Abstract
Interest in voluntary assisted death (VAD) has been growing among researchers, policy makers and the public. This study aimed to explore older adults’ perspectives on VAD in Australia. Using purposive sampling, 15 adults ≥65 years participated in in-depth semi-structured interviews. Interpretative phenomenological analysis identified four themes: cultural reflections; beliefs and worldviews; health aspects; and fabric of life. Participants expressed a desire to have control over end-of-life options, challenged by religious beliefs. Participants expressed concern that VAD legislation could leave people vulnerable to coercion and saw a need for safeguards. Reasons for and against supporting and utilising VAD were discussed. Physical illness was seen a more compelling reason for VAD than mental ill-health. Finally, connections to life and other were discussed, and being able to do the things one loved were named aspects of what it meant to live a good life. Implications are discussed along with future research directions.
End-of-life choices have been receiving growing interest from medical practitioners, policy makers, and the public, with attention given to voluntary assisted death (VAD). VAD refers to the process of an individual requesting help from health professionals to end their life (Department of Health, 2021). Globally, the topic of VAD is gaining increasing attention and seeking assisted death without a diagnosed medical condition is legal in some countries, including Switzerland, the Netherlands, Belgium, Luxembourg, Canada and some US states (Blaschke et al., 2019; Davis, 2019; Richards, 2017). There are, however, many countries that do not allow VAD, and there is a strong ethical debate underpinning the phenomenon (Buiting et al., 2012; Poli, 2018).
In Australia, VAD has recently been legalised in the states of Victoria, Western Australia, Tasmania, South Australia, and Queensland (End of Life Directions for Aged Care, 2021). The requirements for accessing VAD vary between states; however, in Western Australia (WA), which is the setting for the present study, as of 1 July 2021 VAD is available to people who are terminally ill (Department of Health, 2021; Parliament of Western Australia, 2019). Adults 18+ years of age who are deemed by a medical provider to have no more than 6 months left to live (or 12 months for motor neuron disease) are legally allowed to request access to medication that will cause their death. The medication may be administered by the patient themselves or by a medical practitioner (Parliament of Western Australia, 2019). Despite the growing legality of VAD, it remains a major legal, ethical and social issue, and only conservative VAD models have been approved in Australia (White & Willmott, 2021).
The main reasons cited in the literature in favour of VAD centre around avoiding pain and suffering, maintaining independence, avoiding becoming a burden on family or society, and personal choice (Chapple et al., 2006; Fleming et al., 2016). Studies have found older adults and those close to death would like to have the choice of ending their life to avoid impending suffering (Chapple et al., 2006; Fleming et al., 2016). For instance, Chapple et al. (2006) asked people close to death about their views on VAD and found the reasons for wanting to utilise VAD concerned the pain they were already experiencing and the fear of further pain. Similar findings were reported by Malpas et al. (2012), who found older adults wanted the choice to be able to end their life if they became too ill to look after themselves. These findings compliment other studies that indicate fears around pain and suffering, losing independence, and not wanting to be a burden on others in later life are reasons people support the legalisation of VAD (Fleming et al., 2016; Gandsman, 2018; Malpas et al., 2012).
Among those who oppose VAD, arguments are often based on religious beliefs and a desire to protect vulnerable populations from coercion, which may involve physical, psychological and financial abuse (Mion & Momeyer, 2019; Richards, 2017). For example, participants against VAD in a New Zealand study were worried for coercion from family members and medical professionals if the laws were to allow VAD (Malpas et al., 2014). Similarly, a review of the literature by Gramaglia et al. (2019) found members of the public held concerns about potential coercion, and such views were often held in conjunction with religious beliefs.
Debates of this nature are important as they facilitate change in legislation to better reflect public opinion (Cartwright & Douglas, 2019; White & Willmott, 2019). Nevertheless, much of the research on VAD to date has been conducted in Europe and North America, with specific populations that are either for or against VAD. This approach leads to potential bias in the findings due to socio-cultural differences and differing worldviews on end-of-life practises. With the introduction of laws that allow VAD in some Australian states, and the growing international discourse surrounding VAD, it is important and timely to explore Australian adults’ views on VAD.
Of particular importance, are older adults' perspectives on VAD. Adults over the age of 70 have the highest percentage of completed suicide globally, therefore, understanding how older adults want to end their life and their perspectives on VAD can help shape community views on end-of-life options and assist policy makers with legislative decisions (Ritchie et al., 2015). Research into the phenomenon would also encourage open conversations on end-of-life choices and may help facilitate dying in a manner that aligns with individuals’ values (Meier et al., 2016). Campaigners for VAD believe the voices of older adults have thus far been mostly absent in the debate, hence researching older adults’ views on this topic is a pressing concern (Exit International, n.d.; Richards, 2017).
The focus of the current study was to explore the perspectives of older adults in WA on VAD. The current research adds an Australian perspective, gives a voice to older adults on this subject, and invites a discussion on what it means to have control over one’s end of life.
The terms euthanasia and assisted suicide are common throughout the research on VAD, yet these are distinct concepts used to define how life-ending drugs are administered (Dees et al., 2011; Gamondi et al., 2019). Euthanasia is the deliberate act of ending an individual’s life, at their request, by a physician administering a life-ending drug (Dees et al., 2011). Assisted suicide is when the individual is responsible for self-administering the drug to end their life (Radbruch et al., 2016). In the current paper, VAD is used as the overarching term relating to both forms of assisted dying.
Unique to the current study, older adults’ perspectives on VAD were explored regardless of terminal illness. This is important, as historically much of the research has examined views on assisted death in relation to terminal illness (Blaschke et al., 2019; Richards, 2017). It is only more recently that ideas around VAD irrespective of terminal and/or life limiting illnesses have been discussed (Balasubramaniam, 2018; Richards, 2017). Interest in allowing older adults without a terminal illness to utilise VAD has been gaining attention in mainstream media and has thus become subject of greater public debate (Davis, 2019; de Bellaigue, 2019). The research question of the current study was: What are the perspectives of older adults in WA on voluntary assisted death?
Method
Approach and Design
The current qualitative study used social constructionism as a theoretical framework, interpretative phenomenology as its approach, and interpretative phenomenological analysis for data reduction and analysis. In-depth interviews were used for data collection. The IP approach helps to provide comprehensive explanations of individuals’ lived experiences (Smith & Osborn, 2015). It was used in the current study to reach an in-depth understanding of the perspectives of West Australian older adults on VAD.
Participants
Participant Demographics.
Research Instruments
Qualitative data were collected using semi-structured, in-depth interviews. Interviews were conducted face-to-face, held online using Zoom, or via telephone, all while adhering to the Australian Government’s COVID-19 related social distancing guidelines. Participants had the choice of interview platform. A semi-structured interview schedule guided the interviews. Each interview lasted between 20 minutes and one hour and was conducted in English. The interview schedule was based around the following four main questions and related probes: When I say voluntary assisted death, what comes to your mind; What is your viewpoint on voluntary assisted death for you personally; What does it mean to have a complete life; and What is your experience with end-of-life care? Interviews were chiefly guided by participants’ comments and observations (Howitt, 2016). This facilitated rapport and maintaining a conversational atmosphere. The use of prompts assisted in asking for clarifications and/or elaborations where relevant.
Procedure
Following receipt of ethics approval from the Human Research Ethics Committee at Edith Cowan University (ECU), purposive sampling was used to recruit Perth-based older adults aged 65 years and older. Participants were recruited through research flyers posted on social media and through an advertisement in a Council on the Aging WA newsletter. Potential participants were asked to contact the researchers if they were interested in taking part in the study. Recruitment was stopped once data saturation had been reached, that is, no new data were forthcoming.
After providing written and verbal consent, participants were interviewed. Interviews were held individually in mid-2020. All interviews were recorded, using a digital voice recording device, for later verbatim transcription. Participants were also given a list of telephone and internet-based support services that offer free 24-hour mental health support that they could contact in case they experienced any discomfort in relation to their interview.
Data Analysis
The interviews were transcribed verbatim. Interpretative phenomenological analysis (IPA) was utilised to investigate the data. IPA is about understanding subjective personal experiences of the world and tends to deal with important life events (Howitt, 2016). At the first stage, each transcript was read several times in its entirety. Next, important parts of participants’ discourse were highlighted, and notes were made on the transcripts in accord with the research question. Through comparing highlights and notes, major themes within and between interviews were identified and named. Next, themes were grouped together into larger categories. A theme-ordered matrix was created, which presented the unique contribution of each participant to the emerging themes and subthemes. These were re-arranged, added to, and renamed as further data were compiled and analysed. Finally, consensus about the themes and subthemes was reached among the research team, and core themes were integrated and interpreted, answering the research question.
Ethical Considerations
Ethics approval was granted by the ECU’s Human Research Ethics Committee. Participants were (i) provided with a study information letter, (ii) informed that their participation was voluntary, (iii) told that they were free to withdraw from the study at any time without explanation or penalty and (iv) informed that they did not have to answer any question they did not wish to. All participants provided written and verbal consent prior to the commencement of interviews. Addressing participant confidentiality, names and other identifying information were changed during the transcription process. Once analysis was complete, the recorded interviews were permanently erased from the recording device.
Results
Themes and Subthemes.
Cultural Reflections
Cultural identities people ascribe to impact their behaviours and values, including how individuals and/or groups view health and ageing (Gopalkrishnan, 2018). In western cultures such as Australia, individualistic values are emphasised, including self-sufficiency, freedom and autonomy (Scott et al., 2004). Participants of the current study spoke about individual choice and control over life’s decisions, as well as the value they placed on independence. Participants considered that a sense of comfort and wellbeing as well as having control over end-of-life decisions, were of high priority. When ageing related declines and illnesses are experienced in western cultures, the lack of social support, limited meaningful connections with others and a loss of purpose in life, may negatively impact emotions (de Quadros-Wander et al., 2014; Scott et al., 2004). Ambiguity was seen in the level of choice participants believed people should have around end-of-life.
Control
There were varying degrees of control participants wanted to have over their end-of-life choices. Overall, it was considered important for participants to have control, particularly if their quality of life was to decline. VAD was seen as a personal individualistic choice.
Participants felt options were more limited in later life due to physical and/or mental declines. Having VAD as a choice would help bring a sense of control and allow for alternative end-of-life services beyond those currently available. Linda said, I think it [VAD] is something that I would very much like to be able to consider… Whether or not I would choose to do it would depend entirely on my circumstances. I just think it would be good to have the choice.
Having control and choices around end-of-life care was seen as particularly important when the issues of ageing and heath were discussed. Elouise has health problems and said if her health deteriorated any further she would want to use VAD. “I want it, if I want to end my life or my friend who’s got MND (Motor Neuron Disease) and all those other people… they should have the right.”
This view was also found in a study by Poli (2018), which asked older adults still living in the community for their views on assisted dying. Many supported VAD due to fear of ‘prolonged, painful and undignified’ deaths.
Faith interacted with the desire for control. Stephanie, for example, believed that God had the best knowledge of when people’s life on earth was over, which underpinned her views on VAD. ‘I don’t believe that God is uncaring and wants people to suffer...I guess I do believe that, well, God does know the best time for people to die’.
Congruent with the current study, Richards (2017) found that many older adults wanted to exercise control over the timing and circumstances of their death. Reasons centred around feelings of uncertainty in later life, which came from a loss of independence. This was reflected in the current study where participants shared that they would like VAD as an option as it allowed maintaining personal choices, avoiding living with health decline, and having the choice to pre-plan end-of-life options.
Independence
The ability to look after oneself and to be self-sufficient was discussed by participants. The desire to remain independent predominates the literature on older adults from western cultures, such as Canada and the Netherlands (Poli, 2018). Participants believed having access to VAD regardless of health status would allow older adults the choice to end their life when they believed they were losing or had lost their independence.
Beth and Elouise both experienced periods of little independence when they had relied on others to look after them and said they would not wish to experience it again. Beth said: One of the reasons that I am so passionate about it [VAD] is because I suffered horrific injuries when I was [younger], and for three to six months, everything had to be done for me. Everything. And I don’t ever want to be in that position again.
Independence was also linked to being able to do the things the participants enjoyed in life. Examples included being able to drive a car, see friends and family, having good enough eyesight to continue reading, and/or the mental capacity to continue volunteering or learning new things. Richard said, ‘For me, when I get to a point that I can’t do what I want to do, independently, then I’m going to end it… If you can’t retain that independence, then what is the value (of life)’.
Maintaining a level of independence in later life reflects an individualistic cultural identity (Gandsman, 2018; Scott et al., 2004). Gandsman (2018) interviewed advocates who were for and against VAD in Canada. Gandsman found many people supported VAD irrespective of health status because they thought depending on others to be horrible. When Adam was asked, in the current study, about life at old age he replied: ‘I don’t want to be cared for…’
Overall, participants reflected that the best outcome was to remain independent for as long as possible and for life to end without loss of independence. This opinion was also seen in the New Zealand study with individuals who are in support of VAD (Malpas et al., 2012). Malpas et al. (2012) found participants supported VAD regardless of diagnosis of terminal illness as they did not want to lose their independence and spend later years of their lives sitting in a nursing home.
Individual Rights
Individual rights refer to people’s ability to make choices about their life free from others’ interference (Australian Government, n.d.). Participants tended to support individual rights, but within limits. Rachael remarked that those who are simply tired of life should not be allowed the option of VAD. ‘I feel if people are only sick of life and they don’t know what’s around the corner, I don’t think they should’.
Participants discussed cases where older adults ended their life without having a diagnosed terminal illness. Dr. David Goodall, who travelled to Switzerland in 2018 to end his life at age 104 years, was mentioned and participants saw his decision as reasonable considering his age. Participants said older adults should be given the option of VAD because they were nearing the end of life.
Suggesting greater individual rights for older adults to choose VAD is not a new concept. In 1991, Huibert Drion suggested an ‘end-of-life-pill’ that adults over the age of 70 would be able to obtain without needing to consult a physician (Sheldon, 2004; van der Geest & Satalkar, 2019). Although participants in the current study were in favour of allowing older adults to choose VAD, agreement on an age range was not reached, and the idea that medical professionals should not be involved in VAD was not fully supported. Support for such VAD legislation is on the rise in Europe, but many people are still uncertain about policy changes (Chapple et al., 2006; Hendry et al., 2013; van Wijngaarden et al., 2015).
Richard gave the example of a 40-year-old who was upset over a relationship breakup. He said, ‘that’s not a good reason” for wanting to use VAD. Instead of offering VAD for young people wishing to end their life, Katherine advocated the need for more “community support, mental health support and counselling’ to help alleviate suicidal ideations. Those against VAD suggest that more support is needed for all people, irrespective of age, and that facilitating adequate end-of-life care as well as mental health support would render VAD redundant (Malpas et al., 2014).
In contrast to those who supported individual rights with limits, Elouise said: ‘Whoever the person, they have the best judgement if their quality [of life] is right’. Aiden added, ‘I think it’s a person’s right to choose if they want to go… I would make that choice because I’ve seen too much of it [suffering] with my own relatives, my own wife, where there’s been pain’.
Tim noted that people who believe their life is over would use other options to end their life. Allowing individual rights on the utilisation of VAD may prevent people resorting to suicide. Tim said, ‘people shouldn’t have to make choices like flinging themselves in front of trains or wheeling themselves off the end of a jetty into the river to achieve something they want to achieve’.
Numerous studies have examined suicide in elderly populations (e.g., Draper et al., 2010; Gramaglia et al., 2019; Snowdon & Baume, 2002) and noted that many suicides among the elderly are not only linked to depression, but also to illness and disability. It is possible that, due to people living longer, adults are more likely to be living with illness and disability, which may exacerbate negative emotions and lead to individuals’ wishing to make a personal choice to end their life (Gramaglia et al., 2019).
This theme, cultural reflections, encompassed the desire for control, the value of independence, and ideas around individual rights. From an individualistic standpoints, it would seem agreeance with VAD is combined with wanting choice over the manner and timing of ones’ own death. In comparison, beliefs and worldviews can lead to adults disagreeing with right-to-die ideals, which are discussed next.
Beliefs and Worldview
An individual’s beliefs and worldview give them an overall perspective on what they understand about life and how they evaluate and respond to it (Gauch, 2009). Although participants supported the right to choose, to be independent and to assert individual rights, concerns were expressed around the ways VAD would be accessed and administered. Participants’ biggest concerns with VAD was the possibility of its misuse. Participants spoke about a need for checks and balances to ensure vulnerable people, such as the elderly, were not pressured into utilising VAD. Other checks and balances, as well as WA legislation, were discussed. Finally, religious beliefs were noted by participants as a reason for not supporting VAD.
Coercion
Coercion involves intentionally persuading someone to make a choice by use of threat or applying consequence for non-conformance (Konow, 2014). In the case of VAD, participants in the current study believed that having easier access to VAD may see some older adults utilising the service due to coercion. This was the most prominent aspect that participants stated would need to be assessed when passing any further laws on VAD. This reason for concern is critical, as our ageing population grows the prevalence of elder abuse is likely to increase (Midgley, 2017). Elder abuse or mistreatment include physical and mental abuse as well as financial exploitation (Mion & Momeyer, 2019). Participants of the current study said monetary gain would be one of the main reasons for coercion that could come from VAD laws. Elouise said, ‘You’ve always got greedy relatives, waiting in the wings… a doctor can be offered an enormous amount of money and say, you know, I want to kill my mother’.
As a way of overcoming issues with coercion, participants suggested open conversations and thorough checks with individuals. Richard suggested, ‘Asking a few relevant questions as to who’s in the will?… who thinks that you are a waste of space and needs to go? and so forth. And just dig it up’. Matthew also suggested, ‘Psychological testing… to make sure there’s no formal coercion happening’. Nevertheless, participants remained wary of coercion. Concerns of coercion and ways of protecting vulnerable populations have been addressed in the literature (Gramaglia et al., 2019). Much like the participants in the current study, Gramaglia et al. (2019) found issues of coercion and elder abuse difficult to resolve.
Checks and Balances
The checks and balances associated with VAD mostly concern what process individuals need to go through to utilise VAD. For the participants, it was important that the individual be of sound mind (compos mentis) when making decisions on end of life. Checks and balances were seen to be most important for discovering if the individual is suffering from depression or suicidal ideation. Participants thought that people suffering from mental health issues should be offered psychological help, rather than be allowed to use VAD. For example, Linda was in favour of everyone accessing psychological help before utilising VAD; ‘Unless they’re terminally ill, then yes, I would certainly say maybe you should go talk to someone’.
The WA laws on VAD have a checklist, which must be followed for a terminally ill individual to utilise VAD (Department of Health, 2021). For example, an individual wishing to utilise VAD must make several verbal and written requests and be assessed by two physicians before a decision can be made (Department of Health, 2021). When asked about the WA checklist Fred said, ‘the (WA) safeguards are over the top. But I guess we still have to have some’.
Participants varied in their suggestions for who would need to go through checks and balances before accessing VAD. For example, participants thought checks and balances were less necessary for older adults. Fred said: I guess there are occasions when I would want safeguards. And safeguards against young people, people with mental illness and depression. But people who have run their course [older] and feel that their life is coming to an end… They should be able to do it on their terms and their time choosing.
When asked if older people (over the age of 80) would need checks and balances to access VAD Richard added, ‘Nope, because you’re already at the end of your life. It’s not that you’ve got another 50, 60 years in front of you. You’ve maybe got 12 months or thereabouts’. In contrast to this Elouise suggested that having VAD open to everyone, with checks and balances, would go some way to avoid suicide in people of all ages. I think it should be open for anyone, but you have to go through those checks and balance. And I really think there would be less suicide…. you don’t have to shoot yourself in the head or hang yourself. Let’s all help you kill yourself, but let’s all go through the list and see what help we can get.
The idea that having appropriate checks and balances would help reduce suicide rates was noted by participants. As to what checks and balances might be, no specific recommendations were given by the participants. Some hinted at psychological testing for those wanting VAD. Sarah said that VAD should not be granted, ‘because they’re having a bad day or they’ve got depression or something. It has to be end of life sort of illness or something. Not just because you’re depressed… I don’t think they should make it fairly open like that’.
Stephanie, who opposed VAD, noted that checks and balances tended to relax over time. ‘The standards that are set up in the first place gradually seem to get eroded’. Le Glaz et al. (2019) noted this in an article about VAD for mental suffering. The authors state that fewer checks and balances to access VAD for differing populations (ages, illnesses, etc,) will allow for lower standards of those seeking VAD and possibly leave people vulnerable to it.
Legislation
The participants were not fully versed in the details of the WA laws on VAD. Many thought the criteria of needing to have only 6 months to live with a terminal illness may be too strict to account for all those wishing to utilise VAD. Participants seemed to be in favour of a case by case system where every individual’s circumstances were reviewed by professionals irrespective of terminal illness. Garry said, ‘I think there probably are occasions when they shouldn’t determine exactly if someone was just outside of that for whatever reason. I think any case should be taken on its merits. It’s hard to legislate for all occasions’.
When looking at legislating VAD by age groups, Linda saw the difficultly in creating laws that include specific age categories for VAD, ‘I guess it’s very difficult to legislate because… each case is individual. So, I think when you are trying to put time limits on it, that isn’t necessarily the right way to go’.
Participants in favour of VAD, particularly when associated with illness, were keen to see extensions made to the WA laws to allow for pre-planning around end-of-life circumstances. For example, participants thought laws should allow for people to plan if they were to develop Alzheimer’s. For example, Tim said, ‘You make the decision when you’re of sound mind… and then the process of VAD is carried out at a later stage’. Fred thought it was important to allow those who are suffering, but may not be terminally ill, to access VAD.
Being able to plan for end of life is seen in the literature to positively influence care outcomes by allowing personal preferences to be known and carried out (Ampe et al., 2015). Advanced care planning (ACP) is in place for many older adults yet this process does not currently include VAD as an end-of-life option in Australia (Scott et al., 2004).
Religion
Christian religious beliefs that oppose VAD were raised by participants. Some participants spoke about how their religious affiliation shaped their views on the topic, while others stated that religious values should not be enforced on others who do not hold those beliefs. Stephanie said her religious beliefs helped to shape her thoughts on VAD. My religious views are a central part of who I am… I think with any of us, our worldview, whatever our worldview is, probably affects our view of just about everything… while God has me around, he has a purpose for me being around. According to Stephanie, to utilise VAD would be to go against God’s purpose.
Garry said, ‘I used to be against it [VAD]. Mainly for religious reasons, I suppose feeling that it’s God’s prerogative when we come into the world, and God’s prerogative when we die. And I’ve lost a lot of those Christian convictions over the years’. He also explained that his views now were more centred on the individual. If someone is suffering greatly, Garry said he would be in support of VAD.
Participants of the current study expressed ideas that choice should be given to the individual and not dictated by religion. They had no problem with individuals holding religious beliefs and opposing VAD for themselves but thought that religious views and standards should not influence the availability of VAD for others. Gandsman (2016) argues that religious values opposing VAD are seen in all activism even when not overtly shown. It seems that care and concern for others and each person having a purpose in God’s eyes are the main reasons for religions to oppose VAD.
Beliefs and worldviews held by participants of this study varied. All agreed that for VAD legislation to be extended, to allow older adults to access VAD without a terminal illness, checks and balances would need to be in place. Participates also noted that the process of attaining VAD could help identify those who may have suicidal ideations and could be helped. Religious beliefs shaped how people viewed VAD and their reasons for disagreeing with or supporting VAD.
Health Aspects
Modern medicine, better overall health conditions and a decline in tobacco use have seen people in high income countries, such as Australia, living longer on average (Mathers et al., 2015). Because of this, more people are suffering from chronic illness in later life (Richards, 2017). Avoiding a long, drawn out and often painful death is one rationale for supporting VAD (Poli, 2018). In the conversation around VAD it seemed that physical illness is viewed as a more legitimate reason for utilising life ending services than mental suffering (Gandsman, 2018; Wiebe et al., 2018). The COVID-19 global pandemic enhanced people’s awareness of mental health and related services along with greater recognition of the need for understanding potential suffering associated with mental illnesses. Further understanding in this area may lead to increased support for VAD in relation to mental suffering.
Participants of the current study were also more in favour of VAD for physical illness, giving examples of cancers and diseases they would not wish to suffer. Participants did agree that VAD should be allowed for mental suffering, but with safeguards to ensure the correct use of the service. For example, someone with depression was seen to need mental health help, not VAD. Both physical and mental health reasons for supporting and wanting to utilise VAD are discussed below.
Physical
Physical suffering and pain were viewed as a more legitimate reason for VAD than mental suffering among participants. Participants seemed to connect the ageing process with illness and physical decline.
Sarah said, ‘Once you get to that age, if you are physically unable to do things. It’s very limiting to what your life quality is’. Katherine also mentioned how people are living much longer today thanks to better living conditions and modern medicine: Health is a major factor, obviously, which is why voluntary assisted dying as we know it now, is at least a step (in the right direction) … Health care now is so widespread and available. People are living when they would never have lived 15 or 20 years ago. And much better that it's [death] a short and sweet farewell than a long, drawn out suffering, which is hard for everybody.
Other participants gave clear examples of physical ailments they would not wish to live with. Elouise said, ‘If anything really serious goes wrong with me, Parkinson’s and MND (Motor Neuron Disease) …well I can’t live with that’.
VAD was seen by participants as a way of alleviating pain and suffering caused by disease and illness. Congruently, Wiebe et al. (2018) found in their study of a Canadian sample that the majority of individuals requesting VAD did so for reducing suffering related to disease.
Mental
Participants discussed mental suffering and challenges in relation to VAD. Depression and other mental illnesses were discussed, as well as individuals experiencing suicidal ideation. The participants did not fully agree with VAD for depression and thought that other options should be sought. This finding is congruent with Blikshavn et al. (2017) who argued that VAD for depression should not be allowed and that more effort was needed to bring back hope to depressed individuals seeking VAD.
Participants spoke about mental illness/mental health declines such as depression and/or suicidal ideation as well as ideas around being ‘tired of life’ or having ‘completed life’. Thoughts on utilising VAD simply because someone thought they had finished with life varied.
Adam did not agree with the ‘completed life’ reasoning for wanting VAD. He remarked, ‘I think they’re mentally not all there. The drive to stay alive is very strong. So just (saying) “Oh, I’ve had enough”… (it means) they’re not all there’.
Matthew thought differently, however, and could see why some people would choose VAD for reasons of being ‘tired of life’. He said, ‘There’s some people that have just had enough. Might have had a bad run in life, or as I said, no friends, no future chance of contributing in any way’.
Both physical and mental health illnesses/reasons were seen as legitimate factors for wanting to utilise VAD. Congruent with existing literature, participants found physical illnesses more reasonable for wanting VAD (Wiebe et al., 2018). However, with more public awareness and understanding of mental suffering, views on adopting VAD legislation may become more widely accepted (Blaschke et al., 2019). Having the capacity to engage with others and enjoy activities are some of the things that make life worthwhile, ideas on this are discussed next.
Fabric of Life
This final theme refers to meaning, purpose, and connections in life. Along with physical and mental illness, loss of social and individual connections and purpose were found to be major reasons some people would want to utilise VAD. What is meant to live a good life as well as ideas surrounding what it means to be truly living are discussed below.
Interconnectedness
Interconnectedness concerns connections with one's self, others and life in general. Participants agreed it was vitally important to have meaningful connections to make life worthwhile. These connections with others were largely viewed through relationships with family and friends, and a connection to life through doing things they enjoyed, having a purpose or contributing to society in some way. Participants found maintaining all these forms of connection became difficult in later life due to age related losses. Consequently, loneliness and isolation were seen as the biggest challenges in later life. Loss of these connections in older age was seen as a valid reason for individuals to utilise VAD. Stephanie thought that more effort was needed to help older adults maintain connection and meaning in life, rather than legalising VAD for the aged population, yet Sarah said: That’s the thing that happens a lot with older people when they get in their 90s, they look around and every week they’re going to a funeral and they haven’t got any friends. All their friends have gone, you know. So that’d be difficult… Loneliness and isolation is a big thing. And if you haven’t got family and friends, it’ll be awful, just imagine it.
Losing a sense of purpose and meaning in life was noted by the participants, especially when talking about moving into care facilities. Brooker (2008) examined studies on older adults’ perceptions on living in care homes and found similar views to the participants of the current study. Brooker found a high number of older adults felt lonely and isolated and that their life in care lacked meaning. Often older adults’ suggestions for improving conditions in the care facilities to bring about connection and enjoyment to their surroundings were not implemented. Richard felt so strongly against ending his life in a care facility that he said, ‘If I’ve got to go to a nursing home, I’m going to do myself in’.
Participants agreed that connection was most important in allowing for the best quality of life possible. Richard summed up how he felt about interconnectedness by saying, ‘Just being with the people that I love and doing the things that I love’.
Quality of Life
Quality of life involves the standard of health, comfort and happiness experienced or perceived by an individual or group (Soósová, 2016). Participants of the current study had varying responses to what constituted a good quality of life. Overall, it seemed being mentally and physically healthy, having good connections with others, and being as independent as possible were important. When these factors declined due to age related losses, participants empathised more with people who wanted to utilise VAD. Elouise said her quality of life had changed dramatically after having a near death experience. She said if her quality of life deteriorated further, she would want to end her life. When asked what it meant to have good quality of life she said, ‘Being able to have the same life you had before’. Similarly, to the participants of this study, Dees et al. (2011) found that many older adults felt their quality of life was deteriorating with age related issues.
Adam spoke about how quality of life varies for individuals; some older adults may be able to live with health-related issues, while others would prefer to use VAD and avoid suffering from ailments. Sarah added that she believed quality of life would diminish if she suffered from physical and mental declines and would want to utilise VAD. ‘When I’m sitting strapped to a chair “gaga,” that’s not quality of life, [VAD] has to happen before that. Quantity is not so important as quality’.
In comparison, Garry spoke about adaptation in old age, and how what we perceive as good quality of life needs to change as we age.
You don’t look [at] what you’ve lost. Look at what you’ve still got… I just think that life is such a precious thing. And we’re all here by such a fluke of accident… So, I value that and treasure that. And I just enjoy being part of that life and finding out more about it as I go along.
Participants saw quality of life as something deeply personal. They considered what quality of life they enjoyed at the present and speculated on how life could deteriorate for them to want to utilise VAD.
Living versus Existing
This concept was described by participants as the difference between being able to maintain connections, contribute in some way, and have a good quality of life verses isolation and stagnation. Historically, we are in a period marked by longer life expectancy (Gramaglia et al., 2019; Howarth, 2007). Australia is among counties with the longest life expectancies in the world (Australian Institute of Health and Welfare, 2020). Life supporting technologies help keep people alive, but do not always facilitate meaningful existence (Gramaglia et al., 2019; Howarth, 2007). Richard said, ‘It’s the quality of life that should really matter. Not that you are existing in a comatose bed. That’s not life… That’s existence. Nothing else. That’s not living’.
Although health factors were often seen as the major reason for wanting to utilise VAD, participants could see why some older adults would view their life as having ended irrespective of any health issues. Elouise expressed that life could be over without illness. She said, ‘If you’ve done everything you want to do and you have no regrets, I think they should be entitled to that [VAD]’.
Participants noted that being able to contribute and engage in life constituted living. By comparison, if an individual felt they had done all they wanted to do in life and were unable to contribute they were merely existing. Participants considered VAD in a holistic sense and stated that having connection with others, and being able to do the things one loves, bring about a sense of meaning and purpose. Having that sense, in turn, determines how people view their quality of life. Living verses existing was closely connected to ideas around being able to make the most of life. Participants saw merit in the end-of-life argument to support VAD in this context.
Conclusion
The aim of the current study was to explore the perspectives of older adults in WA on VAD, regardless of terminal illness. The research question was: What are the perspectives of older adults in WA on voluntary assisted death? This is an important phenomenon to research as it has been gaining scholarly and media interest, and new laws have been introduced in WA, which allow VAD for terminally ill adults.
The current study found arguments for and against VAD. Participants expressed the value of wanting control over VAD and being able to maintain independence, through the desire for personal choice to end their life when they can no longer look after themselves. Previous research has predominantly focused on assisted death in the context of terminal illness, and more recently on ideas around having the choice to end life without terminal illness, with studies asking people their thoughts on an ‘end-of-life pill’ for older adults (Rurup et al., 2005). Participants thought it was important that legislation is written to protect vulnerable people from being in danger of coercion from family members or health professionals. These findings are congruent with previous studies, which found people had concerns about coercion in vulnerable populations (Malpas et al., 2014; Richards, 2017). Examples were given of family members using VAD for financial gain.
Religious beliefs were expressed by participants of the current study. Participants said that, due to religious values and beliefs, they did not see a need for VAD, while others saw merit for VAD despite religious affiliations. Physical and mental health were also discussed. There was some ambiguity as to what constitutes a rational reason for wanting to use VAD. Participants saw the need for each case to be viewed individually. Finally, connections to life and ideas around what it is to live a good life were discussed. Participants expressed ideas around connection and gaining enjoyment from life, if those connections were lost in later life, participants said those wanting to access VAD should have the option.
The current findings contribute to the body of knowledge by adding perspectives of older Australian adults. The findings are important as they show there is interest in the phenomenon. This study adds to the public debate on VAD and could assist policy makers by giving voice to older adults. The current study is relevant due to the growing interest in end-of-life choices, coupled with an ageing population.
Limitations
A limitation of the present findings is that they are only transferable to populations similar in nature to the sample. Nevertheless, the present research had a relatively large sample size of 15 participants and reached data saturation. From social media and the Council on the Aging WA, more older adults expressed interest in being interviewed, showing an eagerness to express views about the topic. Although such eagerness may be apparent, there is a paucity of peer reviewed publications about the Australian public’s views on VAD, which has been acknowledged in recent publications (e.g., Kresin et al., 2021). Existing publications call for systematic and grass root studies such as our current article. Further, existing literature on the Australian public’s perspectives focused on VAD in the context of terminal illnesses, whereas our study sought older adults’ perspectives on VAD regardless of health conditions. Finally, the existing literature has based its findings mostly on grey literature and mass media, which limits the validity of their conclusions.
Implications and Further Directions
To overcome transferability issues with the current study, a quantitative measure was developed based on relevant literature as well as the findings of the current research. The quantitative measure is currently being utilised in a large-scale multi-method community study, which would assess the prevalence of the current findings and invite further input via open-ended questions. Having a variety of population samples complete the quantitative measure would help inform researchers of the public position and perspective in relation to VAD.
The themes that have been identified in the current study show that older adults can be for or against VAD without terminal illness. The information generated by the current study may assist policy makers and medical practitioners as it indicates there is support for VAD, provided safeguards are in place to protect vulnerable people. Regardless of its utilisation, allowing older adults the choice to decide when they die can help bring a sense of control and comfort to those who fear future pain and disability in later life.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
