Examination of Witnesses (Questions 159
- 179)
THURSDAY 6 MAY 2004
DR KERI
THOMAS, MS
CORINNE LOWE,
MRS ROWENA
DEAN AND
MS SUZY
CROFT
Q159 Chairman: Can I welcome you
to this session of the Committee, and to all our witnesses our
thanks to you for coming before the Committee and for your written
evidence, which is very helpful. Could I ask you briefly to introduce
yourselves to the Committee, starting with you, Dr. Thomas?
Dr Thomas: I am Dr Keri Thomas.
I am a GP with a special interest in palliative care, National
Clinical Lead in Palliative Care with the Cancer Services Collaborative
of the NHS Modernisation Agency, a Macmillan GP Advisor, and I
run a programme called Gold Standards Framework.
Ms Lowe: I am Corinne Lowe. I
am a Member of the National Executive Committee for The Community
and District Nursing Association. I am presently a District Nurse
Team Leader Community Practice Teacher, working in South Devon.
I am obviously very experienced in palliative terminal care, with
a great interest.
Mrs Dean: I am Rowena Dean. I
chair the National Forum for Hospice at Home. I am also the Chief
Executive of a Standalone Hospice at Home Service, the Iain Rennie
Hospice at Home.
Ms Croft: I am Suzy Croft. I am
a social worker at St. John's Hospice, which is the hospice for
central London. I am the Chair of the Association of Hospice and
Specialist Palliative Care Social Workers, and a Trustee of Help
the Hospices.
Q160 Chairman: Are you connected
to BASW or are you a completely separate organisation?
Ms Croft: We are a separate organisation.
Q161 Chairman: Can I begin with Dr
Thomas? Not only because you have a connection with God's own
county, of course! I was interested in your comments on the Canadian
experience and you talked in there about the issue of a national
strategy in Canada for end of life care. I wonder whether you
can say any more about how you view that working? Obviously we
have not been to Canada to look at it, but I was interested in
some of the examples of policy that you give, and whether you
feel that there are certain points in that strategy that we might
take on board in looking at what we need to do in the UK.
Dr Thomas: Yes. I think we have
done wonderful things in this country with specialist palliative
care, and led the world in that, but it is very interesting when
your horizons are raised and you see what other countries are
doing, and I am actually going to Canada in the summer to learn
a bit more about it, so I will be able to say more later. I have
learnt more about the Swedish and American models. I think what
Canada has done has integrated end of life care as part of mainstream
health care. They are recognising that end of life care is important
and then they are integrating it into various parts of their thinking.
So there are policy developments such as compassionate leave for
six weeks for a carer when someone dies; there are educational
policies all the way through; and there is a virtual hospice of
specialist palliative care advice. I think really the shift appears
to me on the outside to be that end of life care is important
and we are going to recognise it and not run away from it and
do something about it, and it feels that that is an important
thing to recognise and maybe learn from. So I hope to learn a
bit more after the summer, when I am going to be meeting the Senator
and learning a bit more about it.
Q162 Chairman: One of the things
that we discussed in the last session with the witnesses was the
way in which the climate of the discussion of death perhaps has
a bearing on the policies that emerge from government, and certainly
in recent times we have not been able to encourage an open attitude
to death and dying and some of the issues that need to be discussed
to address the policy questions. From your knowledge of Canada,
do you feel that their climate is somewhat different in that respect
and, if they have established a different climate, how have they
gone about doing it?
Dr Thomas: It appears on the outside
that they have shifted some of the thinking, a recognition that
we all die and that 100% mortality is an immutable fact and it
is not actually a sign of failure; in fact, I think it is a sign
of success if we care for people, as they are dying, well; and,
as Nigel Crisp says, the care of the dying should become a touchstone
for success in modernising the NHS, that actually it is a sign
of success. So maybe it is a shift in thinking, a time actually
to say that we should address the fact that the way we care for
people as they are dying is important, and all the other things
follow on from this. From Joanne Lynn's work in America, I have
learnt quite a lot about the way that they are grouping it into
three different patients, looking at trying to build the care
health system around the cancer patient, the organ failure patient
and the gradual dementia decline patient. Her thinking is why
have we not been able to build a health care system around these
patients yet, why are we leaving it up to luck still, and, if
we can, restructure our health care system to cope with these
three groups of patients and put a standard and a reliable system
in place for them. Choice is important but actually they need
one reliable option, and why are we not doing that yet? Probably
because we have not previously been in this situation before;
we have not had to face the kind of problems that we are facing
now, with changing demography, long periods of illness, fewer
carers, people living longer sicker. So things are changing so
much that we are at a really critical point now. That is what
I sense within the NHS now, a shift which is really exciting,
to acknowledge that it is okay to talk about death and dying,
and the way that we care for dying people is becoming very important.
Q163 Chairman: Do any of the witnesses
have any comments on this general point, or any knowledge of the
Canadian situation?
Ms Croft: Sorry, I did not hear
the question.
Q164 Chairman: I wondered whether
any of you wanted to add to anything that Dr Thomas has said about
the point about the strategy developed in Canada, if you have
any knowledge of that strategy or any thoughts or knowledge of
a similar exercise in the UK?
Mrs Dean: The only comment I have
is that my understanding is that the Canadians have a particular
minister for palliative care.
Q165 Chairman: Yes.
Mrs Dean: The other thing I think
they do extremely well over there is the communication skills
work that they do at all levels with the medical staff and nursing
staff, so that the communication around what we were saying about
communicating death and not being afraid to address it is part
of their curriculum.
Ms Croft: I would add that I think
one of the problems perhaps in this country is that issues around
death and dying need to start right at the very beginning, and
I do not think those issues are tackled very well in school, not
from my experience and my children's schooling. I think even discussions
around cancer, and so on, the fact that people sometimes die of
it is missed out. I think there are issues around familiarising
children with the idea of death and dying and not being afraid
of it and opening up discussions. I think one of the problems
around hospice and specialist palliative care is that people are
frightened of hospices because they think they are all about dying,
although they are not; but they do not actually know what specialist
palliative care means either. So in a sense we are not necessarily
reaching people and including people in our services and what
we are doing and what we are about. A lot of people do not really
understand what hospice and specialist palliative care is or can
do or is about. I really do think that end of life has to start
with the children and including them in those discussions, and
I do not think that really happens now.
Q166 Chairman: You have not seen
the evidence that was taken last week where I raised this as a
question. Having embarrassed a teacher when I was about nine years
of age giving my news of the week that I had seen a dead body,
an elderly aunt, in a coffin, this teacher was totally silenced
and did not know how to respond to that. It struck me at the time
that it is quite a normal thing to talk about and the teacher
could not deal with it, and probably we have not moved on from
what you say.
Ms Croft: I think you are probably
right and I do get enquiries, phone calls, from teachers, schools,
asking for help around individual cases, which suggests that there
are not particular strategies within schools for dealing with
it and the teacher is not sure what to do. If, for example, they
have a child with a terminal illness in their class, "What
shall I do when this child comes to school and how will I deal
with it, what will I tell the other children?" Or if a child's
parent is dying, I think a lot of teachers just do not know what
to do.
Ms Lowe: Also I think that part
of the training for palliative care and dying patients should
be included more so in the basic training for nurses, general
nurses, in their foundation programme. Also, it should be part
of the mandatory update annually for trained nurses. I think it
is most important for that. There are a lot of emotions attached
to staff caring for patients and caring for carers too.
Q167 Mr Amess: Ladies, the Committee
has received a lot of evidence to say that the overwhelming majority
of people would like to die at home, but that is achieved by about
only a quarter of the people. Have you any idea, a hobbyhorse,
what you think needs to be done to make that choice possible?
Ms Lowe: I was reading the previous
report of the Committee and it actually proved, point one, obviously
economically it makes sense for the patient to be at home, apart
from the fact that it is very often the patient's wish and the
carer's wish. If we had adequate resources and manpower, particularly
in the different services attached to palliative care, this can
be achieved, and it is achieved very satisfactorily, but we need
the resources in the community 24 hours a day. A lot of areas
in district nursing have just the basic service from 8.30 to 5.30—no
evening, no night duty. We have GPs on duty, we have GPs on call,
why can we not have nurses doing the same thing, and have the
back-up services of hospice at home nurses and palliative care
nurses? It is not a major problem, and obviously it has been proved
by research that it is not a major expense.
Q168 Mr Amess: Thank you, you have
made that point so clearly. Ladies, do you all agree with that?
Ms Croft: Yes, I think there are
definite gaps, in the provision of social care particularly. Of
course, social care is not free at the point of delivery, as is
health care. I think one of the issues for a lot of our patients
is that either the care is not available because there is such
a shortage of carers, such a shortage of services, or they are
expected to pay for the carer and for a lot of people that is
a big stumbling block. Also, as my colleague says, one of the
real issues for a lot of our patients is that there is no night
care. For example, we had a patient with advanced motor neurone
disease, who had exceptionally good care throughout the day and
also access to our hospice services, but had to come into the
hospice to die because it was absolutely impossible for us to
access night care on a regular basis. I think that is an issue
that faces a huge number of our patients. Sadly, again, one of
the issues, particularly in the London boroughs, is that, as I
said in my evidence, for a lot of people their housing becomes
unsuitable when they are terminally ill, but it is almost impossible
for people to be given transfers or to access other housing and,
if they do so, very often they may get an offer even after they
die. We have patients who come into the hospice over and over
again to die, simply because they cannot go home, their homes
are not accessible, but we know that they will not get a housing
transfer. That is an absolutely huge issue.
Dr Thomas: I think from the current
literature and research the main reasons for a hospital admission
are carer breakdown and symptom control, and it is very common
when they become intertwined; it is difficult to separate them
out—home care breakdown and symptom control. There have
been examples around our country and in other parts of the world
where they have increased the home death rate—if that is
the specific thing you are looking for.
Q169 Mr Amess: Yes.
Dr Thomas: By first of all advanced
care planning, discussing with the patient, which is difficult
sometimes, a difficult conversation, but planning in the same
way that at the early stage of pregnancy, the Blue Line appears
and the antenatal care is planned, there could be some discussion
of ante-mortal care, end of life care. More and more people are
discussing it. So advanced care planning is a much bigger issue
in many other countries, especially in America where they have
advanced care plans as well as advanced directives. So asking,
"Where would you like to be cared for?" when things
deteriorate, rather than the bald question, and then from that
moving in to bring the right system of care. I saw it happen in
Victoria Island in Vancouver, in Canada, and they asked them and
then they move in with a package of drugs, support and 24-hour
care. I have seen it in Toronto as well, where they have patients
information held on a palmtop. So the big shift is to ask the
patient and to plan the care. The second thing to do, as has just
been said, is to deliver the resources to the community because
people want to be able to support people to die at home and no
one wishes it more than the GPs and district nurses. Along with
the patient and their families, they may feel heartbroken when
a crisis happens and patients have to go into hospital as a crisis
admission. That is what people want and it is often the nursing
auxiliaries, the night sitters, the social support that will help
to keep people at home.
Mrs Dean: Can I just give an illustration
of how this can work? In my own area we provide a service which
covers a 24-hour, seven days a week, response at night, and our
home death rate is 79% in some of the areas where we are working.
But it is only possible because we are integrated very closely
with the district nurses, who remain the key worker in these areas.
Integration, I believe, is at the absolute heart of what we are
trying to achieve and I think a lot of the work on Gold Standards
Framework and the end of life initiatives are working very much
towards that, and this is what we have to see. I think we also
have to empower patients and families, to show them that they
can actually care at home and they can stay at home; I think there
has to be a lot of empowering. People think, "I cannot do
this," but if you empower them you can show them that they
can. Where there is 24-hour care you can respond with a visit,
or you can just speak to people on the phone—often a phone
call, from my experience, can make a difference to somebody in
the middle of the night. It is a pretty scary time in the middle
of the night and if you can have someone on the end of the phone
nurses may not have to go out; but you will need to have that
service there if you do need to go out. That is when you will
see the change in the home death rate.
Q170 Mr Bradley: Could I clarify
what you were saying about transfer from their home to another
property? My experience is that people actually want to stay in
the home that they have lived in for a long time and want support
services and appropriate adaptions within that, and the last thing
they actually want is to transfer to another property at the end
of their life. So I was quite surprised you were saying that that
is a problem, that people actually want that transfer out of their
property. Could you clarify that, please?
Ms Croft: Of course, the end of
their life might be quite a long time and we might be working
with people for longer periods than a few weeks. Of course your
point is very valid, a lot of people desperately seek to remain
in their homes. However, I think there is no doubt that one of
the issues in perhaps more urban areas, and again probably in
some rural areas, is that people's homes become unsuitable because
they become disabled in some way, and whether they want to stay
in their own home or not they accept, they realise that it would
be better to transfer to a more suitable property which will enable
them to stay at home with their families in the way that Rowena
was talking about, actually within their own communities, trying
to lead their lives as normally as possible and do the things
they would always do. However, a huge sticking point will be that
they simply cannot do that. I can give you a very good example.
I was working with a woman who became paralysed because she had
something called spinal cord compression, and she became homeless
in hospital because the flat that she was living in with her father
and her six-year old daughter had a big flight of steps up from
the street to the front door and then three flights of steps from
the front door to her front door and none of the doorways in the
flat were wide enough for a wheelchair. So she literally could
not go home from hospital. In fact she never was re-housed because
there was no suitable accommodation for her. The London borough
concerned did its best and actually put her up in the Holiday
Inn, but that is not really what people want to do. She wanted
to go to her flat with her father and her six-year old daughter,
and the end of her life was spent not actually within her family,
which is what she wanted. Her case is not unusual; I wish it was,
but it is not. I think that is the issue, that when people really,
really, really need alternative accommodation it is just not available.
Clearly, we seek always to maintain people in the homes where
they have always lived and want to stay, but the sad truth is
that if that is not possible then the alternatives are not there—people
cannot get transfers.
Q171 Mr Bradley: The reason for making
the point, I represent an area in Manchester where the only way
you get a transfer out is away from the community you serve because
of the popularity of that area, and the adaptions to the home
and the support in the home where they have always lived has always
been a higher priority than moving someone away from the area
in which they have always lived.
Chairman: David, have you completed your
questions?
Mr Amess: I think so because the ladies
were so articulate that they did not even have to think about
the solution. Excellent.
Q172 Chairman: Can I ask Dr Thomas,
from your evidence you have talked about, "institutionalised
hospice care for cancer patients can tend to dominate palliative
care in this country." You also argue that we need to be
able to offer one reliable option, rather than a range of options
that are less reliable. I am interested in the point you are making
and also your thoughts on the historical background to the hospice
movement and how that impacts upon the nature of the provision
that we have. I am conscious that Alan Milburn MP is making a
speech today, suggesting that we go back to charitable involvement
in the Health Service, which some of us might raise questions
about, to put it mildly, but one of the problems that we picked
up from the fact that we have a charitable, voluntary aspect is
that the equity issue is not there; that you often have good palliative
care provision in areas that need it less than others that have
nothing. Can you expand a little on the point that you made in
your evidence that tie into some of the wider points on that?
Dr Thomas: I want to pay tribute
to the fact that we have a very brilliant system here that leads
the world in specialist palliative care areas; many people come
to this country to see how it has developed. I just feel that
we are at a really pivotal time now and it could be that we have
become a little bit fossilised and institutionalised, resting
on our laurels as we have such good specialist palliative care
access to support. Actually, when you look at other countries
what they are doing is making end of life or palliative care more
available to other people, and my main role in supporting generalist
palliative care, ie people who are doing other things apart from
palliative care. Generalists, GPs, district nurses, ward staff,
care home staff are the people who give the majority of care towards
the end of life. So even though 15 to 20% of patients might be
under the care of a specialist how do we up-skill and enable ordinary
non-specialists, generalists, to deliver the best kind of care?
The Gold Standards Framework is trying to put a framework in place
so that people are empowered to deliver better care. We have shown
that people are doubling their home death rate and increasing
the number of patients who are asked where they would like to
be cared for. I think the main point is to bring it back to the
end of life initiative because palliative care has tended to mean
only specialist palliative care, leaving it up to the specialists.
We are talking about supportive care now, which is support right
from diagnosis, and we are talking about end of life care. So
they are big concepts and each one seems to be bigger than the
previous one. What I would love to see—it is a very crucial
time now, when you can see the growth of the hospice movement,
hospices in almost every place in the country, largely voluntarily
funded, some NHS—would be to get the best of care that you
can get in a hospice, mainstream within the NHS. One of the examples
is of voluntary units, where people have seen the need and developed
a service, but that increases the lottery of care sometimes; it
should be the same for someone in Barnsley as in Bournemouth.
It should not be diagnosis led, it should be on the basis of need.
I would say that this is the time to learn the lessons of the
strengths that we have and to learn lessons from other countries
and start mainstreaming some of the best examples.
Q173 Chairman: Are you implying that
the existence of hospices and the focus on hospices has held back
the development of palliative care aware from the institutional
settings that you have described?
Dr Thomas: There has sometimes
been a feeling amongst GPs who have been doing this for a long
time that they were de-skilled, and district nurses have had that
tensions sometimes, when Macmillan nurses and others may appear
to take over care and de-skill them.
Q174 Chairman: So you think as a
consequence of the development of hospices and palliative care
that mainstream people have lost out?
Dr Thomas: I am saying that as
a caveat. They did feel that initially, but I think it is shifting;
I would not like to say that that is where we are now. I think
that more and more people are moving to working well together,
and what I would love to see is high quality mainstream generalist
palliative care provision on this, we need to have people on the
ground such as nurses available at night, we need to have people
working to an agreed planned protocol, and the back-up of advice
and education and support from specialist services. When we dovetail
it all together there should not be a problem. There was an initial
feeling by many GPs who have been working in the area for many
years, who have cared for the dying for many years, "Who
are these specialists, hand them over to them," whereas actually,
especially in rural areas, the GPs are pivotal in this area, and
for district nurses it is a very large part of their role. So
it is about using generalists skills to the maximum and to back
them up with specialists support advise and resources. I think
it can be done; I am not negative about it, I think it really
can be done.
Q175 Chairman: So in a sense demystify
palliative care and mainstream it more?
Dr Thomas: Play to people's strengths,
the things that they do well, up-skill them and then show them
where they can maybe best use the specialists, and mainstreaming
good palliative care as standard practice, but working closely
together. We have lovely examples of where that happens, when
they work closely together there are more appropriate referrals
to specialists. We do not have enough specialist palliative care
consultants and nurses anyway to cope with the whole issue.
Q176 John Austin: I want to come
back to a point which Suzy Croft mentioned in reply to another
question from David Amess. It is a common feature of many of the
inquiries in the areas we are making, which is the boundary between
health and social services, and particularly the point you raised
about the free as opposed to the means-tested service. It has
also been suggested that the priorities and the pressures and
the requirements on local authorities differ very much from those
on health authorities, and you said in your evidence that the
boundary in palliative care is blurred and frequently contested.
I wonder if you would like to expand a little more on that, and
also on the question of where you refer to somebody being diagnosis
led, that not only do we have a postcode lottery but we have a
diagnosis of disease lottery in terms of what services might be
available, particularly for those who have a long-term period
of dying. Perhaps you could expand on some of those boundary issues?
Ms Croft: Yes, I think it is an
issue in specialist palliative care that people access services
when they have certain diagnoses, and I know that generally people
with cancer, HIV, Aids, motor neurone disease, will access specialist
palliative care, whereas people with, for example, end-stage heart
disease may not. For example, our hospice made the mistake a few
years ago of having an Open Day, where a lot of people turned
up and said, "We did not know you were here, can my husband
come here?—No, sorry, he cannot because he has had a stroke
and we do not take patients like that." I think that is very
inequitable, but I think that hospices are very aware of that
and I think a lot of hospices do seek now, a lot of specialist
palliative care services are seeking to expand their boundaries.
I think it is a real issue and I think that people with other
end-stage diseases very often lose out on the support which others,
if they happen to have a diagnosis of cancer, are getting. I think
there are other issues. I think patients from minority ethnic
groups also are not always accessing services in the way that
they should, then if they do access services—and at our
hospice we have a large number of patients from different minority
ethnic groups, as we are the hospice for central London—those
patients then often do not get the services in the community.
For example, Bangladeshi patients will not be accessing services
within the community because there will not be services which
may be offered to them in their language. So that we may be able
to access patients to other services but we cannot access them
to other services because the services do not exist. So they may
come to the day centre, but, again, although we can use interpreters
on an individual basis we are not going to be able to afford to
have an interpreter with somebody throughout the day in the day
centre. So they may not even access all of our services and I
think that is a real issue for people, that the social and community
services, particularly for minority ethnic groups, are deeply
lacking within the community. Again, that would probably be because
individual local authorities cannot necessarily afford those services
or do not necessarily see them as a priority. So I think that
there are certain groups of people who are failed, if you like,
by the services simply because they are not able to access them.
Or we find that GPs, hospitals, do not even refer people to our
services, perhaps still making assumptions that certain minority
ethnic groups come from extended families and that the family
will look after them, and so on. I think that still happens. I
think those are real problems in terms of people not accessing
services.
Q177 John Austin: I am grateful for
that because you have answered a number of questions we are going
to put to the witnesses in the second half as well, particularly
in relation to access for minority groups. On the boundary issue,
between social services and health, we are moving in terms of
elderly people to a single assessment service, and do you think
that is something which should be extended to all age groups,
particularly those with a terminal illness?
Ms Croft: Yes. I think that probably
would be helpful. However, I think again that it is partly about
the issue of resources, in a sense, and is it a genuinely needs
led assessment because obviously resources are always there in
the background? I think one of the issues that we cannot help
but notice when local authorities are assessing people, is that
they are assessing it very much often on the basis of what resources
they know are available and what they are going to be prepared
to spend. With a lot of our patients we find that really we are
underpinning the services. Implicitly they know the hospice is
there; they know we are not going to chuck people out when there
is nowhere to go or the services have not been set up, and we
never have discharged somebody when we know there are no services
available. I think they know that will happen and one of the issues
always is resources. Of course there cannot be infinite resources,
but I think that issue cannot be neglected.
Q178 John Austin: In terms particularly
of those people who have a longer-term need for supportive and
palliative care, is there an argument for an integrated palliative
care service with a pool budget of social services?
Ms Croft: Absolutely.
Ms Lowe: If I could just put in
proportion the previous question you asked? We have recently had
to do audits of our caseloads and 68% of my caseload is chronic
illness patients, and 20% were terminally ill patients—palliative
terminally ill. The chronic and the palliative merge because there
is no actual cut-off line; you cannot be palliatively nursed;
you cannot tell when people are going to die. As far as a single
assessment is concerned, I think we are all working towards that
and I think that is going to be really helpful. We are already
doing shared assessments, at the moment very limited on terminal
palliative care patients, with social services.
Q179 John Austin: Is that in your
area?
Ms Lowe: That is in my area. I
think it is happening in other areas but it is very spasmodic
at the moment. We are proving that it is working; it has been
very effective. We are getting to know our social services colleagues,
they are getting to know us, we are working much better together.
As you know, face-to-face contact is better than a telephone call.
Our social services have just undergone a change of premises,
change of management and everything, but we are still holding
on to that little bit at the end of it, and it is building up
again. So it really is important for us all to work together,
and the voluntary sector as well—not that we have a lot
of volunteers in the community. In my surgery, for example, we
have set up a caring group and we do ask for volunteer sitters
to give our carers a break just to go and shop or have a dental
appointment or something like that. Relying on volunteers, it
just seems that they are propping up the service that is very
under-funded and under-resourced.
Dr Thomas: I would just like to
add on the point of diagnosis, which you mentioned before, because
I know of cardiologists who feel that there is a palliative care
apartheid because traditionally 98% of hospice inpatients have
cancer, and we have had a very cancer focused system with cancer
charities and various other things. In other countries, I think
in America, it is something like 15 to 20% of inpatients have
heart failure, so they are treating heart failure patients perhaps
in the same way as cancer patients. I think we acknowledge the
needs of patients with other end stage illnesses than cancer and
it is moving but it has not got there yet. We are not treating
heart failure patients in the same way. There was one patient
who said to me, never to be forgotten, "Do I have to have
cancer to get this kind of care?" The truth was, they did.
The way I have tried to describe it with GPs is that every GP
has roughly 20 deaths per year, per GP, of which five could be
cancer, roughly five are due to organ failure, heart failure,
COPD, renal failure etc and seven or eight would be dementia decline,
multiple pathology and three sudden deaths, roughly. So apart
from the sudden deaths (whose families we can support in bereavement),
if we can support each of those three groups in the way that we
are at the moment supporting cancer patients—and we have
to do it differently—then we are beginning to build a health
care system that is supporting all people towards the end of life.
|
