Dying well at home: the case for integrated working

Dying a good death

Improving the experience of people dying at home

They talk to you like you’re an imbecile ... I have all my faculties, I just can’t walk.
Person being cared for at home [17]

Recommendations

Professionals and providers should:

Personalise end of life care and treat patients/service users and carers as experts in their needs and preferences.
Involve people approaching the end of life in how care is delivered so they can continue to take part in valued activities and relationships and to determine their own routine activities and priorities.
Treat patients/service users who are dying with dignity and respect, not talking down to or over them, even if they appear to be unconscious.
Involve same-sex partners and be sensitive to cultural preferences and priorities.
Identify and respond to the spiritual and cultural needs that are important to the person and their carers.
Give people at the end of life and carers as much information as they want about the dying process and the services available.
Ensure that staff have had adequate training so that they can initiate conversations with people about their wishes and choices at the end of life.
Support those wishing to die at home to draw up an advance care plan, which specifies their wishes as the end of their life approaches. This should contain both advance statements of wishes (such as preferred place of care and of death) and any advance decisions to refuse treatment (such as instructions about resuscitation). A copy should stay with the person.

Key points from research and policy

Being person-centred

The national End of Life Care Strategy for England [18] defines ‘a good death’ as:
- being treated as an individual, with dignity and respect
- being without pain and other symptoms
- being in familiar surroundings
- being in the company of close family and/or friends.
Little research explores the views and experiences of people dying at home. Carers are powerful advocates and their views are often the only guide to service user experience.
Being treated with dignity and respect is important to people at the end of life.
Service users and carers are often reluctant to complain about services, fearing they will be regarded as troublesome and their care jeopardised [17].
People at the end of life should have the choice to continue taking part in valued activities and relationships and to remain in control of their lives [19].
People who are dying and their carers are at risk of social isolation, especially as some friends and family may be uncomfortable with the thought of death ([16], SCIE Project Advisory Group).
Health and social care professionals should not assume that everyone is heterosexual [20], and should recognise and support minority lifestyles, identities and cultural preferences.
While there is no agreed definition of spirituality, health and social care professionals should be alert to the need for spiritual care, which is not necessarily underpinned by specific systems of faith or religion [21].
Carers can offer spiritual care by having the time to listen to their loved ones [21].
People may need practical, legal or emotional support to deal with ‘unfinished business’: ‘A good death is where the patient has come to terms with the fact they are dying, they are at peace with themselves’ [17].

Advance care planning

People who are dying should have the opportunity to make an advance care plan, which includes where they would like to die and whether they would prefer treatment and/or resuscitation as their condition deteriorates. Advance care planning may also include:
- advance statements to inform subsequent ‘best interests decisions’ (sometimes called ‘statements of wishes’)
- advance decisions to refuse treatment, which are legally binding if valid and applicable to the circumstances at hand
- the appointment and registration of lasting powers of attorney (‘health and welfare’ and/or ‘property and affairs’) [22].

Difficult conversations

GPs and primary care nurses say that people may change their minds about preferences for care, treatment and preferred place of death [23].
Some GPs and nurses find it difficult to discuss death, regarding it as potentially unethical: ‘The patient’s convinced that the treatment ... is going to make them better ... you wouldn’t dream of talking to them about where they want to die’ (district nurse [23]).
If they cannot discuss death with a patient, professionals may make assumptions about what the person would prefer.
Primary care staff need training and support to develop advance care plans. It is important to establish and record people’s preferences, both to see that they are respected and met, and to enable audit.

Practice examples

Practice example 1 illustrates a volunteer befriending service, which can combat social isolation and help users and carers carry on with some of the activities they enjoy.
Practice example 6 is about ensuring that the dying person’s wishes are recorded and kept with them, so that they are accessible especially to professionals who do not know them, out-of-hours locum GPs and ambulance crews.