The analyses of the interviews revealed three key themes: (1) relatives as participants, (2) relatives as supporters and (3) relatives as troublemakers (see Figure 1). The first theme was conceived of as the grouping that was most relevant to the study topic, whereas the second and third themes were conceptualised as theoretical extreme sub-types (32). Empirically, these extreme types were rarely encountered in their pure form, but on a spectrum (see Figure 1). The results are reported in the context of each thematic heading, supported by representative quotations.
Relatives as participants in emergency situations
Nurses perceived no uniform role played by relatives, but a wide variety.
Regarding the relatives, they are sometimes really different. (Nurse, I10: 150)
Nevertheless, in both the interview and the focus group data, relatives of nursing home residents were considered important players in the planning, communication and decision making processes within emergency situations. When a nursing home takes on a new resident, nurses often involve relatives in planning for potential emergencies:
Some residents don’t have advance directives. We are lucky to have a physician here who does advance care planning together with relatives and our nurses. Then, relatives have to decide: What would be the best option for my relative? This is a great support for us, because there we write down what to do to, if… (Nurse, I33:15)
Irrespective of whether emergency planning has occurred, in emergency situations, nurses usually contact relatives. Relatives generally have an agreement in place with the nursing home as to the times and situations in which they wish to be informed (e.g. some do not want to be called at night).
Usually relatives and general practitioners cooperate with us and want to be informed about emergencies. Then we describe the situation and they participate in decision making. (Nurse, FG5:266)
In urgent and severe emergencies, the involvement of relatives is postponed in order to prioritise contact with emergency services. In these situations, nursing staff make decisions on behalf of the resident and inform relatives only afterwards.
Then I actually call the emergency service first and do inform the relatives afterwards. I don’t need a relative’s decision here. Emergency is emergency. (Nurse, FG5:372)
In the event of a resident’s limited capacity to consent (due to, e.g., neurodegenerative disease), nurses must involve relatives (or the resident’s proxy) in all decision making.
Regarding the population of our residents here, most of them are not able to decide in their own. Then it’s up to the relatives, the patient’s proxy and us to decide what to do (Nurse, FG6:85)
Relatives as active supporters
Nurses perceive relatives as active supporters when they agree with the nurses’ recommendations and are engaged in emergency management.
We talk with the resident and with the relatives concurrently and we come to an agreement. In most of the cases, the relatives say: ‘Ok, if you assess the situation like you do, then we agree to have the situation monitored in the nursing home’. (Nurse, FG1:70)
In these cases, relatives trust in the nurses’ competence and experience and follow their recommendations. Therefore, it is beneficial for nurses to prepare relatives for potential emergency situations and build trusting relationships with them.
If a resident does not agree with the necessary emergency treatment (e.g. transfer to hospital) and the nurses feel incapable of following the resident’s wish, they may involve relatives in the decision. Relatives sometimes have significant influence over residents and are able to convince them to follow the nurses’ recommendations.
If a resident refuses to go to hospital and I think this is necessary, then I try to speak with the relatives. Mostly they follow my advice and discuss the topic with the resident once more. They sometimes have a higher impact than me. (Nurse, I26:39-43)
If nurses deem hospital transfer necessary but the resident refuses, they may ask family members to accompany the emergency transport. This strategy can help to decrease the barrier for residents to go to the hospital and facilitate emergency management.
If someone refuses emergency transport by all means, we sometimes call relatives to support us. This is of course not ideal, because then emergency service has to wait, and now, in times of corona[virus] this is currently not possible. But in the past, we called them, they came here and accompanied their relative to the hospital. This was much, much easier. (Nurse, I04: 155)
On the other hand, relatives can also protect residents from receiving treatment that opposes their wishes. Even if emergency services have been called and an emergency physician is on site, nurses may defer to relatives’ decisions on whether to proceed with a hospital transfer.
When we have a 96-year-old resident who is in a very bad condition, and death is forthcoming, but there was no […] advance care planning, and emergency service wants to bring him to the hospital, then we call the relatives and say: ‘Here, please say that he refuses to go to hospital’. And usually emergency service follows the relatives’ wish. (Nurse, I04: 153)
At times, nurses may try to involve a general practitioner in the emergency situation, either by asking them to come to the nursing home or by requesting medical advice. In these situations, relatives may call the general practitioner to emphasise the urgency of the situation.
Sometimes it makes sense if relatives once again call the general practitioner. They emphasise the urgency and pressurise the general practitioner to a prompt answer. (Nurse, FG6: 141)
Relatives as troublemakers
Nursing staff perceive relatives as a challenge when they do not follow the nurses’ advice or the residents’ wishes, and when they are overstrained by the situation. In these situations, disagreements are likely to arise between nurses and relatives and, in some instances, relatives may pressure nurses to call an ambulance.
Mostly, we see clearly that there is no emergency service necessary, but relatives insist on a hospital transfer. (Nurse, FG1:30]
In other situations, relatives want the resident to stay in the nursing home, even if nursing staff do not consider this is a viable option.
We had the case that a resident fell on her head, and she really had a concussion. For us it was clear that she needed a hospital transfer but the relatives asked us to keep her here. And even the physician shook his head [about the relatives’ request]. (Nurse, FG3: 45)
In the event that differing opinions about emergency management exist between nurses and relatives, nurses are sometimes influenced by a threat of legal consequences.
There is also the fear of our nursing home regarding legal consequences. If you do not react immediately then you are in trouble with the relatives. (Nurse, I16: 85)
A complicated situation arises when a resident’s will is known and clearly written in an advance directive, but relatives cannot accept it. On the one hand, nurses feel obliged to respect the resident’s wishes; but on the other hand, they fear the consequences of doing so.
I have a resident who has an advance directive, and everything is clear. But yet, I have relatives who cannot let him go: ‘Father mustn’t die!’ This is complicated, because they do not accept the resident’s will. I get in trouble, because if I follow the patient’s decree, then afterwards the relatives will accuse me of being responsible for his death. This is difficult. (Nurse, I10: 147-149)
Although nurses emphasise the importance of emergency planning, they also acknowledge that emergencies are highly challenging for relatives. Sometimes, relatives’ experiences of feeling overburdened leads them to suddenly change their treatment plans.
We frequently have relatives who cannot let the resident go. Actually, everything is clear and written down [about how to proceed in emergency situations], but when emergency situations occur they steer us in the opposite direction and say: ‘Please, once more!’ This is really challenging for us. (Nurse, I27: 114:120)