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Disability & Rehabilitation in End of Life Care
1. Gail Eva
University of Oxford, and
Sir Michael Sobell House Hospice
COT Specialist Section Neurological Practice
Annual Conference
Newcastle 3rd October 2008
2.
3.
4. The fundamental contribution of
rehabilitation is to enable a person’s
sense of autonomy, self-worth, social
participation and economic self-
sufficiency, in a process led by the
disabled person.
5. Receiving adequate symptom management
Co-ordination and continuity of care
Avoiding inappropriate prolongation of dying
A sense of control, achievement and self-worth
Relieving one’s burden upon others
Strengthening relationships with loved ones
Having an opportunity to say goodbye and bring closure
Singer et al. (1999) Quality End-of-Life Care. Patients' Perspectives. JAMA 281:163-168.
Heyland et al. (2006) What matters most in end-of-life care: perceptions of seriously ill patients and their
family members. CMAJ 174 (5): 627-633.
Aspinal et al. (2006) What is important to measure in the last months and weeks of life? A modified
nominal group study. Int J Nurs Stud 43(4): 393-403
6. Receiving adequate symptom management
Co-ordination and continuity of care
Avoiding inappropriate prolongation of dying
A sense of control, achievement and self-worth
Relieving one’s burden upon others
Strengthening relationships with loved ones
Having an opportunity to say goodbye and bring closure
Singer et al. (1999) Quality End-of-Life Care. Patients' Perspectives. JAMA 281:163-168.
Heyland et al. (2006) What matters most in end-of-life care: perceptions of seriously ill patients and their
family members. CMAJ 174 (5): 627-633.
Aspinal et al. (2006) What is important to measure in the last months and weeks of life? A modified
nominal group study. Int J Nurs Stud 43(4): 393-403
7. To know when death is coming, and what might be expected.
To be afforded dignity and privacy.
To have choice and control over where death occurs.
To have control over pain and other symptoms.
To have access to information and expertise as is necessary.
To have control over who is present at the end.
To be able to issue advance directives to ensure wishes are respected.
To have time to say goodbye.
To leave when it is time to go, not have life prolonged pointlessly.
Age Concern 1999 / BMJ 2000
8.
9. The concept of adjustment in the context of a
deteriorating illness.
Negotiating “realistic” goals with patients and
families.
Providing information in the context of uncertainty.
Being comfortable discussing dying and the
existential concerns that patients have.
Predicting and diagnosing dying.
10. Problems with co-ordination, resources and knowledge:
‘No coordination between neurology and palliative care.’
‘There are insufficient therapists at the local hospice to make it easy
to manage disability.’
‘Specialist palliative care services are reluctant to engage with non-
cancer patients.’
‘The local hospice will not take long term neurological patients until
the very last stages.’
NCPC 2006
11. 5%
1%
1%
2%
2%
Circulatory diseases
3%
Cancer
4%
39%
Respiratory diseases
Digestive system
Injury and poisoning
Mental illnesses
18%
Nervous system
Genito-urinary
Metabolic disorders
Other
25%
13. Prioritising
Pacing
Planning
• What needs to be done in your day or week?
• What do you want to do?
• (What do others expect you to do?)
• How important is this activity to you?
• How much energy do these different activities
use up?
• What can you eliminate or stop doing?
• What can you ask others to do for you?
14. Three Ps
Looking out for, and supporting,
the ways in which patients are
acknowledging and adapting to
disability.
Identifying short-term, achievable
goals and focussing on these.
Encouraging realism without
contradicting patients’ preferred
sense of self.
15. The physiotherapist comes round to offer help with
getting back on my feet. She comes in, sits down in
the living room with me, it's ten in the morning, I'm
still in pyjamas, feeling exhausted, and she says,
‘How can I help?’
And then she has no advice to offer. It's constantly a
surprise to me how very often these professionals
are so unprepared and unhelpful. She has no
advice other than what I realise now is the standard,
‘Take each day as it comes.’ I think that means do
on each day what you feel able to do.
16. My impression is they are just coming around to
see if you want to talk - it's as if all the
professionals think the great need is for patients
to talk about their illness.
Actually, I find I'm desperately looking for practical
advice: what exercise is good to do? any
exercise? none at all? when will I feel normal
again? how much fatigue is a normal amount in
these circumstances? what can one do to
alleviate the fatigue?
“And to every single question the answer is: ‘Take
each day as it comes…’ It’s very tiring talking to
these professionals.”
17. My impression is they are just coming around to
see if you want to talk - it's as if all the
professionals think the great need is for patients
to talk about their illness.
Actually, I find I'm desperately looking for practical
advice: what exercise is good to do? any
exercise? none at all? when will I feel normal
again? how much fatigue is a normal amount in
these circumstances? what can one do to
alleviate the fatigue?
“And to every single question the answer is: ‘Take
each day as it comes…’ It’s very tiring talking to
these professionals.”
18. The concept of adjustment in the context of a
deteriorating illness.
Negotiating achievable goals with patients and
families.
Providing information in the context of uncertainty.
Being comfortable discussing dying and the
existential concerns that patients have.
Predicting and diagnosing dying.
19. A process a person goes
through, following
physical / psychological
trauma, of regaining an
orientation towards
yourself, towards others,
and towards the future
that is compatible with
psychological well-being.
20. Everything has been arranged, from A
to Z. I had the funeral directors
around, chose my coffin. I love my
husband to death, but I love my Mum
and Dad to death as well. And it did
worry me, you know, what’s going to
happen, if I get buried here, it’s too far
for my Mum and Dad to come if they’re
feeling they want to grieve one day
and vice versa, Graham. So I’ve
spoken to both of the vicars who come
to visit me, and although I didn’t really
want to get cremated, I’m going to be
cremated, and there are going to be
two caskets and one will be buried
back home and one will be buried
here…
21. … So I’ve got all of those practicalities,
sorted, you know. I’ve chosen the
hymns, chosen the music I want
played. It’s all done.
So if God forbid, you know, I take a
turn for the worse, today or tomorrow,
everything, you know, the i’s are
dotted the t’s are crossed on the
service and what I want.
22. 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 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 and she’s always taken a bright
outlook on things as far as she can.
23. 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 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 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 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 sorry for herself. She will sit there working on ways of
achieving what she wants.
24. 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
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
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
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
sorry for herself. She will sit there working on ways of achieving what she
wants.
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,
you get on and do it yourself.
25. 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.
26.
27. Three o’clock this morning, there I was
wide awake and my head’s going round
thinking about the old place and what
I’m going to do. How I’m going to get
my rice pudding from the kitchen to my
table. Now, see, I’ve got the problem
solved. I’ve got this tea trolley I made
years ago. It’s got four castors, but if I
take the back two off, build it up with a
bit of wood, like, so it doesn’t slide.
There’s plenty of timber down the shed.
And I’ll put on handles, screw them into
the side, I can hold on and walk round
with my tea trolley, push, stop, push,
stop, like so. I’m looking forward to
going home. It’ll be an adventure!
28. 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
conversations I had with him, the less he seemed to
understand what we were getting at and that he wouldn’t be
able to go back to how he was originally. …
Eventually, we said you’ve got options: either go home as you
are but agree not to undertake any kitchen activities, or if you
want to be independent, you’ll need adaptations to the kitchen
to allow you more space to manoeuvre. He said he just
needed a rail on the work surface, things that we thought
weren’t so appropriate. We had to be quite assertive with him
to make him understand where we were coming from.
29. 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…
30. 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.
31. 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.
32. The first time I used it, it was the
wrong move really, because we
went to Tesco and Tesco was
busy, and there I was down, you
know, in this wheelchair and all
of these people, I just felt all
these people coming towards
me. And it was like – oh, I had
no control. It was terrifying,
absolutely terrifying and I just
wanted to get out.
33. “Collaborative goal-setting and review is pivotal to
good occupational therapy practice. It is clear that
inappropriate or unrealistic goals will result in
frustration and dissatisfaction”
Pearson et al. (2007)
34. I’ve had to give up my allotment, which
makes me feel sad. That was one of my
breaks from work and everything else,
to go down there and amuse myself for
two or three hours, like winter digging,
that sort of thing. But now I can’t stand
and move without a frame. Perhaps I
could hold on to a fork to steady myself,
but then I couldn’t dig. But I have two or
three ambitions that I will achieve. Not
a question of wanting to, I am going to
achieve them. And the first one – it’s
the essence of being independent and
standing alone – I want to go and hit a
golf ball. Proper swing, unaided,
followed by a hole.
35. Irene and I have always been great
caravanners. I don’t want the bother of
a caravan any more, so I’ve just
recently bought myself a camper van,
which means that Irene and I can still
go away for weekends. I’m organising
some modifications for it: I’m going to
sort out power steering, and I’ll have
one of those knobs on the steering
wheel, like the old truck drivers used
to have, that should sort it out. I
believe I’ll have enough movement in
my feet to operate the clutch. I think
that should work, don’t you?
36.
37. ‘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?’
38. Understand what’s motivating the question.
Do not withold information if the patient wants it.
Do not impose information if the patient does
not want it.
Gauge and respond the patient’s reaction to
what s/he is being told.
39. Irene and I have always been great
caravanners. I don’t want the bother of
a caravan any more, so I’ve just
recently bought myself a camper van,
which means that Irene and I can still
go away for weekends. I’m organising
some modifications for it: I’m going to
sort out power steering, and I’ll have
one of those knobs on the steering
wheel, like the old truck drivers used
to have, that should sort it out. I
believe I’ll have enough movement in
my feet to operate the clutch. I think
that should work, don’t you?
40. Achieving a good death requires some
forward planning.
While people remain well, they may be
reluctant to do this.
Or… people may anticipate – and wish to
avoid the ‘horrors of death’.
