Exploring Ethical Dimensions in Neuropalliative Care

Abstract

Neurologic illnesses can be challenging to diagnose, involve changes in consciousness, and are often complicated by prognostic uncertainty. These disorders can affect how individuals interact with their environment, and as a result, many ethical concerns may arise related to their medical care. Key ethical issues in neuropalliative care include shared decision-making, evolving autonomy and capacity, best interest and harm principles, beneficence and nonmaleficence, futile and inappropriate care, justice and equity, and ableism. The four core principles of medical ethics, beneficence, nonmaleficence, justice, and autonomy, are foundational in considering approaches to these ethical challenges. Shared decision-making is rooted in the principle of autonomy. Evolving autonomy and capacity evoke autonomy, beneficence, and nonmaleficence. The best interest and harm principles are rooted in beneficence and nonmaleficence. Questions of futility and inappropriate care are founded in the principles of nonmaleficence, autonomy, and justice. Ableism invokes questions of nonmaleficence, autonomy, and justice. Practitioners of neurology will encounter ethical challenges in their practice. Framing decisions around the core ethical principles of beneficence, nonmaleficence, autonomy, and justice will help clinicians navigate challenging situations while acknowledging and respecting each patient's individual story.

Keywords

neuropalliative care - palliative care - bioethics - decision making - health equity

Introduction: Ethics and Neurologic Illnesses

All that we are is the result of what we have thought. The mind is everything. What we think, we become.—The Dhammapada

The mind and the soul are often considered to be central to life itself. Disorders of the brain and nerves, which can impact the ability of the individual to interact with the world, can elicit questions of personhood, the meaning of life, and morality. Neurologic illnesses often are challenging to diagnose, involve changes in consciousness, and are complicated by prognostic uncertainty. As a result, there are many ethical concerns that arise in the care of patients with neurologic disorders.

Medical ethics refers to the application and interpretation of morality to the care of patients. While morality can have variability in different social, historical, religious, and cultural contexts, the field of medical ethics endeavors to work within the structure of common morality (e.g., “not to kill, or harm, or cause suffering to others, not to steal, not to punish the innocent, to be truthful, to obey the law, to nurture the young and dependent, to help the suffering, and rescue those in danger”).[1] Clinicians and researchers have the ethical obligation to provide appropriate and trustworthy care to their patients in keeping with common morality.

Core Principles of Medical Ethics

Core principles of medical ethics that would be endorsed by most codes of morality include beneficence, nonmaleficence, autonomy, and justice.[1] [2] These principles are also foundational in the approach to ethical questions in neuropalliative care, a field dedicated to supporting the quality of life and decision-making of patients with serious illnesses from neurologic disorders.

Beneficence and nonmaleficence, rooted in the Hippocratic Oath, refer to the obligation of the clinician to promote the well-being of patients. Beneficence is the responsibility to actively protect those in danger, improve health, and minimize suffering.[1] Nonmaleficence, or “do no harm,” obliges clinicians to weigh the benefits and burdens of treatments to not cause harm or injury.[1] The principle of autonomy is founded in the belief that all persons have intrinsic worth and, for those who have the ability, have the right to make decisions about their life and body.[1] To promote autonomy, clinicians have the responsibility to obtain informed consent prior to proceeding with diagnostics or therapeutics, to tell patients the truth, and to respect patient confidentiality. Autonomy may be limited in cases when a person lacks the capacity to make a given decision or when a decision may harm another person. Justice is the responsibility to provide fair, equitable care with appropriate distribution of resources.[1] The principle of justice obliges health systems to consider the greater social context when making decisions about who receives care. There are situations where one principle may conflict with another, begging the question of which principle should take priority. In such situations, the clinician must weigh decision-making based on the patient's specific needs and values.

Key Ethical Topics in Neuropalliative Care

In this review, we will explore issues of decision-making for individuals who currently have or previously had decision-making capacity, and for those who never had the capacity to make decisions for themselves (i.e., children). We will examine ideas around futility, inappropriate care, and health equity. Finally, we will discuss the concerns of ableism, or a prioritizing of physical and cognitive abilities when assigning value to individuals[3] ([Table 1]).

Table 1 Key ethical topics in neuropalliative care

Ethical topic	Brief description	Relevant core principles of medical ethics
Shared decision-making	A process by which clinicians present a patient with the best possible evidence, support the patient in considering their options based on the patient's values, and collaborate in choosing a treatment plan	Autonomy
Evolving autonomy and capacity	Decision-making capacity to consent to treatments is limited in childhood and typically increases into adulthood. Capacity may diminish with neurologic injury or disease progression. In this evolution, it may be possible to make some less complex decisions while requiring support from others with more complex decisions	Autonomy Beneficence Nonmaleficence
Best interest and harm principles	When making decisions for a never-competent individual, surrogates rely upon what they believe will promote the individual's well-being and avoid serious risks of imminent harm	Beneficence Nonmaleficence
Beneficence and nonmaleficence	Tracing back to the time of Hippocrates, the clinician's mandate to help and to do no harm	Beneficence Nonmaleficence
Futile and inappropriate care	These concepts apply to care that is likely to provide more harm than good. Futile care refers to interventions that cannot accomplish the physiologic goal. Inappropriate care is more general and refers to interventions that may be harmful or nonbeneficial	Nonmaleficence Autonomy Justice
Justice and equity	Clinicians bear a responsibility to strive to reduce long-standing and systemic differences in quality of care by racial, gender, or other individual characteristics	Justice
Ableism	Injustices can be perpetuated based on perception of quality of life for people with different cognitive or physical abilities	Nonmaleficence Autonomy Justice

The concept of shared decision-making is grounded in a respect for autonomous decision-making.[4] As a person's ability to be autonomous evolves, decision-making shifts, either increasing or decreasing depending on the individual's cognitive capabilities.[5] Even if unable to make decisions independently, individuals still deserve some control over their lives. In situations of evolving autonomy, care is centered on substituted judgment, an attempt to apply what is known about the previously competent individual's wishes and goals to current decisions. This facilitates ongoing respect for their autonomous wishes.[5] However, for individuals who have never been competent to make their own decisions (e.g., children and individuals with developmental disabilities), decision-making is grounded in the principles of beneficence and nonmaleficence. In these situations, decisions should be based on a person's best interest and avoidance of significant harm.[6]

The concepts of futility and inappropriate care are grounded in concerns about care that may be more harmful than beneficial and may divert precious healthcare resources to patients with limited or no possibility of benefit.[7] Thus, futility and inappropriate care also raise questions about justice. Striving to improve health equity is also centered around the principle of justice. The concept of equity acknowledges and strives to reduce long-standing and systemic differences in quality of care by racial, gender, or other individual characteristics. Finally, ableism acknowledges how our biases about having particular cognitive or physical abilities can lead to differential perceptions of the value of a person's life and can result in the perpetuation of injustices.[8]

We will use clinical cases of adults and children with neurologic disease as a foundation for discussions about the key ethical topics in neuropalliative care. We highlight several nuances in the interpretation of these ethical principles when they may be in cooperation or conflict with one another in the context of caring for patients with neurologic illness. The cases we use to guide the discussion are fictional but inspired by patients we have met in our practice. Similarities to real patients are only coincidental.

Shared Decision-Making

Case: Ms. Ortega is a 34-year-old teacher who has a history of glioblastoma who now has progression of disease. Her oncologist has shared with her that she is likely to die from this cancer, but participation in a clinical trial could slow progression of disease.

Case: Joey is a 6-month-old with a genetic form of epilepsy. He is in his second hospitalization for respiratory failure due to seizure exacerbations. His parents are wondering what the future will hold and whether to focus on time at home.

The modern medical community places a high value on patient autonomy—the ability of an individual to make choices in accordance with their personal values free of outside influence or pressure.[9] For parents who are making decisions for their child, there is a broad respect, with limits, for their ability to authorize treatment on their child's behalf consistent with the family's values and goals.[10]

Medical decision-making falls along a spectrum with truly autonomous decisions at one end and clinician-directed decisions at the other.[11] [12] With truly autonomous decisions, a patient typically chooses from a range of treatment options based on their own values. In other situations, (1) clinicians can make recommendations based on their understanding of a patient's values with the goal of helping to guide the patient's choices; (2) clinicians and a patient can come to a joint decision in a partnership (termed shared decision-making); or (3) clinicians can determine the best course of action and give the patient the opportunity to remain silent or veto the decision (termed “informed nondissent”).

Shared decision-making is a process by which clinicians present patients with the best possible evidence, support patients in considering their options, and guide patients in making informed decisions. Shared decision-making represents a form of patient-centered care that supports patient autonomy and self-determination without abandoning the patient.[11] [12] It assumes a partnership between the clinician, who holds expertise in health and medicine, and the patient, who holds expertise in their body and value system.

In neurologic illness, shared decision-making is both valuable and challenging. In situations where treatments may offer unclear benefits with unknown burdens, the most ethical approach to decision-making may be to allow patients autonomy in applying their value system. In Ms. Ortega's case, decision-making is complicated because there are no clear standard treatment options. Since she cannot be expected to know the intricacies of the medical therapies and pathologies, shared decision-making requires her oncologist to educate her on anticipated benefits and burdens, alternative options, and uncertainty. Then, based on the balance of her priorities for extension of life, tolerance of potential time in the hospital, and anticipated side effects, clinicians can help guide her to a decision.

When prognosis is uncertain, clinicians must offer anticipatory guidance about the future, including functional status and survival time, in the context of a patient's values. Joey's family is expressing uncertainty about the relative benefits and burdens of continued aggressive care for a progressive neurologic disorder. At times, families may turn to their trusted clinician and ask, “what would you do?” Clinicians should ensure they have provided clear information about potential paths forward using a technique that provides predictions around the “best case,” “worst case,” and “most likely” scenarios.[13] Then, they can elicit from families what would be their worries or hopes for each of these scenarios. This approach allows clinicians to make a recommendation grounded in a deeper understanding of the patient and family's values. Importantly, effective shared decision-making relies on active listening and effective communication skills.

Evolving Autonomy and Capacity

Case: Sandy is a 14-year-old with a history of leukemia in remission after arduous chemotherapy. She presented with lower extremity weakness and was found to have a new spinal mass concerning for recurrence of her leukemia as a chloroma. She expresses hesitance about undergoing further treatment for her cancer.

Case: Mrs. Alberto is a 75-year-old retired professor. Her partner encouraged her to seek care due to worsening forgetfulness and she was diagnosed with Alzheimer's dementia. She has always valued her independence and decisiveness but is becoming more confused about the details of her care and daily routine.

In diagnosing and treating neurologic conditions, clinicians must assess the decision-making capacity of their patients; this is the basis for informed consent. A patient who has decision-making capacity can demonstrate understanding of their situation, describe the consequences of their decision and their thought process, and communicate their wishes.[14]

Confirming a patient's capacity ensures that medical decisions are made respecting the ethical tenets of autonomy and nonmaleficence. For patients with neurologic disease, decision-making capacity can be fluid and requires close assessment and reassessment. A patient may not have the capacity to make a decision with life-altering consequences but may be able to make less complex decisions or appoint a surrogate decision-maker.[14]

Minors are typically not deemed to have legal medical decision-making authority despite some exceptions for largely public health purposes. Science around neurodevelopment supports these limits to their capacity to make life-altering medical decisions without parental agreement due to challenges that adolescents have anticipating the long-term consequences of their decisions.[15] A parent or guardian will typically serve as a minor's decision-maker and provide informed permission on their behalf. The extent to whether and how children are involved in decision-making about their care evolves with age. Since we strive to respect all patients as individuals, it is ethically appropriate and good clinical practice to inform children about medical treatments and, in some circumstances, seek assent prior to providing or withholding treatment. The assent process requires that clinicians explore their patient's preferences and endeavor to partner with the child themselves.

These conversations can vary in complexity, acknowledging that older children and adolescents are developing decision-making capacity as they mature. For example, while Sandy is technically a minor, she can express opinions about her treatment course with greater context due to her lived experience. She would likely benefit more from increased involvement in her medical decision-making than a younger or less experienced child. In instances where adolescents refuse life-saving treatment over their parents' request for that treatment, clinicians frequently side with the parents and work to provide these treatments even against a teen's refusal. In such circumstances, it may cause more harm than benefit to offer a minor the opportunity to assent if their refusal would not be honored.[16]

Adults who were previously independent may experience changes in decision-making capacity related to neurologic illness, including cognitive or motor impairments, or difficulty with mental processes like executive function or memory. Mrs. Alberto's case demonstrates this transition. While she may have the capacity to make medical decisions for herself at this time, she is likely to lose this ability as her illness progresses.

With changing decision-making capacity, medical decisions should still be centered around the patient's wishes. A surrogate decision-maker, such as Mrs. Alberto's partner, can serve as a representative of a patient who is unable or unwilling to make medical decisions on their own.[14] Surrogate decision-makers are asked to use substituted judgment; their role is to make decisions as the patient would if they were able to make decisions on their own.

Just as shared decision-making exists on a spectrum, surrogate decision-making can vary in how much decision-making the patient versus surrogate are responsible for via a framework of supported decision-making. Supported decision-making seeks to facilitate the self-determination of patients with impaired (or immature) decision-making by encouraging their surrogates to guide them in this process.[5] This framework can be particularly helpful at maintaining the autonomy of patients with evolving capacity. With children and adolescents, this may look like parents/guardians offering choice in low-stakes decisions (e.g., which arm to use for a blood pressure check), eliciting patient preference in moderate-stakes decisions (e.g., what time of day to participate in therapies), and offering little room for negotiation in high-stakes decisions (e.g., life-sustaining therapies). Adults with progressive neurologic decline or cognitive impairment may request an individual who can provide supported decision-making, a trusted person to assist with treatment-related decision-making. This support person can transition into the role of surrogate decision-maker at the time the patient is less able to participate in decision-making.

Naming a surrogate medical decision-maker can be one way to promote patient autonomy in the setting of evolving capacity. Another effective tool is an advance directive, which is a document where a competent adult can express their values and wishes around medical care at the end of life in advance. While the legal implications of advance directives can vary by state, they can serve as excellent resources for surrogate medical decision-makers.[17] One challenge of advance directives that are more proscriptive in nature is that it can be difficult to predict all possible future medical circumstances. Mrs. Alberto may create an advance directive to express her wishes while she retains capacity. Similarly, Sandy may express her hopes via a “Five Wishes” document, which can help her parents to incorporate her perspective when they are making decisions on her behalf.

Best Interest and Harm Principles

Case: Penelope is a 3-year-old unvaccinated child who presented to the hospital with seizures and fever. She underwent lumbar puncture and was found to have meningitis. Her parents are refusing antibiotics, stating that they would prefer to use healing herbs to treat her illness.

Case: Mrs. Brown is a 27-year-old with sickle cell disease. She presented to the emergency department with confusion, facial droop, and drooling. Her surrogate medical decision-maker, her husband, presents an advance directive refusing transfusion of any blood products due to her religious beliefs as a Jehovah's Witness.

Surrogate decision-makers have legal authority to make decisions on a patient's behalf, provided they are making decisions in the patient's best interest and are not acting in any way to cause harm.

In the case of Mrs. Brown, conflict may arise between her previously stated autonomous wishes and her medical team's perception of what is in her best interest now. In these types of conflicts, Mrs. Brown has a constitutional right to express her religious beliefs and has the right to refuse medical therapies for herself that are not aligned with her belief system.[18] As the decision to refuse transfusion would not cause any direct harm to another person, her medical team should respect her husband's decision to refuse transfusions on her behalf since it respects her autonomous wishes.

However, these same protections do not extend to children and other innocent third parties. The U.S. Supreme Court has stated “Parents may be free to become martyrs themselves. But it does not follow they are free, in identical circumstances, to make martyrs of their children before they have reached the age of full and legal discretion when they can make that choice for themselves.”[19]

In Penelope's case, she is due special protection as she is not yet able to express her own future wishes. A child's parent/guardian has the legal right to consent to or refuse treatment on their behalf. However, as medical decision-makers, parents/guardians are obligated to make medical decisions with the best interest of the child in mind.[6] When their decisions put their child at an imminent risk of serious harm, the rights of parents/guardians can be limited. Clinicians cannot usually override a surrogate decision-maker's decision unless the patient's life is at risk or they are at risk for significant suffering if an intervention were delayed. Penelope's parents' authority to refuse therapy may be challenged because delayed administration of antibiotics is likely to result in severe neurologic injury or death. Importantly, the risk of harm in this case is both highly likely and serious. Furthermore, her infection is likely to progress quickly indicating imminent risk of harm, and antibiotics are likely to be an efficacious therapy and are the clear standard of care. Should the clinician choose to oppose the family's decisions, they would work through a state agency such as child protection services or the hospital to obtain a court order to provide care. In these cases, a hospital ethics committee or legal counsel can serve as a resource for clinicians.[6]

It is important to maintain a therapeutic relationship with patients and their families. Whenever possible, clinicians should attempt to align with a patient's interests to facilitate medical decision-making. Even when they can't support a particular decision, teams can support families in all other ways and keep them involved in the care of their child.

Beneficence and Nonmaleficence

Case: Mrs. Katz is a 76-year-old with advanced Parkinson's dementia. Despite many years of therapy, her illness is such that she is now bedbound with painful wounds, unable to communicate, and spends most of her day sleeping. She has not been eating or drinking, just moaning in pain. Her family asks her hospice team to help manage her pain.

Case: Mr. Keller is a 52-year-old plumber who was diagnosed with amyotrophic lateral sclerosis after having trouble completing tasks at work due to muscle cramps. He is an only child, never married, and cares for his aging parents. He asks if you can help “end it all” when he is no longer able to care for himself.

Clinicians caring for patients with neurologic conditions, particularly those that are life-limiting, must recognize the concepts of beneficence and nonmaleficence. Beneficence is the responsibility to actively work to minimize suffering for patients and communities. This obligation to care for others is not only rooted in the altruistic nature of the medical profession but also represents the social contract between clinicians and the society.[1] Nonmaleficence represents the responsibility of clinicians to weigh the benefits and burdens of their interventions and to avoid undue harm to patients.

There may be instances where there is a tension between beneficence and nonmaleficence. Mrs. Katz's late-stage illness means she is likely close to death and her family is requesting more aggressive management of her pain. Is it ethical for her hospice team to rapidly escalate dosing of opioids to manage her pain even if respiratory suppression may occur as an opioid side effect? In this case, beneficence (the obligation to treat and minimize suffering) is in direct conflict with nonmaleficence (the obligation to avoid therapies with detrimental side effects). In American society, it is generally accepted that the principle of “double effect” allows for ethical management of symptoms at the end of life.[20] That is, if the intention of using therapies at the end of life is to treat suffering, detrimental side effects such as respiratory suppression can be acceptable, as long as the dose escalation is paused once her symptoms are adequately managed.

Mr. Keller's request is more controversial because he is requesting medical aid in dying (MAID). In several U.S. states and many countries worldwide, competent adults with a limited life expectancy due to terminal illness can request a lethal dose of medication from their physician.[21] [22] In the United States, patients must be able to self-administer the medications; however, specific requirements vary by country/state ([Table 2]). A patient's desire to end one's life when anticipating or experiencing intolerable symptoms due to life-limiting illness is fundamentally different than using medications to alleviate pain that have the potential to accelerate death; in MAID, the intent is to end suffering by hastening death. While some scholars argue that robust palliative care can alleviate symptoms so effectively that MAID becomes unnecessary,[23] others argue that patients can experience such severe suffering from their illness that forcing them to continue living is contrary to the principle of nonmaleficence.[24] It is important to understand the legal requirements of each state's MAID laws and follow all institutional guidelines if prescribing medication with the intention of aiding a patient's death.

Table 2 Medical aid in dying

Common terms[40]
Medical aid in dying (MAID)	A general term that encompasses all forms of clinician-assisted dying
Euthanasia	The intentional ending of a person's life other than their own, typically by administering medications to them
Physician-assisted suicide	A physician provides medication at a competent adult's request for them to self-administer with the goal of ending their life
MAID requirements in representative countries
United States[40]	• Adult resident of a state with Death with Dignity laws  • Have healthcare decision-making capacity  • Have a terminal illness with <6-mo prognosis  • Capable of self-administering medication
Canada[41]	• Adult who is eligible for healthcare services in Canada  • Have healthcare decision-making capacity  • Have a “grievous and irremediable medical condition”  • Request signed by an independent person  • Healthcare provider can order OR administer medication (no need to self-administer)
Switzerland[42]	• Adults who have decision-making capacity  • Assistance must be “altruistic, not selfish”  • Capable of self-administering medication  • Can be performed by physicians or nonphysicians

Futile and Inappropriate Care

Case: Jeremiah is a 10-year-old boy who has sustained a devastating traumatic brain injury. He is not a candidate for surgical intervention given refractory intracranial hypertension. Forty-eight hours after his injury, despite maximal medical therapy, computed tomography of brain shows complete tonsillar herniation. His medical team thinks that he would meet criteria for death by neurologic criteria (DNC) or brain death. His family refuses to allow the medical team to pursue the evaluation due to a religious belief that life exists as long as the heart is beating. The team is reluctant to offer tracheostomy or gastrostomy tube placement because they believe it is inappropriate care.

Case: Mr. Simpson is a 62-year-old who suffered intracranial hemorrhage from a cerebral aneurysm. He is in a minimally conscious state and will occasionally smile when his daughter plays the cello for him. He requires mechanical ventilation and lives in a facility. He has been admitted to the hospital several times for pneumonia and his medical team worries that further care is futile.

Patients with disorders of consciousness and/or life-limiting conditions often evoke questions of futility and inappropriate care. These concepts are distinct:

• Futility: “the complete absence of any efficacy in reaching any physiologic goal.”[25]

• Inappropriate care: when there is “no reasonable expectation that the patient will improve sufficiently to survive outside the acute care setting, or when there is no reasonable expectation that the patient's neurologic function will improve sufficiently to allow the patient to perceive the benefits of treatment”[7]

Futility is grounded in the ethical principle of nonmaleficence in that clinicians should not be providing care that is more likely to cause harm than benefit. The principle of justice is also relevant; clinicians have the responsibility to use resources in a fair and equitable way to the benefit of society. Patients like Jeremiah may be perceived not to benefit from ongoing treatments. In these situations, a patient or surrogate's request for ongoing treatment, an expression of their autonomy, comes into direct conflict with the clinicians' perception that care is primarily causing harm. An extreme example of medical care that could be called futile is providing cardiopulmonary resuscitation to a patient who has been without pulses for >1 hour. Many discussions of “futility,” such as in Mr. Simpson's case, are more subtle and apply a value judgment when assessing whether care is futile. Physiologically speaking, because the healthcare system has access to antibiotics that will kill bacteria that are causing his pneumonia, such treatment, even if it requires hospital admission, is not physiologically “futile.” In Jeremiah's case for example, if extension of life, regardless of the patient's ability to perceive or interact with their environment were the goal, then continued treatments are not futile. Many institutions have processes for assessing whether certain medical treatments should or should not be offered to patients who have a low likelihood to live outside the intensive care unit (ICU) and justify these decisions based on a justice framework.[7]

Jeremiah's case also raises questions of inappropriate care due to his family's refusal to allow evaluation for DNC.[26] This case is particularly challenging due to currently accepted legal definitions of death and how they may conflict with a patient's belief systems.[27] In most states, consent is not required to evaluate a patient for DNC.[28] However, there have been lawsuits related to familial refusal of these exams due to personal or religious objections,[29] demonstrating the supremacy of a respect for autonomy over a value for allocation of scarce resources in the ICU. After DNC has been determined, a patient is legally dead in most U.S. states. Therefore, it is advisable to address parental or surrogate concerns surrounding DNC prior to declaring death.

To the contrary, patients with disorders of consciousness (e.g., minimally conscious or vegetative states) do not meet DNC criteria, and clinicians remain obligated to partner with surrogate decision-makers to provide goal-concordant care. Providing goal-concordant care, however, does not oblige clinicians to provide any and all demanded interventions if they are not feasible or indicated. As an example, Jeremiah's parents cannot demand a neurosurgical procedure for his injury that multiple surgeons have deemed “inoperable.”

In considering the principle of justice and its application to inappropriate care, clinicians may question utilization of resources that could be directed to other patients. Particularly in resource-limited settings when the goal may be to allocate scarce resources to patients who are most likely to benefit, clinicians may consider withdrawing or withholding therapies when the medical team does not believe them to be of value to the patient. While we are supportive of clinicians providing high-value care and recognize that there may be moments of scarcity in which triaging of resources is necessary to maintain societal health, we generally recommend that care be matched to a patient's values without direct consideration of cost. Doing so may not be feasible in resource-limited settings.

Justice and Equity

Case: Jordan is a 12-year-old Black boy who suffered a severe traumatic brain injury when he was hit by a stray bullet in a drive-by shooting. He and his friends were playing basketball in the street because their neighborhood, which has not received local funding for development related to historical redline policies,[30] does not have spaces for safe play. His mother works two jobs to support Jordan and his sister and is not able to spend time at the bedside. Jordan's care team avoids updating his mom via phone because she “doesn't seem to care.”

Case: Mrs. García is a 50-year-old Spanish language-preferred woman with multiple sclerosis. She is admitted to the hospital with pressure sores and weight loss from decreased mobility. She has been unable to work, has struggled to support her family financially, and has skipped physical therapy and meals to ensure that her family has enough to eat.

Neuropalliative care practitioners must consider the principles of justice and equity in caring for their patients. These principles become especially relevant when considering access to appropriately timed diagnostics, clinics for chronic illness, emergency care, therapies, rehabilitation, and home care services.

Many factors can contribute to health disparities. Health outcomes can be impacted by the ability of patients to access medical therapies.[31] Patients who are unable to afford or store their medications may experience more complications and more rapid progression of their illnesses. Patients like Mrs. García may experience more rapid progression of disease due to difficulty meeting basic needs. She may also experience worse outcomes related to inadequate access to interpreter services or institutional barriers to organizational health literacy, the degree to which organizations equitably enable individuals to fully understand and have access the medical information they need.[32] Patients may also have worsened health outcomes related to inequitable access to novel diagnostics and therapeutics; innovators should consider health equity in their design process.

Furthermore, we must consider how groups may be marginalized due to language barriers. Patients who speak languages other than English may be less likely to trust their healthcare system, understand their provider teams, communicate their needs and symptoms, and participate in therapies.[33] [34] Systems built on cultural humility may help improve access and outcomes.

Justice and equity should dictate how our healthcare structure treats marginalized groups.[35] Racism is inherent in our society and healthcare system and its effects can be seen on structural, institutional, interpersonal, and personal levels.[36] Structural racism may manifest in less access to quality healthcare that puts some people at higher risk for traumatic brain injury, for example. Healthcare systems that have discriminatory policies that present barriers to care (e.g., need for insurance) or make it more difficult for clinicians who identify as Black, Indigenous, or People of Color to gain faculty positions are examples of institutional racism. Interpersonal racism impacts clinician treatment recommendations due to implicit bias and makes it harder for patients to trust the healthcare team. Personal racism describes deeply internalized beliefs a person may develop about themselves from years of experiencing racism; this can contribute to chronic stress and act as a barrier to seeking care.

In Jordan's case, structural racism likely increased his risk for injury. People living in neighborhoods affected by historical redlining are more likely to be affected by firearm violence, chronic illness, and limited access to healthcare.[37] Because of the built environment, he had fewer options for safe play compared with another child living in a more affluent neighborhood. His neighbors may have decreased access to emergency care related to inadequate emergency response or overwhelmed hospital systems. Beyond emergency care, patients in these situations may be less likely to have access to primary or subspecialty care for diagnosis and follow-up. It may also be more difficult for patients to receive curative, rehabilitative, or comfort-focused therapies. This results in patients like Jordan being at risk for worse neurologic outcomes that negatively impact their quality of life. Institutional and interpersonal racism may also have an impact on Jordan's care as his care team is not communicating effectively with his mother and, consequently, she is unlikely involved in shared decision-making. Due to deeply internalized personal racism, Jordan's mother may feel less empowered to request stronger communication from the medical team.

Given the uncertain trajectories of neurologic illness and difficulty in predicting neurologic recovery after trauma, good communication and trust between clinicians and families is essential to supporting decision-making. Being aware that patients and families may have earned distrust in health systems due to systemic injustices underscores the importance of building trust through honesty, transparency, and demonstration of care for patients. Clinicians should also work to advocate for ways in which the broader health system can work to restore trust with communities who have been historically marginalized.

Ableism

Case: Mr. Johnson is a 35-year-old man with spastic quadriparesis secondary to cerebral palsy. He is nonverbal at baseline. He is admitted to the hospital for management of a urinary tract infection. A medical trainee on his team wonders about how he lives with such “low quality of life.”

Case: Mr. and Mrs. Smith have struggled with fertility for several years and finally have conceived via in vitro fertilization. At birth, their baby has Apgar scores of 3 and 4 and a cord gas with a pH of 6.8 concerning for neonatal hypoxemic–ischemic encephalopathy.

Ableism, or discrimination in favor of able-bodied people,[8] is relevant in how people with neurologic disorders experience the world and in how clinicians counsel patients about medical decision-making. Ableism is a form of discrimination that can be detrimental to patients and their families and can be experienced on an individual or structural level. Like structural racism, structural ableism describes policies, practices, privileges, and social environments that advantage nondisabled people over those with disabilities.[38] People with neurologic conditions can experience decrements in their ability to perform activities of daily living due to motor, cognitive, or executive impairments and/or alterations in consciousness that impact their ability to interact with the world around them.

Mr. Johnson is experiencing ableism in the learner's perception of his quality of life. He may receive worse care due to his clinician's bias and because his care team may not know the nuances of his care needs. Parents of children with neurologic impairment often feel that their child's care team has limited understanding of their child's care needs and that this disconnect can negatively affect their care.[8] [39] Mr. Johnson may also experience structural ableism in how he moves about the world. With his quadriparesis, he likely has limited options for mobility unless his community has accessible transportation and establishment options. He may also be at risk for increased complications due to limited access to skilled nursing and supportive care.

Mr. and Mrs. Smith are at risk for experiencing ableism when discussing their goals of care for their newborn infant. In this baby's case, the risk of developing a static encephalopathy is high due to perinatal neurologic injury; however, it is challenging to prognosticate how this neurologic injury may manifest. A clinician with implicit ableist bias may be more likely to counsel the family to withdraw life-sustaining treatment due to risk for severe neurologic impairment and “decreased quality of life.” Conversely, a clinician who is aware of their implicit bias may be more conscious of exploring a family's hopes and fears before moving forward with decision-making. Furthermore, clinicians may misjudge “quality of life” based on assessments when patients are ill and hospitalized and discount family reports of value of their loved ones life or good days outside of the hospital. It is important to note that “quality of life” is inherently a value-laden judgment. While considerations of quality of life can be appropriate in helping to set goals of care, it is key to make sure quality of life is assessed from the patient's perspective.

Conclusion

Core tenants of ethics and morality should be integrated into all aspects of medical care. Practitioners of neurology, a field dedicated to the quality of life and personhood of people experiencing neurologic illnesses, will encounter many ethical dilemmas through their practice. Framing medical decisions around the core tenants of beneficence, nonmaleficence, autonomy, and justice can help clinicians thoroughly explore ethically challenging situations while also keeping in mind the unique situation in every patient's story.

Conflict of Interest

None declared.

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Publication History

Article published online:
24 June 2024