Discussion: View Thread

Colleagues,

Agreeing with recent posts, we encourage participation in the upcoming life care planning Summit in Minneapolis using the traditional nominal group technique (see: https://www.rand.org/content/dam/rand/pubs/notes/2007/N3367.pdf) applied in past Summits. Summits encourage a robust and healthy conversation among life care planners. 

We want to recognize the tremendous work involved in taking on the organization of the life care planning Consensus & Majority Statements over nearly a year. The Statements were developed through consensus and participation of varied groups within life care planning over the past 25 years and updated through a Delphi process published in 2018 that allowed all voices and participation from the field. The Statements represent broad-based and historic tenets of life care planning.

This public post comes from a group of current and retired professionals who created and lead Summits, were involved with revisions of the Standards of Practice, and authored historic or contemporary publications and research in life care planning.

When the survey for the current Summit was disseminated, we immediately raised the following concerns with leadership, some of which have been publicly expressed already:

1.    Survey Design and Dissemination Issues: 

·      Each item on the survey lacks information (i.e., inter-rater reliability statistics) for respondents to understand the level of agreement among workgroup members about a recommended action (e.g., removal). This vital procedure avoids within-group bias.

·      The survey offers no opportunities at the item or survey level to comment regarding the item, group of items, or the survey itself.

·      Forced-choice responses assume an a priori decision to which respondents must agree instead of seeking input from the field as to potential action needed on each item.

·      The survey's length creates significant respondent burden, leading to abandoned and incomplete survey responses, which erodes data quality, trustworthiness, and reliance.

·      We are aware that several life care planners have now completed the survey twice due to multiple calls and the announcement that the survey had changed. This impacts data quality and provides a false sense of the number of life care planners in agreement or disagreement.

2.    Survey Purpose -- Because not all the Statements are the same, they should not all require the same forced-choice response. 

a)        Some Statements are foundational to the development and update of the Standards of Practice or other documents or research. 

b)        Some Statements are enforceable ethical rules in life care planning that may or may not exist in individual codes of ethics from various disciplines. 

c)        Some Statements are aspirational and unenforceable but affirm what it means to enter into life care planning and be a life care planner. 

d)        Some Statements are best practice methodologies.

e)        Some Statements might fall into other categories. 

Þ   Cross-Validated Statements: Because a Statement exists in the Standards of Practice or another authoritative document creates a desirable "redundancy" for cross-validation and internal validity within life care planning. We recommended recognizing these cross-validated Statements (~50%), not eliminating them. This cross-validation strengthens the field.

Þ   Residual Statements: For the remaining ~50% of Statements not part of the cross-validation, deciding their type helps determine the best way to reconcile decisions about them. Revisiting these Statements is worthwhile, but each item or group might require a different approach.

Summit attendees must have transparent and good quality data that is fair, equitable, and as unbiased as possible when deciding about a Statement. Poor data quality and incomplete responses could detrimentally affect the workgroup and Summit participants' efforts. It can create a highly biased dataset from a survey that seeks to dramatically change a document developed by so many life care planning groups over a long period and which serves as a bedrock of life care planning practice. 

We have reached out to the Summit leadership several times about these concerns. Despite our attempts, the survey continues unaltered in content and timeline.  We do not believe that stating that the survey is "not research" sufficiently defends against the above threats to the data's integrity. Thus, we felt it necessary to be transparent with the life care planning community about our collective concerns.

The outcome of the survey should not be used as a stimulus to guide the conversation at the Summit, but any update should rely on a nominal group or Delphi technique that allows for every voice for and against to be heard and consensus to be reached.

Mary Barros-Bailey, PhD

Tim Field, PhD

Chris Reid, PhD

Tanya Rutherford-Owen, PhD

Roger Weed, PhD

Colleagues,

Agreeing with recent posts, we encourage participation in the upcoming life care planning Summit in Minneapolis using the traditional nominal group technique (see: https://www.rand.org/content/dam/rand/pubs/notes/2007/N3367.pdf) applied in past Summits. Summits encourage a robust and healthy conversation among life care planners. 

We want to recognize the tremendous work involved in taking on the organization of the life care planning Consensus & Majority Statements over nearly a year. The Statements were developed through consensus and participation of varied groups within life care planning over the past 25 years and updated through a Delphi process published in 2018 that allowed all voices and participation from the field. The Statements represent broad-based and historic tenets of life care planning.

This public post comes from a group of current and retired professionals who created and lead Summits, were involved with revisions of the Standards of Practice, and authored historic or contemporary publications and research in life care planning.

When the survey for the current Summit was disseminated, we immediately raised the following concerns with leadership, some of which have been publicly expressed already:

1.    Survey Design and Dissemination Issues: 

·      Each item on the survey lacks information (i.e., inter-rater reliability statistics) for respondents to understand the level of agreement among workgroup members about a recommended action (e.g., removal). This vital procedure avoids within-group bias.

·      The survey offers no opportunities at the item or survey level to comment regarding the item, group of items, or the survey itself.

·      Forced-choice responses assume an a priori decision to which respondents must agree instead of seeking input from the field as to potential action needed on each item.

·      The survey's length creates significant respondent burden, leading to abandoned and incomplete survey responses, which erodes data quality, trustworthiness, and reliance.

·      We are aware that several life care planners have now completed the survey twice due to multiple calls and the announcement that the survey had changed. This impacts data quality and provides a false sense of the number of life care planners in agreement or disagreement.

2.    Survey Purpose -- Because not all the Statements are the same, they should not all require the same forced-choice response. 

a)        Some Statements are foundational to the development and update of the Standards of Practice or other documents or research. 

b)        Some Statements are enforceable ethical rules in life care planning that may or may not exist in individual codes of ethics from various disciplines. 

c)        Some Statements are aspirational and unenforceable but affirm what it means to enter into life care planning and be a life care planner. 

d)        Some Statements are best practice methodologies.

e)        Some Statements might fall into other categories. 

Þ   Cross-Validated Statements: Because a Statement exists in the Standards of Practice or another authoritative document creates a desirable "redundancy" for cross-validation and internal validity within life care planning. We recommended recognizing these cross-validated Statements (~50%), not eliminating them. This cross-validation strengthens the field.

Þ   Residual Statements: For the remaining ~50% of Statements not part of the cross-validation, deciding their type helps determine the best way to reconcile decisions about them. Revisiting these Statements is worthwhile, but each item or group might require a different approach.

Summit attendees must have transparent and good quality data that is fair, equitable, and as unbiased as possible when deciding about a Statement. Poor data quality and incomplete responses could detrimentally affect the workgroup and Summit participants' efforts. It can create a highly biased dataset from a survey that seeks to dramatically change a document developed by so many life care planning groups over a long period and which serves as a bedrock of life care planning practice. 

We have reached out to the Summit leadership several times about these concerns. Despite our attempts, the survey continues unaltered in content and timeline.  We do not believe that stating that the survey is "not research" sufficiently defends against the above threats to the data's integrity. Thus, we felt it necessary to be transparent with the life care planning community about our collective concerns.

The outcome of the survey should not be used as a stimulus to guide the conversation at the Summit, but any update should rely on a nominal group or Delphi technique that allows for every voice for and against to be heard and consensus to be reached.

Mary Barros-Bailey, PhD

Tim Field, PhD

Chris Reid, PhD

Tanya Rutherford-Owen, PhD

Roger Weed, PhD

Colleagues,

Agreeing with recent posts, we encourage participation in the upcoming life care planning Summit in Minneapolis using the traditional nominal group technique (see: https://www.rand.org/content/dam/rand/pubs/notes/2007/N3367.pdf) applied in past Summits. Summits encourage a robust and healthy conversation among life care planners. 

We want to recognize the tremendous work involved in taking on the organization of the life care planning Consensus & Majority Statements over nearly a year. The Statements were developed through consensus and participation of varied groups within life care planning over the past 25 years and updated through a Delphi process published in 2018 that allowed all voices and participation from the field. The Statements represent broad-based and historic tenets of life care planning.

This public post comes from a group of current and retired professionals who created and lead Summits, were involved with revisions of the Standards of Practice, and authored historic or contemporary publications and research in life care planning.

When the survey for the current Summit was disseminated, we immediately raised the following concerns with leadership, some of which have been publicly expressed already:

1.    Survey Design and Dissemination Issues: 

·      Each item on the survey lacks information (i.e., inter-rater reliability statistics) for respondents to understand the level of agreement among workgroup members about a recommended action (e.g., removal). This vital procedure avoids within-group bias.

·      The survey offers no opportunities at the item or survey level to comment regarding the item, group of items, or the survey itself.

·      Forced-choice responses assume an a priori decision to which respondents must agree instead of seeking input from the field as to potential action needed on each item.

·      The survey's length creates significant respondent burden, leading to abandoned and incomplete survey responses, which erodes data quality, trustworthiness, and reliance.

·      We are aware that several life care planners have now completed the survey twice due to multiple calls and the announcement that the survey had changed. This impacts data quality and provides a false sense of the number of life care planners in agreement or disagreement.

2.    Survey Purpose -- Because not all the Statements are the same, they should not all require the same forced-choice response. 

a)        Some Statements are foundational to the development and update of the Standards of Practice or other documents or research. 

b)        Some Statements are enforceable ethical rules in life care planning that may or may not exist in individual codes of ethics from various disciplines. 

c)        Some Statements are aspirational and unenforceable but affirm what it means to enter into life care planning and be a life care planner. 

d)        Some Statements are best practice methodologies.

e)        Some Statements might fall into other categories. 

Þ   Cross-Validated Statements: Because a Statement exists in the Standards of Practice or another authoritative document creates a desirable "redundancy" for cross-validation and internal validity within life care planning. We recommended recognizing these cross-validated Statements (~50%), not eliminating them. This cross-validation strengthens the field.

Þ   Residual Statements: For the remaining ~50% of Statements not part of the cross-validation, deciding their type helps determine the best way to reconcile decisions about them. Revisiting these Statements is worthwhile, but each item or group might require a different approach.

Summit attendees must have transparent and good quality data that is fair, equitable, and as unbiased as possible when deciding about a Statement. Poor data quality and incomplete responses could detrimentally affect the workgroup and Summit participants' efforts. It can create a highly biased dataset from a survey that seeks to dramatically change a document developed by so many life care planning groups over a long period and which serves as a bedrock of life care planning practice. 

We have reached out to the Summit leadership several times about these concerns. Despite our attempts, the survey continues unaltered in content and timeline.  We do not believe that stating that the survey is "not research" sufficiently defends against the above threats to the data's integrity. Thus, we felt it necessary to be transparent with the life care planning community about our collective concerns.

The outcome of the survey should not be used as a stimulus to guide the conversation at the Summit, but any update should rely on a nominal group or Delphi technique that allows for every voice for and against to be heard and consensus to be reached.

Mary Barros-Bailey, PhD

Tim Field, PhD

Chris Reid, PhD

Tanya Rutherford-Owen, PhD

Roger Weed, PhD

Colleagues,

Agreeing with recent posts, we encourage participation in the upcoming life care planning Summit in Minneapolis using the traditional nominal group technique (see: https://www.rand.org/content/dam/rand/pubs/notes/2007/N3367.pdf) applied in past Summits. Summits encourage a robust and healthy conversation among life care planners. 

We want to recognize the tremendous work involved in taking on the organization of the life care planning Consensus & Majority Statements over nearly a year. The Statements were developed through consensus and participation of varied groups within life care planning over the past 25 years and updated through a Delphi process published in 2018 that allowed all voices and participation from the field. The Statements represent broad-based and historic tenets of life care planning.

This public post comes from a group of current and retired professionals who created and lead Summits, were involved with revisions of the Standards of Practice, and authored historic or contemporary publications and research in life care planning.

When the survey for the current Summit was disseminated, we immediately raised the following concerns with leadership, some of which have been publicly expressed already:

1.    Survey Design and Dissemination Issues: 

·      Each item on the survey lacks information (i.e., inter-rater reliability statistics) for respondents to understand the level of agreement among workgroup members about a recommended action (e.g., removal). This vital procedure avoids within-group bias.

·      The survey offers no opportunities at the item or survey level to comment regarding the item, group of items, or the survey itself.

·      Forced-choice responses assume an a priori decision to which respondents must agree instead of seeking input from the field as to potential action needed on each item.

·      The survey's length creates significant respondent burden, leading to abandoned and incomplete survey responses, which erodes data quality, trustworthiness, and reliance.

·      We are aware that several life care planners have now completed the survey twice due to multiple calls and the announcement that the survey had changed. This impacts data quality and provides a false sense of the number of life care planners in agreement or disagreement.

2.    Survey Purpose -- Because not all the Statements are the same, they should not all require the same forced-choice response. 

a)        Some Statements are foundational to the development and update of the Standards of Practice or other documents or research. 

b)        Some Statements are enforceable ethical rules in life care planning that may or may not exist in individual codes of ethics from various disciplines. 

c)        Some Statements are aspirational and unenforceable but affirm what it means to enter into life care planning and be a life care planner. 

d)        Some Statements are best practice methodologies.

e)        Some Statements might fall into other categories. 

Þ   Cross-Validated Statements: Because a Statement exists in the Standards of Practice or another authoritative document creates a desirable "redundancy" for cross-validation and internal validity within life care planning. We recommended recognizing these cross-validated Statements (~50%), not eliminating them. This cross-validation strengthens the field.

Þ   Residual Statements: For the remaining ~50% of Statements not part of the cross-validation, deciding their type helps determine the best way to reconcile decisions about them. Revisiting these Statements is worthwhile, but each item or group might require a different approach.

Summit attendees must have transparent and good quality data that is fair, equitable, and as unbiased as possible when deciding about a Statement. Poor data quality and incomplete responses could detrimentally affect the workgroup and Summit participants' efforts. It can create a highly biased dataset from a survey that seeks to dramatically change a document developed by so many life care planning groups over a long period and which serves as a bedrock of life care planning practice. 

We have reached out to the Summit leadership several times about these concerns. Despite our attempts, the survey continues unaltered in content and timeline.  We do not believe that stating that the survey is "not research" sufficiently defends against the above threats to the data's integrity. Thus, we felt it necessary to be transparent with the life care planning community about our collective concerns.

The outcome of the survey should not be used as a stimulus to guide the conversation at the Summit, but any update should rely on a nominal group or Delphi technique that allows for every voice for and against to be heard and consensus to be reached.

Mary Barros-Bailey, PhD

Tim Field, PhD

Chris Reid, PhD

Tanya Rutherford-Owen, PhD

Roger Weed, PhD