There is a complex system of health and social care providing end of life care for patients in the community. Furthermore, hospice services are often thought of as a building and there is less understanding of HAH services. HAH functions in a society where there is a fear and stigma around death and dying, (particularly in some communities), with potential referrers reticent to have conversations with the patient regarding prognosis. To increase referrals in general, and in particular of those that are poorly represented in hospice services, HAH needs to actively market its service to professionals and the public through clinical and public engagement. Referral systems need to be as simple as possible and not require complex transfer of information.
Raising awareness
Organisations employed a range of strategies to achieve knowledge and understanding of the HAH service and its role, e.g.:
- Allowing self-referral and raising awareness to the public directly (via phone number, website, GP, previous experience of hospice services). At times people who became aware of the service were able to “get a foot in the door”, even if they were not able to self-refer directly.
- The fundraising element of the organisation used events to market the service and educate the public about its role.
- Clinical staff had an important role in encouraging referral to the service through their day-to-day work and interactions with colleagues and the public.
One site reviewed the demographics of patients coming through the service and acted:
…we knew that there were patients in the local community, the Chinese community, not far from us that weren’t accessing any of the services…. So, a couple of the HAH nurses went there and spoke to the residence … we talked specifically to them about HAH and the sorts of things we could offer… to try and break down some of the barriers.
MSP04 (Head of Service Improvement and Quality)
Fear of death and dying
This context was well recognised as a backdrop in which all the HAH services operated.
…you’d be surprised how many local people just don’t know we’re there because people go around quite blinkered you don’t want to be involved with a hospice unless you need it. And we’re trying to dispel those kinds of myths and get people aware of what we do.
GSP07 (Fundraiser)
The provision of training for staff outside the HAH service was one response to this, explored further in the “Knowledge, Skills and Ethos” section, but also relevant here.
Getting to the right patients and equity
To continue to function effectively and equitably, services had referral criteria and strategies to discharge or transfer care out of the HAH service. Several services, particularly the larger, 24/7 services (model 1) in this study, had patients under their care for longer periods of time (> 6 months) and had patients with varying levels of need over time. While carers appreciated early support, paradoxically this left carers if needed to proactively contact the HAH between visits and many of our carer respondents from these services had less contact with the service:
…when they made their appointments said oh we’ll come and see you in such-and-such a… you know, in a few weeks’ time and in-between we didn’t really need to ring them for anything.
PC30
A range of strategies were employed to manage demand for HAH, including:
- admission criteria, which varied between HAH services, in terms duration of service, patient factors, and the funding source;
- having trained triage staff to manage service admission;
- the provision of clear information about referral on to other services when the HAH service was not, or no longer, deemed suitable;
- categorising patients’ levels of need and adjusting the service level accordingly and/or
- the utilisation of other hospice services (e.g. day care).
One site triaged patients into six categories, according to their level of need, from ‘actively dying’ to ‘three monthly monitoring’:
…we have our ‘Blues’ who don’t need a face-to-face but you need to keep in contact with them because they’re the type that will hit crisis and won’t think about phoning in, so they have like a monthly phone call…
ESP01 (Deputy Director of Care)
Another site employed strict criteria in terms of the duration of their input:
We have a four-week End of Life criteria, … so we will review at two weeks and look to see whether or not people have had onward referral to CHC or Social Services and we will pull out at four weeks if appropriate. Now if it’s four weeks and somebody’s clearly dying then we would stay, but generally we would, we don’t provide ongoing care …We’ve got limited resource.
MSP05 (Integrated Community Team Leader)
Another site described criteria as follows:
…one is somebody that’s on the End of Life, maybe the last week of life, few days, and we will go in as a team and do whatever that patient needs to keep them at home… the other one is if somebody’s in their last 12 months of life but has got an acute episode, and that may be uncontrolled pain … most of the time it’s carer fatigue, where the carer just can’t do it anymore
CSP02 (Team leader, HAH)
Overall, we found services reticent to discharge patients “we’d never leave someone in the lurch” was a common refrain. Mostly, it seemed preferable for HAH services to control their caseload by managing access at the point of referral. One site only took CHC referrals, but the conflicts remained:
The difficulty we have with our HAH service and we’ve had twice recently is where people need HAH but they’re not at the stage of their illness where they’re eligible for continuing fast track funding. Then we have a dilemma because the size of our services versus the need, you know, we would be showing inequality if we were taking on people who were not funded through continuing health care in place of people who were. We wouldn’t really be fulfilling our contractual agreement… (however) … we would never leave anybody in a true crisis.
LSP04 (Hospice Director)
It seemed that none of the services had waiting lists as such, but some (re-)prioritised in times of high demand, according to unofficial criteria, for example:
…if it does peak then we’ll look at our bank … see if anybody else can do any extra hours… If it becomes…you know, over a long period of time or a sickness or whatever we’re not able to meet demand then we have to prioritize… although our primary remit is for patients who are in their last days or weeks of life … and you know we can’t see those patients if they have low complexity and low need we go back to the district nurses and say we’re really struggling today. We can’t go.
MSP04 (Head of Service Improvement and Quality)
Managing expectations
Managing patient and family expectations was a process of continuous work over time, involving information provision and negotiation between HAH and those in the home (see also “Support Directed at the Carer” section). Where this worked well, patients and their carers could make informed decisions and choices at each stage of their pathway, even adapting their requirements to the availability of the HAH service.
Qu: did you feel there was quite a lot of expectation from you in terms of care provision for your husband?
A: No. No, I did a lot more than what was expected, you know, because they would always say, ‘oh well we usually do this’ you know, they joked with me because they got to know me, because I liked to do it, you know, that was something I could do for my husband. But no, it wasn’t expected of me to have done any of it.
LC01
Some family carers did not feel prepared for the complexity of need and challenges:
…the process of encouraging people to die at home I’m sure is absolutely fine… But I’m quite sure there are going to be many, many, many cases… where it places an enormous strain on the family …. we had no preparation…
XC01
When expectations were not well managed, disappointment and frustration could result.
I called every day to that last week saying “Any beds, any beds?” and [nurse] saying “Nope, nope, sorry, sorry, sorry” and on Friday she said “we’ll talk on Monday” and I said, “it’s not… he’s not going to last that long” … and I was right, he died on the Sunday morning, on his birthday. And at that point I would’ve thought “is it worth moving him?” because he’s not, you know, he’s so unwell and it’s that mad- “you have to be sick enough to get in, but not so sick that you’re about to die any second” so, it’s like the goldilocks of terminal illness, … that makes me sad
PC12
The need for marketing to increase visibility and referral numbers for sustainability purposes, together with a genuine desire to encourage the identification and referral of the whole range of suitable patients who could benefit from HAH, seemed to conflict with elements of the “hospice ethos” of services: preferring not to discharge patients, not trusting other services to provide adequately, not wanting to abandon patients and families. As a result, caseload management became a significant challenge (overlapping with the “Knowledge, Skills and Ethos” section).