Physician Participation in Executions

Question: Should physicians participate in the execution of prisoners?

Answer:

A physician’s opinion on capital punishment is a personal opinion of that individual. However, as a physician he or she has the ethical responsibility to abide by the Code of Medical Ethics that governs the actions of those in the medical profession. The AMA’s position on physician participation in executions, which embodies the spirit of the Hippocratic Oath, is quite clear that “a physician, as a member of a profession dedicated to preserving life when there is hope of doing so, should not be a participant in a legally authorized execution.”[i] The AMA sees its role in protecting values and services that may otherwise be vulnerable in society because of overshadowing by government, as is the case for executions, or by the private sector.[ii] Despite the fact that physician participation at executions violates the basic tenet of the Hippocratic Oath and the position of the AMA, not to mention similar positions of other medical societies, physicians continue to participate and it is expected that their involvement will only increase in the future. Their rationale ranges from it is a legal procedure approved by a democratic government, to participation minimizes pain and suffering and therefore is in the best interest of the prisoner. Personal and societal values seem to trump their professional values. However, these arguments fall apart when examined and scrutinized from an ethical perspective.

Some have argued that the way to circumvent the dilemma of physician participation is to train other medical personnel, such as physician assistants, nurses, etc., to perform the same task as the physician. This argument is clearly illogical. It assumes that other health care professionals are less dedicated to the ethical ideals of the medical profession. One might assume that all health care professionals are bound by the same basic ethical standards such as “first, do no harm.” In fact, the current professional oaths and position statements of both the American Nursing Association and the American Academy of Physician Assistants prohibit member participation in executions on ethical grounds.[iii] Logic and consistency would dictate that all medical professionals are bound by the same ethical arguments and constraints. Other physicians have tried to argue that their participation in executions is beneficent because it minimizes the risk of a botched procedure and thus minimizes pain and suffering. However, it has been shown that lethal injection, while on the surface may appear to be a painless way to die, in reality may be far more cruel and painful than anyone even imagined. How any physician, who is dedicated to “preserving life when there is hope,” can argue that taking the life of a healthy person because the state commands it is in the patient’s best interest and does not conflict with the goals of medicine is beyond comprehension. Physician participation in executions is unethical because it violates the four basic principles that govern medical ethics: respect for persons, beneficence, nonmaleficence, and justice.

The fear of many is that some physicians have been co-opted by the penal authorities and state legislatures in this country to believe that physician participation is a civic duty and one that is in the prisoner’s best interest. In reality, these physicians are being used as a means to an end. They are being used by certain states to medicalize executions in order to make them more palatable to the American public and to prevent capital punishment from being declared unconstitutional because it is “cruel and unusual punishment.” A basic tenet of the principle of respect for persons is that one may never use another person as a means to an end. Legislating that physicians must be present at executions uses these physicians as pawns or means in order to legitimize capital punishment. This not only violates the rights of these physicians but violates the basic ethical principles of the medical profession and distorts the physicians’ role in society. The AMA and other medical societies should take a strong position that participation of physicians in executions is grounds for revoking a physician’s license. “Even though state legislatures may attempt to subvert this position by guaranteeing anonymity to physicians who serve as executioners, the risk of losing one’s license should serve as a deterrent.”[iv] Until the AMA and other medical societies back up their positions with concrete actions, the image of a “white-coated healer” will continue to be confused with that of the “black-hooded executioner.” This does not bode well for the medical profession or society as a whole, “because when the healing hand becomes the hand inflicting the wound, the world is turned inside out.”[v]      

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[i] Council of Ethical and Judicial Affairs, American Medical Association,” Code of Medical Ethics, supra note 24, at 2.06, p.18.

[ii] Emanuel & Bienen, supra note 3, at 922.

[iii] Baum, supra note 12, at 66. See also American Academy of Physician Assistants, Guidelines For Ethical Conduct For Physician Assistant Profession 8 (adopted May 2000), available
at http://www.aapa.org/images/GECIN-SERTATION.pdf. and American Nurses Association Position Statements: Nurses’ Participation in Capital Punishment (July 2001), available
at http://www.nursingworld.org/readroom/position/ethics/etcptl.htm.

[iv] Truog & Brennan, supra note 51, at 1349.

[v] Gordon, supra note 11, at 36.

Is the “Ashley Treatment” ethical?

Introduction:

Is it medically and ethically appropriate to shorten and sterilize a six-year old girl to make it easier for her parents to properly care for her now and in the future? This is the question that confronted Seattle’s Children’s Hospital when the parents of a six-year old girl named Ashley approached the Ethics Committee requesting approval for various procedures that would improve the quality of life of their daughter. Ashley, called the “pillow angel” by her parents, suffers from a developmental brain condition known as static encephalopathy. “She had a normal birth, but failed to develop, mentally and physically, for reasons doctors could not ascertain. . . The diagnosis means that her brain has been damaged and the addition of the term ‘static’ means that her condition will not improve. She will remain for the rest of her life with the mind of a baby”1. Her profound developmental disabilities and her inability to ambulate, provide numerous challenges for her parents and caregivers. If her growth could be permanently arrested while she was still small in stature, then according to her parents the benefits would give Ashley a better quality of life and allow her parents to continue to care for her at home. The Ethics Committee recommended the procedure to keep Ashley small. High-dose estrogen treatments over the last two years “both inhibited growth and rapidly advanced maturation of the epiphyseal growth plates, bringing about permanent attenuation in size after a relatively short period of treatment” 2. Ashley’s prospective height was reduced about 13 inches to 4 feet 5 inches. Ashley’s parents argue that “this makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc.”3. However, besides the high-dose estrogen treatment, physicians removed Ashley’s uterus, to prevent potential discomfort from menstrual cramps and pregnancy in the event of rape, and removed her breast buds because of a family history of cancer and fibrocystic disease. Ashley also had an appendectomy for preventative reasons4. This treatment has now been named the “Ashley Treatment.”

The debate surrounding this treatment contrasts those who argue that the Ashley Treatment is for “creating a 21st century Frankenstein and for maiming a child for the sake of convenience” versus those who argue that this treatment is not only in the best interest of the child because it will provide a better quality of life but is also in the best interest of the parents and society as a whole1. Those advocating for the rights of the disabled see this treatment as potentially leading to the violation of human rights for the disabled. What can at first glance appear beneficial can in the long-run lead to harmful results. Disability-rights advocates argue that Ashley was not suffering and that the treatment was untested4. In an editorial regarding the Ashley Treatment in Archives of Pediatric & Adolescent Medicine, the authors question whether the Ashley Treatment is a “simple technical fix”5. Determining whether this treatment is in the best interest of the child is both a medical and ethical issue because substantive questions have arisen about this procedure. Are there uses of medical technology that are inconsistent with respect for the human person? If the Ashley Treatment becomes widely accepted, could this lead to the use of more controversial procedures that might reduce the size or reproductive capacity of other vulnerable people? If this treatment becomes a part of standard medical practice, could it affect insurance coverage and rates?6 These questions are important because other families are contemplating the same procedure for their children.

Ethical Analysis

The issue of the Ashley Treatment has raised serious interdisciplinary concerns. There has been a call for a public debate on this issue that would examine all aspects of this treatment including the medical and ethical implications. Since the revelation of the Ashley Treatment, the public debate has ranged from support of her parents to accusations that this is a form of eugenics and even a violation of the basic human rights of the disabled. To determine if the Ashley Treatment is ethical, the principles of respect for persons, beneficence, nonmaleficence and justice will be applied to this treatment and its consequences.

Respect for Persons

This principle incorporates two ethical convictions: first, that persons should be treated as autonomous agents; and second, that persons with diminished autonomy are entitled to protection. The principle of respect for persons thus is divided into two separate moral requirements: the requirement to acknowledge autonomy and the requirement to protect those with diminished autonomy34. Respect for human persons refers to the right of a person to exercise self-determination and to be treated with dignity and respect. All people deserve autonomy and to be treated with dignity and respect. Failure to provide any person with adequate health care, regardless of their race, creed, color, national origin, sexual orientation, disability, etc., violates this basic right of respect for persons. Proponents of the Ashley Treatment, and in particular Ashley’s parents, argue that this treatment is in Ashley’s best interest because it will allow her to have a better quality of life and will assist them as caregivers in being able to give her the best possible care. Ashley is completely dependent on her parents for all aspects of her care which includes physical challenges such as lifting, turning, bathing, prevention of skin breakdown, exercises to preserve joint mobility, etc. Reducing Ashley’s size and weight not only reduces the demands and stress on the caregivers but also allows this child to be given the best possible care35. Ethicist Joel Frader argues that “our society generally provides insufficient support for persons with disabilities and those who devote time, effort, and resources to caring for the patient. A more generous society would make sure caregivers have assistance devices and other help necessary so that the physical, social, and emotional work of providing care does not become overwhelming”35. Since society does not always fulfill its duty in this area, the Ashley Treatment will assist both the disabled person and the enemy. The parents also argue that having Ashley be a size that is more appropriate to her developmental level makes her less of an anomaly to society and might assure her of the basic dignity and respect all persons deserve.

Opponents argue that forcing Ashley to be a permanent child, or what some refer to as “terminal infantilizing,” denies her the basic dignity and respect she deserves as a person. Does Ashley have the right to develop naturally? Do all people have the right to develop naturally? Bioethicist Arthur Caplan argues that “we should put greater focus on providing appropriately sized wheelchairs, and bathtubs and home-health assistance rather than on pharmacological remedies. This solution allows Ashley to be cared for without interfering with her natural developmental patterns. This reflects a moral tradition that dates back to Aristotle. It suggests that looking after Ashley’s best interest might involve more than just making her as comfortable as possible. We must also allow her to develop naturally”6. Some may argue that this decision is a personal decision that Ashley’s parents are making based on their right of autonomy that focuses on what is in the best interest of their child. Therefore, this is a private matter between the parents and the physicians at Seattle Children’s Hospital. This is true but it could also have far reaching public consequences. Those who are advocates for the rights of the disabled fear the slippery slope. Could this technology be used on other children with similar conditions—cerebral palsy, spina bifida and those with other serious brain injuries? Could we use other procedures to reduce the size and reproductive capacity of severely demented adult patients at risk of receiving sub-standard care because of his or her size or vulnerability6? Can medical technology have benefits but in the long-run diminish a person’s basic dignity and respect?

The removal of Ashley’s uterus raises real ethical concerns about sterilization. Directly sterilizing Ashley by removing her uterus because she does not need it can have wide-ranging consequences. The United States has a history of not always protecting the rights of the most vulnerable. “The eugenics movement of the first half of the 20th century, although now routinely castigated, was at the time championed by mainstream scholars and societal leaders across the political spectrum. Well-meaning eugenic advocates hoped to eliminate pain from disease and inequity in US society by allowing ‘defective’ infants to die, encouraging certain couples to marry, and discouraging others from parenthood. Because they believed that persons with mental retardation could not be trusted to understand the wisdom of eugenics, many states passed laws that led to the involuntary sterilization of adults with mental retardation. Upheld by the U. S. Supreme Court in their 1927 Buck v. Bell decision, such laws resulted in more than 60,000 individuals being sterilized. Although eugenics was viewed with mounting disdain after World War II, sterilizations of persons with mental retardation continued in the United States through the 1960s, and it was still routine practice in the 1970s to allow a child with Down syndrome to die of lack of surgical correction of duodenal atresia”5. We have mistreated vulnerable patients in the past—minorities, disabled persons, children, prisoners, etc. The most vulnerable have been denied their basic human rights by forced sterilizations, medical experimentation, and other eugenic experiments, etc. Those who advocate for the disabled believe we need a public debate on the Ashley Treatment because if safeguards are not put in place now, the consequences could be devastating for many vulnerable people both young and old in the future. Proponents for the Ashley Treatment argue that the slippery slope argument is a “red herring” because in the vast majority of cases, we have not descended down the feared slippery slope into moral degradation. When practices deviate too far from the norm, the public, when informed, will speak out6. This may be true, but until we have an open, honest and comprehensive debate on whether attempts to attenuate growth run with or against our fundamental values in caring for children with profound developmental disabilities, any further requests for this treatment should be denied. To treat the disabled with dignity and respect means society needs to provide the necessary resources to assist disabled children and their families. What has to be determined is whether the Ashley Treatment is just “a pharmacological solution for a social failure”36. If it is then this treatment violates the principle of respect for persons.

A basic tenet of the principle of respect for persons is that one may never be used as a means to an end or in a manner inconsistent with the person’s interests or wishes. It appears that there are still too many unknowns about this experimental treatment. Bioethicist Arthur Caplan argues that Ashley’s case “should be considered research, and be subject to the same ethical scrutiny as any other scientific study. But partly because no new drugs or procedures are being tested, the Seattle doctors have been afforded more latitude than they should have been”37. Proponents argue that Ashley’s breasts and uterus are not necessary organs because she will never utilize them. Because a person is unaware and will remain unaware does this mean they lose their inalienable rights? Opponents of this treatment argue that it was done to benefit the caregivers more than Ashley. Even if Ashley were larger there are other, less invasive and safer ways that would allow her mobility and family engagement. There are potential adverse effects with the high-dose estrogen treatments. “While there are data that high-dose estrogen treatment will make extremely tall-for-age (but otherwise normal) girls shorter as adults, this effect may be different in the population of children with severe disabilities. More needs to be known”5. In addition, the surgical procedures were non-therapeutic, and also have serious side-effects. Ashley’s uterus was removed to avoid the possibility of uterine and cervical cancer. Ashley’s appendix was removed for preventative measures. Could arguments be made to remove other additional organs to prevent future diseases? Where will we draw the line? To consent to this treatment with all the unknowns when Ashley is not suffering and the treatment is untested could be viewed as using her as a means to an end. The Ashley Treatment could also be looked upon as a medical experiment. Medical advances are necessary for society, and experimental surgeries and treatments are important tools to bring about these advances. But these advances can never be at the expense of denying individuals their basic dignity and respect.

Beneficience

Beneficence involves the obligation to prevent and remove harm and to promote the good of the person by minimizing the possible harms or risks and maximizing the potential benefits. Beneficence includes nonmaleficence, which prohibits the infliction of harm, injury, or death upon others. In medical ethics this principle has been closely associated with the maxim Primum non nocere: “Above all do no harm.” Proponents argue that the Ashley Treatment is in her best interest for a number of reasons. First, being a smaller child it will be easier for her caregivers to lift her and care for her general hygiene, which should reduce the risk of bedsores, pneumonia and bladder infection that plague patients like Ashley. Second, the removal of the uterus will eliminate any possibility of Ashley being traumatized by menstruation, will prevent pregnancy and prevent cervical cancer. Third, her breast buds were removed to avoid the discomfort of large breasts which are common in Ashley’s family and to prevent breast cancer. Fourth, the appendix was removed to prevent an appendicitis which occurs in 7% of the population and which would be difficult to diagnose in Ashley because she is unable to communicate the symptoms. Lastly, Ashley’s parents believe that without developing secondary sexual characteristics, their daughter will be less vulnerable to sexual abuse3. In the eyes of Ashley’s parents all of these procedures are increasing Ashley’s quality of life and therefore are in her best interest. Opponents argue that the treatment and surgery are nonbeneficial because Ashley is not suffering, the treatment is untested and has potential adverse effects, and the surgery is unnecessary because there are viable options. Physicians are ethically bound to do no harm to a patient. Ashley had a surgical procedure that involves pain and risks and was nontherapeutic. The risks of high-dose estrogen therapy include blood clots, deep vein thrombosis and it affects lipid metabolism. Finally, opponents argue that this treatment is setting a dangerous precedent for society as a whole, especially for the disabled. If the principle of beneficence promotes the good of the person by minimizing possible harms and maximizing possible benefits, then we must examine other viable options. First, there are appropriate resources that would allow a larger person to maintain mobility and family engagement. Caplan argues that “appropriately sized wheelchairs, and bathtubs and home-health assistance” can provide a good quality of life without pharmacological remedies6. Second, removing Ashley’s uterus “may cause her ovaries not to function normally as a result of a compromised supply of blood. This may result in Ashley’s ovaries not producing enough of the hormones that would otherwise protect her against serious common diseases such as heart disease and osteoporosis”26. Regarding menstruation, it would seem to be less traumatizing for Ashley and more reasonable to see if menstruation represented either a psychological or hygienic difficulty for her. If it did present problems then the physicians could respond medically to minimize the frequency and amount of bleeding, give pain killers for cramps or decide on a hysterectomy after puberty35. Third, Ashley’s risk of becoming pregnant is small, even if she is placed in an institution. It also appears that her risk of cervical cancer and even breast cancer are small. The risks resulting from the surgery and the high-dose estrogen treatments seem to outweigh the benefits. Fourth, the rationale for the appendix removal is that there is a 7% chance of appendicitis. This procedure may be preventative but the benefits seem minimal. Besides, could this not open the slippery slope to other procedures? Why not perform a tonsillectomy or a fundoplication or some other simple surgery that would also be preventative. What criteria do we use for determining if the surgery is beneficial? Finally, there is the potential for future abuses with other disabled or demented individuals. Ashley’s case may be extreme but it does set a medical precedent that could open up the slippery slope. Proponents for the treatment argue that every treatment has the possibility of abuse and if this is taken seriously we would stifle the practice of medicine and medical research. This is true but the track record in the United States for mistreatment of the most vulnerable in society is not good. What might stop parents petitioning an ethics committee to use growth attenuation therapy on a child with Down syndrome, or severe spina bifida? What might stop parents from requesting sterilization of their cognitively impaired child because it is in her best interests? Ashley’s treatment is being justified because she is profoundly developmentally delayed and is unlikely ever to go beyond the capacity of an infant mentality. The problem is that there are others who fit this category. Is this the future treatment of choice? Ashley’s case is centered on management options but it is not a stretch to imagine the debate moving to whether her quality of life is even worth preserving. All one has to do is look to the Netherlands and their Groningen Protocol to see in what direction some are moving in regards to the most vulnerable in society38.

No one will dispute that balancing benefits and burdens is difficult. Some will say that the benefits clearly out weigh the burdens with the Ashley Treatment. However, after reviewing the facts concerning the state of our knowledge regarding the treatment, the risks and potential adverse effects and the possible viable options available, it is clear that the Ashley Treatment does not minimize the risks incurred by this patient, but exposes her to unnecessary risks that have the potential for injury, harm, and even death. This is an experimental, non-lifesaving treatment with serious and even deadly unknowns. Arguably, this treatment not only fails the test of beneficence, but also fails the test of nonmaleficence.

Justice

Finally, justice recognizes that each person should be treated fairly and equitably, and be given his or her due. The principle of justice can be applied to this situation in three ways. First, questions of justice have been raised about whether Ashley and others with similar medical conditions who are severely cognitively impaired might be classified as vulnerable individuals and whether this type of experimental treatment is a form of exploitation. There is no doubt that Ashley and others with her condition are vulnerable individuals. They are incompetent and are at the mercy of their surrogate decision makers. Even though many argue that the treatment and surgery is in the best interest of Ashley, because her quality of life will be better in numerous ways, others will argue that in reality it is primarily in the best interest of the caregivers. There are viable options regarding treatment and care that will allow Ashley to be cared for without interfering with her natural developmental patterns. To perform this treatment and surgery on Ashley that is experimental and has potential risks and burdens when there are other viable options available that are less harmful can be viewed as a form of exploitation. It is unjust to place vulnerable individuals like Ashley in this position when other less invasive options give these individuals a comparable quality of life.

Second, on May 8, 2007, the Washington Protection and Advocacy System (WPAS), a private group vested with federal investigative authority for people with disabilities, released a report describing in detail how the request for Ashley’s intervention was evaluated.39 “The ethics committee had recommended that the family obtain a court review for the hysterectomy. The parents presented a letter from their lawyer arguing that, as a legal matter and according to case law in Washington, a court order was not necessary. The letter was accepted by the hospital, and the surgery proceeded.”40 The WPAS found that Seattle Children’s Hospital and Regional Medical Center violated the constitutional and common law rights of Ashley by performing a hysterectomy without a court order from the state. The law in Washington specifically prohibits the direct sterilization of minors with developmental disabilities without advocacy on their behalf and court approval. This violated Ashley’s right to be treated fairly and equitably. The hospital did agree to obtain a court order prior to any other medical interventions to attenuate growth in children with developmental disabilities.40

Third, the issue of justice pertains to the Ashley Treatment specifically in regards to distributive justice, which concerns the fair and equitable allocation of medical resources. The main issue here is research priorities. Should funds be used to support this experimental treatment when the risks seem unreasonable and possibly harmful? The amount of money spent on these surgeries and treatment could certainly be invested in new ways to help severely disabled children and their families live a better quality of life. This would help to minimize the risks and maximize the benefits, not only for the disabled person, but also for families and society as a whole. Also, if the Ashley Treatment becomes a part of standard medical practice, it could affect insurance coverage and rates. Since all Americans have an interest in access to affordable insurance, we should be very concerned about the relative value of this treatment as a matter of distributive justice. If this treatment is designed to prevent out-of-home placement, then one might think a cost-benefit analysis should be initiated to determine whether medication and surgery or more funds for home-based services would be more equitable and just5. In general, pharmacological remedies do not usually trump adequate social support. As a matter of social justice, “when the parents’ resources are limited, the state, with its greater resources, should not resort to biological modification, when the patient’s quality of life can be preserved through social services”26. Who should receive medical resources and whether the Ashley Treatment is a fair and equitable allocation of medical resources is an important ethical issue. Medical professionals have an ethical obligation to use available resources fairly and to distribute them fairly and equitably. Failure to do so violates the principle of justice.

Endnotes:

1. Laurence J. and Jack L. Parents who froze girl in time defend their actions. The Independent [serial on the Internet]. 2007 Jan 5: [about 2 p.] Available from: http://news.independent.co.uk/world/americas/article2125403.ece

2. Gunther DF, Diekema DS. Attenuating growth in children with profound developmental disability: a new approach to an old dilemma. Arch Pediatr Adolesc Med 2006 Oct 10; 160(10):1013-7.

3. The “Ashley Treatment”: towards a better quality of life for all “Pillow Angels”. [homepage on the Internet]. 2007 Mar 25. [about 94 screens]. Available from: http://ashleytreatment.spaces.live.com/

4. Gibbs N. Pillow angel ethics. Time 2007 Jan 22: 56-57.

5. Brosco J, Feudtner C. Growth attenuation: A diminutive solution to a daunting problem. Arch Pediatr Adolesc Med. 2006 Oct 10;160(10):1077-8.

6. Dienhart J. & Glezen P. On Ethics: Ashley’s treatment: Whose business? Whose ethics? The Seattle Post Intelligencer [serial on the Internet]. 2007: [about 3 p.]. Available from: http://seattlepi.nwsource.com/opinion/299518_ethics14.html

26. Liao SM, Savulescu, Sheehan M. The Ashley Treatment: best interests, convenience and parental decision-making. Hasting Center Report. 2007 March-April 37,2:16-20.

34. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research, U. S. Government Printing Office, Washington, D.C., 1979: B-1.

35. Mims C. The Pillow angel case: Three bioethicists weigh in. Scientific American [serial on the Internet]. 2007 Jan 5: [about 8 pages]. Available from: http://www.sciam.com/article.cfm?articleID=F41E496C-E7F2-99DF-33E40A7C8187563C&sc=I100322

36. Wikipedia contributors. Ashley treatment. Wikipedia, the Free Encyclopedia [database on the Internet] [cited 2007 Jan 21]. [about 2 pages]. Available from:http://en.wikipedia.org/wiki/Ashley_Treatment

37. Schwartman B. Expert considers some ethical guidelines for conducting research. The Jewish Exponent [serial on the Internet]. 2005 Jan 5:5. Available from:http://www.jewishexponent.com

38. Verhagen E, Sauer P. The Groningen protocol. N Engl J Med. 2005 Mar 10:961:960-2.

39.Carlson D.R. & Dorfman, D.A. Investigative report regarding the “Ashley Treatment,” (Seattle, Wash.: Washington Protection and Advocacy System, 2007).

40. Wilfond, B. The Ashley Case: the public response and policy implications. Hastings Center Report 2007 September-October : 37: 12-13.

 

Competence and Informed Consent

Could a competent, adult patient make the wrong decision?  This is not an uncommon issue encountered in the hospital setting. First of all, there is a need to clarify what we mean by a wrong decision. Decisions have to be made at certain points in the course of managing a patient’s condition. Quite often the medical staff has at its disposal several possibilities. So the competent patient is presented with the various options and asked to choose which among them he or she would prefer. The common understanding of the phrase “a patient making the wrong decision” is when the option chosen by the patient is not the one the medical personnel would have picked themselves. Taken to the extreme, a competent, adult patient refusing treatment or any medical intervention whatsoever would very well be interpreted as a wrong decision. This brings us to the question posed at the beginning of this essay. First, I will define competence. Second, I will discuss its significance in relation to obtaining an informed consent. And third, I will address the question above.

The simplest definition of competence is “the ability to perform a task.”[1] From this definition it is important to note that an individual’s competence is directly correlated with the specific task at hand. And in the medical setting this usually pertains to a patient’s competence to make decisions regarding his or her treatment. It is necessary to point out that strictly speaking, it is the court system that evaluates competence/incompetence while the health care professionals determine capacity/incapacity for decision-making. However, these two terms end up being used interchangeably since “this distinction breaks down in practice.”[2]

The determination of an adult patient’s competence is essential in the process of obtaining an informed consent because decisions made by patients who have been declared incompetent are considered invalid while those made by competent individuals would be acceptable. The concept of informed consent relates to two important aspects. The first is that it meets the requirement of getting consent from patients prior to any medical procedure be it diagnostic, therapeutic, or research. And secondly and more relevant to this discussion is that an informed consent represents a person’s “autonomous authorization of a medical intervention or of participation in research.”[3] Clearly competence and the bioethical principle of autonomy are linked inseparably. Competence is a necessary requirement for a person to exercise his or her autonomy.

What then are the criteria that need to be met in order for an adult patient to be declared competent?

(1) The patient should be oriented to time, place, and person. It is possible that a patient could be oriented at certain times and disoriented at other times. Thus it is necessary to continuously track the waxing and waning of the patient on the chart since this could be a crucial element if ever something wrong happens and the case ends up in court.

(2) The patient should understand relevant information. Does the patient understand the basics of the procedure that is being suggested? We have to acknowledge the fact that an average patient would be hard pressed to grasp the medical and technical details of the procedure especially when the medical staff tends to use highly scientific terms when talking with the patient. But a general understanding of the procedure should be acceptable.

(3) The risks and benefits of the various options should be clear to the patient.

(4) The consequences of all options – including the refusal of any treatment – should be clearly understood by the patient as well.

(5) The patient should be able to clearly and voluntarily express (verbally or otherwise) his or her preference. Any sign of coercion or involuntariness would be a red flag.

An adult patient’s competence then enables him or her to give a valid informed consent. As an autonomous individual and having been presented with the various options and their respective risks and benefits, the competent patient is then requested to make a choice. It is the obligation of the medical staff to respect the patient’s autonomy by respecting whatever decision he or she makes.

Now we are back to the question: Could a competent, adult patient make a wrong decision? It is a fact that sometimes medical personnel get so frustrated when a patient makes a choice that is not to their liking. Some have resorted to requesting a psychiatric consult. If they truly have some sound basis for doubting the competence of the patient and just want a confirmation from a psychiatrist, then this seems to be acceptable. They should be reminded that they could also ask their colleagues for a second opinion on this matter. However, if the motive behind the psychiatric consult is to find a way to declare the patient incompetent so they could then convince the relatives, or whoever the surrogate decision-maker would be, to choose their preferred option then this action is not only unacceptable but smacks of paternalism. And in so doing, the patient’s autonomy is not being upheld. If the medical personnel could not in good conscience carry out the choice of the patient, they still have another option – that of passing on the care of the patient to another health care professional. A physician can never abandon the patient so he or she is still responsible for the patient’s care until another physician has accepted this transfer or the patient has decided to leave AMA or against medical advice.

Being human means being imperfect. We make mistakes every now and then. So long as an adult patient has been declared competent then she is merely exercising her autonomy every time she makes an informed decision.

[1] Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, Sixth edition (New York: Oxford University Press, 2009) 112.

[2] Beauchamp and Childress 111.

[3] Beauchamp and Childress 119.

Hippocratic Oath & Autonomy

John is a healthy 45-year-old executive who has an appointment with his family doctor for a routine check-up. He read in the newspaper about a new expensive X-Ray test to detect heart disease called CT angiography. John was not concerned that the test was extremely expensive because he thought his insurance would cover it. He told his doctor he wanted to have the test done. The doctor refused his request. He explained that there is no clinical evidence that the test is of value to patients, like John, who have no symptoms or risk factors of heart disease. In addition, a CT angiogram would expose him to unnecessary radiation. John accepted his doctor’s argument, but he still wanted the test to put his mind at ease. Don’t physicians have a moral obligation to respect patient preferences? Isn’t that what the Hippocratic Oath is all about?

The 2500-year-old Hippocratic Oath has stood the test of time. It is still the most popular pledge made by medical students at the time of their graduation. In part, it states, “I will use treatment to help the sick according to my ability and judgment, but I will never use it to injure or wrong them”. The oath obliges the physician, based on his ability and judgment, to benefit the patient. This is the principle of beneficence. The Oath also places on the physician the obligation not to harm the patient (“primum no nocere”). This is the principle of non-maleficence. In this case, the physician exercises the principle of beneficence by refusing to order a test, which, in his judgment, is not needed. In addition, he exercises the principle of non-malfeasance because, in his judgment, the test may be harmful to the patient. It would expose him to unnecessary radiation.

Notice that the Hippocratic Oath is subjective. It is based strictly on the physician’s judgment even if his colleagues do not agree. Also, notice that it is based on the physician’s judgment, not the patient’s. The Oath implies that the physician has the experience and expertise to make decisions on behalf of the patient even if his judgment is in conflict with the patient’s wishes, as it is in this case. Thus, the Hippocratic Oath does not support John’s argument that the physician has a moral obligation to order a CT angiogram.

Serious challenges to the Hippocratic Oath began in the 1970s. First, one may challenge the way benefits to the patient are assessed. If CT angiograms were considered the standard of care for all patients regardless of symptoms or risk factors, the physician would be hard pressed to refuse the patient’s request for the test. The objective judgment of the profession would trump the subjective judgment of one physician. However, that is not the case here. At this time (July 2008) there is no objective evidence to support the benefit of this test in John’s case.

Another challenge to the Hippocratic Oath came for the American Medical Association. Although its previous codes were essentially Hippocratic, the AMA changed its code in a dramatic and significant way in 1980. The new version is the first to speak of patient rights. “The physician shall respect the rights of patients, of colleagues and of other health professionals, and shall safeguard patients’ confidences within the constraints of the law”. The 1980 AMA code breaks with the Hippocratic tradition, which does not mention anyone’s rights. From this time onward, the principle of respect for patient autonomy has been on the ascendency.

“Whether respect for the autonomy of patients should have priority over professional beneficence directed at those patients is a central problem in biomedical ethics” (Beauchamp & Childress, Principles of Biomedical Ethics, 2009). In this case John expresses his autonomy right by requesting that his doctor order the expensive test if only to put his mind at ease. The doctor, in turn, applies the principle of beneficence by denying the request because in his professional judgment the test is not indicated in John’s case. Moreover, he applies the principle of non-maleficence by refusing to subject his patient to the danger of unnecessary radiation. How can this conflict be resolved?

The answer to this conflict lies in the principle of distributive justice. Health care spending in the United States is spiraling out of control. New technologies are a major driving force for this increase. The principle of distributive justice refers to an appropriate, equitable, and fair distribution of health care resources. It is not appropriate for a doctor to order unnecessary tests that subject patients to danger. It is not equitable for one person to receive expensive diagnostic testing, merely for peace of mind, while 50 million uninsured Americans cannot afford the costs of basic health care. In addition, it is not fair to burden society with unnecessary costs.

Daniel Callahan, an expert on bioethics, argues that solving the current crisis in our health care system – rapidly rising costs and dwindling access – requires replacing the current “ethic of individual rights” with an “ethic of the common good”. In a similar vein Newsweek columnist, Robert J. Samuelson wrote: “We face a choice between a society where people accept modest sacrifices for a common good or a more contentious society where groups selfishly protect their own benefits.”

Artificial Hydration and Nutrition

Question: My mother is 92-years-old and has lung cancer that has metastasized to her liver and brain. She has been declared incompetent and terminal by her physicians. She has stopped eating and her physicians have asked the family to consider inserting a feeding tube in her to give her nourishment. Are we required to insert a feeding tube?

Answer:

Traditional moralists made a clear distinction between allowing-to-die, which entails foregoing disproportionate means where death is foreseen but not directly intended and direct killing by euthanasia. Allowing a patient to die by foregoing aggressive, non-beneficial treatments is not only morally permissible, but it is treating the patient with dignity and respect. The decision is based on the fact that physiological existence no longer offers these patients any hope at all of pursuing those goods for which human life is the fundamental condition. I would conclude that if the family believes that the feeding tube is burdensome and does not offer a reasonable hope of benefit for their mother, then the feeding tube would not need to be inserted. One option would be to place their mother in hospice or move toward palliative care only.

This position is supported by the tradition of the Catholic Church. The history of the Catholic Church’s position on the ordinary-extraordinary means distinction dates back to the 16th century Dominican moralists. The Dominican moralists, followed the tradition of the Church that states human life is a good but not an absolute good. As a relative good, one’s duty to preserve it is a limited duty. While a person has freedom over his or her life, one is never permitted to directly take one’s life. The issue becomes to what extent is one obligated to preserve one’s life. The traditional understanding of ordinary-extraordinary means remained basically unchallenged until the mid-1900s with the advent of advances in medicine and technology. How to apply the early distinction of ordinary-extraordinary means to issues like oxygen and feeding tubes, especially with permanently unconscious patients became hotly debated as early as the 1950s. Jesuit moralist Gerald Kelly was one of the first to examine this issue critically. He defined ordinary means of preserving life as “all medicines, treatments, and operations, which offer a reasonable hope of benefit for the patient and which can be obtained and used without excessive expense, pain, or other inconvenience.” Extraordinary means would be “all medicines, treatments, and operations, which cannot be obtained or used without excessive expense, pain, or other inconvenience, or which, if used, would not offer a reasonable hope of benefit” (Kelly, Medico-Moral Problems, 1957). The distinctive element of Kelly’s interpretation is that it is a patient-centered, quality-of-life approach which is consistent with how the 16th-century-Dominican moralists viewed this distinction. Kelly concludes that no person is morally obligated to use any means, and this would include natural or artificial means, that does not offer a reasonable hope of ameliorating the patient’s condition.

A contemporary understanding of the ordinary-extraordinary means distinction was given in the 1980 Congregation for the Doctrine of the Faiths’ Declaration on Euthanasia. The Declaration follows the tradition on the ordinary-extraordinary means distinction since the 16th century, which is based on the effect of the treatment on the patient or those responsible for the care of the patient. The Declaration reminds us of the duty one has to care for one’s own life and to seek such care for others. But there are limits to this obligation. One needs to judge the means used by “studying the type of treatment to be used, its degree of complexity or risk, its cost and the possibilities of using it, and comparing these elements with the result that can be expected, taking into account the state of the sick person and his or her physical and moral resources” (Congregation for the Doctrine of the Faith, “Declaration on Euthanasia,” 1980). The Declaration goes on to give four examples: patients are permitted to use experimental, advanced medical techniques, which may be a service to humanity; patients may interrupt treatments if they fall short of expectations; the refusal of a technique that is in use and carries a risk or is burdensome is not equivalent to suicide; finally, when death is imminent in spite of the means used, it is permitted in conscience to make the decision to refuse forms of treatment that would only secure a precarious and burdensome prolongation of life, so long as the normal care due to the sick person in similar cases is not interrupted (Congregation for the Doctrine of the Faith, 1980). Finally, the Congregation for the Doctrine of the Faith reflects the traditional teaching when it writes: “Life is a gift from God, and on the other hand death is unavoidable; it is necessary, therefore, that we, without in any way hastening the hour of death, should be able to accept it with full responsibility and dignity” (Congregation for the Doctrine of the Faith, 1980). The only real change is that the document realizes that the terms ordinary and extraordinary are imprecise as terms in regards to the rapid advancement of medicine and technology. More precise terms would be proportionate and disproportionate (Congregation for the Doctrine of the Faith, 1980).

The U. S. Conference of Catholic Bishop’s fourth edition of the Ethical and Religious Directives for Catholic Health Care Services (ERDs) provide authoritative ethical guidance for all those working in Catholic Health Care facilities. The introduction to Part 6 states the more restrictive standard: “These statements agree that hydration and nutrition are not morally obligatory either when they bring no comfort to a person who is imminently dying or when they cannot be assimilated by the person’s body” (United States Catholic Conference of Bishops, Introduction-Part 6, 2001). Directive 58 states clearly that, “There should be a presumption in favor of providing nutrition and hydration to all patients, including patients who require medically assisted nutrition and hydration, as long as this is of sufficient benefit to outweigh the burdens involved to the patient” (United States Catholic Conference of Bishops, 2001). This directive follows the traditional understanding of the ordinary-extraordinary means distinction, in which the benefits-burdens are understood broadly relative to the patient.