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The GSF Proactive Identification Guidance (PIG)

The GSF Proactive Identification Guidance (PIG) is a practical guide for clinicians enabling earlier recognition of decline for patients considered to be in their final year/s of life. It is a key tool used within the Gold Standards Framework (GSF) Quality Improvements Training Programmes to support earlier identification of patients, enabling better assessment of their needs and planning care in line with their needs and wishes. The PIG aims to clarify the triggers that help to identify patients earlier, in order that care can be better planned, more proactive, anticipate patients’ needs and take into account their own wishes following a discussion of their choices and preferences (advance care planning discussion). These patients should be included on a supportive/palliative/end of life care register in their GP practice, care home or hospital and in many areas these patients are included on a locality register (digital shared information record) or EpaCCS.

The General Medical Council definition of end of life care

People are ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes people whose death is imminent (expected within a few hours or days) and those with:

Advanced, progressive, incurable conditions
General frailty and co-existing conditions that mean they are expected to die within 12 months
Existing conditions if they are at risk of dying from a sudden acute crisis in their condition
Life-threatening acute conditions caused by sudden catastrophic events..

Once identified and included on the register, such patients may be able to receive additional proactive support, leading to better coordinated care reflecting their preferences. This is in line with current thinking on shared decision-making processes and the importance of integrating advance care planning discussions into delivery of care. It is based on consideration of people’s needs rather than exact timescales, acknowledging that people need different things at different times. Earlier recognition of possible illness trajectories means their needs can be better anticipated and addressed. Read the guidance here

Use of GSF Needs Based Coding

Once patients have been identified they have a needs assessment. Needs based coding is used to highlight the level of need by using the red, amber, green (RAG) colour coding system. Red colour coding signifies last days of life, amber – deteriorating, green – decline/ unstable/ advanced disease.

Note – although there is an obvious correlation with timescales and progression of the disease trajectory, this needs-based coding relates to changing needs at different stages to ensure that the patients’ needs are anticipated and met so the right person receives the right care at the right time in the right place – every time.

Advance Care Planning (ACP)

Advance Care Planning (ACP) is a structured discussion with patients and their families or carers about their wishes and thoughts for the future. In essence ACP is an important yet simple conversation that can change practice and empower patients.

Health and care providers play a key role in introducing ACP discussions at important stages in peoples’ lives e.g. during admission to hospital if their condition deteriorates, with their GP when attending an appointment at the practice or when admitted to a care home. Some people will already have considered these things and may or may not have written it down, so it is increasingly important to ask if they have discussed this or have an ACP already, to guide further discussions. Some patients may decline the opportunity to engage in ACP conversations as this is a voluntary process peoples decisions should be respected but documented to help inform others involved in their care.

ACP is an internationally recognised term used by over 40 countries worldwide. It is in line with the UK Mental Capacity Act 2005. Using the Mental Capacity Act – This video explains the Mental Capacity Act and how it can protect the right to make choices.

The goal is for people to have the opportunity to engage in conversations and be able to clarify their wishes, needs and preferences and have care delivered in alignment with them.

The Advance Care Planning process includes

What you want to happen or an Advance Statement of wishes and preferences (AS) (not legally binding)

What you don’t want to happen – specific medical interventions you don’t want to happen, documenting in an Advance Decision to Refuse Treatment (ADRT) (legally binding)

Who will speak for you– if lacked capacity and were unable to speak for yourself who would you want to speak for you – Lasting Power of Attorney for Health and Welfare. It is important for all to express their wishes, so the LPA is aware of them.

Context – specific treatment recommendations & clinically led discussions about treatment preferences Cardiopulmonary discussions, Emergency Health Care Plans, Treatment Escalation Plans, ReSPECT, Deciding Right tools all help support the discussion process and can guide practitioners in making future decisions.

Advance care planning discussions open up a space in which such plans and reflections can be discussed, a place for contemplating future outcomes and eventualities within a safe environment in order to maximise life in the present. There can be a deeper significance of this discussion, in drawing closer to the person’s sense of meaning and core values, of the way they make sense of the world and inner life and in enhancing not decreasing a sense of optimism, self- determination, control and hope.

It can be a number of discussions over time, a ‘relationship’ discussion with regular reviews and can helps catalyse deeper communication between patients and their families and loved ones. It need not be ‘over medicalised’ or too formalised, and could be undertaken by any involved in end of life care, though is best undertaken by experienced trained staff who know the person well, such as GPs, community nurses, care staff and specialists.

What are the personal benefits of ACP?

Enables greater autonomy, choice and control - respects the person's human rights, enabling a sense of retaining control, self-determination and empowerment.
There is greater concordance with wishes if they have been discussed, for example more people die in their preferred place of death
Proactive decision making reduces later burden on family and relieves anxiety
Greater satisfaction, reduced anxiety and depression in bereaved relatives
The process can itself be therapeutic and enable resolution of relationships
Enables deeper discussions and consideration of spiritual or existential issues, reflection on meaning and priorities and encourage resilience and realistic hope

What are the health and care system benefits

Enables better planning of care, including provision by care providers
Improves the quality of end of life care provided for individuals and populations
Reduced unwanted or futile invasive interventions, treatments or hospital admissions, guiding those involved in care to provide appropriate levels of treatment
Economically cost-effective in reducing costs

Advance Care Planning for people who lack capacity

If someone doesn’t have the mental capacity to carry out advance care planning then discussion with their family, LPA, GP, nurse or social worker can help determine what would be in their ‘Best Interests’. Best Interest Meetings are formal gatherings designed to support decision-making on behalf of individuals who lack the capacity to make decisions themselves. These meetings are governed by the principles outlined in the Mental Capacity Act, which emphasise the importance of acting in the individual’s best interests, considering their past and present wishes, feelings, beliefs, and values. A best interest meeting may also include an independent Mental Capacity Advocate (IMCA) where there is no one independent of services, such as a Family member or friend, who is able to represent the person.

Who attends a Best Interest Meeting

Family members: Close relatives with a vested interest in the individual's well-being and may provide valuable insights into their preferences and wishes.
Caregivers: Professionals involved in the day-to-day care of the individual, such as healthcare workers, social workers, or support staff.
Healthcare professionals: Doctors, nurses, therapists, and other medical professionals can provide expert input on healthcare decisions.
Legal representatives: Lawyers can offer guidance on the legal aspects of decision-making and ensure compliance with relevant laws and regulations.