How Do You Know When an Old Person Is Dying
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Early on and belatedly signs that precede dying among older persons in nursing homes: the multidisciplinary team'due south perspective
BMC Elderliness volume 18, Commodity number:134 (2018) Cite this commodity
Abstract
Groundwork
Nursing home residents in Sweden are old, frail and usually have multiple morbidities which often make dying a prolonged suffering. It has been found that older persons at nursing homes receive far less palliative care than younger persons, partly considering it is difficult to identify when the final stage of life begins. The identification may help the staff to enable the older person and their families to participate in planning the care in accordance with their own preferences and values. With this in mind the aim was to explore the experiences of early and late signs preceding dying in older persons in nursing homes from the multidisciplinary team's perspective.
Methods
The focus grouping method was used to interview 20 health-care professionals on the basis of semi-structured questions. Four focus groups were conducted at iv nursing homes in two counties in southern Sweden. The groups included different professionals such equally banana nurses, registered nurses, occupational therapists, physiotherapists, social workers and unit managers. The analysis was conducted according to the focus grouping method developed by Kruger and Casey.
Results
The analysis revealed one major theme, from unawareness to obviousness, which illustrates that the participants experienced dying as a happening, not a process, and plant it difficult to identify early on signs. Even though it was a new mode of thinking, several suggestions of early signs were presented. The main category "Going into a bubble" illustrates early signs, which meant that the older person showed signs of wanting to withdraw from the outside world. The main category "The body begins to close downwards" illustrates late signs, which meant that the older person showed signs that indicate that the body starts to prepare for expiry.
Conclusions
This study conveys new knowledge concerning the multidisciplinary team's collective experience of early on and belatedly signs that precede dying. This knowledge can increase the understanding of when a palliative care approach needs to be in place at nursing homes. The apply of a palliative care arroyo in intendance planning requires consensus in the perception of the dying process of frail older persons.
Peer Review reports
Background
The average age of the Swedish population is increasing, and it has been calculated that in 2030 1 person in four will exist 65 or older [i, 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 existence a decreasing number of beds in nursing homes. This has in plough led to a situation where it is only the well-nigh frail older persons in our club today that are living in nursing homes [3]. Thus nursing home residents in Sweden are former, frail and unremarkably take multiple chronic diseases, making the nursing dwelling 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 aforementioned extent every bit for younger persons, maybe considering information technology can be more difficult to place when the final phase of life begins [4,five,6].
The majority of the older persons living in nursing homes as well dice there [five, seven, eight]. Dying from old historic period or a chronic disease is oftentimes a prolonged suffering with increasingly impaired office, and it is difficult to identify deterioration that signals a short survival or death [9]. Recognizing that a person is dying is frequently a difficult and complex procedure [5, 10] but identification of physical, psychological and other changes may help the staff to enable the older person to participate in planning the intendance in accordance with their ain preferences and values and to prepare themselves and their families [11].
Several studies emphasize that information and preparation for the older person tin can contribute to less fear, fewer misunderstandings and the exploration of wishes with regard to the process of dying [11,12,13]. Notwithstanding, studies [6, eleven] have shown that older persons are insufficiently informed most the imminence of death, for which reason few of them have the opportunity to limited their wishes concerning care for the last phase of life. A qualitative study of chronically sick persons in nursing homes [xiv] points to the importance of a palliative care approach at an early on phase of dying at nursing homes: there is probable to be a meliorate quality of life when the older person'southward multi-dimensional needs can be satisfied. The importance of a palliative care arroyo at an early phase of dying, together with early planning, is confirmed past other studies [15,16,17].
The complexity of the older person's multi-morbidity may lead to difficulty in identifying when there is a demand to renegotiate the goal of care from a general sense to a palliative intendance approach [iv, 6, 18]. Because of the difficulties involved in identifying signs that precede dying in the older person, staff often delay adequate measures to run across palliative care needs [xv, 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 [21,22,23]. Brandt et al. [21] focused on physicians' experiences of dying amid 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 accept cancer. Nevertheless, a study [23] focusing on banana nurses' experiences has shown that banana nurses are able to identify both manifest and subtle signs of dying in general. Another report [22] that also focused on assistant nurses' experiences just 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, all the same, no study has been done which distinguishes between early and late signs of dying, nor whatsoever which focuses on the multidisciplinary team'southward collective experiences of early and late signs. Consequently, the aim of the nowadays study was to explore the experiences of early and belatedly 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.
Methods
Design
A qualitative arroyo with the focus group method was used in this written report. Existence exploratory in nature, this method is well-suited to the investigation of new areas/phenomena [24]. It involves group interviews in which the discussions amid the participants generate the data and the group interaction plays an important function. A focus group usually consists of 3–12 persons from the target group, a moderator leading the give-and-take and an banana moderator [24].
Setting
The Swedish health organisation consists of inpatient and outpatient specialist care, principal health intendance and community intendance which are largely tax-funded. It is a public organization that offers equal admission for everyone to healthcare, elderly intendance and social services. The Elderly Reform [3] which came into effect in 1992 shifted the main responsibility for the health intendance and social services for older persons living at dwelling house or in some form of sheltered housing, transferring it from the county councils to the municipalities. This means that older persons with multimorbidity and thus the greatest need for care take priority when it comes to accommodation with provided help. In Sweden, the care setting that provides a homelike atmosphere and offers around-the-clock care is the nursing habitation. The nursing homes consist of small apartments with their own charter. When the older person is so ill and frail that their care needs cannot be met in the ordinary home, a move to a nursing dwelling house comes into question. When an awarding has been made for a place in a nursing home, the social worker in the municipality decides whether the older person's demand of everyday intendance is so great that moving to a nursing dwelling is necessary. The staff at the nursing homes have varied education and experience. Some of them are trained nurses or assistant nurses, employed past the municipality; and some take no education at all in gerontology or geriatrics. There are also persons among the staff that take an education in social work, generally unit managers [25].
The participants in this study, i.eastward. staff in the team working effectually the older person, were recruited from nursing homes from the major project "Knowledge-Based Palliative Care for Fragile Older Persons in Nursing Homes" (KUPA), where knowledge-based palliative intendance was implemented in nursing homes through educational seminars [26]. For this study, iv out of a total of 30 eligible nursing homes were selected to ensure variation. These four nursing homes were from four municipalities in southern Sweden. They differed in size and represented both rural and urban areas. The interviews were conducted before the staff received the educational intervention concerning palliative care [26].
Sampling and participants
The unit of measurement managers at the four selected nursing homes were asked if they were willing for their unit to participate in this study and all iv gave their consent. The unit managers asked the staff whether they wanted to participate in 1 focus group interview. It had been recommended that they enquire a mixture of staff (assistant nurse, registered nurse, occupational therapist, physiotherapist, social worker) that worked daily with the older person and that had at least two years' work feel in nursing homes. Also, a variation in terms of age, gender and work experience of the participants was desirable. Xx persons agreed to participate. Their characteristics are shown in Table 1.
Data collection
Each unit manager decided fourth dimension and place for the focus group interview. The interview guide consists of semi-structured questions and the interview was done in a discrete room at the nursing dwelling. The participants were asked to fill in a questionnaire earlier the interviews started with background information (shown in Tabular array 1). The focus grouping session started with everyone in the group presenting themselves, with name and profession. The interview guide developed for this study included the following main questions: What would you say are early signs that can be identified in an older person that has a palliative care need? What would you say are late signs that tin can be identified in an older person that has a palliative intendance need? To further deepen the discussion, probing questions were used, such as: What do yous think about that? Tin can you tell us more than? Is at that place anything else? In this study, the term "a palliative care need" means that the older person has physical, psychological and social needs related to the fact that the goal of care has shifted from existence curative to being focused on the prevention and relief of suffering. The significant of "early signs" (i.e. signs from months upward to a year before dying) and of "late signs" (i.e. signs in the end of life — days or weeks earlier dying) was explained to the participants earlier the interview began.
The focus groups were led by a moderator (offset author, H.Å-P) and an assistant moderator (last author, L.B). According to Krueger and Casey [24] the task of the moderator is to lead the discussion, keep it on-stream and listen to the participants, whilst that of the assistant moderator is to accept notes, ask additional questions and handle the digital recorder and the logistics. During the interviews the moderator and the banana moderator worked actively to ensure that all the participants were able to express their views near the subject. The four focus group interviews were conducted in Swedish and lasted 48–83 min. The digitally recorded interviews were transcribed verbatim.
Data analysis
The analysis was conducted according to the focus group method adult past Krueger and Casey [24]. The transcripts were read through several times in gild to create an overall flick of the data and to proceeds a deeper understanding of the squad's experiences of identifying early on and late signs preceding dying. Thereafter, pregnant units were identified in relation to the aim of the study. A meaning unit derives from a discussion amidst staff concerning 1 issue and comprises one or more sentences [24]. The pregnant units were then condensed in order to shorten the text but still maintain the content. Finally, the significant units were labelled with codes, and views with similar meanings were gathered in sub-categories, primary categories and afterward a theme.
The commencement author (H.Å-P) conducted the analysis together with the concluding writer (L.B), who too did a parallel independent assay apropos reading the transcripts and extracting meaning units, codes and categories. Rigour or trustworthiness according to Krueger and Casey [24] was upheld by means of investigator triangulation. Regular meetings were held throughout the analytical process where the other authors were involved in reading the interviews (A.S, Thousand.A) and reflecting on the content of the different concepts in the analysis (A.S, C-J. F, G.A). This procedure lasted until agreement was reached.
Results
The results consist of one theme, two main categories and eleven sub-categories. The theme "From unawareness to obviousness" describes the overall manner in which the participants identify early on and tardily signs preceding dying amid older persons in nursing homes (meet Tabular array 2).
From unawareness to obviousness
It was clear from the interviews that dying was seen every bit a happening and non a process, which meant that dying was associated with end-of-life. Early signs were not identified in exercise, which of course fabricated it hard for the participants to answer the question most how they identified them, while late signs were well-known and articulate. Even though information technology was a new manner of thinking, several suggestions equally to early signs preceding dying were described. The main category "Going into a bubble" accounts for how early signs preceding dying in older persons were described, and the chief category "The body begins to shut downward" accounts for how late signs were described.
Going into a chimera
The overall image of early signs preceding dying in older persons was that of going into a bubble. The participants described it equally beingness a question of the older person's showing signs of wanting to withdraw from the outside world and not caring well-nigh things to the same extent as before. The early signs described were multidimensional — concrete, psychological, social and existential — and were experienced as small and subtle, which required a precipitous eye or a person that knew the older person well to observe them. The main category Going into a bubble tin can be explained by way of the six sub-categories: Lack of interest in the surrounding globe, Depression mood, Increased sleep, Newly added confusion, Reduced physical ability and Decreased appetite.
Lack of interest in the surrounding world
A common early sign preceding dying was that the older person lost involvement in the surrounding earth, shielding themselves from it in different ways and usually start to talk virtually past experiences in their lives, e.g. babyhood. 1 example was an older person who previously had been social merely no longer appreciated visits or preferred fewer visits, another example was an older person who previously had looked forrard to visits by children and grandchildren merely no longer did and so. Some older persons commencement to prefer to have their food in their room, some become more than silent and want to exist left alone. Or there tin can be less interest in such activities equally exercise, watching television and listening to the radio.
Physiotherapist (PT): You've met a few... who've died, after you've got to know them over time. Then if you've looked back... — well, I can see something I'd never given much thought earlier.... A loss of interest, sort of, in sport, in sports results... Well well...
Assistant nurse (AN): Yes, I know just what you mean... When it comes to watching TV... or perhaps listening to music...
PT: Yes. It'due south not so interesting...
Registered nurse (RN): Yes, and yous hear "I don't want to picket TV. I haven't got the free energy."
PT: I wouldn't say they haven't got the energy, the ones I take in heed. They're just non interested.... There was one, for instance, who went to football a lot — agile and watched football... and then later on didn't have much interest in the results.
Low mood
One possible early on sign preceding dying was a change in the older person's mood, which could get depressed, irritable, low. This alter could outcome in the older person's not caring near being involved to the same extent as before in (to accept 1 example) decisions affecting their everyday life — and some get out the responsibility entirely to the staff. The depression mood could manifest as anything from saying it is not fun getting old to expressing a desire non to live any more than.
RN: They're quieter.
Moderator (MA): Mmm...
AN1: Depressed.
AN2: Shut yourself upwards in a world of your own.
MA: In what way do you think those are early signs, and then? Shutting yourself up, becoming depressed and quiet... — why is that an early sign, do you lot retrieve?
AN1: Well, you lot possibly spend a lot of time thinking about things... when you lot know what is going to happen... — and of form that can exist very tough.
MA: Mmm...
AN1: So anyway there may be times when you don't experience up to talking to anybody, and you shut yourself up.
Increased sleep
Increased sleep was discussed as an early sign. There could be an increased desire to prevarication downwards and rest, for instance wanting to lie on the bed once more and rest after the morning routine. As well it could get hard to wake the older person up, either in the morning or during the remainder of the day. Furthermore the older person might fall asleep more often during the mean solar day, while sitting, for instance, in the dining-room or in an armchair. Or an older person who has never before taken a rest later dinner all of a sudden feels a need to exercise so.
AN: And then it can exist someone, say, that's never had a prevarication-down afterwards dinner before simply has one now….
RN: Mmm...
AN: Oh, only yes, it's a bit that manner... and we await at it as more than or less normal [laughs]. I hateful, if you're over 80, 85... your body'south tired.
RN: Yes.
Newly added confusion
Confusion was seen every bit an early sign preceding dying and could exist observed every bit the older person'south suddenly starting time to bear and express themselves in a dissimilar way than before. The change was seen every bit a sign of something non being right. The participants were in understanding that any sign of confusion always should be advisedly investigated and that dissimilar possible causes always must be excluded before it could be interpreted as a sign preceding dying.
Unit manager (UM): Yes, I've come up across confusion.... It's often spoken of, but you demand to look into everything else first. If a person'due south dislocated it can be due to whatever of the things we've talked nigh, from an infection of the urinary tract to the issue of medicines.
Occupational therapist (OT): Mmm...
UM: So in that location are such a lot of things that can prevarication backside defoliation... Only I remember that'south a sign as well.
MA: Mmm...
Social worker (SW): And of course a alter of environment, likewise, is... causes defoliation.
AN: Or, in the same sort of fashion, if they're confused they perhaps don't know how to utilise their fork when they're going to swallow.
Reduced physical ability
The fact that the older person becomes weaker and has a greater tendency to fall was discussed and could be seen every bit an early on sign preceding dying. It was also brought upwards that a change in the ability to perform daily activities because of a general decline in function could exist a sign. This general reject could exist manifested in the form of a small alter in a person'southward pattern of motion. Perhaps a need of help had arisen, where for example a person had lost the ability to stand up without the assist of a mobility device.
MA: Well, the adjacent question that comes upward is: Is there anything more you can say nearly these early signs?
AM: Mmm... Falling, you mentioned...
OT: Mmm...
AM: Is it something yous notice? ... Do you lot get sent for then?
PT: Yes, when at that place'due south a autumn that'south out of the ordinary.... Yes, and you often see that, well, somebody that hasn't fallen at all before starts falling, and then usually soon subsequently they get "doddery".
MA: Yes.
PT: But and so you realize that this was the beginning of the cease.
Decreased appetite
Decreased appetite could be seen equally an early sign. The older person ate much less, and the fact that the person's dress became too large confirmed that there had indeed been a loss of weight. The participants believed that sometimes the older person had decided to reduce their nutrient intake because they did non want to live whatsoever more than. When an older person refused food that they previously enjoyed it could be seen as a resignation.
AN: Tired, finish eating….
OT: Yes, getting tired and stopping eating… that's the sort of thing nosotros see….
AN: And of course that'due south what we notice first… They may drink but….
OT: Yes….
AN: Merely non as much and….
AM: But is that an early sign?
AN: That they stop eating — yeah, I recall so. You come across, all too often they've already... — the thing is, some of them have simply decided "I don't want to comport on any more" and the merely thing they can do about information technology is to stop eating.
OT: Mmm...
AN: And that'southward what we come across so many times... that they don't want to carry on any longer.
The body begins to shut down
The overall impression of late signs preceding dying was that the torso begins to shut down, by which is meant that the older person shows signs that indicate that the body is starting to set up for death. The belatedly signs could be both concrete and psychological and were seen as indicating that the older person was in stop-of-life. The participants could clearly account for tardily signs and talk well-nigh them without vagueness. It became fully evident in the discussion that dying was something familiar which occurred in the participants' everyday work and that end-of-life intendance was something the participants had experienced several times. The primary category The trunk begins to shut downward tin be explained past means of five sub-categories: Reduced apportionment, Increasing worry and anxiety, Stopped eating and drinking, Loss of consciousness and Inverse breathing pattern (see Table 2).
Reduced circulation
Reduced circulation was described as a late sign of dying. The participants could observe changes in the colour of the older person's pare and that they were especially observant of the hands and feet, which could exist marbled. Furthermore, the participants pointed out that they were observant regarding cold hands and anxiety because that indicates that the blood apportionment is starting to fade, which is a sign related to the body's beginning to shut downwards. If force per unit area ulcers occur, this could be seen every bit a belatedly sign of dying because the older person often becomes bedridden at that stage and the skin often becomes ruby and affected.
RN: Considering I think otherwise there's and so much lying in bed, pressure level ulcers won't exist long coming.
AN: Nowadays things are then proficient... the mattresses and that. We don't demand to put in the piece of work we used to.
UM: I was only about to say, I think this place is pretty good in that fashion. Worse at the hospital….
OT: Yeah, I was going to say that a lot come up from the infirmary with ulcers, unfortunately. Just we're pretty proficient at keeping it in check hither ….
Increasing worry and anxiety
A late sign of dying mentioned by the participants was anxiety, which could manifest as anger and frustration. Information technology was brought up for discussion that equally older persons are often less able to talk at this stage, they endeavor to express themselves through body language, eastward.thou. waving their arms or making a racket. Another late sign which was often seen was that the older person had a broader worry which manifested as restlessness, incoherent talk and hallucinations.
SW: Tin can't it exist that the encephalon begins to sort of go into refuse — the brain's activity, that is — and y'all see things, and become a bit….
RN: Hallucinations and that sort of thing?
SW: Yes, exactly.
RN: Maybe so. At the same time there are pretty big differences, I'd say, when it comes to starting to hallucinate. There may be some people who never hallucinate at all, but information technology'southward a pretty common sign, I suppose...
AN: I hadn't thought about it before….
Stopped eating and drinking
In the end-of-life, the older persons stopped eating and drinking, which according to the participants is a late sign of dying. The fluid intake is usually sparing, with the result that the medicine cannot be taken orally and injections and mouth care are called for. The participants were surprised at how long an older person tin survive with hardly any fluid simply were unanimous in thinking that the person does non seems to suffer without nutrient or fluid.
AN: Then perhaps they don't eat anything anymore, and drink hardly anything at all. Well, and so it's good care that'south called for, and seeing that the person isn't in pain or in a country of feet.
RN: Yes, it's more a question of their existence in hurting. No want to eat — the body can't receive food. Information technology goes downhill very fast in the concluding phase.
AN: Yes. Tin't take their medicines….
RN: Well, in the end information technology'll be injections instead.
AN: Exactly.
Loss of consciousness
The participants pointed out that in the end-of-life the older person begins to sleep more and more and finally loses consciousness; and when this happens, information technology is a clear late sign preceding dying. This sign was for many of the participants a reminder that this is when stop-of-life care actually takes shape. Once an older person became bedridden, it was not long before the person's consciousness began to deteriorate, leading to unconsciousness. At this stage, when the older person is not contactable, the deterioration which led to death often went relatively fast.
MA: What signs of deterioration exercise you see appearing in an older person in life's last phase?
AN: Perhaps there's less and less contact….
MA: Mmm...
AN: Sleeping more than, beginning to feel feet and... — now I can see in front of my eyes, now that you enquire me, a person lying in bed and having adjacent to no energy, where it's a question of days...
AN, OT: Mmm….
AN: Or perhaps a week or so...
Changed breathing pattern
Another sign that the participants observed during the last days preceding dying was that the breathing pattern changed. The older person's animate might become slower, irregular, shallow and wheezy. Moreover, information technology was mentioned that the older person could hold their breath for a long time, which was described every bit frustrating by the participants because every breath was believed to be the last. This process could carry on for a while until death occurred.
PT: Animate, sometimes it can modify, of form. And you think, "Oh hell, is something going on with their breathing?" And so you hear it starting to compensate in some mode, turning into wheezing.
AN: Mmm... yes, there can be wheezing and long pauses in breathing sometimes, and you think the stop has come up. Just it can get on like that, that much we know. If there'due south no 1 keeping acuity you go past the audio of their breathing and then you probably need to be there even more oft.
MA: Mmm...
Discussion
This written report 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 commencement of the interviews the staff constitute it difficult 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 exist considered early. I reason why the staff found it hard to identify early on signs might be that they were non used to seeing dying every bit a procedure which extends over a time-period. The early on signs were described as subtle and were sometimes seen every bit both signs that precede dying and signs of something else than dying such as a affliction. Porock and Oliver [22] heighten ane possible reason why early on signs preceding dying get little attending at the nursing homes: talking well-nigh death is taboo amongst the staff, for which reason an increasing awareness that the older person is going to die can exist difficult to handle. An earlier study by Sahlberg-Blom and colleagues [23] on assistant nurses' experiences of signs of dying institute signs similar to those we ourselves found. The signs presented in their study cover concrete and psychosocial changes in older persons and include both subtle signs of dying such as feeling a desire to dice and manifest signs such as trunk changes, for case fatigue and difficulty in animate. Some other study [27] which explored how nursing dwelling house 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 equally 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.due east. the person was seen as a whole. The reason for the differences in the results might exist 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. I way to explain this event is past means of the theory of gerotranscendence developed by Tornstam [25, 27, 28]. This theory almost the ageing process states that human being progress is a life-long development that stretches into old age and finally results in a new agreement of life. Ane of the levels in gerotranscendence is the catholic level, which includes the dimensions of time and infinite. Changes occur in the perception of time and infinite which can crusade the border between present and past to get 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 non caring almost things to the same extent as earlier tin 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 cognition of the transition into old age and provide a ground 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, information technology would increase their agreement of the older person's needs, perhaps (to mention but one possible do good) providing the initiative for more talks. Guidelines for nursing have been adult from the theory of gerotranscendence [xxx], and these could be used equally a tool for the staff to support the older persons in their progress towards gerotranscendence. In addition an intervention has been fabricated to innovate the guidelines to staff in nursing home, involving viii occasions with lectures and give-and-take 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 every bit a normal function of ageing instead of as pathological.
A recurring early sign was resignation: the older person sometimes seemed to take given up and did not desire to live any more. This resignation could appear in different forms amid the older persons, e.g. withdrawal from social contexts, decreased appetite and lack of motivation. Montoya-Juarez and colleagues [32] land that persons use psychological defences to cope with the challenges that ascend in the terminate-of-life. Resignation can be seen as i such defense and tin can be shown through negative feelings and thoughts which are given verbal expression. In improver, resignation can also include a feeling of credence which may provide a sure amount of at-home 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 contained, just when they started experiencing dumb role at that place arose feelings similar emptiness, resignation and blues. Fifty-fifty if they knew that they should try to engage in different activities, they did not accept the initiative. Resignation tin also exist seen equally a part of gerotranscendence [25, 27, 28]. Co-ordinate to the theory the fear of decease has decreased and the older person can talk in greater depth about dying and express such feelings as that they do non want to live any more.
In contrast to the early signs that precede dying, late signs of dying were familiar. The staff had the noesis concerning which signs to look for and they used it in everyday practice. Information technology was clear from the interviews that dying was seen equally a happening rather than every bit a procedure, meaning that information technology was restricted to the concluding days or weeks of the older person'due south life. These results are in line with results obtained by Beck and colleagues [34] which showed that banana nurses in nursing homes experience palliative care as lasting only for a short and limited time. The focus on tardily signs might be attributable to the fact these signs are obvious, i.east. 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 [21,22,23] and the staff are well aware of them. In contrast to the holistic view of the older person continued to early on 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 frequently bedridden and unconscious. Nevertheless, in club to provide a holistic intendance and bide by the bones values of palliative care (presence, wholeness, knowledge and empathy), social and existential aspects besides need to be taken into consideration [18]. Fifty-fifty 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 intendance is practical in nursing homes [38,39,40]. Nevertheless, an early on training for end-of life seems to be lacking. Waldrop and colleagues [41] fence 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 abode residents are to exist considered as dying, although not necessarily imminently. Thus a palliative care approach could be put into identify from the very start of a person's residence at a nursing home, e.yard. using advanced care planning. Advanced intendance planning is an early ongoing advice and decision-making process with the older person and their side by side of kin which addresses the budgeted decease. Studies testify that avant-garde care planning can improve the quality of end-of-life care (EoLC) [42], increase the number of EoLC discussions and raise cyclopedia betwixt patient preferences and provided care [43, 44]. However, a recent review highlights that implementation of avant-garde care planning in nursing homes requires the interest and educational activity of staff, including nurses, physicians and leaders [45].
In that location are some methodological issues that demand to be discussed, offset the recruitment process. We asked the unit managers of the nursing homes to inquire the staff if there was anyone interested in participating in the study. This arroyo in recruitment tin be seen in two ways. At that place can be a methodological problem with regard to volunteering because a asking from the unit manager to participate in a study can be perceived equally mandatory. Withal, Kreuger and Casey [24] signal that a person may meet it as a adept affair to exist chosen past the unit of measurement manager: the person feels honored and special, and participation is experienced equally something positive. The unit managers included the staff who had a special involvement in palliative intendance and those who thought the report seemed interesting. The researcher's perception with regard to the focus groups was that anybody had decided for themselves whether they wanted to participate or not and that anybody was engaged and interested, which led to a comfortable climate during the interviews.
Another outcome that needs attention is the representation in each focus group of dissimilar 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 director should participate in each interview, but it was non possible to obtain all professions for all groups. However, the results of this study can be seen equally a whole, which could make the drib-out less probable to influence the results remarkably. One profession which was represented in all focus groups was that of banana nurse. Studies [23, 34] testify that the banana nurses' applied noesis is of keen importance for the multidisciplinary team. This was too evident in the interviews. In relation to this issue, ane 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 nearly knowledge of signs that precede dying. This is likewise axiomatic in earlier studies [22, 23]. However, every bit the complex needs of frail older persons require diverse professionals to be able to offering a holistic care [thirteen], the experience represented by the multi-professional person team is of importance. Ane profession that is a natural office 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 past another arrangement and only come up as consultants, i.e. practice not work daily with the older persons.
Within the focus groups most of the staff knew each other before the interviews, which might take afflicted the answers and the discussion. The staff felt calm and secure in the interviews because there were persons they know, which could accept meant a more comfortable climate and a greater readiness to discuss sensitive matters. Reflecting our own experiences, Kreuger and Casey [24] contend that there must exist a concern in focus group interviews to reach a balance whereby there is enough variation within the group at the same fourth dimension every bit this variation is non such that some of the participants go silent considering the other participants accept greater education or experience. In the focus grouping interviews the moderator and the assistant moderator worked actively to ensure that all staff should be able to speak.
The written report includes four nursing homes in two counties in four municipalities in southern Sweden, which can be seen as a narrow sample. Nevertheless, in qualitative studies generalization is non the goal, which is instead to present results which can exist transferred to similar contexts. Whether the results are transferable to some other context is a question for the reader'south cess [46].
Conclusions
The team working with the older person found it difficult to identify early signs that precede dying mainly because they did not see dying every bit a process but every bit a happening, restricted to the last weeks or days of the older person's life. One early sign that the participants identified in dissimilar ways amid the older persons was resignation, east.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 babyhood to the present. Belatedly signs that precede dying were familiar, observed by the staff in everyday practice. The squad's collective experience of early and late signs that precede dying constitutes new noesis that has never been shown in the literature before. This knowledge tin can increase the understanding of when a palliative care arroyo needs to be in place at nursing homes. This arroyo is relevant to avant-garde intendance 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 intendance might encourage the managers to facilitate the implementation of a palliative intendance approach in nursing homes.
Abbreviations
- AM:
-
Assistant moderator
- AN:
-
Assistant nurse
- EoLC:
-
Finish-of-life intendance
- MA:
-
Moderator
- OT:
-
Occupational therapist
- PT:
-
Physiotherapist
- RN:
-
Registered nurse
- SW:
-
Social worker
- UM:
-
Unit of measurement manager
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Acknowledgements
We would like to thank all the participants from the multidisciplinary teams at each nursing home for your valuable contributions to the study.
Funding
This study is mainly supported by grants from the Swedish Research Council, the Vårdal Foundation and the Ribbingska Memorial Foundation. We would too like to acknowledge the support of the Medical Faculty, Lund University; The Center for Collaborative Palliative Intendance, Linnaeus Academy; and The Palliative Care Institute at Lund University and Region Skåne.
Availability of data and materials
The datasets used and analyzed during the study are available from the respective writer upon request and field of study to upstanding approval (Dnr 2015/167).
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Affiliations
Contributions
G.A had the original thought for the study. The first author (H.Å-P) and the terminal writer (L.B) conducted all focus group interviews. H.Å-P conducted the analysis together with L.B, who as well performed a parallel independent analysis regarding reading the transcripts and extracting significant units, codes and categories. Regular meetings were held throughout the analytical process, involving the other authors who read the interviews (A.S, Grand.A) and weighed upwardly the content of the concepts used in the analysis (A.S, C-J.F, Thou.A). C-J.F has critically reviewed the important intellectual content of the analysis. All authors assisted with the study design, where C-J.F have contributed in the discussion most concepts and perspective regarding the study design. H.Å-P wrote the draft of this manuscript and L.B, A.S, G.A and C-J.F reviewed it. All authors read and approved the concluding manuscript.
Corresponding author
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Ethics blessing and consent to participate
Ethical approval was obtained from Regional Ethical Review Lath in Lund (Dnr 2015/167). The study was guided by the research-ethical principles for medical enquiry [47]. The leaders with the relevant responsibility in the four municipalities gave written consent to the carrying out of the study at the planned nursing homes. Before the interviews began, the participants received both oral and written information well-nigh the purpose of the study, about the confidential handling of the material and about the nature of participation (voluntary and subject to cancellation at any time). Informed signed consent was obtained from the participants before the interviews. The results are reported in such way as to maintain confidentiality.
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The authors declare that they have no competing interests.
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Åvik Persson, H., Sandgren, A., Fürst, CJ. et al. Early and tardily signs that precede dying among older persons in nursing homes: the multidisciplinary team's perspective. BMC Geriatr eighteen, 134 (2018). https://doi.org/10.1186/s12877-018-0825-0
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DOI : https://doi.org/x.1186/s12877-018-0825-0
Keywords
- Dying
- Multidisciplinary team
- Nursing home
- Older persons
- Palliative intendance
- Signs
Source: https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-018-0825-0
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