Fifty-six patients and 25 case-linked carers were followed through serial interviews with patients alone (n = 125), or as joint interviews with their carer (n = 56) (Table 1). Single interviews were also conducted with 17 clinicians. Four key challenges were identified as hindering effective coordination of care.
Patient identification as a prerequisite for coordination of care
All participants were recruited as being appropriate for a palliative care approach according to current policy criteria, but few had actually been formally identified as such. Only patients with advanced cancer were likely to have been identified. They appeared to receive well-coordinated care and had a good understanding of their illness. Other patients lacked a clear understanding of their health problems, often regarding themselves as simply ‘getting old’. Patients with multiple non-cancer conditions tended to focus on living in the present and self-managing, sometimes actively resisting additional help:
Patient (W2):‘I keep saying there’s nothing wrong with my heart. Well you would expect some pain or something, surely? I was tired and I still am a bit tired. But I’m getting old, you can’t do what you did.’
Carer:‘I personally don’t want anybody to come in because we cope ourselves and the way we cope is because we cooperate with one another you know. The way I look at it is it’s for better or worse isn’t it?’ (Carer of E2)
There was a clear mismatch between policy and guidance around identifying patients systematically for palliative care and the actual practice observed:
GP:‘The usual threshold we have got for our register is: “Would you be surprised if this person died within the next year?” And I can’t say I was altogether surprised. I mean, he did have a pretty extensive vascular history and peripheral vascular disease. So, he is probably one of those patients who quite commonly slips through the net, when it comes to palliative care needs.’ (GP of patient E32)
Another barrier to identification for palliative care support was that many (but not all) GPs understood palliative care as meaning terminal care. GPs therefore struggled to articulate when someone might have palliative care needs:
GP:‘But in some ways, she has got palliative needs, but they are not quite palliative, if you know what I mean. So I don’t have her on a palliative care register, because to me that’s more people where there are obvious end-of-life issues.’ (GP of patient E5)
When asked about ‘palliative care’, most patients and carers associated it with care where there is no cure possible and death is imminent. This often led to resistance to engaging with a palliative care approach:
Lung nurse specialist:‘You have patients who live for years and yet people with mild or moderate [disease] who unfortunately, that one exacerbation causes pneumonia and they end up being the ones to go. So no, I, I think it’s the prognosis ... if end of life, [means a ] need to know how long you have, or estimated date unfortunately before you pass away, then I’m not sure how we can get around that in COPD.’ (Outpatient case study)
Patients and their family carers showed little understanding of the benefits of palliative care. Their response to questions about future planning was that they preferred to ‘stay positive.’ It seemed that they perceived talking about dying as negative in itself:
Patient (E6):‘Nope, nope nobody has ever … said anything to me about that and I’ve never broached the subject cause I think like I’d rather be positive. I think “I’m not going to get worse”.’
However, some patients with cancer had been offered the opportunity to discuss the future and appreciated being able to do so:
Patient (K5):‘Well the hospice people, they’re supposed to be coming next week to talk about the future, what preparations I make should things go worse and things like that ... I have already, my daughters they already know my wishes if things don’t go right and how I would like it to go.’
A final barrier to identification was limited contact time with the same professionals despite multiple attendances at different health services. In secondary care, the imperative to move patients rapidly through the hospital system and the focus on acute, presenting clinical problems mitigated against identification of patients who would benefit from a palliative approach:
Palliative care specialist:‘they’re in an acute situation where you’re managing the acute problem. … So really the only other decision they’d make down there is whether they’re for CPR or not, which is an important decision if they don’t come with a form in case they do have an arrest, they need to decide that.’ (Hospital case study)
Patient experiences of short consultations in primary care and lack of knowledge about the potential benefits of palliative services meant that neither patients nor family carers had considered initiating a discussion themselves:
Patient (E13):‘I remember a time when you could go to a doctor and talk to him and you know, just give him your worries and what did he think? Can’t do that now because they haven’t got time. You know, you get your 2 minutes or 3 minutes or whatever, and then you are out.’
Patients, family carers, and specialist nurses as coordinators of care
In most cases a family carer or the patient took on the primary coordinating role. The family carer kept track of medication, collaborated with professionals and shared information as well as giving physical care. This role was demanding and crisis admissions were often triggered when the carer could no longer cope:
Patient (E33)[talking about his carer]: ‘She was exhausted [looking after me]. By the time I went to hospital, she was needing the hospital as well, just about.’
Patients without a family carer often struggled but there were exceptions:
Patient (K14):‘But when I am ill I don’t go to the hospital I stay in the house, I do everything myself, take my medication … I have everything here, I’ve got a nebuliser, I’ve got oxygen …’
Family carers often found coordinating care to be frustrating, because communication was inconsistent or information about the patient was not available. However, this improved as they gained experience:
Carer:‘So we’re continually having to tell them, and the frustration of saying, but surely you must now have that on records?’ (Carer of E13)
Patient (W14):‘I know Dr X is on the phone on a Thursday so if I’ve got any quibbles I just phone up on a Thursday. She tells you how it is, you know, she doesn’t mess about. It’s a good doctors’ up there.’
Patients with a nurse specialist involved were more likely to indicate that they felt well cared for:
Patient (K12):‘I can ring [nurse specialist] up and she could ring me up, you know, she rings me up now and again and asks me “How are you getting on?” and everything else, you know. But, you know, she’s good as gold.’
Carer:‘The heart nurse is great, her and her colleagues, I can say nothing but good about them, they know what they’re doing, they’re better than the doctors actually. You can say what you want and they listen ... and I think that listening is important.’ (Carer of W6)
The GP was sometimes recognised as playing a key role but usually the GP was only consulted for an acute problem with patients ‘not wanting to bother’ a busy doctor:
GP:‘I think our involvement has been quite peripheral. But if he, you know, if he has got a problem or he needs us, he uses us. But if he doesn’t need us, then he doesn’t bother us. That seems to be the way he wants it to be.’ (GP of patient E1)
Patient (E17):‘You can phone in and the doctor will talk to you or you can phone a nurse and they will talk to you. “Please don’t make an appointment unless it is absolutely necessary.” Well, what do you know is absolutely necessary? I have been rushed into hospital because I have left it too long, because I won’t bother them.’
Sometimes reluctance to call a GP was matched by a patient perception of reluctance of the GP to visit when requested:
Carer:‘I don’t believe in calling doctors out if there is no need but I do feel that sometimes when I’ve rung up you have to discuss things over the phone and I think “why don’t you come out”. But they don’t you see.’ (Carer of W12)
Transitions and communication between care settings can challenge coordination
Unplanned hospital admissions and discharges caused frequent problems in coordination. Admissions could bring unexpected medication changes, unmet patient and family distress, and a feeling of being in an institution that was too busy to offer adequate care:
Patient (E20):‘I mean, they took me off morphine tablets that I had been on a long time. And they made me so ‘doolally’ that my family thought I was going to end up in a nursing home. And at the back of my mind, I knew there was something happening to me, and I know that I wasn’t right, I couldn’t speak right to my family.’
After discharge, patients reported difficulties in re-establishing support at home and many were disturbed by a lack of follow-up in primary care. When there was contact, patients felt that the GP had little recent information. Patients and carers were frequently unsure of whether a GP or nurse would visit and whether they needed to act themselves:
Patient (K6):‘There is no follow-up. I mean I get a copy of the letter and I’ve never been asked to go to my GP surgery to discuss my medication or the recommendations the consultants have made.’
Patient (E2):‘Well I would have thought that a doctor would be up right away, but no he [patient’s carer] had to phone. And he [GP] had a letter for it, but I think maybe they expected me to go down but I couldn’t.’
However, some hospitals and primary care teams did provide good coordination:
Carer:‘[at discharge] they gave me a letter for the doctor and they gave me a letter for the district nurse and they gave me a discharge letter and I took them along that afternoon. The district nurses are marvellous and they arrived the next day, but I haven’t heard from the doctor at all.’ (Carer of patient E4)
Patient (K3):‘I think my own local doctor, my GP, who I went to see, he’s kind of pushed it on a bit, you know. He’s an extremely good doctor.’
Service organisations and reorganisations challenging coordination
Professionals universally experienced difficulties in communicating across institutional boundaries and found information sharing to be inconsistent. In an individual locality, several different systems for delivering care and ensuring continuity operated simultaneously, with clear potential for confusion:
Palliative care nurse:‘It was very difficult to get information from the [hospital without electronic record sharing]. It needed faxes to be sent, secretaries to be contacted and so on. There was one oncologist there who was very good at sending detailed information to the Macmillan nurses.’ (GP surgery case study)
Issues of professional autonomy made coordinating care between services challenging. Hospital doctors were sometimes reluctant to suggest that a patient might have palliative care needs or direct a GP to visit a seriously ill patient being discharged home for fear of imposing their views on GPs.
Initiatives such as shared registers and electronic records were considered by clinicians to have improved information sharing between primary and secondary care. However, communication between services was often inconsistent with staff unsure of whom to communicate with, and what information should be shared. During the general practice study, the community nursing service was reorganised into geographical zones with a central telephone hub. A major impact of this was that district nurse participation at the monthly palliative care, multidisciplinary team meeting decreased significantly and sometimes GPs, patients and carers were uncertain about how to contact the appropriate district nurse.
Carer:‘Every time I ring, when I eventually get through because apparently it goes through ambulance or fire places, I think it’s over in Birmingham, and then it has to come back here, but the clinic is only down the road. It’s crazy, if I could lift him and get him down to the nurse ... You know, it’s complicated now.’ (Carer of W6)
