Support practices by an interdisciplinary team in a palliative-care unit for relatives of patients in agonal phase

Participants were recruited from the PCU of Bordeaux University Hospital, which provides multidisciplinary support for relatives, as described in several previous studies [7, 12, 16]. All of the staff of the PCU, which opened in 1995, were invited to participate in this study. According to their availability, 25 staff involved at different levels in the support of relatives agreed to participate: three nurses, four care-assistants, five physicians, two psychologists, seven “individual professionals” (IPs) (psychometrician, secretary, socio-educational assistant, socio-aesthetician, health executive, physiotherapist, hospital service agent) and four palliative-care volunteers. The participants had between 3 months and 20 years of experience of working in a PCU (average of 8 and 3 years of experience among physicians and all other staff, respectively). In addition, seven relatives (the spouses of patients, aged between 40 and 70 years) were interviewed. They met the following criteria: accompanied the patient (including “basic body care”); a trusted by the patient; relative of a patient whose agonal phase had lasted more than 24 h and whose death had occurred at least 3 months before the study; and provided consent to participate in the study.

Information about the objectives and modalities of the research was presented at meetings and in a document distributed to all professionals in the unit and to the volunteer coordinator. Based on the volunteers’ schedules and the availability of each person, focus groups (FGs) were constructed to include various categories of participants.

Seven relatives meeting the inclusion criteria were contacted by telephone. After they agreed in principle, a document presenting the study was sent to them to obtain their consent to participate.

Verbal consent was obtained from all participating professionals and volunteers, in accordance with French law. Relatives confirmed their participation by mail. In France, this type of research does not require approval from a national ethics committee.

Data collection was based on the FG method, a group interview technique for gathering information on a targeted topic and collecting field knowledge and a wide range of opinions [20]. The FGs were organized according to the category of the participants: physicians, nurses, care assistants, psychologists, volunteers and relatives. The aim of this distribution was to facilitate open expression and to improve the quality of the information. The IPs met at a multi-professional meeting. These FGs were led by two psychologists; one was from outside the service and the other was part of the team. Interview guides developed for this study were used for all data collection (Additional files 1 and 2), and exchanges during the FGs were audio-recorded. The study was carried out from December 2017 to February 2018.

During the FGs, each practice mentioned was presented, discussed and then classified. Some were classified as consensual among the group participants (i.e. practiced by all participants). These were further divided into practices applied routinely, those applied occasionally and those that were applied rarely but merited greater application. All other practices were classified as non-consensual (i.e. practiced by only one or a few participants).

Verbatim audio recordings and additional notes (taken by the psychologists) were collected during the FG sessions. Also, practices were discussed and classified on flipchart.

All participants said that they needed to ‘approach relatives’, ask for exchanges with these people and show their availability (P36), especially during the agonal phase. By proposing formal and informal interviews, the caregivers helped relatives to mobilise necessary resources in the face of the ordeal of the agonal phase (P38). This reception served as an envelope for relatives in the pre-mourning period. They began to ‘become familiar with the prospect of death to be able to accept the difficult ordeal little by little, to gather the dying person’s last testimonies and messages, [...] and to support him or her in this final ordeal by giving him or her the maximum presence and affection’ [2]. Thus, the listening ability, availability, empathy and non-judgement of the interveners can facilitate the expression of those close to the dying person. Efforts to provide a climate of trust (P1) and the invitation for an exchange (P43) contributed to the creation of a therapeutic alliance, defined as a ‘mutual collaboration’ or ‘partnership’ between the patient and the therapist to achieve the objectives set [21, 22]. It also involves collaboration between the therapist and the relatives [23].

The theme ‘Interacting’ was important in the volunteers’ FG, which emphasised their inclination to offer specific support to relatives. Their place with the relatives was not defined by actions but by being present and listening. The IPs also made extensive reference to this theme. Interactions among professionals, palliative-care volunteers and relatives appear essential, given the physical and psychological morbidity of caregivers of patients in palliative situations (social isolation, accomplishment of many tasks), and the fact that they often feel ill-prepared for their role [24]. Their communication with the sick person is impaired and another stage in their relationship begins. Relatives said, ‘We are in a second state. We know we are going towards death’. They witnessed the patient’s loss, the alteration of his or her capacities and vigilance, relived the stages —through announcements, hopes, failures, anger and despair—and were confronted with their own vulnerability and their own death to come. Relatives questioned the meaning of this stage, of their presence and of their words when the dying person’s vigilance was impaired.

They expressed the hope that this period would not last long and their intense experience of facing the image of a degraded body. Their ambivalence was tangible, as they were torn between the desire to see the patient live and the desire for him or her to die without suffering.

The theme ‘Mobilising interdisciplinary skills’ was cited frequently by the IPs. The majority of this group work part-time in the unit, so a significant part of their activities involves liaising with their colleagues, participating in the transmission of information and informing themselves about care or steps taken in their area (P44, P48 and P50). Working in pairs seemed necessary to the participants to provide a dual view of situations (e.g. pain assessment; P44), and the term ‘transmission’ was used by all of them (P48). This act of ‘working together’ with coherence and cohesion requires knowledge of the profession and the roles and missions of the other participants, as well as time for formal or informal exchanges, to guarantee the quality of the teamwork. According to some authors, ‘presenting one’s specific expertise and recognising the contribution of others also means realising with humility and openness the richness as well as the limits and uncertainties of one’s specific profession’ [25]. Some practices are specific to one’s professional category (e.g. physical care), while others are common to several, as if each person had a specific role in achieving a common objective. For example, anticipation was cited by all participants (symptoms to come, steps to take, possible psychological developments) (P21, P30 and P34), as was the use of a genosociogram [7] (P50). Each participant was thus given a place in the group with ‘the mission of ensuring the continuity of the group to which he belongs’ [26]. He or she adopts the values, ideals and culture of the group, in this case, the palliative culture. Thus, psychologists positioned themselves as a third party, analysing the dynamics at play among the various participants so as to be able to propose an interpretation of the situation [27] (P49). Nurses assumed a coordinating role between the possibility of ‘deferring non-urgent care when relatives are visiting’ and considering the patient’s socio-cultural and religious practices (P39 and P40), practices with a type of adaptability that would not necessarily be transferable to all working contexts. Physicians, who played a protective role [28], mentioned reassuring relatives and their increased involvement in requests for euthanasia from relatives (P16 and P34).

The vast majority of the practices reported were consensual (92%); there was no evidence of any circumstance that would lead to ‘words in tension’ or endanger ‘the fruitful bond of living together’ [29], and disagreements and conflicts that undoubtedly occurred were not recorded [30]. This supports moving in the direction of establishing a coherent practice. Sharing these practices with other PCU teams would make it possible to check whether they are common among PCUs, or whether this coherence depends on the palliative culture of the PCU.

The care and comfort of the patient and his or her relatives are major elements of the support offered during the agonal phase. The care given to the patient was considered an accompaniment for the relatives, who were described by the professional caregivers to be ‘at the heart of suffering’ (P3). This support also involved attention to the physical well-being of the relatives, with a view to physiological balance (P4) and care of the body; massages and relaxation, through their containing function, offered security, allowing relatives to ‘free themselves emotionally’ [31] (P6 and P7). Care-assistants spoke of a ‘benevolent practice’, described in the literature as ‘therapeutic hugging’ and physical restraint [32], a benevolent practice of listening [33], which may be practised as part of the emotional or non-verbal communication between caregivers and realtives to which all are sensitive [34].

Relatives participate in some care or ‘co-care’ (care given with relatives) [35], a practice whose value has been studied [36]. Some authors have proposed that the relationship between professional caregivers and relatives in cancerology is ‘dialectical to say the least, if not [representative of] rivalry in the distribution of roles’ [37], which may put relatives at a greater or lesser distance [38]. However, in the PCU, co-care was offered to relatives to give them the possibility of (re) finding a role relative to the patient and to facilitate communication through touch.

Physicians listed a large number of practices related to the theme ‘Communicating, informing and explaining’, which reflects their particular involvement in interviews announcing the entry to the agonal phase. Considerable informations and explanations are provided to relatives to prevent possible misunderstandings. Some of this information concerned the evolution of the agonal phase, especially symptoms that have appeared or will appear in the future. At the same time, the professional caregivers explained the care provided to the patient and its usefulness for the patient’s comfort.

Relatives were very sensitive to the possibility of bidding farewell to the patient and being present at the time of death [34]. They demanded information on the disease and its future course; hence, the interest in proposing interviews [39]. Psychologists and physicians insisted that various topics be discussed during interviews with relatives (P16). Interviews with relatives helped people to get to know one another and reduced the gap between the reality of the situation and the perceptions of relatives. The interview may be expanded to include several relatives and may be conducted by several professionals in pairs or trios. On this occasion, relatives sometimes allowed themselves to express personal feelings (shame, guilt, injustice). They dealt with family dynamics, death, the future and more. Professionals described their intention to help relatives to ‘release guilt’ and ‘better understand the attitude of those around them’. According to the definition of the helping relationship, the caregiver will then have to ‘adapt his or her interventions according to his or her observations and offer support adapted to the person being cared for’ [40], while being aware of the need to ‘respect the pace of integration of information from relativesand to ‘question them about what is at stake for them’ at this stage of the illness. Tarberg et al. stressed that ‘a family perspective should be included in the concept of patient-centred care’ [39]. However, in this study, relatives were considered participants involved in the situation. Listening to relatives with a non-judgmental attitude enabled them to lay down their burden and provided them with genuine relief.

The moment when relatives enter the room was highlighted in these findings. Nurses mentioned that they provided care before the relatives entered and warned them of the medical devices and equipment they would find there (P1 and P17). Doctors underlined the psychological preparation necessary before relatives entered the room. These practices reflect the need to anticipate the meeting between relatives and the patient because the patient has potentially changed physically since the last visit, or because death has occurred. These practices aim to reduce the possible shock and facilitate physical approach of the dying person

A study suggests that certain bereavement experiences and support needs are specific to family caregivers providing end-of-life care, although this remains a poorly investigated issue. This paper focuses on themes related to bereavement, which were derived from an analysis of free text survey responses (1403 patients, carers, professionals, volunteers and members of the public). The responses demonstrated relationships among death experiences, feelings of guilt, and bereavement outcomes for some family caregivers, as well as caregiver experience of a ‘void’ created by the withdrawal of professional support after death [41].

Thus, considering relatives as caregivers is important, and helping them to help is just as important. This ‘complex and frequently reversible set of transactions between those who help and those who are helped’ [42] is called caregiving, which, in a context of dependency, underlies the involvement of caregivers and support volunteers.

Approaching death was evoked by all speakers during the agonal phase. Despite lack of knowledge about this phase, professionals seemed to have some clinical understanding of the agonal period and its symptoms, which they could describe and explain, while noting the limits of their knowledge about this period of life (P17–P25). This capacity for observation goes hand-in-hand with the quality of care and is itself a guarantee of quality support for relatives. Interviews announcing the proximity of death were conducted by a physician, often with a colleague (physician/psychologist or physician/nurse pair) (P20 and P22). Non-medical listening times, considered ‘human times’ for dialogue and sharing, seemed just as important to relatives (P31 and P35–P38). They were able to express themselves and to elaborate and reformulate the information received with the accompanying person. This process echoes Bion’s theory on the interaction between the baby’s psyche and the maternal psyche, considering that through the alpha function, ‘impressions of the senses and emotions’ are no longer felt by the baby ‘as things in themselves, undigested facts, raw experiences’, but will become ‘elements available for thought’ [43]. The death of another can then be considered.

Accompanying the patients’ relatives at the end of life can influence the course of the relatives’ mourning [2, 6, 40] and prevent psychiatric comorbidities after the patient’s death [44]. This reality underpins communication among carers, which is essential to their ability to be of help in all its clinical, practical, psychosocial and spiritual dimensions [45].

The practices reported by professional caregivers tended to allow relatives to remain present with the patient in a new way and to prepare them for that person’s disappearance. Tending to them (e.g. offering coffee) (P5), listening to them, proposing that they stay in the unit (P42), inviting them to take meals there, taking time for them (P9), providing a massage (P6), having helpful talks and providing psychological support (P16) are all part of the preparation for mourning and for a future despite absence. In addition, interveners can be attentive to certain factors that complicate grief, such as the relationship between the patient and a relative, the age of a relative, his or her health, professional status and the repetition of grief.

Finally, 12 practices cited during FGs mainly by physicians concerned the relatives’ requests for euthanasia (P16 and P34). Studies have primarily considered the ‘wish to hasten death’ as expressed by the patients themselves [46‐48]. The authors emphasise the value of questioning the origins of this wish and its meaning and function for the patient in all its forms, ranging from a hypothetical consideration of hastening death to an explicit request [49]. Physicians were particularly confronted with this sometimes-repeated request. They proposed elaborating on this request and on what might generate it, such as ambivalence, feelings of guilt, the experience that death is ‘unbearable’, etc. The literature also suggests that in these cases, carers experience a feeling of powerlessness [50], calling into question their skills and the institution’s capabilities.

Some relatives felt a lack of availability from the carers and a feeling of loneliness after the patient died; some mentioned that the support they received was not entirely satisfactory. According to some authors, a sufficiently good team is one that is ‘devoted, rigorous, meeting limits and concerned about them’ [25]. A good enough intervener would be one who tries to meet the needs of relatives in this period, knowing that they will not be able to avoid certain types of grief (loss of control and communication) and frustration.