Caring for someone with a terminal illness

Thoughts about the place of death

Research shows that most people would like to die at home if they had a terminal illness, with a sizeable minority opting for hospice care. However, more than half of deaths still occur in hospital, the place people say they would least like to be. People in modern society are less familiar with death and dying than in the past and it is widely considered to be a taboo subject. Health professionals may have therefore found it difficult to initiate discussions with dying people and their families about the end of life.
 
Nowadays more professionals are giving patients the opportunity to take part in Advance Care Planning - a voluntary process of discussion and review to help an individual, who has capacity, to anticipate how their condition may affect them in future and, if they wish, to set on record, choices about their care and treatment (see Planning for deterioration and death). As part of this process, terminally ill people and their carers should be asked about preferred place of death. This can be a very personal decision which will impact on the memories of the event for those left behind. Death doesn’t always occur in the preferred or expected location because, for instance, it may happen sooner than expected, there are no beds available in a hospice, or the patient has medical needs that can only be met in hospital.
Many carers we spoke to said that the person they were caring for had achieved their wish to die at home. Cassie and her dad never considered hospice care; they always expected that he would die at home. Just before Roger (Interview 32)’s wife died a community nurse checked with him that he wanted Luise to stay at home and not have hospital care. Simon’s wife was adamant that she did not want to go to hospital or to a hospice but wanted to stay at home no matter what happened.

Although caring for her at home was hard on the family, Simon would never wish to change it as it seemed natural to have her at home. He had been scared of death himself and realised how much more frightening Karen’s death would be for their 4 year old daughter, particularly if she was excluded from it. He felt the more his daughter knew, the more she would be able to understand and cope, so it was a great comfort to him and Karen that they were able to arrange for Karen to die at home with him and the children there. Dick’s wife went to a hospice one day a week and also had two, weeklong stays there; she was uncomfortable most of the time and Dick feels it was better that she was at home to die.
 
A home death can allow family and friends to spend more time with the body after death than might happen in a hospital. If a patient dies at home during the night there is no need to notify a doctor until the morning.
 
Although a patient may be receiving care in a hospital or hospice, it is possible to press medical staff to allow the patient to go home to die with support from community health and/or social care professionals. Some patients left the hospital or hospice so they could be at home. Keith felt daunted by the prospect of caring for his wife when her condition deteriorated, but she seemed to feel uplifted as soon as she came home and Keith is sure it made a difference to her; knowing that he enabled her to die at home is a great comfort to him now. Poppy felt that hospital was not the place for her dad to die, so she took him to stay with her in a friend’s cottage. He had a room overlooking the garden; he called it his ‘paradise before paradise’. Sarah’s mum had always put her ‘best face forward’ for the doctors, nurses and visitors in hospital, so when she came home she was able to let go and be herself.
Some people we spoke to had expected their friend or relative to die at home but in the event this wasn’t an option. Sue’s father was moved into residential care when his needs couldn’t be met at home. She feels that the care home had been the best place for her father to die although her mother may have expected him to die at home. Sue thinks it might have been difficult for her mother to continue living in the house and for the family to visit if he had died there. Although David’s father would have liked to die at home, he died in a palliative care unit at the hospital. David feels it was probably the best place for the care he needed at the end, and like Sue, he feels it is probably easier for his mother to continue living in the home.
 
Some patients decided that they did not want to die at home. Lynne had thought about possible home care for her mother, but her mother did not want to be at home because she knew the family would have to live in the house after her death.
Earlier in Jane’s husband’s illness she had been adamant that he would die at home, but as his condition deteriorated she struggled to juggle ‘the needs of three children and a dying husband’. After a very difficult week the doctor suggested George should be admitted to hospital. Jane resisted that and arranged for him to go into a hospice instead. In hindsight she feels the hospice had been the right decision as his condition had been well controlled and it gave them more time together. David and Fiona always planned for her to go to a hospice once her condition worsened. Fiona had been in hospital a couple of times and it was becoming difficult to manage her care at home, so they decided that it was time for her to go to the hospice. On reflection David feels this had been absolutely the right decision.
Jacqui always thought that her husband would die at home as he didn’t like hospitals. However the decision was ‘taken out of her hands’ when he was admitted to hospital where he died. Julie’s partner died in a hospice. Julie would not have taken him to the hospice if she had known he was about to die, because he wanted to die at home. John (Interview 10) would have liked his wife to be nursed at home but it was not until the night before she died in hospital that he was told that her death was imminent. Although she had good care, John feels that with better preparation she could have been transferred to a hospice. Val wanted her husband to die peacefully at home and had obtained all the necessary equipment, but unfortunately he died on a busy ward in hospital on the day he was due to come home (see The death itself).


Last reviewed July 2014.

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