Chaplains are worthwhile because….

Karen Murphy has worked in hospice chaplaincy for twenty years and has represented chaplaincy at national and international level. She is President of the Association of Hospice and Palliative Care Chaplains (AHPCC). Here, she argues the case for hospice chaplains. 

The Association of Hospice and Palliative Chaplains held our annual conference in May and considered the following statement: ‘chaplains are worth having because….’ As a group of skilled, trained and experienced chaplains, we had no problem in accounting for our role and purpose in a palliative care setting. There is a view, however, that in these secular days, the role of the chaplain is no longer valid or necessary. The daily conversations that chaplains share with patients and families soon render this argument redundant.

A patient shared with me recently that she had never had a religious faith, although she often thought it would be of value. Her long held view was ‘when you are gone, you are gone’. Now, facing her mortality having being diagnosed with terminal cancer, her thinking has shifted and for the first time, she is considering her life against an absence of faith. Our conversations are not concerned with my attempts to convert her to my way of thinking or persuade her to find a faith or belief, but to support her in this deeply challenging time. I can enable her to think through her questions and listen. At this point the value of chaplaincy becomes clearer as we offer spiritual listening, which is very different to counselling or social work listening. Chaplains have the capacity to instigate and support conversations that get to the root of someone’s spiritual distress and need. We are not afraid to ask the difficult questions about life’s meaning and purpose, and in my experience, patients seek out those with a belief in order to make sense of the spiritual disturbance and trauma experienced. A patient’s relative expressed this very clearly in a recent conversation, saying: ‘My mother, in her last weeks of life, wasn’t concerned with whether or not the chemotherapy had been successful, or what drugs she would need to be pain free. She trusted the doctors for this. What she valued was the time of the chaplain to help her think about life’s meaning and how to live and die well’.

There is a view that chaplaincy services are a waste of time and resources in a stretched and under –funded health service. The rationale for this view suggests that if patients identify spiritual need, they are likely to have religious faith, therefore will have the support of a local faith community. This view ignores the fact that patients faced with a terminal prognosis, while describing themselves as non-religious, will experience spiritual distress which is unfamiliar and frightening. Chaplains are an essential tool of our health care services which provide distinctive and relevant care for patients who are asking the big questions of life which have never been asked before. The positive impact of chaplaincy based on evidence and research is already emerging, with projects demonstrating the need for fewer GP appointments, reduced medication and a greater sense of well-being to live in the face of impending death. This body of research is growing and will offer to those cynical of chaplaincy, a quantitative and qualitative foundation for the chaplain’s continuing contribution to palliative care services.

For more information on Chaplaincy in Hospice and Palliative Care and to buy a copy of the book, follow this link

Why not follow us on Facebook @JKPReligion or on Twitter @JKPBooks for more content from our authors.  

No matter how young the child, honesty is the best way…


That is according to Nathalie Slosse, author of Big Tree is Sick, who tells the story of how the book came to be, as well as laying out her case for complete honesty as the best way to engage with children when helping them to understand serious illness.

In surveys on what values ​​we consider important, honesty is always highly rated, usually even as the most important quality. However, when it comes to honestly confiding something serious to our children, we often want to spare them the grief that the harsh truth can bring. It is a dilemma I struggled with when I was treated for breast cancer, and it’s why I want to provide a resource to others in the same situation today.

Sometimes people ask me “Did breast cancer change your way of life?” I wish I could reply that this was not the case; it’s true that prior to my diagnosis I followed my heart when it came to important life choices. But if I’m honest, I must admit that without the painful episode in 2007, I would not be doing what I do now. The battle I had with breast cancer as a mum of a two year old boy helped me discover that I can help people find happiness in difficult circumstances. In 2010 I founded the association Talismanneke to further explore that path.

But let’s start at the beginning.

Continue reading

Request a free copy of the new Art Therapy catalogue

Art therapy cat coverSign up to request your free copy of our latest brochure of new and bestselling books on Art Therapy.

This includes information on our new and bestselling titles such as ‘Mindfulness and the Arts Therapies’ by Laury Rappaport and ‘Using Art Therapy with Diverse Populations’ by Paula Howie. This range includes practical books for professionals, manuals on how to incorporate creative approaches into practice as well as guides for individuals who are themselves affected.                                                                         

To receive a free copy of the catalogue, please sign up for our mailing list and we’ll get one out to you right away. You may also request multiple copies to share with friends, family, colleagues and clients–simply note how many copies you would like (up to 20) in the ‘any additional comments’ box on the sign-up form.

We hope you will take advantage of this opportunity to get more information about our outstanding new titles such as ‘Presence and Process in Expressive Arts Work’ by Herbert Eberhart. The catalogue also features information on bestselling titles such as ‘A Guide to Research Ethics for Art Therapists & Health Practitioners’ by Camilla Farrant and ‘The Expressive Arts Activity Book: A Resource for Professionals’ by Suzanne Darley.

Click this link to see a listing of new and recent titles from Jessica Kingsley Publishers’ Art Therapy list.

To request a copy of the JKP complete catalogue of books on Art Therapy, please click here to fill out our sign-up sheet. Please be sure to click any additional areas of interest as well. You should receive a copy of the catalogue within two weeks.

What do you say to someone who is bereaved? JKP author Judy Carole Kauffmann advises

In every Bereavement and Loss workshop that I have facilitated over the years, regardless of the role of the participant, the question of universal interest seems to be  ‘what do we say when we don’t know what to say?’

The Essential Guide to Life After Bereavement cover.

The Essential Guide to Life After Bereavement.

Everyone it seems is afraid of saying the wrong thing, and the more tragic the loss the greater our fear. So why is it so hard for us to know what to say when someone has been bereaved? Is it possible to say the wrong thing?  Does it matter what we say, as long as we convey by our tone of voice and facial expression the fact that we care?

In both my personal and profession experience there are certain phrases and actions that are more helpful than others, but without any shadow of doubt the worst action of all is no action at all.

Because we don’t know what to say, we may go out of our way to avoid the person who has been bereaved by literally or figuratively crossing the road to avoid them. Thus we are in a sense punishing them for something that was out of their control. We are isolating them at a time when they most need support. Sometimes all that sustains the person going through a crisis is the knowledge that other people care. They need to be wrapped in a symbolic blanket of love and support. So, how can we best comfort those in emotional pain?

‘I don’t know what to say’ and ‘I’m so sorry to hear’ are quite helpful expressions and cover most eventualities; ‘I wish I knew what to say’ is another variation on the theme.

‘Is there is anything I can do?’ needs to be backed up with something concrete. For example ‘if there is anything I can do this is my e-mail’ (for a work environment) on a personal level you could say ‘I am not working on Monday, would you like to meet for coffee?’  Alternatively ‘I’m going to the supermarket can I do any shopping for you?’ or ‘would you like me to pick up your kids from school?’ if appropriate.

Practical offers of help are often welcome and much more helpful than an empty ‘if you need anything don’t hesitate to call me’ which often makes the speaker feel virtuous,  but leaves the recipient unfulfilled and unlikely to take up your offer believing, possibly correctly, that it is not meant.

If the bereaved person says ‘I miss him/her so much’ a reasonable response could be ‘what do you miss most about him/her?’ allowing the person the opportunity to talk about their loss rather than trying to change the subject.

Trying to jolly them along with comments such as ‘but you have two lovely children/grandchildren to take your mind off him/her’ is not helpful.  It may make you feel better because you have said something to ‘cheer them up’ but you will not be helping them at all.

The ‘why did this happen to me?’ type of unanswerable questions that  many professional and non professional carers fear,  can be answered with ‘I wish I knew the answer’ or ‘I wish I knew what to say that would help’

The point is that is not essential to have an endless supply of wise words. The person you are with needs to know that you care and that you want to be supportive. It is not necessary to have a brilliant philosophical response.

The importance lies in being there and being able and willing to really listen, giving that person your whole attention.

To truly give someone your full attention without interrupting them is a gift, and if you can listen without giving them your unsolicited advice, your experiences, or what your neighbour did in similar circumstances, it is a rare gift indeed. 

Judy Carole Kauffmann is the co-author of The Essential Guide to Life after Bereavement – Beyond Tomorrow  (Jessica Kingsley July 2013) and End of Life the Essential Guide to Caring (Hammersmith Press 2010). She facilitates workshops on Bereavement and Loss and can be contacted on 07919 072111. I f you’d like to find out more about her work, visit End-of-Life Management.

Celebrating What Does Dead Mean? at the House of Commons

JKP Commissioning Editor Caroline Walton and Marketing Executive Claudine Harris were delighted to attend an event at the House of Commons on Wednesday 6th February to celebrate the publication of What Does Dead Mean?  A Book for Young Children to Help Explain Death and Dying.

The event was hosted by the Rt Hon Keith Vaz MP and the Angus Lawson Memorial Trust (ALMT), and also celebrated the work of the ALMT and their collaboration with bereavement counsellor and co-author of What Does Dead Mean?, Jenni Thomas.

It was both a moving and uplifting evening. Speeches were given by Keith Vaz, the authors of the book Caroline Jay and Jenni Thomas, and Nick Lawson, the founder of the ALMT. Two short films were shown, the first of a young boy, bereaved of his sister, reading and talking about the book. The second of a six year old boy and his sister talking about their mother who had recently died of breast cancer. The film was shot 20 years ago, and the young boy, now grown up, was at the event.

These moving films, as well as the reading of a beautiful poem written by a bereaved mother, served to highlight the importance of a book that helps children to try to understand what ‘dead’ means, and to talk about their feelings. Jenni Thomas, a bereavement counsellor of many years’ experience, spoke of how important it is that children can ask questions about death and be given clear answers.

After the speeches and films, Keith Vaz very kindly treated us all to a wonderful tour of the Houses of Parliament, complete with tour guide patter, jokes, and greetings to politicians, Baronesses and others that we passed along the way! After a visit to the gallery of the House of Lords, where we happened to enter as John Prescott stood up to speak,  we were ushered on to the floor of the House of Commons, where we practiced our ‘hear hears’ and jeers!

The following day, Keith Vaz tabled an Early Day Motion in the House of Commons which mentioned What Does Dead Mean? and noted that it helps adults to talk to children about death and dying.

You can read the Early Day Motion here:

http://www.parliament.uk/edm/2012-13/1049

Supporting children when a parent is at the end of life – An Interview with Rachel Fearnley

Photo: JKP author Rachel FearnleyRachel Fearnley is an independent researcher and consultant, and a teaching fellow within the Department of Social and Policy Sciences (Centre for Death and Society) at the University of Bath, UK. She is a qualified social worker and has over thirty years’ experience working with children and families. Her doctoral research focused on the experiences of children whose parent is at the end of life.

In this interview she talks about her new book, Communicating with Children When a Parent is at the End of Life, which talks about how to provide sensitive and effective support for children faced with the distress and confusion of having a parent who is terminally ill.


How did you become involved in working with children whose parent is at the end of life?

I have worked with children and families for many years and have always been interested in attachment theories and relationships. When I was managing a family support service with Barnardo’s, I became particularly curious about how death in childhood affects people many years later when they become parents. I observed how often the feelings about the death had remained almost dormant until the responsibility of being a parent re-awoke feelings and emotions. I think these observations were the catalyst that really ignited my interest. The real impetus for being involved with children whose parent is at the end of life came about as I began studying dying and death. I became especially interested in their life experiences and how such a huge family crisis might impact on the younger members of the family.

Can you tell us a bit more about your research in this area?

My research ‘passion’ is learning more about the lives of children who are living with a parent who is dying. Within this I feel that it is vitally important that the children’s voice is central to the research and that their views take primacy. I feel strongly that often the focus of research is upon either the patient or their partner and that the children’s needs are secondary. I like to think that my research always has a practical application and that it will help generate healthy debate amongst professionals whilst ensuring that this community of children are placed on the dying and death agenda.

Why do you think communication with children whose parent is dying so important?

The news that a parent has a terminal illness generally presents the family with a huge crisis. Everything about family life is catapulted into a maelstrom, routines change and nothing appears to be predictable anymore. If children are not included in conversations about their parent’s illness and possible imminent death they are going to witness all the changes without having any ‘concrete’ knowledge to use as a marker. They will be aware of the changes and know that something is very different but will not be able to form a consistent narrative. As a result they are in danger of piecing together the information they have gleaned and making erroneous conclusions.

Why do you think children are often left out of conversations or not told enough about their parent’s illness?

I think there are a number of reasons why children are left out of conversations. Parents will often avoid telling their children about the illness because of the fear of upsetting them or the belief that they are too young to know what is happening. However, even very young children will know that something is different within their family. Parents and family members often think that they do not have the language to know what to say to their children, and of course in these situations the professionals working with the family have a significant role to play. Understandably, for parents, the thought of having to tell their children that they are dying is just too painful to contemplate. The parent’s role is to protect and nurture their children and the prospect of telling them that they are dying is the antithesis of this. Likewise, I think that for many parents the prospect of having to hold such conversations forces them into assessing their lives and reinforces the magnitude of what is happening.

I think it is important that the professionals working with the patient understand and respect the magnitude of the task the parents are presented with and support the facilitation of the conversations. However, I also think that we need to recognise that many parents do talk to their children about what is happening and again offer support when and where necessary.

For professionals there are different reasons for not including children in the conversations. I think that there are some brilliant practitioners who have great communication skills and who can engage children and develop those ‘difficult’ conversations. However, I also think that sadly some practitioners do not have the confidence or competence to talk to children about dying and death. I believe that sometimes this is because of their own fears about death and them holding a death denying attitude, which then impacts on them discussing the subject.

For me there is also a fundamental flaw in the training of professionals. Very few curriculums for professional practice include dying and death let alone children’s experiences of death. Therefore, practitioners are not equipped for this when they are exposed to children whose parents are dying.

What affect can this have on a child?

Not being included can have serious consequences for the child. When they are inevitably witnessing the changes within their family’s life and are not in possession of the facts they are more likely to draw their own, often erroneous, conclusions. Also knowing that something is wrong but not knowing what it is can be a very scary place for children to be. They are left feeling excluded and disconnected from the family. This can have serious repercussions later in respect to the trust they have in adults.

When children are not included they are unable to start writing a meaningful narrative about their current experience. These narratives help children to begin to make some meaning from what is happening and helps them to cognitively and emotionally begin to process the changes. However, when they are not included this can also have implications for the longer term and affect negatively how they manage following the death. Not including children in conversations about the illness may weaken their coping strategies and result in detrimental health implications during adulthood.

Not talking about what is happening is also reinforcing the notion that death is something that should not be openly discussed and that it is insidious. Perpetuating this idea for the children means that they are being identified as being different from the norm and this adds further tensions for them.

However, it is important to remember that some children will, for a number of reasons, choose not to be included. Some children will prefer to have a limited outline of the facts and this will be sufficient for them to cope with. I think it is important here to remember that each child is an individual with individual needs and desires – this needs to be respected and worked with.

How can practitioners increase their confidence in talking to children about these difficult issues?

I believe that it is important for practitioners to reflect on their practice and to really think about why it is so important to talk to children about parental terminal illness and death. One of the most effective ways for developing any skill is to practice, reflect and try again. I think talking to trusted colleagues and sharing knowledge is a great way to develop confidence as is shadowing a colleague before undertaking the task yourself.

What are the most important skills to have when communicating with children whose parent is dying?

Perhaps the most important skill is being able to listen to the children and really hear what they are saying. Observing whether their body language is congruent with what they are saying is vital, and can offer many clues to what is happening for the children. Equally it is important not to make you own conclusions about what the children know – gently exploring with them what they actually know about the situation, before telling them what you think they know is essential.

A really important skill is to have the confidence to acknowledge that the conversations that are being shared with children are not easy, and that yes you are talking about very sad things. Giving the children time to explore the conversations and to give them permission to ‘go for a walk’ round the subject, exploring it from different angles and perspectives is a great skill. Equally respecting the children and recognising that they may not want to talk to you about what is happening is important. Having the confidence to use age appropriate, but not ambiguous language is a skill that is important, as is the necessity to be honest with the children. Telling them that everything is going to be okay, when actually the prognosis is poor is harmful and very bad practice. But also feeling comfortable saying ‘I don’t know the answer to that’ is a skill that we often neglect!

What are the key messages that you would like practitioners to take away from the book?

I think a key message is that talking to children about parental terminal illness, whether this is directly with the children or supporting the parents to have the conversations, is absolutely vital and a really important piece of work. It demonstrates such great respect for the children and offers them a vital helping hand / coping mechanism to help them navigate a situation that has been entered unwillingly and without choice.

An important message is the recognition that this is not an easy subject, and it is perhaps one that we would all rather not have to contemplate. However, when we are in the privileged position of working with, supporting and having these conversations with children, we can make such a significant difference to their lives and the lives of their family.

You talk in the book about the importance of a shift in attitudes to encourage more open and honest communication with children – how do you think this can be brought about?

I think first and foremost this community of children need to be recognised, by policy makers and professionals, as being children who are likely to need some support to navigate the very distressing and confusing thing that is parental terminal illness. Children who are living with a parent who is terminally ill are potentially at risk of harm as described in the Children Act 1989. The huge changes and challenges that the family is living through, can in some cases, mean that the children’s needs are marginalised and that they become ‘invisible’ within the family. When this occurs they become at risk of being forgotten and excluded and they will then sometimes assert their presence through behaviour that is deemed unsuitable or inappropriate.

Copyright © Jessica Kingsley Publishers 2012.

Art Therapy and Postmodernism – An Interview with Dr. Helene Burt

Dr. Helene Burt is Executive Director of the Toronto Art Therapy Institute. She earned her Doctorate of Arts in Art Therapy from New York University in 1999. She has worked as an art therapist and family therapist for over 25 years in Calgary, New York City and Toronto. She is the editor of the Canadian Art Therapy Journal and the Past President of the Canadian Art Therapy Association.

Here, Dr. Burt answers some questions about her new book, Art Therapy and Postmodernism: Creative Healing Through a Prism.


How did you get into the field of art therapy, and how did the book come about?

Art therapy was a natural melding of my interests in art and human psychology. Before I’d ever heard of Art Therapy I was studying art and art history and painting my dreams. I was very interested in Carl Jung’s writings and started reading Freud. After I graduated with a BFA in Art History I found myself searching for a direction in life and Art Therapy was suggested to me. This was in 1984 and Art Therapy was a profession that was not well known in Canada at the time. When I heard about it I had and “Ahaa!” moment and I haven’t looked back since.

I have been interested in what we know as postmodernism since the 1980’s mostly through my work as an art therapist and family therapist. Feminism, systems theory and later narrative therapy all increased my interest in postmodernism. Little has been written about the field of art therapy and postmodernism and I felt that I could contribute.

What is meant by ‘postmodernism’ in the context of art therapy, and why is it important to consider research and practice from this perspective?

In a nutshell, postmodernism in the context of art therapy is the acknowledgement and integration of multiple perspectives as this pertains to art therapy clinical practice, research and training. In doing so we recognize that there is no one truth that can be apprehended and applied to our work but rather many different truths and ways of seeing. This in turn impacts how we practice and what we research and teach on many levels. We have to start asking ourselves questions like, “How is my therapeutic relationship with this client impacted by my beliefs and values?” and examining our research and teaching practices to discover what we may be unconsciously be promoting or leaving out. With this comes change.

What is timely about this book?

This book comes at a time when world events indicate our need to see from the perspective of the other or others. If we cannot do this we cannot work together to protect the Earth from further damage. Authors from different communities and cultures come together in this book to help us all stretch our ways of seeing and practicing. Art therapists are in a unique position to use our life-giving creative energies to create positive change in the world.

The book covers a vast range of client groups. Why was it important for chapters to be culturally diverse?

In keeping with the multiple perspectives stance of postmodernism, the more we can share with each other about other ways of seeing the more effective we can be in our practice, research and training.

Copyright © Jessica Kingsley Publishers 2011.

Video: Michael Mandelstam, author of ‘How We Treat the Sick: Neglect and Abuse in our Health Services’

In this video series, Michael Mandelstam talks about his new book, How We Treat the Sick, which shows beyond question that neglectful care is a systemic blight, rather than mere local blemish, within the UK’s health services.

In the book, Mandelstam analyses the causes and factors involved, reveals the widespread denial and lack of accountability on the part of those responsible – and spells out the political, moral, professional and legal implications of this failure to care for the most vulnerable of patients with humanity and compassion. Most important, he points to the main obstacles to a solution – and to how they can be removed and change be accomplished.


Part 1: The “substantial seam of bad” in the UK health service

 


Part 2: The Mid Staffordshire Inquiry

 


Part 3: Finding a Solution to Poor and Neglectful Care


Part 4: Focusing on Practice, not Politics

Copyright © Jessica Kingsley Publishers 2011.