Palliative sedation challenging the professional competency of health care providers and staff: a qualitative focus group and personal written narrative study

Abstract

BackgroundDespite recent advances in palliative medicine, sedating a terminally ill patient is regarded as an indispensable treatment to manage unbearable suffering. With the prospect of widespread use of palliative sedation, the feelings and representations of health care providers and staff (carers) regarding sedation must be carefully explored if we are to gain a better understanding of its impact and potential pitfalls. The objective of the study was to provide a comprehensive description of the opinions of carers about the use of sedation practices in palliative care units (PCU), which have become a focus of public attention following changes in legislation.MethodsData were collected using a qualitative study involving multi-professional focus groups with health care providers and staff as well as personal narratives written by physicians and paramedical staff. A total of 35 medical and paramedical providers volunteered to participate in focus group discussions in three Palliative Care Units in two French hospitals and to write personal narratives.ResultsHealth care provider and staff opinions had to do with their professional stance and competencies when using midazolam and practicing sedation in palliative care. They expressed uncertainty regarding three aspects of the comprehensive care: biomedical rigour of diagnosis and therapeutics, quality of the patient/provider relationship and care to be provided. Focusing on the sedative effect of midazolam and continuous sedation until death, the interviewed health care providers examined the basics of their professional competency as well as the key role played by the health care team in terms of providing support and minimizing workplace suffering. Nurses were subject to the greatest misgivings about their work when they were called upon to sedate patients.ConclusionsThe uncertainty experienced by the carers with regard to the medical, psychosocial and ethical justification for sedation is a source of psychological burden and moral distress, and it has proved to be a major source of suffering in the workplace. Lastly, the study shows the uncertainty can have the positive effect of prompting the care team to devise ways to deal with it.

Level of knowledge, emotional impact and perception about the role of nursing professionals concerning palliative sedation

“…This therapy is used in palliative care as a strategy to provide relief from refractory symptoms, such as delirium, dyspnoea, psychological suffering and pain, among others (Altisent et al., ; De Graeff & Dean, ; Maltoni, Scarpi, & Nanni, ; Schildmann & Schildmann, ). Although its administration is more common every day and there are several guidelines available, it is still a subject of much clinical, legal and ethical debate in different contexts (Abarshi et al., ; Leboul et al., ; Melia, ; Raus et al., ; Verkerk, van Wijlick, Legemaate, & de Graeff, ). Most guidelines on PS and studies regarding its use derive from developed countries (Abarshi et al., ; Schildmann & Schildmann, ) and data regarding guidelines, practices and perceptions of healthcare providers in developing regions (e.g., Latin America) are very scarce (Moyano, Zambrano, Ceballos, Santacruz, & Guerrero, ; Pelluchon, ; Soriano, Lima, Batista, Febles, & Morales, ; Spineli, Kurashima, & De Gutiérrez, ).…”

“…Healthcare providers express concerns and experiences of emotional and moral distress when performing PS, which may be related to skills, availability of clinical guidelines, work organisation aspects and uncertainties and debates surrounding PS (Leboul et al., ; Raus et al., ). Indeed, nurses have been found to be particularly vulnerable to concerns regarding the practice of PS (Abarshi et al., ; Leboul et al., ), even before graduating from nursing programmes (Edo‐Gual, Tomás‐Sábado, Bardallo‐Porras, & Monforte‐Royo, ). Findings from a study conducted with Norwegian nurses indicate that administering PS can impact on their emotional, physical, social and spiritual well‐being (Venke Gran & Miller, ).…”

Palliative sedation and medical assistance in dying: Distinctly different or simply semantics?

“…However, if the intended action is not actually resulting in the relief of suffering, is the action still considered good? His claim is based on his own experiences in providing deep sedation to pediatric patients undergoing procedures where a "nontrivial minority" are able to recall conversations that happened while they were sedated and also report having felt "pain, fear or anxiety without the ability to express their symptoms" during the procedure while under moderate or deep sedation (Kon, 2011, p. 41 (Leboul et al, 2017;Twycross, 2019). For example, Kon (2011) asserts that "it is unquestionable that some patients receiving moderate or deep sedation also suffer and are unable to express their suffering to providers" (p. 41).…”

Treatment, Palliative Care or Euthanasia? Comparing End of Life Issues in Veterinary and Human

“…Palliative sedation therapy is one potential solution to providing relief from these refractory symptoms' [34] In a recent study from France, health care providers found that in many cases midazolam failed to provide relief from some refractory symptoms. Also deep sedation broke down the patient/carer relationship [35].…”