Table 2.

Stakeholder recommendations and themes across the focus group discussions and consensus survey free text comments

What are the potential benefits of short-term integrated palliative care for the frail elderly with non-malignant conditions?
Recommendation 1: To ensure older people are better informed about choices with opportunities to plan future care and to be empowered to make decisions (median: 9, IQR: 8–9)
Holistic discussions	Everything, across the board. They've got a particular thing like back pain, they need someone that really understands back pain. If they've got a spiritual problem, they really need someone that is like neutral and can share whatever. (FG-VC6)
	Extremely important because it allows individuals to take control of their lives and that is crucial for mental wellbeing. (CS-VSR)
End-of-life discussions with skilled professionals	But maybe have that additional expertise about being able to raise the issues of end-of-life, based upon their experience and things. (FG-VC1)
	Offer them [the older person] the choice. Because there's a certain pride and independence still and dignity that they are not being brushed to one side and being dealt with in the same way as everyone else; that they're being heard”. (FG-VC5)
	The more information offered to the family and older patient/person can only be to everyone's advantage. To ensure this is given at the right juncture and carried out sensitively would prevent awkward hurried conversations or worse still making decisions on behalf of the person's future care without previous knowledge of their wishes such as patients with memory loss or cognitive impairment. (CS-CN)
	Could I just say, just with dying, I mean surely there must be different strategies for confronting your own mortality? Some people won't ever want to be confronted with it…Other people actually will want people much more practical about it and recognise the things, wanting the people to acknowledge them…But within this set of people dealing with this situation, there needs to be somewhere the capacity to confront those different strategies to know when it's appropriate to talk about the things. (FG-VC4)
Recommendation 3: To increase carers’ sense of reassurance and support by assessing a carer's needs, identifying the assistance required and involving them in discussions about plan of care (median: 8, IQR: 8–9)
Inclusion of carers in discussions and reassurance	…if it comes to a situation also where someone may be dying, if you're [carer] somehow not included in it, then you could feel not being able to grieve properly. (FG-VC1)
	Hopefully the integrated service will be inclusive of carers - who may not share views on ‘preferred place of care’ and who may need reassurance about the levels of care and help that might be required in caring for someone at home. (CS-SN)
	His wife needs reassurance and support and the daughter needs to be kept in the loop to know what's going on because she feels, obviously, her contribution is limited because she's got her family to take care of. But still, she will still be worrying though she's not hands-on. She would still be anxious and worried, so she needs support. She needs the reassurance that her parents are both getting the help that they need. (FG-IC1)
Carer well-being and enabling carers to care	Carers who fall ill because of stress will not be able to fulfil their role, and it is therefore important to support them. (CS-IC)
	Sometimes I think, ‘Oh, you must go down there. You must do this,’ and I think, ‘No, I've got to go out for the day and I've got to look after my mind because I shall lose my mind otherwise with it,’ because you could drown in it. You absolutely drown in it. (FG- IC2)
	I kept going to his oncologist. I didn't go in with him but I wrote to him in the end and I said…well really, it was a letter of plea saying, “I just don't know what to do.” (FG-NH5)
Carer as advocate for older person	….Nothing will take the place of a loyal family member. That is gold dust, and you will never replace that, but unfortunately not everybody's got a family member. (FG-IC2)
	…if any of us get to the situation of Mr. Wood [in the vignette], what we need if we're lucky, is someone who's looking out for us. In his case it could be his daughter. Someone who will go to the hospital or go to the surgery and knock on the door until somebody does something”. (FG- VC2)
When is the best time to refer frail older people to specialist palliative care?
Recommendation 16: When an older person is living with increasing symptom burden (including emotional/mental), which the community nurses/GP are struggling to manage, or are causing concerns about planning future care (median: 9, IQR: 8–9)
Accumulation of multiple problems	The service would be extremely beneficial to those with complex needs and symptoms where generalist health care professionals may be having difficulty in managing these needs. (CS-A)
	…people that really need palliative type care usually have multiple conditions. It could be heart and depression. It could be like deafness, blindness but they all have multiple things going on. (FG-VC6)
Mental frailty and emotional support required	Physically/medically ill patients are within my remit but it would be a helpful tool for me and my team to be able to refer on if we had a patient who required emotional or mental support. (CS-CN)
	There's also a mental frailty, a loss of confidence. So when you may have had a small health problem, getting back over it again, not only physically to recover but a loss of confidence in doing things that you want to, and going out may be or even within your flat.(FG-VC7)
Recommendation 10: Early when an older person is increasingly struggling to manage at home because they live alone/housebound (median: 8 IQR: 7–8)
Improves familiarity and continuity with the team	“[Receiving specialist palliative care later] I think they'd be more resistant, whereas I think if they'd already had that first input they would familiar; Oh yeah, we need a bit of extra help. We had that last time.” (FG-VC6)
Discussing end-of-life earlier to anticipate and prepare	… it just occurs to me that some of the things, conversations about dying or what you'd want, much better conducted when you're not really going about to die. (FG-VC1)
	Listening at the right time when you're able to talk and you haven't got the pressure when you're just feeling okay but you can talk. Who is going to talk sense when we've got crippling back pain? You're just going to want solutions but people just are not being heard and that's part of the lack of respect that we're getting in society. No one has the time to actually hear you and that's what people need. (FG-VC6)
SPC may not be required earlier	May not require specialist input at this point. Needs should be assessed by primary care team. (CS-PMC)
How to best deliver integrated care between specialist palliative care and the primary health care team?
Recommendation 18: Fast and easy access to specialist palliative care advice and support through a single phone contact point (median: 8.5, IQR: 8–9)
Importance of fast effective treatment	For the person/carer as well as other health care professionals. (CS-VSR)
	Fast effective treatment is of the utmost importance. (CS-CN)
Out of hours access	I mean, you can't just ring an ambulance and say…the paramedics are marvellous but can't be ringing them twice a day and saying he can't breathe because they can't do anything more. (FG-NH6)
	This access needs to be well publicised and available 24 hours a day, as crises usually occur at night, or out of office hours. (CS-IC)
	Well hopefully, some degree of accessibility when he needs weekend attention…when he can't access his GP. (FG-VC3)
Recommendation 20: Co-ordination of services through a key worker from the SPC team acting as a single point of contact for the patient and family to avoid confusion and maintain continuity across care services (median: 8, IQR: 7–9)
Key worker assigned to patient for continuity of care	Yes. Too often patients just don't know to whom to turn. (CS-VSR)
	The service still requires very good communication between ALL teams, as one person missing, through sickness or leave, should not mean that the patient and family have no-one to turn to. (CS-IC)
	… there needs to be someone there saying, “This is my person”. (FG-VC1)
	If there is always that person in their life, so if there is a support and it's always around then when that support walks up to see them when they're facing a crisis or got to make a decision, in their mind they're like, ‘Oh, it's all right. [Clinician's name]’s here. All right, now,’ in their mind because they know that they can trust what you say. (FG-IC1)
	Because I think older people are very much aware of continuity. Old age doesn't like too much change and that's where a lot of care falls down. The continuity is simply not there. (FG-VC3)
Uncertainty over who should be responsible for key worker role	V important but should be the most involved member of the team/the one with the relationship which may or may not be specialist palliative care. (CS-H)
	No. The key worker must come from primary care. (CS-PMC)
	Co-ordination could be via GP still if only limited visits anticipated. Who to contact and when should be part of future care planning and information given to carers. (CS-SPC)
	This [a key worker] is extremely important but does the key worker need to be from the specialist palliative care team? Shouldn't it be the service/person who knows the patient and has the most contact? (CS-SPC)
Concerns over short-term nature of SPC providing this role	Yes, but I'm not sure that this will be effective for short-term input only—the single point of coordinated contact needs to be long standing to be effective. (SC-GP)
	But could be problematic especially as this is a short-term service. (SC-A)
	I think this could add to confusion. (CS-CN)

Participants’ ID codes are prefixed by the data collection method (CS for consensus survey free text comments or FG for focus group discussions) and suffixed by their role (VSR,  voluntary sector representative; VC,  volunteer carer; CN,  community nurse; IC,  informal carer; NH,  nursing home resident; SN,  other specialist nurse, e.g. heart failure; A,  academic/researcher; PMC,  palliative medicine consultant; GP,  general practitioner; H,  hospice e.g. education and management leads; SPC,  specialist palliative care nurse). IQR,  interquartile range.