Home adaptations, equipment supply and transport
Caring for a person at home until their death can require the use of specialised equipment including hospital beds, hoists, wheelchairs, commodes, walking aids, stair...
We asked carers what advice they had for professionals caring for people with a terminal illness. They wanted professionals to be honest, listen to the needs of the patient and carer, be compassionate and respectful at all stages of the process and treat the patient and carer as part of the team.
The diagnosis of a terminal illness is likely to be extremely difficult to accept and come to terms with for both the patient and the people close to them. Information about the prognosis (how the illness may develop) is also often a very difficult area to learn about. However, most carers preferred health professionals to be honest with them, and sometimes worried that they were being protected from the truth. Many carers were unfamiliar with the term ‘palliative care’ and did not initially understand the implications of this term. Carers specifically advised professionals to:
End of life care or palliative care is focused less on treatment for a condition and more on making patients comfortable and supporting them and their carers. It is appropriate that care is tailored towards individuals’ values and preferences rather than entirely biomedical knowledge. Carers often felt frustrated if they felt they or the patient were not listened to or their opinion wasn’t valued. Carers specifically advised professionals to:
There are some fundamental areas where carers felt some health professionals could improve. These may be addressed by adopting a different approach and learning new skills. Carers specifically advised professionals to:
Many carers experienced a lack of coordinated care and witnessed ineffective communication between different health professionals and agencies. This often caused unnecessary stress and work for carers. They advised professionals to:
Caring for a person at home until their death can require the use of specialised equipment including hospital beds, hoists, wheelchairs, commodes, walking aids, stair...
Taking on a caring role frequently triggers changes in relationships (see also 'Impact of caring and terminal illness on family and friends'). For many people,...