hospices
by Kendra Inman
Most of us find it difficult to think or talk about death and dying. But those with a life-threatening or terminal illness may want and need to plan for the end of life.
© C4
Research has shown that most seriously ill people want to die at home, in their own bed surrounded by family and friends. However, a home death is not always possible or practical due to the high level of medical and other support needed. Check out our features on caring for someone with a terminal illness at home and tips for carers on tackling stress.
planning for the end of life
Patients can be cared for and supported in a range of settings, not just at home but at hospices, nursing homes and hospitals, surrounded by highly trained professionals skilled in controlling pain and relieving symptoms.
The charity Help the Hospices says, in practice, choices are limited for many groups. The options available depend to a large extent on what is on offer in your local area and some hospices run waiting lists. Patients from ethnic minority groups or those with specific religious needs may struggle to find somewhere ideally suited to their needs, so too may people with life-limiting conditions other than cancer (see more than cancer below).
The Hospice Information Service (see help and info) provides up-to-date information on hospices and palliative care services for both professionals and the public.
Chris Shaw from Help the Hospices says, 'Potentially there are far more people who could benefit from hospice care than do currently.'
Patients will want to discuss with their doctors and relatives the most appropriate care for them. Check out our feature on caring at the end of life for more information on what to look out for when someone is discharged from hospital.
the hospice movement
Hospices are commonly thought of as somewhere for people with a terminal illness to spend the last weeks of their lives but this definition is only half the story.
The hospice movement is as much about promoting quality of life as it is about ensuring a dignified and comfortable death. In hospices the emphasis is on controlling pain and other symptoms while providing emotional and social support for the patient and their family. All this takes place against a background of social and creative activities.
According to Claire Barracliffe, spokeswoman for St Christopher's Hospice in South East London, the movement takes a holistic approach – 'We look after all their needs, not just the medical ones.' – and the emphasis is on treating each patient as an individual. Staff work in multi-disciplinary teams which include doctors, nurses, physio- and other therapists.
Not everyone needs to move into a hospice to take advantage of the care they offer. Many hospices also provide home care services for people still living in the community or run day care centres that patients can attend when they need to. Some patients come in for a short time to have their symptoms brought under control or to allow their family or carers time off (respite) from round-the-clock care.
Those working in hospices say their approach is more of a philosophy than a type of care. Hospice staff are unlikely to shy away from the most difficult subjects and are as ready to discuss spiritual issues as will-making.
'Patients may want to talk about what has been meaningful in their life or want to draw up short-term goals for the time they have left,' says Ms Barracliffe.
palliative care
The founder of the modern hospice movement Dame Cicely Saunders opened the doors of St Christopher's, the first UK hospice in 1967. Before then people usually died in hospital and little was understood about pain management.
Research started by the St Christopher's team in the 1970s paved the way for the development of palliative care as a discipline in its own right and which is today practiced in hospitals and nursing homes around the country.
Pain and symptom control is essential if patients are to get the most out of the time they have left, says Ms Barracliffe. 'Unless pain is appropriately controlled patients can't think about the wider issues they want to address.'
Hospices offer patients palliative care, an approach which embraces psychosocial, emotional and spiritual issues as well as pain management. Palliative care experts say is not the same as terminal care because it takes as its starting point the quality rather than quantity of life the patient has left. The hospice movement is still at the cutting edge of palliative care and many hospices provide education and training for professionals wherever they work.
hospices today
Over the past 30 years the sector has grown and now provides 3,215 beds. The voluntary sector runs the majority of hospices in the UK (152 units compared to 56 provided by the NHS).
Marie Curie Cancer Care (which runs hospices and a community nursing service for cancer patients) and Macmillan Cancer Relief (which has specialist specialist health and social care professionals) are among the best-known providers of palliative and hospice care.
who pays
For patients, hospice care is free whether it is provided by the NHS or a charity. Chris Shaw of campaigners Help the Hospices, says many voluntary sector hospices are firmly rooted in their local community and the charities that run voluntary sector hospices depend hugely on the goodwill and generosity of local businesses and individuals to fund their work. Voluntary sector hospices for adults receive just 28% of their funding from central government and children's hospices a mere 5%. So the annual round of fetes, car boots sales and coffee mornings is essential.
Help the Hospices aims to put hospice finances on a firmer footing with a campaign to increase the amount hospices are given by central government from 28% to 40 or 50%.
'If the government funded the core service provided by hospices it would free up the charitable funds to be spent on developing innovative services,' says Ms Shaw.
more than cancer
Cancer is probably the best-known potentially life-threatening illnesses – although many people survive cancer, one in four of us will die from the illness. One in three people in the population will be affected by cancer during their lives so almost all of us know someone who has had it.
Hospices have become expert at helping cancer patients cope with the prospect of death and a growing number of medical professionals believe this expertise should be available to patients with other life-limiting conditions such as coronary heart disease. (Many hospices already care for people with conditions such as motor neurone disease.) Palliative care techniques practised in hospices are relevant to people with all kinds of pain, says Ms Barracliffe.
the future
Many studies have suggested that many more patients would like to spend the last days of their life at home if the appropriate care was available. At the moment 24-hour home care provision varies across the country.
In some areas palliative care staff are trying to increase the choices available. In Glasgow, the Hospice at Home pilot scheme provides community-based specialist nurses who work with primary care teams to care for patients with advanced cancer. The rapid response service provided by the Marie Curie Centre, Hunter's Hill together with East Dunbartonshire social work department offers people with advanced cancer a palliative care service in a crisis phase of their illness. The tasks range from offering advice to blood transfusions. The team liaises with patients, hospices and hospital support teams. Hospice at Home can be accessed 24 hours a day, seven days a week for a maximum of five days. Overnight care is provided by Marie Curie nurses to give families respite and reduce the need for admission to hospital.
help and info
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organisations
ACT (Association for Children with Life-threatening or Terminal Conditions and their Families)
Orchard House
Orchard Lane
Bristol BS1 5DT
Helpline: 0845 108 2201 (Mon-Fri 9am-5pm, answerphone at other times)
Website: www.act.org.uk
Works to improve care and services for children in the UK with life-threatening or terminal conditions and their families. Provides information to parents on a wide range of areas helping to address different aspects of the care for their child.
CHAS (Children's Hospice Association Scotland)
42 Craiglockhard Avenue
Edinburgh EH14 1LT
Tel: 0131 444 4001
E-mail: m.rhodes@chars.org.uk
Website: www.chas.org.uk
Scottish charity committed to the provision of children's hospice services in Scotland, working exclusively with children with life-limiting conditions, and their families.
Hospice Information
Hospice House
34-44 Britannia Street
London WC1X 9JG
Helpline: 0870 903 3 903 (Mon-Fri 9am-5pm)
E-mail: info@hospiceinformation.info
Website: www.hospiceinformation.info
Provides information on hospices and palliative care services for both professionals and the public. Website features details of local hospices and palliative care services, and has a range of links.
Macmillian Cancer Relief
89 Albert Embankment
London SE1 7UQ
Macmillan Cancerline: Freephone 0808 808 2020, (Mon – Fri, 9am – 6pm)
Textphone: 0808 808 0121
E-mail: cancerline@macmillan.org.uk
Website: www.macmillan.org.uk
Contact Cancerline free of charge 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.
National Council for Palliative Care
First Floor
34-44 Britannia Street
London WC1X 9JG
Tel: 020 7520 8299 (Mon-Fri 9am-5pm)
Website: www.ncpc.org.uk
The umbrella and representative body for palliative care in England, Wales and Northern Ireland.
St Christopher's Hospice
51-59 Lawrie Park Road
Sydenham
London SE26 6DZ
Enquiries: 020 8768 4500
E-mail: info@stchristophers.org.uk
Website: www.stchristophers.org.uk
Cares for people with cancer and some other serious illnesses, helping them and their families to cope at this difficult time. Offers bereavement counselling and advice. Runs the St Christopher's Candle Project, which provides bereavement counselling for children, young people and their families in the south east London area.
websites
The Association of Children's Hospices
www.childhospice.org.uk
Brings together over 40 voluntary sector organisations in Great Britain dedicated to the care of terminally ill children. Their website is intended to be an initial point of contact for people seeking further information about children's hospices.
The Association for Palliative Medicine of Great Britain and Ireland (APM)
www.palliative-medicine.org
An association of doctors who work in hospices and specialist palliative care units in hospitals. Formed in 1986, it now has approximately 760 members from all over the UK and Ireland, and includes doctors based overseas.
Help the Hospices
www.helpthehospices.org.uk
The national charity for the hospice movement providing support to hospices across the UK.
Hospice Net: For patients and families facing life-threatening illness
www.hospicenet.org
American-based website which provides information and support to patients and families facing life-threatening illnesses. Range of resources for patients and carers on palliative care and bereavement. Has a directory of local hospices, including a UK directory.
National Association of Hospice Fundraisers
www.nahf.org.uk
The National Association of Hospice Fundraisers is the UK professional association for fundraisers working in the hospice movement.
reading
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ABC of Palliative Care by Bill O'Neill |
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The Handbook of Palliative Care by Yvonne Carter, Christina Faull and Richard Woof |
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Palliative Care by Christina Faull and Richard Woof |
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Palliative Care for People with Cancer by Jenny Penson and Ronald Fisher (editors) |
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The Dying Soul: Spiritual Care at the End of Life by Mark Cobb |
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Family Handbook of Hospice Care by Fairview Health Services |
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Hospice and Palliative Care by Virginia Sendor and Patrice O'Connor |
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(June 2002, resources updated February 2005)
