Many people are unable to access all the support they need at the end of their life.
The quality of care can be variable depending on location, social and cultural background, and diagnosis.
This report highlights progress made by the health and care system in implementing NICE guidance on end of life care.
Published September 2020
Why focus on end of life care for adults?
Around half a million people die in England each year. With an ageing population, the annual number of deaths is estimated to increase. The COVID-19 pandemic has also led to an increase in the excess death rate.
People are approaching the end of life when they are likely to die within a year. This includes people whose death is imminent and people with conditions that mean they are expected to die within 12 months.
Effective end of life care improves the quality of life of the dying person and those important to them.
What we've published on this topic
Key findings from the report
This page provides a summary of the findings from the report. It includes insight from Marie Curies' Julie Pearce (chief nurse and executive director of Caring Services) and Dr Sarah Holmes (medical director, service transformation and innovation) about our role in improving end of life care.
The report looks at the impact of our guidance before the COVID-19 pandemic.
In response to COVID-19, care has been delivered differently. Changes to care during this time are likely to influence how it is delivered in the future.
Many people are unable to access support at the end of life.
We need to understand and strengthen the impact of NICE guidance on people's experience of end of life care.
Dr Sarah Holmes
Care of people approaching the end of life
- Our guideline on end of life care for adults says that people approaching the end of life should be identified in a timely way. If identification is effective and timely, this can allow people, and those important to them, to make decisions about their care.
- Our quality standard on end of life care for adults says that the opportunity to develop a personalised care plan should be part of a comprehensive holistic assessment for people approaching the end of life. Advance care plans may be included in a personalised care plan. They involve people making decisions about their future care with the help of health and social care practitioners.
- Although there has been an increase in advance care plans, 9 out of 10 people did not have one on arrival at their final hospital admission.
- People with conditions such as dementia, which are not always recognised as life-limiting, often face an additional barrier to dying in their preferred place. This is because certain care settings, for example hospices, are not always offered as an option for them.
- Healthcare professionals did not always consider the communication needs of people with dementia and sometimes assumed that the person with dementia lacked capacity.
Insight from Marie Curie
"There is a real need for data on patient and family experience of end of life care in order to understand where progress has been made and what gaps in care remain. The National Audit of Care at the End of Life should be extended to community settings to give us the richness of data that we have about end of life care in hospitals. The vast majority of people die in nursing or residential care settings and yet this is not reflected in the way that data is captured and portrayed.
Everyone should have access to good quality end of life care, wherever they access that care. There is an urgent need for services and their IT systems to work together so that patients can transition seamlessly between services and have their plans and preferences follow them."
Recognition and assessments in the last days of life
- Our guideline on care of dying adults in the last days of life recommends that adults with signs and symptoms that suggest they may be in the last days of life are monitored for further changes. This will help determine if they are nearing death, stabilising or recovering.
- Even for an experienced palliative care doctor, recognising and weighing up factors that may indicate someone is in their last days or hours of life is complex and can prove a difficult task. As soon as it is recognised that a person may be entering the last days of life, the most appropriate team member should discuss this with the person and those important to them, unless they do not wish to be told.
- People who were in their last days of life were much more likely to have an assessment of their physical health rather than their emotional or psychological needs. However, the latest figures showed a decrease in some areas of physical assessment.
- Recorded recognition of imminent death increased from 83% in 2015 to 88% in 2019. Healthcare professionals discussing the possibility of imminent death with the person rose from 23% to 27% in the same period. Healthcare professionals discussing the possibility of imminent death with those close to the dying person remained the same for both years at 95%.
Insight from Marie Curie
"We know that in the acute care setting staff often recognise that death is imminent, but they do not always have conversations with patients about their options and preferences for end of life.
A review of and ongoing support for training around communications with dying patients and their families is needed to ensure that all people at the end of life have the option to talk about dying and their plans and preferences.
We believe that compassionate conversations can provide a hopeful context and enable people to feel in control of what happens to them so that they can focus on living well until the end."
Shared decision making in the last days of life
- Our guideline on care of dying adults in the last days of life and quality standard on care of dying adults in the last days of life say that a discussion should take place about the risks and benefits of different hydration options.
- The risks and benefits of hydration options was discussed with the dying person in 10% of records. It was more frequently discussed with those important to the dying person, 35% of records in 2019.
- There has been an increase in individualised care plans for people in the last days of life, rising from 56% in 2015 to 65% in 2019. Adults in their last days of life and the people important to them should be given opportunities to discuss, develop and review an individualised care plan.
- More dying people, and those close to them, have had opportunity to discuss the individualised care plans. Individualised care plan reviews have also increased from 64% in 2018 to 80% in 2019.
- Good communication is crucial when a person is entering the last days of life. More care, less pathway's review of the Liverpool Care Pathway highlighted many examples of poor communication, for example using euphemisms such as 'making them comfortable'. Not communicating correctly at the end of life can lead to misunderstandings and unnecessary distress in people who are dying and those important to them.
Insight from Marie Curie
"It is encouraging that most people close to the dying person said that staff communicated sensitively, but still a fifth of people did not have this experience. Improvements in discussions about hydration, anticipatory medications and care plans are also welcome but again there are significant gaps.
Further improvement is needed in communication training and skills development for professionals across all care settings. It is heartening to see that the audit has demonstrated improvement in the opportunities for patients and their families to discuss the plan of care for the last few days of life and that these plans are more regularly reviewed. However, 75% of patients still have not had the opportunity to discuss their own individualised care plan in the last days of life, and further work is needed to ensure patients have the opportunity to discuss their preferences and wishes.
We are not surprised to see a slight reduction in focus on the preferred place of death, which can be difficult to achieve. Our preference is that the end of life experience is made as good as it can be, in whatever care setting, and that it should include ‘what matters most’ to the dying person."
Support for carers
- Carers often have an important role in ensuring that a loved one receives a good standard of care. Carers who provide unpaid care and support to a family member, partner or friend are often anxious. They are also physically and emotionally tired when the person they care for reaches the end of their life.
- Almost 70% of people close to a dying person felt they had enough opportunities to ask questions and discuss the dying person's condition. 78% felt they were communicated with in a sensitive and compassionate way.
- There has been a slight increase in the proportion of people close to the dying person who felt they had enough practical support from staff. This has risen from almost 58% in 2018 to 62% in 2019.
- In 2015, only 13% of people had the opportunity to talk to someone from health and social services or from a bereavement service about their feelings. Almost 21% said that they did not get this opportunity, but they would have liked to.
Insight from Marie Curie
"There is a need to understand the opportunities for assessing and meeting carers needs in all care settings, and in particular the needs of young carers. We suggest that a formal carer's assessment is fundamental.
Many people don't recognise themselves as carers and miss out on opportunities to access support. The emotional and physical burden on carers is immense and can impact on their own health and wellbeing.
There is growing evidence of a longlasting impact and legacy for carers after the person has died. Inadequate support and pre-bereavement care can have a serious impact on other aspects of their lives such as employment and social isolation."
This report highlights progress made by the health and care system in implementing NICE guidance. We recognise that change can sometimes be challenging and may require pathway reconfiguration. It may also require additional resources such as training and new equipment.
We work with partners including NHS England and NHS Improvement, Public Health England and other relevant organisations to support changes. We also look for opportunities to make savings by reducing ineffective practice.