What does end of life care involve?
End of life care is support for people who are in the last months or years of their life.
Being told that you or someone you love and care for has a life limiting illness is tough news to receive. The care an individual needs at this time will be focused upon supporting him or her to have the best possible quality of life, independence and control over their life and care.
Palliative and end of life care is about treatment and care focusing on the needs of the whole person as well as their family, carers and friends. It is not just about managing pain and other symptoms but includes support to deal with emotional needs, social and spiritual needs, care in bereavement and help dealing with the financial effects of facing an end of life situation.
In this section we’ve tried to answer many difficult questions but please do email or post on our forum if you still need advice.
1) How much control do I/we have over our care?
You have the right to express your wishes about where you would like to receive care and where you want to die. You can receive end of life care at home or in care homes, hospices or hospitals, depending on your needs and preference.
2) Who provides end of life care?
Different health and social care professionals may be involved in end of life care, depending on a persons needs. For example, hospital doctors and nurses, your GP, community nurses, hospice staff and counsellors may all be involved, as well as social care staff, chaplains (of all faiths or none), physiotherapists, occupational therapists or complementary therapists.
If a person is being cared for at home or in a care home, their local GP has overall responsibility of care. Community nurses usually visit at home, and family and friends may be closely involved in caring too.
3) What is palliative care?
End of life care includes palliative care. If someone has an illness that can’t be cured, palliative care makes them as comfortable as possible, by managing the pain and other distressing symptoms. It also involves psychological, social and spiritual support for everyone involved.
Palliative care isn’t just for the end of life. You may receive palliative care in the earlier stages of an illness while you are still receiving other therapies to treat your condition.
4) Who provides palliative care?
Many healthcare professionals provide palliative care as part of their jobs. An example is the care you get from your GP or community nurses. Some people need additional specialist palliative care. This may be provided by consultants trained in palliative medicine, specialist palliative care nurses or specialist occupational therapists or physiotherapists.
Palliative care teams are made up of different healthcare professionals and can co-ordinate the care of people with an incurable illness. Palliative care services may be provided by the NHS, your local council or a charity.
5) When does end of life care begin?
End of life care should begin when you need it and may last a few days, or for months or years.
People are considered to be approaching the end of life when they are likely to die within the next 12 months, although this isn’t always possible to predict. This includes people whose death is imminent, as well as people who:
- have an advanced incurable illness such as cancer, dementia or motor neurone disease
- are generally frail and have co-existing conditions that mean they are expected to die within 12 months
- have existing conditions if they are at risk of dying from a sudden crisis in their condition
- have a life-threatening acute condition caused by a sudden catastrophic event, such as an accident or stroke
6) How do I find out about end of life care services in my area?
If you are caring for someone who is approaching their end of life and you want to find out about the care and support available, your first step is to speak to your GP or to call the number your healthcare professionals have given you.
Part of their job is to help you understand which services are available locally. You can ask about all sorts of help – for instance, there may be particular night-time services they can tell you about.
Below are some websites and local Norfolk services that will also be able to help.
Dying Matters – Find Me Help
Dying Matters aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life. Their UK wide directory of services called ‘Find Me Help’ – details a wide range of practical, financial and caring services – for example, getting help around the house, taking control of your finances or speaking to a counsellor.
Carers can search for different kinds of support, including medical help, respite cover, carers’ support groups and bereavement services.
Care Homes in Norfolk offering Palliative care
Care Homes.co.uk have a searchable database of care homes across the country offering Palliative Care. Click HERE for more information.
Macmillan can help you find practical and emotional support at the end of life and through bereavement.
Priscilla Bacon Lodge, Norwich
Tel: 01603 255720 / www.priscillabaconhospice.org.uk
Priscilla Bacon Lodge (PBL) in Norwich specialises in End of Life/Palliative care services, you will need a referral from your GP or hospital consultant.
- Specialist inpatient service – this is for people who have complex palliative care needs including physical, emotional, social and/or spiritual needs. It is a short-stay unit which has been providing palliative care to local people for more than 25 years.A patient is referred to PBL when their needs require support from a specialist multi-disciplinary palliative care team, and when this cannot be adequately provided in a person’s current place of care, or within their own home.
- Palliative Care Specialist Day Unit – The Rowan Centre Day Unit provides multidisciplinary support for people who are dealing with advanced progressive incurable illnesses for example cancer, motor neurone disease and end stage heart failure.
- Breathlessness Service – run within the Day Unit to help support patients and their carers living with this difficult symptom.
- The Psychological Service – helps patients who are living with a life-limiting illness and during end-of-life care, as well as their families. Counselling and other forms of psychological support are provided by an experienced team with special skills in helping people cope with the emotions and changes faced during illness, end-of-life care and bereavement.
- Specialist Community Service – the PBL Community Specialist Palliative Care Team provide home visits and outpatient appointments following referral for patients with complex palliative care needs.
Swaffham & Litcham Home Hospice Support
Providing support for approximately 250 patients each year who have cancer or terminal illnesses. The Home Hospice provides support and reassurance for patients and their families, working closely with partners in the NHS.
Services are free and available to patients in Swaffham & Litcham and the surrounding areas and include home support, ‘Home Companionship’ for patients, carers support, assistance with transport, an art and craft group, equipment loan, Headstart, an ‘Open Door Drop-In’ support group for people affected by cancer, complementary therapies such as Reflexology and Reiki, a bereavement group, bereavement support and counselling.
St Elizabeth Hospice, Lowestoft
St Elizabeth Hospice is for people living with progressive and terminal illnesses. Centred around the individual’s needs and they provide specialist support to both the patient and family, wherever it is needed, in the home, in the community or at their hospice.
OneCall 24-hour specialist advice 0800 56 70 111
The Norfolk Hospice, Kings Lynn
A registered charity in West Norfolk offering support, care and advice to patients over the age of 18, their carers and families through all stages of their illness including bereavement. Tel: 01485 601700
If you would like to talk to people going through a similar experience, our forum is a wonderful place to receive support and advice.