Discuss about the Health Ethics for Encephalomyopathy Mitochondrial DNA.
The role of ethical practice in healthcare is to provide good patient care and reduce harm. Ethics guide the approaches and decisions that practitioners make when faced with difficult issues. However, as individuals nurses re faced with difficult situations that they have to make regardless of the ethical issues that exist thus creating condition that can be questioned on which healthcare issues that they issues to decide the action to take in a particular situation (Morrison, 2011). This essay analyses the ethical issues that revolve around the end-of-life care in case study four the case of Archie Simpson born with encephalomyopathy mitochondrial DNA depletion syndrome (MDDS) where the doctors and hospital administration felt the need for withdrawal of medication since it was not assisting the patient to recover.
The ethical principle of end-of-life care addresses the issues that healthcare professional are faced with during the end of life care of patients. Sometimes patients reach point in life where they can no longer respond to medication and the only thing that is left is waiting for them to die. Decision making around the issues of end of life care revolve around the need to prolong life with support of medicine or let the natural death process to take place by foregoing the treatment or life support (Chatterjee & Srinivasan, 2013). In the case of Archie Simpson the practitioners are faced with the ethical issues of withholding medication and allowing natural death.
Withholding of medication is an ethical dilemma that most practitioners struggle with. The interventions being administered on an individual vary from minor to complex life-sustaining strategies for the patient. The rationale adopted by the practitioner needs to be based on the burden that outweighs the benefits that the patient receives. In the case of Archie Simpson she has been on the medication for some time but the condition is not changing which makes the treatment a burden rather than a benefit. According to Karnik & Kanekar (2016) life prolonging therapies can sometimes increase suffering and decrease the quality of life of the patient. In the case study, it is indicated that the patient’s condition was becoming worse, an indicator that shows the inability of the medication to restore quality of life for the patient.
Another ethical dilemma that practitioners face is allowing natural death where the practitioner should not make any attempts to assist the patient thus leaving them to die naturally. This process focusses on allowing the patient to remain comfortable in the last moments before death but not interfering with the natural dying process. In the case of Simpson, the practitioner has to put strategies in place for making the patient comfortable but refrain from anything that interferes with the natural death process (Bhanji, 2013). The range of actions that apply towards this condition vary from patient to patient and depend on the state of the patient. In the case study, the doctors have suggested the application of this process since the patient is seen as not responding to any medication. Ethically the decision is to be discussed with the family members to psychologically prepare them on the approaches that will be taken. For example, in the case study, the parents are insisting of sustaining life with the hope that the research will come true yet they do not have the exact details of the study.
The ethical issues about the notions of human dignity, human rights, professional codes of ethics/conduct, relevant professional policies/legislation, and the principles of health care ethics
The issue of human rights revolves around being just and treating patients equally. Asgary & Ramin (2013) suggests that the principle of justice requires that practitioners use the relevant organizational and professional policies that revolve around the life of the patient. Every patient has the right to information and quality of care. Therefore the practitioners should do everything that is humanly possible to restore the life of the patient. On the other hand, the information on the progress of the patient and the challenges being faced should be disclosed to the patient and their family for easy decisions making in future. This means that the patient has every right to be involved in all clinical processes and where possible requested to make decisions where the care requires their input. The human rights perspective requires the right to the highest attainable standard of health that the patient can receive.
According to Mann, Gruskin, Grodin, & Annas (2009) the concept of human rights in patient care is therefore a theoretical and practical application of human rights principles to patient care. It guides the interactions of practitioners and patients in a universal context rather than a specific one. It means the approach taken by the practitioner when handling patient related issues should be informed by the universal principles that exist. Since patient care is a discrete and important aspect of the right to health, then its implications can be applied through the judicial process where the patient can sue for human rights if they are infringed in any way. The healthcare profession has policies and procedures that guide the approach that practitioners use in dealing with patients (Page, 2012). Practitioners are not allowed to make personal decisions but rather follow a certain code of ethics and professional principles when applying their professional knowledge to patient decisions. Errors and mistakes are not allowed since they infringe human rights and cause excessive harm to patients.
In addition to that, Beauchamp (2013) adds that the principle of beneficence requires that the practitioner strives to achieve good for the patient as much as possible. For example in the choice of allowing natural death, the patient needs comfortable conditions that allow the death process to be as comfortable as possible. By reducing suffering, the practitioner allows the patient to enjoy human dignity since this is the reason why people visit hospitals. It is important that every practitioner upholds the following dos; allowing the patient choice and control, communicating properly with the patient, allowing proper food and nutrition, pain management, improving personal hygiene and privacy (Christen, Ineichen, & Tanner, 2014). The practitioner should ensure that proper strategies are put in place to restore the dignity of the patient. This can improve the response to medication and improve quality of healthcare outcomes between the patient and the practitioner.
One issue that revolves around withdrawal of medication is autonomy and informed consent of the patient or the family. The decision to carry out this process should be approached through informing the patient or the family on the unresponsiveness of the medication and the need to withdraw the medication. Informed consent requires the decision to be made in a collaborative manner where the parents of the patient are given appropriate information to express their consent on the suggestion of the healthcare professional (Venneman, 2008). The doctor can use truth-telling as seen in the case study and information should only be limited based on the professional practices that apply to the existing circumstances. On the other hand, autonomy requires the patient or any other person that can make informed consent on their behalf to decide on whether the medication should be withheld or not. This decision allows the patient to assess the circumstances that revolve around the condition and decision on whether to discontinue the medication or not.
From the bioethics perspective, the issue of limiting or withdrawing medication where unanimous decisions have not been made in the case, then the approach should be based on rationing of medication where the approach for limited resources is used to justify the reason why the usual medication cannot be continued to a patient who is not responding the medication. The issue of limited resources is a justifiable decision that health practitioners can take in the situation where the decision of withdrawing medication between them and the patient is not working (Breault, 2011). Through good education to the family of the patient, the practitioner can make them understand the need for withdrawing medication rather than continued use despite the imminent signs of the patient being in the last stages of life. This process leads to an easy transition of the medication from medication to no medication rather than instant withdrawal of medication from the patient which can attract criticisms from parents.
Another strategy is the use of advance directives that allow patients and family members to be aware of the medical outcomes and the decisions that can be made even without the consent of the patient. The role of this directive is the ability to be aware of any possible outcomes and the decisions that need to be taken (Winzelberg, Hanson, & Tulsky, 2015). In most cases, the medication or therapy is applied to the patient on fifty-fifty grounds thus requiring them to make a decision should the medication not work in restoring the quality of life. Through this approach, medical practitioners can reduce the ethical dilemma of withdrawing medication and allowing natural death easy.
References
Asgary, J., & Ramin, E. (2013). New trends of short-term humanitarian medical volunteerism: professional and ethical considerations. Journal of Medical Ethics, 39, 625-631.
Beauchamp, J. (2013). Principles of Biomedical Ethics. Principles of Biomedical Ethics, 7.
Bhanji, S. M. (2013). Health Care Ethics. Journal of Clinical Research Bioethics, 4(1).
Breault, J. L. (2011). DNR, DNAR, or AND? Is language important? The Ochsner Journal, 11, 302-306.
Chatterjee, C., & Srinivasan, V. (2013). Ethical issues in health care sector in India. IIMB Management Review, 25(5).
Christen, M., Ineichen, C., & Tanner, C. (2014). How “moral” are the principles of biomedical ethics?-a cross-domain evalution of the common morality hypothesis. BMC Medical Ethics, 15(47).
Karnik, S., & Kanekar, A. (2016). Ethical Issues Surrounding End-of-Life Care: A Narrative Review. Healthcare, 4(2).
Mann, J., Gruskin, S., Grodin, M., & Annas, G. (2009). Health and human rights: A reader. New York: Routledge.
Morrison, E. (2011). Ethics in Health Administration. Sudbury: Jones and Bartett.
Page, K. (2012). The four principles: can they be measured and do they predict ethical decision making. B,C Medical Ethics, 13(10).
Venneman, S. (2008). ‘Allow Natural Death’ Versus ‘Do Not Resuscitate’: Three Words That Can Change A Life. Journal of Medical Ethics, 34(2).
Winzelberg, G., Hanson, L., & Tulsky, J. (2015). Beyond autonomy: diversifying end-of-life decision-making approaches to serve patients and families. Journal of American Geriatric Society, 53(6), 1046-1050.
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