Costing Framework Development Project Purpose

The purpose of this project was to create a Life Care Planning Costing Framework to guide life care planners with cost research and decision-making, while acknowledging that the Costing Framework is not prescriptive or designed as “one-size-fits-all” for all situations. Costing research requires flexibility and clinical judgment. Each costing research technique is suited to different situations. With this acknowledgement, the following goals, development processes, tasks, and principles were identified for this project:

  1. Identify variables to be considered in cost decisions

    a. Recognize circumstances when the variables are relevant

    b. Distinguish the pros/cons (considerations) of using or not using the variables

  2. Define terms used in the Costing Framework

  3. Provide guidance for life care plan costing research

Costing Framework Development Project Charge

Guidance to identify the purpose and directive for the Costing Framework project was based on the 2017 summit attendees’ consensus (Albee et al., 2018, pp. 208–9):

Life care planners shall develop a position statement (white paper) regarding the presentation of charges and/or costs presented in the life care plan that provides guidance to life care planners for the variety of uses and jurisdictional requirements encountered by life care planners.

The paper:

a. Must take into consideration that “associated costs” are referenced in the definition of a life care plan.

b. Ensure the current geographically relevant monetary charges for a good and service are in the life care plan.

Costing Framework Development Committee guidelines were developed by the committee co-chairs, Dana Penilton and Laura Woodard, to launch the project before the committee’s first meeting, which was held on November 15, 2022.

Costing Framework Development Project General Principles

The co-chairs defined a set of general principles to guide the process. The Costing Framework is a set of general guidelines for life care planning practitioners to consult while allowing for individual judgment and continued evolution in the field. It was determined that the final document would be objective and free of personal agendas. The Costing Framework would not require 100% consensus within the working group but a majority agreement was required for inclusion. If the working group could not reach sufficient agreement about a topic or issue, then that topic or issue would not be included in the Costing Framework. During the review and revision process, no specific commitments or promises were made regarding a timeline for completion. The priority was quality, usefulness, and comprehensiveness, rather than rushing to publish. Committee work was to be accomplished in a safe environment allowing all members to express opinions and share information openly.

Launching the Costing Framework Development Project

A call for volunteers was sent to life care planning associations, including the International Association of Rehabilitation Professionals (IARP), the American Association of Nurse Life Care Planners (AANLCP), and the American Academy of Physician Life Care Planners (AAPLCP) on July 18, 2022, which closed on October 7, 2022. The American Academy of Physician Life Care Planners leadership declined to participate in this project. Thirty-five people were selected for the working group and 21 were chosen to be on the advisory committee. The 2022 Summit Planning Committee members, including Cloie Johnson, Susan Grisham, Dr. Elizabeth Davis, Kirsten Thomas, Dana Penilton, Laura Woodard, Carol Fricks, Evelyn Robert, Reg Gibbs and Jamie Pomeranz, were invited to serve on either the working group or the advisory committee. The volunteers for the Costing Framework Development Project represented a diversity of primary professional disciplines, geographic area of practice, years of experience, and credentials.

The working group agreed individuals serving on a life care planning certification board (i.e., ICHCC, Universal Life Care Planner Certification Board, and Canadian Vocational Rehabilitation Professionals) would be recused from serving on the Costing Framework Development Committee to avoid potential conflicts of interest. The role of certifying bodies is to measure certification criteria and it could be perceived as a conflict of interest for members serving on a life care planning certification board to control entry into the field and to develop practice guidelines (K. Preston, personal communication, September 20, 2022).

Costing Framework Work Product Development Process

The co-chairs determined that the process would be objective and thorough. The co-chairs committed to providing status updates to the life care planning community throughout the process, to be accomplished by educational presentations and webinars. The co-chairs acknowledged that the working group might identify additional steps to ensure we addressed the scope we were assigned by the 2022 Summit Planning Committee.

Costing Framework Working Group Tasks

The co-chairs defined the working group tasks. These included completing a literature review, identifying and defining relevant terms and definitions pertaining to costing research, and acknowledging influences that may impact life care planning costing research. Additionally, the working group would review and analyze the 2021 Costing Technique Survey qualitative data and the 2022 Summit results to identify themes that describe costing techniques and practices that contribute to the development of a Costing Framework. Upon completion of tasks by the working group, a draft of the Costing Framework would be provided to the advisory committee for review. The working group would then discuss recommendations from the advisory committee, document its decisions, and finalize the Costing Framework to publish and disseminate.

Costing Framework Advisory Committee Tasks

The co-chairs developed the advisory committee tasks. These included contributing documents to the literature review, reviewing the Costing Framework draft, and making recommendations for working group reconsideration. As necessary, the co-chairs would consult with members of the advisory committee for guidance.

Co-Chair Tasks

The tasks of the co-chairs would include scheduling meetings, monitoring the progress of work, and keeping detailed records. The co-chairs would also delegate tasks to the working group and the advisory committee and participate in working group and advisory committee meetings. As the working group defined additional objectives and tasks to be accomplished, the co-chairs would develop subcommittees as needed. The co-chairs agreed to communicate with the life care planning community on project progress to include presentations at conferences and webinars.

Progression of Process

At the first meeting, working group and advisory committee members were present. They were asked to upload literature, research, and publications concerning costing, costing definitions, costing methodology, costing challenges, jurisdictional issues impacting costing, etc. A committee library was created to upload costing resources and committee documentation.

On January 27, 2023, during the working group committee meeting, the committee co-chairs created three subcommittees to review data from the 2022 Summit. These subcommittees were the 2021 Costing Technique Survey Subcommittee, the Top Hat Data Subcommittee, and the Summit Notes and Summit Recording Subcommittee.

The 2021 Costing Technique Survey Subcommittee was led by co-chairs Lynn Pahl and Lisa Busby Thomas. Subcommittee members included Lisa Anderson, Katherine Dunlap, Reg Gibbs, Jocelyn Holt, and Jody Masterson. The subcommittee was tasked with analyzing qualitative data from write-in responses to the 2021 Costing Technique Survey (see Chapter 6).

The Top Hat Data Subcommittee co-chairs were Jenn Craigmyle and Erin OConnell and subcommittee members were Rebecca Bailey, Lisa Gay, Dana Penilton and Laura Woodard. This subcommittee was tasked with analyzing data from the focus groups at the 2022 Summit. The data were derived from the answers to questions posed to participants on the Top Hat platform (see Chapter 7).

The Summit Notes and Summit Recording Subcommittee’s chair was Sarah Malloy with subcommittee members Carol Fricks, Liz Kattman, and Caroline Williams. This subcommittee was tasked with analyzing qualitative data captured from the 2022 summit discussions by an audio recording and notetakers (See Chapter 8).

As the work of the Costing Framework Development Committee progressed, the need for additional subcommittees became apparent. The Costing Matrix Subcommittee was formed in February 2023 to classify costing sources into categories. The subcommittee co-chairs were Reg Gibbs and Rebecca Busch with subcommittee members Mariann F. Cosby, Ann Maniha, Dana Penilton, Lisa Busby Thomas, Laura Woodard and Elizabeth Zaras. This subcommittee was tasked with describing the history, identification of uses, and considerations related to each costing category.

In April 2023, a subcommittee was formed to begin developing methods and protocols for reviewing resources pertinent to life care plan costing. The titles of the materials saved to the library were entered into a spreadsheet, along with the author(s) and citation in APA 7th format. Peer-reviewed articles were then distinguished from other types of sources to be included in the literature review. The Literature Review Methods and Protocols Subcommittee was renamed the Literature Review Subcommittee with Caroline Williams serving as the chairperson and Michele Albers, Lisa Anderson, Mariann F. Cosby, Becky Czarnik, Carol Fricks, Ann Maniha, Erin OConnell, Dana Penilton, Lisa Busby Thomas, and Laura Woodard comprising the subcommittee.

The final subcommittee formed was the Definitions Subcommittee with co-chairs Becky Czarnik and Rebecca Busch and subcommittee members Deborah Watkins, Laura Woodard and Dana Penilton. This subcommittee was tasked with defining and compiling relevant terms and corresponding definitions identified through the work of the other subcommittees.

The working group agreed that data analysis by the subcommittees would be presented in independent chapters following standard research publication format, including Introduction, Methodology, Results, Discussion/Limitations of Study and References.

The committee co-chairs and other working group committee members disseminated information and reported on progress of the project at the 2023 LCP Connect meeting, the 2023 and 2024 IARP Fall Forum/IALCP Symposium, the 2024 AANLCP webinar, and the 2025 IARP Fall Forum and feedback was solicited from attendees to incorporate into the Costing Framework publication.

Conclusion

In reviewing surveys of the life care planning community, it became apparent that additional guidance was desired regarding costing research methodology. This provided the impetus for the 2021 Costing Technique Survey and the 2022 Summit, which then led to the determination that a Costing Framework was needed to guide life care planners in conducting cost research. The Costing Framework is not intended to be a prescribed step-by-step costing research methodology but rather a tool to synthesize available costing data, educate users, and enhance individual clinical judgment when determining which costing techniques are appropriate in each situation.

The following chapters will include a review of peer-reviewed articles and other sources relevant to life care plan costing. A reprint of the quantitative analysis of the 2021 Costing Technique Survey will be included. Qualitative analysis of the data from the 2021 Costing Survey, Top Hat responses to questions presented at the 2022 Summit, and Summit discussions will be presented and a costing matrix will be introduced which describes four types of cost sources, their histories, and considerations for use of each source. Definitions of terms related to costing and provision of categorized resources to further assist life care planners as they define and defend their costing methodology will be included.