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A Good Death Research Presentation Produced for: Creating a Compassionate Community Thursday 18 th March 2010 A Good Death Research Presentation Produced.

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Presentation on theme: "A Good Death Research Presentation Produced for: Creating a Compassionate Community Thursday 18 th March 2010 A Good Death Research Presentation Produced."— Presentation transcript:

1 A Good Death Research Presentation Produced for: Creating a Compassionate Community Thursday 18 th March 2010 A Good Death Research Presentation Produced for: Creating a Compassionate Community Thursday 18 th March 2010

2 Background Methodology Local vs. National Picture Opinions on the Charter Communication and implementation Summary of key findings Agenda – Key Findings from the Survey

3 Background

4 Aim: – To understand whether the draft Charter is understandable, accessible, meaningful and deliverable More specific objectives – Build on existing regional public perception findings – Capture public and stakeholder views Objectives

5 Internal NHS and Social Care PEC’s, Palliative care and Social care staff, Directors of Social Care and CEO’s of NHS Face-to-face in- depth interviews CATI (semi structured) 24 External Service Providers Specialist Palliative Care Providers, Training Providers Face-to-face in- depth interviews CATI (semi structured) 10 Community Faith, Voluntary, Community, Children & Young People Organisations Face-to-face in- depth interviews CATI (semi structured) 10 Other Stakeholders Overview and Scrutiny Committee CATI(semi structured) 4 Methodology - Stakeholders Public incorporated over several strands …

6 Face to face Interviews Patients and Carers 24 Online Available to public and stakeholder 1452 On-street Representative quota sample 1120 Focus Groups Age Age Methodology – The Public

7 Local vs. national picture

8 Notes on sample On-street Conducted early October 2009 (Tuesday 6 th – Sunday 18 th ) - various locations across the north east All with members of the general public Quotas set to be representative of the north east region 1120 interviews in total 1956 refusals over the fieldwork period; 74% too busy 13% not comfortable 5% don’t conduct research 4% gave other reasons 4% abandoned the survey midway after realising content On-street Conducted early October 2009 (Tuesday 6 th – Sunday 18 th ) - various locations across the north east All with members of the general public Quotas set to be representative of the north east region 1120 interviews in total 1956 refusals over the fieldwork period; 74% too busy 13% not comfortable 5% don’t conduct research 4% gave other reasons 4% abandoned the survey midway after realising content

9 Notes on sample Online Open from 5 th October – 13 th December responses in total (142 from outside the region were excluded) Combined (online and on-street) total of 2,430 responses All data weighted to be representative of the north east region National Survey data (commissioned by Dying Matters/NCPC) conducted via their Omnibus Survey - Natcen July - September 2009 Online Open from 5 th October – 13 th December responses in total (142 from outside the region were excluded) Combined (online and on-street) total of 2,430 responses All data weighted to be representative of the north east region National Survey data (commissioned by Dying Matters/NCPC) conducted via their Omnibus Survey - Natcen July - September 2009 Total (weighted) General public580 Businesses60 Voluntary organisations54 Health care professionals615 Total1310

10 Talking about death Overall, those in the north east are slightly less comfortable when talking about death (19%) compared to national average (17%)

11 Experience of death Mixed views on whether children under 12 should attend funerals - One third felt it depended on the child (33%), one quarter (25%) felt they shouldn’t (more likely to be on- street respondent) Just under a quarter felt children should attend (24%) and the remainder felt it depended on who had died Health care professionals, more likely to agree with attendance (33%) than general public (21%) and older (75+) also less likely to agree with attendance Mixed views on whether children under 12 should attend funerals - One third felt it depended on the child (33%), one quarter (25%) felt they shouldn’t (more likely to be on- street respondent) Just under a quarter felt children should attend (24%) and the remainder felt it depended on who had died Health care professionals, more likely to agree with attendance (33%) than general public (21%) and older (75+) also less likely to agree with attendance 88% on- street, 94% online 80% online As expected, younger less likely 40% experienced a death in last 12 months

12 Best place to die Majority would like to die at home (58%). Of those, approx 38% would still prefer to do so even if they did not have sufficient support from family, friends or the social and medical professionals (similar to national) When compared to national figures, more would prefer to die in hospital or a hospice Majority would like to die at home (58%). Of those, approx 38% would still prefer to do so even if they did not have sufficient support from family, friends or the social and medical professionals (similar to national) When compared to national figures, more would prefer to die in hospital or a hospice

13 End of life care Most important thing for end of life care is to be pain free Mostly general public and DE’s More likely to be 65+ More likely to be younger (16-24)

14 End of life care Next most important thing is to be with family or friends, same as national

15 Your wishes The majority (61%) had not discussed their wishes, lower than national average Dying with dignity was the area discussed most (22%) The majority (61%) had not discussed their wishes, lower than national average Dying with dignity was the area discussed most (22%) Majority Older (65+) respondents and health care professionals discussing more things, more often. Lower SEGs (DE) less likely

16 Your wishes For the majority, death seems a long way off or they are too young to discuss death More people in the north east feel others don’t want to talk to them about death For the majority, death seems a long way off or they are too young to discuss death More people in the north east feel others don’t want to talk to them about death 55+ most uncomfortable 16% are 75+! (national 20%) 30% are More likely to be AB’s Mainly % are 16-34

17 Other – verbatim “The subject has never arisen. I don't think people are confident enough to discuss it cold.” “I have never thought about broaching the subject with others.” “Feels strange to bring it up 'out of the blue.‘” “It has never come up. I am a single parent and would not want to discuss this with my children (teenagers).” “I feel it would be too upsetting for my relatives to talk about my death.” “Not thought about it up till now.” “Haven't decided what I want yet.” “It's not something that I have discussed with anyone, not because I don't feel its important, probably because everyday life is so busy.” “I can talk about death but not my own.” “My family would feel uncomfortable with me talking about my death.”

18 Planning for death Respondents were either ‘very ‘or ‘fairly’ confident that they would be able to plan their funeral arrangements (77%) and get the right sort of care and support (68%) However, over a third were either ‘not very ‘or ‘not at all’ confident about being able to plan their financial support (38%) Respondents were either ‘very ‘or ‘fairly’ confident that they would be able to plan their funeral arrangements (77%) and get the right sort of care and support (68%) However, over a third were either ‘not very ‘or ‘not at all’ confident about being able to plan their financial support (38%) year olds less confident about financial support and funeral arrangements

19 Planning for death The majority (70%) of respondents do not have any plans for their end of life care year olds least likely to have plans (94%)

20 Planning for death Making death easier for family members (62%) was the key reason to start planning for death Higher for health care professionals (72%) than general public (58%)

21 Planning for death Almost half in the north east (45%) do not have a will or organ donor card 55 + more likely to have a will year olds less likely to have none (81%) and DE’s 40% of year olds

22 Planning for death Approximately four in ten (41%) people in the north east would prefer information from a doctor or GP

23 Local vs. national summary – significant difference QuestionNationalNorth East Experienced death in last 5 years62%68% Most important for end of life care - pain free23%34% Do you have an organ donor card/registered as donor - Yes26%31% Prefer to receive info from Doctor/ GP31%41% Best place to die - Home70%58% No written plans78%70% Discussed wishes - none of these71%61% Why not discussed wishes - death feels a long way off45%37% Very/fairly confident – Planning right care & support82%68% Very/fairly confident – Planning financial support78%62% Very/fairly confident - Plan your funeral arrangements85%77% Questions NationalNorth East

24 QuestionNationalNorth East Very/fairly uncomfortable talking about death17%19% Want to be told if terminally ill88%90% Attended funeral94% Planning to make death easier for family62% Have a will38% Seen a dead body69%66% Local vs. national summary – no significant difference Questions NationalNorth East

25 Opinions on The Charter

26 Should a Charter such as this be developed?

27  YES!

28 Strong stakeholder support to open conversation about death and dying “I think we’ve got to change the profile. We’ve got to get it out. I think the only way to make it different and to give more people the opportunity to have control over what happens to them, and how it happens, and where it happen, and what they want, is to make it something that people have lost the fear about discussing.” (GP) “I do, because it raises the profile of the issue and it gets people talking and it gets people thinking. Even if they don’t agree with it, it’s generated some debate and awareness-raising.” (Director of Adult Social Care Services) Should a Charter such as this be developed? “I felt quite positive and I hope this addresses the cultural issues that I referred to earlier. I think there is a general inability to talk about death because of the lack of knowledge but with these resources, that will help.” (Professional executive meeting)

29 Strong stakeholder support to open conversation about death and dying Also felt could work well with Advanced Care Planning and Marie Curie Delivering Choice Should a Charter such as this be developed?

30 Strong stakeholder support to open conversation about death and dying and used to ensure standards Also felt could work well with Advanced Care Planning and Marie Curie Delivering Choice Patient/carer and general public support in relation to ensuring good quality care and providing a frame of reference and something to use as a checklist... “I mean, that relates to exactly how I hope things will happen. I mean, it would be nice to think that would be put across to everyone.” (Patient) “Yes it’s always good isn’t it, because it is a framework that people can refer to – especially people who are unhappy, then it gives you a frame of reference.” (Carer) “It is comprehensive, absolutely, it is what should happen. Basically it is an idiots guide to helping someone pass away and that’s the way it should be.” (Alnwick group) Should a Charter such as this be developed?

31 The title: “A Good Death” Some discomfort surrounding title Good for general public and health / social care professionals Opens conversation, normalises, hard hitting May not sit comfortably with those going through the experience “There is no such thing as a Good Death … There is nothing anybody can do to make it better really, but there are a lot of things they can do to make it worse and thats what they have to avoid. In fact I think I could have saved an hour of your time, that is the crux of it, just not to make it worse.” (Bereaved Carer) “From a professional perspective, ‘A Good Death’ means exactly what it says. Whether that terminology is too hard-hitting in terms of a Charter that should be shared with people who are going through that process is a judgement call..” (Director of Social Services)

32 The title: “A Good Death” Some discomfort surrounding title Good for general public and health / social care professionals Opens conversation, normalises, hard hitting May not sit comfortably with those going through the experience “There is no such thing as a Good Death … There is nothing anybody can do to make it better really, but there are a lot of things they can do to make it worse and thats what they have to avoid. In fact I think I could have saved an hour of your time, that is the crux of it, just not to make it worse.” (Bereaved Carer) “From a professional perspective, ‘A Good Death’ means exactly what it says. Whether that terminology is too hard-hitting in terms of a Charter that should be shared with people who are going through that process is a judgment call.” (Director of Social Services)

33 The title: “A Good Death” Some discomfort surrounding title Good for general public and health / social care professionals Opens conversation, normalises, hard hitting May not sit comfortably with those going through the experience “There is no such thing as a Good Death … There is nothing anybody can do to make it better really, but there are a lot of things they can do to make it worse and that's what they have to avoid. In fact I think I could have saved an hour of your time, that is the crux of it, just not to make it worse.” (Bereaved Carer) “From a professional perspective, ‘A Good Death’ means exactly what it says. Whether that terminology is too hard-hitting in terms of a Charter that should be shared with people who are going through that process is a judgment call.” (Director of Social Services)

34 Strong agreement online (4.4 out of 5) that a Charter such as this should be developed Majority on-street (64%) think a Charter would be quite or extremely valuable 88% think a Charter would help them feel more in control or better informed if they were dying (however, less so for those over 75 (63%)) Strong agreement online (4.4 out of 5) that a Charter such as this should be developed Majority on-street (64%) think a Charter would be quite or extremely valuable 88% think a Charter would help them feel more in control or better informed if they were dying (however, less so for those over 75 (63%)) Should a Charter such as this be developed? All happy with tone and language, felt to be understandable by all Charter generally covered everything raised as important for a good death All happy with tone and language, felt to be understandable by all Charter generally covered everything raised as important for a good death

35 The detail – quantitative perspective Overall Top 4 (rating 4.8 out of 5) 1. To be treated with dignity, respect and privacy, according to our wishes. 2.To have clear, honest and tailored information and good communication throughout illness or frailty. 3.To have clear information about who to contact around the clock and seven days a week if advice or care is needed at home. 4.To receive the best care and support with any social difficulties. Overall Top 4 (rating 4.8 out of 5) 1. To be treated with dignity, respect and privacy, according to our wishes. 2.To have clear, honest and tailored information and good communication throughout illness or frailty. 3.To have clear information about who to contact around the clock and seven days a week if advice or care is needed at home. 4.To receive the best care and support with any social difficulties. Overall Bottom 4 (rating 4.3 – 4.5 out of 5) 14.To be told clearly and compassionately the reality that death is coming. 15.To be provided, where possible, with a realistic prediction about how long illness may last, and information about what can be expected, to allow time to plan. 16.To receive appropriate emotional or spiritual support, with our beliefs and values honored. 17.To see death acknowledged as a part of life. Overall Bottom 4 (rating 4.3 – 4.5 out of 5) 14.To be told clearly and compassionately the reality that death is coming. 15.To be provided, where possible, with a realistic prediction about how long illness may last, and information about what can be expected, to allow time to plan. 16.To receive appropriate emotional or spiritual support, with our beliefs and values honored. 17.To see death acknowledged as a part of life.

36 The Charter – Respect Respect: To see death acknowledged as a part of life. To be treated with dignity, respect and privacy, according to our wishes. To be supported and cared for in a positive and enabling atmosphere, in a way which values each individual and the contribution we may still wish to make to our family, job or social network. To have clear, honest and tailored information and good communication throughout illness or frailty. Respect: To see death acknowledged as a part of life. To be treated with dignity, respect and privacy, according to our wishes. To be supported and cared for in a positive and enabling atmosphere, in a way which values each individual and the contribution we may still wish to make to our family, job or social network. To have clear, honest and tailored information and good communication throughout illness or frailty.

37 Overall rating = 4.7 The Charter – Respect

38 Respect: To see death acknowledged as a part of life. To be treated with dignity, respect and privacy, according to our wishes. To be supported and cared for in a positive and enabling atmosphere, in a way which values each individual and the contribution we may still wish to make to our family, job or social network. To have clear, honest and tailored information and good communication throughout illness or frailty. Respect: To see death acknowledged as a part of life. To be treated with dignity, respect and privacy, according to our wishes. To be supported and cared for in a positive and enabling atmosphere, in a way which values each individual and the contribution we may still wish to make to our family, job or social network. To have clear, honest and tailored information and good communication throughout illness or frailty. “Yes I think that is exactly what we need. I think one has to acknowledge death as a part of life. It is there and it is coming.” (Patient) Important to open up conversation

39 The Charter – Respect Respect: To see death acknowledged as a part of life. To be treated with dignity, respect and privacy, according to our wishes. To be supported and cared for in a positive and enabling atmosphere, in a way which values each individual and the contribution we may still wish to make to our family, job or social network. To have clear, honest and tailored information and good communication throughout illness or frailty. Respect: To see death acknowledged as a part of life. To be treated with dignity, respect and privacy, according to our wishes. To be supported and cared for in a positive and enabling atmosphere, in a way which values each individual and the contribution we may still wish to make to our family, job or social network. To have clear, honest and tailored information and good communication throughout illness or frailty. “Yes I think that is exactly what we need. I think one has to acknowledge death as a part of life. It is there and it is coming.” (Patient) Important to open up conversation Important to acknowledge respect “I think the second point of respect is absolutely crucial, that is so important. I am so glad to see that is written down because I think that is something people just assume they will get.” (Durham focus group)

40 The Charter – Respect Respect: To see death acknowledged as a part of life. To be treated with dignity, respect and privacy, according to our wishes. To be supported and cared for in a positive and enabling atmosphere, in a way which values each individual and the contribution we may still wish to make to our family, job or social network. To have clear, honest and tailored information and good communication throughout illness or frailty. Respect: To see death acknowledged as a part of life. To be treated with dignity, respect and privacy, according to our wishes. To be supported and cared for in a positive and enabling atmosphere, in a way which values each individual and the contribution we may still wish to make to our family, job or social network. To have clear, honest and tailored information and good communication throughout illness or frailty. “Yes I think that is exactly what we need. I think one has to acknowledge death as a part of life. It is there and it is coming.” (Patient) Important to open up conversation Important to acknowledge respect “I think the second point of respect is absolutely crucial, that is so important. I am so glad to see that is written down because I think that is something people just assume they will get.” (Durham focus group) Privacy also important, when discussing condition and during hospital stays

41 The Charter – Respect Respect: To see death acknowledged as a part of life. To be treated with dignity, respect and privacy, according to our wishes. To be supported and cared for in a positive and enabling atmosphere, in a way which values each individual and the contribution we may still wish to make to our family, job or social network. To have clear, honest and tailored information and good communication throughout illness or frailty. Respect: To see death acknowledged as a part of life. To be treated with dignity, respect and privacy, according to our wishes. To be supported and cared for in a positive and enabling atmosphere, in a way which values each individual and the contribution we may still wish to make to our family, job or social network. To have clear, honest and tailored information and good communication throughout illness or frailty. Jargon Enabling atmosphere,’ I do not know what ‘enabling atmosphere’ is.” (Director of Social Services) Under the ‘Respect’ one, the third bullet point, ‘supported and cared for in a positive and enabling atmosphere’, I think I’d know what that means, but I don’t know if everybody else would.” (Director of Social Services)

42 The Charter – Time to plan Time to plan: To be told clearly and compassionately the reality that death is coming. To be provided, where possible, with a realistic prediction about how long illness may last, and information about what can be expected, to allow time to plan. To be given the opportunity to make a plan for our care in advance which takes account of our wishes and to have that respected by health and social care services. Time to plan: To be told clearly and compassionately the reality that death is coming. To be provided, where possible, with a realistic prediction about how long illness may last, and information about what can be expected, to allow time to plan. To be given the opportunity to make a plan for our care in advance which takes account of our wishes and to have that respected by health and social care services.

43 Overall rating = 4.5 The Charter – Time to plan

44 Time to plan: To be told clearly and compassionately the reality that death is coming. To be provided, where possible, with a realistic prediction about how long illness may last, and information about what can be expected, to allow time to plan. To be given the opportunity to make a plan for our care in advance which takes account of our wishes and to have that respected by health and social care services. Time to plan: To be told clearly and compassionately the reality that death is coming. To be provided, where possible, with a realistic prediction about how long illness may last, and information about what can be expected, to allow time to plan. To be given the opportunity to make a plan for our care in advance which takes account of our wishes and to have that respected by health and social care services. The Charter – Time to plan “Not everybody wants to be told clearly and compassionately the reality that death is coming. Not everybody wants that.” (Care home manager) “It doesn’t mean the person wants to know. I know what you are saying, it would be nice to be able to do the things that you want to do, but you would still be counting the days down wouldn’t you? I wouldn’t want to be counting the days down, I look forward…” (Focus group) Most commonly raised point Not everyone wants to know … CHOICE OF KEY IMPORTANCE Also choice as to whether they want their family to know also is important Most commonly raised point Not everyone wants to know … CHOICE OF KEY IMPORTANCE Also choice as to whether they want their family to know also is important

45 Time to plan: To be told clearly and compassionately the reality that death is coming. To be provided, where possible, with a realistic prediction about how long illness may last, and information about what can be expected, to allow time to plan. To be given the opportunity to make a plan for our care in advance which takes account of our wishes and to have that respected by health and social care services. Time to plan: To be told clearly and compassionately the reality that death is coming. To be provided, where possible, with a realistic prediction about how long illness may last, and information about what can be expected, to allow time to plan. To be given the opportunity to make a plan for our care in advance which takes account of our wishes and to have that respected by health and social care services. The Charter – Time to plan “Not everybody wants to be told clearly and compassionately the reality that death is coming. Not everybody wants that.” (Care home manager) “It doesn’t mean the person wants to know. I know what you are saying, it would be nice to be able to do the things that you want to do, but you would still be counting the days down wouldn’t you? I wouldn’t want to be counting the days down, I look forward…” (Focus group) Most commonly raised point Not everyone wants to know … CHOICE OF KEY IMPORTANCE Also choice as to whether they want their family to know also is important Most commonly raised point Not everyone wants to know … CHOICE OF KEY IMPORTANCE Also choice as to whether they want their family to know also is important Opportunity implies choice which is good

46 The Charter – Time to plan “I had somebody who was what they call ‘cheyne-stokeing’ which is irregular respiration which is almost always a harbouring of death. He was totally unconscious. … The whole team had been convinced he was dying. He’s got cancer, but he happened to have an infection which they did eventually treat. You can’t tell. There are loads of things which mimic dying. “ (Palliative Care Consultant) “You get caught out all of the time, so that’s actually really hard, practically speaking, to be able to get that right... When are they going to have that hiccup which is the final one? We just don’t know. It’s really hard, yet it’s so important.“ (GP) Time to plan: To be told clearly and compassionately the reality that death is coming. To be provided, where possible, with a realistic prediction about how long illness may last, and information about what can be expected, to allow time to plan. To be given the opportunity to make a plan for our care in advance which takes account of our wishes and to have that respected by health and social care services. Time to plan: To be told clearly and compassionately the reality that death is coming. To be provided, where possible, with a realistic prediction about how long illness may last, and information about what can be expected, to allow time to plan. To be given the opportunity to make a plan for our care in advance which takes account of our wishes and to have that respected by health and social care services. It is very difficult to get it right!

47 The Charter – Care Care: To have access to end of life care in the location we choose. If the choice is at home, then every effort should be made to support this. To have a named key worker who will organise and coordinate care, including where this cuts across organisational boundaries. To have clear information about who to contact around the clock and seven days a week if advice or care is needed at home. To be given every opportunity to take part in decisions which affect care. If the person who is dying is unable to do this, then someone close to them should be allowed to speak for them. To receive speedy, practical help at home (including care homes) for the end of life. To receive the best care and support with any social difficulties. To have control over any physical pain or emotional distress if they occur. Care: To have access to end of life care in the location we choose. If the choice is at home, then every effort should be made to support this. To have a named key worker who will organise and coordinate care, including where this cuts across organisational boundaries. To have clear information about who to contact around the clock and seven days a week if advice or care is needed at home. To be given every opportunity to take part in decisions which affect care. If the person who is dying is unable to do this, then someone close to them should be allowed to speak for them. To receive speedy, practical help at home (including care homes) for the end of life. To receive the best care and support with any social difficulties. To have control over any physical pain or emotional distress if they occur.

48 The Charter – Care Overall rating = 4.7

49 The Charter – Care Care: To have access to end of life care in the location we choose. If the choice is at home, then every effort should be made to support this. To have a named key worker who will organise and coordinate care, including where this cuts across organisational boundaries. To have clear information about who to contact around the clock and seven days a week if advice or care is needed at home. To be given every opportunity to take part in decisions which affect care. If the person who is dying is unable to do this, then someone close to them should be allowed to speak for them. To receive speedy, practical help at home (including care homes) for the end of life. To receive the best care and support with any social difficulties. To have control over any physical pain or emotional distress if they occur. Care: To have access to end of life care in the location we choose. If the choice is at home, then every effort should be made to support this. To have a named key worker who will organise and coordinate care, including where this cuts across organisational boundaries. To have clear information about who to contact around the clock and seven days a week if advice or care is needed at home. To be given every opportunity to take part in decisions which affect care. If the person who is dying is unable to do this, then someone close to them should be allowed to speak for them. To receive speedy, practical help at home (including care homes) for the end of life. To receive the best care and support with any social difficulties. To have control over any physical pain or emotional distress if they occur. “Then it goes on, ‘If the choice is at home, every effort should be made to support this.’ So we’re not going to support you if your choice is hospice or hospital. We have no intention of supporting you. We’re only going to support you if your choice is home. It should say, ‘Whatever the choice is, every effort should be made to support this.’ I think this shows a very clear prejudice that is in one direction more than another.” (Palliative Care Consultant) Makes an assumption that the choice should be at home …

50 The Charter – Care Care: To have access to end of life care in the location we choose. If the choice is at home, then every effort should be made to support this. To have a named key worker who will organise and coordinate care, including where this cuts across organisational boundaries. To have clear information about who to contact around the clock and seven days a week if advice or care is needed at home. To be given every opportunity to take part in decisions which affect care. If the person who is dying is unable to do this, then someone close to them should be allowed to speak for them. To receive speedy, practical help at home (including care homes) for the end of life. To receive the best care and support with any social difficulties. To have control over any physical pain or emotional distress if they occur. Care: To have access to end of life care in the location we choose. If the choice is at home, then every effort should be made to support this. To have a named key worker who will organise and coordinate care, including where this cuts across organisational boundaries. To have clear information about who to contact around the clock and seven days a week if advice or care is needed at home. To be given every opportunity to take part in decisions which affect care. If the person who is dying is unable to do this, then someone close to them should be allowed to speak for them. To receive speedy, practical help at home (including care homes) for the end of life. To receive the best care and support with any social difficulties. To have control over any physical pain or emotional distress if they occur. “I like very much the named key worker, the person who will organise and coordinate care. There are many older people who don’t actually have an involved, current family member.” (Palliative Care Team manager) “One focal point should always be, you don't want to be repeating yourself all the time, do you don't want to be saying the same things to the doctor and then twenty minutes later to the district nurse and then to another doctor or the MacMillan nurse; somebody should co- ordinate all that.” (Bereaved Carer) Very important!

51 The Charter – Care Care: To have access to end of life care in the location we choose. If the choice is at home, then every effort should be made to support this. To have a named key worker who will organise and coordinate care, including where this cuts across organisational boundaries. To have clear information about who to contact around the clock and seven days a week if advice or care is needed at home. To be given every opportunity to take part in decisions which affect care. If the person who is dying is unable to do this, then someone close to them should be allowed to speak for them. To receive speedy, practical help at home (including care homes) for the end of life. To receive the best care and support with any social difficulties. To have control over any physical pain or emotional distress if they occur. Care: To have access to end of life care in the location we choose. If the choice is at home, then every effort should be made to support this. To have a named key worker who will organise and coordinate care, including where this cuts across organisational boundaries. To have clear information about who to contact around the clock and seven days a week if advice or care is needed at home. To be given every opportunity to take part in decisions which affect care. If the person who is dying is unable to do this, then someone close to them should be allowed to speak for them. To receive speedy, practical help at home (including care homes) for the end of life. To receive the best care and support with any social difficulties. To have control over any physical pain or emotional distress if they occur. “It says to have clear information about who to contact around the clock, seven days a week, if advice or care is needed at home, but it doesn’t mention anywhere about being able to have it.” (Social Care Staff) Very important but in terms of wording …

52 The Charter – Care Care: To have access to end of life care in the location we choose. If the choice is at home, then every effort should be made to support this. To have a named key worker who will organise and coordinate care, including where this cuts across organisational boundaries. To have clear information about who to contact around the clock and seven days a week if advice or care is needed at home. To be given every opportunity to take part in decisions which affect care. If the person who is dying is unable to do this, then someone close to them should be allowed to speak for them. To receive speedy, practical help at home (including care homes) for the end of life. To receive the best care and support with any social difficulties. To have control over any physical pain or emotional distress if they occur. Care: To have access to end of life care in the location we choose. If the choice is at home, then every effort should be made to support this. To have a named key worker who will organise and coordinate care, including where this cuts across organisational boundaries. To have clear information about who to contact around the clock and seven days a week if advice or care is needed at home. To be given every opportunity to take part in decisions which affect care. If the person who is dying is unable to do this, then someone close to them should be allowed to speak for them. To receive speedy, practical help at home (including care homes) for the end of life. To receive the best care and support with any social difficulties. To have control over any physical pain or emotional distress if they occur. “You can’t control emotional distress. In fact, if you try to, then you’re likely to perhaps not achieve some of the things that you want to say, and perhaps prevent your family from saying the things they want to say.” (Palliative Care Team Manager)

53 The Charter – Support Support: To have support with the practicalities of dying, death and matters after death. To receive appropriate emotional or spiritual support, with our beliefs and values honoured. To have access to appropriate specialist support, including counseling if required, for families, partners, carers and staff. This may be before or after death occurs. Support: To have support with the practicalities of dying, death and matters after death. To receive appropriate emotional or spiritual support, with our beliefs and values honoured. To have access to appropriate specialist support, including counseling if required, for families, partners, carers and staff. This may be before or after death occurs.

54 Overall rating = 4.6 The Charter – Support

55 Support: To have support with the practicalities of dying, death and matters after death. To receive appropriate emotional or spiritual support, with our beliefs and values honoured. To have access to appropriate specialist support, including counseling if required, for families, partners, carers and staff. This may be before or after death occurs. Support: To have support with the practicalities of dying, death and matters after death. To receive appropriate emotional or spiritual support, with our beliefs and values honoured. To have access to appropriate specialist support, including counseling if required, for families, partners, carers and staff. This may be before or after death occurs. “I guess that captures the issue about the will and benefits. Would I like it signposted more explicitly? I think that there are probably lots of carers of people that are dying who don’t realise the benefits that they could have to help support them. “ (Executive Deputy Director for Health Housing and Adult Services) Needs to be more explicit, what are they

56 The Charter – Support Support: To have support with the practicalities of dying, death and matters after death. To receive appropriate emotional or spiritual support, with our beliefs and values honored. To have access to appropriate specialist support, including counseling if required, for families, partners, carers and staff. This may be before or after death occurs. Support: To have support with the practicalities of dying, death and matters after death. To receive appropriate emotional or spiritual support, with our beliefs and values honored. To have access to appropriate specialist support, including counseling if required, for families, partners, carers and staff. This may be before or after death occurs. “Well, instant counseling, not waiting four or five weeks. Some counseling is there for you when you need it, not in three, four, or five weeks. It’s like when you’re in depression, they’ll say, ‘Well, we’ll make you an appointment.’ Six weeks down the line you’re still waiting of the appointment with the counselling.” (Bereaved carer) “I think it is good that the ‘support after death’, you have got here as well, I think that is really good. … I think that’s an issue, I think, obviously if someone had a Macmillan nurse then they would do that but there are so many patients who don’t have that. … If they’ve been involved with a hospice, if they have had a Macmillan nurse, then I think the follow up after death is extremely good but like I say, if they are one of those people who wasn’t involved in those streams, then I think they probably wouldn’t get any follow up…” (Palliative Care Consultant)

57 The Charter – No consistent gaps highlighted … “It is more of a caring environment than the hospital. They are experienced in dealing with pain.” (Alnwick Focus group) No mention of the hospice …

58 The Charter - Gaps “If you know death is coming and have a realistic prediction of how long, the quality of life isn’t going to be good if you have got nine months to live but are going to be a cabbage for the last eight months of that. You want to be able to say I've got three months left to do what I want to do, and then I know I am not going to be aware of anything.” (Focus group) No mention of the hospice … Information on deterioration in remaining days …

59 The Charter - Gaps No mention of the hospice … Information on deterioration in remaining days … What about sudden death … “I am not so sure that it addresses the sudden death issue. This talks about a very measured journey, it might not be a long journey, but it is still fairly measured. I am not saying that the loss is any greater or not but there is certainly a more immediate need for support direct to the families in the case of a sudden death, the traumatic deaths that we see. (Executive Deputy Director for Health Housing and Adult Services )

60 The Charter - Gaps No mention of the hospice … Information on deterioration in remaining days … Omits education … What about sudden death … “Yes, generally it covers most of what we have talked about, there is an omission there in no mention of educational settings, because we do have children with life limiting illness in education, so I would have rather than having to assume that is in the other category, maybe they can deal with it specifically.” (Director of Social Services)

61 The Charter - Gaps “I’m okay with all of that, there’s only one thing – ‘the person who’s dying, there should be somebody close to them’...I think in that situation you do need an advocate and I guess that’s just another way of saying it. I think my daughter in-spirit, because they’re not married, I think she would be a good advocate. (Patient) No mention of the hospice … Information on deterioration in remaining days … Omits education … What about sudden death … An advocate … ?

62 The Charter - Gaps No mention of the hospice … Information on deterioration in remaining days … Omits education … What about sudden death … An advocate … ? What about ‘hope’? “I think the word hope needs to be put in there somewhere. … I think there needs to be some kind of acknowledgement that, you know, a diagnosis even at the end itself, there is still living to be done and there is always the possibility of some kind of remission or change that was not predicted and I think for the individual who has the illness and for their family or friends that if you 're carrying on, that hope is important.” (Voluntary organisation)

63 Implementation

64 “Definitely, if it’s followed up right through from everyone concerned. I mean, I cannot make a difference to the charter. I can give you information on what I think, which I think it’s a good thing, but I mean you want to get doctors involved that will take the time to sit with you.” (Patient) “ I spent many years writing mission statements and charters and things like this, and it was just words and you just did it to tick the box and then you went back to what you would normally do. It will only mean something if it is implemented. It is audible, it sounds about right.” (Bereaved Carer) Patient and carer perspective – the Charter needs to mean something, not just words How will it be enforced and audited? How will this give us rights? Patient and carer perspective – the Charter needs to mean something, not just words How will it be enforced and audited? How will this give us rights? Implementation – Public perspective

65 Implementation – the stakeholder perspective Needs to be intrinsic to services and have buy in from all Not a tick box exercise, but something that is built into the way services are structured and training is provided Needs to be intrinsic to services and have buy in from all Not a tick box exercise, but something that is built into the way services are structured and training is provided “I think implementation is for everybody. Presumably the Strategic Health Authority will introduce it. It has to be everybody. Everybody has to buy into it; everybody has to agree to it as a wholly good thing.” (Team manager in acute services) "Who needs to be involved in making the changes? I think it’s probably local authorities and PCTs that need to design how they commission these services and the involvement of the voluntary sector and third sector organisations as well as the statutory service agencies. Then it’s a very large number of people and a large number of organisations in terms of frontline staff that then need to know how we expect them to respond and react in individual circumstances." (CEO)

66 Responsibility – the public perspective

67 Responsibility Generally all respondents felt that everyone who comes into contact with the patient during their journey should be using and abiding by the Charter Stakeholders accepting that they would use it in their work Generally all respondents felt that everyone who comes into contact with the patient during their journey should be using and abiding by the Charter Stakeholders accepting that they would use it in their work "I think you have included almost everybody haven’t you really, with the GPs, the health care professions, the carers, the people that are actually dying, their families, outside agencies such as volunteers, advocates, anybody who is involved with the person really. … Everybody across the board." (Care home manager) "The whole shooting match, really. “ (Carer)

68 Responsibility Generally all respondents felt that everyone who comes into contact with the patient during their journey should be using and abiding by the Charter Stakeholders accepting that they would use it in their work Generally all respondents felt that everyone who comes into contact with the patient during their journey should be using and abiding by the Charter Stakeholders accepting that they would use it in their work Some doubt regarding funeral directors and solicitors from patients and the general public Stakeholders did think these groups were important and should at least be aware of the spirit of the Charter Some doubt regarding funeral directors and solicitors from patients and the general public Stakeholders did think these groups were important and should at least be aware of the spirit of the Charter “I think it is impractical, unfortunately, to expect the solicitor to take a very personal approach and be attached to any case that they deal with because of the volume of work that they have to deal with.” (Durham focus group) "Well they don’t come in till its happened, so I don't think it would apply to them, but I don't suppose there would be any harm in doing it." (Patient)

69 And many more mentioned across research – anyone who touches the patient’s journey … Religious figures Police Fire Brigade Government Counsellors LINK organisations Citizens advice Prisons Care homes and hospices (including everyone from managers to domestics) Social services Schools Paramedics Everyone working in the hospital Employers Care agencies Promotion & Responsibility – the public perspective

70 Communication

71 Promotion – Public Charter to be available to all, if they want it (view across the board inc. stakeholders)… In terms of the public … Charter to be available to all, if they want it (view across the board inc. stakeholders)… In terms of the public …

72 Promotion – Public Wider public audience aka the general public Patients and their support network Charter to be available to all, if they want it (view across the board inc. stakeholders)… In terms of the public … Charter to be available to all, if they want it (view across the board inc. stakeholders)… In terms of the public …

73 Promotion – Public Wider public audience aka the general public Patients and their support network Generally raise awareness via the media Available to request it if they want it Ensure aware, before experience However accept interest may not be great Charter to be available to all, if they want it (view across the board inc. stakeholders)… In terms of the public … Charter to be available to all, if they want it (view across the board inc. stakeholders)… In terms of the public …

74 Promotion – Public Wider public audience aka the general public Patients and their support network Offered sensitively at appropriate time Not at initial diagnosis – once this has been absorbed Inform is available rather than handing over – ensuring sensitivity retained Charter to be available to all, if they want it (view across the board inc. stakeholders)… In terms of the public … Charter to be available to all, if they want it (view across the board inc. stakeholders)… In terms of the public …

75 “I think that it should be available, certainly as a pick up document in GP surgeries etc, but I think that there should be an expectation that if somebody is given that level of information that it’s done in a sensitive manner and it’s supported with information, including the charter, in my view. People should know what they’re entitled to at that stage.” (Manager of in house services) "I think it depends you see, because you can asses your client, if they are sensitive, if they are like brave enough to face it. Because if a person is a bit sensitive it is torture to hand them something like this without explanation.” (Care home manager) Stakeholders in particular expressed caution when giving the Charter to patients Not just a case of handing over a leaflet Stakeholders in particular expressed caution when giving the Charter to patients Not just a case of handing over a leaflet Promotion – Public

76 Also reflected in patients/carers and general public

77 Promotion – Public In health and community settings e.g. GP and libraries

78 Promotion – Public Particularly News segments

79 Promotion – Stakeholder Create awareness of Charter amongst stakeholder groups Open up a conversation about death and dying Lose the taboo Create awareness of Charter amongst stakeholder groups Open up a conversation about death and dying Lose the taboo

80 Promotion – Stakeholder LAUNCH “Sign up” Information and training provided to senior people, who can then …. “Sign up” Information and training provided to senior people, who can then …. Cascade down to …. Staff Regional event(s) to raise awareness and get key people interested Also enabling questions to be asked Regional event(s) to raise awareness and get key people interested Also enabling questions to be asked Allowing consideration as how to implement on an organisational level Training to ensure all understand and work to the Charter and any changes to policy and procedures

81 Training felt to be important amongst stakeholders (current workforce and incorporated into training programmes) Ensure are comfortable talking about subject Understand the implications of The Charter Training felt to be important amongst stakeholders (current workforce and incorporated into training programmes) Ensure are comfortable talking about subject Understand the implications of The Charter “I think the training and education will increase the awareness of the charter as I think this is a fundamental part of the service we deliver and again accessing the need for education training, so there will be some work required around that within the health service.” (Training provider) “It is wonderful in principle, but I think that for it to work, in the way that it is anticipated, would involve a huge amount of training for all the people involved, to get it right. One of the possible issues is that they have to be able to put aside their own feelings of what they would want for a good death, and to step aside and listen to what the individual wants, as everyone is different.” (Voluntary organisation) Promotion – Stakeholder “Well only that I do think it is important that it should be included in any training of any health professionals or people who might be working with people who are dying. I think it is an important part of a training agenda.” (Voluntary organisation)

82 Some respondents felt that there were not and should not be any barriers However the following were mentioned (generally not consistently across group types) Some respondents felt that there were not and should not be any barriers However the following were mentioned (generally not consistently across group types) Barriers

83 Most consistently mentioned across groups Patient and carer perspective (plus general public) Everyone is so busy and they just don’t have the time to do these things Based on experience Stakeholder Have time to talk to patients and discuss these things in a hospice, but in an acute setting on a GP they are too busy Most consistently mentioned across groups Patient and carer perspective (plus general public) Everyone is so busy and they just don’t have the time to do these things Based on experience Stakeholder Have time to talk to patients and discuss these things in a hospice, but in an acute setting on a GP they are too busy “Yes, and the thing about this is having these sort of discussions is time consuming. You can’t rush it. You can’t say, ‘I’ve booked an appointment to talk about this with you now. If you don’t want to talk about it now, that’s it. You’ve missed your chance.’”(GP) Barriers Time

84 CEO perspective Expectations have to managed in line with resources available Can only raise expectations to what is achievable Especially when patients see this as “rights” CEO perspective Expectations have to managed in line with resources available Can only raise expectations to what is achievable Especially when patients see this as “rights” “For me, the one thing I’d want to do is to build into this Charter somewhere – and a lot of people won’t like it, but I’d like to see it – something upfront around, ‘We spend a great deal of money providing end of life care, but we don’t always do it in the right settings, in the way that the individual and their families would wish. We think there’s a way in which you can use that resource and better meet their needs, better meet their wishes.’ In a time of significant economic constraint, we won’t have additional resources to create something new and extra; we’ve got to look at how we redeploy and change and make more efficient how we use our current resources. That’s what this needs to lead to." (CEO) Barriers Time Funding

85 Staff not working in palliative care may have some discomfort talking about these things Education and training required Staff not working in palliative care may have some discomfort talking about these things Education and training required “Not many people are comfortable talking about it and discussing it, if you get out of a hospice setting, which is precisely the reason why lots of patients won’t go near hospices, because it means death. So you’ve got to be able to get it out and talk about it.” (GP) Barriers Time Funding Discomfort

86 Time Public Funeral directors do all this anyway and have things in place Stakeholders Palliative care and things like Marie Curie may think they are doing it already and disregard E.g. care home already have policy and procedures in place in relation to death, already built into training Public Funeral directors do all this anyway and have things in place Stakeholders Palliative care and things like Marie Curie may think they are doing it already and disregard E.g. care home already have policy and procedures in place in relation to death, already built into training Funding Discomfort Something in place already "Yes, we obviously do have, I mean X is a huge company and we do have a lot of policies and procedure relating to palliative care, death and dying. The staff do palliative care training, so we do actually have a huge amount of policies, procedures that we have to go through anyway, but saying that, that one is condensed and says everything, you know what I mean. So it would be worth having as an actual charter." (Care home manager) Barriers

87 Time Hospitals are focused on helping people live, e.g. surgeons Funding Discomfort Something in place already “…but there is a point where they say 'They are not going to get any better, they don't need any treatment from now on it is the process of dying'. I think from that point that most health professionals almost turn off, 'I can't help here we will just let the relatives help or do something‘..” (Overview and Scrutiny Committee) Barriers Focussed on helping people live …

88 Summary of key findings

89 The Charter Charter is well received by all audiences for various reasons Opens conversation Ties in with Advanced Care Planning and Marie Curie Delivering Choice Becomes a Frame of Reference – manage public expectations and practitioner delivery Title has mixed opinions It normalises death and is attention grabbing v insensitive to those in the situation Charter detail all received high ratings and very little consistent comment made regarding improvements No consistent gaps identified Some slight word change suggestions Point for consideration: Generally interpreted as for those facing death rather than population in general in contrast to USA where death planning is part of healthcare planning due to financial planning

90 Implementation It needs to be clearly communicated as being ‘more than words’ Engrain in existing and new services Training GPs could play a key role in awareness raising Consider perceived conflict of interest – there to make people better Awareness raising required to normalise and become part of life’s plan Trusted informative communication channels required Medical (e.g. GP), news (rather than adverts)

91 One Source for all your market research


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