First encounters and understandings of ACP
Most of the community nurses had first heard of the term ACP between two and three years prior to the focus group discussions. Nurses identified as sources of information about ACP the new documentation being introduced in practice as a result of the Mental Capacity Act [5
], discussions about practice and policy development taking place locally and information related to care planning 'tools' such as the Gold Standards Framework. However, most reported not feeling confident they properly understood the various possible components of ACP:
I think, maybe for me, it was when I worked in (locality) which was over two years ago, we started to go to GSF meetings...over the last two or three years it's been coming in but now a little bit more formally and a little bit more structured I suppose (Community Staff Nurse).
Some perceived that ACP was associated with a very particular set of paperwork and forms, generated by national legislation and policy development, which seemed to imply formalization of everyday practice among individual practitioners. Some recalled being confused about the differences between day-to-day 'care planning', which they regarded as a key aspect of their role, and the more unfamiliar ACP:
I think one of the problems-sort of being on the outside looking in - is that a lot of DNs think, oh not another project, not more paperwork, and it's been in a way perhaps not greeted with huge enthusiasm, although as people have said here before, it's something that a lot of district nurses and healthcare professions say; we've been doing this for, we've done this but we haven't actually formalized it, and that's very much how I see the ACP (Hospice Nurse).
I think, when I first heard about it, it was probably about two/three years ago, I can remember someone talking about it and really thinking what's different about that? And not quite working out exactly what it was; how it differed from ordinary care planning, in other words. And I don't think it was until I got involved, I changed job, and ... got involved with the End-of-life Care Programme, and then obviously it made much more sense. (End-of-Life Care Programme Facilitator).
One Community Matron with management and support responsibilities for other staff recalled her gradual realization, after considerable anxiety, that ACP involved documentation and communication of familiar everyday practice.
I was like 'oh my God what do I need to do, what do I need to do', but we don't need to do anything [different] just document the conversations... we just need to communicate them to other people (Community Matron).
The contribution of ACP to nursing practice in end-of-life care
Many of the nurses communicated their perceptions of the meaning and potential value of ACP by recalling personal experiences in their family. These personal reflections prompted nurses to identify how, in spite of changes in rhetoric, care at the end of life in their experience tends to be surrounded by a 'curative' culture which forecloses on the possibility of preparation for death and poses a barrier to planning supportive services for dying patients and their families. They perceived the role of the nurse in ACP as an opportunity to shift this emphasis, with ACP seen as an opportunity to celebrate excellent clinical practice:
At its best, it opens up a dialogue which creates a relationship, hopefully a therapeutic relationship, between the clinical person and the patient, and also involving the family if the patient or resident wants the family involved... (End-of-Life Care Programme Facilitator).
The facilitation of 'choice', backed up by resources to enable more than one option for care, was seen as valuable. Similarly, the provision of a framework to enable conversations with patients who wanted to talk about their concerns for the future was viewed to be important. Some nurses reported being more aware as a result of debates about ACP of 'prompts' or 'cues' with which patients may introduce issues about the end of life. For example, one nurse reported how an older person for whom she cared told her:
...I don't need to buy any clothes now; I'm 78 and what I've got in my wardrobe will see me out' (Community Matron).
This nurse described prompts such as these as 'hooks' to hang the next piece of conversation on while attentively following the lead of the patient and thus adapting the pace of the conversation to their degree of comfort with what might otherwise be 'dangerous' territory.
The use of ACP as a means for enabling communication in families was seen as another potentially beneficial factor, providing opportunities for nurses to work with families to build closer relationships and resolve points of conflict or silence:
...you often get families and patients where they're not talking, each is protecting the other, each thinks that they're aware of the reality of the situation and the other person isn't and so it can be useful as it helps to ease dialogue between them and bring them to the same place and the same realisation that ... both parties are aware of the seriousness of the situation and the closeness of the end of life... [it] is very useful to clear the air in some cases [while being] prepared for the fact that you may never get resolution with some people...you might actually create discord (Macmillan Nurse).
It was perceived that where facilitating family communication worked well, the fact that family members became more aware of patients' views and concerns sometimes assisted them subsequently during bereavement. Nurses recognised that this work required attributes of empathy and understanding, as well as knowledge and skills in communication and awareness of the components of ACP.
Some nurses perceived that adopting ACP practices meant that patients' views about some important elements in their care were more likely to be both recorded in their care plan and acted upon, with the result that patients were less likely to be admitted to hospital. In addition, nurses perceived that patients were more likely to continue to express a wish to be cared for at home if preferences that were important to them could be identified and met:
... we're asking, you know, you're asking patients where do you want to be, what's your wishes, you know. (Community Matron).
... a patient we've nursed quite recently with motor neurone disease - he...knew exactly what he wanted. He wasn't going to have a peg feed, he wasn't going to lie down in his bed, he wasn't going to sleep on a pressure reliever mattress, he was going to go upstairs ...we had to really accommodate that.... (District Nurse).
Challenges and barriers to ACP
Nurses identified a number of challenges and barriers to the effective implementation of ACP, which are summarized in Table .
Challenges and barriers to ACP
Challenges to ACP
Participants highlighted concerns about the timing of ACP and the relationship between their responsibilities towards patients in the ACP process and the responsibilities of other staff:
I found it interesting, on a GSF form in one practice we've got preferred place of death, and often the GPs will say 'oh no, it's too early to talk about that yet' (District Nurse).
But when do they need it? Is it from diagnosis? And I think that's the difficult thing because obviously consultants don't have time to do it, registrars in hospital don't have time to do it, and obviously it comes down to [Macmillan] nurses doesn't it, [or] support nurses within the hospital, because that's usually where the diagnosis is made (Macmillan Nurse).
Participants observed that in their experience GPs are often reluctant to consider and discuss specific decisions relating to ACP with patients or their representatives, whether in the community or in care homes. It was felt that this reluctance arose from discomfort among GPs about raising any ACP issues with patients, for fear of raising issues about the end of life 'too soon'.
Nurses with responsibilities for patients with non-cancer long term conditions were especially aware of the issue of timing, given the difficulties of prognostication in the latter and the risk of raising issues about end-of-life care at an inappropriate time that would harm the patient and not be congruent with their coping strategies:
Patients with heart failure and COPD may be living for 10-15 longer years. So I suppose it's pitching just when it's appropriate to have those dialogues, and I think it's different for every person, and I think the same as has been said earlier that there are some people who are going to be very happy, for want of a better word, to discuss that, and there are other patients who don't want to go there (Community Matron).
In all the focus groups, concerns were raised about the bureaucratization of ACP leading to a potentially blunt, harmful 'one size fits all' approach:
... what I have seen unfortunately, is sometimes it's used as more of a checklist, you know, with tick boxes ... (End-of-Life Care Programme Facilitator).
One Macmillan Nurse perceived there was a danger that if nurses and other practitioners were encouraged to regard ACP as a set of procedures or a 'check list of questions' this could effectively subvert the goals of good end-of-life care practice: patient centred care and communication guided by expert clinical judgment.
Nurses also perceived that the wider rhetoric surrounding ACP directed the focus of what practice was in existence towards instructional directives ('advance decisions to refuse treatment'), even if these might be of little relevance to the concerns of most patients. In particular, they perceived that some patients, on admission to hospital were being asked about resuscitation decisions inappropriately and in the absence of any wider discussion about care:
It's interesting though when a patient's taken into hospital now there is a resus status put on them straightaway (Heart Failure Nurse Specialist).
But straightaway they were talking to her daughters about her resus status, you know, that was the first thing that when she got out of the admissions hall that happened ... (District Nurse).
However, in contrast to this, nurses also observed that GPs were often reluctant to engage in discussions about resuscitation or any other end-of-life issues with patients. Nurses perceived a general reluctance to disengage from the 'active' curative mode of care resulted in GPs not acting on the perceptions of nurses or relatives about patients' wishes, even when these had been recorded in an advance care plan. For example, one nurse recalled a patient who she had helped to set out ACP wishes. This included his wish to not go into hospital but to be cared for in his care home at the end of his life:
... a duty doctor was called out in the middle of the night, and they took him into hospital, and unfortunately he died in hospital, which is not what he wanted, [it] caused a lot of issues for his family as well ... And I think the care home staff at the time were pretty adamant his wishes are that he doesn't, but the duty doctor was: 'no he is going', and sort of overruled it all.... (Community Psychiatric Nurse).
Lack of readily available or clear documentary evidence of patients' advance statements and uncertainty about the status of the wishes of close family members in relation to patients' best interests were seen as reasons why medical staff and senior nursing staff might take the least 'risky' course of action when presented with an unfamiliar patient who was acutely ill towards the end of life. One participant recalled the dilemma facing a colleague when dealing with a care home resident whose family expressed a strong preference that he should not be taken into hospital:
(My colleague) was actually put into a bit of dilemma because [patient] was really very ill, and he subsequently died ... she wanted to send him to hospital because he needed hospital treatment. But the daughter had said expressly ... she preferred him to stay in the residential home and got very angry when he was admitted to hospital, but it wasn't recorded anywhere (District Nurse).
Documentation, storage and retrieval of ACP records were perceived as a significant issue across systems of care, especially when patients had many sets of notes and multiple admissions to hospitals.
A further challenge to ACP was the potential conflict between the rhetoric which locates the patient as a free and 'autonomous' agent, with the reality that decisions are made by patients only in the context of relationships with partners or other relatives. A lack of resources to support family carers was perceived as one reason why there might be a disjuncture between patients' and carers' views. A District Nurse outlined an example where a patient wished to be cared for at home but the family were worried about whether they could cope:
... the family were so concerned, worried, although we assured them they'd have a great care package, in reality... it doesn't always come to fruition and there isn't always the care there to support those families... We can't guarantee 24-hour cover but we will try our utmost (District Nurse).
The issue of resources is further examined below.
Barriers to ACP
Inadequate resourcing was identified as a key barrier to the implementation of ACP. Nurses perceived that ACP could only be implemented authentically if there were adequate services and resources in place to engage with ACP, to support any choices that patients might record for their future care towards the end of life and provide support to family carers. The nurses below are reflecting on patients' choices for care at home and in a hospice respectively:
... you can try and get the services together and coordinate them, but often they're not there. And I think people can manage very well at home if that's where they want to die as long as we've got the services to keep them at home and to support them (Macmillan Nurse).
Certainly, around heart failure at the minute we do struggle for palliative care support. There isn't a specific unit that patients can go into. When they talk about the hospice, there's actually only day care hospice. X Hospice is only for cancer patients (Heart Failure Nurse Specialist).
A further barrier to ACP perceived by the nurses was a widespread lack of knowledge among the general public, patients and their family members about the availability of help and support during illness and end-of-life care, and a contemporary tendency to not think about one's reaction to serious illness until it actually occurs:
People don't know ... what they want until they're in that situation. Because often people will say to me I didn't know there were all these services out there (Macmillan Nurse).
Nurses also perceived that patients and the public lacked knowledge about the course and outcome of common life-limiting conditions. This created a further barrier to ACP conversations, since many patients perceived they were irrelevant to their situation.
More generally, nurses perceived that patients had many fears about death and illness, which combined to create a taboo surrounding the subject. Fears identified included being frightened of death; fears about going into hospital; about being alone and dying alone. These were all perceived as creating barriers to discussion and yet nurses described how fears could be alleviated once patients were encouraged to put into words what they were most worried about:
And it's also sort of about unpicking why people are ...maybe to facilitate the talk [there is a need] to actually unpick that, what is the fear around, for those people who don't want to talk about it yet (Macmillan Nurse).
Perceptions about training and education
Among the greatest challenges that nurses perceived to be associated with ACP were their own and colleagues' knowledge and skills about communication practice, recording and follow up:
...we've still got - when you look at teams - a lot of nurses that aren't confident to have those conversations. They say: ' well you like palliative care, you're good at it', and they back off ...That's my worry - the confidence of the staff, teaching them to do it and then following it through (Macmillan Nurse).
I've been in the post three years, so for me it's the uncertainty or where you do document all this information and actually how you can get it through to other people so the patients' wishes are respected - the documentation is a big thing for me (Community Matron).
Nurses recommended that training and education should occur in several ways. Alongside formal training and education, whether by face-to-face teaching or distance learning, some saw the use of mentorship and apprenticeship styles of training as crucial, so that less experienced staff could learn from their more experienced colleagues:
I think there is so much to learn about communication skills and dealing with patients which you can emulate from a role model. And I feel very passionately that junior nurses need to work with senior nurses much more at the bedside, not in the classroom because I think there's a theory and practice divide (Macmillan Nurse).
Those who were involved in care homes perceived a need to provide ongoing support and mentorship of this type to care home staff, particularly to care home managers, so that ACP could gradually become embedded in practice there and so that care staff could gain confidence in dealing with GPs and visiting clinical staff.
Drawing on their experiences of receiving training which had largely focused on the implementation of the Mental Capacity Act, nurses recommended that the following should be included in any education programme to ensure familiarity with the broader aspects of ACP:
• Design of 'real' scenarios for training, which reflected the reality of daily practice and reflected the variety of patients and people encountered during community nursing
• Design of a flow chart to inform nurses and others about the various stages of ACP
• Practical advice about communication and documentation.
Those nurses who were already involved in ACP practice, perceived the importance of ongoing support/clinical supervision as a means of building confidence and safe practice. This was perceived to be just as crucial as knowledge and skills training.