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.
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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. Check out the features on carers in the family section and carers and stress in the stress section.
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. The charity also produces an excellent book, Coping at Home: Caring for someone with advanced cancer (see help and info for details).
- 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.
A Channel 4 booklet, When Someone Dies, offers guidance on how to deal with the practical issues. If you would like a copy, please send a postal order or cheque (made payable to Channel 4 Television) for £2.50 (including postage and packing) to: When Someone Dies, PO Box 400, Wetherby, LS23 7LG or phone + 44 (0) 8701 246 444.
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
Tel: 0808 800 1234 (Mondays to Fridays 9am-7pm)
Website: www.cancerbacup.org.uk
Free cancer information service staffed by qualified and experienced cancer nurses. Also provides publications on all aspects of cancer, written specifically for patients and their families. Runs a growing number of local centres.
Macmillan Cancer Relief (incorporating CancerLink)
89 Albert Embankment
London SE1 7UQ
Macmillan CancerLine: Freephone 0808 808 2020 (Mondays to Fridays 9am-6pm)
Textphone: 0808 808 0121
E-mail: cancerline@macmillan.org.uk
Website: www.macmillan.org.uk
UK charity supporting people with cancer and their families, with specialist information, treatment and care. Can provide details of cancer support and care organisations throughout the UK. The information line also gives details of Macmillan nurses and doctors. Details of regional services can also be found on the website.
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
Ruth Pitter House
20-25 Glasshouse Yard
London EC1A 4JT
CarersLine: 0808 808 7777 (Mondays to Fridays 10am-12pm, 2-4pm)
E-mail: Info@ukcarers.org
Website: www.carersonline.org.uk
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
Warwickshire 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 (Mondays to Fridays 9am-5pm)
E-mail: info@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/info/dying.htm
An online booklet and a link to a range of questions and answers on death, dying and bereavement.
reading
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The Selfish Pig's Guide to Caring |
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Care of the Dying: A Pathway to Excellence |
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Caring for Someone with Cancer |
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The Dying Soul: Spiritual Care at the End of Life |
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The Complete Idiot's Guide to Caring for Aging Parents |
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Dying at Home: A family guide for caregiving by Andrea Sankar |
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Beyond dying: the mystery of eternity (Lion Publishing PLC, 2002) |
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Palliative Care: The Nurse's Role |
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Communicating with Dying People and Their Relatives |
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(June 2002)
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