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Palliative Care Information Center

Welcome to the Palliative Care Information Center.  This Center is intended to provide information and resources about palliative care. 

Acronyms and Definitions

Acronyms

  • CMS:  Centers for Medicare and Medicaid Services
  • ISDH:  Indiana State Department of Health

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:
  1. Addressing physical, emotional, social, and spiritual needs.
  2. Facilitating patient autonomy and choice of care.
  3. Providing access to information.
  4. Discussing the patient's goals for treatment and treatment options, including hospice care when appropriate.
  5. Comprehensively managing pain and symptoms.

[From Indiana Code (IC) 16-19-17-2]

  • 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]

Palliative Care and Quality of Life Advisory Council

In 2016 the Indiana General Assembly created the Palliative Care and Quality of Life Advisory Council.  The goal of the Council is educating and advocating for quality palliative care throughout Indiana.  The ISDH created an Information Center that provides information about the Council and its activities.  The Palliative Care and Quality of Life Advisory Council web page is located at https://www.in.gov/isdh/27852.htm.

Perinatal Hospice Information Center

In 2016 the ISDH created an online Perinatal Hospice Information Center to provide information about perinatal hospice and palliative care.  The Information Center is located on the ISDH web site at https://www.in.gov/isdh/27241.htm

Health Care Quality Resource Center

The Indiana Health Care Quality Resource Center is intended to provide resources and information to assist health care facilities in providing quality health care.  The information may be educational to patients and families who wish to learn more about care issues.  Most of these issues would be of interest to individuals interested in palliative care.  Topics include abuse, advance directives, Alzheimer’s and dementia, fall prevention, infection prevention, and pressure ulcers.  Each Resource or Information Center provides tools, education and training resources, related regulations, and additional resources.  

Hospice versus Palliative Care

The terms “hospice” and “palliative” care often refer to similar services.  A “hospice agency” is an entity licensed by the ISDH 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:

ISDH Consumer Reports:  https://www.in.gov/isdh/23432.htm

The ISDH 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) - nhpco.org/find-hospice/pcp

Get Palliative Care - getpalliativecare.org

Indiana Hospice & Palliative Care Organization, Inc. - ihpco.org

Medicare – www.medicare.gov

Palliative Care Teams

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.

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 - aahpm.org

Children’s Hospice International - chionline.org

Hospice & Palliative Nurses Association - advancingexpertcare.org

International Palliative Care Resource Center - ipcrc.net

National Hospice and Palliative Care Organization:  NHPCO Access, Outreach - nhpco.org/access

National Hospice and Palliative Care Organization:  NHPCO Pediatric Hospice and Palliative Care - nhpco.org/pediatric

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 - http://palliativedoctors.org/.

Center to Advance Palliative Care (CAPC):  The Center to Advance Palliative Care (CAPC) is a national organization dedicated to increasing the availability of quality palliative care services for people facing serious, complex illness.  The home page for the Center is found at capc.org/.  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 - capc.org/payers-policymakers/what-is-palliative-care.

Indiana Association for Home & Hospice Care (IAHHC):  The Association is 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. Their web site is located at www.iahhc.org.

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.  Their web site is located at https://ihpco.org/.

National Hospice and Palliative Care Organization (NHPCO):  The Organization is 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.  The web site is located at www.nhpco.org.  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 at www.ninr.nih.gov.

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.  The web site is located at www.perinatalhospice.org

 

Site Created:  June 1, 2018

Site Updated:  n/a