Research ArticleResearch

Patient experiences with requests for medical assistance in dying

Perspectives of those with complex chronic conditions

Clark Fruhstorfer, Michaela Kelly, Laura Spiegel, Peter J. Baylis, Justine Dembo and Ellen Wiebe
Canadian Family Physician January 2024; 70 (1) 41-47; DOI: https://doi.org/10.46747/cfp.700141

Abstract

Objective To explore experiences of patients who have complex chronic conditions (CCCs), such as fibromyalgia and chronic fatigue syndrome, when they request medical assistance in dying (MAID) in Canada.

Design Qualitative study using semistructured interviews.

Setting Canada.

Participants Individuals with CCCs who had contacted any 1 of 4 advocacy organizations between January 21, 2021, and December 20, 2022, about requesting MAID for suffering related to CCCs or who had applied and been assessed for MAID.

Methods Interviews were conducted virtually (by video or audio) and recordings were transcribed. Thematic analysis was conducted in an iterative manner with abductive analysis. As interviews were completed, transcripts were reviewed and emerging themes were discussed at regular intervals.

Main findings Sixteen individuals were interviewed. All spoke of long-lasting suffering that was unresponsive to an array of medical treatments. Although some participants had hoped to receive MAID immediately following the 90-day assessment period, many mentioned that approval would provide or had provided validation of their illness and a sense of control, especially should their illness become unbearable. Participants sharply distinguished between MAID and suicide, saying they preferred MAID because it offered greater certainty and caused less emotional pain to others. Many said that participating in this research was beneficial because they believed the interviewers truly listened to them.

Conclusion Participants described experiences with CCCs and requests for MAID. This information may provide family doctors with new insight to inform interactions with patients with CCCs.

Medical assistance in dying (MAID) involves a physician or nurse practitioner administering or prescribing a substance that results in the death of an autonomous individual who is capable of making medical decisions and has requested assistance in dying.1 In Canada MAID was legalized with the passage of Bill C-14 on June 17, 2016, in response to the landmark case Carter v Canada.2,3 In that case, the Supreme Court of Canada ruled that criminal laws that prohibited access to MAID violated the right to “liberty and security of the person” by preventing people with grievous and incurable medical conditions from making decisions about their own bodily integrity.3

Bill C-14 legalized MAID based on certain criteria, including that any patient who qualified had a grievous and irremediable medical condition that caused them enduring and intolerable suffering and for which natural death was reasonably foreseeable.4 However, on September 11, 2019, the Superior Court of Quebec, in the Truchon v Canada (Attorney General) decision, declared the “reasonably foreseeable natural death” eligibility criterion contained in the federal MAID legislation was unconstitutional.5 Bill C-7 was drafted in response and was brought into law on March 17, 2021.6 This amendment allowed for people whose deaths were not reasonably foreseeable to be eligible (using track 2 requests), but it also added new safeguards for this group. These include a 90-day assessment period, a requirement that 1 assessor per case must have expertise in the condition causing unbearable suffering or the assessors must consult with someone who has such expertise, that the applicant has given serious consideration to means of alleviating their suffering, and that relevant consultations had been offered with respect to these means.

In cases where patients’ sole underlying medical conditions are mental disorders, eligibility for MAID in Canada was postponed until March 17, 2024, to allow provinces and territories time to prepare for such cases and to allow time for key resources to be developed for assessors and providers.7

Complex chronic conditions (CCCs) are diseases that involve multiple comorbidities and present with patient-specific varieties of functional and disability needs commonly requiring involvement of multiple health care providers.8-10 Examples of CCCs include chronic pain syndrome, fibromyalgia, and myalgic encephalomyelitis, commonly referred to as chronic fatigue syndrome (CFS). These conditions typically persist for long periods and are diagnosed by symptoms and managed symptomatically, both nonpharmacologically and pharmacologically, in the context of patient goals of care. Unfortunately, some patients continue to experience suffering and therefore seek MAID. We are not aware of any other published studies that give voice to patients with CCCs who seek MAID.

In a multicentre Canadian qualitative study that investigated patient experiences with MAID before the law changed in 2021, major themes identified included the need for transparent assessment processes, expedited management of requests, and strong patient care and coordination.11 Another qualitative study identified ambiguousness and lack of support in care pathways and issues regarding long-term sustainability for MAID practitioners as concerns.12 A systematic literature review with thematic analysis investigated patient family members’ experience with MAID in 4 countries, including Canada; family members’ agreeability to MAID provision and sharing similar values with the patient on moral and practical grounds were seen as important factors during the MAID process.13

Unravelling complexities related to patient and family perspectives must be considered along with CanMEDS competencies as a guide for physician practice.14 All physicians in Canada should practise based on the ethical framework provided by CanMEDS. The health advocate role in the CanMEDS framework describes the following enabling competency: “Work with patients to address determinants of health that affect them and their access to needed health services or resources.”15 Therefore, to meet this requirement effectively, we must understand the perceptions, wishes, and needs of patients, especially in the context of vulnerable populations.

This study aims to give voice to individuals living with CCCs who have requested MAID. This information may provide family doctors caring for these patients as well as those assessing patients for and providing MAID with greater insight into their experiences.

METHODS

The research team was composed of 4 female (M.K., L.S., J.D., and E.W.) and 2 male (C.F. and P.J.B.) clinician researchers with previous experience in conducting qualitative research. We conducted a qualitative descriptive study using semistructured interviews.16-18 We chose this method because there are no published data about experiences of Canadians living with CCCs in applying for MAID. This motivated us to contribute to health care providers’ and the scientific community’s understanding of this patient experience.

We recruited participants from across Canada who had previously contacted any 1 of 4 Canadian advocacy organizations (Dying with Dignity Canada, Right to Die Society of Canada, Exit International [Canadian chapter], or the British Columbia Civil Liberties Association) between January 21, 2021, and December 20, 2022, about requesting MAID for suffering related to CCCs or who had applied for MAID for this reason. At study onset, the agencies reached out to these individuals to ask if they were interested in participating in this research. Those who consented to be contacted for research purposes were sent a recruitment flyer (Appendix A available from CFPlus*) by email, which included information about the purpose of the study, backgrounds of the research team members, and contact details of the researchers. In December 2022 we also asked providers to give recruitment flyers to patients who had applied for MAID due to suffering from CCCs. To be eligible for the study, participants had to be older than 18 years, speak English, and be able to provide informed consent. Potential participants who contacted our research team were sent a consent form (Appendix B*) by email. Consent was provided verbally. Several techniques were used to enhance data trustworthiness, including sampling until theme saturation; verifying correctness and narrative intent regularly with study participants; and having multiple researchers coding data (M.K. and C.F.). Our interview guide (Appendix C*) with open- and close-ended questions was developed using information from the literature and investigator experience.19 The study adhered to the Consolidated Criteria for Reporting Qualitative Research guidelines.20

Interviews lasted between 45 and 75 minutes, were conducted by 3 researchers (C.F., M.K., and L.S.), and were audiorecorded and transcribed. Transcripts were stored electronically in a secure online platform, anonymized using code numbers, and were read by all team members as they were completed. We conducted thematic analysis in an iterative manner with abductive analysis; that is, we looked at the overall gestalt, then at the details, and again at the whole.20 As interviews were completed each investigator reviewed the transcripts, and we discussed themes at regular meetings until no new themes emerged and we reached consensus. Two team members coded the interviews. No software was used to support coding or to manage the data.

Approval for this study was obtained from the University of British Columbia Behavioural Research Ethics Board (UBC BREB number: H20-03543).

FINDINGS

Sixteen participants were recruited with a mean age of 53.6 years, ranging from 20s to 80s. All participants had completed at least high school education and 8 had each completed a bachelor’s degree. Most (13 of 16) were unable to work and most lived by themselves (11 of 16). Only 5 said they had supportive people in their lives. The most common diagnoses were chronic pain syndromes including fibromyalgia and complex regional pain syndrome (13 of 16), with 5 having myalgic encephalomyelitis or CFS. Many had concurrent depression. All had suffered for years and most for decades.

Four key themes emerged from participant interviews: the prolonged suffering participants had endured; the positive experience of having been approved or the negative experience of having been rejected for MAID; roles of meaning and purpose that had informed their decisions; and differences between MAID and suicide.

Prolonged suffering. The dominant theme, based on the emotional words used and the amount of time spent talking about it, was the suffering participants had endured. All participants (16 of 16) described persistent long-lasting suffering that had led to poor quality of life. Multiple factors had led to this, including poor mobility due to functional disability or pain, extreme fatigue and exhaustion, and social isolation; many of these conditions were further compounded by mental health diagnoses that had added to participants’ inability to enjoy life or guilt related to reliance on friends and family members. Comments from participants included the following:

I am in so much pain 24/7 that if I do not receive my pain medication on time, I scream with agony. It’s horrible. The quality of my life? It is absolutely horrible. I would, from 1 to 10, I would say it’s a minus 1. (Participant 5, fibromyalgia rheumatica and osteoarthritis)

What I’m suffering from [the pain] is equal to that of stage 4 bone cancer. I feel like I’m dying all the time. (Participant 1, chronic regional pain syndrome)

My chronic fatigue keeps me in bed where I just get so depressed, I want to die. (Participant 2, chronic pain and CFS)

Fibromyalgia causes all-body pain, just about everywhere. So I’m fatigued and in pain most of the time. Then [there is also] the depression I’ve been trying to deal with since I’ve been 18. (Participant 3, fibromyalgia, CFS, and depression)

I’m homebound 24/7. I have next to no socialization activities, no physical activities. If depression lifts and I have desire to do physical activities, the pain doesn’t allow it. If the pain allows me, then the depression keeps me home. (Participant 7, chronic pain and depression)

Participants also mentioned suffering related to unsuccessful or inaccessible treatment modalities. Many expressed frustrations with the health care system, particularly related to feelings of abandonment, medical errors, and having been passed from one health care professional to another.

I mean, I’ve been through 4 or 5 physiotherapists, 2 physiatrists, 2 pain doctors. I’m tired. I am [too] exhausted to find any other resources. (Participant 7, chronic pain and depression)

I have been to 3 orthopedic surgeons, and all have said they can’t fix me. (Participant 2, chronic pain and CFS)

There hasn’t been a therapy that has been anything but temporarily helpful. (Participant 4, fibromyalgia and restless leg syndrome)

It was just error after error after error. I had a really difficult time getting treatments. If I had been able to be seen by a specialist when I should have been, it would not have been this bad. (Participant 9, chronic pain)

Experience of requesting MAID. Patients described lack of validation of their suffering during medical care and lack of control. Receiving MAID approval was viewed as validation of their suffering and confirmation that their illnesses were real; it gave them back some control.

The whole MAID process does give me hope. It’s an end to both the physical and mental pain. (Participant 6, chronic pain syndrome, traumatic arthritis, and posttraumatic stress disorder)

I guess the best way of saying it is that … the MAID process allowed outside people to look in and see whether or not I was being, you know, honest. Reviewing things, not so much correctly, but practically, and whether or not my decision has been made from being crazy, so to speak, as opposed to being realistic. (Participant 6, chronic pain syndrome, traumatic arthritis, and posttraumatic stress disorder)

It took the word indefinitely off the end of my pain. And that has made it easier to cope with the pain. (Participant 9, chronic pain)

My illness took away most of my control over a lot of things. When [my MAID application] was declined, I initially felt this kind of hopeless panic in a way—like, what am I going to do? Oh my god. And being trapped at that pain level is one of the worst fears that I’ve had. (Participant 9, chronic pain)

Role of purpose and meaning. Approximately half of participants described a strong sense of meaning in life; for some this had delayed their desire for MAID. Some had found purpose in advancing MAID approval processes, in helping others, or through pursuing personal interests.

Well, at this point I don’t want it [MAID] anymore. I have so many friends that I talk to and I love playing the xylophone and I’m having a wonderful time writing this comic book, so I have purpose in my life again, so I really don’t want to go now. (Participant 3, fibromyalgia, CFS, and depression)

I made a sense of purpose out of my illness [by creating a documentary to advocate for others in pain]. (Participant 9, chronic pain)

Still, the other half of respondents described no sense of meaning or purpose in life, and this had contributed to their desire to apply for MAID; this appeared to be secondary to restrictions due to their illnesses and inability to engage in activities they had enjoyed.

I had to give up the community garden that I was a part of establishing. I was a part of that for 10 years, and I can’t garden anymore. [I’m] pretty much unable to paddle, and I’ve been an avid kayaker. (Participant 4, fibromyalgia and restless leg syndrome)

I do want to enjoy what life has to offer. I just don’t see a path to where I can do that. (Participant 7, chronic pain and depression)

Difference between MAID and suicide. Each participant was asked about the difference between MAID and suicide. Many described a deep fear of being unsuccessful. This related to either making their physical suffering worse or resulting in further restriction of freedom, such as hospitalization for suicidal thoughts. None discussed any moral or philosophical differences between MAID and suicide.

It’s not easy to die. It is not. I can’t do it.... I came to the conclusion I don’t have the ability to kill myself. As much as I like chemistry, I couldn’t figure out a way to do it. It’s baffling. Jokingly, I say let the experts handle it. I am grateful that that option is available to me. (Participant 7, chronic pain and depression)

I also see [MAID] as a guarantee that you will die.... If you wrote a suicide note explaining exactly why you want to kill yourself and then you ended up not succeeding, you would be placed in a mental institution for observation and treatment or whatever, right? (Participant 5, fibromyalgia rheumatica and osteoarthritis)

I know a woman who attempted suicide, and I don’t know exactly what happened, but she ended up with brain damage. (Participant 12, CFS and chronic pain)

Participants reported that family and societal acceptance was important to them; MAID provided objective legitimization by unbiased medical professionals that their suffering warranted ending their lives. Patients described negativity associated with suicide and saw MAID as a more peaceful, accepted method.

If you get medical assistance it means that your condition warrants [assisted death], but people who just commit suicide almost always devastate their friends, who keep thinking, “What else could I have done so he wouldn’t [have done] that?”; it would be very cruel to my friends. (Participant 3, fibromyalgia, CFS, and depression)

I’m really grateful for MAID because it is reliable and it will be peaceful. (Participant 4, fibromyalgia and restless leg syndrome)

DISCUSSION

Study participants who had requested MAID for CCCs described intense prolonged suffering that included physical symptoms, psychological symptoms, and loss of control, similar to comments from other MAID applicants in Canada.21 Experiences of physical and psychological symptoms with loss of control that participants reported are similar to accounts in other qualitative studies of people living with chronic pain or CFS.22,23 Participants in this study described having been heard and taken seriously during the MAID assessment process. Some then postponed MAID because their suffering no longer felt interminable and because it was more under their own control. This is similar to experiences reported of people who were accepted for MAID in Canada based on their natural deaths having been reasonably foreseeable.24,25

Participants spoke about how having purpose and meaning in their lives had affected their desire for MAID. This has been recognized as an important part of end of life, and treatments such as dignity therapy have been developed as part of palliative care.26 Unfortunately, no participants in this study would have qualified for formal palliative care that might offer these services.

As in previous studies of Canadians’ perceptions of MAID and suicide, participants in our study preferred MAID because they deemed it more certain and more acceptable to others.27 They discussed practical but not moral and philosophical differences between MAID and suicide. This subject may be worthy of further study.

Unlike typical MAID applicants whose natural deaths were reasonably foreseeable (track 1 requests), participants in our study frequently reported lacking effective and meaningful services and lacking support for CCCs. In a survey of Canadian MAID providers conducted before the law changed in March 2021 to expand MAID access to patients whose natural deaths were not reasonably foreseeable (track 2 requests), unmet needs of patients were rarely reported and most unmet needs were related to loneliness and poverty.28 In a survey of Canadian providers’ experiences with assessing patients making track 2 requests, unmet needs were frequently reported in terms of patients not having had access to effective and affordable services and having concurrent mental illness.29 In our study a number of participants talked about concurrent depression.

Unfortunately, few evidence-based treatments exist for many CCCs such as chronic pain and CFS, and many available resources such as chronic pain clinics have long waiting lists or are not covered by government insurance.30-33 Most specific treatments are not recommended by clinical practice guidelines; instead, guidelines usually recommend treating individual symptoms, including comorbid depression, and advocating for coping strategies such as pacing oneself to reduce fatigue.34

Treating patients with CCCs has long been a challenge for family physicians, but now that patients with these conditions can apply for MAID, it is even more challenging. The Canadian Association of MAID Assessors and Providers has produced a guideline on assessing people with CCCs for MAID and its appendices offer approaches to treatment that may be helpful.35 Study participants talked about finding meaning and purpose in their lives; family physicians may have suggestions to improve these facets within the context of patients’ illnesses. From this study we have learned that the process of requesting MAID can acknowledge and legitimize the suffering participants described.

Limitations

A qualitative study such as this with a small sample size is not meant to be generalizable, but we hope that this information is transferable.36 We encourage clinicians to engage in this type of narrative exploration with patients to learn more. Further study is needed with more diverse patient populations.

Conclusion

This report provided an opportunity for people with CCCs, such as chronic pain and CFS, to describe their suffering and their journeys toward applying for MAID. This information may provide family physicians with important insight to inform interactions with these patients.

Notes

Editor’s key points

  • ▸ In a small qualitative study of Canadian patients (N=16) with complex chronic conditions, long-lasting suffering that had led to poor quality of life was the most common reason patients gave for having requested medical assistance in dying (MAID). The most common diagnoses patients reported were chronic pain syndromes (13 of 16 patients).

  • ▸ Receiving approval for MAID was viewed as validation of patients’ suffering and provided some with a sense of having regained control over their lives, which contributed to some patients deciding to delay receiving MAID.

  • ▸ Survey participants indicated MAID was preferable to suicide as it was more certain, more socially acceptable, and more peaceful; and because of fears of negative outcomes resulting from unsuccessful suicide.

  • ▸ Unlike previously reported experiences of MAID applicants whose natural deaths were reasonably foreseeable, many survey participants reported having unmet health care needs. Opportunities may exist for family physicians to explore different ways to help patients with complex chronic conditions and to better understand their experiences.

Points de repère du rédacteur

  • ▸ Dans une petite étude qualitative auprès de patients canadiens (N=16) souffrant de problèmes chroniques complexes, des souffrances de longue date qui ont entraîné une mauvaise qualité de vie étaient la raison la plus fréquente qu’ont exprimée les patients pour avoir demandé l’aide médicale à mourir (AMM). Les diagnostics les plus courants qu’ont signalés les patients étaient des syndromes de douleur chronique (13 des 16 patients).

  • ▸ L’approbation de l’AMM était considérée par les patients comme une validation de leurs souffrances et a suscité chez certains le sentiment d’avoir regagné le contrôle de leur vie, incitant certains d’entre eux à décider de retarder l’administration de l’AMM.

  • ▸ Les participants au sondage ont indiqué que l’AMM était préférable au suicide, parce qu’elle est plus certaine, plus acceptable socialement et plus paisible, et aussi parce qu’ils craignaient des issues défavorables à la suite d’un suicide raté.

  • ▸ Contrairement à des expériences rapportées antérieurement par des demandeurs d’AMM dont la mort naturelle était raisonnablement prévisible, plusieurs participants au sondage ont signalé que leurs besoins en soins de santé n’avaient pas été satisfaits. Certaines possibilités pourraient s’offrir aux médecins de famille pour explorer différentes façons d’aider les patients souffrant de problèmes chroniques complexes et mieux comprendre leurs expériences.

Footnotes

  • ↵* Appendices A, B, and C is available from https://www.cfp.ca. Go to the full text of the article online and click on the CFPlus tab.

  • Contributors

    All authors of this paper have directly participated in the planning, execution, or analysis of the study; all have read and approved the final submitted version.

  • Competing interests

    None declared

  • This article has been peer reviewed.

  • Cet article a fait l’objet d’une révision par des pairs.

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Patient experiences with requests for medical assistance in dying
Clark Fruhstorfer, Michaela Kelly, Laura Spiegel, Peter J. Baylis, Justine Dembo, Ellen Wiebe
Canadian Family Physician Jan 2024, 70 (1) 41-47; DOI: 10.46747/cfp.700141
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