Caring for someone with a terminal illness

The death itself

For many carers watching the decline of a friend or relative with a terminal illness can be difficult. When Theadora's mother said, ‘I don’t really want to do this anymore. I’ve had enough’, Theadora and her father were able to let her mother know she didn’t have to. A family friend told Sarah’s mother that the family were all alright and that she could go.
There are often several options that patients and carers can consider when looking at the final few days or weeks of life. Many patients would like to die at home and professional support in the community is available to those who choose to do so (see Thoughts about the place of death). Henry’s partner Jane was supported by community nurses and able to die at home with her family around her.
Sometimes, although there were plans for a patient to die at home, the patient died in hospital or in a hospice (see Thoughts about the place of death). Carers sometimes stayed in the hospital or hospice to be near to patients when they were thought to be near to death. Maggie brought a yoga mat and blankets from home so she could sleep near to her husband at the hospital, and Mary requested a bed in her husband’s hospital room and was given a mattress.
 
The experience of the death in hospital was not always positive.
Many chose hospice care. David (Interview 35)’s wife Fiona was able to stay in a family room in the hospice and he stayed with her every night bar one. Their two sons were also able to stay on occasion. Fiona was much more relaxed at the hospice and David found it was less stressful than providing home care as he no longer had to worry about looking after Fiona and could just spend time with her.
 
Many do not know what to expect when someone dies and Mary was grateful to a nurse who explained exactly how her husband’s death would be. There are changes that occur in the last few days or hours of life that carers may notice. The dying person may feel weaker and sleep more. Some suffer from restlessness or confusion, which can be alleviated with medicines. As death approaches, the person’s mouth may become dry, their skin may feel cold and moist and change colour, and their breathing may become irregular and noisy. Most people gradually slip into unconsciousness but can still hear and are aware of people present. Their breathing will become increasingly irregular before stopping altogether. Memories of the actual moment of death may stay with carers for a long time, particularly if it was not as they had hoped. Where the death had been peaceful, carers told us that the person had just fallen asleep or taken a large breath that had not come out again. Simon said that his wife had opened her eyes just before the moment of death.
 
Carers often find comfort in the fact that they were able to be with the patient when they died, although for some it was the first time they had ever seen a dead body. For Mary (Interview 11) and Roger (Interview 32) it was important that Last Rites were administered. For some carers the act of laying out the body is the final act of caring they can perform. Dick kept his wife’s body at their home for 24 hours as she had requested and during this time a group of friends came over and together they washed and dressed her. The ritual of laying her out helped Dick say goodbye, although he found it difficult to share this time with others. Fiona was able to help take care of her mum after she died, laying her out and getting everything ready for her to go. Fiona feels she had time to say goodbye to her mother and this is a great comfort to her. Mary believed that quality of death is just as important as quality of life and it was important to her to get her husband’s death right. She found being with him when he died an ‘awe inspiring’ and life changing experience.
There is a fine balance to be achieved between controlling symptoms and over sedating a dying person who wishes to remain alert, and this can be challenging for professionals. Most people said that professional care had been good wherever the death took place, although some mentioned occasions when pain relief had been inadequate. Unfortunately this could make the experience of death very traumatic for the carer. John (Interview 12) found that although his son Tim was in hospital, there was a delay in giving him sufficient morphine and Tim became very distressed before he died, which John still finds very distressing.
Perhaps the situation Susan described could be avoided if carers had clarification in advance from their community health professionals about how morphine would be supplied, particularly if it was needed out of normal working hours.
 
Watching a patient suffer in the terminal stages of their disease made several carers wonder whether assisted dying would have been appropriate in their case (see Planning for deterioration and death). Some patients choose not to have any interventions to prolong their life and record this in an ‘advance statement’ or ‘advance decision’ document often called a ‘living will’. Emma’s mother used the ‘message in a bottle’ scheme to alert professionals to her ‘do not resuscitate’ request (see Planning for deterioration and death).
Not knowing how long a patient has before death can make it difficult for family and carers to plan. Heather wasn’t aware that her husband was near to death when he was admitted to a nursing home. He died two weeks later and Heather wishes she had kept him at home. No-one, not even experienced health professionals, can predict exactly when a patient will die, but carers can ask the professionals how long they think the patient has left. Some carers were advised by professionals that the death was imminent whereas the patient lived on for a further period of days or weeks.
For the same reason several carers missed the actual death. On the day that Janet’s partner Chris died, Janet had stayed with her at the hospice until she fell asleep and then went out with friends that evening because the staff believed that Chris still had several days left. While she was out she received a phone call to say that Chris had died. Lynne had driven home to sleep after visiting her mother in the hospice. The nurses said they would call if her mother’s condition deteriorated and Lynne had just gone to bed when she received a call to say her mum had died. Cassie was in bed in another room when her mum called her to say her dad had died. When a patient dies during the night, sometimes the carer is asleep. Although Sue missed her father’s death, she and her mum sat with his body for two hours. Simon had been in the kitchen when a nurse who was attending to his wife in the living room came to say that she had just died.


Last reviewed July 2014.

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