Food, Toys and Love: The Voices of Seriously Ill Children and Their Siblings.   

Posted on June 6, 2023 by pallcare

There are just nine days to go to #EAPC2023! The 18th World Congress of the European Association for Palliative Care (EAPC) is in Rotterdam on 15th to 17th June 2023.  Today, we are pleased to welcome Professor Barbara Sourkes to give us an exclusive preview into her plenary lecture and to tell us more about the insight and wisdom of children* facing serious illness – as well as their healthy siblings – and how their voices need to be heard.

Living with Uncertainty: “I don’t know which side of the rainbow I am on” (7 year old child). Sourkes, B.  Armfuls of Time: The Psychological Experience of the Child with a Life-Threatening Illness © University of Pittsburgh Press. 1995.

‘Food, toys and love are what we need to live!‘ (6-year-old patient)

‘Of all the things I ever could have chosen, having my brother get sick was not one of them‘ (10-year-old sibling).

Over the course of decades of psychotherapeutic work with children and adolescents confronting serious illness, I have often been asked: “How do you do it? It must be so depressing.” In fact, depressing is one of the few things it isn’t, for if it were, I could not continue. The words that do come to mind for me include rich, fulfilling, sad, frustrating, poignant, and always profoundly moving. The children’s voices – filled with emotion and wisdom – bring their vitality to all of us who care for them. As pediatric palliative care develops, the unique contributions of child psychology, psychiatry, and other mental health professions contribute to a truly interdisciplinary field.  In furthering our understanding of children’s psychological responses to serious illness, we illuminate the touchstones that are the essence of pediatric palliative care.  

In many ways, patients and their healthy siblings live the illness in mirror image: while the patient endures the physicality of the illness in all its relentless presence, the siblings are witness to its ravages. Although the siblings live the experience with the same intensity as the patient and parents, historically, they have stood outside the spotlight of attention and care.  Sibling relationships are a crucial axis within the family system and the children’s mutual caring and devotion can be powerful for both. The siblings and the children with serious illness both must cope with great uncertainty, confronted with the threat, if not the actuality, of premature separation, loss, and death. Their words and images provide a portrait of the experience of living with serious illness and help us to learn from them and hence improve care for themselves and also for future patients and families. Based on decades of clinical experience and in-depth psychotherapy with these children, psychological themes include:

  • the impact of the illness
  • the children’s awareness of their condition (or their sibling’s)
  • involvement in decision-making
  • the process of anticipatory grief.

The degree of openness and candour of children’s expression is a function of individual and family psychology, level of cognitive and emotional development and the nature of the illness itself.  Cultural background importantly impacts the voice of the child in decision-making. One caveat is the fact that many children whom we care for are severely neurologically impaired, nonverbal, with extremely limited capacity for interaction or awareness. The ‘voices’ of the children who are able to express themselves verbally or portray their feelings through art give us clues as to the experience of those who are unable to express themselves in a way that we understand. For these children, parents and siblings are truly the experts at ‘reading’ their distress / comfort and their astute observations form the basis for their shared decision-making.

What emerges overall through words and images is the recognition that across all life stages, from early childhood through to adulthood, the challenges of living with serious illness are universal. Although children may express themselves differently from adults, their awareness and concerns emerge with clarity and wisdom.

* this blog refers to children throughout, meaning children and young people.

Join Professor Barbara Sourkes at #EAPC2023. On Saturday,  17th June 2023 Barbara will give the Paediatric Palliative Care Plenary ‘Food, Toys and Love: The Voices of Seriously Ill Children and Their Siblings’ at the EAPC 18th World Congress. Find out more about the Congress here.

Links and resources

  • Read more about the upcoming #EAPC2023 in the EAPC blog here.
  • Sourkes B. Children’s Experience of Symptoms: Narratives through Words and Images. Children 2018 (Special issue: Pediatric Palliative Care)
  • Sourkes B.  Children’s Artwork: Its Value in Psychotherapy in Pediatric Palliative Care, (2018) in Buxton D and Jacobowski N. Child and Adolescent Psychiatric Clinics of North America, Special Issue: Dealing with Death and Dying.
  • Aldridge J and Sourkes B. (2021) The Psychological Impact of Life-Limiting Conditions on the Child. In Goldman A, Haines R Rappaport A (eds) Oxford Textbook of Pediatric Palliative Care: 3d edition. London: Oxford University Press.
  • Muriel, Rosenberg and Sourkes. Children’s Voices: The Experience of Patients and their Siblings. In Wolfe J, Hinds P. and Sourkes B. (eds) (2022). Interdisciplinary Pediatric Palliative Care: 2nd edition. New York: Oxford University Press

About the author

Professor Barbara Sourkes PhD is the Kriewall – Haehl Director of the Palliative Care Program at the Lucile Packard Children’s Hospital Stanford and Professor of Pediatrics at the Stanford University School of Medicine, United States of America.

Posted in 18th World Congress, CHILDREN'S PALLIATIVE CARE, EAPC ACTIVITIES, EAPC World Congresses, PATIENT & FAMILY CARE, RESEARCH | Leave a comment

The last chance to get things right: Inequity, social deprivation, and hospice care.

Posted on May 30, 2023 by pallcare

A recent study looked at the provision of palliative care in North West England in the context of social deprivation. Their research was at times surprising, sometimes discomforting, but also hopeful. For April’s Palliative Medicine Editor’s Choice, Maddy French tells us more.

Photo credit: Gerd Altmann, Pixabay.

The way that people die exposes the inequalities in the way that people live. I came to this realisation initially as a journalist writing about access to opioids in eastern Africa and then later as a public health student when looking at experiences of death and dying among prisoners. Inequalities impact people from birth to death but there is something particularly abhorrent about the unjust and unfair treatment of people in the last phase and moments of their life. It is the last opportunity to get things right and, for many, the last time they are failed by the society and systems that are meant to help them. This frustration led me to apply for a PhD to study access to hospice care in the context of social deprivation in the UK, the findings of which have now been published by Palliative Medicine.

Between 2017 and 2021, I worked with three hospices to analyse routinely collected data about the people referred to their services. I followed this up by interviewing healthcare professionals in primary care, hospital settings, and in community and inpatient hospice care, to explore their experiences of providing palliative care in the context of social deprivation. What the study findings revealed was at times surprising, confusing, and discomforting but also hopeful, with implications for understanding and addressing inequities in access to specialist palliative care.

One of the surprising, and potentially hopeful, findings was that there wasn’t strong evidence of a difference in referrals between areas of high and low deprivation. A cautionary warning though: this does not imply these hospices’ referrals were equitable. To assess equity, we need good data on population level need for palliative care. However, palliative care need can be difficult to identify in population data. Data on palliative care need is unlikely to be recorded in detail in routine clinical data and, even if it is recorded, is hard to access. Some evidence suggests that palliative care needs may be greater for people living in the most deprived areas. Therefore, we might expect to see greater hospice referrals in the most deprived areas, in order for them to be considered equitable referrals.

When taking a closer look at the routine data and speaking to study participants, further complexities and nuances became apparent. In two of the geographic areas I studied, hospitals appeared to generate more hospice referrals of people living in the most deprived areas rather than community services. Palliative care initiatives to increase referrals from deprived areas in the UK may benefit, therefore, from thinking about the joint role of community and hospital settings. However, we need to understand much more about which models of working between community palliative care and hospital services bring the most benefit to people dying in the context of deprivation.

Given the increasing and welcome focus on equity in palliative care, it may be assumed that everyone understands and agrees about what equity should look like in practice. This study found that this is not always the case among palliative care professionals. Is equity about treating everyone the same or treating people in relation to their needs? Are issues related to social deprivation appropriate reasons for hospice referral? The answers to these questions were not always clear, indicating a need for much more discussion and reflection about what facilitating equitable hospice care looks like.

Finally, like several other studies before it, this study highlighted a tension between a desire to focus on individual choices at the end of life and the way that social inequities, which are beyond an individual’s control, underpin how much choice people have over end of life circumstances. Palliative care professionals can struggle to navigate this, and its implications for their own roles and responsibilities towards patients. Any initiative to improve the equity of palliative care needs to acknowledge these moral challenges and support professionals to respond appropriately.  

READ THE FULL ARTICLE IN ‘PALLIATIVE MEDICINE’!

‘Facilitating equitable access to hospice care in socially deprived areas: a mixed methods multiple case study’ Maddy French,Thomas Keegan and Nancy Preston. First published: Palliative Medicine 2023, Vol. 37(4) 508–519. 

Links and resources

  • Read Palliative Medicine Editor’s Choice posts on the EAPC blog.
  • Follow Palliative Medicine on Twitter: @palliativemedj
  • The EAPC’s 18th World Congress is on the topic of Equity and Diversity.  Register now.

About the author

Dr Maddy French is a Lecturer in Palliative Care at the International Observatory on End of Life Care, Lancaster University. She is a mixed methods researcher with an interest in use of routine data in palliative care research. Her research is largely about health service use and access at the end of life, including exploring inequities in access and experiences of end-of-life care. She is currently involved in research looking at paramedic responses to patients with palliative care needs, identifying palliative care need in primary care settings, and exploring professional attitudes towards social inequities in palliative care practice. Twitter: @mddyfrnch

Posted in 18th World Congress, EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice | Leave a comment

Building leadership in Africa to promote equity in palliative care.

Posted on May 23, 2023 by pallcare

The 18th World Congress of the European Association for Palliative Care (EAPC) is nearly here! Today, we are pleased to welcome Dr Zipporah Ali to give us an exclusive preview into her EAPC Award plenary lecture. The burden of disease due to injuries and noncommunicable diseases has increased in Africa by 28% in the last three decades and Dr Ali explains why urgent investment in palliative care is essential.  

Photo credit: Albrecht Fietz, Pixabay

I remember a 23-year-old patient with osteogenic sarcoma who challenged me in many ways while under the hospice care. Had I met John (not his real name) earlier in my career life, before I started working in a hospice, I would have classified him as ‘that difficult patient’. John had undergone an amputation and found it very difficult to accept this (naturally, who would aged 23?). He had not been told his diagnosis or prognosis. He had big dreams to become a successful businessman. John’s journey during his illness was not easy; he had difficult problems (rather than being a difficult patient) and needed extensive support from my colleagues and me. 

Why am I sharing John’s story? John is just one of the many patients who face many challenges in their journey with a life threatening illness. Africa faces a double burden of infections and chronic diseases. The burden of disease due to injuries and noncommunicable diseases (which are conditions not caused by acute infection), measured by the proportion of total disability-adjusted life-years (DALYs) has increased from 37.8% in 1990 to 66.0% in 2019 in the African region (1). People living in most countries in Africa are experiencing an increase in numbers of years spent in poor health, even though both life expectancy at birth and health life expectancy has improved in the same period.

Clearly, the need for health services that focus on quality of life is undeniably huge. Palliative care is one of those very key services that Africa must invest in. Most patients with malignancies are either diagnosed later or are not able to access appropriate lifesaving or life prolonging treatments, and so most will live and die in pain and suffering.

Undeniably, there has been some significant improvement in palliative care provision in Africa over the last 20 years. Some countries have integrated palliative care in their health care systems, have national policies, strategies or guidelines, or have prioritised palliative care. However, there remains a huge gap in palliative care services in most African countries. A few countries have a few hospices, but these cannot meet the demand. African health systems urgently need to invest in the education of health care workers, the education of the public and of policy makers, research in palliative care, ensure the availability of services including access to opioids for pain management, and human resources to make palliative care accessible and available for all that need it. Countries implementing Universal Health Coverage (UHC) should ensure that palliative care, including end of life care, is included in their UHC packages. Currently, most UHC packages do not include palliative care outpatient services or home care. Most palliative care patients are in their homes, therefore, care should be extended right into the patient’s home and this care should be covered by UHC package.

Nurses in Africa are the main providers of palliative care, yet they are underpaid and they are not fully appreciated by our systems. They need to be well compensated, recognised as specialists providing this important service and given opportunities for career development. We must invest in our nurses and others who have the passion to care for those with a life-threatening illness.

We need to empower and invest in effective leaders in palliative care who can provide the direction and leadership that will strengthen palliative care services in their countries. A country with a successful integrated palliative care service is a country that truly cares about its people.

Join Dr. Zipporah Ali at #EAPC2023. On Friday, June 16, Zipporah will give the EAPC Award plenary lecture ‘Building Leadership in Africa to Promote Equity in Palliative Care’.

Find out more about the EAPC’s 18th World Congress here.

Reference

1 World Health Organization Global health estimates: Leading causes of DALYs.

Links and resources

About the author

Dr Zipporah Ali has recently retired from the position of Executive Director of Kenya Hospices and Palliative Care Association (KEHPCA), a position she held for 15 years. She is the current chair of the NCD Alliance Kenya and the Vice President of AORTIC East Africa. She serves on several national and international boards. Dr. Ali has been and continues to be involved in advocacy and creating awareness on pain relief and palliative care in Kenya for children and adults as well as Universal Health Coverage. Twitter: @zippyali.

Posted in 18th World Congress, ADVOCACY & POLICY, EAPC World Congresses, EDUCATION & TRAINING, NATIONAL & INTERNATIONAL REPORTS | 1 Comment

It is time for better care at the end of life: a worldwide call to action from the OECD.

Posted on May 16, 2023 by pallcare

An important report from the Organisation for Economic Co-operation and Development (OECD) has highlighted common challenges and called for greater priority to be given to policies that improve how people experience the end of their life. Paola SILLITTI from the OECD tells us about their new report ‘Time for Better Care at the End of Life’ and why change is needed.

Populations around the world are ageing and people increasingly live with chronic diseases. In 2019, nearly seven million people needed end of life care across the 38 member countries of the OECD, a number expected to grow up to ten million by 2050. How can we make sure that people receive the high-quality care they deserve, and in the place that they prefer? Despite being a priority for many countries, there is still a long way to go for people who are in need to receive timely and appropriate care at the end of life.

Access to end of life care is still limited and care does not always reflect people’s wishes.

Only 40% of people in need receive end of life care and, despite a preference to die at home, many still die in hospital due to a lack of at home and community-based support and because mechanisms to ensure timely access are scarce. For instance, less than a third of the OECD countries have national programmes to monitor how long people need to wait between receiving a referral and accessing end-of-life care services. People’s preferences are also rarely recorded, with less than a half of older people having a document defining what end of life care they would want or nominating a person to speak on their behalf.

Mean percentage of people using palliative care or hospice who died at age 65 or over by country. Source: Survey of Health, Ageing and Retirement in Europe (SHARE – Waves 7-8), Health and Retirement Study (HRS – Wave 14).

When people receive end of life care, it is often inadequate.

Too much emphasis is often placed on treatment which hopes to cure the individual with not enough attention given to palliative care and their psychological and social needs. According to the Survey of Health, Ageing and Retirement in Europe, between 10% and 25% of people who died at the age of 65 or older had previously complained of receiving too little pain medication, or too little help with breathing or their anxiety. Alongside under-treatment, one third of older patients who are hospitalised at the end of life receive treatment that is not likely to provide comfort or prolong life, nor is it cost-effective. There are also marked inequalities in access with people from higher education twice as likely to receive end of life care services than those with low education.

OECD analysis suggests that in order to improve access to end of life care and to deliver more adequate and people-centred care, countries should address staffing shortages and improve health and care professional end of life training. It is also important that the stigma around death is addressed in order to create more conversations about the end of life – amongst health and care professionals as well as in society. Multidisciplinary teams, already in place in several OECD countries, can also support the delivery of good people-centred end of life care by facilitating advanced care planning (discussing and recording care preferences with patients and their relatives) and improving care co‑ordination.

End of life care also often lacks adequate funding.

Public funding does not cover all end of life care services across OECD countries, meaning that people who are at the end of their life, as well as their relatives, often have to pay, even when they cannot afford to. Existing public funding is mostly geared towards hospital settings which most likely restrains equal access to care in the community and other non-hospital settings.

Incentivising cost-effective end of lifeservices can support a shift towards more financially sustainable publicly funded care. For instance, international evidence has shown that non-hospital palliative care provides potential benefits for people receiving care and their relatives while also being cost-effective, reducing the use of acute care at the end of life and decreasing overall health expenditure.

The OECD is actively supporting countries to improve end of life care. This report is an important step forward, and the OECD will continue to collect international indicators on end of life care to support evidence-based policies that allow people to experience their own and their relatives’ end of life in the good and humane way they deserve.

Links and resources

About the author

Paola Sillitti is a Research Officer at the Health Division at the Organisation for Economic Co‑operation and Development (OECD). She has Bachelor of Science degree in Economics and a Master of Science in Economics and Management from Bocconi University. She has also studied Economics at HEC Lausanne and International Affairs at Sciences Po Paris. Twitter: SillittiPaola LinkedIn: paola-sillitti

Posted in ADVOCACY & POLICY, NATIONAL & INTERNATIONAL REPORTS | Leave a comment

The #EAPC2023 18th World Congress is nearly here!  

Posted on May 15, 2023 by pallcare

We are excited to say there is just one month to go to #EAPC2023! The EAPC’s 18th World Congress is live in Rotterdam on 15th-17th June 2023, and we can’t wait to see everyone in person again. Three days of inspiration, networking, meeting friends and colleagues. There’s still time to register! Here’s a sneak peek about what you can look forward to, as well as a very special announcement… 

An announcement! 

We are delighted to announce that our World Congress has been granted the patronage of the Secretary General of the Council of Europe, Ms. Marija Pejčinović Burić. 

EAPC President Christoph Ostgathe says, ‘This is a major first for the European Association for Palliative Care. To have our World Congress receive the patronage of the Secretary General of the Council of Europe, Ms Marija Pejčinović Burić is a great honour and is recognition of the importance of our work to promote and develop palliative care across the whole of Europe.’ 

An exciting #EAPC2023 programme! 

We have such a great line up to announce!  On Thursday 15th June to Saturday 17th June 2023, we are delighted to be joined in Rotterdam by speakers from over twenty countries globally including Portugal, Hungary, Jordan, Senegal, Australia, Japan, Canada, USA, India, Singapore and Uganda – truly showcasing palliative care from around the world.   

Registering for the Congress means you can access: 

  • The full Congress programme over three days 
  • Lectures from our plenary speakers – Kelli Stajduhar, Raymond Voltz, Mark Taubert, Ida Korfage, Zipporah Ali, David Hui, Per Sjögren and Barbara Sourkes 
  • Twenty parallel sessions 
  • Six interactive workshops 
  • Paediatric palliative care day 
  • Fifteen free communication sessions  
  • Nine award presentations 
  • Digital Legacy conference  
  • Science Slam  
  • Seventeen EAPC open group meetings – find out more about the great work of the EAPC groups
  • Twelve breakfast meetings 
  • Over six hundred posters, sharing the latest in palliative care research  
  • Special events such as Kathryn Mannix’s ‘About Books and Communication’ 
  • Plus help us celebrate the first European Palliative Care Day! 

There is so much to look forward to!  

“A focus on Equity and Diversity at EAPC is a welcome addition to the conversations required to enhance equity-oriented approaches to palliative and end of life care. I’m looking forward to our collective capacity to think deeply about what equity means in our field and to find ways to enhance it.” Dr. Kelli I. Stajduhar.

“I look forward to this year’s EAPC World Congress to learn about the latest developments in palliative care research that can transform clinical practice. The conference theme on Equity and Diversity is important because equity improves patient outcomes and diversity drives innovation” Dr.David Hui.  

“I can’t wait to join friends and colleagues at #EAPC2023. I have quite a few talks and workshops lined up, but oddly have more trepidations about the Science Slam, as my entry is a bit controversial, AND what happens if no one laughs? Horrifying! But I’m sure the wonderful palliative care community will be very forgiving. 

Equity and Diversity underpins this event, and I feel we cannot bang the drum about this enough, so have tried to create these important pillars in all my contributions. See you there”  Prof. Mark Taubert .

So don’t miss out! Register now.

We promise you an engaging, thought provoking and inspiring three days!  We look forward to seeing you there. 

Links 

  • Register for the congress here. (Up to 25% discount for EAPC members). 
  • View the full programme here. 
  • Read about the exciting choice of Congress workshops here. 
  • Don’t miss out on the latest congress news – follow  @EAPCvzw #EAPC2023 and read the EAPC blog. 
  • Click here to find out more about the first European Palliative Care day! 
Posted in 18th World Congress, EAPC ACTIVITIES, EAPC World Congresses | Leave a comment