Care at the end of life
Examples of Support
Anticipatory care planning
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
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 Service / Specialist Youth Advisors
Hospice/ Palliative Care Service (see Dumfries & Galloway HSCP Palliative Care or Scottish Partnership for Palliative Care )
Speech & Language Therapy
Dietetics
Physiotherapy
Occupational Therapy
Clinical Psychology / Neuropsychology
Pharmacy / Prescribing Support Team
District Nurses (via GP)
Faith based organisations (see Spiritual Care Support or Dumfries & Galloway Interfaith Forum)
Seating, postural control & wheelchair services
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. HD Clinical Lead & HD Specialists can refer to specialist community palliative care services who can provide required support for people with complex needs.
Hospice (see Dumfries & Galloway HSCP Palliative Care or Scottish Partnership for Palliative Care ) placements are available and there are good relations with HD Lead Clinician and HD Specialists allowing smooth referral.
GP 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