How Marie Curie’s hospice in Edinburgh developed an Enhanced Hospice Care at Home service to support patients with complex and unstable palliative care needs.
A Community nurse specialist team who can visit patients at home once a week or give advice via telephone.
A Hospice at Home team that can visit patients daily (from 0800-2100) to provide support with personal care.
A Hospice at Home overnight service that helps administer medications and supports patients with personal care overnight.
However none of these are appropriate for patients with complex needs who need more specialist clinical support.
Patients with complex needs could be cared for in the hospice’s inpatient unit (IPU), but beds were not always available. It can also be difficult for patients and families living in the West Lothian area to get to the hospice using public transport. This sometimes leads to patients declining a bed, because they felt it was too far away from their loved ones.
This all led to patients with complex needs being admitted to hospital, which was not always necessary (and was not always the patient’s preferred place of care).
The hospice piloted an Enhanced Hospice Care at Home service to provide daily clinical support to people with complex palliative needs. It aimed to:
provide responsive palliative care to complex and unstable patients
support family members and carers
enable patients with complex needs to stay at home, if this was their preferred place of care
reduce unnecessary admissions to hospital for patients nearing the end of their life.
How it works
The Enhanced Hospice Care at Home team operates seven days a week. The team consists of four registered nurses (3.2 FTE) who work shifts covering from 8:30am to 9pm. There is one senior palliative doctor and a Charge Nurse Co-ordinator (both working from 9am to 5pm, Monday to Friday).
Outside of these hours, patients can contact the hospice’s rapid response service or the District Nursing community service for help.
An on-call doctor and Clinical Nurse Specialist (CNS) are available for remote consultations at the weekend, and GPs can provide prescriptions out of hours if needed.
The team cares for patients who:
have complex, uncontrolled or escalating symptoms
require daily review to manage their symptoms
prefer to be cared for at home
would need to be admitted into in-patient care if they could not receive Enhanced Hospice Care at Home (or if they are already in in-patient care, they would not be able to be discharged without Enhanced Hospice Care at Home).
The Enhanced Hospice Care at Home team can visit patients multiple times per day. Patients and carers can also phone a dedicated number at any time, if they are worried about anything or if symptoms change.
The team is able to quickly assess patients’ needs and provide appropriate support. Once patients are stabilised, they are referred on to other services as appropriate. The average patient is with the service for five days, but they can stay on the caseload for as long as necessary. One patient was with the service for a few weeks.
Outcomes
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The hospice carried out a full evaluation of the pilot. This found that the service not only reduced the number of admissions to hospital but also supported patients to be discharged from hospital sooner.
No patients from the Enhanced Hospice Care at Home service were admitted to hospital while on the caseload or following discharge from the service.
Over the full year of the pilot, the service avoided 236 admissions to hospital, saving 1,205 hospital bed days.
Patients and carers have reported that the service had several practical impacts, including:
continuity of care
improved symptom management
rapid access to medication and equipment
support to manage caring responsibilities
consistent signposting and referral to onward care and support
reassurance, comfort and relief.
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“I could never have stayed at home without the efforts that they put in to help keep me here.”
Patient
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“It’s having somebody to say, you know, ‘This is what you can expect,’ or, ‘This is normal, these feelings, these, you know, challenges.’
For me, it’s almost like a security blanket. So I know who to phone, and I know that there are people who can help us.”
Carer
Facilitators, challenges and advice
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Key facilitators
The hospice received Winter Pressures funding, which enabled them to run the pilot.
The hospice recruited new nurses to staff the service. Although they were all experienced community nurses, they did not necessarily have hospice care experience. The hospice adapted the pre-existing training plan for new nurses on the in-patient unit, to suit the needs of the Enhanced Hospice Care at Home team. This involved shadowing staff on the ward to gain knowledge about medication and symptom control.
Training and development are given a high priority in the team. In the community setting, the nurses have regular practice observations and are given real-time feedback and support. They also come together as a team for regular teaching sessions.
Challenges
The hospice’s footprint covers Edinburgh, Mid Lothian and West Lothian. The hospice had originally planned to offer the Enhanced Hospice Care at Home service in Edinburgh city centre, but as the pilot developed they realised there was greater need in West Lothian. This area is further away from the hospice building, with higher poverty. People living in the area are less likely to own a car and it is difficult to reach the hospice using public transport. The hospice was able to adapt the service to reach more people in West Lothian.
All patients and carers on the caseload are given a direct phone number for the service, in case they need extra support. However, people tend to still use the number to ask questions or get support after they have been discharged from the service. Depending on the reason for the call, the Enhanced Hospice Care at Home team might add them to the caseload again, or refer them to another service for more appropriate support.
It took time to embed the service in the local multi-disciplinary team (MDT). This is partly because patients only usually stay with the service for a few days, so the caseload changes rapidly between MDT meetings. The Enhanced Hospice Care at Home team now run a 15 min drop-in meeting with the District Nursing team each morning, which helps identify where patients might MDT support.
Tips and advice
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The optimum caseload is more about logistics than numbers. The pilot service was initially planned for a caseload of three patients, but this soon increased to five. As the pilot continued, the team learned that managing their caseload is more dependent on the logistics of travel than the number of ‘beds’ available. For example, it is relatively easy to support eight people if they all live close together. However if there is a caseload of five people who all live several miles away from each other, it will be more difficult to manage their care.
Build relationships from the start. Work with other community teams and be guided by them about the needs of the local population. Make it clear that you are there to learn from their expertise, not take over.
Look at your local population need before you make decisions about where to deliver a service.
Make it clear to patients and carers what 'discharge' means. Some people worry that when they are discharged from the Enhanced Hospice Care at Home service, they won’t be eligible for any further support. Explain what the next options are and make sure patients are referred on to the appropriate services.
Future development
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The pilot has now finished and the team has received some additional funding from Marie Curie to continue the service in the short term. The hospice is looking at how they can develop a more integrated community team within their existing resources.
The hospice is working to improve data collection for the service and develop a dashboard.
