People often say that they would like to die at home, as long as they are not a burden on the family. However, the possibility of a home death depends on various factors, such as the progression of the illness, the family support available, access to community based palliative care services, and whether necessary equipment and other services are available.
People recognised that circumstances might change. One woman, for example, had decided to stay at home as long as possible, but knew that her mental or physical state might change, making it impossible for her to stay at home until she died.
A man with testicular cancer and kidney failure wanted to die at home with his things around him, but he anticipated a 'messy' death, which might need intervention. Like many other people we talked to he didn't want to inconvenience those he loved.
Others worried about possible strain on the family. A woman with bowel cancer feared she would lack of control over her 'bodily functions'. Even though she would like to stay at home as long as possible, she was quite prepared to go into a hospice.
Many other factors influenced people's thoughts about place of death. A young man with a brain tumour favoured a home death because he wanted to have friends and family around him. He thought that in hospital visiting times might be restricted, and parking would be easier in front of his own house.
Home was not always ideal. One woman said that her husband was not very practical when it came to looking after an ill person and some people had thought about moving to a more convenient location, or to a house with a bathroom next to the bedroom. A woman with breast cancer liked the idea of building an extension on her daughter's house.
Other people too, wanted to die in the comfort of their own homes, in familiar surroundings. A man with prostate cancer worried about pain, but had been told that pain could be controlled even if he decided to stay at home.
Another man who favoured a home death said that he didn't want to be 'messed around with', implying that that he didn't want to go into hospital to have any more medical interventions.
No-one we talked to said that they wanted to die in a hospital - one man said that 'hospitals are for the sick, not the dying' and another said they were too sprawling and impersonal. A woman with motor neurone disease wanted to stay at home as long as possible but was adamant that she would not consider going into a hospital or nursing home because in her experience they were short staffed and provided poor care.
The daughter of a man with motor neurone disease said that her father found the hospital very noisy. He hoped to move to a hospice, but no hospice beds were available.
An elderly man with multiple sclerosis was adamant that he would only stay at home if his wife remained well and if she accepted help. He was quite prepared to go into a nursing home if necessary. A woman in her early sixties, with breast cancer, did not want to go into a nursing home where everyone would be much older.
Those who have had the chance to become familiar with a hospice often feel that they would be content to end their days there. A recent study of 41 terminally ill cancer patients and their carers in north-west England found that they were overwhelmingly in favour of either a home or a hospice death.
One woman, who had been admitted to a hospice for a period of symptom control, said that the hospice gave excellent care and was full of love and laughter. A woman with breast cancer said she would prefer to die in a hospice because she worried about pain, didn't want to be a burden on the family, and didn't want her family to think of death when they visited the family home, a place they had all loved.
Some people we talked to hadn't decided where they would like to die, or discussed it with their partners. A woman with ovarian cancer was pleased that her Macmillan nurse had raised the subject, but said that it was a very sensitive topic and needed to be approached carefully.
Since these interviews a number of new strategies and planning tools have been written which are aimed at improving the quality of care for adults at the end of life and to help give more choice about where they would like to live and die:
In July 2008 the Government published the End of Life Care Strategy - promoting high quality care for all adults at the end of life. Its aim is to provide people approaching the end of life with more choice about where they would like to live and die.
The Gold Standards Framework - is one tool used to improve collaboration among care homes, GPs, primary care teams and specialist palliative care teams, and to reduce the number of admissions to hospital in the last days of life.
Liverpool Care Pathway - is a tool that promotes structured decision making and review of a patient’s care in the last days of life.
National End of Life Care Programme - aims to support the implementation of the Department of Health's End of Life Care Strategy for England by sharing good practice in collaboration with local and national stakeholders.
Preferred priorities for Care - This patient held document was designed to facilitate patient choice in relation to end of life issues. Through good communication and by documenting patient and carers choices, they become empowered through the sharing of this information with all professionals involved in their care.
Living wills: advance decision or directive - An advance decision (also called advance directive) can be used to indicate the persons wish to refuse all or some forms of medical treatment if there is a risk of losing mental capacity in the future. It can’t be used to request treatment.
Last reviewed July 2010.
Last updated July 2010.
