The Online Newsletter for Children's Nurses
e-Edition, Issue 7
Family Centered Medical CareBy Susan Willoughby, RN, CHPN - Palliative Care Coordinator
Before the turn of the 20th century, the death of a child occurred at home with the family caring for the child. The family doctor would visit when needed, and friends and neighbors provided food and support for the grieving family. Death, although very sad, was considered a fact of life.
With advances in medical technology, death is no longer considered a fact of life. Instead, the death of a child is thought by some to be a failure – even though approximately 55,000 children die each year in the United States.1 The circumstances surrounding a child’s death are quite different today. It often comes after months of chemotherapy and radiation or following multiple surgeries, and it often occurs in the pediatric intensive care unit – very different than the picture in the 20th century.
Today, from the time of diagnosis, the family with a child who has a life-threatening illness often feels trapped in a whirlwind of treatments, decisions and confusion. They feel everything is out of control, but are expected to make tough decisions. Do they want treatments toward cure even when cure is not possible? Do they want artificial feeding and breathing? What about surgery? Do they want more opinions? Do they want “everything” done? The family is bombarded with information from every direction at the worst time of their lives. Is it any wonder that families are unable to make decisions? This is the time when families need what I think of as FAMILY-CENTERED MEDICAL CARE, a combination of pediatric palliative care and family-centered care.
Both are based on, and in fact share, the same principles. According to the Institute for Patient- and Family-Centered Care, the principles for family-centered care include:2
- Respect and dignity: Health care practitioners listen to and honor patient and family perspectives and choices. Patient and family knowledge, values, beliefs and cultural backgrounds are incorporated into the planning and delivery of care.
- Information Sharing: Health care practitioners communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. Patients and families receive timely, complete, and accurate information in order to effectively participate in care and decision-making.
- Participation: Patients and families are encouraged and supported in participating in care and decision-making at the level they choose.
- Collaboration: Patients and families are also included on an institution-wide basis. Health care leaders collaborate with patients and families in policy and program development, implementation, and evaluation; in health care facility design; and in professional education, as well as in the delivery of care.
According to the National Hospice and Palliative Care Organization the principles of pediatric palliative care include:3
- Pediatric Expertise: Care is focused on the intersection between providing excellence in pediatric care and palliative care, serving children, inclusive of fetuses, infants, children, and adolescents, diagnosed with a life-threatening condition and their family members, from the point of diagnosis through bereavement.
- Family Centered: Includes the child and family as one unit of care, respecting individual preferences, values, and cultural beliefs. This includes decision-making regarding the goals and plan of care.
- Enhances Quality of Life: Strives to enhance quality of life for the child and family, as only they can determine it to be. Minimizes sources of distress and suffering. Creates opportunities for personal growth and sharing in the essential experiences of life, family, and childhood within the constraints of a life-threatening condition.
- Delivered by an Interdisciplinary Team: Child and family are integral members of the team. Members of disciplines providing care have skills, experience, and educational training to ensure high quality pediatric palliative care and to facilitate coordination and continuity of care, in whatever setting is desirable and/or appropriate to meet the needs of the child and family.
By following the principles of family-centered care and palliative care we can ensure that every family facing the death of a child will be considered the unit of care and treated with respect and dignity. They will receive accurate, consistent and complete information about their child’s condition and options for care. They will be supported by all members of the health care team while they seek to make difficult decisions. Their decision will be respected and supported because we know they made the decision best for their family. The child’s quality of life will be enhanced when symptoms are treated quickly and consistently. The family will be encouraged to practice their cultural and/or religious rituals and the child’s death will occur at the location of the family’s choosing. All families will receive professional bereavement care following the death of a child. That is our goal for every family who must face the death of a child.
Institute of Medicine Report When Children Die: Improving Palliative and End-of-Life Care for children and their Families. (National Academy Press, 2003).
National Hospice and Palliative Care Organization, Alexandria, Virginia; CHIPPS NEWSLETTER 2003
In This Issue
A Walk On The Family Side
Patient Family Satisfaction
Family-Centered Medical Care
Nursing and Child Life
Pediatric Diabetes Care
Supporting Teens on Dialysis