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Predicting Active Dying for a 90 Year Old Man

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

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Abstruse

Groundwork

Nursing home residents in Sweden are one-time, frail and unremarkably have multiple morbidities which often brand dying a prolonged suffering. It has been constitute that older persons at nursing homes receive far less palliative care than younger persons, partly because it is hard to identify when the concluding stage of life begins. The identification may help the staff to enable the older person and their families to participate in planning the intendance in accordance with their own preferences and values. With this in mind the aim was to explore the experiences of early on and belatedly signs preceding dying in older persons in nursing homes from the multidisciplinary team's perspective.

Methods

The focus group method was used to interview 20 health-care professionals on the basis of semi-structured questions. 4 focus groups were conducted at four nursing homes in ii counties in southern Sweden. The groups included unlike 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 1 major theme, from unawareness to obviousness, which illustrates that the participants experienced dying as a happening, not a process, and institute it hard to place early on signs. Even though it was a new way 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 globe. The main category "The body begins to shut downwards" illustrates belatedly signs, which meant that the older person showed signs that point that the body starts to fix for decease.

Conclusions

This written report conveys new knowledge apropos the multidisciplinary team's collective experience of early and late signs that precede dying. This cognition can increase the agreement of when a palliative care approach needs to be in place at nursing homes. The utilize of a palliative intendance approach 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 information technology has been calculated that in 2030 one person in four will exist 65 or older [one, 2]. Meanwhile, the Swedish "ageing in place" ideology, whereby older persons should be able to alive at home for as long every bit possible, has led to at that place being a decreasing number of beds in nursing homes. This has in turn led to a situation where it is only the near fragile older persons in our society today that are living in nursing homes [3]. Thus nursing habitation residents in Sweden are old, fragile and commonly have multiple chronic diseases, making the nursing dwelling a major arena for the provision of palliative care. Withal, it has been found that palliative care has not been bachelor for older persons dying from multiple morbidities or "sometime age" to the same extent as for younger persons, peradventure considering it can be more difficult to identify when the last stage of life begins [four,5,vi].

The majority of the older persons living in nursing homes likewise die in that location [5, vii, 8]. Dying from onetime age 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, ten] 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 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 [11,12,13]. Still, studies [6, xi] have shown that older persons are insufficiently informed about the imminence of decease, for which reason few of them have the opportunity to express their wishes apropos intendance for the terminal stage of life. A qualitative study of chronically ill persons in nursing homes [14] points to the importance of a palliative care arroyo at an early on phase of dying at nursing homes: in that location is probable to be a better quality of life when the older person's multi-dimensional needs tin be satisfied. The importance of a palliative intendance arroyo at an early stage of dying, together with early planning, is confirmed by other studies [fifteen,xvi,17].

The complexity of the older person'southward 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 intendance approach [4, 6, xviii]. Because of the difficulties involved in identifying signs that precede dying in the older person, staff oft delay adequate measures to run into palliative care needs [15, xvi]. There are a number of limitations to providing the best possible high-quality care in nursing homes, e.k. lack of a multidisciplinary approach and lack of back up 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, considering of the multi-dimensional skills [12].

There accept 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 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 non 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. Some other study [22] that also focused on assistant nurses' experiences just likewise 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 noesis, all the same, no study has been done which distinguishes between early and tardily 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 on and late signs preceding dying in older persons in nursing homes from the multidisciplinary squad's perspective. In this study, the multidisciplinary team involves members of several professions working daily with the older person.

Methods

Design

A qualitative approach with the focus group method was used in this study. Being exploratory in nature, this method is well-suited to the investigation of new areas/phenomena [24]. It involves group interviews in which the discussions amidst the participants generate the data and the grouping interaction plays an important role. A focus group usually consists of 3–12 persons from the target grouping, a moderator leading the discussion and an assistant moderator [24].

Setting

The Swedish health organization consists of inpatient and outpatient specialist care, primary wellness care and customs care which are largely tax-funded. It is a public system that offers equal access for everyone to healthcare, elderly care and social services. The Elderly Reform [3] which came into upshot in 1992 shifted the chief responsibility for the health care and social services for older persons living at home or in some form of sheltered housing, transferring it from the canton councils to the municipalities. This means that older persons with multimorbidity and thus the greatest need for care have priority when it comes to accommodation with provided help. In Sweden, the intendance setting that provides a homelike atmosphere and offers around-the-clock care is the nursing home. The nursing homes consist of modest apartments with their ain lease. When the older person is so sick and frail that their care needs cannot be met in the ordinary home, a move to a nursing habitation comes into question. When an awarding has been fabricated for a place in a nursing abode, the social worker in the municipality decides whether the older person's need of everyday intendance is so great that moving to a nursing home is necessary. The staff at the nursing homes accept varied teaching and experience. Some of them are trained nurses or assistant nurses, employed past the municipality; and some have no education at all in gerontology or geriatrics. At that place are also persons among the staff that accept an instruction in social work, mostly unit managers [25].

The participants in this study, i.east. staff in the team working effectually the older person, were recruited from nursing homes from the major project "Knowledge-Based Palliative Intendance for Frail Older Persons in Nursing Homes" (KUPA), where noesis-based palliative intendance was implemented in nursing homes through educational seminars [26]. For this written report, four 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 managers at the four selected nursing homes were asked if they were willing for their unit of measurement to participate in this study and all 4 gave their consent. The unit of measurement managers asked the staff whether they wanted to participate in one focus group interview. It had been recommended that they ask a mixture of staff (banana 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 historic period, gender and work experience of the participants was desirable. Twenty persons agreed to participate. Their characteristics are shown in Tabular array ane.

Table ane Characteristics of the participants in the study group

Total size table

Information collection

Each unit manager decided time 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 home. The participants were asked to fill up in a questionnaire before the interviews started with background information (shown in Table i). The focus group session started with everyone in the group presenting themselves, with name and profession. The interview guide adult for this study included the post-obit main questions: What would you say are early signs that tin be identified in an older person that has a palliative intendance need? What would you say are late signs that tin be identified in an older person that has a palliative care demand? To further deepen the give-and-take, probing questions were used, such equally: What exercise you lot call up about that? Tin you tell united states of america more? Is there annihilation else? In this written report, the term "a palliative care need" means that the older person has concrete, psychological and social needs related to the fact that the goal of care has shifted from being curative to existence focused on the prevention and relief of suffering. The meaning of "early signs" (i.eastward. signs from months up to a year earlier dying) and of "late signs" (i.e. signs in the cease of life — days or weeks earlier dying) was explained to the participants before the interview began.

The focus groups were led by a moderator (offset author, H.Ã…-P) and an assistant moderator (last author, L.B). According to Krueger and Casey [24] the task of the moderator is to lead the word, go along information technology on-stream and listen to the participants, whilst that of the assistant moderator is to take notes, inquire additional questions and handle the digital recorder and the logistics. During the interviews the moderator and the assistant moderator worked actively to ensure that all the participants were able to express their views about the subject. The four focus grouping interviews were conducted in Swedish and lasted 48–83 min. The digitally recorded interviews were transcribed verbatim.

Data analysis

The analysis was conducted co-ordinate to the focus group method adult by 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 team'southward experiences of identifying early and belatedly signs preceding dying. Thereafter, meaning units were identified in relation to the aim of the written report. A meaning unit derives from a discussion amid staff concerning one issue and comprises one or more sentences [24]. The meaning units were and so condensed in social club to shorten the text just withal maintain the content. Finally, the significant units were labelled with codes, and views with similar meanings were gathered in sub-categories, chief categories and later a theme.

The first author (H.Ã…-P) conducted the analysis together with the concluding writer (L.B), who too did a parallel independent assay concerning reading the transcripts and extracting meaning units, codes and categories. Rigour or trustworthiness according to Krueger and Casey [24] was upheld past means of investigator triangulation. Regular meetings were held throughout the belittling process where the other authors were involved in reading the interviews (A.S, G.A) and reflecting on the content of the different concepts in the assay (A.S, C-J. F, G.A). This process lasted until agreement was reached.

Results

The results consist of one theme, two main categories and 11 sub-categories. The theme "From unawareness to obviousness" describes the overall manner in which the participants place early and late signs preceding dying amongst older persons in nursing homes (come across Table two).

Tabular array 2 The theme, principal categories and sub-categories

Full size table

From unawareness to obviousness

Information technology was clear from the interviews that dying was seen as a happening and non a procedure, which meant that dying was associated with end-of-life. Early signs were not identified in practice, which of class made it difficult for the participants to answer the question about how they identified them, while tardily signs were well-known and clear. Even though it was a new way of thinking, several suggestions equally to early on signs preceding dying were described. The primary category "Going into a bubble" accounts for how early signs preceding dying in older persons were described, and the main category "The body begins to close downwardly" accounts for how late signs were described.

Going into a bubble

The overall image of early on signs preceding dying in older persons was that of going into a bubble. The participants described information technology as being a question of the older person's showing signs of wanting to withdraw from the exterior world and not caring almost things to the aforementioned extent as before. The early signs described were multidimensional — concrete, psychological, social and existential — and were experienced as modest and subtle, which required a sharp eye or a person that knew the older person well to observe them. The primary category Going into a bubble can exist explained by way of the six sub-categories: Lack of interest in the surrounding world, Low mood, Increased sleep, Newly added confusion, Reduced physical power and Decreased appetite.

Lack of interest in the surrounding earth

A common early sign preceding dying was that the older person lost interest in the surrounding world, shielding themselves from it in different ways and commonly start to talk almost past experiences in their lives, east.g. childhood. One instance was an older person who previously had been social but no longer appreciated visits or preferred fewer visits, some other example was an older person who previously had looked frontwards to visits by children and grandchildren but no longer did then. Some older persons start to prefer to accept their food in their room, some become more silent and want to be left lonely. Or at that place can be less involvement in such activities as do, watching goggle box and listening to the radio.

Physiotherapist (PT): You've met a few... who've died, later you've got to know them over time. So if you've looked back... — well, I can come across something I'd never given much thought before.... A loss of involvement, sort of, in sport, in sports results... Well well...

Assistant nurse (AN): Yep, I know but what you mean... When it comes to watching Television receiver... or perhaps listening to music...

PT: Yes. It's non so interesting...

Registered nurse (RN): Aye, and you hear "I don't want to picket Television set. I haven't got the energy."

PT: I wouldn't say they oasis't got the energy, the ones I have in mind. They're just not interested.... In that location was i, for instance, who went to football a lot — active and watched football... and then after on didn't have much interest in the results.

Low mood

One possible early sign preceding dying was a change in the older person'south mood, which could go depressed, irritable, low. This change could consequence in the older person'south not caring virtually existence involved to the aforementioned extent as before in (to take one example) decisions affecting their everyday life — and some leave the responsibility entirely to the staff. The low mood could manifest as annihilation from saying information technology is non fun getting old to expressing a desire non to live whatever more.

RN: They're quieter.

Moderator (MA): Mmm...

AN1: Depressed.

AN2: Close yourself up in a globe of your own.

MA: In what way do you think those are early signs, and so? Shutting yourself upwardly, becoming depressed and quiet... — why is that an early sign, practise you think?

AN1: Well, you maybe spend a lot of fourth dimension thinking well-nigh things... when you know what is going to happen... — and of course that tin be very tough.

MA: Mmm...

AN1: And then anyway there may be times when you lot don't experience upward to talking to anybody, and you shut yourself up.

Increased sleep

Increased slumber was discussed as an early sign. There could be an increased desire to prevarication downwardly and rest, for example wanting to lie on the bed again and remainder after the forenoon routine. Also it could become difficult to wake the older person up, either in the morning or during the rest of the 24-hour interval. Furthermore the older person might fall asleep more often during the twenty-four hours, while sitting, for case, in the dining-room or in an armchair. Or an older person who has never before taken a remainder after dinner suddenly feels a need to do and so.

AN: And so it can exist someone, say, that's never had a lie-down later dinner before simply has one now….

RN: Mmm...

AN: Oh, just aye, it'due south a bit that style... and we await at it as more or less normal [laughs]. I mean, if you're over 80, 85... your body'due south tired.

RN: Aye.

Newly added confusion

Confusion was seen as an early sign preceding dying and could be observed as the older person's all of a sudden beginning to behave and limited themselves in a unlike fashion than before. The change was seen as a sign of something not existence correct. The participants were in agreement that any sign of confusion always should be carefully investigated and that different possible causes always must be excluded before information technology could be interpreted equally a sign preceding dying.

Unit director (UM): Yes, I've come beyond confusion.... It's often spoken of, but y'all need to look into everything else first. If a person'southward confused it tin can be due to any of the things nosotros've talked about, from an infection of the urinary tract to the effect of medicines.

Occupational therapist (OT): Mmm...

UM: So there are such a lot of things that can prevarication backside defoliation... But I think that's a sign likewise.

MA: Mmm...

Social worker (SW): And of form a modify of environment, also, is... causes confusion.

AN: Or, in the same sort of way, if they're confused they perhaps don't know how to use their fork when they're going to eat.

Reduced physical ability

The fact that the older person becomes weaker and has a greater trend to autumn was discussed and could be seen as an early sign preceding dying. It was also brought up that a change in the ability to perform daily activities considering of a general decline in function could exist a sign. This general reject could be manifested in the class of a small alter in a person's pattern of movement. Maybe a need of help had arisen, where for instance a person had lost the ability to stand up without the help of a mobility device.

MA: Well, the adjacent question that comes up is: Is there anything more yous tin can say near these early signs?

AM: Mmm... Falling, y'all mentioned...

OT: Mmm...

AM: Is it something y'all notice? ... Do you get sent for then?

PT: Aye, when there'south a autumn that'southward out of the ordinary.... Yes, and you often see that, well, somebody that hasn't fallen at all before starts falling, and and so ordinarily soon afterward they get "doddery".

MA: Yes.

PT: But so yous realize that this was the kickoff of the end.

Decreased ambition

Decreased appetite could be seen as an early sign. The older person ate much less, and the fact that the person's clothes became too big confirmed that at that place had indeed been a loss of weight. The participants believed that sometimes the older person had decided to reduce their food intake because they did not want to live whatever more. When an older person refused food that they previously enjoyed it could be seen equally a resignation.

AN: Tired, stop eating….

OT: Yes, getting tired and stopping eating… that's the sort of matter we encounter….

AN: And of class that's what nosotros detect commencement… They may drink but….

OT: Aye….

AN: But not equally much and….

AM: Only is that an early sign?

AN: That they stop eating — yes, I think so. You lot see, all too ofttimes they've already... — the thing is, some of them take simply decided "I don't desire to carry on whatsoever more than" and the only thing they tin can do most it is to stop eating.

OT: Mmm...

AN: And that'southward what nosotros see then many times... that they don't want to acquit on whatever longer.

The body begins to shut down

The overall impression of tardily signs preceding dying was that the body begins to close downwards, by which is meant that the older person shows signs that indicate that the body is starting to prepare for expiry. The late signs could be both concrete and psychological and were seen every bit indicating that the older person was in end-of-life. The participants could clearly business relationship for belatedly signs and talk most them without vagueness. Information technology became fully axiomatic in the discussion that dying was something familiar which occurred in the participants' everyday work and that cease-of-life care was something the participants had experienced several times. The chief category The body begins to shut down can exist explained by means of five sub-categories: Reduced apportionment, Increasing worry and anxiety, Stopped eating and drinking, Loss of consciousness and Changed animate pattern (meet Table ii).

Reduced apportionment

Reduced apportionment was described every bit a late sign of dying. The participants could observe changes in the colour of the older person's skin and that they were particularly observant of the hands and feet, which could be marbled. Furthermore, the participants pointed out that they were observant regarding cold easily and feet because that indicates that the claret circulation is starting to fade, which is a sign related to the body's showtime to shut down. If pressure ulcers occur, this could be seen as a tardily sign of dying because the older person ofttimes becomes bedridden at that phase and the skin often becomes red and affected.

RN: Because I think otherwise in that location's so much lying in bed, pressure ulcers won't be long coming.

AN: Present things are so proficient... the mattresses and that. We don't demand to put in the work we used to.

UM: I was just about to say, I think this place is pretty good in that way. Worse at the hospital….

OT: Yes, I was going to say that a lot come from the hospital with ulcers, unfortunately. Only we're pretty expert at keeping it in bank check hither ….

Increasing worry and anxiety

A belatedly sign of dying mentioned by the participants was anxiety, which could manifest equally acrimony and frustration. It was brought up for discussion that as older persons are often less able to talk at this phase, they effort to limited themselves through body language, e.k. waving their arms or making a noise. Some other late sign which was oftentimes seen was that the older person had a broader worry which manifested every bit restlessness, incoherent talk and hallucinations.

SW: Can't it be that the brain begins to sort of go into pass up — the brain'south activity, that is — and you see things, and become a scrap….

RN: Hallucinations and that sort of thing?

SW: Yes, exactly.

RN: Mayhap then. At the aforementioned fourth dimension there are pretty big differences, I'd say, when it comes to starting to hallucinate. At that place may exist some people who never hallucinate at all, just it's a pretty common sign, I suppose...

AN: I hadn't thought almost it earlier….

Stopped eating and drinking

In the end-of-life, the older persons stopped eating and drinking, which according to the participants is a belatedly sign of dying. The fluid intake is usually sparing, with the result that the medicine cannot be taken orally and injections and oral fissure care are chosen for. The participants were surprised at how long an older person tin can survive with hardly any fluid simply were unanimous in thinking that the person does not seems to endure without food or fluid.

AN: And so perhaps they don't eat anything anymore, and drink hardly anything at all. Well, and then it'southward skilful care that's called for, and seeing that the person isn't in pain or in a land of feet.

RN: Yep, information technology'due south more a question of their being in pain. No want to consume — the body tin can't receive food. It goes downhill very fast in the last phase.

AN: Yeah. Can't accept their medicines….

RN: Well, in the terminate it'll exist injections instead.

AN: Exactly.

Loss of consciousness

The participants pointed out that in the end-of-life the older person begins to sleep more than and more and finally loses consciousness; and when this happens, information technology is a articulate late sign preceding dying. This sign was for many of the participants a reminder that this is when cease-of-life care actually takes shape. Once an older person became bedridden, information technology was non long before the person's consciousness began to deteriorate, leading to unconsciousness. At this stage, when the older person is non contactable, the deterioration which led to expiry frequently went relatively fast.

MA: What signs of deterioration exercise y'all see appearing in an older person in life'south final stage?

AN: Perhaps there'southward less and less contact….

MA: Mmm...

AN: Sleeping more than, kickoff to feel anxiety and... — now I tin can run across in front of my eyes, now that you ask me, a person lying in bed and having next to no energy, where it's a question of days...

AN, OT: Mmm….

AN: Or possibly a week or so...

Changed breathing pattern

Some other sign that the participants observed during the last days preceding dying was that the breathing design changed. The older person's breathing might get slower, irregular, shallow and wheezy. Moreover, it was mentioned that the older person could hold their jiff for a long time, which was described as frustrating by the participants because every jiff was believed to be the last. This process could carry on for a while until death occurred.

PT: Breathing, sometimes information technology can change, of course. And y'all think, "Oh hell, is something going on with their animate?" Then yous hear it starting to compensate in some mode, turning into wheezing.

AN: Mmm... yep, there tin be wheezing and long pauses in breathing sometimes, and you think the end has come. But it can go on like that, that much we know. If in that location's no ane keeping acuity y'all get by the sound of their animate and then you probably need to be there even more often.

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 beginning of the interviews the staff found it hard to imagine what such signs might be, they later on — with the assist of the discussions in the focus grouping — started to get closer to several signs which could be considered early. One reason why the staff institute information technology hard to identify early signs might exist that they were not used to seeing dying as a procedure which extends over a fourth dimension-period. The early signs were described as subtle and were sometimes seen every bit both signs that precede dying and signs of something else than dying such equally a disease. Porock and Oliver [22] raise i possible reason why early on signs preceding dying get little attending at the nursing homes: talking about expiry is taboo amid the staff, for which reason an increasing awareness that the older person is going to dice can be difficult to handle. An earlier written report by Sahlberg-Blom and colleagues [23] on assistant nurses' experiences of signs of dying found signs like to those we ourselves found. The signs presented in their written report comprehend 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 instance 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 constitute that the staff discussed physical changes every bit 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 every bit a whole. The reason for the differences in the results might be that the staff were of dissimilar 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 well-nigh past experiences. One style to explain this result is by ways of the theory of gerotranscendence adult by Tornstam [25, 27, 28]. This theory nearly the ageing process states that homo progress is a life-long evolution that stretches into old historic period 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 fourth dimension and space which tin crusade the border between nowadays and past to go 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 exterior globe and of not caring nearly things to the same extent every bit earlier 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 quondam historic period and provide a basis for staff'due south word of how to provide optimum care for the older person and how to back up ageing. If the staff at nursing homes had knowledge about gerotranscendence, information technology would increase their understanding of the older person's needs, perchance (to mention but one possible do good) providing the initiative for more than talks. Guidelines for nursing have been developed from the theory of gerotranscendence [xxx], 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 innovate 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 later the intervention and experienced them now as a normal part of ageing instead of equally pathological.

A recurring early sign was resignation: the older person sometimes seemed to have given up and did not want to live any more than. This resignation could appear in different forms among the older persons, east.g. withdrawal from social contexts, decreased ambition and lack of motivation. Montoya-Juarez and colleagues [32] state that persons utilize psychological defences to cope with the challenges that arise in the end-of-life. Resignation can be seen as one such defense force and can be shown through negative feelings and thoughts which are given verbal expression. In addition, resignation can too 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 contained, but when they started experiencing dumb function there arose feelings like emptiness, resignation and dejection. Fifty-fifty if they knew that they should effort to engage in different activities, they did not accept the initiative. Resignation can likewise 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 nearly dying and express such feelings as that they exercise not want to live whatsoever more than.

In contrast to the early signs that precede dying, late signs of dying were familiar. The staff had the noesis concerning which signs to await for and they used information technology in everyday practice. It was articulate from the interviews that dying was seen equally a happening rather than as a process, pregnant 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 feel palliative intendance as lasting only for a short and limited fourth dimension. The focus on late signs might exist attributable to the fact these signs are obvious, i.e. they are familiar, articulate and prominent in the concluding days or weeks. The late signs are also similar to those that accept 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 tardily signs. This is in line with earlier enquiry [35, 36]. This might exist explained by the fact that during the final week/days the older person is frequently bedridden and unconscious. However, in order to provide a holistic care and abide by the basic values of palliative intendance (presence, wholeness, knowledge and empathy), social and existential aspects also demand to be taken into consideration [18]. Even though the older person is unconscious, the right to exist treated with dignity remains, and it is regulated in the Swedish Health and Medical Services Act [37].

Today, person-centred care is practical in nursing homes [38,39,40]. However, an early training for end-of life seems to be lacking. Waldrop and colleagues [41] argue that all nursing domicile residents are admitted because of a medical crunch 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 identify from the very start of a person's residence at a nursing dwelling, due east.g. using advanced care planning. Advanced intendance planning is an early on ongoing communication and decision-making process with the older person and their side by side of kin which addresses the approaching death. Studies show that advanced care planning tin can meliorate the quality of end-of-life care (EoLC) [42], increase the number of EoLC discussions and heighten cyclopedia between patient preferences and provided care [43, 44]. Even so, a contempo review highlights that implementation of advanced intendance planning in nursing homes requires the involvement and education of staff, including nurses, physicians and leaders [45].

At that place are some methodological bug that need to exist discussed, first the recruitment process. We asked the unit managers of the nursing homes to ask the staff if in that location was anyone interested in participating in the study. This arroyo in recruitment can exist seen in two ways. There can be a methodological problem with regard to volunteering because a asking from the unit manager to participate in a study can be perceived as mandatory. Still, Kreuger and Casey [24] indicate that a person may see it as a practiced thing to be chosen by the unit director: the person feels honored and special, and participation is experienced as something positive. The unit managers included the staff who had a special involvement in palliative care and those who idea 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 comfy 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 of measurement director should participate in each interview, only 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 brand the drop-out less likely to influence the results remarkably. One profession which was represented in all focus groups was that of banana nurse. Studies [23, 34] show that the banana nurses' practical knowledge is of keen 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 as well evident in before studies [22, 23]. However, equally the complex needs of frail older persons crave diverse professionals to exist able to offer a holistic care [13], the feel 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 past some other arrangement and only come up every bit consultants, i.due east. exercise non work daily with the older persons.

Within the focus groups nigh of the staff knew each other before the interviews, which might take affected the answers and the word. The staff felt at-home and secure in the interviews because at that place were persons they know, which could have meant a more than comfortable climate and a greater readiness to hash out sensitive matters. Reflecting our own experiences, Kreuger and Casey [24] argue that in that location must exist a concern in focus group interviews to accomplish 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 grouping interviews the moderator and the assistant moderator worked actively to ensure that all staff should be able to speak.

The report includes four nursing homes in 2 counties in 4 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 like contexts. Whether the results are transferable to another context is a question for the reader'south assessment [46].

Conclusions

The squad working with the older person found it difficult to place early signs that precede dying mainly considering they did not run into dying every bit a process but equally a happening, restricted to the last weeks or days of the older person'southward life. One early sign that the participants identified in different ways among the older persons was resignation, e.thousand. withdrawal from social contexts, lack of motivation and depression mood. Another sign was that the older person adult a need to get through their life, from babyhood to the present. Belatedly signs that precede dying were familiar, observed by the staff in everyday do. The squad's collective feel of early on 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 identify at nursing homes. This arroyo 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. Cognition of ageing, frailty and the dying process in older persons needs to exist part of the staff training. Also joint discussions within the arrangement regarding the preparedness for palliative care might encourage the managers to facilitate the implementation of a palliative care approach in nursing homes.

Abbreviations

AM:

Assistant moderator

AN:

Assistant nurse

EoLC:

End-of-life care

MA:

Moderator

OT:

Occupational therapist

PT:

Physiotherapist

RN:

Registered nurse

SW:

Social worker

UM:

Unit manager

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Acknowledgements

We would similar to thank all the participants from the multidisciplinary teams at each nursing domicile for your valuable contributions to the written report.

Funding

This study is mainly supported past grants from the Swedish Research Council, the Vårdal Foundation and the Ribbingska Memorial Foundation. We would also like to acknowledge the back up of the Medical Faculty, Lund University; The Centre for Collaborative Palliative Care, Linnaeus Academy; and The Palliative Intendance Institute at Lund Academy and Region Skåne.

Availability of information and materials

The datasets used and analyzed during the study are bachelor from the corresponding author upon asking and subject to ethical approval (Dnr 2015/167).

Author information

Affiliations

Contributions

Thou.A had the original idea for the study. The first author (H.Ã…-P) and the last author (L.B) conducted all focus group interviews. H.Ã…-P conducted the analysis together with Fifty.B, who also performed a parallel independent analysis regarding reading the transcripts and extracting meaning units, codes and categories. Regular meetings were held throughout the analytical process, involving the other authors who read the interviews (A.S, Yard.A) and weighed up the content of the concepts used in the analysis (A.S, C-J.F, Thousand.A). C-J.F has critically reviewed the important intellectual content of the analysis. All authors assisted with the report pattern, where C-J.F take contributed in the discussion about concepts and perspective regarding the study design. H.Ã…-P wrote the typhoon of this manuscript and L.B, A.South, Yard.A and C-J.F reviewed it. All authors read and approved the concluding manuscript.

Corresponding author

Correspondence to Helene Ã…vik Persson.

Ethics declarations

Ideals approving and consent to participate

Ethical approval was obtained from Regional Ethical Review Board in Lund (Dnr 2015/167). The report was guided by the research-ethical principles for medical research [47]. The leaders with the relevant responsibleness in the iv municipalities gave written consent to the carrying out of the written report at the planned nursing homes. Earlier the interviews began, the participants received both oral and written information about the purpose of the written report, about the confidential treatment of the material and nigh the nature of participation (voluntary and subject to counterfoil at any time). Informed signed consent was obtained from the participants before the interviews. The results are reported in such way every bit to maintain confidentiality.

Competing interests

The authors declare that they have no competing interests.

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Åvik Persson, H., Sandgren, A., Fürst, CJ. et al. Early and late signs that precede dying amongst older persons in nursing homes: the multidisciplinary team'due south perspective. BMC Geriatr 18, 134 (2018). https://doi.org/ten.1186/s12877-018-0825-0

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  • DOI : https://doi.org/10.1186/s12877-018-0825-0

Keywords

  • Dying
  • Multidisciplinary team
  • Nursing domicile
  • Older persons
  • Palliative care
  • Signs

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