Medical Aid in Dying: An Overview for Neurologists

More than 3 billion people worldwide have neurologic conditions, which are the leading cause of poor health and disability globally. The overall prevalence of disability, illness, and premature death (known as disability-adjusted life years) caused by neurologic conditions has increased by 18% since 1990.¹ At the World Health Assembly in 2022, member states adopted the Intersectoral Global Action Plan on Epilepsy and Other Neurologic Disorders 2022–2031, with an ambitious plan to address the longstanding neglect of neurologic disorders.¹ Increased life expectancy, an accomplishment of modern health care, has also led to increased incidence of age-related neurologic disorders, such as Alzheimer disease and other dementias, stroke, and parkinsonism.

These and other progressive neurologic disorders are well-known to result in poor quality of life (QoL) for individuals and their families. The World Health Organization defines QoL as “an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns.”² QoL in the context of health involves physical, psychologic, cognitive, social, and environmental factors in addition to senses of autonomy and agency. In one prospective study,³ people with amyotrophic lateral sclerosis (ALS) reported the lowest QoL in all dimensions compared with the general population as well as with an oncologic population. A meta-analysis of QoL in Parkinson disease (PD)⁴ which included 20 studies revealed that compared with healthy controls, people with PD had significantly poorer QoL overall and in most domains, with moderate to large effect sizes. Depression was the strongest contributing factor for QoL in some but not all studies in this meta-analysis. A systematic review of QoL assessments in older adults with dementia showed that the most common factors influencing self-ratings of QoL included depression, functional impairment, and polypharmacy.⁵ In low- and high-grade gliomas, one study found that the prevalence of low health-related QoL did not differ between low- and high-grade gliomas, and low health-related QoL was common, especially during the first months after surgery and in people undergoing adjuvant treatment.⁶

There is ample evidence that neurologic disorders involve various factors that contribute to low QoL among people with neurologic diagnoses compared with healthy individuals, and, in some cases, compared with people with oncologic diagnoses. In addition to their association with high disability and mortality rates, neurologic diseases can have substantial effects on people’s sense of personhood and ability to communicate.⁷ Additional sources of distress that are particularly prevalent in neurologic disease include inexact or lack of staging systems to aid in prognosis, infrequent curative options, disability, complexity and variability of symptoms, potential for cognitive impairment, and mood disturbances.

Neuropalliative Care

Palliative care, as defined by the Center to Advance Palliative Care, is specialized medical care for people with serious illness, focusing on the provision of relief from the symptoms and stress of the illness.⁸ In 1996, the American Academy of Neurology Ethics and Humanities Subcommittee developed a report on palliative care in neurology.⁹ Since then, palliative care has been included within guidelines and standards for many neurologic diseases, and its integration into neurology has resulted in the creation of the subspecialty of neuropalliative care.

Neuropalliative care is dedicated to improving the quality of care for people with neurologic disorders and their families using a palliative care framework. The creation of disease-specific centers of excellence has bolstered the development of multidisciplinary clinics for neurologic diseases, resulting in more holistic care for people with incurable neurologic diseases. The development of neuropalliative care programs has contributed to the emphasis on unmet needs and improvement of QoL for individuals and families. Despite this, unaddressed or refractory suffering can still exist, prompting some individuals to ask about legal means to hasten their death.

The publication of the 1996 American Academy of Neurology report⁹ was a milestone in neurology. The report emphasized that palliative care is appropriate for people with neurologic disease, particularly if they refuse or decide to discontinue life-sustaining treatment, such as ventilation or gastrostomy feeding, and supported the right of individuals to refuse such life-sustaining treatment, stressing that this was distinct from assisted dying.¹⁰ Medical aid in dying (MAiD) had been authorized in the United States in the state of Oregon 2 years previously (in 1994), but there was a gap of 14 years until another US state legalized MAiD (Washington, in 2008). The option to assist individuals with requests for hastened death legally has increased globally since then, and, given the often-low QoL among people with incurable neurologic diseases coupled with the increasing prevalence of such diseases, there is an increasing likelihood that neurologists will encounter such requests.

Clarifying Terms: Desire for Hastened Death, MAiD, and Euthanasia

A desire for hastened death (DHD) is a subjective experience common in people with advanced illness.¹¹ There is a dynamic continuum of what DHD can reflect for individuals, including the underlying reasons, the meanings they hold, as well as the extent to which thoughts of hastened death relate to a readiness for action. For some, DHD is a passive hope for death. For others, it may include exploring options for hastened death or taking explicit actions to realize a hastened death. DHD can reflect many meanings, including a peaceful readiness for and acceptance of death, a response to suffering, or a wish to maintain a sense of control¹² (Table 1). Whereas DHD is a common subjective experience for people with serious illness, the potential realization of such a wish depends on the legal context in which the individual lives. Around the world, several jurisdictions have passed laws allowing individuals to realize a DHD. Laws vary in terms of whether an individual must self-administer a lethal medication or may receive active assistance as well as the conditions for which a individual can seek to hasten their death.

Various terms are used interchangeably when referring to “aid in dying,” but they are unique concepts.

• Medical Aid in Dying (MAiD) is the practice of a terminally ill individual self-administering a lethal medication prescribed by a medical provider to hasten their death.
• Euthanasia refers to lethal medication administered by a medical provider at the individual’s explicit request.¹⁵
• Death with Dignity is a term that originated in Oregon by advocates for MAiD that emphasizes MAiD as a peaceful and dignified end-of-life option for individuals who choose it. Death with Dignity also refers to MAiD state legislation in the United States and a family of organizations that advocate for MAiD worldwide. Table 2 lists international jurisdictions where MAiD or euthanasia are legal as of 2024.

The terms “MAiD” and “euthanasia” are, at times, used interchangeably with “physician-assisted suicide” (PAS). However, some have stressed the importance of differentiating MAiD and euthanasia from PAS, because the word “suicide” can carry negative connotations and stigma. Although such distinctions are complex and nuanced, it has been suggested that in PAS, the primary objective is to end an otherwise open-ended lifespan, whereas in MAiD and some cases of euthanasia, the primary aim is to intentionally hasten a death in a life that is already shortened from terminal illness by weeks to months.¹⁶ In addition, it has been suggested that whereas suicidal behavior implies an intent to harm the self in a context of isolation, MAiD and euthanasia are often experienced as acts of preserving a sense of self and dignity in death within a context of connected relationships with loved ones and clinicians. Methods of suicide often involve acts of self-violence; the methods of MAiD and euthanasia are explicitly intended to provide the least violent and most peaceful death possible. The impact of suicide on families is negative and severe, including high rates of posttraumatic stress disorder and complex grief; the effect of MAiD on family member bereavement is often less severe in comparison to other deaths.¹⁷

Who Is Making These Requests and Why?

Interventions to hasten death should be considered only as a last resort for intolerable suffering despite intensive attempts to palliate the causes.²¹ The 3 most common potential options of last resort include withdrawal or avoidance of life-prolonging measures, voluntary stopping of eating and drinking (VSED), and MAiD, the latter of which is legal only in select locations.

Most research on people pursuing MAiD in the United States comes from the Pacific Northwest (Oregon and Washington), where it was first legalized (in 1994 and 2008, respectively). This portion of the population is not representative of the entire United States, and only recently has more data become available aggregated from all US jurisdictions with MAiD laws.

A recent study²² assessed US MAiD data over a 23-year span and found that most prescription recipients (88.6%) were from non‐Hispanic White individuals, 43.3% of whom were age ≥65. Nearly three‐quarters (71.6%) of prescription recipients had at least some college education, and cancer was the most common diagnosis (69.3%). Neurologic disease comprised 10.9% of prescription recipients. According to the study, individuals with cancer have been overrepresented among MAiD users.²²

The Medical Aid-in-Dying Utilization Report from the American nonprofit organization Compassion & Choices is a compilation of annual reports from all of the authorized jurisdictions that collect data. The most recent data from 2022 reveal that the highest percentages of MAiD users with neurologic conditions were in New Jersey (19.86%) or Colorado (16.78%).²³

Aggregated data from Oregon (1998–2023) showed that of those who died of MAiD, 3.2% had cancer of the central nervous system (CNS), 11% had primary neurologic disease, and the most common diagnosis was ALS (66% of those with neurologic diseases).²⁴ Compiled data from Colorado from 2017 through 2023 reveal that of all MAiD prescriptions written for people with cancer, 4.1% had cancer of the CNS. Of the primary neurologic diseases, the most common diagnosis was ALS (8.3%), followed by PD (3.3%), multiple sclerosis (1%), progressive supranuclear palsy (1.4%), other progressive neurologic disorders (2.1%), and corticobasal degeneration (.5%).²⁵

In the Netherlands, where MAiD and euthanasia are legal, the most frequent neurologic diagnoses associated with requests for hastened death include dementia (in early stages for most cases), followed by PD, multiple sclerosis, and motor neuron disease/ALS. Less frequent causes were stroke, Huntington disease, and other degenerative diseases of the CNS.^26,27

A retrospective chart review of individuals who requested MAiD in British Columbia, Canada, revealed that of the 112 people who had assisted deaths, only 52.7% listed loss of autonomy as one of the top 2 reasons for the request; among individuals in Oregon, it was the most common reason (90.4%).^24,28 Of people with deaths from MAiD, those with malignancy were more bothered by disease-related symptoms (39.0% gave this as the top reason) than were those with neurologic disease (6.8%).²⁸

A qualitative study from the Netherlands interviewed 31 people who had requested hastened death and found that hopelessness is an essential element of unbearable suffering, with subthemes including symptoms (eg, physical, cognitive, psychiatric, effects of medical treatment), decline, loss of self, negative feelings, fears of future suffering, dependency, loss of autonomy, being worn out, loss of social significance, communicative problems, discontent about residential circumstances and quality of care, being a burden, loneliness, biographic aspects, loss of important or pleasurable activities, pointlessness, and a sense that “life is over.”²⁹

A systematic review in 2017 identified 14 studies involving 255 participants with life-threatening illnesses in multiple countries and revealed 5 themes that arose as reasons for DHD:

1. Suffering, which appeared as an overarching theme
2. Reasons for the request (the factors or rational motivations that led to a request being expressed)
3. Meanings of the request (such as a request for help, a way to end suffering, a means to spare others from burden, or a method to preserve self-determination until the end)
4. Functions of the request (as a means of communication and a form of control)
5. Lived experience of a timeline toward dying and death (the sense that time was running out)³⁰

The most common reasons for requesting hastened death in the latest data from Oregon include losing autonomy (91.6%), being less able to engage in activities that make life enjoyable (88.3%), losing dignity (63.8%), and losing control of bodily functions (46.6%).²⁴

A 2019 qualitative study³¹ assessing motivations for requesting hastened death found that the most common reasons among individuals with neurologic diseases (10 participants) included fears of experiencing breathlessness or suffocation, becoming dependent on respirators, becoming dependent on others, or becoming immobile. A more recent synthesis of the global literature³² (2024) reviewing the wish to hasten death among people with life-limiting conditions showed that the determinants of a wish to hasten death (the reasons, meanings, and functions) appear to be broadly similar across different individual populations.

Neurologic conditions carry the potential for loss of mobility, cognitive function, independent breathing and eating, and bowel and bladder control, as well as changes in bodily appearance and behavior. There is often a sense that the illness is intrinsic to the person or a shortcoming rather than an external invasion (as a cancer might be perceived), a distinct ailment that can be excised or “attacked,” or a singular malfunctioning organ (such as end-stage heart failure). As such, individuals with neurologic disease endure distinct threats to personhood and autonomy, often in the face of an uncertain prognosis.

MAiD Protocols

All US jurisdictions with a MAiD law permit clinicians and institutions to opt out of participation. The protocol to complete MAiD in the United States varies slightly from state to state but generally requires 2 medical providers: the prescribing provider and the consulting provider. Some states require a physician to serve in these roles; others allow advanced practice registered nurses the same authority to evaluate an individual and prescribe medication as a physician. New Mexico and Washington have also authorized physician assistants to serve in this role. Typically, the individual must see the prescribing provider twice and make a verbal request each time, separated by a waiting period of a specific number of days. Evidence has shown that many individuals either died or lost decision-making capacity before expiration of the waiting period.³³ As a result, many states (California, Colorado, Hawaii, New Mexico, Oregon, and Washington) have either shortened the waiting period or permitted the waiting period to be waived when the individual is likely to die or lose decision-making capacity imminently.^33-37

The consulting provider’s role is to determine whether the individual qualifies for MAiD under the law. A capacity evaluation by a mental health provider is required if there is a question about the individual’s ability to make the decision, except in Hawaii, where this assessment is mandatory for every person pursuing MAiD. In addition to the required encounters with medical providers, the individual must provide a witnessed written statement acknowledging their understanding and decision.

The eligibility requirements for MAiD include being an adult (≥18 years), being a resident of the state where the protocol is being completed (except in Oregon and Vermont, where there are no longer state residency requirements), having an “incurable and irreversible illness” with a prognosis <6 months as determined by 2 medical providers, having the capacity to make an informed decision, and having the ability to self-administer the medication (by mouth, feeding tube, or rectal tube). Self-administration is defined as an affirmative conscious act without which the individual would not receive the medication.³⁸ In addition, the individual must be acting voluntarily and making an informed decision.

At the completion of the protocol, after sufficient counseling and the provision of informed consent, the prescribing provider can then submit the prescription to a participating compounding pharmacy. Not all who receive the MAiD prescription will ever retrieve it from the pharmacy or ingest it, and the Oregon data reveal that approximately one-third of individuals who have received a prescription will not actually take it.²⁴

Each of the additional countries and jurisdictions where assistance in dying is legal lays out specific criteria for individual eligibility, usually limiting the practice to individuals with terminal or intractable medical conditions or otherwise poor medical prognoses. Details of the aid in dying laws and protocols in other countries can be found on the World Federation of Right to Die Societies website.²⁰

Special Considerations of MAiD Eligibility Requirements in Neurologic Disease

Among the MAiD eligibility criteria that are most potentially problematic for people with neurologic diseases are capacity and ability to self-administer the medication, concerns about both of which could lead individuals to make requests for hastened death much sooner than they would have otherwise.

Whereas the MAiD legislation mandates maintenance of capacity as a required criterion, there is no additional guidance to assist clinicians when mental capacity is unclear, nor does it designate standards for evaluations to achieve reasonable certainty around questions of individual capacity.³⁹ This becomes particularly relevant in the setting of cognitive decline and dementia. Kolva and colleagues³⁹ describe a clinical framework for delineating capacity in the setting of aid in dying, based on a foundation of the MacArthur Competency Assessment Tool, to allow the clinician to ascertain the degree to which an individual’s choice reflects their lived values rather than an underlying pathology that has led to loss of decisional capacity.

In the United States, it is rare for people with dementia to have access to MAiD, because they need to have decisional capacity, be able to self-administer the medication, and have a terminal condition with an expected prognosis of ≤6 months. Some individuals desire MAiD to avoid late-stage dementia, but if they do not have a concurrent terminal diagnosis, they are unlikely to qualify.⁴⁰ An increasing number of people have used VSED to avoid surviving until their dementia is advanced.^40-42 Stopping food and fluids makes death likely in 10 to 14 days, and as such, some hospices qualify individuals as terminally ill on the basis of their VSED rather than on their underlying serious illness.⁴² There has been considerable interest in dementia directives, particularly those that direct VSED.^40,43,44

In addition, mood and anxiety disorders are common in people with neurologic disease, with prevalence estimates ranging from 15% to 35%.⁴⁵ Their co-occurrence can reflect multiple underlying biologic and psychosocial mechanisms with complex bidirectional associations, shared pathophysiology, and common risk factors. Depression and anxiety may precede diagnosis as prodromal features of neurologic disease and/or follow the diagnosis as a psychologic response to neurologic diagnosis and impairments. Regardless of the underlying mechanisms, depression and anxiety in neurologic disease contribute to the decreased QoL and unrelieved suffering that may motivate requests for hastened death.

Many, but not all, statutes specifically require a mental health evaluation by a psychologist or psychiatrist under such circumstances. However, determining the role of psychiatric distress in decision-making through formal capacity assessments is complex and not always clear.⁴⁶ Timely psychologic care and treatment can ease suffering, improve QoL, and reduce the potential psychiatric contributions to medical decision-making throughout the course of neurologic illnesses.⁴⁷

Individuals with motor neuron disease (such as ALS) or other progressive neurodegenerative diseases may lose the required ability to self-administer the medications without assistance: they may be unable to swallow or completely press a syringe plunger to release all the medications into a feeding or rectal tube.⁴⁸ This risk has the potential to cause individuals to feel the need to request assistance with dying sooner than they may have otherwise, for fear that they will lose the opportunity for MAiD due to progression of weakness. As such, these terminally ill individuals with physical disability and the clinicians who care for them may face ethical and legal dilemmas regarding the timing of completing the MAiD protocol.

The Approach to Requests for Hastened Death

In practice, there has traditionally been a degree of reluctance among health care professionals to query about a wish to hasten death, whether for concern that it may be distressing for the patient or because of a perceived lack of training in how to respond if such a request is expressed. However, a recent study found that asking individuals with advanced cancer about a possible wish to hasten death was not upsetting to them, and many of them appreciated the opportunity to discuss this option.^32,49 As such, inquiring about a possible wish to hasten death may unveil sources of suffering that were not previously recognized.

Palliative care clinicians are equipped with interprofessional teams and expert communication skills, but requests to hasten death may be directed at any provider in the patient’s care team. In Spain, where palliative care is not a separate medical specialty and little training is offered to professionals on how to approach DHD, one study found that most requests for assistance in dying (394 of the 458 recorded) were dealt with by general practitioners or neurologists.^32,50

Because of the complexity and vulnerability of the population of individuals who make requests for hastened death, assessing their desire can be challenging. An initial systematic review of instruments for assessing the wish to hasten death published in 2017 evaluated 50 primary studies and identified 7 different measurement instruments. The 2 most widely used were the Desire for Death Rating Scale and the Schedule of Attitudes Toward Hastened Death.⁵¹ Since then, 2 new instruments have been described: The Assessment of the Frequency and Extent of the Desire to Die⁵² and the Wish-to-Die Questionnaire, which was used in a study of individuals with ALS.⁵³

The Schedule of Attitudes Toward Hastened Death asks about anticipated physical and emotional suffering and its relationship to the wish to hasten death.

The Desire for Death Rating Scale is a semi-structured interview that explores whether the individual has ever experienced a desire to die, and, if so, the severity and pervasiveness of that desire.³²

Some comparative studies have considered the extent to which asking about different aspects of DHD may yield different results in terms of the nature of the phenomenon and its prevalence.⁵¹

There are potential timepoints in the trajectory of neurologic illnesses that may trigger queries about hastened death. One study using qualitative semi-structured interviews of 10 participants with neurologic diseases revealed that such inquiries could be triggered by initiation of artificial nutrition by tube, need for respiratory support, development of breathlessness, spasmodic contractions, or immobility.³¹

Primary Palliative Care Skills for Neurologists

An essential component of a palliative care approach is an appreciation of the importance of communication and relationships in caring for people with life-limiting diseases. Early in the illness trajectory, individuals with neurologic illness have an awareness of an anticipated but uncertain future, with considerable challenges not only for themselves but also for their loved ones. This awareness, in combination with the prolonged and uncertain trajectories of many neurologic illnesses, may mean that individuals live for long periods with a hypothetical wish to die: not a wish to die in the present but an awareness of a future when day-to-day living may become intolerable.⁵⁴

The longitudinal relationships that primary neurologists have with patients and families uniquely position them to provide practical anticipatory guidance and support. A patient with a terminal illness expressing a wish to die is common. Such an expression may signal an individual’s direct request for MAiD, but may also be an indirect request for help with unmet needs; a way of expressing values and preferences; a way of talking about end stages of illness, dying, and death; or an attempt to regain a sense of autonomy and control.

Beyond decisions surrounding or the formal pursuit of MAiD, any expression of DHD or request for MAiD is an opportunity to:

• Identify and address unmet needs and sources of suffering
• Have advance care planning conversations
• Foster a relationship based on therapeutic communication and trust to support individuals in medical decision-making
• Introduce and educate about palliative or hospice care

Some individuals who request MAiD are unfamiliar with other options to address suffering, including palliative care, hospice, psychologic care, or pain management programs. They may not realize that hospice enrollment may offer an opportunity to optimize symptoms, obtain anticipatory guidance, provide support to loved ones, and have access to the support of an interdisciplinary team.

Table 3 highlights skills that neurologists can apply when responding to DHD, with some examples of statements to use in such circumstances.

There are many potential scenarios that can present barriers to supporting an individual in their request for hastened death (particularly MAiD). Some of these are considered in Table 4, with possible ways to approach each.

Conclusion

Progressive neurologic conditions are on the rise, and with these comes the potential for worsened QoL in these individual populations. Sometimes, despite supportive health care teams and adequate palliation, individuals with life-limiting neurologic conditions may make requests for hastened death. Around the world, neurologic conditions are the second most common cause for hastened death requests (after cancer). The longitudinal relationships that primary neurologists have with individuals and families uniquely position them to provide practical anticipatory guidance and support.

Regardless of legal jurisdiction, a request for hastened death is an opportunity to identify and address unmet needs and sources of suffering, have advance care planning conversations, and bolster a relationship built on therapeutic communication and trust to support individuals in their medical decision-making. There are potential episodes in the trajectory of neurologic illnesses that may trigger queries about hastened death. Anticipating such discussions can allow neurologists to be prepared, knowledgeable, and adept at exploring and identifying the reasons for such requests, and then devising next steps to address the individual’s concerns and reinforce the therapeutic relationship (Table 3).

If options for hastened death are considered, based on legal jurisdiction or clinician participation, there are unique challenges with requests for MAiD in neurologic conditions, such as prognostic uncertainty; fear of loss of eligibility (due to loss of ability to self-administer or loss of capacity), resulting in the potential to seek MAiD sooner than one would otherwise have done so; and cognitive impairment.

Using primary palliative care skills in conversation can be particularly helpful when having discussions about requests for hastened death. Collaboration with a local palliative care team or program could also be useful in such circumstances. Because of the complexity and vulnerability of the population of individuals with neurologic disease who make requests for hastened death, assessing their DHD and determining next steps can be challenging, but with preparation and collaboration, can strengthen the therapeutic relationship and help better meet their needs.