Abstract
Alongside increasing rates of dementia diagnoses worldwide, efforts to seek alternative end-of-life options also increase. While the concept of assisted dying remains controversial, the discussion around its provision for people with dementia raises even more sensitivity. In this study, we explored how the practice of assisted dying for people with dementia is conceptualized and understood using the shared narratives of online contributors. An observational netnography over 20 months was carried out within five open Facebook communities. Thematic analysis was conducted on 1,007 online comments about assisted dying and dementia. Results reflected four central themes and five subthemes: understanding dementia; understanding assisted dying laws; caregivers’ feelings; and moral/personal dilemmas. Findings reveal that the majority of communities’ contributors fear developing dementia. They support the provision of advance euthanasia directives—written by competent patients—to prevent unnecessary suffering, and protect patients’ wishes and freedom of choice when decision-making competency is lost.
Keywords
Introduction
While assisted dying and its moral and ethical underpinnings are debated worldwide, much more attention is directed toward extending its provision to individuals with dementia (Bravo et al., 2019; Evenblij et al., 2019; Picard et al., 2019). Alongside the growth in public discussion in the past decade, some societies have witnessed an exponential increase in (a) acceptability among health professionals (HPs) of providing such assistance (Bolt et al., 2015; Bravo et al., 2018b, 2019; Cleemput & Schoenmakers, 2019; Rietjens et al., 2005; Rurup et al., 2006), (b) the number of requests from persons with dementia (Schuurmans et al., 2019), and (c) the desire for access to an assisted death from patients with dementia and their families (Bravo et al., 2018a; Cleemput & Schoenmakers, 2019; Kouwenhoven et al., 2013; Tomlinson & Stott, 2015). The presence of an advance euthanasia directive (AED) that is written prior to the loss of decisional competency significantly contributes to increased acceptance to extend assisted dying to those who are at an advanced stage of dementia.
In the Netherlands, a written AED constitutes a legitimate request for a person with advanced dementia who has lost mental capacity. In the Netherlands, the occurrence of assisted death for those with dementia has more than tripled since 2011 (Regional Euthanasia Review Committees [RTE], 2020), although the rate is low (Evenblij et al., 2019; Schuurmans et al., 2019). Among the Dutch granted assisted dying requests, the majority were reported as concurrent requests that involved patients deemed competent in the early stages of dementia (RTE, 2020). This may be an indication of the unfeasibility of an AED for individuals in the advanced stages of dementia (de Boer et al., 2010; van Delden, 2004). From the beginning of assisted dying legislation, the validity of AEDs for this group of patients has been central to debate (Dierickx et al., 2017) because such directives are subjected to rigorous moral and ethical evaluation. It is encapsulated in the question, “should the earlier wish (to have an assisted death) of an individual, made when clearly competent, be seen as applicable at a later stage when competence is not apparent?”
The influence of social media on such topical debates cannot be ignored as they reflect and exemplify public opinions on such issues in a complex and nuanced way (Jaye et al., 2019). With social media, issues that were previously confined to the margins of private discussion are now able to attract global support and attention (Snowden, 2016). In the literature, the use of the online medium has been highly valued as a research tool as it can lead to trustworthy interpersonal communication, spontaneous self-expression, and increased access to more geographically dispersed groups (Branthwaite & Patterson, 2011; de la Peña & Quintanilla, 2015; Langer & Beckman, 2005; Närvänen et al., 2013; Sade-Beck, 2004). In particular, research in the online expression of illness experiences provides a rich source of data to understand the views, preferences, and needs of people, patients, and professionals relevant to health care (Eysenbach & Till, 2001). These online expressions are a unique source of data that are different from narratives obtained through other research means such as interviews (Anderson, Hundt, et al., 2019).
Previous research has explored the attitudes of particular groups of people, including physicians, nurses, informal caregivers, and the general public on the matter of assisted dying in the context of dementia (Braverman et al., 2017; Bravo et al., 2018a, 2018b; Kouwenhoven et al., 2015; Terkamo-Moisio et al., 2019; Tomlinson & Stott, 2015). However, most of the research conducted in specific geographical settings such as the Netherlands and Canada have primarily utilized surveys or interviews with a limited number of participants. The data provided by these instruments may be potentially biased as these tools rely on self-reports and are drawn from a confined pool of subjects (Müller et al., 2016). Although social media has already offered insightful information on a range of health-related issues, including the caregivers of individuals with dementia (Anderson, Eppes, & O’Dwyer, 2019; Anderson, Hundt, et al., 2019), to our knowledge, limited research (if any) has used the online medium to qualitatively explore how the publics’ experience with dementia contributes to their views on assisted dying. In this study, we explored naturally evolving and occurring online comments pertaining to assisted dying for people with dementia. The purpose was to explore how the practice of assisted dying for people with dementia is conceptualized and understood in the context of online communication using shared experiences, challenges, and the preferences of online contributors to Facebook communities.
Review of the Literature
Dementia is a major global challenge facing health and social care, requiring concerted international action and a commitment to prevention, treatment, and social interventions. Such action is essential if we are to improve the living and dying experiences for individuals with dementia, their families/caregivers, and society as a whole (Livingston et al., 2017). Dementia shortens life expectancy to varying degrees, with studies reporting a median survival time of 3.3 to 11.7 years from the onset of diagnosis until death (Cunningham et al., 2015; Todd et al., 2013). Despite this, it is often not recognized as a terminal condition, which can result in failure to adopt a timely palliative care approach (Livingston et al., 2017; Sampson et al., 2006) and involve patients in advance care planning (Ryan et al., 2012). Along with a number of associated challenges with the low uptake of palliative care for patients with dementia (McInerney et al., 2018), there may also be limited access to hospice care because of poor prognostic indicators of 6-month mortality (Lewis, 2014). Optimal care at the end of life for those with dementia may be variable, taking away the chance of improved quality of dying, and quality of support and care-management for caregivers (Lewis, 2014).
The implications of dementia for individuals, families, and caregivers have been increasingly investigated (Anderson, Eppes, & O’Dwyer, 2019; Oh et al., 2019; Prorok et al., 2013). Studies show that dementia affects not only a person’s abilities and quality of life, it also disrupts the well-being of caregivers, family, relatives, and friends who witness the gradual decline of their loved one (Frankish & Horton, 2017; Georges et al., 2008; Livingston et al., 2017; Oh et al., 2019). With the continuous progression of dementia, the need for family and professional support will grow exponentially, which may lead to greater physical, psychological, psychosocial, and existential suffering (Tomlinson et al., 2015). Whether or not dementia is necessarily a state of dreadful suffering is contested (de Boer et al., 2007); some evidence, however, suggests that suffering and the fear of future suffering can result in the desire to request an assisted death (Evenblij et al., 2019; Monforte-Royo et al., 2012). Others who fear developing dementia may contemplate writing an AED in anticipation of the suffering that may follow (de Boer et al., 2007) and becoming a burden on others (Tomlinson et al., 2015). Others have interpreted such requests in terms of exercising autonomy and control over one’s life and a right to die (Kouwenhoven et al., 2019).
A division of attitudes on assisted dying for patients with dementia has been demonstrated across different populations alongside the severity of dementia. Despite some inconsistencies in results, research shows that HPs generally hold more restrictive views than those of the public (Terkamo-Moisio et al., 2019; Tomlinson & Stott, 2015). Although a myriad of factors is responsible for this dichotomy (Bolt et al., 2015; Schuurmans et al., 2019; Terkamo-Moisio et al., 2019), it appears that depth of involvement in the act of assisted dying itself is negatively associated with the level of support. Support from the public (including informal caregivers) and nurses who are more involved in the care of patients and less in the practice of assisted dying requests are respectively greater than from physicians who are most likely responsible for performing an assisted death (Bravo et al., 2019; Kouwenhoven et al., 2013; Rietjens et al., 2005). This restrictive views of HPs can be seen in the Dutch mortality follow-back study in 2015, which shows that more than half of assisted dying requests were rejected (1.2/2.1) by Dutch physicians (Evenblij et al., 2019), while all granted cases in the same year were related to patients in earlier stages of dementia when competency was less of an issue (RTE, 2020). The desire to extend assisted dying laws to include patients with dementia who are now incompetent is also greater among older adults and informal caregivers than for HPs (Bravo et al., 2019).
The sensitivity of our research focus only adds to the already existing difficulty of gathering dementia research data (Carmody et al., 2015). Existing sources of data on social media, however, may provide powerful insights and will inform future research in identifying and overcoming challenges to optimal end-of-life care, particularly by drawing attention to the struggles of individuals with a desire to access assisted dying. This may provide helpful information to develop political and social infrastructures.
Method
Technology and the internet have laid the groundwork for new forms of social organization in online communication with communities growing alongside real-world communities. This has resulted in new research methodologies to gain insights into these emerging online interactions. Netnography, or online ethnography, is one prime example. Netnography is a qualitative research methodology based on observations of technologically mediated communication (Kozinets, 2002, 2010; Langer & Beckman, 2005) “to arrive at the ethnographic understanding and representation of a cultural or communal phenomenon” (Kozinets, 2010, p. 60).
Netnography is particularly useful to study personally or politically sensitive topics and stigmatic phenomenon, as well as communities where access based on conventional methods is difficult (Costello et al., 2017; Langer & Beckman, 2005). Netnographic approaches commonly involve three clear stages: (a) entrée: research design, specification of research questions, and identification of suitable online sites; (b) data collection: direct copying of the texts from communication sites and observations of the community and its members, interactions, and meanings; and (c) analysis and interpretation: classification, coding analysis, and contextualization of communications (Kozinets, 2002; Langer & Beckman, 2005).
A Netnographic Study Plan
Social online communities may be studied through utilizing either a participative (active) approach (closer to traditional face-to-face methods) or a purely observational (passive) approach, in which the netnographer merely observes the community they are interested in. The presence of the researcher is often found to be counterproductive (Eysenbach & Till, 2001; Garland, 2009; Kozinets, 2002). We employed an observational approach to reduce the impact of the researcher’s presence (Garland, 2009; Kozinets, 2002). In such an environment, the interpretation of data is grounded in the content of naturally occurring communications.
Entrée and Sampling Strategy
A type of purposeful sampling—critical case sampling—was used that involved choosing a number of the most illustrative cases (e.g., online sites) to explore the understudy objectives in depth and facilitate logical generalizations (Patton, 2014; Schuman et al., 2019). A thorough screening of a wide range of online sites was carried out to find the most relevant communities that address assisted dying and dementia. The definition of community in netnography has been adapted over the years (Kozinets, 2015). We considered any dispersed groups or communities that shared an exchange pattern of “relevant narrative themes” as our target community (Kozinets, 2015, p. 119). No communities were identified that solely focused on assisted dying for people with dementia; therefore, we targeted communities that discussed assisted dying in general to extract any naturally occurring communication with regard to dementia. Having considered this, the compilation of a list of online sites’ characteristics indicated Facebook as the most relevant study field in the research scope: having higher traffic of postings, between-member interactions, active communication, and written comments (Kozinets, 2002, 2010). Facebook allows its followers to preserve their anonymity and privacy should they wish, which is considered as an advantage to inspire open communication among followers, particularly when discussing sensitive topics (Langer & Beckman, 2005).
Consideration of the variety and quality of content and professionalism identified five Facebook communities from the United Kingdom, Australia, Canada, the United States, and New Zealand. All of these were “open communities” that did not require an invitation, registration, or approval to join: these were essentially public spheres. All communities were virtual representations of nonprofit organizations in each country that either advocated for or promoted assisted dying laws for mentally competent adults who experience unbearable suffering as a result of a terminal illness aiming to educate and raise awareness among the public. Followers of these communities could be generally considered public as these communities are open to anyone to comment and do not require contributors to hold a particular stance on the issue of assisted dying. In support of the theory of “echo chamber” (Sunstein, 2001), one could argue that these advocacy communities would create an environment in which their followers encountered only opinions that coincided with their own so that their existing views are reinforced and alternative ideas are not considered. Although it is argued that online public Facebook communities are fragmented and clustered into homogeneous groups, it is also believed that this fragmentation decreases with the involvement of significantly higher numbers of users (Batorski & Grzywińska, 2018). The engagement of our communities’ contributors was relatively high and consistent with the number of followers in each community. By the time that the data gathering concluded, the number of people who followed or liked these Facebook communities varied from 3,247 for the smallest community to 322,961 for the most active community. Furthermore, contributing to these “open” advocacy communities may not necessarily suggest that contributors are unanimously in favor of assisted dying in principle as none of the communities required contributors to hold a particular stance on the issue of assisted dying. Nor does it suggest that the ones in favor would also hold the same permissive opinion with regard to its extension to cases such as dementia.
The coverage of the communities’ postings was primarily country-specific influenced by current local events/discussions potentially prompting a variety of shared experiences among the contributors given the differences between these countries, especially as they included countries with and without assisted dying laws in place. Communications could also, of course, go beyond individuals’ societal, cultural, ethnic, and national boundaries (Jaye et al., 2019) and potentially contribute to the global nature of the issues under discussion.
Data Collection and Analysis
The primary researcher (Aida Dehkhoda) observed the five Facebook communities on a daily basis over 20 months from August 2016 to March 2018, screening a total number of 110,450 online textual comments. Fieldnotes were also taken that mainly consisted of the netnographer’s reflection on the ongoing communications and their relevance and meaning. For two reasons, an extended period of observation was required to reach data saturation and offer a more meaningful account: (a) the selected communities were not solely focused on dementia within the context of assisted dying, and (b) the broad nature of the research objectives, which most likely bring a delayed stage of data saturation (Suri, 2011).
The qualitative analysis software program NVivo Pro 11 was used to filter the large amount of data collected. Data screening and indexing strategy was then applied using the keywords “dementia,” “demented,” and “Alzheimer” to ensure that only relevant data were selected for coding. This purposive search identified around 1,000 comments, in reply to 316 posts, that were specifically related to dementia. These comments were supplemented by others identified through fieldnotes but not necessarily using the chosen search terms.
We conceptualized our qualitative data using an inductive approach. The process of coding was employed using thematic analysis (Braun & Clarke, 2006), systematically generating initial codes and then analyzing these to identify themes. Initially, 13 themes, five of which had two subthemes, were identified which were then reduced to four central themes and five subthemes. To establish dependability (Schuman et al., 2019) and reliability, themes were constantly refined and rechecked by research associates—PhD-level experts in psychology and medical ethics—in terms of their meaning and coherency in relation to entire data set. This was done to eliminate any potential ambiguities, overlaps, or other threats to reliability. Fieldnotes were maintained at this stage to contextualize the data/themes and thereupon to check and refine our understanding of them to ensure the confirmability of the study (Wester, 2011). For refinement, the primary researcher was regularly checking the generated themes with new emerging contextual comments during the data analysis process.
Ethical Consideration and Informed Consent
As noted by Langer and Beckman (2005), “netnography is a suitable methodology for the study of sensitive research topics, enabling the researcher in an unobtrusive and covert way to gain deeper insights into consumers’ opinions, motives, and concerns” (p. 189). Although the use of the covert study of public online communities about sensitive topics is arguably both ethical and legitimate (Langer & Beckman, 2005), its covert nature of the way data are explored and collected has raised particular ethical concerns. Issues of privacy, autonomy, informed consent, and confidentiality are at issue (Eysenbach & Till, 2001; Zimmer, 2010).
Individuals may contribute to social media platforms expecting privacy, and not becoming research subjects (von Benzon, 2019). Unauthorized secondary documentation of online users’ contributions by the researcher could be considered a violation of privacy (von Benzon, 2019; Zimmer, 2010) interfering with their ability to control information about themselves (Zimmer, 2010). This emphasis on the inherent vulnerability of online contributors highlights the need to protect authors with an ethical approach to research. Online contributors have, on the contrary, control over the flow of their shared communications across different spheres through privacy settings of most social networking sites, including Facebook (Moreno et al., 2013). Von Benzon (2019) argues that “a framing of these writers that foregrounds their potential vulnerability, naivety and even ignorance is in fact highly paternalistic,” which deny their agency and diminish the act of online publication (p. 182). In her argument, von Benzon provides examples of public opinions and the law (e.g., in England, the Defamation Act 2013; the Racial and Religious Hatred Act 2006; etc.) that recognize online contributors as informed and competent agents who are responsible for appropriate use of the internet for self-expression. Similarly, some argue that the online contributors deserve credit for their creative and intellectual work; the works that should be treated as “published” (Bruckman, 2002).
Our data consisted of naturally occurring communications that were freely available to the open public online communities. The University of Auckland Human Participants Ethics Committee (UAHPEC)—who approve research projects through a peer-review process—exempt researchers using published or publicly available data from requiring ethics approval 1 (UAHPEC, 2019). It has been argued that when data are collected anonymously in the public domain/online communities (certainly the case for our communities), informed consent is not required (Eysenbach & Till, 2001; Kozinets, 2002, 2010). Taking this into account, we assumed that our communities’ contributors were aware of the fact that their posts were publicly available and open to anyone to read; thus, consent was not required. Furthermore, online users’ anonymity has been eliminated by the new Facebook (2018) policy under which the identity of Facebook contributors is not identifiable using their direct quotes in the Facebook search engine. This presumably protects the identity of contributors whose direct quotes are used in this study. Regardless, additional care was exercised through seeking consent from those whose direct excerpts were chosen to be published (Kozinets, 2002). The information such as the date and time of the chosen quotes recorded in the Nvivo database was used to identify the authors 2 and approach them to seek consent via their Facebook account. All approached contributors were supportive of the study being undertaken to acknowledge the importance of such research, with some offering further help should it be needed. Quotes were used directly retaining online contributors’ verbatim wording with the person’s emphasis—only minor changes were applied for semantic clarity.
Within the context of this particular study, we believe the methodology chosen can be ethically defended because the research was conducted in a public sphere (and not a private or closed sphere) where individuals had control over the information they disclosed. We view these shared comments as social commentary and a legitimate piece of secondary data (von Benzon, 2019). The same approach has been used in a variety of research on sensitive topics such as sex-related subjects (Berdychevsky & Nimrod, 2017), attitudes of heterosexual men about prostitutes (Blevins & Holt, 2009), death and expression of grief (Radford & Bloch, 2012), loneliness and isolation (Janta et al., 2014), depression (Nimrod et al., 2012), the “deep web” for drug addiction (Orsolini et al., 2017), public attitudes on assisted dying (Jaye et al., 2019), and many others.
Results
Observation and analysis of the online comments demonstrated that our five online communities serve two main functions. First, they provide a medium for followers to express their views. Second, they provide a safe forum for followers to share their personal stories, show their support, provide empathy, and to engage in outreach. The majority of shared comments referred to the contributor’s feelings and views around one’s situation with dementia. Based on partial self-reported demographic data that were made available in the text of comments (e.g., a nurse describing their relationship to the patient), shared narratives/comments mainly reflected formal and informal caregivers’ views on their own and patients’ experiences in those situations. Occasionally, there were some comments from patients in the earlier stages expressing their journey with dementia. Regardless of the content of a post being specifically about dementia or not, contributors frequently started their online conversations with a discussion of dementia—usually with a short introduction of how they relate to dementia and a description of the difficulties and challenges they are facing. The positive aspects of their journey with dementia were rarely addressed by the contributors. Our longitudinal approach (August 2016–March 2018) showed an increase in the frequency of dementia-related comments toward the end of the data collection period. These comments contained discourses about feelings and emotions, concerns and dilemmas, critiques of current assisted dying laws and the health care system, and the need for changes primarily in legislation, end-of-life care for dementia, and support for patients and their families/caregivers. From the data as a whole, the following themes and subthemes were extracted.
Theme 1: Understanding Dementia
Our online contributors had a lived conception of dementia disease trajectories, signs and symptoms, and types by virtue of living with, or caring for, individuals with dementia. Whether this understanding was clinically realistic was unclear. They often portrayed dementia as a debilitating disease that significantly affects all aspects of a person’s life, as well as those around them. To them, the gradual deterioration of the mind and body causes mental and emotional suffering not only for those with the disease but also for their families and caregivers. In that sense, dementia was conceptualized as a cruel disease because of the way it erodes the essence of those afflicted by it: Please, I have had to watch too many beloved people starve to death, their last week, before they died. My mother with Alzheimer’s dementia had to live like a vegetable for 5 years and at 50 lbs had to starve till her organs all shut down. Having worked in nursing homes with dementia residents and in a palliative ward of a hospital and having had a family member passed from dementia and terminal illness myself, you see the suffering first hand, not just of the patient but of the family as well. The angst of the family when their loved one continues to linger but are past the stage of complete consciousness, when in the ending stages. It’s heart breaking. This law needs to be changed so the option [assisted dying] is available.
Subtheme 1.1: Quality of life
Dementia can leave patients not knowing who they are, who their loved ones are, and what is happening to them. It can also take away a person’s ability to feed, bathe, and toilet themselves. Communities’ contributors stated that quality of life is often diminished for individuals who have no cognition, mobility, speech, or control over their bodily functions, but most importantly, who are unable to recognize their family, friends, or self. This was intimately tied to aspects of dignity, especially with respect to the inability of an individual to carry out self-care: My dad can’t care for himself anymore, he can’t control his bowels, and he chokes on everything he eats or drinks. No one should have to live this way, this isn’t living! I have watched my mum, dad and step-mum die of vascular dementia and there is no quality of life when a person has the inability to feed, bathe, clothe themselves and lose their memory and speech. It’s a disgrace.
A reflection on what constitutes a dignified death often arose with comments linking this to the right to die, not having someone else make that choice for you, and a good death that is free of suffering and complete dependence on others for daily care: My nan was terrified of getting Alzheimer but she did and “lived” with it for ten years in nursing homes, mistaking my dad, her son for her husband, using bedroom drawers as a toilet and many more degrading things that she would have been horrified about pre dementia before deteriorating to a skeletal figure in a chair, . . .
Theme 2: Understanding Assisted Dying Laws
Watching loved ones suffer from the consequences of dementia resulted in some family members/caregivers reflecting on their own end-of-life options, including assisted dying. The majority appeared to have a clear idea of what, if anything, their jurisdiction laws allowed regarding assisted dying.
To protect patients with dementia, and their caregivers from unnecessary suffering, the majority of the communities’ contributors believe that the legal provision of assisted dying is essential. This may relate to the view that such patients would find comfort in knowing they could control their end of life prior to losing capacity and insight: . . . I am still traumatized by my parents dying procedures. AND despair that this could be my barbaric ending. IF “end of life choices” were legalized, I could live out the remaining of my life knowing “ahead” I would be spared such disgrace.
In addition to this, the majority of contributors held the view that assisted dying laws that excluded competence-eroding conditions failed to address the psychological and existential suffering of patients who perceive they may have years of uncertainty, distress, and pain ahead, and of those caregivers who watch this suffering.
Subtheme 2.1: Rights
Unsurprisingly, contributors of the online communities generally supported the right to choose to die on one’s own terms arguing that no one but patients themselves, who know their own interests better than anyone else, should have the right to choose in advance to request an assisted death: We choose the way we live our life and I believe strongly that we should be able to choose what should happen if we find ourselves with a terminal illness, or a debilitating one, or one that takes our minds and memories away. It is a fundamental human right to choose how we LIVE our lives and that should be followed through to the end when we should have the right to end our lives. I saw my Mum slowly disappear over 5 years to dementia and a once proud woman be reduced to a non-speaking shell of the wonderful person she was. I don’t want to follow the same path and want the right to say “enough is enough” when I’m ready.
It was argued that a consequence of most jurisdictions’ assisted dying laws excludes (a) patients lacking decision-making capacity from requesting an assisted death, (b) patients having a right to choose, forcing them to endure a long and drawn-out dying—which was often perceived as meaningless, (c) an ability to be involved in their end-of-life decisions, and (d) patients ending their life prematurely while they still had the ability to do so. Contributors consistently referred to laws recognizing obligations to ensure animals do not suffer, yet the laws often do not permit a human who is suffering to be helped to die when that is their preference: . . . No one should have to suffer such excruciating indignity. We don’t let animals suffer towards the end of their lives—why, oh why do we make human suffer so?!! When she [my mum] had moments of awareness she would beg us to end her life and we had to tell her we couldn’t, it was so painful to watch and go through. We don’t let our pets go through this pain but other people tell us we have to let our loved ones live in so much pain. I think it should be up to the individual when they want to die, not to other people.
The legal requirement of having to have decision-making capacity at the time a request for an assisted death is performed was considered to be discriminatory. The majority of communities’ contributors supported assisted dying laws to include non-compos mentis patients who have previously signed advance directives that explicitly request an assisted death in their current situation. They believe that while patients are of sound mind, they should be able to make a plan in advance to determine when they would wish to die if they become incompetent: I know that my desire is a little different. I watched my mom die very slowly from dementia in 2011 and now I am my dad’s caregiver, he suffers from Lewy body dementia. I know you must be of sound mind when you make this decision. Right now I am of sound mind and I know I don’t want to suffer or cause my family this pain. I hope that when my time comes my wish will be able to be carried out . . .
In the online communities of countries that permitted legal assisted dying (such as Canada), many of their communities’ contributors wanted the legal requirements specifying terminal illness removed from legislation, or to change the classification of “terminal” to cover all other debilitating and irreversible illnesses such as dementia. They also wanted the 6-month life expectancy removed.
Subtheme 2.2: Advance directives
Although almost all contributors supported the provision of assisted death for people with dementia, they recognized the need for adequate safeguards. They strongly believed that the provision of clear AED, written by competent patients, would safeguard individuals with dementia. Not every situation is straightforward, however, particularly in the absence of written advance directives. In response to these concerns, other contributors preferred to leave the discretion to patients’ trusted family members or individuals with Power of Attorney to decide about a patient’s end of life based on their understanding of the patient’s expressed wishes and lived life.
Some objections to the provision of assisted dying for patients with dementia were also made, and although limited, they led to the following concerns being raised by some communities’ contributors: Family members or HPs might pressure their patient or family member to request an assisted death against their will; patients may change their mind as their disease progresses; and laws and regulation, however stringent, might be broadened or abused at some future point in time. Despite this, some contributors commented that the provision of assisted dying for competent-eroding conditions needs to be a legal option at the end of life. The sense of disappointment in assisted dying laws that ban AEDs was pervasive among communities’ contributors: This choice and decision can be made beforehand, in case this [dementia] happens. It is not playing god. This door needs to be opened as it is cruelty keeping someone alive after they have left and a shell remains.
Theme 3: Caregivers’ Feelings
Responses to contributors’ online comments were supportive and empathic often expressing sympathy by sharing similar experiences and telling contributors that they are not alone.
Subtheme 3.1: Psychological/existential distress
In the absence of assisted dying laws in many countries, one common option perceived by communities’ contributors at the very end of life for people with dementia was to stop all treatment (other than medicine to manage pain and other symptoms), and hydration and nutrition. Many caregivers had experienced the decision to withhold hydration and nutrition, which resulted in their loved ones “starving to death,” which was described as “torture” or “torment”: . . . I lost both my parents to dementia and watching them suffering was unbearable.
The difficulty of witnessing “pointless suffering” was repeatedly expressed by many caregivers, some claiming that their experiences would follow them for the rest of their lives. Some caregivers and family members expressed a sense of prolonged grief. They wrote of losing a loved one twice—social death and then physical death: . . . I watched my Dad, who was Superman, slowly succumb to frontotemporal dementia. I know if he had that option, that’s what he would have wanted. In pain, confused, unable to talk, etc. Watching his suffering is a kind of pain I never experienced. Now I am watching my Mom go through the same. If I am ever diagnosed with dementia, I want the option to map out my own death plan and spare my children the pain of the looonnnngggggg [long] goodbye.
Caregivers and family members also shared feelings of guilt and uselessness; guilt because they could not assist their loved ones to die as they wished; useless because they were unable to ease the pain and suffering—sometimes over many years: To my shame I let my darling husband struggle on for years with dementia. If I had to do it again, I would have HELPED him out, because he would have done the same for me. Politicians need to get a reality check along with a large dose of humanity.
The feeling of burden was also significant. The majority of caregivers did not want their families and friends to have to suffer the distress of watching them slowly deteriorate and die as they had witnessed their loved ones: . . . what I watched him go through was inhuman. The nightmares and guilt it has left me with is unbearable. While I do not regret anything I did for dad I cannot put my own children through the same things. If I am approaching the same end I will take my own life . . .
All caregivers who had gone through the process of nursing someone with dementia feared following the same path to death. Without an AED in place, they commented on their fear of an unknown fate as they are aware of the suffering one may have in years of dementia with no hope of a peaceful ending: . . . it has taken me a long time to get over their deaths (dad, mum, and brother-in-law). Now I can say that I am not frightened by death but I am frightened by the possibility of dying slowly in prolonged agony, unable to communicate, feed myself, etc. I want to have the option of assisted dying available to me so should I need it.
Theme 4: Moral/Personal Dilemmas
Online communities also provided a space that allowed their followers to express openly their emotions and personal dilemmas.
Subtheme 4.1: Suicide
Some explicitly discussed narratives of suicide attempts/plans from people with dementia, which did not go as intended either because they had lost their ability to carry it out or forgot their plan: You can only suicide yourself if you have the strength and method. My darling mother had dementia, when she knew what was happening to her she stored tablets under the sink in plastic bags. These tablets she thought were sedatives, but [it] transpired they were vitamin pills. Tragically she forgot anyway that she even had them and died of end term dementia and pneumonia ten years later after suffering the knowledge, the undignified end.
Having watched this, some caregivers stated they were fully aware that they may consider suicide well before it becomes necessary, some contemplating if ever diagnosed with dementia, ending their own lives while they still have the physical ability to do so: . . ., my mum died with Dementia and I will not die starved and choking to death not knowing my family, if I can choose how I die I will, suicide or Dignitas. . . . my mother has dementia and if I ever diagnosed with it then I will take my own life immediately even if I could still have a few decent years left rather that end up like she has and unable to get out of it.
Some reports of implicit and explicit requests from patients to help them die also arose, with contributors sharing experiences of being begged by patients and their loved ones to help them “end it”: My mother in law has dementia . . . she is constantly asking us to end her life. . .the law needs to change asap [as soon as possible]. . . . I think denial [of an assisted death] will encourage more early suicides while people still have enough physical control to do it themselves . . .
Without an AED, many caregivers found themselves in a dilemma over whether to help their loved ones to die as they had wished, or to watch them endure the dying process: . . . People are often far more damaged by having to watch their relative suffer for every last breath while they beg for release . . .
The majority of caregivers also expressed the will of their loved ones who wished to die in their lucid moments: My mum was 95 when she passed and had vascular dementia. For over 6 months every day she just wanted to die. Every day she cried. Absolutely heartbreaking.
Although family members would dearly miss their loved ones, on some occasions, they also prayed for them to die sooner: . . . she [mom] would hide her tablets etc., imagine people were in her bedroom, cooking, doing auctions, etc., . . . & deteriorated, into a bedridden skeleton which we had to watch get worse & worse!.. In the care home!! Refusing to eat/drink for that last 9 months!! (I know this sounds awful, but I used to pray for her to “go to Dad!” [pass away] but she dragged on & on!! & me knowing there was no cure or relief from the disease kept willing her to “go to Dad”!! (You couldn’t keep a dog in that condition!! Where was mum’s dignity!!?)
Discussion
The public nature of our online communities allowed anyone from geographically dispersed locations to engage and contribute together. Among these diverse populations, there is a profound fear of developing dementia and its ensuing physical and cognitive decline, which has made them consider alternative end-of-life options such as expressing their preferences in an advance directive and considering an assisted death (Hertogh et al., 2007). The fact that the communities’ contributors have been actively starting conversations about dementia may underlie an increase in public awareness and concerns/fears in relation to a dementia diagnosis (Hertogh et al., 2007; Poole et al., 2018). As the population in most countries grows older and rates of dementia increase, dementia and end-of-life decisions (including the matter of assisted dying) are likely to become more relevant to public discussion. Dementia, in this regard, may provoke feelings of loneliness, uncertainty about future decline, fear of losing meaning, control, and freedom of choice, and finally, the fear of a prolonged death. This may cause existential distress to patients and families/ caregivers (Albinsson & Strang, 2003; Farran et al., 1991; Schulz et al., 2008).
The present findings suggest that high levels of existential distress experienced by patients with dementia and families/caregivers is one of the main reasons for caregivers considering assisted dying for themselves (Tomlinson et al., 2015). Existential and psychosocial dimensions of suffering are reported to be as important as physical suffering (Albinsson & Strang, 2003; Tomlinson et al., 2015). There is evidence that Dutch physicians are mostly inclined to grant an assisted dying request when the suffering is directly related to pain or physical symptoms, rather than psychological/existential kinds of suffering (van Tol et al., 2010), but in cases of competent patients with dementia, a majority of Dutch physicians would be willing to accept an assisted dying request on the basis of present or future “unbearable refractory existential suffering” (Schuurmans et al., 2019). The fact that the gradual progression of dementia may allow the person to adapt and adjust to their changing situation (de Boer et al., 2007) does not counterbalance the impact of anticipated suffering in the future. People with dementia may experience several years of confusion, fear, and uncertainty regarding their future life (de Boer et al., 2007). Although there may well be positive experiences associated with living with and caring for patients with dementia (Lloyd et al., 2016), our communities’ contributors’ experiences and perspectives were largely negative. The importance of meaning and purpose in psychological well-being has of course been recognized for many years, in particular since the publication of Frankl’s (1985) seminal text “Man’s Search for Meaning,” (which was originally published on 1946) and later emphasized by Neimeyer (2001) as central to dealing with grief, arguing that the more a death could be placed into a coherent narrative, the easier it would be do deal with. The apparent meaningless of a drawn-out process of dying (e.g., “. . . why, oh why do we make human suffer so?!!” quote above) may have the potential to impact on the grieving process and could form the basis for further studies.
Caregivers and some early-stage patients commonly expressed difficulty assigning meaning to the suffering in the absence of capacity. Individuals find meaning by making choices and decisions and assigning values to them; these transitory experiences provide the basis to give meaning to life (Farran et al., 1991). Losing the ability to reflect on one’s past experiences may threaten the meaning of life. To find meaning in suffering, patients need to be able to communicate their suffering and to reflect on it to accept and overcome their existing situation (Farran et al., 1991). Therefore, when past experiences are no longer accessible to people with advanced dementia, and when communication and thinking processes are lost, families and caregivers may find their loved ones’ suffering meaningless. This may confirm caregivers’ belief in the rights of patients to end their suffering by requesting an assisted death (should they wish) when all hope for recovery and capacity is lost. This aspect has previously been linked to the public argument in favor of assisted dying for advanced dementia (Kouwenhoven et al., 2015).
The right to die is one of the central arguments in the assisted dying debate and issues primarily from the principle of autonomy: that individual’s choices should be respected about how they live their lives. Therefore, it is not surprising that the majority of our communities’ contributors supported an individual’s right to die in their chosen manner when expressed previously in advance directives. These findings are in line with other studies showing that caregivers supporting incompetent patients’ right to die (Braverman et al., 2017; Tomlinson et al., 2015). The majority of caregivers also supported the provision of an assisted death for themselves should they too develop dementia. A significant proportion of the U.K. and Dutch general public (Williams et al., 2007), as well as Quebecois older adults, caregivers, and nurses are supportive of the provision of assisted dying for themselves (Bravo et al., 2019) if they were to become demented. One relevant factor in their desire for an assisted death may relate to their wish of not becoming a burden to their families should they develop dementia. The fear of putting families under the mental and emotional stress of caring has been raised by the general public as an acceptable reason to provide assisted death (McPherson et al., 2007).
A different approach reflects the desire for the right to die as construed as an attempt to retain their sense of control. Hertogh et al. (2007) link interest in an assisted death for people with dementia to fear of a future with dementia, as well as a desire to preserve choice and control: “They want to remain in control of their life and future, and specifically reject the perspective of a disease that causes their identity to unravel and brings with it a loss of competence and independence” (p. 49). Being in control of one’s death is a way of exercising autonomy at the end of life, which can be retained through an advance directive. Contributors’ expression of support of assisted dying through AEDs was a declaration of an attempt to put an end to suffering while maintaining some control (Monforte-Royo et al., 2012). Consistent with the literature, our data highlight the (fear of) loss of control, autonomy, and independence associated with dementia (de Boer et al., 2007).
Over half of Quebec nurses caring for elderly people with Alzheimer’s disease, or a related disorder, reported having been exposed to a wish for a hastened death by their care recipients (Bravo et al., 2018b). Our findings mirror similar wishes, suggesting that assisted dying requests may be an inevitable challenge of end-of-life care. Advance directives for an assisted death, in such circumstances, may protect the will of patients beyond their loss of capacity without pressuring caregivers to decide on their behalf. Without such directives, the risk of a burden on proxies to make decisions on behalf of their loved ones with dementia is increased (Tjia et al., 2018).
The results also support the need for professional support to improve the quality of care for patients with dementia and their families/caregivers; such support could include end-of-life-related education, bereavement support, and more effective communication regarding treatments and end-of-life care. Resources such as palliative care may often be lacking in hospital beds, with hospices unable to meet the demand. Although hospice or palliative care potentially has a positive contribution to make, their availability may be limited or “too little, too late” (Lewis, 2014, p. 1224).
Conclusion
Our study provided a grassroots view of assisted dying in the context of dementia. The experience of living with dementia and/or caring for dementia sufferers first hand has influenced the views of many of those concerned with regard to the right to an assisted death. The feeling that their loved ones were increasingly experiencing more pain and suffering coupled with the loss of joy and dignity with no hope of recovery appears to be a turning point for the majority of contributors to see assisted death as a desirable end-of-life option. Dementia, particularly in more advanced stages, was often perceived as a disease with little quality of life, with assisted dying often being considered as a more dignified alternative. Similar feelings in caregivers of loved ones with dementia have also been reported to play a part in preferring a comfortable death over continued living at the cost of intensive or uncomfortable interventions (Lewis, 2014).
Studies also show a trend toward holding more permissive attitudes on assisted dying over time (Tomlinson & Stott, 2015). Laws in most jurisdictions, on the contrary, neither allow an assisted death for incompetent patients nor recognize an advance directive request for an assisted death. This situation has left people frustrated with some of the options they have at the most vulnerable stage of their life—one of which is to withhold life-prolonging treatments and/or nutrition/hydration (The et al., 2002), to access assisted dying prematurely while they are still competent and living a quality life (de Beaufort & van de Vathorst, 2016; Legemaate & Bolt, 2013), or, for some, to commit suicide to avoid dying with dementia (Anderson, Eppes, & O’Dwyer, 2019; O’Dwyer et al., 2016).
A meta-synthesis study on changes in family dynamics in caregiving for a person with dementia shows that caregivers lacking support from their family are likely to seek help from new social groups of people who are experiencing the same challenges (Oh et al., 2019). Our online communities appear to serve such a function, providing support, empathy, and sympathy for contributors. Communities also provide a medium for followers to narrate their stories and to freely engage in outreach to advocate for their right to die. Our study data occurred naturally where authors constructed their own meanings from these phenomena and prioritized and categorized their own narratives in their own way (von Benzon, 2019). Our data were, therefore, less contrived (Müller et al., 2016) adding perspectives of how dementia can influence public perceptions of assisted dying. The continuous efforts made by communities’ contributors to raise awareness of their dementia-related challenges and end-of-life preferences are a testimony to the need for further research and exploration in this area.
Study Limitations
The present research has a number of limitations. The first is the issue of selectivity and bias—that is, the followers who contributed to these online communities all voluntarily chose to do so and may not be representative of the general public. They are potentially more inclined to express and defend their views than those who may have a positive view or experience with dementia. The overwhelming sense that one gets from reading comments is how negative the experience of living with dementia was for the communities’ contributors. A second limitation is the use of a single platform—Facebook—to gather data. We did not include data from other online social networking sites that could have complimented or contrasted the views on assisted dying for people with dementia. Given the dominant position that Facebook holds in the social media world, however, we are hopeful that this did not produce excessive bias. Third, it is predominantly an “outsider” view of dementia and assisted dying. It includes limited data on the perspectives and insights from those living with dementia, who are facing their own decline. These limitations represent opportunities and directions for future research.
Footnotes
Authors’ Note
We came to the topic from related but separate directions; the third author, P.J.M., teaches ethics at the University of Auckland’s medical school and has conducted a number of studies into the practice of assisted dying. The second author, R.G.O., is a clinical psychologist with special interest in the field of terminal care, who has also researched the practice of assisted dying in New Zealand and who also contributed to the legal challenges in Canada which eventually led to that country’s legislation on assisted dying. The first author, A.D., is a PhD candidate in psychology at the university and the present study was conducted in part fulfillment of the requirements of this degree. Their combined interest in the ethical and practical issues involved in legal provision for assisted dying led to the present study.
Author Contributions
The corresponding author (A.D.) is responsible for the study design, the conduct of the study, analysis, and is the main author of the manuscript. R.G.O. and P.J.M. have made a substantial contribution to the conception and interpretation of data, and revising the article critically for important intellectual content. All authors have approved the version to be published.
Declaration of Conflicting Interests
The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: A.D. and R.G.O. declared no potential conflict of interest with respect to research, authorship, and/or publication of this article. P.J.M. is a member of the End-of-Life Choice Society, NZ.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
