This paper presents the findings of a study undertaken in 2021–2022 in Midlothian Health and Social Care Partnership in Scotland, funded by the Scottish Government and the Marie Curie Foundation. It aimed to explore ways to capture feedback from bereaved family members and nurses about palliative and end-of-life care (EOLC) delivered by district nursing teams and in a community hospital. The study included a workshop held with staff and family members to reflect on the themes from the data and make recommendations to future care.
Background
Community nursing services across the UK have faced unprecedented pressures both before, during and after the COVID-19 pandemic, including the provision of palliative and EOLC (Mitchell et al, 2021). It has been projected that in Scotland, there will be a 20% increase in the number of people requiring palliative care by 2040 (Finucane et al, 2021), with increasing complexities associated with multi-morbidities, including dementia (Gardiner and Bolton, 2021). There is evidence that, even prior to the pandemic, there has been an increase in the number of people seeking palliative and EOLC in their own homes (Midlov and Lindberg, 2019).
Palliative care is considered by many district nurses to be their preferred and most rewarding area of practice, and that they place particular value on the nurse-patient relationship (Walshe and Lucker, 2010). It is widely recognised that effective communication between healthcare professionals and relatives of patients approaching the EOL is crucial. A systematic review of qualitative evidence on EOL communication recommended further studies to understand experiences of relatives and healthcare professionals in different settings (Anderson et al, 2019).
Aims
The aims of this study were:
- To understand what aspects of care and support were important to bereaved relatives who had experienced the death of their family member at home or in a community hospital setting
- To explore the experiences of nurses delivering EOLC in these settings.
The study was undertaken with four district nursing teams and one in-patient ward in a community hospital.
Methods
The study used experience based co-design (EBCD) (Donetto et al, 2014; Point of Care Foundation, 2023), conducting in-person interviews with family members and discussion sessions and interviews with nurses. As the project involved asking bereaved family members to share significant and highly emotional experiences, it was guided by a set of principles to ensure that this would be carried out sensitively. The study aimed to hear people's whole stories through conversation, using open questions to allow them to share what mattered most (Table 1). Families were given the choice of when, where and how to take part, in line with a trauma-informed approach (Allessi and Khan, 2022). They were also offered the opportunity to participate in a collaborative dissemination workshop to help reflect on findings and identify solutions to issues raised in the study.
Table 1. Interview schedule
| Stage | Sample questions |
|---|---|
| Telling own story in own terms and at own pace |
|
| Reflecting on their experiences |
|
| Other effects on them and their health |
|
| Suggestions for improvement |
|
Recruitment
In line with the ethos of the overall study, a sensitive and personal approach to recruitment was required. The study team met with district nursing and community hospital staff to describe the project and communicate the importance of their role in recruitment. Leaflets were produced for staff to give to bereaved family members, and the study team emphasised the importance of having a conversation with family members in order to explain the project and its purpose. Family members gave consent for initial contact by providing their contact details and specifying the time period during which they would want to be contacted. It was important to give control to the family member regarding the length of time they wanted to wait before being contacted. Family members were able to withdraw from the study at any point. Staff members were recruited through invitation and discussion by District Nursing Team Leads and Community Hospital Nursing Leads, who were members of the Study Advisory Group.
Data collection and analysis
Data collection took place during 2022, which meant that for all family members, at least part of their experience of care had taken place during COVID-19 restrictions. All participants were asked for consent to have the discussion audio-recorded on an encrypted recorder, and recordings were transcribed by an external provider.
Data were analysed by the two study leads, following a process of familiarisation by listening to the audio recordings and reading the transcripts. A key objective of the study was to look beyond the actual events that took place at the end of life, and to identify the impact that particular events or actions had for family members. Data were initially analysed for each participant and quotes that illustrated key events, emotions, and reflections were collated on an Excel spreadsheet. These were then reviewed and collated into themes and verified with the Study Advisory Group.
Workshop
The study findings formed the basis of the collaborative workshop and all family members and staff who had participated were invited to attend. Giving a voice to the families and staff was central to the workshop, and in addition to a traditional presentation of findings, members of the Advisory Group read aloud a number of long, impactful quotes to illustrate each of the four themes.
Governance
This study was commissioned as a quality improvement project to pilot an approach to capturing and using feedback on the experience of EOLC. As it was not undertaken as a research study, ethical approval was not required. However, significant governance processes were put in place, including a data protection impact assessment completed and approved by the Health Board's Information Governance Team. Caldicott approval was obtained for the use of personally identifiable data, which was necessary to hold for the study team to make contact with families and travel to their home addresses to conduct the interviews. All data were held securely in a password-protected shared drive limited to access by the study leads and the Chair and Vice-Chair of the Study Advisory Group.
Findings
A total of 61 people participated in the interviews and focus group discussions, with 25 people taking part in the workshop (Table 2). Of the 19 families that agreed to provide their contact details to the study team, 13 families took part in the interviews, which involved 17 family members in total. Of those who did take part, 10 family members had been cared for by district nursing teams and three had been cared for in the community hospital.
Table 2. Study participants in interviews/focus groups and workshop
| Participants | Interviews/Focus groups | Workshop |
|---|---|---|
| Family members | 17 | 6 |
| Community nurses | 31 | 16 |
| Community hospital staff | 13 | 3 |
The four key themes were identified from people's experiences of receiving or delivering palliative and EOLC, which were linked to the concept of ‘a good death’:
- Relationships and being treated as a whole person
- Being able to make choices
- Getting help when and where it is needed
- Specialist advice and care, especially at the very end of life.
In addition, the concept of time was evident across all four themes. Families recognised different time points: the beginning, when people first learned that their family member had a palliative condition and limited time; the middle, when they received care and support; the very end of life; and then a new time after the death had occurred, which was described by one person as ‘The end of one person's life is the start of another person's changed journey’ (Participant 7). For staff, time meant many things: time to get to know someone; time to spend with them to provide the care and support they needed; and time to do all the little things and big things that mattered.
Theme 1: Relationships and being treated as a whole person
Family members described relationships with nursing teams as being almost like a family relationship, making a positive difference when their loved one received care that was personal to them (Box 1). One participant noted how each staff member brought a sense of normality to an ‘abnormal’ situation. Families described nurses taking time to get to know the person, as well as other family members, speaking to them in a way that made them feel comfortable. Some spoke about being grateful for honest and direct communication, which often made them feel part of the team. When communication was not as good, this had an impact both in the moment but also in the future. Having a strong relationship with family members as well as the patient was seen as being especially important if, as could be the case, the patient was not accepting support or was not able to engage.
Box 1.Importance of relationships and being treated as a whole person in a good death‘We both looked forward to them [community nurses] coming because each of them, they were individuals. While administering dressings or injections or whatever, talking about family or what they did and just talking about normal things. For (my family member) that was just great – (she) didn't want folk coming in and being overly protective or full of platitudes or whatever’.(Family Participant 11) ‘I like that we get to go to people's own homes. They're more relaxed (and) more willing to help you. In the house you see a holistic approach, it's just nice to connect with people. You see the person not the patient. I've always said it's the best job in the world. There's no other place you're going to see the whole person, their living environment, their families, their pets - the things that they'll tell you they'll never tell you when they're sitting in a hospital ward’. (District Nursing Team)
Nurses in both settings recognised that having good relationships meant it was easier to communicate and have more difficult or challenging conversations. Strong relationships enabled them to uphold and respect a person's wishes, as time had been spent understanding what that person wanted, what mattered to them and their motivations. Nurses described the importance of ‘being in the moment’ when being in someone's house, and also acknowledged that working closely in partnership with families could make it emotionally challenging when that person died. Furthermore, when it was not possible to build good relationships with patients and/or their family, staff recognised this could have a negative impact on their own well-being.
Theme 2: Being able to make choices
Family members reported that sometimes, a person's choice may have been to not accept help at all (Box 2). Nurses recognised that many people found it hard to accept the situation and emphasised that respecting decisions was really important, even when they felt this might impact on giving care that would ease symptoms at that point in time. Several family members noticed how skilled the nurses were at supporting people to have choice and control, gently encouraging people to accept help without pushing them too much, which in turn helped maintain the person's dignity.
Box 2.Being able to make choices in a good death ‘(The nurse) was there… for (my family member), for me and for the girls, because he didn't want to have all this medical thing around. She understood from the beginning… how was he feeling with the situation. Just the only thing that they ensured was that we had all the information that we need, but in our own time. Never pressure for anything’. (Family Participant 10). ‘A patient will say ‘I want to stay here’, but you know the family are not going to cope with that. You just have to run with it and sometimes we're ready for the crisis to hit, we have pretty good intuition, we know when people are not going to manage. We look at body language, people verbalising ‘it's ok’ but their body language says otherwise. We are good at pre-empting it and predicting what meds will be needed at the weekend. That takes experience’. (District Nursing Team)
Having their loved ones' choice upheld at their EOL was seen as very important by family members, particularly in relation to where they wanted to die. Some reported that this had impacted positively on their own grieving process. It was also acknowledged, however, that delays in diagnosis and availability of treatment sometimes negatively impacted choice. The restrictions resulting from the COVID-19 pandemic also impacted some of the choices available to people; for example, restrictions people visiting those in in hospital, which also resulted in more patients wishing to be at home at EOL.
The district nursing teams reported that supporting people to die at home was a huge privilege and something that made their job feel valuable. They also recognised that the impact of the pandemic meant that often, patients requiring EOLC came onto their caseload very close to death. This meant it was sometimes difficult to build a therapeutic relationship in such a short time.
Some nurses felt that families could be unprepared for having a loved one at home, and did not know what to expect, which in turn had an impact on their sense of choice and control. The administration of anticipatory care medication could be challenging (particularly at weekends) and highlighted the importance of advanced planning and communicating the availability of nurses to provide care at home, to families.
Theme 3: Getting help when and where it is needed
Families talked about how much they valued being able to pick up the phone and that someone would call them back, with the sense that the nurses were interested in checking that they were ok (Box 3). This was particularly important to families that were at a distance. Being accessible to patients and families was also very important to the nurses; however, they recognised the pressures on their teams, given there is no limit to the number of EOL patients a district nursing team can accept.
Box 3.Getting help when and where needed ‘Every time (one of the nurses) were here they had asked if there was any progress. (We) had initially got an assessment from social work… and the lady that came out… agreed that it was an urgent case and made an urgent referral. But it was (two months later) when we actually had the team leader… of the social care staff, come out to explain things to us… (The nurse) was obviously getting more concerned herself…. and (the nurse) had said, ‘if they can't do something for you, we'll do it’. (When the person from social work came) after discussion, she agreed the care staff would start the next day. (My family member) passed away 9 days later’. (Participant 11) ‘It can be difficult to get medications from local pharmacies at the moment … It's been worse recently, sometimes medications are not available and they don't tell us. There should be better communication about medication supply issues. It's something you don't really want family members to know about, you want it just to go on in the background. You end up thinking you will just go and get the meds yourself but we shouldn't do that’. (District Nursing Team)
The district nursing staff discussed their role in coordinating other services which could be challenging, given that some services (such as a package of care for personal care or obtaining medicines from local pharmacies) often took time to access.
Theme 4: Getting expert advice and care, especially at the very end of life
Families reported that effective and supportive communication at the very end of life was incredibly important (Box 4). When this was handled well, they emphasised that it had left a lasting impact. Poor communication on the other hand often led to distress and mistrust, although if an apology and explanation were given by the service, this then had a positive impact later. Some family members talked in detail about the way nurses guided them through what was happening at the very end of life and that this had been hugely beneficial, allowing them to be present in that moment. Families could recognise when a nurse was confident in giving palliative care and that their knowledge and skills provided great reassurance.
Box 4.Getting expert advice and care, especially at the very end of life ‘Having her there, (nurse), explaining, that was the best thing I could have asked for because otherwise I probably wouldn't have been able to have been there relaxed with him. I might have called the ambulance or doing other things instead of knowing, okay that's it, and relaxing being with him, that was so good.’ (Participant 10) ‘It's a lot of managing loved one's anxieties and worries, then there's the actual clinical nursing side as well, but sometimes that's the biggest challenge. We know what to expect but they don't. Sometimes it's hard to say that that's what we would expect to see, that it's normal, they would say it's absolutely not normal, how can you say that? You don't really want people to say it's normal’. (District Nursing Team)
Staff acknowledged the difficulties in sometimes knowing what to say at the very end of life, particularly how to provide reassurance that some symptoms and movements were ‘normal’. They were very aware that their words could have a lasting impact at this heightened time. More junior nurses said they had benefitted from observing more experienced staff knowing when to ‘pick their moments’ and just be with the person.
While communication between different healthcare teams could sometimes be disjointed, many families reported good coordination between the palliative care specialist nurses, district nurses, the patient and the GP, which made a big impact on their overall experience. For staff, what was important at this time was ccess to appropriate medication, specialist support and advice, and good decision-making about the interventions that were necessary.
Discussion
This study identified four key themes relating to nurses' feelings about delivering EOLC and families' experiences of being supported by nurses during the final stages of their loved one's lives.
The findings emphasise on the concept of time, particularly the pressures of time for the district and community nurses. In a system under pressure, including an increase in the number of patients receiving EOLC at home (Bowers et al, 2021; Mitchell et al, 2021; Mitchell et al, 2022), a key question is how to support healthcare professionals to be ‘in the moment’ with their patients, without worrying about the inevitable time pressures they face. Canning et al (2007) recognised such time pressures but argued that nurses who have highly developed assessment and communication skills are experts at counterbalancing these challenges, something that was clearly evident in this study. More recently, Bowers et al (2021) have highlighted the need for structured education and support for community nurses in both specialist EOL care and communication skills. This study demonstrates that nurses were exhibiting high levels of both these skills and that this should remain a strong element of the preparation and support of nurses coming into such roles.
The importance of building therapeutic relationships in the care of individuals with a life-limiting disease is well-established (Canning et al, 2007; Walshe et al, 2010) and has been demonstrated to enable the establishment and maintenance of a ‘partnership’, characterised by a climate of trust. What was clear in this study was that it was through placing emphasis on developing person-centred relationships that nurses were able to uphold and respect the patient's wishes; this was because time had been spent understanding what that person wanted, what mattered to them and what were their key priorities at this point of their care. The analysis pointed to the qualities and skills that underpin the therapeutic relationship, including skilled communication, respect for autonomy, mutually derived goals of care and shared decision-making.
Being able to make choices and have those choices upheld at the EOL was significant to both families and nurses, and this had an impact on the grieving process after the person had died. The ability to make good choices at the end of life also impacted positively on a patient's dignity and self-respect and there is evidence that increasing control and choices available to a dying person improves the EOL experience and outcomes (NHS England, 2020). Key decisions include a person's preferred place of death, which is considered to be one of the quality markers of EOLC (Ali et al, 2019), with evidence suggesting that where this choice is not discussed, this can lead to more acute hospital admissions. Facilitating choice and control is predicated on the provision of effective information, and this study highlighted the need to develop resources for patients and families that signpost the nature of palliative and EOL services provided in community hospitals and the home setting.
The COVID-19 pandemic had a significant negative impact on patients in hospital where family visits were limited, affecting the development of relationships with staff and the trust needed to enable the best end-of-life care. Mitchell et al (2021) identified an increase in patients choosing to receive EOLC at home during this period, particularly with visiting restrictions in hospital. The use of technology to facilitate communication between nurses, patients and families for those patients that did remain in hospital during this period has been identified as a positive innovation (Mitchell et al, 2022).
This study emphasised the importance of good communication at the very EOL and it was clear that when families experienced specialist expertise and professional communication skills of the nurses, this positively impacted on their experience. In particular, the advice and reassurance on what was happening to their loved ones, allowed family members to relax to some degree and focus on being present with the person. Gardiner et al (2012), emphasise that good communication and partnership working are facilitators for optimum palliative care. This study confirms the risks that can arise where communication is not optimal, with impact on establishing meaningful therapeutic relationships and care delivery, which in turn can affect nurses' job satisfaction and experience of stress. To deliver compassionate, person- and family-centered care, nurses must have the time to focus on delivering this care, and spend time liaising within the wider multi-disciplinary team.
There is recognition that the skill set of district nurses and others who specialise in end-of-life care enhance inter-professional integration, through focusing on proactive communication and co-ordination of care services (Gardiner, 2012; Robinson et al, 2022). This study demonstrated that patients were enabled to die in their preferred place, with effective symptom management and family support. The essential components of this care included access to appropriate anticipatory medication as well as timely specialist support and advice, which enabled effective decision-making.
Conclusion
This study aimed to develop a method of securing feedback to improve EOLC services that were acceptable to participants. The four key themes identified resonated strongly with both families and nursing staff when they came together in a workshop setting to hear the findings. For the nurses, in particular, feedback from the families provided them with affirmation that their focus on building therapeutic relationships and enabling individuals to make a choice in a good death was recognised and appreciated. The feedback from families regarding the need for more specific information resources on what to expect, the range of professionals and services involved, the uplift of equipment after their loved one's death has provided a concrete basis for improvement work.
Key points
- Time was a central theme for patients, families and staff. For families, this included awareness of time moving towards the end of the patient's life and the time families had left with them. For staff, time meant being able to establish relationships and give the patient the best possible end-of-life care experience
- Building therapeutic relationships was the focus for delivering person-centered care and was key to having everyone involved
- Facilitating choice and control meant respecting a patient's right to either accept or decline care, which was seen to impact overall dignity and had a positive impact on the grieving process for families
- Nurses were recognised as providing expert advice and care, with their communication skills being central to offering families reassurance and support that enabled them to be with the person at the end of their life.
CPD reflective questions
- Consider your own experiences of palliative care within the community setting. Do you feel that you have the support network, skills and knowledge to make reasonable interventions? If not, how can this be improved?
- What palliative resources are available to patients and families in your local area? Are these adequate and how could they potentially be improved?
- Consider your own and colleagues' communication styles while working with patients and families. What do you do well and what can you learn from others?
- With the increasing emphasis of care moving into the community setting, can you think of any specific interventions to support this in the current financial climate with the pressures on the nursing workforce?