Outcomes for patients on the Adastra electronic register
Fewer hospital deaths in North Somerset and Somerset.
Fewer hospital admissions in the last month of life in Somerset.
Stimulated conversations across professional boundaries. What helps the register work
Dedicated ‘drivers’ with small patches (e.g. Somerset EOL facilitators).
Previous benefit from register.
Identifying a lead GP within the practice with responsibility for end of life care and specifically the end of life care register.
Clearly nominating one named person within a GP practice and/ or district nurse team to be responsible for handling the
administrative aspects of the register.
“Cold calling” to obtain patient consent.
Putting the electronic register on laptops for staff to use at their convenience.
What stops the register from working
Some staff do not see the relevance.
Major difficulties in obtaining passwords and gaining access, especially in North Somerset.
Perceptions that the register consigns patients to no further care and therefore is not in the patient’s best interest.
Reluctance of professionals to have advance wishes conversation to gain consent.
Difficulties in knowing when to time advance wishes conversation to gain consent.
Host of technical problems e.g. crashing, moving between screens, extracting data, .
Lack of clarity about who is responsible for registering, maintaining and deleting records. Everyone is responsible so no one is responsible.
Paramedics unable to access (North Somerset) or receive information too late (Somerset) to influence decision making.
Change fatigue and implementation issues.
What helps the recording of Key Worker
Helping staff to see that they are already performing as ‘Key Workers’.
Assuaging fears that the Key Worker role will entail more work.
What stops the recording of Key Worker
Staff reluctance to be recorded as Key Worker because of confusion about the role, a belief that the informal systems work well and/ or a perception of ‘tick boxing’.
136 9.1 Introduction
The Adastra End of Life care electronic register is region-wide in the South West and so not exclusive to the Delivering Choice programme. The aim of the electronic register is to record patient advance care wishes so that professionals across organisational boundaries (for example hospital, community, primary care sectors and hospices) can update and access information when in contact with end of life care patients. All patients who might die within the next 12 months are eligible for registration, regardless of condition.
This section covers two interventions: the electronic end of life care register and the recording of Key Worker, which is a field in the register record. Before beginning, however, a note on terminology, as the Adastra end of life care register is known colloquially as ‘Adastra’, for the company that developed and launched this product, but we have referred to it interchangeably as ‘Adastra’ and ‘the electronic register’. The costs of the electronic register for a minimum three year contract were an initial £10k for the set up fee with an ongoing cost of 2p per head of population per annum (Phase I report). As part of its QIPP strategy, the Strategic Health Authority expected that use of the electronic register would account for a savings of 10%, although no further information was available about where these expected savings would be made (Executive Board minutes 15.6.10).
To learn more about the register and Key Worker, we obtained the views of 85 professionals, 71 in interviews and 14 in surveys, including community nurses, specialist palliative care nurses, hospice nurses, GP surgery staff, Delivering Choice service providers and hospital staff. We also read documentation such as the Marie Curie Phase I, II and III reports, Board meeting minutes and papers.
9.2 How are the register and Key Worker supposed to work? 9.2.1 Register
We did not find explicit objectives and outcomes for the register in any
documentation. Key fields in the electronic end of life register include Key Worker, preferred place of death, advance care wishes, ‘do not resuscitate’ (DNR) status and anticipatory prescribing (‘just in case’ boxes). The assumption appears to be that access to this information increases the likelihood of meeting patient wishes and improves coordination of care across discipline and organisational boundaries. The intention was to shift end of life care from reactive to more proactive responses from professionals, with earlier identification of appropriate patients.
The electronic register was intended to be especially helpful to Out of Hours and emergency staff, who often have no way of accessing the records of daytime doctors and nurses. So, for example, if paramedics attend an end of life care patient, they could access details on the patient held on the electronic register to find out if the patient has a ‘do not resuscitate’ order in place.
137
The two Care Coordination Centres in Somerset and North Somerset held responsibility for “establishing, maintaining and reviewing the end of life care
register, including information on preferred place of care and death” (Phase I report), although, as this account suggests, discharging this responsibility can sometimes be taxing.
This part time GP sent through what we call the additions form, but the patient hadn’t given consent, she hadn’t ticked the consent box, and we’re not
supposed to put it on without the patient knowing. So I phoned [the GP], she was part time, she wasn’t in surgery until the next week. So I said, ‘Well can you ask one of the other GPs?’ Oh, they didn’t know anything about it. Then the patient went into Bridgwater Community Hospital, so I thought okay, they still use the urgent out of [hours] care services. ‘Could a doctor please have this conversation?’ Well I asked the nurses. They said, ‘Oh we don’t do advance care planning’. So I said, ‘Well could one of the doctors?’ ‘Oh well there won’t be one in now until Monday; they’ll only be called in if it’s
emergencies’. I thought, we’re not getting anywhere here. So I phoned on the Monday, oh yes the doctor would do it that day [and then] didn’t. So another week went by. So this patient still wasn’t on the register. Then I phoned, I think I might have been out of the office a couple of days. I thought oh still not on the register, this would be sod’s law wouldn’t it that this patient gets called 999, gets resuscitated. And the GP had gone on holiday, and it was just a series of errors. There wasn’t a Key Worker identified, nobody wanted to take responsibility. Then the patient was discharged home and eventually, I can’t remember, it went on for what seemed like weeks, I got the doctor saying, ‘Oh yes the patient would give consent’. And so I put the patient on the register.
(SCCC, GN) 9.2.2 Key Worker
The electronic register includes a ‘Key Worker’ and ‘associate Key Worker’ field, ideally one of whom is a community nurse. The purpose of the Key Worker is to “navigate and co-ordinate care” for families and patients across organisational boundaries (Phase I report). Ideal Key Worker characteristics are that the Key
Worker is someone that the patient and family members trust, the Key Worker knows about services available and the Key Worker is a member of the multi-disciplinary team (Executive and Stakeholder Board report May 2011). Ideally, the Key Worker should be assigned when the patient is placed on the electronic end of life care register or at a Gold Standards Framework or multi-disciplinary team meeting (Executive and Stakeholder Board report May 2011). Initially, the Key Worker field just contained a professional discipline (for example district nurse) but the name of the Key Worker with contact details are now recorded in both counties. The roles and responsibilities of the Key Worker were identified as:
Register the patient on end of life register (as per the first step of the Delivering Choice pathway – see Chapter 10).
138
Act as a main contact for patient/carer.
Carry out basic recognition of patients needs to be assessed.
Identify associate Key Worker to act as a deputy in their absence.
Coordination of assessments, referrals, information, equipment, medication and care package, support to Out of Hours.
Provide advice information and guidance to the patient and their family member and to other professionals regarding the patient.
Ensure that the family member / significant others needs have been assessed and met.
Ongoing monitoring to ensure the patients’ needs are being met effectively.
Ensure necessary risk assessments are completed in a timely fashion.
Bereavement follow up. (Executive and Stakeholder Board report May 2011) 9.2.3 Gaining access and consent
Professionals from a variety of backgrounds including district nurses, paramedics and hospice workers received training in using the electronic end of life care register. To access the system, professionals need to apply for and obtain a valid, current password. The system was intended to be available in hospices, GP practices and community team bases, A&E departments, ambulance services and some hospital wards.
To be registered on Adastra, a professional and the patient have a conversation about end of life care wishes and the patient gives consent to be registered. This discussion is often initiated by a community or hospice nurse or sometimes a GP. Previously, patients could be put on the register without giving their consent but now, when registering, the rest of the record will not advance without completing the consent box.
9.2.4 Roll out and costs
To roll the register out in North Somerset, the End of Life Care facilitators offered training to different professional groups and worked directly with GP practices on request. In Somerset, Marie Curie Cancer Care funded nine End of Life Care facilitators, one for each federation to improve uptake of the register amongst community staff and GP practices from the summer of 2011. In addition, the Somerset Quality Improvement Facilitator worked with Somerset health professionals to help implement the register.
9.3 How does the register actually work?
9.3.1 What prompts professionals to use the register?
To be clear, ‘use’ of the register consists of two possible actions: (1) entering or updating information on to the electronic register including initial registration or (2) viewing the record to inform decision making. Participants reported that they entered data:
139
To ensure that the wider health and social care community was kept up to date with decisions, care plans and latest treatments, usually soon after recent contact with the patient, carer or when in contact with another service on behalf of the patient (two community hospice nurses).
Participants recounted that they viewed data on the electronic register for decision making when:
They came across a patient unfamiliar to them and they wanted to be fully informed before progressing with the case. (Discharge in reach nurse).
They wanted to know the patient’s advance care wishes (various professionals).
To check to what extent GP surgeries were using the register (community palliative care nurse).
To prepare for multi-disciplinary meetings (community hospice nurse).
To support discharge planning (hospital palliative care nurse).
For example, one community palliative care nurse, who could not actually access the register herself, was keen to ensuring that other professionals knew patient wishes.
I find if I’ve got a patient who I know is really poorly and I know doesn’t want to be resuscitated I can’t wait to get them on there just to get that information out there.
(Community palliative care nurse RT)
9.3.2 What influences patients to give consent?
The main role patients have is in giving consent to go on the register. We did not talk to patients about registration but a community palliative nurse who ‘cold called’ patients to ask if they wanted to go on the register recounted that she had experienced a range of responses from “almost hostile” to welcoming.
People who were very receptive to the idea and could understand the merits of it, and perhaps they didn’t want to have unnecessary admissions, they wanted to avoid that, and they were very up for people such as a the ambulance service understanding what their diagnosis was. They could see the merits of that and they would very much wish to be included. (Community palliative care nurse RT) This same nurse went on to say that she carried out the registration process in the patients’ presence with their input.
Because she [a patient] knows it’s a database and she wants to know what’s going out there and I thought that was great because you can help me do it. If there’s something else that I hadn’t thought of that you want to put in the message bit. (Community palliative care nurse RT)
140 9.3.3 Uptake and reach
Our figures suggest that annually about 2000 patients in North Somerset and 5000 in Somerset are suitable for palliative care. For North Somerset, data from the Adasta electronic register were extracted on 13 April 2012 in Excel format, which was easy to use and manipulate. For Somerset, data from the electronic register were
extracted on 19 April 2012 in PDF format and were much more difficult to manipulate. The table below gives information on levels of recording.
Table 46: Proportion of patients on electronic register in North Somerset and Somerset
North
Somerset Somerset
Total on register 169 1054
Total with Key Worker recorded 59 (35%)* 454 (43%)^
Total patients in study 1022 2572
Registered 93 (9%)∞ 331 (13%)#
Key Worker recorded 38 (4%)∞ 156 (6%)#
Preferred place of care 81 (8%)∞ 290 (11%)# * = denominator of 169
^ = denominator of 1054 ∞ = denominator of 1022
#
=denominator of 2572
This table shows that for North Somerset, 169 patients in total were registered on the end of life care register, of whom 59 (35%) had Key Worker recorded. In looking at the study period 1 September 2011 – 29 February 2012, in North Somerset 93/1022 (9%) were registered and died during that time period, of whom 38 (4%) had Key Worker information and 81 (8%) had information about preferred place of care. In Somerset, 1054 patients were registered, of whom 454 (43%) had Key Worker information. During the study period 1 September 2011 – 29 February 2012, of the 2572 Somerset patients eligible that died, 331 (13%) had records on the register, of which 156 (6%) had information about Key Worker and 290 (11%) had information about preferred place of care. Thus, overall about 1 in 10 eligible patients in both counties are recorded on the Adastra electronic end of life care register. Preferred place of care is more likely to be recorded than Key Worker.
9.3.4 Delivering Choice service providers
Some Delivering Choice service providers were positive about the register,
commenting on its great potential to link up professionals both within organisations and across organisational boundaries. Others were less enthusiastic. For example, one Delivering Choice service provider commented that registration on the register is a first step on the Delivering Choice pathway, yet that rarely happened. In interviews with and observations of Delivering Choice services, we found that all but one DCP
141
service provider mentioned that they regularly used the electronic register; the exception had yet to receive a password. However, we did not actually observe anyone using the system.
However, quantitative data suggests the register is not as widely used by Delivering Choice Service providers as anticipated. Data from the study period for 1 September 2011 to 29 February 2012 shows that of the 1022 patients eligible for palliative care in North Somerset that died during these six months, 3.3% (1.7%+1.6%) of NSCCC patients were registered on the electronic register of whom 1.7% also had a Key Worker recorded.
In analysing data just for the 153 NSCCC patients who died during the study period, 33 (21.5%) were registered on the electronic register of whom 17 (11%) had a Key Worker. Perhaps this is unsurprising, as the previous lead for the NSCCC had some hesitation about consent and so did not systematically register patients. As of July 2012, we have been assured that the NSCCC now routinely asks referrers if patients are on the register.
Figure 4: North Somerset Care Co-ordination Centre and register usage
For the Somerset Care Co-ordination Centre, data from the study period for 1 September 2011 to 29 February 2012 shows that of the 2572 patients eligible for palliative care that died in Somerset during these six months, 5.8% (2.3% + 3.5%) of SCCC patients were registered on the electronic register of whom 3.5% had a Key Worker recorded. In analysing data for the 294 patients who received SCCC
services and died during the study period, 149 (50.6%) were recorded on Adastra of whom 89 (30.2%) had a Key Worker.
142
Figure 5: Somerset Care Co-ordination Centre and register usage
For the Discharge in reach nursing service, data from the study period for 1 September 2011 to 29 February 2012 shows that of the 2572 patients eligible for palliative care that died in Somerset during these six months, 2.2% (1.2% + 1%) were registered on the electronic register of whom 1% also had a Key Worker recorded. In analysing data for the 144 patients who used the Discharge in reach service and died during the study period, 57 (39.4%) were recorded on Adastra of whom 27 (18%) had a Key Worker recorded.
143
For the Out of Hours advice line, data from the study period for 1 September 2011 to 29 February 2012 shows that of the 2572 patients eligible for palliative care that died in Somerset during these six months, 4.6% (2.3% + 2.3%) were registered on the electronic register of whom 2.3% also had a Key Worker recorded. In analysing data of the 243 patients who received input from the Out of Hours line who died during the study period, 118 (48.6%) were registered on the electronic register of whom 58 (23.8%) had a Key Worker.
Figure 7: Out of Hours advice line and register usage
Thus, in looking at those who died in the six month study period eligible for palliative care in the two counties, of the total population (1022 for North Somerset and 2572 for Somerset), the proportion of patients who were registered ranged from 2.2% (Discharge in reach nurses) to 5.8% (SCCC). In looking just at the patients who died and used the services, the proportion who were registered ranged from 21.5% (NSCCC) to 50.6% (SCCC). The recording of Key Workers amongst those who died and used the services ranged from 11% (NSCCC) to 30.2% (SCCC). So the
Somerset Care Co-ordination Centre was the most likely to have patients registered with Key Workers recorded, although almost half of the Out of Hours advice line patients were also registered. The North Somerset Care Co-ordination Centre was least likely to have registered patients. Given the remit of the Care Co-ordination Centres to maintain the register, NSCCC may need to focus more attention in this area. OOH Adastra Keyworker 125 (4.9%) 60 (2.3%) 58 (2.3%) 98 (3.8%) 115 (4.5%) Total (n=2572) Out of hours line Adastra keyworker
144
9.3.5 Specialist community palliative care and hospice nurses
In moving further afield from Delivering Choice services to the hospice sector, the electronic register reportedly was systematically and frequently updated in North Somerset. We heard accounts from hospice workers in both North Somerset hospices that frontline clinical hospice staff used it daily, as did senior clinical staff. For example, one hospice nurse that worked across the two counties said he inputted new records, updated details for patients regularly and checked the electronic register for all patients on the caseload once a month in preparation for