principle of autonomy which promotes informed decision making. Moreover, according to the Australian Government Department of Health (2017), patient education is the first priority in palliative care. However, the veracity goes against the principle of non-malfeasance and beneficence because knowing the bitter truth may harm the mental well-being of the patients and their carers (Holloway & Galvin, 2016).
However, the disrupting the mental equilibrium of the Archie’s parents might have possible if the doctors have given them a ray of hope via informing them about the ongoing trials in US to frame the therapy plan for MDDS. According to Holloway and Galvin (2016), giving a ray of hope enables the patients and their family members to nurture certain degree of positive hope and this in turn help to manage the crisis situation more effectively.
Hospital administrators were urging the physicians at the neo-natal intensive care unit (NICU) to withdraw the palliative treatment of Archie because they are of the opinion that there urgent requirement of bed in the NICU for other infants. This urge of the hospital administrators goes in favour of the ethical principle of beneficence which upholds benefits for the majority of people (Mikesell, Bromley & Khodyakov, 2013). Archie at present is in ventilation and according to the NICU physicians there is no possibility for Archie to survive. In order to deliver good to the majority of the other awaiting infants they have opted the release of Archie. However, this decision goes against the ethical principle of non-malfeasance as denial of palliative care to Archie is causing harm as it will lead Archie, the new born baby to suffer more from the symptoms of MDDS (Mikesell, Bromley & Khodyakov, 2013). According to Komulainen et al., (2015), palliative symptoms of MDDS are unbearable among the paediatric patients.
The decision of the hospital management to release Archie for the sake of other awaiting infants for NICU goes against the ethical principle of justice this vouches for fair and equal distribution of resources. Here the justice though going fair for the waiting patients but doing unfair to Archie as he is unable to enjoy equal distribution of resources. This again goes with the NMBA Code of Ethics of Nurses (2017), nurses must value quality nursing for all the people and in a ethically competent manner. On contrary, the decision taken by the hospital management goes in favour of the ethical principle of utilitarianism while vouch for the benefit for the majority of the people (Mikesell, Bromley & Khodyakov, 2013).
Ethical Principle of Veracity
According to NMBA code of professional conduct (2017), it is the duty of the nurse to provide honest, impartial and accurate information in the domain of nursing care and health care products. So Mandy while providing advice for a second opinion, it would be her duty to give accurate information regarding if there are any US health care organisation providing therapies for MDDS. Notifying them about the early-stage trials will not help Archie’s parents to derive any suitable solution for terminally ill baby. Moreover, it would be the duty for the NICU doctors to provide a comprehensive care to Archie in order to give relief to the baby from the pain. If there is practically no cure for Archie then without providing curing treatment plan, the healthcare professionals must provide palliative care for Archie. According to Government of Australia (2017) a palliative care physicians must indulge in active conversation in order to make the patients or their family of carers to know about their thoughts and wishes. It will only be through these conversations that the healthcare professionals can communicate and make the family members to understand the consequences. Here the doctors have only narrated their medical understandings and scientific figures but indulging in an effective conversation with Archie’s parents will help the healthcare professionals to emotionally connect with Archie’s parents and then take required steps (Australian Department of Health, 2017). If Archie’s parents are unwilling to accept the truth then it would be the duty of the healthcare professional to discuss the issue with other family members of Archie so that they can understand the situation practically and help parents of Archie to accept the same (Morton et al., 2017).
Thus from the above discussion, it can be concluded that, the main ethical issues raised in this case study is autonomy, beneficence, non-maleficence, veracity, justice and utilitarianism. All these ethical issues have contrasting logic and hence it would be the duty of the health care professional to indulge into effective communication with the parents of Archie in order to draft an informed and ethically approved plan of care for Archie.
References
Australian Government Department of Health. (2017) Palliative care and planning for end-of-life care. Retrieved from: https://www.health.gov.au/internet/main/publishing.nsf/content/palliative-care-and-end-of-life-care
Bastable, S. B. (2003). Nurse as educator: Principles of teaching and learning for nursing practice. Jones & Bartlett Learning.
Holloway, I., & Galvin, K. (2016). Qualitative research in nursing and healthcare. John Wiley & Sons.
Komulainen, T., Hautakangas, M. R., Hinttala, R., Pakanen, S., Vähäsarja, V., Lehenkari, P., … & Tuominen, H. (2015). Mitochondrial DNA depletion and deletions in paediatric patients with neuromuscular diseases: novel phenotypes. In JIMD Reports, Volume 23 (pp. 91-100). Springer, Berlin, Heidelberg.
Mikesell, L., Bromley, E., & Khodyakov, D. (2013). Ethical community-engaged research: a literature review. American journal of public health, 103(12), e7-e14.
Morton, P. G., Fontaine, D., Hudak, C. M., & Gallo, B. M. (2017). Critical care nursing: a holistic approach (p. 1056). Lippincott Williams & Wilkins.
Nursing and Midwifery Board of Australia. (2017). Code of ethics for Nurses in Australia. Retrieved from: https://www.nursingmidwiferyboard.gov.au/News/2017-09-28-new-codes-of-conduct.aspx
Rahman, S. (2015). Emerging aspects of treatment in mitochondrial disorders. Journal of inherited metabolic disease, 38(4), 641-653.
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