KeywordsAutism Spectrum Disorder Autism Spectrum Disorder Palliative Care Elderly Adult Group Home
Definition: Palliative Care for Adults with Autism Spectrum Disorders
The oldest cohort of adults with autism spectrum disorders (ASD) is aging, but little has been done to prepare for their end-of-life needs. A review of the literature does not reveal a substantial body of work on end-of-life care for adults with ASD. The purpose of this entry is to introduce caregivers and general clinicians who care for adults with autism to some of the unique challenges of palliative care in this population. It is also intended to familiarize palliative care specialists with some of the unique features of ASD.
There is tremendous variability in an autism spectrum that encompasses nearly every degree of functioning, but some issues in palliative care will be applicable to broad subpopulations of those with ASD. Obstacles related to patient autonomy will include communication challenges, decisional incapacity, and surrogate decision-making. First, some subgroups with ASD will express preferences and clinical guidance in atypical ways, and these communication mismatches can create challenges trying to manage pain and suffering in ways concordant with patients’ wishes. Second, fear of dying, pain, and worry about an uncertain future are discomforting in palliative care, generally, but may be exacerbated by features of autism that can lend themselves to a patients’ isolation, confusion, or incomplete comprehension of what is going on around them. Broader issues will arise including the intertwined questions of decision-making capacity and surrogate decision-making. Some elderly adults with ASD will have full capacity to communicate long-term care plans, sign advance directives, and designate potential surrogates, while others will be able to do so only in a limited or attenuated manner. In these cases, surrogates will play integral roles in decision-making by augmenting and extending patients’ self-determination; they will frequently be family members who have provided care for many years and now face new tasks that include shouldering the burden of surrogate decision-making at the end of life.
These challenges, and many further unfamiliar ones, will arise when elderly adults with autism enter palliative care settings. When these challenges do occur, strong psychosocial support and collaboration between caregivers, patients, and families will increase quality of life by ascertaining the preferences and goals of care of adults with ASD, thereby enhancing autonomy.
Palliative care aims to improve quality of life for patients with serious or terminal illness and focuses on family-centered care designed to relieve suffering and increase comfort. Palliative care originated in the modern hospice movement pioneered in 1967 by Dame Cicely Saunders (Fins 2006) and is initiated when “cure is no longer the prevailing goal of care” (Fins 2006). Comprehensive strategies for palliative care cover multiple domains of care, including physical, emotional, social, intellectual, and cultural needs. These domains can be addressed by interdisciplinary care teams that provide multidimensional management of symptoms; social, spiritual, cultural, and psychological support as ways of providing comfort and relief; and clear channels of communication between providers and families in order to provide support, acknowledge sensitive legal and regulatory issues, and resolve complex ethical challenges (The National Consensus Project on Quality Palliative Care 2013).
The domains of palliative care can be weighted differently. Some strategies of care “focus more comprehensively on the technical aspects of end-of-life care, such as drug dosing or the management of common symptomology” (Fins 2006). Other models emphasize the humanistic approach: a person-centered, shared-understanding model in which patients and physicians collaborate to understand disease trajectory and articulate goals about quality of life, intentions of care, and resolution of end-of-life issues (Fins 2006; Friedman et al. 2010). Humanistic models of palliative care aim to increase quality of life while keeping patient autonomy in the foreground.
As palliative care involves numerous decisions by patients and families, palliative care organizations seek to enhance access to information and choice. Short-term decisions include treatment preferences such as specifics of comfort care and pain management, location of care (e.g., hospital, hospice, or a patient’s home), and which family members are wanted close at hand. Longer-term decisions dictate preferences that reflect the overarching values of the patient and how they want those values to guide or shape critical moments at the end of life. These include passive approaches to care, such as withdrawal of artificial nutrition and signing “Do Not Resuscitate” (DNR) forms, and active strategies including aggressive interventional treatment. Ideally, these decisions develop through ongoing conversations among patients, families, and providers, in which values are articulated and expectations refined. After these conversations are completed, important procedures codify preferences into legally binding terms and documents, such as advance care plans that designate proxy decision-makers and treatment preferences in the event of decisional incapacity.
Adults with Autism Spectrum Disorders
Autism is a persistent developmental disorder with impairments in two broad categories: social communication and social interaction. Often diagnosed early in life, individuals typically exhibit restricted, repetitive patterns of behavior, interests, or activities (American Psychiatric Association 2013).
First identified in 1943 by pediatric psychiatrist Leo Kanner (1968), public awareness of autism increased during the 1950s and 1960s through now-discredited theories about “refrigerator mothers” as a cause, and diagnostic recognition expanded further with formal codification of autism in the 1980 publication of the DSM-III. Given this timeline, the oldest adults to receive a formal diagnosis of autism are in their late 50s, 60s, and early 70s. In many cases they have lived most of their lives with family or in supervised group homes.
Recent focus has been on early detection and early intervention in autism. Presently, children are diagnosed on average several years earlier than their counterparts 60 years ago, which allows for a greater amount of early intensive behavioral therapy during critical developmental periods (Howlin et al. 2014). However, this focus on early intervention has led to inadvertent neglect of adult and lifespan perspectives of older individuals with ASD: “We know next to nothing about people aging with ASD. There are…no data on the quality of life of the elderly with ASD” (Fombonne 2012). Emphasis on childhood autism has left gaps in care and services for adults with ASD.
Elderly adults with autism will face challenges that are extensions of childhood difficulties, as well as obstacles that are novel to old age. First, the core features of classical childhood autism extend into and take on new forms during adulthood. Children with autism who have modest or higher IQ (≥70) in childhood remain relatively cognitively stable into adulthood (Seltzer et al. 2004). Some adults with autism are able to improve in their social and verbal skills and attain more stable social roles throughout adulthood, but this has been proposed to occur in a “splinter” fashion, with progress in discrete skills rather than improvement across the board (Seltzer and Shattuck 2003). Second, social interaction and communication deficits tend to lead to difficulties later in life in employment, independent living, and relationships and trouble with law enforcement for adolescents and adults with ASD(Volkmar et al. 2014), many of whom present with disadvantaged physical or mental health and overall quality of life as a result (Howlin and Moss 2012). As a result, 60–75% of individuals with autism have “poor” or “very poor” outcomes as adults (Seltzer et al. 2004; Howlin et al. 2014), but these tendencies vary based on the degree of early impairment, family support, and access to services. Trends in outcomes are likely more acute, i.e., a downward shift in function, in older generations of adults with ASD who have missed key therapeutic interventions that are now standard practice.
As diagnostic recognition has improved over time, the number of adults formally diagnosed with autism is expected to grow progressively larger. However, the prevalence of formal diagnoses likely underestimates the true rate of autism. The first comprehensive study to include undiagnosed adults found a relatively static rate of autism over time in the UK: 1.1% of 16- to 44-year-olds, 0.9% of 45- to 74-year-olds, and 0.8% of those 75-year-olds, roughly the same prevalence as the childhood population (Brugha et al. 2011). In many cases undiagnosed individuals with ASD were socially disadvantaged and unrecognized and did not access services.
Palliative Care Plans and Challenges (Current Knowledge)
The first group of adults with a formal diagnosis of autism is nearing the age when they might receive end-of-life palliative care. Features of autism vary in presentation among individuals, so it is imperative to distinguish between individuals who are capable of articulating their vision for care procedures, those who will need support to do so, and those who might be cognitively incapable of doing so altogether. Providers should respond differently to these groups, tailoring their care, presence, and interactions to enhance self-determination and the quality of life of adults with ASD receiving palliative care.
As palliative care is a collaborative endeavor, providers can draw on various resources. The adult patient – the focus of care – has wishes, needs, and goals of care to be articulated. Family members and caregivers can be consulted as doing so can enhance the patient’s communicative capacity and ability to make informed choices. There are also legal and ethical perspectives to take into account. It is in the spirit of palliative care to collaboratively address obstacles through open communication that involves all relevant parties in processes of decision-making and end-of-life choice.
Palliative care providers may face many challenges when caring for elderly adults with ASD, including:
Communication is a prerequisite for choice and preference setting in palliative contexts. However, some adults with autism are unable to clearly articulate preferences and overarching values, which is an obstacle for palliative care personnel seeking to provide care in accordance with patients’ wishes.
There is wide variation in verbal acumen of adults with ASD, reflecting the full breadth of the autism spectrum. By adulthood, many of those with partially or fully nonverbal autism will have identified noncanonical strategies for augmenting dialectical communication. Helpful strategies may include augmentative and alternative communication technologies (AAT) (Beukelman and Mirenda 2013), sign languages, physical or behavioral communication, facilitated communication, and visual communication such as PECS (Picture Exchange Communication System) (Dawson and Burner 2011). These mediums are used at different rates: 40% of people with ASD use sign language, 26% use a high-tech assistive device (e.g., voice output system), 40% use a low-tech assistive device (e.g., Picture Exchange Communication System), and 95% reportedly use gestures (many individuals with ASD use more than one mode of assistive communication) (Gotham et al. 2015). These strategies may be adapted for a palliative care context; for example, social stories and books are used to communicate about the deaths of other people (The National Autistic Society: Death, Bereavement, and Autism Spectrum Disorders 2015), often older family members, but have not yet been extended to palliative care. Alternative communication techniques will play a crucial role in avoiding communication mismatch between palliative care providers and patients with ASD.
Understanding wishes conveyed directly by a patient is key, but in some cases adults with ASD may rely on caregivers who can assist in conveying a message. These intermediaries will often be able to aid in or facilitate the patient’s own communication. Familiarity with alternative communication can help palliative care providers navigate complex clinical dynamics and ascertain the consent, choices, and preferences of elderly adults with autism, regardless of their verbal status.
Sensory Integration and Experience of Pain
Atypical sensory processing is a common feature of autism. It involves perception of tactile, auditory, visual, or painful stimuli as more or less noxious than their true intensity. Hyposensitivity to pain is troublesome in general medical contexts due to underreporting of illness, but hypersensitivity to pain is particularly worrisome as a primary goal of palliative care is the relief of terminal pain. Atypical processing of pain can severely affect quality of life and precipitate anxiety or agitation. In cases of pain hypersensitivity, there may be a need to adjust pharmacotherapy accordingly.
However, in cases of pain hypersensitivity, some adults with ASD will express desired strategies for pain management, while others will have difficulty with effective communication of internal experience. In the latter case, providers can rely on nonverbal signs of pain and distress. These may include unexplained rises in heart rate and blood pressure or pupillary dilation, all signs of sympathetic overdrive. There are also behavioral observation techniques for assessing pain, such as the Critical Care Pain Observational Tool (Pun and Dunn 2007), which measures behaviors including muscle rigidity, body movements, and facial expressions, and the Adult Nonverbal Pain Scale (Rothman 2006), which can be used to assess pain and anxiety in critically ill, nonverbal adults by observing signs such as “stimming” or signs of overstimulation that can include grimacing, moaning, shaking, and hunched walking (Dell 2008). In short, effective terminal pain management for adults with ASD may necessitate awareness of nonverbal and physiological cues, nondialectical communication of discomfort, and potentially heightened importance placed on pain relief.
By communicating, patients can engage in the clinical decision-making process; however, communication alone is insufficient for robust choice. In some cases of ASD, beyond questions of communication and patient engagement, there will be additional concerns about the durability of the decisional process.
Decisional Capacity and Choice
Decisional capacity is the ability one has to make decisions for oneself. Insofar as decision-making relies on functional abilities that can be pathologically affected by certain disorders, in many cases it will be important to evaluate whether a patient has robust decisional capacity. Modern capacity evaluations focus on functional abilities-based criteria for capacity, typically the abilities to understand information relevant to a decision, appreciate the information (i.e., apply it to one’s own situation), reason with the information, and communicate a stable choice (Appelbaum and Grisso 1988). Other models of capacity assessment focus on whether the patient’s decision has been made in light of personal beliefs and values (Fins 2006).
Several features of decisional capacity are important to note. First, the threshold for capacity can vary depending on the decision at hand. The “sliding scale” model of capacity articulates a threshold that varies depending on the consequences of a decision (Drane 1984). Thus, patients may be able to make some decisions but lack capacity for other, riskier ones. For example, a patient’s decision to sign a “Do Not Resuscitate” order should be subject to a stringent evaluation and a high capacity bar, but that same patients’ preference for some hospital foods over others needs not be questioned in the same way. A second, related point is that capacity “is not a global determination of cognitive abilities” (Fins 2006), rather, it is assessed for each specific decision in question. Thus, incapacity to make one highly complex medical decision should not be equated with incapacity for all decisions.
Some adults with ASD will meet functional capacity criteria to make weighty medical decisions, while others will not. Particularly those with Asperger’s, high IQ, or higher-functioning autism will have capacity to make medical decisions for themselves (Volkmar et al. 2005). Others with lower-functioning autism will lack decisional capacity, due in large part to comorbidity between autism and intellectual disability that occurs 17–70% of the time (Matson and Shoemaker 2009). However, even in cases of adults with autism who have severe intellectual disability such as mental retardation (MR), it will be important to evaluate patients and decisions on a case-by-case basis. “Most adults with mild and no mental retardation, and almost half of adults with moderate MR are able to make and justify treatment choices and fully or partially understand treatment information” (Cea and Fisher 2003). Additionally, 50% of individuals with mild MR, and 18 % with moderate MR, are able to “partially appreciate relevance of treatment choice to [their] situation and weigh treatment risks against benefit” (Cea and Fisher 2003).
Communicating with patients about their choices makes end-of-life care better. In palliative care settings, adults with autism should be presented with a full range of decisions including pain management, location of palliative care, and questions of comfort. As there is vast heterogeneity in ASD, no categorical state of capacity or incapacity will be found in elderly adults with ASD in making palliative care decisions. Some adults with ASD will meet the threshold to set preferences about comfort care, but not to make a broader decision to withdraw life-sustaining nutrition. One method of ascertaining a choice if capacity is limited is to present possible options sequentially, such as possible locations of care, then allowing the individual to choose based on experience. When adults with autism have limited decisional capacity, communication between providers, the patient, family members, and surrogates will determine which elements of a care plan are best decided by the individual patient and which aspects should be decided by surrogates.
Adults with autism face obstacles to self-determination during palliative care. Many will have their decisions questioned or refused due to provider belief that the patient lacks capacity (Institute of Medicine 2006). A recent study of a Dutch residential facility retrospectively examined the files of 47 individuals with ID who had died during a determined span of time. Twenty-seven of these individuals had an end-of-life decision made about their care, and families were involved in only half of those decisions (Wagemans et al. 2010). There was also “no evidence in the notes that any of the people with IDs was asked for his or her own opinion in taking an end-of-life decision.” Palliative care providers, caretakers, and family members must ensure that the preferences of adults with autism are taken into account. Another challenge is the possibility of decisional conflict, which can arise among the patient, providers, and surrogates, when a patient with known limited capacity articulates a choice, but it is unclear whether they have capacity to make this particular decision. Finally, there may be disagreement among various proxies, each with legitimate claims to surrogacy. If this occurs, providers should seek out the legal surrogate. If none exists, a clinical ethics consult may be requested.
Surrogates and healthcare proxies may assume decisional responsibility for a patient who has been determined to have limited capacity or who cannot make independent judgments (Fins 2006). The goal of shared decision-making among surrogates and palliative care teams is to reach decisions balancing the patients’ interests, medical needs, and goals of care. Decisions that surrogates may be called on to make include cessation of treatment and other difficult, emotionally demanding decisions. Since surrogate decision-making is not a simple task, guidelines (Fins 2006) aid proxy decision-makers in deciding on behalf of others: first, surrogates should make decisions in line with the “expressed wishes” of the patient, i.e., what the patient said they would want if they were ever in this scenario. If no wishes have been shared on the subject, it is appropriate to use a “substituted judgment” standard, i.e., how the patient “would have decided” if they were able to do so, which a proxy can determine in light of a patient’s preferences and values. Finally, in the “absence of information” on the patient’s desires, a decision can be made that is in the patients’ “best interest” (Fins 2006). Accurate decision-making on behalf of patients is a mechanism that helps patients extend their self-determination and autonomy in medical contexts.
Surrogate decision-makers for adults with autism will face challenges during palliative care. First, many adults with autism never express choices about palliative care, while others might do so but with suspect capacity. In these cases, a substituted judgment standard is ideal. Second, parents who have served as long-term caregivers are often best suited for surrogacy, but may no longer be living. In some of these cases, there will be court-appointed guardians who may be unfamiliar with the patient. Such guardians should consider that, under a “best interests” standard, the relative weighting of values and interests is unique for some adults with ASD. Even in cases of a long-standing surrogate who knows the patient well, deciding for others is a difficult, complex task, and others may have useful input. Family members, caretakers, guardians, group home staff, physicians, therapists, friends, and teachers may have extensive knowledge of the patient’s preferences and can assist in the decision-making process. Finally, when an adult with autism enters palliative care, surrogates may want to discuss potential issues with the care team and draw up plans in advance, in order to facilitate decision-making during distressing, acute scenarios (King et al. 2004).
There are also legal hurdles in surrogate decision-making. Conflicting laws, practices, and principles can make it difficult to determine who should be making medical decisions (King et al. 2004). Family members and guardians of adults who have autism should always choose durable and valid healthcare proxies and codify these choices in proper documentation that is easily available.
Avoiding Futile Care
Not all medical care is good – there are harms of futile care. Medical futility can harm patients by causing unnecessary suffering with no possibility of direct benefit, injure the emotional state of a family, exhaust hospital resources, and put physicians in the uncomfortable position of having to provide care they know is ineffective (Fins 2006). Ideally, planning for futility questions takes place before futility questions actually arise and involves conversations between families, palliative care teams, and the patient.
Futile care decisions involving adults with autism raise at least two major considerations. One concern is that in the case of adults with autism, palliative care providers might worry about stigma of deciding that care is futile for vulnerable individuals, which can therefore lead to overtreatment and greater suffering. A second concern is that there may be an implicit presumption that adults with ASD and cognitive disabilities cannot participate at all in medical decisions, which would rob them of a voice. Obtaining assent and respecting dissent are both important when a patient has less-than-robust capacity. In particular, if pain sensitivity is a known concern for an adult with autism, assent and dissent may be highly informative as to treatment preferences and futile care. However, relying heavily on proxies to make decisions involving assent, dissent, and medical futility can place a severe burden on surrogates. Balancing these two considerations will require palliative care providers, families, and patients with ASD to draw up in advance ways of determining the point at which care might be futile for an individual patient.
Unique Palliative Care Comorbidities
Many unique challenges can arise during palliative care for adults with autism. First, several conditions frequently comorbid with adult autism, including anxiety (Bradley et al. 2004), depression (Ghaziuddin et al. 2002), ADHD, and epilepsy (Bailey et al. 1998), can create auxiliary complications. Some adults with autism rely on sameness and can be resistant to change, engendering anxiety as hospice is an unfamiliar setting, and as novelties such as an array of unfamiliar symptoms, tests, pains, and confusion are associated with many end-of-life scenarios. Anxiety can be mitigated in many ways, such as encouraging adults with autism to participate in the decision-making process regarding location of palliative care. There are also pharmacologic and nonpharmacologic techniques, including distraction, favorite rituals or practices, medication, art, and relaxation, that can help reduce anxiety and physical or emotional distress. Second, there is a risk that natural, somatic diseases go unreported among adults with nonverbal autism who are receiving palliative care. Communication deficits can make medical care more difficult or lead to diagnostic delay of various treatable diseases (Sea 2008). Adults with ASD may have increased or decreased internal sensitivity in addition to sensitivity to pain. These factors can make it difficult to assess and treat the secondary health status of adults with autism, especially those who are receiving palliative care focused on a primary condition.
Finally, adults with autism – particularly severe or nonverbal ASD – face a heightened risk that their own condition or care will be talked about in their presence by care providers, with the assumption that they do not understand the ongoing discussion. This would negatively affect the quality of life at its end, diminish the overall quality of care received by the patient, and violate principles of confidentiality and respect for persons.
Bereavement can come in many forms. Most elderly adults with autism will have experience with some form of death and may feel anticipatory grief, before death. For an adult with autism, anticipatory grief may manifest in typical or atypical ways depending on the level of understanding of death and emotional engagement. There might be preconceived notions on the part of the patient of what a good death can or should look like. Palliative care providers should discuss and dissect these expectations, especially if they are inappropriately anticipated. Furthermore, many adults with autism live in group homes. If palliative care takes place in a group home, there is the possibility of grief or bereavement affecting other members of the group home, particularly those who observe the progression of care. Finally, in all cases, but perhaps most acutely those in which surrogates make decisions about futile care, providers should expect surrogate bereavement.
As the oldest adults with autism spectrum diagnoses begin to reach the natural end of life and receive palliative care, these adults, their families and surrogates, and healthcare providers will face novel challenges that require flexibility in care and communication. Future research should focus on understanding these challenges, including barriers to decisional capacity, how patients’ capacity can be augmented to increase autonomy, and which issues most frequently arise during surrogate decision-making. What preferences do elderly adults with ASD express about the end of life, how are those preferences conveyed, and, most importantly, are they followed? Furthermore, how are the decisions surrogates face in palliative care substantively, emotionally, and psychologically different than the medical decisions they make for adults with autism earlier in life? Creative research programs are currently lacking and might conceivably be championed by national advocacy programs.
While palliative care has evolved profoundly as a field, further preparation will help care for adults with ASD at the end of their lives. Broad ethical issues can arise in palliative care including respecting preferences ascertained through consent, assent, or dissent so as to avoid under- or overaggressive treatment. Parents of children and adolescents with autism commonly express worry about an uncertain future, particularly when they are no longer able to act as their child’s surrogates. It is critical that parents or guardians, and adults with autism, take the time to have conversations during which values, preferences, and choices about the end of life are ascertained and formally codified to ensure legal authority. This will allow the palliative medical practice to bring its expertise in providing comfort to bear in a way that respects and honors the autonomy, capacity, and choices of an often-vulnerable population (Fins and Pohl 2015).
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