Overview. The Center to Improve Care of the Dying is engaged in a number of projects designed to move the field of end-of-life care forward, to learn how to take better care of patients at the end of life, and to help health care provider organizations improve the ways care is provided. One of the central projects of the Center is MediCaring. MediCaring is an innovative program of comprehensive and coordinated health care, which blends the best of palliative care with the best of medical, and disease management, tailored to the needs of the seriously chronically ill. The program focuses on heart and lung disease (i.e., Congestive Heart Failure and Chronic Obstructive Pulmonary Disease) patients nearing the end of life (the last 2-3 years). The MediCaring eligible population will be identified using severity of illness threshold measures specific to major chronic diseases rather than a prognosis definition (as is now the case with hospice). MediCaring builds on the premise that good care of the dying calls for interdisciplinary approaches to care (e.g., primary care physician, advanced practice nurse, social worker, clergy, etc.), continuity and coordination of care, integration of diverse services delivered in a variety of settings, excellent symptom management, maintenance of function, patient/family counseling and support, attention to spiritual and personal growth issues, and a change in the orientation and culture of providers to provide care shaped by the patient’s values and personal situation.

MediCaring is not a duplication of the hospice or PACE programs. Comprehensive institutional and community-based care, managed by interdisciplinary teams of health care professionals, marshalling existing resources within the community for social services, and tailoring care to the individual’s needs are hall-marks of all three programs. MediCaring, however, would serve populations not now being served, would extend this care to hospital settings, and will test a financing mechanism (and other incentives) and range of prices that would allow a systematic program to be instituted in Medicare. Services would be financed by a special capitation rate, risk adjuster, and/or special payments to special providers by Medicare. The goals of MediCaring are to improve care at the end of life by developing appropriate, optimal, cost-effective services that blends the best of palliative care with the best of medical and disease management and to propose sustainable service, financing, and regulatory reform in Medicare through a national demonstration project involving healthcare provider organizations nationwide (including hospices, large group practices, Medicare managed care, and the Veterans’ Affairs Health Care System).

Proposed Projects. Representatives from a variety of health care organizations, the Department of Veterans Affairs, and the Health Care Financing Administration have come together for a total of four planning meetings over the past year and a half to discuss the feasibility of implementing a nationwide, three-year MediCaring Project program evaluation.

The number and diversity of the organizations interested in the MediCaring project present a unique opportunity to substantially increase our knowledge base and at the same time move innovations forward far more rapidly than could be achieved by a demonstration project alone. A series of projects are being implemented under the banner of the MediCaring Projects (See attached project flowchart) starting with a national quality improvement project to improve care for patients seriously ill with advanced stages of chronic obstructive pulmonary disease and congestive heart failure.

Project 1: Improving Care for Patients with Advanced Congestive Heart Failure and Chronic Obstructive Pulmonary Disease Breakthrough Collaborative (January to November 1999). Up to 60 health care organizations (20 DVA Medical Centers and 40 non-DVA health care provider organizations) will be selected to work intensively together to implement and test excellent comprehensive care for persons with advanced stages of CHF and COPD. Among the goals of this special Advanced CHF/COPD Collaborative are to learn: (1) to target patients for special services, (2) to tailor services to the needs of these populations, (3) to set up information systems and records to support excellent care and 4) to understand which innovations are broadly applicable and efficient in moving care systems toward the vision of optimal care. This Collaborative, sponsored by the Center to Improve Care of the Dying, the Department of Veterans Affairs, and the Institute for Healthcare Improvement, will run for 9 months and involves three learning sessions scheduled for: January, 1999, mid-April, 1999, and a third in the fall. By September 1999, most sites participating in the Collaborative are expected to have some program and patient data collected by chart review and interviews. This data collection will be conducted by centrally trained and managed teams of data collectors (not on-site personnel) through visits to each Collaborative site. We are in the process of securing foundation funding for these data collection activities. The IHI Collaborative on Improving Care for Patients with Advanced CHF/COPD will help organizations make changes that lead to improvements in the following areas:

1. Care Coordination for Persons with Advanced CHF/COPD
2. Continuity of Care Across Delivery Sites
3. Patient/Family Education in Self-Care and Support
4. Medical Services for Acutely Ill and "Stable" CHF/COPD Patients
5. Pain/Symptom Relief
6. Advanced Care Planning

1. Full participation of a three-person team for approximately nine months, including three two-day Learning Sessions.
2. Ongoing consultation, communication, and support from experts and peers during Action Periods, when organizations apply the learning and implement iterative tests of change on small samples of patients.

The fee for an organization to participate in this special Collaborative is $12,500. An organization may send additional staff to a Learning Session for a fee of $800 per person per Learning Session. In addition, participating organizations will be responsible for their own travel costs lodging and on-site improvement efforts.

The Collaborative on Improving Care for Patients with Advanced CHF/COPD is an important first step in the MediCaring Project’s long-term research and public policy reform goals. Organizations that have good prospects for success will be invited to participate in the Collaborative. Interested organizations are asked to provide background information on an application form attached to this document or can be obtained our website: www.gwu.edu/~cicd. Future project activities, slated to begin in January 2000, constitute the formal research program evaluation and include the following:

Project 2a: (January, 2000-December, 2002): VA Randomized Trial of the MediCaring Model. This project will rigorously evaluate programs and control sites, using 20 new VA Medical Centers (10 randomized to "MediCaring" and 10 randomized to "Usual Care"). None of the 20 can be sites that participated in the Advanced CHF/COPD Collaborative. The best practices identified in the CHF/COPD Collaborative will be implemented at each of the VA MediCaring sites. Rigorous, systematic data collection will be conducted on site and through centralized data collection to test the new model of care for patients within the VA system.

Project 2b: (July 1999-December, 2002): Non-VA Non-Randomized Trials of the MediCaring Model. This series of studies will use the rigorous program evaluation data collection in approximately 10-20 non-VA health provider demonstration sites. Each site will implement the best practices identified in the Advanced CHF/COPD Collaborative and elsewhere. Date collection will be conducted on-site through centralized data collection efforts managed by CICD. These sites will have a suitable comparison group who can be followed in usual care. Some sites participating in the trials will be participants in the Advanced CHF/COPD Collaborative.

1. The patient population for the demonstration —The demonstration will focus, at least initially, on patients with CHF and/or COPD, two of the most prevalent diagnoses at the end of life. Inclusion criteria will be based on thresholds determined by diagnosis, severity, and utilization, with little emphasis on physiology and lab tests.

 

2. The services to be offered in the demonstration-- Services will encompass a "hospice-like" array of palliative and supportive services, delivered by a multidisciplinary team of providers, primarily to persons in the home. All care choices available to Medicare patients (such as CPR, ICU care, etc.) would still be made available but the priorities would be changed to symptom management, radical continuity across setting and over time, attention to the quality of life, advance care planning, and psychosocial and spiritual attention.

 

3. Potential sites for the demonstration—At a minimum, large hospices, managed care organizations, and the VA are appropriate sites for the demonstration.

 

4. Outcomes to be measured and other methodological issues—Potential outcome data to be collected include: costs and charges, reports and ratings of patient/family satisfaction, symptom management, family impact, specific utilization data, and the place of death and whether or not it was the preferred site.

 

Data will be collected with baseline, monthly or bi-monthly, every 6-months, and with follow-up telephone interviews. The Non-VA research design is an annotated time-series with comparison groups to allow for data triangulation. Non-VA demonstration sites will enroll a minimum of 100 patients with contemporaneous controls (N=50).

 

5. Financing and waivers for the demonstration—Funding for program evaluation activities is being sought for the non-VA providers from foundations, federal agencies (AHCPR, NIA, etc.). Methods for involving HCFA include:

• Waiver only; e.g., demonstration self-financed (perhaps with patient care being set at nursing home rates for MCOs and hospice rates for hospices), plus any possible foundation money,
• Coordinated care demonstration, required by the Balanced Budget Act, (with some possible HCFA funding, but HCFA has restraints on timing),
• Standard demonstration (financed by HCFA, perhaps in combination with others),
• CREDA (could be used by HCFA as a way of getting to a waiver and still be self-financed).

We invite you to keep in touch with the progress of these endeavors through The Exchange, the monthly newsletter put out by Americans for Better Care for the Dying (ABCD). The websites for both ABCD (www.abcd-caring.com) and CICD (www.gwumc.edu/~cicd) will carry updates as well. In addition, the Center to Improve Care of the Dying will be establishing an Internet "listserv" connected to the Advanced CHF/COPD Collaborative within the next couple of months. Please contact us to join.

Improving Care for Patients Seriously Ill with Advanced Chronic Obstructive Pulmonary Disease and/or Congestive Heart Failure Breakthrough Collaborative

1. Briefly describe your organization (including type of organization, size, structure, patient base, etc.)

 

 

 

 

 

 

2. Describe in a brief paragraph the proposed area of focus of your project and why your organization wants to improve care in advanced COPD/CHF.

 

 

 

 

 

3. Do you have administrator and clinician "buy-in" for the clinical innovation and costs of quality improvement activities? Briefly explain. YES NO

 

 

 

 

 

 

4. What medical or administrative leader will this team be able to rely on to remove whatever obstacles may arise or to obtain necessary resources during the course of the Collaborative? YES NO

 

Please identify the medical or administrative leader for your COPD/CHF Collaborative Team Leader:

 

Name (print) Phone E-mail

 

5. Please list the names and titles of the three people most likely to participate in the Collaborative by attending the three Learning Sessions:

 

 

a.

Name (print) Phone e-mail

 

 

b.

Name (print) Phone e-mail

 

 

c.

Name (print) Phone e-mail

 

 

6. Do you have an interdisciplinary team of providers able to serve the COPD/CHF patient population through to death? If Yes, describe. If No, discuss what your organization can do now and could reasonably do quickly.

 

 

 

 

 

7. How extensive is your organization’s usual continuity of care across provider settings? How close are your relationships with other major providers (including community resources) in your area serving COPD/CHF patients? What volume of COPD/CHF patients do you serve and what is the diversity of their backgrounds? Briefly explain.

 

 

 

 

 

 

8. Describe your organization’s intent to provide the following aspects of comprehensive care through end-of-life: a) medical treatment with pain and symptom relief, b) advance planning, c) patient family education, and d) care coordination and 24 hour accessibility. Briefly explain.

 

 

 

 

 

9. For what group and scope of care is your organization "at risk" financially?

 

 

10. Do you believe your organization will want to contribute research-level data to the MediCaring Demonstration (January, 2000 or later)? (Circle one answer) YES NO

 

 

 

 

11. Is there anything else that you would like us to know about your organization?

Name/Phone/E-mail of Individual Completing this form if different from Team Leader:

Note:

The fee for an organization to participate in this special Collaborative is $12,500. An organization may send additional staff to a Learning Session for a fee of $800 per person per Learning Session. In addition, participating organizations will be responsible for their own travel costs lodging and on-site improvement efforts. No payment is required at this time. We will bill your organization when it is selected for participation in the Collaborative.