I’m returning to Byran Driver’s comment, so I’ll mention
again how this comes about.
A comment, from Byran Driver,
has come in about a post a while ago on 19th July; the comment is
attached to the post, but I’ll reply in this new post:
I have recently been reading your blog and I was wondering
if you could expand upon your point that you do not believe in palliative care
and the hospice movement?
What I said was:
I don’t totally believe in palliative care and the hospice
movement.
This was as part of one of my musings around the time that I
retired from working in a hospice (actually, St Christopher’s, the original
hospice of the ‘modern’ hospice movement). Link to St Christopher's Hospice
Yesterday, I talked about the priority I give to social work
in my life: this post is about palliative and hospice care. Although until
recently I’ve been working in a hospice, I have my doubts about hospices and
palliative care. The reasons are that I’m doubtful about hospices because I
think people should die in as natural a way as possible as part of their families
and community, not in some specially designated place. And I’m doubtful about
palliative care because it focuses on a small number of dying people who have a
major diagnosed illness so that they can be treated as a separate group, and as
a medical specialty it has displaced good community end-of-life care for
everyone who is coming up to the end of their lives. And especially older
people, who lose out because of palliative care’s emphasis on cancer and other
major illnesses, instead of supporting good community provision for all older
people that also includes the dying process.
Let’s start with hospices. Hospices started up based mainly
on a model of end-of-life care provision which came to be called ‘palliative
care’ and, when it became a medical specialty, ‘palliative medicine’. An
important strand in the founding their founding was the work of Dame Cicely Saunders
at St Christopher’s Hospice, in south London, where I worked. She looked at
care of people dying of cancer in hospital and community services during the
1950s and thought it was inadequate. She founded St Christopher’s to
demonstrate her ideas. Combined with many other people’s thinking and research
at the time, this led to an expansion of palliative care.
In the UK, this led many local volunteers who liked her
ideas to campaign and fund-raise for a local hospice. As the creation of many
different local voluntary organisations, they come in various shapes and sizes
but they all combine this idea of medical and nursing care to manage pain and
other difficult symptoms with concern for the psychological, social and
spiritual needs of the patients as they go through the dying process. Most of
the provision in the UK is still in local voluntary hospices.
The first point to make about this is that it is not the same
in many other countries. Many of them do palliative care mainly in hospitals or
mainly in the community visiting people in their own homes. There are lots of
hospices round the world, but putting up a specialised building is not easy or
always the best choice in many situations.
Neither would Dame Cicely be all that keen on a universal
adoption of this model. She founded an organisation and a building so that she
could experiment outside the main state system of healthcare in the UK. But her
aim was to influence all health and social care so that it dealt with the dying
process better. Her commitment was to good care of dying people, not necessarily
to create hospices.
And to some extent, setting up separate organisations and
buildings cuts off care of dying people from the mainstream of services, it
almost says: ‘To die well, you need some special place to die in.’ But no
health service was going to fund separate places to die in for most people, so this
is not the message we want to give. We need to say: ‘The dying process is
important to people and their families and we need to handle it well everywhere’.
Separating off places to die is unhelpful, but to get finance for an
experimental service, it helped to have a building with wonderful facilities,
because you have something to show people for their money. It’s an important
part of fund-raising. It also came at the time (the mid-1960s) when communes
and therapeutic communities were in fashion, so caring for people in special
buildings seemed a good idea. Now people are less keen on institutionalised care,
and we know it is difficult to keep up a good standard: just look at all the scandals
about care in hospitals and care homes.
The voluntary/charity/3rd sector organisation of
hospices is also unhelpful. They have to
raise funds (the National Health Services only provides a small proportion of
the costs – it varies but can be 30% or less). So they have to harp on about
how special they are, when really what we should be doing is making the
experience of dying special wherever it is. And they have to sell themselves by
claiming how important their role is, when really they should be cooperating
with the NHS to ensure that their role disappears.
Added to that, the selling process sentimentalises and
separates dying. It’s not normal life: it’s medical and that means it requires
professional help rather than being part of the normal life of the family. And
it has to be lovely, in a nice environment, with specially caring people.
Instead of which, the message should be, it’s a natural part of our lives that
we should prepare for and, given the proper community nursing and medical care,
any family can and should participate in the process in as natural a way as
possible.
Having hospices as charitable organisations also allows the government
to sentimentalise what ‘all these wonderful people’ do in this special way, and
allows them to avoid responsibility for ensuring that a really good general
service to help with the dying process is part of our health and social care
system. So it allows the Conservatives to tell us that the voluntary principle
is valuable, and part of the ‘big society’ that the Prime Minister likes to go
on about. Really what they mean is they love not having to pay for most of it.
Now I turn to palliative care.
Palliative care, and palliative medicine, as the medical
speciality is called, is a well-established form of healthcare practice,
building on the pioneering work of hospices. The assumptions underlying it are
that in advanced illness, expert management of symptoms, particularly but not
only pain, allows people to have the highest possible quality of life and
fulfil their life aims in the time they have left. I don’t object to that, but
I’d like to point out what it implies.
First, it creates a medical specialty around the care of
people with ‘advanced illness’, so that other doctors are expected to hand over
their patients once they are close to dying because the important thing becomes
caring for them sensitively, rather than active treatment. In this way, medicine
is avoiding the issue of balancing care as you die with treatment for your illness,
as though they were different things, whereas hey are actually two aspects of
people's lives who are living with serious illness. Some doctors can go on saying what they do is cure, because
they can leave the death bit to other doctors. It’s an example of the medical
profession dividing people up into specialities for their convenience, rather than
treating people in the round, so that they are not being realistic about what
is happening to their patients, and not listening to what their patients are
experiencing. Then there are disputes about handing over or not. But more
important, it means that patients on the other side of the divide are not
listened to with a curative mind in play. They are to be made comfortable, but
any wish of more treatment is ignored as unrealistic. Some people are not happy
that artificial nutrition and hydration (food and water) are withdrawn, but
this is presented as a technical issue: in palliative care, once a patient is
defined as having reached that stage, the policy is to withdraw feeding and
hydration tubes. It’s not that I disagree with that policy, it’s that the
division between the caring and treating is so sharply made, instead of one
medical team taking the responsibility for balancing the whole of their patients
and their family’s needs.
Second, palliative care as a healthcare specialty becomes
divided from care at the end of people’s lives. Palliative care specialists in
social and health care all tend to assume that this distinction is not
important: end-of-life care is really just a branch of palliative care. But palliative
care comes from the wrong direction. It’s about ‘advanced illness’ (that is, a
diagnosable illness that has got so bad they can identify the characteristics
of an end stage). A lot of government policy focuses on end-of-life care being
provided in the last year of life. But nobody knows when you’re going to die,
so how is care provided for people in this situation? Only if healthcare
professionals can say to themselves that within a year you are likely to be
dead. This is called the ‘surprise’ question: ‘Would you be surprised if this patient
was dead in 12 months?’ If they would not be surprised, you are regarded as in
the end-of-life category and might get some services.
But most people have not got a clear diagnosable illness,
and this stops all kinds of other services including the end of life into their
broader work. So social workers arranging for you to have some community care
at home don’t think about the reality, which is that if they’re providing this
help you are coming into that group of the population that ought to be thinking
about and planning for their deaths. Again, it encourages the separation out of
some special group as ‘end-of-life care’, instead of all the services balancing
the whole of your needs, including end-of-life, but also thinking about how you
want to carry on with your life tasks and whether the services they are
providing are helping you with that, rather than just parking you until you
come into the end-of-life category.
So for me, palliative care does not incorporate end-of-life care,
it obstructs end-of-life care achieving the kind of balance that it ought to
have in services for older people.
That’s why I have my doubts about hospices and palliative
care: their separation and sentimentalisation obstructs good end-of-life care
for everyone in the community.