Clinicians Involved – Aimee Williams (Heart Failure Specialist Nurse), Dr Ellis (Consultant Cardiologist), Dr Back (Palliative Care Consultant), Dr Bayliss (Palliative Care Speciality Doctor)
“Cardiologists (even those with an interest in heart failure) can often struggle to recognise and adequately manage the palliative needs of their advanced heart failure patient. We are easily blinkered to focus on interventions that, particularly with significant comorbidities, have little if any minor prognostic benefits but can worsen quality of life. End of life experiences for patients with advanced heart failure are all too often characterised by recurrent and unnecessary hospital admissions driven in some cases by cardiac interventions. Working together with palliative care colleagues for carefully identified patients with advanced heart failure moves the focus of care towards improved symptom management and has been a rewarding experience that enhances patient care”Dr Ellis, Consultant Cardiologist
Our Adopt and Spread experience begins with our Heart Failure Service. This service aims to provide comprehensive and flexible evidence based care to patient with heart failure due to reduced ejection fraction. We seek to improve patients’ health related quality of life, chiefly by improving symptom control and reducing hospital admission, and to reduce mortality by supporting the implementation of disease modifying evidence based therapies. Our service also aims to improve end of life experience for both patient and carers. We were concerned that our patients may be disadvantaged in terms of their access to palliative care. The unpredictable disease trajectory, difficult prognostication and complex care needs can often present barriers to accessing palliative care services. We recognised that we needed a consistent approach to supporting patients’ needs as they live and die with Advanced Heart Failure.
The innovation of a valued based approach for managing patients with Advanced Heart Failure provided an exciting opportunity for us to learn from the Cardiff & Vale UHB and Velindre NHS Trust Bevan Exemplar innovation project. This innovation appeared to provide a sustainable, high quality, comprehensive service to patients with Advanced Heart Failure. We were thrilled to have the Bevan Commission provide us with the opportunity and resource to adopt and spread this model of care.
Where our project started
Our project was due to start April 2020. Due to the COVID many routine services halted, staff were redeployed and crisis interventions became priority. As we started to recover from the first wave, return to our normal roles and redesign our services we were keen to renew our efforts to implement our Bevan project. We began our project with an enthusiastic consultant cardiologist, an intrigued palliative care consultant and a passionate heart failure nurse in late September 2020. Our Advanced Heart Failure Supportive Care Service set out to provide high quality care to patients with advanced Heart Failure due to HF-REF.
Our goals are:
- Implement a pathway which will allow patients with advanced heart failure due to HF-REF (Heart failure with reduced ejection fraction) who deteriorate to access supportive care in the community.
- Holistically assess patients establishing need for information, symptom control, psychosocial support and spiritual support. Implement effective individualised care to maintain quality of life for as long as possible.
- Improve communication with patients and carers, aiming to improve understanding
- Clarify and set treatment goals and facilitate pre-emptive discussion in the outpatient setting of treatments that would and would not be beneficial, considering supportive care needs.
- Actively create opportunity to discuss and implement advanced care planning at patients own pace
- Respect patient choices and facilitate end of life care in their preferred place of death
- Facilitate the use of subcutaneous furosemide infusions in the community as a means of palliating episodes of fluid overload.
- Reduce avoidable emergency admission due to heart failure
- Reduce emergency contacts with health professionals
- Reduce inequality in the access to supportive services for Heart Failure patients due to HF-REF
- Reduce inappropriate variations in care using evidence based practices consistently and transparently.
- Improve co-ordination and communication of patient care across care settings.
As with all services, the ongoing COVID-19 pandemic continued to present challenges. It complicated the risk vs benefit of face to face interactions. Where appropriate, we adapted by utilising virtual contact methods including Attend Anywhere and telephone consultation. We ensured our clinics took place in quiet, spacious, clean environment with minimal foot traffic. COVID-19 risk assessment were carried out prior to contacts.
We have also experienced a changeover of staff midway through our project following the retirement of our Palliative Care Consultant (Dr Back). Thanks to an extremely supportive palliative care team our project continued uninterrupted. Dr Bayliss (Palliative Care Speciality Doctor) stepped in to support our clinics and Dr Jones (Palliative Care Consultant) stepped in to support our MDT’s.
We also needed to ensure that primary care services remained engaged with us as they were unfamiliar with our new model of care. Despite our best efforts we found that patients were more likely to be admitted when seeking advice from out of hour’s services highlighting need for ongoing work in this area.
We found patient reported outcome measures difficult to gather as patients often did not like completing these independently which we encouraged to avoid practitioner influence over their answers. This also felt poorly timed in patients who were deteriorating, leading to practitioner reluctance to complete this exercise.
Where we are now
We are midway through our project, our data is therefore incomplete but is extremely promising.
- 100% of patients offered opportunity to engage with Advanced Care planning.
- 95% of patients have identified home as their preferred place of care
- 5% did not have a preference but were more concerned regarding the effect on family
- 90% have identified home as their preferred place of death
- 10% did not wish to discuss end of life care
- 95% of patients have a community DNACPR in place
- 3 cases of high carer strain identified that had previously gone unnoticed. This allowed additional support to be offered. One case required onwards referral to other services.
- Patient reported outcome measures data collection is ongoing. Current data shows symptom burden remains high with 35% of our cohort are deteriorating. Breathlessness, fatigue and poor mobility are the most prevalent symptoms our PROMS do not sensitively assess the effect of coping strategies.
- Interim data suggests we are on a trajectory to significantly reduce bed days. This is important as a large proportion of patients identified home as preferred place of care.
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- Whilst we complete our year project we will continue to gather valuable information and feedback which will hopefully allow us to implement a permanent high quality value based service for patients living and dying with Advanced Heart Failure.
- Continue to enhance communication between healthcare sectors and services ensuring continuity of care plans and reducing inappropriate variations in care.
“The transition from care led by Cardiologists and Heart Failure Specialist Nurses to Palliative care can be challenging for patients. This transition can be achieved more effectively with the joint support of both HF and palliative clinicians and ultimately helps to empower the patients and their families to understand and manage their condition. “Dr Ellis, Consultant Cardiologist
“Having regular contact and care from my nurse has been the best access to healthcare professionals over the past 18 months. My nurse has made sure my care has been optimised and met my needs. If the team had not been available I would have struggled and felt like more of a burden”Patient
“Everything about my experience has been first class. I couldn’t change a thing”Patient
“Without support I don’t think I would be as well as I am”Patient
Our Bevan Experience
We have had a fantastic opportunity to implement innovative care improving patient experience. It has been a great opportunity to connect with and learn from other passionate, driven healthcare professionals creating a network of communication across Wales through which we can share knowledge and experience.
A big thank you to Clea Atkinson & Sian Jones of Cardiff & Vale University Health board for providing support and expertise which have been integral to our project.
Thank you to all the Palliative Care team at Y Bwthyn for supporting our venture to improve the experience of patients living with Advanced Heart Failure (Special thanks to Dr Back, Dr T Hamilton, Dr Back, Dr Bayliss & Dr Jones)
Thank you to the Heart Failure Team at Royal Glamorgan Hospital for getting the ball rolling on this important project and for your ongoing support (Dr Ellis, Mandie Welch).