Care at the end of life
Examples of Support
Reviewing living wills
Managing risks around swallowing and maintaining good nutrition
Managing oral health
Maintaining communication
Recognising and addressing pain and distress
Recognising and addressing depression/anxiety
Assessment for specialist equipment (e.g. seating, postural control, wheelchairs)
Ensuring emotional support for families & recognising their expert knowledge of the client
Spiritual needs of person/ family
Appropriate setting in line with client choice
Key Services and People
Scottish Huntington’s Association Youth Project (SHAYP) / Specialist Youth Advisors
Care Homes (refer to HD Specialist for guidance on which homes have recent experience of working with HD Families).
Clinical psychology/Neuropsychology (through referral from GP or HD Clinical Lead )
Community Nursing (via GPs )
Dietetics ( Highland , Argyll & Bute )
Faith based organisations ( see Highland Chaplaincy Services , Argyll & Bute Chaplaincy Services , Interfaith Scotland )
Hospice/ Palliative Care Services
Occupational Therapy ( Highland , Argyll & Bute )
Pharmacy ( Highland , Argyll & Bute )
Wheelchair & Specialist Seating Services ( Highland , Argyll & Bute )
Integrated Multi Agency Arrangements, Referral Pathways and Resources
There are clear links to specialist community palliative care services who can provide input and advice when required for people with HD who have complex needs.
Hospice services are available and there are clear criteria for referral.
GPs are aware and involved in end of life care and act as the responsible medical officer when appropriate.
Relevant faith organisations are involved, in line with client’s belief system and with their consent
GP to ensure that the Key Information Summary (KIS) is updated following any significant change or clinical deterioration to enable relevant clinical information to be shared with health professionals providing care during the out of hours period.
Standards
End of life care is consistent with the Strategic Framework for Action on Palliative Care and End of Life Care , Good Life, Good Death, Good Grief , National DNACPR Policy, GMC Guidance on End of Life Care , Developing Scottish Government Policy on Funeral Poverty