I need to identify an ethical issue from a volunteering experience in a hospital and:
1) Identify 10 relevant significant peer reviewed papers
2) Do a critical analysis of each paper
3) Synthesizing their various ideas into a coherent discussion/argument.
(In addition to the 10 papers, other sources may be used if necessary)
I will then use these ideas and relate them to the specific case I have chosen: a man with brain cancer. He has about a month to live, he is alert and able to communicate but as the cancer has spread his personality has changed from a previous visit a few weeks ago. He appears confused and incoherent at times. He has no family and lives alone at home. He's refusing to be admitted to a hospital to receive the end of life care he requires.
The broader topic I would like to write about is his mental capacity to make decisions about his treatment, give consent, etc. Under what circumstances would he be deemed to be able to act in his best interests, who makes the calls if he has no immediate family, what are the responsibilities and limitations of his doctors?
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Part 1: Peer-Reviewed Papers
Author/s:Schubart, J., Kinzie, M., & Faraze, E.
Title:Caring for the brain tumor patient: Family caregiver burden and unmet needs
Particulars: Journal of Neuro-Oncology, 2008 January; 10(1): 61-72.
This particular study focuses on the difficulty of caring for individuals who have brain tumor. Patients suffering from the disease face a rapid onset and progression of brain tumor whereby there are cognitive and behavioral changes and for those caring for them, especially their family, they must cope with the uncertainty of prognosis. The emotional, physical and financial burden of caring for a brain tumor patient are massive. This particular paper looks into the burdens and needs of such caregivers. They studied the experience of 25 families who are burdened with caring for an adult brain tumor patient whose trajectories range from crisis, chronic, and terminal phases. They reported that, "the family caregivers in this study provided extraordinary uncompensated care involving significant amounts of time and energy for months or years and requiring the performance of tasks that were often physically, emotionally, socially, or financially demanding." Their respondents often feel untrained, ill-prepared and at a loss to cope. Physicians, it appears are focused on the needs of the patient and are ill-prepared to help their caregivers cope.
Title: Clinical trials in gene therapy: Ethics of informed consent and the future of experimental medicine
Particulars: Current Opinion in Molecular Therapeutics, 2008 October; 10(5): 428-430.
In this particular study, Lowenstein looked into the clinical trials in gene therapy - how the study was conducted, how samples were selected and collected - to look into how informed consent was practised as an ethical consideration. He did so to find out how the conduct of the researchers in the study will impact the future of experimental medicine. In this paper, Lowenstein discussed the 'serious ethical issues' that the study had to confront. He harkens back to previous studies which had massive ethical impact (i.e. Parkinson's clinical trial and LCA clinical trial) in that while the studies were ethically sound, the limitations of the application of the results mean that those who can benefit from it are unable to. In this study, the importance the field gives to informed consent is highlighted and why this is the most important consideration first and foremost when it comes to studies and undertakings in science that involve human participants.
Author/s: Corrigan, O.
Title:Empty ethics: the problem with informed consent.
Particulars: Sociology of Health & Illness, 2003 Nov;25(7):768-92.
In this particular study, the problem of informed consent is explored by the author who proposes that as a tool, it is seen as an "ethical panacea, a tool to counter autocratic and paternalistic medical practices." The author however acknowledges that the matter is far from settled as informed consent is actively being debated where opinions of experts in the field as well as in legal and social matters are constricted and polarised. Corrigan presents that the debate is polarised as it is "centering on the right of individuals to be fully informed and to freely choose versus an autocratic, paternalistic practice that negates individual choice." Essentially however, Corrigan proposes that what results is reductive/deductive reasoning which is often utilised to resolve debates, especially in individual cases. For Corrigan, this is 'empty ethics' as the process of consent is not driven by positions seen as 'right' wherein the individual has full control of that position - it is subject to social processes that often have nothing to do with ethical positions.
Author/s: Sizoo, E., Braam, L., Postma, T., Pasman, H.R., Hiemans, J., Klein, M., Rejvenald, J. & Taphoorn, M.
Title:Symptoms and problems in the end-of-life phase of high-grade glioma patients
Particulars: Neuro-Oncology, (2010) 12 (11): 1162-1166.
This particular Oxford-study looks at the symptoms and problems of patients of high-grade glioma who are at the end of life phase. What is unique about this study is that it looked at the particular practice in the Netherlands in the case of patients with high-grade glioma (HGG) primarily because it is legal and social practice in the country that "when the patient's condition declines and no further tumor treatment seems realistic, patients in the Netherlands are often referred to a primary care physician for end-of-life care." The purpose of this is to prolong life as much as possible to prevent deterioration of the quality of life, where the deterioration is controlled. The authors attest that this practice has not been fully explored and this is what the study set out to do. 55 cases were studied retrospectively and the symptoms and problems of the patients were studied and explored according to that identified by the primary care physician.
Author/s: The General Medical Council
Title: End of Life Treatment & Care: Good Practice in Decision Making
Particulars: © Copyright General Medical Council 2012 (online)
This paper has been prepared by the expert staff of the General Medical Council (GMC) a charity in the United Kingdom whose main aim is to regulate doctors for the purpose of ensuring good medical practice. Essentially, this paper is in the 'draft stages' whereby doctors and expert partners are still reviewing the presented tenets of the paper. The paper aims to provide guidance to ...
The expert examines patient's mental capacity to make decisions. A critical analysis is provided.