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Children with terminal or life-threatening conditions often require hospice or palliative care. Hospice and palliative care both focus on helping a person be comfortable by addressing issues causing physical or emotional pain or suffering. Hospice focuses on relieving symptoms and supporting patients with a life expectancy of months, not years. Palliative care concentrates on improving the quality of life for an individual with a serious illness and supporting that person and their family during and after treatment.
To help parents and caregivers, the Center for Infants and Children with Special Needs at Cincinnati Children's provides guidelines and resources.
Hospice is a philosophy of care designed to provide comfort and support to terminally ill patients and their families. The goal of hospice care is to improve the quality of life for a patient with a life expectancy of six months or less.
Hospice provides support for the emotional, social and spiritual impact of the disease on the patient and family through a team-oriented approach of specially trained professionals. Most hospices have a set of defined services, team members, rules and regulations. Some hospice programs also provide palliative care as a separate program or service, which can often be confusing to patients and families. Hospice programs generally offer counseling and bereavement services to patients and families both before and after a patient's death.
Palliative care utilizes the same principles as hospice care for patients with life-threatening conditions. To palliate means to make comfortable by treating a person's symptoms from an illness. Palliative care looks at the emotional and social issues that occur as a result of a serious illness and the effect on the family as well as the patient. Anxiety, depression and anger are common in the patient, parents and siblings. Marital stress frequently occurs and can include differences of opinion on how to manage the condition, financial strains, and lack of intimacy. Palliative care can exist with other treatment options.
Quality of life (QOL) is a palliative term (not to be confused with hospice or end-of-life care) which looks at the comfort of the patient and their family and refers to issues that cause discomfort including environmental, position, change in location, caregiver, sensory input (light, noise, smell, etc.) or discomfort / pain. Many patients with complex conditions are not able to clearly communicate what is upsetting them. While it is generally felt that "true pain" is often under treated in children, it is important to separate discomfort that can be caused by environmental issues, abnormalities involving bodily functions, or family / caregiver stress which can often be relieved or corrected without pain medications. Patients with significant brain injury often are agitated and it is challenging to the caregivers and physicians to identify physical causes before concluding that it is a behavior. A stressed caregiver may be quick to ask for pain medication when there are alternative approaches that may be of help. In addition many patients with pain develop one of these other conditions as a side effect of the pain medication. QOL approach to the family may involve counseling, respite, and/or referral to their physician.
This care focuses on enhancing quality of life for the child and family, minimizing suffering, optimizing function and providing opportunities for personal growth. Effective management of pain and other distressing symptoms, together with emotional, social and spiritual care are the core of care provided by the palliative care team. The goal is to help patients and their families live as normally as possible and to provide them with timely and accurate information and support in decision-making.
Respite care and care through death and bereavement also are components of palliative care. Such care and assistance are not limited to people thought to be dying and can be provided concurrently with curative or life-prolonging treatments.
Most patients / families receive only end-of-life services and this often means in the last 3 to 14 days. Many professionals and organizations such as Children's Hospice International and the American Academy of Pediatrics endorse the provision of palliative care from the onset of a life threatening condition, even when life-prolonging care is also being provided. While this coordination of care is ideal, many insurers and government programs will not pay for both hospice and palliative care services if they are delivered at the same time. However, Ohio Home Care Waivers are now able to cover both types of services.
Advanced Directive is a general legal term that applies to two documents known as Living Wills and Medical Powers of Attorney. These documents let an adult patient provide instructions about the type of medical care they would like to receive if they are unable to speak for themselves due to a serious illness or incapacity. A living will provides specific instructions about care, while a medical power of attorney appoints a designated person to make decisions.
The Center for Infants and Children with Special Needs at Cincinnati Children's recommends the following resources to help you locate a hospice program for your child:
Starshine Hospice Program at Cincinnati Children's is the tri-state areas only exclusive pediatric hospice and palliative care program.
Hospice of the Bluegrass
American Pain Society has information, resources and current research.
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