Category: Bioethics

Write 100 word response to the material below
Elizabeth Bouvia: In the 1980s, Elizabeth Bouvia’s lawsuit set a example for patient rights and medical ethics. Bouvia, someone with cerebral palsy and is paralyzed, battled in court to be allowed to decline life-sustaining care and, in the end, to starve to death. Her relocation to Los Angeles produced a major legal precedent protecting patients’ rights to decide how they are treated, regardless of their circumstances or desires, despite early court defeats. The case brought to light the ethical complications of end-of-life decisions in the face of severe disadvantage and triggered arguments regarding autonomy in medical decision-making. Bouvia’s determination and the resulting legal outcomes had a significant impact on the laws and regulations pertaining to patients’ rights and treatment preferences. 
Brittany Mayard: The prosecution of Barbara Mancini in Pennsylvania for encouraging her dying father to take his own life brings to light concerns about legal ethics and end-of-life care. Joe Yourshaw was arrested after he asked Mancini for morphine because he was in excruciating pain. The case became more complex by Pennsylvania’s absence of “death with dignity” rules, even if the charges were dropped for lack of proof. The case raised awareness of assisted suicide laws, the inadequate care provided to patients near the end of their lives, and the legal risks faced by caretakers. It had a big impact on legislative discussions and public awareness of patients’ rights and caregivers’ obligations. 
Nancy Cruzan: The Nancy Cruzan case, which focused on patient autonomy and the right-to-die in the United States, occurred in the late 1980s and early 1990s. After a vehicle accident left Nancy Cruzan in a prolonged mental state, her family attempted to stop her life-sustaining therapy. In 1990, the United States Supreme Court decided that states had the right to demand clear evidence of a patient’s desires for life-sustaining care. This decision had a major effect on public debate, medical ethics, patient rights, and legislation across the country by establishing an example for the level of evidence required for families to make end-of-life decisions for incompetent patients. 
Karen Ann Quinlan: Part of the American right-to-die movement originated with Karen Ann Quinlan’s 1970s case. Her parents thought it was in her best interests to take her off life support when she went into a chronic mental state. The 1976 decision by the New Jersey Supreme Court, citing her parents’ right to privacy, allowed them to remove her life support. Since Quinlan survived after being removed, it created an example in law for people to refuse medical treatment in situations where there is little chance of recovery. The case became a turning point in American medical ethics and law, impacting national discourse, legislation, and medical practices around patient rights and caregiver obligations. 
Teri Schiavo: In the American right-to-die argument, the Terri Schiavo case became a landmark. Terri Schiavo, 26, experienced cardiac arrest in 1990 and went into a permanent vegetative state. Her husband Michael Schiavo wanted to take out her feeding tube, and her parents rejected this choice, which led to a complex legal struggle. The courts finally agreed with Michael in spite of many court decisions and legislative measures, such as “Terri’s Law” in Florida. After Terri’s feeding tube was taken out, she passed away on March 31, 2005. The case brought attention to the importance of precise advanced healthcare directives and generated a national conversation about patient rights and end-of-life ethics. 
Larry McAfee: In the discussion surrounding assisted suicide, Larry McAfee’s case from the 1990s was crucial. Upon getting an ALS diagnosis, McAfee requested authorization from a doctor to end his life with medical assistance. This led to a heated court dispute and a public discussion over end-of-life rights. For terminally sick patients, their relatives, and medical professionals, his situation brought to light the moral difficulties they face. Despite legal challenges, McAfee’s work influenced public opinion and laws on terminally ill patients’ rights to make decisions about how to face death, which was an important turning point in the conversation about patient autonomy and end-of-life care. 
Question 2: The situations of Terri Schiavo, Elizabeth Bouvia, Larry McAfee, Nancy Cruzan, Karen Ann Quinlan, and Brittney Maynard all contain complex ethical concepts that influence choices about patient autonomy and end-of-life treatment. The common topic throughout these kinds of situations is autonomy, or the ability of individuals to make decisions regarding their own bodies and lives. Brittney Maynard, for example, exercised her autonomy when she decided to end her life with medical assistance rather than face the pain and suffering of terminal brain cancer. In a comparable way, Elizabeth Bouvia maintained her autonomy by claiming freedom to decline life-sustaining medical care despite physical limitations. In situations like Nancy Cruzan, decisions regarding the removal of life support were made based on what was judged to be best for the patient’s well-being. This shows beneficence, the idea of acting in the patient’s best interest. In situations like Karen Ann Quinlan and Larry McAfee, where decisions about withholding treatment were balanced against the possible harm caused by extended suffering, non-maleficence, or the responsibility to do no harm, is considered. Finally, justice—which guarantees equal and fair treatment—plays a part in these circumstances by affecting the legal choices made regarding the rights of patients and their access to end-of-life options. These ethical principles continue to influence discussions and laws related to healthcare choices, establishing a balance between the rights of the individual and the obligations of society in situations of life and death. 
Question 3: In Connecticut, the common law concepts of informed consent and patient autonomy guarantee an individual’s freedom to decline life-sustaining treatment, including food and drink. This recognition reflects a commitment to respecting individual preferences and autonomy in healthcare decisions by enabling people to make decisions about their own medical treatment. However, there is currently no law in Connecticut that permits euthanasia or assisted suicide, making it unlawful to help someone end their life. There are many different ethical issues with these laws. Particularly in situations involving terminal disease or fatal disorders, advocates of the right to reject treatment feel that it upholds individual autonomy and gives patients the freedom to make decisions consistent with their values and beliefs. On the other hand, discussions surrounding assisted suicide raise difficult moral issues, such as those relating to patient welfare, the possibility of improper use or pressure, the influence on medical practice, and the impact on society norms. Therefore, balancing the principles of autonomy, beneficence, non-maleficence, and justice while taking into account wider implications for healthcare ethics and policy is important in determining the appropriateness and ethical implications of Connecticut’s laws. 

ethics and medicine and pharmaceutical policy – Position paper
see attachments
“More funding should be directed to developing medicines to help those with rare diseases”
Word count: 2500 words +/- 10%
Referencing format: Vancouver.
Task:
Write a position paper of the following thesis statement:
“More funding should be directed to developing medicines to help those with rare diseases”
Specify what your position is, put forward the strongest arguments for your position, and defend against the strongest arguments against your position.
position to defend: support
Support the arguments position based on utilitarian or deontological perspectives and link to ethical principles if appropriate. Indicate page where the idea is extracted from . example –
“……..” (1) [p.23]
See some papers below for references + add few more
Abstract [~200 words]
Provide a summary of your paper, including your conclusion.
Introduction [~350 words]
 Provide background to the topic. Why is this an important issue to explore? Provide relevant context.
 Define your terms [e.g. what do you mean by continuing education, or coverage with evidence development? Use references to show how these terms have been defined].
 Give concrete examples of what you are talking about.
 State what you aim to do in this position paper [e.g. In this position paper, I will argue for
the importance of …. ]
Argument(s) supporting your position [~1000 words] [Give this section an appropriate title; don’t say “arguments supporting my position”]
 Develop your arguments in a logical and cohesive way. You can build upon the arguments you presented in your first assignment.
Defeat competing argument(s) [~800 words] [Again give this section an appropriate title]
 Identify one or two of the strongest argument/s against the position you have decided to defend. Describe the argument/s and give some justification for why these are the strongest arguments against your case.
 Explain why this/these counter-argument/s are not as strong as the arguments in support of your position.
Discussion/Conclusion [~150 words]
 Briefly describe state your position and summarise why you take this stance.
 Don’t provide new information in your Conclusion
References [Doesn’t count towards the word limit]
Support your argument with references and build on reasoning undertaken by other scholars. Reference your work consistently in line with an accepted referencing format – Use Vancouver.
Some papers to take ideas from:
1. Kacetl J, Marešová P, Maskuriy R, Selamat A. Ethical Questions Linked to Rare Diseases and Orphan Drugs–A Systematic Review. Risk management and healthcare policy. 2020 Oct 13:2125-48. https://doi.org/10.2147/RMHP.S260641
2. Gericke CA, Riesberg A, Busse R. Ethical issues in funding orphan drug research and development. Journal of Medical Ethics. 2005 Mar 1;31(3):164-8. https://doi.org/10.1136/jme.2003.007138
3. Taylor C, Jan S, Thompson K. Funding therapies for rare diseases: an ethical dilemma with a potential solution. Australian Health Review. 2017 Feb 16;42(1):117-9 https://doi.org/10.1071/AH16194
4. McCabe C, Claxton K, Tsuchiya A. Orphan drugs and the NHS: should we value rarity?. Bmj. 2005 Oct 27;331(7523):1016-9. https://doi.org/10.1136/bmj.331.7523.1016
5. Boy R, Schwartz IV, Krug BC, Santana-da-Silva LC, Steiner CE, Acosta AX, Ribeiro EM, Galera MF, Leivas PG, Braz M. Ethical issues related to the access to orphan drugs in Brazil: the case of mucopolysaccharidosis type I. Journal of medical ethics. 2011 Apr 1;37(4):233-9. https://doi.org/10.1136/jme.2010.037150
6. Kinney J. Health disparities: exploring the ethics of orphan drugs. American Journal of Health-System Pharmacy. 2014 May 1;71(9):692-3. https://doi.org/10.2146/ajhp130348
7. Encina G, Castillo-Laborde C, Lecaros JA, Dubois-Camacho K, Calderón JF, Aguilera X, Klein AD, Repetto GM. Rare diseases in Chile: challenges and recommendations in universal health coverage context. Orphanet Journal of Rare Diseases. 2019 Dec;14:1-8. https://doi.org/10.1186/s13023-019-1261-8
8. Drummond MF, Wilson DA, Kanavos P, Ubel P, Rovira J. Assessing the economic challenges posed by orphan drugs. International journal of technology assessment in health care. 2007 Jan;23(1):36-42. https://10.1017/S0266462307051550
9. ODs AT. Assessing the economic challenges posed by orphan drugs: A comment on Drummond et al. International journal of technology assessment in health care. 2007;23(3):397-404. https://doi.org/10.1017/S0266462307071012
10. Drummond MF, Wilson DA, Kanavos P, Ubel PA, Rovira J. Assessing the economic challenges posed by orphan drugs: a response to McCabe et al. International Journal of Technology Assessment in Health Care. 2007;23(3):401-4. https://doi.org/10.1017/S0266462307071024
11. Hughes DA, Tunnage B, Yeo ST. Drugs for exceptionally rare diseases: do they deserve special status for funding?. Qjm. 2005 Nov 1;98(11):829-36. https://doi.org/10.1093/qjmed/hci128
12. Picavet E, Dooms M, Cassiman D, Simoens S. Orphan drugs for rare diseases: grounds for special status. Drug Development Research. 2012 May;73(3):115-9. https://doi.org/10.1002/ddr.21005
13. Wang T, Scuffham P, Byrnes J, Downes M. Cost-effectiveness analysis of gene- based therapies for patients with spinal muscular atrophy type I in Australia. Journal of Neurology. 2022 Dec;269(12):6544-54. https://doi.org/10.1007/s00415-022-11319- 0
WHO
Parliament of Australia – Rare diseases
https://www.aph.gov.au/Parliamentary_Business/Committees/House/Health_Aged_Care_and_Sport/N ewdrugs/Report/section?id=committees%2Freportrep%2F024755%2F77601

Watch Video #9 in Course Content and please post your answer to the following in this Discussion:
Understanding that ethical issues are complex, please determine whether the decision made in the video considered (1) the relevant facts, (2) practical wisdom, (3) sound moral reasoning, and (4) answer the question: Did Mr. West kill Dr. Gruber OR did he give him life?