Hospice and palliative care should be part of care for older people, not separate

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 19^th 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?  

The link to the original post. 

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/3^rd 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.