PALLIATIVE CARE & INTELLECTUAL DISABILITIES
Providing effective, high-quality care for someone with an intellectual disability during the end of their life is a highly skilled and challenging role. Without support and information, staff and carers can find the experience overwhelming. The guide follows the six steps of the end of life care pathway, beginning with initiating discussions as end of life approaches and concluding with care after death.
Continuous Inputs
From beginning to end there are 4 key ongoing contributions;
1. Social care
2. Spiritual care services
3. Support for families and carers
4. Information for patients and carers.
1. DISCUSSIONS AS THE END OF LIFE APPROACHES
4. DELIVERY OF HIGH QUALITY SERVICES IN DIFFERENT SETTINGS
2. ASSESSMENT, CARE
PLANNING AND REVIEW
3. CO-ORDINATION OF CARE
6. CARE AFTER DEATH
Good end of life care does not stop at the point of death. When someone dies all staff need to follow good practice. The support provided to relatives will help them cope with their loss and is essential to achieving a ‘good death’. This support is also important for staff and other service users.
Recognition of the dying phase is very important to ensure this process is well supported for the individual, family, friends and staff. How someone dies remains a lasting memory and impacts greatly the bereavement experience as well as on how able staff are to continue to do their job in the future.
5. CARE IN THE LAST DAYS OF LIFE
CREATED BY: Mark Dornan
Volunteer
One of the key challenges for staff and family members is to develop sensitive, open conversations with people with LD who are nearing the end of life. These conversations need to take account of the person’s preferred communication style, cognitive abilities, understanding of language, serious illness, death and dying as well as concept of time.
An early assessment of a service user’s needs and wishes as they approach the end of life is vital to establish their preferences and choices. It is important to explore the physical, psychological, social, spiritual, cultural and, where appropriate, environmental needs and wishes of each individual.
It is vital at
an early stage to establish good systems for communication and appropriate transfer of information across settings in keeping with the service user’s wishes. It is necessary to regularly review communication and team working as best befits the person's needs. Carers are a key component to this.
Resource:
In the last year of life, service users and their families may need access to a complex combination of services across a number of different settings. They should be able to expect the same high level of care regardless of where they are being looked after.
Living in their own home will have been a great achievement and they will naturally want to stay there irrespective of the inadequacies of their care package.
http://www.leedspalliativecare.co.uk/
Network for Palliative Care of People with Learning Disabilities (NPCPLD) work with people who have learning disabilities in health or end of life care.
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A source of education and information only, not intended to replace advice of a
medical doctor, nurse or healthcare practitioner.
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