What is Palliative Care?
The Need for PPC
It is estimated that 6.3 million children who die annually need pediatric palliative care (PPC) and that only about 10% of them receive the attention they need because about 98% of them live in under-resourced settings where PPC is not accessible. MedPal–CNN hopes to spread awareness and educate medical doctors, other healthcare professionals, and students about PPC.
Learn more about PPC from this article.
Pediatric Palliative Care Definition and Benefits
World Health Organization of Definition of Palliative Care:
“Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness through the prevention and relief of suffering by means of early identification, impeccable assessment, and treatment of pain and other physical, psychosocial and spiritual problems. Palliative care:
- provides relief from pain and other distressing symptoms;
- affirms life and regards dying as a normal process;
- intends neither to hasten or postpone death;
- integrates the psychological and spiritual aspects of patient care;
- offers a support system to help patients live as actively as possible until death;
- offers a support system to help the family cope during the patients’ illness and in their own bereavement;
- uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
- will enhance quality of life, and may also positively influence the course of illness;
- is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.”
Adapted with permission, from WHO Definition of Palliative Care, https://www.who.int/cancer/palliative/definition/en/ accessed on Jan 23, 2019.
WHO Definition of Palliative Care for Children:
“Palliative care for children represents a special, albeit closely related field to adult palliative care. WHO’s definition of palliative care appropriate for children and their families is as follows; the principles apply to other pediatric chronic disorders (WHO; 1998a):
- Palliative care for children is the active total care of the child’s body, mind and spirit, and also involves giving support to the family.
- It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease.
- Health providers must evaluate and alleviate a child’s physical, psychological, and social distress.
- Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited.
- It can be provided in tertiary care facilities, in community health centers and even in children’s homes.”
Adapted with permission, from WHO Definition of Palliative Care, https://www.who.int/cancer/palliative/definition/en/ accessed on Jan 23, 2019.
PPC Myths vs. Facts
| Myth | Fact |
| Palliative care is only for patients with terminal illnesses. | Palliative care is an essential component of end-of-life care; however, palliative and curative care are not mutually exclusive. Palliative care is not synonymous with hospice and is an important part of care for a range of patients, including many seriously ill patients who may be able to make a complete recovery. |
| Palliative care is equivalent to giving up hope. | One of palliative care’s goals is to redirect and cultivate realistic hope by respecting patient wishes and helping patients and families to live the best quality of life possible for as long as possible. |
| Patients must choose between palliative care or curative care; they cannot receive both. | Palliative care and curative care are in no way mutually exclusive treatment plans; rather, PC is often complementary of curative care and life-extending treatments. |
| Palliative care hastens death. | A number of studies show that palliative care helps improve patients’ quality of life, better supports patient and familial outcomes, and may even extend some patients’ lives. |
| Palliative care is a luxury for patients in high resource settings and it is not as important in contexts with fewer resources. | Palliative care is a human right. It can help make care more effective and cost-efficient and can help maximize scarce medical resources in any setting. |
| Check out the welcome section of our app for more palliative care facts! |
Who can benefit from Pediatric Palliative Care?
To determine which patients may benefit from PPC, refer to the Four groups of life-limiting and life-threatening conditions by Together for Short Lives below. These categories were developed by Together for Short Lives, a leading UK charity for children with life-threatening and life-limiting conditions.
Four groups of life-limiting and life-threatening conditions by Together for Short Lives
| Category 1 | Life-threatening conditions for which curative treatment may be feasible but can fail, where access to palliative care services may be necessary when treatment fails, irrespective of the duration of that threat to life. On reaching long-term remission or following successful curative treatment there is no longer a need for palliative care services. Examples: cancer, organ failures of heart, liver, kidney, transplant and children on long-term ventilation. |
| Category 2 | Conditions where premature death is inevitable, these may involve long periods of intensive disease-directed treatment aimed at prolonging life and allowing participation in normal activities. Children and young people in this category may be significantly disabled but have long periods of relatively good health. Examples: cystic fibrosis, Duchenne muscular dystrophy and SMA Type 1. |
| Category 3 | Progressive conditions without curative treatment options, where treatment is exclusively palliative and may commonly extend over many years. Examples: Batten disease, mucopolysaccharidoses and other severe metabolic conditions. |
| Category 4 | Irreversible but non-progressive conditions causing severe disabilityleading to susceptibility to health complications and likelihood of premature death.Palliative care may be required at any stage and there may be unpredictable and periodic episodes of care. Examples: severe cerebral palsy, complex disabilities such as following brain or spinal cord injury. |
Used with permission from the creators of this content, Together for Short Lives (UK). To see the categories in in A Guide to Children’s Palliative Care(2018), follow this link.
A Guide to Children’s Palliative Care (4th edition), 2018 is published in English, and translation into Spanish language has been granted, however Together for Short Lives cannot take responsibility for the accuracy of the translation and any errors made in the translation or meaning.
A Guide to Children’s Palliative Care (Fourth Edition) is published by Together for Short Lives, England.
First published in 1997
Second edition published in 2003
Third edition published in 2009
ISBN: 1 898447 39 X
© Together for Short Lives, 2018
Author/Autora: Lizzie Chambers
Editor/Editora: Dr Ann Goldman