NCRI 2013

Variations in terminal sedation practices across the UK, Netherlands and Belgium

Dr Jane Seymour - Nottingham University, UK

The unbiased study is the UK, Belgium, Netherlands Sedation Study. It’s an unusual study, perhaps, for most cancer researchers or palliative care researchers in that it’s a big qualitative study. So what we were trying to do is to gain an insight by talking to physicians, nurses and bereaved relatives into the way in which palliative sedation or terminal sedation is used to relieve suffering in the dying phase of cancer patients. We developed some inclusion criteria for patients who had died of cancer and what we did was we asked senior clinicians to identify patients over the age of eighteen who had had refractory symptoms, so symptoms that can’t be controlled by regular medical treatments, and for whom sedation was necessary to control those symptoms in the dying phase. We did the study in three different settings; we did it in hospices or expert palliative care units attached to hospitals in the Netherlands, the home setting and in hospitals. We completed 84 patient-centred case studies; we interviewed 57 physicians, 73 nurses and about 30 relatives, I’m not sure of the exact number.

We talked to the physicians and nurses about the way in which they had used the sedation, why they used it, what their intentions were in using the sedation, whether the sedation had been effective in relieving the patient’s symptoms, whether they placed emphasis on gathering the patient’s wishes about sedation, the ways in which they talked to the relatives and we also tried to gather their general views about the use of sedation in palliative care. What we found was that contrary to some of the existing research, which is based on survey data, so the surveys have tended to ask clinicians to report on cases of palliative sedation using a very, very operationalized definition of palliative sedation, we found that actually practices reported quite differently across the three countries. So in the UK there was no actual decision to sedate somebody reported, rather there was a kind of trickle effect so sedation was started and then perhaps it might be gradually increased in proportion to symptoms but there was very rarely a decision taken to sedate somebody now. In contrast, in Belgium and the Netherlands there was a very clear decision to sedate somebody at a particular moment in time and sometimes there would also be a kind of farewell scene, if you like, before the sedation was started, a very, very different practice to the UK. What we also saw was, in the UK, an overwhelming attempt to try to minimise the amount of sedation that was given and to distance it from any possibility that hastening death was occurring. In Belgium and the Netherlands, again a slightly different picture, sometimes we saw a couple of cases in Belgium where it was acknowledged that hastening death was a possibility or, in fact, the sedation was used as an alternative to euthanasia. So extremely different. We also saw different values placed on consciousness so in the UK there was an attempt to keep patients as lightly sedated as possible; in Belgium there was more often an attempt to deepen the sedation in response to patients requests to be sleepy or to be taken out of suffering. This didn’t happen in Belgium where patients had lost capacity, then the sedation was seen as a medical decision and the sedation was perhaps more lightly applied.

There are limitations to what we did because it was qualitative data so it’s not statistically representative but we did see different patterns in terms of the way practice was described across the three countries.

What are the legal implications country to country?

The legal set-up is very different and also what we’ve realised is that cultural values towards things like, for example, consciousness are very different too. So there is no suggestion that there was any wrongdoing going on, as far as we can ascertain, but clearly the legal situation towards legalisation of euthanasia shapes practice to some extent.

Does the UK have anything to learn from other countries?

What we did see was a much more explicit emphasis on gathering the views of patients about this type of treatment, sometimes at a fairly early stage, so before the treatment became necessary in Belgium and the Netherlands. What that meant was it was perhaps easier for it to be discussed when it became necessary whereas we didn’t have any reports of it being possible to discuss this issue with patients in the UK with the exception of, perhaps, hospice care. There there were, on occasions, some reports of consultants discussing treatment options before they came into the frame. But this is extremely challenging for clinicians to do, I think.

Does the UK need to look at policy reform?

Not necessarily, no, but I think it’s an area of practice that perhaps needs more investigation and we need to understand more about the challenges of clinical practice at the bedside.