Right to Life or Right to Die in Advanced Dementia: Physician-Assisted Dying

Abstract

A mind that could be so alive one moment with thought and feeling building toward the next step and then someone erases the blackboard. It's all gone and I can't even reconstruct what the topic was. It's just gone. And I sit with the dark, the blank." As the eminent American psychologist, Sandra Bem mused so eloquently in her writings, immediately after receiving a diagnosis of Alzheimer's (1). This anecdote very poignantly summarizes the harrowing effect dementia has on the individual person. There have been massive improvements in the health sector over the previous decades, and as a consequence people have been able to live longer and healthier lives. However, concurrently, there has also been an increase in the cases of non-communicable diseases, which includes dementia. In 2015 itself, dementia affected 47 million people worldwide; corresponding to roughly 5% of the world's elderly population (2, 3). Extensive research has been done for early and moderate stage dementia, but severe dementia is relatively neglected with very few evidence-based treatment options available. The later stages are very important because they harbor unique characteristics and events that affect not only the lives of the patients, but also their caregivers. In advanced stages, patients suffer from gradual deterioration in cognitive ability and functional impairments, which imposes a heavy burden on the public health system and families. Both direct and indirect costs of institutionalization are staggeringly large (4). These factors require a need for revision of existing health advisory and the below-mentioned concerns should be appropriately addressed before devising further health policy.

Does Alice Live Here Anymore? Autonomy and Identity in Persons Living and Dying With Dementia

“…The potential stakeholders in physician assisted death in persons with dementia may include: While all the various stakeholders (formal and informal) in physician assisted death in general, and physician assisted death in persons in dementia in particular, are divided on the ethicality, morality, and legality of the same, this had been covered reasonably well in literature (14). Of these stakeholders, however, the least autonomy (and associated decision making capacity) often rests with the person with dementia, sometimes contemporarous with late stage dementia and end of life care (11).…”

“…The question of personhood, identity and autonomy, as well as of death, and the multiple forms it takes in persons living with dementia and their caregivers becomes even more relevant in a discussion of patient rights. ( 13 ) This includes, but is not limited to the right to live vs. right to die discourse often invoked in dementia ( 14 ).…”

Physician-Assisted Suicide in Dementia: Paradoxes, Pitfalls and the Need for Prudence

“…However, in more recent times, there have been appeals to extend this practice to patients with other diagnoses, including dementia (Mondragón et al, 2019) and chronic depression or chronic pain disorders (Dees et al, 2011). In the case of dementia, arguments in favour of PAS generally center on five broad themes Jakhar et al, 2020):…”

“…However, in more recent times, there have been appeals to extend this practice to patients with other diagnoses, including dementia ( Mondragón et al, 2019 ) and chronic depression or chronic pain disorders ( Dees et al, 2011 ). In the case of dementia, arguments in favour of PAS generally center on five broad themes ( Tomlinson et al, 2015 ; Jakhar et al, 2020 ): • The economic burden posed by dementia, both at the level of individual caregivers and for society in general • The burden faced by caregivers in terms of stress, depression, time and effort needed to perform activities of daily living for the patient, and family conflicts • The distressing behavioural and psychological symptoms of dementia (BPSD) exhibited by several patients with these disorders, which often do not respond adequately to existing treatments. BPSD cause significant suffering to both patients and caregivers.…”

“…Though such findings currently apply to only a small number of high-income countries, there is a strong possibility that such practices may be considered in low- and middle-income countries, particularly in those where improved healthcare has led to increases in life expectancy and in the number of elderly adults diagnosed with dementia ( Mukhopadhyay and Banerjee, 2021 ). Though some authors have responded to such proposals with a cautious and qualified acceptance, they have also highlighted the ambiguities and ethical dilemmas inherent in such proposals ( Deodhar, 2016 ; Jakhar et al, 2020 ; Mukhopadhyay and Banerjee, 2021 ). Moreover, attitudes towards PAS in dementia are not uniformly positive even in countries where it is legal; rather, they vary according to particular psychological, cultural, religious and economic factors ( Rapp, 2016 ; Karumathil and Tripathi, 20202020 ).…”