551813 research-article2014

PMJ0010.1177/0269216314551813Palliative MedicineGriffiths et al.

Original Article

Breaking bad news about transitions to dying: A qualitative exploration of the role of the District Nurse

Palliative Medicine 1­–9 © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216314551813 pmj.sagepub.com

Jane Griffiths1, Gail Ewing2, Charlotte Wilson3, Michael Connolly4 and Gunn Grande1

Abstract Background: UK District Nurses have an important role in enabling a good death. Patients and families need to know the patient is approaching the dying phase, yet evidence suggests breaking bad news about the patient’s transition to dying rarely happens. District Nurses spend a lot of time with patients and families during the dying phase and are ideally placed to recognise and discuss the transition to dying. Aim: To explore the role of District Nurses in breaking bad news of transition to dying. Design: Qualitative focus groups. Setting: Primary care (District Nurse service); Four National Health Service Trusts, North West England. Participants: A total of 40 District Nurses across the Trusts, all Registered General Nurse qualified. Median number of years as a District Nurse was 12.5. All had palliative cancer patients on their caseloads. Results: District Nurses’ role in breaking bad news of transition to dying was challenging, but the conversation was described as essential preparation for a good death. Four main challenges with the conversations were patients’ responses to the prognosis (unawareness, denial and anger), timing the conversation, complexities of the home environment and limited preparation in this aspect of their work. Conclusions: District Nurses are with patients during their last weeks of life. While other colleagues can avoid breaking bad news of transition to dying, District Nurses have no choice if they are to provide optimal end of life care. While ideally placed to carry out this work, it is complex and they are unprepared for it. They urgently need carefully tailored training in this aspect of their work, to enable them to provide optimal end of life care.

What is already known about the topic? •• Much of the preparation for a good death happens at home, under the care of District Nurses. •• To prepare for a good death, patients and loved ones need to be aware that the patient is approaching the dying phase. •• While bad news about diagnosis and prognosis is often broken early in the disease trajectory, breaking bad news about transition to dying rarely happens. What this paper adds? •• District Nurses frequently break bad news of the patient’s transition to dying.

1School

of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK 2Centre for Family Research, University of Cambridge, Cambridge, UK 3Barts & The London School of Medicine Centre for Primarly care and Public Health, London, UK

4Supportive

and Palliative Care, University Hospital of South Manchester NHS Foundation Trust, Manchester, UK Corresponding author: Jane Griffiths, School of Nursing, Midwifery and Social Work, University of Manchester, Jean McFarlane Building, Oxford Road, Manchester M13 9PL, UK. Email:[email protected]

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Palliative Medicine •• This work is complex due to the context of the home, and presents many challenges. •• District Nurses receive little to no training in this work.

Implications for practice, theory or policy •• The conceptualisation of breaking bad news needs to be widened to include supporting patients through the transition to dying within the home context. •• Models of breaking bad news need to be revised to incorporate this new understanding. •• District Nurses need carefully tailored training in this work.

Introduction In the United Kingdom, palliative cancer patients spend most of their final year at home, normally the preferred place of care and death. Much preparation for a good death happens at home. District Nurses (DNs)1 visit for extended periods of time during cancer patients’ palliative and dying phases to support them and their families,2–5 and have an important role in enabling as good a death as possible, whether at hospital or home. DNs are community nurses employed by the National Health Service via National Health Service (NHS) trusts and work with General Practitioners (GPs) to care for patients at home. All are Registered General Nurses (RGNs) and have the title DN, but not all hold a District Nursing qualification. There is reasonable consensus in the literature on a ‘good death’. While it is important to recognise that components vary from person to person and cannot be neatly ‘boxed’,6,7 there is agreement that patients wish to be treated as individuals with dignity and respect, without pain and other symptoms, in familiar surroundings and in the company of close family and/or friends.8 Social and spiritual care are recognised to be as, if not more important, than physical care,1 and it is agreed that preparations for a good death need to happen weeks and months before death,9 rather than the last few days. To make preparations for a ‘good death’, patients and loved ones need to know that they are approaching the dying phase. In the United Kingdom, assumptions are often made that someone, such as the consultant or GP, has broken news about the patient’s transition to dying. Evidence suggests however that while conversations about diagnosis and prognosis happen early in the disease trajectory, conversations at the end of life about transition to the dying phase rarely happen,5,10 leaving others, or possibly no one, to pick up this task. As DNs typically spend more time with patients and families during the palliative phase than any other colleague,11 they are ideally placed to both recognise when the transition to dying has occurred and convey this to the patient and family. Most of the literature on breaking bad news however focuses on the point at which bad news (usually diagnosis) is delivered by a doctor. Yet, there is

growing evidence that assimilation of bad news is slow and incremental12 and nurses have a role in the process of breaking bad news over time. For example, in the acute setting, Morrissey13 described nurses translating bad news for patients, and more recently, Warnock et al.14 found nurses involved at many stages such as preparing patients for bad news, being present when the doctor broke the news and providing patients/relatives with support and opportunities to talk following the conversation. Little is known however about the DN’s role in breaking bad news in the community setting as part of a process that culminates in breaking news of the transition to dying. This article presents findings from a study of DNs’ support of palliative cancer patients,15 which explores the role of the DN in breaking bad news of transition to dying. The larger study piloted a communication skills model with DNs (SAGE & THYME) that helps practitioners hear distressed patients’ concerns and engage them in simple problem solving. In focus groups held before training in the model, DNs were asked general questions about their experiences of supporting cancer patients. While they reported challenges with talking to distressed patients – which SAGE & THYME is designed to address – more prominent was the difficulty with breaking news about the transition to dying, which SAGE & THYME does not cover. They identified the need for additional training in this respect. We present data on the role and preparation of DNs in breaking bad news to patients/carers entering the dying phase and the challenges they face.

Method Qualitative focus group methodology was used to explore the views of DNs.

Ethical considerations Ethical approval was granted by the National Research Ethics Service (NRES: Reference 11/NW/0525). The main consideration was distress to participants when recalling incidents where psychological care had been difficult. Time

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Griffiths et al. was allowed to de-brief after focus groups but in the event was not needed.

Sample A total of 40 DNs were purposively sampled from three inner city and one suburban Trust in North West England by their DN leads. Inclusion criteria were working in the DN service, RGN qualified and one/more patients with cancer on their caseload. All DNs were RGN qualified. Eight held the DN qualification, and one was a student on the DN course. Median years worked as a DN was 12.5. Team caseloads varied from 150 to 600 depending on the size of the team. Mean daily visits were 12. Patients on the caseload with cancer varied from 75 to 200, which again reflected the size of the team. With the exception of one nurse, none had received communication skills training.

Data collection Four focus groups were conducted by J.G. and C.W. (experienced qualitative researchers), between November and December 2011 with 10 DNs in each. The reason for conducting the research was fully explained. A topic guide was used (Figure 1) to facilitate discussion about supporting cancer patients, and any challenges or difficulties with this work. Focus groups were 45–60 min duration and digitally recorded. Information packs were sent to participants 4 weeks before the focus groups and consent was obtained before the interview. The researchers observed group dynamics and encouraged participation from all participants.16 Brief field notes recorded group dynamics.

Analysis Recordings were transcribed verbatim and uploaded into NVivo™ to facilitate coding and thematic content analysis. Data analysis was concurrent with data collection allowing constant comparative analysis.17 Data were read and coded independently by C.W. and J.G. Written summaries were presented to the Steering Group who discussed themes, rival explanations and agreed on an interpretation of the study findings.

Findings DNs visited some palliative cancer patients for months, sometimes years, before they died, supporting, monitoring and getting to know them before the dying phase. Other patients were referred late in the disease trajectory when death was imminent. There was unanimous agreement that a ‘good’ home death was contingent upon preparations such as discussion about resuscitation, anticipatory medication for adequate symptom relief, equipment such as hoists and commodes, discussions about preferred place of

care and death, saying goodbye to loved ones and preparing children. The DNs agreed that preparations were only possible if there was awareness that death was approaching, and that breaking bad news about the transition to dying was frequently the DN’s role because they spent a lot of time with patients and families, knew them well and would be caring for them until the end of life. DNs found breaking this bad news one of the most challenging aspects of end of life care. Reasons fell into four categories. The first encompassed individual and/or families responses to the prognosis: unawareness, denial and anger. The second concerned timing of the conversation, which was considered critical. The third comprised contextual factors affecting DNs’ ability/willingness to discuss impending death. The fourth was lack of preparation for breaking bad news.

Responses to prognosis Unawareness.  DNs described awareness of prognosis as an antecedent to conversations about preparations for dying. Patients and families were frequently unaware, however, for a number of reasons, many of which resonate with Glaser and Strauss’18 seminal work on Awareness Contexts. Some hospital consultants reportedly failed to ensure patients and carers understood the prognosis. Poor communication was sometimes about the cancer diagnosis itself: ‘They don’t say cancer do they? So patients think well he’s not said that word’ (FG4). More commonly, however, patients believed they were either ‘cured’ or this was still the intention. Sometimes, this was because patients were on drug trials until the end of life with apparently curative intent. On other occasions, use of evasive language or ‘terminology’ implied cure: DN1:  And, then the consultant tells them when they’ve had their breast off, they’ve had the chemo for breast cancer and say, you’re cured now, what they mean is, we’ll see you in two years time and we’ll do another and, then, it comes back and they said, but, they said it was cured and you think, I wish they wouldn’t use those terms [agreement from the group] DN2:  Because, when people say cured, they think they’re cured [agreement from the group] DN3: Hospital Y are buggers for doing that. DN1: Yeah. And, I don’t know if it’s because they can’t see all those people that they’re looking after and they have to get them off somehow, but, it’s the terminology that gives people false hope and, I think, that’s quite cruel Focus group 3

In other cases, the carer was aware of both the diagnosis and prognosis, but the patient appeared to be unaware because information had been kept from them, and the

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Pre-training focus group to discuss experiences and challenges of providing psychological support to cancer patients at home, and the potential utility of SAGE & THYME Do you carry out support visits to palliative care cancer patients? How do you support these patients? o What do you do during these visits? In what circumstances would you provide psychological support to cancer patients with palliative care needs? o Can you give us an example from your practice? Can you tell us a bit more about how you provide this support? o If someone was upset what sort of questions would you ask them? Can you talk about any circumstances under which you would not provide psychological support to someone who was upset? o Why would this be? Can you given an example from practice? Could you discuss any challenges to providing psychological support to someone who is upset? • When is it difficult? • Are there particular situations you find challenging? • What is it about these situations that are particularly difficult? Our previous research suggests that District Nurses lack time to discuss psychological concerns with patients. o What are you experiences? Our research also suggested that District Nurses sometimes lack confidence in providing psychological support. o What are your experiences and thoughts on this? o How confident are you about your communication skills? We will briefly describe a communication skills tool to you (describe SAGE & THYME) Do you think SAGE & THYME could be potentially useful in your work with palliative patients?

Figure 1.  Focus group topic guide.

carer wished it to remain that way. This was difficult for the DNs:

and reflect a pervasive discomfort across many societies about discussing death and dying.20–22

The wife comes in and she’ll say, ‘don’t mention it’ and she’s sat behind him. Every word you say you’re treading on eggshells aren’t you?

The reverse also happened sometimes, however, where the patient knew what was happening but attempted to protect the family. Again, preparations for dying were difficult. One of the DNs (FG1) described how a patient had withheld information from her husband and children ‘And I walk into this massive crisis and you think, you know, where do I start?’ The DN spent 2 hours persuading the patient to tell the husband, which she eventually did, but she died 2 days later before the children were told. A colleague in the same focus group agreed, describing another example and the personal impact of this: ‘My colleague spent, again, two hours … trying to sow the seeds with a family that their mum was dying and it was absolutely emotionally draining and I spoke to you [another colleague] and we were both drained’.

Focus group 4

Although some patients appeared to be unaware, many were reported to be ‘suspicious’18 as in the next extract. This could be even more difficult to manage. In this example, the situation was further complicated by consultants who reportedly colluded with the carer’s wishes to ‘protect’ the patient: The worst scenario is, for me, the patient you are nursing is not aware. The relatives ask the consultant not to tell them to protect them, and they never come to terms with the pain, the symptoms, they don’t know what’s going on but really they do, they’re asking you these questions but you’ve been told – and then it’s just barriers every which way, it’s a nightmare. Focus group 3

Consultants censoring information and using vague language are echoed in a review by Fallowfield and Jenkins,19

Denial. Closely related to lack of awareness, but more complex to manage, was denial about prognosis.18 DNs reported that when patients used denial as a coping strategy, conversations about transition to dying were considered not only difficult but probably inappropriate. Denial was reported to be common:

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Griffiths et al. DN1: A lot of patients are in denial as well DN2: Yeah, it’s true that DN1: And I can understand it, it’s a shock Focus group 3

DN2: We’ve had that, we’ve found it really hard to deal with DN3: Because really you want to do something [with] the limited time they’ve got left’ Focus group 3

DNs reported that denial was particularly prevalent when patients were young. This was also difficult for the nurses: I don’t know how everyone else is, but the last five patients that have died with us, the older ones have been more philosophical about it but the young ones with children, who are our age, have really resisted the nurses coming in and helping, they’re really … emotionally suffering … If they don’t have a nurse, they’re not going to die – it’s been really difficult, especially when they’ve left two year olds and three year olds [agreement from the group] Focus group 4

DNs reported that if denial was not addressed, the consequences were usually deleterious for the patient and family: knowledge and being in control are recognised antecedents of a good death.23,24 A further example was when patients entered repeated drug trials hoping for a cure: They come off the trial and they’re going on another trial … and they were that ill with the chemo they never spent any time with the family, they were just lying in bed vomiting everywhere and losing their hair and they’ve only got about three months to live, really should they be spending quality time with the family and doing everything they’ve always wanted to do before they die … If people were honest about what they were going through and they took in that information it might decide how they were going to spend their last few weeks … Focus group 3

It is important to acknowledge, however, that a good death is highly subjective7 and should not be normatively defined.25 For some, denial may remain the best coping strategy. Anger.  A final complexity in patients’ response to prognosis was anger. Although anger is a normal response to loss,26 some patients were reported to have difficulty moving beyond this rendering any conversation difficult, let alone sensitive ones about transition to dying: DN1: And some people never get to acceptance and stay angry … We’ve got a gentleman at the minute and he’s very very angry … and he doesn’t talk about his illness, he talks about everything else because if you touch on it he’s very very angry … And he won’t receive any kind of support and that’s hard for us

DNs found anger the most complex emotion to deal with, which is echoed in Dunne et al.’s5 DN study. They found that DNs’ response to anger was to physically distance themselves from the patient. Smith and Hart27 reported similar findings in the acute context. In contrast, our DNs found angry patients’ imposed emotional distance difficult because supporting patients at the end of life was so highly valued.

Timing of the conversation Another challenge was timing conversations. Supporting palliative patients at home was contingent upon continued access. The DNs did not introduce preferences for end of life care too soon because patients and carers wished to ‘maintain normality’ (FG1) for as long as possible, and premature – and unwanted – conversations may have closed the door to future visits. This finding is supported by Barclay et al.10 who argued for ‘the right conversations with the right people at the right time’ to make best use of the time left and what was to come. DNs were careful about timing and level of information given and were critical of specialist palliative care colleagues who had closed the door to future visits by discussing topics too early that were ‘painful’ or ‘frightening’ for patients and carers, something DNs avoided if possible: After the Macmillan (specialist palliative care) Nurse had been in and done a really good job, she asked her not to go back again because the information she was given was too painful to hear. Focus group 3

Equally, however, DNs reported that they try not to leave the conversation too late when there was little time or energy to prepare for death. Timing was compounded by prognostication which is notoriously difficult at the end of life,10,28 although most DNs reported they had a sense of when the downward trajectory was occurring.

Home environment There was agreement that lack of privacy rendered the home a difficult setting to have conversations about impending death. Family members were frequently present during visits which changed the dynamics of interactions:

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Palliative Medicine Maybe, they’ve got a house full of relatives that are all wanting to put their ten minutes in, oh, and he’s done this and he did that and he’s not had his bowels opened for five days. It’s such a lot, isn’t it?

been in this job for years [agreement from group].

Focus group 3

DNs were asked how they approached difficult conversations. Some described starting with how much patients already knew, which is recognised as an effective strategy:34

Another DN described how a patient was reluctant to speak when his wife was present, and obvious conflict between them: DN1: The first visit I went to [patient] … I had to just sit there and he was very offhand with me. But next time I went, she wasn’t there, his wife, and it was like a completely different man. He opened up and we had, but when she was there the first, it was terrible. It was quite embarrassing really, sitting there while two people are arguing [DN2 then discusses her experience of conflict between spouses] Focus group 2

It is recognised that carers can find diagnoses as, if not more, difficult than patients,29–32 and for this reason, conflict between spouses at the end of life is not uncommon.33 Other aspects of the home that were challenging were the television in the background, presence of pets, telephone ringing and, in the next example, presence of young children: Yes, because if you’re giving bad news you don’t want all and sundry there, do you? The Grandchildren running in and out … Focus group 2

DNs agreed that breaking bad news to children needed to be carefully executed, and not an ‘overheard’ conversation.

Lack of preparation for breaking bad news Breaking news about transition to dying in palliative home care was complex, but DNs had no preparation in this, nor was there any prospect of them receiving any. There was agreement across all four focus groups that learning was through trial and error: I think you develop your communication skills with experience … I’ve never had any training in, this is how you sit down with a family, this is how you break bad news, this is how you discuss death and dying, I’ve never had that [agreement from group]. Focus group 3

Interviewer: What sort of training have you had? DN1: I would say nothing formal. It’s experience over the years you know, I’ve

Focus group 1

I think it’s about acknowledging their needs isn’t it? And also at a level they understand … So it’s assessing how much they know. Focus group 2

Others, however, described colleagues who were reluctant to talk to patients about anything other than physical care: They don’t have those skills … there’s some that go in brisk and brusque, don’t want to know, don’t tell me, and don’t use open ended questions. Focus group 3

Others said that they were lacking confidence and skills to have difficult conversations: You’ve not always got the right tools. Focus group 4

This DN said she preferred to refer the patient on to colleagues, but as discussed, there was not always another professional to refer to. Complexity of their work with palliative patients led to agreement across focus groups that communication skills training was needed and, while basic training that we were piloting would be ‘a good start’ (FG3), there should be ‘some, sort of, advanced communication to step it up a level’: DN1: How to ask questions … like what do you know and what have you been told and, you know, it’s open ended questioning. DN2: And, how to deal with the answers once you’ve got the information. DN1: I think we need training in communication and how to deal with asking difficult questions. Focus group 3

The one DN (FG1) who had been trained in advanced communication skills, including breaking bad news, described the training as challenging, but extremely helpful and she would ‘recommend it to anyone’. Implications of these findings will now be discussed.

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Discussion DNs spent a lot of time supporting cancer patients and their families towards end of life. An important antecedent of a ‘good death’ was considered to be breaking the bad news that death was approaching so necessary preparations could be made such as discussions about preferred place of care and death, and anticipatory medication in the home. While well placed to break news of transition to dying, DNs found this complex for a number of reasons. Some patients were unaware of their prognosis due to unclear messages from hospital consultants or carers’ unwillingness to disclose; many patients were aware but in denial and others were angry. Appropriate timing of conversations was difficult to gauge because late conversations left no time for preparations yet early conversations could jeopardise relationships with the patient and family and deny continued access; and the home environment was sometimes less than ideal for sensitive conversations. DNs had little to no preparation in having ‘breaking bad news’ conversations other than experience on the job. This is the first study to address this important role for UK DNs and their need for training in this respect. The findings have wider implications for any setting where nurses are likely to be breaking bad news of transition to dying, but particularly in countries where end of life care often happens at home, and nurses have a central role in enabling a good death, for example, Europe, Scandinavia and North America.35–38 This study found that DNs are frequently the first point of contact when a patient is transitioning to dying and ideally placed to do this work because they have a relationship with the family and know them well which is known to facilitate breaking bad news conversations.39 DNs stated that they were motivated to have these difficult conversations – which others might avoid – because the final stage of caring for palliative patients is dependent upon their awareness of dying. Most of the literature on breaking bad news focuses on the point at which bad news is delivered by a doctor. There is far less evidence of nurses actually breaking the news, as we found. For example, Warnock et al.’s14 study of nurses in an acute setting found infrequent reports of them actually breaking bad news, but frequent involvement in the process, such as preparing the patient, supporting them as news was given and translating information afterwards, as we found in our DN sample. An exception is a Canadian study of a spinal unit in which Dewar40 found nurses frequently reinforcing bad news previously given by doctors, but also giving it themselves, often without preparation. This might occur if a patient asked whether they were ever going to walk again. Dewar found nurses would typically give a ‘standard line’ that the patient should talk to the doctor about it but they would tell them what they knew. The standard line would involve good news (hope) along with

bad news about the reality of their current situation. The difference between Dewar’s study and ours is that while it was possible to refer the patient to the GP, DNs were ideally placed for this work. ‘What they knew’ was that the patient was dying, with little ‘hope’ to offer except a plan for good end of life care which although vital, was perhaps meagre consolation compared to recovery. Breaking bad news is highly complex work, with additional challenges in the home environment as our data show. For example, models of breaking bad news such as SPIKES34 suggest the first step is organising the setting which can be difficult when this is the home with all its distractions. As one DN said, it is difficult with ‘all and sundry’ present. An additional challenge is noticing cues over weeks and months that the patient has transitioned to dying, so breaking bad news can be timed carefully. DNs do not have access to blood results or other prognostic indicators28 but instead rely on more subtle cues that the patient is approaching the dying phase such as increased fatigue, pain, dyspnoea and loss of appetite.41 It is by no means an exact science and requires close observation and regular visiting, which is in turn dependent on overall caseload dependency and staffing levels. DNs discussed sensitive timing of conversations to ensure the door remained open to further visits. Their observations that conversations held in the last few days of life may be too late, such as saying goodbyes and bringing anticipatory medication into the home, and conversations held too early are similarly problematic, are both supported by the literature.8,34,41,42 Our DN sample argued that because their supportive role involved building relationships with patients and families and enabling them to ‘maintain normality’ for as long as possible, conversations about dying could not be held too early. The focus should therefore be the weeks, or 1 or 2 months, before death when symptoms and needs increase and interventions can have a significant impact on the well being of patients and families.10,34 This study has important implications for clinical practice in both the United Kingdom and countries where nurses have a significant role in palliative care in both community and hospital settings. Breaking bad news has already been conceptualised more widely than doctors delivering news in a time limited consultation43 to the lead up to the consultation and afterwards when news is assimilated.14 The concept now needs to be widened further to include supporting patients through the transition to dying, and the central role of the nurse in this in some settings. UK DNs clearly require preparation in this work. Interestingly, in 2001, the Department of Health invested a considerable sum in training DNs in the principles and processes of palliative care – with Breaking Bad News as an optional component – yet none of our DN sample had received this despite many having worked in the service for a long time. Training needs to be tailored to their

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practice and includes not only how to hold conversations, but timing them, negotiating the home context, talking to children and managing lack of awareness, denial and anger. SPIKES34 is the model most often used to train practitioners in breaking bad news in the United Kingdom but is designed for clinic consultations and not the complexity of the home context. Further research is needed into modifying a model such as SPIKES for the home, the best approach to training DNs, and the impact of timely conversations about transitions to dying on a ‘good death’. This study has limitations, and our findings should be interpreted with these in mind. Our sample was limited to four areas in North West England where the pattern of palliative visiting may be different from other parts of the United Kingdom. It is also possible that the use of focus group methodology may have led to views of some participants being over represented. The researchers did however observe group dynamics and make every effort to include views and experiences of all participants. Themes reported here were repeatedly raised by study participants, with agreement in the group that these were major concerns.

Conclusion In the United Kingdom, DNs are the practitioners who are with patients during their last weeks/days of life at home. To ensure everything is in place for a good death to occur, bad news has to be broken that the transition to dying has begun. While other colleagues can avoid having this difficult and distressing conversation, DNs have no choice if they are to provide optimal end of life care. They have a crucial role in breaking news of transition to dying – often in difficult circumstances – to enable a good death. While they may be ideally placed to carry out this task, they are entirely unprepared for it apart from ‘experience’ gained on the job. They urgently need carefully tailored training in this aspect of their work, to enable them to provide best possible end of life care. Acknowledgements The authors would like to thank our steering group of clinicians and service users for their valuable advice throughout, and the District Nurses who took part in the project and generously gave their time.

Declaration of conflicting interests The authors declare that there is no conflict of interest.

Funding This project was funded by Dimbleby Cancer Care.

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Breaking bad news about transitions to dying: a qualitative exploration of the role of the District Nurse.

UK District Nurses have an important role in enabling a good death. Patients and families need to know the patient is approaching the dying phase, yet...
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