caring at the end of life
by Kendra Inman
The majority of people with a serious illness want to die at home surrounded by family and friends. But caring for someone at home during the final stages of life is both physically and emotionally demanding. The charity Marie Curie Cancer Care says carers should not underestimate the weight of the task. The decision to care for someone at home should not be taken lightly but after careful thought and honest discussion.
© C4
Carers who look after someone with a terminal illness will need help and support. This can come from friends and relatives as well as from professionals such as GPs, district nurses and social workers. Voluntary organisations such as Marie Curie, Macmillan or local carers' groups can also help (see help and info). Check out our other features on carers and carers and stress.
how it feels
Each carer's experiences are unique to their situation but they do have some feelings in common, says Marie Curie Cancer Care. In discussions with Marie Curie nurses, patients' families express all manner of frustrations, anger, sadness and despair at different times.
'I'm afraid to talk about my feelings in case I upset him/her' is a frequent comment.
'I'm so tired I wish he/she would die', is another.
'I feel angry with him/her for leaving me by dying'.
They also worry about the death itself, wonder what will happen and whether or not they'll be able to cope.
All feelings no matter how unexpected are 'normal' in such stressful situations, say the nurses.
before they leave
Before the patient is discharged from hospital it is a good idea to discuss how he or she wants to be cared for. At this stage both carer and patient need to be realistic about what they can do. Also carers need to ensure they are included in discussions with medical professionals who have been responsible for their relative or friend's care and treatment. A case conference involving hospital, services staff, the patient and their family will usually be held to plan the care.
A support package should be agreed before the patient is discharged from hospital. The patient's social worker, sometimes called a care manager, should make an assessment of the patient's needs and organise a range of support services. The assessment should have been carried out with the help of hospital staff.
If you are unsure about what has been agreed then you must talk to the staff and ask to see a social worker. Similarly you should not agree to anything you're unhappy about. Remember the 'care package' is not set in stone and arrangements can be changed later if you find you need more or less help.
Hospitals should inform the patient's GP that they will be returning home and patients should receive a visit soon after discharge. If you don't hear anything contact the surgery yourself and arrange a home visit.
your rights
The Carers and Disabled Children Act, which came into effect in England and Wales in 2001, gave carers the right to an assessment of their needs in relation to their caring role. This is regardless of whether the person they are caring for receives services.
Under the Act, carers are also entitled to services in their own right. These services are defined as anything that promotes the health and wellbeing of the carers. The help can range from driving lessons, counselling or even money to replace a broken washing machine.
There is however no guarantee that services will be provided – the legislation did not come with any new money for implementation. And councils are able to charge carers for the services they receive.
what's on offer?
Services that social workers can arrange include meals on wheels, a laundry service, benefits advice, equipment, home care, a sitting service and respite care. Very often home care services are means tested, which means the recipient will be asked to pay towards the cost of the service if they can afford to.
The hospital or social worker may also arrange a consultation with an occupational therapist who can assess what equipment is needed to help care for the patient and whether any adaptations, such as the installation of ramps or lifting equipment, need to be made before the patient is discharged.
need a break?
Seriously ill patients may need a stay in a hospice, hospital or nursing home for a while to bring pain and other symptoms under control and give carers a break – known as respite care. It is quite common for terminally ill patients to have short stays in a hospice or use a day hospice service and then return home again.
practical ways to prepare
The charity CancerBACUP offers the following advice to carers preparing for a friend or relative to return home:
- Think about where they are going to sleep. The patient might prefer to be upstairs where it's quieter or downstairs in the throng, or as near to the bathroom as possible.
- Get their room ready. Ensure it's cheerful and welcoming as well as practical. Hang pictures, collect together favourite objects or memorabilia.
- Put the bed or chair in a good position, preferably with a view out of a window.
- Have a telephone extension put into their room and/or move a radio or cassette player within their reach.
when death is near
Even when a death is expected, in practice few carers are fully prepared for the range of emotions they'll experience in bereavement. Helping someone sort out their affairs at the end of life can give both parties increased peace of mind.
Practical arrangements that need to be made before someone dies include making a will and planning a funeral.
Carers may find it difficult to discuss these subjects openly, so too may the patient. A doctor, nurse, social worker or other friend or relative could be may be better placed to discuss the patient's wishes.
help and info
Channel 4 is not responsible for the content of third party sites.
organisations
CancerBACUP
3 Bath Place
Rivington Street
London EC2A 3JR
Helpline: 0808 800 1234 or 020 7739 2280 (Mon-Fri 9am-8pm)
Tel: 020 7696 9003 (Mon-Fri 9am-5.30pm)
Website: www.cancerbacup.org.uk
Provides up-to-date information, advice and support to cancer patients, and their families and friends on all aspects of cancer and its treatment, and on the practical and emotional problems of living with the illness. The helpline, above, is staffed by specialist cancer nurses.
Macmillian Cancer Relief
89 Albert Embankment
London SE1 7UQ
Cancerline: 0808 808 2020 (Mon-Fri 9am-6pm)
Textphone: 0808 808 0121
E-mail: cancerline@macmillan.org.uk
Website: www.cancerlink.org
Contact the freephone Cancerline, staffed by people with experiences of cancer, for cancer information and support, details of local organisations, and relevant publications and other resources.Website has further information.
Marie Curie Cancer Care
89 Albert Embankment
London SE1 7TP
Tel: 0800 716 146
E-mail: info@mariecurie.org.uk
Website: www.mariecurie.org.uk
Marie Curie Nurses care for seriously ill cancer patients in their own homes and should be accessed through the district nurse or GP. Marie Curie has 10 hospices around the UK.
Carers UK
20-25 Glasshouse Yard
London EC1A 4JT
CarersLine: 0808 808 7777 (Wed-Thur 10am-12pm, 2-4pm)
E-mail: info@carersuk.org
Website: www.carersuk.org
National voice of carers in the UK. Provides free information and advice on any aspect of caring, including dealing with the stresses, strains and financial problems that caring can bring. Can put carers in touch with one another.
Crossroads
10 Regent Place
Rugby CV21 2PN
Tel: 0845 450 0350 (Mon-Fri 8.30am-5pm)
E-mail: communications@crossroads.org.uk
Website: www.crossroads.org.uk
Provides practical support to carers by offering short-term breaks in the home. Can provide details of local Crossroads schemes.
Princess Royal Trust for Carers
142 Minories
London EC3N 1LB
Tel: 020 7480 7788 (Mon-Fri 9am-5pm)
E-mail: help@carers.org
Website: www.carers.org
Provides information, support and practical help to carers through its network of carer centres. The website has details of local carers centres, and details of benefits, rights and support.
websites
Age Concern – Arranging a funeral
www.ageconcern.org.uk/ ...
Provides information to help those people who have to organise someone's funeral and/or those people who want to plan ahead for their own funeral.
Carers
www.carers.gov.uk
Department of Health site featuring information for carers about government services and other help, government policy on carers, and a range of links.
Caring Decisions
www.caringmatters.dial.pipex.com
Comprehensive source of information and advice for patients, carers, and professionals to make informed decisions about long-term care. Has details on a range of subjects such as care homes, home help and rights, plus details of books and lots of links.
Dying with Cancer
www.cancerbacup.org.uk/ ...
An online booklet and a link to a range of questions and answers on death, dying and bereavement.
reading
 |
The Selfish Pig's Guide to Caring by Hugh Marriott (Polperro Heritage Press, 2003) |
 |
Care of the Dying: A Pathway to Excellence by John Ellershaw and Susie Wilkinson (Eds) (OUP, 2003) |
 |
Caring for Someone with Cancer by Toni Battison (Age Concern Books, 2003) |
 |
The Dying Soul: Spiritual Care at the End of Life by Mark Cobb (Open University Press, 2001) |
 |
The Complete Idiot's Guide to Caring for Aging Parents by Linda Colvin Rhodes (Alpha Books, 2001) |
 |
Dying at Home: A family guide for caregiving by Andrea Sankar (John Hopkins University Press, 1999) |
 |
Beyond dying: the mystery of eternity by Ted Harrison (Lion Publishing, 2002) |
 |
Palliative Care: The Nurse's Role edited by Jean Lugton and Margaret Kindlen (Churchill Livingston, 1999) |
|
Communicating with Dying People and Their Relatives by Jean Lugton (Radcliff Medical Press, 2001) |
|
|
(June 2002, resources updated February 2005)
