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Abstract
Objective This study aimed to understand the experiences of palliative care patients when accessing or making decisions about out of hours (OOH) services. It also aimed to illuminate barriers and enablers to accessing appropriate and timely care following the introduction of the 2004 New General Medical Services Contract.
Method Longitudinal prospective qualitative study using semi-structured interviews and telephone interviews over 6 months and analysed for thematic content. 32 patients defined as receiving palliative care in six General Practices and three hospices selected on the basis of size and rural/urban location in Southern England were recruited.
Results Continuity of care was highly valued. Participants described the importance of being known by the healthcare team, and the perceived positive implications continuity could have for the quality of care they received and the trust they had in their care. Various factors prevented participants from seeking help or advice from OOH services, despite having health concerns that may have benefitted from medical assistance. Prior poor experience, limited knowledge of services and knowing who to call and, indeed, when to call were all factors that reportedly shaped participants’ use of OOH services.
Conclusions Interpersonal or relationship continuity and management continuity are vital to the process of optimising the patient experience of OOH palliative care. While recent service innovations are tackling some of the issues highlighted, this research reinforces the value patients with palliative care needs places on continuity and the need to improve this aspect of care management.
- Qualitative
- Palliative
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Introduction
The out of hours (OOH) period comprises almost 75% of the week; a significant period of time in which people may need to access care. The 2004 UK New General Medical Services Contract allowed General Practitioners (GPs) to opt out of responsibility for the provision of OOH care, which shifted to primary care organisations.1 There were concerns that separation of OOH services from daytime services may impair continuity of care for people with complex healthcare needs and disadvantage those in need of palliative care.2 ,3 There is also some evidence that time to triage in cancer-related calls to new OOH services has increased, and that correspondence between OOH and in-hours professionals has decreased, with implications for continuity of patient care.4
The national initiative of the Gold Standards Framework (GSF) was introduced in the UK to improve palliative care in the community.5 One of the seven areas GSF focuses on is the need to improve continuity, particularly in OOH care. The framework offers tools, guidance and recommendations to assist planning palliative care. Palliative care registers have been developed in General Practice to aid implementation of their role within the ‘end of life’ care pathway, as specified by the End of Life Care Strategy.6
A qualitative study that sought GP and district nurses’ experiences of and perspectives on GSF reported that it had strengthened their provision of community palliative care,7 that communication within primary healthcare teams and co-ordination of services had improved. They described more consistency of care, with less likelihood that individual patients would ‘slip through the net’. The most common areas of concern were in relation to the workload associated with the role of GSF coordinator. Overall, there is evidence to suggest that implementation has been inconsistent and its impact on patient care is unclear.8
The End of Life Care Strategy promoted patient involvement in decisions related to their end of life care and documentation of patient preferences. Over half of people with a progressive illness want to die at home,9 yet the WHO analysis of palliative care found that most deaths in the UK occur in hospitals.10 Patient involvement will also rely on a system that supports continuity of care and the availability of adequate urgent care from well-coordinated services in hours and out of hours.
Some patients and families with palliative care needs have reported reluctance to contact OOH services11 ,12 and have reported delays in seeking help. Barriers to using OOH services include being labelled a ‘difficult’ patient, having to prove a legitimate call on services and fears of an inappropriate admission to hospital.11 ,12–14 However, research to date has mostly focused on the experiences of people with cancer who have accessed and used services.15 By adopting a longitudinal prospective study design, we identified and examined the experiences of people with palliative care needs over time and identified reasons for accessing or not accessing OOH services.
Methods
We used a qualitative prospective design over a 6-month period to capture participants’ in-depth experiences of their palliative and OOH care use over time.
Patients were recruited from six General Practices and three hospices in Southern England (ranging in size and rural and urban). Purposive sampling according to sex, age and diagnosis aimed to recruit a range of patients on a general practice palliative/supportive care register or defined as receiving palliative care or under the care of one of the three hospices. This process was guided by the definition of palliative care adopted by GSF which states that people are approaching the end of life when they are likely to die in the next 12 months.16 Only patients who were aged 18 years or older and were capable of providing informed consent were contacted. Recruiting GPs/Hospice managers excluded patients with significant distress, dementia or other cognitive impairments. Eligible participants were sent information about the study by the researcher and invited to return a reply slip if they wanted to opt-in to hearing further information; non-responders were sent one reminder letter. Nina Shergill or Helen Austin arranged a face-to-face meeting to explain the study, and a follow-up call 48 h later determined readiness to consent to participate. The participation of carers was discussed at the meeting. Carers also gave consent if the person they cared for wanted them to support them in their interview or was too ill to take part. Bereaved carers already involved in the longitudinal study through the patient with palliative care needs were also given the opportunity to participate in interview and consent was obtained prior to interview. Participants were followed for 6 months to provide the opportunity to discuss OOH service experiences over time. No ethical issues arose during the project.
Face-to-face semistructured in-depth interviews were conducted with patients and carers/family members in their homes by NS or HA (one full-time researcher and one senior health visitor; both trained in qualitative interviewing). Interviews began with a ‘grand tour’ question17 to permit participants to ‘tell their story’ prior to more directed questions about their experiences and perceptions of OOH services (whether they had used/thought of using (‘incident’) or not used (‘non-incident’) OOH services) (box 1). Interviews were audio-recorded and transcribed verbatim.
Interview guide
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Broad opening question:
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Before we turn to talk about the particular event(s) that we're here to discuss today, could you just tell me about your illness? (providing context for later questions)
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Specific questions about out of hours (OOH) care:
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Can you tell me a bit about your experiences of healthcare services outside of normal working hours?
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Is there one particular occasion that you would like to focus on (use monthly audit to prompt for particular event)?
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Probes: What were your reasons for accessing help?; How long did you wait before accessing help?; Did you have any difficulties accessing help?; Whom did you contact initially?; What other services did you access/try to access at that time?; How do you feel about the help that you received on that particular occasion?
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Do you think your most recent ‘significant’ event/service experience is likely to alter/has altered the way you have/would use services in future?
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Is there anything that makes you want to avoid using services?
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Probe illness model, returning to stage of distress, social networks, anticipated problems, previous experiences of health services, fear of not being taken seriously/not being seriously in need of care/time wasting?
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Is there anything that makes you use one particular service first?
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Do you think your care could have been better?
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In general, what have you found to be most difficult when trying to get help OOH? Have these changed over time?
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What do you think about the services available in general?
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What role do you view your general practitioner as playing in your care?
Monthly/fortnightly structured–telephone interviews tracked any changes in circumstances. If an incident had occurred, a face-to-face interview was arranged. A pro forma ensured transparency of this process. Before each call, the researcher checked that the study participant was still alive. Participants were invited to contact the researcher in-between the monitoring call if an OOH incident occurred.
Drawing on principles of ‘constant comparison’18 and adopting a ‘subtle realist’ approach,19 interviews were inductively analysed to generate key themes. Three experienced researchers independently coded eight interviews and built collections of data organised into matrices (tables) according to first-level key codes/labels and these were defined by each researcher (using a coding manual). Through data sessions, an overarching coding scheme was derived for the corpus, and final themes were agreed. Incident and non-incident interviews were analysed separately at first for initial familiarisation and generation of initial in vivo codes. When the two sets were compared, it was clear that there was a strong coherence between the groups and the corpus was merged for further coding. Reported themes relate to both incident and non-incident groups. Telephone interviews were primarily a tool for keeping participants engaged and for monitoring for OOH experiences that required an in-depth interview (data are not reported).
Findings
Overall, 32 (19%) of those contacted agreed to participate. Reasons for refusal included potential participants being too tired or them feeling that the study was not of interest to them or irrelevant. A total of 24 in-depth interviews were conducted with 22 of the 32 recruits (two participants had two interviews) (each lasted an average of 60 min) (see box 2 for a breakdown). Two carer and two bereavement interviews were conducted and their responses are incorporated into the main findings. During the 6-month observation period, 10 participants died and three withdrew. Figure 1 details participant flow diagram. Participant characteristics are shown in table 1.
Breakdown of interviews conducted
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Breakdown of in-depth interviews
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Twenty-two participants were interviewed and this generated 24 interviews. Of these, 10 were about out of hours (OOH) incidents and 14 about general experiences (‘non-incidents’ see definition below). Those not interviewed died/withdrew before an interview could be conducted.
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Incident interviews: participants were offered an interview when a particular OOH incident occurred during the 6-month observation period (the incident could include use of OOH services or an occasion when they would have liked to use/had contemplated using services but had refrained from doing so). The interview explored the experience in particular and general issues as noted in the interview guide.
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Non-incident interviews: participants were offered an interview towards the end of the observation period if an OOH incident had not occurred. The interviews explored general issues associated with OOH care as noted in the interview guide.
Participant flow diagram.
Participant characteristics
Two central themes regarding experiences of OOH services for palliative care were determined: ‘continuity matters’ and other ‘key mediators of OOH use’.
Theme 1: continuity matters
The relevance of continuity was evident on a number of levels, supporting existing work20 ,21 that sought to define and explore dimensions of continuity in general, and in detail, on continuity in palliative care.22 Freeman and Hughes’ recent definition of two key types of continuity—relationship and management (box 3) is useful in the context of this article's findings.23
Continuity: Freeman and Hughes, King's Fund, 2010
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Relationship continuity in primary care: building a therapeutic relationship with one or more particular professionals in the practice team.
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Management continuity in primary care: patients involved in treatment decisions and planning their own care, including referrals, and being helped to navigate services and systems outside the practice.
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[Source: Freeman and Hughes, King's Fund, 2010: p6].
‘All I wanted was a voice to recognise me’: relationship continuity
Participant accounts highlighted varying dimensions of continuity, and all oriented to an essential need for a basic recognition of ‘who they are’ when attempting to use or using a service OOH (box 4: quotation (hereafter Q) 1). The consequence of not having access to a trusted contact outside normal working hours was described by this particular participant as difficult and left them feeling vulnerable and out of control (box 4: Q2) and this was common. The importance of interpersonal or ‘relationship’ continuity was interwoven with a need and ability to trust and have confidence in their care providers and the appropriateness of the care they received. Indeed, ‘being known’ was constructed as helping participants to feel ‘very safe and very secure’ (Interviewee 2; patient, 67, woman, cancer, hospice). A sense of not being known was difficult to contemplate for most participants and this could fuel anxiety about OOH services for carers as well as patients (box 4: Q3).
Theme 1: ‘Continuity matters’
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1. All I wanted was a voice to recognise me
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“All I wanted was a voice to recognize me, um, or, or a voice to recognize what I was doing and say, there, there, [name], that's OK, I'll speak to you tomorrow, I'm aware of what's wrong with you, um, and that's fine. And really, the only voice who could do that would be [name], my, my nurse, um … but obviously she switches her phone off, I think she [finishes her shift] at 5 o'clock…” Interviewee 1 (patient, woman, 45, cancer of abdomen, hospice) (Theme 1: Q1).
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“It frightens me because I, I've lost that control. As soon as you go anywhere, out of, as soon as I leave this house, I've lost control unless I have my own Macmillan nurse and my own oncologist and my own GP next to me because they know what I'm like. Take those away and you've stripped me naked and, and I'm very vulnerable … Continuity and control (IV: OK) would, would, um …would make me feel … um [happier], and trust” Interviewee 1 (patient, woman, 45, cancer of abdomen, hospice). (Theme 1: Q2).
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“It was a bit of a nightmare... you just had to get on with it…I used to dread the weekends coming because I knew that I couldn't get the usual people that I knew and he knew and that is important when you're an old person, 94, you put your confidence in the people that you know. He was a very private person and he hated seeing a complete stranger” Interviewee 4 (carer (bereavement interview), patient was 94, man, heart failure, primary care). (Theme 1: Q3).
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1.1 The good old-fashioned doctor
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“Yes I would have preferred the old system where you rang the [GP] surgery … an emergency number, um, and rang them straightaway. It's all this going from one to the other and (IV: Yes) I understand that they need to have a system where the doctor's not being called out every 5 minutes when it's not necessary (IV: Mmm), but … I wasn't impressed”. Interviewee 5 (patient, 52, woman, cancer, hospice). (Theme 1: Q 4).
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“I feel very fortunate in having a doctor's surgery that was, what I call the old family doctor; they know their people… I suppose that's why it's hard to accept somebody else” Interviewee 4 (carer (bereavement interview), patient was 94, man, heart failure, primary care). (Theme 1: Q5).
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“I would say he's (GP) been very caring… they listen, they listen. Um, I mean Dr X when I went to see him last week; he knew straightaway that I wasn't well” Interviewee 6 (patient, 57, woman, COPD, primary care). (Theme 1: Q6).
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“P: Yeah, he's [the GP] very good. (W: Very good, yes, yes) If I feel that there is a problem, I try and get it sorted before the weekend or after, you know. (IV: Mmm mmm) I mean, I would use that [NHS Direct] if I had to, but er, (IV: Yes, yes)…I would try and avoid it if I could” Interviewee 7 (patient, 66, man, COPD, hospice). (Theme 1: Q7).
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2. Management (and information) continuity
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“W: I don't know how … um … I mean, if you go to an out-of-hours doctor, they can't access your medical records, I don't think? So that's one reason for waiting till you can go to your GP the next day or whatever”. Interviewee 8 (patient (and carer), patient was 76, man, cancer of colon, metastatic spread to liver and lung, hospice). (Theme 1: Q8).
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“..the only thing I would say… out-of-hours, it's not going to be our own GP… what don't even know you, hasn't even got a clue what you've been going through... That's what would concern me more than anything…They wouldn't know whether to leave it or to get him in [to hospital]” Interviewee 9 (wife of patient, patient was man, 77, lung cancer, primary care). (Theme 1: Q9).
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“… and then they [the out-of-hours doctor] come in and you have to go through this whole rigmarole of what his medication is... and you're in such a state of confusion yourself…I used to just put everything in the cupboard in the kitchen and I used to open the door and say… this is what he's taking… there were so many instances like that… the doctors were doing their very best with very little information…” Interviewee 4 (carer (bereavement interview), patient was 94, man, heart failure, primary care). (Theme 1: Q10).
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“By the time you've actually, if, you get a doctor call out because you need one, you've already explained the position 4 times before the doctor comes and if you're not feeling well… it's not very easy” Interviewee 12 (patient, 62, man, cancer, primary care). (Theme 1: Q 11).
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“I just feel that there should be somebody available even if it's only on the end of a phone that you can talk to and be confident that they know what you're asking, as an example… somebody that is used to dealing with that medication…whereas how many locums and GPs have that knowledge?” Interviewee 11 (patient, 67, woman, cancer, hospice). (Theme 1: Q12).
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“I have a GP OOH service… that's the way I would go… I don't really know of any others actually... except the NHS Direct… for a start nobody's got access to any of your notes. So it would never occur to us to ring NHS Direct…” Interviewee 12 (patient, 62, man, cancer, primary care). (Theme 1: Q13).
The good old-fashioned doctor: relationship continuity
Interviewees’ reports invoked a sense of loss of the halcyon days when the ‘old-fashioned doctor’ knew the family and provided a sense of ‘relationship continuity’ (box 4: Q4). Participants’ who spoke about the importance of a known GP described how times when they were not available were hard to accept (box 4: Q5). Being ‘known’ could mean that their ‘suffering’ would be recognised more readily and this was also associated with being ‘listened to’ (box 4: Q6). A few participants spoke about not accessing OOH care and waiting for in-hours care to improve the probability of receiving care from their own general practice (box 4: Q7).
Management (and information) continuity
Being known was described as essential to good clinical management. It was deemed important in terms of having the necessary insight into an individual patient case and the ability to use that insight to make the best management decision. Access to notes was described as important and central to quality care and belief in this provided a strong deterrent to using services without such continuity (box 4: Q8). Participants spoke about the possible impact that not being known could have on care decisions (box 4: Q9), and the need to describe medications to healthcare practitioners not known to them was difficult (box 4: Q10).
‘Care by strangers’ during OOH often involved participants having to retell their often complex illnesses at a time when they felt most vulnerable (box 4: Q11). Concerns about a lack of ‘management’ or ‘informational continuity’ were frequent and poor continuity was described as threatening or disrupting communication with real implications, such as obstructing the ‘bridge’ to ‘separate care events’.24
Although participants’ own general practice was characterised as knowing them and, hence, well equipped to communicate appropriately, advice was sometimes described as the remit of specialist (and rather inaccessible) services (box 4: Q12). Generalist services such as NHS Direct were mentioned frequently as one of the ‘first line’ sources of help OOH, but it was described as an inferior option due to call-takers’ lack of knowledge about their individual history (box 4: Q13).
Theme 2: key mediators of OOH use and reluctance to use OOH services
Overall, participants were reluctant to use OOH services and this was mediated by a number of factors. Continuity of care and concerns about discontinuity were interlinked with the mediators.
Key mediators of use: prior poor experience as a deterrent for using services
Some participants described how frustrating and worrying waits for OOH services had been on previous occasions and how such experiences had eventually prevented them from calling OOH, preferring instead to cope alone (box 5: Q1). Indeed, experiences of waiting for services once contacted were described as at odds with the urgency of the reason for contacting services in the first place (box 5: Q2). For some, previous poor experiences of treatment OOH (away from their home) often resulted in a desire to stay at home, whatever the consequences (box 5: Q3). For many, OOH care appeared to mean care outside of their home, in particular hospital/Accident and Emergency(A&E) care, which is not of course necessarily the case. Fear of hospital admission pervaded a number of accounts based on previous poor OOH experience or fear of dying in hospital rather than at the chosen location of home. Indeed, such was the desire to stay at home that some participants spoke of holding out until morning (box 5: Q4). They expressed vulnerability about not being known in the hospital environment and a subsequent preference to stay at home, even with serious health problems (box 5: Q5).
Theme 2: Core mediators of out of hours (OOH) use and reluctance to use OOH services
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1. Core mediators of use: Prior poor experience
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Wife “I got to a point really where I couldn't sleep, [husband's name], his deterioration was such that I just stayed with him, I didn't [bother] about ringing anybody. I thought I can't go through this procedure anymore… it took such a time for anybody to come… I don't normally phone unless it's desperately urgent, that's the whole point. I expect someone to come immediately because I've waited too long before I ring”. Interviewee 4 (carer (bereavement interview), 94, man, heart failure, primary care). (Theme 2: Q1).
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“I very rarely ring a doctor out and when you're feeling that bad that you feel that you need a doctor out, (IV: Yes, yes) to be kept waiting all those hours before you actually speak to one, and then know that you've got to wait another 2 or 3 hours (IV: Yes), to me it was a total waste of time ringing them”. Interviewee 5 (patient, 52, woman, cancer, hospice). (Theme 2: Q2).
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“By the time the person got to me from [local area], (IV: Mmm) … I was literally dumped in a ward, (IV: Mmm) and … and the next morning I hadn't seen anyone. (IV: Mmm) That's why, the other night, A [husband] knows very well that I don't want to ever go near [name of hospital] (IV: Right, right) if it's in an emergency. No thanks”. Interviewee 13 (patient, 76, man, cancer, primary care). (Theme 2: Q 3).
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“I self-medicate, um … so providing I can hold out for the rest of the night, I'll send a text to my nurse, um, and she will contact me in the morning…I just went to bed and, um, woke up in the morning and felt comforted because I, my nurse would call me and we would then discuss what I was going to do” Interviewee 1 (patient, woman, 45, cancer of abdomen, hospice). (Theme 2: Q 4).
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“There was no other advice except to go to, go to the hospital really, (IV: Yes, yes)… to actually go to A&E and have to wait in a queue and they don't really know, apart from the bleeding, they don't know what your other conditions are. (IV: No, quite) So I find that very difficult and distressing actually… we said, well never again and [name] said I'd rather bleed”. Interviewee 14 (patient, 79, man, heart failure, hospice). (Theme 2: Q 5).
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2. Core mediators of OOH use: knowledge of services and who to call
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“Well I wouldn't know any other service other than to phone my own doctor (IV: okay). Other than this National Health place but by the time they got here, I might be dead… So I would have to just either phone 999 for an ambulance or phone my doctor's number out-of-hours…” Interviewee 6 (patient, 57, woman, COPD, primary care). (Theme 2: Q 6).
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“I have a GP OOH service… that's the way I would go… I don't really know of any others actually… except the NHS Direct… the only other thing I would do… is to ring 999 if I was that out of breath and collapsing…” Interviewee 12 (patient, 62, man, cancer, primary care). (Theme 2: Q 7).
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“If anything goes wrong between a Friday, say, afternoon and Monday morning, there is none of the specialists available to help…you're left out on a limb really… Um, not to have the people that know you and who've been used to dealing with you and are specialists in that area, available (IV: Yes) in any way to help, (IV: Yes, yes), you rely totally on a total stranger. (IV: Yes, yes) Yeah, I don't like that, either. …I suppose, really, some of these specialists [need to be] available at the weekend… and I don't know if that's a viable prospect, to be honest.” Interviewee 5 (patient, 52, woman, cancer, hospice). (Theme 2: Q 8).
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“I've got knowledge of what's available and I don't think people are always given that knowledge early enough cause you, you don't want to wait until it's too late to get the support, you want to get to know people and get the support you need in good, good time. Um, I'm a good example. Because I was put in contact with the, um, Macmillan sister quite early.” Interviewee 16 (patient, 80, woman, cancer of abdomen, hospice). (Theme 2: Q 9).
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“I was surprised in retrospect that I hadn't been told that [about Out-of-hours service]… perhaps they thought I knew… [Would have been less worried over the years if I'd known]” Interviewee 17 (patient, 67, man, cancer, primary care). (Theme 2: Q10).
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Um …calling somebody at [name of hospital] would probably be quite an idea, um, but, again, they're not doctors, they, they don't prescribe, they just care. Um … so, no, in the end I decided there wasn't anybody, really, who could help me, (IV: Mmm), so I didn't call anybody, I just sent my nurse a text and just hoped I'd survive the night. And I did [gentle laughter from P].” Interviewee 1 (patient, 45, woman, cancer of abdomen, hospice). (Theme 2: Q 11).
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“WIFE: I was a bit … .um, a bit confused as to whether to phone … um NHS Direct or whether to phone the out-of-hours service. (IV: Mmm, mmm) I don't, I don't think I've ever used NHS Direct. I wasn't sure whether that would be more helpful or not”. Interviewee 14 (patient, 79, man, heart failure, hospice). (Theme 2: Q12).
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“W: Well, I mean, they just said as he wasn't undergoing chemotherapy at the moment, um, ring the GP and we rang the out-of-hours people and it all worked very smoothly ”. Interviewee 8 (patient (and carer), 76, man, cancer of colon, metastatic spread to liver and lung, hospice). (Theme 2: Q13).
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“We have an agreement with our own GP, Dr. H, when he's here at [clinic] on Friday mornings of each week, he'll come to see us from down the road after surgery on that Friday morning which we've used once” – Interviewee 18 (patient, 69, woman, cancer, hospice). (Theme 2: Q14).
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4. Core mediators of OOH use: knowing when to call
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4.1 Knowing when to call: a rationed approach to service use
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“…well I wouldn't bother really too much… I don't like to because they might be busy, they've got other patients… I don't know, I don't know how much one should [suffer or wait]” Interviewee 3 (patient, 64, woman, cancer, primary care). (Theme 2: Q15).
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“I'm aware that the district nurses have an awful lot of people to see… so I don't like bothering anyone until it's absolutely the last minute… until I knew that I could use the out-of-hours number, I did get quite concerned at times… now that I've got a number it is relatively simple to actually get a message through to them” Interviewee 17 (patient, 67, man, cancer, primary care). (Theme 2: Q16).
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“It depends what, if it's something you really are desperate about... I try to remember, and I don't say I always do, but I try and remember I'm not the only patient”. (IV: OK) Interviewee 16 (patient, 80, woman, cancer of abdomen, hospice). (Theme 2: Q17).
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Carer describes difficulty knowing whether problem constitutes an emergency: “IV: Have you delayed calling OOH services in the past? C: Oh yes, in the past definitely. I have taken responsibility and waited until 8.30am the next morning to wait for the GP. It's common courtesy not to call out services when not an emergency… but wish (in hindsight) I had had the courage to call 999” Interviewee 19 (carer bereavement interview, patient woman, 77, cancer, primary care) (Theme 2: Q18).
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“Well the out-of-hours doctor was sitting around there with nothing to do. [laughter from W and IV] She was quite glad to have a customer because, I mean, obviously they're on call, they've got to be there for 2 or 3 hours, (IV: Yes), or whatever”. Interviewee 8 (patient (and carer), 76, man, cancer of colon, metastatic spread to liver and lungs, hospice). (Theme 2: Q 19).
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4.2 Knowing when to call: Determining their need for OOH services
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“The [name of ward] or the cancer … um, ward, um, is … does have an out-of-hours number but in an emergency. Now what do you call, what do you deem as an emergency. (IV: Mmm) Um, I'm feeling unwell, I'm feeling really unwell and I'm quite a strong person so when I'm feeling like I need to call somebody, I must be unwell but I know what's wrong with me and I know probably in a couple of days I'll be OK. Um, so I don't feel it's serious enough to disturb everybody at the [name of ward]”. Interviewee 1 (patient, 45, woman, cancer of abdomen, hospice). (Theme 2: Q20).
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“Well I try to handle my emphysema. If I got so frightened, sometimes it is very scary, well then I would just phone… I'm getting to the point that I've nearly given in and all because of the choke. I've nearly given in twice this time… getting to the point when I can't handle it” Interviewee 6 (patient, 57, COPD, primary care). (Theme 2: Q21).
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“Husband: we're, we're of a generation that, that doesn't want to bother people unnecessarily (IV: Yes), unless we have to, aren't we? (W: Absolutely) I mean, I think we're people of our generation, we're in our late 70's now, and, um, and I think most of our contemporaries would feel the same, wouldn't they? (W: Yes) (IV: Yes)” Interviewee 8 (patient (and carer), 76, man, cancer of colon, metastatic spread to liver and lung, hospice). (Theme 2: Q22).
Key mediators of OOH use: knowledge of services and who to call
It seemed many of the participants recruited from General Practices knew about and relied upon OOH services that could be accessed through A&E departments, through their GP surgeries and NHS Direct. Of these, the most acceptable and least feared option was accessing GP OOH services despite it not being their own GP who conducts home visits. However, there was still a sense that a call would be made only as a last resort and participant reports suggested low expectations in terms of the response they would receive (box 5: Q6 and 7). Overall, accessibility to specialist OOH services was problematic, and this was intertwined with a concern for continuity of contact, rather than relying on advice from a ‘stranger’ (box 5: Q8). While some described being informed about whom to call in an urgent situation (box 5: Q9), others reflected on how much more confident they would have been had they known about their local OOH services (box 5: Q10).
For some, not knowing who to call resulted in them managing on their own, and sometimes in quite fearful situations (box 5: Q11). Transitional points of care, for example ending active treatment, were described as difficult for patients and carers (box 5: Q12). While positive experiences were reported (box 5: Q13), these were related to in-hours arrangements (box 5: Q14).
Key mediators of OOH use: knowing when to call
Two key factors influenced participant use of services in regard to ‘knowing when to call’.
Knowing when to call: a rationed approach to service use
Participants described not wishing to put extra strain on limited health services, and this seemed to moderate their use of OOH services (box 5: Q15–16). When asked about reasons to not use OOH services, some spoke explicitly about the hard-pressed nature of the National Health Service and about only using services when desperate (box 5: Q17). Carers also discussed the dilemma of whether to call OOH services, sometimes taking on the responsibility to defer seeking help until in-hours services could be accessed (box 5: Q18). Just one participant discussed their sense of comfort about using OOH services (box 5: Q19).
Knowing when to call: determining their need for OOH services
Living with a long-term condition meant that some participants struggled to know how legitimately they could call OOH (box 5: Q20). Participant narratives invoked a stoic self-management, again sometimes resulting in quite fearful moments alone. One participant connected phoning for help when facing a serious exacerbation of his chronic obstructive pulmonary disease with ‘giving in’ (box 5: Q21). The age of participants (the majority fell between 60 and 80 years) may of course have shaped such reluctance to use services and the difficulty of evaluating their legitimacy. One participant spoke explicitly about the importance of a ‘generational mindset’ when discussing service use (box 5: Q22).
Discussion
Continuity of care was highly valued. Participants described the importance of being known, and the positive implications this could have for the quality of care they received and the trust they had in their care. Various factors deterred participants from seeking help or advice from OOH services, despite having health concerns that may have benefitted from medical assistance. Previous poor experience, limited knowledge of services and knowing who to call and, indeed, when to call were all factors that shaped participants’ use of OOH services.
Lack of informational continuity will hinder implementation of the ‘end of life’ pathway, since services may not be aware of patient and carer preferences as recommended by the End of Life Care Strategy.6 Barriers to accessing OOH services could be overcome by improved communication between services (in-hours and OOH) and service users. Specifically, it is imperative that those with complex needs are told about OOH services and systems. OOH providers need to have robust systems to flag patients notified to them as having particular needs and the usual teams who care for these patients need to update this information consistently (for instance, by consistent use of GP OOH handover form as encouraged by GSF).
Findings in this study confirm those found in earlier research. The reluctance to call OOH services by service users, and doubts about the legitimacy of their need for services have been found in studies conducted both before and following the General Medical Services Contract.11 ,12–14 Our study echoes these findings and much earlier work of Parsons’25 when he described the ‘sick role’ and how it entails certain rights and responsibilities, including an obligation to seek medical help when appropriate. In practice, knowing when a problem is severe enough, taking action and conveying it as a legitimate or ‘doctorable’ problem once help is sought can be incredibly complex.26–28 Certainly, many participants positioned themselves as having downgraded epistemic status or understanding in terms of knowing quite when their symptoms were severe enough to merit action and how to best seek help once the severity had been ‘realised’. Relational, informational and management continuity were interwoven with these concerns. Some perceived OOH services as ‘resource’ limited and unable to provide the specialist treatment needed.13 OOH services were also depicted as impersonal and not person-centred. Shortcomings such as these could again deter use of OOH services during distressing times.12–14 An undesirable outcome such as hospital admission once participants had decided they could legitimately seek help was described as a strong deterrent to future use.
The study is novel in its use of a longitudinal methodology. The prospective approach enabled identification of times when people decided not to access OOH services as well as times when participants accessed services very soon after events had taken place. The recent nature of the ‘events’ seemed to help respondents recall OOH incidents with some ease. People who had not used services also provided an important insight on how and why not everyone thought to be nearing end of life will make use of services. Regular contact between interviewers and participants developed a relationship that facilitated in-depth discussion at very difficult times. That some bereaved carers wanted to share their stories with the team provided some indication of the value of a longitudinal approach.
Some potential participants declined to participate because they did not see themselves as users of OOH services, potentially biasing the sample towards those patients who had already experienced such services or anticipated using them in future. It is possible that the practitioners responsible for the identification of eligible participants contacted patients who were likely to present as ‘good’ study participants, resulting in a selection bias and sample homogeneity.29 However, there is no evidence to suggest this was the case.
The recruitment was low with a 31% response rate (including those that opted out of the study), of which 19% consented to participate. However, retention was good, with just three withdrawals, comparing well with the retention reported in some studies.30 Regular contact with the participants may have increased retention. The inclusion of carers according to the preference of the index patient may have also facilitated retention.
There is confusion about who to call OOH. Murray recommended that patients should be informed that the OOH service has been notified of their condition and any agreed plan of care.13 Specialist providers need to give clear information regarding whom to call and should provide information to OOH services to enable effective care.
Guthrie et al20 provide a strong argument for the importance of relationship continuity and suggest that this is important to informational and management continuity. They describe how patients value relationship continuity because, for example, they can avoid having to repeat complex histories. Guthrie also suggests that relationship continuity has been sidelined in policy and needs to re-establish its importance in practice. Participants lamented the loss of the ‘old style personal service’; however, addressing the informational continuity can go some way to mitigating this loss. Indeed, strengthening informational and organisational continuity is essential to future care if the care for patients nearing end of life continues to be provided by generalist services.
Routinely passing on up-to-date information about the clinical condition and preferences for care of patients on a general practice's palliative or supportive care register is crucial. There should be discussion with patients and family, including confirmation of their consent for transfer of information and the content of their records. Reassurance that OOH responders will already have this information and will give their case priority may help to overcome reluctance to call.
Conclusions
Relationship and management continuity are vital to the process of optimising the patient experience of OOH end of life care. Discontinuity of care was common and it fuelled a reluctance to contact OOH services and once accessed discontinuity was associated with a range of difficulties.
Acknowledgments
We are grateful to the participants, the hospices and General Practices and Primary Medical Care Group, Faculty of Medicine, for funding the research.
Reference
Footnotes
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Contributors MVM was the principal investigator, who had the initial idea for the study, with CC-S. GML led and supervised the qualitative work conducted by both fieldworkers NKS and HA. GML led the writing. All authors contributed to the project steer, analysis and write up of this research.
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Funding The Primary Medical Care Group, University of Southampton.
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Competing interests None.
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Ethics approval Research Ethics Committee approval reference: 06/MRE12/3.
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Provenance and peer review Not commissioned; externally peer reviewed.
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Data sharing statement Ethics committee approval was sought to collect data to generate interview data to answer the key research question. We do not have permission to share transcribed interview data for secondary analysis.