Hi fellow PHIL 116 classmates and bioethics blog readers! I recently watched the short film, Extremis, on Netflix and as it is both a quick watch and very relevant to our course, I recommend it to all of you! To get an idea of the film, the trailer is below:

In a mere 24 minutes, Extremis follows the lives of a few patients and their families who are on breathing tubes, feeding tubes, and other forms of life support. The filmmakers did an excellent job demonstrating the opinions and challenges faced by physicians, surrogate decision makers, and the patient’s themselves. It addresses patient autonomy (or lack thereof) of patients who may not be able to express their end-of-life wishes. It also demonstrates the tug between prolonging life, which may do more harm than good, and ending it, which may have other ethical implications.

*SPOILERS AHEAD*

I found it fascinating that the different families, all with similar situations, each had a different opinion on how to treat their dying family member. For example, in Donna’s case, her family opted to remove her from the breathing tube and she died one day later. This decision, while challenging and emotional, was the right decision in my opinion. As shown in the documentary, Donna communicated a clear dislike of the breathing tube and a general understanding that if removed from the tube, she would die. Her family also informed the doctor’s that she had discussed end-of-life care before and was comfortable with removal of machine support.

However, in Selena’s case, her daughter equates removing life support with murder and so her mother is hooked up permanently to a breathing machine and dies six months later. A family of strong faith, Selena’s daughter and brothers are hoping for a miracle. However, when we look at these cases, I wonder if those extra six months actually brought joy or benefit to the patient herself or simply removed the guilt from her surviving family. The film states at the end that she survived with a few periods of consciousness – but did that add to her quality of life?

All in all, it was a very thought-provoking film for me as we have been discussing these types of issues the entire semester. I encourage you all to watch and post your thoughts below!

I was thrilled to see that this case study was assigned as I recently watched the trailer for a new HBO film about this exact case, The Immortal Life of Henrietta Lacks:

As a young scientist myself who has utilized cell culture techniques, I find this case so exciting. The ability to grow these immortal cell lines is essential in aiding advancements in biomedical research. As the case mentions, HeLa cells, the first immortal cell line from patient, Henrietta Lacks, aided the development of the polio vaccine and numerous Nobel prizes (Thomas, 2014). But, with every case there is a ethical dilemma. So, what’s the problem here?

Despite the amazing breakthroughs due to Henrietta Lacks’ cells, her family – a poor family with inadequate health care – never knew about the use of their mother’s cells until science journalist and author of The Immortal Life of Henrietta Lacks, informed them of their mother’s scientific contribution. As they were uninformed, they never directly benefited, financially or otherwise, from their mother’s cells. As Henrietta’s daughter points out, “If our mother’s cells done so much for medicine, how come her family can’t afford to see no doctors?” (Thomas, 2014).

Thomas raises a few key ethical questions at the end of the case. First, he asks if patient identities should be protected. The answer is a clear “yes” from me. While HeLa is “vague”, it was still specific enough to be traced back to the patient. As the Hayes Evidence blog explains, “Consider for a moment how you would feel if your complete genetic make-up was made available to anyone who wanted to look at it. That’s what happened earlier this year when the entire HeLa genome sequence was published in the journal G3: Genes, Genomes, Genetics and made available without restriction” (Hayes Evidence Blog, 2013). While some of us may think it would be cool to have our cells be “famous” (I personally do!), it is still a violation of patient privacy and could have unwanted implications for her surviving family members.

The second question raised in the case regards patient consent. At the time, Henrietta’s family was unaware of how her cells would be used. While there is no harm to the person directly if the cells are used for research, if family members are uninformed or have misconceptions about scientific research, their concerns should be addressed. However, if a patient’s cells – like Henrietta’s – see promise in research, I do not see a problem with using them as long as 1) there is no harm to the patient and 2) the patient’s privacy is protected as stated previously.

The third question is a little more conflicting. The authors ask if companies should be able to profit from cultured cells. Cultured cell lines are sold often as they are used in labs across the world. I do not see a problem with profiting from cells because in my mind, they are now more of scientific tool than a piece of a person. I think the larger problem here is that Henrietta’s family did not receive any recognition or benefit. As the New York Times explains, “It had never occurred to anyone to ask permission to take their mother’s tissue, tell them that her cells had changed scientific history or even to say thank you. And certainly no one had ever suggested that they deserved a share of the profits” (Grady, 2010). Because Henrietta never knowingly donated her cells, I think the family should have been informed and recognized for their mother’s gift to science.

The fourth and final question raised by Thomas asks if people should let their cells or tissues be used in scientific research. As a supporter of biomedical research, I say yes. However, I do think that the patient and/or the patient’s family should be informed of the potential uses of the cells. However, there are exceptions. Some people are opposed to certain types of research – perhaps due to religious beliefs – and would feel uncomfortable consenting to a donation. From the perspective of a scientist, the more cells the better! But, if we are going to respect patient autonomy, they should at the very least be informed and if they are strongly opposed, they should be allowed to make that choice.

In hindsight, I think it was right to take the cells from Henrietta Lacks. The benefits to society – supporting the principle of justice and the utilitarian point of view – outweigh individual harm. However, the WAY they took the cells from Henrietta was not favorable. Her family should have been informed and recognized for their mother’s contributions early on in the process. Eager to hear your thoughts!

Grady, D. (2010). Second Opinion – A Lasting Gift to Medicine That Wasn’t Really a Gift. New York Times. 

Hayes. HeLa Cells, Patient Privacy, and Biomedical Research. Hayes Evidence Blog. 

Thomas, J. (2014). Well & Good. Broadview Press.

As we know, respect for patient autonomy is a core principle in biomedical ethics. It recognizes a slew of patient rights, including their right to informed consent and their right to refuse treatment. In principle, it ensures respect for the patient’s informed decision, whether it agrees with the physician’s recommendations or not. And, in the case of disagreement between patient and physician, doctors reach a critical point and ask themselves, “do I intervene?” Some, on the principle of patient autonomy, choose noninterference, stepping back and giving their patient’s the freedom to make their own choice. But, does this truly respect their autonomy? In Terrance Ackerman’s article,  Why Doctors Should Intervene, he argues that noninterference does not respect patient autonomy because it does not account for what he calls, the “transforming effects” of a patient’s illness.

Now, you might be thinking, if respect for patient autonomy places nonintervention at its core, Ackerman’s argument is counter-intuitive. However, it makes sense in practice. Take patient competency. As Ackerman explains, certain constraints caused by a patient’s illness alter their ability to make a fully autonomous decision. These barriers can be physical, cognitive, or psychological, such as depression, anxiety, or even simple misunderstanding. He gives multiple examples of patients who, due to some impairment, can no longer make a decision and need a surrogate decision maker. In these cases, it is clear that intervention is justified because these patients are unable to make an informed decision. However, does this truly violate patient autonomy if the right to autonomy is not there in the first place? From previous discussions based on the writings of Beauchamp and Childress, we know that a patient’s right to autonomy is revoked if they are marked incompetent. So, in these cases, interference does not really violate anything at all. Noninterference, however, would not be in the patient’s best interest.

Take the anorexia case presented for our midterm. Bear with me now, as I know many of us disagree on which actions are justified. However, if we look at the case in favor of force feeding on the principles of beneficence and nonmaleficence, we see that intervention was necessary to save her life and in a sense, to give the incompetent patient her competence again. Ackerman mentions that loss of control is one of the worst things for a patient, so in cases of incompetency, is it warranted to remove patient control on the onset in order to fully restore patient control later on? In the force feeding case, for example, is it justified to go against her wishes for a short period of time in order to restore her to a healthy state of mind in the future?

If this is not pulling on your moral heartstrings already, it gets even more murky when the patient is competent. Some fully-competent patients (in terms of an absence of a debilitating cognitive or psychological illness) still succumb to bad decision making. Often, we put blind trust in our physicians because we think they know best. As Ackerman states, “many patients relinquish their opportunity to deliberate and make choices regarding treatment in deference to the physician’s superior educational achievement and social status. (“Whatever you think, doctor!”).” If a doctor takes their word and simply decides without any further discussion, a form of hard paternalism and noninterference, they violate patient autonomy (in the sense that they violate their right to an informed decision). Sure, the patient makes the decision to trust their doctor, but it is the doctor’s responsibility to be skeptical of this blind trust – especially when the patient has not heard all of the details. Ackerman suggests that doctors should “seek to neutralize” the constraints (whether big or small) so they may be more autonomous in future decisions.

Overall, patient autonomy should be respected. However, it can be respected in unconventional ways. Sometimes that is accepting the patient’s informed refusal, like in this case, while other times it is intervening to ensure the patient is competent and qualified to participate in fully autonomous decision-making. This was an interesting read for me and I look forward to hearing your thoughts!

REFERENCES

Ackerman, T. (1982). Why Doctors Should Intervene. Hastings Center Report, 12(4), pp. 14-7.

Beauchamp, T. & Childress, J. (2001). Principles of Biomedical Ethics. Oxford University Press.

Thomas, J. (2009). Well and Good. Broadview Press, 4.

It is rare to hear the words “compassionate” and “homicide” in the same phrase. However, in the case of Tracy Latimer, a so-called “compassionate homicide” ended her young life. In 1994, Tracy’s father, Robert, murdered Tracy to relieve her from her life of suffering due to severe cerebral palsy. Three years later, he was issued a constitutional exemption from the typical penalty for second-degree murder, reducing his sentence from life in prison to a mere two years. This court ruling is controversial, leaving us with important questions about the implications of excusing Robert Latimer’s “mercy killing” of his 12-year old daughter (Thomas, 2014).

While Robert’s actions cannot be undone, this case begs us to ask: was it morally right to kill Tracy with the intention of freeing her from pain? In order to answer this question, we must understand the facts of the case. First, Latimer believed killing Tracy was the right thing to do, arguing that her quality of life was so poor that death itself was a better alternative. It is clear that Robert’s actions were in good faith. Described by the judge as a “loving and protective parent”, Robert had his daughter’s best interests at heart. Or, at least, what he thought were his daughter’s best interests.

As discussed in the case, there is a general consensus that he had good intentions; however, his intentions do not make this action morally right. In fact, killing Tracy was an extreme example of surrogate decision-making gone wrong. Because of Tracy’s disability, she was unable to express her wishes, giving the decision-making role to her parents. However, how is Robert positive that this is what Tracy would have wanted if she does not have the capability to express it?

This uncertainty is at the heart of why Robert’s actions were morally unjust. Just because Tracy lacks what most of us could not imagine living without (the ability to talk, walk, and feed herself) does not mean her value as a person is any less than someone without a disability. Furthermore, Robert can not be sure that her quality of life is diminished, either. How do we know she did not enjoy life in her own way? In fact, the very definition of “quality of life” as defined by the WHO is the “individual’s perception of their position in life”, not the perception of someone else (WHO, 1997). Therefore, it is not Robert’s place to decide when her life should be over, as he cannot possibly know for sure that this is what she wants.

Robert is not alone in this viewpoint. It is not uncommon for the able-bodied to perceive their own quality of life as higher than that of a disabled person. For example, a survey of emergency medical professionals found that only 17% believed their quality of life would be average after a severe spinal cord injury, compared to 86% of actual survivors (Senelick, 2013). In this case, we have to remember that these types of pessimistic attitudes are personal opinions and do not justify Robert’s actions.

The implications of Robert’s sentence in this case extend far beyond the life of his family. Advocates of those with disabilities worry this type of treatment will lead us down a slippery slope where treating people with disabilities as “less than” the able-bodied is justified. As Pat Danforth of the City Council of Canadians with Disabilities states, “We’re telling every senior citizen, every quadriplegic, anyone injured in a car accident that their life is of diminished value” (Thomas, 2014).

Some may argue that Tracy’s quality of life was indeed diminished by the extreme pain she experienced. There is debate on whether her pain was continuous or situational. However, Robert’s actions are still unwarranted for a few logistical reasons as well. First, this is not an act of assisted-suicide, but one of non-voluntary euthanasia. Choosing to kill Tracy in the back of his truck is an active decision, making him accountable for his actions. However, if Tracy were to be arrested during a surgical procedure and her parents opted to file a DNR order then this passive act of non-intervention would be better justified. It may seem like the two are similar; however, it is more a question of the immediate harms to Tracy herself. In this case, Tracy was not in any mortal danger the day her father killed her. Second, Robert did this act alone without consulting his wife or medical professionals about alternative options. As Arianna states in her blog post, he completely bypasses his wife’s say in this life-changing decision. If he were in this situation again, he could discuss his concerns and find a more humane and less rudimentary way to rid his child of her pain. However, it should not have been up to him.

In conclusion, Robert Latimer’s actions were morally wrong even though his intentions were in good faith as he violated the principle of autonomy and nonmaleficence. If other cases like this arise in the future, keep these words in mind: “There is great danger if we allow ourselves to view the disabled as people whose lives are not worth living” (Senelick, 2013).

REFERENCES

WHO. (1997). Measuring Quality of Life. WHOQOL, pp. 1. http://www.who.int/mental_health/media/68.pdf

Senelick, R. (2013). Reconciling Life and Quadriplegia. The Atlantic. https://www.theatlantic.com/health/archive/2013/12/reconciling-life-and-quadriplegia/281821/

CBC News. (2010). ‘Compassionate homicide’: The law and Robert Latimer. CBC News. http://www.cbc.ca/news/canada/compassionate-homicide-the-law-and-robert-latimer-1.972561

Thomas, J. (2014). Well and Good. Broadview Press, 4th edition.

In October of 1973, Sam Shoeman was diagnosed with terminal cancer and given three months to live. Just after New Year’s, he passed away. However, an autopsy revealed that his original liver scan was faulty and his tumor was so small it couldn’t possibly have killed him. His doctor could not determine the cause of death stating “[Shoeman] didn’t die from cancer, but from believing he was dying of cancer” (Pilcher, 2009). Today, doctors routinely cite Shoeman as a victim of the nocebo effect.

We are all familiar with the placebo effect, as we discussed it in class today. A patient takes a pill — which could simply just be sugar — and somehow they feel better! However, Psychology Today describes the placebo’s equally powerful and far less understood evil twin: the nocebo effect, or the unintended consequences of negative thinking (Barber, 2012). The nocebo effect has the potential to disrupt how we communicate with our doctors while demonstrating the true power of the human mind.

In Latin, nocebo translates to “I will harm” (Merriam-Webster, 2017). But it’s true power doesn’t only lie in linguistics. A 2011 article in the journal of Neuropsychopharmacology defines the placebo effect as a positive reaction that stems from the suggestion of benefits. Conversely, the nocebo effect is a negative reaction that stems from the suggestion of harmful side effects (Benedetti, 2011). For example, at the University of California, participants had electrodes strapped onto their heads and were told that the electric current may cause severe headaches. Over 67% reported headaches; however, not a single volt of electricity was produced (Fox, 2012).

The fact that just mentioning negative symptoms can worsen a patient’s outcome challenges informed consent. Doctors are required to tell patients about all possible side effects of any treatment. But knowledge of the nocebo effect places physicians in an ethical dilemma, giving a whole new perspective to the old adage, “truth hurts.” In March of 2012, researchers at Harvard proposed a way to combat this ethical tug-of-war: contextualized informed consent (Wells, 2012). Dr. Colloca at the National Institutes of Health explains that when a doctor says “2% of subjects experienced this nasty side effect”, the patient will focus on the harm. But if the doctor says “98% of patients did not have that experience”, patients are less likely to experience the nocebo effect while still being informed (Berdik, 2012). In other words, the nocebo effect highlights the need for even more care when doctors and patients communicate.

While doctors may use their knowledge of the nocebo effect to alleviate pain, some may be more inclined to invoke the evil twin for less noble intentions. A 2011 article in Science Translational Medicine examines how the nocebo effect can intentionally induce pain. Participants were separated into 2 groups. Each was given a steady dosage of pain medication as heat was applied to their leg. Group 1 was told that the medication was starting. This knowledge doubled the positive effects of the medication. However, Group 2 was told mid-experiment that their medication had stopped and they may feel more pain (even though it didn’t actually stop). The nocebo effect was so strong that the group reported pain at the same level as a third group receiving no medication (Bingel, 2011). In other words, doctors used the nocebo effect to create pain that didn’t exist. Imagine this ability in the hands of interrogators bound by strict restrictions on physical harm. How might attitudes on torture shift if pain stems only from the mind of the victim?

In conclusion, the placebo effect (and now, the nocebo effect) present significant ethical questions surrounding the principles of respect for patient autonomy and nonmaleficence. Can we find a way to balance both of these principles? Comment with your thoughts!

REFERENCES

Pilcher, H. (2009). The science of voodoo: when mind attacks body. New Scientist.

Barber, N. (2012). Voodoo Death I. Psychology Today.

Merriam-Webster. (2017). Definition of nocebo. Merriam-Webster Dictionary. 

Benedetti, F.; et al. (2011). How Placebos Change the Patient’s Brain.

Fox, E. (2012). Rainy Brain, Sunny Brain: How to Retrain Your Brain to Overcome Pessimism.

Wells, R.; et al. (2012). To tell the truth, the whole truth, may do patients harm: the problem of the nocebo effect for informed consent. American Journal of Bioethics, 12(3), pp. 22-29.

Berdik, C. (2012). The nocebo effect: how health warnings make you sick. Boston Globe. 

Bingel, U. (2011). The effect of treatment expectation on drug efficacy. Science Translational Medicine, 3(70), pp. 70.

Photo Reference

The aforementioned case is a difficult one as it presents a moral dilemma between two guiding principles in conflict: beneficence and respect for patient autonomy (Beauchamp, 2009). In Marie’s case, she does not consent to the recommended surgery and the consequences could be lethal (Thomas et al., 2014). To add more complexity to this case, Marie’s family members urge the physician to operate against the patient’s wishes. So, what is the physician to do?

In order to provide an informed decision for this dilemma, one must consider both sides of the argument. I will first focus on the importance of respecting patient autonomy and discuss its applicability in this case. In its broadest sense, respect for autonomy is respect of the decisions of a competent patient (Davenport, 1997). So, what is competence? According to doctor of medicine and law, John Davenport, a physician must consider three aspects of the patient’s decision-making ability before determining their competence. These include (1) the demonstration of a clear understanding about the proposed treatment, (2) the ability to explain their decision in accordance with their values, and (3) consistent choices over a period of time (Davenport, 1997).

In Marie’s case, the evaluation of competency is a little more complex. Before her most recent diagnosis, Marie opted for the surgery that fixed one problem but led to another. Until Marie was notified of the need for a second operation, she appeared “rational and sensible” (Thomas et al., 2014). However, immediately after she learned of the necessary treatment, she refused to give consent, even after the surgeon explained the deadly alternative. Her reasoning for refusing the surgery was due to her mistrust in healthcare professionals. Up until now, Marie is meeting the 2/3 qualifications for a competent individual. She has been informed about the procedure, explained her reasoning, and is consistent with her choice. However, it is unclear if she has a solid grasp of the benefits of the treatment as her thoughts may be muddled by her fear and distrust.

Soon after, her family arrives and asks to override Marie’s decision. Most notably, her son states that his mother is exhibiting abnormal behavior and believes she does not fully understand the consequences of her decision. This is where the physician’s determination of her competency comes into question. Does Marie truly understand the impact of her refusal of surgery or is she simply afraid of another surgical mistake? Does her distrust in the surgical staff warrant her refusal of a lifesaving surgery?

In this case, it would be ideal to give Marie some time to calm down and really consider the impact of her decision. However, if a quick decision was necessary, I would proceed with the surgery for two reasons. First, I believe Marie is not in the right mind to make this decision. Even though she was determined to be sensible early on, her response following the surgical recommendation was inconsistent with her prior behavior. She was hostile, threatening to call the police and demanding to be released from the hospital. This sudden change in demeanor is inconsistent with her previous actions and it is most likely due to her fear and distrust of medical professionals. This is further evidenced by the son’s account of her abnormal behavior. As stated by the authors of Well and Good, “respect for autonomy of individuals does not require respecting their expressed wishes if these can be shown to be seriously out of character and irrational” (Thomas et al., 2014). In Georgia, for example, physicians can complete a 1013 form which authorizes involuntary transport to an admitting facility (Blow, 2016). To be eligible for this, the individual must meet one or more of the following criteria: recent threats toward others, recent acts of violence toward oneself, or the presentation of an “imminently life endangering crisis to self because he/she is unable to care for his/her own health and safety” (Blow, 2016). In my opinion, Marie meets the first and last criteria, which gives the physician a justified reason to override patient autonomy in this case. The second reason I would proceed with the surgery stems from the principle of beneficence. As this is a life-threatening condition, it is the duty of any physician to help the patient and relieve them from pain. As supporters of the 1013 form assert, it is in the patient’s best interest to save their life, even if that means denying their right to self-determination (Blow, 2016).

REFERENCES

Beauchamp, T. & Childress, J. (2009). Principles of Biomedical Ethics. Oxford University Press, 7, pp. 13.

Blow, R. (2016). The Ethical Use of 1013s in Georgia and Client’s Rights. Development Counts. Retrieved from http://developmentcounts.com/ethical-use-1013s/

Davenport, J. (1997). Ethical Principles in Clinical Practice. The Permanente Journal. 1 (1), pp 21-24. Retrieved from http://www.thepermanentejournal.org/files/Summer1997/principles.pdf

Thomas, J.; Waluchow, W.; Gedge, E. (2014). Well and Good. Broadview Press, 4, pp. 71-76.