Human Interactions 6-2

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Abstract This paper reports findings from an exploratory qualitative study concerning end-of-life support for family carers in an acute ward setting. The participants included bereaved carers of patients who had died in an acute ward or hospice, as well as health professionals. Interviews and focus groups were used to collect data. The study provides insights into the perceptions and needs of carers at the end of life and the challenges these present for nursing staff in an acute ward. This paper focuses on one key theme incorporating issues around communication between family and nursing staff and the availability of practical facilities. It provides information that may be beneficial to hospital staff who work in acute areas where there is an expectation they will support carers around the time of death. Key words: Carers l Support l Communication l End of life l Action research

S upporting carers is a key health policy in many countries. The end-of-life care strate- gies developed in each of the countries of the

UK recommend that carers receive support throughout the palliative and end-of-life phases of the patient journey and into bereavement (Department of Health (DH), 2008; Scottish Government, 2008; Department of Health, Social Services and Public Safety Northern Ireland, 2009). Policies in Canada (Health Canada, 2007), Australia (Commonwealth of Australia, 2010) and across the European Union (Hall et al, 2011) also recognise the need to support carers.

Palliative care can have a trajectory of days, weeks, or years. It is defined by the World Health Organization (2002) as care that ‘improves the quality of life of patients and families who face life-threatening illness, by providing pain and symptom relief, spiritual and psychosocial sup- port from diagnosis to the end of life and into bereavement’. A focus on support for patients and families at the end of life rather than cure is integral to both palliative and hospice care (Faull et al, 2005).

A well-managed death can help carers adjust to their situation (Payne et al, 2000). Thus, the way in which carers are supported around the time of death is important, particularly if the patient dete- riorates quickly and dies in hospital. Health-care systems emphasise the importance of care deliv- ered in communities and close to home, but most people in developed nations still die in an acute hospital setting (National Audit Office, 2008). Specialist palliative care teams have been estab- lished over the past 20 years, but death statistics in UK acute hospitals have remained much the same over the past 30 years. Ninety per cent of patients receiving palliative care spend the majority of their last year at home with family as carers, but around 57% return to hospital at the very end of life (Aoun and Kristjanson, 2005; Faull et al, 2005; Office for National Statistics, 2010).

Carers have a range of practical, financial, and psychological support needs as they deal with the

deterioration and impending death of their loved one. In some cases these needs may be unmet. Relatives and carers who may be vulnerable around the time of death may lack the knowl- edge and emotional energy required to ask for support when it is most needed (McIntyre, 2002). They may also find it difficult to identify an appropriate person to ask, not recognising the scope for the nurse to act in this role. Carer support is therefore complex and important, and demographic changes such as increased life expectancy and decreased birth rates indicate that the demand for carer support will rise.

This paper reports findings from the first phase of an action research study into supporting family carers at the end of life in an acute hospi- tal setting. It illuminates the experiences of both staff and bereaved carers.

Aim The aim of the part of the study reported here was to investigate the current support offered to carers near the end of life in an acute hospital setting, with a view to implementing changes to improve this area of care.

Research

Family carers’ experiences of support at the end of life: carers’ and health

professionals’ views Isabel Dosser, Catriona Kennedy

Isabel Dosser is Lecturer in Palliative Care, Edinburgh Napier University, School of Nursing, Midwifery and Social Care, Sighthill Court, Sighthill, EH11 4BN, Scotland; Catriona Kennedy is Professor of Nursing and Midwifery, Department of Nursing and Midwifery, University of Limerick, Limerick, Ireland, and Edinburgh Napier University, Scotland

Correspondence to: Isabel Dosser [email protected]

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Methodology The overall study used participatory action research. The underpinning philosophy of this method is to include the participants and work collaboratively with them as co-researchers (Koch and Kralik, 2006), involving them in any decisions and proposals. These key principles supported the aim of examining a particular area of nursing practice with a view to changing and improving care. Before commencing the action phase, the study required a snapshot of current practice to use as a benchmark to gauge future changes. Therefore phase 1, reported here, adopted a qualitative phenomenological method- ology to gauge the depth of experience and feeling of bereaved carers and staff on this emotive topic. This was intended to aid understanding of current practice to inform phase 2, the action phase, which will be reported separately.

The sample for phase 1 comprised bereaved carers and health professionals, and interviews and focus groups provided the means for data collection.

Ethics Ethical approval was granted by Edinburgh Napier University as well as the regional Intergrated Research Approval System and local hospice ethics committees.

Setting The setting comprised two acute wards in a large city teaching hospital, an 18-bed oncology ward and a 35-bed cardiorespiratory ward. The palliative care team participants were from three teams work- ing across the region, linked to the two hospices located at opposite ends of the city and covering different geographical areas. Both hospices offer inpatient, day care, and community services.

Sample Convenience sampling was adopted. The sample consisted of 13 bereaved carers, 3 specialist palli- ative care professionals, and 23 nursing staff from the teams on the two acute wards, as well as the 2 charge nurses from these wards (one from each). As many carers experience care for their loved ones in both the acute and the special- ist/hospice setting, it was thought important to recruit carers from this setting and to include the views of key specialist hospice staff.

Ethical approval was granted on the basis that the carers were to have been bereaved for between 4 and 12 months. This would mean that they would not be approached immediately fol- lowing the onset of bereavement while ensuring that their experience would be recent enough for

them to recall how they felt. The first three carers were recruited by hospice staff, who approached people whom they had indirectly worked with in their bereavement. The staff member provided the carer with an information sheet and explained the study and the option to participate. One carer was referred from each of the three hospice teams in the region.

Information about the other carers, who were connected to the acute hospital, was accessed from the admission books of the two participating wards. Their details were double-checked in the deceased patients’ medical records to ensure that contact was made with the appropriate person. All eligible carers were sent a letter explaining the study and inviting them to participate. A tear-off section was added to the letter of invitation with a self-addressed envelope for opting out. Six carers chose this option. Carers who did not return the tear-off slip within 10 days of receipt were then telephoned and invited to take part in the study. Sixty seven carers were identified in total from the ward information and 10 subsequently partici- pated (Table 1). This approach identified a total of 13 carers for interview.

Three specialist palliative care staff were also recruited by the researcher for interview, one from each of three bereavement teams. An initial request for approval to contact staff was made to the team managers. Once approval had been given, a letter was sent to each team asking for voluntary participation of staff involved in bereavement care. Two social workers and a chaplain volunteered and were interviewed.

Staff from the two wards were invited to join a focus group, and 23 participated. These were primarily registered nurses but also included unreg- istered support workers. There were no exclusion criteria within this group, but other members of the multidisciplinary team were excluded at the outset at the request of the charge nurses.

Data collection Much of the professional literature suggests that participation of bereaved carers in research that involves them sharing their story can be thera- peutic, regardless of the time since the death. Nonetheless, the conduct of such research requires careful planning and an experienced interviewer (Parkes, 1995; Seamark et al, 2000; Lowes and Paul, 2006; Beck and Konnert, 2007). These requirements informed the approach to data collection taken with the carers.

Interviews Data were collected from the carers and the three palliative care specialists through 18 individual

❛... the way in which carers are supported around the time of death is important, particularly if the patient deteriorates quickly and dies in hospital.❜

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semi-structured interviews (Bryman, 2004). The interviewer was an experienced clinician and researcher and the bereaved carers were clear what involvement entailed for them, including their right to withdraw at any time without prejudice. The interviews were held at mutually convenient times and locations, with 12 carers choosing to be interviewed at home and one at the local hospital. The three palliative care specialists were interviewed separately in venues across the region at a time suitable to them. All of the interviewees were given information about the study immediately prior to the interview. The carers were also mailed the information once telephone contact had been established and a date for their interview set. All of the participants gave written consent and permission for the inter- view to be digitally record. None of the interviews lasted longer than an hour.

The questions in the carer interviews were informed by the literature and explored what support the carers experienced around the time of death. The opening question was: ‘If you feel able, could you share with me what happened when your wife/husband/uncle became unwell?’ This approach worked well and allowed the bereaved carer to tell their story at their pace, with an occasional pause to clarify details. Other questions were rarely required as carers covered the majority of points in their stories; however, prompts if necessary included questions such as ‘What relationship did you have with the staff on the ward?’, ‘Do you feel you were supported by the staff before or following the death and if yes, in what ways?’

Focus groups The information about the focus groups was passed to the team by the charge nurses and the researcher when speaking informally to them in the ward. This followed negotiation and discus- sion between the researcher and relevant charge nurses about the most suitable time and dates to release staff and the venue. In reality, the focus groups and interviews with health professionals took place in an opportunistic way as it soon became clear that staff could not be released from the ward in groups or for lengthy periods of time. A compromise meant that the focus groups took place in a room on the ward with staff con- sent and sometimes at lunchtime to accommodate the working day.

Five focus groups took place (Table 2). A silent scribe, who was a colleague of the researcher with experience in research, sat in on the focus groups to record non-verbal communication or particular items of interest. One such example

was the visible alarm of a staff member when it was suggested that she could break bad news to a patient or carer.

To ensure confidentiality, the participant details were encoded and known only by the researcher. The study data was stored as required by the Data Protection Act 1998, with all written infor- mation and transcripts stored in locked cabinets or on the researcher’s personal computer, which offered protection from virus software.

Data analysis Thematic analysis, sometimes referred to as qualitative content analysis or interpretive analy- sis, was adopted for this exploratory phase. Data analysis was an ongoing reflective and reflexive process and began with the first interview. The digital recordings of the interviews and focus groups were transcribed verbatim and checked for accuracy. The data was analysed using a framework by Braun and Clark (2006) that involves it being broken into phases and coded into themes. It was analysed for each individual participant and then across the focus groups.

To begin with the recordings were listened to and the transcripts read several times. Text in the transcripts was colour-coded to begin building subcategories and notes were made. The notes and colour codes were reviewed for similar or opposing ideas to aid conceptual development. Mind maps were also used as a visual aid for the coding and collating into subthemes while searching for meaning and patterns and were

Ward A Ward B

Total deaths/bereaved carers from April 2007–April 2008 39 51

Number within the permitted time window 35 32

Lived outside region 10 5

Declined to be interviewed or could not be contacted 9 6

No known next of kin of the deceased or no contact details 9 14

Carer had had multiple bereavements recently 1 –

Bereaved carer too unwell or had died 1 1

Next of kin was a solicitor – 1

Carers interviewed 5 5

Table 1. Bereaved carer recruitment

Staff participating Ward Numbers per group Length of discussions

Nursing staff of mixed

grades including

registered nurses and

clinical support

workers

A Group 1: two staff

Group 2: three staff

Group 3: three staff

18–25 minutes

B Group 1: eight staff

Group 2: seven staff

41–45 minutes

Table 2. Staff focus groups

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returned to during the development of the subthemes and final themes. For example, emer- gent themes around carers being left to work things out and staff feeling they could not always address information needs merged to form a single theme around valuing and respecting.

All of the participants were offered their transcript to check. This opportunity was taken up by one professional and one carer who were happy for the text to be used.

Findings Analysis across the data revealed five major themes:

● Valuing and respecting ● Dying with dignity ● Balancing the scales of skills and knowledge ● Staff morale ● Follow-up In this paper the reporting and discussion

concentrate on one key theme. Communication was an overarching presence that permeated the five key themes, but it was particularly evident in the theme ‘valuing and respecting’. As this theme was chosen by the participants for the sub- sequent action stages of the study, it is this theme that is reported here.

Valuing and respecting Both carers and staff reported feelings around being valued and respected. Carers reported the need for practical and emotional support and improved communication with staff. Staff recog- nised many of these needs and also identified that they could not always be addressed.

A significant issue for carers was their role once their loved one was admitted to an acute hospital. They reported feeling excluded from care and decision making even though they may have been giving the majority of care to the patient at home prior to admission. The lack of accommodation for families who were spending time in the ward leading up to the death, a practical problem, was also linked to feeling undervalued. The carers were sometimes not aware of an available private space where they could spend time away from the bed- side. Recognition that the carers of dying patients may have practical needs did not appear to be acted on by all staff.

‘People themselves [the nurses] are fantastic ... it’s just the system. Even if there had been an ensuite bathroom. There was just the day room for patients. There was a sink in the [patient’s] room but there was no way I was going to [wash and change]. It was a big lack I thought. I know I wanted time on my own, whenever I

wasn’t in [the patient’s room] I was in the [patient] day room.’ Carer (C) 4

The specialist palliative care professionals identified the importance of the environment and giving the carers time and space. One suggested that sharing the care is necessary and appropriate at times, then went on to say that after the death health professionals should:

‘Get them [the family] some privacy, I know it’s not easy to have time but at least do it in private if you can, often I think people also appreciate some leaflets with practical details in it.’ Palliative care specialist 3

The theme of valuing and respecting was also closely linked to communication issues between staff and carers. Carers said that nurses rarely asked them how they were and how they were coping. Nursing staff reported that communica- tion with carers was to update them on the condition of the patient or give other informa- tion. The carers acknowledged the work of the nurses but revealed how they would like to have been acknowledged in turn. Communication by staff focused on information giving, but carers reported occasions when they felt uninformed. One participant whose husband had died a year previously recalled how she had felt angry about the lack of information in the final stages of her husband’s life:

‘I found that period really hard, and maybe the hospital could have given me a bit more support at that point. You’re faced with your husband in that state, but nobody sort of said: “He won’t get well.”’ C3

Here the carer did not get information about her husband’s condition and this caused distress. The next extract reveals the level of distress expe- rienced by this carer, who was unprepared for her husband’s death in such a short time frame:

‘I was his wife for 17 years, treat me as an adult. It made it difficult for me and I know somebody else may not have wanted to know ... I didn’t expect it to be only 4 weeks [before he died].’ C3

Some carers expected health professionals to raise difficult topics with them and value who they are. This presented challenges for staff who may not have felt confident in raising sensitive issues or may not have recognised that the patient and carer may wish to have as much

❛Carers have a range of practical, financial, and psychological support needs as they deal with the deterioration and impending death of their loved one.❜

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information as possible. Staff acknowledged that some lack the necessary skills to deal with direct and difficult questions:

‘I’ve seen patients maybe trying to ask something about their prognosis and they say ... not blank them off but say ... “Oh no you’re fine, you’re fine”, but they’re not fine, but rather than [have the conversation] ... they sort of hide it from the patient.’ Focus group 2, ward A, staff nurse 1 (FG1 A SN1)

Where carers had experienced hospice and acute care they offered comparisons without being prompted:

‘They [hospice staff] cared for me too, I felt supported and they were honest [about the situ- ation], although we had never really discussed dying.’ C1

The ward nurses demonstrated a more reactive stance in communication:

‘There is a view that you don’t actually go in and have “that conversation” it’s only maybe if you are in the room dealing with the patient that you do try to have a conversation with the relative.’ FG2 A SN1

From a nursing perspective the difficulties in communicating in the ward were linked to the context and events surrounding the situation:

‘You know that you should be putting the time and effort into speaking to relatives but you know you’ve not got the time to do it unfortu- nately ... quite often you don’t know who they are because they haven’t asked to speak to you.’ FG1 A SN1

‘How well the carers have been prepared [for the death] makes a big difference. If they have been sitting [with the patient] for 2 or 3 days and the condition has deteriorated then it’s a different directive. If they haven’t and you have to phone someone suddenly that’s different.’ FG1 A SN1

When one ward nurse was asked whether she felt able to have an honest and open conversation with a carer, she said:

‘I think relatives, although they know what’s happening, can often kind of skirt around it ... or have different names for it rather than just saying direct words such as, “Is my mother

dying?” Because, it seems almost too harsh a word at certain stages, I think for them ... It depends on the relationship I think you’ve got with the relatives ...’ FG3 A SN2

However, use of language was important:

‘It’s not a comfortable conversation for anybody, but I think there are certain people that appreciate you being honest and direct and using the right words. I’ve been involved in a situation where someone had been told that their parent had “passed” or had “left us” and ... I could see the family member thinking “What?” ... and totally didn’t understand that the doctor was trying to say they’ve actually died.’ FG3 A SN2

Some of the participants did not view breaking some aspects of bad news as their role and sub- sequently communication may have been lacking for many carers and patients, as demonstrated by one nurse who had been qualified for over 5 years:

‘Because the family want to hear it from the doctor not the nurses.’ FG1 A SN2

Carers thought that staff in the hospital did their best and were sympathetic to workload issues. Staff recognised that aspects of communi- cation could be improved and this was linked to time, context, education and training. For the nurses who worked in the acute setting commu- nication with carers was in many respects secondary to the physical care and support of patients rather than being a central tenet of it. Ensuring a good and comfortable death was assumed by some staff members to meet the needs of carers and patients. By contrast those working in specialist settings had different resources available to them and the support of carers through excellent communication and involvement was core to the delivery of care.

Discussion This study demonstrated that the carers’ needs were only being partially met in the acute hospi- tal setting. The participants demonstrated the importance of the physical environment to carers dealing with the impending loss of a loved one. Bereaved carers recalled the detail surrounding the time of death, the impact of lack of privacy, and the distress caused by not fully understand- ing what was happening. The environment and its impact on the experience of death for carers were also identified by McIntyre (2002, p95), who reported ‘frequent comments by families

❛Carers reported the need for practical and emotional support and improved communication with staff.❜

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about lack of facilities and private areas for discussions with staff’.

Some carers reported a lack of recognition of their role and their active participation in the illness trajectory. The carers also reported wider communication issues, the existence of which was confirmed by the staff participants. Some of the staff demonstrated a lack of confidence in holding difficult conversations around the end of life and also referred to the ‘busyness’ of the ward as both a barrier and a strategy for avoiding difficult conversations. This echoes the findings of Bushinski and Cummings (2007, p12), who reported that: ‘A crisis may be a reason to post- pone a discussion or may be the impetus to hold the discussion.’ The findings suggest that the diffi- culties are also in part due to contextual issues, including established patterns of working such as shift patterns, which can make it difficult for carers to build trust. Lack of recognition of carers as partners in care by staff and deficits in commu- nication skills may add to anxiety when a difficult conversation is anticipated or required (Docherty et al, 2008; Boucher et al, 2010).

Communication skills are a requirement for all health professionals. In nursing, advanced roles such as the consultant or specialist carry the expectation of appropriate knowledge and skills to hold difficult conversations. Over the past decade there has been a steep increase in the number of specialist palliative care teams across health care (Payne et al, 2008). However, advanced posts remain relatively rare, although clinical nurse specialists continue under a variety of remits (Jack et al, 2003). Furthermore, it is important to consider how the increase in specialist services affects the majority of patients, who do not receive specialist input, and how specialists can increase the skill levels of those working in general and acute settings. Arguably, if an increase in specialist palliative care results in improved care for an increased but overall still small number of dying patients and families, the goals of palliative care based on need rather than diagnosis will not be achieved.

Therefore, ward staff who work directly with patients and carers also require education and training in communication skills. Such education has become common in health care over the past decade, with research by Fallowfield et al (2001), Wilkinson et al (2003), Zapka et al (2006) and others providing evidence for practice and models of communication training. However, difficulties remain in achieving widespread provision and uptake. Some areas have adopted a cascade model (Hayes, 2000; Nuttall, 2008), in which the focus is on participants returning to their workplace

with new knowledge and then formally or informally passing it on to other members of staff. The theory of this model is sensible and resourceful, but putting it into practice remains challenging. Communication beyond the spoken word is crucial, as is understanding that often carers may expect professionals to take the impe- tus in initiating difficult conversations. As in McIntyre (2002), some of the carers identified how simple gestures of support could make a difference to their end-of-life experiences.

According to Costello (2004), the number of patients being admitted and discharged from hospitals has increased in an effort to meet targets to reduce hospital stays. Costello (2004, p6) refers to this as the ‘warehousing’ model of care and suggests that hospital nurses and doctors ‘have created their own cultural practice which influ- ences their behaviour and the way in which death and dying is controlled’. Short and repeated hospital admissions add to the difficulties in establishing relationships on which good communication can be based.

Having historically been aimed at patients with cancer, the palliative care approach is now recommended for all patients diagnosed with a life-limiting condition. This, together with the increasing number of deaths from life-limiting illnesses other than cancer (Sharpe et al, 2005), makes ever more pressing the need for health professionals, particularly nurses, to have a suffi- cient breadth and depth of knowledge of how to support patients and carers at the end of life (DH, 2008; Scottish Government, 2008; DHSSPSNI, 2009).

Strengths and limitations Issues relevant to the size of qualitative samples are common (Polit et al, 2001), and indeed the timescale of the present study and the need to move to the action phase limited the number of participants. Furthermore, had it been foreseen that many of the next of kin would live outside the region of study, an application could have been made for multi-centre ethical consent. Also, lack of funding to release the researcher from her full-time post resulted in the data collection being over a longer period, limiting the time available for the action research phase.

A strength of the research is that it took place following the death of the carers’ loved ones and their contact with health services, which may have allowed the participants to be more honest. Fear of being critical of health care is a well- documented problem in researching patient and carer experiences. In addition, in research by Beck and Konnert (2007) with bereaved adults,

❛Some carers reported a lack of recognition of their role and their active participation in the illness trajectory.❜

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98.1% of the participants felt that bereavement research is worthwhile and 84.4% felt that other bereaved people could benefit from participating. The carers who participated in the study reported here supported this contention, and although a couple of them became tearful they did not wish to terminate the interview.

Relevance to clinical practice Working in partnership with family carers can expand our understanding of what matters to them around the time of death in the acute ward. The involvement of the bereaved in local ward policies as well as managerial strategy could contribute to change where it matters. This might work particularly well if nursing staff are included in local groups targeting communica- tion issues at ward level so that they can hear personally how their actions are interpreted by carers. A dialogue about how to improve support could then follow. To complement this approach, care of the carers should be highlighted in under- graduate programmes for health professionals and standard education of all professionals car- ing for the dying. Furthermore, carers’ support needs must be recognised by quality frameworks and end-of-life strategies aiming to enhance the health-care experience.

Conclusions The present study offers useful insights into what carers value and perceive as respect at the end of life and particularly around the time of death. The findings suggest that interventions to improve the communication skills of staff and to improve the environment could enhance carer experiences. The action research study went on to address these two issues and these findings will be reported in a separate paper.

Acknowledgments Sincere thanks to all who participated in the study. Thanks also to Professor Anne Munro and Professor Diana Woodward, Edinburgh Napier University

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❛The involvement of the bereaved in local ward policies as well as managerial strategy could contribute to change where it matters.❜

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