Dying well at home: the case for integrated working
Choosing to die at home - professionals and providers should:
- Identify people who may be in their last year of life to ensure that they can access palliative care services when they need it.
- Liaise with all those involved in the care of the person.
- Support people at the end of life to choose their place of care and/or death.
- Provide information and support to carers.
Choosing to die at home - commissioners should:
- Encourage providers to have a protocol for identifying and meeting the need for end of life care at home.
- Ensure, wherever possible, that people are enabled to die at home if they wish. Characteristics such as age or condition should not automatically exclude people.
- Ensure that providers have protocols in place for liaison between disease specialists (often in hospital settings) and primary/community staff.
- Ensure that support and services for carers are a priority.
Dying a good death - 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.
Meeting carers’ needs - professionals and providers should:
- 'Think family' and consider how support for carers can impact on care for the patient.
- Regard carers as central partners in care who need:
- to be informed about the patient’s medical condition and how it is likely to develop
- to be trained to carry out basic nursing tasks
- to know how they can get help at any time.
- Ensure that carers have a named professional who can assist them in accessing health and social care services, equipment and support.
- Ensure that carers have direct access to advice on financial planning, available benefits and how to maximise household income.
- Alert carers to their statutory right to an assessment and ensure that the assessment is followed by a written care plan that is implemented.
- Provide bereavement support to carers after the death of a loved one.
Coordinated care: health and social care and housing - 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.
Accessing equipment and services - commissioners should:
- Ensure that there are protocols in place to deal with the key issues in rolling out electronic palliative care coordination systems (EPaCCS) or their equivalent, including what information should be recorded, how it is collected, updated and quality assured, and who should have access to the data.
- Assess the support available to people dying at home and their carers ‘around the clock’, and take steps to address the large gaps in service provision.
- Ensure that there are agreed protocols (e.g. prescription of opiates) between out-of-hours locum GP services and with regular primary care.
- Ensure that hospital discharge planning and case conferences include community staff, for example a district nurse.
- Ensure that there is a single point of contact for carers through which they can arrange a home-based assessment for home-based equipment by a qualified professional, such as an occupational therapist, and be trained to use it as necessary.
- Consider commissioning services that provide for blood transfusions and other intravenous procedures, which are available to people in their homes in order to avoid emergency hospital appointments and admissions.
- Commission services that address the need for patients to have analgesia at all times, as poor pain relief is often responsible for emergency admissions. Ensure that equipment such as syringe drivers and palliative care kits are available.
- Consider the provision of personal alarms for frail patients and carers and telecare.
Costs of dying at home
- The NHS should have a better evidence-based understanding of the relative costs of specialist and generalist care at the end of life, analysed according to place of care delivery.
- Time spent in hospital in the last year of life is the most expensive factor in end of life care. Policy makers and commissioners should concentrate on interventions to keep people out of hospital if they do not need to be there, and to discharge them as early as possible.
- Economic analyses should reflect the ‘cost’ to family members of caring, and should consider how savings to the state can be harnessed to support carers to continue to care at home.
Commissioning - 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.
Commissioning - 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.