Ethical Dilemmas with an Elderly Christian Scientist
Ethical issues are frequently encountered in caring for elderly patients in both acute and long-term care settings. The authors describe a case concerning an elderly male with a newly diagnosed advanced dementia and progressive neurologic disorder, who did not wish to be evaluated or treated based on his Christian Science religion. The authors explore the ethical dilemmas, describe the various ethical principles involved, and illustrate the complexity of medical decision-making. Ongoing discussions with family and appropriate multidisciplinary consultations are key to the clinical management of such cases.
Law enforcement discovered an unidentified male wandering down a rural road after he had apparently abandoned his vehicle after hitting a mailbox. Mr. A was brought to a local emergency department for evaluation, where he was noted not to be able to respond to questions. Evaluation with complete blood count, electrolytes, urinalysis, urine drug abuse survey, and electrocardiogram were within normal limits. A computed tomography scan of the head was negative for acute pathology. He was then transferred to our facility for admission to the geriatric psychiatric unit for his safety and further evaluation.
Admission examination showed an elderly male who was malodorous and poorly groomed, with visible dirt on his skin and clothing. There were no signs of physiological or emotional distress, and he lay down quietly on his hospital bed with minimal interaction. Multiple attempts to interview him were unsuccessful, as he responded to all questions with the word “no.” A closer inspection of his belongings revealed multiple documents referencing Christian Science, including a note encouraging him to continue seeing a Christian Science practitioner rather than a medical doctor, numerous business cards, expired driver’s licenses, multiple card keys and receipts from local motels, a large amount of cash, bank statements with large balances listed, and good quality clothing stained with dirt and urine.
During his hospitalization, Mr. A continued to respond only “no” to questions. He indicated at times, using body language or broken speech, that he meant to convey an answer other than “no”; for example, when asked how many children he had, he held up two fingers while saying no. Despite this language deficit, he was notably able to decline treatment by writing to his treating psychiatrists, “No medications. Christian Scientist.” He did not demonstrate any affective or psychotic symptoms. Gross physical inspection revealed prominent bruxism; he refused a physical examination other than auscultation of his heart and lungs, which were normal.
Mr. A’s former spouse contacted the hospital and provided documentation that she, along with his sister, were his appointed power of attorney (POA) for healthcare decisions. She described a history of progressive decline in his ability to communicate over the last few years and repeated episodes of acute confusion. Several months earlier he left his home and traveled a few thousand miles to another state, where he spent time moving from one motel to another. Approximately three months earlier, he had been hospitalized at another facility after law enforcement had found him wandering in a confused state. She stated that he underwent a medical and neurological work-up that was “all normal.” That facility had recommended placement in a nursing home or assisted living facility, and discharged him to care of his sister. While visiting various facilities with his sister, he “escaped,” as he had continued access to his vehicle and resumed his travels between motels. His family had not had direct contact with him, although the desk workers from the motels would call his sister to give her updates on his condition.
Mr. A’s former spouse provided documentation confirming that he was a practicing Christian Scientist, and that he would not want to have any medical evaluations or interventions. She, however, preferred that decisions regarding the treating psychiatrists’ recommended evaluation and placement be discussed with his sister instead.
While on the unit, Mr. A’s behavior was pleasant and cooperative, but hygiene and grooming was poor, and he required prompting to perform his basic activities of daily living. The process of communication improved with a dry erase board, but his written statements were significantly fragmented. His sister consented to a limited evaluation, including basic laboratory studies, neuropsychological testing, and neurology and speech pathology consultations. Laboratory results were within normal limits, except for a urinalysis that showed a urinary tract infection. Both Mr. A and his sister declined repeat testing or treatment with antibiotics. Magnetic resonance imaging of the head was attempted but not completed, as the patient would not remove a jacket with metal buttons, and attempted to elope from the radiology department. Neurological examination revealed prominent diffuse muscle fasciculations, ideomotor apraxia, and atrophy of intrinsic hand muscles. Speech pathology consultation revealed severe verbal apraxia, moderate mixed spastic and flaccid dysarthria, language deficits, and probable cognitive deficits. The combination of language, cognitive, and neurologic deficits were suggestive of possible frontotemporal dementia with upper motor neuron disease. A more comprehensive evaluation was recommended, including repeat brain imaging, spinal fluid examination, electromyography, and electroencephalography, all of which Mr. A’s sister declined on his behalf. A neuropsychological testing was attempted to better characterize his cognitive deficits, but he was unable to participate meaningfully with the testing.
Throughout hospitalization, Mr. A’s mood remained stable, and, despite the significant cognitive deficits, he did not demonstrate any psychotic thought content. He was subsequently discharged to the dementia unit of a local nursing home.
Unfortunately, Mr. A was readmitted to the geriatric psychiatric unit one week later after having escaped from the nursing home multiple times, where he apparently learned to manually override its security system. His sister hesitated to make further healthcare decisions for him, so an emergent guardianship and conservatorship was requested by his treating psychiatrists and granted by the court. With the legal substitute decision maker in place, he was discharged to another facility with a higher level of supervision and security.
Approximately six months following discharge, Mr. A developed aspiration pneumonia and was briefly hospitalized at another hospital, where he was intubated and received antibiotics as permitted by his conservator. He failed a trial of extubation, and was then transferred to our facility for further medical care in the critical care unit. There he was noted to display significant signs of motor neuron disease with diffuse fasciculations, muscular atrophy, diffuse weakness, diffusely brisk reflexes bilaterally with bilateral Babinski signs, and lower extremity spasticity. Because his respiratory failure was presumed to be caused by motor neuron disease, and he would likely fail extubation, a tracheostomy was recommended to support his respiration. Following lengthy discussions with his conservator and sister, who also consulted her Christian Science practitioner, consent for this procedure was not granted. Instead, they requested extubation and palliative measures for comfort, including use of morphine drip for air hunger. Mr. A died shortly after extubation. His conservator declined to have an autopsy performed, indicating that this refusal would be in keeping with his religious beliefs.
Carrese1 recently reported the case of a vulnerable but not clearly decisionally impaired elderly woman who refused needed nursing home placement, despite significant medical risks that accompanied that decision. The case dealt with many of the issues as in this case, with the exception of the presence of the psychiatric illness and the conflict raised by religious values. The reader is referred to that source for an excellent discussion of the difficult process of balancing patient autonomy with the physician’s commitment to above all do no harm, and society’s commitment to not neglect the vulnerable. Among the multitude of ethical issues involved that presented urgent challenges in the clinical evaluation and management of Mr. A, the issue of understanding his religious commitment and its role in medical decision making adds another level of complexity to the more commonly faced issues of autonomy, capacity and the right to refuse treatment, beneficence, nonmalfeasance, and surrogate decision making.
Understanding his religion and its role in medical decision making, it was easily established that Mr. A practiced Christian Science, and that, despite limited verbal and cognitive abilities, he was able to communicate to treating physicians clearly and emphatically that he refused medications because of his beliefs. Christian scientists believe in healing through prayers, and they seek a cure through improving their relationship with God through prayer, rather than seeking traditional medical care.2 The Christian Science adherent believes that there is no reality in the physical world, and that all perceptions of illness are spiritual in origin and must be dealt with in the spiritual realm.3 They generally refuse blood transfusions, physical examinations, and medications, and receive vaccinations only when required by law. They may seek the services of Christian Scientist practitioners, church members with training in spiritual healing, or they may employ the services of Christian Scientist nurses. These nurses do not administer medication or perform physical examinations, but assist patients with practical duties such helping them to maintain cleanliness. There may be instances that require services of a surgeon or midwife; however, in general no medications are involved.3,4 The consequences of not adhering to this perspective on illness and healing are abandonment of the Christian Scientists’ world view, and consequent separation from his or her authentic self. It is not clear that being forced to undergo medical treatment against his or her will leads to the same consequences as would voluntary acceptance of medical treatment. Medical intervention is perceived as contradictory to the religious commitment, but not as a cause for the individual’s loss of his or her spiritual authenticity.
The right to exercise religious freedom is well established in moral and legal precedent in the United States, but the right to exercise that freedom in a manner that leads to serious morbidity and mortality has been interpreted with a broad range of nuance, depending on whether exercise of that freedom breaks another law of society or leads to significant risk of injury to others or to society. (For instance, public health laws regarding such contagious diseases as tuberculosis are enforced even if the individual’s religious beliefs are against medical treatment.) If the religious conviction expressed by the individual is not idiosyncratic—that is, significantly different from others who adhere to the same religion or faith commitment in similar circumstances—then it is usually accepted as not due to impairment from a mental illness. The situation is more complex if the individual claims to adhere to religious beliefs for which there is no precedent or group comparison.
Mr. A’s religious beliefs and wishes were respected throughout the initial hospitalization, and evaluations and treatments were deferred. However, when he later became severely ill with pneumonia, lifesaving treatment with intubation and medications were instituted to save his life with consent from his guardian. While not in keeping with his wishes, the decision was likely made by the guardian based on the patient’s best interest. Ultimately, Mr. A’s preferences prevailed, as lifesaving measures were withdrawn later in the course of his illness and hospitalization. Once it was determined that Mr. A would have rejected medical treatment even if he had not been decisionally impaired and had not experienced the intervening medical and psychiatric illnesses, further decisions about his care were consistent with his religious commitments. During his care, the least restrictive setting was first attempted, but once he demonstrated inability to remain in a setting that preserved his basic safety (and presumably the safety of others when he eloped on foot and was at risk of straying into traffic), he was placed in a setting that reduced that risk without forcing medical treatment that was against his religious commitment.
Do What Is Best for the Patient
Beneficence is an ethical principle based on the concept that the physician’s duty is to act in the best interest of the patient’s health and welfare. As the patient was unable to maintain himself safely outside of a secured environment, his treating physicians kept him in the hospital until such time as a safe disposition was in place for him. Beneficence also describes a physician’s duty to do what is medically helpful for patients, a principle that often directs decision-making in emergency situations. In this case, the physicians at the outside emergency room had acted under this principle when they undertook evaluation of the patient and initiated treatment (transfer to a psychiatric unit) when he was found after his motor vehicle accident and could not provide consent. It should be noted that in nonemergent situations, it would not be appropriate for a physician to treat without the patient’s—or in Mr. A’s case, the POA’s—voluntary consent, and that treatment without consent would represent battery. Thus, when the patient was found later in his initial hospitalization to have evidence of a potential urinary tract infection noted on a routine urinalysis, it was appropriate to discuss this finding with his sister before initiating further evaluation or treatment with antibiotics. She declined treatment, as she did not feel it would be congruent with his religious beliefs. The medical team acted appropriately by offering treatments for his medical conditions, with the goal of improving his physical well-being while also respecting the wishes of his sister, and later his guardian, to decline treatments not felt to be consistent with his religious beliefs.
Nonmaleficence encompasses the principle of the physician’s duty to avoid inflicting harm.6 This principle includes the physician’s duty to avoid pursuing diagnostic evaluations or treatments that are unlikely to lead to improvements in the patient’s survival or well-being. This concept is demonstrated several times in Mr. A’s case. For example, during his admission to the Critical Care service, the Neurology service recommended not performing further studies, such as electromyography, to verify the diagnosis of motor neuron disease, as there was significant evidence on physical examination that this disease was present. That service noted that the results of these studies would not have an impact on the Mr. A’s care, as he was experiencing a progressive neurodegenerative disorder for which there would not be a treatment that could reverse the disease’s course.
The American Medical Association Code of Medical Ethics limits its statement on public safety to driving ability.7 However, this responsibility may logically be extended to any activity that an impaired patient may undertake that endangers others—such as wandering on public streets in a manner that could endanger drivers who try to avoid collisions. In Mr. A’s case, there was a need to limit not only his driving but also his wandering behavior.
Competence to Say No?
Consent investigation is a complex process. Determination of an older individual’s decisional capacity to provide informed consent to a proposed evaluation and treatment is oftentimes a challenge. For informed consent to be valid, the three elements required to be present are: (1) provision of information, (2) voluntariness of decision, and (3) competence to make a decision.8 Provision of information requires a physician to disclose relevant information about the recommended evaluation or treatment that would enable a reasonable person to understand and weigh the risks, benefits, and alternative options. Voluntariness means informed decisions are made by individuals freely and without coercion. Competence is a legal determination of mental capacity, often based on a clinician’s assessment of a person’s capacity to make decisions regarding his or her care.
In general, there are four abilities that are used in the legal determination of competence, which are the same abilities assessed by clinicians in a clinical capacity assessment: (1) ability to understand information relevant to their condition and the recommended treatment; (2) ability to reason about the potential risks and benefits of their choices; (3) ability to appreciate the nature of their situation and the consequences of their choices; and (4) ability to express a choice.9,10
Essential Questions in Mr. A’s Case:
• Does he have the capacity to make his own medical decisions?
• Does he have the ability to understand
information presented to him?
• Does he show appreciation of his situation and the extent of his difficulties?
• Does he have the ability to use this
information in his reasoning process?
• Is he able to express a choice?
Determination of the level of capacity may vary as to the complexity of the decision.
Mr. A had severe language impairment that made the evaluation challenging. He was unable to cooperate with most of the testing. He demonstrated objective signs of deficits on neurologic examination. He was able to communicate his wishes in a limited way, frequently by writing in sentence fragments, or by saying no. While able to seemingly express a choice by saying no, he was not able to demonstrate any understanding or appreciation of his situation. One could argue that he had ability to learn new information, as demonstrated by his ability to learn to manually override the security system at his new living facility; however, this ability alone does not demonstrate normal cognitive functioning. Because of our inability to establish his capacity during the initial psychiatric hospitalization, and because of his inability to make his wishes known (only able to say no even when he meant yes), the treatment team worked with his sister and ex-spouse who were POAs.
The Process of Surrogate Decision Making
A surrogate or proxy decision maker is any person authorized to make decisions on behalf of another person. The two types of arrangements for surrogate decision making are those that are established before and after a person loses decision-making capability. There are various forms of POA that a person, in a competent mental state, appoints another individual to make healthcare or other decisions on his or her behalf. State laws vary regarding surrogate decision making after a person is incapacitated, and physicians should be familiar with these laws. The terms guardian and conservator generally refer to a person who has both physical custody of another person and control over that person’s property, who has been appointed by the court after the person has been deemed incompetent.
When a surrogate makes a decision on behalf of the patient, the two models that guide the decision making process are the substituted judgment and best interest model. The standard of practice is the substituted judgment model, where decisions are made based on a patient’s wishes or preferences, and not the surrogate’s wishes or preference. This model preserves the ethical principle of respect for autonomy, which requires us to honor wishes of patients that they made voluntarily when decisionally capable. If the patient’s wishes are unknown, or when it is necessary to prevent suffering, decisions are made based on the patient’s best interests, the best interest model, which may be subjective and may not align with a patient’s wish or preference.
In our case, the sister and former spouse had joint POA for Mr. A’s healthcare. The former spouse deferred all the decision making to his sister, who was initially involved in his care, and who seemed to respect his wishes as far as declining some tests and treatments. However on his second hospitalization when the patient was found to be more ill, and consistently demonstrated repeated behaviors that put him at risk of harm to himself (elopement, wandering), and his sister who lived in another state had extreme difficulty making decisions for him, a request for a court-appointed guardian and conservator was made to keep him safe, and enable him to meet his medical and other personal needs. After the person was appointed, Mr. A was discharged to a secure facility that was able to provide 24 hours of supervision for his safety. The team respected his known wishes against further medical evaluation or treatment, but the appointment of a guardian was necessary to keep him in a safe living environment.
In the care of Mr. A, the treatment team utilized many of the ethical principles that are common in the care of geriatric patients. Additionally, clinicians sought to provide treatment that would be acceptable to the patient based on his Christian Science beliefs. In addition to being aware of the common ethical issues that occur in the geriatric patient, when presented with similarly complex ethical issues, consultation with other physicians and, if available, the hospital’s ethics consult service, is recommended. Through ongoing discussion with Mr. A’s family, and later, the conservator, we were able to provide him with such interventions as placement in a secured unit that did not conflict with his beliefs, while avoiding treatments that would not be consistent with his religion.