What happens when palliative care intersects with other specialties?

Loving Brandon was hard. Not because of Brandon – he was a beautiful boy. He had beautiful eyes and a gentle heart.  He loved massages and his face lit up during sensory therapy. He also had severe brain damage and limited ability to communicate. We could never know for sure how much he did or didn’t understand, but we feel certain he knew his people and he understood love.

Loving was not hard because of Brandon. It was hard because it hurt so badly to watch him suffer. On top of his severe cognitive challenges, Brandon had a contagious respiratory infection. That meant there were lots of rules around how and where he could be cared for. The rules came from a good intentions –  intentions to help cure and to protect others from infection. But for a child who already has a life limiting condition, those rules were pretty hard to understand.

Brandon only had a small circle of people who really knew him. He couldn’t speak up like a typical kid and tell someone when he was hurting, sad or sick. It broke our hearts when he moved to a specialty  respiratory diseases facility, even though it made sense medically. We knew that no treatment on earth could offer him a long life, so we wished for his remaining time to be peaceful. We wanted him to have security, comfort and a predicable routine – things we knew were important to him.  But treatment for his respiratory condition plunged him into a new routine, a new system, and left him surrounded by strangers. Kind strangers for sure – but they didn’t know Brandon.

There are no easy answers in palliative care.  Brandon’s story will always break our hearts. We are thankful we were able to visit with him in his isolation unit, but incredibly sad he was not at home when he died. These situations push us to keep talking, keep asking ourselves the hard questions – what happens when palliative care intersects with other specialty areas? Sometimes different branches of health care  act in synergy –  mental health, physiotherapy and many other specialties are vital components of end-of-life care. But sometimes it’s not so simple. The right thing in one book is not the right thing in another. We are so grateful that these discussions are part of medical practice these days. Our hard conversations belong to a wider debate. Scientists and doctors around the world are studying and talking about these issues.

For us, right now, we are feeling sad that Brandon has died without returning home. We wonder if we failed him somehow, if we could have changed things. It’s a pretty normal part of grief to ask these questions, but its also part of understanding and processing this painful sorrow.  By seeking to understand, we are seeking to find a way forward,  to figure out what our hearts say about some of those hard questions. Sure, there’s a whole lot of research going on – but sometimes what your heart tells you makes a lot of sense.

For us, right now, our hearts are feeling incredibly sad.

The article above is republished with permission from Butterfly Children’s Hospice. Read other articles at their blog here.

Communication – Paediatric Longitudinal Assessment of Needs (PLAN)

content%202%20-%20jul%20forum1From Lien Collaborative for Palliative Care Newsletter

The Paediatric Longitudinal Assessment of Needs (PLAN) framework, designed and used by the team to facilitate interdisciplinary communication during meetings, was presented at the monthly SHC-LCPC multidisciplinary forum. Mr Desmond Tan, a medical social worker, and Ms Li Kejia Lily, a registered nurse, both are part of the multidisciplinary team at home based Star PALS (Paediatric Advanced Life Support) programme at HCA.

There were five dimensions the team needed to assess.

  1. Physical and nursing care where diet and symptoms needed to be managed.
  2.  Practical and financial aspects such as the equipment loans and financial assistance.
  3. Spirituality for existential issues.
  4. Family and social aspects such as getting community and bereavement support.
  5. Handling grief, including negative emotions

Read the full article here.

Barry Ashpole’s Media Watch (#481)

Barry Ashpole Media Watch

The latest issue of Media Watch, compiled and annotated by Barry R. Ashpole (Ontario, Canada) can now be downloaded here. More reports can be found at IPCRC.NET

Articles from Asia Pacific Region:

Palliative care centres hit by shortage of docs, morphine

INDIA (Maharashtra) | The Hindu (Mumbai) – 18 September 2016 – Two years after palliative care centres were set up in eight of Maharashtra’s most backward districts, six are without doctors, only five have morphine licences and three actually having it in stock. While nurses and medical social workers are available, they are not palliative care specialists. More importantly, they cannot prescribe the pain-relieving morphine. Palliative care doctors on contracts were posted at these centres until last year, but left due to a four-month delay in salaries, sources said. Despite an amendment to allow healthcare facilities to stock and dispense morphine, it is not readily available at the palliative care centres. The morphine or the doctors licensed to dispense it are not around. Besides better awareness on the availability of morphine, comprehensive training for caregivers is also needed. https://goo.gl/ARPVOy

 Article highlighted to be of particular interest:

The Day Two Talk: Early Integration of Palliative Care Principles in Pediatric Oncology

JOURNAL OF CLINICAL ONCOLOGY | Online – 19 September 2016 – Since 2000, the number of hospital- and community-based pediatric palliative care services, fellowship training programs, and educational opportunities for non-specialists has dramatically increased. With this growth, the importance of the early introduction of pediatric palliative care, regardless of stage and prognosis, has been repeatedly demonstrated and has shown to substantially affect outcomes in multiple areas including patient symptoms and suffering. The day two talk guides pediatric oncology clinicians without specialty training in pediatric palliative care, in integrating principles of pediatric palliative care at diagnosis in a manner that allows for ongoing exploration throughout the course of a patient’s treatment, irrespective of outcome. https://goo.gl/G2SZDl

Reinventing palliative care: hospice in hospital

POSTGRADUATE MEDICAL JOURNAL, 2016:92(1089):426-428. Despite the success of the hospice movement,  only around a quarter of all deaths in England take place in hospices and at home. Most hospitals now have a small, specialist team of palliative care doctors and nurses, who offer guidance to other staff. However, the services they provide are limited. In theory, clinicians from other specialties should all be trained in good symptom control, but few hospitals follow the recommendation that this should be mandatory, while some offer no training at all. Realistically, hospital wards often cannot meet the needs of people who are dying, mainly because there are other patients who need attention and might recover as a result. https://goo.gl/sJP3me

Fallen Angels – Mahesh’s Story

From the eHospice newsletter

Mahesh was diagnosed with bone cancer soon after his birth and was brought to the major cities in southern India, to seek help and treatment. In these cities – Chennai, Hyderabad, Vellore and Bangalore – were established pain and palliative care centres, none were referred to Mahesh’s parents. By the end of four years, the family had racked up a huge debt from the medical treatments and had sold everything they owned.

Mahesh’s parents, together with personnel from palliative care teams from Hyderabad and Tricandrum, watched him pass away a day after his fifth birthday, hooked onto machines and in pain. A senior palliative care physician was reported feeling “ashamed” as the child was not referred to them despite being next to a hospital Mahesh was taken to.

Read the full article here.

Story about Paediatric Palliative Care shared on China television programme

Republished with permission from Butterfly Children’s Hospice, China

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Community Hero is a CCTV documentary program, which supports public welfare projects and promotes community action. As a nominee, Naomi  shared the story of Butterfly Children’s Hospices on Chinese television.  Ju Ping, a famous Chinese children’s television presenter, visited Butterfly Home with a television crew. Naomi introduced her to some of our staff and our amazing children, and spoke from her heart about the children’s needs and their great courage. Ju Ping also joined Naomi at Hunan Normal University Kindergarten fund-raising market. Naomi’s role often takes her out into the community, where she works incredibly hard fund-raising and educating.

Later Naomi led thousands of volunteers in a dance expressing hope for creative solutions to public welfare concerns.  After sharing her story, answering questions and being evaluated by judges, Naomi won the Community Hero vote, and was awarded 300000 RMB for the work of Butterfly Children’s Hospices.

We’re so thankful for all the hard work she put in to make this happen.  It’s wonderful to receive such a tremendous donation, and it was also fantastic to have a story about children’s palliative care shared on national television. Many people are not aware of the pressing need for specialist children’s palliative care, and this was an amazing way to start that conversation in homes all over the country. Thank you Naomi, and thank you to everyone from the Community Hero show!

12th Annual Paediatric Palliative Care Symposium at The Children’s Hospital at Westmead

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Sign up today!

Date

Thursday 3 March 2016

Time

8.30am – 4.20pm (Registration from 8am)

Venue

Lorimer Dods Lecture Theatre
The Children’s Hospital at Westmead
Corner Hawkesbury Road and Hainsworth Avenue, Westmead   NSW

Cost

$250 medical (non-trainees)

$180 others

Registration fee includes GST. Cancellations will incur a 20% fee.

Keynote speaker: Ulrika Kreicbergs RN, PhD

Ulrika Kreicbergs holds a professorship, funded by the Gålö Foundation, in palliative care for children and youth at Ersta Sköndal University College and is also associated with the Karolinska Institutet, Stockholm, Sweden.  Her doctoral thesis entitled “To Lose a Child To Cancer: A Nationwide Study of Parental Experiences”, at Karolinska Institutet in 2004, has been acknowledged worldwide. Dr Kreicbergs completed postdoctoral studies at the Dana Farber Cancer Institute and Boston Children’s Hospital in Boston, US, and has continued her research in paediatric palliative care. Her research is now focused on factors in health care that can be modified or avoided to reduce suffering and thereby enhance quality of life for the child and their families.

Program

8.00am – 8.30am: Registration

New Initiatives

8.30am – 8.55am: Hummingbird House, Queensland Children’s Hospice (Paul and Gabrielle Quilliam)

8.55am – 9.20am: Quality of Care Collaborative Australia (QuoCCA) for Paediatric Palliative Care Education (Anthony Herbert)

9.20am – 9.45am: Paediatric Palliative Care in Southern Tasmania (Chris Edwards)

9.45am – 10.15am: Morning Tea

Research

10.15am – 10.45am: Bereavement Research: findings from the Compass Study (Leigh Donovan)

10.45am – 11.15am: Palliative Care and the Child with Neuroblastoma (Jusveer Rakhra)

International Guest Speaker

11.15am – 12.00pm: Talking about Death with Children who have Severe Malignant Disease (Ulrika Kreicbergs)

12.00pm – 1.00pm: Lunch

Grand Rounds

1.00pm – 2.00pm: Ethics Forum (Christine Duffield, Vicki Xafis, David Isaacs, Henry Kilham)

2.00pm – 2.15pm: Brief break

2.15pm – 2.45pm: Medical Marijuana (Sharon Ryan)

2.45pm – 3.15pm: Palliative Care Nursing in the community (Therese Smeal)

3.15pm – 3.40pm: Afternoon tea

International Guest Speaker

3.40pm – 4.20pm: Risk of parental dissolution of partnership following the loss of a child to cancer: a population-based long-term follow-up (Ulrika Kreicbergs)

4.20pm: Conclusion

Facilitators

Leigh Donovan, Bereavement Coordinator / PhD Candidate; Bereavement Support Program, Paediatric Palliative Care Service; Lady Cilento Children’s Hospital, Brisbane, QLD; Kids Cancer Centre, Sydney Children’s Hospital and UNSW

Julie Duffield, Clinical Practice Consultant, Paediatric Palliative Care Service, Women’s and Children’s Hospital, Adelaide, SA

Christine Edwards, Staff Specialist Palliative Care, Royal Hobart Hospital, Tasmanian Health Service, TAS

Anthony Herbert, Director, Paediatric Palliative Care Service, Lady Cilento Children’s Hospital, South Brisbane, QLD       David Isaacs, Senior Staff Specialist, Infectious Diseases and Clinical Ethics, The Children’s Hospital at Westmead, Sydney, NSW

Henry Kilham, Senior Staff Specialist Clinical Ethics, The Children’s Hospital at Westmead, Sydney, NSW

Ulrika Kreicbergs, Professor, Palliative Care for Children and Youth,  Ersta Sköndal University College and Karolinska Institutet Stockholm, Sweden

Gabrielle Quilliam, Co-founder, Hummingbird House, Brisbane, QLD    Paul Quilliam, Co-founder, Hummingbird House, Brisbane, QLD

Jusveer Rakhra, Fellow, Paediatric Palliative Medicine, The Children’s Hospital at Westmead, Sydney, NSW

Sharon Ryan, Senior Staff Specialist, Paediatric Palliative Care, John Hunter Children’s Hospital, Newcastle, NSW

Therese Smeal, Area Nurse Coordinator, Palliative Care, Sydney South West Local Health District, Sydney, NSW

Vicki Xafis, Clinical Ethics Coordinator, The Sydney Children’s Hospitals Network, Sydney, NSW

New Zealand Guidelines go live

This article originally appeared in ehospice

Dr Emily Chang, a paediatrician with the Starship Paediatric Palliative Care Team, reports on the launch of the Clinical Guidelines for End of Life care for babies, children and young people in New Zealand. This great new resource is available to anyone and provides practical ‘on the ground’ advice.

The New Zealand paediatric palliative care community is pleased to announce the launch of their Clinical Guidelines for End of life care for babies, children and young people in New Zealand. This resource is freely available on the internet and cover a range of clinical situations. Among the topics covered are: sharing significant news, planning care, psychosocial care, palliative care emergencies, and management of pain and other distressing symptoms. They have been designed to be easily readable by general paediatric teams and provide practical “on the ground” advice.

New Zealand has one specialist paediatric palliative care team, based at the Starship Children’s hospital in Auckland. However, children with palliative care needs and their families live all through the nation, meaning their care is delivered by general paediatricians, paediatric multi-disciplinary teams and family doctors in their home towns. A survey of these healthcare professionals done in 2012 highlighted the variation in experience and expertise and a need for clinical guidelines.

Publication of the guidelines in September 2015 marks the end of a long resourcing and development process. Creating quality guidelines from scratch usually takes a large team of authors months to years. Being a small nation with limited funding and a 15 month time frame. this was not an option. A more feasible approach was to adapt existing guidelines from around the world to be used in New Zealand. After assessing the quality and suitability of each guideline, 16 were selected. These came from Australia, the United Kingdom and the United States. Once the drafts were written they were reviewed by New Zealand and clinicians and consumer representatives, before being sent onto 3 international reviewers. You can read more about the method and tools we used to develop these guidelines here:https://www.starship.org.nz/media/346085/development_methodology.pdf

In the first few weeks since their release, they have been used by teams throughout New Zealand and in Australia. Please take the time to browse through them at National Paediatric Palliative Care Clinical Guidelines | Starship If you do use them while caring for children and their families, we would love you to post some feedback which is located at the bottom of each webpage.

Participate in the Paediatric Palliative Care Survey

PPC SIGDear esteemed colleagues and fellow PPC practitioners,

After a successful service mapping exercise last year, the PPC SIG has conceived a brand new survey!

We aim to evaluate the state of drug availability for management of critical symptoms and study prevailing practice in the treatment of distressing symptoms at the end of life.

Not only would we be able to appreciate the challenges that some of our colleagues face in the course of their work as a result of limited therapeutic options, prevalent and novel methods of pharmacological interventions at the end of life will be revealed.

These important objectives can only be met if you participate, at the same time encouraging other colleagues to also do so by sharing the following link. This is where we need your support!

Ultimately, we have only one goal. As a small but growing regional group, we hope to improve the care of dying children under our care. Thank you ahead for your significant contribution.

The survey can be accessed here.

With much appreciation,

Poh Heng & Lee Ai

For the APHN PPC SIG

 

iPDF – International Paediatric Palliative Care Discussion Forum Online Now!

The Asia Pacific Hospice Palliative Care Network (APHN) launched its first paediatric palliative care initiative, the International Paediatric Palliative Care Discussion Forum, abbreviated as the iPDF, on 20 August 2015.

Conceptualized and implemented by the Paediatric Palliative Care Special Interest Group (PPC SIG) of the APHN, the iPDF will be a free resource platform for all paediatric palliative care workers to ask questions and participate in the latest discussions in children’s palliative care, anytime, anywhere online.

How it all started

Many paediatric palliative care workers in the region are working in isolation. Many cannot travel overseas for training and education. They have no one to ask if they run into trouble. Recognising the need to provide a platform that provides reliable help, is readily accessible, free and easy to use, the PPC SIG decided to fill this gap and start an online resource.

More than just a forum

The iPDF aims to become an online community for practitioners from different disciplines who work in the field of children’s palliative care, to provide networking and mutual support. In addition to being an interactive platform, the iPDF is moderated by a multidisciplinary panel of experts. Participants can be sure that their questions will be responded promptly by the relevant content specialists. Everyone can certainly look forward to many fruitful discussions with equally passionate colleagues around the globe, which has not been possible, until now.

Building capacity in a virtual environment

In conjunction with ongoing discussions, additional articles will be released every few months. These articles will include interviews with our moderators, who will share their own perspectives on the latest news and debates. Summaries of the most talked about topics, most shared answers, and further discussion on interesting projects within iPDF will be sent to participants, to keep everyone up to date on the hottest issues in the field.

Moving forward

The iPDF will continue to engage participants through activities built around this platform. We look forward to the iPDF becoming a resource for all paediatric palliative care workers, not just as a knowledge base but also a source of inspiration.

Join us!

Find out how to sign up for the forum at the APHN PPC site!

The iPDF is hosted on the Google platform. If you have a registered Google account, you may join the forum directly here.

The iPDF is an initiative by the Asia Pacific Hospice Palliative Care Network. If you will like to help contribute to the initiative or other activities in the APHN, please feel free to contact Joyce at aphn@aphn.org or +65 6235 5166.

International Paediatric Palliative Care Discussion Forum (iPDF) – Starts today!

Promotional PicDear fellow palliative care colleagues

On behalf of the Paediatric Palliative Care Special Interest Group (PPC SIG) of the Asia Pacific Hospice Palliative Care Network (APHN), we will like to invite you and your colleagues to join us as we launch our very own discussion forum focusing on children’s palliative care.

Support us by sharing this post with your friends and participate!

To join the forum, all you have to do is

1. Sign up for a Google account (if you do not have one)
2.Click on this link https://groups.google.com/forum/?hl=en#!forum/aphn_ipdf!

Our forum is moderated by an international multidisciplinary group of experts which we have gathered to help answer any questions that you may have regarding children’s palliative care.

Click here to find out more.

Paediatric Palliative Care Course in India

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Dear members and friends

Department of Palliative Medicine, Tata Memorial Centre, E Borges Road, Parel, Mumbai is organizing a Training program for doctors and nurses on Children’s Palliative Care (Paediatric Palliative Care). The total duration of the course will be 4 weeks. There would be 3 days of contact session from 1st to 3rd September 2015. The subsequent 2 weeks would be for assignments and case studies from home. The 4th week ( 21st to 25th September 2015) will be hands on training in the Department of Palliative Medicine, Tata Memorial Centre and LTMG Hospital, Sion, Mumbai. The exam will be conducted in October 2015. Tea and Lunch will be provided during 3 days of contact session.

For more information please contact Ms Melba at +91 9819826885.
Click here to download the programme schedule

Deadline for application: 16th August 2015.
Fees: Rs 2000/-.
Venue: 13th Floor, Lecture Hall, Homi Bhabha Block, Tata Memorial Centre, Parel Mumbai- 12, India
Dates to note: 1st, 2nd and 3rd September 2015
Time: 9.30 am to 4. 30 pm

ANZ Position Statement on Paediatric Palliative Care and Paediatric Palliative Care Briefing

“Paediatric palliative care aims to provide the best quality of life for neonates, infants, children and adolescents faced with life threatening conditions. Caring for young people with life limiting conditions brings specific demands and challenges. Working together to overcome misconceptions about the role of palliative care is essential to providing quality care to paediatric and adolescent patients.” ~ Palliative Care Australia

The position statement is available on Palliative Care Australia Website at www.palliativecare.org.au. APHN would like to thank our member from Australia, Dr Anthony Herbert, for providing this update to us.