A dedicated service providing End of Life Care (EoLC) Rapid Transport to ensure patients that are dying as a result of a terminal illness are transferred to their preferred place of death, in a timely and compassionate way.
The service is operated by Welsh Ambulance Services NHS Trust (WAST) by their Non-Emergency Patient Transport Service (NEPTS) throughout Wales. When a terminally ill patient is dying, all services need to work together to ensure that the patient can experience a good death. Anxiously waiting for transport to get a loved one home or into a hospice is not an experience that patients and families should have to endure.
The October 2019 NICE publication ‘End of Life Care for adults: service delivery (NG142) states that the availability of efficient and timely transfer is important to ensure that people can be moved quickly, when needed, to where they would like to be cared for and die (Recommendation 1.11.2). The service operated by WAST demonstrates how to implement this recommendation in frontline service.
Aims and objectives
The Welsh Ambulance NEPTS team have been providing transport to EoLC patients for many years as part of their planned day runs. However, for specialist clinicians such as those working in palliative care, planning these journeys in advance can be very difficult given the unpredictable nature of a patient’s decline as a result of their terminal illness.
If a patient had a rapid decline, knowing which number to phone in WAST was not clear for colleagues outside WAST. Often in the event of a sudden or unexpected deterioration, clinicians wanting to facilitate transport for an EoLC patient to their Preferred Place of Death (PPD) would often resort to 999 in the belief this would be the quickest way to get transport. Unfortunately, as 999 ambulances prioritise work on a clinical need basis, there was often a delay in being able to provide this much needed transport. Calls coming into 999 have to be prioritised to ensure paramedics can attend to the sickest people with potentially reversible causes such as choking, cardiac arrest, a stroke or a heart attack prior to facilitating a transfer of a patient with a terminal illness.
WAST recognised the need to prioritise these essential journeys and create a dedicated booking system that was clear and understandable for healthcare professionals outside the Trust. The booking system needed to capture the required information to ensure a safe transfer was undertaken by the correct resource, with minimal levels of delay.
Reasons for implementing your project
When a patient who has terminal illness is nearing death it is essential that all services work together to ensure that the patient can experience a good death. How a person dies remains in the memories of those who live on, anxiously waiting for transport to get a loved one home or into a hospice is not a memory that any family would want to have.
Prior to the service operating, patient experience was often poor for EoLC journeys, with significant delays reported by patients’ families and healthcare professionals. A study of one hospice for the year prior to the EoLC Rapid Transport Service being introduced showed the average wait for EoLC transport was almost three hours, with a maximum delay of more than 16 hours.
Prior to introducing the EoLC Rapid Transport Service, WAST did not specifically flag EoLC journeys therefore it was difficult to audit. Since the introduction of the service all EoLC journeys are flagged making audit far easier.
From the newly recorded journey data, requests to provide transport to an EoLC patient to their PPD somewhere in Wales are usually around 5 per day, it does not currently exceed more than 10 per day. To give context, the population of Wales is 3.14 million people. Using data from the Office of National Statistics, approximately 90 people die per day in Wales.
How did you implement the project
As the service did not have any additional funding to improve provision or have any dedicated resource available for EoLC journeys, WAST implemented a service that could utilise existing resources across the Trust and with their delivery partners. Creating a virtual pool of NEPTS resources reduced the challenges previously faced when these calls went via 999. Calls to 999 are time sensitive in terms of clinical priority, calls to NEPTS are generally not as time sensitive therefore EoLC journeys can take priority. EoLC calls are mainly facilitated by NEPTS discharge vehicles, predominantly used for conveying patients back to their home or care home following hospital discharge. The effect of prioritising EoLC calls does not have detrimental consequence on patients awaiting a planned run, control staff will place a courtesy call to the unit expecting the discharge vehicle to inform them of any delay due to an EoLC call, the response from other units is always one of understanding and agreeance that an EoLC journey should take priority.
An all-Wales booking number was established and utilised a central booking point for healthcare professionals (HCPs) to contact. To ensure the required information was captured to achieve the best patient experience, WAST developed in partnership with palliative care clinicians an EoLC Rapid Transport Service booking form. The document prompts the team to ask a unique set of questions that differ from a normal NEPTS booking, including:
- Does the patient have a DNACPR in place? (The last thing anybody wants is NEPTS crews, being health care support workers therefore unable to use clinical judgement, being put in the difficult position of needing to consider CPR for a patient that has died as a result of a terminal illness).
- If the patient were to die en route, where should the crew convey them to? (Death in transit is a possibility therefore it is essential this is planned for to avoid putting NEPTS crews in a difficult position of not knowing what the family would want).
- Is a clinician likely to be needed, perhaps for symptom control? If this is the case, then a nurse or doctor is advised that they will need to travel with the patient and NEPTS crew in order to use the service.
WAST also established a NEPTS EoLC transport guidance document to help healthcare professionals understand what the service is, how it works and which number to use to contact the service. The content of the guidance was designed with members of the palliative care community and WAST staff.
Concerns about the potential to be overwhelmed by introducing this priority service within NEPTS, specifically the impact it may have on other work sets and whether WAST could deliver the required level of service, were overcome by implementing a phased roll out. The Welsh NHS consists of 7 Health Board areas, when introducing the new service it was decided to do it one Health Board area at a time and by serving only one site, usually a hospice within that Health Board area at the onset. Evaluation of the service after a period of time would take place before then rolling out to more sites within the same Health Board area. Further evaluation would then take place before rolling out to the next Health Board area and so on until the service was embedded across Wales.
In order to alleviate any concerns NEPTS staff (Health Care Support Workers) may have had in relation to responding to patients who were likely very poorly, WAST and colleagues from Palliative Care Wales put together an eLearning training programme specific to NEPTS staff and EoLC, additionally face to face workshops were also hosted around Wales with particular focus on communication skills in EoLC, supported by the End of Life Care Board in Wales and Macmillan Cymru.
In August 2017, the NEPTS EoLC Rapid Transport Service was introduced and trialled on a small scale in four pilot sites in South Wales. The trial allowed WAST to test the criteria and the booking process to ensure that the right questions were being asked and the correct data was being captured. As there were no additional resources to deliver the service, and the service standards were that every journey needed to be delivered when required, WAST also needed to ensure that the quality and timeliness of service delivery was to the required standard.
Each one of the initial journeys was evaluated for timeliness and to ensure that the relevant HCP’s feedback was gained and any comments built into the operation of the service. Once satisfied that the initial sites were operating as planned, WAST consulted with the palliative care community for the next most appropriate sites and continued the roll-out process across Wales. Evaluations were completed following the addition of each site.
The service is now available across Wales and has carried out over 900 journeys. A recent review of the service revealed the median waiting time for an ambulance booked through the EoLC Rapid Transport Service is 52 minutes, the mean waiting time is 1 hour and 2 minutes.
The study also compared the performance before and after the introduction of the service to the busiest unit, Marie Curie Hospice in Penarth, and found the following:
- Pre-EoLC service average response time = 2h 56m. Post EoLC service average response time = 1h 11m
- Pre-EoLC service longest wait =16h 47. Post EoLC service longest wait =3h 36
Respondents also reported the following comments:
- ‘We get a more timely transfer for our patients. We used to find that patients were bumped down the waiting list for emergency transport, and would wait for many hours’.
- ‘Telephone guidance sheet is very comprehensive and used on a daily basis. This has reduced the number of telephone calls we are required to make and improve the overall speed of admission. The call handlers are always very helpful’.
- ‘Easy to access, much quicker than usual ambulance transport and prevents patients (who are sometimes very unwell) waiting up to 12 hours to be brought in to hospice’.
- ‘Excellent responsive resource. Improves End of Life Care’.
Key learning points
The biggest learning point from the work undertaken has been that there isn’t always the need for additional investment to deliver a new service or improve existing service provision. By pooling all resources and working in a manner that does not adhere to traditional regional or service boundaries WAST have developed a much larger virtual pool of resource that has been able to deliver a more impactful service.
The work has been evaluated using qualitative date from the WAST database and by capturing clinician feedback. Due to the nature of the journeys, it has not been possible to capture patient feedback.
WAST are also expanding the End of Life Care service to support patients and families that have requested a journey to allow them to participate in an activity or experience that the clinician feels will be beneficial to patient/family wellbeing or condition management. This could involve a journey home to spend a precious few hours with family of friends or a journey to a location that has a significant emotional meaning to them.