Supporting families and carers in the last days of life

Caring for patients in the last days of life is both physically and emotionally challenging. Supporting the family¹ and carer(s) of a patient in the last days of life is an important aspect of routine care; for advice, see Family support in palliative care and Support for carers in palliative care.

Encourage family members and carers to stay with the patient as much as they wish. Providing care (including general care) and assisting with drug administration can help them feel involved.

Family members and carers may also need ‘permission’ to take a break and have a rest themselves. Be honest with family and carers about the uncertainty of any prognosis estimate and regularly update them with changes. Encourage family members and carers to discuss their feelings and concerns and offer them support; see Prebereavement support for adult family members and carers and Prebereavement support for children.

Explain the dying process to the family and carers as well as how symptoms will be managed—see Guidance for explaining the dying process and aspects of care in the last days of life to family members and carers for guidance on explaining the dying process and aspects of care in the last days of life.

Family and carers are often reassured when they are told that the patient may be able to hear, understand and appreciate familiar voices, or respond to touch.

As death approaches, families and carers may be concerned that the process is being accelerated by drugs, particularly opioids. Some may even blame drugs for deterioration and death. Acknowledge the concerns of the family and carers; carefully explain that deterioration is due to the dying process and that drugs are required to manage symptoms. There is no evidence that appropriate drug therapy in the last days of life hastens death, provided that drugs are given in response to symptoms and titrated gradually and appropriately to manage symptoms effectively—see Guidance for explaining the dying process and aspects of care in the last days of life to family members and carers for an example explanationThorns, 2000.

Table 1. Guidance for explaining the dying process and aspects of care in the last days of life to family members and carers
Aspect of the dying process or care	Example explanation
acknowledging feelings about the patient’s impending death and offer support	‘Waiting for someone (or your mother/father/the patient’s name) to die is a very hard time, but we are here to support you.’
communicating with an unconscious patient	‘Speak in your normal voice because they (or your mother/father/the patient’s name) may be able to hear. They may not fully understand what is being said but they will sense your presence.’
altered breathing in an unconscious patient	‘Breathing patterns often change towards the end of life; this can be a bit of a shock but these changes can be normal in this phase of life. You may notice long pauses, gasps, snoring sounds and fast shallow breaths. Pauses in breathing are likely to get longer; sometimes they may last for a few seconds until the breathing fades away. When the breathing does not start again, this is when we know they have died (or your mother/father/the patient’s name has died).’
patient nutrition and hydration	‘They (or your mother/father/the patient’s name) are unlikely to feel hungry or thirsty. They may find swallowing hard, and if food or drinks are given, they can go down the wrong way. Rather than giving drinks, we can relieve a dry mouth using swabs soaked with water to moisten the mouth, under the tongue and on the insides of the cheeks.’
role of drugs	‘We can use medications to keep them (or your mother/father/the patient’s name) as comfortable and symptom-free as possible. When used appropriately, these drugs won’t hasten or cause death.’
respiratory tract secretions	‘They (or your mother/father/the patient’s name) may develop rattly breathing; evidence suggests it’s like snoring. This happens when secretions aren’t swallowed, so moving them into another position might help. It doesn’t cause distress to the person doing it, just other people in the room.’
agitation in a patient	‘They (or your mother/father/the patient’s name) may not understand or be fully aware of what is happening; this could make them look distressed or restless. We can try some options to calm them; if these don’t work, we can give medications as needed.’

¹ ‘Family’ should be interpreted in the broadest manner—it includes whoever the patient says is important to them.Return