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Address correspondence to: Lalit Krishna, Palliative Care Institute Liverpool, Academic Palliative & End of Life Care Centre, Cancer Research Centre, University of Liverpool, 200 London Rd, Liverpool L3 9TA, United Kingdom.
Yong Loo Lin School of Medicine (E.L.Y.Q, K.Z.Y.C, J.K.L., D.W.J.W., C.S.C., Y.X.L., L.K), National University of Singapore, SingaporeDivision of Cancer Education (L.K), National Cancer Centre Singapore SingaporeDivision of Supportive and Palliative Care (L.K), National Cancer Centre Singapore (L.K), SingaporePalliative Care Institute Liverpool (L.K), Cancer Research Centre, University of Liverpool, Liverpool, United KingdomHealth Data Science (L.K), LiverpoolDuke-NUS Medical School (L.K), SingaporeCentre of Biomedical Ethics (L.K), SingaporePalC (L.K), The Palliative Care Centre for Excellence in Research and Education, Dover Park Hospice, Singapore
The debate on assisted dying and its components, euthanasia and physician-assisted suicide has evolved with the emergence of the right to dignity and the wish to hasten death (WTHD). Whilst shaped by local legal and sociocultural considerations, appreciation of how patients, healthcare professionals and lawmakers relate notions of dignity to self-concepts of personhood and the desire for assisted dying will better inform and direct support of patients.
Methods
Guided by the Systematic Evidence Based Approach, a systematic scoping review (SSR in SEBA) on perspectives of dignity, WTHD and personhood featured in PubMed, Embase, PsycINFO, Cochrane Database of Systematic Reviews, CINAHL, Scopus databases and four key Palliative Care journals was conducted. The review hinged on the following questions: “what is the relationship between dignity and the wish to hasten death (WTHD) in the assisted dying debate?”, “how is dignity conceptualised by patients with WTHD?” and “what are prevailing perspectives on the role of assisted dying in maintaining a dying patient’s dignity?”
Results
6947 abstracts were identified, 663 full text articles reviewed, and 88 articles included. The four domains identified include 1) concepts of dignity through the lens of the Ring Theory of Personhood (RToP) including their various definitions and descriptions; 2) the relationship between dignity, WTHD and assisted dying with loss of dignity and autonomy foregrounded; 3) stakeholder perspectives for and against assisted dying including those of patient, healthcare provider and lawmaker; and 4) other dignity-conserving measures as alternatives to assisted dying.
Conclusion
Concepts of dignity constantly evolve throughout the patient's end of life journey. Understanding when and how these concepts of personhood change and trigger the fear of a loss of dignity or intractable suffering could direct timely, individualised and appropriate person-centred dignity conserving measures. We believe an RToP-based tool could fulfil this role and further study into the design of this tool is planned.
Until recently, the debate on assisted dying and its components, euthanasia, and physician-assisted suicide, has been largely influenced by local legal, practical, social and cultural considerations.
It has also been largely confined to patients with limited prognoses. Here, euthanasia refers to the intentional administration of lethal drugs by a physician to end a patient's life.
Obligatory consultation of an independent physician on euthanasia requests in the Netherlands: what influences the SCEN physicians judgment of the legal requirements of due care?.
However, the introduction of the right to die and the maintenance of dignity for the terminally ill has seen views and requests for assisted dying change. Hendry et al,
Why do we want the right to die? A systematic review of the international literature on the views of patients, carers and the public on assisted dying.
found that the highly individualised requests by patients and their families for assisted dying were increasingly triggered by fears or the presence of a loss of dignity.
Why do we want the right to die? A systematic review of the international literature on the views of patients, carers and the public on assisted dying.
These include irreversible physical deterioration, immobility, incontinence; failure to manage daily activities; limitations to or a loss of independence and autonomy; and/or compromises to one's personal, familial, professional, and societal roles.
Why do we want the right to die? A systematic review of the international literature on the views of patients, carers and the public on assisted dying.
Determinations of intractable and/or ‘unbearable physical or mental suffering’ associated with an irretrievable loss of dignity are especially pertinent in the Netherlands, Belgium, Luxembourg, Switzerland, Canada, New Zealand and states such as Oregon, California, Colorado, District of Columbia, Hawaii, Maine, New Jersey, New Mexico, Vermont and Washington where it could lead to legally sanctioned access to assisted dying.
revealed that concepts of dignity within the assisted dying debate are not static but dynamic, complex, highly personalised, socially informed, and context dependent suggesting that these concepts evolve over the course of a disease and in different care, health, social, relational and personal circumstances. In turn, these postulations demand holistic, longitudinal, and personalised study of dignity. However, such studies have been limited.
To help this process of understanding changing self-concepts of dignity, the research team built on links between self-concepts of dignity and notions of personhood or how patients conceive “what makes you, you” to posit that the Ring Theory of Personhood (RToP) could proffer a better appreciation of ties between self-concepts of personhood, dignity, WTHD and support or opposition to assisted dying.
Why do we want the right to die? A systematic review of the international literature on the views of patients, carers and the public on assisted dying.
Perhaps more significantly, these authors suggest that the RToP could map changes in self-concepts of personhood as patients progress along their illness trajectories, providing physicians with a unique opportunity to address changing notions of dignity and direct timely, appropriate and personalised support to stakeholders confronting concerns over losses of dignity. This could prove invaluable in the care of patients in the Netherlands, Belgium and in states like Oregon and Washington where over 60% of requests for assisted dying relate to a loss of dignity.
The RToP posits that concepts of personhood may be represented by the Innate, Individual, Relational and Societal Rings. Each ring contains specific values, beliefs and principles that inform their corresponding identities.
The Innate Identity is derived from the patient's Innate Ring which informs their thoughts, feelings, personality, narratives, conduct, values, beliefs, principles, biases, experiences, and decision-making processes in relation to their spiritual, religious and/or theist values, moral ideals, and ethical principles. The Individual Identity draws on the values, beliefs and principles surrounding the patient's conscious function contained within the Individual Ring. The Individual Identity is informed and informs the patient's narratives, experiences, and personality. The patient's Relational Identity is born of values, principles and beliefs governing their important personal relationships within their Relational Ring. The Societal Identity is shaped by the values, principles and beliefs informing their interactions with those people whom the patient deems do not share personal nor important relationships with them. The Societal Identity is also shaped by regnant societal, religious, professional, and legal expectations.
Need for this Review
Whilst it would be naïve to assume that all requests for assisted dying can be addressed through better appreciation and appropriate responses to distressing changes to self-concepts of personhood, these new insights do suggest that they may be helpful to some patients in this category, thus warranting closer attention. In the absence of studies into concepts of personhood, dignity, WTHD and assisted dying, we propose to study current arguments in the assisted dying debate through the lens of the RToP.
Theoretical Lens
The RToP's Innate, Individual, Relational and Societal elements embodies the notion of dignity as “an individual's intrinsic and inalienable right to respect, and a measure of self-worth and honour”.
’s recent review on concepts of dignity amongst patients suggests that the RToP accounts for the influence of the patient's personal history, experiences and narratives “generated in the interactions between and amongst individuals, collectives and societies”.
postulate that the four rings of the RToP are sufficiently sensitive and adaptable to detect and map changes in concepts of personhood and thus guide support of evolving concepts of dignity.
Methodology
Krishna's Systematic Evidence Based Approach (SEBA) is adopted to guide this systematic scoping review (SSR) (henceforth SSR in SEBA).
Chia EWY, Huang H, Goh S, et al. A Systematic Scoping Review of Teaching and Evaluating Communications in The Intensive Care Unit. The Asia-Pacific Scholar. In Press.
Kuek JTY, Ngiam LXL, Kamal NHA, et al. The impact of caring for dying patients in intensive care units on a physician's personhood: a systematic scoping review. 2020;15:1-16.
enabling this SSR in SEBA to map current concepts of dignity across diverse settings, cultures, healthcare systems and legal mechanisms. Critically, this approach incorporates data from traditional peer-reviewed research-based publications and information from position, perspective, conference, reflective and opinion papers, editorials, commentaries, letters, posters, oral presentations, forum discussions, interviews, blogs, governmental reports, policy statements and surveys (grey literature).
To provide a balanced review, an expert team comprised of a librarian from the National University of Singapore's (NUS) Yong Loo Lin School of Medicine (YLLSoM) and local educational experts and clinicians at YLLSoM, National Cancer Centre Singapore, Palliative Care Institute Liverpool, and Duke-NUS Medical School helped to oversee SEBA's 1) Systematic Approach, 2) Split Approach, 3) Jigsaw Perspective, 4) Funnelling Process 5) Analysis of data and non-data driven literature, and 6) Discussion Synthesis (Fig. 1).
Here we provide a brief description of SEBA's six-stages but include a more detailed description in the appendix (Supplementary File 1).
Stage 1 of SEBA: Systematic Approach
The SEBA methodology begins with the research and expert teams agreeing upon the research questions, the search terms, and the databases to be scrutinised. In this case, the primary research question was “what is the relationship between dignity and the wish to hasten death (WTHD) in the assisted dying debate?” The secondary research questions were: “how is dignity conceptualised by patients with WTHD?” and “what are prevailing perspectives on the role of assisted dying in maintaining a dying patient's dignity?”
In keeping with SEBA, a PICOs (Population, Intervention, Comparison, Outcome, study design) format was adopted to guide the research process (Table 1). There was no comparison group.
Table 1PICOS, Inclusion and Exclusion Criteria Applied to the Database Search
PICOS
Inclusion Criteria
Exclusion Criteria
Population
Patients receiving end-of-life care (i.e. palliative care patients) Patients with terminal illnesses or life-limiting conditions Healthcare professionals, defined by and limited to: doctors, nurses, medical social workers, physiotherapists and occupational therapists Caregivers
Patients of non-medical specialties such as Veterinary, Dentistry, Alternative and Traditional Medicine Patients with non-terminal illnesses or non-life-limiting conditions
Intervention
Provision of avenues to perform euthanasia (active or passive), physician assisted suicide, mercy killing
Practices such as palliative sedation Papers not mentioning euthanasia (active or passive), physician assisted suicide, or any interventions intended to prematurely end a patient's life
Comparison
Comparisons of patient, healthcare providers and lawmaker views on the effect dignity has on the want for assisted death Comparisons of patient, healthcare providers and lawmaker views on how the act of assisted dying affects dignity.
N/A
Outcome
How the preservation of dignity affects patient views on assisted death How assisted death preserves dignity
Outcomes not relevant to assisted death or dignity
Study Design
Articles in English or translated to English All study designs including: mixed methods research, meta-analyses, systematic reviews, randomised controlled trials, cohort studies, case-control studies, cross-sectional studies, descriptive papers, guidelines, position, perspective, conference, reflective and opinion papers, editorials, commentaries, letters, posters, oral presentations, forum discussions, interviews, blogs, governmental reports, policy statements and surveys. Year of Publication: 2000-2021 Databases: PubMed, Embase, PsycINFO, Cochrane Database of Systematic Reviews, Scopus, CINAHL Journals: Journal of Pain and Symptom Management, BMC Palliative Medicine, Death Studies, Palliative Medicine
Articles in languages other than English Publications before 1st January 2001 or after 31st December 2021
Independent searches of PubMed, Embase, PsycINFO, Cochrane Database of Systematic Reviews, CINAHL, Scopus databases were accompanied by hand searches of the Journal of Pain and Symptom Management, BMC Palliative Medicine, Death Studies, and Palliative Medicine. In keeping with Pham, Rajic
’s recommendations, the searches were restricted to articles published between January 1st 2001 and December 31st 2021 to accommodate existing manpower and time constraints. Quantitative, mixed and qualitative research methodologies meeting the inclusion criteria were included. With many current survey and assessment tools unable to capture the intricate connections and personalised nature of wider concepts of dignity, assisted dying, WTHD, personhood and identity, grey literature was included as a rich source of information. These resources capture wider patient, HCP and lawmaker perspectives and offer information on ethical, existential, and societal considerations often excluded by traditional systematic reviews as evidenced by recent reviews into how physicians and patients deal with death and dying and moral distress.
This saw three groups of researchers independently analysing the included articles.
The first team summarised and tabulated the included full-text articles to ensure that key aspects of the included articles were not lost (Supplementary File 2).
Concurrently, the second team analysed the included articles using Braun and Clarke
‘A systematic scoping review on patients’ perceptions of dignity’.
Directed content analysis reduces omissions of negative findings seen with thematic analysis and draws to the fore key points of discussion in regnant literature.
’s seven phases of meta-ethnography the themes and categories identified in the Split Approach were combined to create themes/categories.
Stage 4 of SEBA: Funnelling Process
The Funnelling Process employs Phases three to five of the seven phases to juxtapose the themes/categories with key messages identified in the tabulated summaries to create domains. These domains form the basis for ‘the line of argument’ in the discussion.
Results
6947 abstracts were identified from the six databases and hand searches of the four selected journals. 663 articles were reviewed, and 88 articles were included (Fig. 2). 34 articles were primary studies
Obligatory consultation of an independent physician on euthanasia requests in the Netherlands: what influences the SCEN physicians judgment of the legal requirements of due care?.
The relationship between poor quality of life and desire to hasten death: a multiple mediation model examining the contributions of depression, demoralization, loss of control, and low self-worth.
Exploring attitudes toward physician-assisted death in patients with life-limiting illnesses with varying experiences of palliative care: a pilot study.
What a wish to die can mean: reasons, meanings and functions of wishes to die, reported from 30 qualitative case studies of terminally ill cancer patients in palliative care.
Why do we want the right to die? A systematic review of the international literature on the views of patients, carers and the public on assisted dying.
The four domains identified include concepts of dignity through the lens of the RToP; the relationship between dignity, WTHD and assisted dying; patient, healthcare providers and lawmaker perspectives of dignity; and dignity-conserving measures.
Our primary research question – “what is the relationship between dignity and the wish to hasten death (WTHD) in the assisted dying debate?” – was addressed in Domains one, two and three.
Our secondary research questions – “how is dignity conceptualised by patients with WTHD?” and “what are prevailing perspectives on the role of assisted dying in maintaining a dying patient's dignity?” were addressed in Domains two and four.
Domain 1: Concepts of Dignity
Twenty-three of the 88 included articles provided a description of dignity.
What a wish to die can mean: reasons, meanings and functions of wishes to die, reported from 30 qualitative case studies of terminally ill cancer patients in palliative care.
What a wish to die can mean: reasons, meanings and functions of wishes to die, reported from 30 qualitative case studies of terminally ill cancer patients in palliative care.
What a wish to die can mean: reasons, meanings and functions of wishes to die, reported from 30 qualitative case studies of terminally ill cancer patients in palliative care.
Obligatory consultation of an independent physician on euthanasia requests in the Netherlands: what influences the SCEN physicians judgment of the legal requirements of due care?.
Why do we want the right to die? A systematic review of the international literature on the views of patients, carers and the public on assisted dying.
Why do we want the right to die? A systematic review of the international literature on the views of patients, carers and the public on assisted dying.
Why do we want the right to die? A systematic review of the international literature on the views of patients, carers and the public on assisted dying.
Exploring attitudes toward physician-assisted death in patients with life-limiting illnesses with varying experiences of palliative care: a pilot study.
Why do we want the right to die? A systematic review of the international literature on the views of patients, carers and the public on assisted dying.
Why do we want the right to die? A systematic review of the international literature on the views of patients, carers and the public on assisted dying.
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