Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

A Framework for Collaborative Consumer-Centered Care

Sally Okun, RN, BSN, MMHS

[Citation: Okun S. A framework for collaborative consumer-centered care. Innovations in End-of-Life Care. 2003;5(3): www.edc.org/lastacts.]

As a hospice clinician, I often found myself in the company of patients and their loved ones grasping, for the first time, that death was near or cure unattainable. In frustration, I wondered how many opportunities had been missed during the trajectory of their illness to seek and/or to receive expert anticipatory guidance for the inevitable outcomes that were ahead. In recent years, as the knowledge base within the field of palliative care has progressed, individualized advance care planning (ACP) is emerging as a promising intervention to support such opportunities for ongoing conversations throughout the wellness, illness and aging continuum across any care setting.

Yet, planning for our needs over time or advocating for the needs of those we care for and about is a daunting task made even more challenging by the complexity of the US health care system. Most consumers lack the experience, knowledge, and skill needed to navigate the system's fragmented array of health and human services; and providers lack a conceptual roadmap and practical experience to collaborate and plan across those services. To help both providers and consumers work within the system more effectively, I created CAReTOGRAPHY, an innovative framework that fosters cross-provider, consumer-centered care—both fundamental components of individualized ACP. Visualized as a jigsaw puzzle, this framework promotes a collaborative practice model for care and decision making that respects the perspectives and methods of different providers, while assuring that the consumer is the locus of collaboration and planning over time.¹ This model assumes that living well across the lifespan requires creative collaboration and anticipatory guidance involving the multiple communities that make up a health care consumer's life.

In this article, I describe how this framework was used in one Massachusetts county to shift the focus of ACP to a process of exploring options, understanding choices, and establishing trust in the context of an individual's circumstances and in the communities where that person lives, works, congregates, socializes, and otherwise spends time. The reader will follow the evolution of LifeCare Conversations^®, a community-wide ACP initiative on Cape Cod, which was developed using these mapping strategies and was modeled after Respecting Choices^®.² The intent of LifeCare Conversations (LCC) is to empower consumers to expect that their values, preferences, and goals of care will be known, respected and honored as their needs evolve across the lifespan; and to offer training for providers to integrate collaborative ACP into their practice as a routine component of quality care.

Most importantly, the article describes a vision of how the framework of CAReTOGRAPHY and the process of ACP can change our health care system. Placing the consumer at the center of care, and seeking to listen and respond to the articulated needs of consumers and those close to them would represent a revolutionary shift away from the status quo.³ We can use these tools to create opportunities to maximize available resources, identify gaps and/or redundancies in those resources, and potentially uncover previously invisible sources of support for a consumer's changing needs over time, during wellness or illness, and throughout aging.

Mapping Strategies for Care, One Consumer at a Time

In 1996, I began working on a conceptual model for consumer-centered care that could have broad application across diverse populations and provider settings. The philosophical and theoretical framework would resemble the coordinated and interdisciplinary team structure of hospice, a framework I knew well from years of clinical work in end-of-life and oncology care settings. Additionally, it would embrace the emerging precepts of palliative care⁴ which, when applied across the health care delivery system, translate into a framework of respectful and individualized care for all. The model has evolved into a strategy for mapping the communities involved in the life of a person while seeking points of access for collaboration across those communities. The model visually presents as a jigsaw puzzle and is named CAReTOGRAPHY, owing to my youthful passion for map making.

This deceptively simple model is designed to create mapping strategies for care across the lifespan, a concept I refer to as life care. When fully integrated, the model supports cross-provider collaboration, a characteristic woefully absent in our current health care delivery system. Each community in a consumer's life becomes a potential resource for both formal and informal support. Coordinated involvement across these communities creates potential for improvement in the quality and effectiveness of lifecare experiences, especially when utilized for elders, or for anyone during times of illness and caregiving. Studies have shown that coordination across systems of care has a strong positive effect on the quality and efficiency of that care.⁵

The structure of the CAReTOGRAPHY model is a large puzzle with the centerpiece representing the consumer and the surrounding pieces representing the multiple communities that make up the fabric of that consumer's life or environment. The term "consumer," as used in this model, can be applied at the levels of the individual, the organization, specific programs, and even projects that encompass an entire community. The identity of the centerpiece is determined by one's purpose for employing a consumer-centered approach to a particular situation. The pieces surrounding the center represent the following communities:

• Intimate community: family, friends, neighbors, faith/religious congregations, employers, etc.
• Health care community: physician, specialists, home health, hospice, mental health providers, pharmacies, laboratories, medical equipment, etc.
• Financial/legal community: attorneys, financial planners, investments, insurance, etc.
• Governance/education community: police, fire, and other public services, schools, human services, entitlement programs, etc.
• Local, state, regional, national networks: advocacy groups, philanthropy, research centers, etc.

At the individual level, this model is especially useful for identifying points of collaboration across various resources. Health care consumers often have multiple communities involved in different aspects of their care and support, including health and human service providers, faith-based groups, and informal caregivers, such as family, friends, and neighbors. This model encourages the user (e.g., a health care provider) to identify the barriers to and the opportunities for collaboration, and to create linkages across these multiple communities. It prompts—in fact, it almost forces—the user to consider where he or she fits in the overall scheme of the consumer's life, creating connections and relationships to all other pieces of the puzzle. A key feature of this model is that it requires providers to ask the consumer what he or she needs versus telling the consumer only about their particular agency's services. Using this model successfully requires providers to blend careful listening and thoughtful guidance into assessment and practice, one consumer at a time. (See Appendix 1 for an example of how the model can be used with an individual health care consumer.)

Because of the simplicity of this model, providers may be skeptical of its power and feel insulted by the presumption that they do not fully assess their client's needs through a multi-faceted process. In fact, most providers do conduct comprehensive assessments and impart large amounts of information when determining eligibility for their services. However, in the event that the consumer does not qualify for services, fit the programmatic criteria, or simply declines the service, there is little incentive for the provider to explore that person's needs further or seek other resources. Certainly, I am not suggesting that individual providers are disinterested in offering comprehensive, coordinated care. The problem here is at the systems level. Our current fragmented system of care—including its reimbursement methods, staffing, and information flow—lacks mechanisms to support relational coordination across non-related organizations, agencies, or services.⁶

Coordination of care across settings

Relational coordination is a theoretical construct best described as coordination carried out in the context of shared goals, shared knowledge, and mutual respect among all those involved with a particular consumer.⁷ Much of the research on relational coordination and collaborative practice has been conducted within hospital settings and does not encompass the whole episode of care for individual consumers, who upon discharge are likely to receive follow-up care from a variety of unrelated care providers in the community. Increasingly, consumers return home with chronic and advancing illness to informal caregivers ill-prepared for the task of managing, coordinating, and guiding their care. Studies indicate that successful relational coordination across organizations correlates with higher levels of consumer satisfaction, improved clinical outcomes, and more efficient utilization of resources.⁸

Mapping as a tool for advance care planning

A review of the literature on advance directives and end-of-life care^9-14 emphasized the failure of advance directive documents alone to improve end-of-life decision making or coordination of care. Researchers suggest that new frameworks for communication, dialogue, and negotiation are needed for end-of-life decision making to reflect more accurately the values and preferences of an individual unable to communicate on his or her own. Consumers and providers alike are often confused about the legal status of various advance directive documents; the portability of documents from setting to setting; the various kinds of documents; and ultimately, the interpretation of a document's intent. Additionally, health care providers are uncertain about their role in initiating advance directive discussions and may lack the comfort and confidence needed to engage consumers in effective ACP. Thus, anticipatory guidance across an illness trajectory is limited, if available at all.

Creating congruence between the framework of CAReTOGRAPHY and the process of ACP extends beyond the end-of-life time frame. I suggest that if consumers and providers engage in ongoing individualized ACP across the lifespan, the potential exists for improving their respective skills in the decision-making process for the myriad issues that emerge. Additionally, increasing public awareness about ACP as a life-long activity allows us to "see" many consumers who were previously invisible, though living among us in need of comprehensive and coordinated support. These consumers often struggle quietly, living with chronic, sometimes debilitating illnesses and caregiving demands for many years without adequate guidance to anticipate what's ahead.

Finding the Right Place at the Right Time to Test the Model

In 1999, my family and I moved to Cape Cod, Massachusetts, a peninsula on the Atlantic Ocean. Cape Cod is a unique mix of remote rural and urban environments with a year-round population of approximately 220,000 people. The economy is seasonal, based largely on summer tourism, and characterized by relatively low-paying service jobs and a high cost of living. Approximately 18 percent of residents have no health insurance. Many more are underinsured due to the nature of their seasonal employment. The region has become increasingly diverse in the past decade as immigrants from other countries, especially Brazil, have settled in the area. The population is aging rapidly: the 2000 Census revealed that nearly 37 percent of the 94,882 households include individuals 65 years or older—an increase of 15 percent over the 1990 Census. In some Cape Cod towns, the population of the very old, (over 85 years) has increased at a startling rate, the highest in the town of Brewster, which saw an increase of 118 percent from 1990 to 2000. Demographically, Cape Cod is now what much of the country will look like in the coming decade. Thus, it seemed to be an ideal environment for testing strategies for mapping life care across the lifespan.

At the same time, as a member of what was emerging as the Massachusetts Compassionate Care Coalition (MCCC), I was part of a group working on a proposal for an early intervention, ACP initiative. MCCC was interested in Respecting Your Choices^®, the ACP program created by Dr. Bernard Hammes; principals of MCCC learned of this program in the January-February 1999 issue of Innovations in End of Life Care.¹⁵ I was especially intrigued by the individualized approach used by Dr. Hammes to frame ACP conversations, and the program's success in ultimately honoring those plans across the participating hospital systems.¹⁶ His community-wide and holistic focus meshed well with my own. Although the MCCC grant request was not funded, some of us went on to explore other possibilities for ACP projects in various settings. I chose to focus my attention on using the community mapping strategies of CAReTOGRAPHY to create an ACP initiative in my new community on Cape Cod.

I envisioned a collaborative to engage Cape Codders in conversations about their role in life care planning and decision making over time for themselves and those in their care. The collaborative would create strategies for consumers to learn how to participate in meaningful discussions with those close to them, including their health care providers, about evolving life care choices that would reflect their values and preferences. Simultaneously, the collaborative would use the curriculum of Respecting Choices to teach providers the skills, knowledge, and behaviors they would need to integrate ACP at the organizational and programmatic level as well as at the individual level. Conceptually, this collaborative model suggested that ACP not be limited to end-of-life care decisions, but encompass the myriad health-related decisions that face consumers across the lifespan.

Finding Allies and Colleagues in Massachusetts and Wisconsin

Not long after arriving on Cape Cod, I began to explore the community's existing end-of-life and palliative care resources. The community seemed well served by Hospice of Cape Cod, later renamed Hospice & Palliative Care of Cape Cod (HPCCC). For more than twenty years, HPCCC has been the primary provider of care for persons living with the impact of serious illness and loss on Cape Cod. The organization has a long track record of excellence and innovation, and a commitment to community-based collaboration, operating two hospice residences and a community-focused bereavement program for all generations. The area is also home to Cape Cod Healthcare, the region's largest employer with more than 20 affiliated health and human service organizations, including the Cape's two community hospitals. In 1999, HPCCC was very close to merging with Cape Cod Healthcare, but ultimately decided to remain an independent, community-based hospice program. Along with that decision came the knowledge that Cape Cod Healthcare would eventually seek to open its own hospice program through its Visiting Nurse Association. The potential for competition motivated the leadership of HPCCC to explore opportunities to strengthen its market position and to broaden its scope of community outreach. In the summer of 1999, HPCCC expressed interest in working with me to launch my concept for a community-wide collaborative approach for life care planning and palliative care.

What's in a name?

The name of the evolving collaborative needed to be different from Respecting Choices because of our intention to go beyond end-of-life care planning and decision making. Since the collaborative would promote the themes of living well at any stage of life, it was important to avoid words that evoked images of dying. The name needed to embody the idea that life care planning is a dynamic process involving a progression of conversations throughout life. The name LifeCare Conversations Collaborative (LCC) emerged. As the Collaborative has evolved over the past three years, the name has proven itself to be engaging and provocative while remaining non-threatening to consumers and providers alike.

LifeCare Conversations Collaborative

In the fall of 1999, Dr. Bud Hammes, creator of the Respecting Choices program, came to Worcester, Massachusetts on the invitation of Dr. H. Brownell Wheeler, a noted surgeon and member of the Massachusetts Compassionate Care Coalition, to present a two-day introduction and training session on Respecting Choices. Knowing my interest in ACP, Dr. Wheeler invited me to attend the program and meet Dr. Hammes. In short order, I knew this would be the program to emulate for the Cape Cod community, especially when Dr. Hammes announced his plans to conduct the first national, four-day Respecting Choices Train-the-Trainer program in May 2000 for teams from around the country. Dr. Hammes agreed to hold a spot in the program for a team from Cape Cod. The development of the LCC Collaborative was suddenly on a fast track if we were to be ready to take a team to La Crosse in May.

By the end of 1999, the development of LCC as a community-wide ACP collaborative was well underway. In retrospect, I realize I was paving two parallel paths. One path would provide the opportunity to move the consumer-centered framework of CAReTOGRAPHY from theory to practice using LCC as the laboratory; the other path provided the opportunity to move the community-centered collaborative of LCC from concept to implementation using Respecting Choices as the model. The balance of this article will report the simultaneous journey on both paths highlighting the implicit and explicit use of strategies from CAReTOGRAPHY and Respecting Choices along the way.

Mapping a Community Collaborative

As I began to develop strategies for launching a community-wide initiative to educate Cape Codders about ACP modeled after Respecting Choices, I needed to carefully consider the image associated with the project's relationship to HPCCC as the coordinating organization of LCC. This would prove to be both a challenge and an advantage. On one hand, HPCCC is a trusted and well-respected health care provider on Cape Cod; on the other hand, the word "hospice" can evoke strong negative perceptions.¹⁷ Therefore, much attention was paid to choosing language and vocabulary that suggested ACP as a method for maintaining a sense of wellness across the lifespan, especially during illness and caregiving. Over time, this message has evolved to include the suggestion that community hospices are uniquely positioned to appreciate the importance of effective ACP because they have cared for hundreds of patients and their caregivers, who are often in crisis, without prior anticipatory guidance. For the most part people respond well to this and, in fact, applaud HPCCC for taking the lead on this important consumer-focused project.

Because the initial steps in any community engagement process are often critical to its eventual success, another important mapping strategy for LCC was to contact leaders in the health and human services, financial/legal groups, civic and county leaders, and faith-based organizations to enlist their interest in the project as a win-win strategy for their constituency. From November 1999 to January 2000, I worked on strategies to identify the key stakeholders who should be approached to participate in LCC. This involved multiple steps, including working closely with Mary McCarthy, president and founder of HPCCC, to identify the organizations and community leaders that would be effective collaborators. This allowed me, a relative newcomer to the area, to capitalize on her depth of expertise about local leaders, care systems, and networks. Mary's introduction and endorsement of LCC also substantially contributed to my credibility as a consultant, and increased the significance of the project in the eyes of the collaborating organizations.

Once the stakeholders were identified, they were invited to participate in an Executive Roundtable Meeting to learn about LCC and to enlist their support in moving the project into their community of consumers and providers. Prior to the Roundtable meeting, I created a Collaborator Profile for each executive. I then held one-on-one meetings with them to build interest in LifeCare Conversations. During these sessions, armed with my pre-meeting research from the Collaborator Profile, I was able to ask pertinent questions as well as anticipate and then address particular concerns of each leader about the project. I cited specific examples of how the project could benefit both their organization and the population they served. Also, I drafted a Collaborative Statement that listed specific project outcomes and articulated the leaders' commitment to the LCC Collaborative. The idea of using an Executive Roundtable Meeting and Collaborator Statement came from the experiences of Dr. Hammes in his early discussions with the four health systems and the clergy in La Crosse, Wisconsin. Dr. Hammes acknowledged the importance of reaching key people early in the process and recommended engaging them in the common purpose of respecting the values that individuals and their loved ones hold dear.¹⁸

Another early mapping strategy was to develop ways to explain LCC to consumer and provider audiences. The Roundtable invitees supported the idea that LCC be a collaborative community outreach project designed to assist Cape Codders—especially those who are aging, living with illness, or caregiving—to participate more fully in their own health care decisions and discuss them with those who may eventually need to make decisions on their behalf. In addition, LCC would not limit discussions to end-of-life issues, but help consumers and their providers become more skilled in exploring options and understanding choices for any health care decision as a routine component of quality care across the lifespan. The notion that living well across the lifespan requires planning and collaboration has since become the hallmark of LCC's consumer-focused message.

The Executive Roundtable meeting was held in March 2000. The leaders learned how their organization fit within the collaborative. Each leader signed the Collaborator Statement and approved a press release about the collaborative project. Additionally, we discussed how, with their assistance, we could continue to engage other consumer and provider groups in the Cape Cod community. Mapping our own evolving organization, using the CAReTOGRAPHY model, the groups fell into the following categories:

• Intimate community: faith-based groups, cultural groups and interpreter's program, employer groups, consumers; arts groups
• Health care community: Alzheimer's Service of Cape Cod, cancer center, elder services, Hospice of Cape Cod, physician groups, Cape Cod Healthcare, home care agencies
• Financial/legal: technology council, elder attorney groups, funeral services, consumer advocates, reporters, media
• Governance/education community: Barnstable County Department of Human Service, Emergency Medical Services, Cape Cod Community College, schools, Town Selectman, Councils on Aging, and other town/village programs

We also learned of a pending grant from a local philanthropy to support the tuition and travel expenses for five people to attend the Respecting Choices Train-the-Trainer program in La Crosse. The leaders agreed that I would head an LCC Training Team comprised of one representative from HPCCC, the Visiting Nurse Association, Alzheimer's Services of Cape Cod, and the Parish Nurse Ministry of Cape Cod. These team members would use the Respecting Choices curriculum for provider trainings on Cape Cod. Also, they would be viewed as champions and mentors of the project among their respective constituency groups.

By the end of the Executive Roundtable Meeting, it was clear that LCC would evolve as a coordinated and collaborative project with two distinct tracks. The consumer track would need to be broad enough in scope to offer diverse community education/outreach, yet sufficiently tailored to address ACP needs for one-on-one situations. The provider track would need to offer trainings that prepared participants to support the collaborative intent of the project, while also teaching them specific skills needed to integrate ACP at multiple levels across various settings.

Training the Trainers

Although, the members of the LCC Training Team believed in the concepts of LCC, they did not have previous experience with ACP beyond advance directives or the Respecting Choices program as I did. Yet, each embraced the opportunity to participate in the project and appeared eager to learn how we would employ the Respecting Choices model on Cape Cod. During the four-day training, we created an initial implementation plan, which included ideas for consumer outreach and provider training. This plan eventually formed the framework for tailoring the Respecting Choices curriculum to the needs of the LCC Collaborative. We arranged our calendars to meet monthly over the summer, with plans to hold our first two-day training in the fall of 2000. Before our first scheduled meeting, we each agreed to test our newly learned advance care planning facilitation skills by having at least two discussions—one with a loved one and the other with a person related to our respective work or constituency group.

Adapting the Respecting Choices model to community-building goals

The LCC Training Team met to discuss implementing our initial plan for consumer outreach and provider education. As we grappled with the scope of a community-wide initiative, we began to identify certain limitations in the Respecting Choices curriculum and model that would need modifications to address the consumer and provider tracks we envisioned. Respecting Choices, while implemented across different provider systems, is primarily geared toward training one-on-one facilitators working in settings where quality and outcomes can be monitored and measured internally. LCC, on the other hand, was created primarily to engage consumers in discussions about the value of life care planning within the context of the communities where they spend their time. The idea of training facilitators to go into the community to engage consumers in one-on-one ACP discussions seemed unrealistic and difficult to manage. Therefore, we imagined an inverted pyramid model with the five members of the LCC Training Team as the starting point. Each of us would invite five members of our respective constituency groups to the first training with the understanding that they would contribute as a team to the evolving plan for community outreach among that constituency. We also decided that all participants in the LCC Collaborators training would be asked to sign a Collaborator Statement supporting the goals and objectives of the project just as the Executive Roundtable members had done.

Simultaneously, momentum was building nationally and around the state for the upcoming PBS series, On Our Own Terms: Moyers on Dying, to be aired in September 2000—just one month prior to the first LCC Collaborators training. This was a community opportunity not to be missed. The LCC Training Team hosted a Community Conversations potluck dinner on the heels of the Moyers program. The dinner drew more than 60 people from the community, which provided a unique forum to introduce the emerging LCC project to an entirely new audience.

Although we recognized limitations in the Respecting Choices curriculum, we decided not to modify it substantially for the first training planned for October 2000. Instead, we included time in the training for the teams to provide input into how best to reach their constituencies. Each team was asked to develop an implementation plan for using the LCC training. The implementation plans were creative and reflected specific goals related to a given team's needs. For example, HPCCC trainees formed a LCC Project Team to review organizational policies and procedures related to advance directives. They conducted a pilot to test new guidelines for documenting and monitoring ACP conversations. The team from the Alzheimer's Association of Cape Cod & Islands decided to use ACP as an educational theme for 2001, and the Parish Nurse Ministry added ACP as a stand-alone module to their Parish Nurse Education and Training Program. Other participants identified specific community-based groups to address, such as civic organizations, school and church groups, and social clubs.

Focus of Future LCC Collaborator Training Takes Shape

By year's end of 2000, LCC was gaining momentum. The first training group offered many suggestions in their post-training evaluations on how to modify the curriculum for future trainings. Most participants felt there was too much dependence on the slide presentation for the didactic material. One participant, a former teacher, provided access to wonderful resources for addressing the diverse needs of adult learners. Many of the evaluations suggested more information be provided on the history of legal precedents and ethical issues associated with advance directives.

A second training was planned for May 2001. Teams from the first training were asked to identify potential invitees who could effectively continue the inverted pyramid model outreach strategy. The Respecting Choices curriculum continued to provide a solid foundation for teaching participants to integrate the knowledge, principles, and skills associated with ACP into encounters with their constituency group. However, our participants also needed to learn strategies for presenting LCC to diverse consumer groups in churches, schools, and other community-based gatherings. They needed to better understand their relationship to other LCC Collaborators, for collaborating with each other, and for fostering new champions to sustain the community-focused momentum. The one-on-one scenarios included in the Respecting Choices curriculum were not particularly useful to trainees unlikely to find themselves engaged in that type of encounter. Therefore, we modified the second training to include breakout presentations specific to the needs of the trainees and their respective teams. One session concentrated on strategies for talking to community-based groups about ACP; another offered advice on integrating the project into an organizational setting. We then provided a separate time for those needing to develop the specific skills for one-on-one facilitated discussions. Although this modification worked well, it added two to three hours to the overall training time, which proved burdensome to some participants and faculty. Despite the added time, post-training evaluations were overwhelmingly positive, and as with the first training, participants asked for more background information about legal and ethical precedents for the current perspectives on ACP.

Widening Public Awareness

Along with the LCC Collaborator trainings, an aggressive community outreach strategy was designed to inform consumers about ACP and the effective use of appropriate advance directive documents, including the Massachusetts-specific out-of-hospital Comfort Care/Do Not Resuscitate Protocol.¹⁹ Teams from the LCC trainings were encouraged to identify points of access within their constituency groups and their own intimate communities for LCC speaking engagements and workshops.

We decided to modify idea of the "Green Sleeve" (a translucent green plastic sheath that holds 8.5" x 11" paper) used in the La Crosse hospitals to hold ACP documents and place them prominently at the front of the chart. Again, we found ourselves moving along two distinct tracks with this modification. The provider track was working toward integrating the Green Sleeve as the first page of patient's charts in institutions and organizations across Cape Cod. While this has been a slow process, it is in place at HPCCC, at an assisted living residence for persons with memory impairment, and through an adult foster care program. For the consumer track, we created handouts using Green Sleeves for community presentations, workshops, and other outreach events where we have enough time to explain their use. These colorful plastic sleeves contain a Massachusetts Health Care Proxy Form and Information Booklet; a Making Choices brochure and planning guide; LCC FAQs, and a wallet card identifying a proxy contact and other important ACP information. Based on results from a LCC survey included in our local Alzheimer's Association newsletter, we knew that nearly 70 percent of respondents who reported having an advance directive document kept them stored in places that would be inaccessible when needed, such as a safe deposit box, with their attorney, or "tucked away in a safe place." Therefore, our outreach message included advice on distributing copies appropriately and on storing advance care plans, and other important information in the Green Sleeve. We suggested that they post the Green Sleeve on their refrigerator door or another visible location.

In November 2001, we launched the first annual month-long public awareness campaign to highlight the work of LCC Collaborators and to prepare consumers for Massachusetts Health Care Proxy Day on the day after Thanksgiving. In that month, 425 Green Sleeves were distributed across Cape Cod; 600 people attended various events, seminars, workshops, and even theatrical performances.²⁰ This campaign was held again in November 2002 to coincide with National Family Caregivers Month, National Hospice Month, National Alzheimer's Awareness Month, and Health Care Proxy Day.

We frequently measured the satisfaction of consumers with community presentations and consistently received very positive feedback. Many noted that they were pleased someone was bringing this important information to their attention. Without exception, in every group I have ever spoken to, people have had stories to tell about unfortunate experiences with the health care system. These stories run the gamut from health care providers not returning phone calls for days to ignoring previously stated wishes. Of significant concern are the misperceptions that exist among providers and consumers about our state's Comfort Care/Do Not Resuscitate Verification Protocol. Far too many consumers believe they have the documentation needed to avoid resuscitation attempts, yet they do not. These concerns have been shared with the Governor's Commission on End-of-Life Care and more recently, I wrote an issue brief on the topic for Governor Romney's Health Care Transition Team.

Contrary to the often-cited notion that consumers are reluctant to talk about issues related to ACP, illness, and caregiving, I have found them interactive, enthusiastic, and seemingly thirsty for the opportunity to talk and learn about ways to be better prepared for the unexpected, be more informed about anticipated issues, and have greater understanding of the possible outcomes of specific interventions. More important, most consumers appeared to value and appreciate learning how to explore the specific nature of their evolving needs as they face aging, changing health, or responsibility of caring for someone they love.

Uncovering and Responding to Unmet Needs

As the LCC outreach evolved, many people we met in community forums or through constituency groups were already living with the challenges of illness, aging, and/or caregiving and in need of immediate assistance with coordinating and planning care for themselves or a loved one. Often I was contacted directly by consumers who heard me speak or by fellow collaborators who needed assistance in managing these challenges for members of their constituency groups. The common missing link was a point of connection across providers to bring a consumer's articulated needs in sync with the resources available and to provide access to individualized anticipatory guidance for what lay ahead. Given my clinical background, experience, and comfort level with these issues, I found myself providing specialized ACP and one-on-one consultations to a growing number of consumers across Cape Cod. My knowledge of emerging national initiatives related to palliative care afforded me insight into possible practice models to meet the expanding need for more sophisticated interventions.

Community-based palliative care consultation service

After considering various options I developed a pilot project for a community-based palliative care consultation service at HPCCC that also uses the tools of the CAReTOGRAPHY model. This physician and nurse practitioner team offers one-on-one palliative care consultations to consumers, their loved ones, and their health care providers in any setting on Cape Cod. These consultations are designed to:

• Map the needs identified by consumers for community services and resources;
• Develop an enhanced ACP to reflect the consumer's preferences and values in keeping with their current and anticipated health and wellness status;
• Assess the need for symptom management, emotional, and spiritual support;
• Foster consumer education, self-management and involvement of those close to the consumer; and
• Create strategies for effective collaboration across the LCC Collaborator network, using the CAReTOGRAPHY framework.

The physician and/or advanced practice nurse collaborate with area physicians, health care organizations, human service agencies, and other community programs to coordinate and provide comprehensive interdisciplinary consultation for consumers and their loved ones living with illness. Often palliative care consultations involve collaboration and referral to various providers in the Cape Cod community who are already involved in the LCC Collaborative, thereby supporting the early concept of relational coordination across multiple community providers.

The Palliative Care Consultation program recently completed an analysis of its first two years, during which time 217 consultations were provided. Thirty-five percent of all referrals to the Palliative Care Program came directly from consumers (self-referral, referral by family and friends), suggesting a gap in existing services or a barrier to accessing the right mix of services. Thirty-seven percent of referrals came from a referrer within HPCCC (volunteers, referral center, clinical staff, decertified hospice patients). The balance of referrals (27 percent) came from a variety of professional sources on Cape Cod and in Boston.

Results of satisfaction surveys and interviews with palliative care consumers indicate that, although they often articulated a variety of needs, most needs clustered around three main issues:

• Coordination of care and finding the right services;
• Anticipation of what's ahead; and
• Relief from the stress and burden of caregiving, including the burden of decision making.

Fifty-three percent of all palliative care consultations involved consumers with a non-cancer diagnosis. These consumers were living with illnesses traditionally underserved by hospice programs due to the prognostic uncertainty of their diseases or inability to identify a 'terminal' diagnosis. The chronic yet insidious trajectory toward death associated with such conditions as neurodegenerative diseases, dementias, cardio-pulmonary disease, or just being very old leave the patient and their caregivers especially vulnerable to the fragmentation of the care system. Frequently, these consumers are connected to health care providers, such as their primary physician, but often lack adequate community-based services to meet their changing needs over time and lack access to specialized ACP to anticipate those needs. They may be eligible for traditional home care services only intermittently, as they present occasional skilled nursing needs. Yet, the needs they or their caregivers most frequently identify are related to coordination of care—anticipation of what may be ahead and help in managing the physical, financial, and emotional burdens of caregiving. It seems reasonable to suggest that these issues would have greater potential for identification if individualized ACP and collaboration were integrated as essential components of quality health care in all care settings at any stage of life.

Provider Outreach and Training Continues to Evolve

As LCC and the Palliative Care Consultation Service continue to emerge, the provider track continues to evolve. Along with consumer surveys and training evaluations, we collect data as a Respecting Choices National Participant. An annual activity report is submitted to Respecting Choices in La Crosse updating them on the Collaborative's work. Since the Executive Roundtable in March 2000, more than 100 LCC Collaborators have attended the 16-hour training, representing nearly 60 organizations and providers on Cape Cod. We have spoken to hundreds of consumer and provider groups and distributed close to 3,500 Green Sleeves.

During the summer of 2002, I worked with the recently hired LCC Coordinator to reevaluate the strategies for using the Respecting Choices curriculum in light of the evolving needs of our consumer-focused project. We reviewed the post-training evaluations from the first two trainings, paying close attention to participants' comments. We talked with Collaborators about how they were using the training and what they felt would enhance their work. Armed with this information and based on my experience in the previous two years speaking to hundreds of consumers and presenting to numerous local, state, and national groups, I felt we needed to reconstruct the curriculum to more accurately reflect the project's evolution.

As a result of this analysis, we substantially restructured the format of the third training. As in the previous two trainings, we used the Respecting Choices manual as a textbook, and some of the video segments to trigger discussion, because of the enduring quality of the material and its thoughtful presentation. We significantly altered the content of the 16-hour training to focus more explicitly on instructing participants on how to use the CAReTOGRAPHY model as a framework for implementing LCC in their organizations, and communities, or with individuals. During day one, we used a variety of teaching methods, starting with an experiential exercise called My Favorite Things. This exercise requires participants to identify five favorite things, and then give them up progressively over the course of the day, with time to reflect on the process at the end. It can be adapted to the available time.

We invited a nurse ethicist/attorney to present a historical overview of key legal cases that shape our current thinking about ethical and moral decision making and the power and limits of legal documents used in advance care planning. To give participants a better understanding of what a one-on-one facilitated advance care planning conversation can look like, we showed the La Crosse video featuring Dr. Hammes and Linda Briggs. While almost too perfect, this video is an excellent example of how the process can flow using the Respecting Choices methods. At the end of the day we gave the participants their own Green Sleeves with instructions to have a one-on-one LCC with someone close to them before the next training day the following week.

I wrote four scenarios based on real-life situations we had encountered in our community outreach that each focus on an adult at a different phase regarding health care needs: (1) a healthy adult, (2) an adult living with chronic illness, (3) a frail elder, and (4) an adult living with a life-limiting neurodegenerative disease. Instead of role-playing one-on-one ACP conversations, the breakout groups worked together to find points of potential collaboration, brainstormed about how to initiate a specialized ACP conversation specific to the presenting scenario, and finally considered how to reach the various community and constituency groups associated with the scenarios. A key component of this exercise was to illustrate the power of collaborating across providers to meet the evolving needs of each specific individual.

This third training flowed well and judging from the post-training evaluations was a valuable experience for the participants, who provided substantial comments about the multifaceted content. I facilitated most of the training, along with two other faculty. This number was more manageable than teaching with five as we had done for the first two trainings.

Challenges to Sustaining LifeCare Conversations

Funding

Sustaining innovative projects is always a challenge; it is even more difficult in today's economic climate. With the exception of a limited number of philanthropic grants, the Hospice Foundation of Cape Cod, the development arm of HPCCC, has fully supported the operational expenses associated with the LifeCare Conversations Collaborative. Recently, oversight of the consumer track shifted to the organization's Community Advisory Board (CAB) and Friends of Hospice under the Director of Community Relations, thus eliminating an in-house LCC coordinator position. Community outreach activities will continue through a LCC Collaborators Speakers Bureau and through Study Circles forming among faith-based groups. There are preliminary plans to convene diverse groups to discuss the recently published report Means to a Better End as a consumer awareness initiaitve.²¹ Additionally, HPCCC has received two separate grants to convene focus groups with the Brazilian community and with gay, lesbian, and transgendered persons later this year to introduce LCC and to seek input from participants on culturally appropriate outreach strategies. Creative funding sources are needed to support the ongoing work of the LCC Collaborative as a community resource.

Expanding the meaning of advance care planning

Funding aside, additional barriers to sustaining a collaborative, consumer-centered model of ACP are multifaceted and include individual, organizational, and system issues. There are misperceptions that ACP is about completing an advance directive—a barrier that may only be broken down with consistent use of appropriate vocabulary and language associated with ACP; that ACP is a discrete activity, which when completed is checked off a list of other discrete activities; that ACP is done by somebody else somewhere else in the system; that ACP takes too much time; and, that consumers have no interest in discussing issues related to ACP and end-of-life decision making. In addition, providers often seem genuinely perplexed by the concept of a cross-provider collaborative model for consumer-centered practice. We need to create demonstration models to test ideas and support mentors that providers can emulate.

In the end, the success of LCC may be best measured one consumer and one provider at a time. As organizations, agencies, and individual practitioners integrate ACP and the knowledge, skills, and behaviors they learn in LCC into their practice every time, over time, consumers will respond. Success also will depend on creating rigorous methods to test, measure, and analyze the outcomes related to community-based interventions to improve health care decision making across the lifespan.

Lessons Learned

Lesson 1: See the forest for the trees…but keep the trees in focus

Community-wide endeavors require big picture thinking, but it is essential to carefully consider the boundaries of a given community and the multiple communities embedded within the larger one. While Cape Cod is geographically contained and the boundaries may look obvious, many times the boundaries became blurred. Mapping tools are useful for deconstructing multilevel communities so as to recognize additional subgroups.

Lesson 2: Share the load…seek multiple kinds of support

Engage people from across the community early on—you'll need each other's energy and wisdom along the way. Keep in mind that each person brings his or her own unique constellation of communities from which you can draw new champions, collaborators, and support, both financial and in-kind. Local funding groups are great places to start and many times they are looking for new giving opportunities. Find champions who are comfortable asking for money and some who are skilled at writing proposals for grants.

Lesson 3: Test, measure, and evaluate outcomes…seek research help

Data is very valuable in monitoring the progress of any project. We have gathered data at trainings, presentations, and through surveys, yet we have struggled with integrating this evidence into meaningful reports to demonstrate the project's full effectiveness to date. We need to take time to evaluate the initial measures in aggregate to see how the picture is evolving. LCC was not spawned as a research project; rather its idea is homegrown, its foundation grassroots, and its principles formed from the experiences, knowledge, and skills I have gained over nearly two decades through access to academic, research, and clinical mentors. LCC is largely the product of what I've learned from my most valuable teachers: the patients, their loved ones, and other consumers who afford me the privilege of listening to their stories in the communities where they live. When considering a community-based project such as LCC, it would be wise to engage the interest of a qualitative researcher to help frame questions and measures that describe the work and the outcomes clearly and effectively.

Lesson 4: Go where consumers gather…know your audience…talk their language

Creating a venue that attracts consumers to talk about ACP and associated issues such as illness, aging and end-of-life care is challenging. Look for existing groups with regularly scheduled meetings, such as adult education, support groups, civic organizations, business networking groups, and other special interest groups. Our most successful outreach activities were with audiences that shared a common interest and gathered for purposes other than discussing ACP or end-of-life issues. Be ready to address ACP from a specific group's perspective, including attention to cultural and religious preferences. Too often, initiatives directed toward consumers look and sound much like the professionals that create them. Know your audience and tailor your message appropriately. Using a consistent theme creates an identity that is consumer-friendly. Finding a life-affirming name avoids negative perceptions of death and dying. Even a tool, such as the Green Sleeve, can create a positive and visual identity. While we are a long way from having the Green Sleeve as the first page of every patient's chart across all care settings, the word is becoming a proper noun in our community. I especially enjoy the times when I'm introducing the Green Sleeve to an audience and someone tells me, "I already have a Green Sleeve on my refrigerator."

Conclusion

Building a new model requires time, diverse skills, and money. Building a new model also requires that we visualize, if only momentarily, an ideal world. In an ideal world, our health care system would be focused on individualized needs in the context of what patients and families value and hold dear, every time, in every setting. In an ideal world, consumers with chronic, long-term illnesses would have adequate coverage for the interdisciplinary support needed to live as well as possible with their changing and often declining conditions. In an ideal world, consumers with serious life-limiting illnesses would be offered access to palliative care specialists at the time of diagnosis as part of a comprehensive team that integrates institutional and community resources. In an ideal world, clinical, political, and policy agendas would be guided by the needs of our most vulnerable citizens to build a model of care that is responsive and accountable to them.

The work described in this article is in large part the result of many years of contemplating a "better mousetrap" for the many people I have known and cared for; people for whom the health care system did not quite fit; people who face the challenges of living each day sick enough to die—yet the time to death is not easily gauged. It is with this group of people that I have felt my greatest frustrations with a system that leaves them, their loved ones, and their providers ill-prepared for inevitable outcomes. If we can improve the communication and life care planning earlier in the lifespan, each of one of us will become more experienced with balancing important health-related decisions, including those near the end of life.

Acknowledgments

The development and launch of LifeCare Conversations and the Community Palliative Care Program have come from a collective effort of many colleagues both inside and outside Hospice & Palliative Care of Cape Cod, with additional funding from the Kelley Foundation, Community Foundation of Cape Cod, Kenneth B. Schwartz Center, and other interested community members. Special appreciation goes to Mary McCarthy, Marilyn Hannus, and volunteers and members of the Board of Directors of HPCCC. This article is dedicated to Kathleen Cumming, Allen Ward, Jeanne Maloney, Barbara Edgar, and Karyn Kuhn, an incredible team of professionals whose endless curiosity and respect for new ideas fostered the evolution of CAReTOGRAPHY, and the creation of LifeCare Conversations® and the Community Palliative Care Program. As always, special thanks Scott, Alla, and Lena—my very own intimate community!

References:

1. Callahan JJ. Experts answer five critical questions about integration of care. Integration of Care in a Changing Environment. Summer 1999. [Return to Featured Innovation]

2. Hammes B, Romer AL. The lessons from Respecting Your Choices: An interview with Bernard Hammes. Innovations in End-of-Life Care, 1999;1(1) www.edc.org/lastacts/archives/archivesJan99/printfeatureinn1(1).pdf.[Return to Featured Innovation]

3. Herzlinger R. Market-driven Health Care: Who Wins and Who Loses in the Transformation of America's Largest Service Industry. Reading, MA: Addison-Wesley, 1998. [Return to Featured Innovation]

4. Last Acts Palliative Care Task Force. Precepts of Palliative Care. Washington, DC: Last Acts, 1997. Available at www.lastacts.org/docs/profprecepts.pdf. [Return to Featured Innovation]

5. Gittell JH, Fairfield KM, Bierbaum B, Head W, Jackson R, Kelly M, Laskin R, Lipson S, Siliski J, Thornhill T, Zuckerman J. Impact of relational coordination on quality care, post operative pain and functioning and the length of stay: A nine hospital study. Medical Care. 2000;38:807-808. [Return to Featured Innovation]

6. Gittell JH, Weiss L. Coordination networks within and across organizations: a multi-level framework. Journal of Management Studies, 2004;41(5). [Return to Featured Innovation]

7. Gittell JH. Relationships between service providers and their impact on customers. Journal of Science Research. 2002;4(4):299-311. [Return to Featured Innovation]

8. Provan KG, Milward HB. A preliminary theory of inter-organizational network effectiveness: A comparative study of four community mental health systems. Administrative Science Quarterly. 1995;40:1-33. [Return to Featured Innovation]

9. Hammes BJ, Rooney BL. Death and end of life planning in one midwestern community. Archives of Internal Medicine. 1998;158:383-390. [Return to Featured Innovation]

10. Teno JM, Lynn J. Putting advance care planning into action. Journal of Clinical Ethics, 1996;7(3):205-213. [Return to Featured Innovation]

11. Forrow L. The green ham and eggs phenomena. Hastings Center Report. 1994;24(6 Suppl.):29-32. [Return to Featured Innovation]

12. American Health Decisions. The quest to die with dignity: An anaylsis of American values, opinions and attitudes concerning end of life care. Report. Atlanta, GA: American Health Decisions, 1997. [Return to Featured Innovation]

13. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). A controlled trial to improve care for seriously ill hospitalized patients. Journal of the American Medical Association. 1995;274:1591-1597. [Return to Featured Innovation]

14. Institute of Medicine. Field MJ, Cassel CK, (eds.). Approaching Death: Improving Care at the End of Life. Washington, DC: National Academy Press, 1997. [Return to Featured Innovation]

15. Hammes B, Romer AL, 1999. www.edc.org/lastacts/archives/archivesJan99/printfeatureinn1(1).pdf. [Return to Featured Innovation]

16. Hammes BJ, Bottner W, Lapham C. Expanding Frames ... Opening Choices: reconsidering conversations about medical care when cure is not possible. Illness, Crisis & Loss. 1999;6(4):352-356. [Return to Featured Innovation]

17. Billings JA. What is palliative care? Journal of Palliative Medicine. 1998;1(1):73-81. [Return to Featured Innovation]

18. Hammes B, Romer AL, 1999, www.edc.org/lastacts/archives/archivesJan99/printfeatureinn1(1).pdf. [Return to Featured Innovation]

19. Massachusetts Department of Public Office of Emergency Medical Services Comfort Care/Do Not Resuscitate (DNR) Order Verification Program www.state.ma.us/dph/oems/ccare.htm. [Return to Featured Innovation]

20. A dramatic reading entitled Vesta, a play by Bryan Harnetiux, now licensed through the Life's End Institute at the Missoula Demonstration Project. [Return to Featured Innovation]

21. Means to a better end: A report on dying in America. Washington, DC: Last Acts, 2002. Available at www.lastacts.org. [Return to Featured Innovation]