Question :
This unit is based on study of Charlie Gard who was suffering from the disease encephalomyopathic mitochondrial DNA depletion syndrome (MDDS) this resulted in brain damage thus he was unable to make movement.
- Develop an understanding of moral and ethical concept pertaining to right, responsibility and power of care.
- Provide discussion of interpersonal and communication skill including, dignity and compassion.
- Reflect upon the personal values and their impact on practice, development and individual learning.
- Evaluate strategies for enhancing respect and dignity accorded to individual in care setting.
Answer :
INTRODUCTION
Medical professionals are responsible to provide the best care services to patients. They have to examine their situation well and accordingly have to provide them treatment. Present study is based on the case study of Charlie Gard. Charlie was suffering from encephalomyopathic mitochondrial DNA depletion syndrome (MDDS) (Norman and et.al, 2015). In initial phase he was perfect but later on, he was admitted to great Ormond street hospital (GOSH) for diagnosis. He was found with severe brain damages due to which he was unable to move his eyes and legs. Now, he is unable to take breath that is why he needs support of ventilator. Medical professionals of US have suggested NBT therapy to his parents. But doctors of GOSH have ruled out this treatment. Doctors have stated to switch off the ventilator and allow Charles to die with dignity because now, there is no solution for improving his health. But his parents have filed case in the court where judge has taken decision in the favour of hospital (Glasby, 2017).
Present study will discuss the ethical issues in Charles Gard's case. Furthermore, it will discuss ways to increase respect for Charles dignity. In addition, it will explain impact of this case on the values and development. Report will describe the ways through which such type of situations can be resolved effectively.
TASK 1
a) Ethical issues in Charlie Gard's case
Charles Gard is the 11 month old baby who has spent his entire life on the hospital bed. He is diagnosed by MDDS and doctors of GOSH who have found severe brain damages within Charles. Now, he is unable to move eyes and legs. He is living with the support of ventilator. Many other treatments such as NBT has been applied for improving his condition (Phelan and McCormack, 2016). After putting so many efforts to save the child, doctors have come to the conclusion that he is suffering from huge pain and now, they need to switch off his ventilator and allow to die with dignity. Ethical issues in the case of Charles Gard case are discussed as below:
Freedom is the major ethical issue that has been identified in the present case scenario. As family members of Charles wanted to improve the health of their child but doctors were forcing parents to switch off ventilator (Dominelli, 2017). When doctors have come to the conclusion that his condition cannot be improved, it is essential to allow him to die with dignity. It is very important in the health and social care sector that medical professionals give freedom to all patients and give rights to take their own decision. If individual is unable to make their decision then they cannot force anyone for the treatment or care procedure. As in the case of Charles, practitioner of GOSH directly said that Charles is suffering from severe pain and so, they have to switch off the ventilator and it would be a better option that will allow him to die with respect and dignity (Almgren, 2017). They were not ready to understand point of view of his parents. Parents of the patient have freedom to take their decision and if they are ready to spend money to make their child alive then doctors cannot force them to switch off the ventilator. This was major ethical issue in case where doctors were not giving freedom to parents of Charles. Autonomy is the main ethical principle that is applied in health and social care sector but in the present case, care users and parents have not got independence for getting services.
Another ethical issue in the present case is of not fulfilling responsibility by medical professionals (Gutiérrez and et.al, 2015). It is the ethical duty of medical professionals that to diagnose medical condition of the person carefully, they have to make their decision of giving treatment to patient. But in case of Charles, doctors have given NBT treatment to the Charles. Though GOSH has taken ethical permission from parents of Charles for attempting nucleoside therapy but it was the responsibility of doctors to make his parents aware regarding consequences of this therapy so that they can be made aware with consequences as well. But, in present case, medical professionals have just informed parents of child regarding treatment (Boris and Klein, 2015).
One of the most effective ethical principles that is applied in health and social care sector is non-maleflcence. It means that medical professionals have to work in such a manner that no individual will get harmed. They have to refrain from providing ineffective treatment. There are many therapies that sometimes create serious risk for the person. The major ethical issue in case of Charles is that benefits outweigh burdens. Practitioners have to avoid ineffective treatment that is creating risk to the patients (Black, Dobbs and Young, 2015). But, in the present case, doctors have applied NBT therapy due to which muscles and other organs of Charles got badly affected. This was another ethical issue in this case.
Respect and justice are other ethical concerns in the health and social care sector. It is very important for the medical professionals to treat each patient fairly and give them respect as well (Jütten, 2017). But in case of Charles, doctors were forcing parents to switch off the ventilator. This was against justice and it was not the fair behaviour of care providers. Court has also given statement in the favour of hospital (Tol and et.al, 2015).
b) Communication held here
In the present case of Charles Gard, medical professionals have not communicated with the family members of Charles properly. They have not used positive language with the close members due to which parents were unable to understand the situation of person. There was informal communication between parents and medical professionals. This has created complicated situation in the case because both were unable to understand point of view of each others (The Importance of Patient Dignity in Care at the End of Life, 2016). In such condition trust between both was getting affected. In order to improve communication between involved persons, it is very important for the practitioners of GOSH that to take care of language or words use in the interaction. There needs to be clear and formal interaction. This may build understanding of the person and can help the individual in making sound decision. Medical professional are required to look at the cultural aspects of individuals and accordingly they have to communicate with them (Dominelli, 2017). Nurses have to clearly listen view point of family members so that they can take clinical decision for Charles accordingly. This would be beneficial in order to improve condition of the person to great extent and minimizing confusions.
c) Ways to improve respect for Charlie Gard dignity
Dignity plays a significant role in the life of human being. It is essential for the medical professionals to maintain and enhance dignity as well as respect of others. They have to take care of the dignity of patients so that individual will feel confident and take treatment properly. It is considered as an essential human right framework. Medical professionals can improve the dignity and respect for his dignity by taking support of positive tones of care and listening viewpoints of family of Charles carefully (Boris and Klein, 2015). It is essential for the hospital staff members to give positive response to the parents and have to discuss regarding the situation of Charles in a positive way. They cannot directly say to switch off the ventilator because medical situation of Charles cannot be improved. They have to use appropriate words and have to make them understand regarding treatment procedure that they have applied and situation that might occur if Charles have to live for longer duration on ventilator. By this way, parents will be able to understand situation of Charles and they will be agreed with the decision of court and hospital (Glasby, 2017). Furthermore, privacy, effective communication and empathy are other ways through which dignity of Charles can be improved and it will help in enhancing the respect for Charles Gard's dignity (Norman and et.al, 2015). With conducting proper interaction medical professional can gain trust and loyalty of parents and then people will believe on decision taken by the doctors. As in the case doctors have taken ethical permission for the therapy but they have not disclosed consequences of this therapy. This communication gap has created issue because due to this therapy condition of Charles have got worst. Due to this family members have lost trust from hospitals and they wanted to go US. If nurses and other practitioner make its clear at the initial phase consequence of the treatment then parents will defiantly thing before saying yes for the therapy. This communication can be resolved by effective coordination.
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TASK 2
a) Impact of Charlie Gard on values and development
Being a medical professional in the health and social care sector, it is important for me to take care of patients and put hard efforts to improve medical condition of the person. While working on this case, I have learned the ethical aspects that are essential to be followed by practitioner. If these ethical principles have been breached then it may create consequences for the care providers (Almgren, 2017). My family has developed nurturing personality within me and through this case, I have understood the importance of ethical decision in critical situations. I have developed my knowledge regarding how to deal in such kind of situations. It has impact on my values which has shaped and supported me in taking right decision in complicated situations. I have developed my knowledge about code of ethics in nursing practices. These can support the person in providing quality care to users. I also believe that it is not right to disrespect any individual and harm their dignity. Each person has freedom to take their own decision; doctors cannot force any person to take particular treatment (Tol and et.al, 2015). I feel strong and now, I always try to create a positive environment for the patients. Furthermore, I have developed my understanding about ethical theories and principles.
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b) Ways to deal with similar situation
If the same situation get arisen in future in front of me then I would be discuss the problem with family members of patients carefully. I will make them realise with the sever condition of the person. As in the case of Charles he was suffering from huge pain and if was permanently on bed. I will make them aware that this type of condition can be risky for the patients and if the person live on ventilator then individual has to gone through from severe pain. In such condition family members will be able to understand concern of mine and they will accept the solution that would be provided by medical professional (The Importance of Patient Dignity in Care at the End of Life, 2016). It is very important for the practitioners that to use positive language and communicate each thing with the family members properly. If there is communication gap then it may create conflict situation. I will take care of emotional break down of the parents and accordingly use my language so that they may take right decision for the care user (Phelan and McCormack, 2016). Furthermore, I will follow ethical principle of health and social care sector. I will take care of dignity of the person and will give them respect. I will not hurt feeling of any person. This will help me in gaining trust of close members of the person.
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