Quality and Excellence in Specialist Dementia Care (QESDC): baseline one-off self-assessment tool and reporting arrangements

Outcome 3. End-of-life care

People with dementia are involved in the planning and decisions about their end-of-life care and receive the care that respects their wishes and meets their individual needs. Prognostic indicators are used to prompt timely and appropriate discussions with people with dementia and their carers or families, including issues such as Do Not Attempt Cardiopulmonary Resuscitation (DNACPR).

Boards recognise the importance of patients and carers being involved as much as possible in decisions around end-of-life care and present evidence of complying with national guidelines, including the Interim Guidance: caring for people in the last days and hours of life^[6] and the Living and Dying Well action plan.^[7]

They are also aware of the advantages of anticipatory care planning and advanced directives, and present examples of use. NHS Greater Glasgow & Clyde, for instance, uses anticipatory care plans to establish patients' preferred place of death and define the care to be given, including accessing the board's rapid discharge algorithm if appropriate. Hospital staff in NHS Lanarkshire are using anticipatory care plans to facilitate discussions with patients and carers that focus on their wishes and beliefs.

This is not the case in all boards, however. One of the wards surveyed in NHS Lothian, for example, was unable to present evidence of advance planning per se, but staff nevertheless work with carers to ensure that people's choices are met as fully as possible, and this is routinely included in end-of-life care plans. While anticipatory care planning is used in most areas in NHS Tayside to guide staff on patients' wishes, the board feels that the culture of anticipatory planning needs to become more embedded in specific wards. Local training is in place to address this issue.

As is the case across the country, NHS Ayrshire & Arran follows the advice detailed in the NHSScotland Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) Integrated Adult Policy,^[8] which aims to prevent inappropriate or unwanted attempts at cardiopulmonary resuscitation (CPR). DNACPR certificates are always completed with the involvement of family/next of kin if the decision not to attempt resuscitation has been reached. DNACPR is included in medical and nursing induction training throughout the organisation.

The National DNACPR policy has also been introduced in NHS Lothian and NHS Western Isles, with information resources (virtual and paper-based) and awareness-raising training being made available to staff. All patients who have a DNACPR certificate in NHS Lothian have documented evidence explaining why the certificate was issued, with carers involved in multidisciplinary discussions and reviews. Evidence was found during the survey process in NHS Lothian that the DNACPR forms had recently been audited by the senior charge nurse.

An audit to ensure DNACPR certificates were in place was also undertaken in the elderly mental health wards of NHS Ayrshire & Arran, with positive results. These audits will be repeated at regular intervals. Audits in NHS Forth Valley showed that a DNACPR form had been completed for 99% (n=82) of patients in the Forth Valley Royal Hospital who had an expected death. The process will now be replicated in community hospital wards. In NHS Borders, auditors on one of the board's two units for people with dementia noted that DNACPR forms were completed and visible in 95% of patient notes.

Other relevant initiatives taken forward by boards include the following.

• Patients living with dementia may have difficulty vocalising pain due to cognitive impairment. Assessment tools for patients who may be unable to communicate pain, such as the Abbey Pain Scale and DisDat scale, are being used in inpatient areas and NHS contracted beds in NHS Lanarkshire to improve recognition of pain and ensure better relief. NHS Lothian is also using the Abbey Pain Scale with appropriate patients.
• NHS Grampian has developed an integrated palliative care plan derived from the Living and Dying Well national action plan which recommends that all patients are assessed on admission using the Palliative Performance Scale. The plan also covers areas such as skin care, food, fluid and nutrition, continence care, oral care, assessing and monitoring symptoms and anticipatory/palliative medication prescribing. Some areas in the board have access to a palliative link nurse who has completed the European Certificate in Palliative Care.
• The Emergency Department and Hospital Specialist Palliative Care Team in NHS Forth Valley has implemented a supportive and palliative care tool that has been introduced to one area with a view to being extended to other wards. It is recognised that predicting prognosis accurately is highly complex, but using such a tool can be helpful in supporting teams in planning care.

Training initiatives are widespread throughout the boards. NHS Lanarkshire has introduced a two-day palliative care training programme developed by Alzheimer Scotland and NHS Education for Scotland and funded through the Reshaping Care for Older People (RCOP) initiative. The training is delivered by old-age psychiatry nurses and has included staff from all inpatient wards for patients with dementia, including NHS contracted beds. Palliative and end-of-life care training linked to Commitment 11 of the Dementia Strategy has also been developed in NHS Lothian.

Several boards, including NHS Forth Valley and NHS Fife, are supporting staff through training on the SAGE & THYME® model, which is designed to enable all grades of staff to listen and respond to patients and carers who are distressed or concerned.