Dying well at home: the case for integrated working

Commissioning

Systemic and organisational issues

The local picture of services is very varied: they should be democratically controlled. GPs should be accountable for [end of life care] services. Patient participation is very important.
Carer [16]

Recommendations

Commissioners should:

Review palliative and end of life care services available in the locality to confirm that they are able to support people of different ages, ethnicity and social background to die well at home.
Ensure that training is available for ‘generalist’ carers in the community who provide most end of life care for those who die at home. Training needs to include communication and care planning with patients and carers, and improving their own understanding of good-quality palliative care (including the use of analgesia). Less well-qualified staff can provide good responsive care if they are trained and well supervised.
Commission specialist palliative rapid response teams and rapid discharge facilitation teams and model possible cost savings.
Encourage general practice surgeries to use the electronic palliative care coordination systems (EPaCCS) register to promote patient choice, to improve coordination and to monitor outcomes of improved services.
Consider how expertise on specific disease pathways can be made available to community health workers.
Ensure that commissioned service practitioners are trained in, and compliant with, the provisions of the Mental Capacity Act 2005.
Ensure that commissioned service practitioners are trained in the core competencies developed by the National End of Life Care Programme, Skills for Health, Skills for Care and Department of Health.

Professionals and providers should:

Develop local protocols and processes of communication and coordination as these can improve patient and carer experience.
Ensure that contracts provide 24-hour access to advice and support, for example a telephone helpline staffed by a palliative specialist to improve patient care and reduce expensive and unnecessary out-of-hours emergency admissions.
Ensure that patients, families and the public have access to information about what dying at home may involve and that there are local services that can meet their needs.

Key points from research and policy

Deficiencies in generalist care

Much of the information within this guide concerns commissioning. Most end of life care for people living in the community is provided by ‘generalists’ (GPs, district and community nurses and health and social care assistants). Access to voluntary sector palliative specialists is largely dependent on where people live and whether their primary diagnosis is cancer. This suggests that there is great unmet need, a huge burden on carers who are often frail themselves, and many unnecessary and unwanted admissions to hospital when crises arise.
A consultation on ‘generalist’ end of life care [72] found:
- There was a lack of expertise in and a need for funding of training for end of life care. Funding for end of life care training is not ringfenced, but implementation of initiatives such as Liverpool Care Pathway requires training. Training of the health and social care workforce is challenging because staff are overstretched, and there is a high turnover of social care staff.
- There were gaps in primary care provision, including:
  - the low number of senior community nurses
  - lack of investment in end of life care in general practice
  - poor provision of out-of-hours services with no night-time nursing cover
  - poor communication between GPs and out-of-hours locums.
- There was poor integration between health professionals and social care assistants, and poor continuity of care between hospitals and community staff, including the referring GP. Roles were not clearly defined, and little of the condition-specific expertise of consultants filtered through into end of life care in the community.
- End of life care initiatives that were supposed to support better generalist care were often not evidence based and/or rigorously evaluated for cost-effectiveness. Evaluation of advance care planning is an example. A poor evidence base may discourage adoption of policy.
- There was no equality of access for different types of people, for example frail older people. Those without cancer may not get palliative services, especially if they have learning difficulties, mental health needs, or cultural or language issues. Voluntary sector services and hospices cannot be presumed to fill the gap.
Commissioners should consider who should be providing end of life care in the community, whether their current roles, skills and capacity equip them for it, and whether specialist palliative staff could provide better value [70].
The National End of Life Care Programme has produced a toolkit for health and social care commissioning [73]. It identifies the main elements involved in commissioning end of life care services, explains the commissioning cycle in practical terms and offers a four-stage approach across all sectors.

Integrated commissioning

The National End of Life Care Programme [66] has also produced guidance based on contributions from end of life care commissioners and providers of services within seven primary care trust areas. Although the report covers death in all contexts, the following essentials were highlighted:
- strong commissioning and clinical leadership
- use of nationally recognised drivers that attract payment for providers, especially GPs, and especially to improve out-of-hours cover
- flexible budgets and care packages
- use of nationally recognised tools or their local equivalent – advance care planning, preferred place of care etc.
- shared electronic information systems, linked to acute settings – important in order to ensure proper coordination across services and recording and abiding by the individual’s preferences
- clearly defined access to 24-hour cover – a single point of access was raised as beneficial to patient and carers, as was the use of anticipatory drug boxes in the home to allow 24-hour access to medication
- use of facilitator roles and coordination of care across boundaries – coordination of care, and working together, is everybody’s business, but the introduction of facilitator roles with a single point of access appears to have a positive impact on services
- training to support staff delivering end of life care – training is seen as an investment priority, and applies at virtually all staff levels; GPs, out-of-hours GPs, district and community nurses, and community providers of social care are insufficiently trained in end of life care; staff also need training in the use of the electronic information sharing systems.
The National End of Life Care Programme has combined with Skills for Health, Skills for Care and the Department of Health to produce a set of core competencies for staff working with people at the end of life [74]. A companion guide to workforce development has also been published [75].

The future

There is remarkable agreement from commentators on the core areas that commissioners should address in order to improve quality and equality of access to end of life care for people dying at home. Despite the costs involved, there are likely to be significant resource savings if more people are kept out of hospital and are cared for at home.
Carers may lack clarity about how money is allocated and how services are arranged. They are concerned about the effect of new commissioning arrangements on end of life care services.