Challenging Us to See the Whole Person at All Stages of Life
|Kathy Greenlee, ||VP for Aging and Health Policy|
The Center for Practical Bioethics hosted the Joan Berkeley symposium on Thursday, April 6. The title for the day was “Paths to Person-Centered Planning.” In planning the event, my objective was to focus on tools and techniques grounded in a disability policy perspective that could benefit healthcare professionals and bioethicists. The day brought articulate and engaged speakers, raised new questions, introduced different language, and ultimately affirmed the strength of a multi-disciplinary approach to supporting people and their families as they face serious illness and end of life.
Four distinct concepts emerged:
1) the perspective of the person as patient,
2) similarities and differences between shared decision-making and supported decision-making,
3) the balance between what is “important to” a person and “important for” a person, and
4) the need to see a patient within the context of their family, however defined.
The panelists who opened the day demonstrated the importance of listening to people and the first speaker stole the show.
Cathy Enfield, member of Self-Advocates Becoming Empowered (SABE), is an articulate adult woman with a developmental disability. She uses an iPad for communication assistance. She gave a first-person account of having healthcare providers look past her and talk directly to her caregiver.
To communicate, Cathy needs support. Yet, public policies ranging from transportation to healthcare create barriers and financial disincentives that require her to be accompanied by someone to assist. Cathy’s comments were so compelling one of the medical educators in the audience intends to make them required reading for his first-year medical students.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.