End-of-life care in Cornwall: Perceptions and experience Natalie Swann Research Manager Amanda Stratford Chief Executive Officer May 2018
Healthwatch Cornwall commissioned a piece of independent research with local people. This research supports the End of Life Strategy Board’s work towards Priority One in the work plan by building a picture of public understanding and experience of end of life, as well as preferences for support.
665 people in Cornwall Recruitment took place online through a local panel, social media, and Healthwatch’s own promotional channels in April 2018 9 (1%) with a terminal illness 385 (58%) with a family member with a terminal illness 285 (43%) carers of someone with a terminal illness 361 (54%) supporters of someone with a terminal illness 205 (31%) people who had experienced a recent bereavement 159 (25%) people with no experience of bereavement or terminal illness
This presentation covers four different groups of people The public Terminal illness Carers and Bereaved supporters All people who took People with a People who consider People who have part in the survey terminal diagnosis themselves a carer experienced a (including those with and family of people (paid or unpaid) or a bereavement in their terminal illness and who have had a ‘supporter’ immediate family in bereavement terminal diagnosis the last two years experience) Section 1: Section 2: Section 3: Section 4: Perceptions of end- Experience of Experience of caring Experience of of-life care terminal illness and and supporting those bereavement end of life care with terminal illness
1. Perceptions of end-of-life care
The public ?% of people have spoken to their family and friends about their preferences for end-of-life care 41% 4% ?% of people have an end-of-life care plan 11% ?% of people have an advance directive Do you have an Advance Directive? Have you ever spoken to your family and friends about your preferences for your end-of-life care? Do you have an end-of-life care plan? Base: 665 (all participants)
The public Understanding of many of the terms used in EOL care varies: particularly low for technical terms Proportion of the public selecting each level of understanding of each term Prognosis 3% 3% 22% 73% Power of attorney 3% 3% 25% 69% Do Not Attempt Cardiopulmonary Resuscitation 5% 3% 23% 68% (DNACPR) Palliative 5% 7% 23% 65% Clinician 6% 7% 31% 56% End-of-life care plan 6% 9% 33% 52% Living Will 7% 16% 34% 43% Artificial nutrition and hydration 17% 12% 33% 39% Legal proxy 19% 22% 33% 26% Treatment escalation plan 32% 16% 26% 26% Advance directive or statement 36% 18% 22% 24% I have not heard of this term I have heard of this term but do not know what it means I have heard this term and have a general idea of what it means I have heard this term and have a good understanding of what it means We would like you to think about how well you understand some of the words and terms that are used in end-of-life care. Base: 665 (all participants)
The public Most of the public know there are options available to choose from… Proportion of the public with knowledge of end of life care options I do not think there are any 6% options for me to choose from 22% I don't know what options are available but I know there are 72% options I know what options are available What options do you think are available to people in Cornwall for end-of-life care? Base: 665 (all participants) Proportion of those who say they know what options are available selecting each of the following options In a hospice 90% At home with family carers 85% In a care home 81% 81% At home with nursing care 75% In a hospital At home with care from hospice staff 65% What options do you think are available to people in Cornwall for end-of-life care? Base: 478 (all participants who stated they knew which options are available for end of life care)
The public The clear preference for end-of-life care is to be at home Proportion of the public selecting each end-of-life care option as their first, second, or third preference 1st preference 2nd preference 3rd preference 21% 15% 27% 17% 21% 39% 23% 12% 40% 21% 7% 16% 15% At home with At home with At home with In a hospice Something In a care In a family care from nursing care else home hospital carers hospice staff From these option, which would be your preference for your own end-of-life care? Base: 665 (all participants)
The public Alignment with Ambitions for Palliative and End of life Care: access and coordination appear to be areas for improvements Proportion of the public who agree or disagree that their expectations or experience of care is reflected in each ambition statement 01 Each person is seen as an individual 7% 15% 17% 27% 28% 7% 02 Each person gets fair access to care 10% 23% 17% 19% 20% 10% 03 Maximising comfort and wellbeing 7% 13% 17% 27% 28% 7% 04 Care is coordinated 9% 18% 18% 25% 20% 10% 05 All staff are prepared to care 5% 13% 18% 28% 28% 8% 06 Each community is prepared to help 6% 15% 30% 20% 13% 16% Strongly disagree Disagree Neither agree or disagree
The public The best possible end-of-life care is dignified and pain-free People in Cornwall are most likely to say use words like ‘dignity’ (172), ‘pain - free’ (156), ‘peace’ (132), and ‘care’ (117) to describe their best possible end -of-life care. Words used by the public to describe the best possible end of life care (word size is proportional to the number of mentions) If you were to think about what the best possible end-of-life care looks like, what 3 words would you use to describe it? Base: 620 (all participants who provided an answer) The words shown received 3 or more mentions and are proportional in size to the number of mentions
Terminal illness Words used to describe the reality of end-of-life Bereaved care by those with experience are mixed People in Cornwall most often describe their experience of end-of- life care with words like ‘care’ (45 mentions), ‘dignity’ (40), and ‘peace (36). However, there are large numbers of more negative words, such as ‘pain’ (35), ‘sad’ (32), and ‘stress’ (27). Words used by those with experience of end-of-life care or bereavement to describe personal experience of end of life care (word size is proportional to the number of mentions) Thinking about your personal experience of end-of-life care, what 3 words would you use to describe it? Base: 392 (all participants with experience of terminal illness or bereavement) The words shown received 3 or more mentions and are proportional in size to the number of mentions
2. Experience of terminal illness
Terminal illness Diagnosis is most often delivered by a hospital doctor Proportion of terminal diagnoses that were delivered by each type of person 63% 13% 9% 8% 1% 0% A hospital A GP I don’t know / A family A hospital Someone else A district or A friend doctor do not member nurse community remember nurse Thinking back, who told you/your family member that your/their illness is terminal? Base: 392 (People with a terminal diagnosis or family members of someone who has had a terminal diagnosis)
Terminal illness ‘Satisfaction’ with diagnosis is variable: 21% dissatisfied – but only 40% satisfied Proportion of those with experience of terminal illness who are satisfied or dissatisfied with how their/their family members ’ d iagnosis was delivered 12% 9% 17% 27% 13% 17% Very dissatisfied Dissatisfied Neither satisfied or dissatisfied Satisfied Very satisfied I don’t know / do not remember On a scale of 1 to 5, how satisfied or dissatisfied are you with the way your/your family members’ diagnosis was delivered? Base: 392 (People with a terminal diagnosis or family members of someone who has had a terminal diagnosis)
Almost a third of those with a terminal illness Terminal illness disagreed that they understood what they were told about their diagnosis Proportion of those with experience of terminal illness agreeing or disagreeing with each of the statements relating to their/their family members diagnosis I/my family member understood what I was told 10% 21% 12% 30% 20% 8% about my/their diagnosis I/my family member had the opportunity to ask 6% 10% 9% 40% 25% 11% questions I/my family member received the support I/they 6% 12% 10% 36% 28% 9% needed when I/they were diagnosed Strongly disagree 0% 20% 40% 60% 80% 100% Disagree Neither agree or disagree Agree Strongly agree I don’t know/not applicable On a scale of 1 to 5, how satisfied or dissatisfied are you with the way your/your family members’ diagnosis was delivered? Base: 392 (People with a terminal diagnosis or family members of someone who has had a terminal diagnosis)
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