Caring for someone with a terminal illness

Care in hospitals, hospices and care homes


Hospital care
 
Following a diagnosis of terminal illness many people found that they had most of their care in the community rather than in hospital. Some people talked about attending hospital for palliative treatment for cancer or to discuss their condition with specialists. Whilst some found it helpful to still see their consultant, others felt it was no longer useful or relevant.
People said that the care their friend or relative had received in hospital had varied. While they were full of praise for some hospital staff, care and sensitivity had been lacking from others at times. Brian said, “I can’t fault the people we’re dealing with at the moment”. Maggie said, “Sometimes some of the nurses were lovely”. Janet said that her partner Chris had greatly respected one of her oncologists but not another. John (Interview 12) said that “Most of the nurses showed care and concern” for him and his wife as carers. Georgina said, “Some of the registrars and sort of various under doctors, they were lovely people; they did care when they spoke to me, they were just difficult to get hold of”, and that one of the nurses had been “hard working, kind, [had a] sense of humour and treated my mother with respect and dignity”.
 
Sometimes carers felt that the type of care being offered in hospital was inappropriate because it was focussed on prolonging life rather than understanding terminal illness and people’s wishes to let death take its natural course. 
Sometimes people with a terminal illness were admitted as an emergency or attended hospital for treatment to alleviate worsening symptoms. Carers often felt heightened levels of concern and anxiety in emergency situations because they are aware of the possibility that their friend or relative may die during this time. When a patient is near to death health care professionals should follow an end of life care plan; a set of guidelines for best practice. 

In the past the Liverpool Care Pathway (LCP) was recommended as a model of best practice by the Department of Health and was used in many UK hospitals and other healthcare settings. The LCP was developed during the late 1990s at the Royal Liverpool University Hospital with the Marie Curie Palliative Care Institute. It was intended to provide the best quality of care possible for dying patients in the last hours and days of life, whether they were in hospital, at home, in a care home or in a hospice. Following concerns about the use of the LCP, particularly from families, the Minister for Care and Support commissioned an independent review (More Care, Less Pathway July 2013). The review panel found evidence of both good and poor care delivered through use of the LCP and concluded that in some cases, the LCP had come to be regarded as a generic protocol and used as a tick box exercise. The report made 44 recommendations. One of the key recommendations was that the LCP should be phased out over the next 6-12 months (by July 2014). This recommendation was accepted by the Minister for Care and Support. Use of the LCP was not mandatory and not all organisations that cared for dying people used it. However its use was widespread and there was considerable concern that it needed to be replaced by something else.*
 
Emergency admissions had often been quite traumatic, with people encountering long waiting times, poor communication, poor treatment and personal care. People sometimes found staff seemed rude and abrupt in acute wards because they were busy and short staffed. This abrupt approach often clashed with the sensitivity that people expected from end of life care, and they felt annoyed that they had not received the level of care, or the approach to care, that was needed. Some people opted to take on the personal care needs of their relative but this was not always welcomed by the hospital staff (see Other caring roles).
Keeping their relative comfortable and pain free was vital and some carers said they had to be quite forceful when requesting that personal care needs were dealt with and that the appropriate pain relief was given. Saba found it difficult to get appropriate pain relief for her mother in hospital; sometimes they would give her too much morphine, which would knock her out against her wishes, and at other times when her mum needed pain relief the staff were slow to respond.
Maintaining a good diet was also quite challenging in the hospital and many felt their relative had lost weight because no one noticed or asked why they were not eating. Some carers took food in from home.
While some hospital staff were very good and recognised the needs of people with terminal illness, and had gone out of their way to accommodate relatives and friends, other people felt that there was a poor understanding of terminal illness. Hospital visiting policies were sometimes seen as inflexible although some carers had been able to arrange visits out of normal hours, particularly at the end of life.
Some felt that their relative’s treatment was compromised because it did not fit in with normal ward protocols, or because of poor communication at shift changes.
Hospice care
Some patients went into a hospice to provide respite for the carer. Patients might stay in a hospice for a period of days or weeks or just attend the hospice day centre. Some people made the decision to move into a hospice indefinitely. To many carers this came as a relief and some people described how this gave them the chance to re-kindle their previous role in the relationship rather than just be their carer.
Hospices were generally held in high regard by the people we interviewed. They found that the care provided in hospices was focused on making the patient comfortable and understanding their specific needs. Carers were impressed by the attentiveness of staff, the homely, relaxed atmosphere and the activities and alternative therapies that were available. Saba was particularly impressed with how understanding the hospice staff were about her mother’s need for cleanliness because of her Muslim beliefs.
Although many carers found the hospice visits useful for getting temporary respite from their caring responsibilities, a few found that it had not always suited their sick friend or relative. Some felt that the sick person was more comfortable at home or found that the travelling to the hospice was more trouble than it was worth. Roger (Interview 32) said that when his wife Luise lost her voice she did not like being in the hospice because she was unable to communicate properly, so she stopped attending. They also worried that the hospice did not keep her as mobile as she was at home.
Care homes
Choosing to move a relative to a care home or nursing home was a difficult decision which people struggled to make and sometimes found difficult to discuss with their relative. Using short respite visits sometimes helped people get used to the idea. Carers were adamant that moving their relative into a care home should not be something that was forced on them or used as an alternative to setting up a care at home package. Anne and her husband Jim decided together that he would be better off in a care home.
In the UK, although local authorities do provide some care homes, many are owned or managed by independent organisations. Carers are often very aware that the quality of care homes and the level of fees vary widely. This sometimes causes concern when choosing a care home for their friend or relative. Tricia visited various care homes which she described as “awful places that smelt of urine” before she found one that she felt was good enough for her mother to go to.

*The Leadership Alliance for the care of Dying People (made up of 21 national organisations) was formed so it could respond to the recommendations set out in the independent review of the Liverpool Care Pathway. To improve services it published ‘One Chance to Get it Right: how health and care organisations should care for people in the last days of their life’ June 2014. It sets out the approach that should be taken in caring for all dying people in England, focusing on achieving five priorities for care.
“The Priorities for Care are that, when it is thought that a person may die within the next few days or hours 
1. This possibility is recognised and communicated clearly, decisions made and actions taken in accordance with the person’s needs and wishes, and these are regularly reviewed and decisions revised accordingly. 
2. Sensitive communication takes place between staff and the dying person, and those identified as important to them. 
3. The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants. 
4. The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible. 
5. An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, co-ordinated and delivered with compassion.”

All of the interviews currently on this site were collected before ‘One Chance to Get it Right’ (see our resources for a link to this) was introduced.

Last reviewed September 2014
Last updated September 2014

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