Motivation and emotion/Book/2018/Assisted dying motivation

Overview


""At my age, or less than my age, one wants to be free to choose the death when the death is an appropriate time." - Dr. David Goodall"

Those are the powerful last words of Dr. David Goodall, Australian's oldest scientist who decided to end his own life at 104 in Switzerland through the use of euthanasia in May 2018. His story has since then attracted international headlines as well as further enflamed the highly controversial debates around euthanasia and the rights to die.

The issue of assisted dying has been at the centre of many heated debates for many years and is surrounded by religious, ethical and practical considerations and implications.Therefore, in order to shed light on the current topic, this chapter aims to explore the underlying motivations of the wish to control one's death.

The chapter begins with an overview of the definitions and the different types of assisted dying. The main section discusses the physical aspect that would impact an individual's wish to hasten death (WTHD) as well as two main theories explaining the psychological factors of WTHD: the Interpersonal psychological of suicide and the Self-determination theory. The chapter ends with discussion on future implications for understanding the motivations of assisted dying.  Focus questions 
 * What is assisted dying?
 * What are the motivations that influence the desire to hasten death?
 * What are the psychological implications for future research and for future healthcare systems?

Assisted dying
Assisted dying, commonly known as euthanasia or physician-assisted suicide (PAS), can be understood as the practice of intentionally ending a life in order to relieve pain and suffering (Owusu-Dapaa, 2013). Etymologically, 'euthanasia' derives from the Greek word eu, meaning goodly or well and thanatos, meaning death, hence euthanasia could be understood as a good death (McMillan, 2001). Euthanasia is most common in clinical settings, especially in palliative care, such as for people with terminal illnesses or advanced diseases. While the terms could be use interchangeably, there are some slight differences between euthanasia and PAS, mainly in the degree of involvement and behaviour.


 * Physician-assisted suicide: A doctor assists a patient to commit suicide by providing a drug for self-administration.
 * Voluntary active euthanasia: A doctor intentionally kill a patient by the administration of a drug. This would occur when a patient is too scared to carry out the act himself/ herself.

Physical factors for WTHD
Studies conducted in the early 2000s have reported that physical suffering played a large influence in patients' WTHD (Kinsella & Verhoef, 1993). A study done by Mystakidou et al. (2006) found that patients with high desire to die (DTD) reported to suffer a higher level of pain compared to patients with low DTD. Schroepfer (2007) highlighted that unbearable physical pain was regarded as a "critical event" that motivates WTHD. In terms of physical suffering, pain was not the only factor that motivates WTHD but also other physical signs and symptoms such as apnea, prolonged fatigue were also significantly associated with the emergence of a WTHD (Rietjens et al., 2007). However, more recent studies have found that while physical symptoms play a role in the WTHD, its role is not as prominent as several underlying psychological factors in explaining the roots of one's consideration for a hastened death (Monforte-Royo, Villavicencio-Chávez, Tomás-Sábado, Mahtani-Chugani, & Balaguer, 2012)

Psychological motivations for WTHD
A growing body of literature in clinical population has identified multiple motivational factors that might foster the WTHD (Nissim, Gagliese, & Rodin, 2009; Breitbart et al., 2000). Since the WTHD represents an individual’s subjective wish to end his/her life, its recurring themes showed close associations with theoretical frameworks of suicidal behaviour (Van Orden, Witte, Gordon, Bender, & Joiner, 2009). This section will focus on several theories and research explaining different motivational aspects of assisted dying.

Theoretical perspectives


The Interpersonal Psychological Theory of Suicide (IPTS) was first conceptualised by Joiner (2009) and further expanded upon by Van Orden and colleagues (2010). According to the theory, there are several chains of causation in suicidal behaviour, but there seems to be one common pathway to suicide that all varying trajectories travel through (Joiner, 2009). Therefore, the theory proposes that the development of suicidal desire derived from the coexistence of these following factors:


 * Perceived burdensomeness: The feeling of dependence that would result in frustration and feelings of guilt among care-recipient (Van Orden et al., 2010).
 * Thwarted belongingness: The psychological - painful mental state resulted from a lack of interpersonal connections (Van Orden et al., 2010).

The theory also emphasises that suicidal ideation only emerges when both of these variables are present (Van Orden et al, 2010). Additionally, acquired capability was presented as a third component explaining the transition from suicidal ideation to serious/ lethal suicide attempts. Acquired capability is characterised by reduced fear of death and increased tolerance for physical pain (Joiner, 2009). Indeed, a systematic review on the validity and reliability of the theory has showed significant three-way interaction of IPT constructs in predicting suicidal behaviour in spanning diverse samples (Chu et al., 2016).

Empirical research
Numerous research over the past decades have been investigating the influence of perceived burdensomeness and thwarted belongingness on suicide ideation and the WTHD in various settings.

Perceived burdensomeness
''"I have Alzheimer's disease and I do not want to let it progress any further. I do not want to put my family or myself through the agony of this terrible disease". - in the suicide note of Janet Adkins, who died of a self-administered lethal injection, given by Dr. Jack Kevorkian.''

In recent years, several published studies have demonstrated statistically significant associations between self-perceived burdensomeness (SPB) and suicidal ideation, particularly in clinical populations such as chronic pain patients (Kowal et al., 2012), terminally ill cancer patients (Wilson et al., 2005), and psychiatric inpatients (de Catanzaro et al., 1995). A sense of inequity was argued to be the roots of SPB. According to McPherson et al. (2010), patients or care-recipients may perceive that they were over-benefiting from the relationship with caregivers or loved ones, hence making them suffer. As expected, due to the progressive deterioration in functionality, many patients with advanced diseases rely on others for instrumental and emotional support, which then in hand could create a sense of imbalance.

The link the between SPB and euthanasia request among individuals with incurable illnesses is evident in various studies. A retrospective study done by Ganzini, Silveira, & Johnston (2002) sought to identify the factors associated with requests to assist suicide among amyotrophic lateral sclerosis (ASL) patients by interviewing 50 caregivers in Oregon and Washington, where euthanasia is legal (see further: Oregon's Death with dignity act). The study found that the feeling of being a burden to others was present in 58% of patients who expressed WTHD. Consistent with this finding, the theme of SPB also emerged from studies in cancer patients. A large sample size study of 379 cancer patients receiving palliative care in Canada, of which 22 patients reported that they might consider request PAS has shown that SPB was reported to be significantly higher among 13 of them (59%).

Interestingly, cultural factors seems to also play a role in the level of SPB. While studies in Western countries identified SPB to have a moderate contribution in the WTHD (Breitbart et al., 2000), the feeling of being a burden to others seems to play a critical role in the desires to die among Japanese patients. In a survey of 290 family members of patients who had died of cancer in Japan, a 'moderate-to-extreme" sense of burden were presented in 98% of patients who expressed the WTHD (Morita, Sakaguchi, Hirai, Tsuneto, & Shima, 2004). Therefore, not only SPB is among the principal factors related to the desire for death, but also its role remains significant across cultures.

Thwarted belongingness
While researching on interpersonal attachments, Baumeister and Leary (1995) proposed that humans have a fundamental need to belong and it would serve as a powerful and pervasive motivation. Consequently, numerous adverse effects on health and well-being would arise if this need is unmet. "I think it’s very important for every single person to feel that they belong, and, and that they fit in a community, in a city, in a country [...] once you perceive that your relationships, all the links with other living things have deteriorated, and they’re not valued, then you’ve lost face. - - quote from HIV patients (cited in Laverty et al., 2001)"

Research has found that the concept of thwarted belongingness (TB) such as social isolation, loss of community (Van Orden et al., 2010) is correlated with suicide ideation (Cacioppo & Cacioppo, 2014). Compared to other stages of life, elderly people are particularly vulnerable to the effects of social reduction, hence, many studies have linked the effects of social disconnectedness with suicidal behaviour (Fassberg et al., 2012). In a review of case control studies using psychological autopsy method, Connell, Duberstein, & Caine (2002) concluded that social isolation increased the risk for completed suicide along with poor social integration and family conflicts. Following this line, Bailey & McLaren (2005) also yielded similar results with using a community-dwelling sample of 194 older adults in Australia. In this study, suicide ideation was strongly and negatively correlated with sense of belonging (r= -.59). The researchers then hypothesised that thwarted belongingness serves as a risk factor for suicidality and the desire for an early death in elderly population.

Additionally, the pervasive relations between TB and the WTHD were also present among adults diagnosed with HIV. This was established by numerous studies produced in the 1990s, when HIV/AIDS was considered as a a global epidemic (Chin, Sato, & Mann, 1990). A study by Lavery, Boyle, Dickens, MacLean, & Singer (2001) investigated the desires for assisted suicide among 985 patients with HIV. The study found that loss of community played the biggest part in leading to WTHD (Lavery et al., 2001). Not only individuals with HIV suffered extreme physical pain, they also experienced a significant amount of stigmas and scrutinies by the public and even by their families. As a result, these experiences give raises to avoidance of community and a sense of social isolation, which ultimately fuelled the WTHD (Lavery et al., 2011).

Self-determination theory
An alternative theoretical perspective focuses on the human need to achieve optimal growth, and how it motivates people to behave in a certain way (Ryan & Deci, 2000).

Theoretical perspectives
Self-determination theory (SDT) was first developed by Edward Deci and Richard Ryan and is regarded as an important motivational theory linking personality and optimal functioning. According to SDT, there are two main types of motivation - intrinsic and extrinsic - and that the interactions between these two components shape individual's actions and behaviours (Ryan & Deci, 2000). The theory is based on the premise that individuals pursue self-determined goals to satisfy and gain fulfilment. Just as a plant needs several nutrients (soil, sunlight, water) to maintain its life and continue to grow, human also need to satisfy several needs in order to gracefully grow. Three fundamental and psychological needs identified by the researchers are autonomy, competence, and relatedness. If these universal needs are met, the theory argues that that people will function and grow optimally (Ryan & Deci, 2000).

Table 1

Three fundamental psychological needs

A fun, interesting infographic video to help gaining a better understanding in "Self-determination theory": https://www.youtube.com/watch?v=3sRBBNkSXpY&t=4s

Empirical research
In a study done by Kelly et al. (2002), it was found that elements of the self-determination theory, particularly autonomy need, were significantly associated with the wish to hasten death among cancer patients.

Autonomy
The need of autonomy concerns the need to feel volitional in one's actions, to act willingly on self-endorse beliefs and decisions (Chirkov et al., 2003). Over decades of theoretical development have established the association between psychological needs fulfilment and individual's well-being (Sheldon, Ryan & Reis, 1996). Cross-cultural examinations across eight countries also supported the positive effects of autonomous behaviours on well-being (Tay & Diener, 2011). Sheldon et al. (1996) conducted a well-known study investigating the different factors that contributes to "a good day". Researches have found that satisfaction of competence and autonomy would greatly influenced emotional well-being in that given day. While facing life adverse events, being able to make autonomous decisions could assist individuals in making self-determined choices that would help alleviate the stress, which in hand make them feel empowered.

While fulfilment of autonomy need contributes to well-being, failed satisfaction of this need has been related to several suicide risk factors in specific settings such as depressive symptoms in nursing home residents and undergraduate students (Tucker & Wingate, 2014). Using a sample of 336 students, Tucker and Wingate (2014) examined the relationship between psychological needs and predictors of suicidal desire. the study noted that thwarting basic needs would likely increase the risk of suicidal behaviour among students.

Loss of autonomy due to the gradual deterioration caused by illnesses was one of the most prevalent fears among terminally ill patients who expressed desires for an early death (Nissim et al., 2009). An early retrospective study was carried out in Oregon, one year after PAS was legalised in the United States, involving 43 cases (Chin et al., 1999). Through using structured interviews with family members of patients who had gone through with PAS, the report found that patients expressed concerns over the loss of autonomy as well as the loss of bodily functions upon requesting PAS (Chin et al., 1999). Similarly, one year later, Ganzini et al. (2000)'s study on cancer patients in Oregon also reported that loss of autonomy was frequently listed as a reason for receiving PAS (79% of the patients). Morita et al. (2004) proposed that the prevalence in patients' answers was due to the significant role of autonomy emphasised in Western cultures. Thus, this explanation was consistent with past studies on the facilitating role of autonomy on psychological well-being. Moreover, studies on physicians' attitudes toward PAS also reported the remarkable fear of losing autonomy in patients requesting PAS (Emmanuel, 2002).

While some studies focused on the perspectives of family members and physicians towards the patients' wish for an early death, other research have explored the multifactorial aetiology of the WTHD from patients' perspectives. In a recent systematic reviews of 16 qualitative studies and 94 surveys, Hendry et al. (2013) reviewed the attitudes of patients on assisted dying and have highlighted the theme of autonomy presented across numerous international papers. Alongside loss of autonomy, participants with the WTHD also expressed the desire for autonomy regarding to their death. The review noted that patients want to take control of their deaths while they were still mentally able to do so (Hendry et al., 2013). While the studies included in this review occurred in different countries, the results still demonstrated a strong effect of autonomy presented in patients' WTHD.

Integrating the IPTS and SDT
Loss of autonomy was found to be closely related to the feeling of perceived burdensomeness as the loss of bodily functions due to the illness would result in dependency on others (Monforte-Royo et al., 2011). For this reason, while examining the role of autonomy in suicide ideations, Hill and Petit (2013) have suggested two theoretical frameworks that integrate SDT with IPTS. The study also highlighted the shared associations between the constructs in each theory: PB with competence need; TB with relatedness need. The results have shown that autonomy has an indirect effect on suicide ideation via its influence on TB and PB, suggesting a relationship between the components of SDT and those of IPTS (Hill & Petit, 2013). While this study was still in its early development, the framework could be used to be better explain the patterns of suicidal behaviours among high-risk population. Brittany Maynard was 29 when she was diagnosed wit a malignant brain tumour that would kill her in six months. Facing an inevitable forthcoming death, she could not bear prolonging her life suffering from tremendous headaches, seizures, loss of control over her bodily functions, she chose to move from California to Oregon and died under Oregon's Death with Dignity Act. With the help of donations, Brittany was able to check all the items off her bucket list such as visiting Alaska, and the Grand Canyon. In her last post on Facebook, she wrote: "I somehow have my autonomy taken away from me by my disease because of the nature of my cancer"... "Today is the day I have chosen to pass away with dignity in the face of my terminal illness, this terrible brain cancer that has taken so much from me...but would have taken so much more."

It could be seen from her case is that the gradual loss of autonomy and dignity were one of the main reasons that pushed her to her final decision.

Psychological implications
Understanding the motivations for why a person would request euthanasia could assist physicians' next steps. Psychological implications for this matter could be divided in to three categories:

Conclusion
The wish to hasten death is a complex phenomenon comprising of a multifactorial aetiology. While noting that physical suffering plays a part in the WTHD among patients, this chapter also has addressed for requesting assisted dying by drawing on two main theoretical frameworks. The interpersonal-psychological theory of suicide proposes two components explaining suicidal ideation as well as the acquired capability to execute it. From this perspective, perceived burdensomeness and thwarted belongingness are what motivates people in the clinical population to consider an early death. At the same time, the Self-determination theory was regarded as a classic theory of motivation that emphasises the satisfaction of several psychological needs in order to achieve optimal functioning. The need for autonomy plays a key role in the WTHD as it is closely related to the concept of control and dignity towards the end of one's life. Therefore, through the identification of aspects of suffering among the patients, health professionals could have a better chance at providing optimal and necessary care for the patients in the palliative care setting. Future research as well as policy making could benefit from this study by improving the research methodologies on this matter and by enhancing the debate around assisted dying.