May 15, 2014

expert reaction to the National Care of the Dying Audit of Hospitals

The National Care of the Dying Audit for Hospitals, led by the Royal College of Physicians found significant variations in care across hospitals in England, calling for major improvements to be made to ensure better care for dying people.

Dr David Brooks, President of The Association for Palliative Medicine (APM), said:

“A core job of any hospital is to care for the dying, yet this Audit shows this care is still not being prioritised. Ten years on from NICE recommending that specialist medical and nursing services should be available seven days a week in palliative care, only a fifth of hospitals are in a position to provide this level of care. In light of the Francis Inquiry and the ‘More Care Less Pathway’ report, we find this very troubling. The Audit also highlights considerable variation in care across the country, suggesting the issue is still not regarded as a priority nationally.

“Adequate basic training is provided for all doctors and nurses for a number of clinical issues like resuscitation and infection control, and we would expect hospitals to have specialists available when needed for urgent support in stroke management and heart disease, for example. Yet, although we all face dying at some point, there isn’t adequate training and access to specialist support in the majority of hospitals to ensure all dying patients receive the care they deserve whenever they need it.

“It should be a basic entitlement for a dying person to have high quality, compassionate end of life care. This requires those caring for them to have adequate basic training and access to specialist support when needed, irrespective of where they are in the country.”

Dr Katherine Sleeman, Clinical Lecturer in palliative medicine, Cicely Saunders Institute, Kings College London, said:

“If we want to provide good quality care for the dying, we need good quality evidence from research to guide that care.

“We welcome the report on The National care of the Dying Audit, which aimed to assess the quality of end of life care provided in hospitals across England using a combination of clinical case note reviews, questionnaires to bereaved relatives and carers, and a review of organisational structures. The Audit reveals unacceptable variation in the provision and organisation of care for people who are dying. Unequal access to palliative care must be addressed. We welcome the Audit’s recommendations that all hospitals should provide mandatory education and training in care of the dying, and specialist palliative care services seven days per week. This needs to be resourced adequately.”

More information provided by Dr Katherine Sleeman, Dr Jonathan Koffman (Senior Lecturer in palliative care) & Dr Fliss Murtagh (Clinical Senior Lecturer in palliative medicine), at the Cicely Saunders Institute:

“The Audit has given us information about processes of care (whether conversations happened, whether pain relief was given), but gives us only limited information about the difference care makes as perceived by the patients themselves (were they satisfied with the information given, was pain relief adequate). Our research project OACC (http://www.csi.kcl.ac.uk/oacc.html) aims to address this by collecting information on the impact of care, as reported by patients and families themselves (Dr Fliss Murtagh).”

“In addition, the results of the national Audit are likely to reflect not just a problem with the quality of care provided, but a problem with the quality of evidence recorded by health care professionals in hospital notes. Poor communication is a well recognised concern in care of the dying, and is a focus of the national Audit.

“Knowing patients’ values, wishes and preferences is central to practicing good end of life care. We know from recent evidence that doctors and nurses are often unaware of patients’ preferences, and patients’ chances of dying at their preferred location improve substantially if their doctors and nurses are aware of their preferences. Developing tools to improve communication with patients and their families should be a focus of research. For example, we have recently developed a tool called PACE (Psychosocial Assessment and Communication Evaluation) to improve communication on Intensive Care Units.⁽¹⁾ Further evaluation is necessary to determine if this tool can improve communication in other settings (Dr Jonathan Koffman).”

“If we want to provide good quality care for the dying, we need good quality evidence from research to guide that care. In the UK, the amount of medical research funding spent on palliative and end of life care is tiny – in cancer around 0.2% of research funding (or 20p in every £100) is allocated to end of life care.⁽²⁾ Strong evidence to guide care of the dying is a necessity, not a luxury (Dr Katherine Sleeman).”

(1) Higginson IJ, Koffman J, Hopkins P, Prentice W, Burman R, Leonard S, et al. Development and evaluation of the feasibility and effects on staff, patients, and families of a new tool, the Psychosocial Assessment and Communication Evaluation (PACE), to improve communication and palliative care in intensive care and during clinical uncertainty. BMC Med. 2013;11:213.

(2) Sleeman KE, Gomes B, Higginson IJ. Research into end-of-life cancer care–investment is needed. Lancet. 2012;379(9815):519.

‘The National Care of the Dying Audit of Hospitals’ is published by the Royal College of Physicians on Thursday 15 May 2014.

Declared interests

David Brooks is on the Steering group that produced the National Care of the Dying Audit, and is a member of the Clinical Advisory Group to the Leadership Alliance on Care of Dying People (which is developing the national response to the More Care Less Pathway report). He is also an NHS consultant in Palliative Medicine.