Demographic data

Table 1 lists the demographic data of the 18 participating nurses. Of the participants, 14 were women and four men. The mean age was 46 years. Of the nurses, two were specialists in palliative nursing care.

Four main themes of ethical challenges regarding thirst in palliative care emerged (Fig. 1).

Fig. 1

The four main themes in ethical challenges regarding thirst in palliative care

Harmful infusions interfere with peaceful dying

In this main theme, the following subthemes are included: Infusions becomes a burden to the patient; Patients peaceful dying vs. family needs and cultural values; and Nursing experience does not count when deciding about infusions. Nurses described how the most important thing to them was that they did not want to harm the vulnerable patient when he or she was dying; they wanted to give the patient peace during the dying process. Thirst was not a frequent topic of discussion in the teams’ day-to-day work. When it did come up, the focus tended to be on intravenous fluids at the end of life.

Infusions become a burden to the patient

Most nurses experienced that intravenous infusions did more harm than good to the patient at the end of life, and that they did not quench thirst. Nurses believed that the dying person’s body could only handle a limited amount of fluid. If too much fluid was administered, there was a risk of pulmonary oedema, which the nurses feared, as they did not want to harm the patient by causing breathing difficulties. Instead, their priority was to ensure that the patient could experience a peaceful last period with relieved symptoms. In addition, the procedure of inserting an intravenous line was considered a burden for the patient.

This fear of causing a pulmonary oedema. That you are doing something wrong, that you are causing an increasing, more troublesome symptom than being thirsty. I:2.

Some nurses had experienced that subcutaneous infusions were administered to patients at the end of life to quench thirst. They argued that even this infusion, which was initially considered less invasive, also caused harm to the patient by causing redness, swelling and pain locally at the injection site, which the nurses felt caused the patient distress. The nurses questioned the benefit of such an infusion.

The family members were worried that he would die of thirst // then the doctors prescribed a (subcutaneous) drip // we thought it was an unpleasant pain that was inflicted on our patient, because you could see, often, the arm swelling or // yes, that it became red, it became irritated. I:17.

Patients peaceful dying vs. family needs and cultural values

Nurses described that the most common reason why infusions were given to patients at the end of life was the wishes of family members. The encounters with persons from different cultures, i.e. from different countries, religions, occupations and health care cultures could cause ethical challenges for them, as they did not share the same goal regarding how end of life care should be carried out and how to quench thirst, as some family members from these cultures were more prone to request infusions.

Nurses described that most family members, regardless of which culture they came from, were worried about the patient drinking, as they wanted him or her to live a little longer, and had a fear that the patient would die of thirst. Sometimes this led to the prescription of, as the nurses put it, a “compassion drip”, i.e. an infusion that was given to make family members feel safe, even though nurses believed that the patient did not need it. Nurses claimed that they had to balance the best interests of the patient with the needs of the family, and they wanted to secure the patients a peaceful dying process.

Sometimes we talked about a compassion drip because the family members feel that the patient is suffering from thirst // to reduce the suffering of the family members // … an ethical dilemma actually, in that we as healthcare professionals may see that a drip in this situation can worsen the patient’s condition. I:6.

Instead, some nurses felt that an infusion often prolonged the dying process and the suffering of the patient while also sending contradictory signals to family members that there was a possibility of prolonging the patient’s life, when this was not the case. They had experienced how family members could find it difficult to accept when it was time to discontinue an infusion that the patient had been dependent on for a long time, as they saw a decision about the infusion as a choice between life and death.

It is usually sensitive for a patient who has lived with a nutritional drip for a couple of months and has not been able to take in any other food and then you take it away; it can be associated with life and…and death. I:13.

For the nurses it was obvious that the provision of infusion should not start when patients were at the end of life. However, they explained that continued hydration was of great importance to many family members in non-Western cultures to enable them to have faith and hope that a miracle could happen.

It’s important in some cultures that you have it (IVs) so that you can be ready in case there is a miracle and then you have to have food and water, so there are things like that to take into account as well. I:2.

Nurses described that in some non-Western cultures, the family members tried to feed or provide liquids to the dying patient in order to relieve thirst, even if the patient refused to drink. They did not respect the patient’s wishes but continued to give them fluids in order to save life, which made nurses feel frustrated as they felt that the patient could not die in peace.

It can be a bit difficult with perhaps relatives and even staff sometimes, who try to think it is a good thing, and you may try to push fluids into the patient even though they do not want to them. I:9.

Another culture could also be where family members of the dying patient work in acute health care, where this culture is used to treat and keep patients alive. This could also be demanding for the nurses, as they had to explain to the family members that the patient was dying and that different kinds of medical intervention would not help him/her anymore, but would instead cause harm.

Not so long ago we had a man whose niece worked in emergency care. The man was no longer contactable, he was wheezing and had interruptions in breathing … The niece took it up with the patient’s doctor … and he prescribed an infusion … I:8.

The nurses explained that they provided information to the family members that the infusion was no longer useful and would not quench their thirst; but was a burden to the patient. This information could help the family members to understand.

I was thinking that some people want you to connect the drip…um, but…then we usually explain that giving a drip does not favour the patient’s sense of thirst…that it does more harm than good to… I:11.

Nursing experience does not count when deciding about infusions

Nurses described how the team was divided in discussions about end-of-life infusions, with physicians being the ultimate decision makers. The nurses explained that physicians with less experience of palliative care found it difficult to refrain from infusions and listened more to family members than to the nurses, which made the nurses feel frustrated that their knowledge came second. They felt that their experience was not important, even though they wanted to protect the patient. Some nurses had also refused to provide an intravenous infusion in fear of causing more suffering to the patient.

A colleague and I went in (to the patient) and judged that this… We do not do this; we do not carry out this prescription. Instead, we gave feedback to the doctor and described this patient’s situation. In addition, he, in turn, had to call the family members and say that this… this will not be good if we give this infusion. I:8.

Conflict between tradition and personal experience

The nurses described how their own experience and knowledge could be in conflict with the tradition of working with the symptom of thirst in palliative care. Nurses recounted that they relied on a traditional knowledge used in all palliative care, which emphasised that thirst did not occur at the end of life and that the body could not absorb fluids at the end of life. Instead, the fluids were deposited in other parts of the body such as the lungs and legs in the form of oedema. The nurses were accustomed to telling family members that patients were not thirsty, while at the same time doubting whether this was really the case. They themselves felt that the patient could suffer from thirst but that a strong practise in palliative care stated that the patient’s experience of thirst decreased at the end of life and that oral care was a sufficient measure to relieve thirst. This made it difficult for nurses to discuss the symptom of thirst within the team and they felt that the patient’s suffering might not be optimally alleviated.

What we (in palliative care) say is that the patient is usually not bothered by thirst at the end of life. You don’t get hungry and you don’t get thirsty….we can certainly sense from time to time that patients are bothered by thirst. I:2.

What is the right intervention to quench thirst?

Several nurses felt that oral care was the only option to alleviate the experience of thirst in patients at the end of life. It was therefore a very important measure for symptom relief. An ethical challenge arose when it was necessary to consider the benefit versus the suffering of oral care, as the patient could sometimes experience it as very unpleasant, which the nurses felt was a difficult consideration. They did not want to take away the patient’s autonomy while wishing to carry out oral care to moisturise the mouth.

Some patients who, even when they are not conscious, show, very clearly, strong discomfort from having someone who … yes, but moistens the oral cavity // then it becomes a small consideration // is it okay enough to skip this discomfort, or what is the greatest discomfort? It is very difficult if they cannot speak for themselves // What creates the most suffering? Not getting oral care or getting it done? I:14.

There were also times when neither oral care nor infusions helped the patient who expressed strong thirst, which made the nurses feel unsatisfied, as these were the only tools they had. Then the nurses had to think outside the box and find new ways to quench the thirst, even if it meant taking time away from other patients.

Yes, she (the patient) said she was thirsty, and we had a very hard time… because she rather threw up water … afterwards, we tried to sit there, just teaspoon by teaspoon. If you think a bit like after a stomach flu and so on when you just have to get the body to accept and retain some fluid. I:16.

Some nurses differentiated between patients with different diagnoses, where patients with heart failure being the group they saw suffering most from thirst. The nurses described that it was a great suffering for these patients because they were thirsty but were not allowed to drink and quench their thirst due to fluid restrictions. This made the nurses feel frustrated, as the usual nursing advice in palliative care was not enough, such as sucking on ice cubes or drinking sips of water.

Maybe then, I think it’s someone who has heart failure who has a diuretic and who feels a great need that they want to drink but they are not allowed to drink. I:10.

Some nurses described that most patients at the end of life were heavily medicated and therefore assumed that they did not feel thirsty. However, it was difficult to determine whether it was right or wrong to give the patient such powerful drugs to mask other symptoms such as thirst.

It’s a balancing act to find, should we just relieve, is there a cause that we can fix or should we just relieve in general and then I think with Morphine and Midazolam // that you calm // not sedate but kind of use those drugs also to remove symptoms like, like thirst. // that we, as I said, have a symptom that we only remove by giving Morphine and Midazolam…so are we doing the right thing? I:16.

Lack of standard procedures, competence and interest among team members

The nurses described that they felt that other health care professionals did not have knowledge or interest in whether the patients were thirsty. This led to the patient receiving poorer care, which the nurses found frustrating and an ethical challenge, as they did not want to see the patient suffer.

That is the only problem in thirst that I see, an incredible amount of carelessness from the home care staff (municipality). We cannot give water often, the home care staff is there 6–8 times a day except for us who maybe are there max 2 times. Despite the fact that we write very clear plans, they do not often follow them and that is the biggest problem. I:1.

Some nurses expressed that they themselves and other staff did not ask the patient if they were thirsty, which made them feel guilty and wonder if they had missed something. Nurses could also perceive oral care as a low priority, as they felt that many lacked interest in this even within their own organisation.

The lack of communication and forming common goals was perceived as ethically problematic. When the nurses described different ethical challenges around thirst, they described a situation where there is no standard procedure that they work in accordance with, which they found frustrating.

Unfortunately, we are different people working, we have different goals in front of us, and we work differently. We have no, clear standardisation, which we all follow. This is a problem. I:1.