Whilst all health and social care workers should have basic knowledge and skills in end-of-life care, sometimes these are lacking, including a lack of confidence in communicating at end of life. For some patients, basic skills may not be adequate to meet their difficult or complex needs. Palliative and end of life care has developed into a specialty area of knowledge, skills and ethos, and this distinctiveness is prized by HAH organisations. However much of this expertise still resides in cancer care and patients with other illnesses, such as dementia, may present challenges to staff and organisations. Some services (HAH and non-HAH) may also lack time to offer personalised and patient led care, while commissioners may prioritise equity of access across the population rather than time and expertise. To add value to the whole system of care, HAH services need to provide expert knowledge and skills in end-of-life care with a suitable ethos to support this care. This is enabled by experienced staff who have spent a significant proportion of their time in EOLC so that patients and families trust them. Staff at all levels, including volunteers, are suitably trained including appropriate communication skills so that they can create an environment where patients and carers have confidence and feel they are in expert hands. HAH services value the time to offer personalised patient led care, leading to better patient and carer experience and sense of agency.
Know-how, experience, and expertise
HAH services identified and prized their specialist status:
…we are the only specialist provider and so HAH is the only specialist palliative/end of life care service in the area….
HSP02 (Chief Executive)
And the patient and their carer or family were the ultimate beneficiaries of the know-how, experience, and expertise of HAH staff.
It’s a skill level isn’t it, to be able to detect, because I hadn’t detected it and I’m his wife. [HAH staff] had. She said no his breathing’s changed, and she knew. So I was very grateful that she was there because […] she had had quite a deep nursing background so she had the skill, so I’m very grateful for that.
PC48
Time
The resource of “time” was a context which all HAH services prioritized but was a particularly strong theme in the smaller providers. It was also a mechanism which achieved high quality care and confidence in the support that patients and carers received.
I keep coming back to time. I just feel time is such a massive, massive factor. And that just allows people to open up more when we’re there each day. They can see that there’s no rush. …It’s priceless isn’t it – time.
MSP001 (Registered nurse)
It was very good, very professional. They took me and my husband at our pace.
LC01
This was such a valued resource that patients and carers were prepared to compromise in some respects (e.g. not knowing what HAH care they will receive that day until the morning of the day or accepting a reduced service when they knew the HAH service was under pressure, provided it was clearly communicated).
[T]hey always let me know what was happening …and if they might say ‘oh we’ve got to go to [another area] first, would you like us early or later, I said oh can you come later now that settles him down for the night. They said ‘no that’s fine with us’ and we sort of worked it all between us it was brilliant…
LC29
Again, time pressures were well managed by HAH organisations through consistent communication with patients and carers (e.g., if they are going to be delayed).
[I]f there was going to be a change [HAH] ring you up and say “look we’re running about twenty minutes late, we’ll be with you at such and such a time”. And that even went for the weekend, absolutely brilliant…
MC10
Training
Both the experience in end-of-life care and the training of HAH staff contributed to making patients and carers feel they were in expert hands which inspired trust and confidence.
Even you know doctoring dad’s pyjama trousers so they could pass tubes through…and things like that it was…again without that knowledge you…without their support we wouldn’t have even thought of things like that….
MC10
Providing training to up-skill staff outside the HAH service was also seen as important.
Supported staff
Policies and processes in some HAH services supported and allowed for extended roles (flexibility of roles) as necessary to meet patient needs. This feature characterised services that prioritised responsiveness to patient need rather than a more rigid service structure and functioning, and may also be a feature of smaller, potentially nimbler organisations. For example, one smaller service had set up a new urgent care service.
…the Urgent Response has changed the culture of the HAH Team because they recognise that they’ve got the skills to be able to go out and deal with things urgently, so they don’t need to refer onto a CNS to do that, but actually we trust and respect them to go out and do that. It’s changed the culture of the wider team because it’s bridged how they work together and improved the working relationships and it’s changed our culture of care…we know that within the total service that we can respond much, much more quickly.
MSP005 (Community Team Leader)