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

Death with Dignity – End of Life Care
in Care Homes:
Lucy Botting
Chief Nurse
Vale of York CCG
End of Life Care:
• The majority of people living in a nursing or care home will die
• 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
• Training is needed to help staff build confidence in this area
of practice.
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,
• 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.
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
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‘.
Constituent Parts:
• Do Not Attempt Resuscitation (DNAR);
• Advanced Care Planning (ACP);
• Education and Training.
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.
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
• This plan needs to be agreed with the patient, family, GP and
professionals so all understand wishes for the future.
Identified Critical Areas:
Personalised care;
Dignity and respect;
Making time;
Talking about end-of-life issues;
Relatives’ roles and collaboration;
Staff training and support.

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