Examination of Witnesses (Questions 1
- 19)
THURSDAY 25 MARCH 2004
PROFESSOR MIKE
RICHARDS, PROFESSOR
STUART TANNER,
MRS JANE
SCOTT AND
MS SUE
HAWKETT
Q1 Chairman: Colleagues, can I welcome
you to this first session of our inquiry into palliative care
and welcome particularly to the witnesses. Thank you for your
written contribution to the evidence and we are grateful for your
attendance. Could I ask each of you to introduce yourself briefly
to the Committee?
Ms Hawkett: I am Sue Hawkett,
Nursing Adviser to the Cancer Policy Team and also Policy Lead
for Supportive and Palliative Care.
Professor Richards: I am Professor
Mike Richards. I am the National Cancer Director, and prior to
being in that post I was Professor of Palliative Medicine.
Professor Tanner: I am Stuart
Tanner. I am a paediatrician from Sheffield and Adviser on Paediatrics
and Child Health to the Department of Health.
Mrs Scott: I am Jane Scott. I
lead on Child Health Policy at the Department of Health.
Q2 Chairman: Can I begin by asking
you to offer just a sort of sketchy overview of what you see as
being the key issues, the central issues, which perhaps, as a
Committee, we should be addressing? I think I speak for most of
the Committee in saying this is the first time I have looked into
this policy area. Many of us, I think, are unfamiliar with this
area and we welcome the opportunity to look at it. Before getting
into some detailed questions, can each of you say briefly what
you think are the key points we ought to be looking at?
Professor Richards: If I may start
on that and then hand over to Professor Tanner to deal with the
child health care aspects of it. First of all, can I say that
the Department of Health and all four of us welcome this inquiry.
It is an extremely important topic. Over 500,000 people die in
England each year. Most of those people die of some form of chronic
illness, it may be cancer, it might be heart failure, lung disease,
Alzheimer's, a whole range of different diseases, and most people
die in old age. That may sound a very obvious comment to make
but it has not always been the case. In fact, over 80% of deaths
occur in people over the age of 65, and I think almost two-thirds
occur in people over the age of 75. There have also been major
changes in society over the past 20 or 30 years, particularly
with more elderly people living alone and fewer living with extended
families. I think it is important to stress that nowadays most
people die in hospital, with around 20% dying at home, and around
20% dying either in a nursing home or care home. On top of that,
there are some hospices, which are an important component, particularly
for cancer patients, where about 18% of cancer patients die in
hospices but overall it is about only 4% who die in hospices.
This is a topic which is a very high priority for Government.
We all want to ensure that there is high-quality care for all
patients, including their families. What I want to do, very briefly,
is differentiate between specialist palliative care services and
general palliative care services, those are services provided,
for example, by general practitioners, district nurses, care home
staff and a lot of staff in hospitals as well. On specialist palliative
care services, we have made major progress in the United Kingdom
over the last 30 years, especially for patients with cancer. This
whole enterprise has been led by the voluntary sector and we have
now a network of specialist palliative care services which covers
the whole country, those are hospices, they are home care teams
and hospital teams. The Government recognises that the voluntary
sector has carried too much of the burden, particularly financially,
and that was the reason why in the Cancer Plan which was published
in 2000 a commitment was made that £50 million would be put
into specialist palliative care services. By 2002 there were concerns
that money was not getting through. At that point, ministers established
a National Partnership Group of Palliative Care. That is a group
which brings together the voluntary sector, the NHS and the Department
of Health. That group recommended that there should be a central
budget for this £50 million, and we are confident now that
money is getting through. The National Partnership Group is focusing
now on other long-term issues, because there are still a number
of major challenges, which obviously you may wish to explore.
Q3 Chairman: What do you see are
those challenges, could you itemise three or four of the main,
key points?
Professor Richards: For specialist
palliative care, I think there are the funding issues, there are
the needs of known cancer patients, how best we balance service
provision across the country and ensure that it matches the need
of patients, and there are issues to do with the specialist workforce,
which we acknowledge is too small. Equally, for general palliative
care there are issues also. Most patients spend a lot of their
life at home, particularly in the last year of life, or in a care
home. The problem there is, very often, that the staff who are
looking after them may not have received any training in palliative
care. I think that the particular challenges there relate to skilling
up staff, working in all sectors, whether that is in hospitals,
in the community or in care homes, making sure that we do provide
optimal symptom control and psychological and social support,
making sure that we assess patients' needs properly and then that
we deliver well co-ordinated care. That is care co-ordinated between
both daytime and out of hours services, between the hospital and
the community, between health and social care, so that, wherever
possible, we can enable patients to live and die in the place
of their choice, which for many is at home, if that is possible.
We have set in place a range of initiatives to tackle these issues,
which we have set out in the memorandum. They include the guidance
which has been published just this week by the National Institute
for Clinical Excellence, the Older People's National Service Framework,
which emphasises particularly the need for single assessment processes,
the whole emphasis within the Department of Health and the NHS
on chronic care management. We have been providing training to
district nurses in palliative care over the past three years.
We have announced recently that there will be a new End of Life
Care initiative, and there is £12 million funding over the
next three years for that, which really is aimed at skilling up
staff working in the community and general practices and in care
homes and hospitals, using validated tools for that, the Gold
Standards Framework in the Liverpool Care Pathway.
Q4 Chairman: I would like to bring
in some of your colleagues on the same questions, of which helpfully
you have painted a broad picture, and you have identified also
what you see to be the key areas of challenge. Do any of your
colleagues want to add to that, or differ, or emphasise different
areas of which perhaps we need to be aware, from your own point
of view?
Professor Tanner: Can I speak
briefly to the paediatric and young people's issues, because there
are differences, which I can outline briefly. Firstly, a relatively
smaller number, about one in 1,000 children, have a life-limiting
condition, of whom perhaps 10% die each year, say, 1,100 children
per year. The difference from the adult disease spectrum is that
only 40% of those would be cancer, perhaps 20% due to congenital
heart disease and its sequelae, and the rest a very heterogeneous
group of disorders, mainly neurological and developmental, of
course.
Q5 Chairman: In terms of a comparison
with adults, what is the proportion who would die at home, is
it smaller than the 20% mentioned by Professor Richards?
Professor Tanner: We have figures
for deaths at home for young children, people with cancer, and
it is higher. That does require, of course, a great deal of support
at home, but perhaps that issue of dying at home, care at home,
is one we might develop in further conversation, because it is
very important, as you say. We are facing a changing situation.
For example, a condition like cystic fibrosis used to be a paediatric
terminal care problem, now the majority of cases of cystic fibrosis
stay into adult life and so there is a changed need. The same
is true, to some extent, of Duchenne muscular dystrophy. Then
we have new problems, like AIDS, which appear and then, we hope,
regress as retroviral treatment becomes effective, so changing
provision. Another point I would like to emphasise is that for
some of these children we are talking about a requirement for
care for many years, and clearly there is a continuum between
general care, respite, palliative care and terminal care. We would
hope that the ethos of palliative care, ie placing the patient
at the centre, holistic care for a patient, family care, multidisciplinary
care, should pervade all childcare services and thus there was
more of a continuum, I would say, between care and palliative
care in children's services. Different models of care have evolved
and, by and large, I think, children and young people tend to
stay under the care of their treating clinician, with the input
of multidisciplinary teams. We note with pleasure the growth in
community, nurse-led teams providing specialist palliative care,
and we have now a small but increasing number of specialists in
paediatric palliative care, whose role we may discuss further.
Care is delivered in many settings—home, school, hospice
and other respite services—and we appreciate greatly, echoing
Mike's comment, the positive contribution of the voluntary sector.
We feel that an ideal service is one which brings all of these
players together, delivering individualised care packages, formalising
standards and quality assurance, so important. You asked for challenges
and I think I would enumerate these: firstly, the workforce across
all specialties; related to that, training; thirdly, integration
of agencies and care providers; and, finally, commissioning.
Q6 Chairman: Thank you. Professor
Richards, can I pick up your comment on the number of people who
die at home. I had the impression that during my lifetime we had
gone full circle, to some extent, from the 1950s, when I recall,
as a child, what I thought was a much more open view of death,
and certainly you saw more people, when I was a child, dying at
home, that was my experience. Then we moved to a much more clinical,
hospitalised approach to death, and I have got the impression,
anecdotally, that perhaps we are moving back the other way, but
the figures would appear to suggest otherwise. How do you view
it?
Professor Richards: I think, if
one takes a whole century look at it, a century ago probably 90%
of people died at home. By the middle of the last century it may
have been down to about half of all people dying at home, and
more recently it is between 20 and 25%. I think quite a major
factor here is the ageing of the population and the changes in
society, with more people living alone and fewer people living
with extended families. I think that has a very major impact on
it.
Q7 Chairman: Presumably, that is
the reason why there are more children dying at home, because
they are being brought up by their families, the family unit.
Would that be a factor?
Professor Tanner: Yes. Just to
give you the figures, this is 1995-99, children and young people
dying of cancer in the 0-15 age range, hospital 43%, home 52%,
hospice 3%. In the 16-24 age band the figures are hospital 58%,
home 30% and hospice 9%.
Q8 Chairman: Coming back to the trends
again, we have been told that around 56% of people express a personal
wish to die at home, and yet we have only 20% actually doing so.
What are we doing to address the fact that repeatedly we are denying
people what they want to do?
Professor Richards: What we are
doing is looking at the range of services that people need to
enable them to spend more time at home or to die at home, if that
is what they choose. That includes medical services, GP services,
in particular, also it includes nursing services, the district
nursing services and social services. Getting all of those integrated
properly, I think, is the key element, also making sure that they
are available 24 hours a day.
Q9 Chairman: We have all seen these
improvements. I think it is commendable that at a local level
we can see the teams working to enable people to die at home,
but the progress which has been made in developing that service
within the community does not appear to be reflected in the figures
of people actually dying at home. Would you accept that?
Professor Richards: I would accept
that.
Q10 Chairman: Then what is the reason
for the difference?
Professor Richards: I think many
of our initiatives, particularly related to the general aspects
of palliative care, are only just getting underway. The Chronic
Care Management initiatives, the End of Life Care initiatives,
those are new initiatives and they have not yet got them sufficiently
far underway to see any impact of them in practice. We hope that,
through those, we will skill up the necessary workforce so that
they can do that better.
Q11 Chairman: What are your thoughts
on ways in which we can make it more socially acceptable perhaps
to talk about the issue of dying and dying at home? It is not
something as a Committee we have talked about, it is not something
that as politicians we talk about, yet we all face that, either
with our families or personally, at some point. Why do we not
talk more about it? Is it not possible perhaps to influence an
improvement on these trends by discussing more publicly the process
and the positives that might be involved?
Professor Richards: I agree with
you absolutely.
Q12 Chairman: Then how do we do it?
Professor Richards: That is one
of the reasons why we are working with the inquiry, in terms of
raising the profile of this area, one of the reasons why I welcome
the campaign that is being run by Marie Curie Cancer Care at the
moment, again focusing very much on how we can raise awareness
of this whole issue and focus the public's attention on it.
Ms Hawkett: One of the initiatives
that we are doing is training district nurses in the principles
and practice of palliative care. I think, again, that raises awareness
and also enables nurses working in the community to feel more
comfortable around people who are in crisis and dying and to be
able to talk with the family and carers about that. That general
initiative, I think, has been very successful in skilling general
nurses and enabling them to communicate more effectively with
one another and other specialist teams and with families.
Q13 Chairman: It has been drawn to
our attention that the End of Life initiative expresses the wish
that all patients should be able to choose to die at home. Is
this realistic, and, if it is, how can it be achieved?
Professor Richards: I think the
End of Life Care initiative is a very good starting-point. As
I have said, it is aimed mainly at skilling up the generalist
staff then spreading good practice. I think we know a lot more
about how to spread good practice within the NHS now than we did
only three or four years ago, through the work of organisations
like the Modernisation Agency and that is what the focus will
be in order to raise the proportion who can die at home. Having
said that, I think this is only a start.
Q14 Mr Jones: We have been told that,
because in the Delayed Discharges Bill those who are having palliative
care are excluded, the exclusion can work to the disadvantage
of these patients and effectively it denies the patients the choices
they might wish to make. Would you like to comment on that?
Professor Richards: The Delayed
Discharges Bill applies at present only to hospitals, not to hospices.
This is an issue which has been raised within the National Partnership
Group on Palliative Care, which I chair. The organisation Help
the Hospices is undertaking a detailed survey now of a small number
of hospices to assess what the size of the problem is, and if
we find it is a big problem then obviously we can make the case
for changing the regulations so that they apply to hospices. It
is a matter of being able to change the regulations, but first
of all I think we need to get the evidence of what impact this
is having.
Q15 Mr Jones: What sort of timescale
would it take you to get that evidence? Since we are doing this
report now, we would like to comment on this possibly.
Professor Richards: We are expecting
it within the next two to three months, so if we can get back
any information from that, or Help the Hospices can, I am sure
we will be able to provide that information to you. That work
has only just begun.
Q16 Mr Burns: You have just said
that you are considering, and presumably out to consultation on,
whether to extend the Delayed Discharges Act to hospices, and
that an announcement will be made shortly. In those considerations,
have you borne in mind also that when the Government brought in
the Delayed Discharges Act of course it came in, due to the House
of Lords, nine months later than the Government had hoped and
they made available, I think it was, £100 million over three
years to pay social services in advance to offset the effect of
the fines, you know, robbing Peter to pay Paul? If it were decided
to amend the rules to extend the coverage to hospices, would you
anticipate, have you discussed, making similar, proportionate
amounts of funding available to offset the fines which might be
caused?
Professor Richards: We have not
got that far, frankly, with the decision-making, because I think
the first step is to assess what the size of the problem is. If
we can get a clear idea of the size of the problem we will take
that back to ministers and a decision will be made about whether
the regulations need to be changed.
Q17 Mr Burns: When would you anticipate
an announcement being made, roughly?
Professor Richards: I cannot give
you an exact date for the announcement. What I can say is that
Help the Hospices are doing that piece of work and we anticipate
that piece of work will be done over the next two to three months.
After that, obviously, we will make recommendations to ministers
as soon as we can.
Q18 Mr Jones: How many patients each
year, once their symptoms are dealt with, cannot go home but they
are not dying imminently? Do you have any sort of figure for that?
Professor Richards: I do not think
I have a figure for that. Certainly, from my knowledge of cancer
patients, that can be a problem, particularly when people have
got several months of life ahead of them, particularly patients
with secondaries in the bone, or patients with brain tumours,
and those patients can need a lot of support over the final months
of their life.
Q19 Mr Jones: Where do these patients
go, generally, do they go to care homes?
Professor Richards: Some will
go to care homes, there is a limited number of hospices which
take patients over that sort of time, and some of them remain
in hospital, which is not necessarily optimal.
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