Using continuous sedation until death for cancer patients: A qualitative interview study of physicians’ and nurses’ practice in three European countries
Abstract:Background:Extensive debate surrounds the practice of continuous sedation until death to control refractory symptoms in terminal cancer care. We examined reported practice of United Kingdom, Belgian and Dutch physicians and nurses.Methods:Qualitative case studies using interviews.Setting:Hospitals, the domestic home and hospices or palliative care units.Participants:In all, 57 Physicians and 73 nurses involved in the care of 84 cancer patients.Results:UK respondents reported a continuum of practice from the pr… Show more
“…They also reported considerable concerns about the use of morphine, and what has been described elsewhere as opioidphobia 29. As has been observed in research on palliative sedation, there seemed to be a strong need for participants to explain that they were not seeking to hasten death 30. There were advantages for those with healthcare experience in that they reported a more proactive and equal relationship with the primary care team and unsurprisingly had better access to information resources.…”
Objective To explore how bereaved family members recall managing end of life medications when delivering care to a patient dying at home in England.Design Qualitative study.
Setting Domestic homes in two contrasting areas in England.Participants 59 bereaved family carers who have delivered care to a patient who spent a minimum of two weeks at home prior to their death from cancer or other non-malignant condition. Cases were excluded if place of death was: hospice, nursing home or NHS hospital.Results Participants identified a number of important concerns about managing end of life medication for the dying person at home. Although some support with medications is provided by general practitioners and nurses in the community, family carers take primary responsibility for drug administration and storage. They reported anxiety about giving correct and timely dosages, and concerns about keeping the patient comfortable without overdosing them or risking shortening their lives. In particular they reported that certain analgesic medications, especially opioids, were considered to have a symbolic significance and increasing analgesia and the use of a syringe driver were associated with deterioration and 3 approaching death. Key barriers to managing end of life medications at home included: complex regimes; unwanted responsibility in deciding when to use 'as needed' medication; disagreements with professional staff and anxiety about medication errors, especially if perceived to have implications for survival.
ConclusionsFamily carers require more information about end of life drugs and their effects, support and training in managing medication for a dying person. Significant concerns were identified, and these need to be addressed if current UK policy to increase the number of patients dying at home is to be safely realised.Words: 276
“…They also reported considerable concerns about the use of morphine, and what has been described elsewhere as opioidphobia 29. As has been observed in research on palliative sedation, there seemed to be a strong need for participants to explain that they were not seeking to hasten death 30. There were advantages for those with healthcare experience in that they reported a more proactive and equal relationship with the primary care team and unsurprisingly had better access to information resources.…”
Objective To explore how bereaved family members recall managing end of life medications when delivering care to a patient dying at home in England.Design Qualitative study.
Setting Domestic homes in two contrasting areas in England.Participants 59 bereaved family carers who have delivered care to a patient who spent a minimum of two weeks at home prior to their death from cancer or other non-malignant condition. Cases were excluded if place of death was: hospice, nursing home or NHS hospital.Results Participants identified a number of important concerns about managing end of life medication for the dying person at home. Although some support with medications is provided by general practitioners and nurses in the community, family carers take primary responsibility for drug administration and storage. They reported anxiety about giving correct and timely dosages, and concerns about keeping the patient comfortable without overdosing them or risking shortening their lives. In particular they reported that certain analgesic medications, especially opioids, were considered to have a symbolic significance and increasing analgesia and the use of a syringe driver were associated with deterioration and 3 approaching death. Key barriers to managing end of life medications at home included: complex regimes; unwanted responsibility in deciding when to use 'as needed' medication; disagreements with professional staff and anxiety about medication errors, especially if perceived to have implications for survival.
ConclusionsFamily carers require more information about end of life drugs and their effects, support and training in managing medication for a dying person. Significant concerns were identified, and these need to be addressed if current UK policy to increase the number of patients dying at home is to be safely realised.Words: 276
“…In a qualitative study into continuous sedation in the UK, Belgium and The Netherlands, for example, not a single UK physician or nurse reported ever using the term 'continuous sedation' or a related term [14]. One UK nurse was quoted as saying: 'I don’t usually use the word ‘sedation’, I use the term ‘make him more comfortable and settled' ([14], p.52). These respondents clearly did not experience continuous sedation as a practice that differs from other forms of symptom control.…”
BackgroundContinuous deep sedation at the end of life is a practice that has been the topic of considerable ethical debate, for example surrounding its perceived similarity or dissimilarity with physician-assisted dying. The practice is generally considered to be legal as a form of symptom control, although this is mostly only assumed. France has passed an amendment to the Public Health Act that would grant certain terminally ill patients an explicit right to continuous deep sedation until they pass away. Such a framework would be unique in the world.DiscussionIn this paper we will highlight and reflect on four relevant aspects and shortcomings of the proposed bill. First, that the bill suggests that continuous deeps sedation should be considered as a sui generis practice. Second, that it requires that sedation should always be accompanied by the withholding of all artificial nutrition and hydration. In the most recently amended version of the legal proposal it is stated that life sustaining treatments are withheld unless the patient objects. Third, that the French bill would not require that the suffering for which continuous deep sedation is initiated is unbearable. Fourth, the question as to whether the proposal should be considered as a way to avoid having to decriminalise euthanasia and/or PAS or, on the contrary, as a veiled way to decriminalise these practices.SummaryThe French proposal to amend the Public Health Act to include a right to continuous deep sedation for some patients is a unique opportunity to clarify the legality of continuous deep sedation as an end-of-life practice. Moreover, it would recognize that the practice of continuous deep sedation raises ethical and legal issues that are different from those raised by symptom control on the one hand and assisted dying on the other hand. Nevertheless, there are still various issues of significant ethical concern in the French legislative proposal.
“…Available qualitative research indicates that the language on sedation can also significantly differ between countries [6,21]. Using key word analysis on full‐length interviews with Belgian, Dutch and UK doctors and nurses, it was possible to identify important differences between those countries based on linguistic differences.…”
Section: A Plethora Of Different Terms To Label the Practicementioning
confidence: 99%
“…Some medical professionals are adamant in denying an intention to shorten life or even an intention to sedate. A striking example is that of a UK doctor saying: Actually what we're aiming for is the kind of minimum amount of sedation needed to get symptoms under control … it may require regular medication along with extra doses and needing sort of quite, quite heavy doses of sedation, but, you know, the aim isn't to sedate the aim is to relieve symptoms … we try very hard to give the medication for the symptom relief with a recognised side‐effect that we're trying to minimize [6] (p. 4, emphasis added).…”
Section: A Plethora Of Different Definitionsmentioning
confidence: 99%
“…At the same time, other doctors are very clear that for them sedation does involve a clear intention to sedate. An example here is a Belgian general practitioner saying: ‘The aim of sedation is really to get someone fully sedated’ [6] (p. 6). Belgian doctors often report that they find it important and comforting to know that their deliberate action resulted in relief of suffering and a peaceful death for the patient.…”
Section: A Plethora Of Different Definitionsmentioning
Including value-laden elements in the very definition of a clinical practice runs the risk of pre-empting a proper normative debate about the practice. We explain why this is the case and why it is problematic, and we propose an alternative, descriptive, definition that seeks to avoid these problems.
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