End of Life Care in General Practice Dr Katherine Teare GP Educator Fellow

Content Financial support and benefits Paperwork Decision making in terminal care Symptom control

Benefits for the Terminally Ill Attendance Allowance or Personal Independence Payment Disability Living Allowance Employment and Support Allowance Carers Allowance

Attendance Allowance Need care, are disabled and are aged 65+ Lived in GB for 2 of past 3 years, usually resident Usually need to have needed looking after for past 6 months, but not if terminally ill Considers how much help you need, doesn’t consider whether you actually get help Not usually means tested Higher rate £79.15 per week, lower rate £53 per week

Personal Independence Payment Tax free benefit for those aged with care needs or difficulty getting about Replaced DLA for those in this age group Benefit for those with long term illness or disability Lived in GB for 2 of past 3 years, usually resident Needed looking after for 3 months before claim, unless terminally ill Payments for care (at £53 or per week) and/or mobililty (£20.55 or £54.05 per week) Not usually means assessed

Disability Living Allowance For children aged under 16 Child must have needed looking after for 3 months prior to claim, unless terminally ill Must need more help than a child without illness or disability and/or difficulty walking Care rates Lowest – help for some of day or night (£21/week) Middle – frequent help/supervision during day or supervision at night (£53/week) Highest – terminally ill or help/supervision thoughout day and night (£79.15/week) Mobility rates Lowest – Child can walk but needs help/supervision outside (£21/week) Highest – can’t walk/short distance or is blind or deaf (£55.25pw)

Employment & Support Allowance Aged under 65 and problems working because of illness or disability Entitlement usually dependent on NI record Assessment phase rate – first 13 weeks until Work Capability Assessment Main phase rate – from week 14 After assessment Either Work Related Activity Group – expected to do work related interviews Or Support Group – illness has severe effect on ability to work

Carers Allowance If you are over 16 and look after someone who is ill or disabled in their own home Spend at least 35hrs/week caring for them Cannot claim if earn >£100pw after tax Cannot claim if in full time education Must have lived in GB for 2 of last 3 years Person cared for must be receiving Attendance Allowance or Care component of DLA or Constant attendance allowance(…) £59.75 per week

DS1500 Factual information – prognosis not required If requested by patient/representative and you consider they have terminal illness Needs to contain details of patients Diagnosis, whether patient aware Current/proposed treatment Brief clinical information

Nursing care at home Request assessment for individual District nurse usually assess persons needs and decide what support required Social care, district nursing care, hospice at home and Palliative care nurses OT –adaptations DNs – hospital beds, pressure relieving mattresses

Fitness to Make Decisions Mental Capacity (2005 Act) Ability to take actions affecting daily life and/or make more major decisions Decision specific Understand information and consequences Retain informtaion Weigh up information Communicate decision

Lasting Power of Attorney Draw up any time when person has capacity, 2 types Must be registered with Office Public Guardian to have legal standing Property and affairs LPA – money, can use when individual retains capacity Personal welfare LPA – decisions about healthcare and welfare, only active when individual lacks capacity. Advance decision – statement about wishes regarding medical treatment if incapable, legally binding

Symptomatic relief Anticipatory care Stop unnecessary medication Establish patients concerns and anxieties Dorothy House handbook Just in case medications Management plan clear with all agencies informed incl OOH