The EOLCPW seemed to mean different things to different people and was not clearly articulated by anyone. Some health professionals appeared to have limited knowledge of the pathway and its associated documents and supporting information. There was some apparent confusion between the EOLCPW and the LCP. There were variations, between individuals and services, in the documents used and information leaflets that were sometimes given to patients. Some respondents associated the pathway with cancer and felt that this did not work for conditions such as heart failure or COPD. Others valued the pathway and associated documents as a prompt to think through different aspects of palliative care and a reminder to consider all the elements with patients. However, there was a tension between the value of documentation and guidelines as a means of informing and standardising care, and the risk that they prompted a rigid, unreflective‘tick-box’exercise, which served to diminish and undermine the quality of care. Some respondents valued guidance; others felt that the recent drive to ACP did not add to their established expert practice, and saw little benefit in additional paperwork. However, several respondents, including GPs, referred to their awareness of being held accountable if they did not conform to policy guidelines for practice.
People often see all the procedures, along a pathway and actually they miss the end product that they’re looking for. So, you can tick all the boxes but actually, you’ve missed the spirit of the thing.
GP4 No, I think it is helpful and I think it certainly helps you, it helps you focus on what stages that you think the patient’s at and in theory, then what, what we should be thinking about at those different stages? I’m loath to call it a tick-box exercise because it’s not . . . I think it just reminds people.
PCN2 Yes, is that the Gold Standards Framework? Or is that different end of life, is that a different pathway? Is this where we’re looking at like all the little tick boxes whether everything’s been addressed,
whether, discontinue inappropriate medication and all that kind of thing, is that the end of life [care pathway]?
DN2
Avoiding unscheduled hospital admissions
The remit to enable dying patients to avoid unscheduled hospital admissions and to support death at home was a strong theme throughout all the professional accounts, especially those of the specialist nurses and CMs. This was one reason for the importance of getting the patient to agree to put a DNACPR order in place. ACP could be a means of avoiding unscheduled hospital admissions through supporting patients and their relatives to feel confident about their ability to cope with dying at home, and thus enabling them to achieve a good and peaceful death. Another theme was that, despite well-laid plans, patients and, especially, their families were likely to panic when a crisis arose and summon the emergency services, who would tend to take the patient into hospital and, in the absence of a completed DNACPR form, would be obliged to attempt resuscitation. Some respondents considered such an outcome to
constitute a failure in professional support and preparation. Others considered it understandable, if not inevitable, that families would react in such a manner when faced with the frightening reality of the patient’s deteriorating condition and impending death.
And I think relatives panic. . . . If you see your loved one struggling for breath, knowing everything that’s in place, you’ve been told,‘Do not call 999’. What you going to do? Of course you’re going to, and that’s why we try and, you know, go on and on about it just because, we know it happens, reality is, who wouldn’t?
CNS_HF focus group
Several professionals linked their commitment to avoid hospitalisation to the need to keep costs down and/or meet local practice targets. Such statements tended to be qualified by an assurance that they would always act in the patients’best interests. However, most professionals clearly felt that there was a convergence of interests given that, in most cases, the best course of action was for the patient to die at home. Although hospital was generally seen as a bad option, some respondents acknowledged that this was not always the case. Professionals recalled a few patients who stated hospital as their preference. For many others, admission proved to be unavoidable, either because of deterioration or because the family could no longer cope with care at home.
Documentation
Systems of documenting and sharing written information are critical elements of effective patient care especially in complex systems of delivery. The availability and content of forms defines the nature of tasks to be accomplished and directs professional attention towards certain topics rather than others. They also allow for audit and assessment of easily measurable aspects of professional practice and can be conveniently linked to targets as a means of evaluation of care and incentivising practice. In this sense, documentation functions as an important agent or mechanism of care. The study practices and associated services operated with a range of different systems and documents relating to ACP and EOLC. The GSF and its associated documentation was the principal means of identification and communication about patients needing palliative and EOLC. Nurses also communicated by written notes held in the patient’s house. These included completed DNACPR forms and documented preferences for place of death and any other written statements about EOLC that the patient may have made, which could be critical in communicating to professionals how future care should be managed. Transfer of patient information between services varied considerably in method and efficiency, and the extent to which all relevant records were available and could be shared electronically. Practices lacking integrated electronic records required nurses to make more use of the telephone and fax machine. Being in close proximity to colleagues, as was the case where practices were located in local health centres, facilitated verbal communication.
On [the shared computer system] it’s have they got the DS1500 done? It’s all documented. Is this done, is that bit done, has anybody spoken to the family, how are they coping with it all?
DN3 We have our own Macmillan notes. So, we don’t even have specialist palliative care notes. We have medical notes, we have inpatient notes, we have day care notes, we have our notes. If somebody’s come into [hospice] day care they will have the medical notes in the day care, that will all be together. Same on the ward. But for us, we need our own notes because we’re in a separate office. You’re having phone calls to and from all the time, you’re having quite a lot of contact, I document all of my stuff, I then ring the GP. We don’t use [the shared computer system].
Documentation that an ACP discussion had taken place rarely gives an indication of the nature and depth of the discussion that might have accompanied this. Respondents rarely reported accounts of detailed or lengthy discussions, but tended to be oriented towards completion of tasks such as documenting DNACPR and PPOD. Several GPs felt that the pressure to conform to documented processes undermined their clinical autonomy and professional judgement. In this context, undertaking ACP was just another box that needed to be ticked for commissioning purposes and to demonstrate a task had been successfully
completed. Regardless of its benefits, paperwork was felt to be burdensome and time-consuming, constantly replicating a multitude of forms which had little impact on care, and reduced the time that could be spend in direct contact with patients.
I do find all the forms and the DNA[CP]R stuff quite difficult actually. It’s just the time-consuming admin stuff, filling in forms; 15 years ago, people were allowed to die at home. [laughs] Now they can’t die at home unless you’ve filled in four or five forms.
GP11
General practitioners commented on their appreciation of being able to delegate this task to nurses. Some nurses reported that the formality of the ACP documents was off-putting to patients, who preferred a more informal approach to noting their preferences.
The paperwork is just paperwork to me, it’s very bland, it’s very clinical, very formal. And, unfortunately, when it comes to end of life care, patients don’t like formal. They like informal. They like you to feel like you’re really listening to them. So, producing a form, I don’t always think’s the best answer.
CNS_HF6
The completion of documentation was also clearly linked to practice targets and (financial) incentives, and quality appraisals. This introduced an additional level of constraint and compulsion. Respondents tended to qualify their accounts, saying that, regardless of external pressures, their first priority was to serve the best interests of the patient. However, the nature and extent of material relating to incentives and targets suggests some tension in relation to competing priorities.
There’s no pressure in that respect in the driver of keeping them out of hospital. I’ve not got the pressure, but obviously they wanted to reduce hospital admissions. But I know that they do–I don’t know what kind of point system it’s got, but if you’d filled an advanced care plan, or priorities of care, Preferred Priorities of Care in, it counted as one of their QOF points . . . So each one that you’d done, obviously, it looked better, and they did aim that everyone that was palliative had one of those in place.
DN4 Well we’ve had that priorities of care plan . . . Last year it just came out and I don’t know if it was a CQUIN [Commission for Quality and Innovation] target and one month we had to record how many people we’d given those out to. And whether they filled them in or not was irrelevant; it was just whether we’d offered that piece of paperwork. So we did it once, and then never really heard anything about that again . . . it was basically a quality marker of how well you’re doing . . . and there’s money attached to those. So it’s not really a target, but if you don’t meet that money gets taken from the organisation.