Yvonne Millerick is a Heart Failure Palliative Care Nurse Consultant Senior Lecturer employed by Glasgow Caledonian University with a clinical secondment to Glasgow Royal Infirmary. Yvonne is regarded as a leading expert in heart failure and palliative care and firmly believes that the clinical academic role is crucial for maintaining her professional credibility. In this blog, Yvonne shares over 37 years’ experience of caring for patients with heart failure and her expertise on integrating palliative care into heart failure management.
The whole is greater than the sum of its parts
I would like to begin by saying that a system wide approach that is fully inclusive of patients, carers, professionals, commissioners and policymakers, etc is absolutely essential for a unified heart failure palliative care approach in clinical practice. Otherwise, there will remain significant service inequity resulting in some people receiving excellent care whilst others will not.
Changing perceptions requires this consistent messaging about unmet needs. What palliative care is, what it’s not, and why it’s essential within heart failure. That everybody has to be involved.
“Why is this (palliative care) not happening for me?”
I think if we involve patients and carers, then they become more informed about what they’re expectations should be. And if they realised that there are gaps in what they expect to receive, then they become champions themselves, and they seek ways of identifying how best to act to create change by asking themselves “why is this not happening for me?” They are absolutely vital, they must be involved to inform the decision-making process.
Many patients following a diagnosis of heart failure will say, “it could be worse, I could have cancer”, changing perceptions is crucial and the starting point must be to raise awareness of the people who live with, work in and provide funding for heart failure more knowledgeable about the condition and overall impact. We must also remember that heart failure very rarely comes in isolation. Most patients with heart failure will also have a number of comorbidities that further impacts on their prognosis, day to day living and quality of life. The need for palliative care is even greater without either patients, caregivers, professionals or funding authorities realising it.
If we think about heart failure being the final common pathway for almost all cardiovascular disease, irrespective of age, it is comparable with many types of cancer and yet there remains gross inequity of access to palliative care services. There are a number of reasons for this. General public and professional perceptions of what palliative care is and what it has to offer remains poor with many associating palliative care with the imminence of dying. This presents a real barrier to integrating unified palliative and heart failure care, resulting in gross inequity of access to palliative care services at an earlier stage and throughout the illness trajectory.
Education is key
I think education is key. In terms of undergraduate education, I think that changing perceptions is one thing for the people that we work with on a day-to-day basis that are already providing that care. I actually think for carers, patients, professionals and funding bodies that the education needs to start at the very beginning. If it’s embedded right at the beginning, then I think we’ve got more of a chance of changing things longer term, and being able to provide the equity that is so much needed.
For lots of people, and I would even go so far as to say the majority of people, palliative care is often considered as being synonymous with dying. We absolutely need to get the message out there, whether you’re a patient, a professional, a funding body, or a policymaker that palliative care is so much more than that. We need to be able to raise awareness about what palliative care is and that end-of-life care, although it’s extremely important, is a small part of the palliative care approach. And I don’t think we are anywhere near where we should be with this.
We should attempt to share the message that palliative care is like an extra layer. For example, a cardigan that you wear as and when your needs are greater and remove again when you are feeling better. Adopting a cohesive approach with the wider professional enables each to offer their unique contribution and to develop cross speciality skills and expertise.
The risk of doing nothing
The risk of doing nothing is not an option. Commissioning future services and mapping what best practice care should look like is essential. We need to think about the wider impact on people living with heart failure, heart failure professionals, service implications with many struggling to cope with less resource. Commissioners may not fully understand the overall burden of significant unmet need across the whole system. This burden impacts on patient and caregiver experience, it impacts on service provision and it has a severe financial impact on the NHS budget with substantial costs being driven by hospital utilisation. There is an opportunity to provide a unified heart failure palliative care approach which can improve care experience, appropriate service provision and potential cost savings to the NHS. To do this effectively we must continue to raise awareness of Heart Failure as a life limiting condition that is associated with a poor prognosis. Changing perceptions is key across all health and social care. It is not uncommon for two patients (one with cancer and the other with heart failure) to have similar needs and yet perceptions of what heart failure is compared to cancer is quite different. This often results in persons with cancer being prioritised which only widens the inequity. Resource allocation must be based on need and not diagnosis.