Dying well at home: the case for integrated working

Meeting carers' needs

The needs and experiences of carers supporting a person to die at home

The main message is we all want the best for our loved one.

Bereaved carer, SCIE workshop [16]

It felt like I was on a treadmill and I had to find out everything as I went along.

Carer [1]

Key points from research and policy

Family carers

• The term ‘family carer’ is used to mean a person or people identified by the person dying (where possible) as important to them, and is intended to cover a spouse, partner, child, other relative, friend or supporter who cares for, and cares about, the person who is dying.
• Having a live-in carer to assist the person dying is probably the most important factor in enabling a person to die at home if they wish [4, 5].
• Around 500,000 carers provide support to people dying at home of a terminal illness [28]. It is estimated that the total value of support provided to frail and disabled people by family carers was worth £71 billion in 2007 to the health and social care economy (Carers UK, quoted in [3]).
• Carers act as advocates for the dying person, and they are often the most informative source for research and evaluation of end of life care services.

Practical support needs

• Carers of people dying at home have a range of practical support needs:
  • Information – How best to care for the dying person (diet, hydration, feeding, swallowing; incontinence care; access to specialist services or equipment; general patient comfort, including positioning and lifting, medication and symptom management). Carers say that the professionals who come into the home should work more closely with them, and offer on the job training including written material where available. Professionals are often too occupied with completing nursing tasks to offer advice, although they must be aware that the family carer has to provide most basic nursing care [29, 30].
  • Help to access equipment and navigate and engage with the complexities of health and social care services – A designated person with influence in the system is considered valuable: ‘Having one named person who will “walk the walk” with you’ [16].
  • Financial and benefits advice for both themselves and the person cared for – This is clearly crucial, as carers may give up their entire income in order to care. Households may be in serious financial difficulty [1, 16].
• Family carers need health and social care professionals to communicate well with them. They need:
  • acceptance by health and social care professionals that they are crucial members of the care team, and should be consulted and informed about all aspects of the dying person’s welfare
  • to know about how the person’s illness will progress, what to expect and how to recognise and respond to change and deterioration.
• Carers also identify shortcomings of services for end of life care in the community [16]:
  • There is a lack of continuity of staff, especially those of social care domiciliary agencies.
  • GPs and other healthcare staff may refuse to communicate on the grounds of ‘patient confidentiality’, which is unacceptable except where a patient has requested it. If the patient lacks capacity to endorse the carer’s request for information, it is clearly in the best interests (Mental Capacity Act 2005) of the person for health staff to communicate with the family carer.
  • Carers often said that they had to coordinate the input of health and social care professionals, as the services were not integrated and did not liaise with each other.

Psychological needs

• Carers also identify a range of psychological difficulties (including depression and anxiety, feelings of powerlessness and helplessness, low caregiver esteem), physical and emotional stress, and psychosocial difficulties [16, 31]. Intense, negative, conflicting and difficult emotions (fear, guilt, hopelessness, etc.) combined with feelings of inadequacy, insufficiency and uncertainty about their abilities, can accelerate stress and burnout [32]. Carers are also often extremely socially isolated, and may have little opportunity to engage with ‘normal’ life.
• Many carers are themselves elderly and frail and the caring role is often associated with sleep disturbance and fatigue. Physical frailty can lead to the breakdown of ability to care.
• Carers should be assessed for social care support, at the very least for respite and help with household tasks.
• Research suggests that caregivers are ambivalent about expressing their own needs, against a background of lack of information about rights, lack of time and discomfort in confiding in strangers [32].
• Caregiving may be perceived as a loving or conscious choice, or as an obligation.
• A number of factors can help caregivers:
  • Commitment to the dying person, and satisfaction with one’s caring, can provide greater resilience to stress and burnout: professionals can encourage family carers to recognise their own expertise and ability and confirm that they are doing a good job in difficult circumstances.
  • Trusting relationships, support networks and the sharing of tasks and concerns contribute to security, reassurance, comfort and manageability, and mitigate anxiety, stress, uncertainty and feelings of abandonment [16, 32].
• There is research on psychosocial and support interventions for carers [33]; but this showed that finding time for attendance at group or one-to-one sessions – or even for telephone support – was problematic for carers. The focus of carer interventions is repair (when carers cannot cope), reacting to crises, rather than proactively trying to avoid crises [28]. Early and timely advice and support could prevent hospital admission: ‘A little low-level timely advice and support could avert a crisis. You’re only allowed paid help if you have substantial needs – so there is no prevention’ (carer [16]).

Assessment

• Carers are entitled to an assessment of their needs. It is not clear how commonly this is offered or whether it results in a support plan [28].
• Carers have suggested that ‘what helps’ them is primarily being part of a good care team, ensuring that the person cared for has the best possible support. Research suggests that good ‘quality of death’, and the satisfaction of knowing they fulfilled the person’s wish to die at home, may help family carers to cope with the loss of a loved one [31].
• Other factors that have helped carers are:
  • trusting relationships and honest communication with providers, who listen to and support them
  • befriending schemes, and support from friends and neighbours: people who spend time with them and the dying person, and reduce their sense of isolation
  • having a personal budget so that the carer can engage someone who they can train and supervise. This option is not well publicised.
• Our exploration of research was unable to consider post-bereavement support for carers. This may be valuable: it may only be after the death of a loved one that carers can afford to admit the impact on themselves. After a long period of caring, people may be extremely isolated; even the visits of health and social care staff will cease [1]. The impact of caring for a dying loved one is complex and long term.