Author Archives: Sue

Coping with grief during the holidays

As 2018 draws to a close, we hold in our hearts all of you who have experienced the loss of a loved one, whether recent or in the past. We know that holidays and special celebrations are particularly difficult when you are grieving. This article, written for ehospice by bereavement care expert Robin Fiorelli, was first published  in 2013 but her tips and suggestions are still relevant. May the memories of your loved ones sustain you through this difficult time and remind you that love never ends. We will be taking a break from posting articles over the next few weeks and would like to wish all our readers a blessed Christmas and a joyful and prosperous New Year.

Coping with grief during the holidays

The holiday season can be very difficult for people who have experienced the death of a loved one. Memories of good times and togetherness serve as reminders of our loss. Watching others who are feeling thankful and are celebrating with their loved ones when we feel overwhelmed, lonely or sad can be very painful. Holidays force us to realise how much our lives have been changed by the loss of our loved one. Particularly in the first year, many bereaved are left with having to develop new holiday rituals and traditions.

The first step in coping with grief at the holidays is to acknowledge that the first holiday season is difficult and then to prepare for it in advance by making specific plans and obtaining the support that you need. Sometimes anticipation of a holiday can be more difficult than the arrival of the day itself.


Tips for coping with grief during the holidays

Set realistic expectations for yourself. Remind yourself that this year will be different. Decide if you can still handle the responsibilities you’ve had in the past. Examine the tasks and events around celebrating the holidays and ask yourself if you want to continue doing them. Accept help to cook, shop, decorate, etc. Consider shopping online this year.

Surround yourself with people who love and support you. Share your plans with family and friends and let then know of any intended changes in your holiday routine. Memories can sometimes be a source of comfort to the bereaved. Share your memories with others of holidays spent with your loved one by telling stories and looking at photo albums.

Try to avoid “canceling” the holiday despite the temptation. It is OK to avoid some circumstances that you don’t feel ready to handle, but avoid completely isolating yourself. Allow yourself some time for solitude, remembering and grieving, but balance it with planned activities with others.

Allow yourself to feel joy, sadness or anger – allow yourself to grieve. It is important to recognize that every family member has their own unique grief experience and may have different needs related to celebrating the holidays. There is no right or wrong way to grieve. Experiencing joy and laughter does not mean you have forgotten your loved one.

Draw comfort from helping others. Consider making a donation in memory of your loved one. Invite a guest who might otherwise be alone for the holidays. Adopt a needy family during the holiday season.

Take Care of Yourself. Try to avoid the “hustle bustle” of the holiday season. Endorphins from physical exercise can help against depression. Writing in a journal can be a good outlet to express your grief. Buy yourself something frivolous that you always wanted but never allowed yourself to indulge in.

Create a new tradition or ritual that accommodates your current situation. Some people find comfort in the old traditions. Others find them unbearably painful. Discuss with your family the activities you want to include or exclude this year. Some examples of new rituals and traditions include:

  • Announce beforehand that someone different will carve the turkey this year.
  • Create a memory box filled with photos of your loved one or written memory notes from family members and friends. Young children could include their drawings in the memory box.
  • Make a decorative quilt using your loved one’s favorite colors, symbols or images.
  • Light a candle in honor of your loved one.
  • Put a bouquet of flowers on your holiday table in memory of your loved one.
  • Visit the cemetery and decorate the memorial site with holiday decorations.
  • Have a moment of silence during a holiday toast to honor your loved one.
  • Place a commemorative ornament on the Christmas tree.
  • Dedicate one of the Chanukah candles in memory of your loved one.
  • Write a poem about your loved one and read it during a holiday ritual.
  • Play your loved one’s favorite music or play their favorite game.

The most important thing to remember is there is no right or wrong way to celebrate the holiday season after the death of a loved one, and that the best way to cope with that first holiday season is to plan ahead, get support from others, and take it easy. 

Robin Fiorelli is Senior Director of Bereavement and Volunteer Services at VITAS Innovative Hospice Care, the nation’s leading provider of end-of-life care. For more information on VITAS, please visit www.VITAS.com or call 1-866-41-VITAS.

Why palliative care must be included in Universal Health Coverage

Today, 12 December, is Universal Health Coverage (UHC) Day. First celebrated in 2014, it marks the anniversary of the first unanimous United Nations resolution calling for all nations to provide affordable, quality health care for all their citizens. The day calls awareness to the human right to health. Universal Health Coverage has been included in the new Sustainable Development Goals for 2015- 2030.

What is Universal Health Coverage?

The Universal Health Coverage Day website describes UHC as follows:

UHC ensures all people, everywhere, can access the quality health services they need without suffering financial hardship. It is a fundamentally political goal rooted in the human right to health. It is also one of the smartest investments any country can make.

Key principles of UHC include:

  • Health is a human right, not a privilege
  • No one should go bankrupt when they get sick
  • Good health transforms societies
  • UHC is possible
  • Health for ALL is critical to the future we want by 2030
What is the role of palliative care in UHC?

The Lancet Commission on Palliative Care and Pain Relief has suggested a comprehensive package of care to be included within UHC packages which is cost-effective and affordable.

It is estimated that 61.5 million people experience serious health related suffering worldwide. Palliative care is beneficial to a broad range of people living with communicable and non-communicable conditions, from children to older persons, as well as their family members. An essential package should be available to all for the following reasons:

  1. Palliative care alleviates suffering and improves the quality of life of adults and children with life-limiting communicable and non communicable conditions and illnesses.
  2. Palliative care is cost effective and affordable, relieving the need for unnecessary hospitalisations and ineffective medical interventions.
  3. Adults and children with palliative care needs often have complex health conditions. Palliative care supports those with some of the highest health needs, and those who are particularly vulnerable to catastrophic expenditure on health.
Download the UHC Fact Sheet

The Palliative Care and Universal Health Coverage Fact Sheet, published in June 2018, was developed by the Worldwide Hospice Palliative Care Alliance (WHPCA), the International Association of Hospice and palliative Care (IAHPC) and ICPCN. The fact sheet information is based on the findings of the Lancet Commission Report on Palliative Care and Pain relief (2017).

This two-page document provides key facts, statistics and recommendations to help in national and international level advocacy.

A call to action – what can individuals do to raise awareness of the issue?
  • Inform yourself: Learn more about UHC.  Identify a problem within your family , network or community and explore what resources are available to help you advance health for all.
  • Share your story: Communicate your health care experiences, needs and opinions. Share your story on social media or local media to inspire others and help spark a larger movement.
  • Demand action: Hold your local and national leaders accountable for taking clear steps toward health for all.

Click on this link to hear Lucy Watts, an outspoken ambassador for the provision of palliative care as part of  UHC  speaking out and sharing her story on this Universal Health Coverage Day.

Hello, my name is Michael Mapenzi: a story for World AIDS Day

In honour of World AIDS Day tomorrow, Saturday 1 December, we wish to share a chapter from the ICPCN publication Touching Rainbows: Acknowledging the Child’s Voice in Palliative Care * written by Michael Mapenzi, an adolescent with AIDS cared for at Our Lady’s Hospice in Lusaka, Zambia back in 2010. The story may be old but hospices, particularly in African countries, still play a vital role in the care and support of children, adolescents and young adults with AIDS.

This is Michael’s story.

Hello, my name is Michael Mapenzi. I am 15 years old and am from the Kalingalinga compound in Lusaka, Zambia. I am the fourth born child of six children in my family. I started to become ill in 2009 when I developed a sore on my left leg. Over time, the sore worsened and my leg became very swollen. I also began to develop many itchy blisters surrounding the initial sore. Eventually, I had to leave school and was taken to the hospital, where doctors discovered that I was HIV positive and that I had a type of skin cancer called Kaposi’s sarcoma.

In May of 2010, my priest took me to Our Lady’s Hospice in Lusaka so that I could receive medicine for my illnesses. Unfortunately, doctors told me that both my HIV and Kaposi’s sarcoma are at an advanced stage and can no longer be cured, but I am on second line antiretroviral treatments and am undergoing chemotherapy so that I can try to get better.

Before I was admitted to the hospice, I used to get sick very often – I would usually get malaria or the flu. However, since I have been living at the hospice I have been feeling better. My nurse, Sobe, gives me medicine, washes and cleans my leg, and makes sure that I am feeling OK. Additionally, I receive morphine five times a day to help me deal with the pain in my leg. Because of the care that I receive at the hospice, I do not have much pain anymore, and now only my leg gives me problems, but the problems are not as bad as they were before. My leg is no longer in very much pain, it only itches.

At the hospice, I like to watch television and ride around in my wheelchair. But my favourite part about living there is the food! It is delicious and I get to eat a lot. However, there are times when I am bored. I hope that we will soon receive some video games or books to write in so that I may have new things to do while I am here.

“Every night before I go to bed, I pray that one day I can get back on my feet and be healthy.”

Michael drew this picture of his village while being cared for in the hospice

Although I like living at the hospice, I miss my old life very much. Before I became ill, my favourite activities were playing football with my friends and hunting for birds. I also used to love to cook for my younger siblings after school, and hang out with my older sister and little brothers. Unfortunately, since I have begun living at the hospice, I do not get to see my friends very much anymore. I miss them a lot. I sometimes ask the hospice matron to take me home to see my friends and my grandmother, but the matron says that she does not have transport money to do so. However, my friends do sometimes come to the hospice to bring me food, but this is the only time I get to see them. Every night before I go to bed, I pray that one day I can get back on my feet and be healthy.

Despite the challenges of living at the hospice, I am happy to be here. I have accepted that there is nothing I can do about my situation, so at least I am glad that I live at the hospice where I have access to medicine, and people are around to look after me. Also, at least my family gets to visit me every day, and they tell me that it is nice for them to see that I am no longer in much pain.

We were thrilled that Michael was given a copy of the book and got to see his story in print before he sadly passed away in 2011.

About World AIDS Day

World AIDS Day is an opportunity for people worldwide to unite in the fight against HIV, to show support for people living with HIV, and to commemorate those who have died from an AIDS-related illness. Founded in 1988, World AIDS Day was the first ever global health day. Globally, there are an estimated 36.7 million people who have the virus. Of these, 1.8 million are children (<15 years old). An estimated 1.8 million individuals worldwide became newly infected with HIV in 2017 – about 5,000 new infections per day. World AIDS Day is an opportunity to show solidarity with the millions of people living with HIV worldwide. Most people do this by wearing an HIV awareness red ribbon on the day. Find out more at www.worldaidsday.org

You can also download a copy of the  ICPCN Position Paper on Palliative Care and Children Living with HIV and AIDS

* About Touching Rainbows

Through the book, ‘Touching Rainbows: Acknowledging the Child’s Voice in Palliative Care’ we have the privilege of hearing the voices of some of the many children whose lives, and those of their families, have been affected by life-threatening conditions. The children tell their stories with honesty and openness, through stories, poems and pictures. Children and their families from across the world share their experiences, either from the child themselves or from those who love them, such as their parents or brother and sister.

The stories, often told in the child’s own language and translated into English, are an inspiration to us all. It is hoped they will touch and enrich the lives of many, encourage those travelling a similar path, and instill a sense of courage and joy, despite the many challenges and heartaches. You can order your own a copy of the book here.

Inauguration Ceremony of Children’s Palliative Care Foundation and Children’s Palliative Care Symposium takes place in Hong Kong

The Children’s Palliative Care Foundation Inauguration and Children’s Palliative Care Symposium 2018 was held in Hong Kong on Sunday, 14th October 2018. The event was held in the Lu Guan Qiu Lecture Theatre at The Hong Kong Polytechnic University. It was co-organised by The Hong Kong Society of Children’s Palliative Care and the Department of Health Technology and Informatics, The Hong Kong Polytechnic University and  supported by The Hong Kong College of Paediatricians,  The Hong Kong College of Paediatric Nursing and The Hong Kong Paediatric Haematology and Oncology Study Group.

19 years pioneering children’s pallaitive care

The day was chaired by Dr Stephen Chan, Associate Consultant Paediatrician, Caritas Medical Centre and Dr Vicky Tao from Queen Mary Hospital. The day got underway with Ms Molin Lin, Professional Services Manager from the Children’s Palliative Care Foundation and Children’s Cancer Foundation sharing about the 19 years of pioneering children’s palliative care provided through the Children’s Cancer Foundation.  The Foundation first set up a palliative care and home care service for children in November 1999 with the aim of providing specialist palliative nursing care for children with advanced cancer in their home.  Care is child and family centred and over the years the service has expanded to include not only end-of-life and bereavement care but also since 2011 care has been extended to non-cancer patients, thus developing a service model for the provision of care in the home for all children needing palliative care. Challenges do however exist, including the issue of no respite care, need for transitioning children to adult services and continuing to promote the concept of children’s palliative care with community education being vital.

Mr Edward Yu, Chairman of the Governing Committee of the Children’s Palliative Care Foundation then welcomed everyone to this inauguration and symposium. He shared that 4,000 children in Hong Kong need access to palliative care. He thanked everyone in the CPC family for all that they are doing to care for children and their families, without whose concerted efforts this inauguration would not be happening. He stressed the ongoing support of the Governing Committee of the CPCF and hopes that the Hospital Authority will give their support to the ongoing development of CPC in Hong Kong. His welcome was followed by a video of the history of CPC in Hong Kong. The video showed the developments since 1999, including that since the programme has started seeing children with non-oncological conditions, their hospital visits have reduced from an average of 70 days stay per child per year to an average of 10 days stay per child per year.

Inauguration ceremony

In her Officiating Speech, the Hon Mrs Carrie Lam Cheng Yuet-ngor, Chief Executive of the Hong Kong Special Administrative Region noted how pleased she was to be at this inauguration and symposium. Since she took office, she has been emphasising a people oriented approach to care and the importance of cross sectoral collaborations such as with the Children’s Palliative Care Foundation. She noted the right to palliative care for children and that the Hospital Authority attaches great importance to enhancing CPC including its integration into the new children’s hospital due to open in December 2018. The PC team at the hospital will work from a hub and spoke model with the team consisting of multi-professional paediatricians, nurses, social workers etc. She wished the Foundation every success in the future and is looking forward to working with them to strengthen children’s palliative care provision in Hong Kong. Following her speech the inauguration ceremony took place by the Hon Mrs Carrie Lam Cheng Yuet-ngor, Mr Edward Yu, Mr Tony Ho Chairman of the Children’s Cancer Foundation, Dr Leung Pak-yin, Chief Executive of the Hospital Authority, Prof Li Chi-kong, Chairman of the Hong Kong Society of Children’s Palliative Care and Prof Julia Downing, Chief Executive of ICPCN.

The importance of palliative care from a parent’s perspective

Mr Benson Cheung, Governor of the Children’s Cancer Foundation then shared his reflections of being a parent whose son Hayden was diagnosed with stage IV neuroblastoma at the age of 2 ½. He shared how palliative care is so important from a parent’s perspective, but that many parents don’t know what palliative care is and so it needs to be explained to them. He stressed the importance of having someone walking alongside you as a parent so you don’t feel alone, as having a child with cancer is a life changing moment which gives you a different perspective to life. He finished with the quote “Don’t cry because it’s over, smile because it happened” (unknown).

Challenges and benefits of children’s palliative care

Prof Julia Downing spoke of challenges and benefits of CPC and global developments in the field

The rest of the morning revolved around the benefits and challenges of children’s palliative care, bereavement support in neonatal intensive care, the current situation and future development in Hong Kong, and the global development of children’s palliative care. Prof Downing discussed the challenges and benefits of children’s palliative care – emphasising the impact that we can have on the quality of life for children and their parents. How palliative care is about living – ensuring that the child can live as well as possible throughout their life. Whilst challenges exist, these can be overcome and it is important to look at how best we can reach all the children in need of palliative care. Prof Li Chi-kong and Dr Man Sze-shun, Associate Consultant, Hong Kong Children’s Hospital, then looked at the current situation of children’s palliative care in Hong Kong and looked ahead to future developments.

Milestone in CPC in Hong Kong

This inauguration and symposium was seen as a milestone for CPC in Hong Kong and great to have government and health authority support for CPC. It was noted that there are already limited services for CPC in the public sector but that these services need to grow and develop and that whilst Adult Palliative Medicine has been a medical specialty since 1998, this is not yet the case in paediatrics. In the future a Hong Kong wide model for children’s palliative care will be integrated with care being provided at any time, any place and for any condition, developing integrated and shared care teams with parents, thus enhancing community support and partnership.

Global development of children’s pallaitive care

Ms Chan Yin-ling, Advanced Practice Nurse, Neonatal Intensive Care Unit, United Christian Hospital shared her experience of providing bereavement support in a neonatal intensive care. The NIC Unit is a place to save life but also to allow babies to die in dignity. Nurses therefore have a key role in the provision of bereavement care and shared a framework for bereavement support in the NIC Unit. Following this Prof Downing discussed the Global development of children’s palliative care, sharing about the work of ICPCN, and the need for the ongoing development and support for CPC around the world. She shared examples of best practice and looked ahead at the future of CPC.

Panel discussion

Finally, a panel discussion was facilitated by Prof Li Chi-kong, with all of the speakers, looking at a roadmap and strategies in the development of CPC in Hong Kong. It was felt to be an exciting time for CPC in Hong Kong with the days inauguration and symposium being a key event in the development of CPC in Hong Kong.

Training for professionals on children’s palliative care in Moldova

Last week Alex Daniels, ICPCN’s Education Officer represented ICPCN at a children’s palliative care (CPC) training workshop held in the city of Chisinau.  It was her first visit to the capital city of Moldova, a country with a population of just over 3.5 million situated between Romania and the Ukraine. She has written the following report for ehospice.

The workshop was one of two 3 day training sessions made possible by partnerships between Coram Deo, Krebsallianz, the School of Public Health, and Hospices of Hope Moldova, Cancer Institute and ICPCN. The training workshops were facilitated by Dr Pavel Burykin, Board Member of ICPCN and Paediatrician at the Belarusian Children’s Hospice and Maria Dyakova a trained nurse, doctor and physical therapist with many years of experience in CPC in Moscow.

The course aimed to increase participants’ understanding of the general principles and practice of CPC and a range of relevant subjects were discussed during the three day training sessions.

First training workshop

In the week prior to my visit twenty three participants from Hospices of Hope attended the first training workshop held at the Institutul Muncii (Labor Institute). The group comprised of 6 doctors, 6 nurses, 6 social workers and 5 psychologists with some experience of working within the area of palliative care with adults though exposure to children was limited. Despite the challenge of travelling long distances in order to get to the training venue, participants remained committed and enthusiastic about the training.

Early on a sunny October morning in Chisinau, facilitators and organizers prepared for the second training workshop at the Hotel Vila Verde. The comfortable conference room quickly began to fill up with mix of twenty two health care professionals from Cancer Institute and Mother and Child Institute: this time distribution differed somewhat with 14 doctors, 5 nurses, 1 psychologist, 1 teacher and 1 health administrator.   Most of these professionals worked with children but exposure to and knowledge of children’s palliative care was limited.

Visit to the remote village of Oxentia

Thanks to hosts, Vladimir Cerbov of Coram Deo and Fiona Bewley from Krebsallianz my very brief visit to Chisinau exceeded expectations in that I was able to get a real sense of both city and semi-rural life and meet some special people too. Sasha (Coram Deo) drove us out of Chisinau and headed in a northerly direction down potholed roads lined with trees covered in beautifully coloured autumn leaves and, after about 90 minutes, we arrived in the remote village of Oxentia. I was told a bus from Chisinau arrived every fortnight to transport residents to the city.  Accompanied by one of Coram Deo’s local partners we visited four families who have been jointly supported by these organizations over a period of time.

Impact of poverty on health

During my visit I was exposed to the impact of poverty on  health, challenges related to accessing care for children with disabilities, the reality of gender based violence, caregiver burden and unresolved grief issues.  Despite the reality and challenges of daily life, caregivers persevered and provided best possible care to their loved ones.  Later that day, back in Chisinau, Dr Julia Colesnic showed me around the Paediatric Haematology ward at the Cancer Institute where children from all over the country received their treatment.  I was impressed by the work of Krebsallianz in making cancer treatment possible for many Moldovan children and adults.

Decision makers ‘hooked’ and committed

The two training workshops were successful in that forty five health care professionals were provided with an introduction to CPC but moreover decision makers in the healthcare system have been hooked and demonstrated their commitment to the development of CPC in Moldova. Hospices of Hope have agreed to not only play a pivotal role in supporting participants through follow up and mentorship, thus ensuring theoretical components of the training are transferred to clinical practice but also to expand training to their mobile teams.  The support of the School of Public Health is critical in developing CPC further in the country. Following the training, the Ministry of Health sufficiently impressed with the workshops made personal contact with our local partners to express gratitude for the training and its contribution to palliative care in the country.   This is a very exciting time for CPC in Moldova as the quality of life of children and families with life- threatening can life- limiting conditions across all regions of Moldova can only improve.

 

Report on 4th Global Gathering Maruzza Paediatric Palliative Care Congress in Rome

Dr Franca Benini and Sylvia Lefebvre D’Ovidio at the opening ceremony for the congress

Education Officer for ICPCN, Alex Daniels, attended the recent 4th Global Gathering Maruzza Congress on Paediatric Palliative Care held in Rome. She shared the following report back on the congress with ehospice.

Recently I attended the 4th Maruzza Congress held at Auditorium Antonianum in the city of Rome, Italy. It was my first visit to the Congress and following a full day of pre-conference activities, the tone of the opening ceremony in the evening of Wednesday 24th, prepared me for a memorable gathering. Nearly 400 delegates from over 40 countries and 5 continents gathered in the Auditorium to be warmly welcomed by Franca Benini and Silvia Lefebvre D’Ovidio on behalf of the Maruzza Lefebvre D’Ovidio Foundation.

Thinking outside the box

In keeping with the conference theme “Thinking outside the box”, Ross Drake commenced the evening’s programme by facilitating a fascinating double interview with the incredible Caterina Albertini and Stefano Spigler on “The Importance/Meaning of Time”.   The illustrious Joanne Wolfe received the Vittorio Ventafridda Award and in her key note address she discussed CPC as a game changer for paediatrics as a ‘disruptive innovation’.  Another CPC milestone was reached with the launch of “Integrating Palliative Care and Symptom Relief into Paediatrics “, a WHO guide for health care planners, implementers and managers.  Cho Hee Kim received the No pain for Children Awards 1st prize winning abstract for “ Pediatric death attributed to life-limiting conditions in Republic of Korea: exploring the nation-wide pediatric palliative care needs “ and the best video children’s hospice was awarded to Nino Kiknadze for Firefly World.

The following day delegates were treated to a range of engaging poster presentations and informative break away sessions. In the morning plenary session, David Steinhorn traced a fascinating history of Galenic medicine and traditional remedies. Stephen Connor contextualised the global CPC issue: over 21 million children requiring palliative care of whom 98% live in LMIC – these figures came up repeatedly throughout the conference. In his presentation on drug routes and approaches, Sat Jassal encouraged delegates to work in a collaborative form and stressed the need for good quality research. Finella Craig and Myra Bluebond- Langer raised important considerations around the needs of young adults and transitioning. The opportunity to network, share and learn from each other was highlighted by Julia Downing in a breakaway session entitled Networking to increase access to CPC: the ICPCN experience. Stefan Friedrichsdorf ‘s networking session was the cherry on top of a perfect day, he hooked his audience, shifted attitudes , provided new knowledge and skills in an engaging presentation on Preventing or Reducing Needle Pain for Hospitalized Children.

Day two

Alex Daniels with her poster presentation at the congress

Day two of the conference offered delegates more high quality research with poster and oral presentations but once more it was the plenary sessions that stood out for me. Daniel Garros highlighted the significance of getting to grips with the life values of each patient and their families in the PICU setting. In an outstanding session on PPC and Paediatric specialities which provided plenty of food for thought. Richard Goldstein raised the issue of uncertainty in children without a diagnosis and disclosed that grief and bereavement was worse in those families where there was no diagnosis. Michelle Meiring drew attention to the poor distribution of doctors across the globe, the devastation chronic communicable diseases still caused in the developing world and the need for collaboration with infectious disease specialists to address this issue.  Ana Lacerda raised the need for palliative care education and training in all areas of paediatric oncology and the understanding of culture as fundamental to collaboration between paediatric oncology and paediatric palliative care practitioners.

Final morning

On the last morning of the Congress in an informative presentation entitled The Representation of end of Life: Media and PPC, Matteo Asti encouraged us to consider how we advocate and promote PPC.  In the final session of the morning facilitated by Ann Goldman and Justin Baker what was new in PPC was examined. A range of both personal and professional perspectives were shared by an interesting panel of individuals notably Omar Leone who shared his touching and insightful personal journey. In addition Kevin Kajitani and Akira Fukabori, young innovators in the aviation industry explored avatars as real live physical systems with seemingly endless opportunities to expand human experiences.

Despite a full Congress programme which served to increase knowledge, expose delegates to new experiences and innovative approaches in the development of paediatric palliative care, networking over refreshment breaks was perhaps the Congress’s greatest strength. I thoroughly enjoyed meeting new people from all parts of the globe whilst sampling a variety of delicious Italian food and drink. Thank you to the organisers for a great Congress!