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End-of-life planning with People Planning Ahead guide helps one person voice her fear of dying in a nursing home
Interview: Dawn Rudolph - Program Manager, AUCDPerson-centered planning with People Planning Ahead: Communicating Healthcare and End-of-Life Wishes helps one person voice her fear of dying in a nursing home and another person reconnect with a lost sibling, says Dawn Rudolph, talking about her experiencing implementing this planning guide as a former residential services director. People Planning Ahead by Leigh Ann Kingsbury was recently published by AAIDD and is available for review at http://bookstore.aaidd.org.
AAIDD: In what capacity did you implement People Planning Ahead?Dawn Rudolph: At the time I used People Planning Ahead, I was working as the director of a residential services division, providing supports to approximately 90 individuals with developmental disabilities in a wide range of individual and group home settings. I completed the planning myself with teams, and also trained and supervised others to do so after completing a “Train the Trainer” curriculum for end-of-life planning. I implemented People Planning Ahead with the core teams of elderly individuals with developmental disabilities (over age 60) in their homes. I also trained a small number of skilled supervisors in the residential department to implement People Planning Ahead.
AAIDD: How has working with People Planning Ahead benefited you as a professional and the people you have worked with?
Dawn Rudolph: Well first, the manual was easy to follow, as well as easy to individualize according to the preferences, personal circumstances, and needs of the person supported. While working with People Planning Ahead, I realized that the more practice I had in implementing person-centered planning skills and techniques, the more proficient I became with my work. People Planning Ahead is quite comprehensive, so it was a key opportunity to strengthen my person-centered philosophy of service, which extends far beyond the immediate projects of implementing People Planning Ahead. The train-the-trainer opportunity also allowed me to teach others, which has (as always) provided me with an additional means of building expertise with the topic.
The people I implemented People Planning Ahead with were able to better communicate their preferences for daily life to their family, staff, and other supports. They were able to identify healthcare power of attorneys, and in one situation, I was able to rekindle lost communication with a sibling, and had the opportunity to learn what happens in the aging and illness process. The people I supported had often attended funeral services of families or friends who passed away, but were never involved in planning the details. This was an opportunity for people to get involved directly, to learn the details of this stage of life planning, and to have more control over their lives.
AAIDD: Can you talk a bit more about these noteworthy experiences?
Dawn Rudolph: Sure. In one particular situation, we were able to help one person voice her true fear of dying in a hospital or nursing home, and her desperate desire to stay at home. After growing up in an institution, she was quite clear that she did not want to die in one, but had previously never told anyone because the subject hadn’t been raised. This was incorporated in her advance directives, and she felt much more comfortable knowing that the “promises” that we made during the People Planning Ahead process became legally binding. In another situation, conversations about family histories and traditions led us to locate a long-lost sibling of the woman supported, who willingly became closely involved in her life again.
AAIDD: That is indeed wonderful. Let me ask you a bit about the principles of Essential Lifestyle Planning that People Planning Ahead is based on. Can you talk a bit about it?
Dawn Rudolph: Sure. The incorporation of Essential Lifestyle Planning in People Planning Ahead goes far in ensuring that the person’s end-of-life planning, and personal daily preferences and wishes, is not overtaken by medical concerns. It also provides concrete tools to assist a team in identifying and working through disparate points of view, desires, expectations, and wishes that may (and often do) exist among team members, or between team members and the person they are supporting.
AAIDD: What would you say to families and professionals considering the use of People Planning Ahead?
Dawn Rudolph: I’d say that People Planning Ahead is an excellent guide to assist individuals, families, and team members through some very difficult, but critically important discussions, in a manner that addresses the medical, legal, and personal aspects of end-of-life planning.
Dawn Rudolph is currently Program Manager with The Association on University Centers on Disabilities (AUCD). Dawn was involved in working with author Leigh Ann Kingsbury in developing the initial manual that led to this book.