People with learning disabilities experience many barriers to accessing quality healthcare for serious and terminal illness, including delayed diagnosis (White, et al., 2022), which can make recognising the end-of-life phase difficult. Evidence on access to effective end of life care by people with learning disabilities is sparse. The Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD) (Heslop, et al., 2013), showed that there were problems with treatment and staff recognising that a person was coming to the end of their lives for almost a third of people. This meant that end of life care was un-coordinated with the person’s ability to plan and make choices affected and poor support for the person and their families/carers.
The GSF focuses on seven key principles (sometimes referred to as the 7Cs):
- Communication
- Coordination of the person’s care
- Control of symptoms
- Continuity of care
- Continued learning
- Carer support
- Care of the dying
Not all hospitals or GP practices in Hertfordshire & West Essex use the GSF, but this is a guide for if they do. This information and the principles can also still be useful for care environments supporting a person in their last year of life.
What the Gold Standards Framework does:
The GSF helps health professionals to provide the highest possible standard of care for all individuals who may be in the last years of life. It does this by supporting coordinated, joined up care, so that no matter what stage of illness someone is at, or where they are being cared for, everyone involved in their care is aware of their wishes and supportive in ensuring they are met. GSF helps bring together all the people who provide this care and assists them to ensure that the care is “cross boundary”, avoiding people falling through the net.
GSF encourages health professionals to talk to their patients at the earliest and most appropriate time, about how and where they want to be cared for.
‘GSF seeks to empower frontline health and social care providers to give the right person, the right care, in the right place, at the right time, every time, when believed to be in the last year of life’ (goldstandardsframework.org.uk)
Individuals nearing the end of their life deserve the best care – the ‘gold standard’ of care. That means high quality, reliable and consistent support. GSF encourages health professionals to help families and carers so they can work together to avoid ‘crisis’. Better planning of patients’ care means a last-minute prescription panic or something more major can be averted.
PIG (Link in Appendix 6) is an easy-to-use tool to help professionals more easily and effectively identify those people who are nearing the end of their life who may need additional supportive care.
This includes people who may be at risk of dying in the next 12 months following the three main trajectories of illness:
- Expected deaths: Rapid predictable decline e.g. Cancer.
- Erratic decline: e.g. Organ failure.
- Gradual decline: e.g. Frailty and dementia.
Additional contributing factors when considering prediction of likely needs include current mental health, co-morbidities, and social care provision.
The three Triggers that suggest that patients are nearing the end of life are:
- The Surprise Question: “Would you be surprised if this person were to die in the next few days, weeks or months?”
- General Indicators of Decline: Deterioration of condition with an increasing need of support where ‘no further active care’ decision has been made.
- Specific clinical indicators related to certain conditions.
Evidence suggests it is difficult to predict when someone may be approaching the last year of their life, and this may be particularly so in the case of individuals with learning disabilities. This means that individuals with learning disabilities are likely to be identified as approaching the end of life at a late stage. This will impact the ability to plan and for the person to make choices about their care. It can also lead to problems in coordinating end of life care and providing adequate support and preparation to the person and their family.
Identifying end of life care needs at an early stage is beneficial and can allow more time to plan appropriate support needs effectively. If it is not clear how long this person is likely to survive, then it may be advisable to begin end of life care planning at the earliest possible opportunity so that it can be undertaken at the emotional and cognitive pace of the individual, particularly for those with a learning disability.
The Learning Disability Annual Health Checks provide a comprehensive and holistic review of the patient, therefore providing an opportunity for the health professional to consider ‘The Surprise Question’. Would you recognise an individual with a learning disability at the end of their life? Some general indicators can include:
- Deterioration in the person’s baseline wellbeing
- Deterioration in the person’s abilities, such as meets their own activities of daily living.
- New comorbidities or increasing difficulty in managing existing ones.
- Progressive unintended weight loss.
- Repeated and increasing unplanned heath crises or admissions to hospitals.
- Decreasing response to treatments or reversibility of illness.
Following an assessment, the GSF suggests people are given a needs-based coding to highlight potential support required. A red, amber, green (RAG) colour coding system is used. Red colour coding signifies last days of life. Amber colour coding signifies a person is deteriorating. Whereas green colour coding signifies a person is in decline, unstable or experiencing advanced disease. This is reflected in the table on the next page but also in how the toolkit chapters are organised.
6 stages of End of Life pathway
