Palliative and end-of-life care (PEOLC) is holistic care delivered during the last year of life that aims to maintain patient comfort and relieve suffering and support illness management (Sam et al, 2011). According to Government and clinical guidance (Leadership Alliance for the Care of Dying People, 2014; NHS, 2014; National Institute for Health and Care Excellence (NICE), 2017), the priority is for people receiving PEOLC to be involved in that care, with services being person-centred, available day and night, and supporting expressed preferences, particularly regarding place of death (King et al, 2004; O'Brien and Jack, 2010). Recommendations also call for greater quality and integration of PEOLC provision (Institute for Public Policy Research (IPPR), 2018).
A Dying Matters survey (2015) reported that 70% of people prefer to die at home, although around 46% currently die in hospital (National End-of-life Care Intelligence Network, 2018), suggesting that more could be done to support patients to die at home. The number of people dying at home in the UK has increased recently due to the COVID-19 pandemic (Bowers et al, 2020), with figures showing above 5-year average figures (Office for National Statistics, 2020). However, dying at home is only preferred when families are well-supported and pain can be managed (Robinson et al, 2016). People wishing to die at home need access to a range of specialist care services, such as palliative and district nurse (DN) care, Marie Curie night sitters, doctor visits and family care provision (Gomes et al, 2015). While the literature identifies benefits to home-based PEOLC, through meeting patient and family's needs and preferences of care and in cost savings (McCaffrey et al, 2013), there is inadequate evidence of its impact on hospital admissions and preferred place of death (Palliative and End-of-life Care Priority Setting Partnership (PECPSP), 2015). The possibility of dying at home is improved by access to domiciliary care and medical equipment and should result in a reduction in inappropriate use of hospital beds (Gomes et al, 2015). Community-based PEOLC may reduce the number of unplanned hospital admissions and emergency department visits, thereby satisfying people's preferences and improving quality of death (Sutradhar et al, 2017; Wright et al, 2018).
This article reports on a charitable hospice-at-home organisation in the south of England that provides specialist care for patients diagnosed with life-limiting illnesses and their families. Through the 24/7 hospice-at-home service, patients can choose to receive practical nursing care at home, advice and help to control symptoms, with the aim of avoiding hospital admissions. Initial overnight contact is by telephone, when a nurse will assess the call to determine the best course of action. There is a well-established relationship with the hospice night team and DNs, as the localities served have an overnight DN service. At the beginning of each night, the night team will flag any potential challenges and, if the hospice team is with a patient when they receive another call, they can liaise with the DNs to ensure patients/families receive appropriate input.
The hospice evaluated its night service to identify its impact on patients and/or family carers. Key aims were to identify whether and how the night service supported people's wishes to remain at home and explored staff and family carer perceptions of this service on hospital admissions.
Methods
The evaluation was carried out between July and December 2016, using a mixed-methods approach (Creswell and Creswell, 2018). This paper presents the qualitative findings from family carer and staff interviews to investigate their perceptions of care delivery and impact on patients' ability to remain at home and avoid hospital admissions.
Family carer perspective
Face-to-face semi-structured interviews were conducted with a purposive sample of family carers (n=20). Participants were identified from patient records to ascertain patients who had contacted the night service during the data collection period; consented to take part in the research and were not deemed vulnerable by their care team (Table 1). Participants were recruited and interviewed by hospice staff/volunteers who had no direct involvement with the provision of care. As peer researchers, the interviewers had service knowledge and were sensitive to the situations encountered in PEOLC. They were trained in research methods by two members of the research team who were experienced in conducting research with seldom-heard groups. Regular support was provided during data collection to ensure consistency in approach and manage any issues (Table 1).
Table 1. Demographic characteristics of current family carers (n=20)
| Gender | |
|---|---|
| Male | 9 |
| Female | 11 |
| Relationship to patient | |
| Parent | 4 |
| Spouse | 15 |
| Unknown | 1 |
| Hospitalised when receiving care with the hospice | |
| Yes | 8 |
| No | 12 |
| Type of contact with the hospice | |
| Telephone and visit contact | 20 |
Semi-structured telephone interviews were also carried out to explore the views of former family carers whose family member had died in the past 12 months. Participants were recruited via a questionnaire, which was sent to 268 English-speaking family carers, and 84 completed questionnaires were returned. Participants were invited to a follow-up interview for a more in-depth exploration of their experiences. Following expression of interest from participants, 18 interviews were conducted by experienced university researchers and audio-recorded (Table 2).
Table 2. Demographic characteristics of former family carers (n=18)
| Gender | |
|---|---|
| Male | 5 |
| Female | 13 |
| Relationship to patient | |
| Parent | 4 |
| Spouse | 12 |
| Child/other family member | 2 |
| Hospitalised when receiving care with the hospice | |
| Yes | 2 |
| No | 16 |
| Type of contact with the hospice Telephone and visit contact | 18 |
Staff perspectives
Face-to-face and telephone interviews were conducted with a convenience sample of staff members, depending on availability. All staff working with or in the night service were invited to participate, and nine agreed (Table 3). Interviews were conducted by experienced university researchers and audio-recorded.
Table 3. Demographic characteristics of staff members (n=9)
| Gender | |
|---|---|
| Male | 1 |
| Female | 8 |
| Staff roles in hospice * | |
| Night staff (nursing and healthcare assistant) | 7 |
| Nurse (day staff) | 51 |
| Healthcare assistant (day staff) | 8 |
| Staff roles participating in interview | |
| Night staff (nursing and healthcare assistant) | 3 |
| Nurse (day staff) | 5 |
| Healthcare assistant (day staff) | 1 |
Data analysis
Interviews were transcribed verbatim, anonymised and subject to thematic analysis, using Braun and Clark's (2006) six-step framework of familiarisation, generation of initial codes and identification and refining and naming of themes. Initial analysis was undertaken by the research team to identify potential themes, which were then co-analysed with hospice staff and volunteers via two workshops, ensuring that staff's tacit/contextual knowledge was included.
Ethics approval
Ethics approval was obtained from the relevant faculty ethics committee at the university conducting the research (REF: RGHaHC-04.05.2016), and governance approval was gained from the hospice. Participants volunteered to participate, after receiving complete information regarding the study. Written and/or verbal consent was obtained for all interviews.
Results
The impact of the overnight PEOLC service and its effect on care decisions was discussed from the aspect of fulfilling patients' wishes, appropriateness of hospital admissions, brokerage between services and future care planning. Verbatim quotations are included, with a code for the interviewer, interview number and whom the quotation is from.
Balancing needs, expectations and wishes
The night service needed to strike a balance in meeting carer expectations and desires to maintain normalcy at home, as well as supporting a sense of patient personhood until death. Family carers reported that the service was important in guiding them through decision-making and helping to meet patient's wishes to remain at home with ‘all the benefits of the nursing profession in [our] own home’ (former carer, AW9).
‘That was our biggest anxiety, to make sure that he [patient] didn't go to hospital, and the (night) service made it possible for that not to happen.’
(former carer, AW01)
‘What I experience from the [service] nurses is an empathy with the person in the situation that they're in, with the suffering that they're in and obviously a very specialised knowledge in the drugs and the pain.’
(carer, HB02)
Family carers admitted that home care was challenging, involving a ‘huge learning curve’ about medical conditions and managing the emotional complexities of the caring role. However, meeting the patient's wishes was important in simultaneously relieving family carer difficulties. Therefore, a balance was needed between managing carer and patient needs. Having access to the night service was reported as vital to achieving this and providing the most appropriate care, while also helping to reduce worries associated with home care.
‘We needed to be equipped with as much information, as we needed to get through the night, which I think we were able to do, and called on that night service when we felt that we were out of our depth.’
(former carer, AW01)
‘She had a syringe driver put in, and for some reason, two nights on the trot, the syringe driver stopped working. So, sort of like, you know, midnight, I was having to sort of phone up …’
(carer, RA05)
The challenge for staff was, in part, focused on dealing with family carer concerns, which were often heightened at night. Both staff and family carers described how, for carers, a sense of helplessness could pervade the night-time hours, which were said to pass slowly, and access to daytime services seemed far away.
‘The night is, from a carer's perspective, a gloomy period, because you don't have the normal resources to call upon.’
(carer, HB03)
‘It was lovely to just know somebody was at the end of the telephone, at the, you know, the darkest hours of the night when you think there's nobody around, everything's shut, you can't get help from anywhere, other than an ambulance, which [patient] didn't want … and it's quiet too, you hear [patient's] breathing more, you hear, you know, stuff that you wouldn't normally take any notice of, that you would just pass it by during the day. It's not as stressful in daylight hours.’
(former carer, AW03)
Staff reported that a key strength of the service was its ability to manage patient or carer concerns, offer reassurances and information or advice that could reduce worries and relieve symptoms. This offered a safety net and helped carers through these feelings. Staff felt they were reducing the impact of difficult circumstances that could exacerbate stress and carer burnout.
‘I think [the night service is] adding comfort to the family, that there is somebody there they can talk to and give them that reassurance.’
(manager, JS07)
‘It's about managing expectations, talking people through, just getting them to be calm and just reassuring them, because I think we forget what a responsibility it feels like having someone at home who's dying. For them, it feels like it's all on them, they're on their own.’
(day nurse, JS03)
A final balance that family carers faced was in deciding when to contact other services overnight. When prompted, carers (n=14) suggested they would contact the NHS emergency helplines (999/111), district nurses, the out-of-hours doctor, local hospital or Macmillan services as an alternative to the overnight hospice service. However, some family carers reported this as a ‘last resort’, fearing a hospital admission or lengthy conversations describing the patient's condition to someone with no prior knowledge. Families felt this could be distressing and disruptive. For these family carers, the overnight hospice service provided an alternative to calling on the emergency services, and it was perceived to have a more direct connection to other services.
‘I rang the 111 number, and they tend to send an ambulance out anyway, but with the [service], there was a situation. Then, when I rang, and they felt perhaps a doctor should come, and the doctor came straightaway; it was under an hour, where with the 111, it was a bit more long-winded.’
(carer, SD02)
Appropriateness of hospital admissions
Family carers and staff acknowledged that some hospital admissions were necessary, providing accounts of admissions that were perceived to be in the best interest of the patient's comfort, or resulted from a deterioration in their condition:
‘I'd had to phone 999 sometime before, because then he had to go into hospital with pneumonia.’
(carer, RF03)
‘I've taken her [patient] to A&E. That's been temperature related because with the cancer, when you get to 38 degrees, then it's a trigger point … so I've had an ambulance out.’
(carer, HP03)
Family carers reported that night service staff sometimes recommended calling an ambulance after assessing the patient's condition, viewing it in the patient's best interest. This resulted in an extended hospital stay for one patient, while another required a drip for extreme dehydration. Staff spoke of the complexities of illness at the end of life and how conditions can change quickly and may require specialist medical attention which could not be provided at home, for example, specific cancer symptoms. Carers perceived the night service to offer a flexible approach, which could contribute to emergency service referrals, including the out-of-hours doctor and in-patient hospices.
Mediation between families and services
There was a sense that staff, patients and carers needed to work together to ensure that patients' wishes could be managed. One carer explained the complexities of navigating between services and accessing medication as follows:
‘You get blockages all the time between the [GP], between the nursing service, between chemists, you know, even getting prescriptions, you end up … you've got to go to the doctors to get the prescription, then you've got to find a chemist that has all these drugs, and often they don't, so you've got to wait for the next day.’
(former carer, AW02)
However, family carers acknowledged the close links the night service had with other services and valued its ability to navigate the complex health and social care systems on their behalf, ensuring that timely care was provided:
‘And in the morning, [nurse] came with a doctor because, obviously, they'd had the report back about the night, and they gave [patient] an injection and he slept most of the morning.’
(carer, HB03)
Such brokerage by hospice staff related to managing and negotiating expectations. A staff member explained that families should be involved in the care decisions if inappropriate admissions are to be avoided.
‘It's important that the patient and the family are involved in the conversations about hospital admission. I think maybe inappropriate admissions would be more because it's carer breakdown potentially, or not having lay carers in place to help support care packages. Sometimes, patients' families cannot cope, no matter what support is put in. Sometimes, that can go against what the patient wishes, so you try and broker that and talk it through and put in whatever support you can.’
(day nurse, JS03)
Future care planning
The hospice works with patients and families enabling them to plan PEOLC; such planning was reported to be fluid, flexible and renegotiated as changes were experienced by patients and families. Staff reported that access to services influenced decisions of where to die and that hospices, rather than hospitals, may provide more suitable care than the ‘at home’ service.
The need for conversations around PEOLC plans and ‘do not resuscitate’ orders were highlighted by staff. These were said to aid hospital avoidance, help families make informed choices and allow staff to ensure the necessary paperwork was in order, enabling patient's wishes to be fulfilled. Staff identified that navigation through complex care pathways is not always straightforward, especially when the patient's and family's wishes differ or change. The role of the night team was to action these plans when a crisis occurred overnight.
‘The patient who we're supporting well at home, who we've planned and thought about, so we've got the ‘just in case medications' in, [and] do not resuscitate, we've had the conversation about where do you want to be and then they hit a crisis, I think the night staff are invaluable there because they'll help us keep that plan in place.’
(clinical nurse specialist, JS01)
Discussion
This evaluation has contributed to knowledge on home PEOLC, expanding on what it means to provide this care, together with evidence that hospital admissions were perceived, by both family carers and staff, to be preventable with the support of an overnight nursing service. However, it was acknowledged that some hospital admissions are clearly necessary and appropriate regardless of overnight care provision. This study also developed an understanding of the ways in which a dedicated overnight service can support home-based PEOLC.
The night service supported patients' sense of personhood and choice to die at home, enabling as good a quality of life as possible before death, which is something many value at the end of life (Pollock, 2015). An overnight service can mitigate the potentially negative perceptions about dying at home, that is, it can be lonely, painful and distressing (Pollock, 2015). The night service recognised that caring for someone dying at home requires considerable emotional labour and that joint support for the patient and family carers is invaluable in relieving that sense of loneliness, which is often worse at night. Unexpected hospital admission may be more likely to occur out-of-hours because of the increased anxiety in these hours that timely care cannot be obtained (King et al, 2004). A lack of out-of-hours services is a major factor that can result in hospital admission during the last days of life (O'Brien and Jack, 2010). Additionally, carer anxiety can be reduced with out-of-hours provision and good communication (King et al, 2004; Aparicio et al, 2017; Hutchinson and Van Wissen, 2017), particularly if services know about the patient prior to a visit or have medication available out-of-hours (King et al, 2004). The complexity of PEOLC and the potentially rapid changes in the patient's condition that may occur can challenge community care, which can be perceived as not being responsive (Robinson et al, 2015). However, the findings of this study would suggest that a dedicated 24/7 service can be responsive to these challenges, particularly those surrounding reducing anxieties and carer burden.
An aspect that emerged from this study was the potential for carers and patients to be hesitant in calling overnight services, initially (Sixsmith et al, 2017). Access to care and support overnight can minimise unnecessary hospital admissions and be integral to symptom management. Services, such as hospice-at-home outreach services or community/district nursing, need to provide greater assurance to patients that calling a service overnight is an appropriate and welcomed response to relieve patient or carer distress and perhaps emergency calls.
Studies suggest a greater likelihood of high levels of carer burden when caring at home until death, and this has a greater chance of resulting in carer depression, stress, isolation and health problems (Jack et al, 2016; Horsfall et al, 2017). Carer burden may result in unnecessary hospital admissions (King et al, 2004), suggesting that out-of-hours PEOLC services should work to minimise carer burden and consequently minimise unnecessary hospital admissions (Aparicio et al, 2017). Staff from this study identified that this as an essential part of their service, and they felt that carer burden could be mitigated with open discussions to keep family members informed of what impact home care could have. Involvement in care and decision-making is an important aspect of care provision, ensuring that families understand how an individual's condition may progress (Department of Health (DH), 2008). Such conversations have previously been considered challenging in the hospital environment (Robinson et al, 2014). As such, it is recommended that the provision of a quality at-home service should enable these conversations to become more integrated in the care process, with all care providers involved, to maximise consistency across services. It is also recommended that services reinforce the message that day or night calls for emotional support are an important and relevant part of PEOLC.
Part of these discussions involve talking about ACP and having relevant paperwork and care decisions in place. Another part is to ensure timely and effective symptom management and use of medication at the end of life (Bowers and While, 2019). Symptom relief was cited as a key factor of care and support for the overnight service and included in ACP with the provision of ‘just-in-case drugs’ and anticipatory prescribing, which enabled staff to meet the needs of patients out-of-hours. The IPPR report on PEOLC (2018) recommended holding conversations about death and dying with families. These conversations need to occur early following the diagnosis, to adequately meet patient's wishes, particularly as a patient's condition can change suddenly and need action. Conversations around PEOLC are crucial so that ACP is put in place (Wilson and Birch, 2017) and anticipatory prescribing can be considered that meets the patient's preferences (Bowers and While, 2019). Government and clinical guidance (NHS, 2014; Royal College of Physicians (RCP), 2016) advocate for PEOLC planning to ensure that people can express choices of where and how they want to die, so that services are aware of refusal of treatment, for example. Part of these conversations are an understanding of the potential progression of symptoms to inform decisions on symptom management and use of medication (Bowers and While, 2019). These conversations can also be aided by carer understanding and knowledge of PEOLC and what it means to care for someone at home. Families reported on the learning curve regarding PEOLC, often through experiencing different situations dealing with medication management, and on the support received from staff, who included nurse prescribers and/or close liaisons with GPs or DNs. There is potential to develop further understanding of how carers can be supported, and training could be offered to support home care. Another factor in the improved provision of care is the use of ‘just-in-case’ medication, which is invaluable for out-of-hours use. The night team has a nurse prescriber and, as the hospice is a nurse-led organisation, plans include increasing the number of nurse prescribers to allow for reactive as well as proactive care. Adding nurse prescribers may also alleviate the pressure on DN prescribers or out-of-hours doctors.
This is also important for inter-professional working, as systems and processes may differ, resulting in tensions in care decisions (Keane et al, 2017). Brettell et al's (2018) review of out-of-hours primary care end-of-life contacts reported on the pressure these differences can put on doctors' services. Therefore, a collaborative, multi-stakeholder approach to PEOLC care can provide a more efficient and holistic way to treat patients and meet their needs, as well as reducing the potential burden on other, already-stretched services.
Limitations
Using peer researchers could have impacted on the experiences that the participants shared. However, peer researchers can aid research undertaking, eliciting insights through tacit knowledge and experience, which enhances data collection; with appropriate training and ongoing support, they can be an asset (Lushey and Munro, 2014). Thus, the peer researchers in this study were trained to ensure rigour in data collection/analysis.
Conclusion
PEOLC involves a complex interplay of different services to support a range of physical, psychological and social needs across a range of settings. A home-based night service can enhance the quality of care, preventing calls to the emergency services through provision of support for patients and families in alleviating their anxieties and sense of loneliness at night, and provision of appropriate care and treatment. However, there are occasions where care needs can only be met in hospital, regardless of the availability of community care. A clear recognition of the synergy between community and acute care is, therefore, required to support decision-making and ensure staff are sufficiently skilled to support patients and their families out-of-hours.
The emotional labour experienced by carers supporting someone to die at home was recognised as being especially difficult to address at night when worries magnify and service support is less available. However, with day- and nighttime support, carer and patient wishes to die at home can be fulfilled. This is noteworthy, as patients and families who live in localities without home-based night services may be disadvantaged. Such worries can be alleviated through phone support or, increasingly, on video-conferencing platforms (as the COVID-19 pandemic has highlighted), and as such, NHS in localities without hospice-at-home nighttime outreach support should be encouraged to develop accessible day and night remote support.
Communication between out-of-hours services, patients and carers and other health and social care providers is essential in supporting people to die at home. The challenge arises in how best to support communication between different PEOLC services, so that they can best support people who wish to be cared for in the community. This study found that only through open and sometimes difficult discussions, and a skilled and confident staff, can patients' needs be met.
KEY POINTS
- A night service aimed at supporting people at the end of life or receiving palliative care can prevent unnecessary calls to emergency services
- An out-of-hours service can provide support for patients and families in alleviating their anxieties and sense of loneliness at night
- Carers who support someone to die at home experience emotional labour, and, with support, the wishes of both the carer and patient can be fulfilled
- Communication among stakeholders is essential to supporting people to die at home and avoid unnecessary admissions
CPD REFLECTIVE QUESTIONS
- How can the communication between end-of-life care services be improved to support people who wish to be cared for in the community?
- What might cause anxiety for family members providing care for a person at the end of life at night?
- What occasions or health issues at the end of life might result in a necessary stay in hospital or emergency call-out?