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Palliative care at the 70th World Health Assembly

Kate Jackson reports from Geneva
25 May 2017

A palliative care delegation, including representatives from the Worldwide Hospice Palliative Care Alliance (WHPCA), the International Association for Hospice and Palliative Care (IAHPC), the International Children’s Palliative Care Network (ICPCN), the Pain and Policy Studies Group at the University of Wisconsin, and the Rwanda Palliative Care and Hospice Organisation (RPCHO), are attending the 70th World Health Assembly.

Held annually in Geneva, Switzerland, the World Health Assembly (WHA) is the decision-making body of the World Health Organization. It is attended by all WHO Member States and focuses on a health agenda prepared by the Executive Board.

This year’s WHA saw the election of Dr Tedros Adhanom Ghebreyesus, former Minister of Health of Ethiopia, to the office of WHO Director General, replacing Dr Margaret Chan. Dr Tedros is the first person from Africa to be elected to the top job.

During his inaugural address, Dr Tedros reminded the global health community that Universal Health Coverage (UHC) would be his “central priority.”

UHC means that all people and communities can use the promotive, preventive, curative, rehabilitative and palliative health services they need, without being forced into financial hardship.

It is driven by equity and human rights, as every person deserves access to quality, affordable health services, including palliative care.

Palliative care is a defining aspect of Universal Health Coverage, and as such, vital to achieving the Sustainable Development Goals (SDGs).

Key agenda items for the palliative care delegation this year include: promoting the health of refugees and migrants, preparation for the High Level Meeting on NCDs, discussion on the Global Action Plan on Dementia, the public health aspect of the ‘World Drug Problem’ and access to essential medicines, cancer control, issues affecting women, children and adolescents, and progress in implementation of SDGs.

Key palliative care messages were consulted on with palliative care advocates and practitioners worldwide before the meeting to ensure that the voice of those working on, and affected by, palliative care was being heard and represented by the delegation.

Professor Julia Downing, Trustee of the WHPCA & IAHPC and Chief Executive of ICPCN, and Dr Katherine Pettus, IAHPC Advocacy Officer, will give verbal interventions during the sessions on: promoting the health of refugees and migrants, the draft global action plan on the public health response to dementia, cancer prevention and control in the context of an integrated approach, and the public health dimension of the world drug problem, among others.

You can view the WHA agenda on the WHO website, follow the proceedings on Twitter using the hashtag #WHA70, and watch a live webcast on the WHO website.

HRH The Duchess of Cambridge expresses her support for UK’s Children’s Hospice Week

The Duchess, as Royal Patron of East Anglia’s Children’s Hospices (EACH), has seen first-hand the remarkable work that children’s hospice services like EACH provide for children and families – helping families to make the most of every precious moment.

In the message The Duchess asks everyone to join her this Children’s Hospice Week, to celebrate and shine a light on the extraordinary children’s palliative care and hospice services that are there for the UK’s 49,000 children and young people with life-limiting conditions. There is a real need to raise awareness of children’s hospices and palliative care services, so more families know where to turn for help. The Duchess’s support will mean so much to children and families – it will give them, and the services that support them, a real boost.

Barbara Gelb OBE, CEO for Together for Short Lives said:
“We are so thrilled that Her Royal Highness is supporting Children’s Hospice Week. The Duchess’s words, and her amazing support for Children’s Hospice Week since 2013, have been transformational, helping to raise awareness of the needs of seriously ill children and families and to show that help is at hand.

“Families coming to terms with the heart-breaking news that their child will die young often say that it is the most isolating time and they simply don’t know where to turn for help. That’s why the Duchess’s words are so poignant – it’s a clear message that help is available from the remarkable children’s hospice and palliative care services right across the UK. This support can make a world of difference for families.”

In the video message The Duchess says:
“For any parent, being told that your child may have a life-limiting condition, or may die young, will be one of the most difficult and isolating experiences you can face.

“Having someone to help you come to terms with this news, and the professional support and care that comes with this, can make an enormous difference. It can help families make the most of every precious moment they have together.”

“As Patron of EACH I have seen the incredible difference that children’s hospice and palliative care services can make for children, young people and their families.”

“Across the UK more than 49,000 children and young people have life-limiting conditions. For these families, having expert care and support is vital, and this is what children’s hospices provide. They deliver first class care in a safe environment that feels as close to home as possible, full of colour, warmth, love and support.”

“Today as we mark the beginning of Children’s Hospice Week – I hope you will join me in shining a light on the dedicated and inspirational staff and volunteers, and the lifeline services they provide for children and their families.”

“The work they do is extraordinary, and it really does make a world of difference.”

The Duchess’s video message was recorded on a visit to meet children and families at EACH at Quidenham, in January 2017. The video soundtrack is Lego House, by EACH Ambassador Ed Sheeran.

Children’s Hospice Week (22-28 May) is the UK’s only awareness and fundraising week for children with life-limiting conditions and their families, and the hospice and palliative care services that support them. Children’s hospice services are all charities and rely on the generosity of the great British public to deliver their lifeline care and support. This year Children’s Hospice Week will be turning up the volume on children’s palliative care to shine a light on what life is like for families caring for children with life-limiting conditions, and to amplify their voices. It’s also a call for support: these families don’t have time to wait to get the care and support they desperately need.

Click here for the full article on the Together for Short Lives website.

Perinatal Pathway for Babies with Palliative Care Needs – a vital new resource from UK charity

Last week the UK Charity, Together for Short Lives, launched a vital resource for babies expected to have very short lives - The Perinatal Pathway for Babies with Palliative Care Needs.The pathway has been developed by Together for Short Lives with expert input from leading ethicists and clinicians working across obstetrics, antenatal and neonatal care, and children’s palliative care. It can be downloaded for free.

The death of a baby, in the first hours, days, weeks or months of life, is a tragedy. The majority of child death happens in the first 28 days of life, and on average in the UK there are 2,109 deaths each year from causes likely to require palliative care with 98% of all deaths occurring in a hospital setting.

If a life-threatening condition is identified in pregnancy it can be helpful to introduce elements of palliative care in the antenatal period – to enable families to get the support that they need to plan for the future care of their very poorly baby. That’s why, they have developed a dedicated care pathway from the point of recognition that a baby has a life-threatening condition and may not survive for long after birth and through their neonatal period.

They wish to ensure that every parent, coming to terms with the news that their baby may not survive or will have a very short life, receives the best possible care and support whether they are in hospital, at home or in a children’s hospice. The loss of a much-longed for baby is unbearable. Some families may only have a few days or hours with their baby – and it’s vital that they can spend as much quality time as possible close to their baby. We want to ensure that families dealing with this heart-breaking news have the best opportunity to make lasting memories with their child, even if their baby only lives a matter of moments.

The new care pathway is designed to support all professionals working in fetal medicine, antenatal, neonatal and maternity services to deliver sensitive and timely support at this heart-breaking time, enabling families to spend time with their baby, bonding and building memories, in a more home-like environment, and with as little technologically dependent care as possible.

It encourages professionals to work together across multidisciplinary teams and local services to provide the best response to families during a distressing and uncertain time. For example, by building relationships with local children’s hospices and palliative care charities that are increasingly supporting families and their babies at the end of their short life. Better understanding of, and good relationships with local services could mean families are offered more choice, especially when a baby may only live a few hours or days.

Lizzie Chambers, Development Director at Together for Short Lives, says:

“We hope that this updated care pathway will help all professionals working within fetal, maternity and neonatal services to offer families timely choices in their care. Perinatal palliative care is changing rapidly. Medical advances mean that babies with serious illnesses are identified earlier – often antenatally – and ever higher levels of technological support in the Neonatal Intensive Care Unit means that these very sick babies often survive much longer.”

“Our pathway is here to support staff working in these highly pressurised environments to help families when it’s recognized that further treatment will not save their baby’s life. It provides a framework to help them to work with families at this most difficult of times. Our ambition is for parents to be supported to spend quality time with their baby, to build memories and to cherish the last hours, days or weeks of their baby’s life.”

The Perinatal Pathway for Babies with Palliative Care Needs offers professionals clear guidance from the point of recognition that a baby has a life-limiting condition; ongoing care of the baby throughout their short life; end of life planning; and continuing care for the family into bereavement. The pathway is endorsed by BAPM (British Association of Perinatal Medicine), Bliss, the charity for babies born premature or sick and Child Bereavement UK.

This pathway is one of a suite of care pathways from Together for Short Lives which includes the Core Care Pathway, the Extubation Care Pathway and Stepping Up - a revision of the former Transition Care Pathway. It can be downloaded for free at: www.togetherforshortlives.org.uk/perinatalpathway.

Read the full article on the Together for Short Lives website.

Crossing borders for children’s palliative care

Joan Marston reports on the ICPCN training of healthcare workers in Lesotho and a series of visits these trainees have made across the border to Sunflower Children’s Hospice in Bloemfontein, South Africa.

In January a team from the ICPCN spent a week in Maseru, Lesotho , teaching children’s palliative care to a group of 26 health care professionals and chaplains/pastors from all regions of Lesotho. In collaboration with the Lesotho Ministry of Health ICPCN arranged for these students to cross into South Africa to experience children’s palliative and hospice care in action at Sunflower Children’s Hospice in Bloemfontein. In addition the doctors and pharmacists are also placed at Universitas and National District Hospital working with Prof Hanneke Brits and Dr Jan du Plessis.The placements include time with Sr Melinda Muller and members of the multi-disciplinary team in Sunflower House and participation in an IDT meeting, case study and ethics discussion; spending time with patients as they receive occupational and physiotherapy; observing the teacher stimulating the children who are able to enjoy class each morning; going out into the community with the Community Coordinator Olga Mohlaloe on home visits and experiencing the social challenges of many of the patients; learning about the importance of data capturing and reporting from Tshegofatso Taunyane and participating in a spiritual care and Chaplaincy meeting with Hanneke Lubbe.

Discussions include the various diagnoses that the children have, medicines that are prescribed for the children, the difficulties many have with feeding and maintaining good nutrition, the importance of ensuring each child feels loved and cared for and the need for safe care when the families are unable to take the child back into the home.

The programme is quite intense and so far two groups of nurses, doctors and medical technologists have been to Bloemfontein for their placements, with another two groups to be placed in June.

Students have expressed a wish to have a similar children’s hospice programme in Lesotho but realize that this could be challenging in such a poor country, with one of the highest incidences in the world of HIV. With LeBoHA, an NGO working with ICPCN in Lesotho, and the support of the Ministry of Health they plan to roll-out training across the Mountain Kingdom with support from ICPCN and mentorship from new-found friends and colleagues at Sunflower Children’s Hospice.

How will the US Health Bill affect children with palliative care needs?

On Thursday 4 May 2017, House Republicans in the United States narrowly approved a much maligned and controversial plan to dismantle the Affordable Care Act. The Bill, called the American Health Care Act, was passed by a very narrow margin. Negotiations prior to it being passed have not only deeply divided Republicans and the Democrats (none of whom voted for the Bill) but also exposed some deep disparities between moderate and more conservative members of the Republican party. The Bill, which will replace the previous Affordable Care Act (ACA), also known as Obamacare, now moves to the Senate, where it is expected to face further difficulties and strong opposition.

Although an amount of $8 billion was included in the plan, to be spent over five years to help subsidise people with pre-existing conditions, the Bill allows states to opt out of coverage for those with these conditions.

It is estimated that 27% of Americans under the age of 65 have pre-existing conditions which include cancer, heart disease and diabetes. These vulnerable adults and children were not prejudiced by the ACA, signed into law on 23 March 2010 by President Obama.

Do no harm
The American College of Physicians, the nation’s largest medical specialty organisation, have placed a news release on their website which leads with the words: Proposed ACA Replacement Fails to Meet Criteria to ‘First, Do No Harm’

“The bill passed by the House today will result in millions of Americans losing access to quality, affordable health insurance and those with pre-existing health conditions face the possibility of going back to the time when insurers could charge them premiums that made access to coverage out of the question,” said American Medical Association (AMA) President, Andrew Gurman.

He conceded that the country’s present healthcare system was in need of improvement.

“The AMA urges the Senate and the Administration to work with physician, patient, hospital and other provider groups to craft bipartisan solutions so all American families can access affordable and meaningful coverage, while preserving the safety net for vulnerable populations,” he said.

Catastrophic
Reacting to the news on social media, Lanise Shortell, a pediatric palliative care nurse wrote, “Such a sad day for our country and families of medically fragile and terminally ill children.”

She also notes, “As insurance companies all have caps on how much they will pay, this means that all of us and our children are one catastrophic diagnosis away from bankruptcy. Unfortunately, many don’t realise this until they find themselves in the shoes of families I care for every single day.”

We would be interested to hear your thoughts in the comments section below.

Keynote speakers for the 8th International Cardiff Conference on Paediatric Palliative Care

Cardiff University in Wales, UK, is looking forward to hosting the 8th International Cardiff Conference on Paediatric Palliative Care in July this year. The theme for the conference is “Worlds apart: culture and context in caring for the whole child”  which will bring into focus the claim of children’s palliative care that we care for the child ‘holistically’.

Conference Chair, Dr Richard Hain, writes, “In practice, when we talk about holism we mean many different things. The idea of ‘holistic’ care is an acknowledgement that the child’s existence is complex; that it is more than the physical and includes the spiritual and psychosocial, and that the child’s illness is not separable from the child him- or herself. It expresses a commitment that in palliative care we are going to try and remember all these dimensions when it comes to caring for each individual child and family.”

Expounding further on the the theme Dr Hain also notes that the conference “will consider the challenge of providing the same standard of care for children and their families in countries across the world, in the face of cultural contexts that can be vastly different in the way they understand medicine, dying, palliative care, ideas of family – and even the way they think of and value children themselves.”

Keynote speakers
The three highly regarded conference keynote speakers will bring their own respected expertise and vast depths of experience to share with delegates. They are:

Dr Ann Goldman, a paediatrician, now retired has a background in paediatric oncology. In 1986 she established the Symptom Care Team at Great Ormond Street Children’s Hospital, which was the first multidisciplinary paediatric palliative care team. She was also the first medical consultant in paediatric palliative care.

Dr Goldman has worked in clinical care for the children and their families, research, teaching and has been involved in the development of palliative care services for children nationally and internationally. In 2004 she was awarded The Children’s Hospice International Outstanding Leadership award and in 2014 the Vittorio Ventafridda Award for her overall contribution to Palliative Care for Children. She has written a variety of research articles, chapters and books and is an editor of the Oxford Textbook of Palliative Care for Children.

Dr Michelle Meiring is a Paediatric Palliative Care Paediatrician at the Red Cross Memorial Children’s Hospital in Cape Town, South Africa. She is also the Founding Director of Paedspal, an NGO that provides a paediatric palliative care service to public and private patients in Cape Town, and the Chair of the national children’s palliative care network, PatchSA.

Dr Meiring has a special interest in chronic pain management. She convenes the Post-Graduate Diploma in Paediatric Palliative Medicine at the University of Cape Town (UCT) and is also engaged in national policy making in South Africa.

Dr Adam Rapoport is a general pediatrician with a Masters degree in bioethics. In 2009, Dr Rapoport joined the Temmy Latner Centre for Palliative Care at Mount Sinai Hospital as their paediatric consultant. In July 2011 he became the first Medical Director of the Paediatric Advanced Care Team (PACT), the palliative care service at SickKids. PACT provides both inpatient and outpatient palliative care to children with life-threatening illnesses, and their families, including grief and bereavement support.

In 2013 he became Medical Director at Toronto’s first paediatric residential hospice, Emily’s House. Dr Rapoport’s academic work focuses on the intersection of his three primary interests, these being paediatrics, palliative care and ethics.

Find out more about the conference and register now at http://www.icpcn.org/cardiffppc2017/