Planning for living needs to include planning for dying. End-of-life care is not a specialised area of medicine, involving a few specialised social workers working in hospices and hospitals. We all die: and because people around us die, we will all be bereaved. Most people who die are in the older age groups, and anyone who is in their sixties and beyond will probably have given some thought to the death that is nearing them, and may have extremely well-worked out plans, including wills, funeral plans, and lasting powers of attorney all completed.
When people come into the social care system, it is a social work duty to make sure that planning for dying is integral to the help they get in planning for living. This may mean just checking and confirming their own planning and making sure it is well-integrated with social care services as we provide them. Or it may mean helping them make a start on the planning they have put off: we all put off planning in a well-meaning way and some people are just not planful in their lives. But we are not doing a good social work job unless we make sure that people using our services are thinking about what they want from our services, including what they want as they approach death. Because if we have not helped the users of our services know what they want, how can we provide it? And if we don’t discuss with them the options and possibilities that, with our experience and training, we can see in their situations, how can we have secured their informed consent to our intervention with them?
And end-of-life care does not need to be in the ‘too difficult’ box. There can be powerful emotions around, which slow up the routine care management and form-filling of adult social care, and which may be frightening in their intensity or touch on something in a practitioner’s life. But mostly, people are managing a complicated time in their lives and they need the practical social work that guides them through the problems and the caring social work that helps them with the strength to carry on. We can do that; we do it all the time.
Another thing: to be with someone who is dying, and to help their family and friends feel that they died well, is tremendously satisfying, and practitioners will get more good feedback from this work than anything they have encountered in their practice before.
So, the argument for social work in end-of-life care is: end-of-life is part of life, and anyone who is using social care has started on the path which brings them in touch with their death. Any adult social care service needs to recognise that. A crucial element of adult social care is advance care planning. As soon as we offer some social care, we need also to start the conversation about how this care will change and develop through the remainder of this person’s life. All end-of-life care is about balancing the reality of our increasing disablement and future death with hope for what we can achieve at this time and in the future of our lives. Reality and hope both need to be kept in perspective. The message is a misquote of the old adage: hope for the best and plan for doing something about the things that will get in the way of the best.
This is especially true for older people, but it is also true for people with disabilities and mental ill-health. Although many people in these categories are working for the best possible life, a good life depends on security in planning for everything that might happen. People with long-term progressive disabilities (and most major disabilities are progressive to some degree) need to think about how they and their families want to handle their lives and their care as they go through future stages.
The medical bias that has come from palliative care for dying people does not help. Palliative care is the major source of expertise in end-of-life care. It is also the source of the essential idea that if you manage the symptoms and care needs well, people are enabled to get on with the important things in their lives: their relationships and their own personal development. But because palliative care started from dealing with cancer, AIDS and other diagnosable illnesses, it does not cope well with the uncertainties of long-term conditions and the slowly increasing frailty which is the lot of so many older people. The NHS definition of ‘end-of-life care’ is one year from the end of life: the problem is that unless you have a clear diagnosed terminal illness, there is no evidence that anyone can tell when you have reached that phase. One answer is the ‘surprise’ question: practitioners can get nursing and medical colleagues to ask themselves this: ‘would I be surprised if this person died in the next twelve months?’ If so, they should be getting what the NHS regards as end-of-life care. Once you can get doctors and nurses to decide this, the GP should put the patient on their end-of-life care register, and additional resources and support should come from the NHS, if it is needed, although it usually won’t be until close to that year’s end. Medicine and nursing, like social work, has an ethic of optimism: ‘we are going to cure this person, we are going to help them’, but that shouldn’t stop us from thinking about the reality alongside all the progress they make, they will also need to plan for those aspects of their life that will worsen.
The social care answer to the limitations of this NHS concept of end-of-life care is to include a social care approach to end-of-life care in all their practice. This reflects the reality that when social care has been commissioned for someone, it is clear that they have problems in their daily living that are probably going to get worse. So now, right at the outset of their care career, this is the time to start planning what they want as their daily life gets more difficult. This is the best way of making sure they and their family are looking out for things that might go wrong to prevent them happening, and for thinking about what needs to be put in place to make sure they can maintain their life as they want it for as long as possible.
An essential part of maintaining that life as they want it is their own personal development. It is not a life just staring at daytime television, or playing bingo, when you want to visit museums and read history books; whatever. My experience in palliative care demonstrates the crucial important of the arts, and we need to transfer this experience to social care. People have been told at school that they are no good at art or music, and they’ve gone on believing it throughout their lives. Or they’ve come to believe they are no good at sport, because the school was only interested in the people who could play for the team. Most people can be tremendously stimulated and interested to try out their natural ability in many different arts and activities. We can’t all win Oscars or Olympic gold medals, but we can enjoy it. People can use the advances in digital photography or cheap video production to make films or photographic essays about their life, family or locality, passing on knowledge that only they have. Writing a biography or setting down their opinions can be a revelation to families who have dismissed granny as boring. The internet offers a way of communicating their achievements more widely, or they can just share it with the family or have the quiet satisfaction of knowing that they’re still doing something interesting with their lives.
By trying some new kinds of exercise (Zumba, yoga, pilates, the Alexander Technique) and finding they enjoy it, people can become fitter again, and if they are, their aches and pains will affect them less and they will stay healthier longer.
All of this means that they have more in their lives, so they’re more interesting people, they’ve got something to talk about. So visiting granny becomes, not a boring chore, but an interesting adventure. One of the important objectives of social work is cementing social relationships and creating social solidarity: this is an great way of doing it. This is not only important for people who are dying, but it’s an achievement that members of their family will take into stronger family relationships in the future. ‘Look how we all helped grandpa die well’ can become ‘Look what a strong family we are’.
Another social care answer is to build the skills and confidence in all sorts of services to respond to end-of-life life care needs. Care workers visiting older people’s homes need the training and support to identify when things are going wrong, so that something can be done. Staff in care homes need the skills and confidence to know: ‘We can talk about the difficult things with our residents. Even though we know this resident is getting very frail and ill, we can help her to live until the moment of death as well as possible, where she feels secure and her family can be with her. We know we won’t be blamed if she dies here, so we’re not going to blue-light her into accident and emergency to die lonely in a hospital corridor’. We need to do the advance planning that will enable us to commission the help that people need to die well wherever they are, and we can’t do that advance planning until we’ve had the conversations which will tell us how people want it to be. The social work skills, therefore, are essential to doing the interpersonal work that will allow us to commission services well. Commissioning is not just management, it relies on the interpersonal social work of assessment and advance care planning.
That applies not only in care homes, with and without nursing, but in all the ‘homes’ where older people may be cared for: people in prisons and on psychiatric wards get old, too. And most especially in people’s own homes, where if commissioning is really responsive to what people want and is properly interwoven with what family members can realistically contribute, we can help people die well.
Social workers and adult social care departments also need to think about the implications of end-of-life care for safeguarding responsibilities. The prevalence studies suggest that a lot of older people’s safeguarding needs arise from psychological abuse or neglect. This can be a particular issue for people coming towards the end of life, not necessarily because their carer’s abuse ramps up, but because people do not adjust to the increasing physical frailty and psychological vulnerability as they approach death. I have experienced situations where women expect (and are expected) to carry on doing all the housework and cooking, where an adult male has still been expected to take the lead in all the decisions, where a spouse has not moderated their sexual demands and where a robust pattern of family disputation has carried on around an exhausted dying person. It is also important to remember that the dying person may also be an abuser in the relationship: their previously dominating behaviour may become hectoring and demanding and the difficult behaviour of a mentally ill dying person still continues to frustrate and anger their carers and they react accordingly. We don’t need to attach blame or criticism. It is important though to prepare people to plan for increasing frailty and the transfer of responsibilities to other members of the family or friends. Help with moving a frail person around can also be a good preventive step. My experience of safeguarding in end-of-life care is that good preparation prevents a lot of problems, and careful explanation and support deals with many of the problems you can’t prevent.
This is also true for bereavement care, which has always been an essential contribution of social work to palliative care. By giving people a good experience of dying, by being open and helping them to understand what is going on and what they can contribute, people will be much more able to prepare for the death of someone that is important to them and manage the emotional and practical consequence s for their family afterwards. That means they can reorganise their relationship with that person after death. They will look back and integrate them into their lives and their family in a new way, but also look forward and develop a new way of living that incorporates their memories and their past life with the person who has died. People often need good information about how bereavement is likely to affect them. Have we commissioned that? Are we sure that it is always provided helpfully? Some people will still struggle: have we commissioned the services that will help them – a few advice sessions, some practical help with finance, some conversations with a well-trained volunteer? For the few people who will have a serious adverse reaction, have we commissioned a good quality, well-known service high in public confidence that people know they can go to and that other professions know they can refer to? Across the UK, a well-regarded, well-known, secure local bereavement service has been a low priority for commissioners. As a result, people struggle more with bereavement than they need to, and family life and security is disrupted because of it. We can do better.
And that’s the message for the social work contribution to all end-of-life care: we can do better, and our society will be all the stronger because of it.
Malcolm Payne is a Policy and Development Advisor at St Christopher’s Hospice in London and Opole University Poland. He has worked in the state and voluntary social services and in academic posts in the UK. He is author of many articles and books on Social Work and Social Care. He also has his own blog on St Christopher’s Hospice website.