Palliative Care Information Center
The Palliative Care Information Center is intended to provide information and resources about palliative care.
Definitions
- Palliative care: Patient-centered and family-focused medical care that optimizes quality of life by anticipating, preventing, and treating suffering caused by a medical illness or a physical injury or condition that substantially affects a patient's quality of life. The term includes:
- Addressing physical, emotional, social, and spiritual needs.
- Facilitating patient autonomy and choice of care.
- Providing access to information.
- Discussing the patient's goals for treatment and treatment options, including hospice care when appropriate.
- Comprehensively managing pain and symptoms. [From Indiana Code (IC) 16-25-4.7]
- Palliative Care: Specialized medical care for people living with serious illness. The Center notes that the goal of this specialized care is to provide relief from the symptoms and stress of a serious illness, as well as to improve the quality of life for both patient and family. Palliative care can be provided alongside curative treatment and is appropriate at any age and at any stage of a serious illness. [From Center to Advance Palliative Care (CAPC)]
- Palliative Care: Patient and facility-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information and choice. [From National Hospice and Palliative Care Organization]
Perinatal Hospice Information Center
The Perinatal Hospice Information Center provides information about perinatal hospice and palliative care.
Hospice versus Palliative Care
The terms “hospice” and “palliative” care often refer to similar services. A “hospice agency” is an entity licensed by the IDOH under Indiana Code (IC) 16-25 and certified by the Centers for Medicare and Medicaid Services (CMS). A hospice agency is licensed and certified to provide hospice services. Hospice services are provided for terminally ill patients who generally have a life expectancy of less than six months. As part of their services, a hospice agency may provide palliative care services.
A palliative care provider is an entity that provides palliative care for anyone with a serious illness. Palliative care is not limited to someone who has a life expectancy of less than six months. Palliative care may be provided at any age, at any stage of an illness, and may be provided along with curative treatment. While palliative care is often provided by a licensed entity such as a hospice or hospital, it may also be provided by other healthcare providers.
Perinatal hospice or perinatal palliative care is a specialized service provided by a few hospice or palliative care agencies focusing on the loss of an infant’s life any time from conception up to one year of age.
What is palliative care and how does it help patients?
Palliative care is care and support given to an individual and their family when the individual has been diagnosed with a serious illness. Palliative care provides medical, nursing, spiritual, emotional, social, and bereavement care to individuals and families experiencing a significant illness.
Where to find palliative care
This section provides resources with patient-focused information about what to look for when seeking palliative care, sample questions for families, patients, and caregivers to ask, and resources for locating palliative services organizations. The following are sites that may provide beneficial information:
- IDOH Consumer Reports: The IDOH provides information about health care providers. This includes an information page for hospice and hospital providers that includes location, contact information, services provides, and survey history.
- Find a hospice or palliative care provider (NHPCO)
- Get Palliative Care
- Indiana Hospice & Palliative Care Organization, Inc.
- Medicare
Palliative Care Teams
Organizations and Resources
- Increasing access to palliative care
The following resources are intended to help organizations, communities, providers, and caregivers explore tools and methods to increase access to palliative care locally.
- American Academy of Hospice and Palliative Medicine
- Children’s Hospice International
- Hospice & Palliative Nurses Association
- International Palliative Care Resource Center
- National Hospice and Palliative Care Organization: NHPCO Access, Outreach
- National Hospice and Palliative Care Organization: NHPCO Pediatric Hospice and Palliative Care
- Palliative Care Organizations
American Academy of Hospice and Palliative Medicine: The Academy provides a patient site with information and resources about hospice and palliative care.
Center to Advance Palliative Care (CAPC): A national organization dedicated to increasing the availability of quality palliative care services for people facing serious, complex illness. Their web site provides palliative care information for people coping with serious, complex illness. The site includes a palliative care provider directory, descriptions of what palliative care does and how to get it, and an interactive questionnaire to assist you in determining whether palliative care might be appropriate for you or a loved one. Their consumer page is found at www.getpalliativecare.org. Information includes defining palliative care.
Indiana Association for Home & Hospice Care (IAHHC): A provider association representing home care providers to include hospice and palliative care providers. They provide educational programs and resources, technical assistance for providers, and referral information for patients, caregivers, and families.
Indiana Hospice & Palliative Care Organization, Inc. (IHPCO): The Organization is a provider association representing hospice and palliative providers. They provide educational programs and resources, technical assistance for providers, and referral information for patients, caregivers, and families.
National Hospice and Palliative Care Organization (NHPCO): An organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end of life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for people dying in America and their loved ones. Their web site provides information and resources on hospice and palliative care services. Their Consumer Education and Engagement Program is found at www.caringinfo.org.
National Institute of Nursing Research (NINR): The mission of the Institute is to promote and improve the health of individuals, families, and communities. The Institute supports and conducts clinical and basic research and research training on health and illness, research that spans and integrates the behavioral and biological sciences, and that develops the scientific basis for clinical practice. Their web site includes information about palliative care.
PerinatalHospice.org: This site is intended to be a clearinghouse of information about perinatal hospice and palliative care. The site includes resources for parents and caregivers as well as an international list of programs.
Licensing and Certification
There is no specific state license or federal (CMS) certification for palliative care providers. While a licensed or certified hospice or hospital may provide palliative care services, palliative care may also be provided by non-licensed clinics or centers. To qualify as a hospice patient per 42 CFR 418.102(b) a physician must certify the patient has an anticipated life expectancy of 6 months or less if the illness runs its normal course. If a physician is unable to certify the patient to meet the criteria and still orders palliative care delivered in the home by a nurse, therapy, social worker, or aide they may be required by IC 16-27 to be licensed as a home health agency.
