Article Text

Download PDFPDF

Paper
‘Unbearable suffering’: a qualitative study on the perspectives of patients who request assistance in dying
  1. Marianne K Dees1,
  2. Myrra J Vernooij-Dassen2,
  3. Wim J Dekkers3,
  4. Kris C Vissers4,
  5. Chris van Weel1
  1. 1Department of Primary and Community Care, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands
  2. 2Department of Primary and Community Care, Radboud University Nijmegen Medical Centre, Scientific Institute for Quality of Healthcare, The Netherlands
  3. 3Radboud University Nijmegen Medical Centre, Section of Ethics, Philosophy and History of Medicine, Scientific Institute for Quality of Healthcare, The Netherlands
  4. 4Department of Anesthesiology, Pain and Palliative Medicine, Radboud University Nijmegen Medical Centre, The Netherlands
  1. Correspondence to Marianne K Dees, General Practitioner, Radboud University Nijmegen Medical Centre, Department of Primary and Community Care, Internal postal code 117, PO Box 9101, 6500 HB Nijmegen, The Netherlands; m.dees{at}elg.umcn.nl

Abstract

Background One of the objectives of medicine is to relieve patients' suffering. As a consequence, it is important to understand patients' perspectives of suffering and their ability to cope. However, there is poor insight into what determines their suffering and their ability to bear it.

Purpose To explore the constituent elements of suffering of patients who explicitly request euthanasia or physician-assisted suicide (EAS) and to better understand unbearable suffering from the patients' perspective.

Patients and methods A qualitative study using in-depth face-to-face interviews was conducted with 31 patients who had requested EAS. The grounded theory approach was used to analyse the data.

Results Medical, psycho-emotional, socio-environmental and existential themes contributed to suffering. Especially fatigue, pain, decline, negative feelings, loss of self, fear of future suffering, dependency, loss of autonomy, being worn out, being a burden, loneliness, loss of all that makes life worth living, hopelessness, pointlessness and being tired of living were constituent elements of unbearable suffering. Only patients with a psychiatric (co)diagnosis suffered unbearably all the time.

Conclusions Unbearable suffering is the outcome of an intensive process that originates in the symptoms of illness and/or ageing. According to patients, hopelessness is an essential element of unbearable suffering. Medical and social elements may cause suffering, but especially when accompanied by psycho-emotional and existential problems suffering will become ‘unbearable’. Personality characteristics and biographical aspects greatly influence the burden of suffering. Unbearable suffering can only be understood in the continuum of the patients' perspectives of the past, the present and expectations of the future.

  • Unbearable suffering
  • qualitative research
  • palliative care
  • euthanasia
  • patients'
  • perspective
View Full Text

Statistics from Altmetric.com

Introduction

The main objectives of medicine are to relieve patients' suffering and cure their illness.1 Once patients can no longer be cured, palliative care is employed to improve the quality of life by prevention and relief of suffering.2 The availability of palliative care has increased in the past decades.3 4 Nevertheless 1 in 10 palliative care patients have asked, at some point, a specific question about assistance in dying to alleviate suffering.5–7 In states and countries where euthanasia or physician-assisted suicide (EAS) has been legalised—Oregon, Washington State, Montana, Switzerland, Belgium, Luxembourg and the Netherlands—unbearable suffering is a major consideration in the professional assessment of a request for EAS.6–10 In an integrative literature review we established that unbearable suffering in the context of a request for EAS has a medical, a psychological, a social and an existential dimension.11 It also made it obvious that despite its essential place in end-of-life decision-making, there is no generally accepted definition of ‘unbearable suffering’ and there is a lack of knowledge of patients' perceptions of ‘unbearable suffering’.11 In the Netherlands, patients who explicitly request EAS are expected to describe their situation in terms of a lack of hope and an inability to cope with their suffering. This provides a unique opportunity to study unbearable suffering from the patient's perspective. Qualitative research using in-depth interview techniques is best suited to uncover unbearable suffering from the patients' perspectives. Understanding ‘suffering’ and knowledge of its constituent elements provides a tool that might contribute to an early detection and a proactive approach to prevent suffering becoming unbearable.

We conducted a study to explore what patients who had explicitly requested EAS considered ‘suffering’ to entail and what made their suffering ‘unbearable’.

Methods

Study design

We used a design of qualitative, in-depth, face-to-face interviews.12 13 Purposeful sampling was used to ensure diversity in diagnosis.

Recruitment and patient selection

With the assistance of the Support and Consultation on Euthanasia in the Netherlands (SCEN) network, we recruited patients who had explicitly requested EAS. We also approached a hospice, a hospital and a nursing home and placed a notice in the journal Right to die—NL. To ensure diversity in the sampling of perceived suffering, we included both patients whose EAS requests had been granted and denied. The treating physician was asked to inform the patient about the study. The interviewer contacted the patient by telephone and written information was sent by mail. Patients who reacted to the notice could directly contact the interviewer by phone. All patients signed an informed consent form.

Interviews

The interviews took place at the patients' residences and lasted 30–120 min. Patients were interviewed alone to ensure that the caregiver's presence did not influence the information they gave. We developed an interview guide (box 1) on the basis of the research question and a literature review.11 Each interview started with a question about the development of the request. Subsequently constituent elements of suffering were explored. All patients were asked about their ability to enjoy things. Finally each patient was asked what made suffering unbearable. The interviewer (MKD), a family physician and SCEN specialist, closely followed the interview line brought forward by the patient.14 The interviews were audio-taped and transcribed verbatim. Demographics were collected before the interviews and the medical records and SCEN reports were retrieved afterwards.

Box 1

Interview guide

  • How did your request for euthanasia or physician-assisted suicide develop?

  • What made your request topical?

  • What is your suffering made up of?

  • What makes your suffering unbearable?

Definitions

In accordance with the Dutch law, euthanasia was defined as the termination of life on the explicit request of the patient by a physician with the intention to end hopeless and unbearable suffering. Physician-assisted suicide was defined as assisting in the suicide of a patient by a physician. A request for EAS is called ‘explicit’ when the patient has specifically asked the physician to (help) end the patient's life.

Qualitative data analysis

We used the constant comparative method to analyse the data.15 This method is part of the grounded theory approach in which concepts emerge as theory is formed. We used ATLAS.ti version 5.5 software to process the data. Analysis started as soon as the first data were collected and continued with each additional interview. The first step in the analysis was data reduction; two researchers (MKD and a psychologist) coded the transcript independently to minimise subjectivity. Coding is the interpretive process in which we give conceptual labels to the data. The purpose is to attain new insights by breaking through standard ways of thinking about phenomena reflected in the data.15 The sequence was as follows: we used codes that were closely related to the text fragments. After five interviews, we compared the analysts' codes and three researchers (MKD, a psychologist and MJV) discussed them until they reached consensus. Then a new coding scheme was developed for further use. New codes could be added. When no more new codes about suffering appeared, we were satisfied that saturation had been reached. We grouped codes referring to the same phenomenon in categories and categories in themes. MKD analysed all transcripts again to come to an understanding of how the different elements of suffering contributed in individual cases to unbearable suffering. Finally, a grounded theory approach was used to derive hypotheses about unbearable suffering from the data. Five researchers reached consensus about the codes, categories and themes in peer-group discussion. This group included two family doctors (CW and MKD), one of whom has experience with EAS (MKD), a sociologist experienced in qualitative end-of-life research (MJV), an ethicist (WJD) and a palliative care specialist (KCV). They used an iterative procedure and re-reading to facilitate the discussion.

Results

Between April 2008 and July 2009 45 patients were prepared for interviewing. Twelve were excluded after interviewing because they had not made an explicit request. Two patients died before their interviews could take place. Altogether, 31 patients were included in the study. When data from the last seven interviews were entered, no new codes emerged and we concluded that saturation had been reached.

Patient characteristics

The participants varied in gender, age, marital status, educational level and residence. They came from rural and urban areas all over the Netherlands. Except those with a psychiatric diagnosis, these patients showed a high degree of self-realisation in social, occupational and economic status. Five patients considered themselves religious. The requests of 11 patients were not granted. In eight cases, this refusal was directly related to the absence of a physical diagnosis (four patients had psychiatric diseases and four patients were tired of living). Two refusals were related to the institutional policies of the places of residence. These patients died as a result of non-treatment of pneumonia and palliative sedation. The request of one patient with cancer was refused because of the coexistence of a depression. He refused treatment and stopped eating and drinking. The request of a second patient with cancer was postponed by successful treatment of her depression. According to the medical records and the reports of SCEN consultants all patients were clinically assessed on depression. The life expectancy of the patients with cancer, at the moment EAS was performed, varied from 2 to 120 days with a mean of 34 days (table 1).

Table 1

Characteristics of patients explicitly requesting assistance in dying

The patients' perspectives on suffering

The patients described suffering in a multiplicity of very individual ways (table 2). The coding of their statements resulted in 21 categories from which, in accordance with our literature review11 four themes emerged: medical, psycho-emotional, socio-environmental and existential (table 3).

Table 2

Remarks about unbearable suffering made by patients who explicitly requested assistance in dying

Table 3

Themes, categories and codes of suffering named by patients explicitly requesting assistance in dying

The medical context

Suffering always originated in symptoms of illness or ageing. Within the medical theme five categories could be distinguished: physical, cognitive and psychiatric symptoms, side effects of medical treatment and decline.

The physical symptoms varied greatly, depending on the specific course of the illness or ageing. Of the physical symptoms general symptoms such as fatigue, pain, feeling miserable increased suffering more than tractus related symptoms. Decline was often mentioned as an important reason for suffering. Cognitive symptoms caused much suffering. Patients with psychiatric symptoms emphasised the burden of their suffering. The side effects of medical treatment for psychiatric conditions and cancer were named as an additional cause for suffering.

The psycho-emotional context

The six subcategories in the psycho-emotional theme were loss of self, negative feelings, fear of future suffering, dependency, loss of autonomy and mental exhaustion. With the exception of patients with a psychiatric diagnosis, the patients described themselves as autonomous persons aiming to be significant to others, in favour of communicating with others, preferring an active lifestyle. Loss of self was a great cause of suffering (table 2). Some patients expressed the presence of negative feelings that took centre stage in their minds and thus added to their suffering. The patients mentioned a wide range of fears of future suffering. These fears were related to the course of illnesses, physical symptoms, the process of dying, decline, loss of self-determination or anxiety. Sometimes loss of autonomy was experienced as a threat to personality. Being treated as a patient especially when others had to take over everyday tasks or when being bedridden was described as suffering. The wish to have a say about their death was another expression of the desire for autonomy. Many patients suffered from mental exhaustion.

The socio-environmental context

The six subcategories in the socio-environmental theme were loss of social significance, communicative problems, discontent with residential circumstances and quality of care, being a burden, loneliness and biographical aspects. The patients mentioned loss of social significance often. Exclusively patients with motor neuron disease or dementia mentioned communication problems, but such problems were of minor importance compared with other symptoms of these diseases. A prospect of a possible transfer to a nursing home added to suffering.

Patients who had high-quality informal care and strong family connections and who had been the central figures in their families were particularly concerned about being a burden.

Those who were widowed, patients with psychiatric problems and patients forced to live separately from their partners were lonely. Aspects of the patients' past, such as sexual abuse, a bad marriage, or childhood in a war camp had a very individual influence on their suffering.

The existential context

All patients experienced existential suffering. There were four categories within this theme: loss of important and pleasurable activities, hopelessness, pointlessness and being tired of life. Loss of important and pleasurable activities comprised a long list of activities, which included managing the household, looking after the grandchildren, gardening, going out for dinner, companionship, reading, playing tennis, travelling abroad, listening to music and singing in a choir, being significant to others and having a wonderful job. All patients mentioned hopelessness. Hopelessness inevitably gave rise to feelings of pointlessness that resulted in being tired of life.

The patients' perspectives on unbearable suffering

Patients who, in contrast with the other patients, emphasised continuous feelings of unbearable suffering, saying “to be unable to enjoy anything anymore”, had a psychiatric diagnosis. Subcategories of existential and psycho-emotional themes contributed greatly to the perception of suffering becoming unbearable (table 4). As an 80-year-old man, a former mathematics teacher and musician put it: “I can't do anything anymore, I used to play music, participated in various clubs, all so very companionable, I had to say farewell to all of it. It feels so awful just waiting to become bedridden and then waiting to die”. All patients considered hopelessness to be a main factor in the perception of unbearableness. This is illustrated by a 55-year-old woman with nasopharyngeal cancer: “You lie on a bed and none of the normal functions come back. They will never come back and it will only get worse”.

Table 4

Occurrence in themes and subcategories of unbearable suffering among patients

In addition, patients placed unbearable suffering in the broader context of their personality characteristics. They explained how the irreversible consequences of disease or ageing resulted in loss of self, loss of autonomy and mental exhaustion until they felt themselves no longer the persons they used to be. This is exemplified by a 53-year-old woman with lung cancer: “I lost my dignity, lying in bed in diapers, I am no longer the independent person I used to be”. In the medical theme, untreatable neurological pain, fatigue, decline and particularly psychiatric symptoms made the suffering unbearable. A 65-year-old woman with neuropathic pain, on maximum analgesic treatment, expressed this as: “I am in pain all the time, I am in pain at night, I wake up with pain and I go to bed with pain. If they could only take away half my pain I wouldn't be thinking about euthanasia”. In the socio-environmental theme, loneliness and being a burden often contributed to unbearable suffering, but these elements mostly were of minor importance.

Most patients, when asked about unbearable suffering, made up a balance of their past, their present and their expectations of the future. When this balance gave rise to feelings of hopelessness (often combined with feelings of pointlessness and being tired of life), they considered their suffering unbearable. As a 48-year-old woman putted it: “It is such an aggressive form of cancer. I saw all my energy going down the drain—what I could still do last week I can't do at all now. I really enjoyed my life, but now I have just to wait and see how things go and what death will look like”. This was in great contrast with one 94-year-old woman, who was in excellent psycho-emotional condition and had no classifiable disease. She was living in a caring environment, communicating in a lively way and e-mailing with her extensive international network. She requested assistance in dying for reasons of being ready to quit life without any suffering at all.

Discussion

This study has brought to light the fact that unbearable suffering, from the perspective of patients who explicitly request EAS, is the outcome of an intensive process that originates in the symptoms of illness or ageing. The same elements from the medical, psycho-emotional, socio-environmental and existential themes, as we identified earlier in a literature review,11 appeared to cause suffering. Especially elements from the existential and psycho-emotional themes contributed to unbearable suffering and hopelessness was at the centre. Patients considered physical suffering less important, as earlier studies also demonstrate.13 16–22 This may suggest that physical suffering had been palliated before the experience of unbearable suffering and the request for EAS came about. It became evident that uncontrollable physical symptoms, such as fatigue and neurological pain, contributed considerably to unbearable suffering through its negative effects on the motivations for living. For most patients who request EAS, time is limited; this affects the possible treatment of elements of unbearable suffering. It strengthens the importance of an early detection and treatment of symptoms like negative feelings, fears of future suffering, being worn out, loss of autonomy, loss of social significance, loss of activities, pointlessness and being tired of life to prevent suffering becoming unbearable.

Our study made obvious that the patient's request for EAS does not exclusively originate in feelings of unbearable suffering. In agreement with earlier findings, most patients did not experience unbearable suffering continuously.13 In addition, we found that patients who emphasised continuous feelings of unbearable suffering were diagnosed with a depression. Patients without a depression held the opinion that they were in an unbearable situation and named reasons to ask for assistance in dying in terms of unbearable suffering. Earlier research showed that a depressed mood is associated with a four times higher risk of a request for EAS.23 This underlines the importance of ruling out a depression before agreeing to a request. In agreement with earlier studies, physicians were unwilling to cooperate in requests with psychiatric (co)diagnosis.24 25

We found that patients evaluated their suffering in the context of personality characteristics, life history and existential motivations. The moment this evaluation evoked strong feelings of hopelessness, they perceived their suffering as unbearable. This progression of suffering to the point of hopelessness is compatible with a theoretical model of unbearable suffering,26 which implies that the outcome of unbearable suffering can only be fully understood from the individual patient's perspective and not so much from the burden of physical signs and symptoms. Individual patients emphasised the loss of all that life made worth living, felt that they were no longer the persons they used to be—Cassell's disintegration of the person1—and had no hope of improvement.

Our study underlines that it is possible to carry out research with patients in end-of-life situations. Researchers and practitioners have long been concerned about burdening vulnerable patients in the last phase of their lives with research. Only in the past decade has such research become acceptable.27 28 We found physicians prepared to ask terminally ill patients to participate in research. Patients found it useful to know that others would benefit from their experiences.

The study has some limitations. The findings should be placed in the context that unbearable suffering is among the criteria of lawful EAS in the Netherlands. Consequently, patients might feel urged to express the reasons for their request in terms of ‘unbearable suffering’. It is unclear how this legal aspect affects the patients' phrasing of their request. It is unknown whether the participating physicians selected patients in view of specific elements of suffering or unbearable suffering. We do not know what kind of patients refused participation and whether refusal was related to the nature of suffering.

We hypothesise that, while suffering is rooted in the symptoms of illness or ageing, the existential and psycho-emotional themes determine how much hope there is and whether the patient is able to bear the suffering. Unbearable suffering can only be understood in the continuum of the patient's perspectives on the past, the present and expectations of the future. Without hopelessness, there is no perception of unbearable suffering.

These findings have implications well beyond decisions about EAS. Physicians, nurses and other healthcare professionals who practice palliative care should be able to understand patients' existential and psycho-emotional suffering (including the hopelessness) in an early stage to prevent suffering from becoming unbearable.

Acknowledgments

The authors thank all the patients and physicians who participated in this study and Lieve Roets (LR) for her help in analysing the data.

References

View Abstract

Footnotes

  • Funding This study was supported by the Dutch Cancer Society (grant number KUN2007-03736).

  • Competing interests None.

  • Ethics approval The study was approved by the Research Ethics Committee at the Radboud University Nijmegen Medical Centre.

  • Provenance and peer review Not commissioned; externally peer reviewed.

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

Linked Articles

  • The concise argument
    D J C Wilkinson