Student Perspectives on Critical Issues
The Center for Human Dignity in Bioethics, Health, and the Holocaust offers internships in which students can explore some of the issues pertaining to human dignity in health care in more detail and share their views with the Misericordia University community.
Social Justice
The bioethical conception of justice is concerned with managing the distribution of medical and health resources in a fair and equitable manner. Perhaps the main issue in this category is access to health care. Access issues can be varied across gender, ethnic, and socioeconomic backgrounds. Occupation has an effect on health care access because higher paying jobs often offer better insurance plans with more coverage. Gender is also a factor as women are less likely to be insured under their work and more likely to become dependents on their spouse's policy (kff.org).
Those who are uninsured or underinsured are subject to bias and discrimination by hospitals, clinics, and private practices. American health coverage is not in the hands of medical professionals, but in the grip of lawmakers and insurance companies. People with insufficient health insurance often face obstacles when trying to receive necessary medical care and are often forced to pay large sums out of pocket or be turned away from medical centers altogether.
The United States health insurance system is in chaos and, quite frankly, has been for some time. When compared to countries with comparable health care systems, America is first in spending. In 2016, the National Health Expenditure averaged $10,348 per person, making up 17.9% of the country's total spending (cms.gov). Despite the enormous amounts of money spent in this sector, America has very poor statistics on infant mortality, life expectancy, and preventable deaths when compared to nations with similar health care systems. This leads to an estimated 18,000 unnecessary deaths in the US every year (Degrazia). The system is in dire need of reform.
Resources for further information:
Rhodes, Rosamond, and Anita Silvers. “Medicine and Social Justice: Essays on the Distribution of Healthcare, 2nd Ed.”
Almgreen, Gunnar. “Health Care Politics, Policy, and Services: A Social Justice Analysis, 2nd Ed.”
Buchbinder, Mara. “Understanding Health Inequalities and Justice: New Conversations Across the Disciplines”
Monagle, John F. “Health Care Ethics: Critical Issues for the 21st Century”
Written by Laura Baut '18, Intern for the Center for Human Dignity in Bioethics, Health, and the Holocaust
Patient/Personal Autonomy
Autonomy is defined as "self-governance." When the concept of autonomy is applied to medicine in a clinical setting, the main ethical concern is making sure that the patient personhood is being respected, and that the patient is making a decision based on his/her values. Not all persons are considered autonomous. Semi-autonomous people include children, individuals who have a mental illness or handicap, and people diagnosed as senile. People lacking all autonomy include infants and comatose people. Autonomy and judgment may be affected by illness, fear, and psychological status among other factors.
In 1980, the American Medical Association (AMA) outlined a list of patient's rights concerning autonomy and the responsibility of physicians to uphold patient's rights and respect their decisions. Some of the main guidelines include the doctor's duty to present the patient with all the information regarding the current state of his/her health, the patient's right to refuse treatment, the patient's right to privacy and dignity (except in rare cases in which the doctor may provide discreet disclosure to a third party due to legal necessity), and the duty of the doctor to practice noninterference - giving information without overtly influencing the decision of the patient. It is obvious that in clinical settings the patient's values and the physician's values may differ as they are coming from different backgrounds. Nevertheless, the patient's rights and values must be respected.
Resources for further information:
Veatch, Robert M. “Case Studies in Biomedical Ethics, 2nd Ed.”
Beauchamp, Tom L. and Joseph Childress. “Principles of Biomedical Ethics, 5th Ed.”
Spriggs, Merle. “Autonomy and Patients’ Decisions”
Written by Laura Baut '18, Intern for the Center for Human Dignity in Bioethics, Health, and the Holocaust
Medical Research and Experimentation
Medical experimentation is one of the topics that is most relevant to modern medicine. Almost every medication, vaccine, and chemical therapy for a given ailment has been run through a rigorous set of clinical trials. These trials often require the use of human subjects so that the bodily effects of each treatment can be accurately recorded. However, before the clinical trial can begin there are ethical codes and standards to be cleared so that the experimental environment can be safe for subjects and researchers alike.
It is impossible to discuss the importance of ethical practice in medical experimentation without reflecting on the medical experiments conducted in concentration camps during the Holocaust. These experiments caused immeasurable suffering to victims and survivors. Autonomy was completely disregarded. Some modern medical researchers are seeking the rights to access the scientific data from these experiments, claiming that the information in these files has the potential to save lives in the future. These requests are unsettling to many scholars in the field and the remaining survivors of the Holocaust. The ethical dilemma lies not with the data provided in the documents, but with the way in which it was obtained and the way in which it may be used. Modern researchers will look to justify the usage of this data by separating the medical data from the context in which the data was obtained. Herein lies the issue. To remove the Nazi stigma from the data may lead to the researchers unintentionally "justifying the Nazi experiments and desecrating the memory of the Holocaust victims" (Greene, 156). The quest for knowledge of the body's inner workings is nothing new. Physicians have been trying to answer these questions for centuries, but many feel that using the data from the Nazi experiments is not the answer to this dilemma. The horrible reality of these events changed the field of medical experimentation forever.
The standard ethical guidelines used in medical research today were formed less than a century ago at Nuremberg, when Nazi physicians were put on trial for their criminal treatment of their subjects/prisoners. Evidence from the experiments within the camps demonstrated the devastating effects that come with unregulated medical research standards. The Nuremberg Code that was developed in response to the trials states that, first and foremost, the free and voluntary consent of the individual research participant must be obtained. Other points within the code address the requirement that participants should not be subjected to any treatment that will knowingly cause harm, and that all experiments should be done for the good of society only if there is no alternative method for testing the data. In this way, the Nuremberg Code aims to prevent the ethical atrocities committed by physicians "in the name of science" from every happening again.
Resources for further information:
Caplan, Arthur. “When Medicine Went Mad”
Annas, George J. “The Nazi Doctors and the Nuremburg Code”
Lifton, Robert Jay. “The Nazi Doctors: Medical Killing and the Science of Genocide”
LaFluer, William R. “Dark Medicine: Rationalizing Unethical Medical Research”
Written by Laura Baut '18, Intern for the Center for Human Dignity in Bioethics, Health, and the Holocaust
Death and Dying
End of life care is an increasingly important bioethical issue to address. The difficulties associated with death and the process of dying include setting forth a concrete definition of death itself; medical professionals agree that death occurs when the heart and respiratory system stop functioning, but there is wide debate within the medical community over whether brain death should also be considered part of the definition. Other ethical concerns include the use of Do Not Resuscitate (DNR) orders, views on life-sustaining measures, and the debate over issues such as physician-assisted suicide and euthanasia.
Decisions regarding life-sustaining treatment and cardiopulmonary resuscitation (CPR) in the case of an unforeseen illness or accident that threatens one's life should be a decision made by an individual patient or a surrogate he or she has appointed to be the decision-maker if the patient is found to be lacking autonomy on valid grounds. Medical professionals should be respectful of the patient or the surrogate's wishes and should not proceed in a way that benefits the doctor or the health care system or disregards the rights or the dignity of the patient.
When diagnosed with a terminal illness, there is a strong likelihood that the patient will endure some level of suffering as the disease progresses. In instances like these, depending on location, there may be certain options offered to patients if the suffering becomes too great to bear and all other alternatives for care have been explored. These options are controversial in nature and are limited to small geographic regions within the United States. Physician-assisted suicide (PAS) has made headlines in recent years as states within the country have passed laws legalizing the practice. Each of these states has strict guidelines for determining whether or not a patient qualifies for this procedure. PAS is a controversial topic because it deals with intentionally ending one's life. Opponents of PAS are concerned about the risk for abuse that include doctor fallibility, socially-induced biases towards individuals and groups, medical coverage and accessibility, and ineffective monitoring of the PAS system (Degrazia 435).
Resources for further information:
Degrazia, David. “Biomedical Ethics, 7th Edition”
Veatch, Robert and Tom L. Beauchamp. “Ethical Issues in Death and Dying”
Younger, Stuart J. “The Oxford Handbook of Ethics at the End of Life”
Written by Laura Baut '18, Intern for the Center for Human Dignity in Bioethics, Health, and the Holocaust