Statement in the Worldwide Palliative Care Community following a dying of Charlie Gard

This statement is disseminated through the Worldwide Children’s Palliative Care Network (ICPCN) with the worldwide palliative care community symbolized through the Worldwide Hospice and Palliative Care Alliance (WHPCA) and also the Worldwide Association of Hospice and Palliative Care (IAHPC). It’s based on United kingdom children’s palliative care charitable organization, Together for brief Lives.

We’ve been deeply moved through the situation of Charlie Gard and the family and our ideas and condolences are together following his dying, and all sorts of individuals involved, including all the dedicated health care professionals who’ve looked after him at Great Ormond Street Hospital (Jeeze) and much more lately in the hospice. This case has highlighted the necessity not just for awareness about palliative take care of children, but the early integration of palliative care within the take care of all kids with existence restricting and existence threatening conditions. Indeed, the planet Health Set up resolution on palliative care (2014) emphasises the significance of making certain that palliative care can be obtained to any or all individuals in need of assistance, and throughout the path of their illness and really should get offers for alongside treatment targeted at cure. Children’s palliative care is definitely an active and total method of care provided from the purpose of diagnosis. It embraces physical, social, spiritual and mental needs and concentrates on enhancing the caliber of existence for that child or youthful person and supporting their loved ones. Thus it’s a total method of care, from the purpose of diagnosis, through the child’s illness, dying and into death. Palliative care is existence affirming and never about quitting, but about making certain that the  child might have the highest quality of existence inside the realities of the condition. Children’s palliative care, includes discomfort and symptom management, comfort care and support for that child and all sorts of family

You will find over 21 million children worldwide who require use of palliative care, with a minimum of 8 million requiring specialist care1, yet under 10% of kids all over the world have access to such care. Within the U.K. you will find 49,000 babies, children and youthful people between and 19 who’ve a existence- restricting or existence-threatening condition i.e. one child in each and every 270. Palliative care is supplied in a variety of settings including hospital, hospices and residential, based on what’s suitable for the kid as well as their family. Within the U.K. you will find 54 children’s hospice services, together with hospital and community palliative care teams, including a great palliative care team within Jeeze itself.

Palliative care services can offer support to families throughout the path of the child’s care, supporting them through difficult decisions, including those of withdrawing existence- sustaining treatment for example artificial ventilation. Honest and open communication between families and professionals taking care of the kid ought to be in the centre of reaching decisions around withdrawing existence-sustaining treatment and considering finish of existence care choices. They are decisions that no parent is fine with having to create the youngster, and it’s important to understand that withdrawing such treatment methods are not about abandoning care but ongoing care, comfort, discomfort and symptom management or support for your loved ones.

The worldwide palliative care community is dedicated to the continuing growth and development of palliative take care of children as well as their families, to ensure that all children who require palliative care will get access to it, no matter their condition or their current address on the planet. The existence of Charlie and the family members have turned on feelings all over the world and our hearts visit his parents and family only at that tragic and sad time.

1 Connor SR, Downing J, Marston J. (2017) Estimating the worldwide requirement for palliative take care of children: A mix-sectional analysis. Journal of Discomfort and Symptom Management. 53(2):171-177. Doi: 10.1016/j.jpainsymman.2016.08.020

Concerning the Worldwide Children’s Palliative Care Network
The Worldwide Children’s Palliative Care Network (ICPCN) (world wide is really a global network of organisations and people working in the area of hospice and palliative take care of children. Our vision would be to achieve worldwide the highest quality of existence and take care of children and youthful individuals with existence restricting illnesses, their own families and careers, through communication, networking, advocacy, research, education and support and development. ICPCN represents the worldwide voice of children’s palliative care.

To learn more
For information from ICPCN please contact:
Prof Julia Downing
Leader, ICPCN
[email protected]

For details about children’s hospice and palliative care within the U.K. please contact:
Myra Manley
Director of Communications, Together for brief Lives
[email protected] kingdom
0117 910 2469
07775 336460

Rob Walsh
Director of Exterior Relations
[email protected] kingdom

Based on
This statement has additionally been based on Together for brief Lives (world wide kingdom) within the U.K. combined with the following regional palliative care organisations:

Download the statement: ICPCN Statement following dying of Charlie Gard

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