Our glossary is aimed at helping to demystify medical jargon.
Hospices traditionally provide care for those with cancer. However, some hospices are now providing end-of-life care for those suffering from other forms of terminal illness.
Hospice care seeks to improve the lives of people living with a progressive and life-threatening condition. By offering high-quality, specialist palliative care it helps them to live as actively as they can to the end of their lives, however long that may be. It not only takes care of people’s physical needs but looks after their emotional, spiritual and social needs as well.
Hospices provide care in a number of different places including people’s own homes, day care and inpatient units. They will often also provide support in local care homes and other community settings. People can use hospice care at any stage of their illness, not just at the very end of their life. There are hospices for adults, and for children and young people.
Hospice care also supports carers, family members and close friends, both during a person’s illness and during bereavement.
Residential, community-based provision in the statutory, voluntary and independent sectors where a number of elderly people live with access to on-site care. This may be personal care only (help with washing, dressing etc) or nursing care, which offers the same personal care but also the provides on-site medical care. Some homes are registered for a specific care need, for example dementia or terminal illness.
Anyone who voluntarily provides care to another person who would not be able to manage without them. Carers can be any age.
Capacity: the ability to make a decision about a particular issue at the time the decision needs to be made or to give consent to a particular act. It is important to appreciate that only people who have capacity can participate in advance care planning.
DNACPR: abbreviation of ‘Do Not Attempt Cardiopulmonary Resuscitation’.
DNAR: Do Not Attempt Resuscitation, an abbreviation of DNACPR.
Palliative care: care which focuses on relieving or soothing the symptoms of a serious illness, usually one that is not curable. Find out more about palliative care.
Terminal illness: best defined as an illness that is likely to result in a life expectancy of six months or less. Once confirmed, a GP can sign a ‘DS 1500’ form for accelerate care benefits for the patient. The GP, district nurse or cancer care nurse will usually make sure this is done in good time.
Chronic illness: a persistent or recurring illness which often results in disability and may shorten life expectancy.
Prognosis: the length of time a patient may have left to live. Sometimes referred to as a ‘five-year survival rate’, this indicates the statistical chance of the patient dying in the next five years (of anything). No one has an 100% survival expectancy. Life has its dangers.But someone with a terminal illness would have a low five-year life expectancy.
End of life care: End of life care has been defined by the National Council for Palliative Care, the lead charity for Dying Matters, as ‘care that helps all those with advanced, progressive, incurable illness to live as well as possible until they die. It enables the supportive and palliative care needs of both patients and family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support.’
End stage: The final phase in the course of a progressive disease leading to a patient’s death.
A statement of a patient’s wish to refuse a particular type of medical treatment or care if they become unable to make or communicate decisions for themselves. It is called an advance decision in England and Wales, and an advance directive in Scotland. For an Advance Directive to be legal, the person who has made it must be over 18 years old (16 in Scotland) and the document must be signed, witnessed and dated while they are mentally capable.
Hospices and care homes usually instigate an Advance Care Plan when a patient or resident is first admitted. If so, it is advisable to give a copy to your GP or your solicitor, as well as to any next-of-kin who need to know your wishes should an emergency arise.
These include cardio-pulmonary resuscitation (heart and lung), artificial feeding and hydration (sometimes called clinically assisted nutrition and hydration) (administered by a tube which enters the body), ventilation (breathing by a machine) and intravenous medicine (by drip or injection).
This includes nursing care, pain relief and relief of other symptoms, and the offer of food or drink by mouth (perhaps with a spoon, straw or cup).This kind of care may also be referred to as comfort care. The code of practice produced by the British Medical Association states that patients can refuse life-sustaining medical treatment, but they cannot refuse basic care.
The giving of food in a way which does not require ‘eating’ in the normal way by mouth. It involves the delivery of food to the person’s body by a tube or by a drip into the bloodstream. The National Council for Palliative Care have published guidance on this issue. See shop.ncpc.org.uk
Consent and capacity
Consent must be sought for all medical treatments. Giving (or refusing) consent is the means by which people can choose to accept (or refuse) medical treatments. To give valid consent people need to be able to access and understand appropriate information relating to the decision they need to make.
It is assumed that adults have the ability (capacity) to make decisions unless this can be proved otherwise. If a person is shown to lack capacity, treatment may be provided to them where doctors think it is in that person’s best interests.
Clinical staff must take all possible steps to maximise the decision making capacity of individuals. This should include providing simple information in a language that people can understand, or in some audiovisual format if that is more appropriate.
Health professionals also need to recognise that a person’s capacity will vary. Decisions with serious consequences require a greater degree of capacity than simpler decisions. The Code of Conduct for the Mental Capacity Act is a comprehensive source of further information about these issues.
Withdrawing and withholding life-sustaining medical treatment
Currently in the UK it is recognised that where death is inevitable life-sustaining treatments such as resuscitation, artificial ventilation, dialysis or artificial feeding may be withdrawn or withheld. In such cases the goal of medicine becomes the relief of symptoms. ‘Basic care’ and comfort must be provided and can never be withheld.
Any health professional, for example, a nurse, involved in clinical practice.
General Practitioner (GP)
Your GP is the first port of call when your health is failing or causing concern. He or she will arrange for relevant tests through the NHS and refer you onto a medical consultant when necessary.
If you are a private patient, it is possible to have private treatment from a specialist without being referred by a GP. However, the British Medical Association (BMA) believes that, in most cases, it’s best practice for patients to be referred for specialist treatment by their GP.
A doctor who specialises in diagnosis and treatment of cancer. Most NHS hospitals have an Oncology unit, and a team of oncology nurses.
Palliative Care Consultant
A doctor who leads a specialist team in the provision and management of all patients with chronic and terminal illness. They are employed by the NHS and also work in hospices.
Macmillan nurses are clinical nurse specialists in cancer and palliative care. They work in hospitals and in the community, but not usually within the private health care sector. To obtain the services of a Macmillan nurse or palliative care clinical nurse specialist, you must be referred by your GP, your hospital consultant, a district nurse or a hospital ward sister.
Marie Curie Nurses: These are specialist nurses funded by the Marie Curie Cancer Care Charity. Their services are free to patients, and their families, who are cared for by Marie Curie Hospices found throughout the UK.
This content has been funded by Macmillan Cancer Support. It was commissioned as part of Find Me Help, Dying Matters' new online search tool which gives access to a comprehensive database of national and local organisations providing support and advice for people coping with death, dying and bereavement.