Tailoring care to meet individual needs

Simon Jones, Director of Policy and Public Affairs

@simonmdjones

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Voices (survey of the bereaved) 2015Overall quality of care by cause of death in the last 3

months of life

Source: Office for National StatisticsPercentages may not sum to 100 due to rounding.

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Voices (survey of the bereaved) 2015

Source: Office for National Statistics1.Deprivation level is calculated based on the deceased's postcode of usual residence and based on IMD 2010.2.Percentages may not sum to 100 due to rounding.

Overall quality of care by deprivation quintile in the last 3 months of life

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Voices (survey of the bereaved) 2015

Figure 4: Overall quality of care by sex in the last 3 months of life, England, 2015

Source: Office for National Statistics

1.Percentages may not sum to 100 due to rounding.

Overall quality of care by sex in the last 3 months of life

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Prevalence of cancer is growing• Cancer survival has doubled in the UK

over the past 40 years• cancer still causes more than 1 in

every 4 deaths• Mortality rate is decreasing but number

of people dying from Cancer expected to rise:

• 157,000 deaths in 2010 to 193,000 in 2030

• Increase in elderly as proportion of population

• Variations in survivorship across cancer types

• By 2040, older people will account for 77% of all people living with a cancer diagnosis, an increase from 66% in 2015

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Blood and brain cancers

Blood• Shorter periods of time between

diagnosis and death• people with blood cancer who die within

a month of diagnosis are twice as likely to miss out on discussing their preferred place of death

• An analysis of 40,000 deaths from blood or bowel cancer in the UK found that nearly two-thirds (64%) of people with blood cancer died in hospital, compared to less than half (47%) of the people with bowel cancer

• The transition from cure-focused to end of life care can occur very quickly for people with blood cancer which can mean people miss out on palliative care referral and a chance to fully discuss their end of life wishes.

Brain• more than half (55%) hadn’t been given a

choice of end of life care options• almost half (49%) had not been given

appropriate information about end of life care

• Many people living with a brain tumour experience depression and emotional distress

• Speech problems are a common symptom of a brain tumour and, as the illness progresses, people may develop serious barriers to communication, while their intelligence is unaffected.

• People with brain tumours may develop additional medication needs if they have difficulty swallowing.

• difficult behaviour and personality changes• disorientation and confusion, which may

also have a significant impact on social structures

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Issues faced by LGBT people at the end of life

• Anticipating discrimination

• Complexities of religion and LGBT end of life care

• Assumption about identity and family structure

• Varied support networks

• Unsupported grief and bereavement

• Increased pressure on LGBT carers

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Issues faced by people from a BAME background

• Evidence on inequity of provision of palliative care is equivocal

But … • evidence of poor care• Less likely to report they

had received sufficient help and support

• 26% less likely to rate overall care as ‘outstanding’ or ‘excellent’

• 55% less likely to rate care in a care home as ‘outstanding’ or ‘excellent’

• Half as likely to rate care in a hospice as ‘outstanding’ or ‘excellent’

Marie Curie Cardiff and Vale project• Increasing Education

and Awareness ∙ Case Scenarios∙ Changes to policies and

procedures∙ Cultural Calendar∙ Increased bedside

information

• Service changes∙ Quiet room/food/funerals

• 81% increase in use of Marie Curie’s community and in-patient services over a three year period.

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We know that end of life care needs to change

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We know that more people will be dying

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The frailty dilemma

Frailty syndrome requires at least three of the following five characteristics:

• Unintentional weight loss, as evidenced by a loss of at least 10 lbs or greater than 5% of body weight in the prior year;

• Muscle weakness, as measured by reduced grip strength in the lowest 20% at baseline, adjusted for gender and BMI;

• Physical slowness, based on measured time to walk a distance of 15 ft;• Poor endurance, as indicated by self-reported exhaustion; and• low physical activity, as scored using a standardized assessment questionnaire

But we are in danger of treating frailty as a catch all condition

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Helen Lyndon, Nurse Consultant Older People, Clinical Lead Frailty, NHS England, March 2016

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The solutions

• Early diagnosis• Early referral• Specialist support• Better knowledge / skills / understanding by non

specialists• Better communication

• Advocates / care navigators / key workers• Person centred care / co-production

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There is a fundamental difference between treatment and end of life

focussed care. The quality of the former is

ultimately judged by the success of the outcome and latter by the

experience of the care.

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mariecurie.org.uk/policy/publications