Vol. 21 Issue 9
Palliative and Hospice Care
Some memories remain vivid throughout our OT experiences no matter how many years have passed. Such is my 40 year old memory of a young woman in her early twenties living in an iron lung resulting from the ravages of polio. This memory came flooding back as the tragic story of Terri Schiavo unfolded.
By association, palliative and hospice care for children and OT's purpose, function and goals became, for me, a topic of professional inquiry.
What was our profession's position on the care of patients needing palliative or hospice care? AOTA's Practice Statement on Occupational Therapy and Hospice Care, adopted by the Representative Assembly in 2004, is invaluable to practicing palliative and hospice care pediatric practitioners as well as those considering practice in palliative or hospice settings.
The position paper's purpose is to be a resource to practitioners and hospice agencies alike. Clear, concise statements present OT's role in the evaluation, intervention and outcome phases of the care continuum in hospice practice settings. A comprehensive list of references supports the practice doctrine as well as assists practitioners in further reading and research.
The National Hospice and Palliative Care Organization Demographic Survey of 2003 estimates 3,300 identified operational hospices in the United States. An estimated 950,000 patients were served by these organizations during that same year. Of that number a rough estimate of .36 percent were children.
We know, however, there are many more children in need of care out there, especially since this study was not inclusive of palliative care provided in hospitals, long term care facilities, homes and non-identified hospice centers.
AOTA's 2000 Compensation Final Report lists 1 percent of occupational therapy practitioners working in general hospital hospice settings. The latter did not report specific statistics reflecting occupational therapist practitioners working with children in palliative care settings and or identified hospice settings.
Our profession's literature and research presents strong connections between philosophies of occupational therapy and those of palliative and hospice care. Our profession's human occupation model, our humanistic, developmental and holistic approach to intervention and our domain of concern fit with principles of palliative and hospice care like children's Legos.
The Children's Hospital and Clinics of Minnesota's philosophy for their hospice patients is "to make every moment count and to enjoy it to it's fullest." That statement seems to touch a cord in pediatric occupational therapy; enriching the suffering child's days through engagement in meaningful, purposeful activity. As pediatric practitioners well know, activity engagement includes self care/ADLs, learning and play. Intervention may take the form of modification, adaptation, self care, activity exploration, sensory motor expansion, cognitive stimulation and family support all while maintaining those relationships that are important to the child through the disease process to the final stages of life.
First clinical experiences often leave the most powerful impressions on memory. How we use those impressions in combination with acquired knowledge, opportunity and our value systems may predict our responses to future similar events. The treasured memory held of the brave, remarkable young woman of forty years ago, engaging in everyday rituals, routines and cognitive/social activities presented by her occupational therapist left that powerful impression.
This overview encapsulates an arena of practice that is professionally challenging, spiritually rewarding and is in desperate need of more occupational therapists as practitioners, supportive team members and researchers. Continuing education such as the upcoming 9th Annual Interdisciplinary Approach to Symptom Control, Palliative and Hospice Care, at the University of Texas M.D. Anderson Cancer Center October 14-16 provides opportunity for pediatric therapists to enrich their scope of practice through intervention in palliative/hospice care.
Carolyn Cantu, MS, OTR, has been in the profession for 34 years and has worked in pediatrics since 1985.