Best practice in palliative and end of life care for cancer
This resource is for healthcare professionals involved in palliative and end of life care. It highlights best practice when caring for patients in the last years of life.
This resource is for healthcare professionals involved in any aspect of cancer care in the last years of life. However, it is not limited to clinicians. The sections will direct you to information, contacts and ideas that you can explore and share. We intend for this resource to be useful if not comprehensive in educating, advising and highlighting best practice in palliative and end of life care in the UK.
There is good evidence that a growing cohort of patients, with a range of different cancers, will live on average between 1 and 5 years. This is increasing all the time with an ageing population, increasing co-morbidities and more successful cancer treatments.
We know it is difficult to identify when someone enters the last year of life, so this section is designed to promote aspects of care for you to think about. This can include having conversations about the future and using practical resources to help you plan ahead.
We have also considered the potential of increased use of research to predict outcomes and encourage entry into clinical trials and other studies. You can find outputs of research that may help to predict outcomes in this cohort of people living with cancer below.
Macmillan strongly advocates for further research in this area to support best practice based on evidence. Find out more about our research.
Advance Care Planning
1-5 year prognosis
Macmillan’s Learning and Communications Hub offers a wide range of free learning and development courses about personalised care and support planning for Macmillan Professionals and the wider workforce. These include:
- Understanding personalised care
- ‘What matters to me’
- Personalised care planning for people living with cancer
- Care planning in palliative and end of life care
- Cancer Care Reviews
- Prehabilitation, rehabilitation and personalised care for people living with cancer (PRosPer)
- Webinars and communities of practice.
You can find out more about our learning and development offer, download our latest prospectus and sign up to the Learning and Communications Hub on our website.
There are still many patients (20-30%) who present and are first diagnosed as an emergency. These people, and those with advanced and rapidly progressive cancers (some lung cancers and pancreatic cancer, for example) have a poor prognosis. While the same principles apply to planning ahead and having conversations with these patients, there is more urgency in this cohort.
In this section, we highlight groups and charities looking at innovation in this area. We have also highlighted some of the structures in place in primary and secondary care to identify this group of patients. This will enable them to access support such as financial or social care, make plans for end of their life and avoid unnecessary hospital contacts where possible and practical.
- PowerPoint - Acute cancer and end of life (summary slides)
- Report - Impact of Emergency Admissions on Cancer Patients in Northern Ireland
- Report - Urgent Care and Cancer, the Macmillan Merseyside Insight Report
- pdf - Acute Admissions Statement (English)
- pdf - Acute Admissions Statement (Welsh)
- Acute Oncology (Essential Level)
- Nutrition (Advanced Level)
Acute oncology courses (coming soon):
Both of these courses can be found on the Macmillan Learning Hub.
- NIHR - Research for Patient Benefit
- GMC - Treatment and care towards the end of life (ethical guidance summary)
- Marie Curie - Research Grants Scheme
- Sue Ryder - Our research
- James Lind Alliance (nihr.ac.uk) - Palliative and end of life care
Best practice examples
Midhurst Specialist Palliative Care Service
Lack of specialist palliative care provision outside of hospice or hospital setting led high rates of people not dying in their preferred place of care.
What they did
In 2011 Macmillan invested in a 24/7 consultant led palliative care service at in Midhurst along six key principles:
- Early/timely referral.
- Delivery of interventions at or nearer to home.
- Close and proactive collaboration with primary care and other service providers.
- Flexible teamwork between specialists.
- Generalists and trained volunteers.
- Rapid/planned response and crisis avoidance.
For patients seen by the service 50% more died in their preferred place of care and the economic evaluation estimated an average reduction of 20% in health care costs in the last year of life for people referred to the service. A similar effect was seen in five further pilots of specialist palliative care at home that were based on this model.
Advanced Nursing Practitioner in nursing homes evaluation
Like many towns, Barnsley had seen a large increase number of elderly people living with cancer or with palliative care needs. This coincided with a decline in the number of nursing homes, beds and appropriately skilled staff and led to a reliance on residential care homes. The required skills needed to support palliative care for cancer patients were not present and led to higher rates of OOH (out of hours) care usage and transfer to the acute trust.
What they did
An Advanced Specialist Practitioner (ASP) (with expertise in community and hospital based palliative care) was employed to support advanced care planning and EOL care in six nursing homes across Barnsley. The ASP undertook an audit of OOH calls, gold standard framework and focused on engaging and educating care homes and their staff whilst working with GP practices in Barnsley. They were also present at multi-disciplinary team meetings in NH and in community teams.
The resident-level EPaCCS (electronic palliative care record) data shows that where the ASP has seen and been involved directly with residents, they are almost three times as likely to have emergency health care plans or treatment escalation plans and almost twice as likely to have a preferred place of death recorded. There was a reduction in OOH calls and hospital visits in all NH involved in the pilot.
North Manchester Macmillan Palliative Care Specialist Service (NNMPCSS)
In 2016, Manchester Health and Care Commissioning (MHCC) group identified unwarranted variation in provision of choice for preferred place of death in the area, with deaths in hospital more than 10% higher than the national average.
Data published by Public Health England (2016) identified Manchester with 55.9% hospital deaths in comparison with the national average of 45.6%. This disparity was in line with there being no hospice services available in North Manchester.
What they did
The palliative care clinical nurse advisor for MHCC led with commissioners on the development, commissioning and implementation of a consultant-led, community-based palliative care service in North Manchester.
The principles of the redesign were based on the Midhurst Macmillan Community Specialist Palliative Care Service (Kings Fund, 2013) which provides acute-level care at home to patients nearing the end of their lives and wraps services around the patient. Important features are personal case management to co-ordinate all aspects of care, a 7-day service and cross-skilled staff.
The NMMPCSS programme included:
- New pathways of care, embedding clinical triage into daily practice.
- Established daily hub meetings with community teams to ensure collaboration.
- Established a volunteer model, enhancing the 24-hour helpline.
- Revised pharmacy service level contracts and support offers.
- Maintained open referral, including self-referral for adults 18 years and over.
- Established new clinics including for lymphoedema, complementary therapy, speech and language, occupational therapy as well as a ‘social forum’ for peer support and a bereavement group.
- Developed network links with local social services.
- Rolled out effective end of life clinical supervision and support for staff.
- Introduced an Assistant Practitioner role within the NMMPCSS team.
Improved identification of patients and enhanced access to supportive and palliative care has been observed.
All patients now have access to services within 24-hours of referral:
- Fewer crisis admissions have been noted with the number of people dying in hospital being reduced from over 20% to 13%.
- A consultant-led review of all patients on the NMMPCSS caseload who have been admitted to hospital has also improved practice by sharing the learning across the team.
- Integrated working with District Nurses has also led to improved discharge pathways for those admitted to hospital.
- The team have successfully managed to support 82% of patients to die in their recorded preferred place, compared with only 59% the year before the pilot.
- The pilot has also resulted in 83% of the NNMPCSS patients having Advance Care Plans in place and this continues to increase.
Evidence and contacts
This section is a practical guide on how to gather expertise, coordinate care and manage medication in the last days of life. Examples include case studies around single points of access and how and where to access medication. We know this needs to be 24/7 and we now have multiple examples of how this could work and be funded by our social finance initiative. We would encourage expressions of interest.
We are also working with Boots, who have ensured all their pharmacies stock end of life care injectable medication as one practical example of how innovation can be embedded into standard practice.
Boots Palliative Care Service
Boots has partnered with Macmillan to launch a Palliative Care Service in its pharmacies.
The service launches as new research shows one in four people with advanced or terminal cancer are finding it harder to access healthcare.
Boots has worked with the NHS to create a list of the most vital palliative and end-of-life medicines and is committing to maintaining stock of them at over 2,000 pharmacies.
All Boots Macmillan Information Pharmacists have been given additional training on how to support those in palliative and end-of-life care and their family members.
Macmillan’s Enhanced Palliative and End of Life Care Learning and Development Toolkit includes a range of resources on medications in palliative and end of life care, including:
- The WHO analgesic ladder
- Opioid analgesics
- Opioid conversions and opioid switching
- Opioid side effects and opioid toxicity
- Specific considerations when choosing strong opioids
- Adjuvant analgesics
- Syringe pumps in palliative and end of life care
- Anticipatory prescribing.
To access Macmillan’s Enhanced Palliative and End of Life Care Learning and Development Toolkit for free, sign up or log in to the Learning Hub today and join the ‘Enhanced Palliative and End of Life Care Learning and Development Toolkit’ Community.
Macmillan Cancer Support
To learn out about effective communication in palliative and end of life care, and to access free communication skills training, visit the Enhanced Palliative and End of Life Care Learning and Development Toolkit on the Learning and Communications Hub.
You can also access these courses:
- Introduction to loss, grief and bereavement
- Supporting children and young people in loss, grief and bereavement (coming soon)
- Bereavement topic in the Enhanced Palliative and End of Life Care Learning and Development Toolkit.
You can also download our 10 top tips for bereavement support.
National Bereavement Alliance
The National Bereavement Alliance has support for carers facing and following a bereavement:
Hospice UK has information and support for staff responsible for care after death:
The Royal College of Pathologists
The Royal College of Pathologists has a good practice series of focused summary documents:
Best practice examples
Macmillan Rural Palliative Care Pharmacist Practitioner Project
Access to medications for palliation of symptoms led to poor experience of EOLC in rural locations in Scotland.
What they did
In 2012, Macmillan Cancer Support agreed to fund a 2-year project to pilot a full-time Macmillan Rural Palliative Care Pharmacist Practitioner (MRPP) for the area, and test the ability of the post to:
Develop community pharmacy capacity to effectively, efficiently and safely support the cancer and palliative care needs of those in the regardless of care setting.
Improve service provision/co-ordination of services, ensuring opportunities are developed for training and peer support.
Provide quality information to support practice.
Community pharmacists were shown to be effective at improving coordination of OOH care and access to medications. This model also demonstrated the role of AHP role in planning and delivering specialist clinical services while maintaining a generalist role.
Kent and Medway OOH EOLC Pandemic Pilot
In March 2022, in response to the unfolding pandemic, a Kent and Medway End of Life Collaborative Forum was set up to engage a variety of providers and clinicians including Acute Hospitals, GPs, Hospices, Community Hospitals, SECAmb, Commissioners and Regional teams to plan for how to ensure delivery of end of life care in the community during the first wave of the COVID-19 pandemic.
What they did
The team undertook an OOH Pilot in partnership with the local OOH providers IC24, Community Trust, K&M CCG. A senior GP with P&EOC/Frailty experience worked 8pm to 8am alongside the IC24 OOH teams remotely responding to all P&EoLC patients, care homes patients and all frail patients in the community who could need P&EoLC. This included supporting the District Nurses, Paramedics and all others OOH services who may need P&EoLC support. We also communicated by handing over all key issues to relevant services such as GP surgeries, hospices, frailty home visiting teams and hospitals.
An average of 1.6 to 1.8 admissions avoided per night (36% cases). With each avoided admission likely to save approx. £5,600.
36% calls were resolved with no further input required.
2% calls resulted in hospital admission
The pilot moved to phase 3 in august 2020 to ensure sustainable clinician rotas and financial support which was to deliver this service as part of business as usual for 111 CAS, IC24 education and training of current clinicians.
Policy Research Programme Policy Research Unit - Palliative and End of Life Care
Cambridge use of 111 for 24-hour palliative care support.
What they did
The team used 111 as the number for patients to ring for advice 24 hours a day seven days a week for the Cambridgeshire-wide catchment.
Unclear as yet as to impact but a national number is easily remembered, and we will update with data when available – this is the right model to use and should be available nationally if possible.
Macmillan is committed to finding new and innovative ways to improve the lives of the people we support. As part of this, we are testing at scale a new way of funding end of life care services through social investment and building on previous proof of concept work that was done as part of the End of Life Care Integrator.
Social investment is the use of repayable finance to help an organisation achieve a social purpose. Macmillan plans to invest over four years through social investment to fund and deliver up to £36million of new end of life care services across the UK. This is different to how we usually invest in services, where we provide grants to partner organisations without expecting money to come back to us.
The outcomes we want to see as a result of our social investments are:
- People are identified early as approaching end of life and have access to high-quality end of life care services.
- People receive quality care that takes into account their choices, wishes and preferences.
- People have equal access to services and have equal outcomes.
- People approaching end of life and their carers are given personalised support and guidance.
We are working with an expert organisation Social Finance to do this. Social Finance is a not-for-profit organisation that partners with governments, service providers, the voluntary sector, and the financial community to find better ways of tackling social problems in the UK and globally.
Watch the video below to find out more about our Macmillan's social investment work.
Best practice examples
Case study: London Ambulance Service
We have supported a specific London ambulance end of life paramedic and specific service. We have shown a reduction in transfers at the end of life to hospital where not indicated, along with extra ongoing training and support for staff. We have an outline guide as to how this could be achieved in other trusts.
To find out more, download our programme summary.
You can find more information about cancer research in end of life care below:
We offer a range of palliative and end of life care training for healthcare professionals on our Learning Hub, including:
Search for ‘Palliative and end of life care community of practice’ on the Learning Hub to sign-up for an upcoming event. Log in or sign up to the Learning Hub.
Enhanced palliative and end of life care development toolkit
Macmillan's Enhanced Palliative and End of Life Care Development Toolkit offers a wide range of interactive, online modules, tools and resources to develop your knowledge and skills in palliative and end of life care. It is designed to offer flexible, self-paced learning that can be accessed when and where you need it.
We have divided the content into 5 topic areas:
- Pain management in palliative and end of life care
- Other common palliative and end of life symptoms
- Communication in palliative and end of life care
- Palliative care emergencies
- End of life care and bereavement.
Who is the toolkit for?
The toolkit is aimed at health and social care professionals who regularly assess, manage and influence decision-making for people with life-limiting illness.
What level is the toolkit?
The toolkit is Enhanced Level. This means that it is suitable for learners with existing knowledge and/or experience in palliative and end of life care who wish to develop their knowledge and skills.
Palliative and end of life care expert webinar series. Topics include:
- How to involve people with learning disabilities in end of life care planning
- The assessment and management of malignant bowel obstruction
- Delirium in palliative and end of life care
- Why visibility of LGBTQ+ people matters in palliative and end of life care.
For your patients
Our specialist advisers can give advice and support to your patients. Encourage them to call us on 0808 808 00 00 (7 days a week, 8am-8pm).
It’s quick and easy to order free booklets to give to your patients, their families and carers. Topics include cancer types, treatment, and emotional support.