Gail Eva University of Oxford, and

Sir Michael Sobell House Hospice

COT Specialist Section Neurological PracticeAnnual Conference

Newcastle 3rd October 2008

The fundamental contribution of The fundamental contribution of

rehabilitation is to enable a person’s rehabilitation is to enable a person’s

sense of autonomy, self-worth, social sense of autonomy, self-worth, social

participation and economic self-participation and economic self-

sufficiency, in a process led by the sufficiency, in a process led by the

disabled person.disabled person.

Receiving adequate symptom managementReceiving adequate symptom management

Co-ordination and continuity of care Co-ordination and continuity of care

Avoiding inappropriate prolongation of dying Avoiding inappropriate prolongation of dying

A sense of control, achievement and self-worthA sense of control, achievement and self-worth

Relieving one’s burden upon othersRelieving one’s burden upon others

Strengthening relationships with loved onesStrengthening relationships with loved ones

Having an opportunity to say goodbye and bring closure Having an opportunity to say goodbye and bring closure

Singer Singer et al. et al. (1999) Quality End-of-Life Care. Patients' Perspectives. (1999) Quality End-of-Life Care. Patients' Perspectives. JAMAJAMA 281:163-168. 281:163-168.

Heyland Heyland et al. et al. (2006) What matters most in end-of-life care: perceptions of seriously ill patients and their (2006) What matters most in end-of-life care: perceptions of seriously ill patients and their family members. family members. CMAJCMAJ 174 (5): 627-633. 174 (5): 627-633.

Aspinal Aspinal et al. et al. (2006) What is important to measure in the last months and weeks of life? A modified (2006) What is important to measure in the last months and weeks of life? A modified nominal group study. nominal group study. Int J Nurs StudInt J Nurs Stud 43(4): 393-403 43(4): 393-403

Receiving adequate symptom managementReceiving adequate symptom management

Co-ordination and continuity of care Co-ordination and continuity of care

Avoiding inappropriate prolongation of dying Avoiding inappropriate prolongation of dying

A sense of control, achievement and self-worthA sense of control, achievement and self-worth

Relieving one’s burden upon othersRelieving one’s burden upon others

Strengthening relationships with loved onesStrengthening relationships with loved ones

Having an opportunity to say goodbye and bring closure Having an opportunity to say goodbye and bring closure

Singer Singer et al. et al. (1999) Quality End-of-Life Care. Patients' Perspectives. (1999) Quality End-of-Life Care. Patients' Perspectives. JAMAJAMA 281:163-168. 281:163-168.

Heyland Heyland et al. et al. (2006) What matters most in end-of-life care: perceptions of seriously ill patients and their (2006) What matters most in end-of-life care: perceptions of seriously ill patients and their family members. family members. CMAJCMAJ 174 (5): 627-633. 174 (5): 627-633.

Aspinal Aspinal et al. et al. (2006) What is important to measure in the last months and weeks of life? A modified (2006) What is important to measure in the last months and weeks of life? A modified nominal group study. nominal group study. Int J Nurs StudInt J Nurs Stud 43(4): 393-403 43(4): 393-403

To know when death is coming, and what might be expected.To know when death is coming, and what might be expected.

To be afforded dignity and privacy.To be afforded dignity and privacy.

To have choice and control over where death occurs.To have choice and control over where death occurs.

To have control over pain and other symptoms.To have control over pain and other symptoms.

To have access to information and expertise as is necessary.To have access to information and expertise as is necessary.

To have control over who is present at the end.To have control over who is present at the end.

To be able to issue advance directives to ensure wishes are respected.To be able to issue advance directives to ensure wishes are respected.

To have time to say goodbye.To have time to say goodbye.

To leave when it is time to go, not have life prolonged pointlessly.To leave when it is time to go, not have life prolonged pointlessly.

Age Concern 1999 / BMJ 2000Age Concern 1999 / BMJ 2000

The concept of adjustment in the context of a The concept of adjustment in the context of a deteriorating illness.deteriorating illness.

Negotiating “realistic” goals with patients and Negotiating “realistic” goals with patients and families.families.

Providing information in the context of uncertainty.Providing information in the context of uncertainty.

Being comfortable discussing dying and the Being comfortable discussing dying and the existential concerns that patients have. existential concerns that patients have.

Predicting and diagnosing dying.Predicting and diagnosing dying.

Problems with co-ordination, resources and knowledge:Problems with co-ordination, resources and knowledge:

‘‘No coordination between neurology and palliative care.’No coordination between neurology and palliative care.’

‘‘There are insufficient therapists at the local hospice to make it easy There are insufficient therapists at the local hospice to make it easy to manage disability.’to manage disability.’

‘‘Specialist palliative care services are reluctant to engage with non-Specialist palliative care services are reluctant to engage with non-cancer patients.’cancer patients.’

‘‘The local hospice will not take long term neurological patients until The local hospice will not take long term neurological patients until the very last stages.’the very last stages.’

NCPC 2006NCPC 2006

39%

25%

18%

4%

3%

2%2%

1%1%

5%

Circulatory diseases

Cancer

Respiratory diseases

Digestive system

Injury and poisoning

Mental illnesses

Nervous system

Genito-urinary

Metabolic disorders

Other

Cancer Cancer 85%85%

Everything else Everything else 15%15%

PrioritisingPrioritising

PacingPacing

PlanningPlanning

1.1. What What needsneeds to be done in your day or week? to be done in your day or week?

2.2. What do you What do you wantwant to do? to do?

3.3. (What do others expect you to do?)(What do others expect you to do?)

4.4. How important is this activity to you?How important is this activity to you?

5.5. How much energy do these different activities How much energy do these different activities use up? use up?

6.6. What can you eliminate or stop doing?What can you eliminate or stop doing?

7.7. What can you ask others to do for you?What can you ask others to do for you?

Three PsThree Ps

Looking out for, and supporting, Looking out for, and supporting, the ways in which patients are the ways in which patients are acknowledging and adapting to acknowledging and adapting to disability.disability.

Identifying short-term, achievable Identifying short-term, achievable goals and goals and focussingfocussing on these. on these.

Encouraging realism without Encouraging realism without contradicting patients’ preferred contradicting patients’ preferred sense of self.sense of self.

The physiotherapist comes round to offer help with The physiotherapist comes round to offer help with

getting back on my feet. She comes in, sits down in getting back on my feet. She comes in, sits down in

the living room with me, it's ten in the morning, I'm the living room with me, it's ten in the morning, I'm

still in pyjamas, feeling exhausted, and she says, still in pyjamas, feeling exhausted, and she says,

‘How can I help?’ ‘How can I help?’

And then she has no advice to offer. It's constantly a And then she has no advice to offer. It's constantly a

surprise to me how very often these professionals surprise to me how very often these professionals

are so unprepared and unhelpful. She has no are so unprepared and unhelpful. She has no

advice other than what I realise now is the standard, advice other than what I realise now is the standard,

‘Take each day as it comes.’ I think that means do ‘Take each day as it comes.’ I think that means do

on each day what you feel able to do. on each day what you feel able to do.

My impression is they are just coming around to My impression is they are just coming around to

see if you want to talk - it's as if all the see if you want to talk - it's as if all the

professionals think the great need is for patients professionals think the great need is for patients

to talk about their illness.to talk about their illness.

Actually, I find I'm desperately looking for practical Actually, I find I'm desperately looking for practical

advice: what exercise is good to do? any advice: what exercise is good to do? any

exercise? none at all? when will I feel normal exercise? none at all? when will I feel normal

again? how much fatigue is a normal amount in again? how much fatigue is a normal amount in

these circumstances? what can one do to these circumstances? what can one do to

alleviate the fatigue? alleviate the fatigue?

““And to every single question the answer is: ‘Take And to every single question the answer is: ‘Take

each day as it comes…’ It’s very tiring talking to each day as it comes…’ It’s very tiring talking to

these professionals.”these professionals.”

My impression is they are just coming around to My impression is they are just coming around to

see if you want to talk - it's as if all the see if you want to talk - it's as if all the

professionals think the great need is for patients professionals think the great need is for patients

to talk about their illness.to talk about their illness.

Actually, I find I'm desperately looking for practical Actually, I find I'm desperately looking for practical

advice: what exercise is good to do? any advice: what exercise is good to do? any

exercise? none at all? when will I feel normal exercise? none at all? when will I feel normal

again? how much fatigue is a normal amount in again? how much fatigue is a normal amount in

these circumstances? what can one do to these circumstances? what can one do to

alleviate the fatigue? alleviate the fatigue?

““And to every single question the answer is: ‘Take And to every single question the answer is: ‘Take

each day as it comes…’ It’s very tiring talking to each day as it comes…’ It’s very tiring talking to

these professionals.”these professionals.”

The concept of adjustment in the context of a The concept of adjustment in the context of a deteriorating illness.deteriorating illness.

Negotiating achievable goals with patients and Negotiating achievable goals with patients and families.families.

Providing information in the context of uncertainty.Providing information in the context of uncertainty.

Being comfortable discussing dying and the Being comfortable discussing dying and the existential concerns that patients have. existential concerns that patients have.

Predicting and diagnosing dying.Predicting and diagnosing dying.

A process a person goes A process a person goes

through, following through, following

physical / psychological physical / psychological

trauma, of regaining an trauma, of regaining an

orientation towards orientation towards

yourself, towards others, yourself, towards others,

and towards the future and towards the future

that is compatible with that is compatible with

psychological well-being.psychological well-being.

Everything has been arranged, from A Everything has been arranged, from A

to Z. I had the funeral directors to Z. I had the funeral directors

around, chose my coffin. I love my around, chose my coffin. I love my

husband to death, but I love my Mum husband to death, but I love my Mum

and Dad to death as well. And it did and Dad to death as well. And it did

worry me, you know, what’s going to worry me, you know, what’s going to

happen, if I get buried here, it’s too far happen, if I get buried here, it’s too far

for my Mum and Dad to come if they’re for my Mum and Dad to come if they’re

feeling they want to grieve one day feeling they want to grieve one day

and vice versa, Graham. So I’ve and vice versa, Graham. So I’ve

spoken to both of the vicars who come spoken to both of the vicars who come

to visit me, and although I didn’t really to visit me, and although I didn’t really

want to get cremated, I’m going to be want to get cremated, I’m going to be

cremated, and there are going to be cremated, and there are going to be

two caskets and one will be buried two caskets and one will be buried

back home and one will be buried back home and one will be buried

here…here…

… … So I’ve got all of those practicalities, So I’ve got all of those practicalities,

sorted, you know. I’ve chosen the sorted, you know. I’ve chosen the

hymns, chosen the music I want hymns, chosen the music I want

played. It’s all done. played. It’s all done.

So if God forbid, you know, I take a So if God forbid, you know, I take a

turn for the worse, today or tomorrow, turn for the worse, today or tomorrow,

everything, you know, the i’s are everything, you know, the i’s are

dotted the t’s are crossed on the dotted the t’s are crossed on the

service and what I want.service and what I want.

OT: Gill was remaining incredibly positive considering what was OT: Gill was remaining incredibly positive considering what was happening to her. We talked about what she was going to be able to happening to her. We talked about what she was going to be able to manage and what she wasn’t going to be able to manage and my manage and what she wasn’t going to be able to manage and my perception was that she was holding it together because that’s her perception was that she was holding it together because that’s her personality. She’s a professional lady and she’s always taken a bright personality. She’s a professional lady and she’s always taken a bright outlook on things as far as she can.outlook on things as far as she can.

OT: Gill was remaining incredibly positive considering what was OT: Gill was remaining incredibly positive considering what was happening to her. We talked about what she was going to be able to happening to her. We talked about what she was going to be able to manage and what she wasn’t going to be able to manage and my manage and what she wasn’t going to be able to manage and my perception was that she was holding it together because that’s her perception was that she was holding it together because that’s her personality. She’s a professional lady and she’s always taken a bright personality. She’s a professional lady and she’s always taken a bright outlook on things as far as she can.outlook on things as far as she can.

Social Worker: She’s a very competent person, and she has overcome a Social Worker: She’s a very competent person, and she has overcome a lot of the problems herself, in terms of things like finding somebody to lot of the problems herself, in terms of things like finding somebody to provide the care that she wants. She’s very resourceful, she will not sit provide the care that she wants. She’s very resourceful, she will not sit there feeling sorry for herself. She will sit there working on ways of there feeling sorry for herself. She will sit there working on ways of achieving what she wants.achieving what she wants.

OT: Gill was remaining incredibly positive considering what was happening OT: Gill was remaining incredibly positive considering what was happening to her. We talked about what she was going to be able to manage and what to her. We talked about what she was going to be able to manage and what she wasn’t going to be able to manage and my perception was that she was she wasn’t going to be able to manage and my perception was that she was holding it together because that’s her personality. She’s a professional lady holding it together because that’s her personality. She’s a professional lady and she’s always taken a bright outlook on things as far as she can.and she’s always taken a bright outlook on things as far as she can.

Social Worker: She’s a very competent person, and she has overcome a lot Social Worker: She’s a very competent person, and she has overcome a lot of the problems herself, in terms of things like finding somebody to provide of the problems herself, in terms of things like finding somebody to provide the care that she wants. She’s very resourceful, she will not sit there feeling the care that she wants. She’s very resourceful, she will not sit there feeling sorry for herself. She will sit there working on ways of achieving what she sorry for herself. She will sit there working on ways of achieving what she wants.wants.

Nurse: Gill’s a great initiator. She knows how to take things forward and Nurse: Gill’s a great initiator. She knows how to take things forward and she’s very clear about you don’t wait around for people to do stuff for you, she’s very clear about you don’t wait around for people to do stuff for you, you get on and do it yourself.you get on and do it yourself.

OT:

Gill went home adamant that she wanted to be upstairs, which we completely went with because that was her wish. The bath was highly important to her and there was no way of having a bath downstairs, and she felt that was a better option.

Three o’clock this morning, there I was Three o’clock this morning, there I was

wide awake and my head’s going round wide awake and my head’s going round

thinking about the old place and what thinking about the old place and what

I’m going to do. How I’m going to get I’m going to do. How I’m going to get

my rice pudding from the kitchen to my my rice pudding from the kitchen to my

table. Now, see, I’ve got the problem table. Now, see, I’ve got the problem

solved. I’ve got this tea trolley I made solved. I’ve got this tea trolley I made

years ago. It’s got four castors, but if I years ago. It’s got four castors, but if I

take the back two off, build it up with a take the back two off, build it up with a

bit of wood, like, so it doesn’t slide. bit of wood, like, so it doesn’t slide.

There’s plenty of timber down the shed. There’s plenty of timber down the shed.

And I’ll put on handles, screw them into And I’ll put on handles, screw them into

the side, I can hold on and walk round the side, I can hold on and walk round

with my tea trolley, push, stop, push, with my tea trolley, push, stop, push,

stop, like so. I’m looking forward to stop, like so. I’m looking forward to

going home. It’ll be an adventure!going home. It’ll be an adventure!

When I first met him he was relatively realistic, saying he didn’t When I first met him he was relatively realistic, saying he didn’t

think that he would cope at home as he was. The more think that he would cope at home as he was. The more

conversations I had with him, the less he seemed to conversations I had with him, the less he seemed to

understand what we were getting at and that he wouldn’t be understand what we were getting at and that he wouldn’t be

able to go back to how he was originally. …able to go back to how he was originally. …

Eventually, we said you’ve got options: either go home as you Eventually, we said you’ve got options: either go home as you

are but agree not to undertake any kitchen activities, or if you are but agree not to undertake any kitchen activities, or if you

want to be independent, you’ll need adaptations to the kitchen want to be independent, you’ll need adaptations to the kitchen

to allow you more space to manoeuvre. He said he just to allow you more space to manoeuvre. He said he just

needed a rail on the work surface, things that we thought needed a rail on the work surface, things that we thought

weren’t so appropriate. weren’t so appropriate. We had to be quite assertive with him

to make him understand where we were coming from.

We had to be quite assertive with him to make him

understand where we were coming from and why we were

saying what we were saying…

We had to be quite assertive with him to make him

understand where we were coming from and why we were

saying what we were saying…

Gill went home adamant that she wanted to be upstairs,

which we completely went with because that was her wish.

I asked him whether he wanted me to make a referral to

the [community services] for ongoing rehab at home

because I knew independence was really important to

him. He declined, which was a shame really. I tried to

explain that they could carry on the work that we were

doing in hospital but he still didn’t want it. I was surprised

actually, I really thought that he’d be very keen on that.

The first time I used it, it was the The first time I used it, it was the

wrong move really, because we wrong move really, because we

went to Tesco and Tesco was went to Tesco and Tesco was

busy, and there I was down, you busy, and there I was down, you

know, in this wheelchair and all know, in this wheelchair and all

of these people, I just felt all of these people, I just felt all

these people coming towards these people coming towards

me. And it was like – oh, I had me. And it was like – oh, I had

no control. It was terrifying, no control. It was terrifying,

absolutely terrifying and I just absolutely terrifying and I just

wanted to get out.wanted to get out.

““Collaborative goal-setting and review is pivotal to Collaborative goal-setting and review is pivotal to

good occupational therapy practice. It is clear that good occupational therapy practice. It is clear that

inappropriate or unrealistic goals will result in inappropriate or unrealistic goals will result in

frustration and dissatisfaction”frustration and dissatisfaction”

Pearson Pearson et al. et al. (2007)(2007)

I’ve had to give up my allotment, which I’ve had to give up my allotment, which

makes me feel sad. That was one of my makes me feel sad. That was one of my

breaks from work and everything else, breaks from work and everything else,

to go down there and amuse myself for to go down there and amuse myself for

two or three hours, like winter digging, two or three hours, like winter digging,

that sort of thing. But now I can’t stand that sort of thing. But now I can’t stand

and move without a frame. Perhaps I and move without a frame. Perhaps I

could hold on to a fork to steady myself, could hold on to a fork to steady myself,

but then I couldn’t dig. But I have two or but then I couldn’t dig. But I have two or

three ambitions that I three ambitions that I will will achieve. Not achieve. Not

a question of wanting to, I a question of wanting to, I am going am going to to

achieve them. And the first one – it’s achieve them. And the first one – it’s

the essence of being independent and the essence of being independent and

standing alone – I want to go and hit a standing alone – I want to go and hit a

golf ball. Proper swing, unaided, golf ball. Proper swing, unaided,

followed by a hole.followed by a hole.

Irene and I have always been great Irene and I have always been great

caravanners. I don’t want the bother of caravanners. I don’t want the bother of

a caravan any more, so I’ve just a caravan any more, so I’ve just

recently bought myself a camper van, recently bought myself a camper van,

which means that Irene and I can still which means that Irene and I can still

go away for weekends. I’m organising go away for weekends. I’m organising

some modifications for it: I’m going to some modifications for it: I’m going to

sort out power steering, and I’ll have sort out power steering, and I’ll have

one of those knobs on the steering one of those knobs on the steering

wheel, like the old truck drivers used wheel, like the old truck drivers used

to have, that should sort it out. I to have, that should sort it out. I

believe I’ll have enough movement in believe I’ll have enough movement in

my feet to operate the clutch. I think my feet to operate the clutch. I think

that should work, don’t you?that should work, don’t you?

‘What happens if the patient asks questions I can’t answer?’

‘What if the patient wants to talk about death and dying?’

‘What if something I say causes the patient to become very distressed?

‘What do I do if a patient tells me s/he wants to die?’

Understand what’s motivating the question.Understand what’s motivating the question.

Do not withold information if the patient wants it.Do not withold information if the patient wants it.

Do not impose information if the patient does Do not impose information if the patient does not want it.not want it.

Gauge and respond the patient’s reaction to Gauge and respond the patient’s reaction to what s/he is being told.what s/he is being told.

Irene and I have always been great Irene and I have always been great

caravanners. I don’t want the bother of caravanners. I don’t want the bother of

a caravan any more, so I’ve just a caravan any more, so I’ve just

recently bought myself a camper van, recently bought myself a camper van,

which means that Irene and I can still which means that Irene and I can still

go away for weekends. I’m organising go away for weekends. I’m organising

some modifications for it: I’m going to some modifications for it: I’m going to

sort out power steering, and I’ll have sort out power steering, and I’ll have

one of those knobs on the steering one of those knobs on the steering

wheel, like the old truck drivers used wheel, like the old truck drivers used

to have, that should sort it out. I to have, that should sort it out. I

believe I’ll have enough movement in believe I’ll have enough movement in

my feet to operate the clutch. I think my feet to operate the clutch. I think

that should work, don’t you?that should work, don’t you?

Achieving a good death requires some Achieving a good death requires some forward planning. forward planning.

While people remain well, they may be While people remain well, they may be reluctant to do this.reluctant to do this.

Or… people may anticipate – and wish to Or… people may anticipate – and wish to avoid the ‘horrors of death’.avoid the ‘horrors of death’.

Medline 1966 – present (carried out 02/07/08)Medline 1966 – present (carried out 02/07/08)

Search termsSearch terms HitsHits

““advanced cancer” advanced cancer”

andand

painpain 36553655 37.69%37.69%

nauseanausea 36153615

fatiguefatigue 14511451

breathlessnessbreathlessness 532532

cachexiacachexia 340340

disabilitydisability 104104 1.07%1.07%