Let’s Talk About Palliative Care

 

Karen Charnley is Head of Institute at the All Ireland Institute of Hospice and Palliative Care, a collaborative of hospices, health and social care organisations and universities on the island of Ireland. Here, Karen introduces an important new resource to inform the improvement of the planning and delivery of palliative care.

Karen Charnley (Copyright Fennell Photography 2014)

Karen Charnley (Copyright Fennell Photography 2014)

The starting point in palliative care is always the person with the illness and not the illness. This is reflected in the very personal experiences which have enriched the All Ireland Institute of Hospice and Palliative Care’s ‘Let’s Talk About’ report published recently.

It is my hope that the 528 people who took part in the survey, by sharing their own experiences of palliative and end-of-life care, will help to improve the lives of many others. These human stories provide a picture of what matters to people.

When we know what matters, services and support can be delivered and improved to address these issues and help people to have as good a quality of life as possible, whether they have days, months or years of living ahead.

What we learnt from the survey

What comes across particularly strongly in the report is that planning for the future is a major worry for people. Planning for the future covers many issues, including planning for the end of life.

One carer felt their mother’s wishes were respected and describes how a meeting with a doctor from the hospice homecare team changed everything for them, removing the anxiety and fear of talking about the future. On the other hand, another person describes their experience as appalling, feeling they would have to go through the stages of their illness without anyone letting them know what they may have to face.

Making planning for the future normal might help to remove the fear of the unknown. I am mindful that this is a very personal issue and individuals must decide for themselves what they want to discuss.

People feel best supported when they are listened to, when they are given space and permission to express their feelings and when information is provided to them in a timely, sensitive and appropriate manner.

Pictured with the Let’s Talk About report are (left to right): Prof. Philip Larkin, AIIHPC Chair and President of the EAPC; Mrs Eithne Frost, Voices4Care member attending AIIHPC Council of Partners; Ms Karen Charnley, Head of AIIHP

Pictured with the Let’s Talk About report are (left to right): Prof. Philip Larkin, AIIHPC Chair and President of the EAPC; Mrs Eithne Frost, Voices4Care member attending AIIHPC Council of Partners; Ms Karen Charnley, Head of AIIHP

‘Let’s Talk About’ presents a challenge to those providing care to respond in ways which best support people and their families at this important time in their lives. It challenges all of us to provide a supportive space to think about, discuss and plan for care when facing an illness which won’t be cured.

From the stories, it is very clear that people’s understanding of care is not just about caring for an illness and its physical symptoms. Good care puts the person at the centre of care and takes into account how the person’s illness or condition affects them physically, psychologically, socially and spiritually.

It is my wish that these human stories in ‘Let’s Talk About’ have a humanising effect and are a reminder that palliative care is about the person and about living well until the end of life.

Read the full ‘Let’s Talk About’ report here

More about the All Ireland Institute of Hospice and Palliative Care
All Ireland Institute of Hospice and Palliative Care (AIIHPC) is a leading organisation with national and international influence driving excellence in palliative care. AIIHPC is a collaborative of hospices, health and social care organisations and universities on the island of Ireland. AIIHPC advances education, research and practice to improve the palliative care experience of people with life-limiting conditions and their families.

 

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Candle Child Bereavement Service: Children, young people and loss – part three

Concluding our series about bereaved children and teenagers with examples of initiatives from Greece, Romania and the UK

In the final part of this story, Judy Debenham describes how the support that Rachel is receiving from the Candle team is beginning to take effect. The Candle Service is part of St Christopher’s Hospice in London, UK. Around 200 children and young people aged three to 18, who are experiencing loss through death, are referred each year from five south London boroughs.

The story so far. Rachel is an eight-year-old girl whose grandmother has died having been a major part in the lives of Rachel and her mother, Janine. Janine is depressed and Rachel’s father, Danny, has walked out. In the previous post, Judy describes the first two sessions with Rachel: a sad but very busy little girl who does so much practical work to support her mum that she does not have time to grieve properly for Grandma Tracey . . .

Judy Debenham

Judy Debenham

Over the next three and a half months, I meet with Rachel four more times. At the beginning of each session, I ask whether she would like her mum, Janine, to be in the playroom with us and she says she would.

Rachel seems happier. She again plays with the dolls and consoles them when they are hungry. The three of us talk together about what life was like when Grandma Tracey was well. I encourage Janine to fill in the gaps in Rachel’s memories and to share her own experience of Grandma Tracey as a mother. It’s abundantly clear that Janine needs this space, not just to talk but also to show her feelings to her daughter. When she gets upset, I notice an immediate stiffening in Rachel who drops what she is doing and runs to console her mum. I want Janine to show her feelings but also to reassure her daughter that she is not falling apart while she does this; that being sad needn’t be dangerous or threatening. With difficulty, Janine holds herself together and says to Rachel that she needn’t worry about the tears, they’re normal, she’s still her mum and is OK. This happens several times over the four sessions but I notice a growing confidence and emotional fluency develop in both of them. Janine seems more confident as a mother and Rachel can be a little girl.

In all of this, we continue to remember Tracey. Mother and daughter laugh together, remembering happy family holidays in the caravan and share sad moments as details of Tracey’s illness emerge and we talk about the funeral. We decorate a photo frame, make a salt jar of memories of Tracey and make a birthday card to put on her grave. Sometimes Rachel plays and Janine and I talk; sometimes I observe Rachel’s play and wonder with her about what is going on in the play.

In the penultimate session, I ask about Danny, Rachel’s dad. What has happened there? Janine tells me that he was staying at his sister’s because ‘he couldn’t cope with all the grief.’ It turns out that he also experienced a much-loved grandma dying when he was a child, and, as Janine says, ‘It hit him like a ton of bricks, he just hadn’t dealt with it at all.’ However, Danny is missing his family and Janine is confident he will move back soon.

Meanwhile at school, things are looking better too. Rachel is having some individual sessions with a mentor and her behaviour and grades have improved. Janine has attended the monthly support group and found it helpful and I tell them both about Candle’s annual Children’s Day for eight to 12-year-olds, which is coming up soon. Both agree they would like to come.

Our six sessions feel just about right; a lot has changed for both Rachel and her mum. They can communicate and show feelings better. Both feel more confident in their respective roles. They leave, still grieving Tracey but better able to bear the feelings and adjust to the changes that have ensued. We all look forward to catching up in a couple of months’ time at Children’s Day.

Read the earlier posts about Rachel’s Story, and other posts from Romania and Greece in this series on the EAPC Blog.

St Christopher’s is organizing a Moonlight Walk on 8 October 2016 to raise funds for the ‘family bereavement services’ (ie the adult bereavement service and Candle). More information here.

Posted in BEREAVEMENT, Bereavement, Children and young people, PATIENT & FAMILY CARE | Tagged | Leave a comment

End of Life Care for All e-learning (e-ELCA)

 

Professor Christina Faull, Consultant in Palliative Medicine, LOROS Hospice, Leicester UK, and APM National Clinical Lead for e-ELCA, explains how to get the most out of this recently updated end-of-life care training programme. This post relates to a longer article published in the July/August edition of the European Journal of Palliative Care. 

Professor Christina Faull

Professor Christina Faull

Waiting for a meeting? Travelling on a train? Or a spare 20 minutes before lunch? Why not open an e-ELCA e-learning session and learn something new?

Created in 2010 and completely updated in 2015, e-ELCA is an e-learning programme aimed at enhancing the training and education of all those involved in providing end-of-life care. It is managed by Health Education England in partnership with the Association for Palliative Medicine of Great Britain and Ireland (APM). The majority of the content is relevant globally but there will of course be some differences between nations in the availability of drugs and in local policies and laws.

e-ELCA has more than160 e-learning sessions written by specialists in the field of palliative care in the UK and Ireland. The sessions are grouped into subject-specific modules about advance care planning, symptom management, assessment, communication skills and bereavement. Two modules focus on learning for social care, spiritual care and there’s a module that uses case scenarios to help integrate learning. More information about the background and detail of the content can be found in our longer article published in the July/August edition of the European Journal of Palliative Care.

You can register for e-ELCA or if you are not eligible you can purchase it. Thirteen sessions are free to access. Additionally, Recognising the Last Months and Days of Life is available as a sample session. This is a very important session to help doctors and nurses address the significant issues highlighted in recent reports about the quality of end of life care.

You can see further how e-ELCA sessions can support the competencies required to meet the Priorities of Care of the Dying Person report by you or your trainees, students or colleagues completing a Training Needs Analysis.  NICE (The National Institute for Health and Care Excellence) has indicated that e-ELCA sessions are a good way of supporting implementation of the Guideline for Care of Dying Adults in the Last Days of Life.

Many specialists in palliative care are using the sessions within their teaching. For example, for a course about advance care planning (ACP) Introduction to Principles of Advance Care Planning may be used to bring course participants to a common level before attending a study day. This ACP course may also make use of e-ELCA material for discussion within a group (for example How to Negotiate Decisions Which May be Difficult to Implement) and perhaps as a way to consolidate, or to further learning (for example Developing Your Practice: Clinical Supervision and Further Reading). There are tips about how e-ELCA can motivate and engage learners and suggested learning paths or collections of sessions to support staff groups. In addition, e-ELCA sessions have been mapped to the end of life care qualification, especially useful for social care workers. Mapping to the Association for Palliative Medicine of Great Britain and Ireland Undergraduate Medical Student Curriculum is under way. Keep in touch through the e-ELCA website.

My personal favourite session is Spirituality and Philosophy of End of Life Care. It’s a session that makes me think and reflect even after more than 25 years of supporting people who are dying. The importance of the holistic approach to people in finding themselves is so beautifully articulated through a patient video. A good way to spend those 20 minutes! 

EJPC234coverRead the full article in the European Journal of Palliative Care
This post relates to a longer article, ‘End of Life Care for All e-learning (e-ELCA)’ by Christina Faull and Victoria Winlow published in the July/August 2016 edition of the European Journal of Palliative Care (EJPC) (vol. 23.4).  If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive.

You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.

Look out for another great training opportunity in early October when Dr Sean Hughes and colleagues write about the InSup-C online learning tool on the EAPC Blog.

Posted in EAPC-LINKED JOURNALS, EDUCATION & TRAINING, European Journal of Palliative Care | Tagged | Leave a comment

Making positive change in palliative care: EUPCA/EAPC launches Leadership Award

Gerrit Frerich and Heather Graham from the European Academy of Palliative Care Coordinating Office explain the importance of a new leadership award on behalf of the European Academy of Palliative Care in collaboration with the European Association for Palliative Care.

Gerrit Frerich and Heather Graham

Gerrit Frerich and Heather Graham

Palliative care is a relatively new but quickly expanding area in health care. As the population ages, the pattern of diseases that people suffer and die from is also changing. Palliative care needs change and advancement to meet the current population needs. Although palliative care has come a long way over the years, we are not there yet and many countries still lack any end-of-life care services. As Dr Amandua Jacinto said at the 5th International African Palliative Care Conference:

Palliative care must be as available as air.”

In order to achieve this goal, we need leaders. These leaders are palliative care professionals who will effect positive change, not only in their country by engaging in advancing and improving the provision of palliative care but also worldwide by networking and learning from international examples of best practice. We recognise the importance of educational programmes and their role in training and inspiring these future leaders to be the pioneers needed for the development of palliative care. Therefore, we are delighted to announce a new award, the ‘Award for Palliative Care Leadership Programmes’ to reward those programmes already doing this important work and to encourage others to follow suit.

The award has been developed by the European Academy of Palliative Care (EUPCA) in collaboration with the European Association for Palliative Care (EAPC). We are looking for evidence of leadership capacity-building programmes worldwide that are striving to develop palliative care at a time when it is needed most. These initiatives could take place in your hospice, hospital or other palliative care institution. An independent jury of internationally renowned experts from the EAPC and EUPCA will select the winner. The award winner will be announced at an award ceremony that will take place during the 15th World Congress of the European Association for Palliative Care in Madrid 2017. A representative of the winning institution will receive registration, accommodation and travel costs to attend the three-day conference and the ceremony. If you think your institution fulfils the criteria and you wish to be considered for this exciting award then we would love to receive your application.

The European Academy of Palliative Care is a joint project of Robert Bosch Stiftung Germany and the four academic centres: University Clinic of Cologne, Germany; Nicolaus Copernicus University, Poland; Hospice Casa Sperantei, Romania and King’s College London. EUPCA works in collaboration with the  EAPC.

RBS-Logo_Eupca_CMYK
For more information about the award, the requirements and to apply, please visit our website. The closing date for applications is 15 November 2016. For any questions please email us. (coordination@eupca.eu)

You can read more posts about previous EUPCA Leadership courses on the EAPC Blog.

Posted in EAPC COLLABORATIVE PROJECTS, EDUCATION & TRAINING, European Palliative Care Academy | Leave a comment

Seeing the big picture

Neil Thompson, PhD, Dlitt, is an independent writer and online tutor. He is a member of the International Work Group on Death, Dying and Bereavement, a non-profit organisation, supporting leaders in the field of death, dying and bereavement in their efforts to stimulate and enhance innovative ideas, research, and practice.

Neil Thompson

Neil Thompson

Finding ourselves in a position where we are forced to face death is, of course, a major challenge. It is one that is intensely personal, striking at the very heart of our humanity, revealing our vulnerability and just how fragile we are. Personal, intimate even, and a unique experience for each of us – nobody can doubt this.

But, while this personal focus is rooted in truth, it is not the whole truth, it is not the whole story. That’s because, while the challenges of death, grief and bereavement are indeed personal and individual, they are also profoundly social. They are shaped in large part by social processes, structures and expectations. There are major cultural differences; we are increasingly becoming aware of gender differences; and there are even class differences that can play a part in how situations are perceived, experienced and managed. And that is just the tip of the iceberg when it comes to appreciating how much of a role social factors play in shaping our loss experiences.

Given the emotional intensity involved, it is not surprising that the psychological aspects of the situation get the lion’s share of attention – and, of course, it is quite right that these issues should be considered carefully. But, if we want to get a fuller picture of what is happening when people are facing death and grief, those psychological insights need to be complemented by sociological ones. We need to be able to place people in their social context and consider how social expectations shape grief reactions. For example, much has now been written about ‘disenfranchised grief’ – grief that is not socially accepted or supported because it is in some way devalued (as in the ageist stereotype that older people ‘get used to grief’).

To reinforce just how important the social context issues are, a conference on Social Aspects of Death, Dying and Bereavement is being held in Glasgow, UK, on 5 November 2016. With well-known speakers from the USA and Canada, as well as the UK, it promises to be a very worthwhile event – more details are available here.

Links and resources

  • Connect with Dr Neil Thompson online at neilthompson.info
  • Grief and its Challenges by Neil Thompson, Palgrave Macmillan 2012.
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Palliative care for all: Meeting the needs of lesbian, gay, bisexual and/or trans* people

Dr Katherine Bristowe, Dr Steve Marshall and Dr Richard Harding explain the background to their longer article selected as Editor’s Choice in the September edition of Palliative Medicine.

Katherine and Richard are researchers at King’s College London, Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation; Steve is a social worker at King’s College Hospital NHS Foundation Trust, London, UK.

bristowe-katherine

Katherine Bristowe

Steve Marshall

Steve Marshall

Richard Harding

Richard Harding

 

 

 

 

 

 

At the Cicely Saunders Institute, one of our four main streams of research is ‘Living and Dying in Society’. Research in this stream focuses on understanding how the needs and experiences of individuals from different communities may vary. This, in turn, can help us to adapt service delivery to meet their needs and reduce social exclusion.

Image by ©iStock.com/nito100

Image by ©iStock.com/nito100

Over recent years, there has been a raft of legislative change to support the rights of lesbian, gay, bisexual and/or trans* (LGBT) people. At the Cicely Saunders Institute, we commenced our research on the palliative and end-of-life care needs of the LGBT communities in 2012 when we completed a systematic review. This identified unmet palliative care needs within the LGBT communities and evidence of negative experiences. Even since then there have been changes in the law, most notably the legalisation of same-sex marriage in England, Scotland and Wales in 2014, and in the Republic of Ireland in 2015.

However, we also recognise that good palliative care identifies the unit of care as the patient and those close to them (including biological and chosen family). This care also extends beyond the care of the patient into bereavement. We therefore chose to undertake a second systematic review to understand the bereavement experiences of LGBT people whose partners have died.

One of the most striking findings from our systematic reviews, and our primary research (the ACCESSCare study (Advanced Cancer Care Equality Strategy for gender and Sexual minorities), forthcoming), is how common negative experiences are for LGBT people accessing health care, including in palliative care. Despite the changes in the law, society still needs to catch up. We know that people who are bereaved of their primary relationship (spouse/partner) experience physical and psychological impacts of their bereavement. However, for bereaved LGBT people, this can be heightened by the added layer of stress relating to how their relationship is acknowledged and responded to by healthcare professionals.

The 23 studies we identified revealed experiences of: lack of recognition of the depth of the relationship during care; overt exclusion of the partner around the time of death; and a lack of acknowledgement of their grief. We did some further analysis of the results from those studies and devised a new model (see below) to explain these experiences.

The acceptance/disclosure model of LGBT bereavement experiences

figure-3We found that the degree to which an individual feels able to disclose their relationship, and the extent to which that relationship is recognised and acknowledged by those delivering care to them, will shape the bereavement experience for that individual. For example, those who do not feel able to share the nature of their relationship with their healthcare team, and who are not identified as being the partner, may not receive the vital care and support they need in bereavement.

As a speciality, we need to find ways to reach those who may not feel able to share the depth of their relationship with the healthcare team. Whether through using less biologically focused tools to capture relationships, or finding ways to ask questions that don’t make assumptions about the person in front of you, we need to do this better.

We need to deliver palliative care for all and reduce social exclusion. We need to catch up.

Read more posts about improving end of life experiences and care needs for LGBT and/or trans* people on the EAPC Blog.

8-coverRead the full article in Palliative Medicine
This blog post relates to the longer article, ‘The bereavement experiences of lesbian, gay, bisexual and/or trans* (LGBT) people who have lost a partner: a systematic review, thematic synthesis and modelling of the literature’, Palliative Medicine 2016, Vol. 30(8) 730–744. First published on 4 March 2016 doi:10.1177/0269216316634601.

Download your free copy of this month’s Editor’s Choice article from the EAPC website.

How to download previously published ‘Editor’s choice’ articles
EAPC members and registered users of the EAPC website can download all ‘Editor’s choice’ papers free of charge from the EAPC website but you will need to register or login first. Please follow the instructions in the top right-hand corner of the EAPC home page and scroll down to the article. Click here to view other EAPC-originated papers.

 

Posted in EAPC-LINKED JOURNALS, Minority Communities, Palliative Medicine: Editor's Choice, RESEARCH | Tagged | Leave a comment

Candle Child Bereavement Service: Children, young people and loss – part two

Continuing our short series about bereaved children and teenagers with examples of initiatives from Greece, Romania and the UK

Today, we present the second part of a story about Rachel who is referred to the Candle Service, part of St Christopher’s Hospice in London, UK. Around 200 children and young people aged three to 18, who are experiencing loss through death, are referred each year from five south London boroughs.

The story so far. In last week’s post, Judy Debenham explained the background to the referral: Rachel is an eight-year-old girl whose grandmother has died having been a major part in the lives of Rachel and her mother, Janine. Janine is depressed and Rachel’s father, Danny, has walked out. Today, Judy Debenham meets Rachel for the first time . . .

Judy Debenham

Judy Debenham

Despite our scheduled appointment, it takes Janine several attempts to bring in her daughter. Always apologetic, she forgets, is ill herself, has other appointments. I know it’s hard for her to bring herself, literally, to a place where she acknowledges her own mother’s death and so I chase up the referral for her own counselling.

When I finally meet Rachel, I am struck by her busyness and a sense of premature adulthood. She is a thin little girl with sharp eyes that don’t miss a thing. She ignores my suggestion to talk about her grandma and immediately starts tidying up the toys in the playroom. She makes me tea, then feeds the dolls and puts them to bed, telling them they must behave. What are the dolls feeling? What would happen if they were naughty? ’They’re not allowed to be,’ she says firmly. I notice how adult she sounds talking to them. Would they like a cuddle perhaps? She denies they would. Do they have a mummy or daddy? A grandma? She shakes her head.

In the next session, I ask her again about her grandma. She doesn’t want to talk but draws an angry picture. I reflect the anger back to her and say how she must be missing her grandma and how angry she might be for not being here, for dying. She scribbles harder and breaks a pencil. I say, ‘There’s so much more to be done now Grandma isn’t here, and someone has to do these things.’ She agrees. I notice she is dabbing frequently at her eyes. I ask her what she has to do at home and she tells me; getting her own breakfast; getting her clothes ready, washing up, tidying up, waking up Mum.

If she had a magic wish to change one thing, what would that be, I wonder? She scrunches up the paper, says, through gritted teeth; ‘Have my Grandma and my Dad back.’ I look at her, chin wobbling, valiantly trying to hide the tears. I think: this little girl hasn’t got space to grieve her grandma whilst she is doing so much to keep the family going.

I decide to have a meeting with Janine and spend a long time explaining how things seem from Rachel’s point of view. She is tearful and it’s an exhausting session for both of us but she recognises she has to start being more involved. I suggest she comes to the monthly bereavement group we run and she agrees. I check it’s ok to contact school and later that day I speak with the head teacher. Amazingly, the Children’s Centre nearby are starting a Parenting and Healthy Eating group and we both feel this might help support Janine. This may clear some space for Rachel finally to focus on her grandma.

Follow the EAPC Blog next week when Judy will conclude the story of Rachel. If you missed the first instalment please click here.

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