Chapter Outline
Ethics Consultation and Resources
Every clinical and public health decision has ethical components that are at times difficult to recognize and process. As John Glaser noted, there are “no ethics free zones.” In the context of clinical care, ethical awareness is as essential as pathophysiology to bring about a successful patient outcome. For the physician assistant (PA), the stage is set for complex ethical dilemmas given their role in decision making and leadership. Also, being a dependent practitioner embedded within a complex health care team is apt for ethical dilemmas or uncertainty. Given the ubiquitous nature of ethical issues, all clinicians must familiarize themselves with ethical analysis and decision making. The study and application of ethics are not reserved for the ivory tower or owned by an ethics consultation services: Significant and complex ethical conundrums emerge in all clinical settings with great frequency, and thus each provider will need to have a foundation in moral reasoning to assist in achieving excellent patient care. This chapter provides that foundation and is germane for PAs at all levels of their career.
Chapter Organization
This chapter constructs a foundation in ethics by introducing relevant historical and contemporary ethics cases alongside the methods of clinical ethics analysis. The organization of this chapter is unique in that we deliver the majority of ethics learning objectives through case-based reasoning. Our approach is functional for the study and application of clinical ethics. This case-based methodology relies less on formal theories, although we will discuss them intermittently throughout. Our goal is to provide practicing clinicians with a general understanding of some common ethical issues one might see in a variety of practice settings. Through this broad survey, we hope to provide a foundational understanding of certain ethical terms, principles, and theories that are generalizable to other situations. Given this textbook’s diverse readership, the case studies presented highlight issues for the PA as a student, educator, clinician, and leader.
What is Ethics?
Clinical ethics is the field of study and applied practice toward ethical issues that arise in the practice of medicine. Those practicing ethics specialize in areas such as business, policy, and bioethics. The specialty of bioethics focuses on moral dilemmas as they intersect with biology and the policies and practices of medicine. Encompassed within this broad field are ethical queries within the areas of clinical, public health, and research. This text is predominately focused on clinical ethics but introduces public health and research ethics.
Ethical uncertainties and dilemmas are ubiquitous regardless of clinical setting or specialty. When a clinician is asked to identify bioethical cases, she or he might turn to visible and often deliberated end-of-life issues. This period in the life course engenders ethical issues such as futility, the right to refuse, surrogate decision making, and physician-assisted suicide. Additional oft-mentioned ethical dilemmas such as conflict of interest, decision-making capacity, and informed consent are equally visible. However, many of the more prevalent ethical issues are less palpable. These include ethical questions such as How much time will you spend with a patient? Should you prescribe a less effective treatment because it does not require insurance company prior authorization or costs less? Will you penalize patients who are late, unvaccinated, or nonadherent with a treatment plan?
Theories and Principles
The literature on theories of clinical ethics is vast, ranging from applications of standard ethical theories, such as consequentialism to virtue and newer interpretations of narrative ethics. Although these established theories are often useful and valuable to ethical decision making, our preference is to think about ethics cases in a more comprehensive manner using values, principles, concepts, or ethical considerations that factor in the care of patients. This is different from the theory-based approach that most authors use that focuses on a central value or values. Many of our readers are well aware of the “four principles” of health care ethics : autonomy, nonmaleficence, beneficence, and justice. However, we believe that focusing on only principles is too narrow for clinical ethics. Thus, throughout our case presentations, discussion, and analysis, we invoke a larger array of principles, theories, concepts, and values. This method provides readers with a broader depth of knowledge of ethics and practical application in addressing ethical issues.
Methodology
To assist with decision making and resolution of complex ethics cases that arise during the daily care of patients, many individuals have developed frameworks and case analysis methodologies. Our preference in methodology is a hybrid that includes three methods. The core of our method is the approach developed by Kladjian et al., which views ethics cases with a reasoning process similar to all clinical encounters ( Fig. 34.1 ).
This methodology provides a systematic process that readers can use to address ethical conflicts or uncertainties they face in their daily practice. We will use the following case to illustrate our preferred methodology.
Mrs. Roberts is a 68-year-old woman with metastatic colon cancer that has spread to her liver and lungs. She is bedridden and is currently residing in her daughter’s home. She recently was hospitalized for a severe case of pneumonia. The patient is unable to speak for herself because she also has end-stage dementia. The critical care PA approaches the patient’s next of kin, her daughter Regina, about resuscitation status. Regina states resoundingly, “I want her to be resuscitated no matter what.”
Mrs. Roberts never completed an advance directive and has no other living family members. The providers are concerned with resuscitating Mrs. Roberts when they state, “CPR [cardiopulmonary resuscitation] cannot bring Mrs. Roberts any clinical benefit.” The clinical staff believe that resuscitation is futile and do not want to perform it. The surrogate wants CPR performed.
The first step in the process is to identify clearly the ethics problem or concern. As others have pointed out, getting clear on the presenting ethical issue is often part of the battle. In the case of Mrs. Roberts, the ethics problem is that the clinical team believes that CPR should not be initiated, and the family disagrees.
The next step in the process requires the individual to gather and organize data. In this step, we rely on another methodology to look at the broad array of facts that one needs to consider. The method is from Jonsen, Siegler, and Winslade and looks at gathering data ( Fig. 34.2 ). Each section of “facts” looks at a different aspect of the patient’s care and how it might impact the ethical decision-making process. Medical indications asks the reader to look at diagnosis, prognosis, treatment options, and goals of care of any clinical encounter. Patient preferences ask the reader to look at the clinical encounter from the patient’s viewpoint, considering whether the patient can make decisions or if unable, whether he or she previously stated any preferences or whether he or she has a surrogate to make the decision.
The next step in the process asks whether the issue is really an ethics problem or concern and, if so, what the ethics question is. Mrs. Roberts’ case is a classic ethical issue surrounding futility or appropriateness of initiating CPR. The ethics question is likely, given the providers’ obligation to not cause unnecessary harm and to provide interventions that will benefit the patient is in conflict with the surrogate decision maker’s right to decide on behalf of his or her loved one.
Next, the reader should consider whether more dialogue is needed or whether more information should be sought. In our case, perhaps the clinicians should seek outside input on the success rates of CPR in patients in Mrs. Roberts’ condition. Or perhaps more dialogue with the patient’s daughter is needed to determine her level of understanding.
At the crux of any ethics case, a decision will have to be made, and that decision should be based on ethics values, concepts, principles, and so on. Thus, after gathering sufficient information through chart review and meeting with the clinical team and family, an ethics recommendation should be made based on values. In the current case, one could recommend that CPR should not be performed based on the principle of nonmaleficence, claiming that starting CPR would only cause the patient unnecessary harm.
American Bioethics History
This section analyzes several noteworthy moments in recent United States history that informed clinical ethics. These historical accounts are particularly useful because several illustrate ethics beyond the PA and patient encounter. This extension includes ethical dilemmas in the research and public health space. It is little surprise that many of our bioethical historical accounts took place in the 1960s and 1970s, when we find a frustrated community reaction to a dramatic technological change in the hands of physicians who practiced medicine in a paternalistic fashion. The United States is a fascinating place to study bioethics given the country’s unique health economy, history of social inequality, and biotechnology growth over the past several decades.
“God Squad”: An Early Ethics Committee
In 1961, a committee was formed in Seattle to determine which patients would be hooked up to a new machine designed to filter blood for those with end-stage renal disease. This committee was charged with the difficult task of deciding who would receive this early and expensive form of hemodialysis. Given economic and dialysis equipment constraints, the committee would ask themselves who should be chosen and on what basis. This charge was undertaken by a committee of seven non–bioethics-trained citizens—a lawyer, minister, banker, housewife, state government official, labor leader, and surgeon—selected by the King County Medical Society. They decided on factors such as gender, number of dependents, marital status, education, income, and emotional stability alongside clinical factors. Many criticized the committee of using subjective criteria and allowing for “values” to creep into what some may have claimed was a clinical decision. It was famously said, “The Pacific Northwest is no place for a Henry David Thoreau with bad kidneys,” given his lack of employment, children, and religion. These concerns around the use of what some deemed inappropriate criteria led to the group being called the “God squad.”
Tuskegee Study
The Tuskegee study was implemented in 1932 and remains one of the more sobering ethical violations of human experimentation in U.S. history. Tuskegee was an observational study of 399 subjects infected with syphilis matched with 200 similar but noninfected control subjects. A variety of morbidity outcomes were measured with the plan to follow study participants until death. As the history of Tuskegee unfolded, it is important to understand that those enrolled in the study possessed little capacity to avoid the undue influence the researchers had over them. Most of the research participants were illiterate, poor, and African American.
By 1947, penicillin was recognized as the highly successful treatment for syphilis. Despite this accessible information, the Tuskegee research team did not discontinue the study or transition to a study design that provided scientific value given the new treatment paradigm. The ability of these study participants to make autonomous decisions was further impacted by coercive practices from the research team. There are reports stating researchers made false claims of therapeutic benefit enticing participants to follow up. These follow-up visits even included lumbar punctures. The study continued until 1972 when popular media and public outcry influenced public health officials. In addition to the men who died of untreated syphilis, 40 wives and 19 children contracted syphilis. The Tuskegee study illustrates how vulnerable communities are at risk for unethical human subject research. These communities are also at risk for unethical practice in busy clinical settings where these often-complicated patients may receive less comprehensive medicine. Many of the contemporary cases presented in this chapter highlight examples of this concern.
Common ethical dilemmas in human-subject research include unacceptable risk-to-benefit ratios, a lack of independent review and informed consent, and invalid research with low scientific value. The Tuskegee study failed in each of these areas. For example, given the state of knowledge surrounding untreated syphilis and the known benefits of penicillin, the participants should have received updated informed consent. Moreover, the risk-to-benefit ratio and scientific value should have called for the cessation of the study. Second, the study design lacked oversight, accurate data collection, and overall low validity that contributed to low scientific value.
Beecher Papers
In 1966, Dr. Henry K. Beecher published a landmark article titled “Ethics and Clinical Research” in the New England Journal of Medicine . In his paper, he reviewed 22 human-subject studies and found that many of the studies had many of the aforementioned common ethical research concerns. Frequent ethical concerns included a lack of informed consent, proper study oversight, and study methods without validity or scientific utility.
Through Dr. Beecher’s work, we realize that the Tuskegee study was not unique and that ethical dilemmas were prevalent throughout a variety of clinical questions, research settings, and study populations. These findings are germane to the clinical setting as well. One theme throughout Beecher’s paper is how researcher bias can create unethical and invalid outcomes. Clinicians are also subject to bias, which influences the lens through which they view patient history, develop treatment plans, and deliver informed consent.
Belmont Report
The Beecher paper was one of several professional and popular publications expressing similar concern over the state of U.S. human-subject research during the 1960s and 1970s. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research was formed out of the National Research act of 1974. The commission produced a summary document titled the “Belmont Report” that established ethical principles necessary for acceptable human-subject research. The major themes were respect for persons, beneficence, and justice. This report helped articulate the ethically relevant goals of research that differ from goals in a PA and patient interaction. The Belmont report contributed to the movement that led to institutional review board requirements. These review boards have several charges, including ethical analysis of human-subject research.
Quinlan Case
Throughout the era in which the Dr. Beecher and the Belmont papers were authored, we saw innovative and paradigm-shifting technological change in medicine, including critical care and mechanical ventilation. Some of these changes created ethical questions for which little precedent existed. We see similar unprecedented technological developments today with deep brain stimulation, reproductive technology, and genetic testing.
In 1975, Karen Quinlan, at the age of 21 years, consumed alcohol along with a benzodiazepine or barbiturate at a party. This led to a prolonged respiratory suppression, resulting in her sustaining a brain injury. Ultimately, Karen would be diagnosed as being in a persistent vegetative state. At the hospital, she was placed on a ventilator and nasogastric tube for nutrition. Karen experienced decorticate posturing while in this vegetative state. We now know that recovery from this state is very unlikely. The family had little help and was concerned about her suffering, which led to a request for withdrawal of ventilator support in the fall of 1975.
The physicians caring for Karen feared criminal and malpractice repercussions and did not follow through with the family’s request for ventilator cessation. This issue went before a lower court, which expressed uncertainty as to what Karen would have wanted in this situation given lack of advanced directives and allowed for the continuation of the ventilator. Ultimately, in 1976 the New Jersey Supreme Court heard the case and found that the family of a dying incompetent patient can decide what a dying patient would have wanted, provided the surrogate can establish this preference according to state-specific standards for evidence. However, the hesitant clinicians and Catholic hospital were reluctant “to kill this patient.”
The Quinlans, in conjunction with the clinical team, made the decision to wean Karen off the ventilator. The family was unaware that this slow process might result in the return of respiration. As a result, Karen resumed breathing without assistance but continued in this persistent vegetative state. She spent the next 10 years in a nursing home in a vegetative state. The family did not think they had all the information to decide on a weaning process versus immediate cessation of ventilation.
This simplified historical account of Karen Quinlan highlights several areas in which ethical discourse has and continues to contribute significantly toward the practice of medicine. First, how do we define death? Second, what is considered extraordinary medical action in the setting of a persistent vegetative state? Third, how can we be confident that a substitutive judgment made by the surrogate reflects the preferences of the patient for whom the decision is being made?
Cases
Decision-Making Capacity
Ms. Smith is a 26-year-old woman with a medical history significant for a developmental disorder with an unknown etiology, manifesting in an intellectual disability (IQ between 60 and 80). She presents to the clinic with her husband today complaining of difficulty conceiving. This is her third time presenting to the clinic over the past few years. Primary conception guidance was given to the patient and her husband during the previous two visits, but the patient never followed up. Ms. Smith denies any family history of conceiving or any other concerns. The patient asks the PA directly for Clomid, as she states, “I need help conceiving.” The risk factors of using medication are discussed with her and her husband at length, as the patient is at high risk for complications. In addition, she is informed that a strict regimen must be maintained when using these medications; failure to do so increases her chances of having an adverse outcome. The patient states, “I don’t care about these risks. Just give me the medications.” The PA attempts to follow up for understanding and why she does not care, and the patient provides no response. Should the PA prescribe the medication?
This case hinges on whether the patient has decision-making capacity regarding the proposed or requested intervention. Decision-making capacity is a set of cognitive abilities that a patient possesses. The components of decision-making capacity include the ability to understand the information, evaluate the risks and benefits of the proposed plan, use reason to weigh the decision, and communicate a decision ( Fig. 34.3 ).
It is key that all understand that capacity is decision specific, so in the case of Ms. Smith, she may not have the ability to make a decision regarding Clomid, but that does not mean she lacks capacity for other medical decisions. Each decision must be assessed separately. This is not to claim that a formal check box approach to decision-making capacity is best. Rather, this process for checking a patient’s capacity is often an internal dialogue for the PA that gauges the patient’s cognitive abilities.
It is also important to mention that mental illness or psychiatric disorder does not automatically eliminate the possibility for a patient to have decision-making capacity. Studies have shown that patients with numerous mental illnesses maintain the set of cognitive abilities required to possess decision-making capacity. There may be parts of the information that Ms. Smith cannot understand (e.g., she may be unable to comprehend that one risk or benefit of taking Clomid is the increased chance of having twins or triplets), but simply because she is developmentally disabled does not mean she lacks capacity.
In terms of the ethical decision-making framework discussed earlier, capacity is the essential ethical concept and the ethical appropriateness of providing the patient the medication hinges on whether she has capacity. If she does, we believe it would be ethically permissible to provide her with the medication even though there are increased risks to providing the drug. If it is determined that the patient lacks decision-making capacity, it may be ethically permissible to refuse to provide the medication until further conversations could be had with her authorized decision maker. The case is particularly ethically complex because, if the patient does not have the capacity to make the decision regarding the medication, her surrogate—in this case, her husband—could be authorized to consent to it.
Informed Consent
Mrs. Garcia is a 46-year-old Argentinian woman with a past medical history of hepatitis C. She moved to the United States from Argentina 15 years ago with her children. Her husband works full time while she has cared for her three children and their home, speaking primarily in her native language. Her family has heard of new medications that are curing hepatitis C and want Mrs. Garcia to begin treatment. Her primary care physician makes a referral to a local hepatology office. Mrs. Garcia, Mr. Garcia, and their eldest daughter arrive at the appointment. Upon initial intake survey with the medical assistant, they refuse interpretation services, and the family states that the patient is a fluent English speaker. After the patient and family are roomed, the hepatology PA again recommends the presence of an interpreter during this appointment. The PA has a concern that the in-depth discussion that is required to educate about the benefits and risks of hepatitis C treatment will not be fully understood by the patient. The family and patient continue to refuse interpretation services because they can “understand English.” The PA agrees because of time constraints.
After reviewing Mrs. Garcia’s past medical history and laboratory study results, the PA decides the appropriate medication regimen. The PA then attempts to have a conversation with the patient and family about treatment options, medication compliance, adverse effects, and risks and benefits of the proposed hepatitis C treatment course. Throughout the interaction, the PA makes a concerted effort to ensure the patient understands by trying to engage in direct dialogue with the patient. The patient often looks to her husband and daughter for reassurance and understanding. The daughter interprets portions of the interaction and states: “We all understand.” However, the PA has a concern that the patient may be agreeing to treatment without shared decision making that is necessary for informed consent to treatment. The patient states, “I am willing to do anything to be cured of hepatitis C.” Has Mrs. Garcia provided adequate informed consent about her hepatitis C treatment? Should the PA agree to provide the medication to treat the patient’s hepatitis C?
Informed consent is the practical application of respect for the patients’ autonomy. When a patient seeks medical treatment, he or she is seeking expert advice about diagnosis; treatment options; and depending on patient preference, recommendations on treatment. Seeking medical treatment is rooted in trust. The patient trusts the provider will avoid causing harm and will act for the greatest benefit of the patient. The process of informed consent requires mutual participation, good communication, and mutual respect between the provider and the patient. The provider should explain the nature of the patient’s problem, recommend a course of treatment and provide reasons for the recommendation, propose options for alternative therapies, and explain the benefits and risks of all options. The goals are for the patient to understand the information, assess treatment choices, and agree or disagree with the provider’s recommendation.
A provider needs to ensure that informed consent is obtained with every medical decision or intervention. As a provider, you have an obligation to have a conversation with your patient. The information the PA provides should be presented in an educationally, linguistically, and culturally accessible manner. This will assist the PA in assessing the patient’s decision-making capacity. Mutual participation between the patient and provider is necessary to discuss the medical problem and recommend and discuss options. To contribute her or his part of the relationship, the PA should disclose all necessary information about the disease, prognosis, recommended intervention, and choices. Finally, after determining that the patient understands and has decision-making capacity and the provider discloses necessary information, the provider should ensure that the patient has voluntarily decided to accept or reject the therapeutic option recommended. Following these steps will ensure the patient has provided informed consent for each clinical scenario.
In this case, the PA provides his opinion about the nature of the patient’s problem: hepatitis C treatment to cure the patient. He has a lengthy discussion about the course of treatment, risk, and benefits, but because of the refusal of an interpreter, the interaction was without what the PA perceived as mutual participation. The PA is unsure if the patient has an understanding of her options or if she has other questions about the risks, benefits, and possible adverse effects of the new hepatitis C medications. Because of the uncertainty on behalf of the PA, we believe the patient did not provide informed consent. It would be ethically permissible to wait to provide her with the hepatitis C medication until informed consent was obtained. One option would include the PA’s requiring the presence of a trained medical interpreter to facilitate a conversation with the patient. This conversation could work toward fulfilling the criteria for ethically appropriate informed consent. Suggesting Mrs. Garcia to return to the clinic for a second appointment to continue the process would be advisable. This ensures that the patient voluntarily agrees to the treatment and that she will be able to follow the plan of treatment rather than what appears to a lack of understanding or mere agreement with her family’s decisions. Mrs. Garcia and her family trust that the PA will provide only the best care. However, that trust does not ensure the patient knows or can recognize signs or symptoms of the drugs’ adverse effects.
Surrogate Decision Making
Mr. Johnson is a 77-year-old man who presented to the hospital after being found with altered mental status in a local mall. He arrives at the hospital, and the clinical team begins their workup. Upon their review of his electronic medical record, they determine that he was recently diagnosed with esophageal cancer, and initial imaging studies suggest metastatic disease present in several bones and both his liver and brain. Before any further review can be done, Mr. Johnson has a cardiac arrest and is unresponsive for at least 20 minutes. Mr. Johnson is subsequently admitted to the intensive care unit (ICU) for further workup. While in the ICU, he continues to decline and requires escalating levels of care (i.e., increased pressor and ventilator support). The medical team feels reasonably confident that Mr. Johnson will not survive this hospital admission, perhaps not even the next few days. On day 3 of the patient’s admission, his wife arrives and meets with the medical team. The team informs her of her husband’s status and that “he will not” leave the hospital alive. The patient’s wife demands that the medical team pursue all aggressive measures. When the medical team asks her, “Why do you think he would want that?” she replies, “I want my husband to live.” How should the provider proceed?
There are three standards that health care providers should ask surrogates to adhere to when making a decision on behalf of another individual: the patient’s expressed wishes, substituted judgment, and best interest. When surrogates make decisions on behalf of another individual, we are in essence asking them to stand in the shoes of the patient for the time being and make a decision as they believe the patient would. Thus, the first standard asks the surrogate to consider the patient’s clearly expressed wishes from the past and whether they cover the current situation. For example, if Mr. Johnson had stated that he would not want to be placed on breathing machine, regardless of the circumstances, the surrogate should consider whether these wishes would apply in the current situation. In this setting, some have called the surrogate more of an information provider rather than a decision maker because the surrogate is providing information to the medical team regarding the patient’s wishes.
If a patient’s wishes are unknown, then a surrogate should switch to making a decision based on substituted judgment. A concept borrowed from the legal realm, substituted judgment requires the surrogate to consider the patient’s past goals, values, and behaviors to make an inference about what the patient might want in the current context. For example, a patient may have lived her life running every day, enjoying the interactions of others, seeing real value in the ability to interact with her family, and so on. From these life experiences and past behaviors, surrogates are asked to make an inference about what the patient would want in the current state given this information.
If the above two are not applicable (i.e., a patient whom the surrogate is unaware of any relevant past behaviors, values, or goals or has no expressed wishes), then the surrogate should switch to a best interest standard of decision making. This standard requires the surrogate to take a more disconnected approach to decision making and consider what a reasonable person might want in the given circumstances. The surrogate should consider what a reasonable individual might perceive about the treatment plan.
In the current situation, the wife’s language should give the providers pause because she appears to make decisions for her husband from her own standpoint and not based on the patient’s preference. The medical team should work with her to understand whether the patient had ever clearly expressed preferences regarding the end of life, and if not, how a substituted judgment or best interest standard may apply. It may be helpful to the clinical team to consult their local ethics consultation service to assist with the decision-making process. The ethics consultation service can work with the clinical team and patient’s family to determine if the patient ever discussed his disease with any other clinical providers. In addition, they can help explain to the team and wife what this preference means in this context.
It is likely given the progress of the patient’s disease that some of his previous health care providers have discussed these issues with him and, if not, that the patient has exhibited behaviors in the past that one could use to infer about what he might want now. This is not to say that all interventions should be offered; rather, a medical team should offer those that they see as clinically appropriate and consistent with his goals, values, and behavior.
Advance Care Planning
Ms. Arnold is a 67-year-old woman who presented to the hospital after being found unresponsive. The emergency department physicians believe the patient has sustained a severe stroke and admit her to the neurologic ICU. Upon neuroendovascular workup, the patient is found to have had an aneurysm. She is placed in a medically induced coma given the severity of the aneurysm. Susan, the patient’s surrogate decision maker, arrives at the hospital later that day with Ms. Arnold’s advance directive. The documents specify that Susan will be the patient’s health care power of attorney and will have all the rights afforded to her as such. In addition, the patient has completed a living will that specifies that she does not want to be intubated. Susan presents the paperwork to the PA and asks that the patient be immediately taken off the ventilator. The ICU team is concerned with Susan’s decision making but understand that the patient indicated that she did not want to be placed on a breathing machine. They are particularly concerned because the patient has a reasonable chance of regaining normal functioning, but it will take a significant amount of time to determine her prognosis and for her to recover. Should the medical team follow the surrogate’s request to follow the advance directive and take the patient off the ventilator?
Advance directives are written or oral statements patients make during a time of capacity regarding the preferences and wishes for treatment during a period of incapacity. There are generally two types of advance directives: living wills and health care agent appointments. Living wills are documents in which a patient records his or her future treatment preferences. Most living wills specify interventions that a patient would or would not want in a future health state (e.g., ventilation, surgery). Most living wills specify certain medical criteria that need to be met before the treatment preferences are activated. For example, some states require that treatment preferences are conditioned on the patient’s imminent death or that the patient is in a certain neurologic state (e.g., permanently unconscious).
Health care agent appointments designate individuals whom the patient wants to make decisions for him or her in the event the person cannot make the decisions him- or herself. Usually, patients select a decision maker whom they can trust to make decisions that the patient would consider authentic and reflective of his or her values, goals, and life.
Of the two documents, health care agent appointments are more flexible in that the person designated can accommodate the particularities of a certain clinical picture. However, living wills often make blanket statements (e.g., “I do not want to be placed on a ventilator”) but fail to accommodate the nuances of patient preference or clinical care.
Ms. Arnold’s case is particularly interesting because we do not know the specifics of her advance directive. Assuming that her directive is similar to the majority of living will documents, it is unlikely that her treatment preference section would address a fixable condition. If her treatment preferences were tied to particular clinical scenarios (e.g., terminal disease), then it is reasonable to conclude that the directive would not apply. This is not to say that the directive could not inform the decision making of the surrogate and medical team but only that it would not dictate treatment in the sense that one generally believes living wills to do so.
Limits to Patient Choice
Mr. Thomas is a 64-year-old veteran who is a new patient at the practice, coming in today for his wellness visit. He has a history of diabetes, congestive heart failure, and obesity. He had scheduled an appointment with Dr. Robertson, but she called in sick today. Thus, Mr. Thomas’s appointment has been moved to the PA’s schedule. The PA is Tim Nguyen, a 45-year-old Asian American man who is new to the practice but has worked in health care for more than 15 years. Mr. Thomas presents to the office and learns of the change in provider for today. He is visibly upset but knows the appointment has to proceed. He goes through with the appointment, meeting with PA Nguyen for about 15 minutes. All of his questions are answered, and he leaves the examination room in what appears to be a good mood. On the way out to schedule a follow-up visit, Mr. Thomas requests to speak with the office manager. He explains to her that under no circumstance “should I ever be scheduled to see Nguyen again. I have no desire to have anyone from the East take care of me. I fought them for a reason, and don’t have any desire to interact with them.” The office manager can see that Mr. Thomas is extremely agitated. She does not know whether she should honor his request.
Most legal and ethics scholars agree that capacitated patients have a right to refuse recommended treatment. This right derives from the principle of autonomy that can control what providers do to them. Having this right does not entail that a patient can request or demand treatment from a provider, including choosing a provider for discriminatory reasons. Most would agree that patients are free to find providers based on their preferences (e.g., a patient may prefer a female PA to a male PA), but allowing patients to choose based on discriminatory reasons does not appear to give clinicians their due (i.e., meet the principle of justice). Furthermore, allowing such behavior to continue in a medical practice undermines the patient-provider relationship.
The challenge in the case of Mr. Thomas is that it appears that his decision to not allow PA Nguyen to care for him is based on a history that has significant consequences for the patient; that is, the patient created a frame of reference for those individuals from Eastern Asia as antagonistic and believes they are not here to help him. A clinician in this setting should attempt to understand Mr. Thomas and see if something could be done to facilitate building a relationship with the PA. If nothing can be done to repair or establish the relationship and the clinicians do not believe that having PA Nguyen treat Mr. Thomas will have a significant clinical impact on Mr. Thomas or endanger PA Nguyen, then they should inform him that they cannot honor his request. Mr. Thomas does have the opportunity to seek another provider who can fit his needs, but the practice should not in general honor request for providers based on discrimination.
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