Knowledge and views of thirst

Most spouses had not given that much attention to thirst, as they considered it something basic and natural for all humans. For spouses, drinking was closely associated with thirst. Nevertheless, when asking them more about their everyday life, they had some knowledge about thirst expressed in the subthemes: Assumptions about thirst; Patient’s preferences and aversions and Lack of external knowledge sharing creates distress.

Assumptions about thirst

Most spouses said that they had not given much thought to whether the ill person felt thirsty or not. However, they knew how to assess thirst, and they used different methods to assess it. In cases where the ill person could verbally communicate their needs, this meant that the spouse could know with certainty whether the person was thirsty. In other cases, respondents relied on their own or shared drinking habits when assessing the person’s thirst or comparing the person’s previous drinking habits. Thirst could also be assessed based on the patient’s behaviour and body language.

One way is to take the cup and hold it up to her mouth. //If she knocks it away or covers her mouth, she does not want water. Otherwise, I have not thought of anything. However, it must be pretty clear, when she is awake and sees the cup, and I hold it out and she pushes it away, then I know. I:14.

Back then, she could not communicate, as she was unconscious. A few days before she could point, and I brought her a drink, and she drank using the straw, like that, and then she swallowed it… and it was fine after a couple of sips. I can imagine that she was thirsty actually. However, she could not express it. I:17.

Some spouses were unsure whether the patient was thirsty or had a dry mouth. They assumed that they might have a dry mouth because they were taking medication that caused dry mouth as a side effect or had fungus in their mouth. However, most of them could not distinguish between these conditions with certainty, and they mixed them up.

If you do not drink, as you should, then you get a little dizzy. Therefore, in a way, when I think about thirst, I think a lot about dry mouth. I:3.

However, when she is thirsty, mostly it is because she is dry in the mouth. I:12.

Other spouses described that the patient had so many medicines to take every day, and therefore needed a large amount of fluids, resulting in that the spouses felt that thirst never occurred.

Patients’ preferences and aversions

The spouses explained that they had a good understanding of what the patient wanted to drink as well as what they did not like. Preferences varied greatly, but most mentioned that carbonated water or room-temperature or ice-cold water was the best drink to quench thirst. Milk, ice cream, tea and sweet soft drinks were also mentioned. Spouses also knew what the patient was unable to drink, for example, that the patient had an aversion to coffee, water, nutritional drinks or acidic drinks such as juice.

He takes a sip of water, or now that he has a craving, he wants Fanta all of a sudden. Yes, and then Coca-Cola or something like that, so he has to take a swallow so that it is something other than water. Otherwise, he wants cold water, so we have bottles in the refrigerator, small bottles of cold water and then we change. Therefore, he always has access to something, water. I:15.

The carbonated water gives her pain in her mouth. Although she tries anyway…like…the bubbles…uh, are unpleasant… it hurts a bit. Not so much that she screams aloud. No, it is just not nice. I:12.

She does not like nutritional drinks because they are far too sweet, so disgustingly sweet that she will not take them. I:6.

Lack of external knowledge sharing creates distress

The spouses had not received any information or knowledge from the health or community care services about thirst or how to quench it. The reason they gave for not seeking help themselves was that the question of thirst had not been on the agenda before. In addition, drinking was something basic that every human knew how to satisfy. As a substitute, they experimented with different liquids to determine which were easy to drink and good tasting for the ill person. However, they lacked knowledge on how to quench thirst and found it difficult to find something that truly satisfied the patient’s thirst, which was sometimes distressing.

I: Has anyone informed you about what you can do to quench thirst?

R: No, that has not been done. In addition, I do not know if, if it is in any way part of the illness, or the treatment, that it is, it is common to feel thirsty. I have not read or learned anything about that either, any information. I:11.

We do not truly have that much (knowledge), I think that the sweet stuff is not really that good, but then again, salt is not that good for the body either, but there is a middle way that we can find that is good. The cranberry juice that he drinks in the morning, it is not that sweet and… well it is not so easy to find something that is… I: 4.

Control of fluid intake provides vital information

When the spouses described their daily life, it was clear that some had a need to observe and record the patient’s fluid intake. Control and nagging about drinking more often leads to conflicts between the spouse and the patient. Two subthemes emerged: Observing and recording fluid intake and Controlling and exhorting leads to conflicts.

Observing and recording fluid intake

The spouses wanted to have control over the patients’ drinking habits. Some spouses had good control by keeping track of drinking. This was seen as preventive work, as drinking was a sign of vitality. Not drinking at all or very little broke the social norm of ”you ought to drink” and was sometimes described as odd.

YY drinks about… or uses two decilitres of milk in the morning for the porridge and then… the juice two decilitres now in the morning and… a glass of water two decilitres at lunch and then… afternoon coffee… a glass of juice two decilitres and then… two decilitres in the evening and then he is up to one litre. I:4.

He is so strange because he drinks almost nothing. Whenever we go out, like this, I usually bring some water or something like that. He has been drinking very little all his life. I:13.

Most spouses felt the need to control the volume of drinks the patient was consuming. To do this, some used daily fluid lists where all liquid intake was recorded, while others only ensured that the patient drank, regardless of the volume taken.

Yes, he gets what he wants to drink. That is how it is. At the same time, he should not drink more than, not more than one and a half litres a day so I keep statistics on how much he drinks so that we do not go over that and it, it’s fine. I:5.

Yes, but she has probably drunk approximately 6–7 dl in a day. It is not that much, but it is…well, it is a rough estimate. It could be a litre and it could be half a litre. I:14.

When spouses talked about their control of the patient’s thirst, they did so by describing the situation the patient had been in earlier in life and their disease journey and the current situation and how they observed that thirst needs could change depending on the state of health. Sometimes this observation provided the spouses with vital information; they processed the new information with the old information to determine the current state of health and what prognosis they could expect.

So truly, a noticeable change came about six months ago, when he was bad…at the end of the summer, beginning of the autumn. During… after a few months, he said to himself ”I do not understand why I am so thirsty”. He drank a lot of chocolate milk, just poured it down his throat… I:3.

However, she used to drink. Except for the last, well, the last three days, it has been bad. In addition, for a while before, when she was in the hospital, a few, a couple of times, she did not drink much, but then, since then, she’s been drinking quite a lot. I:14.

Controlling and exhorting leads to conflicts

The spouses reminded the patient to eat or drink more or less, which they described sometimes led to conflicts between them, as the patient may feel controlled by them. The spouse described that they wanted to do well, to help the relative feel better, but they still urged them to drink a sufficient amount.

Although he says he drinks often, I do not know, it is me who goes there with the drink, like this. However, I do not keep a count like that. He gets angry when I say that he has not drunk more than that…”Oh, you keep track of it too”, he says.//We have talked, but we usually end up fighting because he takes it as criticism because I nag him about not drinking enough. I:2.

… and I might reprimand him, think about that… because it is true that the heart has to work harder if he drinks more so that… well… but it usually works because then we go to that drinking list and read how much has been consumed and see what we have left. I:4.

Others had weighed the pros and cons and concluded that the controlling and exhorting had to end from their side, in favour of the ill one’s health and wellbeing and their relationship together.

Now, when I know that we have a limited amount of time, I have decided… because I can otherwise have a tendency to rather nag a little, and then I finally decided … because now, it does not really matter if my nagging gives us another month or two, because if I keep on nagging the relationship will not be good. So then you rather have to make your choices, then I simply do not say anything. I:17.

Being responsible for their drinking is a responsibility for life and death

When the patients’ health deteriorated, most of the spouses considered it their responsibility to provide fluids in order to help, care, and ensure quality of life. Some spouses did not want to think about thirst in the future, as this was not a problem ”yet”. Spouses where the patient was closer to death saw it as necessary to provide water or any other fluid to prolong life. Three subthemes were found: Helping and caring; Fluid intake in the future; and If you do not drink, you die of thirst.

Helping and caring

It was clear to spouses that they had to ensure that fluids were available, as they saw it as their responsibility. This was done out of concern for the patient so that they would not have to make the effort to go and get something to drink or feel thirsty. Despite a daily routine, they did not feel that they were sacrificing anything but were happy to help the ill person, as their care for them was greater than their own need for free time. Most of them automatically provided the ill person with fluids at home or, if they had to go somewhere, they made sure they had a bottle of drink with them.

Yes, he sits most of the time in his armchair in the room and watches TV and then… he calls sometimes ”can I have some water or can I have some juice”… I:5.

Then, we have water on the dresser, by the bed (laughter). Moreover, we both get up at night and then you take a sip of water after that, then you go back to sleep again. I:8.

It was not only the desire to prolong life that made spouses take responsibility for drinking. They also wanted to help and provide the patient with quality of life by giving them what they wanted to drink because these were the last times they would have together.

Yes, every day now we drink wine with the food. //before, I start cooking, then NN comes and says ”yes, today it is wine”. Yes, most of the time it is wine. In any case, he takes a glass of wine and then makes two sandwiches with caviar. He does that on his own. It is the most delicious thing in the whole day, I understand. For him! Then, he should have it! I:13.

Fluid intake in the future

The spouses were aware of the need for fluid intake for the patient, and some were worried about this in the future, as they had no or little knowledge of how the fluid would be provided if the patient could no longer drink on their own. Would thirsting to death be a possibility? Others felt that thirst was moderate and not something that spouses needed to think about at all. Some were aware of how fluid intake would end and said they were not worried ”yet”. Most spouses found it difficult to think about the future and chose to take one day at a time. This depended on the situation the patient was in and whether he/she had stopped eating food and taking nutritional drinks.

Then, you have to use the available methods. Yes, those methods, it is intravenous or just sucking on a swab or something. No, I have not thought about that, no, I hope that is a long way off. I:6.

I have only heard about people who are dying, who are about to die, that you…you, uh, moisten their lips. Because they are thirsty. That is the only thing I have heard about…about thirst//Also I, uh, I would rather not… I think that now we have a good, a good life. Why should I go and think about all the terrible things that are going to happen in advance? I:13.

If you do not drink, you die of thirst

When the patient was closer to death, spouses were more concerned about their fluid intake. Another reason for taking responsibility for providing the ill person with fluids was to ensure that they lived as long as possible, as fluids were associated with life and thirst to death. Some clearly expressed that food is something that humans can live without for a long time, but without fluids, humans soon die of thirst. Therefore, they felt a responsibility to help ensure that the ill person drank enough or, in the last days of life, moistened their mouth.

Well, the fluid supply is what is keeping her alive now. Because there is not much more to take out of the body, to get out of the body, it is just skin and bones.//Because we know that water is important. Because she has not eaten anything in a month. Nothing. Yes, but, food… you can live without it for 40 days. However, you cannot live without water for three or four days, yes. I:14.

Maybe it would be different if he was bedridden and I am at home taking care of him and he gets dry mouth and so on. Then, I will take more responsibility, go, and get some swabs, you know. I:17.