(From the Spring 2013 issue of Everything Matters: In Patient Care)
Barbara Draheim, MSN, PNP-BC, APN, Palliative Care, Clinical Services & Care Coordination
Janine Penfield Winters, MD, Physician Director, Palliative Care
Jill Karnes, MS, MSW, LISW-S, Social Work Coordinator, Palliative Care, Clinical Services & Care Coordination
To the family of a child facing a life-limiting illness, everything matters. In the Palliative Care Program at Nationwide Children's, all of our families are facing a life-threatening or a life-limiting illness. The Palliative Care Program uses the tenets of family-centered care and the vision of Nationwide Children’s as we walk this journey with our families (Diagram 1). Our team helps with setting goals, advanced care planning, communication, relieving negative symptoms and supporting grief and bereavement.
Pediatric palliative care is a system and philosophy of care that focuses on providing physical, emotional, spiritual and psychosocial comfort to a child and his or her family throughout the course of a life-limiting illness. Pediatric palliative care seeks to add quality to a child’s life as opposed to solely adding days, months or years to his or her life (Diagram 2).
The Palliative Care Program at Nationwide Children's was started with a grass-roots effort. Caring staff across all disciplines recognized that families dealing with chronic, life-limiting illnesses needed another partner or support system. This level of support needed to be available in the hospital and in the community, recognizing that a child’s social structures may include school, church, organized sports teams or civic organizations. To provide this all-encompassing attention, the skill sets of multiple disciplines are required. A well-staffed palliative care team includes physicians, nurses, social workers, chaplains, child life, psychologists, massage therapy, pharmacists and families.
Nationwide Children’s offers palliative care services in all settings of a child and family’s medical experience including inpatient and outpatient visits and within their own home. The Homecare Palliative Care Program takes care of children who have a serious illness but who are in an early stage in their illness, while Homecare Hospice serves children who are within six months of the end-of-life. We serve families in Franklin County and the surrounding counties. Otherwise, we coordinate services with community-based palliative care and hospice programs.
The inpatient palliative care consult service began in 2009. This service sees patients and families in the hospital and has more recently begun to meet them in subspecialty clinics (Diagram 3). The growth in these programs has been dramatic over the past several years as referring doctors learn the value of additional support available to patients and families going through this most difficult journey (Diagram 4).
The ideal is to introduce the philosophy of palliative care at the beginning of the family’s journey with a serious illness. Families need options and a voice to advocate for their values. When the palliative care team meets with a new family, we discuss decision-making based on the benefits verses the burdens of every treatment modality offered. Burdens in this context are different than medical risks. Burdens are unique to each family’s experience and can be physical or psychosocial. Based on personal beliefs, habits, lifestyle and values, burdens can only be quantified by the child’s family.
A recent example involved a peripheral IV insertion for medically-provided hydration. The child was 6 months old with an underlying terminal diagnosis. Those of us in health care consider a peripheral IV a low-risk intervention. This IV was placed in the child’s left hand and secured with a board and tape. This child’s major source of comfort and self-soothing was sucking his left thumb. The IV was a major burden to him and to his family who had to find new but less successful ways to console his crying and irritability. Burdens are not always physical. Many are emotional, social and spiritual. The interruption of normal growth and development, the impact on siblings and extended family, challenges to church teachings and financial stressors are just a few examples to consider. We try to explore and encourage families to express their concerns so that decisions are made based on their values and unique needs.
Our team also works closely with families on setting goals for care. Most families list “cure” as their number one goal. In palliative care, we know that “cure” is not always within our control but we support families in that goal and encourage secondary goals. Secondary goals include things that we can control. Whatever the family comes up with, we try to address. For instance, this can include treating negative symptoms, facilitating last wishes, legacy building, memory making and coordinating support at home.
The Palliative Care Program is involved in several quality improvement initiatives to ensure we best serve not only our families but also the health care providers who care for these families on a consistent basis. According to a survey completed by house-staff who have consulted palliative care, they felt the palliative care team was most helpful in addressing psychosocial issues, family distress/anticipatory grief, end-of-life decision-making and pain management.
Providing palliative care requires acknowledging the interpersonal dynamics during one of the most personal of human experiences. Factors that influence this experience include culture, religion, prior experiences, social situation and existing strengths and weaknesses. General information regarding practices and beliefs offers guidance but must be tailored to individual families. An attitude of acceptance and inquiry is as important as general cultural knowledge. Each family presents us with a unique combination of beliefs, strengths and weakness. We strive to honor their beliefs, maximize their strengths and ameliorate weaknesses. Sometimes culture clashes cause conflict. For example, strict Chinese culture expects the health care provider to communicate through a family member, not directly with a patient, especially when there is a grim prognosis. American medicine mandates that a patient over the age of 18 make informed decisions about his or her own health care. The palliative care team can assist with communication during these types of conflict.
As our service continues to grow, we have many goals for this program. We are adding staff to serve more patients and families. We are also meeting patients in new settings, such as the outpatient clinics. Our bereavement program supports families for 24 months after their child passes. This program, which receives grateful praise from parents, includes newsletters, personalized birthday and anniversary cards, periodic phone contact, a memorial service and referrals to further resources such as grief groups, grief camps and counseling.
A seriously ill child creates the most stressful time in a family’s life. Palliative care will directly impact their quality of life and help to provide the best possible outcome. Our team wants families and doctors to know that there is no “right” time for a family to be ready for palliative care. All children with a serious illness should have the support of a palliative care team from the time the life-threatening or life-limiting illness is recognized.