Palliative Care
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. 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 patient’s 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.
- 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.
What is palliative care and what is the difference between this and Hospice?
https://medlineplus.gov/ency/patientinstructions/000536.htm
Caregiver Action Network
Education, support, respite care and advocacy for caregivers. Toll free information line provides referrals to caregiver support groups and a caregiver resource guide.
Caregiver Survival Resources
Provides education, support and guidance for family and professional caregivers. They produce Today’s Caregiver magazine, the first national magazine dedicated to caregivers, the "Fearless Caregiver Conferences", and a website, which includes topic-specific newsletters, online discussion lists, back issue articles of the magazine, chat rooms and an online store.
Compassionate Friends
Provides hope, comfort, and support to families experiencing the death of a child, sibling, or grandchild and helps others better assist the grieving family. Offers brochures, sibling chats, cyber friends, and pen pals to people suffering the loss of a child.
Cure Search
Website provides information and resources to help with end of life grief. Resources about end of life, recent death, and months or years after death.
National Hospice and Palliative Care Organization
NHPCO is committed to improving access to hospice and palliative care for children and their families—both nationally and internationally. Brochures for family and more.
National Institute of Nursing Research
A fact sheet, a resource card to help families find support, and a series of family stories. The materials are available in English and Spanish. NINR is part of the National Institutes of Health.
www.ninr.nih.gov/newsandinformation/conversationsmatter/conversationsmatter-patients