1.Consent and refusal
11. The use of ethics consultation regarding consent and refusal
Susan K. Palmer
A 63-year-old female unconscious patient involved in an MVA was brought urgently to the O.R for repair of bilateral femur fractures. The anesthesiologist administered a general endotracheal anesthetic for a 6-hour operation during which the patient received six units of packed red cells and other blood products. She was transferred to the intensive care unit (ICU) still intubated and ventilated. The following day the anesthesiologist visited the patient, who was now awake but still dependent on mechanical ventilation. She signaled that she wanted to write something given a pad and pencil. She wrote, “I am Christian Scientist, I want to go home NOW.”
Mary Baker Eddy founded Christian Science in about 1866. Her textbook entitled Science and Health with Key to the Scriptures became the primary source for the Christian Science philosophy, which has unique beliefs concerning illness and healing. There are approximately 500 000 members of this group, found mostly in the US.
A foundational belief of the Christian Science church is that illness is an illusion and that an ill person can simply change their perception to alter or eliminate their illusory illness. All drugs, surgery, or other conventional medical treatments are unneeded and ultimately ineffective. Prayer is the only effective way to change the course of illness, by revealing the noncorporeal nature of all existence, including the nonphysical nature of the human body. A body that is spiritual is not in need of physical treatment.
Christian Science theology describes the corporeal world as a kind of shared illusion. In this sense, Christian Science bears a resemblance to the fundamental Buddhist idea that the world of the senses is illusory. Christian Scientists believe that immortality is actually and only achievable by the perfection of the spiritual mind. Disease is an imperfection of the spirit perceived as a physical problem.
Religious freedom and state interests
In the US there is a complex history of the relationship of the state to religious groups. Even though the framers of the Constitution were adamant that there should be a separation of church and state, such that the state could make no laws favoring any church, there have been times when religious groups were given special privileges or permission to indulge in what would otherwise be illegal conduct. Recently, religious groups and their followers are more commonly being held to the same standards as other members of society with their religious standing or preferences not allowed to excuse harmful conduct just because it conforms with religious preferences. For example, the tradition of churches providing “sanctuary” for people wanted by the civil authorities was abolished with the ecclesiastical courts in sixteenth-century England. But the idea that churches can still provide protection from civil prosecution for their own clergy and some church members lingers. Recent revelations that many Roman Catholic Churches in America and Europe failed to report the repeated criminal activities of its clergy are potent evidence that some churches still do not wholly submit to the authority of the state.
The Christian Scientist church and the state
Among the many aspects of her Christian Science philosophy, Mary Eddy was explicit in her direction that believers should be obedient to the authority of the law and of states, including state health laws. She was a progressive regarding the treatment of women and children, and was also a believer in civil liberties and individual freedom.
However, the American tradition of “freedom of religious belief” is not identical with a right to freely practice religious behavior that may be harmful to others or to society. At times, Christian Scientists have come to public attention because a member or members have denied standard healthcare for their children. Rejection of vaccination for Christian Scientist children may lead not only to the suffering and complications of common childhood diseases for the unvaccinated children, but may also lead to the propagation of diseases like measles within the whole population, thus harming others. The state, however, has an enduring interest in the health of its children and its general population.
The majority of the US still has specific legislation that protects parents from charges of child abuse or neglect when they deny their children certain resources, including some medical care, for religious reasons. The 1972 case Yoder v. Wisconsin allowed Amish to be exempt from the duty to educate or to send their children to school.1 The decision was justified on the basis that it was necessary for preservation of the Amish way of life. There are numerous examples of religion-based exceptions to public health requirements such as rules that children be vaccinated to attend public school.
However, there are no legislative protections for religious citizens accused of more serious crimes and felonious harms. In August, 1990 the New York Times reported on several cases of parents charged with felonies after deaths of their children occurred as a direct result of the parents’ failure to seek medical care for them.2 Although the majority of such cases resulted only in civil penalties such as fines or sentences requiring public service and promises to seek medical care for their remaining children, there are now some cases in which parents have been sentenced to prison time. A more recent example occurred in 2008 in Wisconsin wherein parents allowed their 11-year-old daughter to die of diabetes.3 The child deteriorated while her parents and other couples treated her only with prayer. The father and mother were accused of reckless homicide and were sentenced to some prison time every year for 6 years and probation for 10 years.
In our case, the patient is an adult who appears to be decisionally competent and the complexities of dealing with minor or incompetent patients are (fortunately) not involved.
How should the anesthesiologist respond to this patient?
After reassuring the patient, the anesthesiologist decided to consult with several colleagues and hospital officials, with the following results:
(1) The attending orthopedic surgeon was called and suggested that his patient be sedated indefinitely so that she does not harm herself or disturb the surgical repairs.
(2) The Chief of Staff (COS), who was also a surgeon, agreed with the attending surgeon.
(3) The hospital Chief Executive Officer (CEO) decided to call the hospital system lawyers.
(4) Anesthesiology colleagues at the state university suggested calling the chair of their hospital ethics committee, and provided a name and phone number.
(5) An attempt was made to contact local elders/readers from the Church of Christ, Scientist, but there was no phone registered to the local church.
Can the advice of the orthopedic surgeon or the COS be justified by reference to ethical principles or ethical reasoning? Neither the orthopedic surgeon nor the COS suggested that their advice to chemically restrain the patient could be justified on any but practical grounds. Federal laws regarding physical and chemical restraint now require that the use of any restraint must be re-evaluated frequently. The patient was cooperative, so chemical restraint beyond appropriate analgesia was not needed.
The hospital CEO was advised by the hospital system lawyers that legally it would be safest to follow the patient’s requests if she was considered to have medical decisional capacity. The lawyers were perplexed as to whether the patient had the ability to command the removal of her own ventilatory support if the physicians thought that death would ensue shortly.
When the anesthesiologist returned to the patient’s bedside, she was conscious but dependent on ventilatory support. The anesthesiologist assured the patient that her requests were being seriously considered. He also indicated that her statement was tantamount to requesting euthanasia because she predictably would not survive extubation or cessation of intravenous support at that time. He explained that, when she was delivered to the hospital, treatment was started in the good faith assumption that she would want to survive her injuries. He told her that he could not in good conscience stop her medical support at this time, and certainly her metallic femoral implants could not be removed to satisfy her now stated wish not to receive medical care. He indicated to the patient that he was actively seeking advice about her situation and requests.
Advice from the Ethics Committee chair
During telephone consultation with the university Ethics Committee chair, she suggested a formal ethics consultation involving an in-person evaluation of the patient’s situation by a member of the university’s clinical ethics consultation team, who would travel to his hospital. Alternatively, the university clinical ethics consultation team could participate in a consultation by conferencing telephone. Finally, the Ethics Committee chair encouraged the anesthesiologist to lead an informal ethical consultation about the patient’s situation.
A local ethics consultation process was initiated, with the invitation of all interested parties including the surgeon, the anesthesiologist, the hospital CEO, the patient and her choice of supportive relatives or advocates, and a representative from the patient’s nurses. The patient’s consent for the consultation was obtained and all the participants agreed that the consultation would be treated with the same respect and confidentiality afforded the rest of the patient’s medical care. With the guidance of the university Ethics Committee chair, the anesthesiologist planned the consultation according to the following outline:
(1) What is the current medical situation?
(2) What are the legal considerations?
(3) What are the medical ethical considerations?
(4) What is included in the range of acceptable/justifiable ethical and professional responses
What is the current medical situation?
All medical ethical consultations begin with explication of the patient’s current medical condition and the range of recovery or therapeutic responses expected.
The patient’s attending physician explained what the normal course of planned treatments would be. This patient was stable and expected to recover back to her baseline ambulatory condition. She had significant risks for continuing pain and for serious sequelae from her long bones fractures. Her ventilatory insufficiency had not been definitively diagnosed. The differential list included fat emboli, pulmonary capillary leak syndrome, and transfusion reaction, all of which could have produced her current severe decrease in oxygenation and impairment of ventilation. However, the impairment was starting to resolve and she was expected to fully recover to her baseline ventilatory function. With standard medical care, she was expected to be able to be discharged from the ICU within 48 hours. She would normally need continued observation, wound care treatment for her incisions, and in-hospital physical therapy for return to ambulation.
What are the legal considerations?
The patient was on a ventilator, but able to communicate by writing. She was originally brought to the hospital for emergency care and treatment was undertaken without specific consent from the patient or any spokesperson. Now she was requesting that her medical treatment be stopped and that she be discharged from the hospital. She was on medications for analgesia and sedation while being weaned from mechanical ventilatory support. The orthopedic surgeon believed that the patient was incompetent because she failed to understand that the course of treatment he was prescribing should be followed. He believed that she may have had cerebral fat emboli as a basis for her apparent inability to understand her current medical difficulties. None of the other physicians or the nurses who had spoken to the patient and seen her consistent written responses believed that the patient was mentally impaired. Although a judge could be summoned to investigate and evaluate the patient’s degree of legal competency, the majority of her health care providers already believed she was decisionally competent, but misguided by her religious beliefs.
What are the ethical considerations?
Respect for each patient’s autonomy is a highly valued principle of the medical ethics of the patient−physician relationship. This is a particularly strong ethic in the in the United States. European principles emphasize autonomy, but may temper autonomy considerations with principles of beneficence (“doing good”) and nonmaleficence (“avoiding harm”).
It is justifiable to continue standard medical care while doubts about the patient’s understanding of her own medical situation are resolved. However, physicians are generally not free to define a patient as incompetent primarily because the patient disagrees with their physicians’ recommendations. Capacity for medical decision-making is not identical with complete legal competence. A patient who is able to appreciate their medical condition, consider their alternative choices for treatment or refusal of treatment, and express a consistent choice with supporting reasons has decisional capacity. Physicians have a duty to place such a patient’s interests above their own medical preferences.
What is included in the range of acceptable ethical and professional responses?
The integrity of the medical profession is a societal good which should not be easily ignored or thwarted by an individual patient. Physicians are obligated to treat all their patients with respect, but are also bound by the limits of professional integrity, which would not currently allow euthanasia in the US, even if the patient requests it. Even in countries where euthanasia is discussed, it is in the context of terminally ill patients or those with unrelievable suffering, neither of which applies to the patient in this case. The orthopedic surgeon was taken aback by the patient’s request for cessation of orthopedic care and discharge from the hospital. His definition of his professional obligations to this patient included supervising her recovery from his surgery and starting her on the physical therapy required for her complete recovery. The anesthesiologist supervising her pulmonary care did not believe the patient would survive removal of her endotracheal tube at this time, and on that basis he could not accept the patient’s requests for discharge.
The patient has a “right” to expect that her requests will be honored, but no one has an absolute right to command the actions of a physician when they conflict with the physician’s deeply held personal beliefs or involve transgression of important elements of professional medical integrity. If/when the patient’s request for discharge is not tantamount to a request for euthanasia, her request may have more power to change her physician’s actions.
Possible courses of action in this case include the following:
(1) Do exactly what the patient requests.
(2) Do only what the orthopedic surgeon advises.
(3) Do what the patient requests as soon as it is compatible with important aspects of medical professionalism and the deeply held personal beliefs of the physicians and nurses who are caring for the patient (even if this requires that the care of the patient be transferred to other physicians and nurses).
(4) Compromise to the point that both the patient and the medical personnel get to do some of what they consider most important.
The patient and her advocate listened and participated thoughtfully in the ethics discussion. The patient recognized that it was not her right to command a physician, a nurse, or a hospital to do something that was clearly against their medical professional ethics. She agreed to request discharge from the hospital against medical advice (AMA) as soon as her physicians and nurses could in good conscience allow her release. The physicians and nurses were unhappy that they were unable to convince the patient to remain longer under their care as they recommended. Everyone agreed to the compromise that as soon as the patient’s survival was more likely than not likely, she would be allowed to arrange for her own discharge from the hospital. The patient was released AMA but without malice or disrespect at a time much sooner than the surgeon’s custom, but at a time when death was not likely to immediately result from cessation of hospital care.
Did they do the right thing?
Finding an ethically acceptable course of action is not the same as calculating a single correct answer to a simple mathematical problem. The multiplicity of ethically justifiable resolutions to a clinical scenario are often bewildering to scientifically trained physicians who would normally prefer to find a single most correct answer to any dilemma. In this case, they did the right thing by trying to balance the ethical principles of respect for the patient’s autonomy with the important principle that medical professionals should avoid doing harm.
Ethical behavior can seldom be described as acting “perfectly” or in such a way as to provide a paradigm for all future actions by people in similar circumstances. Acting in a way that currently seemed thoughtfully ethical, but is later found to be less ethical than an alternative is not shameful. Difficult situations inspire thoughtful reconsideration of previous decisions and actions. Contemplating future situations so that future actions can be even more ethical is the response expected from medical professionals who are dedicated to serving their patients in ways that are consistent with each patient’s consent and within the boundaries of acceptable professional behaviors. Respectful professional behavior will not only serve the patient at hand but it will also inspire respect for the medical profession by making future patients confident that their concerns will always be dealt with in a just manner.
• Religious freedom does not guarantee the free practice of religious behaviors if such behavior is harmful to others or to society. At times, conflicts between religious behavior and societal interests occur in the setting of medical care.
• Ethics consultation services can be useful when unusual or seemingly irresolvable conflicts between patient wishes and physician professional standards arise.
• An ethics consultation requires the participation of all interested parties, including the patient, patient’s caregivers, family, and religious support if available, the physicians, and hospital representatives.
• Ethics consultation includes a process of outlining the medical situation, legal considerations, ethical concerns, a range of acceptable ethical and medical outcomes.
• Ethical issues may not lend themselves to a single correct answer; a number of solutions are usually possible, and none may ideally meet the desires of all parties.
• Difficult ethical problems should inspire thoughtful reconsideration of previous actions with a goal of better understanding and preparing for future conflicts.
• Respectful physician behavior is key not only to caring for the present patient, but to assuring future patients that their concerns will be dealt with in a just manner.
1 Wisconsin v. Yoder, 406 US 205 (1972).
2* Margolick. D. (1990). In child deaths, a test for Christian Science. The New York Times, Aug 6. The New York Times.com http://www.nytimes.com/1990/08/06/us/in-child-deaths-a-test-for-christian-science.html?pagewanted=1.
3 Guzder, D. (2009) When parent call God instead of the doctor. Time. Feb 5. Time.com. http://www.time.com/time/nation/article/0,8599,1877352,00.html.
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