Later life · England
Living well with a serious illness
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Some illnesses may shorten a person’s life.
There can still be good days and important goals.
What palliative care means
A life-limiting illness may affect how long you live.
Doctors cannot always know exactly what will happen.
Palliative care helps with comfort and quality of life.
It can happen alongside other treatment.
It is not only for the last days.
Learning disability alone does not mean someone is dying.
New illness and pain still need attention.
What matters to you
Tell people what makes a good day for you.
Your interests, relationships and hopes still matter.
Ask for information you can understand.
Choose who supports you in conversations.
Tell or show your team what feels uncomfortable.
Ask how pain and other symptoms can be helped.
Planning your care
Plans can cover different things that might happen.
Ask who to contact during the day and night.
Children may have a specialist children’s care team.
Plan early for moving to adult services.
You can get help recording wishes about future care.
Different planning documents have different legal rules.
Understand treatment decisions
CPR tries to restart breathing and the heart.
DNACPR means not attempting CPR if these stop.
DNACPR does not mean stopping all other care.
Learning disability alone is not a reason for this decision.
Ask for an explanation or review if you are worried.
People close to you can get support too.
Ask about practical help, breaks and bereavement support.
What you can do next
Ask about support to live as well as possible.
Make and review plans in a way you understand.
Talk with your care team Web pageThis link opens another website.
It may use harder words.
More useful links
- NHS: what end of life and palliative care involves Web page
Comfort, symptom relief and support for the person and those close to them.
- NHS: advance statements about care wishes Web page
Recording preferences, beliefs and practical wishes for future care.
- NHS: DNACPR decisions Web page
Individual CPR decisions, discussion and continuing other appropriate care.
- Together for Short Lives: transition into adult services Web page
Planning and coordinating changes between children’s and adult palliative care services.
- Together for Short Lives: life-limiting and life-threatening conditions Web page
Different illness pathways and periods of stability; diagnosis does not give an exact life expectancy.
These links open other websites.
They may use harder words.
Living well with a life-limiting condition and palliative care
Understand palliative support, living well, uncertainty, planning ahead and care towards the end of life.
Children and adults · England · Age-specific health and legal decisions
Understand palliative care
Palliative care helps with pain, other symptoms and emotional, social or spiritual needs during a life-limiting illness. It can be provided alongside treatment for the illness and is not only for the final days. Ask the GP or treating team what support is available at home, in hospital or through hospice services.
Life-limiting does not mean the last days
A life-limiting condition is expected to shorten life and cannot currently be cured. A life-threatening illness carries a risk of death but may respond to treatment. These descriptions cover different conditions and journeys; someone may have long periods of stability and live for years. Ask the treating specialist what is known, what is uncertain and what changes would prompt a review. Learning disability alone is not a life-limiting diagnosis.
Living well remains the purpose
Continue discussing relationships, education, work, interests, faith, pleasure and what a good day looks like. Palliative support can help manage pain, breathlessness, nausea, anxiety or fatigue so the person can participate where possible. Ask about practical help, equipment and breaks for carers. Avoid assuming a person’s quality of life from their diagnosis or from how much help they need.
Plan for uncertainty
Care can change if the person improves, remains stable or becomes more unwell. For children this is often called parallel planning: preparing for several possible situations instead of predicting one fixed outcome. Ask what symptoms to watch for, who to call, what urgent treatment may help and how wishes will be reviewed. Palliative care is not a reason to overlook a treatable illness.
Make care accessible and coordinated
Ask for a named contact, a clear plan and numbers for help at night or weekends. Include communication methods, sensory needs, positioning, comfort and how the person shows pain. People who do not use speech need an appropriate pain assessment. Familiar supporters can help staff recognise changes from the person’s usual presentation.
Children and moving to adult services
Children with life-limiting conditions may need a children’s palliative care team and a named specialist coordinating their care. Ask early how health, hospice, social care, education and equipment will transfer into adulthood. Agree named contacts, referrals, prescriptions, overnight support and a handover date before services change. Adult eligibility and service arrangements can differ. Include the young person’s own communication, goals and relationships, as well as family support.
Keep the person involved
Offer understandable information and time to express wishes, including who should be involved. A learning disability does not by itself mean someone lacks capacity. Capacity concerns a particular decision at the relevant time. Where capacity is lacking, the applicable legal decision-making process must still consider the person’s wishes and involve appropriate people. For children and young people, ask the team to explain the age-specific consent and decision-making rules; the adult advance-decision rules below do not apply to everyone under 18.
Record future preferences
An advance statement records wishes such as preferred surroundings, important relationships, beliefs and everyday comforts. It is not legally binding, but must be considered when care decisions are made. Discuss what can realistically be arranged, who should receive a copy and when to review it. Preferences can change.
Understand advance refusals
An adult aged 18 or over with capacity can make an advance decision refusing specified future treatment. A valid and applicable refusal is legally binding when the person cannot make that treatment decision. There are additional formal requirements for refusing life-sustaining treatment. Ask a clinician or qualified adviser to explain these carefully.
Understand decisions about CPR
CPR attempts to restart breathing and circulation after they stop. DNACPR means not attempting CPR; other appropriate treatment, nursing care and comfort continue. Decisions must be individual: learning disability alone is not a reason. Ask for an accessible explanation, appropriate involvement and a review if there are concerns or circumstances change.
Support people close to the person
Discuss practical support, emotional needs and bereavement help for family, friends and other people important to the person. Agree who can explain changes and coordinate contact. Keep checking comfort and communication throughout care, including when the person cannot express choices in their usual way.
Words you could use
“Please explain the care options accessibly, record this person’s wishes, and clarify what any treatment decision does and does not cover.”
More useful links
- NHS: what end of life and palliative care involves Web page
Comfort, symptom relief and support for the person and those close to them.
- NHS: advance statements about care wishes Web page
Recording preferences, beliefs and practical wishes for future care.
- NHS: DNACPR decisions Web page
Individual CPR decisions, discussion and continuing other appropriate care.
- Together for Short Lives: transition into adult services Web page
Planning and coordinating changes between children’s and adult palliative care services.
- Together for Short Lives: life-limiting and life-threatening conditions Web page
Different illness pathways and periods of stability; diagnosis does not give an exact life expectancy.
These links open other websites.
They may use harder words.
Where the information comes from
Links checked 1 November 2026.
These links open other websites.
They may use harder words.
- NHS: what end of life and palliative care involves Web page
Comfort, symptom relief and support for the person and those close to them.
- NHS England: end of life care for people with a learning disability PDF
Individual communication, comfort, pain assessment and coordinated care.
- NHS: the Mental Capacity Act Web pageFuller information
Decision-specific capacity, support to decide, best interests and legal decision-making arrangements.
- NHS: advance statements about care wishes Web page
Recording preferences, beliefs and practical wishes for future care.
- NHS: advance decisions to refuse treatment Web page
Age, capacity and the requirements for a valid, applicable advance refusal.
- NHS: DNACPR decisions Web page
Individual CPR decisions, discussion and continuing other appropriate care.
- NICE: care for children with life-limiting conditions Web page
Quality of life, named specialists, family support, parallel planning and transition.
- Together for Short Lives: transition into adult services Web page
Planning and coordinating changes between children’s and adult palliative care services.
- Together for Short Lives: life-limiting and life-threatening conditions Web page
Different illness pathways and periods of stability; diagnosis does not give an exact life expectancy.