When conducting costing research for a life care plan, it is essential to understand the primary goals of life care planning are to maximize an individual’s functional status following an injury or disability, prevent secondary complications, and promote overall quality of life. Life care plans are needs-based documents, derived from clinical evidence and functional assessment of the evaluee, rather than from limitations imposed by specific payors, insurance benefits, or collateral payment sources (Deutsch & Reid, 2004). A fundamental component of the life care planning process is the systematic determination of costs for the products and services recommended to address the evaluee’s identified medical, functional, and support needs.

At the 2022 Life Care Planning Summit, life care planners identified the need for a Costing Framework to clarify the variables and methods used in the costing process, along with the strengths and considerations when using those methods (Johnson et al., 2023). In response, a Costing Framework is presented in this chapter.

As described in Chapter 1, life care planners are guided by established Standards of Practice (International Academy of Life Care Planners [IALCP], 2022; American Association of Nurse Life Care Planners [AANLCP], 2015; American Academy of Physician Life Care Planners [AAPLCP], 2025) as well as Consensus and Majority Statements developed through biennial life care planning summits (Johnson et al., 2018, 2025) to ensure consistent, valid, and reliable approaches to obtaining life care plan costs. The Costing Framework is built upon this foundation as well as data regarding costing techniques gathered through the 2021 Costing Technique Survey (conducted as a precursor to the 2022 Life Care Planning Summit) and data obtained at the 2022 Summit. A consensus project defining primary cost sources, accompanied by an educational graphic, was presented in Chapter 4, and analysis of the data was provided in Chapters 5, 6, 7, and 8. This framework project offers a conceptual structure of common themes, costing techniques, and key considerations intended to support the life care planning cost research process. To further assist life care planners, a review of costing related resources was presented in Chapter 3. This information has also been integrated into the Costing Framework.

Guided by their education, training, and experience, life care planners apply clinical judgment (Choppa et al., 2004) that requires flexibility, as cost research methods may vary across situations. The Costing Framework was not designed to be prescriptive, but rather to serve as a tool that synthesizes data to identify commonly used costing techniques to provide education and guidance to life care planners. The goals of this project included identifying variables to be considered in cost-related decisions; recognizing circumstances in which variables are relevant; identifying common costing techniques; discussing considerations including strengths and challenges associated with various costing techniques; defining key terms; providing guidance for life care planning cost decisions; and assisting life care planners in supporting and defending their costing related decisions when utilizing various costing techniques.

Methodology

Following the 2022 Summit, committee co-chairs were selected to guide the Costing Framework Development Project. From July 18 to October 7, 2022, a call for volunteers was distributed via email to three life care planning associations, IALCP, AANLCP, and AAPLCP, for dissemination among their members. Leadership within AAPLCP declined participation in this project.

The Costing Framework Development Committee was initially formed with 55 volunteers, although due to attrition over time, 39 volunteers remained active throughout the project. Twenty-four volunteers served on the working group and 17 served on the advisory committee, including the two co-chairs, who served on both the working group and the advisory committee. Volunteers represented a diverse range of geographic locations, professional background, levels of experience, and professional credentials. Additional details regarding the development of the Costing Framework Development Committee and its processes are provided in Chapter 2.

The 2021 Costing Technique Survey Subcommittee, Top Hat Data Subcommittee, and Summit Notes and Summit Recording Subcommittee analyzed their respective data and identified common themes, costing techniques, and considerations associated with the use of various costing techniques. The findings are reported in Chapters 6, 7, and 8, and were considered, alongside the published quantitative analysis presented in Johnson et al. (2023), as reported in Chapter 5.

In Chapter 6, themes were synthesized and organized into six categories: standards of practice (SOP)/consensus statements; practice management; aggregated data; individual research; learning techniques; and problems encountered. Standards of practice and consensus statements refer to published guidelines that encourage life care planners to use data that are reliable, valid, and geographically representative. Practice management reflects the clinical judgment and individualized approaches life care planners use to research and document costs, often incorporating multiple costing sources. Aggregated data refers to cost information synthesized and compiled from multiple sources, where individual research refers to cost information obtained independently and not derived from aggregated sources. Learning techniques encompass the various methods life care planners use to develop and refine cost research skills. Problems encountered refers to considerations or challenges reported when using costing techniques. Responses identified as problems encountered (challenges) in Chapter 6 were later synthesized along with challenges reported in Chapters 5 and 7 to create a summary of challenges to be considered (See Table 3). Therefore, problems encountered, identified in Chapter 6, did not remain as a separate thematic category for this overall project.

Five thematic categories are represented in the Costing Framework to reflect current life care planning costing practices. Examples of reported strengths associated with these practices are also incorporated. The framework preserves the autonomy of the life care planner and ensures that practitioners retain discretion to select the costing processes and methodologies they determine to be most appropriate in support of their expert opinions.

Results

Four types of cost sources are detailed below, followed by considerations of strengths and challenges associated with the use of aggregated data and individual research costing techniques. Results illustrating the five thematic categories represented in the Costing Framework are also provided.

The Costing Matrix Subcommittee identified four types of costing sources, as represented in Table 1. Life care planners use clinical judgment to select the types of data chosen in the development of each life care plan, and more than one data source may be used. The Costing Matrix shown in Figure 1 was developed to organize these sources into four distinct quadrants and serve as an educational tool to explain the four costing sources.

Table 1.Four Types of Costing Sources in Life Care Planning
Costing Source Characteristics
Aggregated Data Source data that has been processed, compiled, or converted into formatted reports, summaries, or retrieval tools
Individual Research Non-aggregated data that may involve direct outreach using telephone calls, emails, and letters
Costing technique for medical and non-medical items and services
Source Data Raw data collected from claims forms submitted by healthcare providers
Specialized Research Extension of individual research
Not specific to a client or evaluee, relies on published information to provide foundational support
Addresses cutting-edge or policy-driven costing needs
Includes cost-effectiveness studies reporting treatment costs, health economics research, research reports, clinical trials
Useful when rare or uncommon services or products are needed
Supports the inclusion of emerging technologies and customized care strategies
Use applicable laws and/or policies
Figure 1
Figure 1.Costing Matrix

Note: See Chapter 4 for additional information regarding these four types of costing data.

The following tables summarize reported considerations as strengths and challenges that may influence life care planners’ individual costing research choices. This summary is based on responses presented from Chapters 5, 6, and 7 to provide considerations to assist life care planners in making informed decisions about costing techniques across varied situations. Life care planners use various databases; however, participants’ responses may not apply to all databases. Refer to Chapters 5, 6, and 7 for more detailed information.

Table 2.Considerations: Strengths Reported in Chapters 5, 6, and 7
Costing Source Strengths
Aggregated Data: Paid Databases Verifiability
Updated regularly
May facilitate triangulation of data
Large sample size
Non-discounted data
Assists with review of opposing expert’s costs
Geographically specific
User Friendly
Reliable
Valid
Citable
Defensible
Consistent
Reproducible
Published methodology
Reputable sources
Utilized when other methods do not provide costs
UCR
Support and documentation
Transparent descriptions and data
Accepted within the life care planning community
Aggregated Data: Free Databases Accurate
Provides up to date costs
Easy to use
Geographically specific
Some have a range of pricing from different vendors
Ability to obtain costs when other techniques are not available
Accessible
Considered acceptable for use by the life care planning community
Document retail (non-discounted) costs
Data integrity (verifiable, valid, reliable and accurate)
Enables life care planner to obtain detailed service specific costs
Useful for cost comparison
Individual Research Can obtain multiple sources
Have option to use a range to represent costs
Use non-discounted costs
Can perform web searches or online pricing
Easily accessible
Retail costs
Good source of codes such as CPT® and HCPCS codes
Email provides paper documentation
Uses combination/multiple techniques based on evaluee’s needs
Costs are presented in a variety of ways such as an average or a range
Geographically specific
Gives insight/understanding of the local area
Sometimes calls are the only way to obtain costs
Helpful to get local bid for larger modifications
Verifies data from other sources/databases
Actual cost of equipment such as a specific wheelchair
Identify provider charges
Common tasks in clinical practice for professionals such as rehab counselors, case managers, and nurses
Data integrity (verifiable, valid, reliable, & accurate)
Enables life care planner to obtain detailed service specific costs
Current and up to date costs
Individual Research: Medical Bills Good source for codes
Actual provider charges
Obtain additional information such as service location, geographic information, billing office, DME charges, dates of service, service patterns, and paid amounts
Facilitates triangulation of current data
Verifiable information
Evaluee specific including provider and specialty

Note. Additional information can be found in Chapters 5, 6, and 7.

Table 3.Considerations: Challenges Reported in Chapters 5, 6, and 7
Costing Source Challenges
Aggregated Data: Paid Databases Differentiation by provider specialties is not reflected in databases
May not include all types of services, such as home modifications, lawn care, and home and vehicle maintenance
May be complex and difficult to use
May be time consuming depending on database
Published data may contain older costs depending on publication date (e.g., textbooks)
Making contact with some database representatives
USA based sources are not applicable to Canada
Use of medical coding
Subscription cost
Some databases may not have geographic adjustment for local regions
Percentile utilization
Not specific to the evaluee and their treating provider(s)
Aggregated Data: Free Databases Some costs may be discounted or use coupons that cannot be guaranteed to be available throughout a person’s lifetime
Prescription databases use major pharmacies, which may not always be found in every geographic area
Not every cost can be found in a database
May receive unwanted solicitation after requesting initial information
Sometimes evaluee’s personal identifying information is requested
User knowledge, learning curve, and usability
Costs may be state or national and not local
Individual Research Reluctancy to disclose costs
Providers may not share all the codes for services billed
Difficulty getting responses from inquiries after leaving messages
Varied costs for the same service
Chargemaster not available at all hospitals
Some vendor responses are not timely
Some providers indicate they do not take private pay
Limited transparency from some vendors
Difficulty obtaining anesthesia costs
Sometimes hospitals give information specific to insurance coverage or cash (discounted)
Difficulty obtaining costs unless the evaluee is the patient, or the doctor has ordered the service
May need to call multiple times
Not all costs may be provided such as facility fee
Sometimes not all associated codes are provided regarding a procedure such as levels in surgery, hardware, and grafts
Sometimes it is difficult to obtain certain costs like home care costs or costs of home modifications
Billing offices provide contracted rates and discounts from different carriers
Different terms, such as private pay, self-pay, or cash price, may be used during inquiries for costs; may need clarification about non-discounted costs
Sometimes the cost reported could be general and not specific to the evaluee
Small sampling
May be time consuming
Challenges occur sometimes due to jurisdictional requirements
Persistent marketing efforts from vendors at times
Individual Research: Medical Bills May be outdated data based on dates of services on medical bills
May have limited or unclear information
Can be difficult to read, interpret, or obtain
Coding issues or bundling concerns
May not reflect UCR especially if discounted

Note. Additional information can be found in Chapters 5, 6, and 7.

Thematic Findings

During the development of this project, identified themes were synthesized and organized into five categories: standards of practice (SOP)/consensus and majority statements; practice management; aggregated data; individual research; and learning. The five categories were incorporated in the Costing Framework to reflect current life care planning costing practices. Tables 4 through 7 present a synthesis of data from the 2021 Costing Technique Survey quantitative results, 2021 Costing Technique Survey qualitative results, 2022 Summit Top Hat qualitative results, and 2022 Summit discussions, with findings grouped according to these five categories.

Table 4.Themes of 2021 Costing Technique Survey Quantitative Results
Themes
Aggregated Data
62% used a database to determine costs
56% used PMIC Medical Fees
55% used Fair Health paid subscription
48% used American Hospital Directory paid subscription
31% consult with three databases, free & subscription, for cost information when writing a LCP
The top three most used percentiles used by life care planners who used databases for costs were 75th (43%), 80th (22%) and 50th (11%)
Individual Research
77% considered telephone calls to specific providers & vendors to be a valid method of determining costs of services and products in a specific geographic area
72% considered email correspondence with specific providers a valid method of determining the cost of service in a specific geographical area
42% obtained fees and prices by telephone
Learning
44% learned how to cost for services and products through a formal training program
and the remaining learned on the job, from a mentor or other non-formal training
Practice Management
93% of life care planners identified the sources of the costs in their plans
85% used CPT codes when researching medical, surgical, or diagnostic procedure codes
81% used a combination of sources to determine costs
64% did not rely on Medicare fee schedules to determine costs
53% used the term “charge” when requesting information via telephone calls, emails, and letters to providers to determine costs for medical services
51% of life care planners considered prices less than 12 months old to be valid
44% used a range to represent costs of specific services and products when they did not use a database
41% used the terms “non discounted” or “private pay” when requesting information via telephone calls, emails, and letters to providers to determine costs for medical services
40% used the term “self-pay” when requesting information via telephone calls, emails, and letters to providers to determine costs for medical services
Standards of Practice (SOP) / Consensus Majority Statements
59% generally obtained three cost sources for a specific service or product recommended in a LCP when they did not use a database
Table 5.Themes of 2021 Costing Technique Survey Qualitative Results
Themes
Aggregated Data
42% used a paid subscription to a database or paid to download to determine costs.
Individual Research
23% reported using fee information shared during telephone calls to providers as a source of costs
16% reported using individual research techniques when not using databases to present costs of specific services and products
12% indicated individual research techniques when identifying use of free sources
Learning
48% reported learning how to research costs for services and products recommended in life care plans through a formal training program, on the job, from a mentor or other non-formal training
Practice Management
58% responded using practice management skills and clinical judgment in answering Q55 such as how current prices need to be used to be considered valid. Examples of responses included less than 2 to 3 years, within the last 12 to 18 months, and most recently purchased cost data.
43% demonstrated practice management when using fee information shared during telephone calls
37% indicated practice management skills and use of clinical judgment when asked which percentile was used to represent costs when using a database
35% used decision making to include choosing various methods when costing
35% reported practice management skills and clinical judgement when asked what was used instead of a database to present costs of specific services and products
35% used practice management when they chose which collateral sources of funding were used to determine costs
33% reported practice management skills and clinical judgment when choosing particular databases.
32% indicated practice management skills and clinical judgment when reporting free sources of cost information
Standards of Practice (SOP)/Consensus Majority Statements
37% reported using SOP/consensus statements when presenting costs not using a database
31% indicated SOP/consensus statements when learning how to research costs for services and products recommended in a life care plan
31% demonstrated SOP/consensus statements when answering the reason as to why a particular database was chosen
31% revealed SOP/consensus statements when defining associated costs
29% indicated SOP/consensus statements when reporting free sources of cost information

Note. Responses identified as problems encountered or challenges during the qualitative analysis presented in Chapter 6 are represented in Table 3. See Chapter 6 for additional information.

Table 6.Themes of 2022 Summit Top Hat Data
Themes
Aggregated Data
66% reported reliability and reproducibility of data as strengths when using paid databases
40% indicated larger sample size as a strength when using paid databases
36% reported convenient, accessible, and efficient as strengths when using paid databases.
43% reported free or open access databases to be reproducible and verifiable
Individual Research
54% reported use of medical bills and coding as a strength
53% reported telephone calls as a strength when obtaining detailed service specific costs
51% indicated actual provider charges as a strength when using medical bills for costing
33% reported data integrity during telephone calls
32% demonstrated localized and geographically specific costs during telephone calls
Learning
Learning curve to use databases
Knowing how to enter the right data to get cost needed in a database
Use of databases requires proficiency in medical coding
Practice Management
Life care plan documentation of research for each item, including item or service, vendor called, name of contact, cost quoted, date of research, name of researcher, geographic location
Printed surgical estimates received from treaters
Do updated research and pricing
Prefer to use existing bills of providers
Percentile selection and use of clinical judgment
Standards of Practice (SOP) / Consensus Majority Statements
DRG groups and the data repositories are statistically reliable
Reliability and reproducibility of data
Accepted within the life care planning community
Evaluee specific

Note: Table 6 reflects participants’ responses as direct quotes in addition to themes

Table 7.Themes of 2022 Summit Discussions
Themes
Aggregated Data
All databases are based on billed charges.
There are multiple valid techniques for determining costs including paid databases and free databases
Individual Research
There are multiple valid techniques for determining costs including telephone calls, emails, internet websites, past bills, and on-site visits
Learning
The role life care planning programs have in supporting consistency in and knowledge of costing techniques
Practice Management
Acknowledgement that life care planners must be aware of how legal decisions affect cost determination techniques
The sources of costs presented in the life care plan should be, and typically are, included in the plan
Life care planners consider the age of the data and geographical and social nuances to evaluate their inclusion for use
The percentile chosen to define usual, customary and reasonable (UCR) costs is variable and can be defended by the individual life care planner
There are multiple valid techniques for determining costs
Some costing techniques are more appropriate for particular categories of a life care plan than for others
Usually a combination of costing techniques/multiple techniques are used by each life care planner based on the applicable categories and individual characteristics of the evaluee
Costs are presented in a variety of ways – mean, range, etc.
Life care planners must be prepared to defend the use of any costing technique used.
Standards of Practice (SOP)/Consensus Majority Statements
There is a need for each costing methodology to be followed in a consistent way
Life care plans are based on objective and consistent methodology interwoven with individual critical thinking.

Costing Framework

The Costing Framework presented in Figure 2 illustrates two commonly reported costing techniques used by life care planners and the five thematic categories that assist in the life care plan costing process. Further, it includes examples of considerations regarding strengths and challenges associated with each technique, derived from analysis of the data in Chapters 5, 6, 7, and 8.

Figure 2
Figure 2.Costing Framework

The Costing Framework diagram presented in Figure 2 illustrates how standards of practice, consensus and majority statements, and practice management (use of clinical judgment) interrelate when performing cost research for life care plans. Published standards of practice and consensus and majority statements serve as foundational, top-tier documents, from which practice management flows, representing the individualized approaches life care planners use to research and document costs. Life care planners use the foundational documents as guidance and rely on clinical judgment informed by their education, training, and experience (learning) along with a review of relevant resources and references, to select costing technique(s) appropriate to the items and services required to meet an evaluee’s needs within a life care plan.

Figure 2 represents two costing techniques, aggregated data and individual research, and highlights key considerations associated with the use of each approach. The considerations are defined as strengths and challenges related to the application of these techniques. Additional information regarding strengths and challenges is provided in Chapters 5, 6, and 7 and summarized in Tables 2 and 3.

The Costing Framework, as illustrated in Figure 2, may be used by life care planners to help select the appropriate techniques and sources for each item in a life care plan. Information has been provided in Chapter 1 to help life care planners determine whether a given technique or source is consistent with standards of practice and consensus statements. Clinical judgement is then applied to costing in each situation. This may include application of jurisdictional requirements impacting the work product. Considerations revealed in the data may further assist in the selection of appropriate techniques and sources, i.e. selection of a database that provides costs that are geographically specific and current, or selection of individual costing sources for specialized items in a life care plan.

Discussion

The purpose of this project was to create a Costing Framework to educate and guide life care planners regarding costing techniques currently used in the life care planning community. Since the first Life Care Planning Summit in 2000, costing has been an ongoing and evolving topic among life care planners, with 2017 Summit participants requesting more costing guidance through the development of a framework (Johnson et al., 2023). No such framework was created until this project was initiated in 2022. Through a review of foundational life care planning documents and relevant publications related to costing research as well as synthesis of results from the 2021 Costing Technique Survey and the 2022 Summit, the Costing Framework presented in this chapter was developed.

During the synthesis of findings, five consistent themes emerged from the survey and summit data: aggregated data, individual research, learning, practice management, and standards of practice / consensus and majority statements. Life care planners commonly reported the use of aggregated data and individual research costing techniques as reliable and reproducible, in alignment with established standards within the life care planning community.

In addition to following published guidelines, life care planners reported learning how to cost services and products through formal training programs, on-the-job experience, mentorship, or other non-formal training. Also, guidelines and learning techniques influenced life care planners’ development of practice management skills, including the application of individual clinical judgment and objectivity while using consistent methodologies to obtain costs according to jurisdictional requirements that may impact the work product. Examples of practice management were reported when life care planners selected specific percentiles, databases, codes, customary and reasonable (UCR), and geographically represented costs. Ninety-three percent of respondents reported identifying cost sources within their plans, while 85% reported using codes when researching medical, surgical, and diagnostic procedures. Furthermore, the majority of life care planners reported using multiple valid techniques to determine costs, with results expressed in various formats such as averages or ranges.

Two costing techniques, aggregated data and individual research, were reported as valid and reliable methods for obtaining geographically specific costs. Sixty-two percent of respondents reported using databases that contain synthesized data compiled from multiple sources and a larger sample. A majority also identified direct inquiries and individual research methods, such as telephone calls (77%) and email correspondence (72%) with specific providers and vendors, as valid approaches for determining costs in a specific geographic area. Aggregated data were also reported as accessible through books and software products. When using aggregated data, life care planners reported relying on paid subscription databases, fee-based data downloads, and free databases to determine costs. In addition to direct inquiries, individual research methods included review of medical bills, fee schedules, internet websites, and facility chargemasters. The use of these two costing techniques is consistent with prior life care planning research, including Neulicht et al. (2022), who reported that life care planners contacted local vendors (64%) and used national databases with geographic adjustment (59%).

Furthermore, the Costing Framework presents considerations related to the use of different costing techniques. Commonly reported strengths associated with aggregated data included validity, reliability, geographic specificity, consistency, statistical rigor, accessibility, and the availability of large data sets. Strengths associated with the individual research included the ability to obtain evaluee-specific costs, access costs that may not be available through other methods and differentiate among providers and specialties. Costs obtained through individual research were reported to be verifiable, valid, reliable, accurate, and geographically specific.

Challenges associated with the use of these costing techniques were also reported. When using aggregated data, some types of costs were reported to be unavailable, and the data was reported as not being specific to treating providers. Also, life care planners indicated that aggregated data may lack differentiation by provider specialty, and there may be a user learning curve. Challenges related to individual research included the time-intensive nature of the process and the potential of varied costs for the same service. Life care planners also reported difficulty obtaining information at times when conducting individual research and a smaller sample size.

Limitations

The Costing Framework is based on a 2021 Costing Technique Survey as well as 2022 Summit Top Hat responses and discussions data. Therefore, findings reflect experiences of participants who responded to the survey and/or participated in the 2022 Summit. While the number of respondents and representative demographics provide a meaningful sampling of the life care planning community, additional research with a larger sample of life care planners may further strengthen and expand these findings. Data were collected in 2021-2022, reflecting costing methods commonly used during that timeframe.

Conclusion

The Costing Framework Development Committee achieved their primary goal of developing a Costing Framework to support life care planners in defining and defending their costing methodologies within their individual practice settings. This goal was accomplished through the collaborative efforts of the Costing Framework working group and advisory committee. The framework is intended to be flexible, allowing life care planners to exercise clinical judgment in their cost research decisions. In addition to the material presented in this chapter, variables to be considered in cost-related decisions as well as circumstances in which those variables are relevant are addressed in Chapters 4, 5, 6, 7, and 8.

Costing remains a central issue in life care planning, and further research is recommended to address costs associated with emerging health interventions, specialized services, and the methods available to access and determine how to apply source data in life care plan costing. This Costing Framework is intended to evolve as the practice of life care planning advances. For example, price transparency federal rules and chargemasters were first initiated in 2021, but these topics were not reflected in the 2021 costing survey questions and were not a focus at the 2022 Summit because use of chargemasters and price transparency lists was limited at that time. Future research regarding use of chargemasters and price transparency lists in life care plan costing is recommended.

Additionally, research has also been suggested regarding sampling methodologies when conducting direct cost inquiries. Maniha and Watson (2019) proposed the use of the Area Cost Analysis Form as a structured data-gathering tool and Barros-Bailey et al. (2022) introduced an Attendant Care Survey Methodology (ACSM) to collect attendant care costs. However, further research is encouraged to identify more data-gathering tools for costing purposes. Findings from Chapter 7 indicate a need for additional education regarding percentiles obtained from multiple databases, which is beyond the scope of this project. A detailed discussion of percentile usage and interpretation was provided by Mertes and Reid (2024). Furthermore, investigation of costing techniques used by life care planners outside of the United States would contribute to the advancement of life care planning practice globally.