Early and late signs that precede dying among older persons in nursing homes: the multidisciplinary team’s perspective

The average age of the Swedish population is increasing, and it has been calculated that in 2030 one person in four will be 65 or older [1, 2]. Meanwhile, the Swedish “ageing in place” ideology, whereby older persons should be able to live at home for as long as possible, has led to there being a decreasing number of beds in nursing homes. This has in turn led to a situation where it is only the most frail older persons in our society today that are living in nursing homes [3]. Thus nursing home residents in Sweden are old, frail and usually have multiple chronic diseases, making the nursing home a major arena for the provision of palliative care. However, it has been found that palliative care has not been available for older persons dying from multiple morbidities or “old age” to the same extent as for younger persons, perhaps because it can be more difficult to identify when the final stage of life begins [4–6].

The majority of the older persons living in nursing homes also die there [5, 7, 8]. Dying from old age or a chronic disease is often a prolonged suffering with increasingly impaired function, and it is difficult to identify deterioration that signals a short survival or death [9]. Recognizing that a person is dying is often a difficult and complex process [5, 10] but identification of physical, psychological and other changes may help the staff to enable the older person to participate in planning the care in accordance with their own preferences and values and to prepare themselves and their families [11].

Several studies emphasize that information and preparation for the older person can contribute to less fear, fewer misunderstandings and the exploration of wishes with regard to the process of dying [11–13]. However, studies [6, 11] have shown that older persons are insufficiently informed about the imminence of death, for which reason few of them have the opportunity to express their wishes concerning care for the last phase of life. A qualitative study of chronically ill persons in nursing homes [14] points to the importance of a palliative care approach at an early stage of dying at nursing homes: there is likely to be a better quality of life when the older person’s multi-dimensional needs can be satisfied. The importance of a palliative care approach at an early stage of dying, together with early planning, is confirmed by other studies [15–17].

The complexity of the older person’s multi-morbidity may lead to difficulty in identifying when there is a need to renegotiate the goal of care from a general sense to a palliative care approach [4, 6, 18]. Because of the difficulties involved in identifying signs that precede dying in the older person, staff often delay adequate measures to meet palliative care needs [15, 16]. There are a number of limitations to providing the best possible high-quality care in nursing homes, e.g. lack of a multidisciplinary approach and lack of support from physicians [19, 20]. Collaboration in a multidisciplinary team is essential and constitutes a resource when it comes to identifying signs preceding dying in older persons, because of the multi-dimensional skills [12].

There have been a few studies focusing on identifying dying in older persons in nursing homes [21–23]. Brandt et al. [21] focused on physicians’ experiences of dying among older persons with life expectancy of 6 weeks or less. The results indicated that it was difficult for the physicians to predict dying among the older persons who did not have cancer. However, a study [23] focusing on assistant nurses’ experiences has shown that assistant nurses are able to identify both manifest and subtle signs of dying in general. Another study [22] that also focused on assistant nurses’ experiences but also registered nurses’, showed that these professions were able to identify several signs that precede dying, for example that the older person starts falling and stops taking medicines. To the best of our knowledge, however, no study has been done which distinguishes between early and late signs of dying, nor any which focuses on the multidisciplinary team’s collective experiences of early and late signs. Consequently, the aim of the present study was to explore the experiences of early and late signs preceding dying in older persons in nursing homes from the multidisciplinary team’s perspective. In this study, the multidisciplinary team involves members of several professions working daily with the older person.

This study shows that the multidisciplinary teams working with older persons in nursing homes found it difficult to identify early signs that precede dying. Whilst at the beginning of the interviews the staff found it hard to imagine what such signs might be, they later — with the help of the discussions in the focus group — started to get closer to several signs which could be considered early. One reason why the staff found it hard to identify early signs might be that they were not used to seeing dying as a process which extends over a time-period. The early signs were described as subtle and were sometimes seen as both signs that precede dying and signs of something else than dying such as a disease. Porock and Oliver [22] raise one possible reason why early signs preceding dying get little attention at the nursing homes: talking about death is taboo among the staff, for which reason an increasing awareness that the older person is going to die can be hard to handle. An earlier study by Sahlberg-Blom and colleagues [23] on assistant nurses’ experiences of signs of dying found signs similar to those we ourselves found. The signs presented in their study cover physical and psychosocial changes in older persons and include both subtle signs of dying such as feeling a desire to die and manifest signs such as body changes, for example fatigue and difficulty in breathing. Another study [27] which explored how nursing home staff (nurses, assistant nurses and social workers) managed the transition from routine care to end-of-life care found that the staff discussed physical changes as a core aspect of the transition. In contrast to those results, the early signs identified in our study were both physical, psychological and social in nature, i.e. the person was seen as a whole. The reason for the differences in the results might be that the staff were of different professions and thus the groups had a multidimensional view of the older person.

One early sign mentioned by the staff was that the older person felt a greater need to go through their life from childhood to the present and talk about past experiences. One way to explain this result is by means of the theory of gerotranscendence developed by Tornstam [25, 27, 28]. This theory about the ageing process states that human progress is a life-long development that stretches into old age and finally results in a new understanding of life. One of the levels in gerotranscendence is the cosmic level, which includes the dimensions of time and space. Changes occur in the perception of time and space which can cause the border between present and past to become blurred and involve a return to and reinterpretation of childhood. With application of the theory of gerotranscendence the fact that the older person shows signs of wanting to withdraw from the outside world and of not caring about things to the same extent as before can be interpreted as a natural progression towards maturation and wisdom, instead of it as disengagement or apathetic behavior. Wadensten [29] claims that the theory of gerotranscendence can improve our knowledge of the transition into old age and provide a basis for staff’s discussion of how to provide optimum care for the older person and how to support ageing. If the staff at nursing homes had knowledge about gerotranscendence, it would increase their understanding of the older person’s needs, perhaps (to mention but one possible benefit) providing the initiative for more talks. Guidelines for nursing have been developed from the theory of gerotranscendence [30], and these could be used as a tool for the staff to support the older persons in their progress towards gerotranscendence. In addition an intervention has been made to introduce the guidelines to staff in nursing home, involving eight occasions with lectures and discussion in groups [31]. The results showed that many of the staff had a different view of the signs of gerotranscendence after the intervention and experienced them now as a normal part of ageing instead of as pathological.

A recurring early sign was resignation: the older person sometimes seemed to have given up and did not want to live any more. This resignation could appear in different forms among the older persons, e.g. withdrawal from social contexts, decreased appetite and lack of motivation. Montoya-Juarez and colleagues [32] state that persons use psychological defences to cope with the challenges that arise in the end-of-life. Resignation can be seen as one such defence and can be shown through negative feelings and thoughts which are given verbal expression. In addition, resignation can also include a feeling of acceptance which may provide a certain amount of calm before death occurs. Resignation and dejection have been raised in other contexts. In a study by Tollén, Fredriksson and Kamwendo [33] the older persons were still relatively independent, but when they started experiencing impaired function there arose feelings like emptiness, resignation and dejection. Even if they knew that they should try to engage in different activities, they did not take the initiative. Resignation can also be seen as a part of gerotranscendence [25, 27, 28]. According to the theory the fear of death has decreased and the older person can talk in greater depth about dying and express such feelings as that they do not want to live any more.

In contrast to the early signs that precede dying, late signs of dying were familiar. The staff had the knowledge concerning which signs to look for and they used it in everyday practice. It was clear from the interviews that dying was seen as a happening rather than as a process, meaning that it was restricted to the last days or weeks of the older person’s life. These results are in line with results obtained by Beck and colleagues [34] which showed that assistant nurses in nursing homes experience palliative care as lasting only for a short and limited time. The focus on late signs might be attributable to the fact these signs are obvious, i.e. they are familiar, clear and prominent in the last days or weeks. The late signs are also similar to those that have been described in the literature [21–23] and the staff are well aware of them. In contrast to the holistic view of the older person connected to early signs preceding dying, the participants mainly highlight the physical and psychological aspects of late signs. This is in line with earlier research [35, 36]. This might be explained by the fact that during the last week/days the older person is often bedridden and unconscious. However, in order to provide a holistic care and abide by the basic values of palliative care (presence, wholeness, knowledge and empathy), social and existential aspects also need to be taken into consideration [18]. Even though the older person is unconscious, the right to be treated with dignity remains, and it is regulated in the Swedish Health and Medical Services Act [37].

Today, person-centred care is applied in nursing homes [38–40]. However, an early preparation for end-of life seems to be lacking. Waldrop and colleagues [41] argue that all nursing home residents are admitted because of a medical crisis which has necessitated institutionalized long-term care and that this fact implies that all nursing home residents are to be considered as dying, although not necessarily imminently. Thus a palliative care approach could be put into place from the very start of a person’s residence at a nursing home, e.g. using advanced care planning. Advanced care planning is an early ongoing communication and decision-making process with the older person and their next of kin which addresses the approaching death. Studies show that advanced care planning can improve the quality of end-of-life care (EoLC) [42], increase the number of EoLC discussions and enhance concordance between patient preferences and provided care [43, 44]. However, a recent review highlights that implementation of advanced care planning in nursing homes requires the involvement and education of staff, including nurses, physicians and leaders [45].

There are some methodological issues that need to be discussed, first the recruitment process. We asked the unit managers of the nursing homes to ask the staff if there was anyone interested in participating in the study. This approach in recruitment can be seen in two ways. There can be a methodological problem with regard to volunteering because a request from the unit manager to participate in a study can be perceived as mandatory. However, Kreuger and Casey [24] indicate that a person may see it as a good thing to be chosen by the unit manager: the person feels honored and special, and participation is experienced as something positive. The unit managers included the staff who had a special interest in palliative care and those who thought the study seemed interesting. The researcher’s perception with regard to the focus groups was that everyone had decided for themselves whether they wanted to participate or not and that everyone was engaged and interested, which led to a comfortable climate during the interviews.

Another issue that needs attention is the representation in each focus group of different professions from the multidisciplinary teams at the nursing homes. The goal was that professions like assistant nurse, registered nurse, occupational therapist, physiotherapist, social worker and unit manager should participate in each interview, but it was not possible to obtain all professions for all groups. However, the results of this study can be seen as a whole, which could make the drop-out less likely to influence the results remarkably. One profession which was represented in all focus groups was that of assistant nurse. Studies [23, 34] show that the assistant nurses’ practical knowledge is of great importance for the multidisciplinary team. This was also evident in the interviews. In relation to this issue, one might question the inclusion of other professions in the study. The registered nurse and the assistant nurse are the ones who are working closest to the older person and might therefore be the ones with most knowledge of signs that precede dying. This is also evident in earlier studies [22, 23]. However, as the complex needs of frail older persons require diverse professionals to be able to offer a holistic care [13], the experience represented by the multi-professional team is of importance. One profession that is a natural part of the team but not included in our focus groups is that of the physician. The decision to exclude physicians was based on the fact that physicians in Swedish nursing homes are employed by another organization and only come as consultants, i.e. do not work daily with the older persons.

Within the focus groups most of the staff knew each other before the interviews, which might have affected the answers and the discussion. The staff felt calm and secure in the interviews because there were persons they know, which could have meant a more comfortable climate and a greater readiness to discuss sensitive matters. Reflecting our own experiences, Kreuger and Casey [24] argue that there must be a concern in focus group interviews to reach a balance whereby there is enough variation within the group at the same time as this variation is not such that some of the participants become silent because the other participants have greater education or experience. In the focus group interviews the moderator and the assistant moderator worked actively to ensure that all staff should be able to speak.

The study includes four nursing homes in two counties in four municipalities in southern Sweden, which can be seen as a narrow sample. However, in qualitative studies generalization is not the goal, which is instead to present results which can be transferred to similar contexts. Whether the results are transferable to another context is a question for the reader’s assessment [46].

The team working with the older person found it difficult to identify early signs that precede dying mainly because they did not see dying as a process but as a happening, restricted to the last weeks or days of the older person’s life. One early sign that the participants identified in different ways among the older persons was resignation, e.g. withdrawal from social contexts, lack of motivation and low mood. Another sign was that the older person developed a need to go through their life, from childhood to the present. Late signs that precede dying were familiar, observed by the staff in everyday practice. The team’s collective experience of early and late signs that precede dying constitutes new knowledge that has never been shown in the literature before. This knowledge can increase the understanding of when a palliative care approach needs to be in place at nursing homes. This approach is relevant to advanced care planning. It would prepare both the staff and the older person for dying and make it possible to conduct person-centered care. Knowledge of ageing, frailty and the dying process in older persons needs to be part of the staff training. Also joint discussions within the organization regarding the preparedness for palliative care might encourage the managers to facilitate the implementation of a palliative care approach in nursing homes.