End of Life Care at Home: Support for Individuals and Families

Care may be provided by a combination of NHS professionals, specialist palliative care teams, hospice services, family members and home care providers.

What is end of life care?

End of life care is the treatment, care and support provided to someone who is approaching the end of life. It may include care during the last months, weeks or days, depending on the person’s condition and circumstances.

Support can focus on:

• Managing pain and other symptoms.

• Personal care.

• Emotional and spiritual support.

• Communication with family members.

• Planning ahead.

• Supporting the person’s wishes.

• Helping the family prepare for changes.

• Maintaining dignity and comfort.

End of life care can take place at home, in hospital, in a care home or in a hospice.

Can end of life care be provided at home?

Yes. Someone may be able to receive end of life care at home if their needs can be safely supported and the appropriate services are available.

The NHS advises people to ask their GP what end of life and hospice care is available locally.www

Care at home may involve:

• GP support.

• District or community nurses.

• Specialist palliative care teams.

• Hospice at home services.

• Marie Curie or other voluntary-sector support.

• A home care provider.

• Family members and unpaid carers.

• Equipment and medication arranged through healthcare services.

The exact services available depend on the person’s location, condition and care needs.

What help may be needed?

End of life care at home can include support with:

• Washing, dressing and personal care.

• Changing position safely.

• Eating and drinking, where appropriate.

• Continence care.

• Comfort and reassurance.

• Keeping the room calm and comfortable.

• Communicating with healthcare professionals.

• Supporting relatives and visitors.

• Following an agreed care plan.

A professional carer should work alongside the clinical team and follow the instructions provided. Medication and symptom management must be overseen by the appropriate healthcare professionals.

Planning end of life care

Planning early can help the person remain involved in decisions about their care. It can also give family members clearer guidance if the person becomes unable to communicate their wishes.

Discussions may include:

• Where the person would prefer to receive care.

• Who they want involved.

• What matters most to them.

• Any cultural, religious or personal preferences.

• Preferred treatments.

• Who should make decisions if they cannot.

• Practical arrangements for the final days.

• Who to contact if symptoms change.

A care plan should be reviewed if the person’s condition or wishes change.

It is important to ask the healthcare team what to do outside normal working hours. Families should have clear contact details and know when to seek urgent help.

Is end of life care at home free?

Some NHS and hospice services are free, but the cost of other support depends on the type of care required and where the person lives.www

If someone has a rapidly deteriorating condition and may be entering a terminal phase, they may be eligible for NHS Continuing Healthcare through the Fast Track pathway. An appropriate clinician must complete the Fast Track Pathway Tool.www

NHS Continuing Healthcare can fund an agreed package of care at home where the person meets the eligibility criteria. It is based on assessed health needs rather than simply a diagnosis.

Ask the GP, consultant, district nurse or palliative care team about the funding and support options available.

Supporting family members

End of life care can be emotionally and physically demanding for relatives. Family members may need help with:

• Personal care.

• Moving and repositioning.

• Eating and drinking.

• Managing visitors.

• Understanding changes in the person’s condition.

• Taking regular breaks.

• Knowing who to call for advice.

• Coping with grief and uncertainty.

Respite care can give family members time to rest while the person continues receiving support at home.

Nobody should feel that they have to manage everything alone. Tell the healthcare team if the level of care is becoming too much or if the person’s needs have changed.

Choosing home care support

When considering a home care provider, ask:

1. Does the provider have experience supporting people at the end of life?

2. Can carers provide personal care and comfort support?

3. How quickly can support begin?

4. Will the person receive a regular care team?

5. How will the provider work with nurses, GPs and hospice services?

6. What happens if needs change?

7. Is overnight support available?

8. What are the full costs?

9. How are urgent concerns handled?

10. Can family members receive updates with consent?

At Ashton Care, we understand how important it is for people to receive compassionate, respectful support in familiar surroundings. Our team can discuss practical home care options and work within the care plan set by the relevant healthcare professionals.

If you are considering end of life care at home in West Sussex, contact Ashton Care to discuss your circumstances and the next steps.