Care at the end of life
Examples of Support
Advanced symptom management
Reviewing living wills
Managing risks around swallowing and maintaining good nutrition
Managing oral health
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
Care Homes (refer to HD Specialist for guidance on which homes have recent experience of working with HD Families).
Community Nursing (via GPs )
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.
People with symptoms of HD and their families receive good health and social care support that promotes their physical and emotional wellbeing throughout life