Support and counselling
Support and companionship are hugely important to those with terminal illness. We heard that family, friends, doctors, nurses, Macmillan nurses, social workers, and others often...
Where people want to die
People often say that they would like to die at home, as long as they are not a burden on the family.
‘70% of people would prefer to die at home’ – Dying Matters March 2017.
However, the possibility of a home death depends on various factors, such as the progression of the illness, the need for symptom control, whether there are complications, the family support available, access to community based palliative care services, and whether necessary equipment and other services are available.
He would prefer to die at home but wouldn’t like to be a burden on the family and would consider…
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.
She decided to stay at home as long as possible.
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.
She would not want to be a burden on the family if she were desperately ill.
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.
He wants to die at home because it will be easier for family and friends to visit.
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.
He wants to die at home in the peace and comfort of his own surroundings.
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 study in 2004 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 (see ‘Place of death: preferences among cancer patients and their carers‘).
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.
She would prefer to die in the hospice, where she had experienced good care, love, and laughter.
She would prefer to die in a hospice for a number of reasons.
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.
A large percentage of people in the UK still die in hospital 47%, 23% of people die at home. Only 6% of people die in a hospice (The National End of Life Care Intelligence Network – Variations in Place of Death in England December 2016).
It is now NHS policy that everyone with a life-threatening illness should have access to appropriate palliative care services, the current government strategy is to support more people dying at home.
For information on Advanced Decisions, Advanced Statements and Advanced Care Planning see ‘Information – Advance Decision and advance statements‘
Message to health, social care workers and government
Many people were grateful for the care they had received during their illness and wished to pass on their thanks to all those who had...