Living with Dying

Care at home for people with a terminal illness: nursing

People usually want to stay in their own home as long as possible. This can often be arranged with the help of social services and with care from family, friends, GP, district nurse, and community-based palliative care services. Community nursing and palliative care are usually arranged through the GP, either directly, or after discussion with social services (see 'Care at home: Social Services'). Macmillan Cancer Support funds Macmillan nurses for people with cancer and Marie Curie Cancer Care can provide 24 hour nursing care for people with cancer and other life-limiting illnesses at the end of life. Most hospices focus on keeping people at home, and may provide short-term intensive home support.

Almost everyone made positive comments about the medical care and support provided by nurses in the community. For example, a woman who had bowel cancer described the district nurses as 'absolute angels'. After she had left hospital a district nurse came daily to do her dressings.

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A man, also with bowel cancer, mentioned that the district nurse called the day he arrived home from hospital. She was able to reassure him and help him with his colostomy. Another man, who had oesophageal cancer, described the district nurse as 'very supportive'. She found him an inflatable mattress to prevent bedsores.

At first, some people hesitated to invite a hospice nurse, palliative care nurse, Macmillan or Marie Curie nurse into their homes because they associated palliative care and hospice care with death and dying. However, people were always pleasantly surprised by the kindness, help and advice offered by these nurses, and learnt that the role of the palliative care nurse covers more than death and dying.

Hospice nurses, palliative care nurses, Macmillan nurses and Marie Curie nurses seemed to be available at any time. One nurse told a man with cancer of the pancreas that if he needed her she would come straight away.

A woman, who had lung cancer, had a fall in the street. Neighbours took her home, where she rang the Iain Renee nursing team at the local hospice. They contacted her nurse, who came at once. Even though she was seriously ill and lived alone, she felt secure because someone was always available who could help her.

A woman who had leukaemia was very glad to have the support of a hospice nurse, who often visited her at home. The nurse could be reached on her mobile phone and could help at any time. The woman said that the nurse made 'wise' comments, such as 'take one day at a time', and passed on useful information. For example, she told her about two firms that could deliver frozen food and hot lunches. She also explained that the local pharmacy would deliver prescriptions.

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Macmillan nurses were particularly appreciated because, unlike some other carers visiting people at home, they are willing to help with whatever aspect of practical or emotional support the person needs.

One woman, who had breast cancer, explained that her Macmillan nurse was extremely practical, a 'go-between' who managed to 'get things done'. The nurse helped to fill in forms and obtained useful aids for her husband, who was also ill. For example, she found a commode, and a bathroom stool and walking aids.

A woman with kidney cancer also found the Macmillan nurses 'extremely nice and helpful'. One nurse drew little diagrams to explain the aneurysm in her neck. This woman didn't want the palliative nurses to call on her regularly while she felt reasonably well, partly because she knew that they were busy with other people, and partly because she wanted to think of herself as much as possible as a 'fit' person. However, she was glad that the nurses were there if she needed them.

Palliative care nurses give emotional support as well as physical care. A woman with breast cancer was glad that she could vent her feelings when the Macmillan nurse called to see her. The nurse was sympathetic and supported the whole family in many ways.

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Another woman, who had ovarian cancer, said the Macmillan service was 'absolutely brilliant'. She was particularly grateful to one nurse, who helped her find the right words to talk to her mother about her cancer.

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For more information see resources.

Last reviewed July 2017.

Last update August 2014.


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