The Case of Cassandra C: Finding Clarity and Responsibility as a Mom and a Bioethicist

by Amy Bloom, Bioethics Program faculty

I have been reading the latest news regarding Cassandra C., the teen with Hodgkin’s lymphoma who refused treatment but was forced into receiving it by a Connecticut Supreme Court ruling. As a mother and a bioethicist, these are the times when reconciling my personal opinions with my professional experience can be most challenging. Many of my “mom” friends were shocked and horrified by the image of a young woman being restrained to a bed, forced to undergo treatment. They had visions of a screaming pained girl, a mother helpless to save her child, and “big brother” dispensing poison to an innocent girl whirled through our collective mind.

From an ethics standpoint, it is generally wrong to force medical treatment on anyone, particularly when there are cultural and religious factors to be taken into consideration.  I am reminded of cases involving Christian Scientists who believe that any “traditional” medical intervention is contrary to their cultural and religious views.  Oftentimes, in cases involving a seriously ill child, parental rights are legally overruled and children are “forced” into treatment. Sometimes, the state may assume its parens patriae rights and substitute its own control over children when the natural parents appear unable or unwilling to meet their responsibilities, or when the child poses a problem for the community. Further still, the state can mandate treatment in order to assure proper care, as established by Jacobson v. Massachusetts in which the US Supreme Court upheld compulsory vaccination laws.

So, on the one hand we argue it is unethical to force treatment. On the other hand, we do sometimes make the decision to mandate care, particularly when children are involved. The question becomes: how does one manage the rights of children and of parents, while also maintaining the responsibility of the state to protect children?

First, we must consider what is in the “best interest” of the patient while still considering individual choice. Such cases are clearer when an outcome like death is imminent.  The case of the 29-year-old young woman with terminal brain cancer who refused treatment and moved to Oregon to end her life is a good example.  Most ethicists supported her decision, although there were some who disagreed with “ending one’s life” so directly.  In her case, this was a quality of life issue. Treatment provided no long-term benefit. It only prolonged her pain and suffering while delaying the inevitable. From a legal perspective, she was also an adult and capable of making her own decisions.

Cassandra’s case is different. Chemotherapy has a very good chance (~85%) of curing her. I personally struggle to understand how, when faced with these scientific facts, she chose to refuse care. I am troubled by the daughter’s decision-making process, and I wonder about the relationship between the mother and daughter. Some of the words and the reactions make me wonder what, in fact, the young woman believes to be true. As far as I can tell, there were no religious or cultural beliefs behind her renouncing medical care.  Seeing chemotherapy as “poison” is a bit odd, truthfully, and her claim to be “ready to die at 17” is even more disturbing, especially given that there is treatment available.

My ‘gut’ tells me that there is something askew in Cassandra’s belief system. The things she claimed to fear as a result of chemotherapy – loss of fertility, side effects to other organs – may not happen. Moreover, if she’s dead then these are no longer an issue. These side effects are also manageable. She can prevent a potential loss of fertility by freezing some eggs. The emotional and psychological effects of chemotherapy can similarly be managed with proper medical and palliative care.

Some bioethicists have suggested this was a missed opportunity for an ethics consultation. I agree, and then some. This was not just a missed opportunity for an ethics consultation, this was a missed opportunity for education, communication, support and compassion. This was a missed opportunity to reach out, inform, and support a teen navigating the difficulty of deciding how to treat a life-threatening illness. This was a missed opportunity to understand how she came to the notion that “chemo is poison” or that “being ready to die at 17” is something worth talking about.

For argument’s sake, let’s assume Cassandra made her decision to refuse treatment with all the facts.  Let’s assume that the medical providers explained all the details to Cassandra and she still chose to renounce care. We then have to ask about Cassandra’s mother, the woman who is still legally responsible for her care.  Why would she not choose the treatment most likely to cure her daughter? Some claim Cassandra’s mother showed great bravery, love and compassion in standing by her daughter’s decision to refuse care. I struggle with this. I feel that a mother’s responsibility is to advocate for the best care for her child. Unlike the 29-year old with terminal brain cancer, this treatment will save Cassandra’s life.

This case has caused me to reflect on the implications of a government that mandates the care I give (or choose not to give) to my child, under the assumption that I am of sound mind and can make proper choices about my child’s health.  I trust science, and I trust myself to be a critical thinker.  I believe that there are certain health care issues that should be mandated – vaccinations, for one – because the science is clear (and the information against it is completely faulty and warped by media sensations like Jenny McCarthy). I also believe that I have a moral responsibility to take care of my community, and that includes my child. Sometimes that will require me to do things that are uncomfortable, against my nature, and that may even cause my daughter pain, but it is still the right thing to do. Not for me, but for her.

So, in this case, I come back to a single question: Why?  If I could understand why Cassandra chose to forego chemotherapy, and if I could believe that her mother was thinking “in the best interest” of her child, then I would be more comfortable with the decision to refuse care. Until then, I hope that Cassandra lives a long and healthy life. I also hope that Cassandra, her mother, the medical establishment, and the bioethics community continue to have this conversation because our work here is certainly far from complete.

[The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Alzheimer’s Disease: The Forgotten Epidemic

by Sean Philpott-Jones, Director of the Center for Bioethics and Clinical Leadership

We hosted a conference on Alzheimer’s disease at the College last week, inviting a distinguished group of physicians, researchers, caregivers, advocates and policymakers to discuss the ethical and legal challenges of diagnosing and treating those with the disease.

These issues are particularly important to me. I have immediate family members who have been affected by Alzheimer’s disease, as patients and as long-term caregivers. I also carry a genetic trait known as APOE-e4 that makes me far more likely to develop the disease, and to do so at a younger age.

As someone whose career and self-worth are tied to my ability to think and write creatively, the very thought that I could slowly lose everything that makes me who I am terrifies me. I also worry about the huge personal and financial impact that a diagnosis of Alzheimer’s could have on my family.

Those living with Alzheimer’s, their families, and their friends also struggle with a myriad of practical issues as the disease slowly robs them of their memory, their thoughts, their speech, and their motor functions. They face difficult choices about treatment, independence, safety, long-term care, and end-of-life decisions.

There is also emotional toll. It is never easy to lose a parent, a sibling, a partner or a friend. But unlike patients suffering from other terminal illnesses, those with Alzheimer’s and similar neurodegenerative disorders die twice. They die mentally when their dementia reaches the point that they no longer recognize or remember family and friends. They are still alive physically, and may continue to live for many more years, but the person they were is gone. Family members are left to grieve the loss of their loved one while still caring for the stranger that they have become.

This is the cruel reality of Alzheimer’s. It is also a reality that most of us will have to deal with in the years that come.

The US Centers for Disease Control and Prevention (CDC) ranks Alzheimer’s as the sixth leading cause of death in the United States. An estimated 84,000 Americans died of the disease in 2010.

But that is likely to be a gross underestimate of Alzheimer’s physical toll. According to a recent study conducted at Rush Alzheimer’s Disease Center in Chicago, the number of deaths that are actually attributable to the disease may be 5 to 6 times higher. That would mean that nearly half-a-million Americans died of Alzheimer’s in 2010, making it the third leading cause of death in the US. Only heart disease and cancer took more lives.

Currently, 1 in 9 Americans aged 65 or older has Alzheimer’s. That proportion rises to nearly 1 in 3 for those aged 85 and older. That translates to 5 million people in the United States who have the disease, a number that is expected to triple over the next few decades with the demographic changes associated with the aging of the baby boom generation.

Alzheimer’s is already the most expensive disease in the US. We now spend over $200 billion dollars a year caring for those with Alzheimer’s including $150 billion in Medicare and Medicaid. About half of all nursing home residents are people with Alzheimer’s disease or other neurodegenerative diseases, most of who rely upon Medicaid to pay for their long-term care.

But that too is likely a gross underestimate of the financial toll of this disease, as it fails to take into account all of the unpaid care provided by family and friends. Nearly 18 billion hours (or $200 billion) of free care was provided in 2013. Most often than not, this care was provided by women who left the workforce in order to care for an ailing spouse, parent, or sibling.

Unless we do something to reverse this tide, Alzheimer’s is going to bankrupt us financial and emotionally. We can’t reduce the economic cost of caring for those with the disease, so the only solution is to find new ways of slowing or preventing the onset of dementia. We need more research that is aimed at developing new cures and treatments.

Despite this, funding for Alzheimer’s research lags considerably when compared with other diseases like breast cancer, stroke, heart disease and HIV/AIDS. Although Alzheimer’s now kills nearly as many people as cancer, for example, the federal government spends twelve times as much on cancer research as it does on Alzheimer’s.

This has got to change. We need more bills like the Alzheimer’s Accountability Act, introduced in 2014 by Representatives Paul Tonko (D-NY-20) and Brett Guthrie (R-KY-2). We need to provide more funding for Alzheimer’s research, but we need to do so in a way that doesn’t rob other research initiatives (including efforts to find a cure for cancer) of desperately needed resources.

Unfortunately, this is unlikely to happen. Our Congressional leaders are too focused on cutting costs, including slashing the federal budget that supports biomedical research, to recognize the looming crisis. Alzheimer’s will, I fear, remain an overlooked and forgotten epidemic until it is to late intervene.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on May 22, 2014, and is available on the WAMC website. The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Death Panels are Back, and They Want to Pay Grandma to Die

by Patricia Mayer, MD, Bioethics Program Alumna (2009)

Run for the hills: federally-funded Death Panels are back!

Ok, that was a bit of a cheap shot.  But many of us in medicine – especially those in hospice and palliative care – are still incensed by the “Death Panel” scandal.

As many know, the myth of the “Death Panels” almost derailed health care reform in the Summer of 2009.  Sarah Palin, one-time candidate for Vice President, posted a scathing critique of health care reform on Facebook. In that critique, she decried the inclusion of federal “Death Panels” as part of the Affordable Care Act. In a follow-up post, Ms. Palin specifically mentioned Section 1233 of the bill, implying that this section sanctioned the creation of these panels, whose purpose would be to decide who was “worthy of health care”.  The claim went viral. Within a couple of weeks, 86% of Americans had heard of the phrase “Death Panels.” Half of those actually believed that they existed.

In fact, no section of the Affordable Care Act (then or as passed into law) included any determination of which patients were or were not worthy of health care. As proposed, the oft-cited (and maligned) Section 1233 simply provided coverage under Medicare for advance care planning consultations.  Every five years, a physician would be able to bill Medicare for a visit whose purpose was to discuss advance care planning with a patient.  As this Section specified, doctors could bill for discussions of “the level of treatment indicated [which] may range from an indication for full treatment to an indication to limit some … specified interventions”.  So the charge that these visits were to tell the elderly “ how to end their life sooner” was clearly untrue.  There was no language at all that sanctioned limiting the care provided to patients. Rather, these voluntary visits were simply designed to help patients complete advance directives (ADs), should they wish to do so. Patients were free to specify in their advance directives that they wanted no limitations on treatment, or they could specify when they wanted to forgo particularly invasive treatments. It was their choice, not their physician’s.

Advanced directives are considered vital in providing proper care and treatment, particularly the types of care people want and the types of treatments that they do not want.  The Joint Commission – which accredits more than 20,000 health care organizations and programs in the United States – actually requires hospitals to inquire about ADs at every admission, to honor these directives when patients have them, and to offer educational materials and assistance in drafting these documents for patients who do not already have them.

Despite claims to the contrary, Section 1233 of the Affordable Care Act simply attempted to make the existing advance planning process simpler by encouraging patients to have these conversations with their primary care physicians.  Having such a conversation is often easier as a healthy or healthier outpatient than as a sick or dying inpatient. However, public outcry about mythical death panels was so great that the provisions of Section 1233 were left out of the Affordable Care Act when it was signed into law in 2010.

So, why were we who work in hospice so upset about the death panel myth? Quite simply, the notion of federal death panels fed into misconceptions about hospice that we’ve tried for years to erase.  Many people already think that hospice provides (and even encourages) euthanasia, a claim that is simply not true. In addition to fighting the “hospice kills people” myth for years, suddenly we also had to confront the “death panels” myth.

Thankfully, the Obama Administration has been determined to encourage and support advance care planning. It has managed to do so with little fanfare or notice. In January 2011, for example, Medicare began paying doctors for advance care planning discussions (just as Section 1233 had intended) in the context of the newly covered annual wellness visit.

But now we have a new twist on this old story.  Conservative Senator Tom Coburn (R – OK), a physician himself, has introduced legislation that would actually pay eligible Medicare beneficiaries $50 if they complete an advance directive. Patients get $75 if they do so online.  This legislation would also establish a process for accrediting advance directive vendors, and it would create a registry of advanced directives accessible by clinicians, institutions, and health care proxies.

Had this legislation had been introduced by a Democrat in early 2009, Ms. Palin would likely have complaining that the federal government is bribing patients to forgo treatment. The cacophony would have been deafening: We are paying Grandma to die!

If we are serious about wanting people to have ADs, however, we must consider this idea carefully.  As angry as those of us who work in hospice are about the “death panel” claim, we need to get over our bitterness. This idea deserves fair consideration, even if it originates from the “death panel” party.

Senator Coburn’s proposal is a good one. It would increase the number of patients with advance directives, empower both them and their health care providers.  Patients are more likely to get the types of care they want. Health care providers will also have guidance on the types and limits of care desired by patients.  Too often patients admitted to the hospital lack decision-making capacity. Without well-informed surrogates or advance directives, the clinical team has no guidance about an individual’s treatment preferences. So they tend to err on the side of caution, doing everything and anything they can to prolong a patient’s life. This scenario often leads to patients receiving a great deal of invasive, hi-tech, and sometimes inappropriate treatments that they may (or may not) have wanted.

We know we need to increase the number of patients with advance directives, so why not try Coburn’s idea?

[The contents of this blog are solely the responsibility of the author and do not represent the views of the Bioethics Program or Union Graduate College.]

Rated NC-17: Why Voluntary Euthanasia of Children is Dead Wrong

by Dr. Patricia Mayer, Bioethics Program Alumna (2009)

Belgium just became the first country in the world to extend the option of voluntary euthanasia to children under the age of 12.  Voluntary euthanasia of adults has been legal in that country since 2002, but the Belgian parliament has now decided to remove age restrictions from the current law.

This decision raises both ethical and medical questions.  For a patient to qualify, the current law in Belgium requires the patient to make the request, be in unbearable pain, be assessed by two doctors and a psychiatrist or psychologist, and have consent from their legal representative (usually the parents in cases involving children).

Medically, the phrase “unbearable pain” makes little sense in this context.  Physical pain can be controlled with current medical therapy.  It is true that sedation to unconsciousness might be required to achieve complete pain relief in rare cases, but it is not true that physical suffering cannot be controlled. From a physical standpoint, the phrase “unbearable pain” is ambiguous and inapplicable.

Unbearable mental pain or suffering is different, and palliative care cannot guarantee relief from that kind of suffering in all cases. However, the determination that a patient is experiencing unbearable mental suffering must be made by a patient with decision-making capacity. As a society, however, we do not believe children, particularly those under the age of 12 have complete decision making-capacity. Their brains are not developed enough, nor do they have the life experience to always make rational choices.

This underdeveloped decision-making capacity is why we have laws stipulating how old children must be before they can engage in certain tasks or consent to specific acts, such as driving, drinking, voting, and serving in the military.  We rate movies to prevent children from attending those that we deem inappropriate because of extreme violence or sexual content.  We have statutory rape laws under which a child cannot legally consent to sexual intercourse under any circumstances (except marriage) until a specified age is reached.   We also do not allow children the right of refusal; they cannot refuse to be vaccinated, to go to school, to live with parents or guardians, or to accept needed medical treatment except in rare situations..

These laws exist because we believe underage children are not capable of making decisions of great magnitude, or decisions that might later prove harmful to them.  They are not capable of making autonomous decisions the way adults are, so we limit the autonomy of children in all kinds of ways.  Thus it makes little sense to allow a child, who cannot even choose what movie to watch, to request death.

This does not mean that we should not listen to children.  The terminally ill child who has “had enough” should certainly be involved in decisions to forgo further aggressive or life-prolonging treatments.  Such a request should be carefully considered and a decision reached in conjunction with loved ones and the medical team.  Terminally ill children, like all terminally ill persons, should have access to effective palliative care.

Grandma got it right: Johnny doesn’t (always) know what’s best.  Killing him at his request, no matter how ill he is, is surely not the right course of action.

[The contents of this blog are solely the responsibility of the author and do not represent the views of the Bioethics Program or Union Graduate College.]

On Being Amish

by Jacob Dahlke, Bioethics Program Alum (MSBioethics 2012)

Being Amish is a red herring.

I have an interesting history with the Amish community. You see, while living in SE Iowa I was homeschooled for three years of grade school. My mother, in addition to her primary profession, was also a midwife, and for reasons I am not entirely certain she worked a fair amount with the Amish community near us. I had the opportunity to travel with her on her prenatal visits with them, and would often help the men with chores. Granted, I was under ten years old during this time, so perhaps “help” is bit … ineffectual. I know this: I look back on that time fondly, and I feel a particular connection to Amish communities whenever I encounter them, whether in Iowa, Missouri, or Vermont. But this post isn’t really about me, or even about the Amish.

A 43-year-old pregnant woman (Mrs. M) is admitted to a rural hospital, with increased blood pressure and heart rate. She was found to have severe preeclampsia and prolonged preterm premature rupture of her membranes (PPROM), likely more than eighteen hours. These two conditions combined can be quite dangerous for both the mother and fetus. Mrs. M’s pregnancy was determined at the time to be 24 6/7 weeks – extremely premature. This pregnancy was complicated by four months of bleeding and swelling in the last two weeks. Mrs. M’s past medical history is significant for multiple miscarriages and stillbirths. (This was her 17th pregnancy, with seven surviving children.) She has no known primary care physician, and had not sought any prenatal care prior to this admission. Upon admission to the local hospital, Mrs. M and husband indicated that they did not want resuscitative measures for the baby upon delivery, which were consistent with their religious and cultural (Amish) beliefs. How ought the medical team respond?

Autonomy is a well-established principle in both law and medical ethics.  Patients with decision-making capacity (DMC) have the right to either accept or decline medical intervention in the context of their goals and values. Within the context of pregnancy, the mother’s autonomous wishes are sufficient to make decisions surrounding the pregnancy, which include the decision to continue or to terminate the pregnancy. Of particular note is that this is not any ‘regular’ pregnancy or potential delivery, due to the early stage of pregnancy. Many practice guidelines agree that any fetus less than 23 weeks has such low probability of survival that resuscitation ought not be attempted. Fetuses at 26 weeks are generally thought to have at least a 50% chance of survival (the basic definition of viability) and resuscitation is the default treatment. So there is this grey zone, between 23 and 26 weeks, which presents interesting and difficult challenges regarding decision-making. It not a period that is marked by singular events, as it is often recorded, as in ’23 1/7 weeks, 24 3/7 weeks’, etc. There is nothing definitive on any particular date, but it is instead more of a continuum of time, with medical confidence or certainty being at either far end of the spectrum.

Beneficence (to do good) and non-maleficence (to avoid harm) are also core principles, and they exist in dynamic balance with the principle of autonomy. Physicians are obligated to offer their best to patients, facilitating the two goals of medicine – the maximization of health and wellness and the alleviation of pain and suffering. At the same time, physicians are also obligated to avoid interventions that may represent an unreasonable or disproportionate burden (harm), unfavorable risk-to-benefit ratio, or those that are medically inappropriate. Patients may request things from us as they seek to further their autonomous goals, but it is the clinician’s domain to assess for the reasonableness of achievability in light of their professional duties and obligations.

In this case, Mrs. M is known to have a complicated past pregnancy history, with the present one similarly complicated. The deliberations and decisions on the part of the parents are likely based – at least in part – on their familiarity with having to make such decisions in the past. Mrs. M’s decisional capacity to make this request to limit treatment upon delivery was never questioned, and it is a decision backed up both by past decisions and by her religious and cultural perspectives.

Regarding the reasonableness of the request from the physician’s perspective, there is nothing in this case to automatically preclude the honoring of the request. However, in order to avoid harm in this case, it may also be prudent to continue to gather as much information as possible to ensure an adequately informed decision on the part of the mother. Some factors that may prove relevant (unknown at the time of this consult) may include a more accurate determination of the fetus’ gestational age, due to the approximated age being so near the edge of the acceptable age range for limiting resuscitation for premature infants. Additionally, state law may provide further clarification regarding the request or its subsequent response. Finally, further discussion with the parents (which was scheduled to happen after this consult) could further illuminate their goals and values, as well as a better understanding of this particular medical situation and its likely outcomes.

Easy enough, right? Well, no. Here is how the scenario played out. The medical team chose to resuscitate the baby upon delivery (via C-section), regardless of the parents’ request to allow for a “natural” course of actions. Additionally, the hospital filed a report with Child Protective Services in order to facilitate the transfer of the baby to a bigger hospital that could manage such a uniquely critical infant. The parents decided to accept the medical interventions and transfer, and the CPS report was dropped as quickly as it was filed. (I have no evidence that the two may have been related, but I suspect they were.)

Mr. and Mrs. M were preparing to cope with something they were all too familiar with: mourning the loss of an infant child. And now they are not. For as good of a thing as it sounds, it may not have been. And as much of a help as the medical community was trying to be, it may have a bit too … ineffectual.

[This blog entry was originally posted in slightly edited form on Mr. Dahlke’s blog on June 21, 2013. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

On Hunger Strikes

by Jacob Dahlke, Bioethics Program Alum (MSBioethics 2012)

“We will not allow a detainee to starve themselves to death and we will continue to treat each person humanely.” Lt. Col. Samuel House.

Under what circumstances can physicians treat their patients over their objections? Do prisoners (or more accurately in this case detainees) have a right to refuse medical intervention? How might a military physician reconcile a situation in which the two professional obligations directly conflict with each other?

Questions like these have arisen in the news recently in which military officials have dispatched medical officers to manage the treatment of detainees at Guantanamo Bay. I personally am troubled by my initial reading of these headlines, but upon my realization that it may have been a purely visceral response, I decided to evaluate the situation a bit more objectively, if possible.

Good ethics begins with good facts; one way to organize those facts is to compile them into four quadrants: medical indications, patient preferences, quality of life considerations, and other contextual features.

Lt. Col. House has indicated that 100 of the 166 current detainees are participating in the strike, although lawyers for some of the detainees said that the number was around 130. Let’s be clear on this: the lowest estimate is that 60% of the detainees are voluntarily withholding nutrition, or nutrition and hydration. The high estimate indicates 78% participation.  21 detainees are currently being fed with nasogastric tubes over their objections. Five of the participants are currently hospitalized, likely due to side effects of malnutrition.

The detainees have not been evaluated for decisional capacity. In a case where that has not taken place, one would presume that a person has the capacity to make their own decisions. Regardless of a person’s capacity to make medical decisions, all persons retain the right to refuse treatments. If a person refuses a treatment, then the physician (or other medical professional) has two choices: they can honor the person’s refusal and manage the person’s side effects of the refusal (malnutrition in this case), or the professional can treat the person over their objection. This is technically medical assault or battery, so a special provision must be made in order to ethically justify it. That provision is that the person is suffering from a psychological, psychiatric, or somatic illness that is interfering with the person’s ability to properly evaluate the medical decision. That is, if the person is too ill to appropriately refuse (they lack capacity), then we can be justified in treating this person over their objection in order to achieve their greater goal of survival or life prolongation. (Since they have not be sufficiently been evaluated for their capacity, one cannot determine whether their goal is to prolong their lives.)

If we cannot make a definitive assessment based upon the first two categories, we must use the latter two. First, a caveat: I am making assumptions and judgments. I try to make them as objectively as possible, but due the general lack of good facts in this case, it will likely be overall inadequate.

These persons are currently detained in a military prison. They have been there for the better part of a decade (many for longer). While they are technically in a legal limbo of awaiting a trial, there are many indications that there is no intent to ever do that. Translated: this is their life, for the rest of their life. The only other prospect is that they get transferred to another prison. For all other practical purposes, they can be considered prisoners convicted of any other crime: they are treated for illness, provided limited access to personal belongings, etc.

There are likely many cultural biases at play in this case, and probably too many to begin to consider. To some Americans the detainees represent the antagonists to our global goals and achievements. “They” attacked “us”, and therefore in this course “we” captured “them”. To others, the detainees represent all that is wrong with America’s relationship with the rest of the world. Muslim v. Christian. American v. the “Middle East”. Us v. them. I contend that all of these cultural biases, while real and present in this case, are irrelevant. What I find interesting instead is the cultural clash among the health care professionals. There is a culture associated with being a health care professional, one that highlights a fiduciary responsibility to reduce suffering, treat illness, and respect individuals. There is a culture associated with being in the military, one that highlights a fiduciary responsibility to provide security, to reduce or eliminated harm or threat of harm. The structures, processes, and outcomes of these two cultures directly conflict here. It is relevant to note that the news has indicated the arrival of Navy medical personnel included “nurses, specialists, and hospital corpsmen who are trained to provide basic medical care“, which indicates to me that the medical personnel did not include physicians. This is an important distinction, particularly if one wanted to criticize AMA president Lazarus’s letter to Secretary of Defense Hagel on the subject. Translated: Lazarus is opposed specifically to treating over objections if it is physicians who are asked to do it, but will not commit to objecting to the practice in general, since the medical personnel are not technically physicians (and therefore technically beyond the AMA’s scope). Classy. But I digress.

One partial justification for the feeding tubes is that some of the detainees (being force fed) have occasionally voluntarily eaten, when removed from the general population of other detainees participating in the hunger strike. A relevant question then is at what point does peer pressure- which still represents an individual’s autonomous decision- change to coercion, which includes a threat of harm to the person? And what if the situation were reversed, and there was peer pressure on detainees to stop their hunger strike? Would the military intervene in that case of ‘peer pressure’? Likely no, because it’s not the peer pressure that matters; it’s that the detainees are doing something (hunger strike) that the military doesn’t want them to.

Ethical principles to consider

For me, this situation abounds in contrasting ethical principles. The first surrounds the right of a patient to express their autonomy, balanced with the health care professional’s obligations to beneficence (doing good- like treating illness or reducing suffering) and non-maleficence (avoiding doing harm, such as standing idly by while a person’s decisions reduces the quality of their health). I repeat my interest in noting that the military personnel are not physicians. (It is surely worth exploring the professional ethical codes for the personnel, but not for this dialogue.)

There is an apparent conflict between beneficence and non-maleficence. This is only perceived however, because we don’t actually know what the detainee’s goals are. If the goal is to minimize suffering, and if living this way is worse than death itself, then it would be beneficent to allow this and harmful to prevent it. It would thus be an ethical violation to treat this patient over their objection. Thus, the military is keeping these people alive, against their wishes… do what with them? Keep them in this limbo state, presumably.

If however, the detainee’s goal is to protest their treatment, to highlight the numerous abuses and illegal that are being imposed upon them, then the detainee’s goal is indeed life prolongation. Their refusal of food and overall nutrition and hydration, then, represents an irrational decision. How can one want to live, and yet refuse nutrition which will prolong your life? Here is a well-written article on the perceived noble explanation by the military that they are preventing suicide.

There is additionally the role that justice plays in this case. If the goal is to prosecute these individuals for their presumed crimes, then I can see an argument to treating them over their objections in order to see them through their course of justice.

In a strictly medical setting, if a patient refuses a treatment, there is a medically ethical obligation to pause and reconsider patient’s goals; if he has capacity, we should honor patient’s right to refuse. To treat the patient with capacity is to violate his rights, thus conducting battery on the person (doing something to him that he doesn’t want). If the patient doesn’t have capacity, we still can’t do something to someone that doesn’t want it. We must go to court, and get special permission to break the law (do something to someone that they don’t want us to do).

But let’s face it, it won’t. This is Guantanamo Bay. The whole place is one big quagmire of questionably dubious if not full-on illegal activity. Its very existence is questioned by the UN as a breach of international law. But I have drawn enough breath for tonight, and clearly I am not the only one thinking about this.

[This blog entry was originally posted on Mr. Dahlke’s blog on May 2, 2013. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]