Journal of Gerontological Nursing

Feature Article Supplemental Data

Partnership to Enhance Resident Outcomes for Community Living Center Residents With Dementia: Description of the Protocol and Preliminary Findings

Joan Carpenter, PhD, CRNP, ACHPN; Susan C. Miller, PhD; Ann M. Kolanowski, PhD, RN, FAAN; Michele J. Karel, PhD, ABPP; Vyjeyanthi S. Periyakoil, MD; Jill Lowery, PsyD; Cari Levy, MD, PhD; Anne E. Sales, PhD, RN; Mary Ersek, PhD, RN


The goal of this quality improvement project is to improve care planning around preferences for life-sustaining treatments (LST) and daily care to promote quality of life, autonomy, and safety for U.S. Department of Veterans Affairs (VA) Community Living Center (CLC) (i.e., nursing home) residents with dementia. The care planning process occurs through partnerships between staff and family surrogate decision makers. This process is separate from but supports implementation of the LST Decision Initiative—developed by the VA National Center for Ethics in Health Care—which seeks to increase the number, quality, and documentation of goals of care conversations (GOCC) with Veterans who have life-limiting illnesses. The current authors will engage four to six VA CLCs in the Mid-Atlantic states, provide teams with audit and feedback reports, and establish learning collaboratives to address implementation concerns and support action planning. The expected outcomes are an increase in CLC residents with dementia who have documented GOCC and LST plans. [Journal of Gerontological Nursing, 45(3), 21–30.]


The goal of this quality improvement project is to improve care planning around preferences for life-sustaining treatments (LST) and daily care to promote quality of life, autonomy, and safety for U.S. Department of Veterans Affairs (VA) Community Living Center (CLC) (i.e., nursing home) residents with dementia. The care planning process occurs through partnerships between staff and family surrogate decision makers. This process is separate from but supports implementation of the LST Decision Initiative—developed by the VA National Center for Ethics in Health Care—which seeks to increase the number, quality, and documentation of goals of care conversations (GOCC) with Veterans who have life-limiting illnesses. The current authors will engage four to six VA CLCs in the Mid-Atlantic states, provide teams with audit and feedback reports, and establish learning collaboratives to address implementation concerns and support action planning. The expected outcomes are an increase in CLC residents with dementia who have documented GOCC and LST plans. [Journal of Gerontological Nursing, 45(3), 21–30.]

Dementia is a progressive life-limiting illness characterized by a decline in executive function, memory, language, and decision-making ability that affects the capacity to perform activities of daily living. Individuals with advanced dementia are often cared for in institutional settings (Harris-Kojetin et al., 2016), and approximately 70% of dementia-related deaths occur in nursing homes (NHs) (Karlin, Visnic, McGee, & Teri, 2014). Therefore, efforts to ensure high-quality NH care must address the special needs of residents with dementia.

The U.S. Department of Veterans Affairs (VA) owns and operates 133 NHs called Community Living Centers (CLCs); one third of CLC residents have a dementia diagnosis. The VA is committed to person-centered care (PCC) for all its residents, including those with dementia, and in 2008, it adopted guidelines for implementing cultural transformation in CLCs (Lemke, 2012). Cultural transformation seeks to shift NHs from impersonal institutions to home-like environments that provide PCC (Koren, 2010; Lemke, 2012).

PCC is an approach that places value on the unique qualities, interests, and needs of individuals (American Geriatrics Society Expert Panel on Person-Centered Care, 2016). Examples of this approach include providing meaningful choices about preferences such as what to wear, when and what to eat, and what activities residents like to participate in (Koren, 2010). PCC has been shown to positively impact residents' well-being, including decreasing behavioral symptoms and reducing psychotropic medication use in dementia (Li & Porock, 2014). Although experts agree that personal choices should be honored, there is also recognition that some resident preferences carry risks, such as when a resident with difficulty swallowing chooses to eat foods that are not part of the modified diet. In these cases, clinicians may be reluctant to honor these choices out of concern for the resident's health, fear of litigation, or fear of being cited by inspectors for negligent care (Behrens et al., 2018; Calkins, Schoeneman, Brush, & Mayer, 2015; Engel, Kiely, & Mitchell, 2006).

Delivering PCC to individuals with dementia is particularly challenging because of their progressive inability to make decisions and communicate many of their preferences. Thus, families and health care teams must collaborate to make care decisions that consider residents' personal values, clinical situations, and best interests. In some cases, relationships between families and NH staff may become strained due to mismatched expectations, unresolved conflicts, and ineffective communication, thereby creating a significant barrier to appropriate, high-quality care (Ersek, Kraybill, & Hansberry, 2000; Givens, Selby, Goldfeld, & Mitchell, 2012; Utley-Smith et al., 2009). In addition, family decision makers report inadequate support and limited communication from staff when making care decisions, which can intensify existing conflict and tension between family and staff (Givens, Kiely, Carey, & Mitchell, 2009).

An important aspect of PCC is to honor choices about medical therapies and, in particular, decisions about life-sustaining treatments (LST) at the end of life. Ideally, these decisions should be based on ongoing discussions among NH residents, families, and interdisciplinary team members and be documented in the care plan (Institute of Medicine, 2015). In 2017, the VA updated its policy guidance regarding eliciting, documenting, and honoring seriously ill Veterans' goals of care and LST decisions. This program, called the Life-Sustaining Treatment Decisions Initiative (LSTDI), includes two key practice standards: (a) practitioners are required to initiate pro-active goals of care conversations (GOCC) with seriously ill Veterans (or the Veteran's surrogate if the Veteran lacks decision-making capacity) prior to writing LST orders, and (b) practitioners are required to document these conversations and decisions using the national standardized Veteran's Health Administration LST progress note template and order set. Importantly, LST orders are durable—they are accessible and actionable when the Veteran crosses care settings within the VA and remain in effect until they are modified based on a change in the Veteran's goals of care and LST plan (access (VA, 2017; Foglia, Lowery, Sharpe, Tompkins, & Fox, 2019). The LSTDI focuses on all Veterans with serious, life-limiting illness; the current authors' project supports Veterans with dementia living in VA–owned and operated CLCs. This article describes the protocol, including goals and methods for this project, and provides a brief description of early implementation efforts.

Project Overview and Aims

Given the challenges in determining care preferences for CLC residents with dementia, the principles of PCC and the LSTDI were combined to design a clinical innovation centered on building partnerships between CLC staff and family surrogate decision makers to enhance care planning and LST decision making. This project, Partnership to Enhance Resident Outcomes: Collaborative Care Plans for CLC Residents with Dementia (Partnership Program) is part of a 5-year quality improvement and implementation program entitled, Implementing Goals of Care Conversations with Veterans in VA Long-Term Care Settings. The larger project is described in an earlier publication (Sales et al., 2016).

Project aims are to:

  • implement the Partnership Program at four to six VA CLCs;
  • enhance implementation of the Partnership Program using audit with feedback and action planning technique and implementing learning collaboratives; and
  • evaluate the effectiveness of the Partnership Program in increasing GOCC and documentation of preferences for LST using interrupted time-series analysis.


Ethics Approval

The Corporal Michael J. Crescenz (Philadelphia) Veterans Affairs Medical Center Research and Development Committee reviewed this protocol and deemed it quality improvement and not human subjects research.

Description of the Partnership

To strengthen relationships between families and CLC staff and decrease the stress involved in decision making (Ersek et al., 2000; Givens et al., 2012), principles of shared decision making were used to engage family members in structured conversations. Family members and the Veteran (if able) are asked to identify two or three CLC staff members whom they want to participate in meetings dedicated to discussing care preferences and GOCCs. Staff partners can be anyone on the interdisciplinary team whom the family member believes know the Veteran well, including nursing assistants, activities directors, dietitians, nurses, psychologists, chaplains, nurse practitioners, physicians, or physician assistants. In this way, the Partnership Program aims to build support and trust, improve goals of care discussions, and enhance outcomes (Hanson et al., 2017; Pillemer et al., 2003).

In these meetings, staff work in close collaboration with Veterans and their families to develop care plans to achieve three person-centered goals (Figure 1). The first goal is to identify daily preferences around care and activities. A modified version of the Pleasant Events Schedule–Nursing Home Version (PES-NH) is used to identify activities that the Veteran enjoys (Meeks, Shah, & Ramsey, 2009). The tool includes 30 activities (e.g., listening to music, sharing a meal with friends or family, attending religious services), and families can write in activities not included in the list. In the current project, discussing pleasant events and daily preferences offers a natural segue to exploring broader Veteran and family surrogate values and daily care priorities.

Community Living Center Partnership to Enhance Resident Outcomes–Goals of Care Conversations framework.Note. LST = life-sustaining treatment.

Figure 1.

Community Living Center Partnership to Enhance Resident Outcomes–Goals of Care Conversations framework.

Note. LST = life-sustaining treatment.

The second goal builds on the activities identified in the PES-NH and introduces the GOCC within the context of those activities. For instance, a family surrogate decision maker may realize that, due to advanced cognitive impairment, there are few meaningful activities beyond eating that the Veteran can engage in. Therefore, limiting oral intake and instead using medical-administered nutrition may not align with the pleasure gained from eating. In the Partnership Program, staff support surrogates and identify treatment options that consider the Veteran's values and preferences.

The third goal supports the balance between autonomy and safety. For example, an older Veteran with dementia may prefer to walk without assistance around the CLC, which poses a risk for falls, wandering outside the facility, or entering other Veterans' rooms. Determining how to maintain Veteran safety while accommodating preferences through care planning, even when the activity or behavior holds a potential risk, is based on the Rothschild Foundation's Process for Care Planning for Resident Choice (Calkins et al., 2015). Staff systematically assess the Veteran's functional abilities and engage decision makers in discussing the potential risks and outcomes of respecting these choices as well as the potential consequences of not following these choices.

Partnership Program meetings are aligned with regularly scheduled care planning meetings whenever possible. Originally, three separate meetings to achieve the program goals were anticipated: two meetings to discuss goals around daily preferences, LST, and addressing risks and autonomy and one follow-up meeting to evaluate the care plan and make revisions. Early experiences indicated that it was necessary to accomplish the first two goals in one meeting, if possible, because of challenges with scheduling family visits and staff availability.


To date, five CLCs located in the Mid-Atlantic region of the United States have been recruited. Diverse CLCs, in terms of location (rural/urban) and size, were targeted. Some CLCs include designated hospice/palliative care units, and all sites provide short stay (post-acute) and long-term care.


All new and existing CLC residents (short stay and long-term care) with a documented diagnosis of dementia and moderate to severe cognitive impairment are eligible for the Partnership Program. Residents with dementia are identified using data from the VA's Corporate Data Warehouse. Next, the roster of identified residents with dementia is reviewed with CLC staff (typically the nurse practitioner or physician assistant, nurse, and social worker) to confirm the level of cognitive impairment, identify a family decision maker, and prioritize residents for the Partnership Program. Residents who have recently demonstrated significant weight loss, recurrent infections, worsening cognitive function, falls, or have undergone repeated hospitalizations are prioritized. Residents can have as many Partnership Program meetings as needed to address changes in status, needs, and goals throughout the progression of dementia.

Implementation Strategy

The Partnership Program is a multicomponent complex innovation that requires engagement from various interdisciplinary team members and administrative leaders and changes in practice, organizational processes, and staff attitudes. For these reasons, an implementation strategy was developed to support this clinical innovation (Powell et al., 2012; Powell et al., 2015). Table 1 presents the discrete implementation strategies.

Implementation Strategies

Table 1:

Implementation Strategies

To gain entrée (Figure 2), CLCs are initially engaged by identifying a point person or person(s) at the facility, often the local LSTDI coordinators and/or the Associate Chief Nurse for the CLC (analogous to a Director of Nursing in a community NH). These contacts then identify stakeholders who can influence the implementation of the LSTDI and the Partnership Program. Key personnel differ among facilities but typically include the CLC Medical Director, nurse managers, social workers, psychologists, physicians, advance practice nurses, and chaplains. Others who may be targeted for early engagement include palliative care consult team members and quality improvement specialists. Next, a face-to-face site visit is conducted to meet staff and leaders who will be involved in the Partnership Program. During the meeting, the program and its relationship with the LSTDI are explained, program materials are shared, and questions are answered. Regularly scheduled resident care plan meetings are also attended to better understand the local context and to explore local institutional factors that may facilitate or impact implementation (e.g., other VA initiatives, leadership support, level of LSTDI engagement). Following the meeting, a summary of the visit is written, potential stakeholders who can serve as site champions are identified, and next steps in implementing the Partnership Program are planned.

Process map for gaining entrée into a facility.

Figure 2.

Process map for gaining entrée into a facility.

Because the Partnership Program is a quality improvement project, local staff are largely relied on for its implementation. For this reason, between one and three local site champions are recruited whose roles are to educate, advocate, and build relationships (Kirchner et al., 2012; Ploeg et al., 2010; Shea & Belden, 2016; Soo, Berta, & Baker, 2009). To identify committed, knowledgeable champions, a Champion Role Description was developed, which is shared at the initial site visit (Table A, available in the online version of this article). During site visits, stakeholders who exemplify these characteristics are identified, the Champion role is discussed with them, and their interest in serving in this capacity is solicited.

Partnership to Enhance Resident Outcomes: Collaborative Care Plans for Community Living Center (CLC) Residents with DementiaPartnership to Enhance Resident Outcomes: Collaborative Care Plans for Community Living Center (CLC) Residents with Dementia

Table A:

Partnership to Enhance Resident Outcomes: Collaborative Care Plans for Community Living Center (CLC) Residents with Dementia

To support implementation, educational materials developed for CLC staff are distributed, including a detailed protocol for guiding Partnership Program discussions. The protocol is an evidence-based standardized discussion tool to ensure consistency with preferred principles and practices of PCC and palliative care (Bernacki & Block, 2014; VA, 2017; Koren, 2010; National Coalition for Hospice and Palliative Care, 2013). An iterative process with stakeholder and expert feedback was used to develop the discussion tool. First, the team of geriatric and palliative care specialists drafted the tool, and two CLC clinicians with expertise in dementia and experience with GOCC provided feedback. Next, three additional geriatric experts provided suggestions for revisions. Lastly, key members of the VA National Center for Ethics in Health Care, who developed and piloted the LSTDI, provided input to ensure that the project materials were consistent with and complementary to the overall initiative (VA, 2017). The comprehensive discussion tool was condensed into a one page “tip sheet” to which staff could refer easily (Table B, available in the online version of this article).

Partnership to Enhance Resident Outcomes: Collaborative Care Plans for Community Living Center (CLC) Residents with DementiaPartnership to Enhance Resident Outcomes: Collaborative Care Plans for Community Living Center (CLC) Residents with DementiaPartnership to Enhance Resident Outcomes: Collaborative Care Plans for Community Living Center (CLC) Residents with Dementia

Table B:

Partnership to Enhance Resident Outcomes: Collaborative Care Plans for Community Living Center (CLC) Residents with Dementia

Quarterly educational live webinars for CLC staff are also offered, which focus on select topics related to dementia care, goals of care discussions, and elements of the Partnership Program. Topics were selected based on response from an online survey sent to staff at participating CLCs (Table 2). To enhance participation in the webinars, continuing education credits are offered for social workers, nurses, physicians, and psychologists, and each webinar is offered twice on different days and times. Webinars are archived for asynchronous viewing.

Topics for Educational Webinars

Table 2:

Topics for Educational Webinars

Learning collaboratives are used to bring multidisciplinary CLC teams together to promote the delivery of the Partnership Program. During learning collaboratives, participants support each other by sharing knowledge, successes, and ideas and strategies to foster quality improvement practices (Gillespie et al., 2016). Learning collaboratives integrate features of quality improvement collaboratives that participants report as most helpful: a focus on data; team cohesion; organizational context; collaborative faculty or facilitators for the collaborative; and creation of a change package (Hulscher, Schouten, Grol, & Buchan, 2013; Nembhard, 2009). For example, a web-based “toolkit” (i.e., change package) is used that includes practice changes integral to the Partnership Program, guidance on conducting and documenting GOCC, sample care plans, and materials for arranging and conducting Partnership Program meetings.

Audit and feedback is a widely used strategy to improve professional practice either on its own or as a component of multifaceted quality improvement interventions (Ivers et al., 2012). This strategy involves aggregating clinical and other performance data and trending the data over time. The aggregated data summary is provided to individual practitioners, teams, or health care organizations. Feedback reports are compiled and delivered monthly via e-mail to each site (Ivers et al., 2012; Sales, Schalm, Baylon, & Fraser, 2014). Reports present CLC facility–level data covering the percentage of Veterans with dementia having a GOCC documented on the LST progress note template and order set. CLC site staff are engaged in monthly calls during which time they review the feedback reports and develop and/or evaluate action plans to meet implementation goals.

In the context of feedback interventions, action planning refers to planned, systematic approaches to responding to gaps in performance (Ivers et al., 2012). Action planning is generally an important component of audit and feedback and learning collaboratives, which routinely use data fed back for the purpose of generating actions to improve quality of care in specific ways. Learning collaboratives support action planning in association with feedback reports. CLC teams use action planning to test and implement changes in their practice and participants share approaches to overcoming implementation barriers that can contribute to other CLC teams' action planning.


The primary outcome measure is documentation of a GOCC and the resulting LST plan using the standardized progress note template entitled “Life-Sustaining Treatment.” The LST template (Table 3) comprises eight fields, four of which are mandatory (i.e., decision making capacity; patient's goals of care; oral informed consent for the LST plan; and cardiopulmonary resuscitation [CPR] status).

Life-Sustaining Treatment Decisions Template

Table 3:

Life-Sustaining Treatment Decisions Template

Using interrupted times series analysis, significant changes in the percent of CLC residents with dementia at the facility who have a completed LST progress note template will be tested. The percentage of non-required fields for each complete (i.e., four mandatory fields documented) LST template will also be examined and quantified to determine comprehensiveness of GOCC (Bernacki & Block, 2014; Hickman, Nelson, Smith-Howell, & Hammes, 2014).

Data will be aggregated at the facility level to compare trends in LST documentation between participating facilities and a matched sample of CLCs that did not participate. To identify matched control sites, principal components analysis was used to create scores for each CLC, with separate principal components for facility characteristics, resident demographics, and case-mix. Separate scores were used to control for strong matching on one set of variables but poor matching on another. A separate principal component was created for the binary variables for statistical reasons; they are treated differently in principal components analysis. These four scores were used to calculate the Euclidean distance between the intervention sites and all other CLCs, and the two closest matches for each study site were chosen, not allowing duplicates. This method was used because it ensures better matching. The full data analytic plan is described in a previously published article (Sales et al., 2016).

Staff and surrogate perspectives will be solicited on (a) challenges in implementing the intervention; (b) satisfaction with the intervention; and (c) strategies that promoted its adoption. These data are expected to help explain how to improve conducting GOCC with surrogate decision makers. CLC champions and staff who participated in Partnership Program meetings from the participating facilities will be invited to one of three semi-structured focus group interviews via audio or videoconference. Groups that include diverse representation from the interdisciplinary team will be recruited. Interviews will begin with a statement explaining the purpose of the focus group and a reminder that no identifiable information will be linked to the transcripts. The interview guide will prompt participants to report their perceptions about barriers to and facilitators of implementing the Partnership Program and solicit examples of how the Partnership Program model helped them achieve the goals of the LSTDI. Participants will also be asked to suggest ways to improve the program.

Eight to 10 surrogate decision makers who participated in the Partnership Program will be interviewed to better understand their experience with the intervention components. For example, families will be asked how completing the PES-NH was helpful in identifying preferences for daily care and activities; if they felt better supported making decisions; and how the information discussed during the Partnership Program meeting made them feel.

Data will be analyzed using directed content analysis because the key concepts/categories have been identified a priori: Challenges, Facilitators, and Opportunities for Improvement (Hsieh & Shannon, 2005). After initial coding by one team member, the entire team will meet to review coding and develop and define categories and subcodes. Two team members will continue coding the data in its entirety. During weekly analytic meetings, the team will discuss any disagreements in coding, as well as refinements and additions to the initial categories and subcodes until consensus on final coding is reached.

Results and Discussion: Early Implementation Experiences

The protocol and standardized discussion tool for the CLC Partnership was piloted with four family/surrogate decision makers in two participating CLCs; the first author (J.C.), an experienced geriatric/palliative care nurse practitioner and co-lead on the project, role modeled the Partnership Program. The pilot sessions served as a training mechanism for staff to observe and actively participate in GOCC. In addition, the sessions provided an opportunity to evaluate the effectiveness of the process maps in outlining the identification of appropriate Veterans and their surrogates, contacting the surrogate, scheduling the partnership meeting, completing proper documentation of the meeting, and conducting subsequent follow-up meetings.

As per protocol, surrogates were asked to identify a staff member they would like to work with to develop the Partnership Program care plan. Family members chose a diverse group of clinicians, including licensed practical nurses, certified nursing assistants, social workers, psychologists, and nurses. Family members chose partners whom they trusted and who possessed long-standing, in-depth understanding about the resident. In addition to staff selected by the family, other team members present at the meetings included nurse managers, recreational therapists, resident assessment coordinators, registered dietitians, nurse practitioners and/or physician assistants, social workers, and in one meeting the hospice medical director. Each of the four partnership meetings highlighted the importance of addressing the project-level goals. Salient components of two meetings are described.

Mr. A: Enhancing Daily Preferences

Mr. A, a CLC resident for approximately 5 years with moderate cognitive impairment, enjoys participating in regularly scheduled recreational events. However, when activities are not taking place, he is frequently placed near the nurses' station so that he can be monitored for safety as he is considered at risk for falls. During the first CLC Partnership Program meeting, his daughter expressed that she would like to see her father participate in more activities. One of the items that the daughter identified on the PES-NH was attendance at religious services. The daughter described how important spirituality was to her father and, although he attended religious services at the CLC, she asked if he could attend services at the chapel located within the VA acute care hospital located across the street. The CLC social worker suggested that staff could make arrangements for a van and staff member to take him to the services at the hospital. This example highlights that, even for residents who have been at the CLC for some time, it is worth revisiting preferences for daily activities (Van Haitsma et al., 2014).

Mr. B: Balancing Autonomy and Risk

Mr. B, a CLC resident with advanced dementia and dysphagia, was prescribed a pureed diet. Despite his advanced illness and limited ability to swallow effectively, Mr. B expressed his displeasure with his diet; therefore, his family wanted him to receive a regular diet (even if it meant an increased risk of choking or aspiration). Staff were concerned about the increased choking risk and subsequent events (e.g., respiratory arrest) because Mr. B's plan of care included the use of all LSTs; a treatment decision that seemed at odds with a focus on comfort and enjoyment considering his advanced dementia and dysphagia. Discussion in the Partnership Program meeting focused on the family members' understanding of the risks and benefits of CPR and artificial ventilation in advanced dementia and the recognition that allowing Mr. B to eat a regular diet would increase the risk of choking, aspiration, pneumonia, and possible cardiac arrest. This line of questioning revealed the family members' beliefs that, by changing the Veteran's medical orders to “do not resuscitate,” he may be denied other types of LSTs, such as antibiotics. As a result of the Partnership Program meeting, staff set up another meeting with the family and Veteran's physician in the CLC to provide more information about LST decisions, determine how to honor this diet choice, mitigate risks, and review alternatives. Using the Rothschild's approach, the team aimed to maximize Mr. B's well-being.

Challenges to Implementation

After the project started, several challenges to implementing the Partnership Program were identified. First, arranging a time to hold Partnership Program meetings was difficult due to staff schedules and surrogate time restraints. Therefore, Partnership Program meetings were held during regularly scheduled care planning meetings when surrogates were already in attendance. Meeting during care plan meetings was well received because the interdisciplinary team was preassembled and prepared to discuss the Veteran's care, goals, and LST decisions with surrogates. Second, Champions ran into difficulty with staff buy-in to the program and it was found that ongoing consultation through monthly “check-in” calls are needed, which allow Champions to discuss barriers, receive coaching, and identify strategies associated with successful implementation of the intervention. Lastly, staff turnover and competing responsibilities have resulted in the need to identify new Champions and provide continuous training. Although time consuming, these tasks are essential for the success of the project.


The current quality improvement project is designed to improve GOCC and care planning around preferences for LST and daily care to promote quality of life, autonomy, and safety for VA CLC residents with dementia. The care planning process takes place through partnerships between CLC staff and family surrogate decision makers who work together to design and deliver Veteran-centric care. Although these tools and resources were designed for the VA, general LSTDI resources are freely available on the internet (access Specific Partnership Program resources will be added to the website in 2020, and are directly available from the authors.

Throughout the project, learning collaboratives will continue to be held to review feedback reports, develop and support action plans, and conduct quarterly continuing education webinars. Mixed methods will be used to evaluate outcomes, including documentation of a GOCC on the LST progress note template and order set as well as barriers to and facilitators of implementation. This project is expected to have an impact on CLC clinical practice and Veteran and family outcomes by leveraging evidence-based elements and resources within a framework to identify and act on Veterans' preferences for care.


  • American Geriatrics Society Expert Panel on Person-Centered Care. (2016). Person-centered care: A definition and essential elements. Journal of the American Geriatrics Society, 64, 15–18. doi:10.1111/jgs.13866 [CrossRef]
  • Behrens, L., Van Haitsma, K., Brush, J., Boltz, M., Volpe, D. & Kolanowski, A.M. (2018). Negotiating risky preferences in nursing homes: A case study of the Rothschild Person-Centered Care Planning Approach. Journal of Gerontological Nursing, 44(8), 11–17. doi:10.3928/00989134-20171206-02 [CrossRef]
  • Bernacki, R.E. & Block, S.D. (2014). Communication about serious illness care goals: A review and synthesis of best practices. JAMA Internal Medicine, 174, 1994–2003. doi:10.1001/jamainternmed.2014.5271 [CrossRef]
  • Calkins, M., Schoeneman, K., Brush, J. & Mayer, R. (2015). A process for care planning for resident choice. Retrieved from
  • Department of Veterans Affairs. (2017). Life-sustaining treatment decisions: Eliciting, documenting and honoring patient's values, goals, and preferences. Retrieved from
  • Engel, S.E., Kiely, D.K. & Mitchell, S.L. (2006). Satisfaction with end-of-life care for nursing home residents with advanced dementia. Journal of the American Geriatrics Society, 54, 1567–1572. doi:10.1111/j.1532-5415.2006.00900.x [CrossRef]
  • Ersek, M., Kraybill, B.M. & Hansberry, J. (2000). Assessing the educational needs and concerns of nursing home staff regarding end-of-life care. Journal of Gerontological Nursing, 26(10), 16–26. doi:10.3928/0098-9134-20001001-05 [CrossRef]
  • Foglia, M.B., Lowery, J., Sharpe, V.A., Tompkins, P. & Fox, E. (2019). A comprehensive approach to eliciting, documenting, and honoring patient wishes for care near the end of life: The Veterans Health Administration's Life-Sustaining Treatment Decisions Initiative. Joint Commission Journal on Quality and Patient Safety, 45, 47–56. doi:10.1016/j.jcjq.2018.04.007 [CrossRef]
  • Gillespie, S.M., Olsan, T., Liebel, D., Cai, X., Stewart, R., Katz, P.R. & Karuza, J. (2016). Pioneering a nursing home quality improvement learning collaborative: A case study of method and lessons learned. Journal of the American Medical Directors Association, 17, 136–141. doi:10.1016/j.jamda.2015.08.014 [CrossRef]
  • Givens, J.L., Kiely, D.K., Carey, K. & Mitchell, S.L. (2009). Healthcare proxies of nursing home residents with advanced dementia: Decisions they confront and their satisfaction with decision-making. Journal of the American Geriatrics Society, 57, 1149–1155. doi:10.1111/j.1532-5415.2009.02304.x [CrossRef]
  • Givens, J.L., Selby, K., Goldfeld, K.S. & Mitchell, S.L. (2012). Hospital transfers of nursing home residents with advanced dementia. Journal of the American Geriatrics Society, 60, 905–909. doi:10.1111/j.1532-5415.2012.03919.x [CrossRef]
  • Hanson, L.C., Zimmerman, S., Song, M.K., Lin, F.C., Rosemond, C., Carey, T.S. & Mitchell, S.L. (2017). Effect of the goals of care intervention for advanced dementia: A randomized clinical trial. JAMA Internal Medicine, 177, 24–31. doi:10.1001/jamainternmed.2016.7031 [CrossRef]
  • Harris-Kojetin, L., Sengupta, M., Park-Lee, E., Valverde, R., Caffrey, C., Rome, V. & Lendon, J. (2016). Long-term care providers and services users in the United States: Data from the National Study of Long-Term Care Providers, 2013–2014. Vital & Health Statistics, 38, x–xii; 1–105.
  • Hickman, S.E., Nelson, C.A., Smith-Howell, E. & Hammes, B.J. (2014). Use of the Physician Orders for Life-Sustaining Treatment program for patients being discharged from the hospital to the nursing facility. Journal of Palliative Medicine, 17, 43–49. doi:10.1089/jpm.2013.0097 [CrossRef]
  • Hsieh, H.F. & Shannon, S.E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15, 1277–1288. doi:10.1177/1049732305276687 [CrossRef]
  • Hulscher, M.E., Schouten, L.M., Grol, R.P. & Buchan, H. (2013). Determinants of success of quality improvement collaboratives: What does the literature show?BMJ Quality & Safety, 22, 19–31. doi:10.1136/bmjqs-2011-000651 [CrossRef]
  • Institute of Medicine. (2015). Dying in America: Improving quality and honoring individual preferences near the end of life. Washington, DC: The National Academies Press.
  • Ivers, N., Jamtvedt, G., Flottorp, S., Young, J.M., Odgaard-Jensen, J., French, S.D. & Oxman, A.D. (2012). Audit and feedback: Effects on professional practice and healthcare outcomes. Cochrane Database of Systematic Reviews, 6, CD000259. doi:10.1002/14651858.CD000259.pub3 [CrossRef]
  • Karlin, B.E., Visnic, S., McGee, J.S. & Teri, L. (2014). Results from the multisite implementation of STAR-VA: A multicomponent psychosocial intervention for managing challenging dementia-related behaviors of veterans. Psychological Services, 11, 200–208. doi:10.1037/a0033683 [CrossRef]
  • Kirchner, J.E., Parker, L.E., Bonner, L.M., Fickel, J.J., Yano, E.M. & Ritchie, M.J. (2012). Roles of managers, frontline staff and local champions, in implementing quality improvement: Stakeholders' perspectives. Journal of Evaluation in Clinical Practice, 18, 63–69. doi:10.1111/j.1365-2753.2010.01518.x [CrossRef]
  • Koren, M.J. (2010). Person-centered care for nursing home residents: The culture-change movement. Health Affairs, 29, 312–317. doi:10.1377/hlthaff.2009.0966 [CrossRef]
  • Lemke, S. (2012). Veterans Health Administration: A model for transforming nursing home care. Journal of Housing for the Elderly, 26(1–3), 183–204. doi:10.1080/02763893.2012.658286 [CrossRef]
  • Li, J. & Porock, D. (2014). Resident outcomes of person-centered care in long-term care: A narrative review of interventional research. International Journal of Nursing Studies, 51, 1395–1415. doi:10.1016/j.ijnurstu.2014.04.003 [CrossRef]
  • Meeks, S., Shah, S.N. & Ramsey, S.K. (2009). The Pleasant Events Schedule–Nursing Home version: A useful tool for behavioral interventions in long-term care. Aging and Mental Health, 13, 445–455. doi:10.1080/13607860802534617 [CrossRef]
  • National Coalition for Hospice and Palliative Care. (2013). Clinical practice guidelines for quality palliative care (3rd ed.). Retrieved from
  • Nembhard, I.M. (2009). Learning and improving in quality improvement collaboratives: Which collaborative features do participants value most?Health Services Research, 44, 359–378. doi:10.1111/j.1475-6773.2008.00923.x [CrossRef]
  • Pillemer, K., Suitor, J.J., Henderson, C.R. Jr.. , Meador, R., Schultz, L., Robison, J. & Hegeman, C. (2003). A cooperative communication intervention for nursing home staff and family members of residents. The Gerontologist, 2, 96–106. doi:10.1093/geront/43.suppl_2.96 [CrossRef]
  • Ploeg, J., Skelly, J., Rowan, M., Edwards, N., Davies, B., Grinspun, D. & Downey, A. (2010). The role of nursing best practice champions in diffusing practice guidelines: A mixed methods study. Worldviews on Evidence-Based Nursing, 7, 238–251. doi:10.1111/j.1741-6787.2010.00202.x [CrossRef]
  • Powell, B.J., McMillen, J.C., Proctor, E.K., Carpenter, C.R., Griffey, R.T., Bunger, A.C. & York, J.L. (2012). A compilation of strategies for implementing clinical innovations in health and mental health. Medical Care Research Reviews, 69, 123–157. doi:10.1177/1077558711430690 [CrossRef]
  • Powell, B.J., Waltz, T.J., Chinman, M.J., Damschroder, L.J., Smith, J.L., Matthieu, M.M. & Kirchner, J.E. (2015). A refined compilation of implementation strategies: Results from the Expert Recommendations for Implementing Change (ERIC) project. Implementation Science, 10, 21. doi:10.1186/s13012-015-0209-1 [CrossRef]
  • Sales, A.E., Ersek, M., Intrator, O.K., Levy, C., Carpenter, J.G., Hogikyan, R. & Reder, S. (2016). Implementing goals of care conversations with veterans in VA long-term care setting: A mixed methods protocol. Implementation Science, 11, 132. doi:10.1186/s13012-016-0497-0 [CrossRef]
  • Sales, A.E., Schalm, C., Baylon, M.A. & Fraser, K.D. (2014). Data for improvement and clinical excellence: Report of an interrupted time series trial of feedback in long-term care. Implementation Science, 9, 161. doi:10.1186/s13012-014-0161-5 [CrossRef]
  • Shea, C.M. & Belden, C.M. (2016). What is the extent of research on the characteristics, behaviors, and impacts of health information technology champions? A scoping review. BMC Medical Informatics and Decision Making, 16, 2. doi:10.1186/s12911-016-0240-4 [CrossRef]
  • Soo, S., Berta, W. & Baker, G.R. (2009). Role of champions in the implementation of patient safety practice change. Healthcare Quarterly, 12, 123–128. doi:10.12927/hcq.2009.20979 [CrossRef]
  • Utley-Smith, Q., Colón-Emeric, C.S., Lekan-Rutledge, D., Ammarell, N., Bailey, D., Corazzini, K. & Anderson, R.A. (2009). The nature of staff–family interactions in nursing homes: Staff perceptions. Journal of Aging Studies, 23, 168–177. doi:10.1016/j.jaging.2007.11.003 [CrossRef]
  • Van Haitsma, K., Abbott, K.M., Heid, A.R., Carpenter, B., Curyto, K., Kleban, M. & Spector, A. (2014). The consistency of self-reported preferences for everyday living: Implications for person centered care delivery. Journal of Gerontological Nursing, 40(10), 34–46. doi:10.3928/00989134-20140820-01 [CrossRef]

Implementation Strategies

StrategiesCLC Partnership Program Examples
Develop educational materials (manuals, toolkits, and other supporting materials)

Process maps to determine eligibility and enrollment; plan for and conduct meeting(s); and document discussion and decisions

Detailed protocol for guiding Partnership discussions

Brief “tip sheet” about conducting goals of care conversations

Conduct educational meetings with stakeholders to teach about the innovationQuarterly educational webinars with CLC staff on topics important when preparing for and conducting the Partnership meetings and planning care for individuals with dementia.
Identify and prepare championsDiscuss the roles and characteristics of the site champion (Table A) with stakeholders to solicit their interest in serving in this capacity.
Audit and provide feedbackCompile and deliver monthly feedback reports that include facility-level data on the percentage of residents with dementia with a documented goals of care conversation and complete LST order set.
Create a learning collaborativeSite champions engage in monthly calls to review the feedback reports; share ideas and best practices; address barriers together; and develop and/or evaluate action plans to meet their goals.

Topics for Educational Webinars

Clinical stages of dementia
Common complications in dementia (e.g., infections, swallowing difficulties, weight loss)
Challenges with prognostication
Identifying specific decisions that many families are asked to make during the course of dementia
Roles and expectations of the surrogate decision maker
Working with multiple surrogate decision makers
Assisting surrogate decision makers to discuss and make difficult decisions
Effective ways to introduce a goals of care conversation to surrogate decision makers
Using the Pleasant Events Schedule to guide a goals of care conversation
How to talk with surrogate decision makers about life-sustaining treatment therapies
Discussing the risks and benefits of tube feeding and intravenous fluids in residents with dementia
Roles of interdisciplinary team members in care planning around daily preferences
Discussing the risks and benefits of hospitalization for residents with dementia
Discussing antibiotic use for residents with dementia
Dealing with conflict when surrogates and staff do not agree about the goals of care
Discussing the risks and benefits of cardiopulmonary resuscitation for residents with dementia
Comfort care: What does it mean and how do we deliver it to residents with dementia?
Other (specify)

Life-Sustaining Treatment Decisions Template

*1. Does the patient have capacity to make decisions about life-sustaining treatments?
2. Who is the person authorized under VA policy to make decisions for the patient if/when the patient loses decision-making capacity?
3. Have you reviewed available documents that reflect the patient's wishes regarding life-sustaining treatments? Examples: advance directives, state-authorized portable orders (e.g., POLST, MOST), life-sustaining treatment notes/orders.
4. Does the patient (or surrogate) have sufficient understanding of the patient's medical condition to make informed decisions
about life-sustaining treatments?
*5. What are the patient's goals of care?
     • Patient's goals of care in his/her own words, or as stated by the surrogate:
     • To be cured of:__________________________
     • To prolong life
     • To improve or maintain function, independence, quality of life
     • To be comfortable
     • To obtain support for family/caregiver
     • To achieve life goals, including: ________________________
6. What is the current plan for use of life-sustaining treatments?
    • FULL SCOPE OF TREATMENT in circumstances OTHER than cardiopulmonary arrest.
    • Limit life-sustaining treatment
    • No life-sustaining treatment in circumstances OTHER that cardiopulmonary arrest.
       ○ Full Code: Attempt CPR
       ○ DNAR/DNR: Do not attempt CPR
       ○ DNAR/DNR with exception: ONLY attempt CPR during the following procedure:_________________.
    • Artificial Nutrition
    • Artificial Hydration
    • Mechanical Ventilation
    • Transfers between Levels of Care
    • Limit other life-sustaining treatment as follows (e.g., blood products, dialysis)
7. Who participated in this discussion?
*8. Who has given oral informed consent for the life-sustaining treatment plan outlined above?

Partnership to Enhance Resident Outcomes: Collaborative Care Plans for Community Living Center (CLC) Residents with Dementia

Site Champion Description
The goal of this Quality Improvement (QI) project is to improve care planning associated with comfort, quality of life, autonomy, and safety for Community Living Center (CLC) residents with dementia. The care planning process will take place through partnerships between staff and family/decision-makers that focus on three person-centered goals of care: 1) identifying and honoring preferences for daily living and care, 2) discussing veterans' preferences for medical therapies at the end-of-life (e.g. life-sustaining treatments), and 3) balancing veteran and family rights to direct care with the potential risks of those choices. This project is separate from but supports the implementation of the Life-Sustaining Treatment (LST) Decisions: Eliciting, Document and Honoring Patient's Value, Goals and Preferences initiative ( Developed by the VA Center for Ethics in Health Care, the initiative seeks to increase the number, quality, and documentation of goals of care conversations with veterans who have serious, life-limiting illnesses. We extend the scope of this initiative by including the elements of preferences for daily care and balancing autonomy and risks.
Our QI project team will work with CLC staff in establishing a partnership and supporting them by providing scripts, role modeling, and educational resources to help guide the discussions, particularly end-of-life conversations. Each CLC facility will have two Site Champions. Preferably, one Champion will be a clinical staff member and the other will have an administrative position.
Site Champions, as well as other select CLC staff, will receive regular feedback regarding their unit/facility's progress towards the completion of goals of care conversations and care planning. Site Champions and interested staff can also participate in virtual collaborative learning groups in which CLCs support one another, tackle barriers together, and share best practices.
Site Champions should:

be interested in and committed to supporting goals of care discussions for CLC residents with dementia

be committed to QI in CLCs

be knowledgeable or willing to learn about the LST initiative

be respected by his or her peers

possess good communication skills

possess in-depth knowledge about the institution and organizational culture

The specific roles of the Site Champions are to:     Educate

attend the LST initiative training session, if appropriate

serve as a local expert and resource to staff about the Partnership to Enhance Resident Outcomes QI Project

relay information between the CLC staff and the QI project staff


keep facility staff and leadership engaged in and committed to the QI project

communicate the importance of the QI project in improving the quality of life for veterans and their families

foster participation in the QI project among CLC facility staff

    Build relationships

cultivate relationships with CLC staff that promote and support the partnership

communicate with CLC facility staff and leadership about their role

be actively engaged in activities (e.g. face-to-face meetings, webinars, and phone conferences) related to the project

    Navigate boundaries

keep in close contact with CLC facility staff, especially those who might question the value of the QI project

openly communicate with team members about challenges they encounter

brainstorm about opportunities to overcome real or perceived barriers

Why volunteer to be a Site Champion?
  The main reason to become a Site Champion is to support and promote resident and family-centered care. Becoming a Site Champion can assist staff in their professional goals to assume greater responsibility in the improvement of resident centered care. It also allows staff members to evolve professionally as the VA transforms the way LST preferences and decisions are documented nation-wide.

Partnership to Enhance Resident Outcomes: Collaborative Care Plans for Community Living Center (CLC) Residents with Dementia

Talking Points
Important considerations to keep in mind when conducting a goals of care conversation

Questions should always be veteran-centered

Provide only as much information as the family member/surrogate decision maker is ready for

Stay attuned to the family member/surrogate decision maker's responses and to how the conversation is proceeding

Allow the family member/surrogate decision maker to do the majority of the talking, focus on asking questions

After each topic area is discussed, ask the family member/surrogate decision maker if you can proceed to the next subject

Discuss in detail, only the life-sustaining treatment options that are most relevant for the resident (e.g., artificial nutrition for dementia)


Begin the meeting by introducing those in attendance

Explain the goal of the Partnership: to improve care planning associated with comfort, quality of life, autonomy, and safety for CLC residents with dementia

Recognizing Value of Family Input

Begin the conversation by asking the family member/surrogate decision maker to provide a personal history about the resident

Ask family member/surrogate decision maker how they feel day to day care is “going”

Pleasant Events Schedule

Use the Pleasant Events Schedule as a way to guide the goals of care conversation

Review Pleasant Events Schedule activities and ask about additional/other possible activities

Honoring choice and mitigating risk

Explain that the goal is to honor the resident's choices, while mitigating risk

Discuss the risks associated with a stated activity and the need to create a balance between the benefit of the activity and the risk

Beginning a goals of care conversation

Ask the family member/surrogate decision maker to describe the resident's current medical condition

Pose additional questions to further ascertain the family member/surrogate decision maker's understanding of the resident's medical condition

Role of a surrogate decision maker

Solicit information about how the family member/surrogate decision maker views their role as a health care decision maker

Inquire about previous conversation(s) they may have had with the resident regarding life-sustaining treatment issues

Ask about the family member/surrogate decision maker's understanding of the resident's beliefs/feelings about end-of-life decisions

Introducing life-sustaining treatment concepts

Explain to family member/surrogate decision maker that life-sustaining treatment decisions are medical orders that can be changed at any time and under different circumstances

Pose the following goals of care question(s):

“How would the Resident respond to these questions:

I would like my life prolonged if:

I would not want my life prolonged if:

I would like to improve or maintain certain functions a certain level of independence, and/or a certain quality of life:

I would like to be comfortable and allow death to occur naturally without the use of artificial life support:

I would like to achieve the following life goals: (examples: attend an event, achieve a milestone)”

Ask about the family member/surrogate decision maker's knowledge of life-sustaining treatment options

Life-sustaining treatment options

After reviewing each life-sustaining treatment option, ask family member/surrogate decision maker is they would like educational materials

Discuss the potential benefit, risk and success rate for each scope of treatment:


mechanical ventilation

artificial nutrition and hydration


blood transfusions

antibiotic use

○ Introduce the concept of care continuity

Ask about the various conditions under which the resident should or should not be hospitalized

Concluding the goals of care conversation

Review/summarize what was discussed during the Partnership meeting

Schedule another Partnership meeting if applicable

If an additional Partnership meeting is warranted, explain what topics will be discussed

Obtain scheduling information if applicable:

Possible dates/times

Identify preferred method of communication regarding the meeting (e.g. telephone, e-mail or mail)


Dr. Carpenter is Health Science Specialist, and Dr. Ersek is Senior Scientist, Department of Veterans Affairs, and Professor of Palliative Care, University of Pennsylvania School of Nursing, Philadelphia, Pennsylvania; Dr. Miller is Professor of Health Services, Research & Practice, Center for Gerontology and Healthcare Research, Brown University School of Public Health, Providence, Rhode Island; Dr. Kolanowski is Professor of Nursing, The Pennsylvania State University, College of Nursing, University Park, Pennsylvania; Dr. Karel is National Mental Health Director, Office of Mental Health and Suicide Prevention Department of Veterans Affairs Central Office, Washington, DC; Dr. Periyakoil is Associate Director, Palliative Care Services, VA Palo Alto Health Care System, and Associate Professor of Medicine, Stanford University School of Medicine, Palo Alto, California; Dr. Lowery is Chief (Acting), Ethics Policy, Department of Veterans Affairs, National Center for Ethics in Health Care, Washington, DC; Dr. Levy is Director of Palliative Medicine, Denver Veterans Affairs Medical Center, and Associate Professor of Medicine, University of Colorado School of Medicine, Denver, Colorado; and Dr. Sales is Research Scientist, Center for Clinical Management Research, VA Ann Arbor Healthcare System, and Professor and Associate Chair for Educational Programs and Health System Innovation, University of Michigan Medical School, Ann Arbor, Michigan.

Drs. Carpenter, Karel, Periyakoil, Lowery, Levy, Sales, and Ersek are employees of the Department of Veterans Affairs (VA). This work is supported by the VA, Veterans Health Administration, Quality Enhancement Research Initiative (QUE 15-288). The views expressed in this article are those of the author(s) and do not necessarily represent the views of the Department of Veterans Affairs. Drs. Miller and Kolanowski have disclosed no conflicts of interest, financial or otherwise.

Address correspondence to Joan Carpenter, PhD, CRNP, ACHPN, Health Science Specialist, Corporal Michael J. Crescenz VA Medical Center – Philadelphia, 3900 Woodland Avenue, Annex Suite 203, Philadelphia, PA 19104; e-mail:

Received: October 29, 2018
Accepted: January 09, 2019


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