Applying an Ethical Lens to the Treatment of People With Multiple Sclerosis

ABSTRACT

The practice of neurology requires an understanding of clinical ethics for decision‐making. In multiple sclerosis (MS) care, there are a wide range of ethical considerations that may arise. These involve shared decision‐making around selection of a disease‐modifying therapy (DMT), risks and benefits of well‐studied medications in comparison to supplements with limited information, allocation of resources and accessibility to MS care, and disparities in healthcare. We share a series of cases that illustrate ethical issues that may arise in the care of patients with MS. This narrative review articulates relevant ethical theories and frameworks that can be applied to common clinical scenarios in the current practice of MS.

1. Introduction

One ultimate goal of clinical medical ethics is optimal clinical care [1]. By incorporating ethical principles and theories, physicians can adjudicate their decisions with an ethical lens, especially when faced with difficult clinical scenarios. Medicine is fraught with ethical quandaries, leading physicians to seek out principles and codes of conduct to best advise their decision‐making, especially when two competing values are in conflict or when different involved parties are at odds. Here, we provide illustrative cases of patients with multiple sclerosis (MS) in which ethical issues arise in the clinical setting. We delve into situations in clinical decision‐making where perspectives may diverge and explore the situations through the viewpoints of various ethical theories (Table 1). The purpose of this article is not to proscribe decisions or teach ethical theory, but instead to explore the potential uncertainty of decision‐making in MS by a treating neurologist and to consider patient encounters in a way that is informed by ethical theories. These ethical frameworks, while presented in cases relevant to the care of patients with MS, can be broadly applied to decision‐making in other neurological conditions. When working through ethical dilemmas in MS, patient interactions are only one piece of the bigger puzzle. Socioeconomic factors, systemic inequities, and broader structural limitations drive additional complexities when managing patient care. We use case‐based illustrations to illustrate decision‐making in both individual clinical encounters and in improving systems that drive inequities in MS care.

TABLE 1.

Ethical theories, their core tenets, and their clinical relevance to decision making in MS [2, 3, 4].

Theory	Basic concepts	Clinical relevance in MS
Beneficence	The duty to act in the best interest of the patient	A physician's duty to share their treatment recommendations and continue to discuss this with patients who may make different decisions than the recommendation (see Case 1)
Nonmaleficence	The obligation to not cause harm to patients	Discussing potentially harmful treatments that patients may be interested in (see Case 1, part 3)
Autonomy	The right of individuals to make choices in accordance with their values and beliefs; the ability to exercise one's capacity for self‐determination	Prioritizing patient autonomy in decisions related to treatment of care (see Case 1)
Justice	Fair, equitable, and appropriate treatment of patients	Insurance coverage of DMT, recruitment for clinical trials, neurologist (and MS specialist) availability in rural areas, social determinants of health in MS diagnosis and treatment (see Case 1, part 4; Case 2)
Utilitarianism	Right and wrong actions are determined by their consequences; one should ultimately act in the way that maximizes good	Navigating challenging professional relationships and disagreements with the ultimate best choice for the patient's clinical care (see Case 2)
Deontology	The morality of choices and actions are determined by moral norms (instead of by their consequences)	Physicians may feel they have to make immoral choices because of outside forces (insurance authorizations, step therapy, not having adequate resources for patients to get to infusions, etc.) (see Case 3)
Feminist care ethics	Ethics informed by context and structural issues including race, socioeconomic status, culture, and gender; without absolute normative principles	Taking into account individual factors that impact understanding of MS as a disease as well as the factors involved in patients making treatment decisions (see Case 1, part 2; Case 4)
Narrative ethics	Use storytelling and listening to understand and evaluate decisions and moral contexts	Physicians must understand the significance of context and patient stories in the patient's understanding of illness (See Case 1, part 5)
Ross's ethics of prima facie duties	There are some duties that are morally significant (fidelity, reparation, gratitude, beneficence, non‐maleficence) but one does not supersede another	Competing principles guiding decision‐making can make it difficult to choose the most right choice
Capability approach	It is morally important to have the freedom to achieve well‐being, which should be understood in terms of capabilities and functioning	Physicians, healthcare institutions, and governments should advocate for all patients to have the capability to live a valuable life, with that judgment being unique to their individual and group norms (see Case 4)
Virtue ethics	Emphasizes the role of moral character or virtue, focused on a person or agent, with the right answer being that which a virtuous person would take	A physician's duty to care for a patient who may disagree with their recommendations (see Case 1)

2. Case 1

A 27‐year‐old female teacher with no past medical history presents with optic neuritis and is diagnosed with relapsing remitting MS based on her magnetic resonance imaging (MRI) (showing multiple characteristic demyelinating lesions in the brain and spinal cord) and cerebrospinal fluid results. Her expanded disability status scale (EDSS) [5] score is 0. In the clinic, the patient's neurologist discusses starting disease‐modifying therapy (DMT) with the patient, who shares she does not want to start any medications for MS.

This patient meets the 2024 criteria for the diagnosis of MS [6] after competing diagnoses are ruled out. In this situation, early treatment with a high‐efficacy DMT prevents future relapses and new T2 hyperintense lesion accrual in the central nervous system on MRI [7, 8]. Early high‐efficacy therapy also decreases cumulative disability over time and reduces progression to secondary progressive MS [9, 10, 11]. Low and medium‐efficacy DMTs are also superior to no DMT for her long‐term clinical outcomes. In this scenario, the clinical question of whether the physician should recommend that the patient is treated with a DMT is clear: yes. The ethical question is determining the next steps when the physician and patient do not agree about the best course of action. This is an example of the overt conflict between patient autonomy with beneficence and nonmaleficence. It is the neurologist's responsibility to share the recommendation to start a DMT as well as to share with her information on the preventative benefits of a DMT, expected disease progression without DMT, adverse effects, monitoring, and pre‐DMT evaluation required for the various DMT options. While DMTs have tolerability and safety considerations, it is accepted that the benefits of starting medication generally outweigh the safety and tolerability concerns, which can be monitored and/or mitigated. While a patient may view a potential low‐likelihood risk as harm, neurological disability from MS is also a significant harm and has a higher likelihood. Truly benign MS is considerably rare and even in these groups, over 1/3 have cognitive impairment and ¼ are unemployed, suggesting potential subclinical deficits from their disease over time [12, 13].

It is generally accepted that patient autonomy takes precedence over other ethical principles. In this situation, the potential outcomes of embracing patient autonomy include MS relapses and progressive disease when not taking the recommended treatment, which raises the question of whether beneficence should take precedence. Applying patient autonomy will likely strengthen the relationship between the physician and patient, and the patient's trust that the physician will respond to her concerns and respect her decisions.

Physicians must further weigh the harms of paternalism and disrespecting autonomy with the harms of not conveying privileged information that they have learned through their formal education and experience. Through the principles of beneficence and nonmaleficence, the physician has an obligation to share with the patient his or her reasons for making this recommendation [14, 15]. Advising this patient of her unique risk factors, such as the young age of disease onset, active demyelinating lesions, and incidence of side effects and safety events is required. Recognizing her autonomy to pause or discontinue any treatment in the future could be emphasized, as well as listening to the reasons for DMT hesitation. The neurologist could consider explaining the concept of therapeutic inertia, which is the failure to start or intensify therapy when indicated [16]. This is particularly relevant in MS since all currently U.S. Food and Drug Administration (FDA)‐approved DMTs are preventative for future worsening rather than reparative or restorative. If patients are not started on therapy (as this patient would prefer) or appropriately escalated as needed, they may accrue more MS lesions and disability and could miss the window when an efficacious drug can have the most impact and the best chance of preserving the initial level of health and functioning. Future physicians, especially outside of neurology training, may see that this patient is not on DMT and therefore falsely believe that she has a benign course of MS when this is not the case. This initial decision can have long‐term consequences in the course of the patient's life. Patients have the freedom to make individualized decisions on their treatments, but it is the physician's duty to offer regular appointments to review the patient's examination and recommendations, to educate the patient on the newest data on risk factor reduction and therapies, share guidelines and practice recommendations, and empower patients in the management of disease.

Practice Tips: Patient autonomy often takes precedence over other ethical principles, unless it causes harm to others. However, it is important for physicians to apply sometimes competing moral principles of beneficence and nonmaleficence in the education of patients and when disclosing medical information and recommendations to patients. See Figure 1 for an example of a navigation framework for incorporating ethical decision‐making into daily practice.

FIGURE 1.

Incorporating ethical decision‐making in clinical encounters.

The patient shares that she would prefer to monitor her disease instead of starting treatment, given that she was asymptomatic from her previously detected lesions until her recent episode of acute optic neuritis.

It can be difficult for physicians to describe theoretical future risks to patients who must weigh risks of treatment against their current and previous disease course. At this point, the relationship and trust between the patient and physician can become critical in the patient's future disease course. A physician‐patient relationship where the patient feels heard and respected could make the difference between the patient continuing to follow with this physician or potentially being lost to care or trying unproven and potentially harmful remedies from sources outside of the healthcare system. Feminist care ethics articulates the importance of care and relationships in ethical decision‐making, rejecting the idea of overarching abstract principles that can be applied to all choices. Instead, it focuses on incorporating an understanding of the complexity of individual situations. With this patient, the most beneficial next step is likely working on sharing educational information (on MS, the course of disease, the treatment options) and giving the patient time to learn, research, and come to a decision, while continuing to receive guidance from her physician. At the same time, a more utilitarian approach may suggest that the patient will require monitoring, imaging, and frequent appointments which can be expensive to the health care system (society) and lead to no improvement in patient‐based outcomes (unless she started a DMT). The potential benefit to one's existing patient (if she takes a DMT) often outweighs the healthcare costs of monitoring. Virtue ethics suggests that the physician in this scenario should act in the manner of a virtuous individual, which many would argue would be to continue monitoring the patient over many years, potentially throughout her lifetime.

The most important next step is understanding the patient's reasons for declining DMT. Common reasons patients may have hesitations about DMT initiation include cost, safety, uncertainty or mistrust in the diagnosis or the need for treatment, and misinformation related to the disease or DMT. The first step in this discussion is understanding a patient's specific concerns in order to address them. See Table 2 for common concerns related to starting MS DMT (or broadly, patient concerns about starting treatments in general) and proposed physician responses and next steps.

TABLE 2.

Common patient concerns related to initiating therapy and corresponding physician responses.

Patient concerns	Physican responses
Limited understanding of disease	Discussion of how the diagnosis was made, offer second opinion, share online and printed resources on the disease
Safety of medications	Discuss risks and benefits of various therapies, offer therapies with differing risk profiles
Cost of medications	Share resources for lower‐cost options (pharmaceutical companies' charitable programs)
Medication interactions	Review medical and pharmaceutical databases to confirm, share information with patients
Difficulty with adherence (for example, concerns about remembering to take a daily pill)	Pill packs, medication reminders (phone reminders, calendars), discuss treatments with easier adherence
Worries about medication administration (for example, the inability to take a self‐injectable medication)	Family or caregiver support if available, discuss other treatments with different mechanisms of administration
Reading misinformation about disease or recommended treatments	Provide patients with reliable, evidence‐based resources
Not feeling ready to make a decision	Ask the patient what would help them feel sure about their decisions, offer information on support groups (through organizations like the National MS Society)

Practice Tips: Clearly elucidating reasons for patients' decisions and overarching values can better guide patient‐specific education and recommendations.

After discussing all of the above concerns, the patient shares that she would like to start a nutritional supplement for MS instead of the DMT you are recommending.

If the supplement is not harmful, it is the physician's duty to share with the patient that there is no well‐described benefit to the supplement—that clinical equipoise exists—but that it is likely not to be harmful to take this supplement. Applying the principle of nonmaleficence suggests that there is no benefit to taking away hope or taking away from a placebo effect if it is clear the supplement is not harmful. If relevant, it could be helpful as a physician to share the changing nature of medical research and innovation, to share with the patient that our current knowledge has known limitations, but at the same time, advise that there are only a set number of well‐established treatments that are definitively shown to achieve no evidence of disease activity (NEDA) in MS. In traditional Chinese medicine, for example, it can be difficult for therapies to meet the accepted gold standard of a positive outcome in a randomized clinical trial, since treatments are so individualized [17]. Patients may therefore have different understandings of the levels of evidence that are required for evidence‐based medication recommendations. It is harmful for the physician‐patient relationship to completely rebuff the patient's proposal (unless it is clearly harmful), so the likely least harmful way forward is to share the scientific evidence for/against their proposed supplements. A libertarian approach [18] allows physicians to respect that there is no single moral narrative or intuition on the body and that rational decision‐makers (including both patients and physicians) may differ in their approach to the use of supplements without a proper evidence base. However, avoiding an MS DMT to take supplements alone is harmful and could be maleficent, even if it is an act of omission versus commission in MS care.

If the supplements are not known to be harmful, there is no presumed contraindication to taking them. In this way, the physician can recognize the patient's autonomy, her ability to research treatments and make educated choices, as well as still do a physician's duty to share specialized knowledge and recommendations (in support of improving the patient's health). In this setting, both the principles of nonmaleficence and autonomy support the patient's decision‐making when choosing whether or not to take this nutritional supplement. However, additional considerations are the high cost of some supplements, the variable quality and nature of what is being sold, abnormalities on laboratory test results that may be misattributed to MS or a DMT (for example, supplements causing liver injury and coagulopathies, or simply interfering with other laboratory tests), the potential for rare adverse events, and future health outcomes, either undescribed or still unknown [19, 20]. Preventing patients from being taken advantage of by predatory actors who offer false hope to patients is also a moral duty for MS neurologists, which can be supported by justice, nonmaleficence, deontology, and the capabilities approach. Notably, debunking of specific therapies takes time, resources, and trial participants who are willing to accept the risk of no benefits in a prolonged way.

In contrast, if the patient is interested in starting a supplement with concerning safety considerations (such as interactions with other medications, increased risk of liver disease or cardiovascular effects), it is the physician's duty to share his or her knowledge, training and recommendations, especially if the patient has not been informed of the risks. An understanding of her reasons for wanting to try these supplements and an understanding of how she came to this potentially harmful supplement would illuminate any ethical concerns that may arise. Many patients are interested in alternative treatments for a variety of reasons, including a desire to work on their health in multiple different domains or recommendations from friends and family [21]. Many MS patients—54% in one study of complementary and alternative medicine in MS patients—do not tell their physicians about the use of complementary and alternative medicine (CAM), but 44% would like the opportunity to discuss it with their physician [21]. This encounter could strengthen the neurologist‐patient relationship via (1) a patient's openness and trust in a neurologist, by being willing to bring up a type of treatment that is outside of the scope of biomedical medicine, and (2) the physician's beneficence to enforce the therapeutic relationship by being honest regarding the risks of a potentially harmful supplement. At the same time, the neurologist could share other therapies that are more evidence‐based with the patient, while still establishing that the primary recommendation would be to commence an FDA‐approved DMT.

Practice Tips: Being open‐minded to discussing the treatments and research that patients may have read about, found through artificial intelligence online, and other sources can not only strengthen the therapeutic relationship but also provide physicians with a venue to educate patients, prevent harm, and dispel mis‐ and disinformation targeting them.

The patient returns for her 6‐ and 12‐month follow‐up visits. She is accruing neurological disability based on the neurological examination.

In this scenario, many physicians monitor the patient regularly for disease activity, regardless of their current therapy. Respecting the patient's autonomy and promoting beneficence and nonmaleficence would propose that the physician should advocate at every visit for her to consider a DMT, sharing information and getting to the root of her concerns as to why she prefers to stay off of treatment. This choice to actively follow and even actively encourage and remind people with MS to return to clinic can be supported by both virtue ethics and feminist care ethics—emphasizing the value of what a virtuous agent would do and the importance of relationship‐building between a physician and patient—but must be weighed with utilitarian arguments about the allocation of resources (given limited MS specialists in the country, delays to being seen by a specialist, limited infusion centers, and health systems costs in general) as this patient is “taking the spot” of a potential other patient who may be willing to start DMT but is still waiting for an expert neurological opinion. In this situation, the key stakeholders are the patient already in the clinic and the physician, but utilitarian arguments may include future patients as a stakeholder too, in which case it becomes difficult for an individual physician to weigh potential outcomes. Principles of justice enforce fair and equitable treatment of all patients. The physician will often choose the care of his or her patients—and the current patient's future disease course—over the potential care of future patients who may not yet have access to their care (due to limited availability of neurologists and neuroimmunologists).

After a few more visits, the patient continues to worsen and decides to start DMT. She is frustrated about her disability from her prior disease activity and frustrated that the treatment is not making her better. She wonders whether she needs this medication.

This is a disappointing situation for both the patient and her physician. While the physician may feel relieved that the patient is finally on optimal therapy for her disease, this won't reverse prior lesions or their symptomatic consequences. At this stage, it can be difficult for patients—especially those who may already have historical and social reasons to mistrust the healthcare system—to see the benefit of a DMT. In several cases, the DMT will take months to take full effect and months to recognize the lack of disease progression. Indeed, the slowing of worsening is often the best‐case scenario for patients [22]. It is crucial for the physician to consider the context of the decision, which is often influenced by numerous outside factors such as historical and structural racism. The physician should consider the importance of the individual patient's narrative and the understanding of the disease and the events up to this point. Applying this kind of narrative ethics can only help the physician better understand a patient's reasoning and improve the therapeutic relationship. Since no counterfactual person to the patient can be presented beyond clinical trial data and cohort studies of other patients, the patient must believe in the beneficence of the physician. The physician in this scenario should continue to take on the role of being an advocate for what is the best treatment for this patient, which in this case is still to continue the DMT and monitor over time. Moreover, the shared decision making model can be implemented in MS. Structured, adaptive, and patient‐centered discussion that guides patients toward long‐term outcomes in MS has been proposed [23].

Practice Tips: Unexpected or undesired outcomes are difficult to navigate for patients and for physicians. Taking the time to discuss these situations and goals for the future can lead to better understanding and trust in the physician‐patient relationship.

3. Case 2

A 44‐year‐old Ethiopian male lawyer is referred to you for a third opinion on his symptoms, which have not been diagnosed after seeing multiple neurologists. In his interview, he shares with you what sounds like a history of myelitis that improved with steroids. You review his imaging which includes MRIs from this year and a few years ago during his transverse myelitis. He meets the new criteria for MS based on ancillary testing. He has undergone extensive serum and CSF testing for other, less likely diagnoses which have returned negative [6]. You render a diagnosis of MS.

In this case, a Black patient presents with a classic presentation of MS. It has taken many years before he received a diagnosis, with contributing systemic and individual factors, including race. Numerous ethical theories can be used to argue for the ethical imperative for physicians to work toward dismantling health disparities. The principle of justice argues for the equitable distribution of medical care among patients. There is a duty of physicians to be educated on health disparities. Similarly, utilitarianism—promoting the most benefit for the greatest number of people—can be considered in the setting of distributive justice to make an argument for better allocation of care in groups who are traditionally under‐resourced, such as racial and ethnic minority populations, those of low socioeconomic status, rural populations, those with disabilities, and sexual or gender minority groups. Through the fundamentals of beneficence and nonmaleficence, physicians must be vigilant and avoid propagating systemic inequalities in daily, individualized practice. This can be achieved by having standardized methods for evaluating patients with key symptoms, while also accounting for individualized circumstances. Context is relevant to understanding culturally competent care, which allows healthcare systems to provide care to patients of diverse backgrounds [24]. For example, physicians have a duty to educate themselves on the incidence of disease, in this case MS, in diverse populations so as to appropriately consider diagnostic and therapeutic strategies in patients of all races [25]. This is critical for clinicians to not overlook diagnoses in patients of certain populations where MS may have been previously thought to be of a lower prevalence.

MS trials worldwide have significant deficits in both the reporting on participants' race and ethnicity as well as recruiting a diverse patient population. One systematic review found there are 93% White participants and only 3% Black participants in phase 3 clinical trials for MS [26]. This situation may exacerbate the issue of specific demographic groups who mistrust health systems, medical research, and trials' outcomes. Mistrust of health systems and research for African American patients has well‐justified historical underpinnings [27, 28, 29]. Still, a commonly cited reason why people of racial and ethnic minorities are not participating in MS research is that they were simply not asked to participate, had more comorbidities, or were diagnosed later in the disease course than trials considered people eligible [30].

Women who are pregnant or lactating have also traditionally been excluded from participation in clinical trials, so there are fewer longitudinal data available on peripartum patients across DMTs. There are also limited data on the experiences and guidelines for care of transgender patients with MS [31].

Practice Tips: Utilize guidelines for evaluating all new patients and consider standardized evaluations (in terms of history‐taking, laboratory testing, and imaging studies) and clinical trial participation for all patients, regardless of race. Common cognitive biases—including anchoring, confirmation bias, framing bias, and premature closure—can be mitigated by physician education (to understand the prevalence of disease for availability bias, for example), using objective guidelines and checklists (to avoid confirmation bias), being open to different perspectives (avoiding framing and anchoring), and seeking other viewpoints and pursuing testing (to avoid premature closure) [32]. After starting with comprehensive testing and evaluation, it can then be tailored for individual patients to limit potential missed diagnoses and delays to care. Transparent discussions of risks and benefits to research should be provided to all participants.

4. Case 3

A 34‐year‐old female architect with MS presents to your clinic. She has experienced relapses on high‐efficacy DMTs. She wants to discuss enrolling in a clinical trial of stem cell therapy.

This situation for MS specialists is not uncommon given the lack of curative options for people with MS. There is usually information asymmetry between physicians and patients, where the physician in most cases will have more knowledge of the diagnostic and treatment steps and strategies, as well as a better understanding of physiology, drug mechanisms, research, trial data, and logistics of research enrollments that each could help to inform clinical care decisions. At the same time, the patient will always have a better understanding of her body and her experience of the disease, her experience of treatments, and her capabilities in terms of accomplishing medication adherence, also encompassing lifestyle and socioeconomic factors. When discussing experimental therapies with rare but potentially fatal or life‐threatening consequences, it can be difficult to share the risks of safety concerns that could range from no symptoms to death. These risks may be known or unknown and indeed unknowable at the time of enrollment in an early phase trial. Similar treatment approaches include phase I trials for chimeric antigen T‐cell receptor therapy, for which multiple products exist with differing inclusion and exclusion criteria such as age limits, chemo‐induction regimens, follow‐up plans, and hospitalization durations.

While there are guidelines for the monitoring and safe use of DMTs, including testing for pre‐existing infections, vaccination strategies, and surveillance measures, the risks of possibly more effective but still experimental therapies, including longer term future considerations should be discussed. This places a significant burden on patients, especially those who may not have a complete understanding of some of the potential safety considerations, their statistical likelihoods, or their consequences. Unlike in Case 1 where the evidence base for the therapy is strong, case 3 demonstrates the challenges of practicing without an appropriate evidence base on therapies in MS that are “high risk, high reward.” Similarly, experimental therapies may take years to have adequate data while windows for aggressive treatments tend to work better when they are delivered earlier, in younger patients, and before disability and risks from comorbidities accrue. Importantly, patients' goals for entering into an early phase or experimental therapeutic trial (e.g., for a cure, disease arrest, or any form of improvement from MS treatment) may differ from early phase trials' goals which focus on safety, dosing, and toxicity in humans. This therapeutic misconception is important for neurologists to explain in real terms to their MS patients. Many experimental therapeutic options in MS have subsequently been shown to be harmful or without therapeutic benefit, or both [33, 34]. Others have shown to have excess intolerability, too limited efficacy compared to extant options, or rare but life‐threatening adverse events, leading to discontinuation of product development or removal from the public market. Taken together, rational decision makers may differ on risk taking, intuition, and ranking of priorities. The principle of autonomy underscores that a single moral narrative cannot determine whether a patient with an incurable disease should try a potentially curative early phase trial.

In clinical decision‐making, care ethics can guide neurologists by emphasizing the importance of time to allow all involved parties (the patient, the neurologist, the patient's support system) to share their views and come to a decision together, even as time in the clinical setting is sometimes difficult to find for such complex conversations.

Practice Tips: When experimental approaches to MS treatment are queried by patients, it is reasonable to share what is known and what is not known with the patient. Share details on the aims of existing studies, for example, using clinicaltrials.gov, and explain the goals of early phase trials to avoid “the therapeutic misconception.” Ensure such studies are recruiting, that your patient meets broad eligibility criteria before she pursues long duration travel, and hold separate visits to pursue counseling on the therapeutic options when patients are serious about taking this course of action. It is reasonable to refer patients to the actual study websites, other centers where high‐quality experimental trials are ongoing, or encourage them to seek second opinions so they can fully explore such research options when needed. Partner with your patient to ensure you are vetting information as it is received and update your patient when new results come out that change the risk–benefit ratio for that approach.

5. Case 4

A 43‐year‐old man with a history of relapsing remitting multiple sclerosis (RRMS) who is currently taking fingolimod shares with you that he is newly experiencing housing instability. He receives his medications through mail to his former house through a low‐cost medication payment program and is unsure how to proceed with DMT receipt now that he does not have a reliable address.

The principle of justice requires that structural barriers in health systems are removed to allow equitable access to treatment in MS across the social determinants of health. However, health systems often fail in this need for just systems. The inverse care law states that the availability of good medical care tends to vary inversely with the need for it in the population served [35]. Not specifically focused on MS and first described in 1971 in the United Kingdom, the inverse care law “operates more completely where medical care is most exposed to market forces, and less so where such exposure is reduced.”

Several structural barriers in the United States health system either do not rectify or indeed exacerbate unequal access to MS care. In the United States, most DMTs that patients self‐administer are provided through specialty or mail‐order type of pharmacies that provide medications directly to patients at a specified home address. In some cases, the DMT is stable at room temperature and in others, it is perishable or should not be left in either extremely hot or cold ambient temperatures. Patient assistance programs to receive cost coverage for DMTs can be complex and intense, requiring form‐filling, proof of low income, multiple phone calls, and other requirements on a recurring basis. While such steps may be necessary for due diligence for patient assistance programs, some patients with MS do not have the cognitive capacity, visual capacity, computer literacy, educational level, or general access to the basic resources needed to complete the required steps. Similar requirements may occur for patient transportation needs to attend MS clinic or treatment‐based visits, requiring proof of residence in a particular location. Many MS practices do not have social services available to MS patients. While tele‐neurology and patient navigator programs can be beneficial at expanding access, they are often insufficient for patients especially when a thorough neurological exam is necessary, and there are similar structural disparities in access to teleneurology [36]. Moreover, coverage of teleneurology services can be interrupted or discontinued with limited warning to patients. Patients' autonomy when they are unhoused may be limited by their inability to meet certain standard requirements, for example, sending a mailed‐out DMT to a friend or family member may disclose the diagnosis of MS to someone whom the person with MS would have otherwise not shared the diagnosis with. Virtue ethics implores healthcare providers to act in their patients' best interest, whether that involves establishing increased clinic resources for patients or becoming involved in political action to improve social services, thereby facilitating access to care.

Nonmaleficence in MS includes the goal that unhoused patients are not harmed through routine logistics in MS care. It also includes the concept that the set, required income level for MS patients to receive free drug not be so exceedingly low that people with MS cannot seek any income for their livelihoods, in order to remain eligible for free drugs. People who are unhoused also have a disproportionate burden of mental illness that may lead to their inability to get routine MS care and housing instability [37]. A capabilities approach maintains that all people should have the opportunity for well‐being and certain specific freedoms including health. Addressing financial strain, employability, comorbid illnesses, housing status, risk of domestic abuse and violence, and computer access are outside of the typical clinical visit but may all be relevant to the comprehensive care of an MS patient. In some cases, MS foundations have taken on specific social determinants of health, such as computer access, as part of their missions [38].

Justice toward people with MS suggests that unhoused patients must have at least the same access to high‐quality care and DMTs as those who are well‐housed. Health systems often struggle to deliver on this goal and may in fact accommodate patients in makeshift ways, relying often on emergency departments, urgent care, and other acute care settings [39, 40]. However, these safety net processes in care are non‐ideal and suggest people with MS who are not in longitudinal clinical care have the risk of doing worse from a disease‐based perspective if attempts are reactionary to problems rather than forethought to achieve a more equitable system.

Another consideration is the burden placed on patients with MS in the setting of fragmentation of care—from the required sacrifices in their personal life, occupation, and family obligations—to be able to take time off to get to treatment centers, to the required necessary appointments for vaccinations prior to initiating certain DMTs, and to the burden on patients—for example, in rural areas—to travel to MS care. There are specific parts of the country and world that are deemed “neurologist deserts” and even more specifically, “neuroimmunologist or MS‐specialist deserts” [41]. In a more just world, there would be MS specialists and infusion centers within a certain distance of all patients. Patients should not have to spend hours advocating for the standard of care to be covered by their health insurance.

Another common burden to accessing physician‐recommended care is step therapy. Step therapy is a policy where patients must try a less expensive treatment prior to being approved by a health insurance plan for more expensive treatments [42, 43]. While this may reduce cost, many step therapy protocols are not in line with clinical guidelines [44]. Step therapy can be directly at odds with the standard of care—and in conflict with the principles of virtue ethics and beneficence—especially if it leads to delays in getting on the appropriate DMT, results in increased disease activity while on less effective therapy, has less available safety data in special circumstances or in general, and/or causes potentially harmful adverse effects.

In general, health systems should strive to meet the needs of the most disadvantaged patients with MS, extending outreach and services to the most needy and disenfranchised. However, specific services for underserved people with MS need more discussion, monitoring, evaluation, and sponsorship.

Practice Tips: The neurologist can serve as an essential resource in health systems, linking patients with programs such as free laptops, free DMTs, and patient navigator programs. However, free services change over time and may not suit the needs of all patients, such as those who are unhoused. Questioning patients on their day‐to‐day lives, including their social determinants of health, can reveal issues that are not solved by extant programs. DMT choice should consider patient needs in the context of any social determinants of health, such as self‐administration versus facility administration, mail‐out DMTs versus pharmacy pick‐up, long‐acting induction therapies versus portable medications, and other factors. Where health systems fail to meet the needs of patients, partnering with patient‐based advocacy groups and highlighting systems issues to government and patient support programs can identify missed opportunities and systemic biases in MS care provision.

6. Conclusion

The field of MS is changing from both a diagnosis and treatment perspective. Diagnosis early in the disease course and early treatment with efficacious, tolerable, and overall safe DMTs are both now possible. Ethical dilemmas remain in the individuated MS patient context, as they have for many years, but are now evolving with available treatments and health systems. We illustrate just a few of the more common clinical scenarios an MS neurologist or similar practitioner may face and attempt to provide ethical comments on how these situations have ethical dilemmas and can be approached. Many of these ethical dilemmas can be generalized to other neurological conditions or chronic diseases: for example, the decision to start treatment before patients have symptoms, navigating differing opinions between the patient and physician on treatment decisions, combating health misinformation, or using off‐label treatments and untested supplements. Similar, systemic inequities related to access to care and representation in clinical trials can also be applied more broadly to other diseases.

Scientific advances in MS—which are rapid—require both accurate communication and community, health care worker, and patient‐level education. However ethical dilemmas are not all due to—and cannot all be solved by—communication alone. There remain fundamental differences in the way people see the evolving nature of MS science, discovery, research, and clinical care. In some cases, further research in MS, a diversity of educated and responsive health care professionals, and better stakeholder investments in MS care can reduce ethical dilemmas. In others, applying ethical lenses may be the only available way to allow both neurologists and patients to adjudicate their situations, choosing the best possible path given the available evidence at the present time.

Author Contributions

Methma Udawatta and Farrah J. Mateen contributed to the conception and design of the study, acquisition of data, drafting the text, editing the text, and preparing the tables and figure.

Funding

The authors have nothing to report.

Conflicts of Interest

The authors declare no conflicts of interest.

Data Availability Statement

The authors have nothing to report.