Relieving suffering at the end of life: Practitioners’ perspectives on palliative sedation from three European countries

doi:10.1016/j.socscimed.2006.11.030

Social Science & Medicine

Volume 64, Issue 8, April 2007, Pages 1679-1691

https://doi.org/10.1016/j.socscimed.2006.11.030 Get rights and content

Abstract

This paper reports findings from visits to palliative care settings and research units in the UK, Belgium and the Netherlands. The aim was to learn about clinicians’ (both nurses and doctors) and academic researchers’ understandings and experiences of palliative sedation for managing suffering at the end of life, and their views regarding its clinical, ethical and social implications. The project was linked to two larger studies of technologies used in palliative care. Eleven doctors, 14 nurses and 10 researchers took part in informal interviews. Relevant reports and papers from the academic, clinical and popular press were also collected from the three countries. The study took place in a context in which attention has been drawn towards palliative sedation by the legalisation of euthanasia in the Netherlands and Belgium, and by the re-examination of the legal position on assisted dying in the UK. In this context, palliative sedation has been posited by some as an alternative path of action. We report respondents’ views under four headings: understanding and responding to suffering; the relationship between palliative sedation and euthanasia; palliative sedation and artificial hydration; and risks and uncertainties in the clinician-patient/family relationship. We conclude that the three countries can learn from one another about the difficult issues involved in giving compassionate care to those who are suffering immediately before death. Future research should be directed at enabling dialogue between countries: this has already been shown to open the door to the development of improved palliative care and to enhance respect for the different values and histories in each.

Introduction

Modern dying has some particular features that can make caring for dying people difficult. Most notably, technologies instituted since the Second World War in the developed world have made the diagnosis of dying difficult and the management of the transition from life to death fraught with ethical and legal problems. Questions about how to manage the dying process are now matters of intense clinical and societal debate, alerting us to how death is both a socially organised and profoundly physical transition (Turner, 1996) and related to beliefs and values at an individual, social and societal level. One contested practice is that of ‘palliative sedation’ which has become a much debated approach to the management of refractory symptoms at the end of life over the last 15 years (Ventafridda, Ripamonti, DeConno, Tamburini, & Cassileth, 1990). Published reports of the practice can be found from the early 1960s (Neder, Derbes, Carpenter, & Ziskind, 1963). Contemporary debates focus on how its use relates to euthanasia, issues of informed or advance consent, its role in ‘death with dignity’ and its relationship to the withholding or withdrawing of life prolonging medical treatments, particularly artificial feeding and hydration (Deliens et al., 2000). In Northern Europe, interest in the practice and whether its use provides a possible ‘alternative’ to euthanasia has been heightened in the wake of changes in the laws surrounding euthanasia in Belgium and the Netherlands since 2002 (Onwuteaka-Philipsen et al., 2005).

This paper discusses issues emerging from a study in which the authors (one with a sociological and nursing background, two with an ethics background) made a series of visits to palliative care settings and research units in the UK, Belgium and the Netherlands to learn about clinicians’ (both nurses and doctors) and academic researchers’ understandings and experiences of palliative sedation for managing suffering at the end of life and their views regarding its clinical, ethical and social implications. The project was linked to two larger studies of technologies used in palliative care, and had the purpose of providing comparative data to aid the evaluation of technologies in end of life care. While we do not claim to provide a representative account of the issues associated with palliative sedation in the three countries, we hope that by presenting this impression of the concerns of a selected group of practitioners and researchers in palliative care, and discussing them critically, we can provide insights into some important factors at play in this difficult area.

Section snippets

The wider context of end of life care

Since the late 1950s, Northern European countries have found different ways of meeting the needs of their dying persons. The organisation and delivery of end of life care in each country is predicated on a variety of clinical, ethical and socio-cultural assumptions which fundamentally influence the nature of the experiences of care and of dying for very ill people and their professional and family caregivers. Examples of such assumptions relate to cultural views about the ‘good’ or ‘natural’

Palliative sedation

Some dying people experience ‘refractory symptoms’ unresponsive to conventional therapies (Cherny & Portenoy, 1994; Quill & Byock, 2000). In such circumstances, sedation may be used to engender deep sleep until death occurs. This practice is variously known as ‘terminal’ or ‘palliative’ sedation, and is called palliative sedation here (Broeckaert, 2000; Broeckaert, 2002; Broeckaert & Núñez-Olarte, 2002). A review of clinical studies internationally show that delirium, agitation and extreme

Methods

The authors conducted informal interviews with clinicians and academic researchers working in the field of palliative care about palliative sedation. We will use the shorthand term of ‘stakeholders’ to describe our respondents. This was done in the UK, the Netherlands and Belgium, with one week spent in each country towards the end of 2003. The authors made use of their networks of contacts to develop a purposive list of ‘stakeholders’ to visit. Each person was invited to participate by letter,

Understanding and responding to suffering: views from the UK

The UK respondents who were clinicians felt that as palliative care specialists they had to deal with the consequences of the paradoxical and potentially contradictory cultural meanings associated with the methods used to relieve suffering, i.e. that while it is perceived that it is a primary duty of medicine to relieve suffering, the necessary actions required can be interpreted as attempts to hasten death. It was perceived that these perceptions create a barrier to the development of any

Discussion

That dying people should be free of pain and other intolerable symptoms has been identified as ‘a medical and moral imperative’ (Cherny & Portenoy, 1994, p. 31); the pain free, humanly managed death is a key element in late modern understandings of the ‘good death’ (Pool, 2004). Other elements of the late modern good death focus on questions of how to ‘give back’ control to the dying person and ensure that the care they receive during dying is in accordance with their wishes and preferences (

Conclusion

Palliative sedation is a little known and poorly understood practice for the control of suffering at the end of life, but one which is commonly used by clinicians across Europe to achieve the pain free, humanly managed death that features so strongly in our collective understandings of the good death. Our exploratory study focused on understanding the perspectives and experiences of selected palliative care practitioners and researchers from three European countries in relation to the practice

Acknowledgements

This study was funded as an exchange fellowship in comparative and evaluative analysis, to add value to two larger studies funded under the ESRC Innovative Health Technologies Programme, grant numbers: L218252055 and L218252047. We thank the ESRC for providing this opportunity and to the Universities of Sheffield, Nijmegen and Leuven for hosting the visits undertaken. Special thanks are due to the many people that we met for their time and hospitality, and for their subsequent comments on the

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Palliative sedation and potential role of opioid in French palliative care units in 2012
2016, Medecine Palliative
Les débats sur l’utilisation de la sédation en situation palliative alimentent, depuis les années 1990, la réflexion des équipes des structures spécifiques de soins palliatifs. Depuis 2009, la Société française d’accompagnement et de soins palliatifs (Sfap) en France et l’European Association for Palliative Care (EAPC) en Europe ont élaboré des recommandations de bonnes pratiques qui donnent le cadre de la réalisation de la sédation en situation palliative avancée ou terminale pour symptômes réfractaires et/ou complications à risque vital immédiat. La molécule de choix reconnue pour induire cette sédation est le midazolam. Cependant, certaines équipes évoquent la possibilité d’utiliser et/ou d’associer d’autres molécules et notamment un opioïde dans certaines situations cliniques.
Une étude descriptive par questionnaire a été réalisée auprès des médecins des 118 unités de soins palliatifs de France en 2012, interrogeant les pratiques de sédation et la place potentielle d’un opioïde dans la sédation en situation palliative.
Le taux de réponse au questionnaire a été de 45 % : 53 médecins ont participé pour 49 unités de soins palliatifs. Tous les répondeurs pratiquaient des sédations en situation palliative ; 25 répondeurs pratiquaient des sédations en utilisant le midazolam seul, 12 répondeurs ne pratiquaient de sédations qu’en associant un opioïde au midazolam et 16 répondeurs réalisaient des sédations utilisant les deux pratiques. La douleur réfractaire et la dyspnée semblaient être plus fréquemment retenues comme indication de l’association avec un opioïde. Le midazolam seul semblait être significativement associé aux sédations palliatives contre l’hémorragie massive cataclysmique et l’agitation/confusion. Par ailleurs, la surveillance par l’échelle de Rudkin était très majoritaire.
Devant ces résultats, il est nécessaire de réaliser des études complémentaires afin d’affiner la place potentielle de l’opioïde dans la réalisation de la sédation.
Debates on the use of sedation in palliative care are fuelling the reflection of teams involved in the care of patients at end of life since the 1990s. Since 2009, European and French societies for palliative care (EAPC and SFAP) have developed best practice guidelines that provide the framework for achieving sedation in advanced or terminal palliative situation for refractory symptoms and/or complications with immediate vital risk. The molecule of choice known to induce sedation is midazolam. However, some teams have raised the possibility of using other drugs in certain clinical situations, including opioids.
A descriptive study using a survey was conducted among 118 palliative care physicians in France in 2012, exploring the practice of sedation and the potential role of opioid sedation in palliative situation.
The response rate to the questionnaire was 45%: 53 physicians in 49 palliative care units returned the survey. All respondents practiced sedation in palliative situation; 25 using midazolam alone, 12 using a combination of opioid and midazolam, and 16 carried out sedation using either midazolam alone or associated to an opioid. The association of midazolam with an opioid appeared to be more frequently used for refractory pain and dyspnea. The use of morphine and oxycodone seemed to be the most preferred association of drugs; intravenous and subcutaneous routes were the most used, the administration was more likely done via a titration than via a bolus. Rudkin scale was mostly used for monitoring.
Given these results, it seems necessary to perform additional studies to refine the potential role of opioids for sedation.
Continuous sedation until death. A French way for the end-of-life care?
2016, Presse Medicale
La sédation continue jusqu’à la mort (SCJM) est une pratique qui se développe rapidement dans de nombreux pays, apparaissant comme plus acceptable que l’euthanasie et le suicide médicalement assisté car plus proche de la « mort naturelle ». Le parlement français vient d’adopter une loi stipulant que l’on procède à une SCJM à la demande du patient dans un certain nombre de circonstances, notamment en cas de maladie incurable avec une évolution proche de la phase terminale et des souffrances réfractaires aux traitements. La France a adopté ainsi une position internationale unique pour les soins de fin de vie. Cependant de multiples problèmes éthiques soulevés par la SCJM, dans laquelle une sorte de mort psychosociale précède la mort biologique, ont été soulevés dans la littérature. La légitimité de la SCJM, surtout si la sédation est profonde et non proportionnelle au degré de souffrance, ou en cas de détresse purement existentielle, a été contestée. La primauté donnée à l’autonomie est discutable pour les patients vulnérables, qui relèvent surtout d’une solidarité sociale. Le principe du double effet est remplacé de fait dans la SCJM par une co-intention de soulager la souffrance et en même temps de hâter éventuellement la mort, surtout en cas d’arrêt de la nutrition artificielle et de l’hydratation, situant ainsi la SCJM dans une zone grise entre les soins palliatifs et l’euthanasie.
Continuous sedation until death (CSUD) is a practice which has developed recently in several countries, appearing more acceptable than euthanasia and medically assisted suicide, since more close to a “natural death”. The French parliament has just adopted a law which stipulates CSUD on request of the patient in a definite number of circumstances, especially in incurable diseases near to the terminal stage with suffering refractory to treatments. Thus France has adopted a unique international position for the end-of-life care. However several ethical problems raised by CSUD, which corresponds to a psycho-social death preceding the biological one, have been raised in the literature. The legitimacy of CSUD, especially if sedation is deep and not proportional to the degree of suffering, or if it is performed in case of a purely existential distress, is a matter of discussion. The primacy allocated to autonomy is questionable for the more vulnerable patients, who deserve mainly a social solidarity. The double-effect principle is replaced actually in CSUD by a co-intention both to relieve suffering and meanwhile eventually to hasten death, especially when stopping nutrition and hydration. CSUD is thus located in a grey zone between palliative care and euthanasia.
Descriptions by general practitioners and nurses of their collaboration in continuous sedation until death at home: In-depth qualitative interviews in three European countries
2015, Journal of Pain and Symptom Management
Citation Excerpt :
Continuous sedation until death (from here onward referred to as sedation) is often used as a last resort option for relieving intolerable refractory (i.e., untreatable) symptoms of terminally ill patients in which the patient's consciousness is lowered until the time of death.1–4 Previous international research has shown that sedation is commonly used in different countries and that systematic differences occur in its practice among countries.5–8 Guidelines on sedation were developed in The Netherlands in 2005 and in Belgium in 2010.2,3
One palliative care approach that is increasingly being used at home for relieving intolerable suffering in terminally ill patients is continuous sedation until death. Its provision requires a multidisciplinary team approach, with adequate collaboration and communication. However, it is unknown how general practitioners (GPs) and home care nurses experience being involved in the use of sedation at home.
To present case-based GP and nurse descriptions of their collaboration, roles, and responsibilities during the process of continuous sedation until death at home in Belgium, The Netherlands, and the U.K.
We held in-depth qualitative interviews with 25 GPs and 26 nurses closely involved in the care of 29 adult cancer patients who received continuous sedation until death at home.
We found that, in Belgium and The Netherlands, it was the GP who typically made the final decision to use sedation, whereas in the U.K., it was predominantly the nurse who both encouraged the GP to prescribe anticipatory medication and decided when to use the prescription. Nurses in the three countries reported that they commonly perform and monitor sedation in the absence of the GP, which they reported to experience as “emotionally burdensome.”
We found variety among the countries studied regarding the decision making and provision of continuous sedation until death at home. These differences, among others, may be the result of different organizational contexts in the three countries such as the use of anticipatory medication in the U.K.
The complexity of nurses' attitudes and practice of sedation at the end of life: A systematic literature review
2014, Journal of Pain and Symptom Management
Citation Excerpt :
However, studies that explore their attitudes toward and practice of this intervention of last resort are relatively scarce. Past research that explored this aspect of end-of-life care examined nurses alongside physicians.3–5 Otherwise, they reported the practice of PS within a wider context of medical end-of-life decisions,6–8 or simply focused on specific aspects of the practice.9,10
Sedation is administered to some palliative care patients at the end of their life. Nurses play an important role in this practice.
To systematically review the evidence on nurses' attitudes and practice of end-of-life sedation.
We searched eight electronic databases, four key palliative care journals, and reference lists for empirical studies published in English, between 1990 and 2012, on nurses and their attitudes toward and practice of sedation until a patient's death. A total of 10 studies met the inclusion criteria.
Data were generated from 7515 nurses in four main settings (specialized palliative care unit, home, nursing home, and acute hospital) from seven countries (Belgium, Canada, Japan, The Netherlands, Norway, U.K., and U.S.). On average, the quality of the evidence was good; hence, we analyzed all selected studies. Based on the findings from a previous review, we categorized the emerging themes into: 1) important factors leading to the patient receiving palliative sedation (PS), 2) nurses' attitudes toward PS, and 3) nurses' experience of PS at the end of a patient's life. In general, nurses had a positive but cautious attitude toward the practice of PS. Most saw it as a last resort treatment for relieving suffering and refractory symptoms, and its practice was often influenced by their level of education, expertise, and the roles they played per setting.
Most nurses administered sedation until death only within the given circumstances because of the anticipatory benefits in controlling refractory symptoms and suffering. Some of them experienced burdens during PS delivery; these could be supported by operational guidelines and task-related training.
The experiences of relatives with the practice of palliative sedation: A systematic review
2012, Journal of Pain and Symptom Management
Guidelines about palliative sedation typically include recommendations to protect the well-being of relatives.
The aim of this study was to systematically review evidence on the experiences of relatives with the practice of palliative sedation.
PubMed, Embase, Web of Science, PsycINFO, and CINAHL were searched for empirical studies on relatives' experiences with palliative sedation. We investigated relatives' involvement in the decision-making and sedation processes, whether they received adequate information and support, and relatives' emotions.
Of the 564 studies identified, 39 were included. The studies (30 quantitative, six qualitative, and three mixed methods) were conducted in 16 countries; three studies were based on relatives' reports, 26 on physicians' and nurses' proxy reports, seven on medical records, and three combined different sources. The 39 studies yielded a combined total of 8791 respondents or studied cases. Caregivers involved relatives in the decision making in 69%–100% of all cases (19 quantitative studies), and in 60%–100% of all cases, relatives were reported to have received adequate information (five quantitative studies). Only two quantitative studies reported on relatives' involvement in the provision of sedation. Despite the fact that the majority of relatives were reported to be comfortable with the use of palliative sedation (seven quantitative studies, four qualitative studies), several studies found that relatives were distressed by the use of sedation (five quantitative studies, five qualitative studies). No studies reported specifically about the support provided to the relatives.
Relatives' experiences with palliative sedation are mainly studied from the perspective of proxies, mostly professional caregivers. The majority of relatives seems to be comfortable with the use of palliative sedation; however, they may experience substantial distress by the use of sedation.
The practice of continuous deep sedation until death in Flanders (Belgium), the Netherlands, and the U.K.: A comparative study
2012, Journal of Pain and Symptom Management
Citation Excerpt :
In the U.K., the high rate may be a result of the fact that such sedation is perceived to be the only legal “last resort” option for a physician treating a terminal patient with refractory symptoms. An exploratory study in three countries—BE, NL, and the U.K.—also suggests that, especially for U.K. respondents, the patient’s clinical condition and context and environment of care—in other words, whether people have the knowledge and expertise to deal with the patient’s symptoms—will drive the use of sedation.49 Our study adds new information about the nature of variation in the prevalence of continuous deep sedation until death in Flanders (BE), NL, and the U.K.
Existing empirical evidence shows that continuous deep sedation until death is given in about 15% of all deaths in Flanders, Belgium (BE), 8% in The Netherlands (NL), and 17% in the U.K.
This study compares characteristics of continuous deep sedation to explain these varying frequencies.
In Flanders, BE (2007) and NL (2005), death certificate studies were conducted. Questionnaires about continuous deep sedation and other decisions were sent to the certifying physicians of each death from a stratified sample (Flanders, BE: n = 6927; NL: n = 6860). In the U.K. in 2007–2008, questionnaires were sent to 8857 randomly sampled physicians asking them about the last death attended.
The total number of deaths studied was 11,704 of which 1517 involved continuous deep sedation. In Dutch hospitals, continuous deep sedation was significantly less often provided (11%) compared with hospitals in Flanders, BE (20%) and the U.K. (17%). In U.K. home settings, continuous deep sedation was more common (19%) than in Flanders, BE (10%) or NL (8%). In NL in both settings, continuous deep sedation more often involved benzodiazepines and lasted less than 24 hours. Physicians in Flanders combined continuous deep sedation with a decision to provide physician-assisted death more often. Overall, men, younger patients, and patients with malignancies were more likely to receive continuous deep sedation, although this was not always significant within each country.
Differences in the prevalence of continuous deep sedation appear to reflect complex legal, cultural, and organizational factors more than differences in patients’ characteristics or clinical profiles. Further in-depth studies should explore whether these differences also reflect differences between countries in the quality of end-of-life care.

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Relieving suffering at the end of life: Practitioners’ perspectives on palliative sedation from three European countries

Abstract

Introduction

Section snippets

The wider context of end of life care

Palliative sedation

Methods

Understanding and responding to suffering: views from the UK

Discussion

Conclusion

Acknowledgements

Social Science & Medicine

The Lancet

Studies in History and Philosophy of Biological and Biomedical Sciences

Journal of Pain & Symptom Management

Journal of Pain and Symptom Management

Diseases of the Chest

Social Science & Medicine

Social Science and Medicine

The Lancet Oncology

Euthanasia in the low countries: Comparative reflections on the Belgian and Dutch Euthanasia Act

Principles of biomedical ethics

Slow euthanasia

Journal of Palliative Care

Palliative sedation defined or when and why terminal sedation is not euthanasia

Journal of Pain and Symptom Management

Belgium: Towards a legal recognition of Euthanasia

European Journal of Health Law

Palliative sedation. Ethical aspects

Palliative care and euthanasia: Belgian and Dutch perspectives

Ethical Perspectives

Palliative care and euthanasia Belgian and Dutch perspectives

Sedation in palliative care. Facts and concepts

Sedation in the management of refractory symptoms: Guidelines for evaluation and treatment

Journal of Palliative Care

Between hope and acceptance: the medicalisation of dying

BMJ

Reflections on palliative care

Transition in end of life care: Hospice and related developments in Eastern Europe and Central Asia

The Research Act: A theoretical introduction to social research

The loneliness of the dying

A multicentre international study of sedation for uncontrolled symptoms in terminally ill patients

Palliative Medicine

The House of Lords Select Committee on the ‘Assisted Dying for the Terminally Ill Bill’: Implications for specialist palliative care

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Foreseeing is not necessarily the same as intending

BMJ

The discovery of grounded theory: Strategies for qualitative research