Determining intolerable suffering in the context of advance requests for medical assistance in dying

Key points

• Advance requests for medical assistance in dying (MAiD) present unique challenges, which are exemplified in cases of patients with advanced dementia who meet the criteria for MAiD as defined in their advance request yet appear not to be suffering at all.

• Quebec’s framework for advance requests requires that patients without capacity must meet the clinical manifestations included in their advance request and also experience contemporary suffering to be eligible for MAiD.

• The number of patients who receive MAiD under an advance request will be highly influenced by how contemporary suffering is defined, which is why the determination of contemporary suffering for people who have lost capacity is the subject of rich debate.

• We propose a pragmatic approach by which contemporary suffering would be interpreted by the clinician through the lens of the patient’s previously articulated values.

Since Oct. 30, 2024, physicians and nurse practitioners in Quebec can administer medical assistance in dying (MAiD) under an advance request. The provincial legislation passed in June 2023¹ allows patients with a disease leading to incapacity to draft an advance request for MAiD, which can then be provided after they have lost capacity, provided they meet all eligibility criteria. Although advance requests for MAiD remain illegal in Canada (directives were issued by the Government of Quebec to not prosecute providers^2,3), reflection on advance requests has occurred since MAiD became legal in 2016, and rich debate has been present in bioethics for decades. At the crux of this debate are questions surrounding the evaluation of suffering.

To be eligible for MAiD in Canada, a person must have a grievous and irremediable medical condition that causes them “enduring physical or psychological suffering that is intolerable to them and that cannot be relieved under conditions that they consider acceptable.”⁴ No consensus exists as to what defines intolerable suffering, although attempts have been made to achieve it (Box 1).⁵ While suffering is not defined in Canadian law, the legislation related to MAiD is clear that the requisite suffering must be intolerable to them (i.e., the patient) and cannot be relieved under conditions that they consider acceptable.⁴ In practice, clinicians who deliver MAiD in Canada have relied on the patient to determine whether their suffering qualifies as intolerable.⁶ This has allowed clinical practice to proceed in the absence of a universal consensus on the definition.

Box 1: Defining intolerable suffering .

Following a rigorous concept analysis method, Ortega-Galán and colleagues proposed the following definition for intolerable suffering:

• “Experiencing a situation brought about by physical, psychological, social, spiritual, and/or moral causes that threatens the person’s integrity and triggers a negative, emotional, subjective response in the person experiencing it.

• Experiencing a degree of distress regarded by the person as unbearable, impossible to tolerate with patience, and impossible to bear in the present and in the future, which is associated with events threatening the person’s integrity.

• Wishing for death as the most acceptable alternative or even the only available option.”⁵

However, for advance requests for MAiD in the context of dementia, relying on the patient to determine intolerable suffering poses challenges when the patient loses the cognitive capacity to communicate what they are experiencing. This highlights the need for a clear consensus of what constitutes intolerable suffering. However, even when rigorous definitions are proposed (Box 1), the final call on what constitutes “intolerable” relies on subjective perspective. Whose perspective should determine whether the suffering is truly intolerable? Should this be determined by the person when drafting an advance request for MAiD, or should this be determined from the perspective of a third party, such as a clinician, when the advance request has later prompted consideration for MAiD and the patient has lost decision-making capacity?

This dilemma is often illustrated using Andrew Firlik’s “Margo” case.⁷ Margo was in the advanced stages of Alzheimer disease and appeared to be one of the happiest people Firlik had ever met. Many clinicians may have had experience with such patients. In Quebec, Margo could have drafted a request for MAiD to occur when she reached the advanced stages of dementia. Should Margo receive MAiD, however, if she does not appear to be suffering intolerably?

In practical terms, given that dementia is expected to have an annual incidence of 187 000 new cases in Canada in 2030,⁸ the answer to that question will substantially affect the number of patients who receive MAiD under an advance request. If patients alone determine the nature of intolerable suffering, through a list of objectively observable criteria identified when a patient has capacity, then far more advance requests would be expected to lead to MAiD than in a model where the clinician must also determine whether the patient is suffering intolerably according to a clinical assessment at the time of the evaluation.

What is the international experience with advance requests for MAiD?

In most jurisdictions where MAiD is permitted, because it is restricted to those capable of consent and at the end of life, people living with advanced dementia do not have access to it.⁹ The only relevant exceptions are the Netherlands, Colombia, and Spain.^10–12

Advance requests for MAiD are relatively new in Spain and Colombia; therefore, data are sparse. In the Netherlands, a person can write an advance directive, without the assistance of a health care professional, for the situation in which they are no longer capable of expressing their will regarding euthanasia.¹³ “However, the mere circumstance that the [incapacitated] patient is in the situation described in the advance directive is not a sufficient basis to conclude that the patient is indeed currently suffering unbearably. The physician must always determine in a careful and transparent manner whether the patient is indeed currently suffering unbearably.”¹⁴ In the Netherlands, 8 people who no longer had the capacity to confirm their wishes received euthanasia in accordance with their advance directive in 2023.¹³

Is there a reliable way to determine whether a person with dementia is suffering?

The legal framework in Canada treats assisted dying as a medical intervention. Under this framework, MAiD providers carry the responsibility to determine whether MAiD is indicated at the time of the provision.⁶ For both the Quebec and the Dutch approaches to advance requests for MAiD, the presence of unbearable suffering is at the crux of this determination (Box 2). (Throughout the article, we have primarily used the term “intolerable” as this is the term in the federal Criminal Code. However, when specifically referencing the Quebec context, we have used the term “unbearable” to reflect the wording of Quebec’s provincial legislation.)

Box 2: Advance requests for medical assistance in dying (MAiD) in Quebec .

In Quebec, a person with a diagnosis of a serious and incurable illness leading to incapacity can write an advance request in the presence of a doctor or a nurse practitioner, who confirms that the request is an informed one (e.g., understanding of the nature of the diagnosis, the anticipated course of the illness, and the therapeutic possibilities and their consequences). In the request, the person states the clinical manifestations related to their illness that will constitute the expression of their consent to receive MAiD after they have become incapable of consenting to care. Later in their disease, once the person is incapable of consenting, a physician or a nurse practitioner must conduct an examination to determine if the person

• is exhibiting the clinical manifestations related to their illness that are described in their request, and

• is experiencing enduring and unbearable physical or psychological suffering that cannot be relieved under conditions considered tolerable, based on the information at their disposal and according to their clinical judgment.

The person must meet both these criteria before receiving MAiD under an advance request.¹ There are additional safeguards laid out in Quebec’s legislation; however, for the purposes of this analysis, these criteria are the most pertinent.

Scales and tools exist to evaluate pain in people with advanced dementia. While these might identify suffering in addition to pain, none are designed to provide the thorough evaluation of suffering that would be required as part of an advance request for MAiD. Moreover, studies have noted discrepancies between self-reported pain assessments and external observer judgments in patients with dementia.¹⁵ However, most patients, when they meet the clinical manifestations stated in their advance request, will probably still be able to answer questions and participate in their MAiD assessment. The first step for pain evaluation in people with dementia is a self-report of pain.¹⁶ The same holds for suffering. Most geriatricians in one study even considered that verbal communication with the patient was necessary to assess this suffering, although intolerable suffering could sometimes be assessed in people with advanced dementia through patient expressions, observations, and family input.¹⁷ In their KNMG Guideline on End-of-Life Decisions, the Royal Dutch Medical Association reinforced the importance of observing the patient for an extended period at several times during the day, in a truly multidisciplinary assessment.¹⁸

Equipped with clinical tools and the relevant training and experience, MAiD clinicians could likely determine that a patient is experiencing intolerable suffering when they are able to communicate that they are suffering. The same could be true in some who are not able to self-report suffering. However, the question remains whether a patient who declares that they are not suffering (such as Margo) can be deemed to have met the clinical manifestations as laid out in their advance request for MAiD.

Who actually determines unbearable suffering?

Quebec’s requirement for the MAiD assessor to confirm contemporary suffering when assessing the incapable patient raises a challenging ethical dilemma: Who gets to determine whether the suffering is truly unbearable? At the time of the assessment, the patient is already deemed incapable of the comparative decision-making capacity required for consent to MAiD and therefore cannot provide reliable testimony that their suffering is sufficient to warrant ending their life. The assessor may collect information from the patient that may inform an understanding of the patient’s current experience. However, if the assessor must confirm contemporary suffering, in the end, they determine whether the suffering is truly unbearable enough to warrant MAiD. In doing so, the assessor becomes the agent who determines what constitutes suffering.

Many might argue, however, that the only suffering that matters is the suffering as determined by the patient. Proponents of this line of argumentation propose that the advance request for MAiD should outline the specific objective criteria that would give evidence that the patient is experiencing unbearable suffering. The assessor must merely confirm the presence of these objective criteria (e.g., the clinical manifestations in Quebec) to confirm that this eligibility criterion has been met and not require evidence of contemporary suffering from a third-party perspective.⁹

For many patients, at the time they write their advance request, the prospect of losing abilities they consider critically important would constitute unbearable suffering. However, at the time they lose these abilities months or years later, they might deny that they are currently suffering or appear pleasantly confused to an observer. In this case, should physicians adhere to the patient’s previous claims as to what constitutes suffering?

As a society, we must ask ourselves, should some patients suffer in silence without the possibility of receiving MAiD, or should some receive it even though they may not be suffering at that time?

By requiring the assessor to determine the presence of unbearable suffering, the assessor’s values may be introduced into the decision-making process. Many people would like to simply provide a list of objective criteria that will guarantee their eligibility for MAiD. However, this opens the possibility of many people receiving MAiD who seem to have adapted to their new situation and do not display signs of suffering.

A pragmatic approach to honour patients’ values and concepts of suffering

A patient’s definition of suffering can still play a central role in the process for advance requests for MAiD. Patients can provide an explanation of their values that inform their determination of suffering. Explicit values clarification can guide a person’s decisions in situations of uncertainty.^19,20 This does place a burden on the patient when they are drafting the advance request. However, when reading a well-drafted advance request, the MAiD assessor may gain insight into the patient’s perspective and leverage this in their assessment as regards the existence of contemporary suffering. In this way, the patient’s values can take centre stage again.

While suffering needs to be apparent to an assessor, with a better understanding of the patient’s perspective, they could look at the current incapable patient and interpret some expressions and behaviours as demonstrating the presence of unbearable suffering. Including a person’s values and the rationale behind their decision can assist the MAiD assessor in determining whether the person would want MAiD in the actual circumstances where they find themselves after losing capacity. When working with a person drafting an advance request for MAiD, clinicians should encourage the person to include the rationale and values that underlie their decision to choose their clinical manifestations. Further, to meaningfully assist in the assessment of the presence of contemporary suffering, an advance request should include an explanation of how their values influence the manifestation of suffering (see Table 1 for examples).

Table 1:

Examples of how values could be incorporated into an advance request for medical assistance in dying (MAiD)

Included in the advance request for MAiD		How values would be incorporated into a MAiD assessment
Clinical manifestation	Values influencing the manifestation of suffering	Suffering is present	Suffering is not present
If I can no longer read academic papers, I would want MAiD	I value critical thinking because it stimulates my mind, and if I can no longer read academic papers, I will suffer from boredom.	Later, if the individual has a flat affect and takes no interest in any activities, the clinician may infer that they are suffering from boredom.	Later, if the individual cannot read academic papers, but appears to display an interest in cartoons or children’s books, then the loss of their valued critical thinking has not manifested in suffering as they imagined it would.
If I require assistance for toileting, I would want MAiD	I value dignity, and being dependent on others for toileting would be an unbearable loss of dignity and independence that would cause embarrassment and distress.	Later, if the individual grimaces and cries while being assisted with toileting while appearing content at other times, the clinician can infer they are suffering.	Later, if the individual seems nonfussed about this assistance, then the clinician may infer that the person has accepted this loss of independence.
If I cannot recognize my spouse or children, I would want MAiD	I cannot imagine leading a meaningful life without human connection, and if I cannot recognize my family then I would be lonely and have lost the most important parts of my life.	Later, if the individual remains isolated in their room, calling for people from their past while not recognizing their visitors, the clinician could interpret the calling for names as evidence of suffering from loneliness.	Later, if the person does not recognize their family but develops new relationships and seems to take joy in these, then the clinician may conclude that they are not suffering.

The greatest challenge in drafting any advance directive is that human beings are not good at predicting what they will want in the future.¹⁹ As dementia progresses, people undergo major changes and could be considered fundamentally different people. The thought of losses may pose unbearable suffering to the person drafting the advance request but not be experienced as suffering by the person with advanced dementia. The person may be unable to accurately predict that change when drafting the advance directive and may be unable to express that they have changed after losing capacity. By including information on how the person’s values will influence and manifest their suffering, the clinician may more accurately assess for suffering in an uncertain situation.

Although the current Quebec forms do not allow such information, this could be captured in accompanying clinical notes or a video recording. Later, the MAiD clinician could harness this information when assessing for the presence of contemporary suffering. They could attempt to see the current person, who lacks capacity, through the lens of the values of the person who drafted the advance request. Underlying suffering, which may not be apparent at first glance, may become so after gaining a better appreciation of what suffering meant for that individual. Conversely, after consideration of their values and rationale to pursue MAiD, the clinician may determine that the person is not presently suffering. This deeper understanding of that individual’s suffering may also provide insights into ways to relieve it, which could remove the need for MAiD altogether.

Conclusion

Our proposal for the MAiD assessor to see the person through the lens of the requestor’s values strengthens the role of autonomy in the process. The assessor must confirm suffering is present, but this interpretation should be influenced by the patients’ values, wishes, and goals of care. This is a pragmatic approach that we consider to meet the concerns on both sides of the debate surrounding contemporary suffering.

The inclusion of the values and rationale underlying the request for MAiD can also serve as part of a broader range of advance care planning. Drafting of an advance request should be the occasion to discuss comprehensive advance care planning, including alternative options for comfort care in case MAiD could not be provided.²¹ Hence, MAiD would truly become part of a continuum of care. Incorporating deeper discussions of values and the rationale underpinning a person’s wishes will take time; however, it will enrich the decisions that will allow a better alleviation of suffering for patients.