Cancer Pain, Palliative & End-of-Life Care
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Hospice of the Upstate “Caring is Preparing”
2 years, $50,000
The LAF funding for this project will provide a model to empower patients, caregivers and health care professionals to improve communication and be equipped to make a clear plan for intentional living and comfort care while making end-of-life decisions. Through this program cancer survivors will work with a coach to identify areas of need such as communication, comfort care, financial decisions, patient and family wishes and use a guidebook to provide a framework for areas of need. This guidebook will be disseminated to other cancer support groups and will be used to engage culturally relevant partners and survivors to develop guidebook content for the African American community. Volunteers from the African American community will be recruited to speak about this end-of-life program to their congregations and to review and assess the program periodically.
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2006 Participants
Sisters of Providence Health System
$24,927 grant over two years
“Companions for the Journey: Culturally Competent End of Life Care”
www.mercycares.com
The Sisters of Providence Health system has created a “Companions for the Journey: A Culturally Competent End-of-Life Care Program” that will complement survivorship programs in the Springfield, Massachusetts area. The program offers a culturally competent, end-of-life care program for hospitalized cancer patients and their family members. The program will reduce isolation and despair for the dying person and family members, provide respite care for families during their bedside vigils at Mercy Medical Center and honor the unique personhood of each dying patient within the context of his or her culture. Linkages within five religious and cultural centers, recruitment of volunteers and mentors and a “Culturally Competent End-of-Life Conference” are all planned for this project.
Erie County Medical Center Lifeline Foundation
$50,000 grant over two years
“Pain and Palliative Care Lifeline Program”
The Eric County Medical Center Lifeline Foundation (ECMC) provides health and medical services to all individuals regardless of their ability to pay who live in the Buffalo, New York area. The LAF funding will add cancer pain and palliative support to ECMC’s existing “Cancer Lifeline Navigation” program which will fill the gap in services for low income, minority cancer survivors. This includes developing the policies and procedures for a referral system to create a cancer pain/palliative care professional team of anesthesiologists, psychologists, physical therapists, nutritionists and social workers who will be connected to a comprehensive pain management program designed to meet the individual needs of each patient.
Hospice of the Bluegrass
$50,000 grant over two years
“Using Telemedicine for Palliative Care in Eastern Kentucky”
www.hospicebg.org
The Hospice of the Bluegrass (HOB) in Eastern Kentucky opened an outpatient clinic, the Palliative Care Center of the Bluegrass (PCCB), to provide the highest quality of holistic patient and family-centered symptomatic care to those who suffer from life-threatening illness. LAF funding will allow PCCB to implement a project using telemedicine to improve palliative care in an area where few cancer patients receive palliative care and instead often undergo futile treatment and experience uncontrolled symptoms and unmanageable pain until their last days of life. The HOB partners with local, state and regional partners to provide comprehensive, quality health and medical services to cancer survivors in Eastern Kentucky.
Kapi'olani Health Foundation
$50,000 grant over two years
“Kapi'olani Quality of Life: Oncology Care in Hawaii”
www.kapiolani.org
The Kapi’olani Medical Center for Women and Children (KMCWC) provides extensive diagnostic and treatment services for women, by women including breast health services, menopause consultation, continence, osteoporosis, ultrasound, genetic counseling, clinical trials and physical therapy. With funding from the LAF, the KMCWC will be able to provide comprehensive palliative care services to cancer patients and their families and to integrate at diagnosis a quality-of-life program with the patient’s standard medical care. The “Quality of Life Program” including both pediatric and adult components will develop in-house trainings, curriculum and referrals to other community agencies as appropriate.
California Health Foundation and Trust
$24,930 grant over one year
“Chinese American Coalition for Compassionate Care”
The California Coalition for Compassionate Care, a project of the California Health Foundation and Trust, is providing Chinese cancer survivors in the San Francisco Bay area with information about pain, palliative and end-of-life care in a linguistically and culturally appropriate format to empower these survivors to make informed medical decisions. A needs assessment identified a lack of culturally appropriate information on pain, palliative and end-of-life care available to Chinese cancer survivors. This project will develop a media campaign, speaker’s bureau and dissemination of written materials that are culturally and ethnically targeted to fully serve the needs of Chinese cancer survivors.
Hospice of the Upstate
$10,000 grant over one year
“Cancer Pain Initiative-Anderson County”
www.hospicehouse.net
The Hospice of the Upstate Cancer Pain Initiative is seeking to effectively impact pain treatment and care in the Anderson County, South Carolina community by discovering specific information by cancer patients and survivors and empower them to seek and advocate for appropriate pain treatment and make informed decisions about their care. The Cancer Pain Initiative will collect data through surveys to identify the current level of cancer-related pain among Anderson County patients and to identify the knowledge needs and resources for healthcare providers to facilitate early access to effective pain management.
Providence Alaska Medical Center
$10,000 grant over one year
Living in a large state with a small population, cancer survivors in Alaska travel to urban populations to receive treatment or follow up, often traveling for hours primarily by boat or plane. Funding from the LAF gives Providence Alaska Medical Center resources to facilitate a six-month planning period to ensure seamless integration and increased availability of palliative care services for cancer patients. Developing a pilot project to deliver palliative, homecare services in Anchorage will be a major step toward improving the quality of life for local cancer survivors.
Maryland Pain Initiative – Baltimore, Maryland
“The Butterfly Connection Program”
www.marylandpaininitiative.org
The Butterfly Connection Program (BCP) is a collaborative effort among the Maryland Pain Initiative, Johns Hopkins Hospital, Sinai Hospital, University of Maryland Medical Center, Pediatrics at Home and the Community Hospice of Maryland. The BCP is a pediatric palliative supportive care program that facilitates the transition of children from the hospital/clinic settings to a home-based pediatric palliative care program to minimize readmissions and improve the quality of survivorship for the patient and family, while allowing for continued aggressive treatment if desired. The BCP also provides a bridge to hospice in instances where access is delayed or the family needs time to consider hospice care. The overall goal of the BCP is to improve quality of life for the pediatric patient and their family by focusing on reducing symptom burden, decreasing psychosocial and spiritual distress and improving care coordination. A secondary aim of the program is to improve HCP knowledge in pain and symptom control, communication skills, ethics, and the use of technology in the end of life care for children within this population. The program includes team planning meetings between inpatient and outpatient health care providers, home visits, an order set and a comfort care kit to address psychosocial needs and symptom management. This grant supports the implementation and evaluation of the program goals.
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2005 Participants
Living Well: California American Indian Palliative Care Education
California Native American Research Center for Health/Indian Health Council - Pauma Valley, California
www.canarch.org
The California Native American Research Center for Health (NARCH) is a collaborative effort between Indian Health Council, Inc., 17 reservation tribal partners, the University of California San Diego and San Diego State University. The NARCH recruits and mentors Native students as well as Native and non-Native faculty interested in research on Native health issues. The Living Well: California American Indian Palliative Care Education program uses anthropology, nursing, psychology and public health research techniques to create, evaluate and modify pain, palliative and end-of-life care training for health care professionals and Southern California Indians. The program allows increased access to high quality care and education for survivors to make informed decisions. Additionally, the program provides training for oncology and primary care physicians on diverse, culturally sensitive palliative care needs and concerns.
Pediatric Palliative and Advanced Care Program for Washington, D.C.
Children's National Medical Center - Washington, D.C.
www.dcchildrens.com
Children's National Medical Center is a leader in pediatric care throughout the country and the world. The Pediatric Palliative and Advanced Care Program (PPACP) for Washington, D.C. serves pediatric cancer survivors in the Washington, D.C. region by providing palliative and end-of-life care to patients and their families, educating health care staff in palliative care services, creating pediatric hospice options and providing dedicated palliative care space for inpatients and families. The PPACP offers pediatric palliative care in the home setting by providing consultations, partnerships with area hospices, creating inpatient resource areas and providing formal curriculum for all clinical staff.
Palliative Care Project
Henry W. Grady Health System Foundation - Atlanta, Georgia
www.hwgf.org
The mission of the Georgia Cancer Center for Excellence (GCCE) of Grady Health System is the reduction of healthcare disparities through improved access to state-of-the-art cancer care. The Palliative Care Project furthers this mission by providing outpatient palliative care services to cancer patients who have uncontrolled symptoms or are in need of end-of-life care. Through the project, a core team of culturally competent and palliative care trained physicians, nurses, social workers and chaplains will work with underserved populations in out-patient clinics to provide multidisciplinary patient and family assessments as well as develop goals that address the medical, psychosocial and spiritual issues in a culturally appropriate context. The goals of the project include reducing health disparities among African-American cancer patients, increasing quality of life, improving patient-provider communications, increasing knowledge of options for care, reducing caregiver burdens and assisting in development of outpatient palliative care programs in underserved communities.
Palliative Care Program: Enhancing the Planetree Model for Improved Care for Cancer Survivors
Northern Westchester Hospital - Mount Kisco, New York
www.nwhc.net
Northern Westchester Hospital (NWH) works to provide the northern Westchester community with the highest quality of prevention, diagnostic and treatment services, while assuring access to a coordinated continuum of care. As a Planetree hospital, NWH promotes healing and wellness by integrating complementary therapies with conventional medicine. The goal of the Palliative Care Program is to enhance the physical and emotional comfort to give cancer survivors a greater sense of control, dignity and privacy to reduce stress, anxiety and depression. LAF funding assists in establishing a multidisciplinary team for the program, which includes physicians, nurses, nurse practitioners, mental health practitioners, clergy, art therapists and rehabilitation specialists. Any cancer survivor may access this team through his or her physician to receive an individualized palliative care plan addressing prognosis, pain and symptom management as well as interdisciplinary treatment modalities and end-of-life and bereavement support. Specifically, the program will provide complementary and expressive therapies, a redesign of four inpatient rooms and oncology common areas and improved staff training. It will also provide support groups for breast cancer survivors, family members with high genetic risk of cancer and spouses of prostate cancer patients as well as a Care Partnering Program to train caregivers for better at-home care.
Pediatric Oncology Palliative Care Education Program
Sacred Heart Children's Hospital - Spokane, Washington
www.shmcchildren.org
Sacred Heart Children's Hospital (SHCH) was established in 2002 by the Sacred Heart Medical Center (SHMC) to serve the growing needs of children in the Inland Northwest region of Washington. The Pediatric Oncology Palliative Care Education Program, a regional public health program to improve access to quality care for pediatric cancer survivors and their caregivers, will serve pediatric patients not expected to live beyond six months during the first year, and it will later be expanded to serve patients with longer life expectancies. The program will invite healthcare providers to attend a one-day End-of-Life Nursing Education Consortium (ELNEC) workshop. Three regional ELNEC workshops will be presented each year to offer in-service provider training on a patient-by-patient basis. The program will also develop patient navigation tools, including a Web site and printed materials that list regionally trained personnel and palliative care services.
Rural Initiative for Palliative Care Education
St. Mary Medical Center - Walla Walla, Washington
www.smmc.com
The mission of the St. Mary Medical Center (SMMC), a nonprofit Catholic hospital, is to improve the quality of life of cancer patients through increased education on palliative care issues for patients, families and healthcare providers. The Rural Initiative for Palliative Care Education will help support self-advocacy of pain and symptom management and self-determination regarding care and end-of-life desires. By educating healthcare providers, SMMC hopes to improve survivors' skills in symptom management, to break down barriers to adequate symptom control and to improve quality end-of-life care.
Pediatric Palliative Care Program (PACCT)
The Institute for Children with Cancer and Blood Disorders - New Brunswick, New Jersey
www.theinstituteforchildren.org
The mission of the Institute for Children with Cancer and Blood Disorders is to improve the quality of life of children and families affected by cancer and to support research to reduce the effects of treatment. TIFC is working to create a fully accessible center of excellence in pediatric palliative care. This project is an expansion of the Pediatric Palliative Care Program (PACCT), a coordinated, comprehensive team approach to delivering palliative care services to pediatric cancer patients that was piloted in 2004. Patients and families participating in the program will receive a variety of services that address their medical, psychosocial, educational and spiritual needs. Funding from the LAF will be used to improve services and support for the Spanish-speaking population to reduce the impact of language as a barrier to high quality palliative care.
A Good Day in the Life of _____
The Toledo Hospital - Toledo, Ohio
www.promedica.org
The mission of Toledo Children's Hospital (TCH) is to nurture, advance and protect the health and well-being of children. The Children's Palliative Care program serves cancer patients under the age of 21 and their families, friends, healthcare providers and caregivers. Families drive the design of children's palliative care services as they work with hospital staff and community representatives to develop a plan for pediatric palliative care and an option for in-hospital hospice. The goal of "A Good Day" is to ensure children live with cancer as normally as possible by participating in community-supported recreational, educational and spiritual activities with family and friends. Funding from the LAF will increase access to palliative care and pediatric hospice by establishing a program that integrates community involvement to support a child's sense of belonging and works with families to explore survivorship issues and community options.
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2004 Participants
Palliative Program
Friends of Froedtert Hospital Foundation, Inc. - Milwaukee, WI
www.friendsoffroedtert.org
The Froedtert Hospital (FH) Palliative Program was one of the first academic programs in the United States focused on the care of seriously ill and dying patients. This grant funds the FH Palliative Care Program to develop and implement an innovative communications skills education program for health professionals working with cancer patents, with particular attention to how psycho-spiritual-cultural issues impact communication. The primary target audience of this project is the seven oncology fellows per year trained in their program, with oncology faculty, physician's assistants, nurses and other community oncology health professionals as a secondary audience.
Integrated Palliative Care Program
Seton Healthcare Network/Cancer Care Team - Austin, TX
www.setonfund.org
The SETON Cancer Care Team provides intensive case management for high-risk cancer patients through the entire continuum of care. The term "high-risk" designates patients who have obstacles to receiving the cancer treatment and support they need, and who need extra assistance in navigating an increasingly complex medical system. The vast majority of patients served by the Cancer Care Team are financially destitute. Nearly all of these patients do not have health insurance, and many are homeless. A large percentage of these patients cannot speak English, and many have advance forms of cancer. The SETON Cancer Care Team was the recipient of a 2002 grant through the Community Program. With this grant, the Cancer Care Team is developing and implementing an outpatient-based, integrated palliative care program that blends supportive care and medical pain management to improve the quality of life and the transition to end-of-life care for ethnically and culturally diverse medically underserved patients with advanced cancer. The team, while already providing many of the services of a palliative program, is formalizing the mission to bring greater accessibility and visibility to the palliative care role, primarily through the inclusion of a greater scope of support. This support includes educating patients and connecting them to vital resources within the community. This care also includes end-of-life counseling, emotional support, and helping to clarify what the patient desires and making sure that a patient's treatment decisions are honored.
West Texas Partnership for End-of-Life Care
Austin, TX
www.txpec.org
West Texas Partnership for End-of-Life Care (WTPEC) is one of several local partnerships Texas Partnership for End-of-Life Care (TxPEC) has helped to establish. TxPEC was a recipient of a 2002 grant through the Community Program and is now working with WTPEC to create a hub of information for persons with cancer and other life-limiting diseases where they can obtain information on palliative and end-of-life care services in their community. Most importantly for this community, these resources must be available in Spanish as well as in English. The partnership develops web-based information services as well as printed materials for dissemination in the local community.
The Caregivers' Support Program
Providence Hospital - Palliative Care Services - Washington, D. C.
www.provhosp.orgThe Caregivers' Support Program complements the current Palliative Care Services by providing a series of seminars on practical issues facing the caregiver. The project also initiates a monthly support group to allow time for caregivers to share and validate their feelings with others who are dealing with similar, often stressful, situations. Seminar topics address the practical aspects of caring for someone who is dying, as well as helping families develop the skills to communicate with healthcare professionals and make end-of-life decisions. In addition, the project staff develops and distributes a resource booklet/manual. This booklet helps families find and use resources in the community that are targeted to families facing serious and progressive illnesses.
Care Planning Conversations: Learning to Speak the Language of Life
Washington Cancer Institute at Washington Hospital Center - Washington, D. C.
www.whcenter.org
The Washington Hospital Center (WHC) is a 907 bed, inner-city, non-profit teaching hospital. The Washington Cancer Institute (WCI), a center of excellence within the hospital system, sees over 300 outpatients daily that represent a culturally diverse population. In 2002, 53.4 percent of all survivors seen in the WCI were African American and 5 percent were Latino. Similarly, 60 percent of individuals residing in the DC area, as of 2000, were African-American and 7.9 percent were Latino. Specifically, the new program entitled Care Planning Conversations: Learning to Speak the Language of Life focuses on helping staff better communicate symptom management strategies and treatment options, and to talk more sensitively about end-of-life issues with survivors and their families, with special consideration given to the influence of culture on these decisions. Phase I of this program consists of researching, implementing, and evaluating a series of surveys of our health care professionals and support staff. Phase II consists of developing a culturally appropriate communication skills building and educational intervention based on the needs identified in Phase I.
Where There Is No Doctor: Palliative and End-of-Life (EOL) Program
The UnBroken Circle - San Francisco, CA
The UnBroken Circle is developing a culturally sensitive and literacy level-appropriate handbook and train-the-trainer curriculum to educate American Indian (AI) and Alaska Native (AN) cancer survivors and their caregivers about palliative care applications and end-of-life care. The "Where There Is No Doctor: Palliative and End-of-Life (EOL)" program consists of 1) an educational TOT curriculum for Community Health Representatives (CHR's), Community Health Aides (CHAP's), and other reservation and village-based providers with limited knowledge about palliative and EOL issues, and, 2) a handbook for cancer survivors and their caregivers detailing and providing practical information pertaining to palliative applications and EOL issues. The curriculum and handbook are primarily for those who live far from medical centers and hospitals, and those who live in areas where there is no doctor immediately available to answer questions, provide advice, or to oversee the palliative and/or EOL care needs of cancer survivors in advanced or life-limiting stages of the disease. In those instances where appropriate healthcare structures do exist, the handbook complements and supplements physician instructions to patients and families. Further, the culturally relevant and sensitive handbook is of use to Native cancer survivors who are in treatment and seek more information on various aspects of care, such as holistic integrative therapies, symptom management, nutrition, coping with cancer, grief and loss, bereavement and other pertinent issues.
On-Call Palliative MusicRx Outreach Project
Children's Cancer Association - Portland, OR
www.childrenscancerassociation.org
Since its inception in 1995, the Children's Cancer Association has worked with thousands of seriously ill children and their families annually to help alleviate some of the challenges and stress that comes with fighting a life-threatening illness. The On-Call Palliative MusicRx Outreach Project fills current gaps and addresses the comfort-care and dying needs of children not currently met by healthcare institutions or elsewhere in the community. In response to this feedback and in partnership with Legacy Emanuel Children's Hospital Compassionate Care Committee, the development of a MusicRx pilot project provides compassionate, end-of-life music services available 24 hours per day, seven days per week. It is tailored to meet the individual requests of children and families, in the location of their choosing - home, hospital or other facility.
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2002 Participants
Texas Partnership for End-of-Life Care: Talk Texans
www.txpec.org
This is a statewide initiative to improve the quality of life for persons facing life-limiting illness. Through a community grant, the LAF will make possible Talk Texans, a program for oncologists and other cancer health professionals in Austin that educates them about talking to their patients and patients' families about illness and death. As an organization focused on the entire spectrum of cancer survivorship, the LAF is happy to support programs and services, like Talk Texans, that address often neglected end-of-life issues.
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