“Her resources and income were so limited she could not pay for her medications. There was little or no food in the house, and she was behind in her rent payments. With the services of the CALL Care study, she was connected with Catholic Social Services. We assisted her in applying for Medicaid, which was approved, and her medications now cost her one dollar. She received support to pay her delinquent rent payment and was given Meals on Wheels five days a week and supplemental food from Focus Hope. A caregiver was arranged for 20 hours per week to assist with household chores or transportation to doctor appointments. An emergency call system was given to Mary, and she feels safer. Medical equipment such as a walker, wheelchair, and diabetes monitoring were provided. Contact with a local parish has provided assistance with her laundry and will provide transportation to church services.

“Mary would not allow our team to pursue assistance for her son. This issue is addressed at each visit, and she continues to decline. Her other sons who live out of state were contacted and are more involved in her care. She has visited one, and the other son has come to her home. She will need extended care, and arrangements will be made for her to live near one son and to have the mentally challenged brother cared for by the other son.

“Mary is an example of how the process we followed using the CALL Care approach enhances quality of life. It involved working with community-based, physician-based, and hospital-based resources. It addressed needs such as medication assistance and assistance in dealing with complex drug forms, which are often not supported by existing health structures.”

*Name and some details changed to protect confidentiality.

INTRODUCTION

Mary’s case is typical only in that it illustrates the unique circumstances each individual brings to the complex experience of life, serious illness, and approaching death. Her situation—and her health care team’s response to it—speak to the strengths of a new approach to end-of-life care, CALL Care (Comprehensive, Adaptable, Life-Affirming, Longitudinal Care). This innovative demonstration project explored models for seamless integration of services across the spectrum of health care services from the time an illness appears to be life threatening through death and bereavement.

Through CALL Care, Mary’s care was focused on the person—not the disease. As the end of life approaches, needs can be very complex and not all are the result of the disease or illness. In Mary’s case, a team representing many disciplines provided interventions to address physical needs, psychosocial/relationship needs, and spiritual needs. While focusing on Mary’s complex needs assisted her to live more fully, the team members did not alter the presence of the illnesses that will inevitably lead to her death. They did enhance the quality of her life.

The Genesis of the CALL Care Project
The CALL Care project is a natural extension of earlier focus group research, Living and Healing During Life-Threatening Illness (1997). One outcome of that research was the confirmation that patients and families experienced the journey from life into death differently than did their health care providers. From the perspective of health care providers, illness and approaching death were seen as three distinct phases that encompass the experience: diagnosis, treatment, and comfort care. (See figure below.) From the perspective of the patient and family, however, illness and approaching death are embedded in the larger context of living life fully within the community. Health care thinks of itself as providing continuity and coordinated care. But, in fact, the traditional health care approach is episodic. Between visits to the health care provider’s office, life happens. These differing perspectives can lead to communication disconnects and competing goals.

It is understandable that health care providers focus on this vulnerable time from the perspective of our health care organizations and our existing services—until we or someone we love face life-threatening illness. Then we quickly learn the critical importance of coordinated continuity of care, care that focuses on the person whose life is changed by the illness or decline. This person’s needs are inclusive of excellent medical care and symptom management—but are so much greater. The affected persons and their families need to receive assistance that enables them to live life fully even as death approaches.

While hospice care has made a significant improvement in the delivery of health care services at the end of life, there are still many ways our current system falls short. Persons who could or should be referred to hospice are not. Referrals come woefully late. For the person with life-threatening illness, serious problems requiring assistance arise long before a hospice referral is appropriate. Palliative care teams, another excellent resource, tend to be hospital-based. Their scope is limited and not intended to address the full array of problems of living with life-threatening illness. Among the persons who may be inadequately served by existing structures is the individual without family support, who is at risk of extreme isolation as decline accelerates. Persons with poorly managed serious illnesses pose another challenge. Not infrequently, they receive crisis care in the emergency department or are admitted to hospital intensive care units at great expense to families and health systems.

CALL Care is specifically designed to serve those whose needs are not fully addressed by existing health care structures. This 18-month project examined the challenges of providing continuity of care and coordination of services for those with life-threatening illnesses, identified gaps in service, and created links between services to better meet the needs of patients and families. Several assumptions guided the development of the project:

• That participating sites should begin with an assessment of the system’s existing strengths and limitations, programs, and resources
• That the goal was not necessarily the development of new services but better utilization of and linkages between existing services
• That the presence of physician and administrative “champions” on site was integral to project success
• That although the project would take different forms from site to site because of differences in existing site resources, processes for identifying and enrolling patients, domains of service, and data obtained should be consistent across sites
• That each site would require a coordinator who would establish a relationship with the patient and family and serve as their advocate while connecting them to services within the health system and community to address unmet needs
• That patient and family needs would be best met by an interdisciplinary team
• That a mechanism was needed for identifying the patient’s/family’s perception of needs

Project Funding
Funding for the project was provided by a grant from the Robert Wood Johnson Foundation through the Promoting Excellence National Program Office and Supportive Care of the Dying: A Coalition for Compassionate Care (the Coalition) with additional support from individual participating sites. The project was initiated in August 2001 and completed in February 2003.

CALL Care Illuminated
CALL Care encouraged team members to think creatively, respond to the real-life needs and problems of their patients, and broaden their conception of what a truly responsive health care system can accomplish. Some brief comments from actual cases serve to illustrate the many ways in which CALL Care made a difference. The often touching stories of CALL Care providers and patients are testimony to the ability of ordinary people to accomplish extraordinary things.

Care is COMPREHENSIVE: Focus of services includes strategies to meet physical, emotional, spiritual, and relationship needs. Services are designed for both the ill person and family caregiver, as defined by the ill person.

“We have one patient who is a 55-year-old woman with advanced cancer. Her daughter is pregnant, and the patient really wanted to be there for the birth of her grandchild so she could hold it. It became clear she would not live that long. One member of the team went to OB and asked if they could do an ultrasound so she could see her grandbaby. The nurse and an OB physician came over on their lunch break. The grandma held her daughter while they did the ultrasound and showed her the baby, its fingers and toes, and other features. She was able to hold both her daughter and the grandbaby. She ‘saw’ the baby. It was beautiful!”

Peg Nelson, RN, MSN
Director of Clinical Health Initiatives
St. Joseph Mercy Oakland, Pontiac, MI

Care is ADAPTABLE: Care and services are flexible over time for the person and caregiver. The approach focuses on linking appropriate existing services, developing new services only when gaps in continuity of services between the community and health care organizations are evident. Services should be accessible within the context of a variety of funding or reimbursement scenarios.

“I have one patient I only contact and hear from by e-mail. I get an e-mail from him and figure out how to address his concerns or problems. I e-mail him the answers and then I never hear back until another situation occurs. I know that he depends on our connection to get his care needs met. Also, I don’t worry about him because I know he will contact me if he needs any assistance. We have that kind of relationship.”

Bonnie Patrick, MSW
Social Worker
Providence Hospital and Medical Centers,
Southfield, MI

Care is LIFE-AFFIRMING: Although persons identified for the CALL Care program are likely to be facing the last phase of their life, the services focus on assisting the person and family caregivers to live fully and meaningfully within the limits of the illness and each person’s goals.

“One patient has severe anxiety attacks when leaving the house. I was able to work with him to take his medicine before he left so he was more comfortable being out. Also, he was very alone, so our chaplain reached out to him. They have become friends, and they actually went golfing. This man loved golfing and had not been able to go for more than a year.”

Michelle Sparling, RN
Palliative Care Coordinator (CALL Care)
Providence Hospital and Medical Centers, Southfield, MI

Care is LONGITUDINAL: Program plans are designed to identify persons for whom illness is progressive and will potentially lead to the person’s death. The selection criteria focuses from the time an illness is identified as life threatening, even if prognosis or life expectancy is unknown. This strategy addresses problems associated with timely referrals to end-of-life services and programs.

“I followed one patient as she was hospitalized in three different hospitals and health organizations within a year. The son would call me with each change. In a couple of situations, I was able to offer suggestions that improved her level of comfort because I knew her so well. Her doctor lost track, and I was able to keep him up to date. At the end, the son called me to be with him as he made the decision on behalf of his mother to discontinue the ventilator.”

Michelle Sparling, RN
Palliative Care Coordinator (CALL Care)
Providence Hospital and Medical Centers, Southfield, MI

The care needs of the ill person and the family may require that we think outside the usual boundaries of health care and extend into the community, for this is where patients and family are living with their illness, and approaching death and bereavement.

CALL Care was implemented in 11 sites across the United States. Sites selected to participate had indicated a deep commitment to excellence in care for those with life-threatening illnesses. Some already had strong palliative care teams and services. Others did not. CALL Care services were based in urban and rural acute care, long-term care, and physician practices. Regardless of where the services were based, all sites provided services that reached across traditional boundaries to provide the continuity of care needed by the seriously ill patients and their families. The key to success at all sites was a focus on the person being served and not on the structure and limits of current services. Many patients and families were visited in their homes or at clinical appointments as part of the program. While each site developed its approach congruent with its strengths and culture, there was consistency across all sites in who was served and how services and outcomes were evaluated. Thus, CALL Care was conceptualized and designed to build on organizational and community strengths in providing end-of-life care.

Implementation of the project in each community:

• Built on existing local initiatives and community strengths
• Required development of strategies to identify those for whom the services would be beneficial
• Created a fabric of comprehensive, continuous, and adaptable life-affirming services and supports
• Measured effectiveness of programs and services using consistent measurement methods and tools, thus allowing for comparisons across project sites

Services and Care Needs Addressed
At each of the 11 sites, specific patient services were provided in conjunction with existing community organizations. Sites did not necessarily need to develop new services. Some did need to broaden their working relationships with other agencies. The scope of services available to the patient and family needed to encompass the same domains across all sites. They were:

• Holistic approach to patient care including assessment and treatment of discomfort in all symptom areas, psycho/social assessment and counseling and/or support, and spiritual assessment and support
• Care management/care coordination
• Interdisciplinary care team including patient/family
• Palliative care, pain-management, and symptom-management services
• Patient/family education on health system, illness treatment and symptoms, caregiving, and approaching death
• Advance care planning including assessment of life goals
• Communication of patient preferences, values, and care needs across the continuum of care
• Access to medication-assistance programs
• Other needed services (homemaker services, personal aide, etc.)
• Family support throughout caregiving and bereavement including respite and long-term support during bereavement

Having these services available and accessible was sometimes a challenge and required the creative intervention of the team and care coordinator.

IMPLEMENTATION EXPERIENCES
Using this CALL Care model, the 11 sites formed teams to evaluate the availability of end-of-life services at their facilities. They then developed and implemented plans for improving the services offered and the coordination of those offerings.

In the Beginning
Each demonstration site started by forming a steering committee or palliative care committee or by working with an existing group such as an ethics or pain-management committee. Next they completed a self-assessment of their organization’s strengths using the Coalition-developed system-assessment tool. Using the tool, interdisciplinary teams identified existing strengths within their organization and then examined the disparity between existing strengths and the vision of services exemplified by CALL Care. The assessment was enriched by the participation of individuals representing various professional disciplines and roles. Direct care providers, administrative and medical staff leaders, and others with knowledge of the organization and expertise in palliative care contributed their perspectives.

Key Players
The committees identified administrative and physician champions. At many sites, the administrative champion was the vice president for mission and ministry, pastoral care, or patient care services. Effective champions evinced a passion for improving care of those with life-threatening illnesses, leadership skills, and knowledge of the organization they were seeking to change.

Having effective champions on site did seem to influence the evolution of the project. Sites that struggled most to be successful did not identify the physician champion prior to implementing the program and thus had more difficulty obtaining referrals and making the program visible within the organization.

A coordinator was identified or employed. The coordinator in some sites was a nurse, in others, a chaplain or a social worker. The coordinators were members of the care team and in some cases were also the person providing clinical services. The appropriate professional background for the coordinator is a matter of organization culture; there are pros and cons attached to each of these disciplines.

It was easier to begin the program when the coordinator was an already respected member of the team and well known in the institution. When the coordinator was new to the organization, the first challenge was establishing relationships with the physicians and nursing staff and learning “how we do things here.”

Importance of the Interdisciplinary Team
Regardless of the discipline of the coordinator, working with the other team members in a very active way was critical. The strength of the interdisciplinary team cannot be overstated. Many of us think of ourselves as working within interdisciplinary teams, but often what that means is having a brief face-to-face consultation at the nursing station or in the hallway or, worse, communicating via progress notes only. Programs were most successful when there was at least a one-hour -per-week team meeting where care of specific patients was discussed, plans developed or modified, and input received from all who knew the patient and family. During those meetings, the priorities of care for the patient and family sometimes needed to be modified, occasionally even resulting in a decision to change the person leading the team intervention. These meetings also served to mentor team members and other participants. As one physician said,

“We always had good social workers, nurses, doctors, chaplains, and therapists. But, when we sat down as a team, we really saw improvement in the care we provided and an increase in our service.”

Dr. Steven Klein
Director, Hospice and Palliative Care Services
Providence Hospital and Medical Centers, Southfield, MI 

Educating the Health Care Team
Once the champions and coordinator were identified, there began an intensive process for informing and educating medical staff and other staff about the program and its goals. One of the major challenges was distinguishing CALL Care services as different from and an extension of the inpatient palliative care services and as a precursor to hospice care for those likely to ultimately transition to hospice care.

Prior to this intensive educational outreach, CALL Care programs received referrals very late in the patient’s illness process. Referrals were made for symptom management as death approached or for assistance in accessing hospice. While this was not the purpose of the project, the needs were so great for this population of very ill patients and families that coordinators provided services but did not enroll the person in the CALL Care project.

Enrolling Patients
Recruitment of patients and their families was complex and required the commitment of both the physician champion and the CALL Care coordinator—whether a nurse, chaplain, or social worker. In conjunction with interdisciplinary team meetings and education of staff members, there was an intensive period of “rounding,” or patient review, to help staff identify those who would benefit from the service.

Some sites required a physician order prior to seeing a patient; others required a physician indication of support for the services after the coordinator had consulted with the nursing staff about the care needs of the person and family. All site coordinators worked in a supportive relationship with existing care managers and discharge planners. Typically, referrals were made to address very complex care needs for which the patient and family did not meet the criteria to receive existing services, such as home health or hospice. In some sites, the care coordinators connected with existing disease-specific outpatient programs and offered services for the patients and their families. At other sites, quality-management staff identified the patients as theyreviewed admission diagnosis information. In follow-up, the care coordinator sought out the attending physician for confirmation of the appropriateness of approaching the identified patient.

CALL Care was designed to meet the needs of patients who were not yet appropriate candidates for hospice services and who were likely to live at least a few more months. Participants enrolled in CALL Care services had either advanced heart or respiratory illness, advanced cancer, or advanced dementia. 

As every health provider knows, predicting the timing of death is very difficult. Although inclusion criteria were designed to identify those most likely to be approaching the end of their lives but not actively dying, predictions were often off the mark.Some patients enrolled in CALL Care continue to live fully in the community a year or more after they entered the program. Others died “suddenly” after they had been enrolled in the demonstration project. Still others were assessed as needing immediate referral to hospice.

In the many instances in which patients and families needed assistance while not falling within the parameters of CALL Care, coordinators acted to get them the services they needed. The services reported here, therefore, underrepresent the full impact of CALL Care within each site as the data presented here does not reflect services to this population. Approximately 300 patients (45 percent of those approached) were enrolled during the 18-month period. Over 680 patients were approached; 15 percent of these patients were referred directly to hospice. Others declined to participate, citing reasons of progression of illness or the burden of completing the survey. At one site, 50 percent of those approached were discharged from the hospital or transferred to intensive care before they could be enrolled in the project and services.

“Often I would go visit the patient and family, and it would be apparent that hospice services were the right services for them. I was able to bring up hospice during a visit.”

Mary Pat Harper, RN
Care Coordinator
Sacred Heart Medical Center,
PeaceHealth-Oregon Region, Eugene, OR

CHALLENGES
With any new project, challenges arise during implementation. Many of the challenges that the CALL Care sites encountered dealt with the logistics of identifying and enrolling service recipients.

Barriers to Enrolling Participants
The “D” word
It is important to note that discomfort with the very words “death” or “dying” were a barrier to successful implementation in several sites. Even the Coalition name, Supportive Care of the Dying: A Coalition for Compassionate Care, had to be modified at several sites before permission was given to implement the program. The name, which appears on the assessment tools, was modified to Supportive Care Coalition or Supportive Care: A Coalition for Compassionate Care. Once those changes were made, the project was approved.

This discomfort extended to some coordinators and providers. Once coordinators became more comfortable and could normalize the discussion about possible death, they became more successful as they educated others and approached patients.

Obtaining Informed Consent
Because it was a research project, CALL Care required an informed consent letter and, at some sites, a signed informed consent. Informed consents are written to ensure the person is legally and fully informed of risks and benefits and the actual process of participation. Having said that, informed consents may be long and may not be user friendly. Because continuing or new CALL Care models will not fall under the constraints of research protocols, the enrollment information can be tailored to the information needs of the person and family as opposed to the organization’s Institutional Review Board for research projects. In fact, the consent for service signed as patients are admitted to a hospital, home health, or other care site may be sufficient to cover the consent for expanded services of the CALL Care type. This will depend on the decisions and recommendations of each site. This project was completed prior to implementation of new HIPAA regulations. Future projects will require a HIPAA review.

The Data Collection
CALL Care was a demonstration project with a quasi research methodology. It could accurately be described as a quality-improvement project where data were collected in a similar way at all sites. It was not possible to have complete control of data collection at 11 sites with very different programs and strengths. However, data collection was structured to be completed as follows:

Organization: The interdisciplinary team performed a self-evaluation using the system-assessment tool as described above. At the end of the project, a reassessment was done using the tool.

Patient: Once enrolled in the study using an informed-consent process, patients were asked to complete a Modified City of Hope patient questionnaire. Originally developed by the City of Hope National Medical Center, Duarte, CA, and later modified, these questionnaires ask patients and families to respond to questions about their experiences in physical, emotional/relational, and spiritual areas of their lives as well as their experiences with the health care system. This survey tool can be accessed on the Coalition’s website. The most successful sites treated the questionnaire as part of the total assessment of the person and family and used the information to dialogue about goals of care and issues raised by the person. It is a comprehensive approach and helps the coordinator know the person and identify possible care needs in a systematic manner.

Coordinators also developed narratives of patient needs based on their interactions with the patient, family, and other health care providers. Integrating the responses on the survey and the narratives, coordinators facilitated the services needed. At one month, three months, and every three months thereafter, patients were asked at a minimum to complete the physical domain sub-scale of the questionnaire. (The tool is divided into sub-sections and can be used on subsequent interactions to track changes in status.) The entire comprehensive tool need not be used at one time after the initial enrollment.

Follow-up with patients was required at least at the intervals referred to above and more often as care needs were identified. Follow-up could be in person; by phone; or, in one creative instance, at the patient’s request by e-mail.

Family: Family caregivers of patients who were unable to complete the questionnaires were asked to complete them as surrogate for the patient. Additionally, six to 12 weeks after the death of the loved one, the Modified City of Hope Bereaved Questionnaire was sent to family members for completion. The Bereaved Questionnaire is very similar to the patient version.

The importance of follow-up with the bereaved family member is critical. One’s last memory of a loved one is of the period just prior to and at the time of death. The evidence of success of care provided is found in the memory of bereaved family members as they recall the illness experience of their loved one during the last weeks of life. Our care and its results can provide comfort or contribute to suffering of the surviving family.

Care Coordinator: The care coordinator provided data on the actual services used by the patient and family during each time frame. A data tool was designed and used across all sites.

Barriers to Data Collection
Because coordinators often were dealing with very ill people, the very act of having to complete a questionnaire was in itself a barrier. Some sites collected the data as part of the interview; others mailed the questionnaire to people after they left thehospital; and others left the forms at the person’s bedside. In the long-term care site, where enrolled patients often were unable to complete the questionnaires themselves, family members were reluctant to answer the questions on behalf of their loved ones. They felt they could not know how much their loved one with dementia was experiencing pain, difficulty breathing, or other emotional/relational and spiritual conditions. All methods were challenging. Interviews took face-to-face time, but getting people to mail back forms required much time and follow-up.

OUTCOMES
The results of the CALL Care project at the program sites were assessed in both qualitative and quantitative terms.

Narratives of Success
Outcomes were described from several perspectives. We asked the patients and their family members about their illness experience and experience with health care. We also tracked the services provided to those enrolled. One patient said,

“In the year before this program, I had three hospitalizations. Two times I almost died due to a miscommunication between my doctor and me. Since (care coordinator’s name), I have had not crises or been in the hospital. If I have any questions, I just call (her) and she gets me my answer.”

Vicki
Patient
Sacred Heart Medical Center,
PeaceHealth - Oregon Region, Eugene, OR

We also asked about patients who were enrolled and those who died or were transferred to hospice. A physician commented,

“I don’t know about the data as a whole, but about 50 percent of our patients were referred to hospice for ongoing care. That is pretty remarkable.”

Dr. Al Brady
Director of Oncology/Palliative Services
St. Joseph Mercy Oakland, Pontiac, MI

From the organizations’ perspective, we asked for the self-report about the system’s development of services and about cost avoidance because of CALL Care services. Cost-avoidance data were calculated by tracking services utilized and discussing average dollars not utilized for inappropriate care. An example of this is the following:

“None of those on CALL Care who died had an attempted resuscitation, and only one person had an intensive care stay as a result of an unexpected outcome of an elective surgery. These were appropriate care decisions and did help avoid expensive care and care that was not likely to be successful.”

Dr. Al Brady
Director of Oncology/Palliative Services
St. Joseph Mercy Oakland, Pontiac, MI

The feedback from the sites about CALL Care was generally—but not universally—very positive. At one site, physicians said,

“This has been very positive for the patient, the family, and the primary care physicians. I have only heard good things.”

Dr. Ernest Yoder
Chairperson, Internal Medicine
Providence Hospital and Medical Centers, Southfield, MI

“This has been an important service. Now, when I tell patients about their cancer and the treatment, I also refer them to the CALL Care services for the supportive care they need. It has made a difference in my practice.”

Anonymous Physician
Providence Hospital and Medical Centers, Southfield, MI

Sites with less than positive feedback commented about the barriers of

• Obtaining informed consent
• Serving patients with other diagnoses
• Process of obtaining longitudinal data
• Patients and families who refused services
• Obtaining feedback from family members as surrogate responders when the patient was communicatively impaired and lived away from the family

These barriers were addressed during the project by reminding all that the first priority was to provide the service to patients and that the data should be considered integral to patient assessment. Data were, however, secondary to the service.

Incidentally, at two sites, the “research” nature of the study motivated individuals to participate, and at another site, this factor made it very difficult to recruit participants.

Quantitative Results
This summary will only provide a sample of information about the outcomes for those who participated in CALL Care. For a more complete analysis of the data, the reader is encouraged to obtain a copy of the full Life Affirming Care - Lessons in Healing report.

Organizational Data
The System Assessment form was completed by interdisciplinary committees at each site prior to beginning the project and at the completion of the project. This form can be accessed on the Coalition’s website. In 12 of the 13 categories—which included 98 self-scored individual items—sites indicated that more of the infrastructure supportive of excellence in end-of-life care had been implemented and had improved in its effectiveness. The increase in effectiveness from pre- assessment to post-assessment ranged from a 0.1 to a 5.5 increase. The average increase in self-reported effectiveness of the organizations’ infrastructure during the time of the project was 2.2 points. Results presented in the table are a summary of the scores at the completion of the project. (See chart below.)

Although the reports indicated an improvement in the effectiveness of the organization structure, any area reported as less than 80 percent effective provides an opportunity for additional improvement. Where items were rated as less than 80 percent effective, sites might see an opportunity for quality improvement by asking why the item is rated less than 80 percent and what it would take to improve the rating of the item if appropriate. For example, bereavement support standards are reported as 6.2. Is this because the support offered is not accepted, because the support is not available, or because the support is available in the community and is therefore not needed within the organization? This can only be answered by those most knowledgeable of the community and organization.

At the completion of the project, sites also were asked how fully they had implemented services. Sites were expected to have available for patients and families enrolled in CALL Care a comprehensive array of services as listed in the Implementation of Services chart below.

• Holistic approach to patient care including assessment and treatment of discomfort in all symptom areas, psycho/social assessment and counseling and/or support, and spiritual assessment and support
• Care management/care coordination
• Interdisciplinary care team including patient/family
• Palliative care, pain-management, and symptom-management services
• Patient/family education on health system, illness treatment and symptoms, caregiving, and approaching death
• Advance care planning including assessment of life goals
• Communication of patient preferences, values, and care needs across the continuum of care
• Access to medication-assistance programs
• Other needed services (homemaker services, personal aide, etc.)
• Family support throughout caregiving and bereavement including respite and long-term support during bereavement

On a scale of 1 (for just beginning) to 10 (for fully implemented and available), sites rated themselves very well. The average ranged from a low average of 6.3 for family/caregiver respite services (range 0-10) to a high of 9.6 for a holistic approach to patient care (range 8-10). The overall average for implementing the availability of the services was 8.2 (range 6.3-9.6).

Note that while these services are rated as being implemented and available, the question remains about the extent to which the services were provided. Also, it would seem that a goal of 80 percent availability or implementation of services would seem appropriate for this vulnerable population. Thus, any service rated at less than 80 percent could be a candidate for a quality-improvement initiative.

For example, positive results for implementing advance care planning services were specifically described by CALL Care participating sites:

“In addition to offering ongoing education to community groups, GSHC collaborates with other agencies to assure someone is available at the hospital every Thursday to assist those interested in completing their Directive. During a one-week monitoring period, 70 percent of the acute care patients registered in the hospital had Advance Directives on file.”

Judith Buchler
Vice President, Patient Care Services
Good Samaritan Health Center of Merrill, Merrill, WI 

Patient and Family Data
Services Received by Participants
The above self-report data provides some insight into the services that were available for participants, but it does not answer the question about services provided to participants in the CALL Care project. It also does not answer the question about services needed. To fully understand the availability and effectiveness of services or organizational infrastructure, the experience and perspective of the patient and family need to be understood.

Participants received a full range of services as described above, but not all participants received all services. Although sites reported a high rate of implementation of services, it was interesting that the rate of services provided to CALL Care participants ranged from 68 percent for symptom management to 22 percent for medication assistance. The question could be asked if this was due to services not being needed or due to the availability and visibility of services. This discrepancy provides an opportunity for further exploration.

Participants
Participants in this program were primarily white, Medicare age, lower income, living at home, and female.

These statistics are consistent with expected demographics for this population with the diagnoses and admission criteria as defined.

Pain Rating
For this population, data indicating successful pain management was very strong.

The baseline is very similar to the mean pain rating of 4.39 when the Modified City of Hope Patient Questionnaire was administered in 1999.

Important also was the improvement over time in the number reporting their pain at a 0-3 level and the decrease over time in those reporting pain at the 7-10 level. Of those who returned questionnaires, those reporting 0- 3 changed from 32 percent to 56 percent, and those reporting 7-10 changed from 38 percent to 20 percent. This indicates a trend but may also reflect the bias of those who were well enough to respond or chose to respond. Still, participants had progressive illness and at a minimum experienced no worse pain over time.

Hospital Experiences
Of the progressively ill participants receiving CALL Care services, only 29 percent had any inpatient hospital stays and an additional 7 percent had critical care admissions. While we don’t have comparison data for those 65 or over by diagnosis, the Means to a Better End (MTBE) report indicates that 3.4 percent to 17.3 percent (mean 10.1 percent) of Medicare participants who died had critical care stays greater than seven days during the last six months of life. Also, Lubitz and Riley in a 1993 New England Journal of Medicine article report that 70 percent of Medicare expenditures in the last twelve months of a person’s life were for inpatient hospitalizations.

Hospice Referrals
Hospice as a “gold standard” of care is important to consider in the equation. In this area, there is still much room for improvement.

MTBE reports hospice referrals for Medicare enrollees who died at 4.9 percent to 42 percent across all states with a mean referral rate of 21.5 percent. For all participants, our rate was similar. It is important to remember that not all of those enrolled in CALL Care would qualify for a hospice referral. Our referral criteria required that death was not eminent and that patients and/or their physicians had not indicated a readiness for hospice.

Deaths
Of those enrolled in CALL Care, 94—or 32 percent—died. This indicates that it was possible to identify and provide services to people earlier in their illness. Of those who died, the site of death was specified for 53 participants. Of these, 38 percent died at home. This compares favorably to national data provided by MTBE reporting a rate of 24.9 percent of deaths at home. Additionally, only 34 percent of the CALL Care enrollees died in the hospital compared to approximately 50 percent dying in the hospital nationally (MTBE). MTBE also reports that 70 percent of us indicate a desire to die at home.

CONCLUSIONS
The outcomes reported by the sites involved in the CALL Care project can serve as guidelines for other organizations striving to improve their delivery of end-of-life services. Several guiding principles, which can be instructive to health care providers, emerged from the experiences of the CALL Care sites.

Creating a Cultural Change
At each site, the project was implemented to complement current strengths in a way that honored the culture of that site. Referrals started slowly. However, at most sites the need for the services outgrew the resources identified for the project, and team members needed to continually reassess priorities of service and establish collaborative partnerships with other programs within the health care organization and within the community. There is evidence that within the 18 months of the grant services (for some 12 months due to a delayed start-up phase) a cultural change in the organization had occurred. This is evidenced by the continually growing number of referrals and consults, the request for additional education, the use of standardized order sets by a variety of physicians, and the establishment of quality-improvement initiatives for care of those with life-threatening illnesses. Even if the site was not successful in identifying those who could benefit from the services and enrolling them in theservices, there was a growth in understanding of the possibility of care needs and greater understanding of the culture of the community. This allowed for redefinition of programs and services.

Economics of CALL Care
With the cost pressures on health care today, it seems paradoxical to suggest that enhanced services may in fact avoid costs. Yet, our data would suggest that this is one outcome for the CALL Care approach. CALL Care services were not necessarily reimbursable services, yet they provided needed services for patients with complex needs. The services focused on improving the quality of living with a life-threatening illness. The results-section data indicates that for these patients, providing services may have resulted in cost avoidance. The implementation of CALL Care services, therefore, could be considered “good economics” from a cost-avoidance standpoint for health care. One example is that sometimes referrals to hospice were facilitated from the person’s home without intervening expensive hospitalizations. Also, the avoidance of costly hospital stays—and even more expensive intensive care stays—was made possible by the interventions provided. Care coordinators helped patients and their families prevent crisis events and articulate goals. One weakness in these data is that emergency department visits were not tracked. Focused care more quickly supported the most appropriate treatments that would help achieve the patient’s and family’s goals. Thus, even with the FTE requirement of a coordinator, the cost avoidance of the approach made CALL Care economically feasible.

Recommendations for Those Considering a CALL Care Approach
This summary provides an overview of processes and outcomes. If organizations are considering a CALL Care-type program, please review the full report (see box below) for a more in-depth discussion of the processes and outcomes. Although sites differed, there were some common recommendations across sites. They all recommended modifications in the approach and were clear about the factors that made their program successful.

Key to success of the demonstration programs were:

• Identified administrative champion
• Physician leader who could champion the work
• A coordinator who was passionate about the work and charismatic in his/her approach.
• Education for all health care providers about the referral criteria and the program, emphasizing the potential added benefits for existing hospice and home health services, physicians, clinicians, patients, and families
• Systematic strategy to identify those who would benefit from the approach
• Systematic data collection from the organization, patient, and bereaved family
• Networking and partnering with existing community programs
• Systematic interdisciplinary team case review
• Reaching into the patient’s home environment

Changes suggested from the approach described in this article were:

• Change the inclusion criteria to include other disease diagnoses and earlier enrollment. Perhaps ask referring physicians, “Would you be surprised if this person was still alive in 12 months?”
• Simplify the permission process
• Shorten the assessment tool(s) for patients and bereaved family members (The Modified City of Hope Patient and Bereaved Family Questionnaires in their complete form may not be the forms you chose to use for your project, but it is very important to use a systematic, comprehensive assessment tool. The benefit of such an approach is to individualize services, communicate among team members, and show evidence of program success through data reports.)
• Develop relationships with existing clinical services such as COPD clinics or congestive heart failure clinics. (This increases the early referral pattern and can perhaps prevent crisis events for the patient and family and demonstrate even more cost avoidance for the organization.)
• Partner with community faith-based parish nurse programs and/or health ministries
• Benchmark services and outcomes against other similar organizations
• Continue to seek feedback from the population served regarding changing service needs and recommendations for addressing the needs

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• CALL Care—the Real Experience
  Specifically, what form did CALL Care take at the model sites? It depends. For some participants it was:
   
  Providing excellent symptom management
  Creating the opportunity to discuss the possibility of dying and to clarify goals and issues during a facilitated discussion with family caregivers
  Linking patients and families with community programs that were able to provide excellent supportive services
  Arranging for legal consultation for a worried grandmother
  Reminding a patient by e-mail to keep physician appointments
  Arranging for oxygen for a woman who "did not qualify" but for whom the oxygen made a significant difference in her quality of life
  Arranging transportation
  Helping patients apply for benefits under Medicare or social security
  Assisting in enrollment in medication-assistance programs
  Providing spiritual support for the patient and family member
  Interpreting medical and medication instruction
  At all sites, it was about being there as friend and advocate for the patient who had difficulty managing the health care system or simply being a loving, caring presence in a complex system. The patients served were very ill, with complex physical, psychosocial/emotional, and spiritual needs. Their needs—and thus the services required—likely would have gone unmanaged without CALL Care. This did not duplicate other services but aligned with and enhanced available services. 
  

The CALL Care Sites

Good Samaritan Health Center of Merrill, Merrill, WI (Catholic Health Initiatives)
Holy Cross Hospital, Silver Spring, MD (Trinity Health)

Mercy Rehabilitation Care Center, Roseburg, OR (Catholic Health Initiatives)

Our Lady of Lourdes Regional Medical Center, Inc., Lafayette, LA (Our Lady of Lourdes Regional Medical Center)

Sacred Heart Medical Center, PeaceHealth - Oregon Region, Eugene, OR (PeaceHealth)

Providence Hospital and Medical Centers, Southfield, MI (Ascension Health)

St. John Neumann Nursing Home, Philadelphia (Catholic Health Care Services, Archdiocese of Philadelphia)

St. John’s Regional Medical Center, Joplin, MO (Catholic Health Initiatives)

St. Joseph Mercy Oakland, Pontiac, MI (Trinity Health)

St. Mary’s Hospital & Medical Center, Grand Junction, CO (Sisters of Charity of Leavenworth Health System)

Via Christi Regional Medical Center, Wichita, KS (Via Christi Health System)

Dedication

This work is dedicated to the patients and families, CALL Care coordinators, physicians, and other members of the interdisciplinary teams who journeyed together to assure excellence in care during the last phases of living with life-threatening illnesses.
Research Team
Sylvia McSkimming, PhD, RN
Executive Director
Supportive Care of the Dying: A Coalition for Compassionate Care
 
Mickey C. Myrick, MD
Formerly with Via Christi Regional Medical Center
St. Joseph Campus
Family Practice Residency Program
Affiliated with The University of Kansas School of Medicine-Wichita
Wichita, KS

Bridget Carney, PhD, RN
Board Chairperson, Supportive Care of the Dying: A Coalition for Compassionate Care
And Corporate Director, Ethics
PeaceHealth
Bellevue, WA
   
Bobbie Ingram, RN
Former Vice President, Nursing, Chief Nursing Officer
Catholic Health Initiatives
Denver, CO

Carroll Quinn, DNS, RN
Vice President Palliative Care
Catholic Healthcare Partners
Cincinnati, OH

Marla London, MA
Director of Health Services Research
Center for Outcomes Research and Education
Providence Health System
Portland, OR

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Acknowledgements
Special Thanks to:
Nick Drew, Research Analyst, Center for Outcomes Research and Education, Providence Health System, Portland, for preparing this complex set of data.

Carol Lieberman, who co-authored this summary. Carol is the administrative secretary for Supportive Care of the Dying: A Coalition for Compassionate Care.

Marla London, Director of Health Services Research, Center for Outcomes Research and Education, Providence Health System, Portland, for her analysis and insight into the meaning of the complex data from this work.

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References

Means to a Better End: A Report on Dying In America Today (2002) Last Acts. www.LastActs.org.

Lubitz, JD & Riley, GF (1993) Trends in Medicare Payment in the Last Year of Life; New England Journal of Medicine; 328 (15): 1092-6, April 15.