Dying well at home: the case for integrated working

Accessing equipment and services

Equipment and community services needed in the home to enable people to be cared for until death

The most beneficial thing I found was having the drugs in the home, to be able to administer when you need to, instead of going through the OOH [out-of-hours] service and having to wait for drugs.

Community nurse [25]

Key points from research and policy

Electronic palliative care coordination systems (EPaCCS), also known as locality registers

• The EPaCCS register is a locality register held on a primary care computer database, which holds key information for people who have been identified as approaching the end of life. Local decision makers must adopt the related core information standard (ISB 1580) [27], which will include the patient’s choices around end of life care and place of death. Local decision makers will also decide who can access and edit the electronic system.
• Information should be shared across health and social care and between different health sectors, for example primary and acute care. Hospital and ambulance staff may have no information on patients admitted through Accident & Emergency [58].
• Although, in principle, EPaCCS are likely to improve coordination, the pilot initiatives have identified a number of issues. These include [27]:
  • whether these are outline registers or care plans
  • who should – and who has time to – update them, and how useful they are if not updated
  • how omissions, such as failure to record preferred place of death, will be dealt with
  • who needs to have this information (e.g. ambulance crews are thought to be an essential user; social care staff may not have access)
  • the role of patient consent in recording information and deciding who can see it.
• Registers may need to include people who have a long-term deteriorating condition, which could progress to a terminal phase at any time. People with Parkinson’s disease, stroke and chronic obstructive pulmonary disease are likely candidates.

Well-coordinated and out-of-hours services in the community

• Very often, carers in difficulty at night rely on the out-of-hours GP service for support, which may both be slow to respond and have little information about the patient. Another common alternative is to call the ambulance service. Both of these options may result in a patient being admitted to hospital, unnecessarily and/or against their expressed wishes.
• Out-of-hours medical provision, including access to analgesic medication and medical records, is often poor. Locums do not know the patient and may be unwilling to prescribe morphine [59]. Out-of-hours doctors usually have no patient records and so they rely on carers to brief them.
• Coordination of care among community-based staff, and between day and night staff, is a problem [59]. Coordination between hospital and community, when a person who is in a terminal phase is discharged home, is also often inadequate. Community staff should be formally included in hospital discharge planning.
• A night nursing service (e.g. from the Marie Curie Cancer Research charity) may be available to give carers support overnight, although in some places this service is restricted to cancer patients. Carers may wish to purchase (with or without direct payments) their own night care, although some have found it difficult to identify suitable people [16]. Friends and relatives may also take on this role.

General needs for home equipment

• To support dying at home, research suggests that a home will need:
  • the patient’s DNACPR (do not attempt cardiopulmonary resuscitation) status identified and notified to ambulance services
  • discharge summaries faxed to the GP and the out-of-hours GP service [49]
  • bed space with electric sockets nearby
  • prescription of oral and subcutaneous opiates
  • a ‘lock box’ provided for drugs
  • a copy of a leaflet with the title ‘The Last Few Days or Weeks at Home’
  • a list of useful telephone numbers for carers
  • equipment for caring for people at the end of life in the home setting, which may include oxygen supplies, hoists, commodes, bath chairs and beds with pressure relief mattresses.
• Carers should not be expected to know what will be needed, and should be offered a home-based assessment by a qualified professional (e.g. an occupational therapist), and a person to contact when the person’s needs change and different equipment is required.

Blood transfusion

• Some clinical interventions that people may need at the end of life could easily be delivered at home. An example is blood transfusion, which is commonly required in end of life care for cancer to address anaemia and improve wellbeing [60].

Pain-relieving drugs and syringe drivers

• Managing complex medication at home can be a problem. One review on hospice care at home [5] reported problems with medication compliance in 60 per cent of patients receiving care at home, and most patients had two or more prescribers (hospital and GP).
• Syringe drivers can be highly effective in administering appropriate levels of palliative and pain-relieving drugs in the home setting. A study [15] of their use by community nurses in rural settings found that nurses needed training in their use.
• Palliative sedation is often used in the last days of life to control symptoms such as agitation, breathlessness and pain. A review [61] of the clinical literature found that this could be provided safely in the home setting, although it is more common in hospitals and hospices.
• Not having drugs in the home ready for use when pain escalates is a common reason for hospital admission of people during terminal illness. One rural Canadian study [62] showed that palliative medication kits, which are kept in the homes of people approaching death, can enable people to remain and die at home. In the UK context, having drugs in the home may overcome the reluctance of locums to administer opiates and other analgesia.

Telecare and personal alarms

• In remote areas, people may have little access to services, and may in effect (with family carers) have to monitor their own symptoms and decide whether they are in need of further support. In rural Scotland, patients found that a handheld mobile phone application to share symptoms and queries with remote health professionals was reassuring [63].
• The most common telecare applications in rural Scotland [63] are dedicated out-of-hours specialist advice through telephone lines, with enquiries about symptom control and medication advice uppermost in the concerns of callers.
• Personal alarms, designed to be worn as pendants around the neck, were made available to patients at home in an Australian study [64]. The alarm would trigger an alert to a hospice service. Patients reported the benefits of having a greater sense of security, especially if they fell, and increased confidence in carrying out daily tasks. However, patients tended to remove the alarm in the shower, and while sleeping. Personal alarms could be relevant and useful for homes where both the person with the terminal illness and their carer may be frail.