The patient population
Palliative medicine seeks to improve the quality of life and ultimately, the quality of dying among patients facing a life-threatening, progressive illness. More broadly, there is potential involvement for palliative care services for people whose end of life is anticipated in line with the course of their illness.
In the UK, the projected number of deaths will increase over the next 25 years from 2.9 million (2014–2019) to 3.4 million (2034–2039). There were 468,875 deaths in England in 2014 according to the Office of National Statistics death registrations data published in 2016. According to the 2014 ONS population projection for England, this is projected to rise to 561,000 deaths by 2035/36, an increase of 19.6%.
The estimated need for palliative care services can be derived from the numbers of deaths and patterns of prevalence of palliative care concerns (epidemiological approaches), or from current provision and recommendations (comparative and normative approaches). The Palliative Care Funding Review (opens PDF, 4MB) in 2011 suggested that between 69% and 82% of people who die are likely to have needed palliative care. The more complex cases will require specialist input led by a palliative care physician. A study on estimating numbers of people needing palliative care was undertaken in 2014.
Progress is being made regarding place of death and fewer than half of us now die in hospital – in 2014/15 this figure was 46%. However, the CQC State of Care report and Public Health England’s National End of Life Care Intelligence Network show that there is still more to be done to improve end-of-life care in 40% of acute trusts.
The above estimates assume that there should be equity of access on the basis of need, not diagnosis. While cancer accounted for nearly 166,135 deaths in England and Wales in 2016, palliative care is of demonstrable benefit to patients with end stage renal and cardiac failure, COPD and some neurodegenerative disorders, which together account for around 90,000 deaths. In addition, there are increasing numbers of people with dementia. Yet, depending on service setting, between 63% and 85% referrals to palliative care were for people with a cancer diagnosis.
Equity of access to palliative care also needs to be addressed for people in deprived communities who report a poorer quality of end-of-life care. This includes people who are vulnerable, homeless, in prison, and from some black and minority ethnic communities. Health and Wellbeing Boards should lead the development of population-based needs assessments for end-of-life care services. Commissioners and providers should influence the organisation of services so that they can demonstrate increasingly equitable outcomes. Access to quality care should not be affected by age and diagnosis, but based on needs and preferences.
Prevention of disease
Palliative care input can improve both quality and efficiency of care, not only through management of current physical and psychological distress, but though a proactive approach working with patients, carers and other professionals to anticipate and consider possible options and choices in the context of changing and worsening health status. Improving the quality of end-of-life care in all settings will in turn contribute to supporting people in the community and reducing avoidable (especially crisis) admissions, and ultimately fewer deaths in hospitals. The resource, Ambitions for Palliative and End of Life Care: A national framework for local action 2015–2020, published by the National Palliative and End of Life Care Partnership gives more information.
Advance Care Planning (ACP) is recognised as a cornerstone to good end-of-life care according to the National Council for Palliative Care and NHS guidance (opens PDF, 591KB). Community services are developing to support quicker and more effective discharge from hospitals and reducing unplanned crisis admissions, with a better-trained workforce, and delivering dignity in care. One such example is the ‘Midhurst Model’ developed with Macmillan Cancer Support.
ACP is appropriate when an individual may be entering the last year of life, but a similar proactive approach is of value when palliative care physicians and teams receive referrals earlier in the pathway, for example someone living with cancer as a chronic condition; in such situations this can enable a less distressing transition from active treatment when the time comes. Palliative care nurse specialists and physicians are increasingly involved in the acute care pathway along with acute care and oncology teams, where they can assist with triage and rapid discharge if indicated using their links with hospice and community teams.
The use of shared electronic information such as summary care records (SCR) and Electronic Palliative Care Coordination Systems (EPaCCS) support coordination of care across different settings.
Finally, palliative care input to support carers and families before a death, and for some in bereavement, can help with difficulties in acceptance and adjustment. This is particularly important for individuals who are at high risk of complex grieving and suicide, and for children and young people.
Planning effective services
The following are the current recommendations for specialised level palliative care which describe the minimum workforce to support working week services.
Per population of 250,000, the minimum requirements are:
- consultants in palliative medicine – 2 whole-time equivalent (WTE)
- additional supporting doctors (eg trainee/specialty doctor) – 2 WTE
- community specialist palliative care nurses – 5 WTE
- inpatient specialist palliative care beds – 20–25 beds with 1 nurse: 2 bed ratio.
Per 250-bed hospital, the minimum requirements are:
- consultant/associate specialist in palliative medicine – 1 WTE
- hospital specialist palliative care nurse – 1 WTE.
These recommendations are from the last decade and were largely based on cancer requirements. The rapidly ageing population and increasing focus on non-cancer and multiple comorbidities means that more specialist palliative care provision will be needed. The Association for Palliative Medicine has recommended that population-based requirements should be increased to 2.5 WTE consultants per population of 250,000. In addition, the following should be noted:
- Hospitals with cancer centres and tertiary referrals for other conditions will require more than the above minimum requirements
- Following the NICE Improving supportive and palliative care for adults with cancer guidance from 2004, services in both acute trusts and community should provide at least 9–5 direct clinical assessment and 24/7 access to palliative care advice. RCP audit data published in 2014 showed that only 20% of hospital teams provided direct clinical services at weekends
- Each specialist level palliative care team will require input from a multi-professional team including occupational therapists, physiotherapists, social workers, chaplaincy and administration
- These figures do not take into account the education and training responsibilities, nor any subspecialisation role required locally.
New guidance for commissioning of palliative care services was published in 2016 and we are awaiting revised NICE guidance. Currently many services are not able to meet the aspirations for 7-day, specialised level palliative care for a variety of reasons.
The medical workforce in the UK is below the staffing requirements to support current demands Monday–Friday. There is a predominantly female workforce (76% of consultants in 2017) with many choosing to train less than full time and also to work flexibly during the first years as a consultant (53% of consultants). For the past three decades there has been ongoing consultant expansion but this is slowing down, as have training numbers.