Interview with Premila Fade, the new BGS End of Life Care Lead
We spoke to Prem Fade who has recently accepted the reins of BGS End of Life Care Lead from Martin Vernon who is now working in his new role with the Department of Health. Prem is a Consultant Geriatrician at Northwick Park Hospital in London; she is a member of the BGS Policy Committee and past Chair of the BGS Medical Ethics and Law Special Interest Group.
What does the role entail?
I don’t claim any special knowledge or expertise but I am passionate about improving end of life care for our patients.
My role as lead is to ensure the voice of the BGS is heard when national strategy and guidelines are being formulated and, to develop links with other strategic organisations involved in end of life care. In particular; to highlight the needs of older people and the contribution that both the BGS as an organisation and its membership make in promoting, developing and providing high quality care for older people nearing the end of life. This is important now more than ever because end of life care is finally getting the prominence it deserves in national policy and commissioning. Specialist palliative care services are branching out into non-cancer diagnoses, however traditional models of palliative care do not meet the needs of our patients and it is imperative that our skills, knowledge and understanding of the complex interplay between aging, frailty, chronic disease and acute illness are utilised when new services are designed and developed. Geriatric medicine is at its heart, a balancing of (patient centred) objectives – prolonging life, reducing disability, improving symptom control, whilst acknowledging that life is finite and may be nearing its end. A significant proportion of our work is palliative but because we don’t always use this terminology our skills and expertise in this area have, in the past, been under- estimated. My goal is to ensure our voice is heard.
What is your background and why did you choose geriatric medicine?
When I started out in my medical career twenty years ago, I thought I wanted to be a neurologist. When I didn’t get the job I wanted, my consultant at the time (a gastroenterologist) suggested that I think about geriatric medicine. I thought at the time that he was trying to let me down gently, telling me I was not good enough to be a neurologist but actually he recognised my strengths better than I did myself.
Set on the path of geriatric medicine, I increasingly saw the ethical nature of the decisions being made and took a brief detour to study an MA in medical ethics and law. I started to question more and more, the goals of medicine and began to understand that being a geriatrician is as much about acknowledging the end of life as it is about prolonging life.
During my first consultant post in Dorset, I worked in collaboration with my palliative medicine colleagues to improve end of life care in the hospital (using the AMBER care bundle and co- writing a personalised care plan for the last days of life to replace the LCP), and the community (we developed a unified DNACPR policy for Dorset, trained nurses to do end of life care plans with PEACE and ran a training programme to accredit nurses to discuss and sign DNACPR forms).
What are the big issues facing Doctors/geriatricians in EOLC?
In the past, geriatricians had to strive to ensure older people had the same access to advanced medical technology as younger patients. However, the tide has now turned and increasingly the focus of our practice is to explain the limitations and adverse consequences of medical interventions to our patients and their families. With an increasingly aged population suffering from multiple chronic diseases, our strengths are our generalist knowledge and skills, and our ability to factor frailty into the complex medical decisions which need to be made.
The development of highly technical medical specialities has led to fragmented medical care to the detriment to our patients. And so the focus of the BGS has changed to highlighting the need for integrated multispecialty multi-professional person-centred care for older people. Our challenge moving forward is to change the way our colleagues in other specialities make treatment decisions with older patients. We need to improve their training and skills so they can recognise frailty and its impact on their treatment decisions, so that we can work better together to achieve better living and dying for our patients.
Why do many people still die in hospital even though they say they want to die at home?
There are several reasons for this: Recognising that a person is in the last phase of life is sometimes difficult, particularly if the person is not suffering from cancer but has a severe chronic disease and/or is frail and very old. The Gold Standards Framework (GSF) prognostic indicators may be helpful here.
The person and their family may have difficulty in accepting that life prolonging medical treatment is not in the person’s best interests. Sometimes there is genuine uncertainty about outcome and conflicting priorities e.g. campaigns to improve early recognition of MI, stroke and sepsis, which are considered to be potentially reversible lead to more frail older people being conveyed to hospital earlier. Poor communication and co-ordination of care, particularly between primary care, secondary care, social care, and out of hours services, is another significant factor. This can potentially be avoided by advance or end of life care planning and care coordination delivered by multidisciplinary community teams in the home or care home. However, alternatives to hospital admission are not usually available 24 hours a day (due to cost and manpower factors) and this limits their impact.
What is replacing the Liverpool care pathway (LCP)?
The Liverpool care pathway was developed to transfer best practice in care of the dying from the hospice to the acute hospital setting but unfortunately, in translation and implementation, it came to be seen by some as a generic protocol and tick box exercise.
In the most damning criticisms, the LCP was cited as a way of withholding food and fluids from patients to starve them to death. The demise of the Protocol in 2013 led to a hiatus which has been partially filled by guidance from The Leadership Alliance for the Care of Dying People LCDP in 2014. Rather than producing another care plan/pathway five priorities of care were established, namely: i) identification that the person may be dying; ii) sensitive communication of this information to the patient and their family; iii) patient and family involvement in decisions about care; iv) addressing the needs of the family/significant others; and v) an individualised care plan which includes food and drink, symptom control, psychological, social and spiritual support, agreed, delivered and reviewed with compassion.
In 2015 The Royal College of Physicians audited end of life care in acute Trusts. The audit had two elements; an organisational review of services and protocols, and a case note review based on the five priorities of care. 142 acute Trusts participated and the results showed 66 to 83 per cent compliance with the five clinical standards, results defined as ‘encouraging’ by the audit lead, Professor Ahmedzai.
How does it feel on the ground?
The demise of the LCP coupled with the Tracey judgement (Article 8 of the Human Rights Act and DNACPR decisions) have left clinicians understandably nervous about making DNACPR decisions and discussing withdrawing life prolonging treatment. This is where we, as geriatricians, need to show leadership in our acute Trusts and ensure discussions and decisions are made by appropriately trained and experienced healthcare professionals with enhanced communication skills. Assessing acutely unwell patients and devising appropriate treatment escalation plans is our bread and butter, working with our palliative care colleagues we can ensure good symptom management and high quality end of life care at home or in hospital.
2. PEACE developed by GSTT
4. ‘One chance to get it right’ leadership Alliance for the Care of Dying People June 2014
5. ‘End of Life Care Audit- dying in hospital: National report for England 2016’ Royal College of Physicians of London March 2016