Extending patient-centred communication to non-speaking intellectually disabled persons

Abstract

Patient-centred communication is widely regarded as a best practice in contemporary medical care, both in terms of maximising health outcomes and respecting persons. However, not all patients communicate in ways that are easily understood by clinicians and other healthcare professionals. This is especially so for patients with non-speaking intellectual disabilities. We argue that assumptions about intellectual disability—including those in diagnostic criteria, providers’ implicit attitudes and master narratives of disability—negatively affect communicative approaches towards intellectually disabled patients. Non-speaking intellectually disabled patients may also be taken to lack decision-making capacity and resultingly, may be given very little role in determining their care. But, given evidence of the heterogeneous communicative practices available to non-speaking patients, efforts should be made to extend patient-centred communication to them. We offer four suggestions for doing so: (1) treating those with non-speaking intellectual disabilities as potential communicators; (2) lengthening appointment times to develop relationships necessary for communication; (3) disentangling capacity from communication in concept and in practice; and (4) recognising the bidirectional connection between supported decision-making and patient-centred communication.

INTRODUCTION

Patient-centred communication, a core component of patient-centred care, aims to make patients active participants in discussions of their health and decisions about their care.^1–10 As an ideal, the concept grounds efforts to discern and promote a patient’s values and desired healthcare outcomes. It is often defined by the goals of eliciting patient perspectives, understanding patients within their unique psychosocial and cultural context, and reaching a shared understanding of patient problems and the treatments that are concordant with their values. Such an ideal often encourages a cluster of communicative practices, including reducing the use of medical jargon, privileging open-ended questions and assessing patient understanding and readiness. Such practices earn their keep largely through their promotion of autonomy and potential positive impact on clinical outcomes (eg, improved adherence to treatment recommendations and minimised distress with illness).^{2 8 9}

However, not all patients communicate in ways that are easily understood by healthcare professionals. Not all patients can speak, write, sign or use commonly understood gestures like nodding to mean ‘yes’ or furrowing their brows to indicate confusion. Infants and other young children, patients with neurodegenerative diseases or disorders of consciousness, individuals with certain psychiatric disabilities or mental illnesses, and those with more significant intellectual disabilities complicate typical approaches to communication altogether. These cases raise the concern that the motivations, practices and benefits of patient-centred communication afforded to others are not as simply afforded to them.

This paper explores the possibility of expanding the normative ideal of patient-centred communication to individuals with non-speaking intellectual disabilities and asks what practices would enable clinicians to do so.ⁱ Section I gives an overview of the salience and value of patient-centred communication as a component of patient-centred care, highlighting its role in respecting patients as persons and its potential to promote well-being. Section II explores how three interrelated factors (potential assumptions about communication and intellectual disability that are built into diagnostic criteria, healthcare professionals’ attitudes and master narratives of disability^{11 12}) affect communicative approaches towards and outcome disparities affecting intellectually disabled patients. Section III uses emerging data to illustrate how non-speaking intellectually disabled persons may and often do communicate—although in atypical ways. As such, we claim that efforts should be made to cultivate and enable atypical communicative practices with them in the healthcare setting. Accordingly, section IV offers four suggestions as starting points for promoting such communication in clinical practice, education and other professional activities: (1) treating those with non-speaking intellectual disabilities as potential communicators; (2) lengthening appointment times with relevant patients to cultivate the relationships necessary for such communication to occur; (3) conceptually and practically disentangling capacity from communication; and (4) appreciating the symbiotic connection between supported decision-making and patient-centred communication with these patients and their caretakers.

The discussion below is organised by the conceptual worry that there is a meaningful distinction between being non-speaking and being non-communicating, which is at best overlooked and at worst dismissed for non-speaking intellectually disabled persons in a clinical context. A clearer understanding of the causes of this conflation and its potential impact may reveal new practices that would better enable these patients to participate in patient-centred communication and offer healthcare professionals the tools to interact with such persons differently. While the bulk of our discussion centres the problems faced by non-speaking intellectually disabled patients in the United States, where the factors affecting care are compounded by the non-socialised, privatised health insurance industry, it is our hope that many of our remarks will have import more broadly.

Patient-centred care and communication

Emerging as an effort to improve healthcare outcomes, emphasise patient autonomy, improve overall quality of life, and, simultaneously, to reduce the overall societal costs of healthcare,^2–5 patient-centred care has increasingly guided healthcare systems in Western nations.^{6 9 10} It has been described as ‘a partnership among practitioners, patients and their families’ which ‘ensures that decisions respect patients’ wants, needs and preferences, and that patients have the education and support they need to make decisions and participate in their own care, as well as participate in quality improvement efforts’.⁷ By restructuring the dynamics of healthcare in favour of patient values, patient-centred care invites the involvement of patients in all aspects of their healthcare. This includes encouraging patients to understand and communicate their healthcare goals, and ultimately, to participate in the identification and adoption of interventions that will work best for them.

However, patient-centred care has been critiqued for its emphasis on patient self-determination.⁵ Expecting patients to be the driving force behind their care risks overburdening them with an inappropriate degree of responsibility for their healthcare outcomes. This accountability may require a high degree of self-determination and knowledge on the part of the patient, both of which may be more difficult to attain for patients facing social and accessibility barriers. In this way, traditional approaches to patient-centred care privilege the autonomous and independent care seeker, imperfectly applying to those requiring more relational or dependent forms of care. This is not an unbridgeable gap, but rather an area in which additional social supports might be needed for certain classes of patients to participate in their care.

One core component of patient-centred care is patient-centred communication—a communicative ideal largely motivated by its ability to enable the patient’s participation in their own healthcare conversations. Responsiveness to the patient and their values often motivate particular patient-centred communicative practices, by recognising that such practices may maximise patient understanding and self-direction in value concordant treatment decisions.^{7 8} As an ideal, it often embodies a cluster of practices, including speaking slowly and clearly, pausing for questions, avoiding medicalese or technical jargon, and responding to cues suggesting distress, confusion, the need for guidance or the patient’s expression of their healthcare goals.^{1 2 10}

Notably, the core practices that make up traditional approaches to patient-centred communication often take for granted that the patient communicates in standard or near-standard ways, like speaking the same language as the care provider or speaking at all. General guidelines and practices often leave out, for example, the potential challenges of communicating altogether, focusing instead on the challenges specific to the content of a medical conversation (eg, promoting understanding of a complex diagnosis). But patients who are, for one reason or another, unable to speak for themselves encompass a wide range of cases, including infants and other young children, patients with neurodegenerative diseases or disorders of consciousness, individuals with certain psychiatric disabilities or mental illnesses, and those with more significant intellectual disabilities. Unsurprisingly, these patients may not be independent, autonomous care seekers, but instead might require the support of others throughout the course of their medical care.

Ideally, the healthcare provider would implement additional or modified communicative strategies to enable good communication and care in these cases. For a non-native English speaker in a primarily English-speaking hospital or clinic, the provider might bring in an interpreter. For a child, the provider might communicate with both the child and the parent or caretaker who has custody of their healthcare decisions.

In other cases, the provider might resort to more atypical means. For patients who have lost their ability to speak—perhaps as the result of a traumatic brain injury or a neurodegenerative disease—the provider might facilitate attempts to write or to interpret other bodily movements, such as hand taps or eye blinks as communicative signals.^{13 14} In fact, methods of training communication partners have been effective for acquired brain injuries, illustrating their potential for the development of related communicative practices for other non-speakers.^{13 14} These adapted practices are arguably guided by the normative ideals of patient-centred care and communication: promoting patient comprehension and expression of preferences, respecting patient autonomy and bringing about the most desired healthcare outcomes by communicating effectively about potential courses of care. The fact that patient-centred care and communication may be more difficult to achieve in these cases is sometimes embraced as motivating more resources, education and investment into making them possible.

However, care and communication often take a different shape with patients who have never had the ability to speak for themselves and who likely never will. Applications of patient-centred care and communication might be particularly complex for severely to profoundly, non-speaking intellectually disabled patients.

Healthcare disparities and communicative assumptions

Improving healthcare for those with non-speaking intellectual disabilities is an urgent project. Healthcare disparities between non-disabled and disabled persons are striking and well documented.^15–21 Intellectual disability, like other types of disability, positively correlates to incidence of chronic disease: studies have found that adults with intellectual disabilities had ‘a significantly higher prevalence of diabetes than did adults with no disability (19.4% vs 3.8%, respectively) and a significantly higher prevalence of six other major chronic conditions. In addition, individuals with cognitive limitations and diabetes were significantly more likely to have multiple (four or more) chronic illnesses’.²¹ Furthermore, although the prevalence of chronic disease is much higher for disabled members of the population, they are significantly less likely to have received preventative care.¹⁹ While there are little data on the specific health disparities between non-speaking intellectually disabled individuals and non-disabled individuals, the additional communicative barriers they face warrant the worry that such patients are even more marginalised from receiving the healthcare they need.

There are undoubtedly multiple influences on these disparities and multiple needs for improved access to and quality of care for disabled populations. But, in the case of non-speaking intellectual disability, there may also be disparities in participation in patient-centred communication, and thus disparities in the benefits it attempts to promote.

While there is scant research on the specific connection between patient-centred communication and better health outcomes for intellectually disabled patients, research on intellectual disability and quality of life suggests that better communication correlates positively with a higher quality of life.^{22 23} Higher communication support needs and fewer successful communicative acts have been found to negatively affect quality of life across eight standard markers derived from the San Martin Scale, a set of quality of life domains designed specifically for non-speaking intellectually disabled persons.²⁴ These considerations taken together suggest that enabling better communication with non-speaking intellectually disabled patients is a pressing project. In advancing this goal, we begin by exploring three factors that may work together to devalue or dismiss the possibility of communication with non-speaking intellectually disabled populations, hindering the development of better communication practices with these patients.

First, the diagnostic criteria for intellectual disabilities may suggest that efforts at communication are unimportant or unlikely to be successful, influencing the ability of clinicians to perceive the non-speaking intellectually disabled person as a potential communicator. Intellectual disabilities are diagnosed in terms of their gravity, as mild, moderate, severe or profound.²⁵ The more significant forms of intellectual disability cause many restrictions: they render an individual incapable of independent living, prevent them from working a job without constant assistance, bar almost all verbal communication and limit engagement in many complex human activities.²⁵

According to the diagnostic criteria set forth in the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) for profound intellectual disabilities, ‘The individual has very limited understanding of symbolic communication in speech or gesture. He or she may understand some simple instructions or gestures. The individual expresses his or her own desires and emotions largely through nonverbal, non-symbolic communication.’²⁵ In other words, because the diagnoses for more severe forms of intellectual disability include the near inability to communicate via speaking, individuals with significant cognitive impairments who do not speak may unreflectively be taken to be unable to communicate at all. This assumption may then preclude sufficient attempts to communicate with non-speaking intellectually disabled patients, crowding out the possibility of patient-centred communication. Without the exploration of communication abilities in each specific case, care may proceed exclusively through communication with caregivers, leading to surrogate or substituted judgements about care, or clinician best-interest judgements—processes for decision-making that are recognised in other contexts as less ideal than those made by and with the patient themselves.^26–29

Still, diagnoses are helpful and necessary tools, and healthcare professionals rely on them for many things. They point towards standardised paths of care and can aid in a person’s self-understanding. Families and friends can use them to understand both the disabled individual and their own roles as caregivers or support systems. Diagnoses affect resource allocation, insurance coverage, educational or workplace accommodations, and access to services such as Medicare, special education, therapists and in-home caregivers. So, on the one hand, diagnoses are important for access to services and providing good care. But on the other hand, they may gloss over patients who are in fact able to communicate through atypical and difficult-to-recognise ways. Given the utility of diagnoses and the limitations in verbal communication those diagnoses stipulate, it would not be surprising for non-standard communication to be overlooked in care decisions for non-speaking intellectually disabled patients.

Second, diagnostic criteria may combine with preexisting implicit attitudes towards non-speaking intellectually disabled patients. A recent study of over 25 000 clinicians assessed the explicit and implicit attitudes of providers towards disabled patients, finding that even though many clinicians expressed an aversion to ableism, their implicit attitudes showed a favouring of non-disabled patients.³⁰ Another recent survey of over 700 US physicians found that ‘only 40.7% of physicians were very confident about their ability to provide the same quality of care to patients with a disability, just 56.5% strongly agreed that they welcomed patients with disability into their practices, and 18.1% strongly agreed that the healthcare system often treats these patients unfairly’.³¹ While these studies assessed disability in all its forms, patients with intellectual disabilities may be further marginalised, and non-speaking individuals even more so, as clinicians may have less experience with such patients and less training on how to work with them. It is well known that provider attitudes contribute to healthcare access and outcome disparities, in part because of the way that attitudes shape clinical decision-making.³² In the case of non-speaking intellectually disabled patients, such attitudes may contribute to clinical approaches that are insufficiently knowledgeable, curious or celebratory of diverse forms of communication.

Third, master narratives of disability may also contribute to the underexploration of patient-centred communication with non-speaking intellectually disabled patients. Master narratives are the ‘stories found lying about in our culture that serve as summaries of socially shared understandings... consisting of stock plots and readily recognisable character types’.¹¹ For example, master narratives associated with certain types of women and their roles in Western society might inspire the assumption that a white woman walking into a nail salon is going to get a manicure. At the same time, those narratives might inspire the more pernicious assumption that an Asian, Asian-American or Pacific Islander woman walking through those same doors is an employee. Lindemann and Stramondo have argued that these master narratives—these standard archetypes of our narrative identities, or aspects of personal identity used to make sense of our roles in society—play a large role in ableist perceptions of disabled people.^{11 12}

Master narratives of disabled persons include the master narrative of the pitiful disabled person, the inspiring disabled person and even the disabled person better off dead.¹² These narratives are perpetuated by popular culture and by common understandings of disability as a condition to be avoided, despite the testimony of disabled people.^{12 33} In this vein, master narratives of the intellectually disabled person or the non-speaking intellectually disabled person may involve the perception of these individuals as lacking any complex inner life, and by extension, as unable to have the sorts of preferences and desires relevant to informing clinical care. They may perpetuate the view that for such persons, there is simply no autonomy or set of values and preferences to respect, and thus, no point in attempting to uncover them.

When healthcare professionals lack the theoretical tools, personal experiences or institutional training and support to address implicit attitudes and resist master narratives of disability, they may continue to perpetuate an ableist view of disability and the disparities that follow. Rather than explore whether communication might be possible despite or within diagnostic criteria, they may assume it is not, failing to apply generalised principles of patient-centred communication to the non-speaking intellectually disabled patient.

Non-speaking does not entail non-communicating

Pervasive perceptions of intellectual disability may have a negative impact on the communicative efforts and courses of care for this class of patients. However, people with non-speaking intellectual disabilities do have significant levels of interaction with other beings and participation in activities in the world. This has led some to push for a focus on communicative barriers, rather than cognitive deficiencies, working to develop atypical communicative strategies between non-speaking intellectually disabled persons and their intimates.³⁴ Insofar as we are interested in practical considerations for improving medical care for this group, improving communication should take a central role.

Empirical evidence, the testimony of those close to non-speaking intellectually disabled persons, as well as emerging stories from those individuals themselves, frequently highlight heterogeneous forms of communication that could help advance the interests of the individuals involved.^34–38 For example, non-speaking intellectually disabled persons often express preferences or needs gesturally, by indicating a choice between pictures depicting options, by focusing direction of gaze on something desired, by using alphabet or key sign boards on devices, by using sign language, or with non-language based utterances and intonations.³⁵ Together, these modes of communication are called augmentative and alternative communication (AAC).

Notably, speech-language pathologists (SLPs) have also made strides in developing atypical communication methods. For example, some SLPs working with children on the autism spectrum use modelling when teaching alternative methods of communication (eg, arranging a teaching situation in which the learner imitates a target behaviour performed by a model for a learner to imitate)³⁶. Others have had success employing smart speakers (such as Google Home and Alexa) to improve speech intelligibility for intellectually disabled persons.³⁷ However, there is currently vast variation in these strategies and little research on whether they could simply be adopted or straightforwardly modified for broader groups of non-speaking intellectually disabled patients.³⁶ Such strategies also focus on improving the communicative abilities of patients, and to our knowledge, do not focus on improving the communicative strategies employed by clinicians. While research has shown that AAC interventions on the language skills of children with developmental disabilities generally helps them develop communication skills, current research has not yet identified which practices ought to be prioritised in SLP and medical training, whether those practices would readily translate to non-speaking individuals, and whether they would improve patient-centred communication with clinicians. ³⁸

Instead of focusing on a specific set of AAC practices that should be adopted or developed, we might turn instead to the conditions under which optimal AAC practices could be discovered for non-speaking patients. Crucially, we might look to what enables atypical communication between those with profound intellectual disabilities and those close to them, asking whether those conditions might be created in a clinical environment. In what follows, we focus on fostering and maintaining close relationships as a promising place to start, as it might allow atypical communicative acts to be perceived as communication and, in turn, interpreted as holding specific meaning. Time and interpersonal commitment might allow clinicians to recognise attempts at communicative acts, develop individualised AAC methods, attempt creative ways of facilitating communication, and use atypical means to discern the needs, goals, preferences, values and emotions of their non-speaking intellectually disabled intimates. This happens in other contexts, for instance, between caretakers and infants, as caretakers are sometimes able to discern the meaning between different cries or to interpret behaviours such as direction of gaze to make sense of the interests of the infant.

Relatedly, as the following case study suggests, atypical communicative acts may go unnoticed if healthcare providers lack the practical or conceptual resources to develop strong relationships with non-speaking patients. Goode’s groundbreaking work with children in a Rubella ward in the 1960s was an important first step in highlighting the ways in which unconventional forms of communication allowed such children to come to communicate with their caretakers and the conditions which made that possible.³⁹ Goode was interested in unearthing the communicative potential of these significantly disabled children. He focused his efforts on one particular child in the ward, a girl named Christina, who had been institutionalised since the age of six, and another similarly disabled child, Bianca, who had remained home with her family. Goode hypothesised that focusing on individual children might create the opportunity to establish the sort of close interpersonal relationships that would allow pairs of caretakers and non-speaking intellectually disabled individuals to develop effective communicative strategies. This, he hoped, might improve Bianca and Christina’s care, bringing it more effectively in line with their own preferences.

In both cases, he noted unique communicative practices that developed within the fibre of particular relationships. He reported that for Christina and Bianca, communication was available via touch, proprioception, and most significantly via ‘the engagement with their society that their senses and the structures of their societies permitted... through the mutual production and interpretation of ‘indexical expressions”.³⁹ Goode and Christina, as well as Bianca and her parents, were able to communicate with one another in many non-linguistic ways. The reason, Goode argued, that they were able to establish effective communication was in large part due to their close interpersonal relationships.³⁹ Such interpretation of behaviour was not just in terms of deciphering their content, but also in perceiving those acts as communicative acts, and not mere bodily comportments or meaningless gestures.

This does not just occur in research environments. In her preface to philosopher (and mother of a non-speaking, significantly intellectually disabled daughter) Eva Kittay’s monograph Learning from My Daughter: The Value and Care of Disabled Minds, family friend Susan Brison describes coming to know Eva’s daughter, Sesha Kittay.

I knew of Sesha—that she had very significant cognitive and physical disabilities; that she lived with Eva, Jeffrey, their son Leo, and a full-time care provider, Peggy; that she required assistance with just about everything; that she could not talk—but I didn’t know what to expect. How would I introduce myself? Should I shake her hand? Would she be able to clasp mine? What would I say—and in what tone of voice? She was nineteen years old at the time, but with no discernible IQ. Should I talk to her the way I’d talk to an adult? Or to a toddler?

After I said some sort of greeting, Eva and I went for a walk, with Sesha in her stroller, and I sang a Scottish lullaby, ‘Rocking the Cradle,’ not because I thought of Sesha as a baby, but because it’s fun to sing a cappella and it had gotten a good reception when I’d sung it for friends before.

Sesha listened, politely, but I could tell she wasn’t really into it. I started to panic, thinking ‘Oh, no, this isn’t working. She doesn’t like my singing. She doesn’t like me!’ Although she’s able to be entranced by music she’s never heard before, Sesha prefers—especially when encountering a stranger—music that’s familiar, something from her vast repertoire of favourites... Eva suggested we sing something by Elvis Presley, so we knelt down to Sesha’s level and started singing ‘Love me tender, love me sweet, never let me go’and by the time we got to ‘tender,’ Sesha was beaming at me. (I think I had her at ‘Love.’) What had seemed to me to be an unfocused, uncomprehending stare became a delighted, adoring gaze. And then she reached out and hugged me! (She also grabbed my hair and pulled me into her, but I’d been warned about that and quickly extricated myself.) I’ll never know what she was thinking, but I was smitten. From then on, I was never at a loss for things to do with Sesha.⁴⁰

Brison’s openness to relating to Sesha on her own terms and to perceiving communication conveyed in atypical manners allowed the two to develop a now decades-long friendship. ⁴⁰ Brison approached Sesha assuming she was approaching a communicator, not simply a non-speaking intellectually disabled person incapable of conveying meaning of her own. These two accounts suggest that enabling patient-centred communication may begin with creating the relational background against which non-spoken communicative acts can be seen and responded to as meaningful.

Towards patient-centred communication for non-speaking intellectual disabled persons

If individuals with non-speaking intellectual disabilities can communicate in ways that diagnoses, implicit attitudes and master narratives overshadow, then patient-centred communication should constitute good clinical care as it does for other patients. In this section, we suggest four ways that patient-centred communication with non-speaking intellectually disabled patients might be better achieved. Each may inspire actionable items on various levels, for individual providers, healthcare educators and/or institutional initiatives:

1. Enabling and promoting the view that those with non-speaking intellectual disabilities are potential communicators

2. Lengthening appointment times with non-speaking intellectually disabled patients to facilitate interpersonal relationships

3. Conceptually and practically disentangling capacity from communication

4. Appreciating the bidirectional connection between supported decision-making and patient-centred communication with non-speaking intellectually disabled patients and their caretakers

Seeing others as potential communicators

Perhaps the most fundamental way to begin improving clinical relationships with severely to profoundly intellectually disabled patients is to view these individuals as potential communicators, as Goode and Brison did.^{39 40} Overcoming the assumption and the associated attitudes that non-speaking means non-communicating may encourage clinicians to view severely to profoundly intellectually disabled patients as persons with preferences that are worth uncovering. This means recognising and resisting master narratives, becoming aware of implicitly ableist attitudes, and taking care to discover the details of their patients’ communicative abilities and intentions alongside or despite diagnostic criteria. Facilitating this type of positive transition might start by deliberately increasing the visibility of these patients and their experiences to healthcare teams and medical students early in training, and exposing them to the lived experiences of patients and families navigating care including experiences with effective modes of AAC. Simple shifts in psychomotor behaviours, such as encouraging providers to speak directly to and address non-speaking patients (rather than exclusively speaking to the caregivers or guardians typically present in clinical encounters), may foster a shift in perspective, promoting the view that the non-speaking intellectually disabled person is the communicator, as opposed to the (speaking) caretaker.

Lengthening appointments

Second, when working with these patients, healthcare providers committed to the value of patient-centred communication should attempt to form the type of dyadic relationships that enable communication—particularly the sort that mirror the communicative relationships that exist between non-speaking intellectually disabled persons and their intimates. This may require lengthening appointment times with such patients, creating more points of interaction, and thus, more opportunities to relate. Increasing the amount of time providers spend with non-speaking intellectually disabled patients may help develop the tools needed for successful communication. It may also foster closer relationships with caregivers and those close to the patient, increasing trust in and respect for their testimony about the patient’s interests. While clinical expertise should be balanced alongside the testimony of those close to the non-speaking person, the possibility that (1) close intimates may be more successful at interpreting the patient’s communicative acts and (2) those interests may have indeed been communicated to them, may deserve more weight than it is currently given.

Disentangling capacity from communication

Since capacity evaluations require that patients be able to communicate a choice,⁴¹ the harder it is for a choice to be successfully communicated and understood, the harder it is to demonstrate capacity. But of course, it is possible that someone has the cognitive ability to make a choice (eg, they have understood and appreciated the risks and benefits, endorsed a treatment on the basis of reasoning from their values) but lacks the ability to express it to others (eg, they have suffered a stroke that renders them unable to speak, write or move). For such patients, the barrier to demonstrating capacity is the ability to communicate their inner life, not the lack of that inner life. For these reasons, we might expect concerted efforts to enable communication with such patients, since the discovery of those choices and the subsequent determination of capacity depend on it. But for non-speaking intellectually disabled patients, there is a similar possibility of inner life that should impact care. Such patients may have preferences, desires and values that make them who they are and matter for their care, but may be unable to communicate them in readily accessible ways. That inner life should guide their healthcare, even if it is not sufficient to establish capacity or justify informed consent. However, there may be less effort put forth to uncover these preferences and discover alternative modes of communication with these patients, since such discovery may not demonstrate capacity. If providers must already look towards caregivers and supporters for consent, they may be less likely to return to the patient for other communicative efforts.

While efforts to communicate with these patients may not reveal capacity for consent, demonstrating capacity is not the only reason communication is valuable in healthcare. Patient-centred communication is often broadly motivated by its ability to respect persons, uncover the values necessary to promote value-concordant care, and even improve health outcomes. To these ends, providers might separate assessments of patients’ communicative abilities from those aimed at discerning capacity. Practically, this might mean developing a set of guidelines for determining whether atypical modes of communication are present or possible with non-speaking intellectually disabled care seekers, and pursing this determination separately from assessing capacity. In addition to disentangling communicative abilities from those necessary for consent, this might also inform future interactions with the same individual and establish a record of effective communication strategies other providers could employ.

Supported decision-making and communication

For intellectually disabled patients, surrogate decision-making, as opposed to supported-decision making, has traditionally taken precedence.^{28 29 42–45} Surrogate decision-making in these cases often involves a guardian who makes decisions on the intellectually disabled person’s behalf, and who is entrusted to make decisions that are in the best interest of the patient. But in the case of more significant intellectual disabilities, guardianship is often granted by courts and imposed without sufficient proof of an incapacity to make all decisions.^42–45 Because communicative difficulties limit these patients’ abilities to self-advocate, and because of the limited resources of courts, social workers, clinicians and other caretakers, the court-mandated process determining care for non-speaking intellectually disabled persons may proceed quickly and often fail to allocate sufficient resources to access comprehensive data about individuals and their capacities. For these reasons and others, surrogate decision-making has long-faced criticism for its curtailment of the disabled individual’s right to make and participate in healthcare choices.^{29 42–45}

A major voice in American autism advocacy efforts, The Autistic Self Advocacy Network (ASAN), instead backs supported decision-making, as do many other organisations.⁴⁶ Supported decision-making is a way of working with individuals who have preferences and values that should be respected, but who lack the ability either to discern the connections between those preferences and values and the actions required to bring them about or who need additional support in making choices.^42–47 In this way, supported decision-making centres the right of the individual to make decisions that affect them by enlisting ‘supporters’ that work with them. Supporters may be chosen by the individual who requires support and may participate in decision-making by helping individuals identify options, discern their preferences, remember important facts and communicate their choices with others.^{46 47}

In the USA, nine states have passed bills to legally recognise supported decision-making as an alternative to guardianship, conservatorship and surrogate decision-making. ⁴² ASAN has drafted model legislation mirroring existing bills (available at autisticadvocacy.org). Like ASAN, the Center for Public Representation, the American Bar Association, the American Civil Liberties Union, the National Council on Disability, the US Department of Education and the National Disability Rights Network have all taken positions in favour of supported decision-making.⁴² Beyond the USA, supported decision-making aligns with the United Nations Convention on the Rights of Persons with Disabilities, Article 12, which guarantees equal protection before the law, including access to any support required to exercise one’s own legal capacity.^{28 29} Some emerging models emphasise participation in decision-making as a fundamental human right, offering practical resources for training potential and actual supporters in a seven-step process that could be applied to non-speaking patients.^{48 49}

The promotion of supported decision-making over surrogate decision-making dovetails with the promotion of patient-centred communication, both in motivation and practice. Many of the suggested practices for supported decision-making may also enable, promote or constitute AAC and patient-centred communication. For example, the American Civil Liberties Union suggests many forms that supported decision might take, including using ‘plain language materials or information in visual or audio form, extra time to discuss choices, creating lists of pros and cons, role-playing activities to help the person understand choices, bringing a supporter into important appointments to take notes and help the person remember and discuss her options’.⁵⁰ These practices, if used in the clinical encounter with patients and their designated supporters, might help foster the kinds of relationships necessary for developing personalised AAC, and simultaneously promote the view that such patients are potential communicators who simply need additional support to be understood. Similarly, the common use of AAC and the various ways intimates of those with non-speaking intellectual disabilities describe meaningful communication might offer new practices to implement in supported decision-making models, extending it further to non-speaking patients.

Supported decision-making and the extension of patient-centred communication to non-speaking intellectually disabled persons may thereby emerge as symbiotic practices that foster and strengthen one another. On the one hand, engaging in AAC and patient-entered communication efforts might enable supported decision-making by facilitating patient participation in healthcare interactions, increasing the likelihood that providers and caretakers will understand their preferences and values. Through these interactions and communicative efforts, the healthcare provider might learn enough about the non-speaking intellectually disabled patient to become a supporter alongside other caretakers.

On the other hand, engaging in supported decision-making might provide a scaffolding for developing the deeper relationships required for patient-centred communication, promote credence to caretaker or supporter testimony and encourage the disentangling of communication from capacity. In any case, engaging in supported decision-making practices might lead to a deeper respect for the potential of patient-centred communication and the possibility of learning from caretakers how to do it.

Recall the criticism of patient-centred care that its emphasis on care seeker self-determination privileges the autonomous and independent care seeker. We suggested that this was not an unbridgeable gap, but rather an area of opportunity where improved interpersonal practices might provide the additional support required for more dependent patients to receive optimal healthcare. Supported decision-making and the extension of patient-centred communication to those with non-speaking intellectual disabilities are two such practices, and it is our hope that the implementation of the suggestions we have outlined will practically guide healthcare providers as they work to improve care for disabled populations.

Data availability statement

Data sharing not applicable as no datasets generated and/or analysed for this study.