Dying well at home: the case for integrated working

Coordinated care: health and social care and housing

Working together to support people dying at home

It’s much easier to look after somebody with dementia if you’ve known them for years and years ... you’ve seen them gradually decline and you sort of know yourself that they’re slowly dying.
GP [38]

You would like not to have to rush off; you would like to do the little things that just make that person’s life a little bit more variable ... and that’s heartbreaking when you’re having to drive away ...
Community nurse [39]

Recommendations

Professionals and providers should:

Ensure that networks and coordination arrangements are in place to enable health and social care professionals (including those responsible for arranging and delivering the care) to work together and share their knowledge.
Ensure that patients/service users and carers see the same familiar staff where possible, and have a single nominated person to contact for advice who has influence across health and social care.
Ensure that professionals are able to work flexibly and are responsive to the needs of patients/service users and carers.
Ensure that GPs identify people approaching the end of life, and discuss and record end of life issues with patients/service users and their families. Ensure that the new electronic primary care registers are used to coordinate care and take account of people’s wishes.
Recognise the vital contribution that district and community nurses make to end of life care. Invest in the recruitment, training and supervision of health and personal care assistants as well as domiciliary care staff.
Ensure that patients/service users and carers can access specialist advice and support ‘out of hours’, including essential medication and drugs for pain control.
Ensure that advance care planning documents are accessible to out-of-hours and ambulance staff.
Ensure that home care (or domiciliary) workers, healthcare assistants and extra care housing workers are trained and supported to work with people dying at home and their carers.
Consider the role that social workers can play in supporting people at the end of life.

Commissioners should:

Develop joint protocols between ambulance services, secondary care staff and primary care staff in relation to resuscitation – do not attempt cardiopulmonary resuscitation (DNACPR) – orders, and other relevant documents on patient choices for care.
Work to speed up hospital discharge so that people do not die in hospital while waiting for community nursing cover, equipment or transport.

Key points from research and policy

Specialist palliative care

Specialist palliative care is:

The active, total care of patients with progressive advanced disease and their families. Care is provided by a multi-professional team who have undergone specialist palliative care training. The aim of the care is to provide physical, psychological, social and spiritual support.
Tebbit [40]

Specialist palliative care teams are not universally available. Therefore, most of the health and social care services provided in the home are provided by ‘generalist’ workers, such as GPs, district nurses and domiciliary home care workers, who do not necessarily have training in palliative care.
Multidisciplinary palliative care teams, sometimes called ‘hospice at home’ or ‘rapid response’ teams, may be available in the local setting. If so, face-to-face care is usually provided by a single nurse or healthcare assistant with specialist training, supervised by a senior clinician.
Currently, about 355,000 people across England need palliative care, but fewer than half receive it [40].

Generalist palliative care

There is local variation with regard to the provision of palliative care. The third or voluntary sector is active in providing palliative care.
End of life care in the home is often led and provided by GPs and district nurses, as there is a shortage of specialist care services.
GPs (and patients and carers) may have difficulty in identifying the point when a person is approaching death [38]. There may then be delays in referring patients to palliative or nursing care. GPs say they often do not know the patient’s wishes [41]. GPs may be reluctant to discuss the person’s impending death and therefore do not clarify what the person’s wishes are [1, 23].
Community nurses suggest that GPs, and in particular locum GPs working at night, can be ‘risk averse’.
The Gold Standards Framework (GSF) for primary care has been said by nurses to have improved communication and teamwork between GPs and community nurses [43]. The framework has been shown to improve the chances of people wishing to die at home to do so.

Care providers working together

Hospice at home and palliative care teams tend to work best if there is good communication between frontline and ‘managing’ staff. Care planning, care coordination and liaison are important activities of the team. Hospice-type services delivered at home have been shown to prevent hospital admissions, but are more likely to be effective if:
- they can offer rapid response at all hours
- they do not rely on agency nurses
- they can provide overnight nurses
- they include provision for prescribing medication [44, 45, 46, 47].
As most people in the last year of life spend time in hospital, rapid discharge teams can increase the number of people who are able to die at home [45, 48, 49]. Arrangements for discharge include:
- liaison with community services
- procurement of equipment and drugs
- prioritisation of people at the end of life for hospital transport.
Domiciliary home care workers [50] and extra care housing officers [51] are well placed to provide practical advice, personal care and emotional support to people dying at home.
Social workers are rarely available to people dying at home but may well have the skills to support advance care planning and to assist with practical and financial problems [10].

Practice examples

Practice example 2 describes a training initiative developed by local authorities in partnership with adult education services to equip domiciliary workers for end of life care.
Practice example 3 shows some of the outcomes for patients when primary care staff adopt the Gold Standards Framework for supporting people to die at home.
Practice example 5 describes a 24-hour support and coordination service – Partnership for Excellence in Palliative Support (PEPS) – which provides palliative care support, accessed through a single contact point.
Practice example 10 describes the Amber Care Bundle for specific use with people who have had a stroke.