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Hospice and End of Life Care
End of life care is designed to help someone live as well and as comfortably as possible towards the end of their life. It includes physical care and symptom control, but also emotional, practical, social and spiritual support for the person who is dying and those close to them.
Care may be provided at home, in a hospice, in a care home or in hospital. The right place will depend on the person's wishes, their care needs, the support available and what is realistically possible as their condition changes.
What it Means
Palliative care aims to improve quality of life for people living with an illness that cannot be cured. It can begin well before the final days of life and may be provided alongside other treatments.
End of life care is care for people who are approaching the end of their life. Its purpose is to help the person live as well as possible until they die, with dignity and with good management of pain and other symptoms.
Care should take account of what matters to the individual, including their priorities, beliefs, relationships and preferences about treatment and where they would like to be cared for.
Family members and carers should also be given information and support.
Being Cared for at Home
Many people would prefer to remain in familiar surroundings at the end of life.
Care at home can work very well, but it is important to understand what support will be needed and what family or friends can realistically provide.
Your GP and community nursing team may be involved in coordinating medical and nursing care. Depending on your needs, other professionals may include specialist palliative care nurses, healthcare assistants, occupational therapists, social care staff and other community services.
Equipment such as a hospital-style bed, pressure-relieving equipment or a commode may sometimes be arranged to make care safer and more comfortable.
In Leicester, Leicestershire and Rutland, the Integrated Community Specialist Palliative Care service brings together LPT and LOROS staff to support adults with complex palliative care needs, including people in their last days of life. Access is normally through a healthcare professional.
Hospice Care
Hospices specialise in palliative and end of life care.
Hospice care does not necessarily mean moving permanently into a hospice. Hospice services can include inpatient care, symptom management, day services, support for families and carers, and specialist advice or care in a person's own home.
LOROS provides specialist care for adults with terminal illness across Leicester, Leicestershire and Rutland. Its services include inpatient care, care in the last days of life and advice and support in people's homes. Services are provided according to clinical need and referrals are generally made by a healthcare professional.
Children and young people with life-limiting conditions have different specialist services available locally, including Rainbows Hospice and the NHS Diana Children's Community Service.
Care Home and Hospitals
If someone already lives in a care home, it may be possible for them to remain there during their final days if the home can provide the care they need.
The care home should work with the person's GP, community nurses and specialist services where appropriate to manage symptoms and provide end of life care.
Hospitals also provide palliative and end of life care. A hospital may be the most appropriate place if someone has complex medical needs, needs treatment which cannot be provided elsewhere or is already in hospital when their condition deteriorates.
If someone wants to leave hospital to be cared for elsewhere, the hospital team can discuss whether this is possible and arrange referrals and care planning.
The person's needs can change, sometimes quickly, so a preferred place of care may not always remain possible. This does not mean that the plan has failed. The priority should remain safe, compassionate care that reflects the person's wishes as far as possible.
Who May be Involved
End of life care often involves a team rather than one individual.
Depending on the person's needs, this may include their GP, community or district nurses, specialist palliative care doctors and nurses, hospital teams, hospice staff, healthcare assistants, social workers, occupational therapists, pharmacists and paid carers.
Different professionals have different roles. Some manage medication and symptoms, while others provide personal care, equipment, emotional support or help the family understand what services are available.
Faith leaders, chaplains or other sources of spiritual support can also be important if the person would like this.
It is helpful for the person who is ill and those supporting them to know who their main contacts are, particularly whom to call outside normal working hours.
Choosing Where
Where someone would prefer to be cared for and to die is a very personal decision.
For some people, being at home and surrounded by familiar things is most important. Others feel safer knowing that specialist staff are nearby in a hospice, care home or hospital.
Talk about preferences with the healthcare team as early as possible. They can explain what support is likely to be available and help record important wishes.
An Advance Care Plan or ReSPECT plan may already record some of these conversations. ReSPECT provides personalised clinical recommendations for an emergency in which a person is unable to make or express decisions themselves.
Preferences can change, and sometimes circumstances mean that the original plan is no longer possible. What matters is that decisions continue to be made with the person's wishes, comfort and safety in mind.
