You have probably heard about the natural birth movement… but what about the natural death movement?
We will all – without exception – face death one day, but despite this, people – in ‘Western’ societies, at least – have tended to avoid the subject of death at all costs. You could say that it is the last taboo. Now, however, there seems to be a shift in attitudes, and there are more and more discussions around death and dying.
This can only be a good thing: the more people talk about death, the more likely they are to share their wishes for what they want to happen at the end of their lives or if they get so ill they are no longer able to convey these wishes. Most people, for example, express the desire to die at home, surrounded by their loved ones, but as life (and death) become more medicalised, the reality is that most people end up dying in hospitals, or at best, hospices.
In the United Kingdom, one of the organisations that has helped raised awareness around these issues is SDIA member Living Well, Dying Well. Its main activity is to provide training for End-of-Life Doulas. You may have heard of birth doulas – trained professionals who are there to support a new mother and her family from the preparation for birth through to the birth itself and beyond. But what is an end-of life doula?
An end-of-life or death doula is a trained professional who supports those who are dying and their families in non-medical ways as they make the transition from this life to the next. Their role can vary depending on what the dying person or their family wants from them, ranging from companionship to practical support such as facilitating access to available resources.
To find out more, we interviewed Hermione Elliott, founder of Living Well, Dying Well (LWDW) and here is what she told us:
What made you begin the project?
Partly my background, which is in nursing, midwifery, complementary therapies, palliative care, training and personal development … And living through three deaths in my family, each of which was a gift, although all very different.
The first was my Dad, 84 years old, who began to feel unwell in the daytime and was on his way to bed, which was something he never did, ever. He didn’t make it to bed but collapsed in the bathroom. My Mum, understandably, panicked and called an ambulance because he had fallen and grazed his head. When the ambulance service came, they set about resuscitating him with CPR. I was horrified and deeply shocked that this could be considered a routine way to approach this situation. I prayed all the way to Wales in my car, “Let him be!” because I knew they would be trying to bring him back. Fortunately, he wouldn’t let that happen; he fought them off and he died. I was very proud of him: he would have been an appalling patient and I would have been really furious if they had left him handicapped in some way, which is often what happens.
Then there was my mum’s death. After Dad died she lived in Wisma Mulia (residential home for older adults) and loved it there. She had a hip operation after a fall at 90, and recovered fine, but was very frail when she returned to Wisma. It was becoming a huge struggle to rehabilitate, and then her heart medication/blood pressure went up the creek.
One weekend I stayed with her and she said to me, “Hermione, I’d like to pass on now, is that alright?” And I said, “yes, of course that’s alright!” And she asked me, “Do you think the doctor will help me?” because she thought the doctor could put her to sleep. And I said, “He won’t do that, but he will support you”.
The doctor asked her in all sorts of ways: “If we take you to hospital and get your blood stabilised, would you change your mind about this, Grace?” And she insisted: “No, no, I want to pass on.” And then we had a little conference with the doctor and keyworker and we all agreed that this was fine. So she was just given a little patch for pain relief and a catheter so she didn’t have to go to the toilet, and she basically turned her face to the wall and died 48 hours later. She literally left.
It was extraordinary – we were able to talk and complete everything. My Dad was coming and going and she was very reassured by him turning up, she felt he was coming to take her home, as it were. It’s such a gift.
And then my aunt’s death a few years later was completely different: she had the whole medical nightmare, it was appalling. She should have died around Easter time, but she was in and out of hospital, with attempted operations, failed operations, a hospital-acquired infection, she nearly died and was resuscitated … Eventually they got the message and transferred her to a cottage hospital and allowed her to die.
The idea of end-of-life doulas came to me a couple of years after that. I knew that we needed to be able to support people to die naturally and in their own time, without any of this intervention, and we needed to recognise that if people want to die at home, there was need for another kind of assistance.
Medical professionals – nurses, doctors, care workers – are going in for half an hour or an hour at a time, and that’s great, but the rest of the time, the family is on its own. What is needed is someone to walk alongside the family or the individual to give them confidence to stay with the process, because you never know how long it’s going to go on.
The project has been in existence for nine years now. How have things progressed?
LWDW is now quite well known in certain circles. We are the ‘go-to’ organisation when people are looking at death and dying and we get a lot of approaches from media and other organisations wanting to link with us and wanting our involvement in different things.
Ours is the only centre that is doing Doula training – we were the first organisation to do Doula for the Dying training. I developed it, although it was ‘landing’ in different places at the same time, for example there are a couple of programmes in USA and one in Australia that do similar but different trainings.
The need for the doula role has become clearer as death has become more and more complicated. There is a lot of medical intervention and a lot of delay of death and procedures where people are not consulted. An awareness has been growing for the last five or six years or so that we need to take ownership of death again, and take responsibility, to forge how we would like it to be. And I think that’s coming about because people are increasingly unhappy about what they’re seeing happening in hospitals. And death in hospitals is on the rise, when it actually needs to be decreasing because that’s what people want.
There’s a big movement that we call ‘advanced planning’ that we are passionate about now, because we know that everyone needs to state their wishes – what they want and what they don’t want and who is going to speak for them. We have to make it legal, because if we don’t state it and have it written down, there is nothing that can be done. None of us knows when we are going to get knocked over by a bus or become incapacitated and not able to speak for ourselves. It’s very powerful stuff and I believe passionately we have to take responsibility.
Organisations like ours are really addressing the issue at a very grassroots level. There are lots of people working at policy level and on government strategy and it’s like a tanker that needs to turn around. Even the hospice movement believes that they are the experts on death and that they have ‘ownership’ of death in some way; so I think hospices need to have a bit of a rethink as well.
Of course, hospice care and support is fantastic and palliative care symptom control is very sophisticated, but it’s a medical model, and when you work in a hospital environment, you are very engaged in doing. There’s a lot of nursing care and a lot of practical stuff that needs to happen, so there is no time to be with people at all.
Our local hospice came to us with a plan for having ‘companions’ for people who may not have any family and who are dying in hospice. And so they took quite a few of our doulas to do that and gave them another training to make sure that their standards were met. Their role was to hold vigils or just be present for people who don’t have anybody. So we can see there is a recognition that hospices are not attending well to that companionship role.
Also, there is such an interesting conception about what spirituality means, so in a hospice and a hospital, spiritual care means having a service or getting in a minister or priest – or someone who has a particular religion – to come along and offer comfort to someone; but if people do not have a religious belief does this mean they cannot have spiritual care? For us, spiritual care is very broad, it’s about what gives that person meaning and how they see their place in the world. It’s about deeply human concerns that could easily be missed – a very different thing to how it is generally perceived.
When does a family know when they should call in the services of a doula?
Often it happens too late. If there is a doula locally, we can usually move someone in quite quickly, but sometimes people only realise they need somebody when it’s a crisis and it’s very close to the end. We can still be of support in that situation, but we much prefer it if we can be involved earlier – months before. And some people even like to have a doula along so that they can establish a relationship and get guidance about what they might need to do to prepare, all that kind of thing. We’ve worked with some people even a year ahead of their death. This can involve occasional visits or talks on the phone or whatever it may be, but it’s not as intense as it might be towards the end.
If we are working with someone at home, it’s usually the spouse or daughter or another close relative, who tends to end up as the ‘manager’ of everything that is happening surrounding the death, for example answering the phone to friends and family who want to know what is happening, doing household and administrative tasks etc., and all this is exhausting and takes away from time actually spent with the person who is dying.
This is when a doula can step in, if that’s what’s needed or wanted, and fill some of those gaps. They can be a facilitator or manager or even just put the washing on, or take their place by the side of the dying person’s bed so that the carer can have an hour or a day off.
The doula’s time with the family can go on till the funeral and beyond. When someone is dying, their house can be full of people and equipment, but as soon as the person dies, it all goes, and for some people, that’s quite a shock. There has been a whole load of activity, and then suddenly it’s completely empty, and there’s nothing. The doulas are able to continue on for a while, not ad infinitum, but can be gradually weaned away.
How many doulas have you trained?
At the moment, we have 150 either trained or in training with us. We realised very quickly that as a small organisation, we don’t have the resources to employ people or run an agency; so for now, we act as a referral introduction service. For example, a family will get in touch with LWDW and we will connect them with a doula. Doulas are self-employed and manage their own practice. Most people who are working have another career running alongside because it can be very demanding to work in this way, and to do it full-time would be too much.
How much demand is there?
Demand for doulas is increasing, especially after we are included in media coverage. For example, recently there was a BBC Radio 4 series presented by broadcaster Joan Bakewell: ‘We Need To Talk About Death’. It was a great programme with very important, useful, realistic and down-to-earth contributors. We were included in one of the programmes and after it was broadcast, we had a spike of interest.
However, we don’t actively promote the doula service because part of our model is that people work within their own community. So we really ask doulas to go back to their own location, to talk about what they do, to set up events, for example a death café, and to really make themselves known in their own community, and to build their network of contacts to generate their own work.
There are doulas all over the UK and abroad – several people have come from the States, Japan and Australia for training. There is some training in the States, but it is an online programme, that doesn’t equip people in the way we think they need to be equipped. Our course is very interactive and there is a strong personal development element in what we are doing and we think the group environment is the best one for that.
Do you think that what you are doing is influencing policy in any way?
It’s hard to know. In 2008 when we were just beginning, there was a Department of Health strategy report which was highlighting all sorts of issues and deficits in how end of life care was happening. We were ticking a lot of those boxes but we were still very young and didn’t have any clout at all. So there’s been a recognition of a need for this for a long time.
Our patron is a man called Allan Kellehear who is a sociologist and a real pioneer of something called ‘compassionate communities’. He believes that death is the responsibility of everyone and he also believes that there are a lot of resources in every community – he calls it ‘social capital’: most individuals have some kind of network around them and very few live in complete isolation. He therefore believes we should be galvanising that network of support and if we are going to change the whole ethos around death and dying, we need to start to engage people in that way.
A couple of fabulous reports came out of Australia where they have done similar projects in which mentors were using the social network of the people who were caring for a dying person at home. It was incredibly successful because mostly people want to help and want to contribute, don’t know what the hell to do, don’t want to intrude – so how can we make that happen in a productive way? We’re very much working within that model. We’re not going in to be another layer of service, to do stuff. We call ours a ‘relationship model’ rather than a service-delivery model. And so when we form our relationships, we’re facilitating and perhaps expanding what’s there. We’re informing people about the resources and things that they can do or use, as well as using our skills to respond to what’s happening in that situation.
This model has many facets; it’s fantastic for the person who is dying and for the carers, but it’s also incidentally a fantastic education process that is going on, because people are being exposed to death and dying and to what happens, in a very safe way, within their own environment.
For more information on Living Well, Dying Well, please visit their website http://www.lwdwtraining.uk/