Clinical Team: Dr Annette Edwards (Palliative Care Consultant), Alison Turner (Heart Failure CNS), Louise Harries (Heart Failure CNS), Jenny Mathieson (Specialist Palliative OT), Dr Nikolaos Anatakiolis (Cardiology Consultant), Suzanne Williams (Heart Failure Secretary), Amy Beeton, Simon Mansfield, Dr Meinir Jones, Dr Ceri Smith from the Value Based Healthcare Team
Our team is based in Withybush Hospital, Pembrokeshire. Our health board, Hywel Dda, serves a wide geographical area, however we decided to start in Pembrokeshire so the project would be more manageable initially.
Our clinical team consists of a Palliative Care Consultant, Cardiology Consultant, two Heart Failure Clinical Nurse Specialists (CNS) and a Palliative Occupational Therapist (OT). There is administrative support from the Value Based Healthcare Team.
Why is this project important?
We know that heart failure is a common condition, and patients often have a poor quality of life and a high symptom burden; often equivalent to patients with metastatic cancer. Despite this, these patients are referred less frequently to palliative care services than other life-limiting conditions such as cancer.
In Pembrokeshire in 2019, only 6 patients with heart failure were under the care of the community palliative care team; this counted as only 9.1% of patients with non-cancer and just 1.8% of total referrals to the team. The expanding non-cancer remit of palliative care in the United Kingdom has provided an ideal opportunity to explore ways to address the holistic needs of this vulnerable group of patients.
In Pembrokeshire, there was little co-speciality working between heart failure and palliative care services prior to this. Patients with heart failure who were under the care of the Heart Failure Nurses were discharged once stable, and so this project provided an opportunity to improve continuity and improve the patients’ journeys.
Where our project started
Our original plans consisted of monthly multidisciplinary team meetings (MDT’s) with all of the clinical team present. Additionally, we had planned fortnightly joint clinics in which the Palliative Care Consultant, a Heart Failure CNS and Palliative OT would be present. These clinics were due to be held in a range of locations throughout Pembrokeshire, including NHS outpatient clinics and two hospice charity venues.
Due to the Covid-19 pandemic, our project was put on hold until July 2020. When it restarted, the monthly MDT’s were held virtually via Teams. The clinics occurred on an ad-hoc basis and were a mixture of joint clinics and individual clinics with Palliative Care Consultant or Heart Failure CNS. There were also a number of domiciliary visits to patients. The Palliative OT who had originally joined the team was no longer able to participate, but in January 2021 another Palliative OT joined and agreed to receive referrals from the team.
The project goals were to:
- Improve communication with patients and carers
- Improve understanding and acceptance of prognosis;
- Palliate of high symptom burden;
- Identify unmet needs and support through Palliative Care assessment, including Occupational Therapy;
- Discuss and implement patients’ advance care planning at the patient’s own pace;
- Respect patient choice, to facilitate the end of life care in their preferred place of death, and;
- Explore ways of palliating episodes of fluid overload in patients’ homes, including the option of the use of subcutaneous furosemide, thus avoiding repeated hospital admissions and maximising time in preferred place of care and consequently achieving a preferred place of death.
We collected patient-reported outcome measures (PREMs) and patient-reported outcome measures (PROMs) as below:
Patient-Reported Outcome Measures (IPOS) (.docx)Download
Caregiver-Reported Outcome Measure (Zarit-Burden Interview) (.docx)Download
Clinician-Reported Outcome Measure – Australian-modified Karnofsky Performance Scale (AKPS) (.docx)Download
Patient-Reported Experience Measures (PREM) (.docx)Download
- Improved patient experience
We recorded 7 PREM’s; 100% of patients agreed or strongly agreed that they felt listened to at appointments, and 86% of patients agreed or strongly agreed that their coordination of care had improved, which was reflected by staff comments.
Most also felt their symptoms had improved, and 85% agreed or strongly agreed that they would recommend the service to others.
2. Improved Communication with Carers
The results highlighted that in this patient cohort, 72% of carers felt they didn’t often have time for themselves, and 22% felt almost always stressed.
80% felt that the service had been beneficial for them, and a further 80% agreed or strongly agreed that the clinic has been beneficial for their friend/relative.
3. High symptom burden
The PROMs highlighted that patients particularly reported suffering from shortness of breath and weakness or lack of energy. There was a wide range of symptoms reported, including drowsiness, agitation, constipation and mental health issues such as anxiety and depression.
The patient cohort also suffer with limited mobility, which is also noted from clinician reported measures where 95% of patients are dependant or need help with support to climb stairs and 60% being dependent on support to get dressed.
4. Implement Advance Care Planning
Advance Care Planning and DNACPR was discussed and put in place for a number of patients, as per the graphs below.
9 patients were referred to Paul Sartori hospice-at-home service, where were able to access Advance Care Planning, as well as day respite, standby support and equipment.
5. Clinical interventions
The clinical team had contact with patients in a variety of settings, including outpatient clinic, telephone, patients’ homes, hospital and via discussion with other colleagues.
A wide range of interventions were undertaken, with the majority being medication related, of which around a third were opioids (for a mixture of breathlessness and pain), as well as benzodiazpeines, laxatives, antiemetics and others.
There were high numbers of patient contacts for both the Palliative Care team (302) and Heart Failure CNS clinicians (164), reflecting the high symptom burden and care needs for these patients.
13 patients were referred to the Palliative OT, and she performed a variety of interventions, including referral for equipment, breathlessness techniques and support managing fatigue. Feedback was excellent, and we were told that patients’ carers particularly valued the one-to-one contact and length of time spent with their family, and strongly wished that the service continues.
6. Facilitate End of Life Care
Of a small patient sample, the majority of patients stated they wished to die at home, with only one patient each preferring to die in hospital or having no preference. Of those who died during the project, 5 died at home, 1 in a care home and and 3 at hospital. It should be noted that one of the hospital deaths was a sudden, unpredictable death and the patient who died in the care home was comfortable with that outcome.
- COVID-19 – The nature of the project changed due to Covid-19; rearranging clinics created significantly extra workload for the clinicians involved, particularly rescheduling and coordinating appointments, with the added uncertainty of staff redeployment. The pandemic also lead to Joint MDT’s taking place virtually, which was was a novel way of working. Virtual MDT’s were reported by staff to have worked well and lead to some time efficiencies in terms of not having to travel to a physical meeting, and this is a positive effect of COVID changes to working practice that we may aim to continue.
- Rurality – due to Covid-19 and having to cancel clinics, many patients were seen in their home. Pembrokeshire has a wide geographical area, taking over an hour to drive from either side of the county. This was unfortunately not a very time-efficient way of seeing patients, and lead to a large amount of travelling time by the clinicians which we had not predicted.
- Capturing data – the logisitics of collecting data proved more challenging than initially expected. This was partly due to the data being collected in paper format, which required staff to print the data collection forms to give to patients, and upload them onto the Shared Drive once completed. This took more time than using technology such as iPads would have, which is something we may consider in the future. In hindsight, greater clarity regarding roles such as secretarial and admin support would have been useful, as well as a clearer strategy for capturing outcome measures when the project restarted in the summer. Another factor was that a high proportion of patients became too unwell or died before collection of the outcome data. This however, was perhaps unavoidable, and reflects the unpredictable nature of heart failure.
Reviewing all of the patient from this project, it is evident that these patients have a high degree of morbidity, with a wide range of physical symptoms, particularly shortness of breath, weakness and poor mobility. They also experience a high frequency of mental health issues compared to the general population, demonstrating the need for a holistic service if we are to truly improve these patients wellbeing. Furthermore, their carers have reported high levels of stress and worryingly, almost half feel that their health has suffered as a result of caring for their relative or friend.
We have also shown the high degree of involvement these patients need from a wide range of services, and the frequent contacts needed from the team. These contacts often require specialist input which would need a specialist heart failure or palliative care professional to do.
Given the proven successes of the project, we feel it merits continuation, with monthly MDT’s to be included in clinicians’ job roles. This will give us an opportunity to collect more data to hopefully show improving patient outcomes and reduction in hospital admissions. We also feel the risks of discontinuing this service are great; poorer patient and carer physical and mental outcomes, as well as a potential increase in hospital admissions, complaints and related costs to the health board.
To continue to service and its proven benefits, we are going to ask for a further year’s funding from our health board to continue the service, in the form of monthly MDT’s and clinical reviews. We are hoping to employ a dedicated Advanced Heart Failure/Palliative Care Specialist Nurse for 2 days a week to lead the project, as well as continued input from the other clinicians currently involved in the project.
Very many thanks to all of the team members involved, all of who have dedicated a huge amount of time and energy to supporting the project. Also, a very big thank you to Dr Clea Atkinson, Sian Hughes and all at the Bevan Commission for giving us this fantastic opportunity, and putting their faith in us.
Finally, we would like to give thanks to all of the patients and carers who have been involved in this service, who graciously completed the (numerous!) outcome forms, and given us valuable feedback at every stage of the project.