Between September 2019 and December 2020, we interviewed 41 HCPs. Characteristics of the HCPs are listed in Table 2. The interviews lasted between 30 and 93 min, with a mean duration of 59 min. The time between the most recent case of CDS of the HCPs and the interview varied from the same day to months, and was in one case more than a year.

Table 2 Respondents’ characteristics

During the coding of the data we identified three key themes: 1) the course and performance of CDS in clinical practice.2) indications to start CDS, and 3) the decision-making process.

The course and performance of CDS in clinical practice

Nearly all HCPs stated that they were familiar with the RDMA guideline on CDS and stated that they used the guideline as a reference when providing CDS. Midazolam was the medication mostly used as a sedative, administered by repeated injections or by continuous infusions.

HCPs stated that it is not always evident how the symptoms of the patient will evolve over time. Some stated that over time they increasingly used intermittent sedation, a so-called time-out, sometimes resulting in CDS. These HCPs experienced that they did not always have sufficient knowledge of the background of patients, for example during evening and night shifts. The reason to start with intermittent sedation for these HCPs was to relieve time pressure and to create space to evaluate the patient’s symptoms.

General practitioner: “What hopefully increasingly will be used is intermittent sedation, when there is chaos and pressure, which increases the suffering of the patient. I think it can be a good solution to choose for a single dose in these situations.”

HCPs mentioned several factors they experienced as supportive in the decision-making and performance of CDS. Factors mentioned were the possibility to discuss options for supportive care and the need to start CDS with a colleague, recurrent team meetings where the use of palliative care and CDS could be discussed, increased experience and knowledge concerning palliative care and CDS, and the RDMA guideline that provides guidance in the decision-making and performance on CDS.

Some HCPs experienced that the use of CDS not always successfully relieved the suffering of a dying patient despite the fact that they increased the dosage of the sedative according the guideline.

Nurse: “And my last consult, there was a general practitioner who started sedation which did not succeed, it was a young man, who during sedation got up constantly and screamed for help and that he was going to die. There were young kids walking around the bed. Well, some sedations just don’t succeed.”

Indications to start CDS

Reporting on their most recent case, the majority of HCPs stated that the indication to start CDS was an accumulation of multiple symptoms leading to a refractory state.

Nursing home physician: “it was a combination of different factors. There was not just one single symptom, so that you could say, we increase the doses of pain killers. It was not only the pain, it was the total despondency of not getting better anymore. The patient said, I am exhausted, turning in bed already costs me so much energy. I don’t want this anymore, I can’t take this anymore. So it was a combination of pain, which is a physical symptom, exhaustion, and existential suffering.”

Common physical symptoms mentioned were pain, dyspnoea, restlessness, delirium, fatigue, and nausea. Many HCPs stated that non-physical symptoms also played a role, including fear of dying, difficulties with accepting death and loss of dignity. Especially HCPs working at patients’ homes, stated that over the years their interpretation of refractory suffering had broadened, and that non-physical symptoms more often play a role in the decision-making. For medical specialists working in hospitals, this extension of indications was less evident.

Many HCPs stated that their knowledge and experience with providing CDS increased over the years. Some stated that they use CDS more often because they recognize refractory symptoms better.

General practitioner: “In the past, when my knowledge was not sufficient enough, I remember that I was muddling along. I remember a case of a man with a delirium with motorically restlessness, and where I realized too late: what could I do? Haloperidol is working, but not on these symptoms. And very late I realized that I just needed to add a benzodiazepine. So, looking back on this case, which is more than six years ago, I let him crawl in his bed too long.”

Others stated that they use CDS less often because they had experienced that CDS cannot successfully relieve suffering at the end of life in all cases.

The decision-making process

The imminent death of a patient is often discussed by HCPs with patients and their relatives in advance care planning (ACP) conversations. HCPs in our study differed in their opinion on whether CDS should routinely be discussed in these ACP conversations. Some stated that they do not always discuss CDS with patients and their relatives, certainly not when it is not a relevant option yet. Others stated that they routinely discuss the option of CDS with their patients and their relatives. The HCPs who stated that they routinely discuss the option of CDS in advance with patients, did not experience that due to such conversations they were more inclined to start CDS. These HCPs emphasized the importance of framing the decision to start CDS according the RDMA guideline, namely as a medical decision where medical criteria need to be met.

General practitioner: “What occasionally happens, is that people have certain expectations of CDS. That people say that they have discussed it with their general practitioner and that they don’t choose euthanasia, but sedation instead. I then explain that it doesn’t work that way, that CDS is not something you can choose, that it is something I decide about when I am their attending physician during the dying process, when I think that it is not possible to provide comfort by other palliative treatment options, and that it is not life-shortening. By giving more information I try to manage their expectations.”

While most HCPs stated that they consider the decision to start CDS a medical decision, they also emphasized that it is important to involve patients and relatives in the decision-making. The extent to which patients and relatives are involved varied, from taking the initiative to start CDS to providing consent for starting CDS.

Paramedic : “Eventually the patient said that he couldn’t bear it anymore. This is it, he said. The general practitioner visited the patient on a daily basis, so he just waited for the patient to be at this point. We knew that this patient would die soon. So at the moment that the patient said that he couldn’t bear the pain anymore, and was also disorientated at times as he was also suffering from a terminal delirium, he was well able to indicate that he had reached his limit.”

A few HCPs stated that they had experienced a situation in which the patient or the relatives asked to start CDS while the respondent was convinced that CDS was not an option (yet), based on the criteria of the RDMA guideline.

Nursing home physician: “Once I made the mistake that I admitted a patient who had already had a conversation about euthanasia and CDS with his general practitioner. I thought, well, this is good advance care planning of the general practitioner. The patient already received palliative care, but there was absolutely no indication for CDS yet. I gave the patient a leaflet about CDS, so that if there were questions we could discuss these. Whereupon 2 days later his wife came to me and asked: when will you start?”

Most HCPs in our study felt that over the years suffering at the end of life is less tolerated by patients, their relatives, and sometimes also by other HCPs. Most HCPs experienced that they received more requests to relieve the suffering of dying patients using CDS, and a greater need for information among patients and relatives. This was sometimes experienced as pressure. Influence of the media, where dying is sometimes portrayed as a painless and almost beautiful event, was seen as contributing to the diminished tolerance of suffering.

A large minority of respondents in our study mentioned the following quote from relatives of dying patients:

“you wouldn’t even let a dog suffer like this would you?”.

HCPs mentioned that the involvement of many different HCPs in the care of a patient makes it difficult to manage expectations at the end of life. Pressuring factors in the decision-making reported by general practitioners occurred during evening- and nightshifts, when they also attend patients they do not know: lack of time, limited knowledge of the situation of the patient, and limited possibility to consult an expert were mentioned as causing overall pressure.

General practitioner: “At night there isn’t anyone to consult. There is no palliative care consultant you can call, there is no general practitioner specialized in palliative care you can call, there is no colleague available, and the family is pressuring you to start CDS.”

Furthermore, most HCPs in our study stated that for patients and relatives differences between euthanasia and CDS are often unclear. HCPs experienced that they need to explain more often what the differences between CDS and euthanasia are, and in which situations CDS and euthanasia can be used. In some cases, euthanasia had been discussed in an earlier phase, but was no longer considered an option by the HCP, because the situation of the patient declined too rapidly. In these cases HCPs also experienced pressure to start CDS.

Nurse: “He constantly mixed it (euthanasia and CDS) up, and said: I don’t care how you name it, as long as I get my injection and I don’t wake up tomorrow.”