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Palliative Care Tools Listed by Grantee (Demonstration Project) and National Workgroup

The majority of Promoting Excellence in End-of-Life Care grantees (demonstration projects) and national workgroups have finished the term of their Promoting Excellence projects. Each grantee and workgroup developed a number of innovative palliative care tools that we are making available to clinicians and researchers via this Web site. Clicking on the title of a tool will bring you to a cover sheet that provides detailed information about the tool including a description, contact information and sources.

As noted on their respective cover sheets, many of the tools are available for downloading from this Web site, others may be obtained from other sites and some tools are unavailable at this time.

Baystate Medical Center
As one aspect of their project to integrate palliative care concepts into the care of end-stage renal patients, Baystate Medical Center introduced mortality review conferences into the renal dialysis setting. They developed a tool for assessing how well end-of-life care issues were addressed for renal patients, and discussion of this "assessment" is central to the mortality conference. They also developed an instrument for advance care planning for these patients and a questionnaire for assessing the family's perception of care.

Bristol Bay Area Health Corporation
The Helping Hands Project focused on making palliative and end-of-life care available to native Alaskans in 32 remote villages, reducing the need to relocate seriously ill patients during their final days. They trained existing medical personnel in palliative care and created a network of care that included village volunteers. In addition, they created training manuals for health care personnel, families and volunteers and culturally appropriate program materials.

SSM Cardinal Glennon Children's Hospital
The Footprints Project offers case managed palliative care for children with life threatening illness while in the hospital and at home. Project staff developed pediatric palliative care planning tools and clinical training modules. They also developed tools to assess clinician attitudes and needs, family satisfaction with care and the impact of an interdisciplinary palliative care on grief.

Children's Hospital and Regional Medical Center
The Pediatric Palliative Care Project unites a tertiary care children's hospital, hospice and insurers to address the needs of children with life threatening illnesses using a co-case management model. The project team developed a decision making/care planning tool, with an accompanying tutorial, as well as other clinical tools for pediatric palliative care. The project's insurance partners developed frameworks for flexible benefit plans for pediatric palliative care. The project assessed patient quality of life, family satisfaction with care and clinician attitudes and knowledge.

Comprehensive Cancer Center, University of Michigan
In collaboration with Hospice of Michigan, this grantee designed a care system that offers patients with cancer, congestive heart failure or COPD access to hospice services earlier in the course of illness. In an experimental design that includes a control group, they are evaluating the impact of this "simultaneous care" model on symptom management, quality of life and patient/family satisfaction.

Cooper Green Hospital
This grantee served terminally ill patients in an inpatient setting and in collaboration with a local home hospice. They assessed patient and family satisfaction with care. In addition, they collected data on symptom management and quality of life. Another focus of the project was training of medical residents. These trainees were asked to complete a survey that evaluates their comfort with and confidence in providing care to patients at the end of life.

Dartmouth-Hitchcock Medical Center, Norris Cotton Cancer Center
In this project, "palliative care coordinators" helped to identify patients who would benefit from hospice or other home-based services in addition to their care at the Cancer Center. In particular, the project sought to coordinate care between the cancer center and local providers for patients in three different areas of Vermont and New Hampshire. In an experimental design that included a control group, they evaluated symptom management and quality of life for patients as well as perception of care and family satisfaction.

Department of Veterans Affairs, West Los Angeles Medical Center
With the focus on improving end-of-life care for veterans, measures for this project included symptom assessment/management, quality of life assessment and outcomes, and spiritual care needs and outcomes. The project also sought to improve advance care planning for veterans and they tracked conversations regarding treatment preferences. This grantee also evaluated patient and family satisfaction with care, and conducted chart reviews to assess care coordination.

End-Stage Renal Disease (ESRD) Workgroup
The ESRD Workgroup worked to improve supportive care and quality of life for dialysis patients from Spring 2000 - Spring 2002. Chaired by Alvin Moss, MD (Director of the West Virginia University Center for Health Ethics and Law), this workgroup consisted of 23 members including nurses, social workers, nephrologists, and kidney transplant recipients. To accomplish its goals, the workgroup divided into three subgroups -- Education, Quality of Life, and Quality of Dying.

Henry Ford Health System
This project focused on educating clinicians, patients and families about palliative care and creating a system-wide approach to advance directives.
Team members created an educational series designed for busy practicing clinicians. For patients, an integrated booklet and video on advance care planning was developed. An interactive CD that comprehensively addresses questions of those facing serious illness was also produced.

Ireland Cancer Center: University Hospitals & Case Western Reserve University
The "Safe Conduct" team included hospice and cancer center professionals working together to provide palliative care along with curative cancer treatments. The team helped craft care plans that addressed the patients' changing needs as the disease progressed. The grantee evaluated pain and symptom management, patient quality of life and family perception of care following the patient's death.

Louisiana State University Medical Center
Combining palliative care and aggressive treatment for HIV management, this grantees' aim included better symptom management, fewer clinic visits, improved quality of life and higher patient satisfaction. They evaluated impact of the project on all of these goals primarily through focus groups at the participating clinic and at a comparison site. They also collected data from patients during regularly scheduled clinic visits.

Massachusetts Department of Mental Health
This grantee implemented and tested a process for integrating advance care planning into mental health care. They developed a unique interview instrument for determining patient capacity to make advance care planning decisions and for eliciting patient preferences for end-of-life care.

Medical University of South Carolina
Working in the Enterprise Community in Charleston, this grantee conducted focus groups and interviews with providers and community members, some of whom have had recent experiences with terminal illness. They used the information to craft interventions to improve the quality of end-of-life care for the local population, and shared their findings with other similar communities in order to facilitate care improvements.

Mount Sinai School of Medicine
Working with a national managed care provider, this grantee introduced palliative care assessment into the care planning for seriously ill patients in the community setting. They evaluated the impact of this added assessment information on the care and outcomes that patients experience.

PhoenixCare with Hospice of the Valley
PhoenixCare developed a model that offers hospice-like care to patients with advanced illness not yet ready for hospice. Palliative care was offered simultaneously with cure-oriented care. The project created a partnership between a hospice and managed care companies. The project team developed care management tools and a series of educational materials for patients and families.

Sutter VNA and Hospice
Working with managed care, capitated, high-risk patients, this group designed care models that are cost effective while providing state of the art palliative care for terminal patients. They developed a unique evaluation instrument that assesses the impact of the CHOICES project on several aspects of care.

University of California, Davis, School of Medicine
This grantee worked to improve end-of-life care in three different settings.

  • Within the cancer center, they integrated elements of palliative care into treatment plans early in the course illness.
  • In rural areas of Northern California, they created supportive networks for local hospices that included medical center and cancer center resources.
  • Additionally, they established a hospice in a women's prison setting.

Their evaluation plan was slightly different for each setting, drawing on different measures for advance care planning activity, pain and symptom management, patient quality of life, and family satisfaction with care. For their work in the rural settings, they also developed instruments to assess professional educational needs and local provider resources.

University of California, San Francisco
The Comprehensive Care Team project was a social worker case manager model that offered patients palliative care simultaneously with aggressive curative treatment. The interdisciplinary approach included patient advocates, art therapists and caregiver support. The project assessed clinician comfort with discussion of spiritual issues with patients and patient/family satisfaction with care.

University of Chicago Medical Center
Working with Hospice of Michigan, this grantee developed a new model for delivering palliative care to patients with Alzheimer's disease and other forms of dementia. Because of the challenges in evaluating care of these patients, they have developed an innovative interview that gathers data about symptom management and quality of care.

University of New Mexico, Health Sciences Center
To encourage increased use of palliative care in rural New Mexico, this grantee created a network among local hospices in seven communities. They also developed a resource center at the University that provided educational curricula and state of the art palliative care consultation. The project staff conducted in depth studies of several of the rural communities and they developed focus group and survey instruments for that process. Their evaluation focused on measuring the activity and usefulness of the network and resource center. They also used a unique organizational assessment tool to help local hospices identify strengths and weaknesses.

University of Pennsylvania, School of Nursing
This grantee evaluated different techniques for improving care for dying patients in nursing homes. With the goal of integrating palliative care into the fabric of long term care, they developed education for nursing home staff. In selected homes, they also created palliative care teams that review patient care plans regularly. The evaluation was designed to compare the impact of education alone versus education plus the palliative care team on various measures of excellent end-of-life care. These include advance care planning, pain management, psychosocial and psychospiritual outcomes and family satisfaction. They also assessed cost and utilization outcomes.

Volunteers of America, Inc
This grantee addressed end-of-life care in prisons. They introduced hospice care into three institutions and worked with them and the National Hospice and Palliative Care Organization to develop national standards for prison hospices. Their evaluation will be largely qualitative, and will seek to describe the development process for each of the three prison hospices.

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Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families.