Ethical and practical concerns of heart rate monitoring: Enabling communication for patients with severe communication difficulties

Abstract

Monitoring technologies to aid communication in long-term patient care may enhance safety but infringe on privacy. While autonomy is a primary value in bioethics, definitions of autonomy often take for granted a minimum level of communicative ability. This paper explores how contemporary philosophical arguments for using long-term preventative monitoring apply to individuals without the ability to consent to such technologies. Specifically, how do the ethical principles of autonomy, justice, safety, and privacy manifest when implementing technologies such as long-term heart rate monitoring for individuals with severe communication difficulties? While monitoring someone without their consent is ethically problematic, providing heart rate monitoring for individuals with severe communication difficulties may be morally imperative as a necessary means of interaction. Heart rate monitoring enhances their autonomy by offering a form of communication, and it shows promise as safety-inducing through quicker detection of distress. Simultaneously, heart rate monitoring is a form of surveillance, thus potentially violating privacy; and misinterpretation or over-reliance on such data might undermine the patient's autonomy, lead to unnecessary interventions or result in reduced human interaction. Restricting monitoring based on consent capacity may deepen care disparities and violate the justice principle but so does selectively applying it to disabled individuals. We conclude that heart rate monitoring might greatly benefit this population, but we need to balance potential benefits for the individual with the risks, trained caregivers must integrate data with other cues, and we need data encryption, collaborative decision-making, and regular reassessment.

Keywords

Health monitoring non-verbal verbal autism neurodevelopmental disorders patient communication bioethics

Introduction

Consider Sophia (Identifiable details of the case, including gender, age, and name, have been altered to ensure confidentiality. This case example will be revisited in greater detail later in the article.), a 19-year-old woman with a neurodevelopmental condition. She lacks verbal language, has limited motor control, and presents atypical facial expressions. This limits the extent to which her feelings, thoughts, and pains are understood by those around her. Residing in a care home with over 60 employees, Sophia is at high risk of experiencing stress and pain without anyone realizing it. We will revisit Sophia's story throughout our discussion.

Clinicians bear the dual responsibility of advocating for the care of individuals like Sophia, balancing the principle of beneficence with respect for their autonomy and preserving inherent “humanity, dignity, and worth.”¹ Individuals with severe developmental disabilities often do not receive adequate care, violating the principle of justice in healthcare access, as is evident in their lower life expectancy and higher mortality rates.^2,3 With the increased prevalence of dementia-,^4,5 autism-,⁶ and other neurodevelopmental disorders,⁷ and increased survivors of conditions such as brain tumor⁸ and stroke,^9–11 the amount of people unable to effectively communicate their symptoms is growing. Due to the complexities associated with these conditions, these patients frequently require specialized medical consultation and hospitalization,¹² with a considerable need for improved health monitoring.^13,14 This is especially true for individuals who lack cognitive and motor abilities to such an extent that caregivers are unable to discern that the person is experiencing pain. In the current paper, we refer to this latter patient group as individuals with severe communication difficulties.

Technology has the potential to improve independence, participation, and quality of life for people with complex needs.¹⁵ The United Nations Committee on the Rights of Persons with Disabilities¹⁶ and Norwegian national guidelines for health services,¹⁷ state that society must assist those with no functional speech in utilizing appropriate communication. Monitoring technologies refer to tools or systems designed to continuously observe, measure, and track various physiological, environmental, or behavioral parameters such as heart rate monitors, motion detectors, and wearable sensors that track vital signs or movement. These technologies collect real-time data to assess a person's health, safety, or well-being, often providing feedback or triggering alerts at specific thresholds. In health care, monitoring technologies are essential in both acute care and chronic condition management, as they enable early detection of pain and stress, improving patient outcomes.¹⁸ Specifically, heart rate monitoring may help identify potentially painful or distressing situations and improve communication between patients and caregivers.^19–22 Heart rate monitoring may provide useful data regarding cardiac autonomic responses. Although heart rate cannot reliably differentiate between pain and other high-alert states, it has great potential when used in conjunction with behavioral indicators and the broader clinical context.¹⁹ While those that can provide consent widely use heart rate monitoring for its health benefits, those with severe communication difficulties are often denied access. A primary reason for this seems to be an uncertainty of the ethics surrounding the long-term surveillance these technologies entail. The ethical discourse surrounding the use of monitoring technologies in long-term care is marked by the tension between enhancing patient safety and respecting privacy and autonomy.²³ Use of such technologies for persons who cannot consent has sparked considerable ethical debate among healthcare professionals, jurists, and ethicists^24,25 stemming from both precautionary principles and concern for potential exploitation and invasion of privacy.²⁶ However, insights from this debate are not directly applicable to the care of patients with severe communication difficulties as definitions of autonomy assume certain social, intellectual, and physical abilities—premises that do not hold for this patient group.

Furthermore, monitoring technologies are subject to a complex legal framework. In Norway, the Health and Care Services Act (Chapter 9) refer to such technologies as “intrusive systems” (§9-5b), classifying their use as coercive even when the disabled person show no resistance. For those unable to consent, physiological monitoring must meet strict standards of necessity, proportionality, and minimal intrusiveness.²⁷ These rules align with broader data protection laws like the European Union's General Data Protection Regulation and the US' Health Insurance Portability and Accountability Act, which enforce consent and security for health data. However, these laws fail to specify how to practically evaluate autonomy, privacy, or safety; and there's no clear guidance on how to determine if privacy is adequately protected in these situations, beyond technical data safeguards. Moreover, the regulatory bodies often lack specific expertise in both monitoring technologies and the needs of this patient group, resulting in decisions that may be inconsistent or poorly informed. This gap highlights the critical need for discussions that deeply explore these ethical dilemmas, offering a base to guide both caregiving practices and regulatory oversight.

Our aim is to explore the nuanced ethical implications of heart rate monitoring as a means of enhancing caregiver interactions and improving patient well-being. To facilitate this analysis, we present the case of Sophia—an illustrative example informed by our clinical experience at a neurorehabilitation center and via interaction with research participants in our studies. Through this case, we explore the application of key ethical principles for persons with severe communication difficulties.

Our research question is: How do the ethical principles of autonomy, justice, safety, and privacy manifest when implementing technologies such as long-term heart rate monitoring for individuals with severe communication difficulties? (As researchers engaged in the study of heart rate monitoring, we acknowledge that our perspective is shaped by firsthand experience with its benefits. This paper does not claim to offer a neutral or exhaustive evaluation but rather explores the ethical dimensions of its implementation, particularly for individuals with severe communication difficulties. While our discussion is largely centered on the potential advantages of this technology, we remain cognizant of its ethical challenges and have sought to critically engage with concerns regarding privacy, consent, and potential misuse.)

Terminological definitions

The following definitions provide the foundation for the critical analysis of ethical principles in the context of heart rate monitoring,

Autonomy

Albeit a crucial concept in the context of health surveillance, autonomy is often used interchangeably with privacy in health surveillance literature.^25,28–30 Autonomy may be defined as the capacity to be one's own person, shaping life according to personal reasons and motives, free from manipulative external forces.^31,32 Thus autonomy hinges on liberty (freedom from controlling influences), agency (the capacity for intentional action), and understanding (the ability to understand the content and consequences of alternatives).³³ In the contemporary discourse of disability,^34–36 autonomy extends beyond traditional notions and has been reconceptualized as the capacity to establish meaningful connections and relationships.³⁶ In this and other relational definitions, autonomy is “distributed agency,” meaning that the autonomy is dispersed among human actors interconnected at specific times.^37,38 For coherence with the modern understanding of autonomy,^39–41 and with specific relevance to the context of health monitoring in individuals with severe communication difficulties, autonomy is herein defined as the capacity to influence personal choices in everyday life.

Privacy

Privacy encompasses many concepts,^42,43 including freedom of thought, control over one's body, solitude in one's home, control over personal information, freedom from surveillance, protection of one's reputation, and protection from searches and interrogations.⁴³ An early definition of privacy is of Westin: the ability to determine for ourselves when, how, and to what extent information about us is communicated to others.⁴² This definition focuses on control over personal information and is related to the concept of confidentiality.³³ However, privacy broadly covers personal spaces and control over information, both supporting individual autonomy. Especially relevant for our discussion is an alternative definition focusing on the social aspect of privacy: respect for one's essence as a human being, including individual dignity and integrity, personal autonomy, and independence.⁴⁴ As we examine a particular aspect of privacy related to health monitoring and autonomy, privacy is used herein as respect for one's essence as a human being, control over information about oneself to maintain intimacy, and solitude in one's home; as other relevant aspects of privacy (such as control over one's choices) lies within our definition of autonomy.

Safety

The third pivotal concept to be defined for our discussions is safety. In non-technical contexts, the word is often used to refer to lack of injury or risk. The two terms used to define safety are equivocal; injury is (to a certain extent) subjective and often related to one's baseline; risk has at least four specialized meanings including potential unwanted events, their causes, probability, and statistically expected values.⁴⁵ The principles of beneficence and non-maleficence are integral to safety, with beneficence entailing the duty to promote the well-being of others; and non-maleficence as the duty to avoid harming or injuring others.³³ For our discussion, safety is herein broadly defined as protection from danger, risk, or injury, integrating elements of beneficence and non-maleficence.

Justice

Justice, as a foundational ethical principle, is concerned with the fair distribution of benefits and burdens within a society. In health care, justice is often framed in terms of equitable access to resources necessary for maintaining health and well-being.⁴⁶ Rooted in theories of distributive justice, justice demands that individuals have access to health interventions that enable them to function within a reasonable range of societal opportunities. In the context of health surveillance, justice encompasses the fair application of monitoring technologies to prevent discriminatory practices while ensuring that vulnerable populations’ privacy and dignity are protected. Justice is herein defined as the fair allocation of health resources, interventions, and equitable access to care.

Surveillance

Surveillance covers a spectrum from benign parental monitoring of newborns to intrusive practices like wiretapping. The philosophical and research literature ties consent to the ethical evaluation of surveillance, as consent can justify surveillance.⁴⁷ However, the lack of consent may not automatically invalidate it: public safety justifies surveillance in public; emergency medical procedures are conducted without consent on unresponsive patients; and we accept routine security checks at airports. When consent is not possible, the dichotomy between autonomy and safety becomes crucial for an ethical evaluation. For our discussion, the term surveillance is used broadly, defined as the close and sustained attention to another, beyond just visual and auditory measurement.⁴⁷

Heart rate monitoring as an example of technological long-term monitoring

Heart rate monitoring captures physiological parameters and activity patterns, offering insights into an individual's health status as a non-invasive window into the central nervous system.²² Heart rate can be used as a marker for reactivity to painful events and is commonly used in neonatal pain assessment and care.^22,48–54 While heart rate is not a specific indicator of pain, it has emerged as a non-invasive means to identify probable painful events in contexts where self-reporting is challenging.^55–57 Heart rate reflects broader reactivity, and encompasses states like tension, anger, or fear through its link to stress hormones.²² Heart rate has been used to predict acute stress in people with autism (Here we use to person-first language in alignment with guidance from the Norwegian Autism Association, but we recognize that there are varied preferences for language.)^58,59 and patients with severe communication difficulties.¹⁹ The alternative of non-technological monitoring, such as manual heart rate checks at the wrist (arteria radialis) or neck (arteria carotis) instead of long-term electrocardiogram monitoring, can provide momentary snapshots of heart rate, but do not offer calculation of averages, ranges, and heart rate variability, crucial for identifying abnormal patterns. Furthermore, technological monitoring systems may be equipped with dynamic alert mechanisms for when the heart rate crosses predefined thresholds that may be adjusted in real time, adapting to the patient's changing condition, which enhances precision. Additionally, continuous heart rate monitoring allows patients to automatically alert caregivers to abnormalities, promoting a more proactive and independent approach to care, unlike manual pulse checks that rely on caregivers’ initiative. Overall, long-term heart rate monitoring as a proxy for pain enhances specificity by capturing physiological changes over time, allowing for the identification of consistent patterns and correlations with pain-related events that may not be evident in short-term or one-time measurements. Heart rate monitoring offers a compelling case for the ethical considerations of health surveillance in individuals unable to provide consent. Together with Sophia, heart rate monitoring will serve as the practical and clinical anchor of our discussion.

The case of Sophia

To discuss how ethical principles intersect or conflict in the context of heart rate monitoring for individuals with severe communication difficulties, we look to the clinical case of “Sophia.” (Identifiable details of the case, including gender, age, and name, have been altered to ensure confidentiality while preserving the essential clinical context for discussion.) She is a 19-year-old with cerebral palsy (CP), a descriptive umbrella for a spectrum of non-progressive motor impairments, resulting from brain injury or malformation during early development.^60–62 Such injury to the developing brain often comes with comorbidities, and Sophia suffers from spasticity, cognitive deficits, muscle weakness, and epilepsy. She has intellectual disability, a condition affecting about 1% of the population^63,64 and diagnosed based on cognitive deficits and impaired adaptive functioning since childhood.^65,66 Sophia is diagnosed with profound intellectual disability with an approximate intellectual quotient of <20.⁶⁵ While the diagnosis helps define Sophia's clinical profile, it does not capture the full range of her communicative cues or day-to-day needs. Her parents and long-term caregivers recognize subtle cues of stress—such as changes in eye movement, gurgling sounds, or shifts in posture. However, these signs are ambiguous and easily misinterpreted, particularly by new or rotating staff. With over 60 different caregivers involved in her daily life, it is unlikely that her distress is consistently recognized.

A recent incident is particularly illustrative of this. One morning, Sophia exhibited signs of discomfort—sweating, disrupted sleep, and pallor—but her symptoms were mistaken for menstrual cramps. At a doctor's visit later that day, the absence of verbal or gestural confirmation led to her symptoms being dismissed. By the next morning, she was pale and minimally responsive, leading to emergency hospitalization. There, an elevated heart rate was noted, and its sharp increase during abdominal palpation led to the correct diagnosis. By then, her appendix had ruptured, a severely painful state that required extensive treatment. This would have been avoided had the condition been identified a day earlier. Fortunately, incidents like these are rare, but they underscore how critical preventive technological monitoring can be for patients like Sophia, where even extreme pain such as the one associated with appendicitis can easily be overlooked. In this case, heart rate monitoring eventually ensured that caregivers were able to make an informed decision aligned with the best interests of Sophia.

Following this incident, Sophia's parents wanted the use of continuous heart rate monitoring to prevent similar delays in recognizing medical distress. However, under Norwegian law (Health and Care Services Act, Chapter 9), physiological monitoring of individuals with developmental disabilities is considered an intrusive intervention, and the request was denied. While relying on behavioral cues to assess her well-being, her caregivers remained concerned that another critical event might go unnoticed.

Sophia's story raises ethical questions about autonomy, safety, justice, and privacy: Should technological monitoring be implemented to enhance her ability to “communicate” distress through physiological data, thus increasing autonomy and safety, and providing her with a more equal chance of adequate health care, or does it impose too great an infringement of privacy?

Discussion

The integration of technological monitoring in health care introduces a complex interplay between the concepts of beneficence and non-maleficence on the one hand, and autonomy and privacy on the other. For the implementation and use of technologies, non-maleficence needs to be balanced against beneficence, applying the least intrusive option, and being likely wanted by the patient had she been able to consent.²⁷ The lack of ability to consent or assent results in attempts to safeguard through exclusion from research,⁶⁷ as well as benefiting from advances in medical technology. In the following section, we present a discussion regarding the ethics of long-term monitoring technologies used for individuals with severe communication difficulties. Table 1 provides an overview.

Table 1.

Overview of principles discussed.

Term/concept	Definition used for our discussion	How it relates to HR monitoring	In Sophia's case
Autonomy	The capacity to influence personal choices in everyday life.	May enable individuals with severe communication difficulties to express distress or preferences. However, continuous monitoring may limit self-determination if wrongly used.	HR monitoring gives Sophia a way to communicate distress, but she cannot control when or how it is used. Risk of caregivers misinterpreting physiological data, potentially making decisions that do not align with Sophia's actual experience or preferences.
Privacy	Respect for one's essence as a human being, control over information about oneself to maintain intimacy, and solitude in one's home.	May reduce the need for constant in-person monitoring. However, it collects sensitive physiological data without explicit consent.	HR monitoring allows Sophia private time in her room while ensuring safety. However, her caregivers now have access to information about her that was previously private (her HR).
Safety (beneficence and non-maleficence)	Protection from danger, risk, or injury.	May enable early detection of distress or medical issues. However, may create anxiety or discomfort if perceived as intrusive.	HR monitoring may detect Sophia's distress, but she may find it unsettling to be monitored.
Justice	Fair and equitable access to care and resources.	Helps provide individuals with severe disabilities better health care. However, if not widely accessible, it could deepen health disparities.	HR monitoring helps caregivers meet Sophia's needs and provide more equal care.

HR: heart rate.

Challenges in applying the principle of autonomy and privacy in severe disability

Traditional autonomy assumes decision-making capacity. Sophia cannot interact with what she wants, nor decide where to go or whom to meet; she cannot decide how her legs are placed or how she lies in bed; she cannot move away when she feels pain or move toward what she desires. Caregivers assume the responsibility for these decisions as Sophia lacks explicit means of communication and the ability to effect changes unassisted. If she is not competent and does not express preferences, arguably there is no autonomy to respect or balance. In such cases, beneficence and non-maleficence might seem to outweigh autonomy considerations, leading to a straightforward ethical justification for monitoring technologies. However, we argue that this framing is insufficient and overlooks the ways autonomy can still be meaningfully engaged through relational and distributed models. This reconceptualization is essential when evaluating monitoring in individuals like Sophia.

Without much power, but not a child

The definition of autonomy as the capacity to make one's own choices, ties closely to the concept of power. Surveillance may give power to the surveillant and take power from the surveilled through the gathering of private information.⁴⁷ Parental monitoring of infants in paternal care is justified as a duty of the empowered parent over the powerless infant. It is as children gain independence that their right to privacy grows. Arguably, as Sophia doesn't achieve independence and her caregivers are chronically responsible for her safety, a reduced level of privacy is inevitable. However, her need for care does not immediately disarm the importance of respecting her privacy. Individuals with severe communication difficulties are not analogous to children, despite the oversimplified notion of “mental age.”⁶⁸ Applying the same decision-making “rules” for caregivers may not be appropriate, as individuals with developmental disabilities deserve acknowledgment of their adulthood. Sophia should be shown respect in age-appropriateness in all areas of life that affect one's status and identity in a given culture as it respects her dignity, adheres to ethical and legal standards, and as it may improve her well-being.⁶⁹ Notions better equipped for this acknowledgment is relational and distributed autonomy.

Relational and distributed autonomy in care

Autonomy does not exist in isolation but is shaped by interpersonal relationships and contextual dependencies. The concept of relational autonomy emphasizes that individuals, particularly those with disabilities, exercise autonomy within a network of caregivers, family members, and healthcare providers. Sophia's autonomy is not absent but rather mediated through surrogate decision-making (Refers to collectively made decisions, that is no longer attributable to any single individual member of the group. We are using the term instead of “shared decision-making” as the patients with severe communicative difficulties cannot explicitly contribute to the decision-making, but their interest is kept in focus through a group of individuals that know the patient well, collectively deciding.), where caregivers interpret and act upon her best interests. Similarly, with the notion of distributed autonomy, we recognize that agency can extend beyond the individual to include technological aids, physiological signals, and caregiving structures. In Sophia's case, heart rate monitoring serves as an extension of her ability to communicate distress, thereby enabling a form of indirect autonomy.

Some patients with severely impaired communication can still express forms of assent that the healthcare personnel and caregivers should be sensitive to. Caregivers have a responsibility to support this ongoing negotiation of assent, creating opportunities where patients can indicate their willingness to participate at any stage of the process.⁷⁰ This requires continual adjustments to ethical considerations based on the unique ways individuals express themselves and their needs and necessitate trust, and understanding of the relational and contextual nature of assent. However, the patients must still rely on caregivers’ keen observations of subtle signs or indirect cues to interpret their preferences.

Even with collaborate- and surrogate decision-making done right, behavioral assessment may not be sufficient^71–73 to capture the nuances of Sophia's needs. The integration of monitoring technologies can mitigate the limitations associated with relying solely on caregiver observations.¹⁹ Heart rate monitoring has the potential to empower minimally communicative patients with a new form of communication,¹⁹ with physiological responses indicating specific needs or preferences otherwise unknown. Thus, in some cases, not providing physiological monitoring may restrict opportunities for supported autonomy.

Risk severity

A major challenge regards the impact of risk severity. Scenarios involving life-threatening conditions may underscore the need for monitoring, but the line between protection and autonomy infringement becomes increasingly blurred the lesser the acute risk. The ambiguity is evident in safety measures like bed rails or restrictive interventions, intended to prevent harm but potentially impeding an individual's freedom. If a child has a cardiovascular condition, implementing constant monitoring to detect fibrillations and avoid cardiac arrest is considered ethical, despite the child resisting. The lack of such implementation could be considered unethical, granted the condition was severe and the caregiver gave consent. Similarly, but with lesser risk, a bed rail to prevent a fall will also prevent the child from moving out of the bed if she wishes but is generally considered ethically just. As the child grows, and develops a sense of self with own intentions, the use of a bed rail might cross the line to unjust autonomy infringement. Say a 16-year-old has a rail preventing her from moving out of bed, this would generally be considered ethically unjust. But say this girl has CP, and if she were to move out of bed, she might fall and hurt herself. Or say she can move with intent, but also has frequent epileptic seizures that have previously caused her to fall out of bed. Is the bed rail then ethically just? This reflects the difficulty of where to draw the line between safety protection and autonomy infringement, especially evident in the case of disability.

Why safety cannot overrule all other principles

Invoking autonomy in this context may dilute its meaning or obscure the role of beneficence. Why not rely solely on beneficence and non-maleficence to justify monitoring technologies? The answer may lie in the ethical significance of respecting autonomy where it can be meaningfully exercised. Even when full self-determination is not possible, individuals like Sophia have preferences, experiences, and responses that warrant consideration. Overlooking autonomy risks reducing individuals with severe disabilities to passive recipients of care. Besides, a purely beneficence-based argument might justify any form of intrusive monitoring if it reduces harm. By maintaining autonomy as a relevant concern, we create a framework that demands a more careful balance—where monitoring is justified not only by its potential benefits but also by its ability to support agency, however indirectly.

What about privacy, should safety take precedence there? Perhaps—but not at any cost. No person with disabilities should be subjected to arbitrary interference with his or her privacy.⁷⁴ Individuals with developmental disabilities face an elevated risk of privacy violations, and ethical reviews of electronic monitoring for cognitively impaired persons highlight concerns about diminished autonomy and surveillance-driven care.^25,75 For those unable to advocate for their rights, it is crucial to navigate these ethical complexities rather than defaulting to the simplistic notion that safety justifies most intrusions. The privacy implications of such technologies must be rigorously assessed and addressed.⁷⁶

Monitoring as privacy-enabling

While heart rate surveillance can infringe on the principle of autonomy and reduce a person's privacy, it may also facilitate increased privacy and autonomy. Allowing a patient to spend a few hours alone in their room could be seen as granting them increased privacy compared to the constant physical presence of health personnel. Moreover, eliminating the need for continuous physical checks, heart rate monitoring may enable longer periods of rest and deeper sleep, which may lead to improved health and well-being. The proposition that heart rate monitoring may fortify privacy becomes apparent, as the sensor may grant her solitude in her own home. Given its concurrent enhancement of safety and apparent positive impact on the quality of care provided, there may be an ethical imperative to integrate such technology into healthcare practices.

However, we know nothing of whether Sophia experiences being technologically monitored as more private than being accompanied by a caregiver. When considering whether detecting activation involuntarily through heart rate should be considered a privacy infringement, we should consider the analogous scenario currently used in the care of this patient group. The primary way to assess pain, emotion, and general experiences in this patient group is by interpreting facial expressions.⁷⁷ While individuals without communication difficulties typically exercise some degree of control over their facial expressions,⁷⁸ Sophia and others with severe and profound disability frequently lack such intentional control.^79,80 It would, however, be nonsensical to disallow caregivers to read and interpret the patients’ facial expressions. Arguably, there is a big difference in that while facial expressions are authentically and passively available to the caregiver, to measure heart rate is to actively investigate something not immediately accessible in daily interaction. This does not mean heart rate equals less privacy. First, it is not a given that taking active measures to interact with another is more invasive than “passive” ones, and second, it is not a given that employing technology is more invasive than human actions without technology. With this in mind, it is not apparent that heart rate monitoring is less ethical than reading of facial expressions.

Unlike facial expression analysis, heart rate monitoring generates health data vulnerable to hacking or unauthorized sale. Secure storage, ideally de-identified if cloud-based, is critical for ethical and practical implementation of this technology. This security is a prerequisite for any meaningful discussion of privacy, autonomy, and safety in heart rate monitoring. With robust data-privacy safeguards, ethical questions persist about how such technology aligns with individual preferences and needs.

Autonomy, risk, safety, and sense of safety

We do not know if Sophia would prioritize privacy over potential health risks. We do know human nature tends toward seeking meaningful interactions and that individuals without disability promptly share vital information to alert others of pain, such as a broken bone or skin being pinched. Can we extrapolate from this that individuals with severe communication difficulties would want heart rate monitoring?

Monitoring is intended to enhance safety²⁰ in a physiological sense. For individuals like Sophia, who cannot signal distress verbally, it offers a means to detect risks caregivers might overlook. While monitoring may enhance physiological safety by reducing measurable health risks, it could simultaneously undermine an individual's subjective sense of safety if the technology is perceived as invasive, uncomfortable, or a source of stress. To further discuss this, we must first ask if we can assume physiological safety not to be our highest value.

As a society, we accept less safety and more risk the higher the autonomy of the individual. One proposition is thus whether the same amount of risk should be accepted for persons with and without severe communication difficulties. At a hospital, an adult can request a different treatment or refuse to be treated at all; however, we would not refrain from the safest and most effective treatment option for an infant due to resistance. In clinical practice, patients without the ability to consent often receive interventions like restraints to prevent self-harm, prioritizing physical safety. We must accept less risk for people without an unequivocal voice partly because we cannot assume them to accept a higher risk. Does it follow then that safety should be considered more important than autonomy for patients with severe communication difficulty? If so, then heart rate monitoring, as physiologically safety-inducing, should be endorsed—even if it does not provide a sense of safety.

Applying feasibility- and awfulness standards

Pertaining to the discussion of autonomy versus safety as a whole, one might use the feasibility- and awfulness standard.⁴⁷ The first standard is fulfilled when there is a reasonable expectation of success, and when the outcome cannot be reached with more conservative methods; the second one is met when the alternatives are worse than the proposed course of action.

We can apply the feasibility standard to our case in the following manner: (1) heart rate has shown promise as a communicative aid for this patient group. (2) The alternative to the status quo is little to no communicative interaction; or alternatively videotaping, which is generally considered more intrusive; or measures of respiration and sweat secretion, which is also generally regarded as more intrusive and it is much less normalized than heart rate monitoring (which is widely used by consenting individuals who use watches that can track heart rate). We can apply the awfulness standard to our case in the following way: without heart rate monitoring these patients might be in considerable pain without the ability to communicate it, and thus not provided adequate medical care. Lack of means of interaction may isolate these individuals, and heart rate may alleviate some of this isolation. In this way, arguably both the feasibility- and the awfulness standards are met in the case of heart rate monitoring of people with severe communication difficulty.

Unintended consequences of heart rate monitoring, the potential of harm

Despite its promise, heart rate monitoring carries ethical and practical risks. Privacy advocates and disability rights groups have expressed concerns about surveillance technologies contributing to loss of agency and dignity for individuals with disabilities,²⁵ and individuals with developmental disabilities are at an increased risk of privacy violations.⁷⁵ We are not the first to review the ethical issues of electronic monitoring for cognitively impaired persons, highlighting potential pitfalls like loss of privacy and autonomy⁸¹; however (to our knowledge) this is the first article to specifically discuss long-term monitoring of heart rate for persons with severe developmental disabilities. The need for such ethical scrutiny stems from both precautionary principles and potential concerns from stakeholders (e.g. advocates, administrators, service recipients, family) regarding the risk of exploitation and invasion of privacy.²⁶ Some apparent risks are discussed in the following segment.

First, wrongful sensor reliance may include heart rate monitoring leaving Sophia unattended for longer than for purely what is beneficial for her privacy and sleep. Such misuse might inadvertently increase Sophia's isolation, rather than decrease it. Over-reliance on devices is a phenomenon observed in other technology contexts and can reduce face-to-face communication.⁸² Second, wrongful interpretation of changes in heart rate may cause caregivers inadvertently to exclude joyous situations due to assumed fear or pain. This way, Sophia's heart rate monitoring may result in less autonomy and well-being.

Third, inappropriate surveillance may lead to a loss of privacy not justified by increased safety or autonomy. Unchecked use of monitoring technologies risks contributing to a culture of surveillance, where individuals are subjected to excessive observation. This parallels broader societal debates on surveillance creep, where technologies intended for specific purposes are repurposed for unauthorized monitoring, as seen in wearable fitness trackers being used by employers to track employee behavior.⁸³ Fourth, excessive normalization of physiological data may result in unnecessary medicalization. If caregivers or clinicians expect heart rates to always conform to standardized norms, deviations—whether benign or meaningful—may trigger unwarranted concern, leading to unnecessary interventions.

Finally, there is the risk of mediation and substitution, where technology-mediated interactions replace genuine human connection, potentially diminishing the quality of care.⁸⁴ This could reduce trust between caregivers and patients, a concern echoed in studies of providers reporting feeling less connected emotionally to their patients.⁸⁵ Consider a scenario where heart rate monitoring becomes the default method for assessing distress, leading caregivers to prioritize physiological data over direct engagement with Sophia. A caregiver might overlook subtle, non-physiological expressions of discomfort, assuming that an unchanged heart rate signifies well-being. This may not just be the misinterpretation of data but a fundamental shift in caregiving practices that deprioritize human connection in favor of algorithmic decision-making. Although these risks remain largely hypothetical in the context of heart rate monitoring for Sophia, they merit consideration given the stakes of caregiving relationships.

It is important to consider if potential adverse outcomes may outweigh potential benefits. The risk of misuse of surgical instruments does not stop surgeons from using these tools for precise procedures, where stringent protocols and skilled professionals ensure successful outcomes. Similarly, as improved sensor guidance, caregiver training, and ethical oversight can mitigate the risks of heart rate misuse and misinterpretation, we should not prohibit heart rate monitoring. However, unlike medical tools used in controlled clinical environments, heart rate monitoring occurs continuously in less regulated settings, such as care homes or private residences, where caregivers may vary in training, oversight is limited, and ethical considerations must account for long-term implications. To mitigate these risks, heart rate monitoring must be integrated as a complementary tool rather than a replacement for attentive caregiving. Ethical implementation requires continuous evaluation of its impact on care dynamics, clear guidelines on how physiological data should be interpreted alongside behavioral cues, and safeguards against the encroachment of surveillance-based decision-making.

Considering the context of improved care: a case for heart rate monitoring

Imagine Sophia was allowed a heart rate monitoring device. Her caregivers discover an increased pulse when stretching her right arm. This could indicate pain from extending the arm, possibly because of her spasticity. Based on this finding, her physiotherapist developed a more tailored training program to help with the spasticity including more frequent use of casts. Sophia's increase in heart rate as her right arm was stretched could also help guide physiotherapy; her increased heart rate when lifted could remind the personnel to be more careful with her hip; her low heart rate as she listened to music could indicate what gave her rest; and her vigorously pounding heart at the sight of her antiepileptic medication could inspire a change of routines in how the caregivers administered her pills. Such aid could make a considerable difference to her parents, her doctors, her caregivers at the institution, and most importantly Sophia herself.

While one might posit that reliance on heart rate for interpretation may not necessarily contribute to a comprehensive understanding of Sophia's well-being; heart rate monitoring's potential lies in expanding the range of available communication means. The heightened understanding facilitates informed decision-making by caregivers, aligning their actions with the best interests of Sophia and ultimately fostering increased autonomy of the patient.

Sophia's case exemplifies both the promise of heart rate monitoring and the ethical questions it raises. Her experience highlights the need for clearer guidelines and better oversight to ensure that technology supports, rather than supplants, compassionate care. When correctly used, heart rate monitoring may sometimes be a valuable tool in patient care that supports personalized and compassionate care for persons who otherwise cannot communicate their needs.

Concluding comments

Conventional philosophical precepts cannot be directly applied to patients with severe communication difficulties. Specifically, traditional autonomy, as independent decision-making, is limited for this population; and the tension between autonomy, privacy, and safety becomes more complex. Heart rate monitoring shows promise as safety-inducing and may even enhance autonomy by offering a form of communication; simultaneously it risks undermining autonomy if misinterpreted or over-relied upon. Privacy and beneficence also conflict as monitoring could improve the health care provided and reduce intrusive interventions, yet introduce new surveillance concerns. Justice adds another layer as restricting monitoring based on consent capacity may deepen care disparities, while selectively applying it to disabled individuals risks discriminatory surveillance. Ethical safeguards must balance these competing principles.

To use heart rate monitoring ethically, we propose that: (1) the communicative potential of the monitoring for the individual patient should be balanced against the risks; (2) caregivers should be trained to interpret heart rate data alongside other signs, such as facial expressions or body language, to avoid relying solely on technology; (3) data encryption, restricted access, and regular checks are needed to protect privacy; (4) individuals, their families, and disability advocates should be involved in decisions about monitoring, to respect dignity and agency; and (5) the monitoring should be reassessed periodically to ensure it is not causing unintended harm. When correctly used, heart rate monitoring may be a valuable tool in patient care that supports personalized and compassionate care for persons who otherwise cannot communicate their needs.

We recognize that our experience with heart rate monitoring shapes our perspective. While many of the risks discussed remain largely theoretical, ongoing discussions among ethicists, clinicians, caregivers, and disability advocates are essential. Future research should empirically examine both the clinical outcomes and ethical impacts of heart rate monitoring in real-world settings, including its influence on care quality, autonomy, and privacy, and whether safeguards effectively mitigate harm.

Footnotes

ORCID iD

Emilie SM Kildal

Author contributions

All authors (ESMK, BHM, TN, OAA, DSQ, BH) have contributed substantially to the present work. The first draft was written by ESMK. All authors have read and approved the final manuscript.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Data availability statement

Data sharing not applicable to this article as no datasets were generated or analyzed during the current study.

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