Religious Values and Refusal of Highly Effective Life Saving Treatment by Minors

By Michael DiStefano

Caring for children with life-threatening illnesses is very difficult for both parents and health care providers. The experience can be even more painful when the child refuses highly effective life saving treatment (HELST). Most states have “mature minor” statutes or case law that recognize the rights of children with demonstrated decision-making capacity (and who are usually older than 14 years) to make decisions about their health care as a legal adult, regardless of the wishes of their parents or providers. Two notable examples are Dennis Lindberg, a 14-year-old Jehovah’s Witness who died from leukemia after refusing a blood transfusion, and Benny Agrelo, a 15-year-old who died after refusing to continue taking immunosuppressants following two liver transplants. In each case a judge declared the boy a mature minor whose medical decisions must be respected.

However, the standard criteria for determining whether a minor has capacity are only likely to be adequate in the case of minors who invoke non-religious values to refuse HELST. I will argue that, though controversial, heightened scrutiny ought to be applied when minors justify their refusal with religious values. It therefore may have been wrong to treat Dennis Lindberg and others like him as mature minors.

In general, decision-making capacity rests on four conditions: (1) the ability to communicate a choice, (2) an understanding of the facts and information related to the choice, (3) an appreciation of the situation and its consequences, and (4) the ability to rationally manipulate the relevant information and to reason about treatment options.[i] These criteria ensure that a minor’s decision is valid in the logical sense. They require the minor to clearly state premises (i.e., subjective value statements and objective medical facts) that logically entail the truth of a clearly stated conclusion (i.e., whether to accept or refuse some treatment). Crucially, none of the criteria requires that the conclusion be philosophically sound. If so, we would need to be able to objectively determine whether all of an individual’s premises are true, in addition to the objective medical facts. However, because value statements are subjective, capacity determinations cannot require that minors’ decisions be sound if they are motivated by a desire to respect patient autonomy.

Still, merely valid decisions lack a critical component, namely, whether minors themselves genuinely believe their stated value premises. Some will object by noting that people generally do not state things they do not believe, especially when making high stakes decisions like whether to refuse HELST. However, this additional consideration is intended precisely for the admittedly rare circumstances in which minors express value premises with which they do not genuinely agree—knowingly or not—as a result of coercion or social pressures. These circumstances are worrisome because attempts to respect minors’ autonomy by granting mature minor status should not instead enable circumstances that have already compromised autonomy.

Patients who invoke religious values to refuse HELST are more likely to have experienced coercion or social pressures than those whose refusals rest on non-religious values. First, the stakes associated with religious values are more coercive than those associated with non-religious values because there is more to be lost by failing to uphold religious values. Religious values are often linked to absolute gains or losses. Eternal salvation often depends on whether one has lived according to the dictates of one’s faith. Non-religious values lack similar stakes. Of course, the repercussions for failing to honor non-religious values (e.g., moral distress, disappointment of loved ones, ostracization) are significant, but cannot compare to the gain or loss of something with infinite value like eternal life-after-death.

Second, religious values are frequently cultivated within tightly knit communities of like-minded individuals. The disappointment of loved ones and ostracization felt by those who fail to honor religious values are likely to be more acute than that felt by those who flout non-religious values. Of course, non-religious values are also inculcated within communities, but modern communities, especially those in Western liberal democracies, are pluralist in nature. Diverse communities are likely to tolerate a greater degree of divergence from value-based behavioral norms than homogenous religious communities that are typically the result of self-selection.

Third, young people are more easily influenced by their peers and other external pressures.[ii] Therefore, the religious values of minors active in religious communities are more likely to result from either a fear of absolute gains or losses or a desire to act in accordance with the expectations of those around them. Their religious values are less likely to be the result of their own considered and reflective deliberation.

Finally, education within religious communities is sometimes regulated (e.g., through home schooling or programs to complement public curricula) to limit access to competing views that may impact the values its adherents develop. Insofar as minors receive this regulated education, their religious values may be more a product of the views of their parents or community leaders than their own deliberation.

Returning to the cases introduced above, Dennis Lindberg, a Jehovah’s Witness, justified his refusal of HELST with the religious value that blood transfusions are contrary to the tenets of his faith. Per the traditional standards for demonstrating capacity, Dennis clearly articulated this value and logically demonstrated its relation to his refusal. However, the four reasons just discussed combined with the fact that his aunt—also a devoted Jehovah’s Witness—was raising him call into question how genuinely he believed the value. Benny Agrelo was not similarly influenced by religion.[iii] His refusal of HELST was based on the value that a shorter, but higher quality life is preferable to a more prolonged, but painful existence. He felt too sick while taking immunosuppressants to enjoy life. Benny’s parents initially held the opposite opinion,[iv] thus supporting the claim that non-religious values are less likely to be the result of social pressures.

When minors refuse HELST, providers should be especially mindful of the social forces that influence religious values. It is not enough to rely on the traditional criteria for determining decision-making capacity in these circumstances. Providers should engage more closely with these young patients, perhaps by adopting the deliberative model of the physician-patient relationship,[v] and do their best to ascertain how free they are from coercion or social pressures and how genuinely they believe their professed religious values. Similarly, the law should be revised with this heightened scrutiny in mind.

Michael is currently a Teaching and Research Assistant at the University of Pennsylvania where he recently completed a Master's degree in Bioethics. He graduated from Princeton University in 2011 with a degree in Religion and Philosophy. His research interests include religion and clinical ethics, the ethics of mobile health technologies and health incentives, and reproductive ethics. This post was chosen as a finalist for the 2014-2015 Daniel Callahan Young Writer's Prize. 

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[i] Paul S. Appelbaum, “Assessment of Patients’ Competence to Consent to Treatment,” The New England Journal of Medicine 357 (2007): 1834-40; Douglas S. Diekema, “Adolescent Refusal of Lifesaving Treatment,” Adolescent Medicine: State of the Art Reviews 22, no. 2 (2011): 213-28.

[ii] Diekema, “Adolescent Refusal of Lifesaving Treatment.”

[iii] Jonathan F. Will, “My God My Choice: The Mature Minor Doctrine and Adolescent Refusal of Life-Saving or Sustaining Medical Treatment Based Upon Religious Beliefs,” The Journal of Contemporary Health Law and Policy 22, no. 2 (2006): 233-300.

[iv] Ibid.

[v] Ezekiel J. Emanuel and Linda L. Emanuel, “Four Models of the Physician-Patient Relationship,” Journal of the American Medical Association 267, no. 16 (1992): 2221-6.

DNR Ebola: Is there a professional obligation to provide treatment?

By Avigile Baehr

Overhead pages are a staple of a busy ER. They give doctors and nurses a couple extra minutes to prepare for the quick action needed to save patients’ lives after strokes, heart attacks, or trauma. Now, imagine a case today:

Attention, ER staff. A 32 year old female at high risk for Ebola is coming in via ambulance with fever, vomiting, and unstable vital signs. If you are willing to accept the personal risk inherent in providing medical care to this patient, please report to room 3. Otherwise, please disregard this announcement.

A conditional appeal, not an imperative. A qualification that seems to run counter to the oaths that medical professionals take. And yet, a stipulation that hospitals and healthcare providers have considered as they decide how and whether to engage with this deadly infection. Ebola poses a very real threat to providers: two nurses contracted the virus while caring for a patient in Dallas, and California nurses have gone on strike in response to lack of preparedness for safely dealing with the infection. Given the disease’s documented transmission to healthcare providers, its high fatality rate, and the lack of an FDA-approved treatment or vaccine, what are our professional obligations in caring for these patients?

The classic principles of medical ethics are autonomy, beneficence, justice, and nonmaleficence. For the purposes of the ‘obligation to treat’ dilemma, I will assume that Ebola patients want to receive treatment, and I will not consider the ethics of experimental treatments as they might relate to the ‘do no harm’ principle. The principles of beneficence and justice, however, are particularly salient to this question. Healthcare providers are not merely obligated to do no harm, but we must also do good by our patients. Despite the uncertainty regarding some experimental treatments for Ebola, timely supportive care is unquestionably beneficial for these patients. Intravenous fluids help prevent shock and organ failure. Breathing tubes can keep patients alive until the virus runs its course. In certain cases, CPR can restart a heart and give someone a chance to survive. Fair and equitable treatment of Ebola patients requires that they be treated by the same clinical standards that apply to any other critically ill patient. By these core principles, the ethical imperative to provide medical treatment to Ebola patients is clear.

What argument can be made, then, for refusing to provide comprehensive medical treatment to a patient with Ebola?

Perhaps providers are only obligated by these principles once they accept someone as a patient. Can a doctor or nurse then ethically refuse to engage in a provider-patient relationship with someone suffering from Ebola, thus freeing him or her of any obligation to treat?

In routine medical care, maybe or maybe not. Most states have specific clauses that allow providers to refuse to provide certain treatment, such as abortion care, on the basis of moral objections. But, both the law and medical professional societies uniquely distinguish emergency situations as obligating medical treatment without qualification. The Emergency Medical Treatment and Active Labor Act requires that all hospitals who offer emergency care services and who receive any Medicare funding (read: the vast majority of US hospitals) evaluate and stabilize any patient who seeks medical care. This law was designed to prevent hospitals from refusing to treat uninsured or underinsured patients, but it also serves to promote fairness and ameliorate other treatment disparities. Similarly, the American Medical Association Principles of Medical Ethics dictates that physicians should be free to choose the terms in which they agree to provide medical care, except in emergencies. By virtue of their agreement to serve as medical professionals, providers implicitly engage in a patient-provider relationship with anyone who seeks urgent care at their facility.

But, perhaps there should be an exception for personal risk. A similar dilemma with concern for provider safety arose in the early days of the HIV/AIDS epidemic, but both the American Medical Association and the American Dental Association explicitly reaffirmed the duty to treat. Both professional societies appealed to fairness, stating that a patient should not be subjected to discrimination based on any characteristic, including disease status. There is a utilitarian argument to be made in support of this personal risk exception: if a provider treats and subsequently contracts Ebola from one patient, then that provider’s other patients might suffer. However, in the United States, healthcare associated transmission of Ebola remains an incredibly rare event, and a utilitarian analysis does not fall in favor of refusing to treat Ebola patients. Two of the 170+ people who had direct or possible contact with the three Ebola patients from Dallas contracted the virus, and no healthcare provider has died from Ebola transmission in the United States. To put this number in context, an estimated one in ten healthcare workers experiences a needle stick each year, placing them at risk for blood borne pathogens such as HIV and Hepatitis C. Providing care for sick patients inherently carries a certain degree of risk, but so long as providers are able to mitigate that risk through personal protective equipment and standard precautions, this does not excuse them from their professional responsibilities.

In conclusion, the basic principles of medical ethics unequivocally support treatment of Ebola patients. Ebola patients can present in critical condition and require timely medical care, thus placing them in the category of a medical emergency and further obligating providers and hospitals to accept these patients for treatment. Personal risk might be an important consideration, but the risk of transmission can be appropriately mitigated through proper protective equipment in the United States. Ebola patient in room 3? That announcement will never sound routine, but we must treat even these patients fairly and by the highest standards of medical care. 

Avi is currently an MD/MBE candidate at the University of Pennsylvania. She graduated from Vanderbuilt University in 2011 with a degree in biology and philosophy. This post was chosen as a finalist for the 2014-2015 Daniel Callahan Young Writer’s Prize. 

Congratulations Finalists

Thank you to every person who submitted to the Daniel Callahan Young Writers Prize! There were nearly thirty excellent submissions and the five finalists have been chosen. 

Their essays will be read by the following panel of judges:

Daniel Callahan, PhD-- As President Emeritus and co-founder of The Hastings Center, Callahan helped shape the bioethics field. He has written over 47 books and has had hundreds of peer-reviewed publications and op-eds. 

Michael K. Gusmano, PhD-- Gusmano is a a political scientist who holds adjunct appointments at Columbia University and Yale University and is a Research Scholar at The Hastings Center. He has published widely in the areas of health policy, aging, and comparative welfare state analysis.

Laura Haupt, M.A.-- Haupt is the Managing Editor for two peer-reviewed bioethics journals, the Hastings Center Report and IRB: Ethics and Human Research. Her background is in English literature and she has helped edit a number of special reports for the Hastings Center Report, including LGBT Bioethic: Visibility, Disparities, and Dialogue. 

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Daniel Callahan Young Writer's Prize Finalists

Avigile Baehr, MD/MBE Candidate, University of Pennsylvania

"DNR Ebola: Is There a Professional Obligation to Provide Treatment?"

Michelle Bayefsky, Pre-Doctoral Fellow, NIH Department of Bioethics

"Uterine Transplant: Where, If Anywhere, Should We Draw the Line?"

Rachel Conrad, MD Candidate, Baylor College of Medicine

"The Ethical Crisis in Medical Training"

Michael DiStefano, Research Assistant, University of Pennsylvania

"Religious Values and Refusal of Highly Effective Life-Saving Treatment by Minors"

Tim Rubbelke, PhD Candidate, St. Louis University Center for Healthcare Ethics

"The Paradox of Government Vaccine Mandates" 

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We anticipate an announcement of the winner in mid-January. Thank you again to all the participants, we look forward to posting some of the other compelling submissions to this blog in the coming months. There were far more fantastic entries than could be chosen. 

Deadline Approaching

The deadline to submit for the Daniel Callahan Young Writer's Prize is this Saturday, November 15th. Below is a summary of the contest and the guidelines for submission. Don't forget to submit!

Prize Summary 
This post is pleased to announce a new award, The Daniel Callahan Young Writer's Prize, sponsored by Daniel Callahan. Submissions will take the form of essays on a bioethics topic that are written as blog posts, designed for this blog, Bioethx Under 25. From all submissions, a group of finalists will be chosen and then an expert panel of bioethicists, including Daniel Callahan, will read the finalists' essays and award one prize amounting to $500. 

All submissions will be considered for publication on the blog and eligibility to be a finalist or receive the prize is dependent on willingness to edit and revise the essay for publication. Submissions will be judged anonymously. Please see guidelines below for further information. 

Prize Submission Guidelines

- Essays must be 500-1000 words and original submissions to Bioethx Under 25 i.e. never posted before on the blog. 

- Essays must conform to all other submission guidelines for the Bioethx Under 25 blog and thus, be clearly related to bioethics and be written in an accessible manner. Please refer to the blog's About Page for more information. 

- Essays will be accepted from September 10th, 2014 to November 15th, 2014. 

- Any writer who is also a student in high school, college, or a graduate program is eligible to submit. Any writer who is not a student is eligible so long as he/she has not completed a PhD and/or worked more than 5 years in the bioethics field with a terminal degree (e.g. JD or MD). So long as the other guidelines have been met there is no age limitation or requirement for submission. 

- Writers are not eligible if they currently or have previously worked full time for The Hastings Center or Daniel Callahan. Anyone affiliated with Bioethx Under 25 in an editing capacity is also ineligible. 

- To submit, please email bioethicsunder25@gmail.com with your essay attached in word format. In the body of the email please indicate that you are submitting for The Daniel Callahan Young Writers Prize and include your name, phone number, email address, current occupation and place of occupation (if a student, then your school, potential degree, and expected graduation year), and your highest degree attained with the school and year. 

- For any questions please email bioethicsunder25@gmail.com or comment below. 

Paws and Talk About Cost

By Chelsea A. Jack

“The capacity for suffering and enjoying things is a prerequisite for having interests at all, a condition that must be satisfied before we can speak of interests in any meaningful way,” –Peter Singer

Singer has argued for the equitable and fair treatment of animals based on their ability to suffer in ways similar to humans. I wonder if, in some circumstances, ill pets are treated more humanely in times of crisis than their human counterparts.

Daniel Callahan, co-founder of The Hastings Center, has thoughtfully written on how Americans view cost as a morally acceptable factor in decision-making when it comes to the death of a pet, but not always the death of a human loved one.  Veterinary doctors are not only willing to explain a patient’s prognosis, but also the financial costs for a family choosing among various treatment options for their pet. The reason for this seems to be that conversations about end-of-life decision-making come more easily in the context of veterinary care than when the patient in question is a human loved one. Because medical doctors are often reluctant to talk about end-of-life care with their patients, conversations about the financial costs of such care do not occur either. This is not necessarily the case with veterinary care, where, if anything, vets go out of the way to prepare families for the likelihood of death – and its costs. With both human and non-human patients facing illness, the financial costs of care can be startling and deeply upsetting. Callahan has asked how medical doctors might deliver care options to patients in the way his family’s vet did: “beautifully integrat[ing] money, medical candor, and compassion.”

I found myself considering Callahan’s reflection on the death of his own Cavalier King Charles as I sat in the waiting room of the VCA Animal Specialty & Emergency Center in Wappingers Falls, New York a few weeks ago. In no more than three minutes, my beloved 8-month-old Boxer-Pit mix named Trapper – after MASH 4077’s Trapper John, MD – ventured away from me with another canine companion during a cookout with my neighbors. He played leap frog in-between cars speeding down a nearby highway. When I realized he was gone, I ran down to the road with an ominous feeling in my gut. After calling his name for a minute, an adrenaline-charged Trapper came bolting up from the highway and collapsed at my feet completely out of breath. He had deep abrasions along his front-left paw, which was visibly knotted, and, as the adrenaline wore off, he could barely stand, even though he remained stoically silent with his ears back and eyes locked to my face.

I broke every speed limit on the way to the emergency care center where Trapper went into shock and began convulsing. Exchanging worried glances, the nurses quickly carried him away from me into another room where they attempted to stabilize him.

Immediately, but kindly, a nurse presented me with a series of consent forms and unsettling numbers: Was I okay with paying $400-600 to stabilize Trapper? Did I want them to try and resuscitate Trapper if his heart stopped, even if it meant spending $500 on a procedure with a success rate around 17 percent? Did I consent to the three recommended x-rays of his front-left leg, chest, and hips, which would approach $400 – without factoring in the possibility of further x-rays later over the next 24 hours? There was a possibility that Trapper would pass away due to contusions in his lungs – did I want to keep him overnight for monitoring even if that was another $200? Did I want to see the credit plan offered for 12 months without interest for patients who cannot afford expensive high-quality care?

Throughout the whole nightmare, the doctors and nurses presented each decision-making scenario with at least two options: cost projections for the “ideal” treatment plan versus the “less-ideal” treatment plan. As I weighed these projections, I thought how the word “ideal” places a nontrivial degree of guilt onto the decision-maker who opts for the less-ideal options. It problematically values the more costly decision as morally preferable, even when this might not accurately reflect the moral landscape – marked by competing financial obligations – in which real-time decisions are made.

Individuals and families (more often than not) cannot isolate an immediate, short-term moral decision from the other long-term ones lingering in the background. For example, as I weighed the two treatment plans presented to me, I thought, “I have signed a lease committing me to pay $X/month. I love my apartment and cannot legally break this lease agreement, and I cannot emotionally or financially afford to forfeit my living situation even if it means that Trapper has to receive the 'less-ideal' treatment plan". As a recent post-grad, I weighed the costs of fulfilling one long-term goal (i.e. living happily in my new home) against the costs of fulfilling my obligations to care for Trapper as my pet who was facing a health crisis. Committed and interdependent moral agents are forced to make these kinds of decisions every day. In my case, it was productive to not only have Trapper’s physician initiate a conversation about our end-of-life preferences, but also address possible treatment options and possible costs. 

Miraculously, Trapper is expected to make a full recovery and came  home from the emergency care center after 24 hours of observation. I’ll borrow Callahan’s language to describe my own personal take-away from this ordeal: Trapper’s care team embodied those qualities that “we might hope for from a doctor for our care, but by no means yet reliably available” in the human medical context.

Chelsea is a Research Assistant at The Hastings Center. She graduated with highest distinction from the University of Virginia, where she received a B.A. in political and social thought and anthropology with a minor in bioethics. Her research interests include medical and legal anthropology, political and social theory, bioethics, and contemporary feminist thought. 

The Daniel Callahan Young Writer's Prize

Prize Summary 
This post is pleased to announce a new award, The Daniel Callahan Young Writer's Prize, sponsored by Daniel Callahan. Submissions will take the form of essays on a bioethics topic that are written as blog posts, designed for this blog, Bioethx Under 25. From all submissions, a group of finalists will be chosen and then an expert panel of bioethicists, including Daniel Callahan, will read the finalists' essays and award one prize amounting to $500. 

All submissions will be considered for publication on the blog and eligibility to be a finalist or receive the prize is dependent on willingness to edit and revise the essay for publication. Submissions will be judged anonymously. Please see guidelines below for further information. 

Prize Submission Guidelines

- Essays must be 500-1000 words and original submissions to Bioethx Under 25 i.e. never posted before on the blog. 

- Essays must conform to all other submission guidelines for the Bioethx Under 25 blog and thus, be clearly related to bioethics and be written in an accessible manner. Please refer to the blog's About Page for more information. 

- Essays will be accepted from September 10th, 2014 to November 15th, 2014. 

- Any writer who is also a student in high school, college, or a graduate program is eligible to submit. Any writer who is not a student is eligible so long as he/she has not completed a PhD and/or worked more than 5 years in the bioethics field with a terminal degree (e.g. JD or MD). So long as the other guidelines have been met there is no age limitation or requirement for submission. 

- Writers are not eligible if they currently or have previously worked full time for The Hastings Center or Daniel Callahan. Anyone affiliated with Bioethx Under 25 in an editing capacity is also ineligible. 

- To submit, please email bioethicsunder25@gmail.com with your essay attached in word format. In the body of the email please indicate that you are submitting for The Daniel Callahan Young Writers Prize and include your name, phone number, email address, current occupation and place of occupation (if a student, then your school, potential degree, and expected graduation year), and your highest degree attained with the school and year. 

- For any questions please email bioethicsunder25@gmail.com or comment below. 

About Daniel Callahan

Daniel Callahan is Senior Research Scholar and President Emeritus of The Hastings Center. He was its cofounder in 1969 and served as Director and President between 1969 and 1996.  Over the years his research and writing have covered a wide range of issues, from the beginning until the end of life. In recent years, he has focused his attention on ethics and health policy.

He has served as a Senior Lecturer at the Harvard Medical School and is now a Senior Scholar at Yale. He received his B.A. from Yale and a PhD in philosophy from Harvard. He has honorary degrees from the Charles University, Prague, the Czech Republic, the University of Colorado, Williams College, Oregon State University, the State University of New York and the University of Medicine and Dentistry of New Jersey.

Callahan is an elected member of the Institute of Medicine, National Academy of Sciences; a former member of the Director’s Advisory Committee, the Center for Disease Control and Prevention, and of the Advisory Council, Office of Scientific Responsibility, Department of Health and Human Services. He won the 1996 Freedom and Scientific Responsibility Award of the American Association for the Advancement of Science. He is the editor or author of 47 books. 

Inflicting Harm to Prevent Harm: Creating Policy for Vulnerable Populations Seeking Asylum in Australia

By Amy Louise Constable 

Australian asylum seeker policy is currently riddled with a series of ethical conundrums. Being party to the 1951 United Nations Convention and Protocol Relating to the Status of Refugees, Australia is obligated to accept those claiming asylum from persecution, violence or fear either who enter into Australian territory and respect the principle of non-refoulment and not send refugees to an environment from which they are fleeing. Detention of asylum seekers has been a bipartisan policy in Australia since 1992 when Australian Prime Minister Paul Keating introduced off-shore detention, with bipartisan support. The zealous implementation of increasingly cruel offshore detention policies has been described as a ‘race to the bottom’.

The 2013 Australian federal government was characterized by the promise of increasingly ‘tough’ and cruel policies seeking to deter asylum seekers entering Australia by boat and protect Australian sovereignty by both major parties. The conservative Government initiated Operation Sovereign Borders, an extension of existing asylum seeker policy. Operation Sovereign Borders is an extension of pre-existing off-shore processing policy which instructs that all asylum seekers arriving by boat, ‘illegal maritime arrivals’, are to be processed off-shore at Manus Island, a northern territory of Papua New Guinea (PNG), and at Nauru with “no chance of being settled in Australia as refugees”. This policy has been justified by both major Australia political parties as preventing further deaths at sea. Between 2008-2013 approximately 1200 people died at sea trying to come to Australia by boat. This begs the question, what is the ethically acceptable cost of preventing death at sea?

The ‘tough’ new stance on asylum seekers has recently inflamed debate surrounding exactly what the ethical, medical and legal responsibility of the Australian Government to the asylum seekers on Australian territory and on international territory in Australian Government funded detention centers is. The logic for this policy is justified by the Department of Immigration and Border Protection as stopping deaths at sea and protecting national security. Consequently, this policy sees the compulsory detention of thousands of adults, minors and children, of whom 91% are declared to be refugees, with higher protection visa rates for specific ethnic groups (i.e., the Afghani’s receiving a protection visa being approximately 99.7%)

Operation Sovereign Borders dictates that all asylum seekers be transferred from Australian sovereign territory within 48 hours, as instructed by Minister for Immigration and Border Protection, Scott Morrison. This rapid process involves all medicines, prostheses, and medical equipment being confiscated, and often not returned, and does not provide sufficient time for a comprehensive diagnosis of potential diseases. Consequently the process has seen several healthcare horrors:

--Potential exposure of asylum seekers to tuberculosis following a non-diagnosis while being processed on Christmas Island (remote north-western Australian territory).

--A 23 year old Iranian-Kurdish man dragged from a computer room and beaten to death by a G4S security employee.

--Detainees attacked with machetes and throats slashed during attacks by locally-hired security guards.

--A Rohingyan asylum seeker who was identified as having a ‘very high risk’ pregnancy was transferred to Nauru for the purpose of ‘setting an example’.

--a woman being told she should not ‘expect a lot’ of healthcare after miscarrying.

--An Iranian man lapsing into severe epilepsy following a refusal of access to confiscated epilepsy medication.

A 92 page letter from fifteen doctors working at the Christmas Island and Manus Island detention center has highlighted the inadequate resourcing of centers and the degradation of those seeking treatment. They have stated that they are being paid to compromise medical ethics and have explicitly stated that doctors are expected to participate in ‘unethical conduct and in gross departures from clinical standards’.

Issues of reciprocity have further confounded exactly what Australia’s obligations are to people fleeing their home countries. A particularly stark example of this is the employment of Afghan Hazāra, a persecuted ethnic minority in Afghanistan, as interpreters by the Australian Defense Forces during the NATO led military invasion in Afghanistan, many of whom have applied for asylum in Australia. Reports have surfaced that Afghani-Hazāra interpreters who have had their asylum application rejected have been killed by the Pashtun led Taliban due to their ethnic and religious difference to the Taliban and their assistance to the allied NATO forces. While this itself is an issue largely outside the scope of this short essay (what responsibility do we have to those who have offered us assistance?), it highlights the incredible complexity of ethical, moral and legal issues associated with formulating policy that may harm incredibly vulnerable or precarious populations.

These few specific issues among a sea of thousands of complaints and detailed reports by security contractors Serco of self-harm, sexual assault, hunger strikes and the transferal of unaccompanied minors to detention centers for indefinite prolonged periods. Transferal of minors into detention has been criticized for exposing children to distressing situations, children referring to themselves by their client number as opposed to their name (see 46.18-59.12 of attached video) report, confronting developmental delays due to lack of access to education and exposure to environments riddled with self-harm, sexual and physical assault. The ‘tough stance’ taken by the Government highlights the ethical fallacy of invoking a policy causing medical and psychological harm in the name of trying to deter people from taking a dangerous journey.

The ethical mess of Australian detention center medical administration is highlighted by a co-author of the 92 page letter to the Guardian and Minister Morrison says; “there will one day be a royal commission [the highest level of government-sanctioned inquiry in Australia] into what is taking place on Christmas Island. He suggested we document well.” Creation of policy for vulnerable populations is fraught with ethical difficulty and complexity, and is further confounded when the democratic processes, such as the 2013 Australian federal elections, indicate a seeming majority of the population support increased cruelty to vulnerable persons. Perhaps the easiest way to condense this ethically compromised ‘humanitarian’ policy is to ask: what is the cost of this policy? Is it justifiable to inflict harm onto those individuals in the aim of preventing harm to others?

Amy Constable is an Honours degree candidate at the Australian National University, and was a 2013 summer fellow of the Yale University Interdisciplinary Center for Bioethics.

Thinking Ahead, Preventing Tragedy

By: Mohini Banerjee

When natural disasters become central to bioethics discussions, it usually invokes a public health lens. Furthermore, the ethics involved concern disaster response, otherwise known as the aftermath. As detailed in Sheri Fink’s Five Days At Memorial, ethical quandaries arose when they were unable to evacuate certain patients from a flooded hospital. Health care professionals faced the demand to both create and execute a moral equation determining who could survive if moved and who would most likely survive. In the midst of Hurricane Katrina’s wrath, some doctors euthanized patients that could not be evacuated, saving them from languishing in agony as their machines failed. These physicians had some ethics training, but nothing that could have prepared them for that situation.

If we had to make difficult decisions in the midst of a disaster, what would we choose? During Hurricane Katrina many also took to the streets to find food and services when no help came. This led to horrific police and civilian violence. The racial and socio-economic implications of the fallout in the Gulf states only add to the tragedy. Although there are immense problems with the response to Katrina, we must also consider disaster preparedness. Foresight and energy could preempt and thus mitigate many of the worst disaster outcomes.

One difficulty in the ethics of disasters, as opposed to issues that arise in clinical settings, is that one cannot assume a controlled environment. There is no time to consult an ethics board, family members, or the courts. Disaster situations involve technological and communication failure on massive scales, such as falling telephone lines and power outages. Health care professionals also grapple with their own safety in ways foreign to most instances of medical care. For example, as Fink outlines in her book, many of the doctors at Memorial struggled with dehydration and injuries themselves from the hospital conditions. Lastly, national and state-based plans often cannot be implemented on the local level, lacking a detailed understanding of the community’s needs. For all these reasons, work done ahead of time could insure fairer outcomes in the aftermath.

Disaster preparedness is not a new phenomenon, and it would be foolhardy to dismiss the long efforts to mitigate ensuing chaos. Yet, in the world of ethics, how we prepare is less discussed than what happens when the chaos is in full force. What I suggest is a closer look at the methods for protecting ourselves and our communities when the unimaginable hits. The principles that govern disaster response, such as the responsibility to provide each person with life-saving care and protection, will only go so far. Since disasters often undermine the infrastructure facilitating medical care, evacuation, or housing, it is especially important to implement community-based initiatives to meet these needs.

The San Francisco partnership, established by Mayor Edwin M. Lee this past summer, epitomizes a community ethic in disaster preparation. It is a coalition between the Department of Emergency Management and Bayshare, a collection of sharing economy organizations. The partnership insures that during disasters people could use sharing economy mechanisms for free. Services include Lyft, a ride-share service that would transport emergency medical care and basic supplies. Another is the room rental scheme, Airbnb, which provides housing for people with nowhere to go. Providing these services in a disaster’s fallout would use the community’s resources to help itself. The San Francisco model demonstrates how members of the local community could use their resources to aid one another.

Although internationally recognized ethics standards for disaster response exist, preparedness is seldom discussed considering equality or fairness. Oftentimes preparing for disasters is left to the government or to the individual, such that those with less lose out. Further, the obligations of individual families extend beyond themselves and complying with the government’s safety measures. Strategies, such as San Francisco’s, which distribute much needed and underutilized resources facilitate a community’s ability to help itself.

It is not only preferable, but ethically necessary, to have a system in place that ensures sharing resources. Governmental bodies should not be the sole providers of resource planning. Community members understand best what is available locally and are situated to help first responders prevent harms within a chaotic situation. While each person will first provide for her own family’s safety, the next considerations should extend to those in one’s proximity. Preparing as a community will help foster social cohesion, which again feeds back to those difficult decisions. Gaining more responsibility for ourselves and for those around us can avert the desperation that so many have already suffered.  

Mohini graduated from Smith College in May 2013 and is a research assistant at The Hastings Center, an independent non-profit research institute in bioethics. She founded Bioethx Under 25 in January and acts as Editor in Chief. For interest in the blog please email her at bioethicsunder25@gmail.com.