Candle Child Bereavement Service: Children, young people and loss

A new short series about bereaved children and teenagers with examples of initiatives from Greece, Romania and the UK . . .

Today, Judy Debenham introduces us to Rachel who has just been referred to the Candle Service, part of St Christopher’s Hospice in London, UK. The story is typical of  the kind of thinking  and work that go on before the Candle team meet the children. 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.

Judy Debenham

Judy Debenham

It’s a Thursday morning and I’m looking at a new referral sent by a primary school head teacher, about an eight-year-old girl called Rachel. Her grandmother, Tracey, died five months previously. Since then, the little girl has reportedly been ‘in trouble’ almost every week, her attendance and grades have dropped and she has been caught hoarding food taken from the canteen at lunchtime.

I wonder what the relationship with grandma was, whose mother it was who died. Is there a Dad around? How was Rachel prior to the death?

I start as we always do, by calling Mum, Janine. Over the course of the day and the following week, I leave three messages and end by writing to Mum to invite her to contact me. I don’t know if she wants to go ahead, it’s starting to look difficult Eventually, and with some help from the school, I manage to arrange an initial meeting with Mum who sounds very low and rather non-committal.

The appointment time comes and goes and I call Mum; what happened? She had to fetch Rachel from school as she was excluded. She sounds very fed up and speaks in monosyllables. We arrange another time and I share my feelings of frustration in supervision. Eventually, four weeks after I pick up the referral, I meet with Janine.

During a meeting that lasts over 90 minutes, I hear the story of a family who were organised around the care of Tracey (the grandmother). She lived with them and died from COPD (Chronic Obstructive Pulmonary Disease) and was also diabetic. Nevertheless, she adored her only granddaughter, Rachel, helped her with reading and was there every mealtime. Rachel loved riding on her grandmother’s mobility scooter, spending time at her caravan and loved her dog, Lucky. Where is Lucky now I wondered? Janine tells me he died three weeks ago; the week of our missed appointment and Rachel’s exclusion.

Janine is bereft without her mother: she can’t adjust to the empty house. Danny, Rachel’s Dad, ‘walked out’ just after Tracey’s death. Janine has now started antidepressants and admits sometimes she ‘can’t be bothered’ to cook or get up.

I listen, I empathise, and I think how Janine herself needs support in ‘growing up’ at 36. I describe to her how her daughter might be feeling; angry, resentful, wanting her Mum to be a Mum, anxious and worried, wondering why everyone she loves ‘disappears’ and who will be next. And also she is missing the kindly presence of Tracey, who held them all together and who loved her so much. I give the number of the local adult bereavement service to Janine and we make a time for me to meet Rachel.

Look out for the next instalment on the EAPC Blog when Judy will tell us more about her meeting with Rachel . . .

Read more posts in this series on the EAPC Blog . . .

 

 

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Patient-centred care: How far should patients be ‘active collaboration’ partners?

Marlieke van der Eerden, MSc and PhD candidate, is involved in the European FP7 research project ‘Best and promising practices in Integrated Palliative Care in Europe’ (InSup-C).

Marilee van der Eerden

Marlieke van der Eerden

The decisive role of patients

Having worked within integrated palliative care research for some years, I have learned that patient-centred care is one of the key aims of integrated palliative care. Patient-centred care definitions focus on organising care around patients’ needs and involving patients as the ‘active collaboration’ partners of professionals in designing their treatment trajectory. This implies that patients have a decisive role in making their treatment successful and bear responsibility for this. However, in interviews with incurably ill patients and family carers in the Netherlands, which I conducted for InSup-C, I found that respondents were not always happy with the decisive roles professionals attributed to them. This often caused uncertainty with the consequence that patient-centred care was not achieved. Three examples from the data will demonstrate this.

Experiences of patients and family carers

I remember Alma, who had incurable lung cancer and had reached the point of deciding whether or not to continue life-prolonging chemotherapy. It was an extremely difficult decision. She had had negative experiences with a previous, similar therapy, but still hoped for life prolongation. Her oncologist had given her a lot of information about the benefits and burdens of this therapy and said that for more information she could consult Google. However, she didn’t like Google and she felt uncertain not knowing what to decide. She felt that her oncologist had abandoned her and let her down. She would have liked him to help her more in making her decision.

I also remember Peter. He seldom saw his general practitioner (GP) and he always needed to initiate contact himself when he had a problem. But he did not like this and would try to put off seeking contact for as long as possible. However, Peter now felt unsure whether it might be too late when he finally did seek contact with his GP. He would have preferred the GP to contact him more often.

Thirdly I remember Charles – in my view perhaps the perfect example of an active collaboration partner. He coordinated his wife’s care, was always very alert and took his wife’s blood test results and templates with him to all consultations in order to ensure the right treatment decisions. He really liked his oncologist, because he had once said: “We do it together.” However, when his oncologist asked whether he remembered the date they had started chemotherapy for his wife that really took the biscuit! He started to doubt who was actually responsible for his wife’s treatment.

Final consideration

These examples triggered me to question the decisive roles attributed to patients in patient-centred care definitions. They also prompted me to ask what patients and family carers themselves think about what their role should be in designing their treatment trajectory. This has inspired me to examine our data on this topic more in depth to find an answer to these questions. The forthcoming results will hopefully shed more light on this important topic.

Note: Names have been changed to ensure the privacy of respondents.

To find out more . . .

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Palliative care and neurology: Big steps forward

Professor David Oliver, University of Kent, UK, and EAPC board member, describes two major developments to enhance awareness of palliative care for neurological patients.

Prof. David Oliver

Prof. David Oliver

The publication of the consensus document on palliative care earlier this year 1 has led to two important developments, one of which is closer collaboration between the European Academy of Neurology (EAN) and the European Association for Palliative Care (EAPC).

In May 2016, a Spring School for Neurologists in Training across Europe, and more widely, was organised by the European Academy of Neurology (EAN). During the three-day seminar held at Staré Splavy, in the Czech Republic, a specific day on palliative care was held, with Professor Stefan Lorenzl, from Austria, and myself (from the UK) leading sessions on palliative care for neurology patients and communication in palliative and end of life care. More than 100 delegates attended, primarily from Eastern Europe and even North Africa. Delegates attended a morning lecture and an afternoon seminar, where cases were discussed in an interactive way. This was a very positive approach by the EAN and was well evaluated by both the delegates and the EAN.

At the end of May, the 2nd Congress of the EAN was held in Copenhagen. A case-based facilitated workshop on the palliative care of a person with amyotrophic lateral sclerosis (ALS, also known as motor neurone disease) involved speakers from across Europe. The inclusion of this session shows the EAN’s ongoing commitment to palliative care, with Professor Marianne de Visser, a neurologist from Amsterdam, and I, co-chairing the Scientific Panel on Palliative Care. The panel is looking at ongoing education for neurologists and palliative care professionals, as well as considering future educational and research collaborations.

Prof. Günther Deuschl, President of the EAN (right) and Prof. Philip Larkin, President of the EAPC, sign the Memorandum of Understanding between their respective associations.

Prof. Günther Deuschl, President of the EAN (right) and Prof. Philip Larkin, President of the EAPC, sign the Memorandum of Understanding between their respective associations.

EAN and EAPC sign Memorandum of Understanding

During the Copenhagen Congress, a Memorandum of Understanding was signed between the EAN and the EAPC by Professor Phil Larkin, President of the EAPC, and Professor Günther Deuschl, President of the EAN. The memorandum will encourage the collaboration between the two organisations, with opportunities for sessions at congresses, joint research and education, and ongoing working relationships. This will be continued by the formation of an EAPC Reference Group on neurology, allowing ongoing work and collaboration between the EAPC and EAN.

Speaking about the signing of the Memorandum, Professor Larkin said:

“This is an important development and shows the commitment of both groups to collaborate and move forward together, building on the EAPC Taskforce and the EAN Panel. We look forward to further collaboration and thank the EAN for this most positive move.”

Reference

  1. Oliver DJ, Borasio GD, Caraceni A, de Visser M, Grisold W, Lorenzl S, Veronese S, Voltz R. A consensus review on the development of palliative care for patients with chronic and progressive neurological disease. Eur J Neurol 2016; doi:10.1111/ene.12889.

In press: D J Oliver, GD Borasio, A Caraceni, M de Visser, W Grisold, S Lorenzl, S Veronese, R Voltz. Palliative care for progressive neurological diseases – a joint approach between the EAPC and the European Academy of Neurology. European Journal of Palliative Care vol. 23 (5) 2016.

 

 

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Integrated palliative care: Reflections on sessions at the 9th EAPC World Research Congress in Dublin

Jeroen Hasselaar (Radboud University, Nijmegen, the Netherlands) and Agnes Csikos (University of Pécs Medical School, Hungary are members of the Integrated Palliative Care InSup-C Consortium Management Team. The project has been investigating the best way to deliver care to people who have advanced cancer, heart failure or lung disease as they come towards the end of their lives.

Agnes Csikos

Agnes Csikos

Jeroen Hasselaar

Jeroen Hasselaar

The integration of palliative care is an emerging topic, which was included in the programme of the 9th World Research Congress of the European Association for Palliative Care (EAPC) in Dublin via several sessions and abstracts. We highlight three examples here.

Stein Kaasa (Norway) approached the topic from the viewpoint of increased costs and complexity of treatments. These complexities increase transfers of patients and information exchange between professional caregivers. Integrated care pathways are mentioned as a possible solution for this. Such pathways need to include all possible steps that palliative patients undergo, from hospital diagnostics to community home care. For each different stage, care plans are needed, the evaluation of which can partly take place via patient-reported outcome measures (PROMs).

EAPC Conference, UCD, Dublin. June 2016.Tit Albreht (Slovenia) focused on the strategic transfer of hospital care towards community care because patients increasingly want to be cared for at home as much as possible. For palliative care delivery at home, availability of a professional team and patient trust in home care delivery are needed. Investment in education and training of multidisciplinary teams are therefore needed, together with the availability of social care.

Jeroen Hasselaar (the Netherlands) reported some preliminary results from the InSup-C international study on integrated palliative care. More than 150 patients and 90 family carers were included from palliative care initiatives in five European countries (the UK, the Netherlands, Germany, Belgium and Hungary). Patients and family carers particularly valued the personal/patient-centred approach deployed in palliative care compared to general healthcare, although the presence of several professional caregivers can also be challenging in terms of information exchange/sharing.

What different things are we talking about? 

Integration can be defined as the act or process of uniting different things. So, in palliative care, the first question is: What different things are we talking about? From the above-mentioned examples, it appears that due to increased complexity of treatment, palliative care becomes fragmented across several care settings, such as hospital care and home care. This demands more advanced ways of information exchange/sharing and the competencies of other professional caregivers.

What brings unity? 

The second question is: What brings unity? Pathways were mentioned as a structure that binds professionals together and gives clear clinical parameters to act upon, tailored to the setting where the patient is residing. This comes with a need for investments in multidisciplinary teams and competencies. Finally, however, it seems that the unifying element for patients and carers, which positively distinguishes palliative care, is the personal approach where patients are considered as ‘whole human beings’ instead of being identified merely by their disease.

The organisational integration of palliative care starts therefore with the acknowledgement that palliative patients are approached from an integrated perspective, namely as whole human beings.

To find out more . . .

  • Integrated Palliative Care: Are we ready for change? Symposium 30 September 2016, Museum of Natural Sciences, Brussels, Belgium. Find out more and register here.
  • Read more contributions from members of InSup-C on the EAPC Blog.

 

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Merimna: Caring for children and families experiencing illness and death

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

Over 20 years Merimna has provided bereavement support to more than 50,000 children, parents, and school communities. Danai Papadatou, PhD, President of Merimna’s Board of Directors and Professor of Clinical Psychology, School of Health Sciences, Department of Nursing, National and Kapodistrian University of Athens, Greece, explains.

Prof. Danai Papagaiou

Prof. Danai Papadatou

Merimna (meaning ‘care’) is the only organisation in Greece that provides services to children who are affected by dying, death and bereavement, and to the significant adults in their lives. Founded in 1995 by experts in paediatric palliative care and bereavement support, this non-profit organisation has made a significant social contribution through the provision of these free of charge services:cc

 

  • Childhood and Family Bereavement Counselling Centres in Athens and experienced psychologists trained by Merimna assess each family’s needs and provide individual, family and/or group bereavement support for parentally bereaved children, and parents who grieve the loss of their spouse or the loss of their child. Traumatically bereaved children are offered long-term support, and families who live in remote places are supported by a Telephone Help Line.
  • Community interventions in loss, trauma or disasters – these are not limited to the crisis-phase immediately following the traumatic event (e.g. several student deaths at a school excursion) or disaster, but are integrated in the school programme for up to three years, so as to address the changing needs of traumatised children, families, schools and communities.
Drawing by a 10-year-old boy whose father committed suicide by hanging himself – at the time the boy’s mother had not informed him about this. The boy depicts a shipwreck with a drowning person shouting ‘help,’ and a rescuer responding ‘OK’. In the drawing, the boy most probably depicted himself asking for help from the psychologist. (Copyright: Merimna).

Drawing by a 10-year-old boy whose father committed suicide by hanging himself – at the time the boy’s mother had not informed him about this. The boy depicts a shipwreck with a drowning person shouting ‘help,’ and a rescuer responding ‘OK’. In the drawing, the boy most probably depicted himself asking for help from the psychologist. (Copyright: Merimna).

Greece has no official national record; however, it is estimated that, annually, more than 10,000 children and adolescents are bereaved. Over the past 20 years more than 50,000 children, parents and school communities have benefited from our services, while thousands of educators, health and mental health professionals have attended our training programs, seminars and national conferences.

Today, Merimna is faced with three major challenges:

Psychosocial effects of major economic hardship on childhood and family bereavement

Since the beginning of the crisis, we have been faced with more requests by families of traumatically bereaved children who encounter the death of a parent by suicide, homicide, heart attack, acute illness or road traffic accident, leaving the surviving parent overwhelmed with debts, unemployment, and limited support by significant others who are absorbed by their own difficulties. In addition to the loss of a parent, bereaved children experience the loss of the surviving parent who, although present, is psychologically absent and absorbed by the struggle to survive through economic hardship that compromises the family’s quality of life. A new programme for single parents seeks to enhance their resilience and parenting skills, with support being available whenever they decide to address their grief.

Support for traumatically bereaved refugee children and unaccompanied adolescents

We are challenged to revise our westernised theories on trauma, explore a much broader range of dimensions besides the symptomatology of PTSD (post-traumatic stress disorder), anxiety and depression, and include in our assessments and take into account the socio-political, cultural and historical context in which some of the children’s responses occur.

To raise public awareness of the challenges encountered by refugee children on the move, and to strongly advocate for their rights, we have launched at the Beneaki museum an exhibition of Akash’s photography, which is currently displayed in Switzerland and soon in other European countries. 

Major financial constraints due to the drastic decrease of donations

Merimna receives no funding from the government and relies entirely on donations from individuals, companies, foundations and the association ‘Friends of Merimna’ to operate its services. Staff salaries had to be reduced, services decreased, and the administration has focused on building collective resilience. We operate on the belief that the extent to which staff members are emotionally supported by their organisation affects their ability to provide quality to bereaved children families, and support their colleagues. Regular staff supervision, evaluation of services, and a fruitful communication between administration and staff enhance growth in the face of adversity.

More about Merimna – society for the care of children and families encountering illness and death
As well as the services described in this post, Merimna also offers paediatric palliative home care services to children and families living in the large area of Athens. Please visit our website

Read more posts in this series on the EAPC Blog . . .
Read last week’s post from Marinela Murg about ‘The Morning Star Camp’  run by Emanuel Hospice in Romania. Next week, Judy Debenham writes about the Candle Project at St Christopher’s Hospice in the UK.

 

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Bringing death back to life: Is it time to change our approach to health care?

Dr Joseph M Sawyer, Core medical trainee at St George’s Hospital, London, UK, explains the background to his longer article published in the July/August of the European Journal of Palliative Care.

Dr Joseph Sawyer

Dr Joseph Sawyer

The relationship between community, ill health, life and death is clearly complex but packed deep within it is the essence of what drives us to do well for one another. Surely then, as practitioners, charged with providing direction to our health service, we should have some insight into this fascinating and fundamentally important relationship? 

To understand what death means to us we need to have some appreciation of our individual existence in the context of what it means to exist as a whole. A useful analogy would be that of a wave. The wave exists as a separate entity and is a wave in its own right, yet at the same time it is born out of the depths of the ocean and from its conception to its end at the shore edge it never loses its connection with the ocean at large. It is a continual relapsing and remitting cycle of energy. This is a natural process that suggests a feeling of equilibrium and balance. A feeling that is at odds with the fear, pain and suffering that surrounds modern societies’ image of death.

Figure 1: Surf sequence by Joseph Sawyer

Figure 1: Surf sequence by Joseph Sawyer

How then do the structures we have created in health care fit into this exclusively natural paradigm? For some time, it has been recognized that health services do not deal well with death. 1,2 The extent of our anxiety towards death is noticeable in our attempts to control the events that lead up to it. From contraception through pregnancy and beyond we have developed interventions that empower us with a sense of control that can easily be mistaken for care. We understand very little about death, we have no control, we feel uncomfortable and suddenly all the emotions of fear and failure seem all too familiar.

Figure 2. Health care versus health control, the differing approaches to death and ill health

Figure 2. Health care versus health control, the differing approaches to death and ill health

This leads me to question does our health service care? Or does it merely seek to control as a proxy for something that is far more emotionally and intellectually challenging?

If we are to have a health system that cares, a system that reduces suffering and promotes equality, then we must seek to bring the concept of death back to life. Realising this has led me to write the article ‘Cure or care – diagnosing death in the modern era’ that is published in this month’s edition of the European Journal of Palliative Care.

My work has taught me that placing real value on concepts of interdependence, community, and compassion can provide us with an approach that appreciates the complexity of ill health in relation to death whilst providing a real force for change. We all want to care for our patients and feel suffocated and trapped when we are unable to do so, perhaps we can change our approach and help end the suffering for ourselves as well as our patients?

References

  1. Paton A. Letting go (personal view). BMJ. 2009; 339 (b4982).
  2. NCEPOD. Deaths in Acute Hospitals: Caring to the End?: National Confidential Enquiry into Patient Outcomes and Deaths; 2009. 115 p.

EJPC234coverRead the full article in the European Journal of Palliative Care

This post relates to a longer article,Cure or care: diagnosing death in the modern era’ by Joseph M Sawyer, 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 – subscribe online here.

 

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EAPC White paper: Understanding volunteering in hospice and palliative care

 

Anne Goossensen, Jos Somsen, Ros Scott and Leena Pelttari, members of the EAPC Task Force on Volunteering in Hospice and Palliative Care, explain the background to their longer article published in the July/August European Journal of Palliative Care.

Anne Goossesnen

Anne Goossensen

Jos Somsen

Jos Somsen

Volunteers have a long history of involvement in many hospice and palliative care services in Europe, and some organisations could not exist without them. Yet, the role of volunteers is not always well understood and recognized by professionals and organisations, resulting in tensions around whether and how volunteers may be involved. It was this that prompted the work of our Task Force on Volunteering in Hospice and Palliative Care to attempt to define and explore the role of volunteers and clarify the position, identity and value of volunteering in hospice and palliative care in Europe.

We undertook a number of activities including organisation of two European-wide symposia on volunteering, analysis of existing literature and focus group and consensus discussions at task force meetings at the EAPC World Congresses in Prague and Lleida. We developed discussion texts on the definition, typology, roles and position of volunteers. These texts were circulated to experts in Romania, Poland, Portugal, Italy, the Netherlands, Austria, Germany, Ireland and the UK and led to consensus.

Left to right: Ros Scott and Leena Pelttari, Co-Chairs of the EAPC Task Force on Volunteering in Hospice and Palliative Care

Left to right: Ros Scott and Leena Pelttari, Co-Chairs of the EAPC Task Force on Volunteering in Hospice and Palliative Care

What we learned was that volunteers in this area could be grouped into three main categories as suggested by Smeding[1]: 1) professionals such as doctors, nurses, chaplains giving their expertise on a voluntary basis; 2) people in local communities volunteering their time (both in direct patient contact and in other roles); and 3) voluntary board members and trustees. There was a consensus that volunteering has an important role in the sustainability of many organisations and has a unique role and identity of its own next to professional care and family care. Further, it was important that volunteering was considered as a relational activity. This helped to capture its value to patients, families, communities and society as a whole. In considering volunteering in care-focused roles within the Asklepian tradition as described by Randall & Downie [2] (2006), it became clear that one key importance of volunteering was in ‘being there’ and the value that is created within the volunteer’s encounter with patients and their families.

Our hope in presenting this lens through which to consider volunteering is that it will help to bring clarity to the role of volunteers, not only to patients and their families but to paid staff and to organisations as well, leading to a collective understanding of their place within hospice and palliative care. This might help to improve practice and enable evaluations of volunteering practices that help to understand the unique value of hospice palliative care volunteers.

References

  1. Ellershaw JE. Opcare9. A European collaboration to optimise research for the care of cancer patients in the last days of life. March 2008–2011. Executive report. Liverpool: Marie Curie Palliative Care Institute, 2012.
  2. Randall, F. & Downie, R.S. (2006) The Philosophy of Palliative Care. Critique and reconstruction. Oxford: Oxford University Press.

EJPC234coverRead the full article in the European Journal of Palliative Care (or download your free copy of the article from the EAPC website)

This post relates to a longer article,EAPC White paper on the role, position, identity, and value of volunteering in hospice and palliative care in Europe’, by Anne Goossensen, Jos Somsen, Ros Scott and Leena Pelttari published in the July/August 2016 edition of the European Journal of Palliative Care (EJPC). (vol. 23.4).

You can also download a FREE copy of this article from the EAPC website

If you have a web-based subscription to the EJPC 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.

Links

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