The care and support we need at the end of life
Achieving this Higher Ambition will mean that:
Everyone in Suffolk and North East Essex has flexibility, choice and control over their care, and support for those closest to them, at the end of their life.
As an Integrated Care System we will ensure that:
- People approaching end of life and their families are prepared and informed, and able to make early decisions and choices about their care and treatment
- People at end of life and their families receive the best quality care and support
- People bereaved have the support they need to cope with trauma and loss
Something as fundamental as the care a person receives in their dying months should not depend on where they live, or the level of deprivation they experience. Having genuine choice about how you are cared for and where you spend the last days and hours of your life can help address the disorienting feeling that everything is happening to you and around you. There continues to be considerable geographic variation and inequality of access to personalised and high quality end of life care. The report by MacMillan “Final Injustice Variation in end of life care in England” (December 2017) highlights research evidence that more people have poorer experiences of dying in hospital compared to dying at home, in a hospice or in a care home. There are no current officially collected data on how many people are able to end their life in the place of their choice. As an ICS we aim to address this.
We wanted to put people's choices at the centre of their future care planning, ensuring people receive the right care, at the right time and in the right place towards the end of their lives.
In 2013 we developed an electronic register to capture people's preferences for future care. This register can be used buy anyone in North East Essex living with life limiting illness, frailty, dementia or any other chronic disease at risk of threatening exacerbation. This register can be viewed by health care professionals involved in the person's care, including North East Essex Primary Care, Colchester Hospital, EEAST, St Helena, Care UK, Anglian Community Enterprise and most recently Essex Partnership University Trust. The register supports clinicians to coordinate care around the person's wishes. A locally enhanced service for primary care, commissioned over the last six years, has supported the identification of people who may benefit from the register and recording of their wishes.
Over the last six years over 9,000 people have had the opportunity to record their preferences for care. The majority have recorded a preference to be cared for outside of acute hospital at the end of their lives. Only 25% of people who die with a My Care Choices record die in hospital, compared to the local average of 46%. We are continuing to build on this success. A new register software solution integrated with primary care systems was launched in 2018 allowing improved access for GP's. The next wave of development this year will allow access for social care and care home staff.
The Healthwatch Essex report ‘Constructing the End of Life: Tools, Conversations, Ideas of Home’ (2018) concluded end of life care planning is a process, not an end in itself:
Professional medical home care is essential for supporting families
In order for families to be able to support a dying person, efficient, continuous access to care is needed, as well as space, health, social and emotional support to spend time with their loved one. The effects of caring for dying person are extensive and the impact reverberates for a long time after they die. Dying patients were also keenly aware of and many chose hospital as a consequence; planning end of life and where death takes place is not just about the patient. Creating support structures for families after a bereavement is an essential component to end of life care.
For further information see https://healthwatchessex.org.uk/library/
Advance care planning as a conversation not a goal
Planning for end of life is important, but like most plans, end of life plans rarely go as expected. Plans are better understood as a tool to facilitate people’s needs at the end of life rather than a written, complete plan. We need flexible approaches, acknowledging the complexity and variables that come to bear on the end of life phase.
Many people do not know what the process of dying looks like or what to expect. People and families need education on what the end of life period can look like, what to expect as their relative enters the dying phase, for people caring at home, when and when not to call for help and what support is available
In end of life, there are no second chances to get it right.
People have the right to die in peace, and their loved ones have the right to the best possible memories of that time.
No one should die in pain, in distress or alone.
The Macmillan report ‘The Final Injustice: Variation in end of life care in England’ (2017) highlights some of the challenges in people’s experiences of end of life care:
- There is unacceptable geographic variation and inequality in the end of life care for people with cancer. While some people have choices around where they die, and can spend time with the people who matter to them, others spend their final year in and out of A&E, and have little opportunity to access the care of their choosing.
- The care a person receives in their dying months should not depend on where they live or their level of deprivation. However, the most deprived people dying due to cancer are 18% more likely to die in hospital.
- An estimated 48,000 people a year experience poor care in the final three months of their lives. 10% of those who die in England each year spend the last two days of their lives without adequate pain relief. Real choice depends on people’s confidence that they will receive the right care at the right time in the place they choose to die.
For further information see https://www.macmillan.org.uk/_images/MAC16904-end-of-life-policy-report_tmc9-321025.pdf
HOW we plan to make a difference:
1.1 People approaching the end of life, including with long term conditions such as dementia or multiple sclerosis are identified and supported to prepared and informed.
- We will provide accessible information, preparation and advice about end of life care and local services and resources for people and families. Early identification enables open and sensitive discussions, more people to consider their choices and wishes over time, rather than in a crisis. Preparation and information will enable people to be better equipped, understand what to expect, the services and options available what to do and who to contact.
- Training will help health and care staff identify and support people approaching end of life. Training staff helps them prepare for sensitive discussions and to support decision-making. Hospices are a valuable resource for training and advice.
1.2 People have choice and control over their care, and flexibility whenever their needs and preferences change. We will enable this by:
- Proactive, flexible and personalised care planning for everyone identified as being in their last year of life. A consequence of better quality care will be a reduction in avoidable emergency admissions and more people being able to die in a place they have chosen.
- Personal Health Budgets for those receiving specialist end of life care, by April 2024. Personal Health Budgets give people greater choice and control over how their care is planned and delivered.
- Integrated care services working together to provide quality appropriate holistic clinical care wherever and whenever it is needed. High quality care improves people’s experience of care, and lessens their pain and distress at the end of life. It also helps their carers and families through the trauma of this critical time. Care should be integrated between health and social care, statutory and voluntary sectors, and primary, secondary and tertiary care.
- End of life support that is co-ordinated, flexible and available 24/7. This will prevent people and their families from suffering unnecessary distress.
- Records detailing people’s needs, choices and preferences, that are accessible all relevant partners in care. Shared care records, available to all those involved in care including the NHS, care services, hospices and/or care homes, helps to ensure high quality care and support.
- Ensuring people at end of life have full access to the pain management they need. Effective pain management ensures people and their carers and families do not experience unnecessary distress, particularly in the last days and weeks.
- Supporting people to access to all eligible welfare benefits for people at end of life are fast tracked. People at end of life and their families often face significant costs and reduced income. Ensuring prompt access to all available benefits helps ease the financial impact.
- Ensuring Continuing Healthcare assessments are fast tracked. Fast-tracking funding for end of life care ensures consistent and high-quality support is in place for people and their families.
- Ensuring shared clarity for people, their families and clinicians about the process, use and status of Do Not Attempt CPR decisions.
- We will increase local children’s palliative and end of life care services including children’s hospices, by 2024. NHS England will match-fund clinical commissioning groups (CCGs) who increase their investment in this area, to more than double the NHS support funded.
- People with additional or complex needs and their families will have support to understand the condition, make informed choices wherever possible, and have their needs taken into account in end of life care planning and delivery. Complex needs may include for example people with learning disabilities, dementia, sensory impairments, substance misuse, homelessness or living in deprivation. Personalising care involves recognising complexity and incorporating this into care planning and delivery, to ensure equal access to care and equality in care provision.
- We will develop a skilled workforce to support people approaching end of life, their carers and families. Staff should receive standardised and accredited training. A highly skilled and qualified workforce ensures that people, their carers and families are listened to, and cared for with sensitivity, dignity and respect. Training can be accredited through the Gold Standard Framework or local frameworks, and should be available to everyone involved in care and support, including care homes and domiciliary care, hospitals, primary and community care, providers and commissioners. 2.5 People have the right equipment and facilities for their needs at home.
- People will have prompt access to equipment and adaptations to be cared for in their own homes. People should have the equipment they and their carers need, to return to their own homes and to remain there safely wherever possible.
2.1 People and their carers and families receive the best quality end of life care. We will enable this by:
2.2 Children approaching end of life and their families receive high quality care tailored to their needs.
2.3 People at end of life who have additional or complex needs have high quality support tailored to their needs.
2.4 People receive care co-ordinated and delivered by highly trained staff.
- Carers and families will have high quality bereavement support, including emotional, practical, spiritual and financial support when needed. Supporting bereaved people effectively helps them to achieve better health and wellbeing, and to cope with the significant challenges they face. Availability of support should be consistent across the ICS, to reduce variation.
- Support will be tailored according to people’s needs, the circumstances of the person’s death, and incorporate any complex or additional issues. Bereaved people’s needs may differ according to whether the person died following accident or terminal illness, child deaths etc. and support provided should recognise the specific challenges of people’s diverse experiences. Support is also given in communities and settings such as schools.
- We will improve liaison and co-ordination between palliative care support and bereavement support services. Improved liaison ensures that bereaved people have access to support when they need it.
- We will ensure bereaved people to return equipment promptly. Prompt collection of equipment such as hospital bed, wheelchair etc. from home enables bereaved people to recover from the trauma of providing end of life care.
- Local bereaved people will be asked about their experiences, and commissioners and services implement learning from their experiences. Surveys of local bereaved people should align to the national VOICES survey to enable comparison to national findings.
3.1 People bereaved are supported to manage the impacts of their loss.
3.2 People bereaved have input into service development.
- Using a public health approach, we will promote ways that people can talk about death and grief, are informed, prepared, equipped and are inspired to support each other. Compassionate communities can provide practical, social and spiritual support to each other, providing additional resources that also complement health and care services
4.1 People have mutual support in end of life and bereavement from their community.
- Improved quality of care in accordance with the Gold Standards Framework
- Increase in percentage of deaths that occur in the place of choice - at home, in care homes, in hospital, in hospices and in other places, all ages
- Improved reported pain management in end of life care
- Higher proportion of people with a care plan and advanced care wishes recorded
- More people at end of life with self- directed support, personal budgets, personal health budgets and direct payments
- Increase in positive responses to survey of bereaved people of quality of care at end of life