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

A Good Death Research PresentationProduced for:

Creating a Compassionate CommunityThursday 18th March 2010

.

• Background• Methodology • Local vs. National Picture• Opinions on the Charter• Communication and implementation• Summary of key findings

Agenda – Key Findings from the Survey

Background

.

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

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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



10

Community

Faith, Voluntary, Community,

Children & Young People

Organisations



10

Other Stakeholders

Overview and Scrutiny

Committee

CATI(semi structured)

4

Methodology - Stakeholders

• Public incorporated over several strands …

.

Face to face Interviews

Patients and Carers

24

Online

Available to public and

stakeholder

1452

On-street

Representative quota sample

1120

Focus Groups

Age 18-25Age 55+

4

Methodology – The Public

Local vs. national picture

. Notes on sample

On-street

• Conducted early October 2009 (Tuesday 6th – Sunday 18th) - 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

. Notes on sample Online

• Open from 5th October – 13th December 2009• 1452 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 public 580

Businesses 60

Voluntary organisations 54

Health care professionals 615

Total 1310

. Talking about death

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

National Survey (Base 1366)

On-street (Base 1114)

Online (1271)

6% 4% 7%11% 12% 12%

16% 22% 16%

39%35% 45%

29% 26% 20%

Which of the following best describes how you feel when talking about death?

I feel very comfortable talking about death

I feel fairly comfortable talking about death

I have no strong feelings either way

I feel fairly uncomfortable talking about death

I feel very uncomfortable talking about death

. 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

Question National (1366) North East (2348)Experienced death of some one you care for in last 5 years? 62% 68%

Seen a dead body? 69% 66%

Want to be told if terminally ill? 88% 90%

Attended funeral of family member, friend or work colleague? 94% 94%

88% on-street, 94%

online

80% online

As expected, younger less likely

40% experienced

a death in last 12

months

. 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

At home In a hospital In a hospice In a nursing home

In a care home Somewhere else

Don't mind

70%

7% 5%1% 1%

5%

12%

57%

16%10%

2% 1%4%

11%

56%

4%

23%

0% 0%3%

15%

Thinking about yourself, when the time comes, where do you think would be the best place to die?

National Survey (Base 1290) On-street (Base 1117) Online (1267)

. End of life care

•Most important thing for end of life care is to be pain free

Most (1289) Most (2348)National Survey On-street & online combined

23%

34%

23%

18%

25%28%

10% 9%12%

6%7%6%

When the time comes for your death, what do you think would be the most im-portant thing for your end of life care?

To be pain free

To retain my dignity

To be with my family or friends

To be peaceful /calm

To be sure that I am not a burden on other people

For people to listen and be respectful of my wishes

Mostly general public

and DE’s

More likely to be 65+

More likely to

be younger (16-24)

. End of life care

Next most important thing is to be with family or friends, same as national

Next (1285) Next (2338)National Survey On-street & online combined

20%22%

19%22%

28%25%

11%

16%

13%

9%9%7%

When the time comes for your death, what do you think would be the next most important thing for your end of life care?

To be pain free

To retain my dignity

To be with my family or friends

To be peaceful /calm

To be sure that I am not a burden on other people

For people to listen and be respectful of my wishes

. Your wishes

None of these

Dying with dignity e.g. respectful care and support

Spiritual and religious needs

Where you would prefer to die

Medical needs

Pain relief

Privacy and peace

71%

16%

11%

10%

7%

7%

6%

64%

19%

8%

16%

9%

10%

8%

55%

30%

19%

18%

18%

16%

15%

Have you ever actually discussed with someone what your wishes would be in any of these areas if you did not have long to live? MULTIPLE RESPONSE

Online (1269)

On-street (Base 1114)

National Survey (Base 1300)

The majority (61%) had not discussed their wishes, lower than national averageDying with dignity was the area discussed most (22%)

Majority 16-24

Older (65+) respondents and health

care professionals discussing more things,

more often.Lower SEGs (DE) less

likely

. Your wishes

For the majority, death seems a long way off or they are too young to discuss deathMore people in the north east feel others don’t want to talk to them about death

I don't feel com-fortable talking

about death

Death feels a long way off

I'm too young to discuss death

There is no-one available to me to

talk to about death

Other people do not want to talk to me about my

death

Other

10%

45%

18%

1%

7%

19%

10%

37%

22%

4%

13% 15%

Which of these statements best describes why you have not discussed any of these issues with anyone?

National (915) On-street and Online Combined (Base 1398)

55+ most uncomfortable

16% are 75+! (national 20%)30% are 65-74More likely to

be AB’s Mainly 65+

85% are 16-34

. 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.”

. Planning for death

To get the right sort of care and

support

Your financial support

Your funeral arrangements

To get the right sort of care and

support

Your financial support

Your funeral arrangements

National (1266 to 1283)On-street and Online Combined (2350 to 2353)

3%4%6%6%8%4%15%18%10%

26%30%20%

55%52%51%

49%43%

44%

27%26%34%19%19%

33%

How confident do you feel that you would be able to plan the following

Very confident

Fairly confident

Not very confident

Not at all confident

•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%)

16-34 year olds less confident about financial support and funeral arrangements


•The majority (70%) of respondents do not have any plans for their end of life care

None of these

My funeral wishes / plan

Written wishes about organ donation

My wishes and preferences about end of life care should I become unable to decide for myself (living will)

My plan for how I would support myself financially when I am dying

78%

11%

10%

4%

2%

70%

16%

12%

8%

3%

Do you have any written plans for your end of life care, financial wishes or a written plan for your funeral? MULTIPLE RESPONSE

On-street and Online Combined (Base 2334) National Survey (Base 1301)

16-24 year olds least

likely to have plans (94%)


•Making death easier for family members (62%) was the key reason to start planning for death

To make my death / dying easier for my family

To ensure I had the right care and support when I am dying

To have the funeral I wanted

None of these

If I got support from someone to help me make a written care plan and end of life plan for myself

If it was easy to access information about how to plan for my death

62%

14%

8%

8%

7%

2%

62%

15%

7%

9%

5%

2%

If you knew you did not have long to live, which of these would be the most likely to make you start planning for your death?

On-street and Online Combined (Base 2348) National Survey (Base 1287)

Higher for health care professionals (72%) than general

public (58%)


•Almost half in the north east (45%) do not have a will or organ donor card

A will An organ donor card / I am registered as an organ donor

None of these

38%

26%

47%

37%

22%

52%

45%48%

28%

Do you have any of the following? MULTIPLE RESPONSE

National Survey (1302) On-street (Base 1114) Online (1247)

55 + more likely to

have a will

16-24 year olds less likely to have none

(81%) and DE’s

40% of 35-44 year

olds


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

Family / Friend

Doctor / GP

The Internet

Solicitor

Funeral Director

Other

Nurse

35%

31%

9%

8%

8%

7%

3%

22%

41%

4%

9%

8%

3%

13%

And through what source would you prefer to receive information about planning for your end of life care and your death?

On-street and Online Combined (Base 2110) National Survey ( Base 1083)

. Local vs. national summary – significant difference

Question National North East

Experienced death in last 5 years 62% 68%

Most important for end of life care - pain free 23% 34%Do you have an organ donor card/registered as donor - Yes 26% 31%

Prefer to receive info from Doctor/ GP 31% 41%

Best place to die - Home 70% 58%

No written plans 78% 70%

Discussed wishes - none of these 71% 61%

Why not discussed wishes - death feels a long way off 45% 37%

Very/fairly confident – Planning right care & support 82% 68%

Very/fairly confident – Planning financial support 78% 62%

Very/fairly confident - Plan your funeral arrangements 85% 77%

Questions National North East

.

Question National North East

Very/fairly uncomfortable talking about death 17% 19%

Want to be told if terminally ill 88% 90%

Attended funeral 94% 94%

Planning to make death easier for family 62% 62%

Have a will 38% 38%

Seen a dead body 69% 66%

Local vs. national summary – no significant difference

Questions National North East

Opinions on The Charter

. Should a Charter such as this be developed?

. Should a Charter such as this be developed?

YES!

.

•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)

.

•Strong stakeholder support to open conversation about death and dying

•Also felt could work well with Advanced Care Planning and Marie Curie Delivering Choice


.

•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)


. 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)






hitting




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




who are going through that process is a judgment call.” (Director of

Social Services)






hitting




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




who are going through that process is a judgment call.” (Director of

Social Services)

.

Not at all valuable

Somewhat valuable

Quite valuable Extremely valuable

Don't know

4%

21%

48%

17%11%

Do you think a charter such as this would be …..? (ONSTREET Base 1106)

•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%))


• All happy with tone and language, felt to be understandable by all•Charter generally covered everything raised as important for a good death

. 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 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.

. 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.

.

•Overall rating = 4.7

The Charter – Respect

To see death acknowledged as 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 have clear, honest and tailored information and good communication throughout illness or frailty

4.5

4.8

4.7

4.8

RESPECT - On a scale of 1 to 5, to what extent do you agree that each of the following should be a part of the charter? (ONLINE Base 1270 to 1290)


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 communicationthroughout 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



“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)



“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



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)

. 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.

.


The Charter – 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

4.3

4.4

4.7

TIME TO PLAN - On a scale of 1 to 5, to what extent do you agree that each of the following should be a part of the charter? (ONLINE

Base 1264 to 1276)

.



“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

.



“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

•Opportunity implies choice which is good

. 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)


• It is very difficult to get it right!

. 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.



To have access to end of life care in the location we choose. If the choice is at home, then every effort …

To have a named key worker who will organise and coordinate care, including where this cuts across …

To have clear information about who to contact around the clock and seven days a week if advice or …

To be given every opportunity to take part in decisions which affect care. If the person who is dying is …

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

4.7

4.6

4.8

4.7

4.7

4.8

4.7

CARE - On a scale of 1 to 5, to what extent do you agree that each of the following should be a part of the charter? (ONLINE Base 1259 to 1274)



“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 …

. The Charter – CareCare:• 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!



“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 …



“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)

. 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.

.


The Charter – 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

4.7

4.4

4.6

SUPPORT - On a scale of 1 to 5, to what extent do you agree that each of the following should be a part of the charter? (ONLINE Base

1266 to 1275)


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 orafter 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


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)

. 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 …

. 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)


Information on deterioration in

remaining days …




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 )




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)


“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)



remaining days …

Omits education …


…

An advocate … ?




remaining days …

Omits education …


…

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)

Implementation

.

“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?

Implementation – Public perspective

. 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

“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)

. Responsibility – the public perspective

GPs

Nurses

Social Workers

Community / voluntary organisations

Solicitor dealing with end of life plans / will

Counsellors

Funeral Director

I should

Other

71%

47%

30%

29%

28%

28%

24%

15%

12%

If the draft charter were to be implemented, who do you think should be responsible for implementing this? MULTIPLE RESPONSE (COMBINED FIGURES Base 2340)

. 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

"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)

. 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

•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)

.

And many more mentioned across research – anyone who touches the patient’s journey …

Religious figuresPoliceFire BrigadeGovernmentCounsellorsLINK organisationsCitizens advicePrisons 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

Communication

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

. 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 …




Generally raise awareness via the mediaAvailable to request it if they

want itEnsure aware, before

experienceHowever accept interest may

not be great





Offered sensitively at appropriate timeNot at initial diagnosis –

once this has been absorbedInform is available rather

than handing over – ensuring sensitivity retained


.

“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

Promotion – Public


Leaflets / brochures / posters

TV

Via other organisations involved in end of life care e.g. …

Press

Radio

Internet / websites

Road shows

Via health and social care staff

Word of mouth

Other

56%

54%

48%

37%

34%

26%

23%

19%

11%

11%

If this draft charter were to be implemented, how should the charter be promoted? (COMBINED FIGURES Base 2354)

• Also reflected in patients/carers and general public



TV


Press

Radio

Internet / websites

Road shows


Word of mouth

Other

56%

54%

48%

37%

34%

26%

23%

19%

11%

11%


• In health and community settings e.g. GP and libraries



TV


Press

Radio

Internet / websites

Road shows


Word of mouth

Other

56%

54%

48%

37%

34%

26%

23%

19%

11%

11%


•Particularly News segments

. Promotion – Stakeholder

create awareness

• Create awareness of Charter amongst stakeholder groups • Open up a conversation about death and dying• Lose the taboo

. Promotion – Stakeholder

LAUNCH

“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

• 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

create awareness

.

• 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)

.

• 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

.

• 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

.

• 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

.

• 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

FundingDiscomfort

.

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

FundingDiscomfort

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

.

Time

• Hospitals are focused on helping people live, e.g. surgeons

FundingDiscomfort

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

…

Summary of key findings

. The CharterCharter is well received by all audiences for various reasons

Opens conversationTies in with Advanced Care Planning and Marie Curie Delivering ChoiceBecomes a Frame of Reference – manage public expectations and practitioner delivery

Title has mixed opinionsIt 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 identifiedSome 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

. Implementation

It needs to be clearly communicated as being ‘more than words’

Engrain in existing and new servicesTraining

GPs could play a key role in awareness raisingConsider 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 requiredMedical (e.g. GP), news (rather than adverts)

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