What are caregivers’ beliefs and opinions about MAiD?

Polling data can capture lay public opinions about assisted dying, but these attitudes may differ from those held by individuals actually caring for a family member with a life-threatening illness. The opinions provided by caregivers regarding MAiD in research studies, however, may be affected significantly by the legal status of MAiD in their setting. Three studies conducted by Ganzini and colleagues5–7 in Oregon, a jurisdiction where MAiD is legal, have explored the opinions of family caregivers about MAiD for their loved ones. In the first study, 98 individuals with advanced cancer and their family members were asked about their attitudes towards MAiD. Family members in this study were asked to indicate their overall position on the legalisation of MAiD, predict their loved one’s position, and predict their own position if their loved one decided to pursue MAiD.5 Results indicated that 51% of family members supported legalisation and would support the patient’s request for MAiD, 30% opposed legalisation and would oppose the patient’s decision, and 19% were undecided. Family member support for a potential MAiD request was predicted by low religiosity as well as family member concern for the impact of the patient’s illness on their own health. Interestingly, a comparison between patient and family member views demonstrated that although family members were able to accurately indicate the patientl view on the legalisation of MAiD, family members were not accurate in predicting whether their loved one would pursue MAiD (Spearman’s r=0.22, p=0.03), rating patient interest in receiving a lethal prescription higher (mean rating of 1.3 on a 10-point scale, with higher numbers indicating more interest) than the patient (mean rating of 1.1). Additionally, there was low agreement between patients and family members regarding whether a MAiD discussion had taken place, with 19 family members stating they had discussed MAiD while the patients disagreed, and 11 patients stating they had discussed MAiD while their family members disagreed.

Similar findings were reported in a study focusing on family caregivers of patients with amyotrophic lateral sclerosis (ALS).6 In that study, out of 91 family caregivers, 62% noted that they would support their loved one’s decision for assisted death and 76% were able to predict the patient’s position on MAiD. Caregiver endorsement of MAiD for their loved ones in this study was found to be associated with their level of religiosity, but unrelated to the following variables: caregiver social support, emotional distress, economic burden, and their perception of patientpain, suffering and quality of life.

Lastly, in a study of 83 bereaved caregivers of patients with a variety of life-limiting illnesses who made explicit requests for MAiD, caregivers were asked to rate the importance of 28 potential reasons that their loved one requested this intervention.7 The most important reasons that emerged from the caregiver perspective were the patient’s wish to control the circumstances of death, and the patient’s fears about future loss of dignity, independence, quality of life, and self-care ability, as well as the wish to die at home. The least important reasons that emerged from the caregiver perspective were reasons related to the patient’s level of suffering, such as lack of social support, depressed mood, or confusion.

Other studies have considered the opinions of family caregivers regarding MAiD for their loved ones in jurisdictions where MAiD is illegal. Emmanuel and colleagues2 reported on a large study of 893 family caregivers of terminally ill patients in the USA which explored caregiver views regarding hypothetical MAiD scenarios for their loved ones. The study found that 58.7% of caregivers supported MAiD for patients in pain and almost 30% supported it in a scenario where the patients believed they were a burden. Similar to Ganzini et al’s study in Oregon,5 support for MAiD was predicted by low religiosity and by the perceived impact of the patient’s illness on their well-being. However, less than 20% of those who supported MAiD indicated that they would be willing to personally help their loved one end their life.2 While support for MAiD was relatively high among family caregivers, this attitude was not reflected in their willingness to be involved in the process. This difference may be understandable given that the study was conducted in a setting where MAiD was not a legal option for their loved ones to pursue.

A study conducted in Japan by Okishiro and colleagues8 demonstrated similar MAiD endorsement rates in family caregivers. Of the 429 bereaved family members of palliative patients with cancer who were asked about their beliefs surrounding MAiD, 45% supported legalisation, 38% supported physicians’ discretion regarding MAiD as an intervention, 6% would have liked it to remain illegal, and 12% did not respond. This may imply that, among those who had expereinced the death of a loved one, over half would have supported MAiD for their loved one. An analysis of demographic factors demonstrated that caregiver age under 60 and a non-spouse status (eg, child) predicted endorsement of MAiD. The relationship between younger age and MAiD endorsement may reflect the fact that younger individuals assign greater importance to patient autonomy relative to older individuals, or may be a by-product of the difference between the attitudes of spouse caregivers versus child caregivers.

Two qualitative studies provide deeper insight into the complexity of family caregiver views on MAiD. In the UK where MAiD is currently not legal, Tomlinson and colleagues9 conducted semistructured interviews regarding MAiD with 16 bereaved caregivers of patients with dementia and found that 13 of 16 bereaved caregivers supported the right of these patients to access MAiD; however, conflicting themes emerged. The theme of right to die emerged, with some caregivers noting that it is a personal choice (“I think it is always very much up to the individual themselves. It is their body”) and that they would want the option of assisted dying for themselves if it got to that point (“I would want the ability to end it because that would give me some relaxation that if I got to the stage where I can’t bear it I can end it painlessly. You know say my goodbyes and go to sleep”). In contrast, a theme of problems with ending life emerged, in which bereaved caregivers discussed reasons that they would not consider MAiD for their loved one who suffered from dementia, namely that they were “still a person” and that the illness is “not all bad.”A minority endorsed that “you don’t murder people” and “we can’t choose the way we die,” which directly oppose the notion of medically assisted death. One participant noted that “it is not just the person that is killed, but their family and people that have witnessed it are affected.” This quote encapsulates the notion that it is not only the individual that is impacted by this intervention, but rather the entire family, and that these multiple perspectives may be taken into consideration and weighed as decisions are made.

In a qualitative study by Gamondi and colleagues10 in Switzerland, where assisted dying is legally available, 11 family caregivers of patients with cancer who died by MAiD were interviewed. The study highlighted the moral dilemmas that the family caregivers faced before MAiD was performed and in the aftermath of bereavement. Most caregivers described feeling as though they were breaking a cultural taboo or the ‘thou shall not kill’ rule by helping their loved ones with assisted dying requests, and feared consequent blame and social stigma. For a number of caregivers, these dilemmas were resolved through considering the value of respecting the patient’s autonomy, the degree of the patient’s suffering, the knowledge that the patient’s death was inevitable and imminent, the value of keeping their promise to the patient, and the idea that assisted suicide was a better alternative to unassisted suicide if the patient was not able to seek out the legal option. However, a few respondents reported continuing to be concerned with these issues years after the patient’s death.

It is evident that family caregivers of patients considering MAiD may be faced with ethical and moral dilemmas in the face of competing values, and that views regarding a hypothetical MAiD request for a loved one with a terminal illness may not align with opinions formed in the face of the reality of MAiD. Their attitudes are likely informed by a complex interplay of individual, family, societal and legal factors, and further research should continue to explore the various determinants of caregiver beliefs and attitudes.

How does the process of MAiD affect caregivers?

The MAiD experience may differ depending on a variety of factors,such as the disease process, the support system, intervention eligibility criteria, the nature of the intervention, setting, and other factors. During the MAiD decision-making process in the Swiss study conducted by Gamondi and colleagues,10 two types of caregiver involvement were noted: active and passive. In active involvement, caregivers shared common values with the patient and proposed assisted death, or were active in helping the patient through the process of the intervention. In contrast, those with passive involvement often encountered a personal dilemma with MAiD, which could either foster better discussion of the pros/cons of the intervention or could isolate the caregivers from the decision-making process and increase their emotional distress. The study suggests that the nature of caregiver involvement may play an integral role in how the caregiver perceives the MAiD process and perhaps its impact on their bereavement, as those with passive involvement tended to struggle more with moral dilemmas post-death.

In a more recent study, also conducted in Switzerland, Gamondi and colleagues11 interviewed 28 family caregivers of patients who died by MAiD about their involvement in the MAiD process. The study outlined five phases of the assisted dying process, including contemplation, gaining acceptance, gaining permission, organisation, and aftermath. The contemplation phase is defined by discussing assisted suicide with family members, followed by gaining acceptance from family members and exploring professional opinions. After this, individuals must gain permission from a medical professional and then organise the intervention (eg, lethal injection, postdeath rituals and so on). The aftermath phase involves disclosure of the assisted suicide to close others after the loved one’s passing. The study noted that family members may have either a passive or active involvement in all stages of this process, and that each type of involvement created unique burdens for family caregivers. This study highlights that clinicians must consider the involvement of caregivers in the process, and this attention may help to reduce feelings of isolation and adverse outcomes after patient death.

The process of MAiD may also create relational strain between those who are seeking MAiD and their family members. In a qualitative study conducted in the Netherlands by Snijdewind and colleagues,12 22 bereaved family caregivers and 28 physicians of patients with a variety of illnesses who died by assisted suicide were interviewed about the MAiD process and were asked about any complexities or challenges that they experienced throughout it. The authors identified two relational complexities, namely the lack of time for all involved (the patient, the caregiver,and the physician) to mutually agree and process the decision to pursue MAiD, and situations where the caregivers were not able to appreciate the severity of the patient’s suffering, and thus failed to empathise and accept the patient’s assisted death requests. This analysis demonstrates the importance of open communication between patients, clinicians, and caregivers throughout the MAiD decision-making process. However, studies that compared patients’ and caregivers’ perceptions about such discussions are typically low in agreement on whether they occurred.5 10 This highlights the possible disconnect that may occur between caregivers and patients as they navigate the MAiD process, drawing attention to the need for open dialogue that is instigated and facilitated by healthcare professionals involved.

Assisted dying legislation differs between countries and more research is needed to explore how it may impact the dialogue with family caregivers. Notably, Snijdewind and colleagues’12 interviews with Dutch physicians demonstrated that they included relatives in the process of physician-assisted suicide, and in some cases told patients they would not proceed if they did not feel as though their loved ones would be able to cope with the aftermath of the intervention. This may differ from the model of MAiD delivery in other countries (eg, Canada) where there is no legislative requirement for caregivers to be included or considered in the formal MAiD process.

Differences in assisted dying legislation between countries may also impact other elements of the caregiver experience. In Canada, for instance, current legislation does not allow consent for MAiD to be given as an advance directive, and individuals approved for MAiD must be suffering from an irremediable and grievous medical illness with a foreseeable natural death, and be capable of consent at the time MAiD is delivered. This may have the unintended consequence that patients are requesting MAiD earlier than they would wish, in order to ensure that they do not decline cognitively and cease to qualify for MAiD.13 This may have an impact on caregivers who have to face loss of a loved one earlier than anticipated and perhaps before there has been adequate time for death preparation. In contrast, in the Netherlands, it is legal for patients to create advance care directives for MAiD. Caregivers of these patients may be faced with a different kind of ethical and moral challenge if they do not agree with their loved one’s decision by the time MAiD is to be delivered, yet can no longerhave influence due to the patient’s cognitive decline.14 Indeed, even with an advanced directive in place, research has found that physicians and family members of patients with dementia may be reluctant to provide assisted death in the context of the patient who is no longer capable to provide informed consent.15 16 This further highlights the importance of a family-inclusive healthcare system that considers caregiver perspectives and assists them through the process alongside the patient, especially in ethically challenging cases such as patients with cognitive impairement.

How does MAiD affect caregiver perception of quality of death and dying?

Overwhelmingly, in the research reviewed, caregivers of patients who sought MAiD viewed the dying experience more favourably than death they anticipated by natural causes. Multiple studies reported that caregivers had a favourable view of quality of death of patients who used physician-assisted suicide, namely by preventing unnecessary suffering of their loved one.14 17 In a study conducted in the Netherlands, Georges and colleagues14 found that 92% of caregivers of patients with a variety of illnesses reported that medically assisted death was a favourable contributor to the quality of death experience. Further, in a broad systematic review of patient, caregiver, and the public attitudes towards assisted death, Hendry and colleagues17 reported on 13 relevant studies (10 quantitative, 3 qualitative) that included caregivers of those who requested MAiD.17 They reported that these bereaved caregivers viewed MAiD as humane, compassionate, and contributing positively to the death experience by preserving dignity, alleviating suffering and respecting patient wishes. From these studies, it is evident that bereaved caregivers of those who have been involved with the MAiD process retrospectively tend to view their loved one’s death in a positive light.

In Oregon, using a standardised questionnaire developed for bereaved caregivers to assess quality of death and dying (the Quality of Dying and Death questionnaire), Smith and colleagues18 found that caregivers of patients with a variety of illnesses who requested assisted death felt more prepared for the death and rated overall quality of death more favourably compared with caregivers of patients who did not request an assisted death. Similar research exploring caregiver after-death evaluations is needed in other settings where MAiD has been made legal. Further, there is a need to assess which quality of death assessment tools are most suitable for the assisted dying context. Lastly, we need to understand whether perceptions of the death experience differ based on family support of MAiD, and whether access to palliative care prior to the intervention makes a difference.

How does MAiD affect grief, bereavement, and caregiver mental health after death of their loved one?

A study in Oregon examining caregiver mental health outcomes after a loved one’s MAiD request (in the context of cancer, ALS, or other illnesses) found that approximately 14 months after death, 11% of family members had a major depressive episode, 2% had prolonged grief, and 38% had received mental healthcare.19 Interestingly, this study compared bereaved caregivers of those who requested MAiD with bereaved caregivers of patients who did not request MAiD and did not find a difference between groups in terms of these outcomes. Whether or not the patient went through with assisted death did not influence grief or mental health outcomes of their family members. Rather, caregivers of those who received MAiD expressed less regret since they believed that their loved one’s decision was honoured.

In the Netherlands, Swarte and colleagues4 found that bereaved caregivers of terminally ill patients with cancer who died by euthanasia suffered less complicated grief when compared with bereaved caregivers of terminally ill patients with cancer who died of natural causes. The authors posit that caregivers having the opportunity to say goodbye to their loved one mitigated the grief and post-traumatic stress reactions to follow. Of note, the recruitment methodology involved contacting the next of kin in the medical chart. These contacts were asked to participate and supply contact information for other relatives who were with the patient at the moment of death. There were differences in the caregiver groups recruited; family and friends of euthanasia patients consisted more of the subgroup defined as ‘other’ (such as cousins, in-laws, or friends), whereas the family and friends of patients who died of natural causes consisted of more first-degree and second-degree relatives (eg, children and siblings). It is unclear if this reflects the fact that euthanasia patients were less likely to have immediate family members involved in their end-of-life care, or that their immediate family members were less likely to participate in this kind of research.

Given that the process of medically assisted death differs across jurisdictions, there may be different caregiver mental health outcomes based on the country of MAiD delivery. In Switzerland, a forensic investigation follows every assisted suicide and includes police, medical examiners, and the state attorney. In a Swiss study, Wagner and colleagues20 assessed 85 bereaved family caregivers of patients who died of MAiD at 14–24 months postdeath and found that 13% of participants qualified for a full diagnosis of post-traumatic stress disorder (PTSD), an additional 6.5% met the criteria for subthreshold PTSD, 4.9% experienced complicated grief, and 16% suffered from depression. Those with a diagnosis of PTSD reported experiencing more emotional difficulties with the forensic investigation. It is still unclear whether PTSD was related to witnessing the death of their loved one by assisted suicide or if it was mediated by the trauma of the forensic investigation.21 Future research should assess PTSD symptomatology in caregivers in different jurisdictions in which a forensic investigation is not routinely part of the MAiD process to determine if it is likely a consequence of the intervention itself. This study demonstrates that stigmatising assisted death as a crime may promote caregiver ambivalence and distress about their loved one’s decision regarding their death. One participant stated: “the fact that the police and medical examiner arrived after his death underlined the feeling of having done something wrong.” 21 The medical intervention and the legal process surrounding it are connected, and both may influence subsequent mental health outcomes in bereaved caregivers. Thus, there is a need to balance the medicolegal oversight with sensitivity to families who may be feeling vulnerable and bereft.

Unfortunately, research on post-MAiD outcomes in caregivers is relatively scant, and it is unclear whether MAiD leads to better outcomes for caregivers in all cases. Either way, there is a need for implementation of support services and psychosocial interventions in this population prior to the passing of a loved one to ease the transition and prevent undue psychological burden, as well as a need for post-MAiD psychosocial support.

What are the challenges to studying the caregiver MAiD experience?

Areas for future research

As emphasised above, the research on the caregiver experience of MAiD is scant and from a variety of diverse settings and diverse populations, preventing sweeping generalisations and conclusions. Limitations in the data currently available highlight numerous areas for further research and exploration. Given the recent legalization of MAiD in Canada, we anticipate that more Canadian literature addressing these issues will be forthcoming.