Death with Dignity – End of Life Care in Care Homes:

1. Death with Dignity – End of Life Care in Care Homes: Lucy Botting Chief Nurse Vale of York CCG

2. End of Life Care: • The majority of people living in a nursing or care home will die there. • Better end-of-life care in homes is one of the National End of Life Care Programme’s critical success factors. • Good-quality end-of-life care involves an individualised approach and making time for residents. • Staff need to develop good working relationships with relatives. • Training is needed to help staff build confidence in this area of practice.

3. National Statistics: • Nursing and residential care homes play an important role in the care of older people at the end of life. Together, they provide final care for 16% of the population, rising to 30% of those aged over 85. Each year an average of 41,969 people die in a nursing home and 32,138 in a residential care home (National End of Life Care Intelligence Network, 2010). • Around 24,000 more people died at home or in care homes in 2012 compared to four years ago, showing a rise in the number of people who are dying in a place of their choice (2012). This is a significant improvement, but there is still more work to do.

4. Why is this important? • Choice: Death in the place of a persons choice is critical to good EoLC. • Why is this important for dementia? • The number of people in the UK with dementia is increasing, with 1 in 3 people over the age of 65 now dying with dementia. Despite there being no cure, only 18% of people realise dementia is a terminal illness. • Dementia and its progression to death can be very distressing for family members . • Dementia affects almost every one of us. Greater awareness is needed around how it affects peoples’ lives, from diagnosis until the very end of life.

5. National Strategy: • The End of Life Care Strategy (Department of Health, 2008) suggests, 'although every individual may have a different idea about what would, for them, constitute a "good death", for many this would involve: • being treated as an individual, with dignity and respect; • being without pain and other symptoms; • being in familiar surroundings; • being in the company of close family and/or friends‘.

6. Constituent Parts: • Do Not Attempt Resuscitation (DNAR); • Advanced Care Planning (ACP); • Education and Training.

7. Do Not Resuscitate: • CQC published its review on the provision of health care to those in care homes in March 2012. • It found that 30% of nursing homes did not have a “Do Not Attempt Resuscitation” (DNAR) policy in place. • Where a DNAR policy was in place, most staff (76%) were aware of the policy, although very few staff (37%) had received formal training in the policy.

8. Advanced Care Planning – Wishes and Dreams: • Advance Care (ACP) is important. It is a structured discussion with patients and their families or carers about their wishes and thoughts for the future and a respect for their wishes in death. • Although such discussions may have occurred informally before, it was not occurring with all relevant people or being communicated to others. So the offer of an advance care plan for every appropriate person is now recognised as a key part of good care. • Advance Care planning is key means of improving care for people nearing the end of life and of enabling better planning and provision of care, to help them live and die in the place and the manner of their choosing. The main goal in delivering good end of life care is to be able to clarify peoples’ wishes, needs and preferences and deliver care to meet these needs. • This plan needs to be agreed with the patient, family, GP and professionals so all understand wishes for the future.

9. Identified Critical Areas: • Personalised care; • Dignity and respect; • Making time; • Talking about end-of-life issues; • Relatives’ roles and collaboration; • Staff training and support.

10. Questions?