BMJ Open€¦ · 10 suicide’ (also referred to as ‘a self-chosen death’, ‘balance-sheet suicide’, ‘self-euthanasia’, ‘self-11 deliverance’ or ‘surcease’). There

For peer review only

Between intending and doing: elderly people ideating on a self-chosen death

Journal: BMJ Open

Manuscript ID: bmjopen-2015-009895

Article Type: Research

Date Submitted by the Author: 03-Sep-2015

Complete List of Authors: van Wijngaarden, Els; University of Humanistic Studies, Care and Well-being Leget, Carlo; University of Humanistic Studies, Care and Well-being Goossensen, Anne; University of Humanistic Studies, Care and Well-being

<b>Primary Subject Heading</b>:

Ethics

Secondary Subject Heading: Health policy, Qualitative research

Keywords:

ETHICS (see Medical Ethics), Health policy < HEALTH SERVICES

ADMINISTRATION & MANAGEMENT, MEDICAL ETHICS, MENTAL HEALTH, QUALITATIVE RESEARCH, SOCIAL MEDICINE

For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml

BMJ Open on June 22, 2020 by guest. P

rotected by copyright.http://bm

jopen.bmj.com

/B

MJ O

pen: first published as 10.1136/bmjopen-2015-009895 on 18 January 2016. D

ownloaded from

http://bmjopen.bmj.com/


1

Between intending and doing: elderly people ideating on a self-chosen death 1

Author names 2

1. Els van Wijngaarden MA (corresponding author) 3

University of Humanistic Studies, 4

Kromme Nieuwegracht 29, 5

3512 HD Utrecht, The Netherlands 6

Email: [email protected] 7

Tel: +31 6 83 24 84 33 8

Fax: not available 9

10

2. Prof. dr. Carlo Leget 11

University of Humanistic Studies, Utrecht, The Netherlands 12


14

3. Prof. dr. Anne Goossensen 15


[email protected] 17

18

Keywords: Elderly people; suicidal ideation; assisted dying; end-of-life; qualitative study 19

Word count main manuscript: 7377 (excl. references). 20

Page 1 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960

on June 22, 2020 by guest. Protected by copyright.

http://bmjopen.bm

j.com/

BM

J Open: first published as 10.1136/bm

jopen-2015-009895 on 18 January 2016. Dow

nloaded from



2

Abstract 1

Objectives: The aim of this paper is twofold: firstly, it provides in-depth insight in what it means 2

to live with the intention to end life at a self-chosen moment from an insider perspective. 3

Secondly, it evaluates to what extent the intentions and decisions of these older people appear to 4

be (ir)rational. 5

Methods: In this qualitative study, in-depth interviews were carried out. Verbatim transcripts 6

were analysed making use of the principles of phenomenological thematic analysis. 7

Participants: 25 Dutch elderly citizens (mean age of 82 years) participated. They were ideating 8

on a self-chosen death because they considered their lives to be no longer worth living. Inclusion 9

criteria were that they: 1) considered their lives to be ‘completed’; 2) suffered from the prospect 10

to live on; 3) currently wished to die; 4) were 70 years of age or older; 5) were not terminally ill; 11

6) considered themselves to be mentally competent; 7) considered their death wish as reasonable. 12

Results: Living in-between intending and actually performing a self-chosen death is 13

characterized as a constant feeling of living in a paradoxical position, explicated in the following 14

themes: 1) detachment and attachment; 2) rational and non-rational considerations; 3) taking grip 15

and lingering uncertainty; 4) resisting interference and longing for support; 5) legitimacy and 16

illegitimacy. 17

Discussion: Our findings show that the in-between period emerges as a considerable, existential 18

challenge, with rational and non-rational concerns and thoughts, rather than a calculative, 19

coherent sum of rational considerations. It also highlights the need of due consideration of all 20

nuances and ambiguities relating a rational and well-considered wish to die which need to be 21

Page 2 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



3

taken into consideration in order to develop careful policy and support for this particular group 1

of elderly. 2

3

Strengths and limitations of this study 4

• This study gives voice to elderly people (70+) who wish to die – preferably with medical 5

assistance – while they do not suffer from a life-threatening disease or a psychiatric disorder. 6

• This study is the first to elucidate what it means to live in-between intending to perform a 7

self-chosen death and actually doing it. 8

• This paper is of relevance to a breadth of health professional. 9

• It highlights the need of due consideration of all nuances and ambiguities relating a so-called 10

rational and well-considered wish to die to align conscious policy and support to the needs of 11

this particular group of elderly people. 12

• Although one-to-one transferability to other countries is limited due to cultural differences, 13

the Dutch discussion may inform the debate on (legalization of) assisted dying in other 14

Western countries. 15

Page 3 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



4

Introduction 1

It is not a question of dying earlier or later, but of dying well or ill. 2

And dying well means escape from the danger of living ill. 3

(Seneca) 4

The past decades have seen a rapid increase of life expectancy and longevity. Despite all the 5

advances in healthcare and medical technology, old age is quite often accompanied by loneliness, 6

age-related problems and disabilities. These problems have an influence on the perceived 7

physical and mental health in older people, threatening their capacity to maintain meaning and 8

purpose (Seale, 1996). This raises the question whether a longer life is associated with more 9

years of life quality, or whether it is rather associated with increased feelings of dependence and 10

prolonged disability. Indeed, the suggestion that medical science has made it possible to sustain 11

human existence past the point where a competent adult might rationally conclude that life is no 12

longer worth living, is subject of considerable debate in the discussion on elderly and a self-13

chosen death 1. 14

There is discussing about whether legalizing assisted dying for terminally ill people is part of 15

good care 2 3, but what about elderly people without a terminal illness? In the Netherlands, one of 16

the few countries in the world that have legalized euthanasia and assisted dying under strict 17

criteria, there is considerable debate whether elderly aged 70+ who consider their lives to be 18

completed, should have legal options to ask for assisted dying 4 5. In 2010, the Right-to-Die-NL 19

started a campaign ‘Out of Free Will’ and placed this discussion on social and political agendas. 20

Based on a ‘rational and well-considered choice’ elderly should have legal options for assistance 21

with the termination of their life, they plea. Under current Dutch legislation, however, most of 22

the concerned older people are not in the position to have a legal right for euthanasia, as they do 23

Page 4 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



5

not meet the criteria specified in the Dutch Termination of Life on Request and Assisted Suicide 1

Act: the conviction that the quality of life has diminished to such an extent that elderly people 2

prefer death over life, does not constitute legal grounds for assisted dying, as they do not suffer 3

unbearably without prospect of improvement from a medical perspective 6. Thus the Right-to-4

Die-NL pleas for further relaxation of the euthanasia criteria for the benefit of this group and 5

aims to make ‘self-determination of life’s end a reality’ 1. 6

The plea that elderly people should gain the right for assisted dying based on a ‘rational and 7

well-considered choice’ presupposes that ending one’s life can be considered as a rational and 8

autonomous choice, even if one is not terminally ill. In the literature, this is termed ‘rational 9

suicide’ (also referred to as ‘a self-chosen death’, ‘balance-sheet suicide’, ‘self-euthanasia’, ‘self-10

deliverance’ or ‘surcease’). There has been considerable debate among those in favour of 11

‘rational suicide’ 7-10

and those opposing 11-15

. While both sides in the debate argue their case 12

based on ‘the good of humanity’, there are indeed considerable differences. 13

Authors who judge ‘rational suicide’ in old age as an honourable and sane choice underline 1) 14

the individual’s moral right to self-determination; 2) the logical, understandable outcome of the 15

balance sheet: as one ages, the negative points accumulate to such an extent that death becomes 16

preferable to life and; 3) the evil of needless suffering; and 4) the possibility of satisfaction and 17

empowerment if one exerts control over one’s death. According to the proponents, criteria for 18

assessing suicide as ‘rational suicide’ are that people have an unremitting hopeless condition; 19

make a realistic assessment of their situation; are able to make a free, autonomous choice; are 20

able of sound reasoning (which implies the absence of severe psychological illness or emotional 21

distress influencing the decision); have adequately considered possible alternatives; and act in 22

consonance with their fundamental values. 23

Page 5 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



6

Authors opposing ‘rational suicide’ in old age mainly use the following arguments: 1) the 1

psychological argument; 2) the ageism argument and 3) the slippery slope argument. Primarily, 2

some authors fundamentally question whether deliberately ending one’s life can or should ever 3

be seen as a rational decision: is it possible to distinguish ‘rational suicide’ from ‘pathological 4

suicide’ or should suicide be prima facie associated with mental instability? Next, the ageism 5

argument argues that supporters of ‘rational suicide’ build their arguments based on an ‘ageist 6

bias’, which means that old age is wrongly associated with being a burden (on the personal, 7

relational, societal and economic level), with unvalued status and great inconvenience. Death is 8

offered as a solution for the problem of age-related suffering “that is perceived as insoluble” 14, 9

while improving the conditions of those older people might lessen the wish to die. And lastly, by 10

using the slippery slope argument, several authors notify the risk of the deteriorating respect for 11

the value of human life and ageing, and the risk of societal values shifting from recognition of an 12

individual’s right-to-die to a climate enforcing a societal obligatory duty to die 11. 13

Many studies on the topic of ‘rational suicide’ in old age focus on theoretical, ethical and legal 14

argumentations. In fact, we found no empirical studies that explore the experiences and struggles 15

of people ideating on a self-chosen death from an insider-perspective. For developing conscious 16

policy and good care for this group of elderly people, however, it is essential to understand how 17

these elderly people experience their lives: what it means to live with the intention to end life at a 18

self-chosen moment; how they make sense of their experiences; and to what extent their wish 19

can be considered as truly rational. This particular paper has two purposes: first, it provides in-20

depth insight in what it means to live in-between intending to end life and actually performing a 21

self-chosen death, by giving insight in the tensions and polarities of living towards this ultimate 22

decision, Secondly, it aims to deepen the scientific theoretical understanding of ‘rational suicide’ 23

Page 6 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



7

by evaluating to what extent the intentions and decisions of these older people appear to be 1

(ir)rational. This insight can contribute to a deeper understanding of the lived experiences of 2

elderly people with a wish to die and point the way to align support required. 3

Methods 4

Sampling 5

This study is a qualitative in-depth interview study of twenty-five older people ideating on 6

manners to end life at a self-chosen moment. It is part of a more extensive research project that 7

aims to elucidate the experiences of elderly who wish to die because they consider their lives to 8

be completed and no longer worth living 16 17

. Between April and September 2013, research 9

advertisements including a short description of the research project were placed in magazines 10

targeting older people. Elderly who wished to die because they felt their life was completed were 11

invited to participate in an in-depth interview. The inclusion-criteria were that participants: 1) 12

considered their life as ‘completed’; 2) suffered from the prospect to live on; 3) currently wished 13

to die; 4) were 70 years of age or older; 5) were not terminally ill; 6) considered themselves to be 14

mentally competent; 7) considered their death wish as reasonable. One hundred forty-four people 15

responded by post, email and telephone. After personal contact between the first author and the 16

respondents, twenty-five participants were purposefully sampled, based on the information-17

richness of the cases; differences in (physical) health; different ideological and demographic 18

backgrounds; and nationwide coverage. All participants were provided with detailed written 19

information about aim and procedure of the study, the right to withdraw at any time and the 20

possibility of after care if needed. All participants signed a consent form and were assured that 21

their name and identity would not be disclosed. 22

Page 7 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



8

Data collection 1

The interviews took place from April to December 2013 in participants’ own home and lasted 2

two hours on average. The main objective of the interviews was to explore the experiences of 3

elderly people who feel ‘life is completed and no longer worth living and wish to die at a self-4

directed moment’ from an insider-perspective. The interviews had an open structure. Guiding 5

questions were: “Can you describe what it means to experience that life is completed?”; “Can 6

you describe what it means to have a strong desire to die?”; “Can you describe as fully as 7

possible how this experience influences your daily life?”; and “What does it mean to live with 8

the decision to end life at a self-chosen moment?” The interviewer tried to empathically engage 9

with the participants and encouraged them to narrate about their experiences in detail (See for the 10

complete interview guide Appendix 1). The interviews were audiotaped and transcribed verbatim. 11

During and immediately after the visits, observational notes were made about contextual 12

characteristics, the atmosphere and relevant non-verbal expressions to be able to understand the 13

interview in its context. Participants were asked to fill in a personal background information 14

form. To get an indication whether the wish to die was driven by a severe depression or not, they 15

were asked to complete the Hospital Anxiety and Depression Scale (HADS) 18. 16

Statement of ethical approval 17

The Medical Ethical Review Committee UMC Utrecht evaluated this study. This committee 18

confirmed that the Dutch Medical Research Involving Human Subject Act (WMO) did not apply, 19

as participants were not patients but mentally competent citizens, and participants were not 20

subjected to treatment or required to follow a certain behavioural strategy as referred to in the 21

WMO (art.1b). Subsequently, official approval of this study was not required (protocol: 13-22

176/C). 23

Page 8 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



9

Data-analysis 1

The first analysis of all 25 interviews contributed to an earlier study which resulted in the a 2

phenomenological characterization of the phenomenon ‘life is completed and no longer worth 3

living’ 16. For the purpose of this study, all interviews were re-analysed now focusing on the 4

research question of what it mean to live with the decision to end life at a self-chosen moment. A 5

phenomenological thematic analysis 19-21

was used to explore what it means to live in the in-6

between period between deciding and actually performing a self-chosen death. The analysis 7

followed a semantic, inductive approach 20, which means that identified themes are strongly 8

experiential-driven and grounded in the data themselves rather than theory-driven. The analysis 9

consisted of different phases (as described below) which should not be seen as a strict linear 10

process, but more as a recursive process, characterized by a constant forward-backward 11

movement between the entire data-set, the coded extracts, and the descriptive analysis in 12

progress. Atlas.ti 7.5 was used as an assisting tool to compare themes and meaningful fragments. 13

First, the researchers tried to familiarize with the data by repeated and active reading of the 14

whole data set. Interpretation was discussed within the team. Afterwards, a narrative report was 15

written of each interview and sent to the participants for member check. Next, an inductive, 16

bottom-up search for themes related to the research question was undertaken. Text elements were 17

coded. Then, to form themes, codes were combined and summarized in main themes and 18

subthemes. In the next phase, the themes were reviewed in search for a coherent and valid 19

pattern: the themes should form an accurate representation of all meanings evident in the data set. 20

Categories were judged by two criteria: internal homogeneity (i.e. the extent to which the data 21

are internally consistent) and external heterogeneity (i.e. the extent to which the differences 22

among the themes are bold and clear) 20. When needed, a theme was refined and nuanced. 23

Page 9 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



10

Writing was an integral part of analysis, not something that took place at the end, as the writing 1

process itself deepened our understanding, clarified meanings and highlighted layers and 2

polarities in the data 20 22

. Proceeding findings were mutually discussed between all authors, 3

revealed a high consensus and some minor discrepancies led to a more precise definition of the 4

themes. Inter-subjective reliability was sought throughout the analytic process. 5

Sample description 6

The sample comprised of eleven male and fourteen female participants, with a mean age of 82 7

years. Eighteen participants had no partner (widowed, divorced or single for life). Fourteen 8

participants had contact with their children, nine were childless. Most participants lived 9

independent or semi-dependent. Twenty-three participants had had a paid job; only two female 10

participants were primarily involved in the household and voluntary work. Ten participants 11

reported having no serious illness. The other fifteen mentioned several physical problems (such 12

as sensory disorders, serious itchiness, chronic fatigue, arthritis, diabetes, and valvular heart 13

disease) relating more or less to their wish to die. The outcomes of the HADS 18 were that most 14

participants’ had ‘no’ or ‘mild’ indication for depression. Only one ‘severe’ plus two ‘moderate’ 15

indications of possible diagnoses of depression were found with the screening instrument used. 16

Twenty-three participants were been active members of a Dutch right-to-die organisation. They 17

supported the public debate on further relaxation of the Dutch Euthanasia Act and favoured 18

change of policy and law. They plead that elderly people (70+) should have a right to assisted 19

dying, even if their only adverse condition is old age and the danger that they might lose control 20

of their mind and body. 21

22

Page 10 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



11

Results 1

In this section, the themes found within the data are described. For all included older people, the 2

in-between period between the firm intention to end life at a self-chosen moment on the one hand 3

and the whether-or-not-choice to actually terminate life on the other hand is characterized as a 4

constant feeling of living in a paradoxical position expressed in words like: “dilemma”, 5

“tension”, “doubt”, “struggle”, “a difficult balancing act”, “a quandary”, “holding a splits 6

position”, “an unsolvable problem”, “caught in two minds” and “a contradictory process”. 7

Below, this paradoxical position is explicated in the following polarities: 1) detachment and 8

attachment; 2) rational and non-rational considerations; 3) taking grip and lingering uncertainty; 9

4) resisting interference and longing for support; 5) legitimacy and illegitimacy. 10

1) Detachment and attachment 11

All participants felt ready to give up on life based on a strong sense of detachment: they felt 12

disconnected from their actual life and they lived with constant anxiety for the future and further 13

deterioration. While a considerable concern of participants was the maintenance of control over 14

their own life, in contrast, they sensed an inevitable loss of grip. This declining physical capacity 15

threatened their independence and dignity. The interviews portray participants as deeply 16

concerned to find a way that spares them from further suffering: “I just want to keep myself safe, 17

you know”(i_20). For most, a self-chosen death seemed to be the most preferable option to flee 18

from life as-it-is or as-it-comes: “It’s a duality. That’s why I rather prefer to flee. And dying is 19

the best method, as far as I’m concerned. I'm not afraid to die. I've never been afraid to 20

die”(i_10). One participant told about her yearning desire to die: “Sooner rather than later! You 21

know, I told my friend: keep in mind, when I am death, you fly the flag!”(i_17) Death was often 22

Page 11 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



12

associated with the end of suffering, a release of distress and humiliation, a state of rest and 1

peace, an endless sleep, and in some cases reunification with beloved ones. 2

Simultaneously however, the tendency to postpone death - due to certain attachments to life - 3

was also explicitly common in participants’ stories. They mentioned several attachments such as 4

physical vitality, responsibilities and duties towards themselves and others, and religious 5

conscientious objections. Several participants told that they still sensed a physical drive to live 6

on, regardless of their wish to die. They still enjoyed good food and drinks and wanted to feel 7

comfortable in their body. One participant told: 8

I feel like I’m holding a splits position. On the one hand, I certainly want to die. My life is 9

totally pointless. On the other side though, there is simply too much physical, intuitive life 10

force. (...) So you just live on, you breath, you eat and uh, take care of yourself. I mean, if 11

you really want to quit, you would stop eating, won’t you? (…) But that physical body of 12

mine tells me: “I’m hungry for a sandwich.” So, I take a sandwich. (…) That's the 13

dilemma I’m living in: you rationally want to die, but at the same time, there’s that 14

unbreakable will to live. I’ll get the feeling, I’m in a quandary.(i_4) 15

Experiencing a sense of paradoxical physical attachment was not only about satisfying a healthy 16

appetite. Several participants told about exercising once a day to keep them fit and vital. One 17

woman seriously considered a hip replacement operation to increase her mobility and 18

independence, while also making plans to terminate her life. Another woman who desperately 19

wished to die told about her “inconsistent” efforts to strengthen her physical health: 20

All the time, I’m thinking: How to die? The only hope I have is that a car runs over me. 21

Or when I hear about an airplane accident, I think: Oh, if only I was in that plane! It’s 22

Page 12 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



13

crazy, you know, because at the same time, I joined a gym to stay vital and independent 1

as long as possible. But by strengthening my health, I prolong my life and postpone my 2

death. So I'm caught in two minds: I hate sluggishness, so I try to be as healthy and vital 3

as possible (…) but the other hand I think: How to die when I feel so vital?(i_22) 4

Other participants felt disconnected from certain responsibilities towards themselves and/or 5

others. A woman, who took all necessary precautions and even fixed “a provisional date” for 6

her death in agreement with her children, was still the initiator in the set up of so-called ‘villages-7

in-the-city’ to strengthen social bounds in her neighbourhood, as she was concerned about “her 8

own safety”. Two other participants were still looking for some “meaningful voluntary work” 9

(despite they actually gave up any hope to find it) and at the same time, they were preparing a 10

self-directed death. Two men told that they needed to postpone their self-chosen death because 11

of their “duty to care for their partner” while both were fully prepared to organize their own 12

death “as soon as possible”. A man, who was deeply concerned about the emotions of his 13

children, put his doubts this way: 14

…If they all show the same emotions as my daughter, I don’t think I can handle it. Then 15

I’ll probably give up my freedom to decide in favour of my own life. Because then, I’m 16

confronted with so much sadness, I just can’t handle that… (...) You’ll hurt someone 17

while it’s not necessary, because I don’t have to commit euthanasia. No one forces me. 18

(...) It’s voluntarily. So when I see their sorrow, then well, I actually think, I’m a bit of a 19

coward. (...) I choose the path of least resistance. I'm going to solve my problems by 20

taking a lethal dose of medicine. It’s an escape off all my concerns. (...) But in a way, I 21

abandon them. (…) If I die from a cerebral haemorrhage or from an unhappy road 22

crossing, sure I'm dead too. But, you know, this is voluntarily…(i_10) 23

Page 13 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



14

Three women explicitly expressed a dilemma associated with their spiritual beliefs. The idea of 1

karma or God withheld them so far from performing a self-chosen death, despite yearning for it. 2

Two of them were afraid that “a self-determined death goes against the stream of life”, thus is 3

“bad karma”, so consequently, they expected that if they would kill themselves, they would 4

have to “pay” for it next life. Another woman, who believed in a personal God, told: 5

Yeah, it’s a matter of conscience eh. My ego feels ready to give up on life, but I cannot 6

reconcile it with my conscience, as my heart says: “No, you shouldn’t do that, it’s against 7

God's will!” (...) It’s a dilemma. I live in it. Actually, I'm stuck in it. (...) I've read a lot of 8

books about near-death experiences. People arrive in the other world but then they are 9

often sent back, because it's not time yet. So how can I decide it’s my time? But on the 10

other hand, I truly feel my life is completed. (…) It’s quite ambiguous.(i_24) 11

This polarity between detachment from life and attachment to life recurred throughout 12

participants’ accounts, and was indicated by them as “plainly discrepant”, “inconsistent”, 13

“confusing” and in some cases “annoying”. 14

2) Rational and non-rational considerations 15

In participants’ accounts, there was a recurrent sense that on the one side their wish to die was 16

entirely of their own rational volition, but on the other side, they felt influenced by an inner and 17

much more uncontrolled compulsion. All participants expressed feelings of strong determination 18

and willingness to end their lives. They ‘reasonably’ considered their lives to be over and no 19

longer worth living, based on a negative outcome of “rationally” weighing the pros and cons of 20

living on: “There’ s nothing really that keeps me alive”(i_4). “It is just so totally logical”(i_5). 21

“I just don’t know how I can keep my existence upright any longer”(i_15). A lady, suffering 22

Page 14 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



15

from several physical discomforts, said: “You know, what kind of life is this? I don’t want to die, 1

but my life is simply unliveable”(i_1). She summed up all her physical sufferings: hearing 2

problems, plus bad sight, plus the discomfort of diverticulosis, plus terrible itching, plus the 3

intense pain from some vertebral fractures, and then she firmly concluded: “Death is just most 4

preferable!”(i_1). Another participant told about his readiness in an almost calculative way: 5

There’s just no reasonable need to wittingly burden others with my misery, is there? 6

Nobody wants to be a burden. I have no family nearby. It’s just about preventing myself 7

of a collapse into misery. It’s just unnecessary, so I try to avoid it.(i_25) 8

When participants talked about this weighting and balancing, most elderly people stressed the 9

rationality of this process. Simultaneously though, they all talked about being driven by bodily or 10

emotional compulsions as well: “It’s just a mix of rationality and emotionality”(i_15). The 11

majority of participants explicitly told that they “panicked” and almost “drove mad” by the idea 12

of living on much longer. One woman questioned her rational choice and interpreted it more as 13

an inner compulsion, as she said: “Choice is a difficult word. I’m also forced by myself”(i_9). 14

Another woman, living in a nursing home, decided to gradually stop with taking medicine under 15

doctor’s supervision, because she felt that her life was no longer worth living. She illustrated the 16

polarity between ‘rationally knowing’ on the one hand and an inner uncontrolled process on the 17

other hand, with these words: 18

Now I’ve already reduced two pills daily: the blood thinners and stomach protectors. (…) 19

They [the doctor and the nurses] know, that if something happens to me, they shouldn’t 20

drag me to the hospital, I don’t want it anymore. (...) In the morning, I’ll take my heart 21

pills. Those will be the last to stop with, that will cause a lot of pain, but then they’ll give 22

Page 15 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



16

me morphine of course. I know exactly what I want. “It’s a difficult but brave struggle,” 1

the nurses say. But I don’t think it’s brave. It’s just woven into my brain. I can’t help it. 2

The thoughts constantly come into my mind.(i_13) 3

3) Taking grip and lingering uncertainty 4

With regard to the ‘organisation’ of the self-directed death, both feelings of certainty and 5

uncertainty emerge. The idea of maintaining and regaining control by organizing a self-directed 6

death is present in most accounts: participants hoped to die before they further lose grip, and 7

organizing things gives them a sense of certainty, control, rest and relief. They talked about 8

consulting a right-to-die organisation to contact a counsellor for personal advice, to gather 9

information about methods for hastening death, self-euthanasia and ways to order the right doses 10

medicine, or to check the authenticity of online-ordered medication. 11

For sure, it feels very relaxed that I’m totally in control now. It's just about putting the 12

liquid in a little bowl with some fruit custard and then eating it, and in about half an hour, 13

I’m gone... I ordered an extra large doses [of lethal liquid], and the bottle is well packed 14

in plastic, so nothing can happen to it. Before I got this, I first bought hundreds of pills 15

online and I fooled my own doctor to gather sleeping pills as well. Then [after I managed 16

to collect the right medicine] another method was introduced with helium gas. So I also 17

purchased two bottles of gas, a plastic bag and a DVD with an introduction on how-to-18

do-it. It’s all in the closet on the other side of the room. But then, suddenly this liquid was 19

promoted, somewhere in an article [in a right-to-die magazine], so I ordered it and, you 20

know, finally I feel safe. They even tested it! You know, [with those other methods,] I was 21

still afraid something might go wrong. But this is so easy, you know, just a nice bowl of 22

custard, that’s all! I'm really relieved now.(i_23) 23

Page 16 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



17

Participants were pro-actively busy completing all kind of arrangements to put their personal 1

affairs in order “as well as possible” before they died. Several participants talked about 2

organizing a complete house clean-up, throwing away stuff that was no longer needed, tearing 3

photo’s, letters and official documents like diplomas. One man purchased a paper shredder to 4

destroy all his paperwork. “It’s a way of making your place empty”. Most participants already 5

bequeathed a legacy for their bereaved. In addition, some talked about giving away valuable 6

things to meaningful others by themselves while they were still alive. One woman even bought a 7

new house and fully refurbished it to give it to her children as a remembrance gift after she died. 8

The majority kept a record of (funeral) wishes, in some cases they compiled an extensive wish 9

list regarding a “beautiful farewell”: from song-choices, to self-written poems that should be 10

read at their funeral, and carefully thought out rituals. To ensure that their will would be 11

respected in future situations, respondents signed all kinds of documents such as an advanced 12

directive describing treatment preferences (and refusals), a do-not-resuscitate order, and in some 13

cases a written euthanasia request defining the precise circumstances (such as suffering from 14

dementia) in which they would wish euthanasia to be performed. Several participants appointed a 15

proxy as attorney to manage their affairs in case they lost competence. 16

Despite all efforts made to ensure the course of their end, the majority of participants still 17

expressed feelings of worry and uncertainty about the dying process; especially about the extent 18

to which they would be able to stay in charge till the end, about whether they would succeed in 19

avoiding a painful death, and about the “right method” for self-euthanasia. A woman who 20

formerly suffered from a heart attack and had taken all possible precautions to make her wishes 21

for future treatment known, told: 22

Page 17 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



18

Well anyway, it’s loneliness and fear, anxiety you might call it. Look, I’m still sharp of 1

mind, but if only I would suffer a terrible stroke again, I’ll probably lose my mind… 2

Surely I want to avoid that! (…) Yes, it’s still in my mind, images of fear might be a bit 3

exaggerated, but certain images frequently appear in my mind: it can happen to me 4

again. And the big question is: who will help me? Really, who will help me then? So I just 5

want to keep ahead of that.(i_20) 6

Another woman who desperately was longing for death and gathered lots of information about 7

self-euthanasia, still took her “life-saving medication” because she was afraid of the dying 8

process itself: 9

I suffer from heart failure, (…) but still I take medication. That's a bit contradictory. (…) 10

I definitely do want to go to the other side where all my loved ones are, though I’m 11

scared to death for the cross over. If only it wouldn’t be too painful, oh dear, oh dear! 12

(...) So, it’s just that fear. I'm so afraid to die of suffocation. But still, it’s contradictory. 13

Because if you truly would like to die, you would say: “Well, it might be very nasty, but 14

I’ll just do it”. But I so deeply want to die in a gentle way...(i_21) 15

Many participants also explicitly talked about their anxiety that self-euthanasia might go wrong. 16

Several questions echoed through many stories: “How to get the pills in the first place?”; “How 17

to be certain that I’ll get the right (amount of) pills?”; “Do I have reliable internet addresses?”; 18

“How to be sure that I don’t damage my body unrecoverable or end up in a coma?” and; “How 19

to be sure that I don’t burden others with deep grief or trauma”. For some participants, it 20

became almost an obsession: 21

Page 18 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



19

It's a problem that is constantly in my mind. And there is no solution. It's like, if you have 1

lost your keys, you keep searching them until you finally recover them. At least, that’s the 2

way it goes with me. “Good heaven, where did I leave that key?” Anyway, it lingers, it 3

remains constantly in your head as something insoluble. Well, it’s the same right now. 4

It’s an on-going, underground search for possibilities: I might try this again, and give 5

that another check…(i_4) 6

While he took all kinds of preparations and precautions to take grip of his situation, this lingering 7

uncertainty was playing tricks on him continuously. 8

4) Resist interference and longing for support 9

For the majority of participants, self-determination, independence and autonomy were core-10

values and an essential prerequisite for a happy life. They placed great value on their individual 11

freedom, running their own affairs. “It’s about freedom. Full freedom. And now, I want to keep 12

that freedom, which I’ve always had, to die in my own way. (...) That's, that's, that's the greatest 13

value in life”(i_10). Participants consider it also as their own responsibility: “I just want to keep 14

it under control. (...) And frankly, I think you shouldn’t burden someone else. It’s my decision, so 15

I'm fully responsible”(i_16). 16

However, this independent way of life also seemed to make them feel lonely in the preparation 17

of this ultimate decision. One man, who strongly perceived himself as an independent, 18

autonomous person with full personal responsibility for everything he did, put it this way: “You 19

know, it might sound tough, but it also means that you feel completely thrown back on yourself. 20

You just stand alone”(i_4). And a woman - who supported her husband to hasten his death by 21

voluntary stopping eating and drinking a year before the interview took place - showed one of 22

Page 19 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



20

her favourite postcards depicting a painting of someone lying on a rug, tenderly flown away by 1

swans. She told: 2

Sadly, it’s impossible for me, to sail away like this. I'll have to do it all by myself. (...) We 3

could support my partner with making choices and with help. But I.., I'll just have to do it 4

all by my self, at least for a large part... For I don’t want to bring my kids in trouble 5

anyway. Nor the doctor.(i_5) 6

Despite most participants clearly stated that they regarded their choice to end life as their “own 7

responsibility” and “an autonomous, independent decision” preferably made without any 8

interference from others, at the same time, the majority of participants did paradoxically want 9

interference with proper (medical) assistance to actually carry out the act to end life and they felt 10

closely dependent on medical professionals for support and assistance. A lady almost cried: 11

If anyone has a deep reverence for life, it's me! ... What the hell! Sure! Really! I mean, 12

because I want it in a neat way! I want someone… I want someone to help me. I want 13

someone to make it easy for me to, so to say, give my soul in the hands of the Lord.(i_1) 14

Some years earlier, she had attempted suicide with an overdose of morphine, however, she 15

survived. Now, she desperately search for a doctor prepared to assist her, but her medical 16

condition did not allow medical assistance within context of the Dutch Euthanasia law. 17

5) Legitimacy and illegitimacy 18

Participants’ accounts are full of imaginations of what good death could be, namely: a self-19

chosen, self-directed, well-organized, dignified and legal death, preferably at home surrounded 20

by meaningful others, and with some medical assistance to ensure a smooth and successful 21

attempt without the probability of mutilation. In most accounts, there was tension between the 22

Page 20 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



21

longing for legitimacy with regard to their death wish as something “quite normal”, 1

“understandable” and “justified” versus the experience of being judged as doing something 2

“illegitimate”, “illegal” and being part of “an underground movement”. This tension appears at 3

the interpersonal and societal level. 4

On the interpersonal level, participants long for understanding and acceptance of their ideas and 5

plans. All participants highly valued open awareness and a certain transparency with regard to 6

their death wish: open communication – “in all sincerity” – about their intention to terminate 7

their own life with meaningful others was appreciated. They preferred an “honest” decease: “not 8

just secretly slip away on your own”, but saying “carefully and lovingly” farewell to others. In 9

daily life, however, the majority of participants experienced that talking about their intention to 10

terminate their own life, was still a social taboo and was often encountered with disregard, denial 11

and misunderstanding. One man said: “My son did simply not respond, not in words nor in 12

gesture”. A woman, who was met with defensive or angry reactions, told: 13

Very consciously, I told my children and my friends. (…) And then I got them all over me. 14

And that's not easy, that’s just not easy. I just don’t know how to deal with it. (...) It 15

sledgehammered them. (…) In their eyes, death is something terrible and suicide is 16

almost like a sin. They [her children] are not raised religiously, but still it goes against 17

their lust for life.(i_12) 18

Not only close family rejected the idea of a self-chosen death, but also other elderly people like 19

neighbours or occupants of the same nursing home were “getting mad” at them: “I cannot talk 20

about it with people. They say: “Are you crazy!” (…) I’d better keep it for myself”(i_19). 21

Page 21 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



22

On the societal level, they felt “let down” and “abandoned” by society and the government, and 1

felt “inhibited” in their freedom of choice. The majority of participants were of the opinion that 2

they had “the right for a properly assisted death” by a doctor. They plead for a more liberal 3

interpretation of the Euthanasia Act and claimed to have a right to ask a physician to perform 4

euthanasia or prescribe lethal medication, even if their only adverse condition is old age and the 5

danger that they might lose control of their mind and body. One man told: 6

“Some potentates in The Hague [city of government] are forbidding you to take your own 7

life [in a dignified way]. You are deprived of your freedom. They made it really 8

impossible, at least in a legal way, in an open manner”(i_4). 9

Others mainly attributed it to “the dictatorship of the church” or “the unwillingness of 10

physicians”. They felt forced to organize death in an ‘illegal’ way, for example because they 11

had to tell lies to their general practitioner, because otherwise he would not deliver them the 12

required medication, or because they were afraid of the possibility of prosecution of people who 13

supported them with ordering medication over the internet. Two women though, rejected the idea 14

of claiming the right for dying assistance because their lack of a serious medical condition, and 15

oppositely underlined the “irresponsibility to burden a physician with the act to terminate the 16

life of someone like me” [i.e. a person who is not suffering from a unbearable or terminal illness] 17

and the fact that self-determination inherently means that one is also self fully responsible for the 18

final act. 19

To underline the natural, understandable and legitimate character of the self-chosen death in 20

elderly people, some made analogies with animal behavioural patterns: “To me, it mirrors a 21

habit in the animal world (...) It’s often seen that animals who feel they have reached end-of-life, 22

Page 22 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



23

withdraw themselves and just wait until they die. So why can’t we?”(i_10) Others drew an 1

analogy between their death wish and ancient cultural habits: 2

In former times, we also put grandma on an Artic ice floe with a bottle of gin. (...) If 3

grandma was no longer useful to the clan, they said: ‘Well grandma, it is enough. We run 4

out of food thus the children are preferred. (...) Why would it be different now? Yeah I 5

mean it. (...) There is scarcity too now [in energy and health care capacity].(i_5) 6

All participants were member or contributor of at least one Dutch right-to-die organization, 7

hoping that these organizations would “represent their interests” and force a political 8

breakthrough, namely the legalization of assisted self-chosen death in the elderly and the 9

availability of a so-called ‘Drion pill’ [i.e. an opted end-of-life pill that would enable elderly 10

people to end their own life if they wished to do so]. This pill was often mentioned by 11

participants as “the most comfortable solution to their problem” imaginable which would 12

“surely made them feel at ease”. As one respondent put it: “It would be a terrible relief to have 13

that pill on my nightstand”.(i_6) 14

Discussion 15

The results of this study reveal that living in-between intending and actually performing a self-16

directed death, is characterized as living in a paradoxical position. Participants’ accounts are 17

permeated with ambivalences and ambiguities. They felt both detached and attached; they felt 18

both ready to give up on life and they tended to postpone hastening death; they both had a sense 19

that their wish to die was entirely on their own volition and they sensed an inner and much more 20

uncontrolled compulsion; they both tried to ensure themselves about manners to organize a 21

‘good death’ and they were threatened by uncertainties and worries as they realized the 22

Page 23 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



24

impossibility to fully control death. Both sides coexist and are inextricably intertwined. 1

Obviously, balances differ and shift from account to account, but a paradox is present in every 2

included story, indicating that living in-between intending and actually performing a self-chosen 3

death is an existential challenge, characterized by the complementarity between volition and 4

compulsion as an inherent feature of this decision-making process. 5

Previous research has presented causal and risk factors associated with the wish to die, suicidal 6

ideation and suicidal behaviour in elderly people 23-25

. However, there is very little empirical 7

research on the question of how people experience the period between intending and performing 8

a self-chosen death. This study contributes to literature by presenting the first ‘real-life’ account 9

of what it means to live in this in-between period, ideating on a self-chosen death. Participants 10

perceived a self-chosen death to be a blessing, a benefit, an improvement of their lot, because it 11

will avoid them from (further) harm, rather than causing it. For most, human suffering had no 12

positive moral significance, so why maintaining life at all costs? To some extent, the self-chosen 13

death even appeared to be the consequence of participants’ commitment to personal, moral or 14

aesthetic values, as for most participants, self-development, self-determination, and 15

independence were paramount. The termination of one’s life could be seen as a clear refusal 16

and/or incapacity to compromise with and adapt to life-as-it-is. 17

Our results questions both the conception of ‘rational suicide’ as an autonomous, free decision 18

without pressure and the conception of an ‘irrational, pathologically driven suicide’. The self-19

chosen death in elderly people appears neither to be decisively irrational and pathological, nor 20

rational. On the one hand, participants’ were of the opinion that they made a ‘reasonable’ 21

assessment of their situation. They did perceive that they were better off dead. They were 22

assumed to have the ability to sound-decision making, as there was no evidence of severe 23

Page 24 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



25

psychological disturbance. And generally, their considerations were in consonance with their 1

fundamental interests and values. These characteristics show great similarity to the 2

characteristics mentioned in the literature on rational suicide 7-10

. 3

On the other hand though, participants also talked about being forced by inner bodily and 4

emotional compulsions and attachments. The self-directed death emerges as an ultimate escape 5

to safeguard oneself and a way to exert control. The elderly involved - often strong-willed, 6

autonomous and rationally oriented persons, highly valuating an independent and self-7

determined life - failed to live according to their values and ideals. They felt threatened in their 8

abilities, their performance and their identity, no longer able to live a perceived worthwhile life. 9

Therefore, they preferred death over life, as they consider death to be the end of sorrow, pain and 10

stress. These findings support the idea of Kerkhof and De Leo 13 that “rationality may be a very 11

misleading concept for a proper explanation of suicidal behaviour” and that true reasons – such 12

as anxiety, fears or threats of losing core aspects of one’s identity – should not be obscured. 13

Practical implications 14

When faced with mentally competent elderly people who sincerely believe that their life is 15

completed and no longer worth living, mental health professionals are highly challenged 26: How 16

to respond in an appropriate way? Our findings show that the in-between period emerges as a 17

considerable, existential challenge, with rational and non-rational concerns and thoughts, rather 18

than a calculative, coherent sum of rational considerations. At least for this sample, the 19

conception of ‘rational suicide’ as an autonomous, free decision without pressure is seriously 20

questioned. Rationality might contribute to the decision to terminate one’s life, however, these 21

data indicate that these people should not be merely approached as independent, autonomous and 22

self-determining agents, but rather acknowledged as human beings struggling with life in all its 23

Page 25 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



26

ambiguity. This has essential implications for health-care. To provide good care, it is of crucial 1

importance to make a clear distinction between pathological suicide and a self-chosen death in 2

older people. To treat this existential struggle as a pathological suicide might increase the level 3

of distrust between these elderly people and health-care professionals. Therefore, conscious 4

awareness of this phenomenon and careful, unbiased discernment are important prerequisites for 5

better support and less existential loneliness among this particular group of elderly. On the 6

contrary, it also appears highly relevant to realize the possible disastrous impact of empowering 7

people in their ‘rational, cognitive’ suicide wish 10 27 28

, as this study found that it probably might 8

not be a strictly rational consideration. 9

Policy implications 10

Most participants were in favour for a more liberal interpretation of the Euthanasia Act and 11

claimed to have a right for assisted dying, despite if they did not suffer unbearably from a 12

classified medical condition. Our study can inform policy makers in the sense that it gives in-13

depth insight in what it means to live with an age-related wish to die, and to become more 14

sensitized to the threats they experience. It also highlights the need of due consideration of all 15

nuances and ambiguities relating a rational and well-considered wish to die which need to be 16

taken into consideration in order to develop conscious and careful policy for this particular group 17

of elderly. 18

Reflections on strengths and limitations 19

We took several steps to enhance validity and reliability: we worked in a research team of three 20

researchers. While the first author performed the data-collection, all were involved in the 21

analysis. We undertook member checks of the data collected, not only for ethical reasons but 22

also verify whether the participants feel that the narrative report reflects what they actually 23

Page 26 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



27

intended to say. Despite some minor factual remarks, participants confirmed that the narrative 1

reports fully reflected their stories. By giving an in-depth methodological description we attempt 2

to provide transparency and allow integrity of results to be scrutinized. To reduce the effects of 3

biases, beliefs and assumptions as much as possible, a reflective commentary was used and 4

frequent debriefing sessions between all researchers’ were organised during data gathering and 5

data-analysis. 6

However, it should be noted that all participants were Dutch citizens living in the Dutch context 7

where euthanasia has been legalized and an open and progressive public debate is going on 8

“elderly and the self-chosen death”. Although cultural and societal differences might limit a one-9

to-one transferability of these results to other countries, the Dutch situation certainly can inform 10

the debate on legalization of assisted dying in other Western countries. For the Netherlands, our 11

findings are considered to be generalizable to other similar populations, as we maximized 12

variation in our sample. By providing thick description of the phenomenon, we tried to allow 13

readers to have proper understanding and enable them to compare the descriptions with those 14

that they have seen emerge in other situations. Nevertheless, more research to this topic is 15

recommended to compare empirical findings in different countries and cultures. 16

17

18

Page 27 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



28

Contributorship statement: All authors were responsible for the research design. EvW 1

obtained funding, took lead responsibility for ethical aspects of the research, undertook all 2

interviews, undertook and/or checked all transcripts along with a transcriber, led the data 3

analysis, and wrote the manuscript with input from all co-authors and is guarantor. CL and AG 4

read all transcripts.The analysis took place gradually in discussions between the three authors. 5

CL and AG both contributed to the writing and revision of the manuscript. 6

No competing interests: We have read and understood BMJ policy on declaration of interests 7

and declare that we have no competing interests. 8

Funding: This work was supported by the Netherlands Organisation for Scientific Research 9

(NWO). Grant number: 023.001.035 10

Data sharing statement: No additional data are available. 11

Page 28 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



29

References 1

1. van Rein PS. Petitioning for completed life: A thematic content analysis. Walden University, 2

2013. 3

2. Tallis R. Should the law on assisted dying be changed? Yes. BMJ 2011;342. 4

3. Fitzpatrick K. Should the law on assisted dying be changed? No. BMJ 2011;342. 5

4. Buiting HM, Deeg DJH, Knol DL, et al. Older peoples' attitudes towards euthanasia and an 6

end-of-life pill in The Netherlands: 2001–2009. Journal of Medical Ethics 2012. 7

5. Raijmakers NJH, van der Heide A, Kouwenhoven PSC, et al. Assistance in dying for older 8

people without a serious medical condition who have a wish to die: A national cross-9

sectional survey. Journal of Medical Ethics 2013. 10

6. van der Heide A, Onwuteaka-Philipsen B, van Thiel GJMW, et al. Kennissynthese Ouderen en 11

het zelfgekozen levenseinde [Research synthesis Elderly and the self-chosen death]: Den 12

Haag: ZonMw, 2014. 13

7. Battin MP. Can suicide be rational? Yes, sometimes. In: Werth JL, ed. Contemporary 14

perspectives on rational suicide, 1999:13-21. 15

8. Lester D. Can suicide be a good death? Death Stud 2006;30(6):511-27. 16

9. Hewitt J. Why are people with mental illness excluded from the rational suicide debate? 17

International Journal of Law and Psychiatry 2013;36(5–6):358-65. 18

10. Werth Jr JL. Rational suicide. Implications for mental health professionals. Washington: 19

Taylor & Francis, 1996. 20

11. Moore SL. Rational suicide among older adults: a cause for concern? Archives of psychiatric 21

nursing 1993;7(2):106-10. 22

Page 29 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



30

12. Moody HR. ''Rational suicide'' on grounds of old age? Journal of Geriatric Psychiatry 1

1991;24(2):261-76. 2

13. Kerkhof AJ, De Leo D. Suicide in the elderly: A frightful awareness. Crisis: The Journal of 3

Crisis Intervention and Suicide Prevention 1991. 4

14. Richman J. A Rational Approach to Rational Suicide. Suicide and Life-Threatening Behavior 5

1992;22(1):130-41. 6

15. Yuill KL. Assisted suicide: The liberal, humanist case against legalization. Bastingstoke: 7

Palgrave Macmillan, 2015. 8

16. van Wijngaarden EJ, Leget CJW, Goossensen A. Ready to give up on life: The lived 9

experience of elderly who feel life is accomplished and no longer worth living. Social 10

Science & Medicine 2015. 11

17. van Wijngaarden EJ, Leget CJW, Goossensen A. Till death do us part: The lived experience 12

of an elderly couple who chose to end their lives by spousal self-euthanasia. The 13

Gerontologist 2015. 14

18. Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatrica 15

Scandinavica 1983;67(6):361-70. 16

19. Finlay L. Phenomenology for therapists: Researching the lived world. West Sussex: Wiley-17

Blackwell, 2011. 18

20. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative research in 19

psychology 2006;3(2):77-101. 20

21. Patton MQ. Qualitative research and evaluation methods. Thousand Oaks, Calif.: Sage 21

Publications, 2002. 22

Page 30 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



31

22. van Manen M. Phenomenology of practice: Meaning-giving methods in phenomenological 1

research and writing. Walnut Creek, California: Left Coast Press, 2014. 2

23. Rurup ML, Pasman HR, Goedhart J, et al. Understanding why older people develop a wish to 3

die: A qualitative interview study. Crisis: Journal of Crisis Intervention & Suicide 4

2011;32(4):204-16. 5

24. Rodda J, Walker Z, Carter J. Depression in older adults. BMJ 2011;343:d5219. 6

25. O'Connell H, Chin A-V, Cunningham C, et al. Recent developments: suicide in older people. 7

BMJ 2004;329(7471):895. 8

26. McCue RE, Balasubramaniam M, Kolva E, et al. Rational suicide in the elderly: Mental 9

illness or choice? The American Journal of Geriatric Psychiatry 2015;23(3):S41-S42. 10

27. Lester D. Rational suicide: is it possible? Reflections on the suicide of Martin Manley. New 11

York: Nova Science Publishers, 2014. 12

28. Battin MP. Rational suicide: how can we respond to a request for help? Crisis: The Journal of 13


15

Page 31 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



1

Appendix 1 - The interview guide Researching the lived experience of elderly people who feel life is completed and no longer worth living

Introduction of the interview

- Acknowledgments for time and participation

- Information about the research project and the procedure

- Information about the character of the in-depth interview (open structure and the

focus on the thorough exploration of the lived experience)

- Possibility for questions about the project and the interview

The interview

Introductory question

- Can you tell me in what way our call to participate in this study did appeal to you?

Sequence 1: About completed life

- Can you describe what it means to experience that life is completed1?

- Can you focus on a particular example of this experience? Can you describe a

specific event or particular experience when you (first) experienced that life is

completed?

- Can you describe as fully as possible how this experience influences your daily

life?”

Sequence 2: About the wish to die

- Can you describe what it means to have a strong desire to die?

- Can you describe as fully as possible how the wish to die influences your daily

life?

- Can you describe a moment when the desire for death was very strong?

- Can you describe a moment when it was less pronounced, more at the

background?

- What kind of things influence your wish to die?

Sequence 3: About a self-directed death (if suitable)

- Tell me about your preference of a self-directed death. Can you explain why it is

important to you?

- Tell me about the process of how your decisions / ideas developed.

- What is to like to live in this in-between period: living on while ideating on a self-

directed death?

1 NOTE: if a participant used another word, such as ‘life is over, ready to give up on life, tired of life, the interviewer used this

way of saying in her questions to stay as close as possible to the participant’s experience.

Page 32 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



2

Elaborating questions

In order to encourage participants to articulate their experiences in detail, during the

interview, the interviewer keeps on posing questions such as:

- Can you describe the experience as much as possible as you live(d) through it?

- Please, try to describe the experience from an insider-perspective, as it were

almost like a state of mind. Tell me about the feelings, the mood, the emotions.

- Can you elaborate a bit more on that as concretely as possible?

- What do you mean by…?

- What is it like…?

- In what way?

After the interview

- Closing words and summarization

- Voluntary administration of the HADS

- Ask for the completed personal information form

- Acknowledgments

- Appointments about member check and privacy

- Appointments about reciprocal possibility to contact for any additional info

- Appointments about possibility aftercare

-

Page 33 of 33


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



Caught between intending and doing: older people ideating on a self-chosen death

Journal: BMJ Open

Manuscript ID bmjopen-2015-009895.R1

Article Type: Research

Date Submitted by the Author: 07-Dec-2015

Complete List of Authors: van Wijngaarden, Els; University of Humanistic Studies, Care and Well-being Leget, Carlo; University of Humanistic Studies, Care and Well-being Goossensen, Anne; University of Humanistic Studies, Care and Well-being

<b>Primary Subject Heading</b>:

Qualitative research

Secondary Subject Heading: Ethics, Mental health, Health policy

Keywords:

MENTAL HEALTH, QUALITATIVE RESEARCH, ETHICS (see Medical Ethics),

MEDICAL ETHICS, Suicide & self-harm < PSYCHIATRY, Old age psychiatry < PSYCHIATRY


BMJ Open on June 22, 2020 by guest. P

rotected by copyright.http://bm

jopen.bmj.com

/B

MJ O

pen: first published as 10.1136/bmjopen-2015-009895 on 18 January 2016. D

ownloaded from



1

Caught between intending and doing: older people ideating on a self-chosen 1

death 2

Author names 3

1. Els van Wijngaarden MA (corresponding author) 4

University of Humanistic Studies, 5

Kromme Nieuwegracht 29, 6

3512 HD Utrecht, The Netherlands 7


Tel: +31 6 83 24 84 33 9

Fax: not available 10

11

2. Prof. dr. Carlo Leget 12



15

3. Prof. dr. Anne Goossensen 16



19

Keywords: Older people; suicidal ideation; rational suicide; end-of-life; assisted dying; 20

qualitative study 21

Word count main manuscript: 7675 (excl. Table and References). 22

Page 1 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



2

Abstract 1

Objectives: The aim of this paper is to provide insight into what it means to live with the 2

intention to end life at a self-chosen moment from an insider perspective. 3

Setting: Participants lived independent or semi-dependent throughout The Netherlands. 4

Participants: 25 Dutch older citizens (mean age of 82 years) participated. They were ideating on 5

a self-chosen death because they considered their lives to be no longer worth living. Inclusion 6

criteria were that they: 1) considered their lives to be ‘completed’; 2) suffered from the prospect 7

of living on; 3) currently wished to die; 4) were 70 years of age or older; 5) were not terminally 8

ill; 6) considered themselves to be mentally competent; 7) considered their death wish reasonable. 9

Design: In this qualitative study, in-depth interviews were carried out in participants’ everyday 10

home environment (median lasting 1.56 hours). Verbatim transcripts were analysed based on the 11

principles of phenomenological thematic analysis. 12

Results: The liminality or ‘in-betweenness’ of intending and actually performing self-directed 13

death (or not) is characterized as a constant feeling of being torn explicated in the following 14

themes: 1) detachment and attachment; 2) rational and non-rational considerations; 3) taking 15

control and lingering uncertainty; 4) resisting interference and longing for support; 5) legitimacy 16

and illegitimacy. 17

Conclusions: Our findings show that the in-between period emerges as a considerable, 18

existential challenge with both rational and non-rational concerns and thoughts, rather than a 19

calculative, coherent sum of rational considerations. Our study highlights the need of due 20

Page 2 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



3

consideration of all ambiguities and ambivalences present after a putatively rational decision has 1

been made in order to develop careful policy and support for this particular group of older people. 2

Page 3 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



4

Strengths and limitations of this study 1

• This study gives voice to older people who wish to die – preferably with medical assistance – 2

while they do not suffer from a life-threatening disease or a psychiatric disorder. 3

• This study is the first to elucidate what it means to live in-between intending and actually 4

performing a self-chosen death (or not). 5

• This study introduces empirical evidence into the largely theoretical debate on rational 6

suicide. 7

• Our study highlights the need for due consideration of all ambiguities and ambivalences 8

present after a putatively rational decision has been made, in order to develop careful policy 9

and support for this particular group of older people. 10

• Although transferability to other countries is limited due to cultural differences, the Dutch 11

discussion may inform the debate on (legalization of) assisted dying in other Western 12

countries. 13

Page 4 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



5

Introduction 1

It is not a question of dying earlier or later, but of dying well or ill. 2

And dying well means escape from the danger of living ill. 3

(Seneca) 4

The past decades have seen a rapid increase of life expectancy and longevity. Despite all the 5

advances in healthcare and medical technology, old age is quite often accompanied by loneliness, 6

age-related problems and disabilities. These problems have an influence on the perceived 7

physical and mental health in older people, threatening their capacity to maintain meaning and 8

purpose (Seale, 1996). This raises the question whether a longer life is associated with more 9

years of life quality, or whether it is associated with increased feelings of dependence and 10

prolonged disability. Indeed, it has been suggested in the Dutch debate on older people and a 11

self-chosen death that medical science has made it possible to sustain human existence past the 12

point where a competent adult might rationally conclude that life is no longer worth living.1. 13

In the Netherlands, one of the few countries in the world that have legalized euthanasia and 14

assisted dying under strict criteria, there is considerable debate whether older people aged 70+ 15

who consider their lives to be completed, should have legal options to ask for assisted dying 2 3. 16

In 2010, the Right-to-Die-NL started a campaign ‘Out of Free Will’ and placed this discussion 17

on social and political agendas. Based on a ‘rational and well-considered choice’ older people 18

should have legal options for assistance with the termination of their life, they argue. Under 19

current Dutch legislation, however, most of the concerned older people do not have a legal right 20

to euthanasia, as they do not meet the criteria specified in the Dutch Termination of Life on 21

Request and Assisted Suicide Act: the conviction that the quality of life has diminished so much 22

that older people prefer death over life does not constitute legal grounds for assisted dying, as 23

Page 5 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



6

they do not suffer unbearably without the prospect of improvement from a medical perspective 4. 1

Thus the Right-to-Die-NL advocates the further relaxation of the euthanasia criteria for the 2

benefit of this group and aims to make ‘self-determination of life’s end a reality’ 1. 3

The argument that older people should have the right to assisted dying based on a ‘rational and 4

well-considered choice’ presupposes that ending one’s life can be considered a rational and 5

autonomous choice, even if one is not terminally ill. In the literature this is termed ‘rational 6

suicide’ (also referred to as ‘a self-chosen death’, ‘balance-sheet suicide’, ‘self-euthanasia’, ‘self-7

deliverance’ or ‘surcease’). There has been considerable debate between those in favour of 8

‘rational suicide’ 5-8 and those opposing it

9-13. While both sides in the debate argue their case 9

based on ‘the good of humanity’, there are significant differences. 10

Authors who judge ‘rational suicide’ in old age as an honourable and sane choice underline 1) 11

the individual’s moral right to self-determination; 2) the logical, understandable outcome of the 12

balance sheet: as one ages, the negative points accumulate to such an extent that death becomes 13

preferable to life; 3) the evil of needless suffering; and 4) the possibility of satisfaction and 14

empowerment if one exerts control over one’s death. According to the proponents, criteria for 15

assessing suicide as ‘rational suicide’ are that people have an unremitting hopeless condition; 16

make a realistic assessment of their situation; are able to make a free, autonomous choice; are 17

capable of sound reasoning (which implies the absence of severe psychological illness or 18

emotional distress influencing the decision); have adequately considered possible alternatives; 19

and act in consonance with their fundamental values. 20

Authors opposing ‘rational suicide’ in old age mainly use the following arguments: 1) the 21

psychological argument; 2) the ageism argument; and 3) the slippery slope argument. Primarily, 22

Page 6 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



7

some authors fundamentally question whether deliberately ending one’s life can or should ever 1

be seen as a rational decision: is it possible to distinguish ‘rational suicide’ from ‘pathological 2

suicide’ or should suicide be considered prima facie evidence of mental instability? Next, the 3

ageism argument argues that supporters of ‘rational suicide’ base their arguments on an ‘ageist 4

bias’, which means that old age is wrongly associated with being a burden (on the personal, 5

relational, societal and economic level), with unvalued status and great inconvenience. Death is 6

offered as a solution for the problem of age-related suffering “that is perceived as insoluble” 12, 7

while improving the conditions of those older people might lessen the wish to die. And lastly, by 8

using the slippery slope argument, several authors point out the risk of the deteriorating respect 9

for the value of human life and ageing, and the risk of societal values shifting from recognition 10

of an individual’s right-to-die to a climate enforcing a societal obligatory duty to die 9. 11

Many studies on the topic of ‘rational suicide’ in old age focus on theoretical, ethical and legal 12

argumentation. In fact, we found no empirical studies that explore the experiences and struggles 13

of people ideating on a self-chosen death from an insider perspective. In order to develop 14

conscious policy and good care for this group of older people, however, it is essential to 15

understand how these older people experience their lives: what it means to live with the intention 16

to end life at a self-chosen moment; how they make sense of their experiences; and to what 17

extent their wish can be considered truly rational? This particular paper therefore aims to provide 18

insight into what it means to live with the intention to end life at a self-chosen moment from an 19

insider perspective. 20

21

22

Page 7 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



8

Methods 1

Sampling 2

This study is a qualitative in-depth interview study of twenty-five older people ideating on 3

manners to end life at a self-chosen moment. It is part of a more extensive research project that 4

aims to elucidate the experiences of older people who wish to die because they consider their 5

lives to be completed and no longer worth living 14 15

. Between April and September 2013, 6

research advertisements were placed in various magazines targeting distinct audiences of older 7

people. Older people who wished to die because they felt their life was completed were invited 8

to participate in an in-depth interview. The inclusion criteria were that participants: 1) considered 9

their life ‘completed’; 2) suffered from the prospect of living on; 3) currently wished to die; 4) 10

were 70 years of age or older; 5) were not terminally ill; 6) considered themselves to be mentally 11

competent; 7) considered their death wish reasonable. 12

One hundred forty-four people responded by post, email and telephone. Participants were 13

purposefully sampled in two sequences: the first selection was based on respondents' initial 14

description of their personal situation. Sample criteria were: a variety of cases; differences in 15

(physical) health; various ideological and demographic backgrounds; and nationwide coverage. 16

The interviewer then contacted potential participants. Upon closer inspection, some potential 17

participants were excluded. They proved to be what we called "if-then respondents”: if their 18

situation would continue to decline, then they could imagine themselves favouring an assisted 19

self-chosen death. Hence, at the moment of contact they had no active wish to die. Besides, some 20

respondents were driven by strong motivations to advocate legalization of self-directed death, 21

instead of giving an experiential account of their situation. In some cases, respondents withdrew 22

Page 8 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



9

from participating. One participant who was 67 years old, was included because of her unique 1

ideological background. All participants were provided with detailed written information about 2

aim and procedure of the study, the right to withdraw at any time and the possibility of aftercare 3

if needed. All participants signed a consent form and were assured that their name and identity 4

would not be disclosed. Table 1 – which has already been published before14 – gives an overview 5

of all background characteristics of the selected participants. 6

Table 1_Characteristics of the selected participants (n=25)

Gender Participants (n)

Male 11

Female 14

Age (average 82 years) Participants (n)

up to 80 12

80-90 8

90-99 5

Partner status Participants (n)

Partner (living together) 5

Partner (living in a nursing home) 1

LAT relationship (living apart together) 1

Widowed 14

Divorced 2

No partner 2

Children Participants (n)

Children 14

Children (but no contact at all) 2

Children (deceased) 2

Childlessness (both involuntary or by choice) 7

Living situation Participants (n)

Independent 19

Semi-dependent 4

Care home 2

Belief Participants (n)

Humanism 4

Christianity 6

Anthroposophy / Esoterism 3

Agnosticism 2

No belief 10

Most important former occupation Participants (n)

Supervisor, manager, director, entrepreneur 6

Psychotherapist / nurse / social worker 5

Technician, chemist 2

Politician 1

Teacher / lecturer 4

Accountant / secretary 2

Interior designer 1

Housewife / pastor’s wife 2

Several “unsuccessful” jobs 2

Relevant health problems mentioned by participants Participants (n)

No serious illness 10

Sensory disorders: anosmia, hyperacusis, tinnitus, deafness, macular degeneration 7

Craniomandibular dysfunction, facial pain 2

Arthritis, rheumatism, fibromyalgia, hip replacement, rib and spinal injuries, osteoporosis 6

Chronic fatigue 3

Page 9 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



10

Diabetes 3

Intestinal disease 1

Valvular heart diseases: cardiac failure, transient ischemic attacks (TIAs), valve repair 6

Serious itchiness 2

Outcome of screening for depression (HADS-scale) Participants (n)

1-7 (no indication) 15

8-10 (mild) 6

11-15 (moderate) 2

16 or above (severe) 1

Outcome of screening for anxiety (HADS-scale) Participants (n)

1-7 (no indication) 21

8-10 (mild) 3

11-15 (moderate) 0

16 or above (severe) 0

Membership of a right-to-die organisation Participants (n)

Yes 23

No 1

Unknown 1

1

Data collection 2

The interviews took place from April to December 2013 in participants’ own home and lasted 3

two hours on average. A phenomenological approach to interviewing was used to explore the 4

lived experiences of older people who feel ‘life is completed and no longer worth living’ and 5

wish to die at a self-chosen moment. The interviews had an open structure. Guiding questions 6

were: “Can you describe what it means to have a strong desire to die?”; “In what kind of 7

situations is your wish to die strong? “Can you describe that situation as fully as possible?” 8

The interviewer tried to empathically engage with the participants and encourage them to narrate 9

their experiences in detail (See for the complete interview guide Appendix 1). The interviews 10

were audiotaped and transcribed verbatim. During and immediately after the visits, observational 11

notes were made about contextual characteristics, the atmosphere and relevant non-verbal 12

expressions. Participants were asked to fill in a personal background information form. Next, 13

participants were asked to complete the Hospital Anxiety and Depression Scale (HADS) 16. This 14

was done to obtain a preliminary indication as to whether the wish to die was driven by a severe 15

depression or not, as depression is the most frequently studied factor in relation to death wishes 16

in older people. The HADS was administered by the interviewer immediately after the interview 17

Page 10 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



11

to avoid influencing the characteristic openness of a phenomenological interview. In Table 1, the 1

outcomes of screening are included as participant characteristics. 2

In the year after the interviews, the interviewer received eight notices of older people who did 3

engage in life-ending behaviour and died a self-chosen death. These death notices were sent at 4

participants’ own initiative. 5

Statement of ethical approval 6

The Medical Ethical Review Committee UMC Utrecht evaluated this study. This committee 7

confirmed that the Dutch Medical Research Involving Human Subject Act (WMO) did not apply, 8

as participants were not patients but mentally competent citizens, and participants were not 9

subjected to treatment or required to follow a certain behavioural strategy as referred to in the 10

WMO (art.1b). Subsequently, official approval of this study was not required (protocol: 13-11

176/C). 12

Data analysis 13

The first analysis of all 25 interviews contributed to an earlier study which resulted in a 14

phenomenological characterization of the phenomenon ‘life is completed and no longer worth 15

living’ 14. For the purpose of this study all interviews were re-analysed, now focusing on the 16

research question of what it means to live with the intention to end life at a self-chosen moment. 17

A phenomenological thematic analysis 17-19

was used. The analysis followed a semantic, 18

inductive approach 18, which means that identified themes are strongly experientially driven and 19

grounded in the data themselves rather than theory driven. The analysis consisted of different 20

phases (as described below) in a recursive process, characterized by a constant forward-21

Page 11 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



12

backward movement between the entire dataset, the coded extracts, and the descriptive analysis 1

in progress. Atlas.ti 7.5 was used as a tool to compare themes and meaningful fragments. 2

First, the researchers tried to familiarize themselves with the data by repeated and active reading 3

of the whole data set. Interpretation was discussed within the team. Afterwards, a narrative report 4

was written of each interview and sent to the participants for a member check. Next, an inductive, 5

bottom-up search was undertaken for themes related to the research question. Text elements were 6

coded. Then codes were combined and summarized in main themes and subthemes. In the next 7

phase, the themes were reviewed in search for a coherent and valid pattern: the themes should 8

form an accurate representation of all meanings evident in the data set. Categories were judged 9

by two criteria: internal homogeneity (i.e. the extent to which the data are internally consistent) 10

and external heterogeneity (i.e. the extent to which the differences among the themes are bold 11

and clear) 18. When needed, a theme was refined and nuanced. Writing was not something that 12

took place at the end, but an integral part of analysis, as the writing process itself deepened our 13

understanding, clarified meanings and highlighted layers and polarities in the data 18 20

. Findings 14

were mutually discussed between all authors and revealed a high consensus. Some minor 15

discrepancies led to a more precise definition of the themes. Inter-subjective reliability was 16

sought throughout the analysis process. 17

18

Results 19

In this section we describe the themes found within the data. For all included older people, the 20

in-between period between the firm intention to end life at a self-chosen moment on the one hand 21

and the whether-or-not decision to actually terminate life on the other hand is characterized as a 22

Page 12 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



13

constant feeling of being torn, expressed in words like: “dilemma”, “tension”, “doubt”, 1

“struggle”, “a difficult balancing act”, “a quandary”, “a splits position”, “an unsolvable 2

problem”, “in two minds” and “a contradictory process”. Below, this paradoxical position is 3

explicated in the following polarities: 1) detachment and attachment; 2) rational and non-rational 4

considerations; 3) taking control and lingering uncertainty; 4) resisting interference and longing 5

for support; 5) legitimacy and illegitimacy. 6

1) Detachment and attachment 7

All participants felt ready to give up on life based on a strong sense of detachment: they felt 8

disconnected from their actual life and they lived with constant anxiety for the future and further 9

deterioration. While maintaining control over their own life was a considerable concern among 10

participants, in contrast, they sensed an inevitable loss of grip. This declining physical capacity 11

threatened their independence and dignity. The interviews portray participants as deeply 12

concerned to find a way that spares them further suffering: “I just want to keep myself safe, you 13

know”(i_20). For most, a self-chosen death seemed to be the most preferred option, to flee from 14

life as-it-is or as-it-comes: “It’s a duality. That’s why I prefer to flee. And dying is the best 15

method, as far as I’m concerned. I'm not afraid to die. I've never been afraid to die”(i_10). One 16

participant talked about her yearning to die: “Sooner rather than later! You know, I told my 17

friend: keep in mind, when I am dead, you fly the flag!”(i_17) Death was often associated with 18

the end of suffering, a release of distress and humiliation, a state of rest and peace, an endless 19

sleep, and in some cases reunification with beloved ones. 20

Simultaneously however, the tendency to postpone death - due to certain attachments to life - 21

was also explicitly common in participants’ stories. They mentioned several attachments such as 22

physical vitality, responsibilities and duties towards themselves and others, and religious 23

Page 13 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



14

conscientious objections. Several participants told that they still sensed a physical drive to live 1

on, regardless of their wish to die. They still enjoyed good food and drinks and wanted to feel 2

comfortable in their body. One participant said: 3

I feel like I’m holding a splits position. On the one hand, I definitely want to die. On the 4

other hand though, there is still simply too much physical, intuitive life force. (...) So you 5

just live on, you breathe, you eat and uh, take care of yourself. I mean, if you are really 6

done, you would stop eating, wouldn’t you? (…) But that physical body of mine tells me: 7

“I’m hungry for a sandwich.” So, I have a sandwich. (…) That's the dilemma I’m living 8

in: you rationally want to die, but at the same time, there’s that unbreakable will to live, 9

which makes me feel I’m being pulled in two directions (i_4) 10

Experiencing paradoxical physical attachment was not only about satisfying a healthy appetite. 11

Several participants spoke about exercising once a day to keep fit and vital. One woman 12

seriously considered a hip replacement operation to increase her mobility and independence, 13

while also making plans to terminate her life. Another woman who desperately wished to die 14

talked about her “inconsistent” efforts to strengthen her physical health: 15

All the time, I’m thinking: How to die? The only hope I have is that I am run over by a 16

car. Or when I hear about an airplane accident, I think: Oh, I wish I was on that plane! 17

It’s a dilemma, you know, because at the same time, I joined a gym to stay vital and 18

independent as long as possible. But by strengthening my health, I prolong my life and 19

postpone my death. So I am in two minds: I hate feeling washed-out, so I try to be as 20

healthy and vital as possible (…) but on the other hand I think: How can I die when I feel 21

so vital?(i_22) 22

Page 14 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



15

Other participants felt disconnected from certain responsibilities towards themselves and/or 1

others. A woman, who took all necessary precautions and had even fixed “a provisional date” 2

for her death together with her children, was still the initiator in the set up of so-called ‘villages-3

in-the-city1’ to strengthen social bonds in her neighbourhood, as she was concerned about “her 4

own safety”. Two other participants were still looking for some “meaningful voluntary work” 5

(although they actually gave up any hope of finding it) and at the same time, they were preparing 6

a self-directed death. Two men said that they needed to postpone their self-chosen death because 7

of their “duty to care for their partner” while both were fully prepared to organize their own 8

death “as soon as possible”. A man, who was deeply concerned about the emotions of his 9

children, expressed his doubts this way: 10

…If they all show the same emotions as my daughter, I don’t think I can handle it. Then 11

I’ll probably give up my freedom to decide on my own life. Because then I will see so 12

much sadness, I just can’t handle that… (...) You hurt someone while it’s not necessary, 13

because I don’t have to commit euthanasia. No one forces me. (...) It’s voluntarily. So 14

when I see their sorrow, then well, I actually think, I’m a bit of a coward. (...) I am 15

choosing the path of least resistance. I'm going to solve my problems by taking a lethal 16

dose of medicine. It’s an escape from all my worries. (...) But in a way, I am abandoning 17

them. (…) If I die from a cerebral haemorrhage or I get hurt crossing the street , I’ll be 18

dead too. But, you know, this is voluntarily…(i_10) 19

Three women explicitly expressed a dilemma associated with their spiritual beliefs. The idea of 20

karma or God had so far stopped them from performing a self-chosen death, despite their 21

1 A village-in-the-city [in Dutch: stadsdorp] is a quite recent initiative by and for (older) residents in an urban city neighborhood to ensure modern

neighborliness. Especially older people aim to organize themselves to ensure that they can continue living a independent, active, healthy and safe live as long as possible.

Page 15 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



16

yearning. Two of them were afraid that “a self-determined death goes against the stream of life”, 1

is therefore “bad karma”, so consequently they expected that if they killed themselves, they 2

would have to “pay” for it in the next life. Another woman, who believed in a personal God, 3

explained: 4

Yeah, it’s a crisis of conscience, you know. My ego feels ready to give up on life, but I 5

cannot reconcile it with my conscience, as my heart says: “No, don’t do it, it’s wrong, it’s 6

against God's will!” (...) It’s a dilemma. I live in it. Actually, I'm stuck in it. (...) I've read 7

a lot of books about near-death experiences. People arrive in the other world but then 8

they are often sent back, because their time hasn’t come yet. So how can I decide it’s my 9

time? But on the other hand, I truly feel my life is completed. (…) It’s quite 10

ambiguous.(i_24) 11

This polarity between detachment from life and attachment to life recurred throughout 12

participants’ accounts, and was described by them as “plainly discrepant”, “inconsistent”, 13

“confusing” and in some cases “annoying”. 14

2) Rational and non-rational considerations 15

In participants’ accounts, there was a recurrent sense that on the one side their wish to die was 16

entirely their own and rational, but on the other side, they felt influenced by an inner and much 17

more uncontrolled compulsion. All participants expressed feelings of strong determination and 18

willingness to end their lives. They ‘reasonably’ considered their lives to be over and no longer 19

worth living, based on a negative outcome of “rationally” weighing the pros and cons of living 20

on: “There’ s nothing really that keeps me alive”(i_4). “It is just so totally logical”(i_5). “I just 21

don’t know how to prop up my existence any longer”(i_15). A lady, suffering from several 22

Page 16 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



17

physical discomforts, said: “You know, what kind of life is this? I don’t want to die, but my life is 1

simply unliveable”(i_1). She summed up all her physical sufferings: hearing problems, plus bad 2

eyesight, plus the discomfort of diverticulosis, plus terrible itching, plus the intense pain from 3

some vertebral fractures, and then she firmly concluded: “Death is just most preferable!”(i_1). 4

Another participant related his readiness in an almost calculative way: 5

There’s just no reasonable need to wittingly burden others with my misery, is there? My 6

life is completed. (…) It’s about preventing myself and my family plunging into misery. 7

It’s just unnecessary, so I try to prevent it.(i_25) 8

When participants talked about this weighting and balancing, most people stressed the rationality 9

of this process. Simultaneously, however, they all talked about being driven by bodily or 10

emotional compulsions as well: “It’s just a mix of rationality and emotionality”(i_15). The 11

majority of participants explicitly said that the idea of living on much longer made them “panic” 12

and almost “drove them mad”. One woman questioned her rational choice and interpreted it 13

more as an inner compulsion, as she said: “Choice is a difficult word. I’m also forced by 14

myself”(i_9). Another woman, living in a nursing home, decided to gradually stop taking 15

medicine under a doctor’s supervision, because she felt that her life was no longer worth living. 16

She illustrated the polarity between ‘rationally knowing’ on the one hand and an inner 17

uncontrolled process on the other hand, with these words: 18

Now I’ve already reduced two daily pills: the blood thinners and stomach protectors. (…) 19

They [the doctor and the nurses] all know, that if something happens to me, I don’t want 20

them to drag me to the hospital. (...) In the morning, I’ll take my heart pills. Those will be 21

the last to go. That will cause a lot of pain, but then they’ll give me morphine of course. I 22

Page 17 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



18

know exactly what I want. “It’s a difficult but brave struggle,” the nurses say. But I don’t 1

think it’s brave. It’s just woven into my brain. I can’t help it. The thoughts constantly 2

come into my mind.(i_13) 3

3) Taking control and lingering uncertainty 4

With regard to the ‘organisation’ of the self-directed death, both feelings of certainty and 5

uncertainty emerge. The idea of maintaining and regaining control by organizing a self-directed 6

death is present in most accounts: participants hoped to die before they lose more control, and 7

organizing things gives them a sense of certainty, control, rest and relief. They talked about 8

consulting a right-to-die organisation, to contact a counsellor for personal advice, to gather 9

information about methods for hastening death, self-euthanasia and ways to order the right doses 10

of medicine, or to check the authenticity of online-ordered medication. 11

It feels very relaxed that I’m totally in control now. It's just about putting the liquid in a 12

little bowl with some fruit custard and then eating it, and in about half an hour, I’m 13

gone... I ordered an extra large dosis [of lethal liquid], and I’ve securely wrapped the 14

bottle in plastic, so nothing can happen to it. Before I got this, I first bought hundreds of 15

pills online and I fooled my own doctor into giving me sleeping pills as well. Then [after I 16

managed to collect the right medicine] all of a sudden there was another method with 17

helium gas. So I also purchased two bottles of gas, a plastic bag and a DVD with an 18

introduction on how-to-do-it. It’s all in the closet on the other side of the room. But then, 19

suddenly this liquid was promoted, somewhere in an article [in a right-to-die magazine], 20

so I ordered it and, you know, finally I feel safe. They even tested it! You know, [with 21

those other methods,] I was still afraid something might go wrong. But this is so easy, 22

you know, just a nice bowl of custard, that’s all! I'm really relieved now.(i_23) 23

Page 18 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



19

Participants were pro-actively completing all kind of arrangements to put their personal affairs in 1

order “as well as possible” before they died. Several participants talked about organizing a 2

complete house clean-up, throwing away stuff that was no longer needed, tearing up photographs, 3

letters and official documents like diplomas. One man purchased a paper shredder to shred all his 4

papers. “It’s a way of making your place empty”. Most participants already bequeathed a legacy 5

to the people they leave behind. In addition, some talked about giving away valuable things to 6

meaningful others while they were still alive. One woman even bought and fully refurbished a 7

new house for her children as a remembrance gift after she died. 8

The majority kept a record of (funeral) wishes, in some cases they compiled an extensive wish 9

list regarding a “beautiful farewell”: from song choices, to self-written poems they wanted read 10

at their funeral, and carefully thought out rituals. To ensure that their will would be respected in 11

future situations, respondents signed all kinds of documents such as an advanced directive 12

describing treatment preferences (and refusals), a do-not-resuscitate order, and in some cases a 13

written euthanasia request defining the precise circumstances (such as suffering from dementia) 14

in which they would wish euthanasia to be performed. Several participants appointed a proxy to 15

manage their affairs should they become incompetent. 16

Despite all efforts to ensure the course of their end, the majority of participants still expressed 17

feelings of worry and uncertainty about the dying process; especially about the extent to which 18

they would be able to stay in charge up to the end, about whether they would succeed in avoiding 19

a painful death, and about the “right method” for self-euthanasia. A woman who had formerly 20

suffered a heart attack and had taken all possible precautions to make her wishes for future 21

treatment known, said: 22

Page 19 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



20

Well anyway, it’s loneliness and fear, anxiety you might call it. Look, my mind is still 1

sharp, but if I suffer a terrible stroke again, I’ll probably lose my mind… I want to avoid 2

that! (…) Yes, it’s still in my mind, fear might be a bit exaggerated, but certain images 3

frequently appear in my mind: it can happen to me again. And the big question is: who 4

will help me? Really, who will help me then? So I just want to keep ahead of that.(i_20) 5

Another woman who desperately longed for death and gathered lots of information about self-6

euthanasia, still took her “life-saving medication” because she was afraid of the dying process 7

itself: 8

I suffer from heart failure, (…) but still I take medication. That's a bit contradictory. (…) 9

I definitely do want to go to the other side where all my loved ones are, though I’m 10

scared to death of the crossing. It mustn’t be too painful, oh dear, oh dear! (...) So, it’s 11

just that fear. I'm so afraid to die of suffocation. But still, it’s contradictory. Because if 12

you truly wanted to die, you would say: “Well, it might be very nasty for a bit, but then 13

it’s over”. But I so deeply want to die in a gentle way...(i_21) 14

Many participants also talked explicitly about their fear that self-euthanasia might go wrong. 15

Several questions echoed through many stories: “How do I get the pills in the first place?”; 16

“How can I be certain that I’ll get the right (amount of) pills?”; “Do I have reliable internet 17

addresses?”; “How can I be sure that I don’t cause irreparable damage to my body or end up in 18

a coma?” and; “How can I be sure that I don’t burden others with deep grief or trauma”. For 19

some participants, it became almost an obsession: 20

It's a problem that is constantly in my mind. And there is no solution. It's like, when you 21

lose your keys, you keep searching them until you find them. At least, that’s the way it is 22

Page 20 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



21

with me. “Heavens, where did I put that key?” Anyway, it lingers, it is constantly in your 1

head as something insoluble. Well, it’s the same right now. It’s an on-going, 2

underground search for possibilities: I might try this again, and give that another 3

check…(i_4) 4

While he used all kinds of preparations and precautions to get a grip on his situation, this 5

lingering uncertainty continuously played tricks on him. 6

4) Resisting interference and longing for support 7

For the majority of participants, self-determination, independence and autonomy were core-8

values and an essential prerequisite for a happy life. They placed great value on their individual 9

freedom, on running their own affairs. “It’s about freedom. Total freedom. And now I want to 10

keep that freedom, which I’ve always had, to die in my own way. (...) That's, that's, that's the 11

greatest value in life”(i_10). Participants also consider it their own responsibility: “I just want to 12

keep it under control. (...) And frankly, I think you shouldn’t burden someone else. It’s my 13

decision, so I'm fully responsible”(i_16). 14

However, this independent way of life also seemed to make them feel lonely in the preparation 15

for this ultimate decision. One man, who strongly saw himself as an independent, autonomous 16

person with full personal responsibility for everything he did, put it this way: “You know, it 17

might sound tough, but it also means that you feel completely thrown back upon your own 18

resources. You stand alone”(i_4). And a woman - who had supported her husband who had 19

voluntarily stopped eating and drinking to hasten his death a year before the interview took place 20

- showed one of her favourite postcards depicting a painting of someone lying on a rug, tenderly 21

flown away by swans. She said: 22

Page 21 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



22

Sadly, it’s impossible for me to sail away like this. I'll have to do it all by myself. (...) We 1

were able to support my partner with making choices and with help. But I.., I'll have to 2

do it by myself, at least for a large part... For I don’t want to get my kids in trouble 3

anyway. Or the doctor.(i_5) 4

Despite the fact that most participants clearly stated that they regarded their choice to end life as 5

their “own responsibility” and “an autonomous, independent decision”, preferably made 6

without any interference from others, the majority of participants at the same time paradoxically 7

wanted interference with proper (medical) assistance to actually carry out the act to end life and 8

they felt closely dependent on medical professionals for support and assistance. A lady almost 9

cried: 10

If anyone has a deep respect for life, it's me! ... What the hell! Sure! Really! I mean, 11

because I want it in a respectable way! I want someone… I want someone to help me. I 12

want someone to make it easy for me to, so to say, place my soul in the hands of the 13

Lord.(i_1) 14

Some years earlier, she had attempted suicide with an overdose of morphine, but she survived. 15

Now, she desperately searched for a doctor who was willing to assist her, but her medical 16

condition did not allow medical assistance within context of the Dutch Euthanasia law. 17

5) Legitimacy and illegitimacy 18

Participants’ accounts are full of what good death could be, namely: a self-chosen, self-directed, 19

well-organized, dignified and legal death, preferably at home, surrounded by meaningful others, 20

and with some medical assistance to ensure a smooth and successful attempt without the risk of 21

mutilation. In most accounts, there was tension between longing for legitimacy with regard to 22

Page 22 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



23

their death wish as something “quite normal”, “understandable” and “justified” versus the 1

experience of being judged as doing something “unlawful”, “illegal” and being part of “an 2

underground movement”. This tension appears at the interpersonal and societal levels. 3

On the interpersonal level, participants long for understanding and acceptance of their ideas and 4

plans. All participants highly valued openness and a certain transparency with regard to their 5

death wish: open communication – “in all sincerity” – about their intention to terminate their 6

own life with meaningful others was appreciated. They preferred an “honest” death: “not slip 7

away secretly on your own”, but “carefully and lovingly” say farewell to others. In daily life, 8

however, the majority of participants experienced that talking about their intention to terminate 9

their own life was still a social taboo and was often ignored or received with denial and 10

misunderstanding. One man said: “My son did simply not respond, not in words or in gesture”. 11

A woman, who was met with defensive or angry reactions, told: 12

I chose very consciously to tell my children and my friends. (…) And they all had a go at 13

me. And that wasn’t easy, that’s just not easy. I didn’t know it would be this hard. (...) It 14

came as a huge blow to them. (…) In their eyes, death is a terrible thing and suicide is 15

almost a sin. They [her children] were not raised religiously, but still it goes against their 16

lust for life.(i_12) 17

The idea of a self-chosen death was not only rejected by close family, but other older people like 18

neighbours or occupants of the same nursing home also “got mad” at them: “I cannot talk about 19

it with people. They say: “Are you crazy!” (…) I’d better keep it to myself”(i_19). 20

On the societal level, they felt “let down” and “abandoned” by society and the government, and 21

felt “inhibited” in their freedom of choice. The majority of participants were of the opinion that 22

Page 23 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



24

they had “the right to a properly assisted death” by a doctor. They advocate a more liberal 1

interpretation of the Euthanasia Act. They claim to have a right to ask a physician to perform 2

euthanasia or prescribe lethal medication, even if their only adverse condition is old age and the 3

danger that they might lose control of their mind and body. As one man put it: 4

“Some potentates in The Hague [city of government] are forbidding you to take your own 5

life [in a dignified way]. You are deprived of your freedom. They make it impossible, at 6

least to do it in a legal way, openly”(i_4). 7

Others mainly attributed it to “the dictatorship of the church” or “the unwillingness of 8

physicians”. They felt forced to organize death in an ‘illegal’ way, for example because they 9

had to tell lies to their general practitioner to get the required medication, or because they were 10

afraid that people who helped them order medication over the internet might be prosecuted. Two 11

women rejected the idea of claiming the right to dying assistance because of their lack of a 12

serious medical condition. They emphasized it was “irresponsible to burden a physician with 13

the act of terminating the life of someone like me” [i.e. a person who is not suffering from a 14

unbearable or terminal illness] as well as the fact that self-determination inherently means that 15

one is also fully responsible for the final act oneself. 16

To underline the natural, understandable and legitimate character of the self-chosen death in 17

older people, some participants made analogies with animal behavioural patterns: “To me, it 18

mirrors a habit in the animal world (...) It’s often seen that animals who feel they have reached 19

the end of life, withdraw and just wait until they die. So why can’t we?”(i_10) Others drew an 20

analogy between their death wish and ancient cultural habits: 21

Page 24 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



25

In former times, we also put grandma on an Artic ice floe with a bottle of gin. (...) If 1

grandma was no longer useful to the clan, they said: ‘Well grandma, enough is enough. 2

We have run out of food so the children come first. (...) Why should it be any different 3

now? Yeah I mean it. (...) There is scarcity here too [energy and health care 4

capacity].(i_5) 5

Most participants were members or contributors of at least one Dutch right-to-die organization, 6

in the hope that these organizations would “represent their interests” and force a political 7

breakthrough, namely the legalization of assisted self-chosen death in older people and the 8

availability of a so-called ‘Drion pill’ [i.e. an end-of-life pill that would enable older people to 9

end their own life if they wished to do so]. This pill was often mentioned by participants as “the 10

most comfortable solution to their problem” imaginable which would “surely made them feel at 11

ease”. As one respondent put it: “It would be a great relief to have that pill on my 12

nightstand”.(i_6) However, two participants also told that if they had had an end-of-life-pill, 13

they probably would have taken it in a moment of despair. “Now I have to take an antiemetic 14

three days in advance to prevent vomiting”, which stopped them from making a premature 15

decision. 16

17

Discussion 18

Our study characterizes the ‘in-betweenness’ (or liminality) of intending and performing self-19

directed death as living in a paradoxical position. Participants’ accounts are permeated with 20

ambivalences and ambiguities. They felt both detached and attached; they felt both ready to give 21

up on life and they tended to postpone hastening death; they both had a sense that their wish to 22

Page 25 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



26

die was sound and rational and they sensed an inner and much more uncontrolled compulsion; 1

they both tried to assure themselves of ways to organize a ‘good death’ and they were threatened 2

by uncertainties and worries as they realized their impossibility to fully control death. Both sides 3

coexist and are inextricably intertwined. Obviously, balances differ and shift from account to 4

account, but a paradoxical tension is present in every included story, indicating that living in-5

between intending and actually performing a self-chosen death is an existential challenge, 6

characterized by the complementarity between volition and compulsion as an inherent feature of 7

this decision-making process. 8

Previous research has presented causal and risk factors associated with the wish to die, suicidal 9

ideation and suicidal behaviour in older people 21-23

. However, there is very little empirical 10

research on the question of how people experience the ‘in-betweenness’ of intending and 11

performing self-directed death. This study contributes to literature by presenting the first ‘real-12

life’ account of what it means to live this ‘in-betweenness’. It also sheds new light on a mainly 13

theoretical debate about rational suicide by offering empirical insights into the tensions and 14

ambivalences of living towards the ultimate decision to opt for a self-chosen death or not. 15

Our results question the conception of ‘rational suicide’ as an autonomous, free decision without 16

pressure. The self-chosen death in the older people we studied appears to be neither decisively 17

non-rational nor rational. On the one hand, participants were of the opinion that they made a 18

‘reasonable’ assessment of their situation. They perceived that they would be better off dead. 19

They were assumed to have the ability make sound decisions, as there was no evidence of severe 20

psychological disturbance. And generally, their considerations were in consonance with their 21

fundamental interests and values. These characteristics are very similar to the characteristics 22

mentioned in the literature on rational suicide 5-8. On the other hand, however, participants also 23

Page 26 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



27

talked about being forced by inner bodily and emotional compulsions and attachments. The self-1

directed death emerges as an ultimate escape to safeguard oneself and a way to exert control. The 2

older people involved - often strong-willed, autonomous and rationally oriented persons, who 3

highly value an independent and self-determined life - failed to live according to their values and 4

ideals. They felt threatened in their abilities, their performance and their identity, no longer able 5

to live a perceived worthwhile life. Therefore, they preferred death over life, as they consider 6

death to be the end of sorrow, pain and stress. These findings support the idea of Kerkhof and De 7

Leo11 that “rationality may be a very misleading concept for a proper explanation of suicidal 8

behaviour” and that true reasons – such as anxiety, fears or threats of losing core aspects of one’s 9

identity – should not be obscured. Indeed, our study illustrates the inadequacy of considering this 10

decision-making process as a matter of rational, deductive calculation, as these existential 11

choices cannot be captured in logical constructions without taken into account the sense 12

perception. Rather, the decision-making process is characterized as an embodied process 13

influenced by all kinds of existential entanglements. 14

Participants commonly perceived a self-chosen death to be a blessing, a benefit, an improvement 15

of their lot, because it would keep them from (further) harm, rather than causing it. It was often 16

seen as a ‘good death’, which is consistent with other studies that have indicated voluntariness 17

and being-in-control as constituents of a ‘good death’ in modern Western societies 24-28

. For most 18

participants, human suffering had no positive moral significance, so why maintain life at all 19

costs? To some extent the self-chosen death even appeared to be the consequence of participants’ 20

commitment to personal, moral or aesthetic values, as for most participants self-development, 21

self-determination, and independence were paramount. The termination of one’s life could be 22

seen as a clear refusal and/or incapacity to reach a compromise with and adapt to life-as-it-is. 23

Page 27 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



28

Further research 1

Our study describes the ‘in-betweenness’ of intending and performing self-directed death. It is, 2

however, unpredictable whether these individuals will ultimately really opt for a self-chosen 3

death. However, in hindsight the population under study turned out to be determined. In the year 4

after the interviews, the interviewer received eight notices of older people who indeed engaged 5

in life-ending behaviour and died via a self-chosen death. While our phenomenological approach 6

does not aim to clarify causalities, but aims to describe lived experiences, it raises the intriguing 7

question what essentially characterizes these people that makes them so determined to die at a 8

self-appointed moment? 9

The Interpersonal Theory of Suicide29 indicates that people with a wish to die are most at risk 10

when two interpersonal themes are simultaneously present namely: thwarted belongingness and 11

perceived burdensomeness. Our study seems to confirm this association. In an earlier article, we 12

already thematized the sense of non-belonging and not mattering in this population14. This 13

current paper shows that participants frequently talked about the fear of placing a burden on 14

others being old and dependent, but also about their concerns of burdening others with the 15

impact of a self-chosen death (such as loved ones or the physician). However, more research on 16

this topic needs to be undertaken to clarify why the population under study is highly determined 17

on dying at a self-appointed moment. 18

We did not analyse the outcomes of the HADS in relation to the interview data. In the context of 19

this research project our sole aim was to gain a preliminary indication as to whether the wish to 20

die was driven by a severe depression or not. However, it is noteworthy that in the population 21

under study, a close association between death wishes and depression is cautiously questioned, 22

because there was an indication of a severe depression in only one case. This seems in 23

Page 28 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



29

consonance with other research that also indicates that suicidal ideation in old age often does not 1

meet the criteria for clinical disorders such as depression or anxiety30, but much more research 2

on this topic is needed to further explore this. 3

Practical implications 4

When faced with mentally competent older people who sincerely believe that their life is 5

completed and no longer worth living, mental health professionals are highly challenged 31: What 6

is the appropriate response? At least for this sample, the concept of ‘rational suicide’ as an 7

autonomous, free decision without pressure is questioned. Rationality might contribute to the 8

decision to terminate one’s life, but these data indicate that these people should not be 9

approached merely as independent, autonomous and self-determining agents, but rather 10

acknowledged as human beings struggling with life in all its ambiguity. It thus appears highly 11

relevant to realize the possible disastrous impact of empowering people in their ‘rational, 12

cognitive’ suicide wish 8 32 33

, as this study found that it probably is not a strictly rational 13

consideration. The findings also indicate the need for sustained ethical engagement with these 14

people and their wishes and desires, recognizing that they are highly determined to die at a self-15

appointed moment, although these wishes appear to be fluid and might shift or change. 16

Policy implications 17

Most participants were in favour of a more liberal interpretation of the Euthanasia Act and 18

claimed to have a right to assisted dying, even if they did not suffer unbearably from a classified 19

medical condition. Our study provides policy makers with in-depth insight into what it means to 20

live with an age-related wish to die. In this way they may become more sensitized to the 21

significant threats these people experience. It highlights the need for due consideration of all 22

Page 29 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



30

ambiguities and ambivalences present after a presumed rational decision has been made in order 1

to develop conscious and careful policy for this particular group of older people. 2

Reflections on strengths and limitations 3

We took several steps to enhance validity and reliability: we worked in a research team of three 4

researchers. The first author performed the data-collection, and all were involved in the analysis. 5

We undertook member checks of the data collected, not only for ethical reasons but also to verify 6

that the participants feel the narrative report reflects what they actually intended to say. Despite 7

some minor factual remarks, participants confirmed that the narrative reports fully reflected their 8

stories. By giving an in-depth methodological description we attempt to provide transparency 9

and allow integrity of results to be scrutinized. To reduce the effects of biases, beliefs and 10

assumptions as much as possible, a reflective commentary was used and frequent debriefing 11

sessions between all researchers’ were organized during data gathering and data analysis. 12

However, it should be noted that all participants were Dutch citizens living in the Dutch context 13

where euthanasia has been legalized and an open and progressive public debate is going on. 14

Besides, twenty-tree participants were members of the Dutch right-to-die organization. This 15

raises questions whether these outcomes can be generalized to different persons, settings, and 16

times. Yet it is important to note that a growing awareness about death and dying, and the debate 17

on how to determine time and manner of death has become more common, not only in the 18

Netherlands but in the Western world as such 24-28

. Although cultural and societal differences 19

may limit transferability of these results to other countries, the Dutch situation can certainly 20

inform the debate on the legalization of assisted dying in other Western countries. 21

For the Netherlands, our findings are considered to be generalizable to other similar populations 22

Page 30 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



31

as we maximized variation within our sample. By providing thick description of the phenomenon, 1

we tried to allow readers to have proper understanding and enable them to compare the 2

descriptions with those that they have seen emerge in other situations. Nevertheless, more 3

research on this topic is recommended to compare empirical findings in different countries and 4

cultures. 5

Page 31 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



32

Contributorship statement: All authors were responsible for the research design. EvW 1

obtained funding, took lead responsibility for ethical aspects of the research, conducted all 2

interviews, undertook and/or checked all transcripts along with a transcriber, led the data 3

analysis, and wrote the manuscript with input from all co-authors and is guarantor. CL and AG 4

read the transcripts. The analysis took place gradually in discussions between the three authors. 5

CL and AG both contributed to the writing and revision of the manuscript. 6

No competing interests: We have read and understood BMJ policy on declaration of interests 7

and declare that we have no competing interests. 8

Funding: This work was supported by the Netherlands Organisation for Scientific Research 9

(NWO). Grant number: 023.001.035 10

Data sharing statement: No additional data are available. 11

Page 32 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



33

References 1

1. van Rein PS. Petitioning for completed life: A thematic content analysis. Walden 2

University, 2013. 3

2. Buiting HM, Deeg DJH, Knol DL, et al. Older peoples' attitudes towards euthanasia and an 4

end-of-life pill in The Netherlands: 2001–2009. Journal of Medical Ethics 2012. 5

3. Raijmakers NJH, van der Heide A, Kouwenhoven PSC, et al. Assistance in dying for older 6

people without a serious medical condition who have a wish to die: A national cross-7

sectional survey. Journal of Medical Ethics 2013. 8

4. van der Heide A, Onwuteaka-Philipsen B, van Thiel GJMW, et al. Kennissynthese Ouderen 9

en het zelfgekozen levenseinde [Research synthesis Older people and the self-10

chosen death]: Den Haag: ZonMw, 2014. 11

5. Battin MP. Can suicide be rational? Yes, sometimes. In: Werth JL, ed. Contemporary 12

perspectives on rational suicide, 1999:13-21. 13

6. Lester D. Can suicide be a good death? Death Stud 2006;30(6):511-27. 14

7. Hewitt J. Why are people with mental illness excluded from the rational suicide debate? 15

International Journal of Law and Psychiatry 2013;36(5–6):358-65. 16

8. Werth Jr JL. Rational suicide. Implications for mental health professionals. Washington: 17

Taylor & Francis, 1996. 18

9. Moore SL. Rational suicide among older adults: a cause for concern? Archives of 19

Psychiatric Nursing 1993;7(2):106-10. 20

10. Moody HR. ''Rational suicide'' on grounds of old age? Journal of Geriatric Psychiatry 21

1991;24(2):261-76. 22

11. Kerkhof AJ, De Leo D. Suicide in the elderly: A frightful awareness. Crisis: The Journal of 23


12. Richman J. A Rational Approach to Rational Suicide. Suicide and Life-Threatening 25

Behavior 1992;22(1):130-41. 26

13. Yuill KL. Assisted suicide: The liberal, humanist case against legalization. Bastingstoke: 27

Palgrave Macmillan, 2015. 28

14. van Wijngaarden EJ, Leget CJW, Goossensen A. Ready to give up on life: The lived 29

experience of elderly people who feel life is completed and no longer worth living. 30

Social Science & Medicine 2015. 31

15. van Wijngaarden EJ, Leget CJW, Goossensen A. Till death do us part: The lived 32

experience of an elderly couple who chose to end their lives by spousal self-33

euthanasia. The Gerontologist 2015. 34

16. Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatrica 35

Scandinavica 1983;67(6):361-70. 36

17. Finlay L. Phenomenology for therapists: Researching the lived world. West Sussex: Wiley-37

Blackwell, 2011. 38

18. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative research in 39

psychology 2006;3(2):77-101. 40

19. Patton MQ. Qualitative research and evaluation methods. Thousand Oaks, Calif.: Sage 41

Publications, 2002. 42

20. van Manen M. Phenomenology of practice: Meaning-giving methods in phenomenological 43

research and writing. Walnut Creek, California: Left Coast Press, 2014. 44

Page 33 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



34

21. Rurup ML, Pasman HR, Goedhart J, et al. Understanding why older people develop a 1

wish to die: A qualitative interview study. Crisis: Journal of Crisis Intervention & 2

Suicide 2011;32(4):204-16. 3

22. Rodda J, Walker Z, Carter J. Depression in older adults. BMJ 2011;343:d5219. 4

23. O'Connell H, Chin A-V, Cunningham C, et al. Recent developments: suicide in older 5

people. BMJ 2004;329(7471):895. 6

24. Pool R. “You’re not going to dehydrate mom, are you?”: Euthanasia, versterving, and 7

good death in the Netherlands. Social Science & Medicine 2004;58(5):955-66. 8

25. Chabot BE, Goedhart A. A survey of self-directed dying attended by proxies in the Dutch 9

population. Social Science & Medicine 2009;68(10):1745-51. 10

26. Seale C. Changing patterns of death and dying. Social science & medicine 11

2000;51(6):917-30. 12

27. Kellehear A. A social history of dying. Cambridge; New York: Cambridge University Press, 13

2007. 14

28. Clark D. Between hope and acceptance: the medicalisation of dying. BMJ: British 15

Medical Journal 2002;324(7342):905. 16

29. van Orden KA, Witte TK, Cukrowicz KC, et al. The interpersonal theory of suicide. 17

Psychological review 2010;117(2):575. 18

30. Corna LM, Cairney J, Streiner DL. Suicide ideation in older adults: Relationship to 19

mental health problems and service use. The Gerontologist 2010;50(6):785-97. 20

31. McCue RE, Balasubramaniam M, Kolva E, et al. Rational suicide in the elderly: Mental 21

illness or choice? The American Journal of Geriatric Psychiatry 2015;23(3):S41-S42. 22

32. Lester D. Rational suicide: is it possible? Reflections on the suicide of Martin Manley. New 23

York: Nova Science Publishers, 2014. 24

33. Battin MP. Rational suicide: how can we respond to a request for help? Crisis: The 25

Journal of Crisis Intervention and Suicide Prevention 1991. 26

27

Page 34 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



1

Appendix 1 - The interview guide Researching the lived experience of older people who feel life is completed and no longer worth living

Introduction of the interview

- Acknowledgments for time and participation

- Information about the research project and the procedure

- Information about the character of the in-depth interview (open structure and the

focus on the thorough exploration of the lived experience)

- Possibility for questions about the project and the interview

The interview

Introductory question

- Can you tell me in what way our call to participate in this study did appeal to you?

Sequence 1: About completed life

- Can you describe what it means to experience that life is completed1?

- Can you focus on a particular example of this experience? Can you describe a

specific event or particular experience when you (first) experienced that life is

completed?

- Can you describe as fully as possible how this experience influences your daily

life?”

Sequence 2: About the wish to die

- Can you describe what it means to have a strong desire to die?

- Can you describe as fully as possible how the wish to die influences your daily

life?

- Can you describe a moment when the desire for death was very strong?

- Can you describe a moment when it was less pronounced, more at the

background?

- What kind of things influence your wish to die?

Sequence 3: About a self-directed death (if suitable)

- Tell me about your preference of a self-directed death. Can you explain why it is

important to you?

- Tell me about the process of how your decisions / ideas developed.

- What is to like to live in this in-between period: living on while ideating on a self-

directed death?

1 NOTE: if a participant used another word, such as ‘life is over, ready to give up on life, tired of life, the interviewer used this

way of saying in her questions to stay as close as possible to the participant’s experience.

Page 35 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from



2

Elaborating questions

In order to encourage participants to articulate their experiences in detail, during the

interview, the interviewer keeps on posing questions such as:

- Can you describe the experience as much as possible as you live(d) through it?

- Please, try to describe the experience from an insider-perspective, as it were

almost like a state of mind. Tell me about the feelings, the mood, the emotions.

- Can you elaborate a bit more on that as concretely as possible?

- What do you mean by…?

- What is it like…?

- In what way?

After the interview

- Closing words and summarization

- Voluntary administration of the HADS

- Ask for the completed personal information form

- Acknowledgments

- Appointments about member check and privacy

- Appointments about reciprocal possibility to contact for any additional info

- Appointments about possibility aftercare

-

Page 36 of 36


BMJ Open

123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960


http://bmjopen.bm

j.com/

BM



nloaded from


BMJ Open€¦ · 10 suicide’ (also referred to as ‘a self-chosen death’, ‘balance-sheet suicide’, ‘self-euthanasia’, ‘self-11 deliverance’ or ‘surcease’). There

Documents