The results described the nurses’ experiences of end-of-life care for residents with advanced dementia and pain, using three themes: communication challenges, relational challenges, and organisational challenges.
Communication challenges: assessing and relieving pain
a) Uncertainties when assessing pain
Many nurses found it challenging to assess pain. A common cause of uncertainty was when the cognitive impairment of dementia affected the person’s ability to verbally express if they experienced pain, which becomes a barrier to assess if pain medication has achieved an optimal level of pain relief. As one nurse said: “It is difficult, because most of them you cannot ask and get a clear answer from” (Nurse 11). The nurses thought that asking the residents with advanced dementia about their pain was the first step in pain assessment. When verbal communication was impossible, the nurses then focused on the interpretation of pain expressions: verbal expressions such as groaning and screams, and nonverbal expressions such as anxious behaviour and body language including facial expression. Several nurses found distinguishing pain from anxiety challenging: “It is really hard to assess pain and it is not easy to interpret whether it is about pain or anxiety” (Nurse 6). The similarity of expressions of pain and anxiety made the nurses feel uncertain.
Another communicational challenge that caused uncertainty was if the nurses lacked an earlier relationship with the residents with advanced dementia. That made pain assessment more difficult; for example, it is then impossible to compare current behaviour with past behaviour. As expressed by one nurse:
It felt tough because I didn´t know her from before...I couldn´t know if she had behaved like this before and that made it difficult. It helps so much if you have been taking care of the person for a while. (Nurse 10)
As lack of verbal communication was the primary reason for difficulties with pain assessment, several nurses emphasized the importance of communication skills and suggested that professional experience developed their abilities:
It demands skill to be able to assess whether a person with dementia is in pain ...you need to be really good at communication to sort this out...and this is something you have to learn through practice. (Nurse 5)
Most of the nurses used the Abbey Pain Scale assessment tool. However, some of the nurses did not use any assessment tools at all, believing that the available tools were inadequate, or that there were no guidelines at all. Instead, these nurses assessed pain by intuition.
b) Uncertainties when administering pain relief
Similarly, these nurses used an intuitive approach to decide the morphine dosage. This situation made it hard to achieve the correct balance between optimal pain control and optimal safety.
Safety is an issue because the most commonly used pharmacological treatment is subcutaneous morphine by injection. The nurses found it difficult to achieve the right dosage balance, avoiding doses that were too small for adequate pain relief and those that were so generous that respiratory depression resulted. As one nurse said:
Then one is a bit careful as morphine is a problem, i.e. it affects the respiratory centre … One does not want to sedate someone, despite having reached the end of life – you try to give just the required pain relief... (Nurse 6)
Thus, the nurses tried to find the dose that made the person peaceful and pain-free and felt satisfaction when they succeeded. As one nurse described it: “It’s really difficult to find a balance, to find the exact dose ... it is very positive seeing a person relaxing and not expressing pain” (Nurse 7). Despite worries about respiratory depression, several nurses believed it was better to administer morphine generously and preferable to give a bit too much rather than too little: “Well, yes, my point of view is that it is important to give something, and rather a bit too much than too little” (Nurse 11).
The difficulty of distinguishing pain from expressions of anxiety made several nurses adopt the strategy of combining morphine injections with midazolam injections for anxiety. As one nurse expressed it:
I noticed I had to relieve both pain and anxiety and he was so tense before, and after injections of morphine and midazolam he got so relaxed; they go hand in hand, pain and anxiety...it is not unusual that we combine medications for pain and anxiety. (Nurse 8)
Relational challenges: the influence of relatives
Mostly, relatives were perceived as a positive factor when caring for the dying person with advanced dementia, but they could sometimes negatively influence the administration of analgesics. Several nurses viewed relatives as significant resources in pain assessment, as relatives were often familiar with the earlier behaviour of the residents with advanced dementia and could interpret their behaviour for the nurses. One nurse said that a grandchild had been “really alert when she sat beside her grandmother’s bed; she immediately signalled to us when she saw signs of pain” (Nurse 1). The presence of relatives beside these residents with advanced dementia is important in itself, and they were usually called in by the nurses when they were approaching death.
Family members sometimes asked for an ongoing relationship with the healthcare staff, so they could actively influence and help with the care. At other times relatives could pose a challenge; this could happen, for example, when the person was administered analgesics. The relatives could be uncertain about or even afraid of morphine, and “the atmosphere in the room can change immediately when morphine injections are about to be administered” (Nurse 10). If relatives believe that their next-of-kin is not adequately relieved of pain, nurses often comply with their wishes for more pain medication:
Relatives often want the person to receive a lot of analgesics; of course, they don’t want them to suffer, and sometimes you listen to them, and sometimes you give an injection maybe more for the sake of calming down the relatives a little, to satisfy them, to make them feel at ease. (Nurse 9)
In some cases, relatives reportedly insisted on sending the person to the hospital because they thought that they were not adequately relieved of their pain. In other cases, relatives at the bedside asked the nurse to give as little morphine as possible, either because they were afraid that the drug could provoke the person’s death, or because they feared that the person could become addicted. Relatives’ attitudes toward morphine were often mentioned as the most complicated issue related to pain medication. This often caused stress or, as one nurse put it: “It’s a pressure, to be surrounded by questioning relatives” (Nurse 5). The nurses thought that the whole process of administering morphine could be strongly facilitated if they communicated closely with the relatives, exchanged information with them, and gave them good reasons for administering morphine.
a) Time constraints
Several challenges at an organisational level were mentioned by nurses as barriers to the provision of good quality, person-centred palliative care for those with advanced dementia. Several nurses emphasised the importance of being readily available in order to relieve the pain effectively. This can be crucial, as having nurses present “can relieve pain that comes from anxiety and loneliness” (Nurse 6). If residents with advanced dementia are left alone, they can feel lonely, which can create or increase physical and psychosocial pain. As one nurse expressed it:
Many things are important when it comes to pain, not least the psychological part. If a person feels exposed and feels like no one is there and no one cares about them, then I think they will feel more pain. (Nurse 9)
Many nurses reported that understaffing, limited time and heavy workloads made it difficult to provide adequate care and attend properly to residents with advanced dementia. The nurses wanted healthcare personnel to stay with the dying person when relatives were not present. However, sometimes the workplace did not permit additional healthcare personnel because of economic barriers, causing the person with dementia to die alone and in pain. This made the nurses feel powerless and helpless: “It is miserable to know that a dying person is alone and has nobody present ... because staff presence is insufficient” (Nurse 6). Their heavy workloads often prevented nurses from staying with the person who was dying:
We nurses are so few that we don´t have the time to sit and hold someone´s hand and try to comfort them ... most of the time we are sitting down documenting [the work]. I hardly find time to be among the residents. (Nurse 7)
Time constraints were commonly described as a significant barrier to the nurses being readily available to persons with advanced dementia. This was commonly lamented: “If I could wish for something, it would be more staff and more resources” (Nurse 13).
b) Lack of knowledge and competence
Another organisational challenge often mentioned by nurses was the apparent lack of professional competence and ability to apply a palliative care approach according to the philosophy of palliative care. All healthcare personnel were seen as necessary by nurses but sometimes when healthcare personnel lacked sufficient competence (such as sensitive awareness or an appropriate personal attitude) to handle the complex palliative care demands, it could become challenging. As one nurse said:
I have seen that persons with dementia can be more or less calm according to which staff are working… If there are anxious staff working, so to speak, if they talk loud, if they are stressed or something, then the person with dementia can also become worried and experience more pain… Meeting people with dementia is an art that is so important – to calm them and treat them with respect. (Nurse 9)
The nursing homes in this study were staffed by physicians who did not spend the majority of their practice caring for persons with dementia. The physicians often stated that there was no maximum morphine dose, but that it was important to start with a small dose and then titrate it until the person was comfortable. Many nurses in this study were responsible for determining the amount and frequency of morphine administration, even though no nurses had specialist training:
…Most often doctors prescribe no upper limit for the total administered dose, which means that I as a nurse have the greatest responsibility here when it comes to pain relief at the end of life. (Nurse 13)
Some nurses felt that this was a challenge and that the responsibility for morphine became greater during palliative care, with increased demands on the nurse's knowledge and competence.
Lastly, the nurses mentioned that they often co-operated with healthcare personnel and that they found this very important as those personnel often cared more directly for the person with dementia and therefore were better able to perceive their pain. On the other hand, healthcare personnel often lacked essential knowledge or experience relating to pain management:
“Lack of knowledge is one reason for it not working so well with healthcare personnel ... knowledge improves everything and provides the prerequisites.” (Nurse 12)
Some nurses experienced difficulties with stand-in or temporary healthcare personnel as they did not know the person with advanced dementia and were unaware of their baseline behaviour. This increased the risk of missing signs of pain and not reporting them to the nurses, as one nurse described:
“When I entered the room, I noticed the person was really in pain, and I questioned the healthcare personnel: why haven't you said something to me?” (Nurse 9)