Supporting individuals with dementia: Agnes Houston
By Agnes Houston,
Better understanding of how to deliver excellence in palliative and end-of-life care is the focus of a programme of Churchill Fellowships. This initiative is in response to the challenges of delivering high-quality end-of-life and palliative care posed by increasing demand, limited resources, greater complexity and persisting controversies.
"It is essential that all healthcare professionals are confident in their understanding of how to care for a dying patient and their family." - Professor Charles Hinds, Advisory Council member
Given the choice, I suspect we would all choose to die suddenly and unexpectedly, or experience a peaceful death in our own homes; but peaceful natural deaths at home and sudden immediate deaths for the previously well are uncommon these days. Chronic diseases such as obesity and diabetes, as well as cancer, have come to predominate, and deaths associated with the extreme frailty of old age and dementia are increasingly common. Life expectancy has, until recently, steadily increased (although there are significant discrepancies across socio-economic groups and nations) and the population has expanded. Consequently, the imperative to provide universal high-quality end-of-life and palliative care is increasingly challenging.
Palliative care aims to prevent and relieve suffering and improve the quality of life for patients approaching the end of their life, and to support the family. The early identification, accurate assessment and prompt treatment of pain and other difficulties, whether physical, psychological, social or spiritual, is essential; in addition, such early intervention reduces unnecessary hospital admissions and utilisation of healthcare resources. Skilled communication is important and should include a sensitive exploration of the patient’s understanding of their disease and prognosis. Any outstanding questions must be addressed, and their wishes and plans must be understood, so that they can be helped to make the most of the time left. Usually, close family members will be involved in such conversations.
Currently by far the majority die away from home: around 45% of adults die in hospital, 20% in care homes, as few as 5% in specialist hospices and only 25% in their own home. Palliative care is required in all these diverse settings and involves a range of services delivered by a multi-disciplinary team of professionals, including physicians, nurses, support workers, paramedics, pharmacists, physiotherapists and volunteers. Conventional methods of symptom control should be complemented by alternative approaches such as counselling, pastoral support and complementary therapies (for example acupuncture, mindfulness training, breath control and relaxation). Just as importantly, attention must be paid to practical issues (eg financial concerns) and bereavement counselling. Although specialist knowledge and skills are often required to deliver effective end-of-life care, this is not always appropriate or possible. It is essential, therefore, that all healthcare professionals are confident in their understanding of how to care for a dying patient and their family.
As an intensive care doctor for more than 40 years, delivering palliative and end-of-life care was an almost daily activity for me. In the early years, specialised palliative care was more or less confined to a few hospices and most medical practitioners had to learn ‘on the job’. I quickly learnt the importance of ensuring a ‘good death’, not only for the patient but also for their family and friends. Doing so could be as rewarding for me and the whole team as saving the life of a critically ill patient. Given that mortality rates could be as high as 25% (and were even higher during the Covid-19 pandemic), valuing the provision of excellent end-of-life care made an important contribution to maintaining our morale. Indeed, these days it is widely accepted that delivering high quality end-of-life care improves mental health and job satisfaction for all care givers.
In the intensive care environment, palliative and end-of-life care frequently involves difficult discussions about limiting life-sustaining treatment and, of course, careful consideration of the differing cultures, beliefs and understanding of patients and their families. Tough decisions may include not to admit a patient to a critical care area but rather to deliver palliative care on the ward, or to discharge a patient from intensive care for end-of-life care on the ward or even on occasions at home. End-of-life care for the critically ill thus has more in common with palliative care in other environments than at first meets the eye; increasingly, specialist palliative care teams provide valuable expert advice and treatment, as well as sensitive and effective communication with patients and their families, in this setting. Many of these matters have been highlighted by the Covid-19 pandemic, which also revealed that, particularly when the system is stretched, non-specialist nurses and other healthcare staff may be required to respond to the needs of those who are dying and their families, sometimes in challenging conditions.
As a result of the pioneering work of Dame Cicely Saunders and others, palliative care has over the course of my career developed into a well-established specialty. Indeed, in 2015 the Economist Intelligence Unit ranked the UK the best of 80 countries for end of life care. Earlier this year, the Health and Care Act was amended in the House of Lords to require every part of England to provide specialist palliative care. Nevertheless, serious shortcomings remain in the current provision, which can be patchy, despite a flourishing charitable and private sector. The importance of advanced care planning is well recognised but sadly this is often absent, and there are too often deficiencies in communication and the provision of dignity for those dying in hospital. Accessing palliative care in care homes and individuals’ own homes can also be difficult. As always, a lack of resources is partly to blame (there is only one consultant for every 100,000 of the population and one for every 1,000 deaths, and just 5,000 palliative care nurses) but failure to prioritise and implement recommendations undoubtedly contributes. Moreover, despite the certainty of death in its various forms and many years of discussion, important controversies remain to be resolved, not least in relation to those with less common terminal or disabling conditions, which can be particularly challenging when a child is affected.
It is therefore timely that this year we will open for Fellowship applications that focus on improving palliative and end of life care, particularly for those with less common conditions. We are interested in proposals from health professionals and those in related sectors, such as social workers, counsellors, community carers and volunteers, as well as communities. We also welcome applications that relate to relevant developments in medicine and other disciplines, address relevant legal and ethical issues, or consider the integration of this field into other areas of care.
Our Palliative and end of life care Fellowship programme reopened for applications on 12 September 2023.
Professor Charles Hinds is a member of our Advisory Council and was previously Director of the Intensive Care Unit at Barts Hospital, London, and is a past President of the Intensive Care Society. His research focuses on the genomics of sepsis (and recently COVID-19), establishing and leading the UK Critical Care Genomics Group. Charles is an Honorary Lifetime Member of the European Society of Intensive Care Medicine and the UK Intensive Care Society and was recently awarded the Gold Medal of the Faculty of Intensive Care Medicine.
The views and opinions expressed by any Fellow are those of the Fellow and not of the Churchill Fellowship or its partners, which have no responsibility or liability for any part of them.
By Agnes Houston,