National survey results and identification of service models

National survey

The aims of the survey of HAH services were to identify the range and variation in HAH delivery models across England and to categorise the services into models according to key features and settings. The survey findings enabled the identification of services representing each model.

Of the 128 services invited, 113 (88%) were charity-led services and 15 (12%) were NHS-led services. Survey data were collected from 70 HAH services (55% response rate) over a 5-month period (February 2017 to July 2017). Twenty-two services opted out of taking part in the survey and a further 36 services could not be contacted after three attempts. There were no significant differences between responders and non-responders based on urban/rural settings.

Characteristics of hospice at home services

Responding HAH services reported varied numbers of referrals per annum [mean 452 (SD 393.7) referrals, minimum 62, maximum 2222]. Some services covered very large areas (across counties). They served total populations ranging from 5000 to 1.2 million (mean 323,488). On average, 2.5 referrals were received per 1000 of the total population (SD 2.5 referrals) annually.

Key characteristics of responding HAH services are shown in Table 2. Two-thirds of services relied on charitable funds or donations as their main sources of income, one-quarter of services were funded mainly by the NHS and three were fully funded by the NHS or their local authority. Many HAH services (n = 44, 62.9%) received NHS funding as a secondary source, but nine services (12.9%) received no NHS funding at all. When asked if having inadequate funding made it difficult to provide HAH services, 59 (84.3%) indicated that it made service provision somewhat or substantially difficult, whereas nine (12.9%) felt that inadequate funding did not affect service provision.

Services operated predominantly in mixed urban and rural settings and across areas with mixed deprivation levels; few services were operating in predominantly deprived areas. When asked whether or not the geography of the area made it difficult to provide services, most responders (97%) thought that this factor made service provision challenging. Most, but not all, services operated alongside 24-hour district nursing NHS services; just over one-quarter were operating alongside other HAH services in the same area.

Services had highly variable referral criteria with respect to the life expectancy of patients accepted for HAH care. Very few services provided care solely for the actively dying, defined as having hours or days to live; more than half of services accepted patients with a prognosis of up to or > 1 year. When asked if the referrals made to the service were manageable and appropriate, 97% of service managers responded that the referrals received were somewhat or substantially manageable and appropriate for their service.

Most HAH services reported providing personal, hands-on care for patients (such as washing and personal care), symptom assessment and management, psychosocial support and respite care for carers. Approximately half of HAH services were able to provide care 24/7. Fewer services provided practical support (household tasks, e.g. shopping) directly for family members or carers. Most HAH services were able to provide rapid response times (including at weekends) within 4 hours.

On average, services cared for patients for between 1 week and 2 months once referred. Service managers reported that intensity of care data were not routinely collected and were difficult to provide. Nearly half (n = 32), however, stated that they provided intensive care to patients (> 3 hours per day). Almost all services had local access to inpatient palliative care beds, if required, in a hospice, a hospital or a care home setting.

When asked about factors that made it difficult to provide HAH services, two main factors emerged. Delay in being able to administer anticipatory medicines by injection in a timely fashion was cited by 43 (61.4%) HAH services as somewhat or substantially difficult, and an inability to access necessary equipment and anticipatory medicines was problematic for 39 (55.7%). Almost all service managers felt that HAH services received substantial non-monetary support from local commissioners, the hospices themselves, community nurses and GPs (98.1%, 98.6%, 100.0% and 100.0%, respectively).

Staffing

On average, HAH services employed 19 members of staff, but the range was large (see Table 2). More than half (n = 37, 52.6%) of the services had at least three or more different disciplines among their staff. Nearly all services employed RNs and/or HCAs to provide day-to-day care (n = 66, 98.6%). Most services used more HCAs than RNs. Four HAH services were staffed with RNs only, and four with HCAs only. Many services (n = 45, 66.2%) did not employ additional staff solely dedicated to HAH services, instead drawing on clinicians and HCPs working across hospices and/or NHS services. Just over half of the HAH services reported no difficulty recruiting and retaining staff. Detailed staffing data proved difficult to collect and analyse, as many HAH services could not provide accurate data at the time of the survey. Therefore, findings on type of staff employed by HAH services and full-time equivalents should be interpreted with caution.

Views on enablers of hospice at home services

Parts of this section have been reproduced from Butler et al.15 © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted. This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: https://creativecommons.org/licenses/by/4.0/. The text below includes minor additions and formatting changes to the original text.

The survey asked service managers about elements that supported provision or made it difficult to provide HAH services in their areas (Figure 4). Field notes recorded during survey interviews provided further insight into key contributing features for successful services. First, planning and integration of services locally was a major factor contributing to the provision of HAH services. Having a detailed business plan for commissioning and integration with other local end-of-life services enabled HAH service provision and funding. Furthermore, direct access to NHS trust services or other suppliers of medication and equipment, as well as suitably trained and prepared people to undertake medication administration, were key factors to patient care remaining within the home. The presence of an integrated patient record also allowed better integration and facilitated arrangement of anticipatory prescribing and advance care planning across providers.

FIGURE 4 Enablers of and barriers to HAH services. (Figure not reproduced here; see the original article.)

Workforce, staff skills and wider support also emerged as key to supporting HAH services that allowed patients to die at home. Service managers expressed the need to have a service able to respond to changes in demand, as patients could deteriorate at any time in the last hours/days/weeks of life, and their resulting service needs fluctuated accordingly. Using a skilled workforce mix of permanent and flexible staff (under zero-hour contracts) enabled services to adapt to demand. Many service managers also reported that identifying patients requiring rapid response or intensive support using trained triage staff and being able to communicate the support available to patients and families were key features of success. HAH services also benefited from a well-trained and extensive network of third-sector support, volunteers and a responsive family support system.15

Service models: typology

The goals of the survey were to understand the current national landscape of HAH provision and to identify ‘model types’ of HAH services for further investigation. A typology of services was explored from national survey responses, but the heterogeneity meant that it was difficult to see clear groupings. Hence, a pragmatic approach was taken. The size of a service had been stipulated in the protocol as an important criterion for differentiating services. Following discussion among the full team and with the steering group, whether or not a service provided care 24/7 was selected as a second distinguishing feature. This resulted in four model types (quadrants): large and small services with and without provision of 24/7 care (see Figure 3).

The size of a service was defined in terms of number of referrals, with large services being those reporting > 365 referrals per year (i.e. more than one per day), and small services being those with fewer referrals than this.

Whether or not a service provided care 24/7 was defined according to whether or not a service met two or more of the following conditions (based on the service’s response to the national survey):

• hands-on care provided 24/7
• symptom assessment and management provided 24/7
• able to respond within 4 hours.

Recruitment of hospice at home services

Eight HAH services were originally included in phase 2 of the project. All eight were inducted into the study between November 2017 and February 2018. One service dropped out as a research site owing to workforce changes, having recruited three patient–carer dyads. As recruitment for the study fell behind the projected target, a further five HAH services were recruited to the study between October 2018 and February 2019. Two HAH sites were closed to the study in January 2019, having met recruitment targets, and the remaining nine continued to recruit until close of study recruitment on 30 June 2019. Although no patient–carer dyads were recruited to the study after 30 June 2019, data collection continued until 30 October 2019. In all, data were analysed for 12 HAH services, four in quadrant 1 (Q1) (larger, 24/7 services), four in Q2 (smaller, 24/7 services), one in Q3 (larger, not 24/7 services), three in Q4 (smaller, not 24/7 services).

The characteristics of the HAH services according to eligibility criteria for service models are shown in Appendix 8. The 24/7 availability of NHS district nursing services is also shown.

Among the five HAH services not meeting the criteria for providing 24/7 care (i.e. models in Q3 and Q4), one HAH service reported 24/7 symptom assessment and management and another reported ability to respond within 4 hours; two reported that DNs were available in the area 24/7.

Summary

The survey provided, to our knowledge, the first detailed description of the range of HAH service provision existing in England. Services reported widely varying levels of activity, staffing configurations and referral criteria. The term ‘hospice at home’ does not have consistent meaning. Although almost all of the HAH services provided personal care, psychosocial support and symptom management, not all provided this 24/7. Most services were providing care for, on average, 1 week to 2 months from referral, and most had staffing with a greater proportion of HCAs than of RNs. Two-thirds of services reported charity donations as the main source of funds. The main difficulties faced by HAH services were geography of their area, difficulty getting other services to provide care in a timely fashion and difficulties accessing equipment and medications (both drugs and administration) in the home. A typology of services was explored from national survey responses, but the heterogeneity within the sample meant that it was difficult to see clear groupings. Hence, a pragmatic approach was taken, grouping services depending on their size and on whether or not they provided 24/7 support.